Bringing care, community, and concern to persons with intellectual and developmental disabilities

Persons with intellectual and developmental disabilities (I/DD) comprise about 1.5 to 2.5 percent of the general adult population. Further, about one in six, or about 15 percent of children aged 3 through 17 years have  one or more developmental disabilities, such as attention deficit hyperactivity disorder, autism spectrum disorders, cerebral palsy, hearing loss, intellectual disability, learning disability, vision impairment, and other developmental delays. Recently, the prevalence of autism among youth has spiked to about 1 in 68, causing alarm in the medical and public health communities. Although it always has been true, we also are just discovering today that about one third to one half of those with these conditions also suffer from mental illness co-morbidities, such as depression. And we are learning that the prevalence of chronic physical co-morbidities, such as heart disease and diabetes, is very high in this population.

For most of our history, persons with I/DD conditions were removed from their families and communities and warehoused in antiquated institutions that were completely separated from mainstream American life. If they worked at all, it was in separate sheltered workshops, frequently doing make-work for sub-minimal wages. In many ways, the historical plight of this population has been similar to that of persons with serious mental illness.

Now that world is beginning to change rapidly. The Olmstead Supreme Court Decision has determined that institutional care is not appropriate for virtually all persons with I/DD conditions. Care for this population needs to be provided in our local communities. Further, the Supreme Court Decision has been reinforced by the Affordable Care Act which will require fully integrated community-based care, housing, and employment within five years.

A major dilemma is that the I/DD population remains almost invisible to our federal entities. Neither NIMH nor SAMHSA support research or services focused specifically on this population. Importantly, the CDC does support a Center on Birth Defects and Developmental Disabilities; however, fiscal resources allocated by the Congress to this Center are dramatically inadequate to support needed work. A similar fiscal situation exists in the Administration on Community Living, which includes an Administration on Intellectual and Developmental Disabilities (AIDD) and, more recently, the National Institute on Disability and Rehabilitation Research.

As a result, our epidemiological knowledge of the I/DD population is very deficient. For example, although we have some limited knowledge of this population served through the Medicaid Program, we know next to nothing about the broader population that does not participate in Medicaid. Similar issues exist regarding our deficient knowledge of service delivery, insurance coverage, financing of care, housing, employment, etc.

To respond and to focus attention on this dire situation, the National Association for Persons with Developmental Disabilities (NADD) has prepared a policy brief on key actions that will be required to begin to address these deficiencies. This paper can be accessed at: https://thenadd.org/wp-content/uploads/2013/10/NADD-Poisition-Statement-on-letterhead1.pdf.

To support this work, NADD convened a strategic planning session on October 20 in Bethesda, MD, to review the policy brief and to outline initial steps that will be required to focus federal attention on this population. Participants included representatives from federal agencies, national organizations, advocacy groups, and the disability community.

We from the behavioral health community must support this important work. In many parts of the United States, care for persons with I/DD conditions is provided through the county mental health agency. Similarly, people with these conditions appear with increasing frequency in our county jails and in our county emergency rooms. An unknown number still are cared for in our state mental hospitals.

Our hats are off to NADD for its leadership and courage in bringing the population of persons with I/DD conditions out of the federal closet. NADD has demonstrated clearly that we must do much better than we have in the past! More about this important work in a future commentary.