Q and A: Residential Care
Question: My husband and I are divorcing and I just can't seem to take
care of my handicapped son alone any longer, who do I talk to about placing him
in a long term home, I need help.
Thank you for your time.
Response:
It sounds like you are asking a simple question. One way to start the process is
to ask the social worker at your son's school about the resources and policies
in your area. Residential services vary a great deal from one state to another.
Sometimes there are long waiting lists that can take up to several years. You
may need an advocate or an attorney to help you unravel the red tape.
You may receive contradictory information.
The pendulum has swung back and forth on this issue. Before the advent of
federally mandated special education in the least restrictive environment,
parents were routinely counseled to “place” their children with severe
disabilities in institutions at an early age. Now families are supported and
urged to keep their child at home as long as possible. Indeed, if you don't
scream “ouch,” no one will tell you that there is any other option. Residential
care is expensive and not socially acceptable at this point in our society.
Nonetheless, sometimes it is absolutely necessary for the health and welfare of
families.
Since my son attends a residential program at the Devereux Foundation in West
Chester, Pennsylvania, many people ask me questions about residential
placements. I wish I didn’t have any answers. I wish I had no experience with
this. I wish my life had been simpler and easier. Indeed it was the hardest
thing I have ever had to do. My heart broke. Still it aches when I recount how
and why my son has lived away from me for the past 11 years. Tariq needs round
the clock care, and fortunately he has been able to get that from the kind
people at Devereux. Like you, after my divorce, it was clear that I could no
longer give it to him as much as I wanted him to live with me. It was a struggle
to get him this level of care, even though everyone who knew him thought that he
needed it.
Preparing for a child to leave home is the last phase of parenting. When a child
has the kind of disability that prevents him from living independently, this can
be an excruciating time for parents. Parents of young children who are newly
diagnosed worry about if and when the day will come that they will face
decisions such as the one you are about to act upon. For some people, it is hard
to get past the stereotypes of cold institutional life we have heard and read
about. Perhaps this is not an issue for you, but it may be for other readers who
have questions about residential placements for their children.
I would suggest that you also visit the facilities in your area and get an idea
of what is available. Most of all talk to other parents about their experiences.
You will need all the help and support you can muster, particularly from other
parents of children with similar conditions. I would also suggest that you
contact some disability organizations in your area.
In closing, while placing a child in a residential facility can be heart
breaking, it can ultimately be the best choice for a particular child or a
particular family. Readers with other questions on this topic are invited to
write in to this column in Special Child Magazine.
RN
