Transition Checklist For a Different Adulthood

Jumping Over the Paperwork Hurdles

Photo by Wesley Tingey on Unsplash

When your child enters high school, it’s time for parents and teens to work together to prepare for adulthood. For our typical children, that’s when we begin learning about SAT scores and FAFSA forms. For our disabled kids, we still have to plan, but there’s a whole different checklist of chores.

Because my son is one of those borderline kids, I’m simultaneously planning for BOTH - a typical adulthood and a different adulthood. He might just need permanent support with food, housing, and fulfilling tasks to occupy his day. You never how things are going to shake out, so I like to have a Plan B. I wrote a little bit about my research efforts here.

Let’s just talk about the steps needed to prepare for “different adulthood” scenario today. I’m gong to breeze quickly through a lot of information in order to give the big picture. Later, I’ll drill down into topics like trusts and social security.

Five Steps on the Transition Checklist:

1. Hire a lawyer to get a special needs trust, a new will, and guardianship. Start this process in high school, and get it over with. A good lawyer will charge between $5,000 - $10,000 for these tasks. Don’t go cheap. Our first lawyer was a bargain for a reason; he took a few thousands dollars and created a terrible document that had to be redone. Make sure that you hire a lawyer that specializes in special needs issues. Then keep the lawyer around in case you need help with school issues going forward. Everybody should do this, even parents of high functioning children; we have guardianship because our son could end up in the hospital after a bad epileptic seizure.

2. Drain you child’s bank account and put all the money into a separate bank account under your name. To receive government support, he cannot have more than $2,000 in his name anywhere, including in that special needs trust.

3. Start the paperwork for social security around age 18. It takes a year to get through the process, but it’s mostly a lot of little steps with long wait periods between tasks. The hardest part of the process is filling out a twenty-page questionnaire asking you to describe your child’s functional level. Answer the form thinking about them on their worst day and give lots of details. I showed my responses to a social worker before sending it in. At the end of the process, your child will get about $600 per month, and more importantly, it will trigger him for Medicaid and for significant supports from from the state.

4. Then Medicaid and State Bureaucracies. Once Social Security is completed, your children will automatically qualify for Medicaid. You don’t have to use it, but that’s an important prerequisite to qualify for state benefits. Here in New Jersey, I need to get Ian processed by at least two bureaucracies before he’s 21. I’m currently working through the paperwork for DVRS and DDD. Every state has their equivalent.

5. Research transition schools and programs. After high school, any student with an IEP, who did not accept the formal graduation transcript, must still be educated by the school district or sent to a private program to help them transition to adulthood. Because education was so seriously disrupted for students with disabilities, New Jersey said that schools must do this task until 22, so my son gets another year. Even if your child spent their whole lives in private programs, public schools are still responsible for them from age 18-21. Take it!!!! Your school might offer a great program, but there might be something better out there, so you have to do your research just the same way as a typical parent visits colleges.

Bonus: Here’s a snapshot of my research efforts when I was in the thick of things last year.

Down the Rabbit Hole