Texas policies create years of “stay-at-home” orders for people with intellectual and developmental disabilities
By Tom Laign
It’s my pleasure to serve as president for The Arc of El Paso, where the recent surge in COVID-19 cases has given us reason to pause our activities as we re-evaluate the safety of our families and loved ones, and the greater El Paso community.
That’s one of the reasons why the decision was made to temporarily close our office for a few weeks to reflect the recent emergency order. The many and at times confusing emergency orders and recent curfew have led to debate in our community as to the need for these.
I write not to take a side in that debate, but to ask you to consider that the restrictions imposed by these emergency orders and curfew might give you a glimpse into the everyday reality for individuals with intellectual and developmental disabilities.
The isolation and frustration that some may feel as a result of these emergency orders and curfew is part of everyday life for many individuals with intellectual and developmental disabilities. They felt this isolation before COVID-19, and many will experience this isolation after COVID-19 is a memory.
This isolation often grows when a person graduates from high school and is no longer eligible to receive special education services. Boredom and frustration become part of life.
While their parents would want to provide for their adult child just like any parents would help their recently graduated high school student, the cost can be astronomical. The specialized services and supports their child may need can inch up to $100,000 per year, and in some circumstances, even more.
That’s a lot to pay out-of-pocket, even for somebody making top wages in El Paso, and this is why virtually all families rely on Medicaid waiver programs to cover the costs.
Medicaid waiver programs and Medicaid are not the same thing. While both are programs administered by Texas for Texans, Medicaid is a benefit that once you are determined eligible to receive, is given fairly quickly.
Medicaid waiver programs, on the other hand, can take 12 to 15 years to receive. It would be like going to your neighborhood elementary school to enroll your child in kindergarten and to be told your child will receive kindergarten instruction in 12 to 15 years.
You would be frustrated if you heard that from any school district, which of course you wouldn’t. You might try to win a seat on the school board, or you might go to the news media, contact the governor, your representative, or senator. You would fight this injustice because your child deserves so much more.
Individuals with intellectual and developmental disabilities, whether they be school-age or adults, also deserve so much more. I wish I could tell you that I thought Texas cared for people with intellectual and developmental disabilities, but when waiting lists have numbers well over 50,000 and it takes more than 12 years to reach the top, the numbers tell me otherwise.
If you went to a hair salon or barber shop and found out you were number 50,000 on the waiting list, would you stay or walk out? I know I would walk out because I have the luxury to walk out. I’m thinking you would have this same luxury, too.
Texans with intellectual and developmental disabilities don’t have the luxury to walk away from their Medicaid waiver waiting list, nor do their families. The only choice for these people is to stay at home in isolation from their community as they wait more than a decade for their number to be called, as boredom and frustration sets in.
I know Texas can do much better to meet the needs of people with intellectual and developmental disabilities. As Texas responds to COVID-19, and your life and the life of your family moves from isolation during stay-at-home and then returns to normal, please remember there are Texans living nearby who because of the circumstances of their birth. With the lack of support from the state they call home, they have few options but to stay at home for the next twelve to fifteen years.
The Arc of El Paso builds an equitable, just and strong community, acting as a hub for individuals with intellectual and developmental disabilities and their families through delivery of services and education. We fight to resolve injustices like this 12 to 15 year waiting list.
Tom Laign is president of the Arc of El Paso is Tom Laign. He previously served as transition services coordinator for the Socorro Independent School District.
Cover photo: The Arc of El Paso offers a variety of activities, such as this Labor Day party in 2019, for people with intellectual and developmental disabilities. (Photo courtesy of The Arc of El Paso)