Why health care professionals must back full care continuum for autism and intellectual disabilities

The Americans with Disabilities Act (ADA) requires that health care entities provide full and equal access for people with disabilities. Physicians must diagnose and treat such individuals, even though they receive little or no training in medical school. It’s tricky when the patient cannot convey where it hurts or describe their pain and may refuse to cooperate with medical procedures.

Many physicians have refused to take on my 35-year-old son, who has been diagnosed with severe autism and Crohn’s disease. Surely, these refusals constitute discrimination. However, the physicians who rejected him cited a lack of resources to diagnose and treat someone with such a severe disability. Is it fair to hold physicians to these nondiscrimination laws when there is no training or resources to help them comply?

In his concurring opinion in the Olmstead v. LC case, the most famous case regarding people with disabilities and access to community services, Justice Anthony Kennedy warned about the possibility of tragic consequences for more severely disabled individuals if the ADA is misinterpreted. He said:

It would be unreasonable and a tragic event if the Americans with Disabilities Act of 1990 (ADA) were to be interpreted in a way that gives states an incentive, out of fear of litigation, to push those in need of medical care and treatment out of appropriate care and into settings with too little assistance and supervision.

In light of these concerns, if the principle of liability announced by the Court is not applied with caution and circumspection, states may be pressured into attempting compliance on the cheap, placing marginal patients into integrated settings devoid of the services and attention necessary for their condition.

The late Justice Ruth Bader Ginsburg stated in her majority opinion:

We emphasize that nothing in the ADA or its implementing regulations condones the termination of institutional settings for persons unable to handle or benefit from community settings. Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.

Individuals with severe disabilities were never supposed to be forced into community settings. Federal Medicaid law still requires that individuals with intellectual and developmental disabilities be given the choice of institutional or community-based placements. But under pressure from disability organizations that serve the less severe population, states often refuse to admit individuals who qualify into the remaining state-run institutional settings, even if that means they will receive inappropriate health care in community settings.

Public Intermediate Care Facilities (ICFs) or developmental centers took the place of what was once institutional settings for the intellectually disabled. These ICFs do not resemble the institutions of the 1980s.

About a year ago, I visited the Wrentham Developmental Center in Wrentham, Massachusetts. It was nothing like I expected. I always thought that these facilities were isolated from society, a place where individuals languish. This is far from the truth. The Wrentham Developmental Center offers the services that I have fought for over three decades for my son but was never successful in obtaining. They have doctors and nurses with specific expertise in diagnosing and treating individuals who have severe challenges with communication. They offer professionally-delivered allied health services like speech therapy, occupational therapy, recreational therapy, and vocational therapy. These are not only good placements for those who require this level of care but would also be an excellent venue for training health care professionals on how to work with people with severe disabilities.

Families with loved ones with severe disabilities need to know about this service option, and we need health care professionals to help us gain admission when it is appropriate. Health care professionals can assist us by being active politically and by making it known that they support the full continuum of care for individuals with intellectual and developmental disabilities.

Irene Tanzman is a patient advocate and author of Abie and Arlene’s Autism War.