Advice for parents of children with profound autism nearing end of school-based services

This is a post by Kimberlee Rutan McCafferty, author and mother to two sons on the autism spectrum. She is also the author of the blog, Autism-Mommy Therapist. 

My profoundly autistic son, Justin, 21, graduated in June from the private autism school he has attended since he was seven. 

To say I was in denial is an understatement. The only reason I was not fully in the fetal position as we approached the proverbial “autism cliff” that many autistic adults head over upon reaching their true majority? Over many years of planning, I successfully put many supports into place for him. It was a lot of hard work, particularly in the last two years.

I thought him turning 18 entailed a lot of details, with guardianship, revamping our wills and legal documents which sorely needed attention, figuring out the quagmire of SSI and Medicaid, etc. We had the guidance of our wonderful special needs attorney. Although government documents are not my thing, my husband and I figured it all out with her guidance, and I felt I reasonably understood it all. We moved on. 

I thought we’d done the hard part.

But then as Justin approached his 19th birthday, I reached out to both his private school and his case manager at his home school district, and I got a daunting list of things that still needed to be done:

• There would be an application to the state Division of Developmental Disabilities (DDD), the government entity which takes over after school-based disability services ends. 
• There would be their intensive New Jersey Comprehensive Assessment Tool (NJCAT), the interview which would determine my son’s future services and budget as he moved into adulthood. 
• I would have to choose a service coordination agency which would help me create an Individualized Service Plan (ISP), a personalized plan of specific services and supports he would receive through state-based services (similar to how an IEP serves students in school) and guide me in choosing an adult day program.
• And finally, I would have to select said adult day program.

Of course, I would also have to wait for him to be accepted for services and hope there was no waiting list.

As always, I turned to my amazing circle of autism mom friends, many of whom have older children than mine and had been through all of this already. Based on them, my service coordinators, case manager and some rolling up the sleeves, here is some of the best advice I can offer to other parents/caregivers with children with profound autism nearing graduation out of school-based services. 

5 tips for parents of children with profound autism nearing end of school-based services

1. Build your circle of friends with autistic kids. If you haven’t already done so, do it and make sure a few of them have kids older than yours. I would have been lost without their guidance, particularly in this post-Covid world. You need your support group who went through this or are going through this. 
2. Get referrals from your circle. Specifically find out from them: 
   • How they like their support coordination agencies that took over from the schools and helped them navigate the adult world. 
   • Their actual service coordinators. You want a great one. The guidance I got from our service coordinator helped me choose an incredibly knowledgeable agency which made the creation of Justin’s ISP and his transition into the adult world run smoothly. I picked my agency due to the initial agent’s ability to answer my voluminous questions and her responsiveness -- two of the most important qualities I required in an agent. I would recommend her in a heartbeat if anyone local asked.
3. Ask your current service coordinator for connections and support. A few months after Justin turned 19, I turned to PerformCare, New Jersey’s contracted system administrator (CSA) responsible for providing service delivery to eligible children with behavioral health challenges, developmental disabilities and/or substance use treatment needs. I requested some in-home applied behavioral analysis (ABA) to help him with daily living skills. My coordinator put me in touch with a colleague who personally reviewed all of Justin’s documents for his DDD application and then who personally turned them in for me. This expedited matters and made certain that his application was complete. Note: I had to find his initial diagnosis from sixteen years prior, save everything.
4. Practice for any interviews that will determine adult eligibility for services. The NJCAT is a 30 to 40 minute, face-to-face (which was done virtually), rapid-fire interview. A facilitator uses a computer to access the assessment and asks questions out loud, recording your responses. While there are sample assessments online, a friend helped me prepare to answer in real-time. Having an idea of what I would be asked was a huge help. Among them were questions about Justin’s behavior and his daily living skills. The most important thing my friends told me regarding the NJCAT, was to truthfully answer each question regarding his level of independence as if it was his worst possible day. This is not the time to brag about your child’s accomplishments. 
5. If adult day programs are in your future, start reaching out to them two years before graduation. I figured this out on my own. When Justin turned 19, I took it upon myself to research adult day programs so I could see them myself well ahead of his graduation, mostly to rule out those that would not be a fit for him. I am so glad I did. Here’s why:
   • It took months just to get emails returned about visiting these programs. After eight months of reaching out, I had only seen four of them. I knew I’d have to go back the following year with him so they could observe him, but at least I got to take a few off the table. 
   • I began the formal process four months after he turned 20. We were just finishing up weeks after his 21st birthday. Some programs require multiple observations- one agency required four. This is difficult to navigate with your child in school and with working parents. 

Thanks to the above, my son will be attending a wonderful day program five days a week run by young women who are passionate to see the program succeed because their own brother is a participant. With him firmly secured there, now I can focus on the fun stuff: him resuming horseback riding on Saturdays like he did before Covid and planning an Autism on the Seas cruise in the next two years. 

Read more from Kim:

• My son with profound autism showed me he can thrive away from home
• Realizing I need help with my autistic son's high support needs