Mom encourages parents to shop around when considering adult service providersBy Kimberlee Rutan McCafferty
This is a post by Kimberlee Rutan McCafferty, mother to two sons on the autism spectrum and an Autism Family Partner at the Children’s Hospital of Philadelphia (CHOP). Kim is also the author of a blog about her two children with autism. She is the author of Raising Autism: Surviving the Early Years available on Amazon
This past Monday I had the good fortune to attend an autism transition conference with a dear fellow autism-mom friend. I have to admit I wasn’t sure what to expect- would I be overwhelmed, or would most of the information be redundant since I’ve been watching a number of seminars from various organizations regarding this topic. I have to say at the end of the day I felt it had been a good investment of my money and time, in part due to the informed speakers (and in part due to the fabulous lunch buffet- food is important at these events). There was one huge reason to go however, and I encourage anyone with a child who’s fifteen or older to consider attending.
Honestly, just the vendors alone made it worth my time that day.
I don’t want to take away from the speakers who did a wonderful job both breaking down the mysteries and the intricacies of the DDD and explored long-term disability planning. The first workshop I attended truly explained the ins and outs of applying for DDD eligibility, both the timelines for applying and the different possible outcomes I could expect. The speakers also discussed the order in which I will have to apply for assistance for Justin and the measures I’ll have to take- first guardianship, then applying for SSI/Medicaid, then DDD eligibility. They also touched on the importance of a good support coordinator, and how crucial it is to check out possible daytime programs before committing my child to any of them. I also attended an excellent workshop on long-term disability planning, which confirmed that my husband and I have gone in the right direction in planning for Justin, and taught me some tips to keep in mind for future decisions.
Since I’m a planner, the two-and-a-half hours were well spent.
If I’m being perfectly honest however, the part of the event which made me feel incredibly optimistic about Justin’s future and dispelled a lot of my fears was meeting the vendors. In about five years I will start the process to select a support coordinator who will be instrumental in helping me acquire adult services for my son, including a day program, and perhaps even a few hours at a job site or volunteering. I felt like my friend and I met a number of people who cared passionately about what they do, and were eager to answer our questions. I will tell you that we soon streamlined our “opening bit” with all of them, first by telling them we lived in central Jersey in case they didn’t service our area, and also letting them know our boys were on the more severe end of the spectrum.
This saved us from wasting time with agencies who only worked with clients in the north or south or high-functioning adults, and allowed us to really focus on those who could work with our sons. One of the pieces of information we learned at the first workshop is that certain agencies are allowed to skip the final approval process with the DDD, this speeding up the onset of services as our sons aged out of their educational entitlement. I have heard that some families wait until up to six months after graduation for adult services to start, and I know I personally would like to fill that gap as soon as possible since my son likes to be out and about in the community.
We even met one support coordination agency who only permitted their employees to service clients within the county in which they lived so they would be on top of all the best opportunities for them, which I felt was a fantastic idea. I encountered one who already worked with my son’s school, and one so enthusiastic about what they do they’d emailed me thanking me for my time before the day even ended.
I enjoy that kind of service.
The other reason meeting the vendors was so great was that I got to talk to different agencies who handle day programs for autistic adults and other adults with disabilities, and had the opportunity to really get a feel for what a day in the adult world might look like for my son. I was able to talk to several who had facilities in our area, and was again struck by the enthusiasm with which they spoke about their jobs, their activities, and the adults with whom they worked. As I am convinced a daily program will be best for Justin, this put many of my “oh God the cliff is coming” fears to rest.
And yes, those fears are daunting- anything I can do to ameliorate them is fine by me.
All in all, I really recommend listening to the Autism Speak’s webinar on transition, and/or attending a transition conference for anyone whose child is approaching the age of twenty-one. It was both informative and reassuring to see how many different agencies are working in New Jersey to provide fulfilling lives for our kids who are aging into adulthood. I’ve saved every flier (and made notes, I’ll never remember all I learned five years from now), and I feel better prepared to meet the challenge of creating a safe, productive, and happy life for my son.
In the end, there’s nothing more important than that.