Next Group at Risk: People with Autism

June 6th, 2011

We are proud advocates for nursing home residents, who often live at the mercy of abusive or neglectful staff. Now, there are rumblings in the media that people with autism may become victims of institutionalized abuse, as well. And two of the most illustrative articles have been published in The New York Times (NYT).

In April 2011, in an article titled A Generation of Autism, Coming of Age, the NYT reported that experts believe that there is a coming wave of people with autism who will soon be in need of adult services, due to the explosion of children who were diagnosed in the 1990s. It has been estimated that there will be about 500,000 children with autism who will become adults in the next 10 years. According to the article:

Services for adults with autism exist, but unlike school services, they are not mandated, and there are fewer of them. Combined with shrinking government budgets, the challenges are daunting.

“We are facing a crisis of money and work force,” said Nancy Thaler, executive director of the National Association of State Directors of Developmental Disabilities Services. “The cohort of people who will need services — including aging baby boomers — is growing much faster than the cohort of working-age adults that provide care.”

And any time there is institutional care, there is the possibility of abuse or neglect that can lead to harm. The second NYT article, published yesterday (A Disabled Boy’s Death, and a System in Disarray), highlights what can happen when the system goes wrong. According to the article:

…on a February afternoon in 2007, Jonathan, a skinny, autistic 13-year-old, was asphyxiated, slowly crushed to death in the back seat of a van by a state employee who had worked nearly 200 hours without a day off over 15 days. The employee, a ninth-grade dropout with a criminal conviction for selling marijuana, had been on duty during at least one previous episode of alleged abuse involving Jonathan.

Stories like this may make families want to keep the child/adult at home, that may not always be possible…and it may not even be best for the individual with autism. Family members may lack the physical, emotional, or financial resources to give the kinds of support their loved ones need to thrive. It’s never too early to start thinking about what might be needed to ensure a future. According to the NYT article published in April:

…many states are providing more support for people with autism who live with their families. They are also giving families greater flexibility and control over budgets with so-called consumer-controlled services, which reimburse families that hire friends or relatives, rather than outside caregivers, for regular care. …

Some families have pooled their own money and entered into cooperatives with other families, a challenge that can take years. Families with children who have developmental disabilities “are relentless advocates and have been the most successful at garnering resources and services,” Ms. Thaler said. “I think it may be the vulnerability of people with developmental disabilities that evokes in families and professionals a level of extraordinary empathy that makes them powerful advocates.”

According to Don Meyer, the founder and director of the Sibling Support Project: “Parents need to share their plans for their special-needs child with their typically developing kids. After Mom and Dad are no longer there, it is likely it will be the brothers and sisters who will ensure their sibling leads a dignified life, living and working in the community.”

For parents facing this challenge, the advocacy group Autism Speaks offers a free guide called the Transition Tool Kit, which include information about community living, employment, educational opportunities, housing, legal matters to consider, and other resources.

At HensonFuerst, we believe that every human being deserves respect and to live in a safe atmosphere. If you believe a loved one–a child or an adult–has been abused while in someone else’s care, feel free to call us for legal guidance. We’re always available by phone at 1-800-4-LAWMED, or via our website at www.lawmed.com.

If you have questions, HensonFuerst has answers.