CASE STUDY SEPTEMBER 2018 Creating Better Systems of Care for Adults with Disabilities: Lessons for Policy and Practice Martha Hostetter Sarah Klein Consulting Writer and Editor Consulting Writer and Editor The Commonwealth Fund The Commonwealth Fund PROGRAM AT A GLANCE TOPLINES KEY FEATURES: Some health plans and clinics have created Proactive, comprehensive customized approaches for people with disabilities. These care for adults with disabilities programs share key features including ensuring accessible care, can help them avoid medical proactively identifying and treating secondary conditions, complications and improve their engaging and building trust with patients, and integrating long- quality of life. term services and supports to improve health and promote independence and social inclusion. Model care programs for adults with disabilities share a focus on TARGET POPULATIONS: Working-age adults living with physical prevention, trust-building, and disabilities, intellectual and developmental disabilities, or serious integrated supports and services mental illnesses. that promote independence and social inclusion. WHY IT’S IMPORTANT: Americans with disabilities often have difficulty finding physically accessible practices or providers with expertise in their conditions. Compared with other adults, they receive less preventive care and have a high incidence of potentially preventable medical conditions stemming from their disabilities. BENEFITS: Engaging patients in managing their conditions and offering them a variety of support services can help avoid medical This case study is available on the complications and improve quality of life. Commonwealth Fund’s website at: https://www.commonwealthfund.org/ CHALLENGES: Ensuring adequate funding. Programs that serve publications/case-study/2018/sep/ adults with disabilities often rely on private and public grants to systems-care-adults-disabilities. cover their costs. More closely managing medical and long-term services and supports for people with disabilities — as a growing number of states are doing through managed care — may lead to higher rather than lower spending, at least in the short term. Creating Better Systems of Care for Adults with Disabilities: Lessons for Policy and Practice 2 INTRODUCTION she noticed he tended to become agitated after meals As a young psychiatrist working in Ohio’s state psychiatric and when he lay down in bed. Gentile guessed he had hospital, Julie Gentile, M.D., found none of her training gastroesophageal reflux disease, something she later had prepared her to help a patient with a severe learned was common among people with intellectual and intellectual disability admitted because of aggressive, developmental disabilities and a possible contributor to possibly psychotic behavior. Because the patient was their higher prevalence of stomach cancer.1 When Gentile nonverbal, her usual diagnostic approach — taking a prescribed an acid blocker, his aggressive behavior went history and conducting a mental status exam — wasn’t away. “This experience really made me think we are effective, but Gentile wasn’t comfortable prescribing probably missing medical issues right and left for patients antipsychotics based on little information. After reviewing with intellectual and developmental disabilities who can’t medical records and carefully observing her patient, always tell us what is wrong,” Gentile says. 22.6 million working-age adults have a disability The most common are related to mobility cognition and 51% 38% HAVING A DISABILITY IS ALSO ASSOCIATED WITH more difficulty higher emergency higher accessing care department use hospitalization rates AS WELL AS HIGHER INCIDENCE OF chronic and acute conditions, obesity, physical inactivity, and smoking WORKING-AGE ADULTS WITH DISABILITIES ARE MORE LIKELY to be covered to have 10 or more to be admitted to not get needed by Medicaid physician visits a year to the hospital medical care due to cost 38% vs. 10% 38% vs. 6% 19% vs. 5% 15% vs. 5% COMPARED WITH PEERS IN THE GENERAL POPULATION: 2X AS LIKELY 5X HIGHER HALF AS LIKELY TO LIVE BELOW THE AVERAGE ANNUAL TO FIND EMPLOYMENT FEDERAL POVERTY LEVEL HEALTH CARE COSTS $13,492 vs. $2,835 LOW SOCIOECONOMIC STATUS MAY IMPEDE ACCESS TO housing and healthy food, as well as opportunities for social inclusion, WHICH COULD, IN TURN, AFFECT HEALTH. Data sources: Alissa C. Stevens et al., “Adults with One or More Functional Disabilities — United States 2011–2014,” Morbidity and Mortality Weekly Report 65, no. 38 (Sept. 30, 2016): 1021–25; Jae Kennedy, Elizabeth Geneva Wood, and Lex Frieden, “Disparities in Insurance Coverage, Health Services Use, and Access Following Implementation of the Affordable Care Act: A Comparison of Disabled and Nondisabled Working-Age Adults,” Inquiry 54 (Jan.–Dec. 2017): 1–10; Stephen P. Gully, Elizabeth K. Rasch, and Leighton Chan, “The Complex Web of Health: Relationships Among Chronic Conditions, Disability, and Health Services,” Public Health Reports 126, no. 4 (July/Aug. 2011): 495–507; and Lewis Kraus et al., 2017 Disability Statistics Annual Report (University of New Hampshire, 2018). commonwealthfund.org Case Study, September 2018 Creating Better Systems of Care for Adults with Disabilities: Lessons for Policy and Practice 3 In fact, there is copious evidence the health care system pregnancy,” says Lisa Iezzoni, M.D., a professor of medicine is not serving many Americans with disabilities well. at Harvard Medical School. Those living with physical disabilities, for example, In this study, we profile health plans and clinics that are face enormous difficulty finding medical practices with the exceptions, ones that have created custom models wheelchair-accessible equipment or clinicians who are for people with different types of disabilities: physical, cognizant of their unique risks, like pressure ulcers, which intellectual and developmental, and those related to can lead to life-threatening infections. Those disabled by serious mental illnesses.9 The health plans and clinics were mental illnesses such as schizophrenia and bipolar disorder selected based on the recommendations of researchers, tend to develop chronic diseases earlier and die younger industry representatives, and advocates for people living than others, in part because their conditions may not be with disabilities. While these programs, and others diagnosed or treated in a timely way.2 around the nation, often focus on serving people with just Many studies have documented these and other one type of disability, they share key components: problems: in general, Americans living with disabilities • a focus on prevention and proactive identification of receive less preventive care, have a higher incidence of secondary conditions chronic conditions, and visit the hospital and emergency department more often — leading to much higher • efforts to engage patients and build trust health care spending than for adults in the general population.3,4,5,6 People with disabilities also face higher • integration of long-term services and supports to out-of-pocket costs for their medical care and are twice as improve health and promote independence and social likely to live below the federal poverty level.7 inclusion. Despite the high levels of need, most health care providers We focus on working-age adults with disabilities, since receive little training in how to take care of people living their goals and needs are distinct from those of older with disabilities, and some focus to such an extent on the Americans who lose physical or cognitive function disability that they miss other medical conditions.8 “Adults because of aging, and there has been less attention paid to with disabilities are assumed not to be having sex, for this younger group to date. And we offer lessons about the instance. So they don’t get tested for sexually transmitted policy and payment modifications that may be needed to diseases, and there’s no discussion of their sex lives or support innovative care models. DEFINING DISABILITY The term “disability” is imprecise and may refer to a wide range of functional limitations.* Common Disabilities Examples Acquired brain and spinal cord injuries, spina bifida, cerebral palsy, stroke, PHYSICAL sensory disabilities including vision and hearing loss INTELLECTUAL/ Down syndrome, Fragile X syndrome, autism spectrum disorder, fetal DEVELOPMENTAL alcohol syndrome SERIOUS Schizophrenia, bipolar disorder, obsessive-compulsive disorder, MENTAL ILLNESS post-traumatic stress disorder * The Americans with Disabilities Act defines disability as a physical or mental impairment that substantially limits one or more major life activities. See U.S. Department of Justice, A Guide to Disability Rights Laws (DOJ, July 2009). Income support programs (SSI/SSDI) use a narrower definition, defining it as physical or mental impairment expected to last at least one year or result in death with inability to engage in any substantial gainful activity. See Social Security Administration, Disability Evaluation Under Social Security (SSA, n.d.). commonwealthfund.org Case Study, September 2018 Creating Better Systems of Care for Adults with Disabilities: Lessons for Policy and Practice 4 PROGRAMS SERVING PEOPLE LIVING WITH PHYSICAL DISABILITIES Henry Claypool was a 19-year-old college student in Boulder, Colorado, when a ski accident left him paralyzed from the chest down and in excruciating pain from a nerve injury, akin to “someone dragging razor blades back and forth across my right hand,” he said. Although he eventually finished college, he was a wreck: “I don’t think I was really able to deal with the trauma, and the change, and the chronic pain. I used alcohol to self-medicate.” Claypool’s life improved dramatically when nerve surgery providers. This section describes health plans or clinics relieved his pain and gave him back use of his arm. With that have created customized models for people living the help of Medicaid, Medicare, disability insurance, and with physical disabilities. Some programs are using other supports, he was able to live on his own and finish evidence-based models, including integrating behavioral college. He then made a career advocating for access to and physical health care, while others have developed personal assistance services, transportation, and other homegrown approaches. When available, we offer supports that promote health and resilience for people evidence of their impact on patients’ experiences, health with disabilities. Eventually, he developed enough outcomes, and costs. self-care skills and financial independence that he longer needed public support. Independence Care System During his recovery and over Since 2000, Independence Care System (ICS), a nonprofit the next 16 years, Claypool Medicaid managed long-term care plan, has coordinated had regular visits with the the medical care and long-term services and supports for clinicians and therapists at adults with physical disabilities in New York City. Ninety Denver’s Craig Hospital, a percent of its 2,400 members with physical disabilities rehabilitation hospital for use a wheelchair or other assistive device, and 30 percent patients with spinal cord require 12 to 24 hours of assistance every day. Henry Claypool or traumatic brain injuries. ICS president Rick Surpin says members routinely But when a new job brought encounter physical barriers (e.g., inaccessible medical him to Washington, D.C., in 1998, he left behind this equipment or facilities) and bias in their interactions support system. Claypool had to search out clinicians with with health care providers. Because of a lack of access expertise in issues like skin breakdown and neurogenic to primary and preventive care, many receive only bladder problems, which are common among people with episodic medical care, often in emergency departments, paralysis. “At Craig, I could go in for an evaluation and get or require hospitalizations for conditions that could have a comprehensive look at all my body systems. In D.C., it been treated in the community if addressed earlier. As a was more piecemeal,” he said. “I was fortunate that I had consequence, they may experience delayed diagnoses, some basic understanding of how my body worked and improper treatment, and premature death, Surpin was able to cobble together a network of specialists that says. To help, the plan has taken a “center-of-excellence has given me the basic support I need.” approach” — offering disability awareness training to Claypool’s experience is common: people with physical staff at a handful of clinics, helping them modify their disabilities who don’t live near top-tier specialty facilities processes and facilities to accommodate members, and struggle to find well-coordinated care and knowledgeable then directing members to those providers. commonwealthfund.org Case Study, September 2018 Creating Better Systems of Care for Adults with Disabilities: Lessons for Policy and Practice 5 It has, for example, coached staff at five women’s health To identify members who may need additional support, facilities, which then made simple modifications, like adding ICS developed a risk-prediction system that combs through Velcro straps to mammography machines to hold women’s data from the nurses’ assessments. Leaders have found that arms in place if they are unable to do so themselves. ICS also members are at higher risk when they cannot name their sends a nurse educator along during members’ visits to offer primary care providers (suggesting they haven’t established a good relationship with them), report poor health, or have clinicians tips on how to enable accurate and comfortable had a recent and potentially avoidable hospitalization. exams.10 When someone appears to need help, members of a complex As part of New York State’s Medicaid requirements, ICS care team (a nurse, social worker, and behavioral health nurses assess members’ functioning and physical and specialist) are deployed to offer support, sometimes through behavioral health at least every six months, or when their home visits or counseling to address signs of depression. conditions change, and social workers then help members The flexibility afforded by managed care enables ICS to offer develop plans to meet their near- and long-term needs. About services that are not reimbursed by Medicaid but nonetheless a fifth of ICS members make use of Consumer Directed contribute to members’ health, independence, and quality Personal Assistance Services, a Medicaid program that allows of life, including a wheelchair purchasing, evaluation, and them to hire and train their personal care attendants, home repair clinic; free membership to an accessible gym and adult health aides, and nurses.11 day program; and group art and other classes. ICS deploys a care coordinator to an accessible gym and adult day program, the Axis Project, which was created by two of its members. Being at the gym helps the care coordinator “stay close to members” and address any problems they may be having obtaining services. Photos by Donnelly Marks. commonwealthfund.org Case Study, September 2018 Creating Better Systems of Care for Adults with Disabilities: Lessons for Policy and Practice 6 On New York’s 2017 Managed Long-Term Care Report psychiatrist and therapist, and take part in group support Card, 90 percent of members (including older adults to help them understand there is optimism and hope as well as those with physical disabilities) rated ICS as despite their current state of health.” good or excellent. Seventy-four percent demonstrated improvements in locomotion and 92 percent remained Nurses and a trained peer (a clinic patient) lead a six-week stable or had improvements in terms of shortness of course for all new patients on living with mobility breath. In both cases, these percentages are significantly limitations, including evaluating potential treatments, higher than the statewide average among managed getting good nutrition and exercise, and coping with long-term care plan members.12 Eighty-two percent of frustration and fatigue.13 The institute also employs members said their pain was controlled and 89 percent independent living skills workers (typically social were not lonely or distressed — both statistically lower workers, paid for through a Medicaid waiver) to visit proportions than the statewide average. patients in their homes to ensure they are equipped to care for themselves and help them secure better housing, go back to school, or find a job.14 Courage Kenny Rehabilitation Institute Courage Kenny Rehabilitation Institute, part of An independent evaluation of Courage Kenny’s model Minneapolis-based Allina Health, has a primary care found a significant reduction in total costs of care for clinic that services about 325 adults, most under age Medicaid beneficiaries in 2016, mostly through lower 60, with spinal cord injury, traumatic brain injury, or use of acute care.15 Courage Kenny reports this trend musculoskeletal conditions. continued in 2017: among 198 Medicaid beneficiaries, there Primary care clinicians meet with patients for hour-long was a marked reduction in hospitalizations.16 There was, appointments to monitor their chronic conditions and however, an increase in emergency department (ED) visits; identify and address secondary conditions. Patients have the program’s leaders say ED visits are often for emergent an average of nine conditions, including hypertension, medical issues, and that the uptick may be a function of heart conditions, and arthritis. Primary care providers the decline in hospitalizations. This is because prior to are able to refer patients to on-site specialists, including enrolling at Courage Kenny, many such patients would psychiatrists and psychologists who offer treatment for have been admitted to the hospital from the ED, which those coping with depression, anger, and other emotions. would then be counted as a hospitalization, not an ED visit. “Many experience depression when they receive their Leaders say that local ED staff feel comfortable sending life-altering diagnoses,” says Kyle Grunder, the clinic’s Courage Kenny’s patients home after treatment, given the director. “We prescribe an exercise plan, have them see our level of follow-up and support the clinic will provide. Many Courage Kenny patients are prescribed exercise or other therapeutic classes. Photos courtesy of Courage Kenny. commonwealthfund.org Case Study, September 2018 Creating Better Systems of Care for Adults with Disabilities: Lessons for Policy and Practice 7 Courage Kenny uses the Patient Activation Measure an adaptive driving course), and maintenance goals (e.g., to assess patients’ confidence and ability to care for take all medications as prescribed). Nurses met with themselves. In 2016, 61 percent of patients had achieved patients every quarter and were available via telephone higher levels of activation after a year. Seventy-three percent to answer questions and help arrange medical visits and of patients with moderate to severe depression improved support services. After two years, the 65 patients had on during the year.17 average improved their physical functioning, mood, and self-reported quality of life. Cost of care for preventable conditions increased significantly during the first year, University of Pittsburgh Medical Center Adult Spina likely because of greater detection and treatment of Bifida Clinic conditions. Costs declined during the second year, though The Adult Spina Bifida Clinic at the University of Pittsburgh not significantly.19 Medical Center is one of a handful of facilities specializing in ambulatory care for adults with spina bifida rather than To create a sustainable and replicable wellness program, children. Spina bifida is the most common permanently Dicianno and colleagues are piloting digital tools. The disabling congenital condition in the U.S. People with 18 Interactive Mobile Health and Rehabilitation (iMHere) spina bifida are, on average, living longer than they used to platform — developed with patients and accessible to thanks to improved medical, particularly urologic, care. The those with cognitive, motor, or sensory impairments — clinic treats more than 250 patients a year, many coming helps people manage their conditions and allows them from hours away. The Pennsylvania Department of Health to securely communicate with their clinicians via provides grant funding for the clinic for care coordination, smartphone. It includes a module that tracks medications mental health screening, and nutritional consultations. and reminds users to take them, and one that prompts users to perform catheterization and bowel management Brad Dicianno, M.D., a rehabilitative medicine physician and report problems. Another module prompts users to and the clinic’s director, has led research projects on how to conduct inspections of insensate skin and send photos support patients between visits. In one pilot, a nurse visited of wounds or other potential problems, while another patients in their homes to offer education on preventing reminds them to complete a survey that detects depressive complications and encourage them to set short-term goals symptoms. Case managers and clinicians can review (e.g., drink more clear fluids), long-term goals (e.g., complete patients’ responses and respond to problems. Interactive Mobile Health and Rehabilitation (iMHere) platform The Skincare app (far left) allows patients to track the progress of skin ailments by taking photographs with the smartphone’s digital camera. The MyMeds app (near left) keeps track of the patient’s medications, providing reminders to take them as prescribed. Screenshots courtesy of iMHere. commonwealthfund.org Case Study, September 2018 Creating Better Systems of Care for Adults with Disabilities: Lessons for Policy and Practice 8 During a yearlong randomized control trial, people who Inglis’ leaders say the experiment has pointed to the need were frequent users of the tool said it improved their to train residents in independent living skills, and to add ability to manage their spina bifida. Participants in the behavioral health specialists to their care team to offer intervention group experienced fewer medical problems greater emotional support. Residents also may benefit (e.g., urinary tract infections or wounds) and fewer ED from more advanced training in recognizing the signs of visits and hospitalizations than before the trial, while medical problems. those in the control group had more medical problems Inglis administrators had hoped to use the Program and service use.20 for All-Inclusive Care for the Elderly (PACE) model to support residents who wanted to live on their own. Inglis PACE combines Medicaid and Medicare dollars to offer Since 1877, Philadelphia nonprofit Inglis has provided flexible, capitated funding for all needed medical and housing and medical care for adults with physical long-term services and supports to people age 55 and disabilities including multiple sclerosis, cerebral palsy, ALS older. The model is for those deemed frail enough to need disease, and spinal cord injuries. Today, it serves nearly nursing home–level care, but who prefer to live in the 1,000 adults in the community and about 250 adults in community.22 Inglis House, its long-term care facility designed for people who use wheelchairs. The PACE model has been around since the 1970s, but 2015 legislation allowed pilots of programs that combine In 2016, Inglis launched an 18-month pilot involving 23 medical care and long-term services and supports (LTSS) people who wanted to transition from Inglis House to for younger people, including those with permanent independent living in accessible apartments built adjacent disabilities. Pennsylvania approved Inglis’ proposed pilot to campus.21 Many of the apartments are equipped with for the Medicaid portion of funding, but the Centers for smart home technology that allows paralyzed or mobility- Medicare and Medicaid Services has not yet done so for impaired residents to unlock doors and control lights, as the Medicare portion. “We decided we weren’t going well as heating, cooling, and entertainment systems. to wait any longer,” says Roth. “We wanted to test the coordination of the care, even though we didn’t have a Inglis enlisted primary care clinicians, social workers, capitated payment model.” Private grant funding paid for rehabilitation therapists, home care attendants, and others the clinically related services not reimbursed by Medicare to form a care team for these residents, coordinating or Medicaid, such as care coordination among providers. their work mostly through phone calls. But unlike in the long-term care facility, residents were responsible Inglis also runs an adaptive technology lab, where people for managing their own care, including making with limited mobility use tools such as eye-gaze software appointments and arranging transportation, a process to control computers. Other creative applications of that left some overwhelmed. “The approach worked well technology include use of 3D printers to make custom for patients who were driving their own care,” says Lea supports and virtual reality software that allowed a Frontino, vice president for information and adapted quadriplegic member to dance with an avatar. “He cried technology. But about a third became less engaged — and said, ‘You know I never thought I could dance,’” missing appointments and, in some cases, developing Frontino says. complications like urinary tract infections that brought them to the ED. “We’ve learned it’s one thing to coordinate care and another to help someone get a sense of what they are about to experience and ensure they have the skills to live independently,” says Dyann Roth, Inglis’ president and CEO. “That’s critical work that has not been funded.” commonwealthfund.org Case Study, September 2018 Creating Better Systems of Care for Adults with Disabilities: Lessons for Policy and Practice 9 PROGRAMS SERVING PEOPLE LIVING WITH INTELLECTUAL AND DEVELOPMENTAL DISABILITIES Heather O’Connor, age 46, of Cleveland, remembers the name of every person who has helped her in her decades-long struggle with autism and mental illness: the teachers and principals who handled her outbursts and encouraged her to stay in school; the therapists who helped her find ways to cope; and the college students and professors who “looked past the weird” and became friends. Like many others with comorbid conditions, O’Connor went for years without a clear diagnosis. Given her difficulties in school, some teachers suspected she had attention deficit hyperactivity disorder. Her parents were hesitant to have their daughter tested (and likely medicated) for what was then a newly recognized condition, and opted instead for therapy, which helped a bit, O’Connor says. But as she got older she “got more stubborn,” she says. An expulsion from high school for fighting led to a stint at a boarding school for troubled teens and, later, a psychiatric hospital. There, O’Connor received a diagnosis Heather O’Connor (left) celebrates her college graduation with family members. of depression and a prescription for medication that, she says, helped her feel calmer and better able to focus. A few years back, O’Connor set three goals: take better After high school, O’Connor enrolled in Cleveland’s notes in school, graduate from college, and learn to drive. Magnolia Clubhouse, a place where adults with mental She’s worked diligently on the first one, and this May illnesses come to socialize and take part in job training. she graduated from Cleveland State with a 3.0 GPA and Eventually, she found a temporary job, but when that a degree in anthropology. Recently, she’s found a driving ended, O’Connor fell into a major depression. “When I was school that works with people with autism. working I had stopped taking my medication because I In the following profiles, we describe efforts to ensure was feeling so good,” she says. A clash with a clubhouse people like Heather — those living with intellectual and staffer led to thoughts of suicide, and another visit to developmental disabilities — receive appropriate medical the psychiatric hospital. There, she was diagnosed with care and support to achieve their goals. bipolar disorder and prescribed a medication that has gone a long way to help stabilize her emotions. Mental Illness/Developmental Disabilities Just last year, at a behavioral health clinic in Washington, Coordinating Center of Excellence D.C., O’Connor was diagnosed as high-functioning In 2003, Julie Gentile, M.D., founded Ohio’s Mental autistic. “Even though the diagnosis is another thing to Illness/Developmental Disabilities Coordinating Center deal with,” she says, it has helped her make sense of some of Excellence, which she helps run through Wright State of her behaviors, including her intolerance of loud and University’s Boonshoft School of Medicine, where she crowded places. It also might explain her uncanny recall is a professor and chair of psychiatry. Through public for names and dates. speaking and training of medical residents and providers, commonwealthfund.org Case Study, September 2018 Creating Better Systems of Care for Adults with Disabilities: Lessons for Policy and Practice 10 Gentile — who became a specialist in mental health treatment for those with intellectual and developmental Individuals with IDD are disabilities (IDD) after her early experiences treating typically very genuine . . . they such patients — helps primary care clinicians and others who care for those with IDD understand relevant related tell it like it is. And working to get syndromes, engage with patients, and provide good their story, earn their trust — medical care. it’s a challenge and when it According to Gentile, effective medical visits start by works, it’s quite rewarding. creating an alliance with patients, no matter how limited their communication skills, to elicit as much diagnostic Julie Gentile, M.D., Chair and Professor, information as possible. Patients with IDD often come Wright State University Boonshoft School of to the doctor’s office with their assistants and caregivers, Medicine and clinicians may be tempted to address them for the sake of expediency. Gentile urges clinicians to speak medications,” Gentile says. “And you really don’t even directly to their patients, paying attention to nonverbal know what you’re treating until you take some of those cues; using simple yes/no questions; and offering clear away.” She also notes that medications are often overused guidance about what will and will not happen during and nonpharmaceutical treatments like speech and visits (e.g., you will not be getting a shot today, which occupational therapy may be underused. she says is often a worry).23 It’s also important to make patients feel safe during medical visits because many Gentile sometimes uses video visits to help her most have experienced trauma — abuse or neglect from complex patients. Since 2012, she and seven colleagues family members or caregivers. Gentile reassures patients have provided care for 1,300 patients with dual IDD by saying: “First, this is your appointment. We’re going and mental health diagnoses from more than 70 Ohio to talk about what you’re comfortable with. The more counties via a secure videoconferencing system. With this information I have, the more I can help you, but that’s on and other support, some 300 of her patients have moved your terms.’” from institutional to community living — saving Ohio an estimated $88,000 per person per year. Gentile urges clinicians to rule out physical health problems before looking to psychiatric causes of behavioral changes like mood swings or aggression that often bring IDD Tennessee’s Employment and Community First patients into contact with doctors. Clinicians also should CHOICES Program be aware of the heightened medical risks among those with In 2016, Tennessee tasked managed care companies with IDD, including the risk of developing heart disease and coordinating long-term services and supports for Medicaid obesity as well as seizures and hearing or vision problems. beneficiaries living with IDD, with a goal of helping them Patients may be unable to accurately report symptoms, find employment and live as independently as possible in and medical problems may present differently in this the community. Tennessee has been one of only handful of population, leading to missed or delayed diagnoses. 24 states to do this.26 Polypharmacy is also a problem: antipsychotics and/or In many states, Medicaid beneficiaries with IDD have mood stabilizers that are often used for their tranquilizing not been moved from fee-for-service to managed care for effects may result in metabolic side effects, movement long-term services and supports, as have beneficiaries with disorders, or other neurologic problems. “I’ve had 25 physical or other types of disabilities, in part because of many patients come to me with 30 to 35 prescription family members’ concerns about disrupting their existing commonwealthfund.org Case Study, September 2018 Creating Better Systems of Care for Adults with Disabilities: Lessons for Policy and Practice 11 relationships with providers.27 In Tennessee, families evidence-based approach to “supported employment” in asked the state to offer a managed long-term services and which specially trained staff help people with IDD identify supports program after seeing the positive effects it had their employment goals, find jobs that provide competitive for other disabled groups. Tennessee’s Employment and wages, and maintain their employment. More than 80 Community First CHOICES program has become a model percent of people completing the process have opted to for other states considering a transition from fee-for-service pursue employment, according to Patti Killingsworth, an to managed Medicaid for beneficiaries with disabilities, in assistant commissioner of TennCare, the state’s Medicaid part because it includes detailed expectations for how plans agency, and chief of long-term services and supports. should support beneficiaries. The managed care plans contract with providers who For example, plans must engage people in a planning specialize in preparing people to work and supporting process to help them identify their goals and the supports them in working. These supported employment providers they need to achieve them. If a person is institutionalized, are reimbursed based on achieving certain milestones: the plans must perform comprehensive assessments to exploring and documenting employment goals, creating determine beneficiaries’ interest in and capabilities for an employment plan, and gaining and retaining a job or living outside of institutions, create transition plans, ensure self-employment. Preliminary data show outcomes that all supports are in place, visit their new homes, and make are exceeding national averages for similar programs, regular follow-up visits. Plans also must assess family according to Killingsworth. caregivers’ abilities and offer them training and support. “Medicaid health plans and their network of providers really As of early 2017, there are no Medicaid beneficiaries with have to go beyond typical expectations if we expect to help intellectual and developmental disabilities living in large people have good quality lives in the community,” says institutions in Tennessee. Killingsworth. “They have to think about how to support Tennessee also has partnered with its managed care plans people to not just live in the community, but to work and to build the capacity of physical and behavioral health actively participate in their communities, increase their providers to treat people living with IDD. In partnership independence, and develop and build relationships — the with Vanderbilt University researchers, the state has created things that bring meaning and purpose to all of our lives.” a toolkit to help primary care providers communicate effectively with IDD patients and their caregivers, secure I don’t think there’s a day that informed consent, and keep in mind relevant physical and behavioral health issues. For example, there are tips for goes by that we don’t talk with dentists on how to reduce the use of sedation. our health plans. We also go To control the inappropriate use of psychotropic out to people’s homes with them medications among people with IDD, the state offers so that we can observe things prescribers free continuing medical education on other up close and personal and nonpharmacological approaches. It also instituted prior authorization requirements for these medications unless understand how it’s working there is evidence of a co-occurring serious mental illness. from the member’s perspective. The state also requires managed care plans to support people in finding work if they desire — and requires Patti Killingsworth Chief of Long-Term Services and Supports beneficiaries with IDD to explore their employment and Assistant Commissioner for the Bureau options before receiving certain other services, such of TennCare, Tennessee’s Medicaid program as independent living skills training.28 It relies on an commonwealthfund.org Case Study, September 2018 Creating Better Systems of Care for Adults with Disabilities: Lessons for Policy and Practice 12 PROGRAMS SERVING PEOPLE LIVING WITH SERIOUS MENTAL ILLNESSES Mary Tolle, 52, was in her late twenties and working as a computer programmer in San Antonio, Texas, when a divorce and diagnosis of a mental health condition disrupted her life. At her lowest point, she was unable to work, go to school, or socialize. The first psychiatrist she saw prescribed medications that reduced some symptoms, but didn’t help her understand what she was going through. “He didn’t even tell me my diagnosis, even though I asked,” she says. Forging a trusting relationship with a provider was Tolle helped create the Center’s drop-in clinic, known further complicated by her insurance status. When she as the Recovery Zone, where peer specialists use music, was employed and had insurance, she saw clinicians art, and other activities to foster connections among in the private sector. When she lost that coverage, she participants. “A lot of people have social anxieties, they’re turned to the Center for Health Care Services, the county tired from their depression and the medications, and mental health provider for San Antonio. Over the years, it’s hard for them to get out,” she says. “Having a safe and she worked with counselors and psychiatrists at several nurturing place to socialize is crucial to their recovery.” different clinics, splitting her time between treatment, She also leads group discussions about coping, self- work, and caring for her aging parents. Eventually, Tolle management tips, and exercise and nutrition, given that learned she had schizoaffective disorder, a rare mental many people with mental health conditions experience health condition that affects thinking and mood. weight gain as a result of taking psychotropic medications. In time, Tolle felt ready to When people with serious mental illnesses don’t feel go back to work full-time. welcome in clinics or trustful of their providers, they An employment specialist may avoid care or not follow treatment. In the following from the Center for Health profiles, we describe health plans or clinics that have Care Services helped her created customized models for people living with serious apply for jobs, and she mental illnesses that focus on earning patients’ trust and landed a position as a math integrating behavioral and physical health care. teacher at a junior college. Mary Tolle She also developed a Center for Health Care Services’ High Utilizer Program steady relationship with a In 2012, the Center for Health Care Services turned one of psychiatrist, leading to mutual trust and shared decision- its 15 clinics into a High Utilizer Program for people who making. When her doctor suggested adding a medication frequently visit emergency departments because of their for attention deficit hyperactivity disorder, she agreed. “I medical and substance use issues. Many are homeless noticed improvement in my driving and ability to perform patients with schizophrenia or other untreated mental math calculations in my new position.” health conditions that make it hard for them to receive Eventually, Tolle became a certified peer specialist and care in traditional settings. “If you have a 20-minute began working at the Center for Health Care Services, appointment and have competing voices in your head, and where she helps others in recovery. The most important then your doctor wants you to succinctly say what’s going advice she offers them is that “there’s hope.” Before she on, you can see how that’s not going to work,” says Ruth came to the Center she hadn’t heard that; her previous Morgan, M.D., a family medicine physician who is helping providers told her “you’ll be in care for the rest of your the High Utilizer and other clinics integrate physical and life,” she says. behavioral health services. commonwealthfund.org Case Study, September 2018 Creating Better Systems of Care for Adults with Disabilities: Lessons for Policy and Practice 13 The High Utilizer Program offers an array of services: about patients’ transportation issues or housing or their free transportation; trauma-informed counseling; group relationship with a physician that other providers aren’t classes to help people quit smoking, lose weight, or meet aware of,” says James Schuster, M.D., vice president of other goals; and referrals to find supportive housing or behavioral integration and chief medical officer for employment. Clinicians offer substance use disorder behavioral and Medicaid services for the UPMC Insurance treatment and counseling, psychiatric medication Services Division. “So it’s a chance for them to get a holistic management, and primary care, but it may be some time view and think together about how they can best support before patients are willing to comply with medication someone.” UPMC for You and Community Care have and other treatment recommendations. “Over time we similar programs with other Pennsylvania Medicaid see that as people participate in group activities then managed care organizations. they will come back to treatment because they feel This model is derived from Connected Care, a pilot connected in some way,” says Morgan. organized by the state of Pennsylvania in which the Among 154 patients seen at the clinic during one year, managed care plans received financial incentives for there were 40 percent fewer emergency department visits, providing certain services and reducing acute care use. saving Bexar County an estimated $4.3 million.29 Over two years, this approach led to a decrease in mental health hospitalizations from 41.1 to 39.6 per 1,000, compared with an increase of 33.8 to 37.2 per 1,000 in a UPMC Insurance Services Division’s Models for control group. Among the subset of members who gave Integrated Care consent to share their behavioral health information, the The University of Pittsburgh Medical Center (UPMC) mental health hospitalization rate decreased by 20 percent Insurance Services Division, which oversees an array of (74.7 to 59.4 per 1,000).30 health plans, has fostered collaboration between two of its Medicaid managed care organizations to improve the In another novel program, Community Care responded to health of beneficiaries with serious mental illnesses and requests from rural behavioral health providers for help concurrent medical conditions. in improving the physical health of those with serious mental illnesses. The health plan experimented with The Integrated Care Program enables the two managed two approaches. In one, patients were given access to care organizations — UPMC for You, which covers physical online portals with their health information, customized health services, and Community Care Behavioral Health wellness interventions, and tools to help them track Organization, which covers behavioral health — to progress in efforts to quit smoking, lose weight, eat better, exchange information about members’ hospitalizations, and get more sleep. The other approach added a nurse to emergency department visits, lapses in medication refills, clinics to educate staff about ways to promote wellness, and treatments for mental health conditions. (Limited and to help patients coordinate their care and track their information about substance use disorders is shared with progress in meeting goals. In both models, case managers members’ permission.) and peer support counselors, who typically help patients with behavioral health problems, also coached patients to Care managers use electronic health records and claims help them improve their physical health. data to identify those at risk of developing serious health problems and offer support and education, often over the A study found that both increased patients’ level of telephone, with support from care managers at clinical activation, their engagement in primary and specialty sites. Care managers, pharmacists, and providers hold care, and perceived mental health status.31 Community monthly meetings to talk through the needs of patients Care has spread a combined version of this model, using with complex conditions and develop shared plans. “Often self-management tools, wellness coaching, and nurses, to care managers in one setting might know something 49 clinics in 39 counties across Western Pennsylvania.32 commonwealthfund.org Case Study, September 2018 Creating Better Systems of Care for Adults with Disabilities: Lessons for Policy and Practice 14 Resources for Human Development’s Assertive health status and liaise with their primary care providers, Community Treatment Program peer support specialists offer them advice based on their Resources for Human Development, a national human firsthand experiences, says Gina Hiler, Resources for services provider, runs 13 assertive community treatment Human Development’s Midwest regional director. “They (ACT) programs, which deliver and coordinate intensive might talk to clients about practical strategies for their mental health care services for people whose lives are too diet, activity, and medication regimens while they’re in unstable to be treated in a clinic setting. recovery. They also connect people to natural supports in the community, whether that involves going with them to In Iowa, for example, a nurse, mental health counselor, AA or NA meetings or going out for pizza,” she says. substance use specialist, and peer support counselor make home visits to help people living with mental illnesses Iowa’s ACT teams are supported by Medicaid, often compounded by substance use disorders. The ACT supplemented by county funding to make up for the fact team visited one man on the day he was released from jail, that Medicaid services are billable only on weekdays but finding him temporary housing and making daily trips “ACT is a seven-day-a-week, 365-day-a-year program,” to deliver his medication for bipolar disorder. After a few says Hiler. Among the 50 people receiving ACT services months, he had moved into permanent housing and no in the Waterloo, Iowa, region during the program’s first longer required the daily visits. With intensive support year, 23 percent have had psychiatric hospitalizations, from ACT staff, he has remained stably housed for 10 compared with 40 percent in one large study of ACT participants.33 Nearly all (93 percent) have remained stably months, without hospitalizations or incarcerations. housed during their first year of engagement with the The field team is supported by a psychiatrist and program, and 83 percent have had no arrests or other law psychiatric nurse practitioner who offer virtual visits to enforcement involvement (compared with 67 percent in clients via iPads or laptops. While nurses monitor clients’ the large study of ACT participants). In Iowa, staff from Resources for Human Development make home visits to help people living with mental illnesses. Photos courtesy of Resources for Human Development. commonwealthfund.org Case Study, September 2018 Creating Better Systems of Care for Adults with Disabilities: Lessons for Policy and Practice 15 SHARED FEATURES OF PROGRAMS SERVING ADULTS LIVING WITH PHYSICAL DISABILITIES, INTELLECTUAL AND DEVELOPMENTAL DISABILITIES, OR SERIOUS MENTAL ILLNESSES While the programs we profile here are customized for not be confined to institutions if their needs can be particular groups, they share certain features that appear accommodated outside of them. In 2015, spending on LTSS to be central to their effectiveness. Most prominently, all of made up 30 percent of Medicaid program expenditures.36 the programs proactively identify and address the unique Since the Olmstead decision, the proportion of LTSS risks and needs of people living with disabilities, including spending for services to allow people to live independently complications stemming from those disabilities as well as has surpassed that spent on institutional care.37 chronic conditions like diabetes and depression. Medicaid and other health care payers may save money by The programs take steps to earn patients’ trust, as moving people out of institutions and supporting them people living with disabilities may be wary of a health in the community. According to Aetna, which oversees care system that often makes it hard for them to get care LTSS in 10 states, the savings generated from managing and in which providers may see them only in terms of care of an individual in a home or assisted living facility as their disability. They do so by including patients in care opposed to an institutional residential facility range from planning, and by offering opportunities for them to $2,000 to $5,000 per member per month.38 socialize with providers and other patients. Disability advocates welcome this trend, which could Many also incorporate counseling and other services to further their efforts to shift from the medical model of identify patients’ trauma, depression, or other problems that may occur among those living with disability, disability, which defines people in terms of their deficits, particularly among those who lose function from a toward the social model, which emphasizes their well- progressively disabling condition or catastrophic accident.34 being and social inclusion.39 Leveraging Long-Term Services and Supports to While still maintaining a Promote Independence The programs serving adults with disabilities also role in protecting individuals integrate medical care with long-term services and they serve from serious, supports (LTSS), a broad range of benefits provided to avoidable harm, LTSS systems disabled and other Medicaid beneficiaries. Services and supports may include transportation, help with bathing must balance that responsibly or cooking, wound management, or other complex with the individual’s right care, as well as supports like home modifications and to take risks and sometimes adaptive technology to make it possible for people living with disabilities to pursue education, work, or experience adverse develop relationships.35 LTSS also covers care provided in consequences as a result. institutional facilities or day programs. LTSS have become more important in recent decades as Steve Kaye Cochair of the Committee and Professor, more adults with disabilities live in the community — a Department of Social and Behavioral Science, product of their wishes and the Supreme Court’s 1999 University of California, San Francisco Olmstead decision, which held that people should commonwealthfund.org Case Study, September 2018 Creating Better Systems of Care for Adults with Disabilities: Lessons for Policy and Practice 16 Medicaid Expenditures for and Community-Based Services Now Exceed Spending for Medicaid Expenditures for Home Home and Community-Based Services Now Exceed Spending for Institutional Services Institutional Services Percent of Medicaid expenditures 100 90 80 70 60 50 40 30 20 10 0 1981 1983 1985 1987* 1989 1991 1993 1995 1997 1999 2001 2003 2005 2007 2009 2011 2013 2015 Institutional services Home and community-based services * Because of an anomaly in the data, Truven Health Analytics did not report 1987 figures. Notes: Note: The 2017 Long-Term Services and Supports State Scorecard found variation in states’ spending on institutional vs. community-based care for older adults and those with disabilities. Minnesota and Washington State spent 65 percent or more of their Medicaid LTSS dollars on home and community-based services, while Alabama spent just 13.6 percent. Source: Data source: Steve Eiken et al., Medicaid Expenditures for Long-Term Services and Supports (LTSS) in FY 2015 (Truven Health Analytics, April 14, 2017). To oversee the transition of people with disabilities from for what happens to you,” says G. Lawrence Atkins, institutions to community housing, and to coordinate executive director of the MLTSS Health Plan Association, an the array of supports they need to live independently, association of managed care organizations administering nearly half the states have turned to managed care plans.40 LTSS on behalf of state Medicaid agencies. Advocates have expressed concerns that assigning the supervision of LTSS to managed care plans, especially those unfamiliar with the unique needs of people living CHALLENGES TO SPREADING EXEMPLARY with disabilities, may lead to stinting on crucial services, PROGRAMS including hours allotted for direct support staff. Despite the benefits of customizing care models for Americans with disabilities, few health plans and But others say managed care when done well can promote health and independence among populations that have providers have done so. Outside of urban areas, people been poorly served. “The biggest increment of benefit living with disabilities are often geographically dispersed, comes from the fact that there is an organization, and a reducing the incentive for an organization to specialize in care manager in that organization, with responsibility serving them. commonwealthfund.org Case Study, September 2018 Creating Better Systems of Care for Adults with Disabilities: Lessons for Policy and Practice 17 The Veterans Health Administration, which provides care to the hundreds CREATING OPPORTUNITIES FOR EMPLOYMENT AND of thousands of veterans disabled SOCIALIZING: BROOKS REHABILITATION CLUBHOUSE by traumatic brain and spinal cord injuries, has overcome the problem In 2008, Jacksonville, Florida–based Brooks Rehabilitation opened of geography by using a hub-and- a day program to help patients with acquired brain injury (ABI) after spoke model to extend the expertise their medical and therapeutic treatment ends to help them continue of multidisciplinary teams at regional to improve their physical and cognitive functioning as well as their centers to primary care practices social and psychological function. “We found as we discharged these around the country. It also relies on people home, if there’s not something to keep them engaged, there telehealth to provide mental health can be declines that lead to not only bad quality of life but higher care to patients who live a long medical cost,” says Doug Baer, Brooks’ CEO. distance from its facilities.41,42 The Brooks Clubhouse offers social opportunities, adaptive sports and recreational activities like aquatics, fitness training at the local Another limiting factor is funding, YMCA, music therapy, and arts and crafts, as well as vocational as people living with disabilities evaluation and training. Members, who can join for life, can visit are disproportionately covered by the clubhouse up to five days a week, with most paying about $10 Medicaid, which varies from state to a day. While Brooks accepts payments from the Florida Division of state in the extent and type of services Vocational Rehabilitation for its supported employment services, it covered.43 Many providers struggle to subsidizes the bulk of the clubhouse’s $300,000 annual budget. “It’s say afloat or look to philanthropy to supplement their reimbursements. In pennies on the dollar” to run the clubhouse, compared with formal addition, Medicaid and other payers neurological rehabilitation services, says Kathy Martin, a cognitive may not adequately account for the rehabilitation therapist who founded and manages it. There are fewer complexity and severity of need than 10 clubhouses for people with acquired brain injuries in the U.S. among people living with disability and hundreds of clubhouses for people with mental illnesses.44 when setting reimbursement rates, and Though not a formal rehab program, the clubhouse has helped people health plans serving disabled patients reclaim their lives. One man joined 30 years after his stroke, which may not have enough members to had left him with severe aphasia, or speech loss. “Now, he can express spread risk. 80 percent of what he’s trying to say, compared with about 5 percent before,” Martin says. “That speaks to the value of putting people in an Through home and community-based arena where there’s constant communication and stimulation.” services waiver programs, some health plans have been able to use Medicaid funding to cover services such as peer supports (Pennsylvania), employment services (Tennessee), and remote monitoring equipment (Ohio). These waivers have enabled states to direct funds to new programs (and, in the case of Tennessee, to clear waiting lists for services for the physically disabled). But states’ budgets for home and community-based services are tied to historical spending levels, which experts say likely underestimate the demand. Brooks Clubhouse members help prepare shared meals. Photo courtesy of Brooks Clubhouse. commonwealthfund.org Case Study, September 2018 Creating Better Systems of Care for Adults with Disabilities: Lessons for Policy and Practice 18 While many states have entered into managed care arrangements with the expectation that closer NATIONAL QUALITY FORUM: management of medical and long-term services and supports will lead to savings, that may be unrealistic, Recommended Performance at least in the short run, as long unmet needs are Measurement Domains for recognized and addressed. “Where you can save Long-Term Services and Supports money is in reducing hospitalizations and lengths of stay. Will that pay off in a given year? Absolutely not,” ICS’s Surpin says. “Might it in three, five, or 10 years? Probably, • Service delivery and effectiveness but no one has run the experiment.” • erson-centered planning and P Some also caution there may be limited ways to reduce coordination spending on the services needed to support people with serious disabilities. “People don’t get any ‘less’ Down • Choice and control Syndrome, or get any less on the autism spectrum, • Community inclusion for example,” says Mark Davis, president of the Ohio Provider Resource Association, which represents for-profit • Caregiver support and nonprofit organizations serving Ohioans with developmental disabilities. “These are chronic conditions • Workforce for which people will need a lifetime of support.” • Human and legal rights Measuring What Works • Equity Experts say developing fair and sustainable payment models will require getting a better handle on the quality • Holistic health and functioning and adequacy of medical and LTSS services. Current assessment methods, for instance, don’t track things that • System performance and have a bearing on resource utilization, such as the safety accountability and accessibility of people’s homes. • onsumer leadership in system C A committee convened by the National Quality Forum has called for a standardized approach to quality development measurement and reporting to assess whether LTSS needs are being met and to enable comparison of different models. Among other proposals, the committee workers typically receive low wages despite the rising recommends greater attention to whether and how demand for their services.46 In Minnesota, some 8,000 health systems and plans honor patent choice.45 home health care jobs are unfilled, forcing some people with disabilities to live in nursing homes rather than apartments — a costlier option, in the long run, and one Workforce Shortages that runs counter to most people’s preferences.47 Another impediment to spreading exemplary programs is the national shortage of direct support professionals “Direct support staff pay is below the poverty level for who help with basic activities like eating and bathing. many,” Davis says. His organization works with youth at People living with disabilities often face challenges risk of dropping out of high school to prepare them for finding, training, and keeping personal aides. These careers as direct support aides. commonwealthfund.org Case Study, September 2018 Creating Better Systems of Care for Adults with Disabilities: Lessons for Policy and Practice 19 There are also problems recruiting clinicians to work with disabled groups. Resources for Human Development, which runs assertive community treatment programs in Iowa and elsewhere, has found it particularly hard to recruit mental health counselors and other trained staff in rural areas. “We have learned that we must be willing to invest resources and time to train and appropriately credential staff who desire to serve in their communities,” says Gina Hiler, regional director for Resources for Human Development. A PATH FORWARD Ultimately, reducing health disparities and enabling those with disabilities to live their lives with dignity and independence will require a constellation of policy and health system changes. Chief among these are ensuring sufficient funding to support medical and long-term services and supports providers, direct support staff, new forms of technology, and clinical education. Demonstration programs that test the effectiveness of new models could help. “I would love to see a huge pot of federal money for experimentation to determine if we can build meaningful subcapitation models for a disability population — combining primary care, social work, and home visits so we can figure out what that buys in terms of short-term and long-term savings,” says John Tschida, associate executive director for research and policy at Association of University Centers on Disabilities. commonwealthfund.org Case Study, September 2018 Creating Better Systems of Care for Adults with Disabilities: Lessons for Policy and Practice 20 NOTES 1. James Hogg and Irene Tuffrey-Wijne, “Cancer and 6. Jae Kennedy, Elizabeth Geneva Wood, and Lex Frieden, Intellectual Disability: A Review of Some Key Contextual “Disparities in Insurance Coverage, Health Services Use, Issues,” Journal of Applied Research in Intellectual and Access Following Implementation of the Affordable Disabilities 21, no. 6 (Nov. 2008): 509–18. Care Act: A Comparison of Disabled and Nondisabled Working-Age Adults,” Inquiry 54 (Jan.–Dec. 2017): 1–10. 2. Mark Olfson et al., “Premature Mortality Among Adults with Schizophrenia in the United States,” JAMA 7. Kennedy, Wood, and Frieden, “Disparities in Insurance Psychiatry 72, no. 12 (Dec. 2015): 1172–81; Sukanta Saha, Coverage,” 2017; and Sophie Mitra, Patricia A. Findley, and David Chant, and John McGrath, “A Systematic Review of Usha Sambamoorthi, “Health Care Expenditures of Living Mortality in Schizophrenia: Is the Differential Mortality with a Disability: Total Expenditures, Out-of-Pocket Gap Worsening Over Time,” Archives of General Psychiatry Expenses, and Burden, 1996 to 2004,” Archives of Physical 64, no. 10 (Oct. 2007): 1123–31; and Joseph F. Hayes et al., Medicine and Rehabilitation 90, no. 9 (Sept. 2009): 1532–40. “Mortality Gap for People with Bipolar Disorder and 8. This experience has been so commonly reported Schizophrenia: U.K.-Based Cohort Study 2000–2014,” and documented among those with disabilities — and British Journal of Psychiatry 211, no. 3 (Sept. 2017): 175–81. others — that is has been given a name: diagnostic 3. Among Medicaid beneficiaries with disabilities, there is overshadowing. It has been defined as: “once a diagnosis is a high prevalence of cardiovascular and central nervous made of a major condition there is a tendency to attribute system diseases, as well as behavioral health issues. See all other problems to that diagnosis, thereby leaving other Richard G. Kronick, Melanie Bella, and Todd P. Gilmer, coexisting conditions undiagnosed.” See Neuroglossary The Faces of Medicaid III: Refining the Portrait of People (Neurotrauma Law Nexus, n.d.). with Multiple Chronic Conditions (Center for Health Care 9. This report is part of a portfolio of work examining Strategies, Oct. 2009). care models that serve high-need, high-cost patient 4. Susan Kinne, Donald L. Patrick, and Debra Lochner populations. To read other case studies, see https://www. Doyle, “Prevalence of Secondary Conditions Among commonwealthfund.org/series/care-models-high-need- People with Disabilities,” American Journal of Public high-cost-patients. Health 94, no. 3 (Mar. 2004): 443–45; Thilo Kroll et al., 10. Independence Care System and New York Lawyers for “Barriers and Strategies Affecting the Utilization of the Public Interest, Breaking Down Barriers, Breaking the Primary Preventive Services for People with Physical Silence: Making Health Care Accessible for Women with Disabilities: A Qualitative Inquiry,” Health and Social Care Disabilities (ICSNY/NYLPI, Oct. 2012). in the Community 14, no. 4 (July 2006): 284–93; and James H. Rimmer, Ming-De Chen, and Kelly Hsieh, “A Conceptual 11. For more information, see New York State Department Model for Identifying, Preventing, and Managing of Health, Consumer Directed Personal Assistance Secondary Conditions in People with Disabilities,” Program (CDPAP) (NYSDOH, revised July 2016); and Physical Therapy 91, no. 12 (Dec. 2011): 1728–39. Henry Claypool and Molly O’Malley, Consumer Direction of Personal Assistance Services in Medicaid: A Review of 5. Stephen P. Gully, Elizabeth K. Rasch, and Leighton Four State Programs (Kaiser Commission on Medicaid Chan, “The Complex Web of Health: Relationships Among and the Uninsured, March 2008). Similar programs exist Chronic Conditions, Disability, and Health Services,” in nearly all states, operating on the principle that people Public Health Reports 126, no. 4 (July/Aug. 2011): 495–507. with disabilities are experts on their needs and can best determine how to fulfill them. commonwealthfund.org Case Study, September 2018 Creating Better Systems of Care for Adults with Disabilities: Lessons for Policy and Practice 21 12. For more information, see New York State 19. Brad E. Dicianno et al., “Effectiveness of a Wellness Department of Health, 2017 Managed Long-Term Care Program for Individuals with Spina Bifida and Spinal Cord Report (NYSDOH, 2017). Injury Within an Integrated Delivery System,” Archives of Physical Medicine and Rehabilitation 97, no. 11 (Nov. 2016): 13. Adapted from courses on self-management; see Self- 1969–78. Management Resource Center, Help Your Community Take Charge of Its Health (SMRC, n.d.). 20. Brad E. Dicianno et al., “Feasibility of Using Mobile Health to Promote Self-Management in Spina Bifida,” 14. For more information about the Medicaid American Journal of Physical Medicine and Rehabilitation Community Access to Disability waiver, see Minnesota 95, no. 6 (June 2016): 425–37. Department of Human Services, Community Access for Disability Inclusion Waiver (MNDHS, last updated Mar. 21. Inglis leveraged state and city funds to build the 21, 2016). accessible apartments and subsidize rents, supplemented with money from its own endowment. 15. Roy Ahn, HCIA Complex/High-Risk Patient Targeting: Third Annual Report (NORC at the University of Chicago, 22. Martha Hostetter, Sarah Klein, and Douglas McCarthy, Feb. 2017), submitted to Center for Medicare and Medicaid Aging Gracefully: The PACE Approach to Caring for Frail Innovation. Elders in the Community (Commonwealth Fund, Aug. 2016). 16. For 198 clients enrolled in the clinic in 2017, using 4,532 23. For a more complete discussion, see Julie. P. Gentile and member-months prior to enrollment, and 9,629 member- Paulette M. Gillig, eds., Psychiatry of Intellectual Disability: months after enrollment, inpatient days were reduced A Practical Manual, First Edition (Wiley-Blackwell, 2012). by 78 percent, from 1.01 days per member per month in 24. Gentile and Gillig, Psychiatry of Intellectual Disability, the preenrollment period to .227 days per member per 2012. month in the postenrollment period. Hospitalizations were decreased by 53 percent, from .072 hospitalizations 25. Giampaolo La Malfa et al., “Reviewing the Use of per member per month in the preenrollment period Antipsychotic Drugs in People with Intellectual Disability,” to .038 hospitalizations per member per month in the Human Psychopharmacology: Clinical and Experimental postenrollment period. Emergency department (ED) use Journal 21, no. 2 (Mar. 2006): 73–89. increased by 97 percent, going from .038 ED events per member per month in the preenrollment period to .075 26. Twenty-four states have begun moving people events per member month in the postenrollment period. living with disabilities from fee-for-service to managed Medicaid, but those with intellectual and developmental 17. Based on their performance on the PHQ-9 survey. disabilities have often remained in traditional fee-for- Source: Personal communication with Kyle Grunder, service Medicaid for a variety of reasons, including plans’ Courage Kenny clinic director. See also Courage Kenny lack of experience in providing services like employment Rehabilitation Institute, Advanced Primary Care Clinic and community integration important to IDD  Outcomes: 2017 Outcomes (Allina Health, n.d.). beneficiaries, family members’ concerns, and a strong provider lobby. 18. Many people with spina bifida are now living longer than they used to. See National Institute of Neurological 27. There are other reasons that people with physical Disorders and Stroke, Spina Bifida Fact Sheet (National disabilities are often moved into managed care ahead of Institutes of Health, updated July 6, 2018). people with IDD, according to Patti Killingsworth: people with physical disabilities often have medical needs that commonwealthfund.org Case Study, September 2018 Creating Better Systems of Care for Adults with Disabilities: Lessons for Policy and Practice 22 make a more compelling case for integration of physical 34. See Martha Gerrity, Integrating Primary Care into health and LTSS and health plans have less experience Behavioral Health Settings: What Works for Individuals coordinating the kinds of supports that people with with Serious Mental Illness (Reforming States Group and IDD may need, including employment and community Milbank Memorial Fund, Dec. 2014). integration services, 24/7 residential supports, and 35. Long-term services and supports include two types of behavioral supports. In addition, the IDD advocacy and services: 1) home and community-based services, including provider communities have been more vocal opponents of services such as home health aides, personal care services, managed care. respite services, case management, and rehabilitative 28. Tennessee does not require Medicaid beneficiaries services; and 2) institutional services such as nursing living with IDD to work but rather to explore their options facilities and intermediate care facilities for individuals through the supported employment program before with intellectual disabilities. See Steve Eiken et al., Medicaid receiving certain other services. Researchers have pointed Expenditures for Long-Term Services and Supports in FY out that making Medicaid eligibility contingent on work 2016 (Medicaid Innovation Accelerator Program and IBM may pose particular burdens on certain groups, including Watson Health, May 2018). those with serious mental illnesses, whose symptoms 36. Eiken et al., Medicaid Expenditures, 2017. may change over time. See Richard G. Frank, Q&A: Work Requirements and Medicaid: What Will Happen 37. MaryBeth Musumeci and Erica L. Reaves, Medicaid to Beneficiaries with Mental Illnesses or Substance Use Beneficiaries Who Need Home and Community-Based Disorders? (Commonwealth Fund, May 2, 2018). Services: Supporting Independent Living and Community Integration (Henry J. Kaiser Family Foundation, Mar. 2014). 29. Bren Manaugh, “The Center for Health Care Services High Utilizer Program and Integrated Care,” presentation 38. See Aetna, Response to: Behavioral Health Services, (Center for Health Care Services, n.d.). Developmental Disabilities Services and Care for the Aged, Frail and Physically Disabled: Request for Information 30. James M. Schuster et al., “Connected Care: Improving (Aetna, June 15, 2015). Outcomes for Adults with Serious Mental Illness,” American Journal of Managed Care 22, no. 10 (Oct. 2016): 39. For more on the medical vs. the social model of 678–82. disability, see Disability Nottinghamshire, The Social Model vs. the Medical Model of Disability (DN, n.d.). 31. James M. Schuster et al., “A Payer-Guided Approach to Widespread Diffusion of Behavioral Health Homes in Real- 40. See Elizabeth Lewis et al., The Growth of Managed World Settings,” Health Affairs 37, no. 2 (Feb. 2018): 248–56. Long-Term Services and Supports Programs: 2017 Update (Truven Health Analytics, Jan. 29, 2018). 32. UPMC has received an additional award from the Patient-Centered Outcomes Research Institute (PCORI) to 41. U.S. Department of Veterans Affairs, Spinal Cord implement modified versions of this model in residential Injuries and Disorders System of Care (VA, last updated programs for children and methadone treatment programs. Nov. 22, 2017); and U.S. Department of Veterans Affairs, “VA Expands Telehealth by Allowing Health Care Providers 33. Craig Beach et al., “Forensic and Nonforensic Clients in to Treat Patients Across State Lines,” Press release, May 11, Assertive Community Treatment: A Longitudinal Study,” 2018. Psychiatric Services 64, no. 5 (May 2013): 437–44. commonwealthfund.org Case Study, September 2018 Creating Better Systems of Care for Adults with Disabilities: Lessons for Policy and Practice 23 42. The U.S. Department of Veterans Affairs also has voluntarily adopted new accessibility standards for medical equipment at its facilities — standards that have not gone into mainstream use because of the federal government’s decision to suspend rulemaking around them. On Dec. 26, 2017, the U.S. Department of Justice suspended rulemaking around regulations designed to ensure accessibility of medical equipment, including exam tables, weight scales, mammography equipment, and other diagnostic imaging technologies. See Lisa I. Iezzoni and Elizabeth Pendo, “Accessibility of Medical Diagnostic Equipment — Implications for People with Disability,” New England Journal of Medicine 378, no. 15 (Apr. 12, 2018): 1371–73. 43. Medicaid and CHIP Payment and Access Commission, People with Disabilities (MACPAC, n.d.). 44. In order for a program to be termed an ABI Clubhouse, it must agree to follow 32 standards established by Clubhouse International and the International Brain Injury Clubhouse Alliance, which govern clubhouse operations. 45. National Quality Forum, Quality in Home and Community-Based Services to Support Community Living: Addressing Gaps in Performance Measurement (NQF, Sept. 2016). 46. Eduardo Porter, “Home Health Care: Shouldn’t It Be Work Worth Doing,” New York Times, Aug. 29, 2017. 47. Chris Serres, “Shortage of Home Health Workers Forcing Young Minnesotans with Disabilities Into Institutions,” Minneapolis Star Tribune, May 5, 2018. commonwealthfund.org Case Study, September 2018 Creating Better Systems of Care for Adults with Disabilities: Lessons for Policy and Practice 24 ABOUT THE AUTHORS For more information about this case study, Martha Hostetter, M.F.A., is a writer, editor, and partner please contact: in Pear Tree Communications. She was a member of the Martha Hostetter Commonwealth Fund’s communications department Consulting Writer and Editor from June 2002 to April 2005, serving as the associate The Commonwealth Fund editor and then creating the position of Web editor. She is mhcmwf.org currently a consulting writer and editor for the Fund. Ms. Hostetter has an M.F.A. from Yale University and a B.A. About the Commonwealth Fund from the University of Pennsylvania. The mission of the Commonwealth Fund is to promote a high- performing health care system that achieves better access, Sarah Klein is editor of Transforming Care, a quarterly improved quality, and greater efficiency, particularly for publication of the Commonwealth Fund that focuses society’s most vulnerable, including low-income people, the on innovative efforts to transform health care delivery. uninsured, and people of color. Support for this research was She has written about health care for more than 15 years provided by the Commonwealth Fund. The views presented as a reporter for publications including Crain’s Chicago here are those of the authors and not necessarily those of the Business and American Medical News. Ms. Klein received a Commonwealth Fund or its directors, officers, or staff. B.A. from Washington University in St. Louis and attended the Graduate School of Journalism at the University of California, Berkeley. Editorial support was provided by Deborah Lorber. ACKNOWLEDGMENTS The authors gratefully acknowledge the following individuals who generously shared information and insights: James Abreu; Sharifa Abu-Hamada; G. Lawrence Atkins, Ph.D.; Doug Baer; Tom Braverman; Hilda Caba; Henry Claypool; Mark Davis, M.S.; Brad Dicianno, M.D.; Alex Elegudin, J.D.; Regina Estela; Brendan J. Flinn, M.P.H.; Wendy Fox-Grage, M.S., M.P.A.; Lea Frontino, B.S.N.; Julie Gentile, M.D.; Brenda Goldstein, M.P.H.; Brian Gould, M.D.; Commonwealth Fund case studies examine Kyle Grunder, M.B.A.; Allison Hamblin, M.S.P.H.; Gina Hiler, health care organizations that have achieved M.P.A.; Lisa Iezzoni, M.D.; Steve Kaye, Ph.D.; Jae Kennedy, high performance in a particular area, have Ph.D.; Patti Killingsworth; Debra Lipson, M.H.S.A.; Kathy undertaken promising innovations, or exemplify Martin, M.Ed.; Jennifer Mathis, J.D.; Michael Monson, attributes that can foster high performance. It is M.P.A.; Ruth Morgan, M.D., Heather O’Connor; Maureen hoped that other institutions will be able to draw Pero; Dyann Roth, M.S.; Sarah Ruiz, Ph.D.; James Schuster, lessons from these cases to inform their own M.D.; Kathryn Stambaugh, M.P.H., M.B.A.; Rick Surpin; efforts to become high performers. Please note Mary Tolle, M.A.; John Tschida, M.P.P.; Amber Willink, that descriptions of products and services are Ph.D.; Elizabeth Geneva Wood, Ph.D.; and Silvia Yee, L.L.B. based on publicly available information or data The authors also would like to thank the Commonwealth provided by the featured case study institution(s) Fund’s Melinda Abrams, Douglas McCarthy, Tanya Shah, and should not be construed as endorsement by and the communications team for their contributions to the the Commonwealth Fund. case study. commonwealthfund.org Case Study, September 2018