Monday, March 10, 2014

Systems That Don't Work Together For People with Autism

If you are a parent of an adult child with autism you realize a lot of the systems you work with don't mesh correctly. I think the correct terminology is 'link' or 'linkage', or at least that is the terminology I hear people use. In the last posts I have been talking about the things we have done to be able to get Dominoe another job. She has a job making $8.00 an hour doing janitorial work. This is basically cleaning the lunch room and bathrooms. That is the same work she did at Burger Kind and Taco Bell years ago. She has done very well but is ready to exit from the services at Louisiana Rehabilitation Services (LRS). Her waiver is supposed to be available for the extended follow along services. At LRS follow along is basically a supervisory type service that checks to see if things are going ok. It is also used to provide more training or do problem solving if there are issues. With the waiver the extended follow along seems to be more of a function of the job coach or at least that is what it appears to be. With the waiver there are 24 days of extended follow along a year. The code is the same code as would be used for the job coach. Although things are going well I would like to access the extended follow along through the waiver. I, maybe right or wrong, believe that the company would be more likely to keep Dominoe if there were re-occurring resources. You cannot get the job coach and the direct support person/DSP/aide. We have built Dominoe's services around her behavior. The easy solution is to have both people work for the agency that supplies the DSP and the agency that supplies the job services. Except that there are four to five staff that would have to be trained for 24 days a year. My question was then is the job coach/follow along going to tend to behavioral needs or physical needs? Of course the answer is no. At this point I'm stumped and in the process of going up the chain of command through the Department of Health and Hospitals to find out if this is true. I realize this is requires a very fine understanding of how both systems work. I also believe these differences is why most families with a child with a significant disability like autism just give up on employment. Does any one else have experience with this?