One of the biggest questions parents of special needs children may have is, "What is going to happen to my child when he's an adult? What will happen when I die?" Parents have to begin planning while their child is very young for options for when they can no longer care for their disabled child.
Whether it comes because their child becomes more than they can handle or because their child is no longer safe in their home, it is a difficult task finding a placement in a group home, independent living situation, or treatment facility.
Many times APPROPRIATE options just don't exist. Desperate parents take what is offered to them because oftentimes they have no other choices; there is literally one placement available. And since it takes a long time for a person with autism to acclimate and transition to a new living situation, they often don't know if the placement will work out for a while. And if it doesn't? Back on a waiting list they go. If they are lucky, they might find someplace in a few months to years.
Just when you think we've come a long way in terms of treatment of autistic and mentally ill teens and adults, stories come out about inhumane treatment. In two recent cases, it has become clear that parents need better options and staff need better training. In Nova Scotia, a 20-year-old with autism was confined to a room for 15 days, often without access to a washroom and often had to use a corner of his room to urinate. In the Netherlands, an 18-year-old with mental illness had been tethered to walls, restricted for the safety of himself and others around him. Both men have a history of aggression and violent outbursts. The staff were trying to keep themselves (and the men) safe. But is it going too far? Are their better options? Is this restraint and confinement really necessary?
The first thing I thought of when I heard of these, and other, stories is that they are being treated like animals. This is NOT OK with me. I have a child with special needs significant enough that it is most likely he will ALWAYS need care. While my husband and I have begun planning for what will happen in the event of our death, the truth is we still don't know where he'll end up.
The best case scenario for our family is that he will live in his own home for as long as possible, possibly well into adulthood. We DO NOT want him to live in a facility, shut away from the outside world. We also don't know what he will be like in 13 years when he ages out of the school system. Since we are currently dealing with massive tantrums and self-injurious behavior (he bites himself) and we hope that improves in the very near future, we are also being honest with ourselves. Our child is freakishly strong. What if it gets to the point where we cannot handle him physically ourselves? We plan to do our best, to do anything necessary to keep him home. But when we are gone, is it fair to ask our family or his brother to take care of him?
Cases like these highlight the need for better options for adult care for persons with disabilities. There is often little to no support in the home. Insurance and government agencies prefer to put disabled adults into full-time care for several reasons: they feel it is cheaper, safer, and more efficient. But I have problems with that. Disabled adults belong in public, out in society, contributing in any way they can. They are human beings and people need to see they exist. In some countries, particularly those in parts of Asia and Eastern Europe, adults (and often children) with disabilities are hidden away from society, placed in horrible institutions with minimum care and horrific living conditions. They become forgotten by their communities. They are warehoused. There is no infrastructure to care for them. There are often no options available to families. NONE.
We can do better. We can do much better. And we need to vow to do better.
How would you feel if this happened to your child?
Image via Marj Hatzell