Colorado Respite Care Task Force Meeting Summary—December 15, 2015 (Meeting held by conference call due to snow storm)

1. Participants Task Force members: Linda Ellegard Lynn Robinson Melanie Worley Michele Craig

Angela Woerner Brenda Heimbach Cynthia Hansford Kristi Uitich

Keri Mosinski Mindy Kemp Tina Wells

Task force staff: Lisa Carlson (facilitator) and Barbara Yondorf, Engaged Public Public: Tim Bergman and Colleen Becker, Chronic Care Collaborative; Val Saiz, Colorado Respite Coalition; Peggy Spaulding, Colorado Department of Human Services; Janis DeBaca, Hayley House; Lauren Snyder; Meghan Baskett, Easter Seals Colorado; Cassandra Keller, Department of Health Care Policy and Financing

2. Agenda Desired Outcomes • • •

Review, clarify and refine possible recommendations Review and clarify outline of final report Develop and agree on next steps

Proposed Agenda: 1:00 PM

Welcome, Agenda Review, Ground Rules and Introductions (Lisa Carlson/all) --Name, organization, any updates of interest to the Task Force?

1:10 PM

Review and Refine Recommendations -- Barbara Yondorf/Lisa Carlson/All

2:20 PM

Break

2:30 PM

Public Comment

2:40 PM

Review and Refine Recommendations Continued

3:35 PM

Public Comment

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3:45 PM

Next Steps th --Working Group January 4 , 12:30-4:15 pm --Report Outline

4:00 PM

Adjourn

3. Meeting Summary A. Welcome and Introductions Lisa Carlson, facilitator, welcomed the group and reviewed the agenda. B. Review and Refine Recommendations The Task Force reviewed the list of draft recommendations it had compiled through November 30, 2015, including refinements made to the list by a smaller work group that met on December 9, 2015. Highlights of the changes the Task Force made and important points raised by the group are listed below. Attached to this meeting summary is the revised list of recommendations that includes the decisions made at this meeting. •

Recommendation 1 concerning an outcomes assessment study--look at EBD as well as SLS populations. The Task Force discussed the reasons for looking at these two groups. The Department of Health Care Policy and Financing already collects some data on respite care utilization by these two waiver populations. Researchers can analyze the demographic characteristics and utilization of other health care services for those who do and don’t use respite care in the two programs. There are sufficient numbers of people in the two programs to conduct meaningful analyses. Comparison of investment can be made for two different categories of waiver recipients—adults with disabilities (SLS) and people who are elderly, blind and disabled (EBD). The Task Force considered including one of the children’s waiver programs in the study but concluded there were not enough children who use respite care in the programs to allow for indepth analysis.

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Strike Recommendation 1.b concerning additional funding for respite care services. The Task Force discussed whether it should seek additional funding for respite care at this time. It concluded that it would be good to first get the results of the outcomes assessment/return on investment study (see Recommendation 1). Concern was also expressed about the pressures on the stage budget this year when Tabor will dictate a taxpayer refund.

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Goal 3, Community Outreach—add employers and employees to the list of the audiences for the educational campaign.

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Recommendation 3.b—focus on community outreach, education and awareness, not marketing.

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Recommendation 4.b concerning a respite tax credit—add that the tax credit would be for fulltime caregivers and for out-of-pocket expenses of caregivers for respite care services.

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Add a new 4.c—recommend standardization of the full continuum of respite care provider options across all waiver programs.

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Add a new section called “Additional Discussion and Needs.” Topics to include: o Examine the possibility of adding respite crisis to the Mental Health Crisis Hotline (formerly Recommendation 1.c); o Encourage employers to support respite caregiver employees (formerly Recommendation 1.d); o Look into a variety of other possible funding sources; and o Conduct a study of respite care provider reimbursement rates versus provider costs.

Task Force members agreed that the following should be included in its report to the General Assembly: • • • • •

Add additional reasons for the gap between authorized and provided respite hours and dollars in the Medicaid HCBS waivers that Michele Craig noted. Include a full list of barriers to respite care services. Include a description of what the Mental Health Crisis line is. When discussing Recommendation 7 concerning streamlining regulatory requirements for overnight respite, talk about Hayley House and Easter Seals interest in the model and its use by Ryan House in Phoenix, Arizona. Have examples from real people about barriers, unmet demand, value of respite, etc.

4. Next Steps Barbara Yondorf will incorporate the Task Force’s changes to the list of recommendations (see attachment). A smaller work group will meet on January 4, 2016, to go over the draft report. Barbara will write a second draft of the report that will then be sent to the full Task Force. At its January 11, 2016, meeting, the Task Force will review, amend, finalize and ask for consensus to approve the final report. The final edits will be made and the report sent to the Department of Human Services for review before it is submitted to the General Assembly, no later than January 31, 2016.

5. Public comments Val Saiz, Colorado Respite Coalition, made several comments. Her comments concerned the need for HMA to specify the types of additional data that would be useful for the study in Recommendation 1; the importance of looking at the gap analysis; and the problem of caregivers not earning income and, as result, not contributing to Social Security and losing out on Social Security benefits. With respect to the last point, Ms. Saiz recommended examining whether the State could contribute to Social Security on behalf of full-time caregivers.

6. Adjournment The Task Force conference call was adjourned at 3:30 pm.

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Potential Task Force Recommendations as of December 16, 2015 1. Economic, Health and Social Value of Respite Care Goal: To demonstrate the benefits of respite care in Colorado, both in terms of needed relief for caregivers and net savings from avoiding more expensive medical care and other costs—a positive return on investment. The study should: i. Be piloted using existing programs; ii. Look at populations in the SLS and EBD waiver and study the differences between those who do and do not use respite services, including the impact on families; iii. Use data from the Department of Health Care Policy and Financing to pull information on Medicaid clients, matching acuity levels, need for support, etc.; iv. Show the impact of funds spent versus funds saved in health care; v. Use a consistent evaluation tool to assess the waiver programs and all Colorado respite programs; and vi. Include sufficient funding to identify data points the Colorado Respite Coalition can use to collect additional complementary data from families using respite services and improve evaluation for agencies to show the impact of respite on families, identify varied needs across populations and geographic areas, and demonstrate cost savings of respite care vs. institutionalization and hospitalization.

2. Training Goal: To ensure Colorado has a sufficient number of qualified providers to meet the demand for respite care services. Recommendation 2. The Task Force recommends that the General Assembly fund a comprehensive statewide training system for respite care providers that includes a standardized training format.1 The training system should: i. ii.

iii. iv. v. vi.

Have the following online: an inventory of all training opportunities for respite care provider in the state that is ongoing and updated; information for agencies and individuals to find out how to become respite providers; and training information; : Make a core training program for respite care available statewide that is based on a national model, uses a patient-centered approach, addresses core competencies and is evidencedbased. It should be developed with input from community colleges, technical schools and educational institutions offering four-year degrees to develop the program; Create additional training opportunities focused on providing services to individuals with higher levels of behavioral and medical issues to ensure providers are capable of providing care for these populations; Make training available for primary caregivers; Establish multi-tiered training depending on the level of care required; and Incorporate cultural competency, which can be achieved by:

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a) Using national proven practices to develop and implement training related to cultural competency that can be included in all training for respite care workers throughout Colorado; and b) Addressing cultural competency related not only to ethnicity but also to competencies for dealing with other issues such as people with complicated or special behavioral or physical challenges. [When discussing this recommendation, note that there is no central place that tracks all training opportunities and training is not consistent. Rural communities have the capacity to produce more respite care providers if training is made available. More trained respite care providers could address the shortage in rural areas and increase economic opportunity.] 3. Community Outreach Goal: To educate caregivers, patients, the medical community, public policy makers, employers, employees and the public generally about the existence and benefits of respite care services in Colorado; how to access them; and how respite services can help caregivers to continue to provide care without burning out. Recommendation 3.a. The Task Force recommends that the General Assembly fund the expansion of an existing website to serve as the designated website for information about respite care and as an access point for services throughout the state. The website should: i. ii. iii. iv. v. vi.

Make it easy for providers and others to link to it; Use search engine optimization to maximize the number of people who are searching for respite information on the Internet who would be directed to the website; Have respite information across the lifespan; Include a respite care provider locator that is comprehensive and regularly updated and includes geographic area-specific registries to identify local respite care providers-something that is particularly important in rural areas; Include training information (see Recommendation 2.a.i); and If the Colorado Respite Coalition’s website is used as the central Colorado website, allow for new design and search engine refinements.

Recommendation 3.b. The Task Force recommends that the General Assembly fund a centralized community outreach education and awareness program about respite care services in Colorado that would include start-up and sustainable long-term funding, paid staff and leveraging existing resources to support the design and dissemination of messaging and marketing materials.2 i. The marketing approach should use communication vehicles that research has shown are the most effective at reaching caregivers, including social media as a primary marketing tool and public awareness strategy. ii. Messaging and marketing materials should: a) Be simple, clear, and easy to understand;

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b) Reflect a broad range of Coloradans and various cultures, including urban/rural, different groups requiring respite services (e.g., adults caring for children), multi-cultural populations, etc.; c) Help individuals to identify as caregivers and take action; d) Be phrased in a way that caregivers can relate to; e) Focus on prevention and immediate assistance for caregivers on the edge as priorities; f) Get out the message that taking a break does not mean that you as a caregiver are failing or the situation is hopeless and that trusted, trained respite care providers are available to help; g) Foster a culture in Colorado of: If you break your arm, you go to the ER; if you are a caregiver in need of support, go to the Colorado Respite Care Website to find out about respite services in your area; and h) Take into account that different approaches may be needed for different audiences— what may work in urban areas may not be effective in rural areas, what is an effective way to reach younger people may not be the same for older people. Caregiving hits everyone and a campaign must be diverse in its approach. 4. Access to and Availability of Respite Care Goal: To ensure caregivers get the quality respite care they need, when they need it. Recommendation 4.a. The Task Force recommends that Community Centered Boards, Area Agencies on Aging and institutions of higher education, and Single Entry Point (SEP) agencies reach out to support programs and arrangements that focus not only on formal respite care but also on informal respite care provided by family members, friends and other nonprofessional respite care providers. This is a particular concern in rural areas where, for the most part, there is a shortage of formal caregivers. i. Examples of programs supporting informal caregiving include Discovery Club, Family Recess, and A Little Help. ii. Support should include: a) Funding to pay informal caregivers (e.g., stipends or expenses); b) Mentors to train informal caregivers and give them enough information to feel comfortable providing respite care, as well as encourage more people to do caregiving; and c) Credit for experience—flexibility based on needs.

Recommendation 4.b. In addition to state General Funds and Medicaid dollars currently used to fund some respite care services for designated populations, the Task Force recommends that the General Assembly consider a tax credit, up to an annual amount, for caregivers who are not currently eligible for subsidized respite care. Tax credits would be for fulltime caregivers and for out-of-pocket expenses of caregivers for respite care services. [When discussing this recommendation, also note the possibility of providing a tax credit for full-time caregiver contributions to Social Security.]

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Recommendation 4.c. The Task Force recommends that General Assembly allow for, and the Department of Health Care Policy and Financing work to, standardize all approved continuum of respite care provider options (e.g., in-home, day respite, short-term facility-based overnight respite, assisted living, skilled nursing facility, etc.) across Medicaid waiver programs, as appropriate. Recommendation 4.d. The Task Force recommends that the State streamline the regulatory requirements for facility-based short-term overnight respite care. [When discussing this recommendation note that currently different agencies (e.g., HCPF, DPHE and DHS) have different requirements. The requirements applied to facilitybased short-term, overnight respite are not specific to it and in many cases are unnecessarily burdensome and may discourage the establishment of facility-based shortterm overnight respite care. Examples of the kinds of model programs (such as Ryan’s House in Arizona) that are struggling in Colorado to meet regulatory requirements include the Easter Seals Respite Center in Lakewood and Hayley House, which will be established in the Denver metro area.] 5. Additional Discussion and Needs A. The Task Force recommends examining the possibility of working with the statewide Mental Health Crisis Hotline to provide crisis respite and follow-up respite services to avoid future crises that could lead to expensive hospital and emergency room care in the absence of such services. [Make these points in the report when discussing this recommendation: •

Certain populations are at particularly high risk for crisis respite care. They include people with high medical needs and those with serious behavioral issues or dementia. Respite care may reduce the need for expensive hospital and emergency room care and lessen serious impacts on other systems, including the mental health and criminal justice systems.

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While some agencies provide crisis respite care, families often don’t know it exists or how to access it.

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A crisis service already exists—the Colorado Mental Health Crisis Hotline. The Colorado Department of Human Services partners with Metro Crisis Services to operate the statewide hotline. The Task Force recommends examining the feasibility of including crisis respite as a part of the hotline services.]

B. The Task Force recommends exploring ways to encourage employers to fund, or include in their employer-provided health plans, respite services. One possibility might be a tax credit. Another might be to convene insurers and interested employers to explore inclusion of a respite care benefit in employer-sponsored plans. A few employer plans around the country cover respite care services. Respite Care Task Force

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C. The Task Force recommends looking into a variety of other possible funding sources that may merit further examination, including dedicated county mill levies; greater use of informal networks; working with employer organizations to encourage employers to include respite services in their wellness programs; and grants. D. The Task Force recommends conducting an analysis of costs versus reimbursement rates for respite services, especially for clients who are medically fragile or who have complex behavioral issues, for overnight respite, and for rural providers, including travel expenses.

________________________________ Endnotes 1

The following Task Force commentary will be included in the report: “Training needs to be more accessible and with improved quality of consistent content for professional providers. For some types of respite services and in some parts of Colorado, interviews with caregivers and professionals in the field indicate there are not enough providers. This issue must be addressed before a public awareness campaign, when families will be searching for services. As part of this, cultural competency should be a factor, as well as ensuring there are training opportunities to address the care needs of populations such as high behavioral needs and medically fragile individuals, as well as language and cultural barriers. More consistent components of training and skills related to caregiving is needed, something that would be recognized by families and agencies across the state to ensure quality of care and safety for families. This standardization of training will also hopefully increase awareness of career opportunities within the field, and help address the need for a growing number of providers statewide. This recommendation is vital to addressing respite needs, however, the case must first be made for the need for respite as well as the need for state involvement. Developing this training may easily go beyond January, and the task force timeline, however, by developing a pilot study as indicated in the Investment section, more data can be tracked to better show the need for respite and create stronger recommendations for the state.” 2

The following Task Force commentary will be included in the report: “The marketing/public awareness campaign should include tangible resources (websites, phone numbers) that make it very easy for caregivers to ask for help. Caregivers sometimes complain that they are passed along from agency to agency when what they want is to have one person they can call directly. “Caregiver” and “respite” often don’t resonate with families, so different language is needed to reach families that don’t self-identify as caregivers and don’t know what respite care is. Additionally there should be one website, phone number, etc. that agencies/providers statewide know for referrals.”

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