Friday, November 21, 2008

Can't We Do Better?

I attended a meeting this week at the day support facility for my oldest daughter, Jessica. Jessica is going to be 18 years old in just a couple of weeks, and after school and on school holidays she attends a program at one of our local facilities that specializes in day support for people with cognitive disabilities.

Jessica has been at this particular facility for six years, and prior to that, she spent 2 years at a similar program run by another disability-focused entity. If you do the math, you will see that she started in these programs when she was 10 years old, an age where most children of the same age are attending daycare facilities after school and during school holidays. However, because of Jessica’s aggressive tendencies, no traditional daycare facility would agree to accommodate her.

I’ve never cared for the day support programs, but as a working single parent, my options were limited. The first program Jessica attended was staffed by low-paid workers, most of whom had little to no experience in relating to people with cognitive disabilities. The facility itself was gloomy and dark, and the ‘clients’ (the name for the children who attended the program) would sit around doing little for most of the day. Homework help was nonexistent, and even though plans of care were developed for each child, they usually were not followed. The atmosphere was so depressing that I hated sending Jessica there each day. A depressing environment was definitely not what she needed.

After the first facility, Jessica moved to the only other program in our area, the one that she is currently attending. While the staff at the second program is slightly better trained, the feeling I get when walking in to the facility is not positive. The rooms are small and crowded, and the furnishings are old. The look is not what one would find in a mainstream daycare facility, but rather gives the impression that the people in charge think appearance will not matter to their ‘clients’.

Since all the ‘clients’ have significant cognitive issues, and many have significant behavior issues, I have to wonder how Jessica, and all the other children for that matter, will have positive behaviors and habits modeled. While observing during my meeting, I saw older teenaged clients being handed crayons for coloring. I saw those same clients throwing the crayons across the room. I saw Jessica trying to flirt with a boy about her same age, but her flirting led to inappropriate touching and language. The staff person merely pulled Jessica away from the boy. I saw a young man with Autism rocking back and forth and moaning. The staff person sat right next to him and did nothing. Then a young girl, probably about 13 or 14 years old, came running through the room, naked and touching herself. Many of the other clients laughed, and even one staff person laughed with them.

I have been searching for years for a program that will be a good match for Jessica, both now and in the future. So far, I have found nothing in my city. I realize that caring for and supporting children with significant challenges is not easy, but there has to be something better. Our service delivery systems are doing a rotten job, and I don’t know what to do to change it. Just today in the news, my state’s legislature announced it was going to look to cut social service programs to balance the budget. If that happens, the bad is going to get even worse, and our children and adults with cognitive disabilities will continue to have bleak futures.


MMC said...

That really sucks. You think we would all be able to do better.

I have to wonder if part of the problem isn't that people whose lives and families aren't touched by disability don't realize how bad it sometimes really is. They just assume that *those people* are taken care of. And some would say that even if they knew, they still wouldn't care.

I sure don't know the answer but I do know that it seems like the only thing that has ever made a difference in the lives of individuals with disabilities is when parents/family members band together and make something change. And never give up. As if we aren't stretched and exhausted enough.

Still, I have to wonder what effect a TV news crew filming those scenes would have on the general public? If it's not good enough for our typical kids how can it possibly be good enough for any of our children?

Anonymous said...

Jessica is a beautiful girl. Well, one would think we all could do better. Here there are no programs like you have. It sounds like it could use a major makeover. Maybe they could have those shows on TLC go to places like that and spruce them up. Ah, if everything was only that easy.