Respite Care Study Final Report DQ # IHEA 2016000272
P RESENTED TO THE C OLORADO D EPARTMENT OF H UMAN S ERVICES
N OVEMBER 30, 2015
Table of Contents OVERVIEW, PURPOSE, AND RESEARCH QUESTIONS ................................................................ 2 SUMMARY OF THE RESEARCH ................................................................................................ 2 FIRST DRAFT OF PROJECT PRIORITIES, TOPICS AND METHODS ................................................ 4 REVISED DRAFT OF PROJECT PRIORITIES, TOPICS AND METHODS ........................................... 6 RESEARCH ............................................................................................................................ 10 Research on Return on Investment .......................................................................................................... 10 Proposed Research Study ......................................................................................................................... 17 Research on Funding ................................................................................................................................ 22 Research on Colorado Supply and Demand and Access to Respite Across the Lifespan ......................... 25 Colorado Needs, Gaps, Providers, and “Hotspots” .................................................................................. 45 Research on Awareness and Marketing ................................................................................................... 52 Research on Disability Competence ......................................................................................................... 59 Research on Cultural Competence ........................................................................................................... 68 Research on Provider Training.................................................................................................................. 75 Research on Informal Respite................................................................................................................... 79 Research on Access to Respite Services ................................................................................................... 84 Impact, Barriers, and Measures for Evaluation of Respite Care Services ................................................ 87
CONCLUSIONS: USING THIS RESEARCH TO DEVELOP RECOMMENDATIONS .......................... 96 APPENDIX A: COLORADO MEDICAID WAIVER LIMITATIONS ON RESPITE CARE ...................... 97 APPENDIX B: CAREGIVER INTERVIEW GUIDE....................................................................... 100 APPENDIX C: ORGANIZATIONAL AND STATE INTERVIEW GUIDE .......................................... 103 APPENDIX D: INTERVIEWEES .............................................................................................. 105
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OVERVIEW, PURPOSE, AND RESEARCH QUESTIONS In September 2015, Health Management Associates Community Strategies (HMACS) was contracted by the Colorado Department of Human Services (CDHS) State Unit on Aging (SUA) to support its efforts and the efforts of the Respite Services Task Force (“Task Force”) to develop recommendations to the legislature that will improve access to and the quality of respite services throughout Colorado and across the lifespan. Specifically, HMACS was tasked with providing research to the Task Force for it to use in developing its recommendations. At the beginning of the contract, the HMACS team held a kick off meeting with the Respite Care Study core team, has had additional meetings with the team, with Mindy Kemp and Todd Coffey from Division of Aging and Adult Services, Colorado Department of Human Services (CDHS), and with the contracted facilitators Lisa Carlson and Barbara Yondorf from Engaged Public. Additionally, HMACS has attended and participated in several Task Force meetings. All of these meetings have been used to finalize the research plan, finalize the detailed work plan and timeline, and discuss and shift research priorities. Additionally, these meetings were used to share information and research findings as they were available, and solicit input from CDHS, the Task Force co-chairs, the Task Force facilitators and the Task Force on the research being compiled and conducted and on priorities. Using information from these meetings, the HMACS team conducted research on all priority areas, and presented preliminary and emerging findings on many of these areas at the Task Force meetings in October and November. These areas included research and information on: return on investment, funding for respite, training, cultural competence, and marketing/awareness efforts. An interim report on findings was provided to CDHS and the Task Force in October 2015. Research efforts continued through November 2015, resulting in a presentation to the Task Force on November 30, 2015 and the submission of this report on the same date. HMACS will continue to be available to the Task Force and CDHS throughout December and January, to address additional questions that may arise, and to provide the resources in this report in other formats if needed, as the Task Force continues to refine and finalize its recommendations and report to the legislature in January 2016. This final report begins with an overview of the initial project priorities, topics and methods, followed by an overview of the revised project priorities. These are followed by research in all of the areas requested by the Task Force, including supporting references, tables, charts, maps, and descriptive narrative for the Task Force to utilize as it makes its recommendations and finalizes its report to the legislature.
SUMMARY OF THE RESEARCH Data are extremely limited, both locally and nationally, on who caregivers are, on the extent of their needs for respite services, and on gaps in respite services. This research leveraged all existing research that could be found within the tight timeframe of the project, and conducted additional analyses using data sets that could be accessed within the timeframe. In some cases, existing 2
research that was not conducted in Colorado was used to explore findings and best practices from other states and nationally. In other cases, proxy data were used to explore where needs might be greatest in Colorado and where resources might be located. Analyses, including “hotspot” maps of potential need and existing providers are provided in this report. Additionally, interviews were conducted with providers, with experts on respite, and with caregivers, to fill in more detailed information about needs, supply, gaps, and barriers to accessing respite services. The research contained in this report provides strong indications of needs and gaps in respite services in Colorado, including variation in needs and supply across the state, as indicated by provider maps, hotspots, population projections, utilization patterns and qualitative data from caregivers and others. The data suggest that needs may be greater in rural areas, where there are fewer providers and may be a higher percentage of caregivers. In terms of return on investment (ROI), almost no rigorous data on ROI in respite services exists, despite overwhelming anecdotal and qualitative evidence that respite services are valued by caregivers and care receivers, that these services improve the lives of caregivers, as well as care receivers, and that respite services may help allow individuals to remain in their homes and communities longer. The limited research on ROI is summarized in this report, and a potential plan for future research is provided. In terms of public awareness campaigns about caregiving and respite services, this report explores other states’ best practices for helping caregivers become aware of their role as a caregiver, their needs, and the availability of respite services. This research is summarized, and estimates of the costs for conducting such campaigns is provided here. Last, research on best practices for providing training to respite providers, ensuring both cultural and disability competence among respite providers, and on informal respite is summarized, from a scan of the literature and interviews with other states.
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FIRST DRAFT OF PROJECT PRIORITIES, TOPICS AND METHODS Overview of Plan: Topics and Questions, Process and Methods, and Development of Recommendations; October 15, 2015 Interviews Interviews with How will this support the Previous Provider Utilization Topic Question with individuals development of recommendations? Research* Indexes Data Providers and/or Which recommendations? families What is the current supply of respite in Colorado across the lifespan and Looking at what we know about Supply for different subgroups? Are there X X X X X supply and demand together, as well services available across the as predictions about the population lifespan? in the future, recommendations What is the unmet need or demand about the need for additional Demand/ in Colorado? What is the current workforce and/or funding can be Unmet utilization and what can we infer X X X X X generated. Needs about unmet need or predict about future needs? By examining other innovative and What are the current funding emerging models for funding, streams for respite in Colorado? Funding X X X recommendations can be generated What are some innovative funding around possible funding innovations models that other states are using? in Colorado. By examining existing research on What do we know about the return ROI, recommendations around on investment in respite across the additional funding or workforce lifespan, for the health of those Return on investments can be made with receiving care, for their caregivers, X Investment empirical support. By looking at and for the system overall? What national models, recommendations can we learn from other states to adopt or adapt these may be about ROI on their models? generated. *Includes research on Colorado and national research looking at innovative models
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Topic
Question
Training, Availability of PersonCentered and Culturally Competent Respite
What training is available, what are gaps in training, and what are the unmet training needs? To what degree do providers and individuals being served feel that respite services are person-centered and culturally competent for different subgroups? What are unmet needs there? What national models exist to ensure workforce adequacy, that adequate training is provided/available, and that services are person-centered and culturally competent?
Awareness of Respite/PR Access to Services, Processes to Access
Informal Respite
What are unmet needs around awareness of respite services and caregiver needs for respite? What models are other states using to increase awareness in these areas? What is the perception of how easy or hard it is to access respite services? What models are other states using to improve access and make resources easier to access? What do we know about the volume of informal respite services that are being provided? What do we know about needs for training, quality of services, and other needs around informal respite? What have other states done around this issue?
Previous Research*
Provider Indexes
X
X
Interviews Utilization with Data Providers
Interviews with individuals/ families
How will this support the development of recommendations? Which recommendations? By learning more about availability of training and unmet training needs, and about the degree to which services are person-centered and culturally competent, recommendations can be generated about increasing person-centeredness, cultural competency, and/or general training for respite providers. By looking at national models, recommendations to adopt or adapt these may be generated.
X
X
X
X
X
By looking at national models, recommendations to adopt or adapt these may be generated.
X
X
X
By looking at national models, recommendations to adopt or adapt these may be generated.
X
By looking at national models, recommendations to adopt or adapt these may be generated.
X
X
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REVISED DRAFT OF PROJECT PRIORITIES, TOPICS AND METHODS Overview of Plan: Topics and Questions, Process and Methods, and Development of Recommendations October 15, 2015; Updated October 28, 2015; Updated November 6, 2015 Tier 1 Priorities for Remaining Research (Highest Priority) Topic
Supply
Demand/ Unmet Needs
Question
How will this support the development of recommendations? Which recommendations?
What is the current supply of respite in Colorado across the lifespan and for different subgroups? Are there services available across the lifespan? Methods: 1. Map all known providers, using multiple lists and data sources 2. Interviews with experts across Colorado and some interviews with other states about supply, including organizations providing respite and some caregivers 3. Literature review about known limitations in supply, especially across the lifespan and across different needs and situations (i.e., needs of the person receiving caregiving, rural setting, age of caregiver) What is the unmet need or demand in Colorado? What is the current utilization and what can we infer about unmet need or predict about future needs? Methods: 1. Analyses of HCPF waiver utilization data and PAR data 2. Interviews with experts across Colorado, and some interviews with other states about demand and unmet need, including organizations providing respite and some caregivers 3. Literature review about known demand and unmet needs, especially across the lifespan and across different needs and situations (i.e., needs of the person receiving caregiving, rural setting, age of caregiver)
Looking at what we know about supply and demand together, recommendations about the need for additional workforce and/or funding can be generated. Also, by identifying what data and findings are not currently available, the Task Force may develop a recommendation around future data collection efforts.
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Topic
Funding
Return on Investment
Question What are the current funding streams for respite in Colorado? What are some innovative funding models that other states are using? What data are available about funding in Colorado for respite relative to other states? What do these data tell us? What information is available about the funding sources for respite in Colorado? Have other states utilized other funding streams? What lessons are there for Colorado from other states? What data and information are available from CCBs about providing respite? What do those data tell us about funding and utilization? Methods: 1. Review of available documentation 2. Analyses of HCPF waiver utilization and waiver documentation 3. Interviews with experts across Colorado and some interviews with other states about creative funding sources, including organizations providing and/or funding respite What do we know about the return on investment in respite across the lifespan, for the health of those receiving care, for their caregivers, and for the system overall? What can we learn from other states about ROI on their models? What information and data are available about the cost and impacts to taxpayers, the state, and/or health care systems of not having adequate access to respite? What data and information are available to measure the value of prevention relative to respite services? Methods: Review of all available literature, including any pilot studies or ROI studies (which will be used to uncover best practices for measuring ROI)
How will this support the development of recommendations? Which recommendations?
By examining other innovative, emerging models for funding, recommendations can be generated around possible funding innovations in Colorado.
By examining existing research on ROI, recommendations around additional funding or other investments can be made with empirical support. By looking at national models, recommendations to adopt or adapt these may be generated.
*Includes research on Colorado and national research looking at innovative models
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Tier 2 Priorities for Remaining Research (Continue, but lower priority) Topic
Question
How will this support the development of recommendations? Which recommendations?
Training
Old questions/priorities: What training is available, what are gaps in training, and what are the unmet training needs? To what degree do providers and individuals being served feel that respite services are personcentered and culturally competent for different subgroups? What are unmet needs there? What national models exist to ensure workforce adequacy, that adequate training is provided/available, and that services are person-centered and culturally competent? New questions/priorities: 1. Identify existing or create training models to ensure providers are capable of providing care to high needs populations, including those with behavioral challenges and medically fragile individuals 2. Look at other national models that include cultural competency, recognizing that it goes beyond race and ethnicity, particularly exploring training programs that address differences in culture, disability and background, and language.
By learning more about availability of training and unmet training needs, and about the degree to which services are person-centered and culturally competent, recommendations can be generated about increasing person-centeredness, cultural competency, and/or general training for respite providers. By looking at national models, recommendations to adopt or adapt these may be generated.
Availability of Culturally and Disability Competent Respite
To what degree do providers and individuals being served feel that respite services are culturally and disability competent? What are unmet needs there? What national models exist to ensure workforce adequacy, that adequate training is provided/available, and that services are personcentered and culturally competent? What training models exist to ensure providers are capable of providing care to high needs populations including those with behavioral challenges and medically fragile individuals?
By learning more about the degree to which services are culturally and disability competent, recommendations can be generated about increasing competency, and/or training for respite providers. By looking at national models, recommendations to adopt or adapt these may be generated.
What are unmet needs around awareness of respite services and caregiver needs for respite? What models are other states using to increase awareness in these areas? Awareness of Respite/ PR
What research can help the Task Force develop a long-term recommendation around whether to create a state-run marketing and outreach campaign to reach caregivers and increase public education of need and resources?
By looking at national models, recommendations to adopt or adapt these may be generated.
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Tier 3 Priorities for Remaining Research Topic
Question
Access to services, processes to access Informal Respite
What is the perception of how easy or hard it is to access respite services? What models are other states using to improve access and make resources easier to access?
What do we know about the volume of informal respite services that are being provided? What do we know about needs for training, quality of services, and other needs around informal respite? What have other states done around this issue?
How will this support the development of recommendations? Which recommendations? By looking at national models, recommendations to adopt or adapt these may be generated. By looking at national models, recommendations to adopt or adapt these may be generated.
*Includes research on Colorado and national research looking at innovative models
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RESEARCH Research on Return on Investment Summary and Overview The evidence for a positive return on investment (ROI) on respite care is mixed. Research does find some practical benefits for caregivers, but it is unclear about the benefits (particularly longterm benefits) to caregiver outcomes and its role in delaying institutionalism. The Economic Value of Caregiving and Spending on Respite The number of family caregivers and their economic value is increasing in the United States. Nationally, the economic value of caregivers’ unpaid work has increased from $450 billion in 2009 to $470 billion in 2013.1 More than three in 20 (16.6%) individuals care for an adult and/or child with a special health care need in the United States.2 Approximately one in 10 (11% or 584,000) Coloradans are caregivers providing 4.14 million hours of care per year. The value of this is estimated to be $13.68 per hour for a total economic value to the state of $7.4 million per year.3 Across the United States, the economic value of caregiving ranges from $10.53 per hour in Louisiana to $15.05 per hour in Alaska.4 The most recent publicly available data related to respite spending per person in Colorado is from 2007, revealing that Colorado spent $2.72 per caregiver that year, compared to United States spending per caregiver of $5.43 the same year. The range of respite spending per caregiver was $0.48 in Massachusetts to a high of $43.02 in Alaska.5 Health Costs to the Caregiver Caregivers are more likely to report fair or poor health relative to non-caregivers, and the economic downturn has increased the amount of stress caregivers feel, adding to their overall health burden. 6 With the demographic shift in caregivers as the population becomes increasingly older, the health issues facing individuals aged 18-39 are as much an issue as those facing individuals aged 50 and older.7 Financial Cost of Caregiving The financial cost to working caregivers of seniors and their employers is significant, with one study revealing an 8% differential in increased health costs between caregiving and non-caregiving employees, costing employers an extra $13.5 billion per year. To the caregiver, this is a loss of $303,880 (over their lifetime) on average.8 Cost Effectiveness of Caregiving Overall, the cost effectiveness of respite care remains unclear. Research has been undertaken by several groups across the nation to see if respite care reduces 1
AARP. (2015, July). Valuing the Invaluable, The Economic Value of Family Caregiving AARP. (2015, June). Caregiving in the United States. 3 AARP. (2015, July). Valuing the Invaluable, The Economic Value of Family Caregiving 4 AARP. (2015, July). Valuing the Invaluable, The Economic Value of Family Caregiving 5 Houser, A & Ujvari, K. (2012). Measurement of Respite Care. AARP Public Policy Institute. Note: Due to definitional differences between sources, as well as between states, data may not be comparable across states and should not be used for comparative purposes. 6 Metlife Study. (2010). Working Caregivers and Employer Health Care Costs. 7 Metlife Study. (2010). Working Caregivers and Employer Health Care Costs. 8 Metlife Study. (2010). Working Caregivers and Employer Health Care Costs. 2
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hospitalizations and nursing home admissions, thus saving the cost of formal care. One study revealed cost reductions using Medicaid records of children with autism found that $1,000 of respite care reduced the risk of hospitalization by 8%.9 Another study found that monthly hospital inpatient days and outpatient days significantly decreased after a child’s first involvement in palliative hospice respite care.10 Lastly, informal basic personal care was found to reduce nursing home use by about 60% for disabled Americans aged 70 and older, but the study found no significant reduction in admissions when help was measured more broadly to include assistance with chores and errands.11 Overall, a challenge with understanding the impact of respite care on patient and caregiver outcomes is partly due to the lack of a common definition for respite care within the long term services and supports (LTSS) system. Respite care is one of the most commonly requested caregiver support services; however, definitions of respite care vary among programs and states, making comparisons difficult.
Considerations for the Task Force to Improve Understanding of the ROI of Respite Care:
Researching state models where spending per capita is much higher than in Colorado may provide some useful insights into policy changes or implementation changes that could be made in Colorado. Explore efforts on the impact of policy reforms that encourage workforce employment programs benefiting caregivers, including the need for flexibility in the workplace and in policies that would benefit working caregivers. Explore the need for a common definition and unit of measurement for respite care (at the federal and state levels) as a useful indicator of LTSS system performance. Explore the planning and implementation of pilot studies that could help to clarify definitions of respite care, its various services, and the main outcomes that should be measured, such as caregiver quality of life or institutionalization rate.
Return on Investment Research Findings: Number of Family Caregivers and the Economic Value of Caregiving in Colorado
An estimated 43.5 million adults in the United States have provided unpaid care to an adult or a child in the prior 12 months (2014).12 The estimated prevalence of caring for an adult is 16.6%, or 39.8 million Americans.13 Approximately 34.2 million Americans have provided unpaid care to an adult aged 50 or older in the prior 12 months (2015).14 (All populations) In 2013, about 40 million family caregivers in the United States provided an estimated 37 billion hours of care to an adult with limitations in daily activities.15 (All populations) The estimated economic value of caregivers’ unpaid contributions was approximately $470 billion in 2013, up (4.4%) from an estimated $450 billion in 2009.16 (All populations) In Colorado, there are an estimated 584,000 caregivers providing 543 million care hours ((929.8 hours per caregiver per week) in economic value per hour of $13.68 (higher than
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Mandell, D.S., et al. (2012). The interplay of outpatient services and psychiatric hospitalization among Medicaidenrolled children with autism spectrum disorders. Arch Pediatr Adolesc Med, 166 (1): 68-73. 10 Pascuet E., et al. (2010). A comparative cost-minimization analysis of providing pediatric palliative respite care before and after the opening of services at a pediatric hospice. Healthcare Management Forum, 23 (2): 63-66. 11 Mason, A. et al. (2007). The effectiveness and cost-effectiveness of respite for caregivers of frail older people. J Am Geriatr Soc, 55(2): 290-9. 12 AARP defines “caregiver” as someone who provides care for more than 21 hours per week. 13 Prevalence was determined by adding the estimated 13.9% caring for an adult only plus the 2.7% caring for both a child and adult to get the total prevalence estimate of caring for an adult. 14 AARP. (2015, June). Caregiving in the United States. 15 AARP. (2015, July). Valuing the Invaluable, The Economic Value of Family Caregiving 16 The economic value of one hour of care was estimated at the state level as the average of the state minimum wage, median home health aide wage, and median private pay cost of hiring a home health aide (AARP, 2015)
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the United States rate of $12.51 per hour), therefore $7.4 million in total economic value as of 2013.17 In the United States, the average value per hour ranges from $10.53 in Louisiana to $15.05 in Alaska.18 (All populations) While estimates of the economic value of informal caregiving vary, it is generally recognized that the market value of the unpaid labor of family care is greater than the cost of paid home care assistance.19
Spending on Respite Care
In Colorado, a total of $1,557,252 was spent on respite care in 2007. 45.8% of this spending was in Medicaid Respite Spending (MAX) and 54.2% of this spending was part of the National Family Caregiver Support Program. No money was spent in State-Funded Respite (single service programs). 20 (All populations) In Colorado, respite spending per capita was $2.72 per caregiver (2007 data).21 (All populations)
Financial Cost
Nationally, the cost to employers of absenteeism, workplace disruptions, and reduced work status of working family caregivers suggest that businesses lose between $17.1 and $33.6 billion per year. These costs are due primarily to absenteeism ($5.1 billion), shifts from full-time to part-time work ($4.8 billion), replacing employees ($6.6 billion), and workday interruptions ($6.3 billion). 22 (Elder Care) There is an 8% differential in increased health care costs between caregiving and noncaregiving employees, potentially costing U.S. employers an extra estimated $13.4 billion per year. Excess medical costs reached almost 11% for blue-collar caregivers and over 18% for male caregivers.23 (Elder Care) In terms of caregiving costs, 13% of caregivers stated the economic downturn caused them to spend more on caregiving expenses.24 (All populations) Six out of 10 caregivers who reported increasing their caregiving spending also reported having difficulty paying for their own basic necessities.25 (All populations) Total wage, social security, and private pension losses due to caregiving could range from $283,716 for men to $324,044 for women, or $303,880 on average for a typical caregiver.26 When this $303,880 amount is multiplied by the 9.7 million27 people age 50+ caring or their parents, the amount lost is $2,947,636,000,000, or nearly $3 trillion.28 (Elder Care)
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AARP. (2015, July). Valuing the Invaluable, The Economic Value of Family Caregiving. Note: At the state level, the economic value was calculated as (number of caregivers in 2013) × (hours of care per caregiver per week) × (52 weeks/year) × (economic value of one hour of family care). 18 AARP. (2015, July). Valuing the Invaluable, The Economic Value of Family Caregiving 19 Feinberg, L. F., Wolkwitz, K., & Goldstein, C. (2006). Ahead of the Curve: Emerging Trends and Practices in Family Caregiver Support. Washington, DC: AARP Public Policy Institute. 20 Houser, A & Ujvari, K. (2012). Measurement of Respite Care. AARP Public Policy Institute. Note: Due to definitional differences between sources, as well as between states, data may not be comparable across states and should not be used for comparative purposes. 21 Houser, A & Ujvari, K. (2012). Measurement of Respite Care. AARP Public Policy Institute. Note: Due to definitional differences between sources, as well as between states, data may not be comparable across states and should not be used for comparative purposes. 22 Metlife Study. (2006). The MetLife Caregiving Cost Study: Productivity Losses to U.S. Business. Note: This is the primary resource on the cost effects of caregiving on business and industry. 23 Metlife Study. (2010). Working Caregivers and Employer Health Care Costs. 24 NAC and Evercare. 2009. The Evercare Survey on the Economic Downturn and its Impact on Family Caregiving. 25 NAC and Evercare. 2009. The Evercare Survey on the Economic Downturn and its Impact on Family Caregiving. 26 Metlife Study. (2011). The Metlife Study of Caregiving Costs to Work Caregivers: Double Jeopardy for Baby Boomers Caring for their Parents 27 The figure, 9.7 million parental caregivers, is derived by multiplying the percentage of HRS survey respondents who provided basic and/or financial help to a parent, by the 2008 Census population estimates for their respective age groups and the estimated proportion of adults having a living parent.
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The direct costs to the caregiver of providing care is estimated at $5,53129 per year for out-of-pocket expenses. Out-of-pocket expenses may also present more of a financial burden to women than men.30 (Elder Care)
Health Cost of Caregiving
Employees providing elder care were more likely to report fair or poor health in general. Employees providing elder care were significantly more likely to report depression, diabetes, hypertension, or pulmonary disease regardless of age, gender, and work type. Elder care demands were associated with greater health risk behaviors, including smoking and alcohol use. Employed caregivers find it more difficult than non-caregivers to take care of their own health or participate in preventive health screenings. Younger caregivers (age 18 to 39) demonstrated significantly higher rates of cholesterol, hypertension, chronic obstructive pulmonary disease (COPD), depression, kidney disease, and heart disease in comparison to non-caregivers of the same age.31 (Elder Care) Three-fifths of caregivers reported fair or poor health status, one or more chronic conditions, or a disability, compared with one-third of non-caregivers. Chronic conditions included heart attack/heart disease, cancer, diabetes, and arthritis. Caregivers reported chronic conditions at nearly twice the rate of non-caregivers (45% vs. 24%).32 (All populations) Often mischaracterized as an “older worker” issue, demographic trends indicate that a greater number of employees of all ages will assume the role of family caregiver with an increasingly older population. The results demonstrate a clear impact of eldercare burdens on the health issues facing employees ages 18 to 39, as much as those ages 50 and older.33 (Elder Care) Six in 10 caregivers are workers, and during this current economic downturn, 50% of them are less comfortable with taking time off from work to care for a family member or friend. A similar percentage (51%) says the economic downturn has increased the amount of stress they feel about being able to care for their relative or friend.34 (All populations) Half of all caregivers say the economic downturn has increased the amount of stress they feel about being able to care for their relative or friend (51%). 35 (All populations)
Health Benefits of Respite Care Services
A 2014 review of outcome research on respite has revealed that differences in methodologies, respite definitions, and targeted populations have resulted in a divergence of conclusions about the benefits of respite for certain population groups.36 Many of the articles describe research that concludes that reductions in family caregiver stress and burden, improved quality of life and well-being for both caregivers and care recipients, reduced need for out-of-home placements, and reduced risk for abuse and neglect may be associated with use of a variety of models and modes of delivery of
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Metlife Study. (2011). The Metlife Study of Caregiving Costs to Work Caregivers: Double Jeopardy for Baby Boomers Caring for their Parents 29 Houser A, Gibson MJ, Valuing the Invaluable: The Economic Value of Family Caregiving, 2008 Update. AARP Public Policy Institute, Insight on the Issues, 13. Washington DC: AARP November 2008. 30 Evercare and National Alliance for Caregiving. Family Caregivers — What They Spend, What They Sacrifice. Minnetonka, MN: Evercare & Bethesda, MD: NAC, 2007. 31 Metlife Study. (2010). Working Caregivers and Employer Health Care Costs. 32 Ho, A., et al. (2005). A look at working age caregivers’ roles, health concerns, and need for support. The Commonwealth Fund. 33 Metlife Study. (2010). Working Caregivers and Employer Health Care Costs. 34 NAC and Evercare. 2009. The Evercare Survey on the Economic Downturn and its Impact on Family Caregiving. 35 NAC and Evercare. 2009. The Evercare Survey on the Economic Downturn and its Impact on Family Caregiving. 36 ARCH National Respite Network and Resource Center. (2014). Annotated Bibliography of Respite and Crises Care rd Studies, 3 Edition.
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respite and/or crisis care programming. Conversely, other articles did not find similar positive associations. Some of the articles’ conclusions are not entirely favorable in terms of providing clear and compelling evidence that respite or crisis care programs achieve certain outcomes. (All populations) A 2010 review of respite care studies found significant quantitative changes in parent stress. However, the study notes the lack of research in several important areas including: “the influence of respite care upon the families of disabled children and abuse potential,” “the interrelationships between respite care, child abuse potential, family relations, and parenting stress over time,” and “effective models of respite care for individuals with developmental disabilities and severe behavioral problems.” More research is needed in these areas, as well as research exploring the availability and use of respite care.37 (Children with Disabilities) It is difficult to make recommendations as to the most appropriate form of delivery of respite, apart from the suggestion that a range of services is probably most appropriate, to provide flexibility of respite provision and responsiveness to caregiver and care recipient characteristics and needs and also changes in those needs over time. There is a need for further high-quality larger trials that include economic evaluation.38 (Elder Care) Preferences for type of respite care were dependent on a number of factors and perhaps more important than any particular type of respite provision was a need for flexible respite services that are responsive to changing caregiver needs, which might include a range of different services. A number of studies in the review provided a range of services such as day care and home care, day care and institutional care, as well as a range of other services likely to provide some respite such as domestic help and personal care services. It would be appropriate for service providers to carry out assessments of needs and preferences before developing services.39 (Elder Care) The outcomes that arose as indicators of the positive impact of respite on caregiver well-being were depression, burden, morale, anger and hostility. Anxiety was unaffected by respite provision and quality of life was worse after respite care. Rates of institutionalization were higher after respite provision, but this is likely to be a result of the characteristics of those accessing respite, rather than an outcome of respite per se. There was some evidence to suggest that longer interventions had greater benefits for caregivers. The review did not find any evidence of negative effects of respite on care recipients or any consistent evidence for positive effects, although outcome measurement for care recipients is inadequately addressed and requires further definition.40 (Elder Care) This review provides some evidence that respite for caregivers of frail elderly people may have a small positive effect upon caregivers in terms of burden and mental or physical health. Caregivers were generally very satisfied with respite. No reliable evidence was found that respite care either delays entry to residential care or adversely affects frail older people. Economic evidence suggests that day care is at least as costly as usual care.41 (Elder Care) An evaluation of program42 for older caregivers revealed that the most useful aspect of the program including respite, along with visit/support from the program staff and
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Strunk, J.A. (2010). Respite care for families of special needs children: A systematic review. J Dev Phys Disabil, 22: 615-630. 38 Shaw, C., et al. (2009). Systematic review of respite care in the frail elderly. Health Technology Assessment, 13: 20. 39 Ibid. 40 Ibid. 41 Mason, A. et al. (2007). The effectiveness and cost-effectiveness of respite for caregivers of frail older people. J Am Geriatr Soc, 55(2): 290-9. 42 A 22-month old Red Cross program in Western Australia designed to provide help for older caregivers of adults with disabilities through home visits, development of integrated care plans, encouragement of regular planned respite, referrals to needed service providers, and access to a database of volunteers.
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information giving. When asked to provide feedback on the quality of the program and satisfaction, the overwhelming majority of older caregivers provided high positive rating. The overwhelming majority also said the program had a positive impact on their role as a caregiver. However, when caregivers living in rural areas were compared to those living in metropolitan areas, the study found differences in satisfaction with services, access to respite services, and perceptions of needs being met. Specifically, rural older caregivers reported lower satisfaction with the program, lack of respite services, staffing problems, and only 28% of caregivers in rural areas said their needs had been met, compared to 80% of the metropolitan caregivers.43 (Adults with disabilities) Cost Effectiveness of Respite Care
Economic evidence suggests that day care is at least as costly as, and may be more expensive than, usual care. The cost-effectiveness of in-home respite, institutional respite, host-family respite, respite packages, and video respite remains unclear, as does the cost-effectiveness of adding respite to a multidimensional package of care. The existing evidence base does not allow any firm conclusions on effectiveness or costeffectiveness to be drawn, and is unable to inform current policy and practice. 44 (Elder Care) Research has been undertaken to see if respite care reduces hospitalizations and nursing home admissions, thus saving the cost of formal care. One study that revealed reductions using Medicaid records of children with autism found that $1,000 of respite reduced the risk of hospitalization by 8%.45 Another study found that monthly hospital inpatient days and outpatient days significantly decreased after child’s first involvement in palliative hospice respite care.46 Lastly, informal basic personal care was found to reduce nursing home use by about 60% for disabled Americans age 70 and older, but found no significant reduction in admissions when help was measured more broadly to include assistance with chores and errands.47 Family caregiving could be a less expensive option than relying on home health or assisted living facilities to care for older adults. Paying a family caregiver $8 per hour for an average of 20 hours per week for 52 weeks a year equals $8,320 per caregiver per year. A reasonable rate and a reasonable number of hours per week could be established to incentivize caregivers to work, but to also care for an aging family member. Home health-care rates are roughly $19.50 per hour; family caregiving could be established at a rate less than home health-care rates.47 In contrast, care for older adults in institutional settings is significantly more expensive; assisted living generally costs an average of $3,200 per month, and nursing facilities cost approximately $6,000 per month.48
Strategy Notes and Recommendations
Policy reform to encourage workforce employment programs benefiting caregivers, including the need for flexibility in the workplace and in policies that would benefit working caregivers. This may not be occurring because health care plans and insurance
43
Hancock, P.J., Jarvis, J.A., and L’Veena, T. (2007). Older Carers in Ageing Societies: An Evaluation of a Respite Care Program for Older Carers in Western Australia. Home Health Care Services Quarterly, 26 (2): 59-84. 44 Mason, A. et al. (2007). The effectiveness and cost-effectiveness of respite for caregivers of frail older people. J Am Geriatr Soc, 55(2): 290-9. 45 Mandell, D.S., et al. (2012). The interplay of outpatient services and psychiatric hospitalization among Medicaidenrolled children with autism spectrum disorders. Archives of Pediatric and Adolescent Medicine, 166 (1): 68-73. 46 Pascuet E., et al. (2010). A comparative cost-minimization analysis of providing pediatric palliative respite care before and after the opening of services at a pediatric hospice. Healthcare Management Forum, 23 (2): 63-66. 47 LaSasso, A.T., & Johnson, R.W. (2002). Does informal care from adult children reduce nursing home admissions for the elderly? Inquiry, 39, 279-297. 48 AARP, Genworth, 2009 Cost of Care Survey, in CDHS, Colorado State Plan on Aging report.
15
49
companies also need to understand the return on investment of respite care services, either as part of a wellness program or other program. For example, Kaiser encourages companies to have a wellness program, but they provide no additional incentives for a company to do so. Currently, there are only a few states with paid family and medical leave, but this policy would benefit working caregivers who need to take leave to care for an aging parent. Develop a common definition and unit of measurement for respite care (at the federal and state levels) as a useful indicator of long-term service and supports system performance. Respite care is one of the most commonly requested caregiver support services; however, definitions of respite vary among programs and states, making comparisons difficult. The recently-released report from ARCH National provides a list of federal definitions of respite, and the following definition for respite: Respite is planned or emergency services that provide a caregiver of a child or adult with a special need some time away from caregiver responsibilities for that child or adult, and which result in some measurable improvement in the well-being of the caregiver, care receiver, and/or family system. The lack of evidence for the impact of respite care suggests a need for pilot studies. Pilot studies could identify one or more target groups (i.e. caregiver and care receiver dyads) suitable for study; establish clear definitions of the services to be compared; and determine the main outcomes to be measured, such as caregiver quality of life or institutionalization rate.49 Nebraska has developed a plan to evaluate the return on investment for its respite care services.
Mason et al, 2007.
16
Proposed Research Study Because there is a lack of solid research on the value and return on investment of respite services, both nationally and in Colorado, the Task Force may be interested in making a recommendation to the legislature for a pilot study that collects these kind of data and develops systems and protocols to collect data in an ongoing fashion in the future. The following provides information about what such a study could look like, including potential research questions, potential study designs, and potential data collection methods. A number of audiences would be interested in findings from such a study, including the legislature, state departments such as CDHS and HCPF, private insurance plans, employers, providers of respite, and family members and care recipients. Potential Research Questions Depending on priorities, the study could be designed to answer some of the following questions: 1. Does the provision and increased utilization of quality respite services result in improved health and/or quality of life for the care giver and/or the care receiver? a. For which care givers and care receivers are the benefits greatest? b. Which types of services results in the greatest benefits? 2. Is the provision of these services cost-efficient, when all measurable costs are taken into account? a. What kinds of costs are avoidable/preventable with the provision of adequate, quality, disability and culturally competent care (i.e., are emergency room costs reduced, is institutional care avoided or delayed)? 3. What other benefits are realized with the provision of the right kinds of respite services, either to the care receiver, the care giver, the family, or the community? a. Economic impacts on the family or community? b. Impacts on the family stability and/or relationships? 4. What else helps increase appropriate utilization of respite services? a. To what degree does a public awareness campaigns increase appropriate utilization of respite services? b. To what degree does additional disability competence training of providers increase utilization of services? 5. What barriers continue to prevent appropriate and needed access to respite services? 6. To what degree are care givers and care receivers satisfied with respite services? 7. What kinds of data and measures should be collected on an ongoing fashion to continue to measure the value, quality, and impacts of respite services? Possible Study Designs and Areas of Focus Depending on the research questions, the research study could include:
A cost-benefit and cost-effectiveness components that measure overall costs of respite, costs that should be expected to have occurred if the respite had not been provided, costs across systems (both of providing the respite and costs that would have occurred without the respite), as well as outcomes for the caregiver and the care receiver; An examination of the impact of raising awareness of the availability of respite, raising awareness of caregivers as caregivers and as people who may need respite, on utilization and on outcomes; and An examination of the impact of providing additional training to respite providers, on utilization and on outcomes.
The study could examine existing respite services and focus on collecting comprehensive data to examine the current status of respite services. Alternatively, the study could be the study of 17
a pilot, which could provide more respite services, a public awareness campaign, additional training of respite providers, or all of these. Then the study would examine outcomes of this enhanced set of services to determine whether these are effective and cost-effective. In any case, the study should utilize a mixed method approach, which would include both qualitative and quantitative methods. It should also include measurement of both process and outcome measures. It should also incorporate existing measures as possible, and should work to link available data across systems. The design should be a quasi-experimental design, if possible, particularly if a pilot approach is used, which would allow the study to look at changes based on the pilot. If the study does not examine a pilot program, but rather examines current services, the study would be non-experimental, which is nonetheless valuable. Possible Measures and Data Collection Methods Some of the data for a study are already collected, but much of it is not. In cases in which data are being collected, it is not being linked across systems of care, nor across areas of interest. For example, utilization of respite services by an individual who receives services via a Medicaid waiver is not linked to hospitalizations or emergency department use of their caregiver. Depending on the research questions and decisions about whether to study existing services or a pilot of enhanced services, measures of interest and data collection methods may include: Research Question Does the provision and increased utilization of quality respite services result in improved health and/or quality of life for the caregiver and/or the care receiver?
Measures and Methods Utilization of health care services by caregiver and care receiver, including ED, hospital, and primary care Measures of health care outcomes for caregiver and care receiver, possibly including appropriate HEDIS measures and NQF measures
Measures of quality of life for the caregiver and care receiving, such as the Centers for Disease Control’s Healthy Days Core Module For which caregivers and care receivers are Using measures of caregiver and care receiver the benefits greatest? demographics (including age, race, gender, zip code, family size, etc.) and baseline health and functional status, including physical and behavioral health, and outcome measures noted above, explore differences in outcomes among caregivers, care receivers, families, and communities Which types of services results in the Using measures of utilization of respite services, measures greatest benefits? of demographics and health and functional status, as well as health outcome measures, explore differences in benefits relative to different services and types of services (i.e., location, provider type, competencies of the providers, etc.) Is the provision of these services costMeasures may include: caregiver and care receiver efficient, when all measurable costs are emergency department utilization and costs; caregiver and taken into account? What kinds of costs are care receiver inpatient hospital utilization and costs; avoidable/preventable with the provision caregiver and care receiver 30-day hospital readmissions of adequate, quality, disability and and costs; care receiver institutionalization (i.e., Regional culturally competent care (i.e., are Centers, nursing facilities) or incarceration emergency room costs reduced, is institutional care avoided)? What other benefits are realized with the Measures should include interviews with caregivers, care provision of the right kinds of respite receivers (as appropriate), and other family members to services, either to the care receiver, the explore additional benefits; interviews with health care caregiver, the family, or the community? providers and case managers to explore additional unanticipated benefits Economic impacts on the family or Measures should include self-reports of income and community? employment status of caregivers, employment status, and 18
their perceptions of the impact of care giving and respite services on their employment status and income Impacts on the family stability and/or Measures should include interviews with caregivers and relationships? care receivers (as appropriate) about their perceptions of the impacts of care giving and respite services on their family stability, relationships, social supports, and perceived mental health; could also use validated survey tools such as the Family Stressful Life Events Screener, the Social Network Index or the Kendler Social Support Interview (which are designed to measure social support), measures of depression such as the PHQ-2/PHQ-9, incidents of abuse or neglect What else helps increase appropriate Measure visibility of the public awareness campaign; utilization of respite services? measure perceived impact of campaign, including changes To what degree does a public awareness in knowledge and awareness about being a caregiver and campaigns increase appropriate utilization about respite services, attitudes toward respite services, of respite services? To what degree does and behaviors around accessing respite services additional disability competence training of Measure changes in perceived competence and skills of providers increase utilization of services? respite providers among caregivers and care receivers (as appropriate), including intention to use (and actual use of) respite services What barriers continue to prevent Measures should include interviews with caregivers and appropriate and needed access to respite care receivers (as appropriate) to explore additional, services? potentially unknown or emerging barriers To what degree are caregiver and care Measures should include interviews with caregivers and receivers satisfied with respite services? care receivers (as appropriate) and could also include validated or adapted satisfaction tools What kinds of data and measures should be Answers to this question will emerge from the findings of collected on an ongoing fashion to continue the study, and from the process of collecting data for the to measure the value, quality, and impacts study. Measures that are most feasible, least burdensome, of respite services? most relevant, and most actionable should be selected as measures to retain over the long term Resources Needed to Conduct Study If it is determined that a study should be conducted, a number of resources will be needed to effectively implement the study. One of the most important is a shared vision of shared data, and an ability to dedicate resources to sharing such data. This will require data-sharing agreements, the ability to transfer data across systems, and linking systems. These require time, staffing resources, and often financial resources. A second necessary resource is that of a project manager. This person should have expertise in managing research projects as well as expertise in the Colorado health care landscape, and in respite services. To undertake the research, additional staff are needed who have research expertise, either as staff or as part of a contract with an external research firm to conduct the study. Depending on the design, the study will take at least one year to complete. However, a longer time period will be required to measure medium term and longer term outcomes. Outcomes of the Study While exploring the research questions of interest will be important outcomes of the study, other important outcomes include using the findings to improve respite services, access to respite services, and the system of service delivery for respite services. Therefore, the research study should include a rapid-cycle component that allows findings to be used to improve the system and services as the findings emerge. Findings should be shared with stakeholders as they are available, including legislators, providers, families, and communities. 19
Another important outcome of the study should be a plan for sustaining pieces of the data collection over time, incorporating the measurement and data collection methods into the systems of care, and, if a pilot project was utilized in the first round of research, replicating the measurement and data collection across the state. Challenges and Limitations of a Study Every study has limitations and challenges. A study examining these types of questions will have many challenges, because the definition of respite is unclear, service provision is often unmeasured, and outcomes and impacts cross life domains and are associated with different individuals (the caregiver and the care receiver) as well as different “units of analysis” including the individual, the family, the community, the state, the system of funding, the system of care, and other systems of care. Therefore, it will be critical to set clear parameters and limitations for the study, collect diverse data elements to ensure that issues are examined from a variety of perspectives, and use caution in interpretation, as many factors (which should be explored, to the degree possible) may cause the changes that are observed.
20
Logic Model Target Population and Needs Target Population: Caregivers and “care receivers” Needs: A variety of anecdotal evidence and limited studies strongly suggest that respite services have a positive impact on caregivers, care receivers and reduce unnecessary and avoidable health care costs; and that the demand for quality, disability competent respite services is not met by the current supply and funding. There is a need to understand the positive impacts across multiple levels, to more rigorously measure the gap between supply and demand, and the reasons for these gaps across the state and across the lifespan, and to measure possible long term cost savings and improvements in health and quality of life.
Activities
Outputs/Process
Respite services provided within pilot study area, funded by any source (including non-paid respite), provided by any known resource
Respite Services: # of hours and dollars of respite provided by population, zip code # of care receivers whose caregiver received respite # of caregivers who received respite Type of respite provided Skills of respite providers # of hours of respite not provided and reasons it was not provided Types of resources made available to caregivers and care receives about the availability of services Awareness Campaign: Measures of visibility of the campaign
Option 1: measure within an existing system without making any changes to it; Option 2: provide additional respite services, additional training, additional funding (or some combination of these) and measure changes Awareness Campaign: Awareness campaign about caregivers needing respite and the availability of respite Enhanced Training: Provide enhanced training to respite providers on disability competence and cultural competence
Enhanced Training: Measures of training provided, to whom, type of training
Short Term Outcomes Care Receiver and Care Receiver: Greater awareness of respite resources and the value of respite More respite available and accessed when needed Satisfaction with respite services Improved mental health and reduced stress (self-report) System Costs: Reduction in ED visits and inpatient hospitalizations
Medium Term Outcomes Care Receiver: Reduction in institutionalization s Stabilization of living situation Improved social supports and family relationships
Awareness Campaign: Utilization of respite services increases
Caregiver: Continued improved mental health and reduced stress Improved family relationships Improved social supports and relationships Employment and income stability
Enhanced Training: Availability of competent, trained respite providers increases; utilization of services increases
System Costs: Reduction in costs associated with crisis use of ED, delayed or avoided institutional care
Long-Term Outcomes and Vision Care Receiver: Quality of life is improved Health is improved Caregiver: Quality of life is improved Health is improved System Costs: Avoidable costs, such as reductions in hospitalizations of the caregiver due to stress or reductions in institutionalization of the care receiver due to caregiver illness or stress Families and communities are more able to care for individuals in the community
21
Research on Funding In Colorado, funding sources for respite care services include:
Medicaid (CDASS and HSS) Lifespan Respite Grant House Bill 1226 Older Americans Act National Family Caregiver Support program (NFCSP) Caregivers and Veterans Omnibus Health Services Act of 2010 Foundations (i.e. Daniels Fund, United Way)
Other State Models Interviews were held with Wisconsin, North Carolina, Kansas, Ohio, Wyoming, Delaware, and Nebraska. Innovative funding approaches from Tennessee and Nebraska were identified and summarized below. 1. Tennessee Respite Coalition used multiple funding sources, including the Tennessee Department of Mental Health and Substance Abuse and the Commission on Aging and Disability (Lifespan Respite grant funds), we well as two local foundation sources to support a respite voucher program. The respite vouchers, with a maximum value of $600 per year, allows family caregivers to purchase their own planned or emergency respite services (Vouchers are also used in Alabama, Delaware, Illinois, North Carolina, Nevada, Oklahoma, Pennsylvania, South Carolina, and Virginia, and each program differs in how they operationalize the vouchers; for example, some states do it through a state agency, while some states use vouchers only for emergency respite). Utilization of respite care is caregiver-driven, in that the caregiver hires their own provider, documents the service, and submits a reimbursement request. The multiple funding sources support a $316,000 budget, including $162,000 in actual vouchers. The remaining budget is dedicated to overhead, administration, and evaluation of respite care services. The vouchers fill a need in Tennessee by serving families that do not meet the stricter income eligibility requirements of Medicaid waiver programs. There is a waitlist for certain populations, as each funding source seeks to serve a different population. They evaluate the impact of the voucher program. 2. Tennessee implemented a partnership with a local home care company who was interested in donating respite care services as part of their corporate social responsibility strategies. Tennessee respite care network would refer caregivers to the home care company for respite services. Despite the perception that it was a sound model, communication barriers and the capacity of the home care company to serve both their paying caregivers and those interested in donated time was insufficient. 22
Tennessee feels it could be successful model with the right partners, incentives, and provider capacity. 3. Tennessee received funding from the Corporation for National and Community Services (CNCS) to implement a Senior Companion Program, to provide respite and expand less costly respite using volunteers. Tennessee worked with CNCS to educate them about respite care and how it could be an important outcome of the Senior Companion Program. As a result, CNCS is currently administering a national caregiver assessment survey to caregivers involved in Senior Companion program throughout the United States. The CNCS. The program budget is $48,276 a year from the CNCS, includes $33,000 for volunteer stipends, travel, and meals. The program includes 14 volunteers actively serving 18 or 19 families at any one time, and throughout the year, serve a total of 40 and 50 families. 4. Explore other sources of state revenue for caregiver services, such as casino funds (New Jersey) and tobacco settlement funds (Nebraska). In Nebraska, the tobacco settlement funds provides $810,000 per year for families to purchase respite. It provides up to $125 per month for those eligible, with eligibility having less strict income standards. Access to the tobacco funds required extensive advocacy efforts, which started back in the mid1990s. They identify key legislators who were champions and raised awareness across the state to respite services, creating a base of support among caregivers. Advocacy required enough data and supporting documentation that caregivers needed respite, as well as show the cost savings to Medicaid system. Overall, they need the right skill sets, overall awareness, data, and champions to garner the support. 5. Nebraska DHHS awards grants to six local entities (one in each Service Area) with Respite Coordinators who are responsible for Information and Referral for families needing access to respite, recruitment of respite providers, marketing activities to increase the public's awareness of respite, coordinating training opportunities for providers and consumers, and quality assurance and program evaluation. Nebraska funds respite services in multiple ways, including grants via a State Department of Education IDEA Part C grant program50, which supports early intervention services for infants and toddlers from birth through age two and their families, and a Social Services Block Grant. Nebraska also works with its Division of Behavioral Health to collaborate on a SAMHSA grant for Cooperative Agreements for Expansion and Sustainability of the Comprehensive Community Mental Health Services for Children with Serious Emotional Disturbances (SED). Nebraska learned about this grant opportunity via ARCH Respite Network, and forwarded it to DBH to learn they were already working on a proposal. As a result, Nebraska Respite Network was invited to take part in the proposal development.
50
The IDEA Part C grant program supports early intervention services for infants and toddlers birth through age two and their families.
23
6. Some states are working with insurance companies to support respite care services via paid family leave insurance programs (i.e. California). Tennessee is also in the early stages of including insurance companies in discussions for respite care services. 7. Additionally, 22 states help family caregivers with their financial burdens by providing tax credits or deductions. Other Notable Resources and References
Lifespan Respite Technical Assistance Center via ARCH National Respite Network provides a table on Financing Strategies for Lifespan Respite Programs and State Respite Coalitions, which provides examples of approaches to support respite care services.51 SAMHSA’s report titled “Crisis Services: Effectiveness, Cost-Effectiveness, and Funding Strategies” offers a review of state funding approaches to crisis care services, including respite. The report summarizes the evidence base on the clinical effectiveness and costeffectiveness of different types of crisis services, and then presents case studies of different approaches that states are using to coordinate, consolidate, and blend fund sources in order to provide robust crisis services. Massachusetts, Tennessee, Missouri, and Texas have all supported respite care services using integrated and collaborative funding strategies.52
51
ARCH National Respite. Financing Strategies for Lifespan Respite Programs and State Respite Coalitions, available at http://lifespanrespite.memberlodge.org/Resources/Documents/Sustainability_Toolkit/Financing_Strategies.pdf 52 SAMHSA. (2014). Crisis Services: Effectiveness, Cost-Effectiveness, and Funding Strategies. Available at http://store.samhsa.gov/shin/content/SMA14-4848/SMA14-4848.pdf
24
Research on Colorado Supply and Demand and Access to Respite Across the Lifespan Medicaid Respite Service Utilization and Service Provision HCBS Waivers There were 2,380 Medicaid clients who received respite services through a Medicaid waiver during state fiscal year 2015 (FY 2014-15). Of these clients, 44.16% of them were female. The average age of these clients as of January 1, 2015, was 30.93 years. The majority of clients were 22 to 64 years old, with a significant number of clients aged between 6 and 21 years old. This utilization pattern suggests that the bulk of Medicaid waiver respite services are used by younger clients with a disability, a fact further supported by the waiver enrollment data presented below. Table 1 displays a detailed overview of the ages of client receiving waiver respite services. Table 1: Ages of Clients Receiving Waiver Respite Services Client Age by Category Age Category
Number of Clients
0-5
115
6-21
958
22-64
1,014
65-74
72
75-84
101
85+
120 Mean
Average age
30.93
Median 23
These clients received a mean of 313 hours of respite services during the fiscal year, at an average total cost of $4,312 per client. The mean and median utilization per client per fiscal year are displayed in Table 2.
25
Table 2: Average Medicaid Waiver Respite Services Utilization in FY 2015 Mean Average Number of Hours per Year Average Total Cost per year
Median
313
180
$4,312
$ 2,500
Of clients receiving waiver respite services, roughly 47% received respite services while enrolled in the Supported Living Services waiver for individuals with an intellectual or developmental disability. Table 3 provides a detailed overview of the number of clients in each waiver who received respite services. Table 3: Enrolled Waiver for Clients Receiving Waiver Respite Services Waiver Brain Injury Waiver Children with a Life Limiting Illness Children's Extensive Supports
Clients Receiving Respite * 57 770
Community Choice Transitions
*
Community Mental Health Supports
*
Elderly, Blind and Disabled Waiver
406
Spinal Cord Injury Waiver
*
Supported Living Services
1,130
*Brain Injury, Community Choice Transitions, Community Mental Health Supports, and Spinal Cord Injury Waiver Combined for HIPAA Compliance
35
Note: Numbers sum to more than the number of clients, since there were 18 clients who received waiver respite services in more than one waiver during FY 2014-15. Clients in the Elderly, Blind, and Disabled waiver used the most hours of waiver respite services on average (mean of 362 hours, median of 312 hours), followed closely by clients on the Children’s Extensive Supports waiver (mean of 353 hours, median of 184 hours). The differences in the mean and median values suggest that there are a number of clients receiving significantly higher hours of support. Clients in the Children with a Life Limiting Illness waiver 26
used significantly fewer hours of waiver respite services (mean of 72 hours, median of 60 hours). Table 4 provides the detailed figures for each waiver. Table 4: Average Hours of Waiver Respite Service by Waiver Average Hours of Respite Services by Waiver Mean Brain Injury Waiver
Median
*
*
72
60
353
184
Community Choice Transitions
*
*
Community Mental Health Supports
*
*
362
312
Spinal Cord Injury Waiver
*
*
Supported Living Services
276
141
*HIPAA Combined
482
395
Children with a Life Limiting Illness Waiver Children's Extensive Supports
Elderly, Blind and Disabled Waiver
Clients in the Children’s Extensive Supports (CES) waiver used the most waiver respite services when measured by the cost. The average (mean) cost of waiver respite services used by clients in the CES waiver was about $5,511 per year. Client in the Supported Living Services waiver received waiver respite services costing $4,619 per year, on average (mean). Table 5 shows the average dollars of waiver respite services by waiver.
27
Table 5: Average Dollars of Waiver Respite Services by Waiver Average Dollars of Respite Services by Waiver Mean Median Brain Injury Waiver
*
*
Children with a Life Limiting Illness Waiver
1,482
1,058
Children's Extensive Supports
5,511
3,988
Community Choice Transitions
*
*
Community Mental Health Supports
*
*
1,728
1,518
Spinal Cord Injury Waiver
*
*
Supported Living Services
4,619
2,728
*HIPAA Combined
2,630
1,779
Elderly, Blind and Disabled Waiver
In order to help identify gaps in the provision of services, HMA looked the amount of respite services that were authorized in FY 2014-15 through a review of PAR data. HMA was provided data on all prior authorized respite services for periods that included FY 2014-15. Some of the periods covered by the prior authorizations fell outside the fiscal year. In order to limit the analysis to the state fiscal year, HMA assumed that authorized respite services were evenly spread over the course of the authorized period and included only respite services that fell within FY 2014-15 in the analysis. HMA was advised by HCPF that the authorized amount contained in the prior authorization data was not reliable. For that reason, HMA matched the authorized service up to the reimbursement rates in effect during FY 2014-15. For some services the unit of service is a dollar, indicating that the services is paid based on an invoiced amount. For these services, the authorized number of units represent an authorized dollar amount, rather than a duration of respite services. In order to ensure an accurate and relevant comparison between authorized and utilized services, respite services with units of service denominated in dollars are excluded from the analysis. For this reason, the utilized hours and costs will not match the analyses described above. During FY 2014-15, only about 22% of the authorized hours and about 25% of the authorized dollars of waiver respite services were provided to clients. The data do not tell us if the gap between the authorized amounts and the provided amounts are due to a lack of need for the services by the client’s caregiver, due to an inability to find a provider able to provide the services, or some other reason. Table 6 provides an overview of the differences between the amount of waiver respite services authorized and the amount of waiver respite services used. 28
Table 6: Hours and Dollars of Waiver Respite Service Authorized and Provided Authorized
Hours of Waiver Respite Services Waiver Respite Services Dollars
Provided
Percent of Authorized
3,457,788
743,816
21.5%
$ 38,032,532
$ 9,437,191
24.8%
In order to further investigate the nature of the gap between authorized and provided waiver respite services, HMA looked at the average hours of waiver respite services authorized and the average hours of waiver respite services provided by Medicaid waiver. A review of the data found the greatest difference between authorized and provided hours of waiver respite services was in the “Brain Injury, Community Choice Transitions, and Spinal Cord Injury Waivers,” which were combined in order to comply with HIPAA requirements regarding protection of patient privacy. The difference in these waivers was a little over 3,600 hours per year on average. The next highest difference was found in the Elderly, Blind, and Disabled waiver, where the difference was 977 hours. HMA also reviewed differences between the average cost of waiver respite services authorized and the average cost of waiver respite services provided by Medicaid waiver. A review of the data showed that the greatest difference was again in the “Brain Injury, Community Choice Transitions, and Spinal Cord Injury Waivers,” with a difference of approximately $18,346. Like the data for the difference in hours of respite services, the second largest difference was found in the Elderly, Blind and Disabled Waiver, where the difference was about $10,229. The difference in the Children with a Life Limiting Illness waiver was found to be almost $10,471. This amount appears small relative to the difference in the number of hours. This difference can be accounted for in the type of services that were provided compared to the services authorized. The data suggests that in the Children's Extensive Supports waiver, respite services provided had a higher cost per hour than what appeared in the authorization file. This analysis is not meant to suggest that these services were provided inappropriately, nor that services were provided without authorization. Details for the differences in the hours and dollars authorized and the hours and dollars provided can be found in tables 7 and 8, respectively.
29
Table 7: Average Hours of Respite Services by Waiver Average Hours of Respite Services by Waiver
Hours Used Mean
Brain Injury Waiver
Hours Authorized
Median
Mean
Median
*
*
*
*
60
72
557
180
381
205
470
425
Community Choice Transitions
*
*
*
*
Community Mental Health Supports
*
*
*
*
362
312
1,339
720
Spinal Cord Injury Waiver
*
*
*
*
Supported Living Services
316
203
481
297
*Brain Injury, Community Choice Transitions, Community Mental Health Supports, and Spinal Cord Injury Waiver Combined for HIPAA Compliance
482
395
4,104
801
Children with a Life Limiting Illness Waiver Children's Extensive Supports
Elderly, Blind and Disabled Waiver
30
Table 8: Average Dollars of Respite Services by Waiver Dollars Used Average Dollars of Respite Services by Waiver Brain Injury Waiver
Mean
Dollars Authorized
Median
Mean
Median
*
*
*
*
Children with a Life Limiting Illness Waiver
$1,482
$1,058
$11,953
$2,885
Children's Extensive Supports
$5,377
$3,886
$7,879
$6,672
Community Choice Transitions
*
*
*
*
Community Mental Health Supports
*
*
*
*
$1,728
$1,518
$11,957
$3,795
Spinal Cord Injury Waiver
*
*
*
*
Supported Living Services
$4,915
$3,049
$6,811
$4,475
*Brain Injury, Community Choice Transitions, Community Mental Health Supports, and Spinal Cord Injury Waiver Combined for HIPAA Compliance
$2,630
$1,779
$20,976
$5,014
Elderly, Blind and Disabled Waiver
31
In order to further investigate the causes of the differences between the hours/dollars of waiver respite services authorized and the hours/dollars of waiver respite services provided, HMA looked at regional variations in the average differences in authorized and provided hours and costs of waiver respite services. RCCO region 1 showed the smallest average difference between the authorized and provided amounts in terms of dollars. RCCO region 3 showed the smallest average difference between the authorized and provided amounts in terms of hours or waiver respite services. The variation between RCCO regions is more pronounced when measured in terms of hours rather than dollars. When measured in hours, the largest difference (in RCCO region 4) is 2.44 times the smallest difference (in RCCO region 3). When measured in dollars, there is less variation between RCCO region in the average differences between the authorized and provided amounts. The largest difference (RCCO region 4) is just over 1.5 times the difference of the smallest value (in RCCO region 1). The smaller variation in the difference in dollars authorized versus the variation in hours authorized suggests that clients may be receiving fewer hours of waiver respite service, but receiving services with a higher reimbursement rate than what appears in the authorization file HMA received. Again, this is not meant to suggest that these services were provided inappropriately, nor that services were provided without authorization. This may suggest that the waiver respite services that are contained in the prior authorization data do not adequately reflect the ultimate needs of clients and their caregivers and that more skilled and expensive services are ultimately needed and provided. The details of the data can be found in Table 9. Table 9: Differences in Average Authorized and Provided Hours and Dollars Across RCCO Regions RCCO
Difference in Average Hours
Ratio (Hours)
Difference in Average Dollars
Ratio (Dollars)
1
1,024
1.21
$9,798
1.00
2
1,366
1.61
$12,924
1.32
3
849
1.00
$11,008
1.12
4
2,075
2.44
$15,170
1.55
5
1,478
1.74
$14,021
1.43
6
997
1.17
$10,237
1.04
7
1,146
1.35
$13,873
1.42
32
The differences between RCCO regions were mapped in order to determine if the data suggested that the differences are related to difficulties in obtaining waiver respite services, particularly in rural areas of the state. As noted previously, the smallest differences in terms of hours and dollars are found in RCCO regions 3 and 1, respectively. Region 1 comprises much of the western slope of the state, of which much is considered to be rural. Region 3 contains largely urban areas with some less urban or rural areas. Conversely, the largest difference in hours and dollars are found in RCCO region 4. Region 4 contains southeast Colorado, which is almost entirely rural. It is interesting to note that the second largest gap is in RCCO region 5, which includes Denver County. Even though both regions have the largest and second largest gaps in authorization and utilization, the fact that Region 4 has a significantly larger gap, particularly measured in hours, suggests that there may be issues around the availability of waiver respite service providers in southeastern rural Colorado. Based on the mapped data and the significant differences between the differences in hours and the differences in dollars across RCCO regions, the data may also suggest that provider shortages and difficulties accessing respite services are not limited to rural areas, but rather are faced by individuals seeking respite care in urban areas as well. Alternatively, the data may suggest that prior authorized waiver respite services may not be consistent with the evolving needs of clients and their caregivers. The analysis suggests that access challenges exist in rural areas but does not suggest that access obstacles are limited to rural areas. The geographic distribution of the differences in hours and dollars can be seen in Figures 1 and 2, respectively.
33
FIGURE 1: DIFFERENCES IN AVERAGE AUTHORIZED AND PROVIDED HOURS ACROSS RCCO REGIONS
34
FIGURE 2: DIFFERENCES IN AVERAGE AUTHORIZED AND PROVIDED DOLLARS ACROSS RCCO REGIONS
35
Changes in Waiver Respite Service Provision Between FY 2013-14 and FY 2014-15 Between state FY 2013-14 and FY 2014-15, the number of clients receiving waiver respite services remained relatively steady except in the Children’s Extensive Supports (CES) waiver and the Supported Living Services (SLS) waiver. The number of clients receiving waiver respite services in the CES waiver increased over 25% between FY 2013-14 and FY 2014-15. The number of clients receiving waiver respite services through the SLS waiver increased by about 34% between FY 2013-14 and FY 2014-15. The detailed figures can be found in Table 10.
36
Table 10: Clients Receiving Waiver Respite Services in FY 2013-14 and FY 2014-15 Clients Receiving Respite Waiver
FY 2014
FY 2015
*
*
61
57
556
770
Community Choice Transitions
*
*
Community Mental Health Supports
*
*
404
406
Spinal Cord Injury Waiver
*
*
Supported Living Services
843
1,130
24
35
Brain Injury Waiver Children with a Life Limiting Illness Waiver Children's Extensive Supports
Elderly, Blind and Disabled Waiver
*Brain Injury, Community Choice Transitions, and Spinal Cord Injury Waivers Combined for HIPAA Compliance
Based on reports provided by HCOF, between FY 2013-14 and FY 2014-15, the number of units of waiver respite services provided increased in the CES and SLS waivers. Conversely, the number of units of waiver respite services provided decreased during the same period for the Children with a Life Limiting Illness waiver, Elderly, Blind and Disabled waiver, and the Brain Injury, Community Choice Transitions, and Spinal Cord Injury Waivers Combined for HIPAA Compliance. Note that these are not hours of respite services as the data for this analysis did not allow for conversion into hours. Table 11 provides the detailed changes in service units provided between FY 2013-14 and FY 2014-15.
37
Table 11: Waiver Respite Service Utilization in FY 2013-14 and FY 2014-15 Total Units Brain Injury Waiver
FY 2014
% Change
FY 2015 *
*
*
5,106
4,296
-16%
728,329
1,130,361
55%
Community Choice Transitions
*
*
*
Community Mental Health Supports
*
*
*
18,690
15,141
-19%
Spinal Cord Injury Waiver
*
*
*
Supported Living Services
1,037,741
1,190,191
15%
8,510
3,934
-54%
Children with a Life Limiting Illness Waiver Children's Extensive Supports
Elderly, Blind and Disabled Waiver
*Brain Injury, Community Choice Transitions, and Spinal Cord Injury Waiver Combined for HIPAA Compliance
Between FY 2013-14 and FY 2014-15, the costs of waiver respite services provided increased in the CES and SLS waivers. Conversely, the costs of waiver respite services provided decreased during the same period for the Children with a Life Limiting Illness Waiver, Elderly, Blind and Disabled Waiver, and the Brain Injury, Community Choice Transitions, and Spinal Cord Injury Waivers Combined for HIPAA Compliance. Table 12 provides the detailed changes in service units provided between FY 2013-14 and FY 2014-15.
38
Table 12: Waiver Respite Service Costs in FY 2013-14 and FY 2014-15 Total Expenses Total Units Brain Injury Waiver
% Change FY 2014
FY 2015 *
*
*
$224,780
$84,451
-62%
$2,820,486
$4,237,516
50%
Community Choice Transitions
*
*
*
Community Mental Health Supports
*
*
*
$683,987
$693,459
1%
Children with a Life Limiting Illness Waiver Children's Extensive Supports
Elderly, Blind and Disabled Waiver Spinal Cord Injury Waiver
*
Supported Living Services
$4,229,914
$5,211,334
23%
$53,702
$38,226
-29%
Brain Injury, Community Choice Transitions, and Spinal Cord Injury Waiver Combined for HIPAA Compliance
* *
Respite Services Provided by BHOs In addition to the respite services provided by several HCBS waivers, respite services are also available as a mental health benefit through the state’s contracted behavioral health organizations (BHOs). The following data was provided by HCPF regarding the provision of respite services by BHOs during FY 2013-14 and FY 2014-15.
39
Table 13: Respite Service Provided Under the State Behavioral Health Contract in FY 2013-14 BHO Name
Days
Avg. Per Diem
Est. Cost
Behavioral Healthcare, Inc
822
$233.01
$191,534.22
1
Colorado Health Partnerships
369
$282.00
$104,058.00
5
47
$309.63
$14,552.61
2
119
$207.94
$24,744.86
4
Foothills Behavioral Health Partners Northeast Behavioral Health Partnership Totals
1357
Number of Respite Service Providers
$334,889.69
Table 14: Respite Service Provided Under the State Behavioral Health Contract in FY 2014-15 BHO Name
Days
Avg. Per Diem
Est. Cost
Number of Respite Service Providers
Behavioral Healthcare, Inc
498 $233.01
116,038.98
1
Colorado Health Partnerships
414 $282.00
116,748.00
5
35 $309.63
$10,837.05
1
Northeast Behavioral Health Partnership
125 $207.94
$25,992.50
2
ABC NE
139 $207.94
$8,903.66
1
Foothills Behavioral Health Partners
Totals
1211
268,520.19
40
Respite Services Provided by AAA in Colorado AAA Caregiver Profiles Respite services are also provided by the AAA agencies across the state. Based on data provided by the Colorado Department of Human Services, the age of the caregiver age is provided in Table 15 below. The majority of caregivers are 60 to 69 years of age. A disproportionately large number of caregivers are not located in rural areas relative to the State rural population. Approximately 23% of caregivers are in a rural area compared to the approximately 17.9% of Coloradans who live in rural areas. This suggests that the need for respite services for patient in rural areas is proportionately greater in rural areas. In combination with analysis of the large gap between authorized and utilized Medicaid waiver respite services in southeastern Colorado, a case begin to emerge suggesting that there may be a shortage of respite providers in some rural areas of the state. Table 15: Age of Caregiver for Recipients of AAA Respite Services in Rural and Urban Areas Respite Services in State Fiscal Year 2014-15 (Rural and Urban) Age of Caregiver Age Range of Caregiver Age Unknown
% Unknown
% Not Rural
% Rural
30%
57%
13%
20-29
8%
85%
8%
30-39
5%
81%
14%
40-49
0%
83%
17%
50-59
6%
68%
26%
60-69
4%
71%
26%
70-79
3%
76%
21%
80-89
1%
78%
21%
90-99
0%
62%
38%
99+
0%
0%
100%
Total Caregivers
4%
73%
23%
State Rural Amount
17.91%
41
AAA Respite Services The majority of respite services are provided to patients with a caregiver who is aged 60 to 69 years. In general, the service provision pattern corresponds to the distribution of caregivers across age. Table 16 displays the hours of respite service provided to patients with caregivers in specific age ranges. Table 16: Hours of Respite Services Provided to Recipients of AAA Respite Services in Rural and Urban Areas by Age of Caregiver Respite Services in State Fiscal Year 2014-15 (Rural and Urban) Hours of Respite Service Provided Age Range of Caregiver Age Unknown
% Unknown
% Not Rural
% Rural
Total
12%
70%
18%
5,281.50
20-29
8%
86%
6%
1,371.64
30-39
1%
91%
8%
1,410.00
40-49
0%
90%
10%
4,107.73
50-59
3%
69%
28% 13,501.67
60-69
4%
70%
26% 20,823.65
70-79
3%
70%
27% 12,861.39
80-89
0%
76%
24%
9,842.91
90-99
0%
53%
47%
859.75
99+
0%
0%
100%
6.50
Total Units
3%
72% State Rural Amount
24% 70,066.74 17.91%
Based on data provided by the CDHS, Tables 17 and 18 provide a breakout of the number of clients and the number of hours, respectively, of respite services provided by each AAA.
42
Table 17: Percent of Clients Receiving Respite Services in Each AAA in Rural and Urban Areas Respite Services in State Fiscal Year 2014-15 (Rural and Urban) Number of Clients Receiving Respite Services % Unknown Alpine Area Agency on Aging
% Not Rural
% Rural
0%
86%
14%
10%
62%
28%
Boulder County AAA
2%
90%
8%
Denver RCG - Aging Services Div.
9%
79%
11%
East Central Council of Governments
0%
0%
100%
Huerfano/Las Animas AAA
0%
30%
70%
Larimer County AAA
1%
91%
8%
League for Economic Assistance and Planning
0%
45%
55%
23%
23%
55%
NE Colorado Assoc. of Local Gov.
0%
18%
82%
Pikes Peak AAA
2%
76%
22%
Pueblo AAA
0%
63%
38%
San Juan Basin AAA
0%
18%
82%
South Central CO Seniors, Inc.
10%
48%
43%
Upper Arkansas AAA
12%
74%
14%
Weld County AAA
0%
81%
19%
Total
4%
73%
23%
Associated Governments of NW Colorado
Lower Arkansas Valley AAA
State Rural 17.91%
43
Table 18: Hours of Respite Services Provided by AAA in Urban and Rural Areas Respite Services in State Fiscal Year 2014-15 (Rural and Urban) Hours of Respite Services Provided % Unknown
% Not Rural
Alpine Area Agency on Aging
0%
97%
3%
1,075.00
Associated Governments of NW Colorado
5%
81%
14%
1,989.10
Boulder County AAA
1%
91%
8%
5,098.30
Denver RCG - Aging Services Div.
4%
80%
17%
24,199.25
East Central Council of Governments
0%
0%
100%
908.00
Huerfano/Las Animas AAA
0%
31%
69%
722.75
Larimer County AAA
1%
92%
7%
6,601.49
League for Economic Assistance and Planning
0%
48%
52%
940.00
Lower Arkansas Valley AAA
17%
51%
32%
3,377.25
NE Colorado Assoc. of Local Gov.
0%
12%
88%
822.25
Pikes Peak AAA
1%
67%
32%
8,217.75
Pueblo AAA
0%
59%
41%
2,563.00
San Juan Basin AAA
0%
33%
67%
1,118.14
South Central CO Seniors, Inc.
6%
50%
43%
4,648.00
13%
73%
14%
2,640.00
Weld County AAA
0%
77%
23%
5,146.46
Total
3%
72%
24%
70,066.74
State Rural Amount
17.91%
Upper Arkansas AAA
% Rural
Total
44
Trends in Aging in Colorado According to the Colorado State Demography Office, Colorado has begun to experience rapid increases in the population over age 65 with the movement of baby boom generation into older age groups. The number of persons over age 65 in 2040 will be nearly 3 times as many as today [2010], growing twice as fast as the total population. Based on data from the Colorado State Demography Office, HMA estimates that there are approximately 725,000 individuals age 65 or older in the state. Based on the estimates of the Colorado State Demography Office, there will be approximately 1.5 million people in Colorado age 65 or older. Based on data from the Colorado State Demography Office, in 1970, people age 65 and older made up approximately 9% of the population. Forty years later, in 2010, people age 65 and older make up 11% of the total population of the state. By 2040, thirty years later, people age 65 and older are projected to make up 19% of the state population. This projected increase in the population age 65 and older suggests that there will more people who require services from a caregiver, which in turn will drive an increase in the demand for respite services, roughly proportional to the increase in the population. Additionally, the increase in the number of people age 65 and over means that more caregivers will be age 65 and older. This will drive additional increases in the demand for respite services as older caregivers will need more respite services in order to attend to their own care needs. This suggests that the growth in the demand for respite services will be increase by more than the proportional increase in the population age 65 and older.
Colorado Needs, Gaps, Providers, and “Hotspots” Another way to examine needs for respite services in Colorado and identify potential gaps is through an analysis of “hotspots” including geographic areas in which indicators suggest there may be greater need (based on the number of people with a disability or who receive Medicaid waiver services) and analyses of where providers of respite services are located. Because of the lack of data about needs for respite from caregivers, using proxy data such as this can help point to unmet needs. The following maps and tables are drawn from several data sources, including:
Data regarding individuals with a disability are from the US Census American Fact Finder website http://factfinder.census.gov/faces/nav/jsf/pages/index.xhtml Medicaid respite service claims and prior authorization data for all Medicaid waivers were provided by the Colorado Department of Health Care Policy and Financing 45
Data on providers of respite services (within waivers) were provided by the Colorado Department of Health Care Policy and Financing
FIGURE 3: HOT SPOT ANALYSIS FOR ESTIMATED NUMBER WITH A DISABILITY AND INCOME BELOW POVERTY LEVEL
Figure 3 shows Colorado counties shaded to represent the results of a hot spot analysis. The analysis is based on the number of individuals with a disability and income in the past 12 months below poverty level. Given a set of data points, the Getis-Ord Gi* statistic identifies those clusters of points with values higher or lower in magnitude than you might expect to find by random chance. Hot spot analysis methodology is based on features (counties), neighborhoods (a group 46
of neighboring counties based on a fixed distance including the feature), and study area (Colorado). When a neighborhood is determined to be significantly different from the study area, the feature is marked as a hot or cold spot. A statistically significant cluster of high numbers of individuals with a disability below poverty level is most likely to occur (99% confidence) in the following counties: Adams, Arapahoe, Boulder, Denver, Douglas, Jefferson, Lincoln, Morgan and Washington. Alternatively, a statistically significant cluster of low numbers is most likely to occur (95% confidence) in the following counties: Gunnison and Mineral. The pattern is driven by population size. FIGURE 4: HOT SPOT ANALYSIS FOR ESTIMATED PERCENT WITH A DISABILITY AND INCOME BELOW POVERTY LEVEL AMONG THE TOTAL POPULATION
47
SHOWS COLORADO COUNTIES SHADED TO REPRESENT THE RESULTS OF A HOT SPOT ANALYSIS. THE ANALYSIS IS BASED ON THE PERCENT OF INDIVIDUALS WITH A DISABILITY AND INCOME IN THE PAST 12 MONTHS BELOW POVERTY LEVEL (NUMBER FROM
Figure 3 divided by county population). A statistically significant cluster of high percentage individuals with a disability below poverty level is most likely to occur (99% confidence) in the following counties: Baca, Bent, Costilla, Huerfano, Crowley, Kiowa, Las Animas, Otero, and Prowers. Alternatively, a statistically significant cluster of low percentages is most likely to occur (99% confidence) in the following counties: Boulder, Broomfield, Clear Creek, Denver, Eagle, Garfield, Gilpin, Grand, Jackson, Jefferson, Lake, Larimer, Pitkin, Routt, Summit, and Weld. The pattern in is driven by the prevalence of individuals with a disability among the population.
48
FIGURE 5: HOT SPOT ANALYSIS FOR ESTIMATED PERCENT WITH A DISABILITY AND INCOME BELOW POVERTY LEVEL AMONG THE TOTAL POPULATION
FIGURE 5 SHOWS THAT A MAJORITY OF RESPITE CARE PROVIDERS ARE LOCATED IN A STATISTICALLY SIGNIFICANT CLUSTER OF COUNTIES WITH CLUSTER OF COUNTIES WITH LOW PERCENTAGES BUT HIGH NUMBERS (
Figure 3) of individuals with a disability below the poverty level. The list of respite care providers was developed using provider lists from the Alzheimer’s Association, Colorado Respite Care Coalition, and Medicaid Provider IDs from claims data. Duplicate organizations found in more than one of the lists were removed in order to create one comprehensive list of providers by address.
49
FIGURE 6: NUMBER OF MEDICAID CLIENTS WHO RECEIVED WAIVER RESPITE SERVICES DURING FY14-15 BY RCCO
50
FIGURE 7: MEDIAN AGE OF CLIENTS RECEIVING MEDICAID WAIVER SERVICES
Figure 7 shows the median age of clients receiving Medicaid respite services by RCCO region. RCCO Region 4 has the highest median age, ten years higher than the next highest RCCO regions.
51
Research on Awareness and Marketing Planning a targeted marketing campaign, bringing it to a scale that is impactful, and maintaining it over time requires significant leadership, consistent funding, and staff resources. Many agencies lack some or all of these elements and, as a result, there is a limited amount of existing material to point to as a model for reaching caregivers and effectively connecting them to resources and information. The landscape of material and efforts to date does, however, provide a good starting point for Colorado to custom plan its own effort with these materials and resources as reference, but none represents a comprehensive model that would be appropriate for the objectives of the Task Force. The most notable material for informing planning has been bolded and underlined in the narrative and/or included as attachments. A significant majority of the existing marketing and outreach effort is directly connected to The Lifespan Respite Care Program. The Lifespan Respite Care Program was authorized by Congress in 2006 under Title XXIX of the Public Health Service Act (42 U.S.C 201). As the Task Force members likely know, Lifespan Respite Care programs are coordinated systems of accessible, community-based respite care services for family caregivers of children and adults of all ages with special needs. Such programs reduce duplication of effort and assist in the development of respite care infrastructures at the state and local levels. One of a broad range of activities that can be funded under this program is marketing and outreach campaigns to better educate family caregivers about respite and how to access services.53 HMA Community Strategies’ scan of the existing and past efforts reveal that marketing and awareness efforts for respite care services generally fall into a three categories. There are several dozen state efforts underway almost all of which are Lifespan Respite Care Programs, a few national efforts, and a few independent agency efforts. Elements There is a range of elements employed to market and promote awareness of respite care services. These include: flyers, advertisements, brochures, posters, postcards, web pages, social media, op-eds, and videos, which are usually cross-posted between YouTube, Vimeo or other video sharing sites and an agency’s or respite provider’s own site. In addition to the statewide efforts through Lifespan Respite Care programs described below, the National Respite Network and Resource Center has led some discussion of creating a national unified messaging strategy for building awareness and marketing services. The work is not complete and remains under discussion by the National Respite Network and Resource Center, in particular by a committee on marketing and awareness. 53
US Department of Health and Human Services, Administration for Community Living, Center for Integrated Programs, web page: http://www.acl.gov/Programs/CIP/OCASD/LifespanRespite/index.aspx
52
Marketing by Colorado Marketing of respite services in Colorado appears to be limited, but efforts include a brochure by the Colorado Respite Coalition and relatively inactive social media. Agencies likely conduct additional grassroots efforts such as email blasts to their lists, flyer hanging and physical outreach at community spaces and events. These activities are not detectable in public information but would be foundational in terms of marketing efforts. The Colorado Respite Coalition has an online strategy plan and a 2015/2016 comprehensive marketing plan. The strategies and activities detailed in these plans lay plans for greatly amplifying the resources available in persuasive ways to reach caregivers who are potential recipients of respite services. The staff currently lacks the capacity to carry out the extensive work to drive these plans forward. There is currently established inter-linking of the statewide entity and regional coalitions on social media platforms that presents an opportunity in Colorado. Material that would serve as “hooks” for a caregiver populates many of these pages, such as articles about how to cope and other relevant media. More robust activity and targeted member growth efforts would likely leverage these media as powerful awareness tools and interspersed resource information between articles and other event information would present opportunities to connect potential clients with services. Marketing by Other States While 32 states and the District of Columbia have all received Lifespan Respite Care grants, marketing is only one of a larger range of activities that can be funded with those funds and has not been prioritized in a majority of states. Alabama, Arizona, Connecticut, Washington D.C., Illinois, Louisiana, Massachusetts, Montana, New Hampshire, North Carolina, South Carolina, Tennessee and Texas all have initiatives with explicit marketing objectives. The reach of most appears to be somewhat limited as evidenced by the low visibility of materials online through various searching methods including web site review, google searching and social media scans. North Carolina has made strategic resources, noted below, available to its member organizations that are strong and noteworthy. The reach and impact of the North Carolina member organizations utilizing these resources has not been measured. The rationale of the statewide Lifespan entity driving organizing and driving marketing and communications, with a strategy of mobilizing its provider partner organizations is a tiered strategy that would be transferable to Colorado. The regional organizations and broad geography underscore the opportunity and need to mobilize provider partners in their communities. Louisiana Lifespan Respite Coalition is noteworthy in that it launched multiple elements for broader reach and multiple impressions. The campaign produced a flyer, FAQs, a Mother’s Day 53
op-ed, a one minute PSA, an awareness banner for Family Caregiver Month and structured it around results of a consumer survey they fielded. While some of the material is dense and not streamlined in its effort to reach a potential client and link them to services, the way in which they incorporated multi-pronged efforts is important and can be used as a model. Sample materials are provided as attachments to this analysis. National Marketing Nationally, the standout resource is ARCH National Respite Network in its online cataloguing of resources and samples being used in state coalitions. ARCH is also the home of an ad hoc messaging group that is leading the national dialogue on unified messaging discussed above. ARCH is not a producer of comprehensive marketing campaigns but is noted for its value as a resource. American Association of Retired People (AARP) has a uniquely comprehensive resource site on its web page that is cross-promoted with small box ads. Contents include articles, a local resource/provider locator, health information and multiple diverse profiles. It has collaborated with the Ad Council to build awareness and drive traffic to its site. The site can be viewed at AARP.org/caregiving. Other activity reviewed but less notable is the way in which the WEGO Health Blog has featured some limited awareness material targeted to their special audience of health activists. It is less notable due to the very limited reach, but worth mentioning because communications strategies to reach the hard to reach should include efforts to place information/impressions in as many different places, across as many different platforms as possible. Independent and Local Efforts for Marketing The Amherst H. Wilder Foundation in Minnesota has a comprehensive respite marketing campaign hosted at www.whatisacaregiver.org. The advertisements connect the experiences of caregivers to the identity of being a caregiver in a relatable way and feature diverse images. The linking of all ads back to the comprehensive web resource is actionable and the material is well organized and easy to navigate, all centering around information that develops an understanding of a caregiver identity and awareness of support services. Social media is well integrated as another point of entry and an opportunity to virally leverage the reach of the material. This example is similar to the AARP model. In addition to the national collaboration with AARP noted above, many Ad Councils locally have partnered with provider organizations to produce and publish advertising material. These can be powerful partnerships in that media design and placement are expensive. An example of this kind of collaboration is Lifespan Rochester partnering with the Rochester Ad Council and Antithesis Advertising to develop media that builds awareness and promotes respite care services. Dozens of examples like this one exist. 54
Other Notable Resources and References While they are not available in any one place, HMACS identified the following as valuable resources that already exist for developing a statewide respite care marketing campaign.
North Carolina “BEHAVE Framework” adapted from the Academy for Education Development Marketing to Caregivers: Moving Beyond Awareness, Alicia Blater, Lifespan Respite Project Director, NC Division of Aging and Adult Services Respite Messaging & Public Awareness slide deck, 2014 National Lifespan Respite Conference, Nashville, TN, ARCH Ad Hoc Messaging Workgroup Louisiana Lifespan Respite Coalition, 2013 Communications Questionnaire Results Asking for Help Is a Sign of Strength, A Public Awareness Guidebook for Crisis Nurseries and Respite Care Programs; Broughton, Belinda, Ed, 1993
Budget Samples In order to consider the range of options for investing in more robust marketing, HMA Community Strategies has built three sample budgets for comparison. All of these elements have a range and all of them are based on estimates of the scale that would be required within Colorado and reasonable amounts to be prepared for covering the costs. Further budget development can be carried out by deciding on the menu of elements, budget range and intended scale. At that juncture, it would be practical to begin pricing elements exactly.
55
Marketing Resource required
Start-up expense?
Staff Coordinator, ($41k)54
Baseline
Moderate
$47,150
Cadillac
$47,150
Staff Marketing Manager, ($58k)55
$66,700
Staff Marketing Director, ($80k)56
$92,000
Design contractor, collateral materials (@$50/hr)* Design firm, campaign materials
$3,000
Yes
Web design
Yes
$1,500
$3,000
$15,000
$25-40,000
$6,000
$15,000
$30-50,000
Current hourly contractor
Limited firm redesign
Moderate firm redesign
Web maintenance and updating (@$75/hr)*
$4,500
$9,000
$9,000
Conference exhibiting
$3,000
$6,000
$10,000
Travel – conferences
$1,550
$3,875
$6,200
Travel – outreach activities
$7,400
$14,800
$22,200
Targeted web advertising
$4,000
$5,500
$8,500
Print
$1,725
$6,000
$10,000
0
$11,298
$22,596
0
$5,000
$10,000
$78,325
$159,673
$295,646 330,646
Radio TV (produce ads, PSA placement) TOTAL:
Yes
*based on current contractors working for the Colorado Respite Coalition
54
Payscale.com Ibid 56 ibid 55
56
Budget notes: An investment in staff might be the most urgent expense for the Task Force to consider. Coordination and outreach driven by staff would leverage the existing resources and framework already created which currently has a reach that could be greatly built upon and expanded. When using this information to establish recommendations, the Task Force may want to consider an interactive process. While any of these three options could be used “off the shelf,” some review and customization with an understanding of what is reflected would probably be useful. These budgets could all be expanded significantly to plan for more robust, and somewhat costly, media placements. HMA Community Strategies remained conservative in preparing the budget numbers for print, radio and television, as these costs quickly drive a budget up significantly. For example, the print numbers for the baseline budget covers only three half page ads per year in “Colorado Medicine”, the magazine of the Colorado Medical Association. The moderate and “Cadillac” budgets include a higher frequency and scaled placements in regional general print newspapers. These budgets could be easily doubled, tripled or quadrupled to really elevate visibility, if the Task Force is inclined to make more significant requests. The radio budget for the moderate budget include 2 limited rotations per year in each of the three radio markets (Denver, Grand Junction and Colorado Springs). The “Cadillac” budget includes double that volume. Marketing to Providers Doctors, nurses and other health care providers are extensively targeted with marketing messages making them difficult to reach and persuade. They represent an audience whose attention is difficult to get. Strategies for reaching and influencing this audience rely on more labor intensive outreach to achieve multiple impressions. Ideas can be taken from medical device or pharmaceutical sales marketing efforts to get information placed where these people travel. Association events, statewide conferences, events of provider organizations all vary by organization and custom opportunities modeled on the list of ideas below can be developed specific to Colorado’s regions by dedicated outreach staff. (Note: the budgets include real information on exhibiting at some of these Colorado conferences or placing print advertising in their publications) Opportunities for Reaching Providers: • Arrange exhibit hall tables at medical conferences • Develop key referral hot spots (trauma centers, convalescent facilities, specialist centers, senior centers) • Target CME conferences for placement opportunities • SEO + targeted web advertising using strategies in the existing Colorado Respite Coalition Online Strategy Plan • Host occasional information tables at or near provider sites • Placements at medical community charitable events 57
• •
Case manager outreach with referral materials and repeat contacts Medical print media ad placements
Strategy Notes and Recommendations The following recommendations are taken from a review of the material described in this analysis:
Campaigns should use multiple, diverse images within one design and/or across a campaign so as to not limit the relatability and appeal for potential clients. Task Force members noted in interim discussions that images should vary from urban to rural, as one diversity factor to prioritize. The Colorado Respite Coalition’s existing 2015/2016 communications plan could be updated to detail intent to reflect diverse images and content. Seek input from provider partners in all regions of the state informally or consider forming a marketing committee. This will help update efforts to address varied challenges and reflect the diversity of a large state. Reaching “people on the edge” or on the verge of crisis can be prioritized through various sub-strategies, including: using images of crisis and images of stressed people receiving support; making every impression actionable; tailoring SEO and targeted web advertising using key words specific to caregivers in crisis; and by prioritizing outreach/referral relationships (trauma centers, emergency departments, crisis services, case managers). Historically there has been a focus on increasing caregiver self-identification and this should continue. Efforts should be committed to and reach as broadly as possible through as many platforms as possible in a sustained way. Reach and multiple impressions are key to persuasion in marketing and there is “no wrong door”, and reaching hard to reach people. Social media with its powerful reach is the now and the future of marketing and reaching people in their environment. A robust social media effort should be at the center of any marketing campaign. Make every impression actionable. If someone is inspired by the marketing to seek more information or services, there should be a clear, easy way for them to follow-through. The resource sites of AARP and The Amherst H. Wilder Foundation noted above are excellent models. Invest in design that is attractive and well organized. “Old school” organizing using email blast, flyer hanging and physical outreach at community spaces and events should remain key elements to marketing, especially for reaching the older adult population. This is an important element to maintain even while prioritizing digital outreach, as many older adults who may be amongst those most in need may be less tech-friendly.
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Research on Disability Competence Definitions
In our examination of definitions of disability-competent care, The Centers for Medicare and Medicaid Services57 (CMS), The Disability Practice Institute (DPI)58, and Resources for Integrated Care59 all shared the same definition: o Disability competent care is “participant-centered, provided by an interdisciplinary team (IDT), and focused on achieving and supporting maximum function. It is intended to maintain health, wellness, and life in the community as the participant chooses. Disability-competent care recognizes and treats each individual as a whole person, not a diagnosis or condition.”
State Competencies for Providers
A number of states are either requiring or recommending competencies/guiding principles for workers in their states to provide disability-competent care. o For example, The State of New York Office of Mental Health’s “Respite Worker Competencies”60 includes nine areas where respite workers should have knowledge, four of which relate to disability-competent care including: “Behaviors associated with serious emotional disturbances in children and adolescents; Effective responses to undesirable behaviors; Conflict management techniques with children; Caring for children with traumatic histories.” The State of Connecticut Department of Children and Families61 respite care guiding principles include a number disability-competent specific statements.“ Children with an emotional disturbance should have access to a comprehensive array of services that address the child’s physical, emotional, developmental, social and educational needs.” “Children with an emotional disturbance should receive individualized services in accordance with the unique needs and potential of each child, and guided by an individualized service plan.”
57
The Disability-Competent Care Self-Assessment Tool, The Centers for Medicare and Medicaid Services https://www.cms.gov/Medicare-Medicaid-Coordination/Medicare-and-Medicaid-Coordination/Medicare-MedicaidCoordination-Office/Downloads/DCCAssessmentTool.pdf 58 Disability-competent care, Disability Practice Institute, http://www.disabilitypracticeinstitute.com/services/ 59 Disability-competent care, Resources for Integrated Care, https://www.resourcesforintegratedcare.com/concepts/disability-competent-care 60 Home and Community Based Services Waiver Guidance Document Respite Worker Competencies, New York State’s Office of Mental Health, https://www.omh.ny.gov/omhweb/guidance/hcbs/competencies/respite.html 61 The State of Connecticut Department of Children and Families, http://www.ct.gov/dcf/cwp/view.asp?a=2558&Q=314372
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“Children with an emotional disturbance should receive services within the least restrictive, most normative environment that is clinically appropriate.” “The families and surrogate families of children with an emotional disturbance should be full participants in all aspects of the planning and delivery of services.” “Children with an emotional disturbance should receive services that are integrated, with linkages between child-caring agencies and programs and mechanisms for planning, developing and coordinating services.” “Children with an emotional disturbance should be provided with service coordination/case management or similar mechanisms to ensure that multiple services are delivered in a coordinated and therapeutic manner, and that they can move through the system of care in accordance with their changing needs.”
National Respite Care Providers Core Standards
Two national organizations, National Direct Service Workforce (DSW) Resource Center and ARCH National Respite Network and Resource Center, also have competencies/guiding principles for disability-competent care. o The Road Map of Core Competencies for the Direct Service Workforce62 includes a section for Participant Crisis Prevention and Intervention (which most closely aligns with disability-competency care). “The Direct Service Worker (DSW) recognizes the indicators of risks and participant crisis situations, and identifies appropriate person-centered prevention strategies.” “The DSW uses positive behavior support strategies to promote wellness, recovery and crisis prevention when a participant engages in potentially challenging or dangerous behavior.” “The DSW uses appropriate intervention strategies to defuse a crisis situation.” “The DSW recognizes the need for and seeks additional assistance at any point of a crisis.” “The DSW continues to monitor situations and effectively communicates with the participant and/or family or team members to reduce risk while complying with regulations for reporting.” “The DSW recognizes his or her role during conflict or crisis situations, identifies how his or her behavior affected the situation, and changes behavior to minimize potential for crisis or conflict” o The ARCH National Respite Network and Resource Center National Respite Guidelines, Guiding Principles for Respite Models and Services63 contains language related to
62
Road Map of Core Competencies for the Direct Service Workforce, National Direct Service Workforce (DSW) Resource Center, http://www.medicaid.gov/medicaid-chip-program-information/by-topics/long-term-services-andsupports/workforce/downloads/dsw-core-competency.pdf
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disability-competency care in respite care. According to the guidelines, respite care providers should receive training in: Disability awareness Behavior management; what behaviors to expect from individuals with specific disabilities such as autism, and managing individuals with difficult behaviors, including dementia, and of those whose family is experiencing a crisis. The Disability-Competent Care Self-Assessment Tool
An important resource for organizations to more closely examine their care models for people with disabilities is The Centers for Medicare and Medicaid Services Disability-Competent Care Self-Assessment Tool.64 The tool is specifically for health plans and health systems to “evaluate their current ability to meet the needs of adults with functional limitations and to identify strategic opportunities for improvement.”
The Disability Care Practice (DCP) Model
The Disability Practice Institute has developed The Disability Care Practice (DCP) Model65 which “promotes integration of disability-competent care and services across all settings (hospitals, medical offices, residential), types of care and support (MDs, nurses, therapists, behavioral health), and community-based services, including informal (family) and formal (paid) caregivers, all with the goal of enabling individuals to function with maximum independence and self-sufficiency in their homes and communities as they choose.” This model emphasizes care coordination across interdisciplinary primary care/care coordination teams to better serve and improve the quality of care for people with disabilities.
63
The ARCH National Respite Network and Resource Center National Respite Guidelines, Guiding Principles for Respite Models and Services, http://www.dhs.state.mn.us/main/groups/aging/documents/pub/dhs16_166193.pdf 64 The Disability-Competent Care Self-Assessment Tool, The Centers for Medicare and Medicaid Services https://www.cms.gov/Medicare-Medicaid-Coordination/Medicare-and-Medicaid-Coordination/Medicare-MedicaidCoordination-Office/Downloads/DCCAssessmentTool.pdf 65 The Disability Care Practice (DCP) Model,The Disability Practice Institute, http://www.disabilitypracticeinstitute.com/events/what-is-the-dcp-model/
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Disability-Competent Managed Care Research
Based on research conducted by Mathematica Policy Research66 with funding from the U.S. Department of Health and Human Services (HHS), Office of Disability, Aging and Long-Term Care Policy (DALTCP), there are four characteristics of health plans they studied that demonstrate high-levels of disability-competent care including: o High-touch clinical interventions o Interdisciplinary teams to deliver care o A strong emphasis on managing care transitions o Investment in behavioral health resources o This research concluded that “policymakers could play a critical role in the sustainability of these programs, because the state-specific policy environment and reimbursement structure in which plans operate greatly affects their ability to deliver interventions and their financial viability. Although the plans must continue to explore cost-effective ways to deliver their interventions, in order to generate net savings, policymakers should consider removing the legal and regulatory limitations that increase administrative burden and reduce the effectiveness of plans.”
Disability Competent Care Definitions
In our examination of definitions of disability-competent care, there tended to be universal agreement on the key concepts of this term. Based on our research, the following definitions of disability-competent care was shared across three organizations: o According to The Centers for Medicare and Medicaid Services67 (CMS) disability competent care is “participant-centered, provided by an interdisciplinary team (IDT), and focused on achieving and supporting maximum function. It is intended to maintain health, wellness, and life in the community as the participant chooses. Disability-competent care recognizes and treats each individual as a whole person, not a diagnosis or condition.” o The Disability Practice Institute (DPI)68 definition of disability competent care is “participant-centered, provided by an interdisciplinary team (IDT), and focused on achieving and supporting maximum function. It is intended to maintain health, wellness, and life in the community as the participant chooses. Disability-competent
66
Descriptive Study of Three Disability Competent Managed Care Plans for Medicaid Enrollees, Mathematica Policy Research, Jan 2014. http://www.mathematica-mpr.com/our-publications-and-findings/publications/descriptivestudy-of-three-disability-competent-managed-care-plans-for-medicaid-enrollees 67
The Disability-Competent Care Self-Assessment Tool, The Centers for Medicare and Medicaid Services https://www.cms.gov/Medicare-Medicaid-Coordination/Medicare-and-Medicaid-Coordination/Medicare-MedicaidCoordination-Office/Downloads/DCCAssessmentTool.pdf 68 Disability-competent care, Disability Practice Institute, http://www.disabilitypracticeinstitute.com/services/
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care recognizes and treats each individual as a whole person, not as a diagnosis or condition. The model, therefore, is structured to respond to the participant’s physical and clinical needs while considering his or her emotional, social, intellectual and spiritual needs.” o Resources for Integrated Care69 states that “Disability-competent care is participantcentered, provided by an interdisciplinary team (IDT), and focused on achieving and supporting maximum function. Disability-competent care recognizes and treats each individual as a whole person, not a diagnosis or condition, and is structured to respond to the participant’s physical and clinical needs while considering his or her emotional, social, intellectual and spiritual needs.” The Disability-Competent Care Self-Assessment Tool
The Disability-Competent Care Self-Assessment Tool70 was published by The Centers for Medicare and Medicaid Services. According to CMS, the purpose of the tool “was developed to help health plans and health systems evaluate their current ability to meet the needs of adults with functional limitations and to identify strategic opportunities for improvement.” The tool focuses on a three major domains with a number of subdomains in the tool including: o Relational-based Care Management – The CMS tool defines this as “participantcentered care is based on the recognition that the participant is not merely a passive recipient of medical care, but rather the primary source for defining care goals and needs. This type of care requires cultivating a relationship with the participant, seeing him or her as a whole person with hopes and preferences, and recognizing that the participant is oftentimes the best steward of resources. Inherent in participantcentered planning of care goals and needs is also the concept of the dignity of risk, which honors and respects the participant’s choices even if they are inconsistent with the recommendation of the IDT.” o Highly Responsive Primary Care – This is described as “a highly responsive primary care network is critical for timely, ongoing, and accessible care. The provision of primary care is a vital component of disability-competent care, which involves timely access to care in a variety of settings (in a clinical office, community, or participant’s home) as well as the capacity to assess and address newly emerging symptoms of concern, and the allocation of care and services.” o Comprehensive Long-Term Services and Supports – This focuses on “the range of home- and community-based services and supports that enable a participant to reside
69
Disability-competent care, Resources for Integrated Care, https://www.resourcesforintegratedcare.com/concepts/disability-competent-care 70 The Disability-Competent Care Self-Assessment Tool, The Centers for Medicare and Medicaid Services https://www.cms.gov/Medicare-Medicaid-Coordination/Medicare-and-Medicaid-Coordination/Medicare-MedicaidCoordination-Office/Downloads/DCCAssessmentTool.pdf
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in his or her home and participate in the community. Comprehensive LTSS often involves the identification of functional needs and the prioritization and allocation of resources. This commonly requires investing in resources and equipment to support the health and well-being of the participant, which, in turn, may prevent avoidable episodes of illness or progression of illness.” State Competencies for Providers
The State of New York Office of Mental Health’s “Respite Worker Competencies”71 includes nine areas where respite worker should have knowledge. Four relate to disability-competent care including: o “Behaviors associated with serious emotional disturbances in children and adolescents” o “Effective responses to undesirable behaviors” o “Conflict management techniques with children” o “Caring for children with traumatic histories.” The State of Connecticut Department of Children and Families72 respite care guiding principles include a number disability-competent specific statements including: o “Children with an emotional disturbance should have access to a comprehensive array of services that address the child’s physical, emotional, developmental, social and educational needs.” o “Children with an emotional disturbance should receive individualized services in accordance with the unique needs and potential of each child, and guided by an individualized service plan.” o “Children with an emotional disturbance should receive services within the least restrictive, most normative environment that is clinically appropriate.” o “The families and surrogate families of children with an emotional disturbance should be full participants in all aspects of the planning and delivery of services.” o “Children with an emotional disturbance should receive services that are integrated, with linkages between child-caring agencies and programs and mechanisms for planning, developing and coordinating services.” o “Children with an emotional disturbance should be provided with service coordination/case management or similar mechanisms to ensure that multiple services are delivered in a coordinated and therapeutic manner, and that they can move through the system of care in accordance with their changing needs.” o “Children with an emotional disturbance should be ensured smooth transitions to the adult service system as they reach maturity.”
71
Home and Community Based Services Waiver Guidance Document Respite Worker Competencies, New York State’s Office of Mental Health, https://www.omh.ny.gov/omhweb/guidance/hcbs/competencies/respite.html 72 The State of Connecticut Department of Children and Families, http://www.ct.gov/dcf/cwp/view.asp?a=2558&Q=314372
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o “The rights of children with an emotional disturbance should be protected and effective advocacy efforts for emotionally disturbed children and youth should be promoted.” o “Children with an emotional disturbance should receive services without regard to race, religion, national origin, sex, physical disability or other characteristics.” National Respite Care Providers Core Standards
The Road Map of Core Competencies for the Direct Service Workforce73 includes a section for Participant Crisis Prevention and Intervention (which most closely aligns with disabilitycompetency care). According to this competency, direct services providers should have skills in the following areas: o “The Direct Service Worker (DSW) recognizes the indicators of risks and participant crisis situations, and identifies appropriate person-centered prevention strategies.” o “The DSW uses positive behavior support strategies to promote wellness, recovery and crisis prevention when a participant engages in potentially challenging or dangerous behavior.” o “The DSW uses appropriate intervention strategies to defuse a crisis situation.” o “The DSW recognizes the need for and seeks additional assistance at any point of a crisis.” o “The DSW continues to monitor situations and effectively communicates with the participant and/or family or team members to reduce risk while complying with regulations for reporting.” o “The DSW recognizes his or her role during conflict or crisis situations, identifies how his or her behavior affected the situation, and changes behavior to minimize potential for crisis or conflict” The ARCH National Respite Network and Resource Center National Respite Guidelines, Guiding Principles for Respite Models and Services74 contains language related to disabilitycompetency care in respite care. o Specifically, the guiding principles state that respite care providers should receive training in “disability awareness”. o Respite providers should also receive training in “behavior management; what behaviors to expect from individuals with specific disabilities such as autism, and managing individuals with difficult behaviors, including dementia, and of those whose family is experiencing a crisis.”
73
Road Map of Core Competencies for the Direct Service Workforce, National Direct Service Workforce (DSW) Resource Center, http://www.medicaid.gov/medicaid-chip-program-information/by-topics/long-term-services-andsupports/workforce/downloads/dsw-core-competency.pdf 74 The ARCH National Respite Network and Resource Center National Respite Guidelines, Guiding Principles for Respite Models and Services, http://www.dhs.state.mn.us/main/groups/aging/documents/pub/dhs16_166193.pdf
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Association of Maternal & Child Health Programs (AMCHP) Standards for Systems of Care for Children and Youth with Special Health Care Needs75 does not include any specific language for disability-competent care and speaks more to culturally competent care.
The Disability Care Practice (DCP) Model
The Disability Practice Institute has developed The Disability Care Practice (DCP) Model76 which “promotes integration of disability-competent care and services across all settings (hospitals, medical offices, residential), types of care and support (MDs, nurses, therapists, behavioral health), and community-based services, including informal (family) and formal (paid) caregivers, all with the goal of enabling individuals to function with maximum independence and self-sufficiency in their homes and communities as they choose.” Another key to this model is care coordination across interdisciplinary primary care/care coordination teams. The DCP model has four key tenets that are essential and fundamental including: o “A service system that blends social supports and medical services, with the recognition that daily living needs are social; medical services are needed when illness or medical conditions threaten someone’s health.” o “A member-centered care and support team (involving family, clinicians, and caregivers identified by the member), based on the premise that each individual has unique needs and preferences, and should receive support they consider valuable to the extent possible.” o “A designated, responsive care coordinator with experience in working with persons with disabilities, who understands the need for rapid response in all matters, including any issues arising that could interfere with a person’s health, independence, or comfort.” o “Coordination of decision-making across all settings of care and support.”
Disability-Competent Managed Care Research
Research conducted by Mathematica Policy Research77 with funding from the U.S. Department of Health and Human Services (HHS), Office of Disability, Aging and Long-Term Care Policy (DALTCP) examined three disability competent health systems. The purpose of
75
Association of Maternal & Child Health Programs (AMCHP) Standards for Systems of Care for Children and Youth with Special Health Care Needs, http://www.amchp.org/AboutTitleV/Resources/Documents/Standards%20Charts%20FINAL.pdf 76 The Disability Care Practice (DCP) Model,The Disability Practice Institute, http://www.disabilitypracticeinstitute.com/events/what-is-the-dcp-model/ 77 Descriptive Study of Three Disability Competent Managed Care Plans for Medicaid Enrollees, Mathematica Policy Research, Jan 2014. http://www.mathematica-mpr.com/our-publications-and-findings/publications/descriptivestudy-of-three-disability-competent-managed-care-plans-for-medicaid-enrollees
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this descriptive study was to “describe the organizational features of these plans and the ways in which staff deliver services and coordinate care for people with disabilities.” Based on the interviews and study of the four plans, the key characteristics that of disability competency plans included: o High-touch clinical interventions – this is defined as “facilitating in-person contact because it is critical to: (1) establishing effective relationships with members; and (2) reducing hospitalizations and emergency department use.” o Interdisciplinary teams to deliver care – plans implemented this by “emphasizing the use of interdisciplinary teams to ensure holistic treatment.” o A strong emphasis on managing care transitions – This was coordinated through a “proactive approach to managing transitions by designating personnel to facilitate this process. In this role, the staff coordinating transitions follow members across various settings to ensure that providers have a shared understanding of the member's condition and functioning.” o Investment in behavioral health resources – Due to the behavioral health needs and “prevalence of behavioral health problems among their members and noted the challenges of tackling the comorbidities of medical and mental health conditions…plans noted the importance of having adequate in-house capacity in this area and/or experts available for consultation.” Important quote: “Policymakers could play a critical role in the sustainability of these programs, because the state-specific policy environment and reimbursement structure in which plans operate greatly affects their ability to deliver interventions and their financial viability. Although the plans must continue to explore cost-effective ways to deliver their interventions, in order to generate net savings, policymakers should consider removing the legal and regulatory limitations that increase administrative burden and reduce the effectiveness of plans.”
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Research on Cultural Competence Summary Cultural competency is an emerging and increasingly important concept in respite care due to changes in demographics in the U.S. Current efforts and strategies are expanding beyond individual training and increasingly focusing on systems and core competencies/standards for providers. These approaches are consistent with efforts in health and health care, mainly The National Standards for Culturally and Linguistically Appropriate Services in Health and Health Care. Demographics of Caregivers
It is estimated that 16.9% of caregivers are White (Non-Hispanic), 20.3% are African American, 19.7% are Asian American, and 21% are Hispanic. Those participating in the survey who reported being LGBT, 7% were White, 11% were African American, 15% were Hispanic, and 3% were Asian American. Of those respondents to the study, 56% of Whites, 60% of African Americans, 68% of Hispanics, and 67% of Asians Americans were employed in past year while caregiving
National and Federal Guidance
National Center for Cultural Competence (NCCC) suggests that organizations providing family supports need to align policies, structures, and practices to resource and institutionalize cultural and linguistic competence in the provision of family supports. The National Standards for Culturally and Linguistically Appropriate Services in Health and Health Care (the National CLAS Standards) provide 15 standards to advance health equity, improve quality, and help eliminate health care disparities by providing a blueprint for individuals and health and health care organizations to implement culturally and linguistically appropriate services.
State Efforts on Cultural Competency
States differ on their approaches to cultural competency o New York State’s Office of Mental Health integrates cultural competency into core standards o Washington State’s Department of Social and Health Services Aging and Long-Term Support Administration (ALTSA) developed a Cultural Competency Action Plan. o The State of Connecticut Department of Children and Families created a guiding principle specific to cultural needs.
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National Core Standards
Organizations such as Road Map of Core Competencies for the Direct Service Workforce, National Direct Service Workforce (DSW) Resource Center, ARCH National Respite Network and Resource Center National Respite Guidelines, and Association of Maternal & Child Health Programs (AMCHP) Standards for Systems of Care for Children and Youth with Special Health Care Needs all integrate cultural competency into their core competencies
Considerations for the Task Force for Adapting Cultural Competency in Respite Care
Research the demographics of your current respite providers and compare to the demographics of clients families Assess the cultural competency needs of respite providers and the cultural needs of clients and families Explore The National Standards for Culturally and Linguistically Appropriate Services in Health and Health Care as an option for comprehensive cultural competency strategies Explore cultural competency as a core competency for all respite providers
Research on Cultural Competency and Respite Care Demographic Data on Caregivers in the US
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“Caregiving in the U.S. 2015,”78 a study of caregivers conducted by National Alliance for Caregiving (NAC) and the AARP Public Policy Institute, found that: o It is estimated that 16.9% of caregivers are White (Non-Hispanic), 20.3% are African American, 19.7% are Asian American, and 21% are Hispanic. o Based on the study results, 47% of caregivers make less than $50,000 per year. However, these income statistics are different by race/ethnicity with 42% of Whites, 62% of African Americans, 61% of Hispanics, and 30% of Asians Americans making less than $50,000 per year. o Of those respondents to the study, 56% of Whites, 60% of African Americans, 68% of Hispanics, and 67% of Asians Americans were employed in past year while caregiving o When respondents were asked if they require a doctor, nurse, or social worker ask them about what they need to help care for your recipient 37% of Whites, 48% of African Americans, 36% of Hispanics, 56% of Asian-Americans reported needing this. o Require a doctor, nurse, or social worker ask you about what you need to take care of yourself 22% of Whites, 36% of African Americans, 30% of Hispanics, 44% of Asians Americans reported needing this. o Those participating in the survey who reported being LGBT, 7% were White, 11% were African American, 15% were Hispanic, and 3% were Asian American.
Caregiving in the U.S. 2015, National Alliance for Caregiving and AARP http://www.caregiving.org/caregiving2015/
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Cultural Competency from National Organizations
National Center for Cultural Competence (NCCC)79 suggests that organizations providing family supports need to align policies, structures, and practices to resource and institutionalize cultural and linguistic competence in the provision of family supports. Recommendations on how to consider cultural competency into their efforts include: o Cultural factors affect how family supports are offered. o Cultural factors affect what family supports are offered. o Cultural factors affect who provides family supports and where they are provided. NCCC advocates for policies that promote and sustain cultural competency for family supports. This includes: 1. mission statement that articulates values and principles for culturally and linguistically competent family supports; 2. establishment of policy, structures, and resources to conduct organizational selfassessment of cultural and linguistic competence at regular intervals; and 3. strategic planning processes that incorporate principles and practices of cultural and linguistic competence into all aspects of program design, implementation and evaluation.
Cultural Competency from Other States
New York State’s Office of Mental Health80 states that the respite worker practices cultural competency including: 1. demonstrates sensitivity to the cultural and ethnic norms of the family serve, 2. demonstrates a non-judgmental approach to caring for children whose backgrounds and values differ from their own, and 3. matches respite activities to the child’s cultural values. Washington State’s Department of Social and Health Services Aging and Long-Term Support Administration (ALTSA) developed a Cultural Competency Action Plan81 to assist the divisions to provide culturally and linguistically appropriate services to older adults and people with disabilities. As part of the plan, they 1. Review Cultural Competency Practices and Accountability Measures, 2. Building Community Partnerships, 3. Ensure Language Access.
79
Cultural and Linguistic Competence in Family Supports, National Center for Cultural Competence, http://nccc.georgetown.edu/documents/FamilySupports.pdf 80
Home and Community Based Services Waiver Guidance Document Respite Worker Competencies, New York State’s Office of Mental Health, https://www.omh.ny.gov/omhweb/guidance/hcbs/competencies/respite.html 81 Cultural Competency Action Plan, Washington State’s Department of Social and Health Services Aging and LongTerm Support Administration (ALTSA), https://www.dshs.wa.gov/sites/default/files/SESA/odi/documents/ALTSA14.pdf
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The State of Connecticut Department of Children and Families’82 guiding principle is that “services should be sensitive and responsive to cultural differences and special needs.”
National Respite Care Providers Core Standards
The Road Map of Core Competencies for the Direct Service Workforce83 identifies both person-centered practices and cultural competency as key areas for development for those working in Long-Term Services and Supports. o Person-centered practices assists individuals to make choices, plan goals, and provides services to help individuals achieve their goals. o Cultural competency respects cultural differences, and provides services and supports that fit with an individual’s preferences. The ARCH National Respite Network and Resource Center National Respite Guidelines, Guiding Principles for Respite Models and Services84 contains language related to cultural competency in respite care. o One area is related to family diversity where “each family’s unique characteristics such as race, ethnicity, language, family composition, socio-economic status, and religious beliefs. It is important that respite programs and providers respect these characteristics in the provision of respite services.” o “Respite services support the care recipient’s social development with respect to their cultural, family and social history.” Association of Maternal & Child Health Programs (AMCHP) Standards for Systems of Care for Children and Youth with Special Health Care Needs(CYSHCN)85 cultural competency standards include: o All CYSHCN and their families will receive care that is culturally and linguistically appropriate (attends to racial, ethnic, religious, and language domains) o Upon enrollment and transfer between insurance coverage (e.g., public and private), a consistent and culturally and linguistically appropriate mechanism for identifying CYSHCN, including children with significant health conditions, is in place to ensure that these children are referred to appropriate types and sources of enhanced care. o All children, including CYSHCN, receive periodic, developmentally appropriate, and recommended comprehensive screenings (to include screening for physical health, oral health, mental health, developmental, and psychosocial needs, and cultural and
82
The State of Connecticut Department of Children and Families, http://www.ct.gov/dcf/cwp/view.asp?a=2558&Q=314372 83 Road Map of Core Competencies for the Direct Service Workforce, National Direct Service Workforce (DSW) Resource Center, http://www.medicaid.gov/medicaid-chip-program-information/by-topics/long-term-services-andsupports/workforce/downloads/dsw-core-competency.pdf 84 The ARCH National Respite Network and Resource Center National Respite Guidelines, Guiding Principles for Respite Models and Services, http://www.dhs.state.mn.us/main/groups/aging/documents/pub/dhs16_166193.pdf 85 Association of Maternal & Child Health Programs (AMCHP) Standards for Systems of Care for Children and Youth with Special Health Care Needs, http://www.amchp.org/AboutTitleV/Resources/Documents/Standards%20Charts%20FINAL.pdf
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o o o
o
linguistic needs, preferences or limitations) as part of a well-child visit or other preventive visit and in response to triggering events such as hospitalization, trauma, or sudden onset of new symptoms, in accordance with Bright Futures Guidelines. Written and oral information that is provided for purposes of determining insurance eligibility and enrolling a child into public or private insurance coverage is culturally appropriate and provided in a manner and format appropriate for a child or their caregiver, including for those families who have limited English proficiency or sensory impairments. Provide appropriate resources to match the health literacy level, primary language, and culture of CYSHCN and their family. Palliative and hospice care utilizes family-centered models of care that respect individual’s preferences, value, and cultural beliefs, and provide family access to psychosocial screening and referrals to needed supports and services. Family strengths, including cultural and ethnic identities, are respected in the delivery of care. Care is delivered in culturally appropriate ways, respecting family desires for inclusion of extended family members in decision making. All written materials provided to CYSHCN and their families are culturally appropriate, provided in the primary language of the CYSHCN and their family, and provided in a manner and format appropriate for children and their parents or caregivers who have limited English proficiency or sensory impairments. A transition readiness assessment and plan of care, including a medical summary and emergency care plan, are first developed when a CYSHCN reaches age 14, and then regularly updated in partnership with the youth and her/his family or caregiver. A family’s cultural beliefs are respected in the development of the transition plan.
Colorado Culture-Based Programs
El Grupo VIDA86 is a network of Hispanic/Latino parents formed to provide mutual support for people with disabilities or special needs, their parents, family, and guardians. Lutheran Family Services African American Caregiver Support Program87 “is designed to give geriatric caregivers a sense of control, relieve their frustration, and provide them with ways to maintain their physical, mental and spiritual health. Rooted in cultural perspective, the program provides respite care, home visits, caregiver training/education, a caregiver support group, counseling and an annual caregiver’s conference.” Colorado Latino Age Wave88 is an initiative supporting the well-being of a rapidly growing Latino older adult population in Metro Denver through innovative services and programs.
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El Grupo VIDA, http://www.elgrupovida.org/ Lutheran Family Services African American Caregiver Support Program, http://www.lfsrm.org/caregiver-services 88 Colorado Latino Age Wave, Latino Community Foundation of Colorado, https://drive.google.com/file/d/0B46phQ6QHQeucTVyLW1fN3lyalk/view?pli=1 87
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Through a 2012 Community Assessment, the Colorado Latino Age Wave identified respite as a major issue including: o Many of these services are not affordable for low-income families. o Adult day care programs operate during nine-to-five business hours during the week. This scheduling does not fit the working lives of many Latinos. o Services provided by adult day programs are often not aware of or sensitive to the cultural preferences of Latino elders. In care facilities, this extends to details such as the food served, the décor, even the background music. o Elders often do not accept in-home assistance from anyone who is not a family member, and especially from care providers whose ethnicity, language and demeanor are outside of the elder’s experience. o In general, Latinos do not trust nursing homes or assisted living centers to provide quality care for their elders. Lower-cost facilities that are affordable for many Latino families are perceived as being substandard and often are. o Hospice care for elders near the end of life is not yet widely embraced by Latinos. Hospices are not perceived to offer culturally relevant services. o In certain situations, Medicaid allows health care consumers to pay family members to provide care. However, the hourly rate is very low and it is for a very limited number of hours. Few people know about it, and the process required to obtain this benefit is complicated. Federal Guidance on Cultural Competency
The National Standards for Culturally and Linguistically Appropriate Services in Health and Health Care (the National CLAS Standards)89 provide 15 standards to advance health equity, improve quality, and help eliminate health care disparities by providing a blueprint for individuals and health and health care organizations to implement culturally and linguistically appropriate services. o Principal Standard. Provide effective, equitable, understandable, and respectful quality care and services that are responsive to diverse cultural health beliefs and practices, preferred languages, health literacy, and other communication needs. o Governance, Leadership and Workforce. Advance and sustain organizational governance and leadership that promotes CLAS and health equity through policy, practices, and allocated resources. Recruit, promote, and support a culturally and linguistically diverse governance, leadership, and workforce that are responsive to the population in the service area.
89
The National Standards for Culturally and Linguistically Appropriate Services in Health and Health Care, Office of Minority Health, Department of Health and Human Services. https://www.thinkculturalhealth.hhs.gov/content/clas.asp
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Educate and train governance, leadership, and workforce in culturally and linguistically appropriate policies and practices on an ongoing basis. o Communication and Language Assistance Offer language assistance to individuals who have limited English proficiency and/or other communication needs, at no cost to them, to facilitate timely access to all health care and services. Inform all individuals of the availability of language assistance services clearly and in their preferred language, verbally and in writing. Ensure the competence of individuals providing language assistance, recognizing that the use of untrained individuals and/or minors as interpreters should be avoided. Provide easy-to-understand print and multimedia materials and signage in the languages commonly used by the populations in the service area. o Engagement, Continuous Improvement, and Accountability Establish culturally and linguistically appropriate goals, policies, and management accountability, and infuse them throughout the organization's planning and operations. Conduct ongoing assessments of the organization's CLAS-related activities and integrate CLAS-related measures into measurement and continuous quality improvement activities. Collect and maintain accurate and reliable demographic data to monitor and evaluate the impact of CLAS on health equity and outcomes and to inform service delivery. Conduct regular assessments of community health assets and needs and use the results to plan and implement services that respond to the cultural and linguistic diversity of populations in the service area. Partner with the community to design, implement, and evaluate policies, practices, and services to ensure cultural and linguistic appropriateness. Create conflict and grievance resolution processes that are culturally and linguistically appropriate to identify, prevent, and resolve conflicts or complaints. Communicate the organization's progress in implementing and sustaining CLAS to all stakeholders, constituents, and the general public.
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Research on Provider Training Summary Training for respite providers varies from state-to-state as standards and competencies are not widely adopted. Through a variety of funding mechanisms, states and/or state coalitions are delivering training to new and existing respite providers. Training programs have the option of using national and/or state core competencies as a guide to develop curriculums for respite providers. State Training Programs
State government and state coalitions can serve as a coordinator of training for providers in a state Lifespan respite grants are an option to build training infrastructure in states
National and State Core Competencies
States and/or training providers can adopt core competency models as a framework to training respite providers These frameworks can ensure that consistent training among respite care providers In addition to core competencies, respite providers can be assessed for their training needs.
Considerations for the Task Force for Adapting Cultural Competency in Respite Care
Assess the feasibility of creating an online inventory of training opportunities throughout Colorado Explore models that establish core competencies in Colorado. Explore models that credential/certify respite providers in Colorado.
Training and Respite Care Providers Training Resources Colorado
The Colorado Respite Project90 is funded through a Lifespan Respite grant with the goals of identifying and coordinating existing respite resources, establishing a lifespan respite program infrastructure, increasing the availability of trained respite workers and volunteers, and increasing awareness about respite services.
90
Colorado Respite Project, Colorado Respite Coalition, http://www.coloradorespitecoalition.org/about/careproject.php
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Training Resource in Other States
Easter Seals Wisconsin and Respite Care Association of Wisconsin’s “Caring Network”91 training educates highly trained respite care providers with the required skills to provide inhome respite care for individuals with a variety of disabilities, including highly challenging behaviors, and basic medical and personal care needs. o The goal of the training is to address the shortage of qualified in-home respite care providers in Wisconsin and expand an online referral source for families and caregivers to access these trained providers in their communities. o Lifespan Caring Network Training is an online course that includes the topics Disability Basics, Lifts & Transfers, Personal Care/ Daily Living Skills, Medication Administration, Communication Techniques, Abuse and Neglect, Caring for Challenging Behaviors, Free Time Activities, and Making Connections (meeting/ training with the family). Missouri Respite Care Service Provider Training92 is intended to prepare a respite care service applicant for providing respite services. The goals of the training are to develop trust between providers, families, and the respite program agency, and help them work together in children’s best interests; build relationships and communication between providers and families; share information about the children who will be using respite services and develop a deeper understanding of their needs; prepare providers with information and strategies to care for children with a variety of special needs; provide expectations regarding the role of a respite provider; and provide information regarding available resources
Respite Care Provider Needs
The Alabama Lifespan Respite Resource Network93 conducted a statewide study to understand the needs of providers to determine met and unmet needs for respite training among providers serving family caregivers of individuals with disabilities and chronic illnesses. o Of respondents to the survey, 40% indicated the need for one-time training on moving and lifting, bathing and personal hygiene, handling incontinence, feeding and nutrition, and managing medications. o An additional 30% of providers desired annual training on feeding and nutrition, managing challenging behaviors, keeping individuals safe at home (first aid, cardiopulmonary resuscitation [CPR], emergency response, fall prevention), and understanding complex care needs of individuals.
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Easter Seals Wisconsin and Respite Care Association of Wisconsin “Caring Network”, http://respitecarewi.org/content/provider-trainings 92 Missouri Respite Care Service Provider Training, https://dss.mo.gov/cd/fostercare/pdf/missouri-respite-caretraining.pdf 93 Determining Provider Needs for Respite Training, Results of an Alabama Survey, Brian F. Geiger, Marcia R. O’Neal, SAGE Open Dec 2014, 4 (4) DOI: 10.1177/2158244014563043 http://sgo.sagepub.com/content/4/4/2158244014563043
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o Between 24% and 28% of respondents reported that they never desired training in moving and lifting, bathing and personal hygiene, handling incontinence, and managing medications. o The greatest percentage of respite providers for one-time training included Understanding principles of quality respite care Reporting suspected abuse, neglect, and exploitation; determining which caregivers most need family respite Making referrals to social service and respite agencies. o Nearly 30% of respondents selected three topics for annual training: Handling forms, documents, and legal issues Understanding disabilities (learning, dementia/Alzheimer’s, seizures) Managing their own emotional and physical stress. National Core Standards for Respite Providers
“The Centers for Medicaid & Medicare Services (CMS) funded the Road Map of Core Competencies for the Direct Service Workforce94, a multi-phased research project implemented through the National Direct Service Workforce Resource Center (DSW RC) to identify a common set of core competencies across community-based LTSS sectors.” o The core competencies were designed to inform direct support service delivery and promote best practices in community-based LTSS, serve as a resource in developing worker training and performance improvement practices for the community-based DSW across LTSS sectors, and serve as the foundation for career lattices and ladders. o The competencies include Communication; Person-Centered Practices; Evaluation and Observation; Crisis, Prevention and Intervention; Safety; Professionalism and Ethics; Empowerment and Advocacy; Health and Wellness; Community Living Skills and Supports; Community Inclusion and Networking; Cultural Competency; Education, Training, and Self-Development Association of Maternal & Child Health Programs (AMCHP) Standards for Systems of Care for Children and Youth with Special Health Care Needs95 standards include: o Overall System Outcomes for CYSHCN are Family Professional Partnerships; Medical Home; Insurance and Financing; Early and Continuous Screening and Referral; Easy to Use Services and Supports; Transition to Adulthood; and Cultural Competence o Core Domains for System Standards are Screening, Assessment and Referral; Eligibility and Enrollment; Access to Care; Medical Home, including: Pediatric Preventive and
94
Road Map of Core Competencies for the Direct Service Workforce, National Direct Service Workforce (DSW) Resource Center, http://www.medicaid.gov/medicaid-chip-program-information/by-topics/long-term-services-andsupports/workforce/downloads/dsw-core-competency.pdf 95
Association of Maternal & Child Health Programs (AMCHP) Standards for Systems of Care for Children and Youth with Special Health Care Needs, http://www.amchp.org/AboutTitleV/Resources/Documents/Standards%20Charts%20FINAL.pdf
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Primary Care, Care Coordination, and Pediatric Specialty Care; Community-based Services and Supports, including: Respite Care, Palliative and Hospice Care, Homebased Services; Family Professional Partnerships; Transition to Adulthood; Health Information Technology; Quality Assurance and Improvement; and Insurance and Financing State Core Standards for Respite Providers
New York State’s Office of Mental Health96 respite worker competencies include: o Knowledge in: 1. behaviors associated with serious emotional disturbances in children and adolescents, 2. effective responses to undesirable behaviors, 3. conflict management techniques with children, 4. caring for children with traumatic histories, 5. principles of the individualized care model, 6. developmental stages and tasks and appropriate recreational activities, 7. impact of learning disabilities and developmental delays on engagement in relationships and activities, 8. HCBS Waiver philosophy and guidelines, and 9. worker safety in the home and community. o Tasks or skills that the respite worker must demonstrate competencies including safety, engagement of child, planning and implementing recreational activities, team process, documentations, and fulfillment of requirements.
96
Home and Community Based Services Waiver Guidance Document Respite Worker Competencies, New York State’s Office of Mental Health, https://www.omh.ny.gov/omhweb/guidance/hcbs/competencies/respite.html
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Research on Informal Respite Definition There are varying definitions of informal respite. Informal respite is generally understood to be respite provided to a caregiver by family or friends, so the primary caregiver has time to recharge and have personal time free of the stress and responsibilities of caregiving. The Colorado Respite Services Task Force has developed the following draft definition of formal and informal respite services: “Informal respite refers to unpaid assistance with care typically performed by family members, relatives, friends or volunteers. Formal respite refers to care provided by individuals who are paid professional and paraprofessional caregivers.” Informal respite can include activities such as custodial supervision, companionship, personal care, meal preparation, household chores, financial aid, transportation and help in dealing with bureaucratic forms and services. These can be provided in-home, at the home of friend/family member, or on-site of community activities. Notably, informal respite is often framed in contrast to formal respite (use of paid services from a professional / paraprofessional). 97 Data Data on informal respite is inherently difficult to track, given that it is outside formalized tracking mechanisms, and the numerous definitions for informal respite further add to the difficulty of quantifying the amount of informal respite that is occurring. That said, some studies have examined aspects of informal respite. Pertinent findings of these studies are summarized below.
2005 study on Older Minnesotans98 o Informal sources of care (spouses, son/daughter in-laws, friends, and/or relatives make up the majority of providers of assistance for activities of daily living. o Church-sponsored and volunteer-based programs provide a basic level of support for many older persons across the state. 2009 Caregiving in the U.S. Study99 o Among caregivers of an adult recipient who is not in a nursing home, 68 percent now have at least one other unpaid caregiver helping their loved one, an increase from the 59 percent who reported this type of help in 2004. 2013 study on parents of children with autism100
97
Susan C. Reinhard, Ann Bemis, Nirvana Huhtala, “Discussion Paper: Community Living Exchange, Defining Respite Care,” Rutgers Center for State Health Policy, January 2005: 7. 98 Continuing Care Administration. “Status of Long-Term Care in Minnesota: 2010; A Report to the Minnesota Legislature.” 2010. http://www.dhs.state.mn.us/main/groups/aging/documents/defaultcolumns/dhs16_151700.pdf 99 "Caregiving in the U.S. - Executive Summary,” National Alliance for Caregiving (in collaboration with AARP), November 2009: 12.
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o 64 percent of the children spent time with a respite provider; grandparents were most often cited as these informal providers. Other informal providers included babysitters, community agencies, and extended family members. 2013 Massachusetts study (PPAL / MDHS)101 o 65.8 percent said that family members such as grandparents or aunts and uncles were their primary choice. o 44 percent chose close friends to provide care.
Given that none of the studies listed above specifically focused on examining informal respite, and these data points were pulled out from the larger study results, this highlights the difficulty of tracking and showcasing the enormity of the amount of informal respite occurring. These studies also suggest the importance of a consistent definition of informal respite, to be able to best compare study results, and potentially replicate the results in future and/or follow-up studies. Reimbursement Given that informal respite care is outside the formalized system of locating and accessing established respite care services, such as through a home health care agency, a major concern of those using informal care is how to pay for it, other than out of pocket. Examples of how other states have found ways to pay providers for informal respite are below.
Maine Foster Care o Use of an “unlicensed provider” rate Unlicensed homes in Maine receive a rate of $10.00 a day, no matter what the Level of Care of the beneficiary is. The caregiver is strongly encouraged to go through the process to become licensed. Many of these unlicensed caregivers are kinship placements.102 No resources were found to indicate that funding for unlicensed providers is separated from the funding stream used to reimburse licensed providers. Ohio Medicaid o Individual Options and Level 1 Medicaid waivers reimburse for informal respite if provided by an approved independent provider or friend103. An individual may become an approved provider by obtaining certification from the Ohio
100
Shaun Heasley, “Respite Care Has Big Impact For Autism Parents,” Disability Scoop, April 8, 2013. http://www.disabilityscoop.com/2013/04/08/respite-care-autism-parents/17659/ 101 Deborah Fauntleroy, Christina Fluet, Lisa Lambert, “Respite Care: What Families Say,” Parent/Professional Advocacy League and Massachusetts Department of Mental Health, February 2013. http://ppal.net/wpcontent/uploads/2011/01/Respite-Care-What-Families-Say.pdf 102 Maine Department of Health and Human Services, Office of Children and Family Services, “Respite Care Policy,” effective 1/27/2010. https://www1.maine.gov/dhhs/ocfs/cw/policy/v__g-1__levels_of_care.htm 103 Ohio Respite Coalition, “Lifespan Respite Strategic Plan 2013-2018.”: 7. http://www.lifespanrespite.memberlodge.org/Resources/Documents/Strategic%20Plans/Lifespan%20Respite%20Str ategic%20Plan%202013-2018%20Final.pdf
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Department of Developmental Disabilities. This process includes completing a provider orientation, submitting necessary documentation (including proof of completion of first aid/CPR certification, and provider initial certification training), and creating a provider account with DODD.104 Up to $2,500 reimbursed annually for Level 1 waiver. Ryan White program (federal program, administered by state / city agencies) 105 o Reimburses for informal respite provided certain provisions are met. Liability issues are addressed (i.e., appropriate releases are obtained in order to protect the client). Reimbursement is for actual costs of care. No reimbursement is made to the primary caregiver or client.
Depending on the definition of informal respite, which may or may not incorporate payment into the use of a friend or family member who serves as the respite provider, the above methods show that there are states who have been able to recognize that informal respite occurs, and that it is beneficial to the users of respite to be able to pay for these services. By devising a rate for unlicensed or independent providers, but also providing encouragement or incentives for the informal provider to become licensed, or requiring certification, the states also set up protective measures to ensure the safety of the beneficiary, thereby combating one of the concerns of using informal respite. Accessing Informal Respite This section details how organizations or agencies, from the national to local level, have addressed the issue of people needing better information or resources on how to access informal respite. •
National level – Existing resources focus on formal respite, but have good models for locating such services (i.e. ARCH National Respite Network and Resource Center’s map)106 •
•
Can narrow by age / condition of beneficiary; provider type / distance from work or home
State level – Central Massachusetts Agency on Aging brief on Respite Care: Provided explanation of respite options / tips for maximizing use of informal respite, resources for ensuring quality informal respite care, etc.107
104
Ohio Department of Developmental Disabilities, ‘Information for Independent Providers,” http://dodd.ohio.gov/Providers/BecomeAProvider/Pages/Independent.aspx 105 “Program Monitoring Standards – Part A,” HRSA/HAB Division of Metropolitan HIV/AIDS Programs, April 2013: 46. http://hab.hrsa.gov/manageyourgrant/files/programmonitoringparta.pdf 106 ARCH National Respite Network and Resource Center, “National Respite Locator,” http://archrespite.org/respitelocator
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– Arkansas Lifespan Respite Coalition: sponsored free volunteer respite trainings in eight locations around the state.108 •
Local level – CCBs in Colorado: offer limited family resources to assist the caregivers of family members with I/DD, and also offer assistance with Medicaid waivers for respite care, but do not pay for informal respite. – Ohio: local Mental Health board (if county board allots funding): families can apply to board for funds to be used for respite care services. 109 – Boulder County, CO: Respite and Companion Volunteer Program has network of screened and trained volunteers are matched to provide one-on-one companionship with an older adult who is experiencing isolation, or some degree of compromised health, providing respite for the primary caregivers.110 – The Adoption Exchange: has online and current list of providers who have completed the COPARC Respite Care Training or AdoptCare Training in the past three years111 – Right Turn (Nebraska): connects adoptive/foster parents in NE to informal and formal respite care services, as well as providing support groups that include dinner and childcare 112 – Woven Families support group at Canyon View Vineyard Church (Grand Junction, CO)113: Has a list of Woven Families’ network of respite providers in the area, a description of services offered, with contact information and fees (most do not charge fees); they also have volunteers complete a background check.
While varying levels of assistance exist from the national level to the local, community-based level, the closer to the beneficiary, the more relevant the resource is, such as the church support group who keeps an updated list of church members willing to provide respite. However, larger state agencies can support expanding or maintaining good quality informal respite provider networks, such as Arkansas’ statewide volunteer respite trainings. Challenges Challenges within informal respite include: 107
Central Massachusetts Agency on Aging, “Respite CrossRoads,” www.seniorconnection.org/pdfs/respite_section.pdf 108 Arkansas Lifespan Respite Coalition, “Volunteer Respite Training Save the Date,” http://www.adcpti.org/Assets/2015%20volunteer%20respite%20training%20save%20the%20date2%5B4%5D.pdf. 109 Ohio Respite Coalition, “Lifespan Respite Strategic Plan 2013-2018.”: 7. http://www.lifespanrespite.memberlodge.org/Resources/Documents/Strategic%20Plans/Lifespan%20Respite%20Str ategic%20Plan%202013-2018%20Final.pdf 110 Boulder County, “Respite Services.” http://www.bouldercounty.org/family/seniors/pages/respiteserv.aspx 111 https://www.adoptex.org/the-adoption-journey/post-adoption-services/colorado-coparc/local-respite-careproviders 112 Right Turn, “Respite Care Connections,” http://www.rightturnne.org/services/respite.html 113 Canyon View Vineyard Church, “Woven Families,” http://canyonviewchurch.com/woven-families/
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Caregiver as barrier o Internal feelings of failure or inadequacy of coping with the situation Difficulty in locating services Concerns over: o Quality of services Lack of training of informal respite workers o Cost o Liability on part of both caregiver and informal respite provider114
The above barriers were listed by Jill Kagan, Chair of the ARCH National Respite Coalition, in testimony to the House Subcommittee on Labor, HHS and Education Appropriations in April 2010.115 These barriers were also echoed in many of the key informant interviews conducted for this project with people in Colorado and other states or national organizations. For key informants in rural locations in Colorado, the difficulty in locating services, particularly given the small amount of available providers, was emphasized.
114
HRSA/HAB Division of Metropolitan HIV/AIDS Programs: 46. “Public Witness Testimony of Jill Kagan,” House Subcommittee on Labor, HHS and Education Appropriations, April 12, 2010: 2. http://www.archrespite.org/docs/NRC_FY11_House_Testimony_Lifespan_Respite.pdf 115
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Research on Access to Respite Services Limitations on Respite within Medicaid (Colorado) Within Colorado Medicaid, limitations on respite care services exist within each waiver. Limitations exist related to the location where respite can be provided, the provider of respite care services, and the time period (how long respite care can be provided). See Attachment A for a table detailing limitations on respite within Colorado Medicaid waivers. Navigation through System to Access Services Given the complexity of available services, states and agencies have recognized the utility of providing services or tools to help consumers navigate through the system to better locate the services they need and for which they are eligible, while minimizing the time needed to do so.
Use of 2-1-1 system (phone or Internet-based linkage to local resources) o Colorado: Current database contains links to respite sources (Medicaid, Veterans’ Affairs, private home health care agencies) Colorado 2-1-1 is a private-public partnership that is funded by local nonprofits, government agencies, local initiatives, and business and private foundation communities in Colorado. Currently hosted by VisionLink Although it is an available resource, feedback is that it is not well-staffed with people knowledgeable about respite, and therefore not able to be leveraged heavily. Kinship Navigator Program o Varies from state to state, but premise is that a caregiver can speak to a single person who is able to determine eligibility for services, and connect them to the right people and services (health, financial, legal, and community) o Accessible through 2-1-1 (NJ), website, e-mail, or specific phone number o Administered via different programs (AAA, state Human Services office, nonprofits) o Delaware116: Administered by Children & Families First Funded by CARE Delaware, via the Older Americans Act through the National Family Caregiver Support Program. Provides a free one-stop-shop information and referral service for grandparents and other relatives who are currently raising related children, whose parents are either unable or unwilling to care for the children themselves.
116
Children and Families First Delaware, “Kinship Navigator,” http://www.cffde.org/services/olderadults/kinshipNavigator.aspx
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CFF Elder Care Specialists work directly with caregivers to identify their specific needs and help them find and access programs and services – local, state or national – that may provide them with some added stability or support. 117 o Ohio : Administered by Area Office on Aging of Northwestern Ohio Guides grandparents and other relatives who are raising children in their extended families to services in the community. Program navigators: Talk with caregivers about their family's situation Determine the services wanted/needed Mail caregivers a packet with resources and information and monthly newsletter that contains upcoming event information Provide follow-up to see how the caregiver is doing with getting connected to necessary services If needed, suggest other services or agencies for caregiver to contact 118 o New Jersey : By dialing 2-1-1, eligible caregivers can get help addressing immediate problems, and will be referred to a local Kinship agency, which will work with caregivers to access additional services. The local Kinship agencies serve three functions: Staff from the agencies helps caregivers “navigate” other forms of government assistance. Agencies determine if the caregiver’s family is eligible for Kinship Navigator program benefits such as help with short-term expenses for the relative child, such as furniture, moving expenses, and clothing. Agencies provide technical support and guide the family through the process of Kinship Legal Guardianship if the caregiver wishes to make a legal commitment to the child. o Washington DSHS: Kinship Navigator program: Kinship Navigators connect caregivers with community resources, including healthcare, financial and legal services, support groups, and emergency funds.119 117
The Area Office on Aging of Northwestern Ohio, “Kinship Navigator Program,” http://www.areaofficeonaging.com/kinship.html 118 New Jersey Department of Children and Families, “Kinship Navigator Program,” http://www.nj.gov/dcf/families/support/kinship/ 119 Northwest Regional Council, “Kinship Caregiver Services,” http://www.nwrcwa.org/kinship-caregiverservices/#section5
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Virginia: Nonprofit organization called VirginiaNavigator runs a family of websites to connect people to needs-specific resources (for Elderly, Disabled, and Caregivers)120 o Includes personal contact through the “Ask an Expert” feature New York: Disability Program Navigator121 o Project created by the Department of Labor and the Social Security Administration to increase the use of the One-Stop System and make it more accessible to individuals with disabilities.
Similar to the above navigation programs, single entry points for respite refer to a model in which a person seeking respite care would be able to only have to access one location/agency, and be able to access all the services for which they are eligible. Models for single entry points in Colorado and other states are listed below.
Colorado o Respite Taskforce members are currently working with Colorado Department of Health Care Policy and Financing (HCPF) to have agencies incorporate respite care services within the “No Wrong Door” process for LTSS. Other models: o PeerPlace: software company122 PeerPlace ADRC is a platform designed to assist states with transforming and/or consolidating their LTSS into a No Wrong Door system for all populations and all payers. PeerPlace LTSS is an extension of the ADRC model, and automates the assessment / eligibility determination of clients, helping to match their needs with the federal, state, and local programs for which they are eligible.
120
Virginia Navigator. http://www.virginianavigator.org/ PeopleInc., “Disability Program Navigator,” http://www.peopleinc.org/children_services_home/day__vocational_programs/disability_program_navigator/index.html 122 PeerPlace, “Key “Initiatives,” http://www.peerplace.com/key-initiatives.php 121
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Impact, Barriers, and Measures for Evaluation of Respite Care Services Evidence-based research for respite care services is lacking. How best to provide respite services and demonstrate the benefits of respite care services on the caregiver, care recipient, family, as well as tax payers and communities at large, is largely unknown. Understanding Return on Investment means understanding needs, supply, demand, and the value of meeting the needs. To better understand the local impact and ROI of respite care services in Colorado, a scan of seven recent caregiver studies was conducted, and their findings were analyzed. This also included an analysis of what measures were used to understand impact and quality of respite care services. Additionally, interviews with caregivers and community leaders familiar with respite care were conducted to gather more information. The scan of organizations that conducted surveys on the impact of respite care services in Colorado included: Parents of Adults with Disabilities in Colorado (PADCO), Latino Age Wave, the Colorado Respite Coalition, Envision Community Center Board in Weld County, and the Gap Analysis for HCPF Division for Intellectual and Developmental Disabilities Community Living Office. One study was a national survey called the Evercare Study of Hispanic Family Caregiving in the United States. Surveys, focus groups, and in one case, community meetings, were conducted to gather information about respite care services. All but one study, the Latino Age Wave focus groups (which was limited to the Denver metropolitan area), collected information from caregivers statewide. Four of the seven studies targeted caregivers of adults and children with disabilities. One study targeted Latino elder caregivers. For those Colorado studies in which the sample size was known, there were 962 caregivers. It is not possible to determine whether specific caregivers participated in more than one of these efforts. In terms of interviews, HMACS researchers spoke with three caregivers and one care recipient. Two of these caregivers now run organizations that provide respite care service. See Appendix B for the caregiver interview guide. All of the caregivers who were interviewed considered their community to be urban. All the caregivers who were interviewed accessed respite care informally, and did not have financial support through a Medicaid waiver. Care recipients included an elderly mother, a child with a disability and special needs, and a spouse with Multiple Sclerosis. Additionally, HMACS researchers spoke with ten organizations in Colorado and nine states about the impact of respite care. See Appendix C for the state and organizational interview guide and Appendix D for the list of organizations and states interviewed. In general, interviews with states revealed that states are not evaluating the impact of their respite care services in terms of return on investment. One exception is Nebraska, as mentioned above in the section on ROI. Other states face the same challenges as Colorado in terms of in lacking quantitative, rigorous evidence on the ROI of respite care. States reported that they know, anecdotally, that respite care is important and valuable. States know their utilization of respite care services is high and they 87
cannot and do not meet the demand. Similar barriers to respite care for families exist in other states as they do in Colorado.
Wyoming: “The ROI is mostly anecdotal. How helpful it is for those families to have a little bit of a break. We are constantly engaging families in how the services are working or them. Generally, people are satisfied.” They are going to take part in National Core Indicators.
Ohio: Starting to encourage agencies to examine outcomes in addition to outputs (i.e. number of meals provided) to begin moving towards measuring impact. They are experiencing difficulty in deciding what outcome measures to use. One approach they suggestion was looking first at nursing home placement, as research shows that one of the major indicators of nursing home placement is caregiver stress/burnout, and assessing the extent to which the availability and quality of respite care service led to the caregiver’s decision. Overall, Ohio reported “it will take heavy duty research to be able to specifically quantify the impact of respite care service”.
Nebraska: Using the Administration of Aging funds to do this, Nebraska has created an evaluation system to start collecting data across programs. They have developed a three year respite evaluation process to assess respite utilization to determine the cost effectiveness of respite by population and funding source to determine how respite is being used and its impact to assess the cost savings to the various systems.
Evaluation of Respite Care Service in Colorado The seven studies all explored varying aspect of respite care. A summary of the focus of each survey is provided to help the taskforce learn what information is currently being collected from caregivers in Colorado to understand respite care services.
Evercare Study (National): Focused on the caregiving situation including hours spent per week providing care and the number of hours assisting with ADL and whether the caregiver experienced a change in employment.
Gap Analysis: Focused on understanding the extent to which caregivers had crisis respite care provider if they wanted one, and whether it was available when and where they wanted it. The analysis also looked into the frequency of changing providers.
Respite Care Coalition Needs Assessment: Focused on the impact of caregiving on the caregiver, including the benefits of respite care on the caregiver and on family dynamics, as well as the ideal amount of respite care and the challenges the caregiver faces in providing care (i.e. health). It also asks about funding and support for respite care services and whether a caregiver missed hours of work outside the home. Lastly, it inquires as to
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how the caregiver used the respite time and the barriers to receiving additional respite care.
PAD-CO Caregiver Survey: Focused on the barriers to respite care for a caregiver, as well as what types of respite care are needed, and what resources currently exist that you use.
PAD-CO Parent Provider Health Effects: Focused on the physical and emotional/mental component of caregiving and the impact that this has on the caregiver. It specifically looks at the impact of caregiving on physical injuries to the caregiver (i.e. back injuries) and other health impacts, including having no energy, lack of sleep, depression, and other mental diagnosis. Lastly, it explores what funding or support a caregiver has for respite services, including Medicaid or grants, and whether a caregiver has good unpaid supports to help them. The survey also asks the question as to whether a caregiver can “see the light at the end of the tunnel”.
Envision Family Support Drop Off Respite Satisfaction Survey: Focused on caregivers and how often they use a respite service and how the caregiver uses the time while their child/children are participating in the drop-off respite program. It asks about overall satisfaction with the program, including time of service and the activities offered. It also asks about the impact of the respite on the caregiver, including whether stress and anxiety levels have changed.
Latino Age Wave Focus Groups: Explored with participants the barriers to accessing respite care, including awareness of the services, availability, and affordability.
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Collective Findings from Existing Studies and Interviews Taken together, the surveys and interviews begin to tell a collective story of respite care services in Colorado from the perspective of the caregiver. Details about each survey, including timeframe, target care recipient population, methodology, research questions, measures, and findings are included in an Excel spreadsheet shared with the Taskforce. While the impact of respite care on the caregiver, care recipient, and society is still not extensively known from this research, it does start to provide a glimpse of the impact here in Colorado. There are some limitations to the data in that it is all self-reported caregiver data. The collective findings are broken down into utilization, funding, barriers, impact, and use of the time offered by respite care services from the perspective of the caregiver. Utilization and Awareness of Respite Care: The availability and affordability of appropriate respite care services is a barrier to the amount of respite care services actually needed.
Very few respondents use respite care regularly (24%) with most (41%) saying "yes, a few times in the past" (Respite Care Coalition Need Assessment).
Approximately one in two caregivers of dual diagnosis individuals have none or limited access to respite care services (Gap Analysis).
One caregiver learned about respite care services through their resource case worker, saying that it was easy for them to find what was available, but they did not find anything that met their needs and their ability to pay (Caregiver Interview).
One caregiver felt that respite care services is learned about “through word of mouth” and “referrals from professionals, including care providers, hospice, estate planning lawyers, elder law attorneys, nonprofit social service agencies” (Caregiver Interview).
Funding for Respite Care: Families report limited access to financial assistance.
Waiver funding, family and friends, and “none” are the top three resources selected by respondents (PAD-CO Care of Caregivers Survey).
Over half (51.2%) of respondents do not received any financial assistance. (Respite Care Coalition Survey - Needs Assessment)
The majority of respondents (85%) have help from “the system” (i.e., an HCBS Waiver, Nursing, Medicaid State Program or the like) (PAD-CO Parent Provider Health Effect).
Over half (63%) of respondents have no unpaid supports (i.e. friend, neighbor, relative, volunteer, etc.) (PAD-CO Parent Provider Health Effect).
Impact of Respite Care: There are benefits to both the caregiver and care recipient, but research approaches largely focused on the caregiver. 90
Respite care resulted in less concern about safety for the caregiver, others, and the care recipient. (Respite Care Coalition Survey - Needs Assessment)
Responses indicated that respite care did not consistently lower the likelihood that the care recipient may be placed in an out-of-home setting. Because these findings are based on self-reports, there are limitations in the data. (Respite Care Coalition Survey - Needs Assessment)
Seven out of nine families said their stress and anxiety levels dropped by utilizing a dropoff respite program, with one person reporting levels stayed the same (CCB Envision Drop off Respite Satisfaction Survey).
Impact of caregiving: 78% off respondents said caregiving was moderate (32%) or hard (48%). The emotional or mental component of care is either hard (45%) or intensely hard (33%) for majority of respondents. Most respondents lack sleep (36%) or are feeling depressed (28%). 14% have no energy and 11% have back injuries. (PAD-CO Parent Provider Health Effects).
When asked to rate on a scale of 1 to 10 the impact of respite care on their own health and well-being, caregivers responded with a “10 or more” and “a 20”.
Caregivers responded that respite care services had a positive impact on them or their families. One explained that “respite is a method of self-care that is critically important. It is an extension of caring for the loved one because the caregivers cannot carry on if they do not get a break. It is time to breathe and a conversation with my husband is actually possible…Respite also provided time to spend with my other typically developing daughter”.
Another caregiver explained that for his family member, who needed the respite, “Respite allowed him to rest and recover and upon some recovery was able to stabilize and continue to accept help. He began spending time with his friends and getting away somewhat regularly”.
Use of respite time by caregivers: Respite time was less often used by the caregiver for rest and medical appointments, suggesting that caregivers secondarily take care of their own medical and health needs.
Most caregivers use their respite time for errands, time with family/friends, and recreation/leisure time, followed by resting, medical appointments, and working (Respite Care Coalition Survey - Needs Assessment)
Typically, families spend their respite time shopping/errands, followed by cleaning, resting, socializing, and other (CCB Envision Drop off Respite Satisfaction Survey) 91
Barriers to Respite Care: Insufficient number of providers that can serve the more extreme or needy individuals is a barrier, possibly as a result of lack of sufficient reimbursement or lack of training. “All” indicates that the barrier was mentioned in all of the following: the state and Colorado organization interviews, caregiver interviews, and the surveys.
Insufficient number of providers (All)
Low rate or reimbursement for providers (All)
Need providers who can serve a continuum of needs, and perhaps, paid on that continuum of needs. (All) o One caregiver reported that the reason they didn’t use more formal respite services is because it was cost-prohibitive and it was hard to find a skilled respite provider who could meet their child’s needs, specifically saying “I did not really find respite services at all. I think there is a completely inadequate supply in Colorado and that it is completely unaffordable.” o One caregiver reported that finding the right respite care provider is challenging, saying “If the relationship is going to work, the respite provider must have any specific skills needed to provide the right care. Just a warm body does not count as respite.” o One caregiver opts to use informal family care because “…because there are too many things that could go wrong and we can’t afford higher skilled respite. Each individual’s needs for caregiving are very different and it is crucial that they be well understood.”
Need providers who can serve across condition/need cross-system training (Gap Analysis)
Lack definition for therapeutic respite that addresses medication management, behavioral interventions, stabilization, and crisis prevention (Gap Analysis)
There is not a billable service for critical supports and services for families (Gap Analysis)
Lack culturally relevant services, as provided by the Latino/Hispanic population (Latino Age Wave, Evercare Study)
Awareness of services (All)
Recommendations to the Legislature offered by the Interviews with Caregivers
“There need to be more options and more affordable options available. It is so desperately lacking.”
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“There should be more easily accessible information and word of mouth about respite and what’s available.”
“There should be training for special needs patients, both behavioral and medical. Training of people working as respite providers should be mandatory and they should be required to have continuing training updates ongoing.”
“Funding for subsidies is too low and should be increased. Medicaid reimbursement is too low. It prevents more providers from entering the field.”
“People are unprepared for the cost of respite, long term care and simple in home care support. Better education is needed for those with low funds. There should be more training for families who are taking on caregiving themselves. Basics techniques such as transferring the loved one or bathing them should be taught. People often hurt themselves without proper techniques and then they themselves are unable to continue providing care.”
List of Potential Outputs/Measures Currently being used by Colorado Organizations The following measures are organized by several categories, including the need for services, impact on caregiver, care recipient, family, and society, as well as the demand for, access to, and quality of respite care service. It is interesting to note that not one survey hits on all of these measures. Need for Respite Care Services:
Number of hours spent per week providing care (Evercare Study) Number of hours assisting with ADL (Evercare Study) Number of respite care hours used (Evercare Study, CCB Envision Drop off Respite Satisfaction Survey) Number of hours of respite care needed by a family (Respite Care Coalition Survey - Needs Assessment Caregiver spending on respite care (Respite Care Coalition Survey - Needs Assessment, Family Supports and Services Survey123)
Impact on Caregiver: Description of how respite care time is used by the caregiver (Respite Care Coalition Survey - Needs Assessment, (CCB Envision Drop off Respite Satisfaction Survey) Change in employment due to caregiving (Respite Care Coalition Survey - Needs Assessment, Evercare Study) Change in caregiver safety (Respite Care Coalition Survey - Needs Assessment) 123
The Family Services and Supports Program (FSSP) State Survey for fiscal year 13-14 shows that statewide, 36% of funds ($952,472) was spent on respite care services.
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Change in anxiety (CCB Envision Drop off Respite Satisfaction Survey) Change in stress (CCB Envision Drop off Respite Satisfaction Survey)
Impact on Care Recipient: Change in care recipient safety (Respite Care Coalition Survey - Needs Assessment) Prevention of out-of-home placement (Respite Care Coalition Survey - Needs Assessment Impact on Family: Impact on family dynamics (Respite Care Coalition Survey - Needs Assessment) Impact on Society: Prevention of out-of-home placement (Respite Care Coalition Survey - Needs Assessment) Quality of Respite Care Services: Satisfaction with the respite care service (CCB Envision Drop off Respite Satisfaction Survey) Access to Respite Care Services: Currently have a respite care provider (Gap analysis) Don’t need a respite care provider (Gap analysis) On a waitlist for a respite care provider (Gap analysis) Wait too long for an appointment with a respite care provider(Gap analysis) Respite Care providers are not available when needed (Gap analysis) Respite Care providers are not available in my local area (Gap analysis) I change providers often (Gap analysis) Barriers to Respite Care (PAD-CO Care of Caregivers) Funding sources for respite care (PAD-CO Care of Caregivers, PAD-CO Parent Provider Health Effects, Respite Care Coalition Survey - Needs Assessment ) Existing Research on Respite care Our findings regarding the insufficient research on the benefits and impact of respite care services on the caregiver, care recipient, and society align with the recent conclusions of the ARCH National Respite Network and Resource Center. 124 Over the course of 18 months, an expert panel of respite researchers sought to accomplish an in-depth exploration of the current status of respite research, propose strategies to overcome barriers to research, and lastly, develop a plan to encourage rigorous research in key areas that will translate to meaningful strategies and approaches to care. Overall, the report provides a review of the current state of 124
ARCH National Respite Network and Resource Center. 2015. A research agenda for respite care: Deliberations of an expert panel of researchers, advocates, and funders.
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respite research, respite care definitions and framework, methodological issues in respite research, and recommendations for future respite research. The report also covered funding opportunities for research that the Task Force may want to consider as supplemental or matching support to any support from the legislature. The report also describes various outcomes to study as possible short-term outcomes of respite services, as well as longer-term outcomes such as changes in well-being over time. The Research Panel identified six categories of recommendations: 1. 2. 3. 4. 5. 6.
Improved research methodologies Individual, family and societal outcomes research Research on cost-benefits and cost effectiveness Systems change research to improve access Research on competency and training needs of providers Translational research
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CONCLUSIONS: USING THIS RESEARCH TO DEVELOP RECOMMENDATIONS The research contained in this report provides strong indications of needs and gaps in respite services in Colorado, including variation in needs and supply across the state, as indicated by provider maps, hotspots, population projections, utilization patterns and qualitative data from caregivers and others. These data suggest that unmet needs may be greater in rural areas, where there are fewer providers and may be a higher percentage of caregivers. In terms of research on the return on investment of respite services, qualitative, anecdotal, and limited research data suggest that respite services are valuable and valued, but the available research is extremely limited and minimal. This research report provides an overview of the information that is available, and, importantly, information about how additional research and data collection could fill this gap in research and understanding of the value of respite services. Should the Task Force make a recommendation to the legislature to conduct a study, HMACS can provide information to help estimate costs of such a study. Research conducted on public awareness and marketing campaigns is provided, including estimates of costs for conducting limited, moderate and large-scale campaigns. Research on training and cultural competence uncovered best practices from other states. Should the Task Force make a recommendation to the legislature in these areas, HMACS can provide information about costs that other states have incurred to implement their programs.
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APPENDIX A: COLORADO MEDICAID WAIVER LIMITATIONS ON RESPITE CARE Waiver Type
Limitation
Description of Limitation
Location
Respite Care may be provided in a Class I nursing facility, an alternative care facility or by an employee of a certified personal care agency in the clients home.
Time Period
An individual client shall be authorized for no more than thirty (30) days of respite care in each calendar year.
HCBS Waiver for Persons with Brain Injury
Personal care respite is provided for caregivers, as long as the respite care does not duplicate any care which the primary caregiver may be receiving payment to provide. Service When personal care services are used to provide respite for unpaid primary caregivers, the exact services rendered must be specified in the documentation.
HCBS Waiver for Persons who are Elderly, Blind, and Disabled
Location
Respite Care may be provided in a Class I nursing facility, an alternative care facility or by an employee of a certified personal care agency in the clients home.
Time Period
An individual client shall be authorized for no more than thirty (30) days of respite care in each calendar year. Personal care respite is provided for caregivers, as long as the respite care does not duplicate any care which the primary caregiver may be receiving payment to provide.
Service When personal care services are used to provide respite for unpaid primary caregivers, the exact services rendered must be specified in the documentation.
HCBS Waiver for Community Mental Health Supports
Location
Respite Care may be provided in a Class I nursing facility, an alternative care facility or by an employee of a certified personal care agency in the clients home.
Time Period
An individual client shall be authorized for no more than thirty (30) days of respite care in each calendar year.
Service
Personal care respite is provided for caregivers, as long as the respite care does not duplicate any care which the primary caregiver may be receiving payment to provide. 97
Waiver Type
Limitation
Description of Limitation
When personal care services are used to provide respite for unpaid primary caregivers, the exact services rendered must be specified in the documentation.
HCBS Waiver for Children with Life Limiting Illness
Supported Living Services Waiver
Location
Respite Care may be provided in a Class I nursing facility, an alternative care facility or by an employee of a certified personal care agency in the clients home.
Time Period
An individual client shall be authorized for no more than thirty (30) days of respite care in each calendar year.
Provider Type
Skilled versus unskilled care are dependent upon the needs of the client and the physician's order. Skilled Respite care must be provided by an RN, LPN or CNA.
Location
Respite Care may be provided in a Class I nursing facility, an alternative care facility or by an employee of a certified personal care agency in the clients home.
Time Period
An individual client shall be authorized for no more than thirty (30) days of respite care in each calendar year.
Location
Respite Care may be provided in a Class I nursing facility, an alternative care facility or by an employee of a certified personal care agency in the clients home.
Time Period
An individual client shall be authorized for no more than thirty (30) days of respite care in each calendar year.
HCBS Waiver for Persons with Spinal Cord Injury
Personal care respite is provided for caregivers, as long as the respite care does not duplicate any care which the primary caregiver may be receiving payment to provide. Service When personal care services are used to provide respite for unpaid primary caregivers, the exact services rendered must be specified in the documentation.
Foster Care Children
Time Period
Cannot exceed seven (7) consecutive days per month or 28 days in a calendar year.
Location
Must occur in a certified foster home other than the foster 98
Waiver Type
Limitation
Description of Limitation child(ren)’s identified foster home
Waiver for Persons with Developmental Disabilities (HCBSDD)
Service
Day Habilitation: includes assistance with acquisition, retention or improvement in self-help, socialization and adaptive skills
Location
Day Habilitation: takes place in a non-residential setting, separate from the participant’s private residence or other residential living arrangement, except for the occasion of extreme medical and/or safety needs.
Time Period
4800 units available for Day Habilitation in combination with Prevocational Services 4800 units available for Day Habilitation in combination with Supported Employment Services Combination shall not exceed 7,112 units
Setting
Day Habilitation: may be provided in a group setting or may be provided to a single client in a learning environment to provide instruction when identified in the service plan.
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APPENDIX B: CAREGIVER INTERVIEW GUIDE Introduction The Colorado Department of Human Services, State Unit on Aging, has engaged HMA Community Strategies to assist with some research on respite services in Colorado, including what is available, where there may be gaps, and best practices related to providing support to people who are caregivers. What we mean by caregivers is someone who is caring for children or adults of any age with special needs who are unable to care for themselves. What we mean by “respite” is temporary relief for these caregivers. It can be a few hours provided on a one-time basis, or it could be overnight, or even a longer period of time. Respite can be provided at home — by a friend, other family member, volunteer or paid service — or in a care setting, such as adult day care or a residential facility. It can be planned in advance, or it could be something that is provided in a time of crisis. This research will help the State Unit on Aging and the Respite Care Task Force develop recommendations to the legislature around respite services, as part of their work on House Bill 15-1233. We are talking to caregivers around the State to ensure their voice is heard through these recommendations. Anything you say will not be attributed to you. We will report high level themes to the Respite Care Task. Questions Access to Respite Care: 1. Do you currently access respite care? Is it formal or informal, or combination? Do you (or does someone else, or Medicaid or insurance) pay for respite care? If so, how, private pay, Medicaid waivers, grant funds, etc? If the caregiver has access to respite care, ask the following questions: 2. How have you found respite care services? Through your own personal networks, or through something more formal, like an organization or Medicaid? If it is challenging, what would make it easier to find and get access to respite services? 3. When you think about how respite services have helped you, what do you think has been the impact of respite care on you and your family? 100
Prompt: Have there been any change in your or your family’s health since getting respite care? For example, have you been able to take care of yourself better? Get more sleep? Visit your doctors? Eat better? Exercise? Prompt: Have there been any changes in your social life with respite care? For example, have your relationships improved or strengthened? 4. What challenges do you experience with the respite care you are able to access? For example, is it hard to find qualified providers, is it hard to figure out how to pay for respite care, are there issues with respite providers understanding your loved one’s needs? 5. Have you ever accessed respite care in another state or part of Colorado? Were there any differences in respite care quality or availability in this other location? If the caregiver hasn’t received respite care/or insufficient respite care, ask the following questions: 6. What prevented you from being able to access respite care? 7. What type of respite care would be most beneficial to you? (i.e. scheduled in advance versus unplanned, overnight respite, multi-day respite, knowing how to find respite in a crisis) 8. How do you think respite care would help you and your family, including your loved one? Are there things that you think would be benefits immediately? Are there things that you think might be more long term benefits? (i.e. better sleep, improved health) (i.e. prevent institutionalization) 9. Have you ever been successful accessing respite care in the past, perhaps in another state or other part of Colorado? What made that time different? Were there any differences in respite care quality or availability in this other location? Awareness of Respite Care Resources 10. How do you learn about resources available to you, either as a caregiver or for other needs in your life? 11. How easy is it to find respite? Recommendations to Legislature 12. What do you think could be done to help improve access to qualified and reliable respite care? Impact of Respite Care 13. On a scale of 1 to 10, how would you rate the impact of the respite care on your own health and well-being as a caregiver? 101
Demographics of the Caregiver 14. Would you consider your community Rural or Urban? 15. What is the need or reason for respite care? 16. How old is the person you provide care for? 17. Is your loved one enrolled in a Medicaid waiver?
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APPENDIX C: ORGANIZATIONAL AND STATE INTERVIEW GUIDE FUNDING AND ROI 1)
How are respite care services funded in the state? (will be multiple ways) a. Do you feel this has been successful or are more funds needed? b. Does this include paying for informal respite care?
2)
How is the state exploring or demonstrating the value and benefits of respite care? a. What data (if any) is being collected on a state-wide level?
3)
Do you know of any studies or surveys we should include in our research? a. Studies comparing quality of respite care services across states? b. Studies comparing amount of respite care services across states?
CULTURAL COMPETENCE 4)
We are interested in learning more about disability competent care (e.g. providing respite care for caregivers who provide care to individuals with complicated or special behavioral or physical challenges) - how is your state/organization addressing this issue? a. How are you evaluating the effectiveness of strategies to improve competency in this area?
TRAINING 5)
How are respite care providers trained in your state? a. Are there standards or core standards that inform these trainings? Or are these as needed? b. Is there a credentialing or certification process for respite care providers?
AWARENESS/MARKETING 6)
7)
Can you briefly describe the structure and strategy of efforts to publicize or “market” respite services in your state or by your organization? a. Are there any elements you consider a weakness or strength? b. Do you target doctors and providers with marketing efforts, in addition to caregivers? Can you describe the overall budget for your state’s (or your organization’s) marketing efforts? a. Based on your experience operating marketing efforts at this capacity, do you have a sense of an ideal level of operation for marketing efforts, what additional budget would it take to get there and how would those funds be spent? 103
INFORMAL CARE 8)
Are you aware of systems in place to assist people with locating informal respite a. PROMPT: We have been defining informal respite as use of respite through one’s own personal networks (family, friends, neighbors) b. How do you define informal respite?
ACCESS TO RESPITE 9)
How has your state / organization worked to minimize barriers to people seeking to access respite care services? a. Prompt: Barriers include internal feelings of inadequacy as a caregiver; location/ availability of respite care services; paying for respite care; awareness of respite, etc.
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APPENDIX D: INTERVIEWEES Colorado
Name Tina Wells Val Saiz Elaine Wood Karen Colasacco, Marty Kennedy, Celeste Ewert Tim Cortez Sharon Church Cordelia (Corry) Robinson Lori Ramos-Lemasters, Cec Ortiz, Tony Tapia Sharon O’Hara Ryan Zeiger Other States Name Sarah Beth McLellan Carol Barnett Nancy Ranalli Gina Ervay Sharon Johnson Alicia Blater Cindy Miles
Angi Lee Jim Schroeder Jennifer Abernathy Joe Simpson, Jamie Kennedy
Organization Alzheimer's Association Colorado Chapter Colorado Respite Coalition Community Options Envision HCPF Inspiration Field JFK Partners Latino Age Wave MS Society / Chronic Care Collaborative PASCO
State and Organization Association of Maternal & Child Health Programs (AMCHP) Standards for Systems of Care for Children and Youth with Special Health Care Needs Delaware Department of Health and Social Services Delaware Lifespan Respite Care Information Network / Delaware Caregiver Coalition Kansas Lifespan Respite Coalition Nebraska DHHS Respite Care North Carolina Department of Health and Human Services Division of Aging and Adult Services North Carolina Respite Care Coalition Ohio Respite Coalition Respite Care Association of Wisconsin Tennessee Respite Coalition Wyoming Developmental Disability Division
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