Exposing the those terrible holes and those who cover them up

This week in the NYTimes , another in a series of articles about criminal conditions in state-run homes caring for developmentally disabled children and adults makes the conditions at Abu Ghraib look like sunday school camp.



Even if you do not hire the lowest of all possible scum of the earth as direct care providers, even if you try to train them and support them, even if you try to pay them more that you can afford, still, the challenges in caring for people with disabilities like severe autism can be overwhelming.

To those who say that all of these problems would be solved if these disabled individuals were cared for at home I say, “Come and stay with me for a weekend “!   I can handle my daughter when she is healthy and happy; but, still, it is exhausting for us in our 60’s to be running around providing her with constant activity and exercise. And when she is stressed and ill or in pain, her behavior is not so easily dealt with. I empathize with those care workers who end up overwhelmed and quit after a few days. I would rather they admit it up front than have them lose control and physically abuse her out of frustration.

Memorial Day weekend my husband and I decided to take a weekend off and go fishing. I was assured by the agency that manages our daughter’s house that staffing was good and that we should enjoy ourselves. When we came out of the woods and in cell phone range again I called and was informed that the police had been called for her behavior twice over the weekend. ( I will get into that issue later).

When I picked her up her mouth was swollen and she had multiple sores inside and on her tongue. She could barely eat and was exhausted. I also noticed a large abrasion on her forehead. I was told by the supervisor that this was all self-inflicted.

At one point during her 3 days of sleeping and eating at home she became very aggressive and self-injurious, hitting herself in the face and coming at us with outstretched hands to grab and head-butt and bite. We used our time-tested methods to calm her down, (I hide in the bathroom and my husband calmly asks her to stop and sit quietly), the episode de-escalated after about 10 minutes. It was apparent that she had been hungry and unable to deal with my husband telling her that no, it was too late to eat.

Maybe that gives you some idea?

The next day and in the days since, she has been a smiling and cooperative fun-loving angel.

Now, because she is unable to speak and has limited means of communication, I must depend on the reports given me by the supervisors that her behaviors over Memorial Day weekend were unprovoked, out of the blue and all injuries were self-inflicted. Quite possibly this is true.

Read the article in the NYT and see the videos and then imagine how unsure I am that this is absolutely true.

There are terrible holes in our systems of support for those in our society unable to care for themselves. It is too easy to cover them up by lying, neglect or omission and to disregard the families complaints as over protective or irrelevant. We need to dig around these holes and rebuild the structure rather than layer over them. The old system needs to be completely replaced by a new, inclusive, community based and fully integrated and self-directed system with full transparency and accountability.


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