When It Comes To Full Time Placement

Wow, another long time between posts. I must do better.

I have a friend that has come to the point where she can no longer care for her child. This is not a particularly old child and would not be considered as an adult. However, my friend is experiencing all the pain and frustration that any parent would when deciding to look for outside help in living arrangements. So she says that she has no idea where to start

My suggestion was to first call the local or state Autism Society. They can be very helpful in locating possible institutions capable of caring for the child on a long term and full time basis. I hesitate to use the work institution because it has a negative connotation. Many states have private non-profit organizations that they use for placement. My son is placed with a very good organization in Maryland and oversees many homes that care for adults, with full time supervision (live-ins) doing the cleaning, cooking, and in the case of my son, personnel care like showering.

I suggested to my friend that she must decide on whether she wants her child to be close enough to visit often or at a distance. This is a hard decision as there may be few local care facilities. Again, we were lucky with Nathaniel as there were two good organizations close by. We did have a choice on two long distance facilities (about 2 hours and 5 hours away}, but we did not want that distance and we were pleased with the care provided locally. She also needs to find out what that care will cost. Maryland provides for everything (thus it's hard to place an adult!), including a personal stipend for miscellaneous expenses like clothing and even airfare to visit us.

Finally, finding out who works for the organization is key to both your adult and for your own piece of mind. Shelley and I interviewed the care provider when we started - that's almost unheard of today and in most organizations. Still, meet with the care providers that are employed. This is your child and you want what is best for him/her.

It is a fact of life that this kind of decision is best made early in the adult's life. There will often be a waiting list and the sooner you are in the system, the better. This decision will not come easy Read more!

Our new health care bill

All parents of autistic children and adults should be extremely grateful to the new health care bill. The overhaul has made it possible for parents of autistic kids not to go broke trying to get the best treatments and care for them ("Health care law may help families with autism costs."). Quite different than in the 80's. Of course back then we didn't have treatment plans for our children. What we had was a choice of fighting it out with the city and state as to whether they would provide the education best suited for them, or to pick up part of the cost for institutionalizing them. I could never have imagined that my wife and I would do such a thing to Nathaniel, although we were presented with that choice. Many parents were, It was, in some cases, all that the parents could do. Now, with awareness of autism at a peak, and health care laws that cover autism, things are certainly better. Read more!

Mercury and vaccines

Generally I try to stay focused on autism in adults, but there is so much interest in mercury (Thimerosal) in vaccines that I wanted to share this article with you (A ban on mercury in vaccines). I am not convinced that autism is attributed to vaccines, at least not on its own, but it is still a good idea to remove mercury, a known toxin, from all vaccines world-wide, not just in the US. Leave it to the pharmaceutical industry to remove Thimerosal in vaccines in the US (FDA order) and not in vaccines for the rest of the world. Read more!

Parade Magazine for April 3

For us parents with autistic adults, isn't this what we fear the most (Parade Magazine, April 3). In one small way, Nathaniel was lucky. The cost to the state of MD was lower since there was more money to go to autistic kids back in the mid "90s when he entered the program. On the other hand, the facility in Austin, as mentioned in the article, and other facilities around the country didn't exist. Although Dana in many ways is like Nathaniel (no speech or communication, eye contact, full time care, cute as a button)he never has tried to communicate complex thoughts by other means like typing or pointing to pictures to convey needs.I will say again that planning has to start much more early that when your child reaches 18 or 21. Things that you don't even think about like estate planning (discretionary trusts) need to be talked through with family and, as you see, lawyers. Sad but true. Read more!