Children who have developmental disabilities such as autism are eligible to receive important educational and social services provided by their state. However, as these children transition into adulthood, they must adjust to an entirely different support system. Watch this video to see how the resources available to DJ, who was diagnosed with autism in childhood, changed as he became an adult.
1. How did DJ’s family provide for his unique needs during childhood?
2. What did DJ’s family have to do to provide DJ with a suitable support system when he became an adult?
Were you a movie star? Yes. You were a movie star? I smile automatically when I think about my son DJ. He’s got a wonderful spirit. It’s incredibly warm. He’s a very creative, interesting, and caring person with a lot of personal drive. The other thing that may surprise people when you think about an individual with autism is that he’s got enormous ambition. And he’s got big aspirations for his life. And that’s pretty exciting. He’s passionate about changing the world. I mean, he-…he’ll talk about wanting to spread kindness. I think that passion translates into more direct goals such as him wanting to change the way people perceive individuals with autism. What do you think, DJ? DJ was diagnosed when he was three years old. And at the same time that we kind of identified him as having a form of autism spectrum disorder, we became familiar with a, a model called the DIR Floortime Model. What that is is, it really looks at each individual in terms of their constellation of strengths first. And challenges. And that drives the educational intervention. Or the clinical intervention. DJ was a participant in his local community public school from the age of seven on. And in working with our local school district, we fashioned a program that really met DJ’s needs. So in part when he was younger he had part-time homeschooling. And then part-time schooling at school. And that increased over time as his ability to kind of stay regulated with the kind of sensory intensity that the public school presented. We also had one-to-one supports for him. IDEA provides an entitlement, that each individual with Individualized Educational Plan be the recipient of an individualized education. And all the services that that means. It provides for special educators. It provides for speech and language help. Physical therapy help if it’s warranted. Occupational therapy. So it provides for a pretty intensive service delivery. And at no charge to the family. That carries somebody through the school system to the age of 22 in our state; 21 in other states. From that kind of magic age forward, the principles of IDEA, which really are wonderfully democratic and individualized, kind of drop away. When somebody ages out at 21 or 22 depending on what state you’re in, you go from entitlement and a very full wholehearted entitlement system in your educational years to a very spotty state system. That, number one, has to re-qualify you again; and their criteria’s different by state. And the program dollars are different by state. To me, the loss of community for the individual and the family is really, really devastating. You know, you belong to your local school and your local community. And that’s where you’ve gotten services. That’s where you have an identity. That’s where your families know one another. And then all of a sudden you belong to a state agency. All the money in the world, it doesn’t buy you community. At the age of 17, I started looking around for what steps, what opportunities were next. So in our local public school in our local community, he had a very rich personal and educated life that was filled with people he cared about. And interesting challenges. And learning. And that was what I wanted to see continued into his future, as any parent wants for the future of their child, son or daughter. And so I began looking around at what DJ’s opportunities were. There was nothing that I would consider engaging DJ’s next steps after his life at the high school. There were a few programs outside of our state that had some really compelling features. But they were outside of our state. And that was not something that we as a family could live with. I’ll be brave; I need to smush it. You can make some guacamole. What about this? Ah, there we go. By that time I had been talking to a number of different parents who were similarly engaged and looking at next steps for their sons and daughters. And we decided we needed to go ahead and create a local program. A local solution that would support our children over their lifespan to have bright futures. And that’s why we started building 3L Place. Thank you. First and foremost, we are about serving adults with developmental disabilities to lead meaningful lives in the community. We’re interested in supporting adults over their lifespan. So beginning from their transition away from home into middle age and beyond, we’re about creating best practices — be it curriculum, models, content — that can stand up to the evaluation of research. And then finally we’re committed to sharing all of this information, all of this experience, with others. For the purposes of replication. My hopes for my son are very similar to my hopes for my daughter. Which are to find a life with really satisfying things to do. To be engaged with people you really care about. To be kind. And to make a difference in the world.