Going Maverick in Wisconsin

Watching a replay of Top Gun on a Saturday afternoon with my 6-year-old incites nostalgia for the eighties. Tom Cruise (in his “Tiny Whinies”, as Luke describes them), Ice Man’s sneer, the classic rendition of “You’ve Lost that Lovin’ Feeling” - it takes me back to the Beaver Dam Cinema - and teenage dreams of all things possible.

It has been more than twenty years since my first Top Gun viewing and my initial aspirations. In many ways, life has evolved into something far more interesting. Working in Congress and serving the Under Secretary this past year has opened doors and experiences I never could have imagined. And still there is uncertainty.

As I send out resumes in anticipation of my fellowship completion in June, I struggle to reconcile the past and the future. In Washington there may be opportunities, but in Wisconsin there is family, the familiar and stability.

Also, as many parents raising a child with a disability can attest, state borders matter.

Working in Washington has sharpened my analysis of the services provided to persons with disabilities. I can provide a fairly accurate overview of a contest between California, Colorado or Connecticut. (For future reference, I have heard you wouldn’t want to have a disability south of the Mason-Dixon Line…) I possess informed opinions on which states offer the most comprehensive health care, which take care of their poor, and which value their children with actions and investments.

Wisconsin isn’t perfect, but it gets a lot of things right. Although we still institutionalize persons with disabilities, maintain inhumane waiting lists for essential services, and send many adults and youth with intellectual disabilities to sheltered workshops and call it employment, our commitment over time is apparent. In Wisconsin, a Medicaid children’s waiver provides a small amount of support that translates to options to help our daughter grow her independence. That is the main reason why this June, instead of remaining in Washington, we will return to Wisconsin and invest in teaching her to read.

The answer as to why she can’t learn this in school is complicated. I have spent years begging teachers to try, but this is a child who does not speak and is often underestimated. My choices usually boil down to archaic reading instruction in a self-contained classroom or inclusion with peers without disabilities and access to the general education curriculum. There is no middle ground. For us, literacy is not optional.

Nationally and in Wisconsin, we clearly have a long way to go in terms of high expectations and requirements for evidence-based instruction for our students with disabilities, especially those with intellectual disabilities. The variance in student performance and graduation rates across state lines is deplorable. An address should not dictate a future.

Still there is hope. The President’s blueprint for the reauthorization of the Elementary and Secondary Education Act will ensure that schools and teachers across every state be held accountable (and rewarded) for improving the performance of this subgroup. Health insurance reform will ensure that children with pre-existing conditions have access to care and parents of children with disabilities won’t have to remain in poverty in order to qualify.

In the end these basic accountabilities will change the state of our nation so that families won’t have to limit life choices based upon state lines.

For disability advocates, there is still a lot of work and educating to do. But I say, if we seek encouragement, look no further than Top Gun. Maverick might say the journey is never easy, but the lesson is to not give up. Personally, I feel the need – the need for speed!

Lisa Pugh is the 2009 Joseph P. Kennedy, Jr. Foundation Public Policy Fellow. She will work on disability policy for the House Committee on Education and Labor during the 111th Congress and in the Office of the Under Secretary in the Department of Education. She is being sponsored by The Arc Wisconsin. She will live for one year with her family in Washington, D.C. and return to her home in Madison, Wisconsin to share what she’s learned in June 2010.