THE NOGGIN Vol. 1 Issue 4

September 2015

Brain Injury Alliance of Arizona Newsletter

Get to know the ADA More than wheelchair ramps and building access, the law turns 25 this year The Americans with Disabilities Act, the civil rights legislation that guarantees people with disabilities equal access to housing, employment and education, is 25 years old this year. First signed into law July 26, 1990, the ADA, as it is commonly called, has since helped millions of people improve their quality of life. Contrary to popular belief, however, there’s more the law than building codes.

In this Issue 

Michele Stokes: What the ADA means to me

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The Gavel: What the ADA is and isn’t legally

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ADA Matters: Protecting the rights of parents with disabilities Rehab Ready: Mary-Louise Mulcahy helps with long-term care planning Kelly Darmofal on the educational system’s unpreparedness for TBI students

Over the last quarter The American with Disabilities Act was the culmination of a series of protests by century, the Americans with disabilities . ADA has evolved to encompass invisible disabilities such as cognitive disabilities, and that’s worth celebrating. You don’t have to be a person with a disability to show your support, either. Here are four ways everyone can celebrate this civil rights victory. Educate yourself. The ADA is a huge, complex field of law, so much so that many attorneys specialize in it. A law degree isn’t necessary to understand the basics, however. The ADA website gives an overview of the key points of the law. There’s also a Frequently Asked Questions page searchable by organization, region and topic. Get committed to the ADA. As par t of its anniver sar y celebr ation, the ADA has begun a pledge campaign during which individuals can commit to the ADA. Their goal is to get 25,000 signatures on the pledge petition. Organizations and public entities can pledge their re-commitment here. Share your story. The ADA Legacy pr ojects invites the next gener ation of ADA advocates and beneficiaries to share their stories of how the legislation has impacted their life, how they are educating the public about the ADA and how they raise awareness. Connect to the national network. The ADA National Networ k provides accurate information to various organizations and entities, including training and access to an ADA information specialist. If you want to ensure compliance, train staff in ADA practices or just become more familiar with the law’s practical application, chances are the national network can help.

The Brain Injury Alliance of Arizona (BIAAZ) is a nonprofit organization dedicated to preventing brain injuries and to improving the lives of individuals with brain injuries through prevention, education, information, and community support. 1

From Executive Director Carrie Collins-Fadell Dear Friends, This month’s edition of The Noggin is a very special celebration of the 25th Anniversary of the Americans with Disabilities Act (ADA). We are thrilled to have several stellar contributing authors this month, including Michele Stokes, ADA Compliance Director for the City of Tempe. Michele explains that the ADA is about so much more than building codes, it is about relationships. In recognition of this important anniversary, our BIAAZ Professionals Network hosted an ADA information session with Krista Watson from the U.S. Equal Employment Opportunity Commission, or EEOC. The EEOC enforces the ADA as it applies to employment. Krista answered a host of questions from our BIAAZ network ranging from what constitutes an appropriate question to ask in an interview to when an individual with a brain injury should ask for accommodation for a disability at work. She gave us a great overview of the modern day landscape of the ADA. This month in Tucson, BIAAZ is having an open house at Mobility Fitness Institute on Saturday, September 19th from 10 a.m.-2p.m. It is a chance for brain injury survivors, their families, and caregivers to learn about fun, adaptive exercises that they can do at home or in the gym. The Mobility Fitness Institute Staff will be on hand for one-on-one consultations and demonstrations. The event is free and open to the public. Whether you are a professional, a caregiver, or a survivor, I hope you will stop by and say hello. A program at noon will detail how to use the BIAAZ yourself or refer clients to us. While people may become members of the brain injury community through a variety of ways, stroke, accident, brain tumor, there are shared barriers to exercise and fitness that we want to help people overcome. New this month, you will see a flyer for 2016 membership in this edition. As the only non -profit in Arizona providing life-long resource facilitation to brain injury survivors, our team is always ready to help some of the 50,000 Arizona residents who will seek medical treatment for a brain injury this year. I hope we have earned your trust and confidence. Your support of BIAAZ through a donation or a membership will help us continue our valuable work of providing survivors and their caregiving team with the connections and support that they need for every step of their journey after a brain injury. 2

What the ADA means to me

After Michele Stokes went on a rafting trip down the Colorado River, her entire perspective on the ADA changed. The law stopped being about building codes and became about building relationships. Photo courtesy of Daring Adventures.

Michele Stokes, an Americans with Disabilities Act Compliance Specialist with the City of Tempe, believes the ADA isn’t just about wheelchair ramps or hand rails, it’s about relationships and inclusion. Compliance with the landmark civil rights legislation means not only breaking down common physical barriers people with disabilities face in the world around them, but also chipping away at social barriers between everyone, disabled or not. Recently, at a gala celebrating the landmark legislation’s 25th anniversary, Michele gave a short talk about the three things the ADA means to her. She generously took time to expand on the three-minute speech with The Noggin. “The ADA facilitates an appreciation of people and relationships.” “I get to interact with people who have the whole range of abilities and a whole range of areas that their abilities and disabilities affect,” Michele said. Just as not all disabilities are the same, there isn’t a one-size-fits-all way to achieve accessibility. That’s why Michele approaches accessibility issues not by looking at a person’s disability, but by getting to know the person themself and how they interact with their environment. “I get requests for accommodations, but what it really boils down to is the relationships,” Michele said. “Because until I build a relationship with them, I can’t walk in their shoes, I can’t necessarily understand their world and what they need to be independent. And many, many, many people with disabilities live in a world that is not that inclusive.” For a person with disabilities, necessary everyday tasks, such as going to the grocery store, doing errands or even finding suitable housing “can be fraught with barriers,” Michele said. “You can’t come up with solutions without the individual,” Michele said. “And every single individual has different expectations, different needs and requires different things that help.” “A fierce determination to continue this work.” Michele is the first to admit her job can be challenging. “It’s not easy, and if I didn’t have a passion for it I would’ve given up years ago,” she said. Michele began her career as an ADA coordinator for the City of Phoenix in 1990. After 10 years, however, Continued on page 7... 3

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Teaching and TBI: Kelly Darmofal on the ‘culture shock’ of returning to school post-TBI, her book and how she achieves her goals Kelly Darmofal sustained a Traumatic Brain Injury in 1992 in a car crash. When she returned to school as a TBI survivor, she found educators and the school system woefully unprepared to teach TBI survivors. The inability of the educational system to successfully accommodate students with head injury became an ongoing theme in both her writing and her academic and professional careers. Tell me about yourself. I was born in WinstonSalem, North Carolina, where I still reside, although I have lived for brief periods in Wilmington and Chapel Hill, North Carolina. I have attended both public and private schools, and my favorite hobbies once were art and equestrian activities; I loved being a soccer player and I once played basketball on an all boys’ team. In high school, prior to my TBI, I was a dancer and junior varsity cheerleader. Friends called me a tomboy, as I hated to be indoors; the beach is always my favorite locale. I am a sunshine girl who would love life in Arizona! On September 17, 1992, I was critically injured in a car crash following a football game. I was in a coma approximately three weeks and then spent weeks in in-patient rehabilitation in Charlotte. I suffered trauma to my right frontal lobe, left occipital lobe, and brain stem. Then followed many months of outpatient rehab and a few subsequent surgeries on my eyes and mouth. I returned to school full time in 1993 – and endured quite a culture shock. None of my teachers or administrators had any significant experience with traumatic brain injury or TBI; the classification was new under the Individuals with Disabilities Education Act or IDEA in 1990. I set a startling precedent at my public high school, where no one knew quite what to do with me. High school was beyond difficult as I struggled not only to reestablish friendships and acquire needed modifications, but also to simply find my classrooms and remember how to dress in clothes that matched. I had expressive and receptive aphasia, double vision, and bilateral hand impairment; I switched from being right-handed to being left-handed. Despite a high IQ, I suffered some true discrimination in an unprepared educational environment. Later as I applied to colleges, I found that no admissions counselors had knowledge of TBI. I attended Salem College largely because one teacher had worked with TBI survivors. Again I struggled to make A’s in a world with few trained teachers; I remained an enigma to faculty and advisors – although I found more friends and empathy at Salem; I graduated Cum Laude in Communication. When did you decide to write a memoir, and did anything surprise you while writing it? My idea for a book began at Salem College in a graduate program in special education. I was given a fairly simple assignment…I thought. “Please pick a problem in American education,” said the professor, “and do a comparison of studies on the subject.” “Whooppee, I thought…I know a lot about TBI…” So I picked that as a topic knowing TBI is one of 14 legal classifications under the Americans with Disabilities Education Act. Continued on page 9…

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Save the Date! Bowl for Brain Injury 2016 is coming in March!

Grab your favorite purple pair of bowling shoes and get ready to hit the lanes! Bowl for Brain Injury, the Brain Injury Alliance of Arizona’s signature annual fundraiser, will be taking place in Phoenix and Tucson during Brain injury Awareness month!

Phoenix: March 5, 2016 and Tucson: March 12, 2016 Keep an eye on your inbox and on social media for more information!

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she needed a break. So Michele, who has had profound 75 percent hearing loss ever since the age of three, went on a rafting trip down the Colorado River with Daring Adventures. The trip was a revelation. “It totally changed my focus, and my career,” Michele said. The group of about 25 passengers, who had a range of abilities and disabilities, often worked together while on a river, on sand, in rafts, and in other non-traditional situations throughout the trip. Michele, who reads lips to communicate, initially needed an oral interpreter to help her converse with the other passengers, including a fellow passenger with cerebral palsy. “We had wonderful conversations, and I was able to get to know him,” Michele said. “But without an oral interpreter, I wouldn’t have been able to do that.” Within a few days of acclimating to his speech patterns, however, Michelle was able to speak with the man on her own. But that wasn’t what impacted her most about the trip. What struck Michele was how everyone was included in every activity. “Where ADA is the letter of the law, [that trip] showed inclusion,” Michele said. “That’s what that whole trip was about. Being included in a way that wasn’t artificial, being included in a way that was seamless, totally changed my interaction with that group.”

“Before it

was about ADA compliance... After the trip, it really was about relationships. Because where ADA focuses on the environment, inclusion focuses on the person.” Michele Stokes, ADA compliance specialist for the City of Tempe , on how a rafting trip down the Colorado River changed her perspective and, ultimately, her career

Michele left the trip determined to make inclusion a cornerstone of her work. “Before it was about ADA compliance,” Michele said. “After the trip, it really was about relationships. Because where ADA focuses on the environment, inclusion focuses on the person.” Michele acknowledges that many people find themselves unsure about how to approach a person with disabilities. For those who don’t interact with people who have disabilities regularly, it can be a bit intimidating to interact with, say, a blind person, especially when one simply isn’t aware of the proper etiquette. “There’s a natural hesitancy to interact with people that are not like you,” Michele said. Inclusion, she said, is about going past physical and environmental barriers to get past those kinds of social barriers.

“The best way I know to break that down, and I’ve seen it in practice, is doing something together with another, that is outside of both their comfort zones.” Michele applied this outlook in the real world through an employment program called the Clear Path Job Training Program. It paired qualified applicants with severe disabilities with employers for an 18-week-long paid internship. The first meeting between the mentor and the intern always included a recreational activity, like bowling, bocce ball, or even kayaking down the Salt River. Participants also engaged in ice breaker activities that helped them get to know each other. The outings built a relationship that allowed both participants to be immediately comfortable with each other on the first day the intern showed up for work because, by then, they had already gotten Continued on page 10... 7

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And then my teacher said “NO analysis of TBI…why don’t you review studies about peer tutoring instead?” Well, I’m not famous for keeping my mouth shut… “Why not TBI?” I asked. “Well, medical schools have plenty of TBI studies,’ he said…”but in education there are simply no studies for you to compare. OK, I was really really mad. Eventually I compared studies on the merits of peer tutoring. But that night I stayed up all night and wrote about my own disability, TBI. “Our Teachers are Not Prepared,” I wrote…and I also turned in my TBI paper. I submitted this essay to English Journal, and was surprised it was published…and later won a major award. [Bouldin, K. V. (Mar 2005).“TBI: Our teachers are not prepared.” English Journal, 94 (4), 52.] “I had something unique and frightening to say to The acceptance of this article me realize I had American education… something unique and frightening to say to Americollege and universities can education…college and universities were not were not and still are not and still are not introducing potential teachers to introducing potential the needs of students with TBI…like me…and 23 teachers to the needs of years have now passed since my near-fatal accistudents with TBI…like me… dent. and 23 years have now passed since my near-fatal This article and other graduate papers on TBI led accident.“ to the memoir and my relationship with Modern History Press in Ann Arbor, Michigan. I am now ~ Kelly Darmofal, author of Lost in My married – I am now Kelly B. Darmofal – and I Mind: Recovering from TBI have a 3-year-old son named Alex. After a 6-plusyears teaching career in special education, I became a “stay at home mom” with the time to work on Lost in My Mind: Recovering from TBI. I dis covered, to my surprise, that TBI remains the leading cause of death for children in the U.S. and the leading cause of disability for young Americans (Schroeter et al., 2010; Keyser-Marcus et al., 2002). And naturally I thought about my son and the perils TBI represents for him. ANOTHER SURPRISE: I began reading over my mother’s journals and my old medical files. I had no recall of most events my mother Carolyn described, and many were worthy of inclusion in a memoir – the caretaker’s role is key to the recovery of TBI survivors. I was also shocked to learn how many people had participated in my recovery, and I wanted to pay homage to them. What do you hope people will get out of your book? One central message of my memoir is that undergraduate colleges and universities must begin training teachers in all fields, to work with students symptomatic of TBI – to learn to recognize them (diagnostic teaching) and to learn how to help them heal. TBI is the true “healing” category under IDEA and the most neglected. TBI is a silent illness as survivors rarely appear to be disabled. Statistics on schools and TBI are erroneous; underidentification is rampant. Supposedly about 25,000 students are now receiving help via TBI classification, but the BIAA’s recent “State of the States” suggests that up to 7 million students need help. Also, those classified TBI may not have special education teachers with specific training re: TBI. Susan Connors, President/CEO of the BIAA told me last year that her organization had Continued on page 11..

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to know each other in a non-work environment. The strategy was a huge success. The program had an 80 percent job placement rate. “The excitement of getting to know people.” Michele has had the opportunity to interact with hundreds of people on every part of the disability spectrum, and she relishes those opportunities. “Every person I get to know, to learn how the world works for them, makes my understanding grow,” Michele said. All of the interactions have helped her break down barriers, not just for the person with a disability, but for everyone. Michele Stokes, ADA compliance specialist for the City of Tempe

“We all need help, we all need encouragement, we all need to know somebody cares,” Michele said. “But you can’t legislate caring. You can’t legislate making people be friendly.”

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Continued from page 9... trained only 266 teachers in the entire nation – there is a “black hole” in American education that is TBI! *** The other primary message of my memoir is HOPE! My parents were told I would die, and then that I might never return to school, and certainly not to college. Today I have a wonderful life with a family and masters in special education, and a few disabilities that others often overlook. If I had given up, if others had expected me to live a disabled life, I would never have persevered. Hope is my message – never give up! ( I also hope the many life “tips” in my memoir will be of use to others like me.) Where can we find your book? My book is available in paperback, hardcover, and ereader on Amazon.com and Barnes and Noble online. What have you learned that others should know? I have already told you that TBI is the leading cause of child death in America, and that millions of TBI victims need help with only a few thousand receiving educational support. Otherwise I have learned a myriad of things: for instance, few drivers carry enough insurance to protect themselves from under and uninsured motorists. Two hundred dollars yearly can provide about a million dollars in vital coverage. Car crashes and falls are leading cause of TBI. I have learned, surprisingly, that males are more tolerant of handicaps than females – read my memoir to find out more about this phenomenon! Sadly, I have learned that the suicide rate for TBI survivors is high, and our schools must help address this growing problem, which affects students as well as athletes and veterans. I have learned that a sense of humor is the one vital defense mechanism for those in crisis! What are some of your other hobbies, charity work or interests? I became involved in canine rescue in 1993 because my disabilities deprived me of sports and lifelong interests. Today I rescue dogs and have two wonderful ones of my own. I speak publicly on TBI, and write for periodicals on TBI and other subjects. I can write at my own speed, while other activities require a rapid pace I cannot maintain. I tutor children with TBI and other disabilities. I love spectator sports and rock music concerts. I’m also a computer aficionado. Anything to add? Yes, and I’m so happy to announce that in January 2016 I will teach “TBI: An Overview for Educators” at Salem College, NC. This experimental landmark course will hopefully spread to other undergraduate programs across America. I realize some schools (as George Washington U.) offer graduate classes re: TBI – BUT ALL TEACHERS NEED AT LEAST A BRIEF OVERVIEW OF TBI….because as I wrote in English Journal, “We are not coming…we (those with TBI) are here!” ** As to when I became part of the brain injury community, you might say this began on 9/17/92. However, I have been bona fide member of the BIANC for several years only – I was too busy to advocacy until I could exchange full for part-time work. I take a bit more time than I once did to accomplish my goals…but I get there! *** [ See: Gordon, W. A., Oswald, J. M., Vaughn, S. L., Connors, S. H., & Brown, M. (2013). State of the states: Meeting the educational needs of children with traumatic brain injury. BIAA.] 11

THE GAVEL BRAIN INJURY SURVIVOR LEGAL ISSUES

The ADA: What the law says By Brenda Hamilton Brenda Hamilton is a personal injury and wrongful death paralegal with more than 35 years experience who works for Warnock, MacKinlay & Carman in their Scottsdale office. Her interest in TBIs was piqued when she had an immediate family member who sustained a “mild TBI” and had to battle with worker’s compensation and automobile insurers to establish the seriousness of injuries that caused 100% disability. She works closely with the catastrophic injury team at WMC to assist families with TBI issues and is well-versed in helping attorneys and insurers understand the seriousness and long-term consequences of a mild TBI. What Protections are Provided by the ADA for the Brain Injury Survivor? The Americans with Disabilities Act (“ADA”) is a wide-ranging civil rights law that prohibits discrimination based on disability. The protections it provides for Americans with disabilities are similar to those provided to other groups through the Civil Rights Act of 1964, which made discrimination based on race, religion, sex, national origin, and other specified characteristics illegal. The ADA went a step further. It requires covered employers to provide “reasonable accommodations” to employees with disabilities. It also imposed accessibility requirements on public accommodations. The ADA applies nearly every facet of daily life, including employment, transportation, public accommodations, communication assistance, and all governmental activities. The legislation also establishes requirements for telecommunications relay services, which allow people with difficulty speaking or hearing to use the phone. This article will explore the ADA in several key areas. With a better understanding of the ADA, it can be applied to the disabilities associated with traumatic brain injuries (“TBI”). What does the ADA do and how does the ADA define a covered disability? The ADA’s broadly stated purpose is to prohibit discrimination based on disability. There is a specific legal definition of a covered disability under the ADA and the ADA Amendments Act of 2008 (ADAAA). The definition of disability currently includes physical or mental impairment that substantially limits one or more major life activities, a history of having such an impairment, or being

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regarded as having such an impairment. The ADAAA also added examples of “major life activities” that include caring for oneself, performing manual tasks, seeing, hearing, eating, sleeping, walking, standing, lifting, bending, speaking, breathing, learning, reading, concentrating, thinking, communicating, and working. Is it the same as Social Security disability?

ADA RESOURCES 

The United States Department of Labor provides technical assistance on the basic requirements of the ADA, but does not enforce any part of the law. Visit www.dol.gov for extensive publications on a wide variety of topics related to the ADA.

This ADA disability definition  The Equal Employment Opportunity Commission (EEOC) enforces regulations covering differs significantly from that of employment. Eeoc.gov the Social Security Administration (“SSA”). SSA laws define  The Department of Transportation enforces regulations governing transit. disability as the inability to engage in any substantial gainful  The Federal Communications Commission (FCC) enforces regulations covering telecommunications activity by reason of any mediservices. FCC.gov cally determinable physical or mental impairment(s) which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months. Effectively, you must be unable to do any job at all. It takes a far more debilitating disability to qualify for SSA’s disability than is required for the protections of ADA. Which employers are subject to the ADA and what are those “covered employers” mandated to do? Persons with TBI disabilities are protected by the ADA in multiple areas, including employment. They must meet the definitional requirement of an impairment that substantially limits one or more major life activities. While physical disabilities that can result from TBI are more apparent, such as the need for a wheelchair, speech impairment, hearing or sight loss, often the more difficult-to-identify mental and emotional TBI symptoms fit squarely within the definition that grants ADA protections. The ADA applies to all employers with more than fifteen employees. These are “covered employers” mandated to provide “reasonable accommodations” to help any employee with a disability achieve vocational success. Job accommodations may include adjustment or modification of the job, the work place, or the manner of performing a job, that enable a person with disabilities to perform the essential job functions, increase productivity, or be independent in completing tasks. For TBI survivors whose disabilities are often mentally- or

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A M E R I C AN S W IT H D IS AB IL IT IE S A C T

ADA Matters By Milchele Stokes, ADA compliance specialist for the City of Tempe

Michele Stokes, deaf/oral/lip reader, is currently the ADA Compliance Specialist for the City of Tempe. She has been in the accessibility field for over 25 years. She also serves as the CEO for Behold Charities International, a new non-profit, whose mission is to facilitate universal design in accessible affordable housing. She also a brother who has had a traumatic brain injury since age five. Michele is married to Bill Stokes; has four adult children, 11 grandchildren, one great grandson, three dogs, five cats, and a dozen fish. She reports there might be a gecko or two in the house, as well.

Parents and prospective parents with disabilities: What are their rights? “The desire to become a parent traverses all cultural, physical, and political boundaries. However, for people with disabilities—including intellectual and developmental, psychiatric, sensory, and physical disabilities—this innate desire has long been forestalled by societal bias. Today, people with disabilities continue to encounter significant legal, medical, and familial resistance to their decision to become parents.” -- Carl H. Coleman, “Conceiving Harm: Disability Discrimination in Assisted Reproductive Technologies.

Protecting the Rights of Parents and Prospective Parents with Disabilities is guidance available to assist child welfare agencies, child protection agencies, foster systems, adoption agencies, and courts. It also contains current information on parental disability rights in child custody, welfare, adoption, and protection situations. The guidance provides answers, examples, complaint process information, references and resources. Section 504 of the Rehabilitation Act of 1973 (Section 504) and Title II of the Americans with disabilities Act (ADA) protect parents and prospective parents with disabilities from discrimination in programs, activities and services. Section 504 provides that individuals with disabilities shall, by reason of the disability, not be excluded from participation nor be denied the benefits of services, programs or activities that receive federal financial assistance. Under Section 504, a state or city could be liable for discriminatory actions of a private foster care or adoption agency with which it contracts. Example: If a private foster care agency, contracted by the state, imposed screening or eligibility requirements for prospective parents with brain injuries or other disabilities such as HIV, the Continued on page 19... 14

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Continued from page 12... emotionally-based, reasonable accommodations could creatively include, by way of example but without limitation:  Providing an extra notebook or calendar to write down important information to com-

pensate for memory deficits.  Providing noise-cancelling headphones if the disability relates to distractibility or diffi-

culty with concentration.  Changing the method of communication, i.e., verbal versus written, to accommodate a

deficit in one area.  If post-TBI fatigue is disabling, providing five-minute breaks six times daily instead of

two fifteen-minute breaks, allowing for rest and recovery, or permitting shorter work days transitioning to full time as stamina is increased, may be reasonable accommodations.  Seizures are common post-TBI, and the accommodation may be as simple as a special

chair or safety strap to prevent falls while seated at the workplace, and training of two coworkers in seizure response techniques.  When the TBI disability is inappropriate anger or lack of control in expression of excess

negative emotion, accommodations could limit interaction with others or train coworkers to recognize the issue and respond appropriately. Care must be taken to balance the privacy of medical information with the need for accommodation. The disabled person must allow his information to be sufficiently disclosed for the employer, and coworkers involved in implementing the adaptations, to be aware of the need in order to provide the reasonable accommodation. Government employers or those with government contracts have more stringent requirements, and may have affirmative action goals that mandate hiring of persons with disabilities. These can be excellent resources as they have to meet their goals to stay in compliance to retain the business, and may be willing to make more accommodations to do so. Although much progress has been made through the ADA and subsequent amendments that broadened its scope, employers continue as regular victors in lawsuits seeking enforcement against discriminatory practices. The threshold for the employer to escape responsibility is relatively low: the employer has to show only that the job cannot be done by the candidate with the disability; cannot be done as well as a non-disabled applicant; or that reasonable accommodations are not available or are too costly. However, with more veterans returning from service with TBIs, there is a wave of increased awareness of TBI symptoms and a desire to assist men and women thus impacted. It is a joy to see many employers actively seeking to employ those survivors who are grateful for the opportunity and thus likely to be their most loyal long-term employees. Need support? BIAAZ facilitates several survivor and caregiver support groups that meet monthly throughout the Valley. Check out our Facebook page at www.facebook.com/BrainInjuryAllianceAZ for more information. Or, ask to subscribe to our e-Blasts by emailing [email protected]. 16

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Rehab Ready Brain injury often introduces survivors and caregivers to a new array of health care providers who specialize in brain injury. Some specialties may be completely unknown to caregivers looking to find the right care for a survivor. The Brain Injury Alliance of Arizona offers referral services to help people navigate these sometimes overwhelming choices.

Mary-Louise Mulcahy, RN case manager Mary-Louise Mulcahy, a registered nurse certified in both case management and life care planning, helps the survivors of catastrophic injuries keep the long-term view in mind. Mary-Louise Mulcahy, RN, certified case manager and life-care planner

When she is called immediately after a catastrophic accident, MaryLouise assess the situation and ensures the patient is seeing the correct health care providers for their needs. “I make sure we have the providers on the team,” Mary-Louise said. “I get all the players in place.”

Mary-Louise accompanies the patient to doctor appointments, advocates for the patient and helps family members or caregivers understand the multitude of procedures or therapies being implemented. Her training as a nurse allows her to go one step further, however, in that she is able to prove the medical necessity of a treatment, therapy or accommodation if a situation calls for it.

Another way Mary-Louise differs from many certified case managers is that she also a certified life care planner. This means she looks beyond the immediate recovery phase and helps survivors put a long-term plan in place. First, she assess what the patient needs that will improve their quality of life and allow them to return, as much as possible, to the way their life was prior to the injury. This can include anything from physical accommodation to medication or therapeutic treatment. “You’re putting together a treatment plan for this person for the rest of their life,” Mary said. The assessment estimates just how much future or ongoing medical services and living expenses will cost the survivor, based on “the true cost,” as Mary-Louise puts it. That amount may be different from what insurance or other programs are actually willing to pay. Both life care assessments and case management may include analyzing whether the survivor’s home is suitable for the survivor’s mobility level. Mary-Louise helps determine what changes or renovations a home may need to become more accessible, such as installing lower counters in the kitchen or wheelchair accessible showers. Sometimes, a survivor may have to live in another home. Mary-Louise also helps establish a Medicare set-aside programs if a survivor qualifies. These programs basically withhold a portion of a qualifying survivor’s Medicare to be used for medical expenses should the survivor run out of money from a workman’s comp settlement or other fund. Continued on page 21... 18

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agency would most likely be liable for the contractors’ practice of disability discrimination. A person with a disability may not be denied benefits of services, programs, or activities or subjected to discrimination because of their disability. This includes investigations; assessments; in-home services; removal of children from their homes; case management and service planning; visitation; guardianship; adoption; foster care and reunification services. The protection extends to custody hearings and proceedings to terminate parental rights. While child welfare agencies, foster systems and courts have the responsibility to protect children from abuse and neglect, their services must be provided in a non-discriminatory manner.

The guidance is in response to a 2012 National Council on Disability (NCD) report. Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children said parents with disabilities are overly, and often inappropriately, referred to child welfare services, and once involved, are permanently separated at disproportionately high rates. Parents with cognition disability were found to face discrimination based on stereotypes; a lack of individualized assessments, and failure to provide services. The agencies providing funding, guidance and technical assistance for many agencies and courts, received numerous complaints of discrimination in the child welfare system; and this joint technical assistance was created to address this discrimination.

Discriminatory separation of children results in long-term negative consequences. Example: in an investigation of a state agency, it was determined that the agency engaged in discrimination against a mother with a developmental disability as they did not provide supportive services following the removal of her two-day-old infant. Supports were made available to non-disabled parents but not to her. She was also denied reasonable modification to accommodate her disability. As a result, the family was separated for over two years; both the mother and child were deprived of maternal/child bonding. In another instance, an agency removed a newborn for 57 days from parents because of stereotypes about blindness, disrupting a crucial bonding period that can never be replaced. Another agency removed a three-year old from his grandmother because she had arthritis and a mobility disability. Result: the toddler developed behavioral issues and progressively detached from his grandmother, though he had had no such experiences before the separation.

Disability discrimination is not acceptable. Two fundamental ADA and Section 504 principles are: (1) individualized treatment; whereby individuals with disabilities are to be served on a case-by-case basis, not on the basis of generalizations or stereotypes; and (2) full and equal opportunity. Individuals with disabilities are to be provided opportunities to benefit from or participate in child welfare programs, services and activities that are equal to those extended to individuals without disabilities. Continued on page 21... 19

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Continued from page 18... This may include the provision of auxiliary aids to ensure communication; making reasonable modifications to policies, procedures or practices that don’t alter the program; provision of services different from those provided to others to ensure an equal opportunity to the same result or benefit, such as family reunification. Example: if an agency provides classes on feeding and bathing children and a mother with a brain injury needs a different method of instruction to learn the techniques, the agency must provide the method of teaching that she needs.

It does not mean lowering the standards. A potential parent with a disability may not be appropriate for child placement because they pose a significant risk to the health or safety of the child that cannot be eliminated by a reasonable modification. However, the decision about child’s safety and whether a significant risk to the health and safety of the child exists must be based on an individual assessment and objective facts, including the severity of the risk and the probability that potential injury to the child will actually occur. If the risk can be eliminated by reasonable modifications or provision of aids and services, the agency must consider it. For more information, go to www.ada.gov.

Continued from page 17... “It’s a life care plan, but it’s based on what Medicare can cover and treat,” Mary-Louise said. “If they run out of money, then Medicare would kick in and pick up the balance.” She also spends a lot of time educating survivors and caregivers about pre-existing conditions that may be impacted by a brain injury or vice versa, another skill that is part and parcel of her nurse’s training. For example, she is a certified diabetes educator, particularly useful since the disease is especially prevalent among the brain injured population. Mary-Louise loves how rewarding her work is. “I get to help people,” she said. “I would want somebody to help the people that I care about.” Although it’s ideal for Mary-Louise to be called as quickly as possible after a catastrophic event, it’s also never too late to call her. Even years after a brain injury, cognitive and rehabilitative therapy can still help, though it may take longer. Case managing and life care planning are both skills that are certified by passing a national test, so be sure when seeking someone out to fulfill these services they are properly accredited. Questions about a loved one who suffered brain injury? Do you believe you may be experiencing symptoms of brain injury? It’s never too late to call the Brain Injury Alliance of Arizona. (602) 508-8024

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Board of Directors President

Directors

Dr. Robert Djergaian Banner Good Samaritan Rehabilitation Institute

Kim Covington The Covington Companies, LLC

Past President Rebecca Armendariz Banner Health

Dr. Christina Kwasnica Valley Physical Medicine & Rehabilitation

Vice President

Ray Norris, Esq. Gallagher & Kennedy

Tom Nielsen Retired Executive

Sharon Phillips Freedom Manor

Secretary Dr. Alex Hishaw University of Arizona Medical Center Treasurer Sean Badding Everlasting Services

Matt Riegel The Northern Trust Company Amanda Wigal-Schlosser Brandables Kay Wing SWAN Rehab

Carrie Collins-Fadell Executive Director 22

WITH HEARTS FULL OF GRATITUDE, THE BRAIN INJURY ALLIANCE OF ARIZONA THANKS ITS SPONSORS FOR THEIR SUPPORT.

Diamond Sponsors

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WITH HEARTS FULL OF GRATITUDE, THE BRAIN INJURY ALLIANCE OF ARIZONA THANKS ITS SPONSORS FOR THEIR SUPPORT.

Silver Sponsor

Bronze Sponsors

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