Ever since my daughter graduated in 2014 from OASIS, the autism support program at Pace University, Sarah 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 Sarah. 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 Sarah 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 Sarah, 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 Sarah’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 Sarah, 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 . . . .
Marguerite Elisofon is a New York City writer and the author of My Picture Perfect Family, a memoir about how her family navigated life with a child on the autistic spectrum before the internet and support groups existed. She also blogs about parenting young adults and disability related issues in The Never Empty Nest. Her writing has been featured in a variety of publications, including Time and NY Metro Parents magazine, and her family’s story has been featured by the NY Post, Fox News, The Daily Mail, and on Jenny McCarthy’s Dirty Sexy Funny radio show. A Vassar graduate, Marguerite was born and raised in New York City, where she still lives with her husband, Howard, in their mostly-empty nest. She is available to speak about a wide variety of issues relating to twins, parenting, and autism. 
I feel so lucky not to be in your shoes. On the other hand, I have a friend with a 28-year-old autistic son, David, whom she is guiding toward independence (fingers crossed). I will send this URL to her. I think she can use some encouragement from one who knows.
Good luck to your friend. If enough of us speak out, and work to help our young adult kids, perhaps the world will pay attention and support us. The sooner people realize that we are all in this together, the better our planet will fare.
Did Lyn really say “she’s lucky she’s not in your shoes??” Really?? Is that disgust veiled as compassion? Am I missing something here?? And her friend’s son is “a 28 year old son with autism”
Yes, Lyn made that comment. Not sure about the intent behind the comment, but I did NOT find it particularly compassionate or kind. And, no your didn’t miss anything. I don’t know why she couldn’t have simply told me her friend needed encouragement and left it at that.
Hi Lyn,
Samantha’s story is so inspiring to me. I hope your friend and her son find encouragement in this memoir.
The funny thing is that 6 years ago without Self-Direction my son had no supports other than his parents..and as the primary support staff I was getting burned out and not really in a place to do any good. Did our then 20 years old son want his mommy by his side? Well, yes! and No! yes, he needed a trusted adult to help him navigate and understand life as it unfolds. But no-it’s so not cool to have your mom with you. SD-It’s a lot of work to pull it off well, but as we all know life with autism/aspergers is a journey, not a sprint. If our son can make community connections, finish college, engage in the work world with the supports of strangers..then he’ll be part of a village, and isn’t that what it’s all about! So, from my point of view, it’s the best thing for our son.
Bravo! I’m glad to hear self-direction is working for your son. I’m just starting down that road and feel pretty burnt out myself. My daughter also needs help, doesn’t want it from me any more and wants to be on her own at 25/ She graduated college two years ago, co starred in a movie and has a boyfriend, but still needs help with life skills and vocational training. Hopefully, SD will bridge the gap.
Marguerite,
Your words and work, and Samantha’s accomplishments, are inspiring. My brothers-in-law, each in San Jose, California, work for a private program once begun by parents of adult children with autism called HOPE. I can ask them for more information if you cannot find it.
xoxoxo
Thanks. I’ll definitely check out HOPE and let you know if I can’t find it.
xoxo
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Thanks. Best to you too.
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Marguerite, your story almost mimics mine. Been approved through OPWDD and NO services for over a year now. Just more and more red tape. I am now starting the process. I live in Manhattan and can’t find a broker. I am wondering what your update is. It’s just too much. Love to connect.
My budget launched last week, so I’m excited. Although I haven’t hired anyone yet, I believe this is definitely the way to go.
I just recently found out about this program through my MSC. I attended the orientation a few weeks back, completed the DDP2 and just received my daughters approval letter 🙂
We are starting down that road as well now. The future is looking bright!
Just saw your comment. Hope your program is going well. It’s important to find the right people to help your daughter.
Hi Ms Sahara I also have a child thats 19yrs & been diagnose with autism amongs a few other things just about a year ago.. Do to Reapided anyuresms… I also was leaning twas Self-Direction myself”” Which lead me to stumble across ur article… Inwhich i found to be quit touching/inspirational.. Thanks””” Even thou we know that we’re not alone out here… It doesn’t quit always feel like it… Point is… There’s some else that can relate/Inspire… Thanks Again””” I Day @ A Time
Glad to be helpful/inspiring. I know how hard it can be.