Saturday, November 15, 2008

"Ignoring God's Children"

Op-Ed: "Ignoring God's Children"
The Dallas News
12:00 AM CST on Saturday, November 15, 2008

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.

4 comments:

Eva and her 'rents said...

Wow. I'm grateful for what we have. Thank you for sharing this.

Tommy's mommy said...

Tearful eyes.

It seems like such an uphill battle to gain additional DD capacity. To end/reduce wait lists, increase mental health to families (we ALL need some, right?), create a medicad eligibility that considers working poor with a child w/diagnosis (instead of only income level), oh the list can go on.

Your post really hits home.

ellen charge said...

wow another case of what century we in part of me jsut thinks ur lucky you dotn live here its great but with our ression talks our governments do and that stupid min budget who knows how long things can last sydneys a mess no public transport stupid roads all i can say is wat century we in 21st or the 1st i think the first lol

Shannon and Carey said...

First of all, love Max's finger on the block. It's like an alarm! Too hilarious.

Amy,
This touches me as I used to be a Community Based Case Manager for a privately held company. I have so many mixed emotions about this subject. It is so true what the author, Clay, wrote. Texas makes families endure years on a wait list. 10 or more I believe. My honest opinion is to have the child remain at home with is family and to have home based services. I am speaking from my experience.
If ai can ever be of help, please email me for questions, Amy. I hope I can help.