The following was sent by The Arc --
It is startling to see your life depicted on a television show, especially when that show is a top-rated crime drama. This week's episode of Law & Order, titled "Challenged," showcased the challenges facing millions of American families, including mine.
The plot revolved around Pete, a 47-year-old man with intellectual disabilities who had been sent to a state institution by his parents when he was only 3. Willowbrook, the real-life New York institution closed in 1987, was described as a "hell hole." Now living in a community home, Pete today enjoyed his unique group of friends, diverse caregivers and the respect of his employer.
This episode's moral dilemma questioned parents who willingly place a child with disabilities in a state institution. It bitterly, and quite accurately, described the immeasurable stress that disabilities bring to a family and the lack of support they receive.
The writers, however, made one mistake. Several times the dialogue referenced, "that's how things were done then," suggesting times have changed. For many families, things have hardly changed at all.
As the parents of 8-year-old identical twins with severe developmental disabilities, my wife and I have come face to face with this moral dilemma. Our pediatrician recently told us that we should "prepare to place them somewhere" in the next couple of years. In other words, he recommended we institutionalize our children.
This happened in 2008, not 1964. While many parents make this difficult decision, it does not come easy. As reported in The Dallas Morning News, all 11 Texas "state schools" for people with developmental disabilities are currently under investigation by the Department of Justice for alleged abuse.
Most families want to stay together. However, as shown on Law & Order, the physical, emotional and financial strain on a family without support can be insurmountable. Community-based services cost less than institutionalization, but Texas forces people with disabilities to endure waiting lists for nearly a decade before receiving help. Not surprisingly, for families who can no longer go it alone, there is no waiting required to place their child into our DOJ-investigated institutions.
With almost 100,000 people on waiting lists, and more citizens institutionalized than in any other state, Texas ranks among the worst five states in the nation for disability services. Collin County has the lowest per capita funding for people with developmental disabilities in Texas. In cruel irony, Plano was recently named the wealthiest city in the United States.
In other words, the most prosperous city in America is at the bottom of the bottom for helping God's children most in need.
The lack of adequate care for people with disabilities is pervasive. Earlier this week, local news aired video from a Dallas County school bus showing a driver choking a student with disabilities. While most professional caregivers are compassionate, abuse is not isolated to certain areas, just as it was not isolated to the 1960s.
Caring for people is a matter of choice. Our state lawmakers can choose to end the waiting lists, while the federal government can chose to provide funds to upgrade education, housing and employment options. Our schools can choose to improve staff training and provide quality programs and supports. Our churches can choose to respond to God's word and "treat with special honor" those he created differently.
While these choices are not cheap, the costs pale in comparison to the destruction of families who have no choice at all.
Clay Boatright is president of The Arc of Dallas, and serves on the board of directors for The Arc of Texas. Clay and his family live in Plano; his e-mail address is clay@jnine3.org.
Saturday, November 15, 2008
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4 comments:
A truly sad state of affairs.
You are to commended for the work you do with the mentally disabled. It is a gift that few are willing to give.
In the calculations, bumpkin, I have learned far more from the community than has been given.
Newt Gingrich did a short segment on NPR and praised several Republican Governors for the great work they've accomplished on the state level. One of those governors was from the State of Texas, a state that shortchanges its residents, but rewards business.
The genesis of what I have learned about the issues began with Michael Wilcox, an inspiration who patiently explained many of the surrounding matters, like why closing Fernald is important. On his blog, he has posted the position paper of the Obama/Biden campaign.
The greatest credit belongs to the Middleboro community for their outreach and warmth. What I have witnessed is a truly wonderful community for those who need the greatest patience and understanding --- and btw, move the slowest when you're in a hurry!
When we say it's time for change, this is a small part of it.
As a parent of a special child, I found this so distressing, I can't even comment.
A friend who regularly reads your posts sent this to me last week knowing my interest. Programs for this population are the last to be funded and the first to be cut. Institutionalization went out decades ago and Massachusetts has yet to fully implement the process. We need to do more, but the current Washington crowd ignores the population. I can't wait for Jan 20th!
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