This summer, readers of The Post learned about the horrible conditions in which twin 22-year-old autistic men were kept in their parents’ Rockville home. It is easy to blame the parents, but it’s not entirely their fault. Publicly funded services for the disabled are substantially reduced when they reach age 18 and are virtually eliminated, beyond personal and medical care, at age 21.
What happened to the Rockville family is heart-wrenching. The parents would not be in trouble if they had simply turned the children out on the street. Their legal obligation to care for them ended when the twins turned 18. But options for full-time, residential care are limited. In-home, round-the-clock care is prohibitively expensive for most families. The waiting list for services for the disabled can stretch to many years, if they are available at all, as I experienced with my son, who has autism.
The Maryland Medicaid waiver program, once you finally get your name on the list, is a generous program, but it is like throwing an on/off switch. My family received no state-funded services until our son got off the waiting list. Then he got very generous services through the waiver program, which basically means the government began paying for what my wife and I previously paid. The catch is that many service providers do not accept Medicaid reimbursements because the rates are low, the procedures are onerous and the reimbursements are delayed.
As a lawyer in Montgomery County, I handle a great many cases involving disabled children and adults, and even I frequently get confused by the process. Imagine an average parent trying to navigate the disjointed system that exists.
Advocates for the disabled did harm to the provision of needed services for highly disabled persons. That advocacy has led to the closure of most residential institutions in Maryland that would care for disabled adults, leaving these people to compete for one of the few programs that remain, live on the street or remain with parents who do what they can in a virtually impossible situation.
I have seen the desperation of parents of special-needs children as they struggle with great demands and few services. This occurs at a great cost to families, and to society. I have seen situations in which parents deliberately had themselves classified as abusive and neglectful to push their children to the head of the line for services.
This horrible tragedy may have a silver lining. The Rockville twins are now receiving the services they should have been getting a long time ago. If the government had provided these obviously needed services in a timely manner, would these parents now be in handcuffs?
I am as horrified as anyone else at the squalor in which the twins were found. I am not an apologist for the parents or for the choices they made. But perhaps it is time to look at what government assistance can be provided to parents of special-needs children as they transition to adulthood to prevent the bizarre situation in which it takes the arrest of the parents to get children the services they need.
The writer is a lawyer.
Read more about this issue: