The triumphs of disability policy

October 20, 2013

Despite many challenges and failures, the history of disability policy -- which happens to be the subject of my next book -- represents an overlooked triumph in American life. Our nation has opened its heart and its wallet to millions of our fellow citizens who live with intellectual disabilities. In popular culture, law, and social policy, we have come a very long way. As a result, millions of people are now living more productive and dignified lives.

The Terrill family/Harold Pollack
The Terrill family/Harold Pollack

I recently paid a visit to 27-year-old Beth Terrill of Elmhurst, Illinois. I met Beth through her parents, Cathy Ficker Terrill and David Terrill. Cathy and David have worked for years in and around the field of intellectual disability. Cathy served as past president of the American Association on Intellectual and Developmental Disabilities (AAIDD), and has received many other state and national honors.

I’m a little reticent to tell Beth’s story, because for so many, her life is sadly out of reach. Her situation inspires the phrase: “Results not typical.” But her life shows what is now possible for disabled people who receive proper support.

Beth works from 9 a.m. to 2 p.m. every day, preparing and serving food at Hinsdale High School not far from where she grew up. She drives herself to work and home each day. She hangs out with her boyfriend Chris, who is also disabled and lives with his parents nearby. She plays competitive volleyball, swims, medals at weightlifting, and does odd jobs around her parents’ home.

I videotaped our conversation, expecting to produce a transcript as I usually do. Despite somewhat pathetic production values, the video captures our wide-ranging conversation, which touched on matters from health insurance to gaining entry to kindergarten. As I watched it, I realized that Beth, Cathy, and David tell their own story better than I could. I’m grateful that the Terrills granted permission for me to post this video here.

Beth had several advantage few others in her position enjoy: Her parents are not only educated and middle-class. They are experts regarding evidence-based practices to promote independent functioning and self-determination among people with intellectual disabilities. Cathy and Dave are also skilled navigators of Illinois’ sometimes-forbidding social-service system. From the day Beth turned 16, her parents contacted the state of Illinois indicating that she would require specific services. As Cathy relayed in a separate interview:

“We were putting them on record that she would need services, so every year we sent the same letter, and we copied our state senator and our state rep, and we sent it to the state [intellectual disability] agency, and just reminded them that she was yet now another year older….”

“You and I have a distinct advantage because we work the field of human services, either as educators, or policy makers, or practitioners. We have the ability to attend conferences and glean first‑hand information about opportunities for our family members. Other people aren't as aware of systems, and services, and the exact day that you're supposed to apply for Social Security, and the exact way that you're supposed to makes sure that the individual education plan includes a transition plan so a child has options for services when she leaves high school. Many, many families are not aware of what they need to do to plan for the future.”

Such self-advocacy is especially important in Illinois, which has notoriously long waiting lists for intellectual disability services. Fortunately for Beth, the state has given young adults priority in the provision of key Medicaid-funded services. These have provided her, for example, with a life coach to help her master routine daily activities. Such support helped her to eventually transition to a supervised apartment, where she and her roommate now live.

I’ve mentioned in previous columns the impressive numbers of people now able to live in their own communities. The changes go deeper, too. With aggressive family advocacy, new legal protections, and proper supports beginning in early childhood, so many people with intellectual disabilities hold jobs, experience romance and heartache, hang out at the gym, live more independently and fully in ways that that were unimaginable 30 or 40 years ago.

This is a hard story to tell, because Americans living with intellectual disabilities are an incredibly varied group who experience an incredible variety of opportunities and constraints. Stereotypes of individuals with Down syndrome, traumatic brain injury, fragile X syndrome, or autism spectrum disorders--whether cruelly disparaging or the more positive, greeting-card kind-- are both pretty harmful. Preconceived notions hinder our efforts to view people as complicated individuals whose possibilities and preferences don’t always match what we expect.

Our conversation ended with a matter-of-fact discussion of Beth’s special-needs trust, established for that hopefully far-off day when she will want a new coat, a teeth-cleaning, or a family trip, and when David and Cathy will be gone. This called to mind unpleasant human realities families prefer to deny or ignore. More than 700,000 Americans with intellectual disabilities live with caregivers over the age of 60. Many families put off needed discussion and needed preparation. Putting things off often makes these realities of aging more traumatic and scary than they need to be. That’s certainly what our family did. I hope others can do better.

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Neil Irwin · October 20, 2013