If you talk to any special education lawyer or advocate, they will tell you that The Individuals with Disabilities Education Act is designed to prepare a student to graduate and move on to further education, independent living, or employment. Most families with children who have disabilities look at graduation as the time their child falls off the educational cliff.
Once a student graduates, the educational entitlements afforded by IDEA end. A student like Benjamin goes from an intensive therapeutic setting into the world of adult services with a fraction of what they’ve lived with and thrived on for their entire lives. Benjamin isn’t going to live independently. He’s not going to hold a job. He’s not really moving on to further education. The only thing to consider are adult day habilitation programs.
Prior to the Covid quarantine, we were touring programs for Benjamin. School and adult day hab programs are two very different things. There is much less staffing in adult programs and no one to one assistance. One program I looked into had 70 adults and one nurse on staff.
Clearly, this is not a safe or appropriate situation for Benjamin who needs a nurse to feed him through his feeding tube, administer medications, and monitor his daily seizures. There are “medical” programs, but for a social person like Benjamin these programs seem too restrictive and under-stimulating.
Just prior to the shut down, Benjamin was assessed and approved for private duty nursing, although we have yet to find out how many hours a week he can expect to one day receive.
I keep saying that Benjamin and his classmates didn’t fall off the educational cliff. They were given a hard shove and now they are falling into the nothingness of what comes next.
As of now, the adult day habilitation programs are still closed, but it doesn’t really matter to me when they open. As Benjamin’s neurologist said, “Benjamin’s not safe until there’s a vaccine.”
While I am a firm believer in looking at the positive, I will never stop talking about all the difficulties that exist for us.
Today, I would like to thank Laura Jarrett and Yon Pomrenze of CNN for spending some time with us and sharing a little bit of our story.