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March 6, 2008 Over 50 years ago, parents of children with disabilities had few options. Their options were putting their child in an institution or keeping their child home and raising them "to the best of their abilities." Many parents put their children in institutions, but more and more parents started keeping their children home. This generation of parents, civic and community leaders changed the world of disabilities forever. They established schools and fought for special education in public schools. They established group homes and made these group homes an integral, accepted part of our community. They established work programs to ensure productivity, purpose and self esteem for people with disabilities. These work programs are now integral parts of our local economy paying millions of dollars in wages on the Peninsula and establishing efficient business partnerships with many large and small companies. When one looks at the difference in quality of life, choices and opportunities for people with disabilities in the last 50-plus years, the progress is clear. The benefits are obvious. And the gratitude due the generation that paved this way is immeasurable. We now live in a world where my daughter, who is 7 years old and has Down Syndrome, can read and happily progress in a "typical" school. She can take dance, art and piano lessons in "typical" classes. She can play any sport she would like. Her world has unlimited possibilities. At the same time, with great sadness, I watch the parents who paved the way for my generation quietly suffering. Many of these parents are in their 70s and 80s. They have kept their children at home with them their entire lives and now have nowhere for their children (who are now adults in middle age) to live. Some of these same parents have had nowhere for their children to work after special education was completed. They need a "Medicaid waiver" for their child to live in a group home or community setting and to be in a work program. What is a "Medicaid waiver"? The term means a person "waives the right to an institutional bed" by receiving a monetary waiver that provides funding for services in the community. They waive the "right to an institutional bed" to live and work in the community and live a life like ours. When a waiver is not available, people with disabilities who cannot stay at home most likely go to institutions. What is the problem? The problem is a waiting list of more than 4,000 people for this precious waiver in Virginia. The problem is more than 2,000 of these people are on the "urgent care" list — meaning they need services in 30 days due to severe medical or home situations. Last year, Virginia added 360 new waiver slots and hopes to add approximately 800 this year. Even with 800 new slots, the list will take decades to dissipate at this pace. Virginia is the only state still investing capital in rebuilding and expanding institutions, or "training centers." The average cost for a person in an institution is $150,000 a year. The average cost for a waiver is $56,000. Virginia spends millions of dollars in "training centers" and invests zero dollars in community housing for those with intellectual disabilities. If institutions were a good and viable option for the majority of people with disabilities, 49 other states would not have made the decisions they have to move away from institutions. Now imagine being the parent of a child with a disability. You are 80 years old and in failing health. Your spouse has died. You have no other family to help you with your disabled child, whom you have loved and nurtured for decades. You could have a stroke or numerous other health setbacks. What would happen to your child who is now an adult? Without a waiver, or a personal fortune of millions, your child will most likely end up in an institution. Imagine the burden of fear this is on the parent. Imagine the cruel change of life events this is for the adult child, the one most impacted. Switch gears and imagine being the parent of a teen with a disability who has gone through special education and has many hopes and desires for the future. This teen wants to work and live in a group home with friends. Now imagine the shock you experience when you discover your teen needs a waiver to participate in a work program — and you have no chance in the foreseeable future of getting one when you are 4,001 on the list. Imagine this teen becoming a young adult and sitting at home doing nothing but watching TV. Imagine all the years of dedicated special-ed instruction and the investment that has been made in this child truly being wasted. Too many people in Virginia are in this situation today. In a community blessed to have progressive and successful organizations like The Arc of the Virginia Peninsula, Hampton-Newport News Community Services Board and Eggleston Services — we can do better. We must do better. How? We must use our voice collectively to keep the Medicaid waiver issue and others associated with disabilities front and center. This collective voice needs to include parents of younger children — many of whom still do not realize the special-ed world they are in does not always lead to further education or work. A collective voice includes everyone. Please take a moment today to call or e-mail your legislative representative. That is something all of us can do. Our diverse society is a better, kinder and gentler place with people who have disabilities and live "a life like ours." Let's add this extra step to ensure, and not reverse, progress. Harrison is chair of the board of directors for The Arc of the Virginia Peninsula. Copyright © 2008, Newport News, Va., Daily Press
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