Think about it. Since there was an increase of 78% in children diagnosed with Autistic Spectrum and/or Developmental disabilities between 2002 and 2008, what is going to happen to all those children when they turn 21? I know a lot of special needs parents, both personally and professionally, who are raising at least one child with this diagnosis.
We still do not understand the cause of these diagnoses, let alone the reason for their dramatic increase. However, I’m not writing this article to address causal issues.
I’m writing this article because I am aware of a societal problem that we need to address, preferably sooner than later. The fact is that a huge amount of children are now being diagnosed on this spectrum. We are providing more services to address this problem for children up to the age of 21. We also have some services in place, and more in New Jersey than a lot of states, for people with this diagnosis over the age of 21. However, services fall off sharply after this age, especially mental health services.
I have a friend whose son, age 28, has recently struggled with very serious issues around sexuality. She says he is 28, but has the mind of about a 5 year old, and he has started struggling to contain his sexual feelings in appropriate ways. Like many vulnerable children, he was touched inappropriately when he was young, by another child with similar issues. Recently he has been engaging in similarly inappropriate behavior of his own. His mother lives in terror that he will cross a serious boundary one day. But of course the resources for prevention are slim to none. She says if he were younger than 21 he would have easy and ready access to psychiatric help. But since he is older than that, she has had to fight the system tooth and nail to get an appointment with a psychiatrist that is covered by his insurance. The appointment is two months away and it will take at least two hours to get there, and that is only for an evaluation.
A client’s son is 37, but he has the mind of about a 12 year old. He lives in a supervised apartment. The Department of Developmental Disabilities says he cannot take medication on his own until a Nurse Practitioner gives him clearance. Until then, his residential supervisors are supposed to give him his medication, but they only hand it out during specific hours. These hours are when he is at work. It took his mother 4 months to get the Nurse Practitioner to do an evaluation and agree that her son is capable of taking his own medication. When he finally came, he said that the paperwork only specified an over the counter medication, not her son’s anti-depressant and it would take him months to come back to approve that medicine. But, he said that he would be retired by then and the state was not replacing his position but sharing it with the Nurse Practitioner from another county, who, of course, is already swamped.
We are lucky in New Jersey that we have these services at all. it’s just that we need more. For-example in the first story, the Division of Vocational Rehabilitation Services found my friend’s son a job and Access Link picks him up daily to take him there. But, she says, there are no aides on the bus. The system says that if an aide is needed the individual must be too compromised to take the bus. His mother knows that it would be far worse for her son’s mental health if he stayed home every day but she equally knows that an aide on the bus whose job it was to prevent inappropriate behavior would be enormously helpful. She is grateful for the help she does get, but she simply needs more.
Both mothers in these stories fight and fight and fight for their son’s best interests. The truth is almost all the parents I know do the same thing. But the difference is for parents of moderately to severely disabled children, there is no end in sight, no expectation that one day their children will be able to take care of themselves, maybe even their parents.
These parents are the unsung heroes of our times. They have been heroes in every era, of course, but with such a significant rise in these problems in the last few decades these heroes are in our midst more and more.
As parents we all worry about what would become of our children if we weren’t there. We get term life insurance, find guardians and pray we will live long enough to see our children become self sufficient. What about all the parents who know this will never happen? As a culture we need to step up to the proverbial plate, by advocating and legislating, so that parents of disabled children can rest a little easier, knowing and trusting, that their adult children will be truly well cared for the rest of their days.