In August, our son Billy, who is a twin and autistic 19 year-old started a residential placement at a private school. It was the second most difficult decision that we have made in our lives, the first one placing Jon at 13. I am writing this to you to share our thoughts, not as a criticism to anyone, but to share why we chose a residential placement.
My wife and I have been wrestling with this for some time. There were several reasons why we thought Billy might be best served by a residential placement. We chose the school we did because they have been involved with him since he was 3 and really understand him. He is also familiar with the school and we know the pros and cons of its programming already. The strongest positive reasons are the following:
- Full time nursing and doctors on call
- Vocational opportunities after school in the community, they will introduce with a job coach along with jobs at school, such as janitorial and foodservice
- An environment filled with young eager BCBA interns who will be sure he is safe and has consistent structured programming
- The work the school can do on activities of daily living and other skills.
- Help with Bill’s dietary program and with medical appointments and tests. He needs to lose some weight, and we have diabetes in our family. Staff assistance with medical visits. Given Billy’s underlying behavior, the school staff has been more effective than we have been with our staff that we hire independently. He attended a phlebotomy lab with six staff. Bill pushed a chair through the new wall in their waiting room and the waiting room cleared out. Thankfully, all 6 teachers were able to assist and bring Billy into the lab and carefully restrain him using safe techniques while blood was drawn. A brutally difficult ordeal, one of many to come.
- The funding for the DESE-DDS program had really crashed. We don’t officially know exactly why our funding level was cut. Ours is literally about 20% of when we first started.
- The difficulty our provider agency is having finding dependable staff for respite, and the program was cut to 3 hours a week from about 20 from when we first started more than 10 years ago
- The inability for DDS and the school district to work with us to find other solutions.
We will still take Billy for weekend home visits. I think we made the correct choice, though it is heartbreaking nonetheless.