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In some respects, life has gotten much better for many Americans with intellectual and developmental disabilities (IDD). The use of large state-run institutions has decreased dramatically from its peak in 1967 and the philosophy that each individual is entitled to person-centered care has been broadly embraced. But more than 7 million people in the U.S. with IDD are still facing substantial challenges, disability experts say. ¡°Although federal regulations require that most people receiving Medicaid-funded home- and community-based services (HCBS) be provided with a ¡®person-centered plan¡¯ that takes into account their wishes about where they live and how they spend their time, these regulations only require that service be sufficient to make sure people are healthy and safe,¡± says Steven Lutzky, PhD, President of consulting firm HCBS Strategies. ¡°States are not required to serve every person with IDD nor are they required to provide the supports necessary to truly fulfill the person-centered plan.¡±

In fact, only about 1.3 million, or 17%, of those in the U.S. with IDD were receiving home- and community-based services as of 2017. And people with IDD die at younger ages and have an increased risk of early death compared with the national average, according to studies in the U.S., Canada and the United Kingdom. According to a , while life expectancy for people with IDD has dramatically increased over the past century, people with IDD still die 10-15 years earlier than peers without disabilities. ¡°It makes me feel sad, scared and a little angry and I believe that researchers should be looking closer at this,¡± says Renee Manfredi, a self-advocate in Hawaii for people with IDD. ¡°If a person has IDD, they likely are not receiving the same level of health care that an individual without it would receive. It is my hope that this statistic, along with many others about individuals with IDD, will change.¡±

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People with IDD also experience high rates of poverty and unemployment. The 2018 National Core Indicators survey found only 20% of working-age adults supported by state IDD agencies were employed in a paid job in the community. Many of those worked limited hours at low wages. ¡°Employment is a big issue for many people with IDD,¡± says Sara Karon, PhD, an expert in person-centered planning for people with disabilities and a health services researcher with RTI International, a nonprofit research institute in North Carolina. ¡°In the past, employment meant a sheltered workshop but there¡¯s a push to move away from that because it¡¯s telling people that if you have a disability you can¡¯t work in the community. If someone chooses to work in a sheltered situation that¡¯s fine, but they need to know their options and have the support to choose to work elsewhere.¡± Complicating the employment issue is the fact that few people with IDD have driver¡¯s licenses so they are dependent on public transportation or other resources to get to a job.

A key component of building systems that support the desires of people with IDD is the ability to measure what that actually means and whether progress is being made. That¡¯s the goal of ongoing work at the Center for Rehabilitation Outcomes Research (CROR) at the Shirley Ryan ³Ô¹ÏÌìÌÃ91 in Chicago. Last year, CROR received a five-year $4.4 million grant from the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR) to develop improved ways to measure quality of services for those receiving home- and community-based services. ¡°There¡¯s a cottage industry of measurement instruments out there,¡± says CROR Director Allen Heinemann, PhD, the grant¡¯s principal investigator. ¡°But there¡¯s general dissatisfaction that they sufficiently reflect the needs and values of the people being served.¡± Karon is leading the first phase of the project, which involves developing and testing person-centered measures of effectiveness for those receiving HCBS services. Karon will be working closely with a Participant Council made up of people with disabilities, including IDD, and their advocates.

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One challenge in addressing the needs of people with intellectual and developmental disabilities is the diversity of the group. It includes individuals with autism, Down syndrome, cerebral palsy, epilepsy and fetal alcohol syndrome, among other conditions. Their numbers are growing because people born with Down syndrome are living longer and there has been a dramatic rise in autism diagnoses over the past several decades. Last year, the Centers for Disease Control and Prevention reported that approximately 1 in 54 children in the U.S. was diagnosed with an autism spectrum disorder (ASD) in 2016.

Those with IDD span all age groups. Those up to 21 years of age are legally entitled to a public education, while those who are 22 and older have ¡®aged out¡¯ of the school system. ¡°Turning 22 is a very delicate phase in the life span of a person with IDD,¡± says Giuseppina Chiri, PhD, a health services researcher with RTI International. ¡°As they are transitioning to the adult system, there can be a gap that leaves the person without services for a period of time. Some states say they don¡¯t have a waiting list but in fact some people wait years for HCBS services.¡± In 2018, there were almost 600,000 people with IDD on waiting lists for home- and community-based services in the U.S., according to the Kaiser Family Foundation. More than half of those were in a single state: Texas. Only nine states reported having no waiting lists.

The long-term services and supports people with IDD can access vary by state but they include help with personal care services like bathing and dressing, housekeeping tasks like cooking and money management as well as transportation and pre-vocational services. They may also include mental health counseling, home health aides and respite care for family members. With proper supports and services, people with IDD can thrive in their jobs, community activities like sports, vote in elections and make decisions about how to spend their time and money, disability experts say. The State of Pennsylvania, widely considered a national leader in creating community environments that support people with IDD, sums it up simply as the right to live an ¡°everyday life.¡±