Since my daughter graduated from OASIS, the autism support program at Pace University, Samantha has been mostly unemployed. As her mom and advocate, I’ve usually been able to help her keep moving forward on a productive path toward greater independence, but not lately. In some ways, I feel like I’ve stumbled into a Kafka story, blindfolded and forced to play a surreal game of pin-the-tail-on-the-donkey, along with a lot of other unhappy, blindfolded autism parents.
Sometimes I feel like the donkey has disappeared, and all of us are wandering around a room without walls, trying to pin our tails on whatever slender strands of support we can find dangling in the air. Then I remind myself that I’m the warrior mom, the tireless advocate who always asks: How can I find a better way?
To answer that question, I decided to explore Self-Direction, a service model that empowers parents to decide how to spend their Medicaid funds independently. Instead of relying on an agency program supervisor—to help find and oversee life skills supported employment programs and housing issues—I could create an individual program for Samantha. Under Self-Direction, my daughter would have a budget that could be spent on things like: community classes, gym membership, transportation, a personal job coach, housekeeping, and even a live-in caregiver or paid neighbor. In addition, Samantha would be eligible for adult summer camp (?!), therapeutic horseback riding, music and art therapy and someone to help with hiring, scheduling, supervising and billing for support staff. (!!!)
Could I go from Kafka dreams to Autism Utopia? As I listened to Laurie Yankowitz, Vice President, Individual Supports, for HeartShare Human Services of New York, I couldn’t help thinking: Self-direction sounds too good to be true. If this cornucopia of services exists, why didn’t my Medicaid Service Coordinator at The Shield suggest the option? Answer: The Shield Agency doesn’t offer this service or have brokers who are familiar with it.
I was lucky enough to learn about Self-Direction from Laurie Yankowitz, member of the Board of Directors of DreamStreet Theater Group for adults with disabilities. While Samantha was in a rehearsal for her upcoming performances, Yankowitz was kind enough to meet with 8 parents of cast members to explain this service option. Thank you, Laurie, for going the extra mile.
Before parents can take the plunge into a self-directed program, an assessment of our kids’ needs (a Developmental Disabilities Profile, aka “DDP2”) must be made in order for the state to determine a budget. Adaptive behavior, health, age and your geographical location are used to calculate a “budget template.” An MSC can make this assessment by interviewing a parent.
Hint to parents: Tell the truth, but be sure to describe your son or daughter on their very worst day. Also involved in the process is a support broker who helps parents create and submit their budget to DDRO. Then a Fiduciary Intermediary watches the budgets and receives time sheets. There are also four meetings a year with your “team” to review progress and monitor the way funds are being used.
Clearly, there’s a LOT of information for parents to absorb. After two hours of listening, taking notes and reading a hand-out, I had consumed more than enough “self-direction” to digest. For Samantha, self-direction sounds like a no-brainer, an obvious improvement over her current situation. After all, what could be WORSE than a year of receiving almost nothing –minimal job support and only six weeks of life skills help from “direct service providers” who had a week of training and no college degree?
With Self-Direction, I could at least hire a college student who’d taken courses in education and psychology. And wouldn’t it be WONDERFUL if Self-Direction really paid for Samantha’s acting and voice lessons? Honestly, I’m afraid to hope.
I can’t help thinking the benefits promised by Self-Direction are a mirage that will disappear the moment I approach it. Nevertheless, I must begin to move forward. Somehow I will find parents of young adults like Samantha, who are a few steps ahead of me, and see how they are faring with Self-Direction.
Is it possible parents end up with a reasonable budget to support their children? Or does the process get bogged down by endless paperwork? Or maybe some of the promised benefits will actually be delivered, and I’ll be able to update you all about a great new path to finding the right services for young adults on the spectrum. Stay tuned . . . .
Originally Published on The Never-Empty Nest