People with intellectual disability and complex medical needs will require care throughout their lives. While some of the 5 million individuals in the U.S. with intellectual disability can live fully integrated lives in the community with minimal supports, 2 to 3 percent have complex medical and behavioral needs, are unable to perform self-care activities, lack the ability to communicate their wants and needs in an effective manner, and also may have health conditions that require on-going and immediate access to medical care.
Until age 21, the education system is mandated to support, treat and educate children with disabilities. After age 21, there is no mandate to provide health care or other services to this population. This loss of entitlements is often referred to as the “cliff.” Reaching age 21 exposes an individual to figuratively falling off a cliff with regard to supports and services.
Under our current system, when services are available, they are provided through fragmented systems that are costly and of low quality. With years of systemic underfunding, states have waiting lists for services for thousands of adults who have intellectual disability. Not every adult receives the needed supports and services. In 2016, over 400,000 individuals with intellectual disability were waiting for long term supports and services through the Home and Community Based Services.
We must do a better job connecting and coordinating the services and systems typically needed by this population, including individualized wraparound primary care, behavioral health, pharmaceutical management, allied therapies and long term supports and services. These services should be seamlessly available into and throughout adulthood and readily available in the community.
A population health approach focusing on the interrelated conditions and factors that influence health over the life course, including social determinants of health, will improve care and reduce costs through a reduction in ER visits and hospitalizations.