What’s next for my daughter, a high functioning young woman on the autistic spectrum? I’ve been attempting to answer that question ever since Sarah graduated cum laude from Pace University with the Class of 2014. (See “Miracle Milestone,” 5/25/14). Ever the savvy Mom of a special needs kid, I’d already sent in voluminous papers regarding Sarah’s disability months before she received her diploma. My plan was to get starting early in helping her secure a job through ACCESS-VR, a government agency that funds providers of job counselors, assessments and coaches. Alas, the Pace staff member responsible for sending Sarah’s papers to ACCES-VR quit academics to go into the hiking business. Sarah’s paperwork was lost, I discovered, after several months of follow-up. I had to copy and resubmit all her tests and reports AGAIN and (of course) WAIT. Finally she received approval for ACCES-VR in late December. As of today, job assessments and training are supposed to start “soon” (fingers crossed).
Thanks to my persistence and Henry’s collaboration with attorneys who specialize in helping families with disabled young adults, Sarah was approved for Medicaid, SSI and will (eventually, I hope) get a half-fare metro card. Our daughter was also approved by the OPWDD (Office for People with Developmental Disabilities) and is now eligible for life skill support services and the low income housing wait list. The good news (and bad news) is that we convinced enough government professionals that Sarah suffers from disabilities sufficiently severe to qualify her for the “safety net” of life skills support. For me (and perhaps for my daughter as well) the testing and evaluation process was a painful crash landing, an anticlimax after the joy of graduating college cum laude. With Henry holding my hand, I’ve been gritting (and grinding) my teeth, hoping against hope that protecting Sarah as an adult, and navigating the government services available to her, will not be as arduous and frustrating as our yearly fights with the Board of Education during my daughter’s childhood to pay for her special education.I should have known better. Before Sarah could be eligible for home and community-based services, I was required to attend two hours of Family Education and Training (FET) to gather the information “necessary to make informed decisions and to teach parents about service alternatives.” (UGH!) Dutifully, I trekked from to 26th Street and 12th Avenue for my “training” session at SKIP, a 501©3 non-profit. What does the acronym “SKIP” mean? Sick Kids (Need) Involved People (!?). Who makes up these annoying acronyms? If they are supposed to be user-friendly short-cuts, intended to simplify a hellishly painstaking quest, then these acronyms fail miserably. I don’t know about other parents, but I’m tired of snappy nicknames. Who wants to LEARN and REMEMBER what all these initials actually MEAN?
Hello, out there; can you hear me? Parents with special needs kids have enough challenges without memorizing a whole new language of abbreviations before setting off on the complex process of obtaining services for our kids. No, thank you. We don’t want emojis or sound bites. Just cut to the chase. Give me a simple step-by-step “to do” list: where to apply, who to call, when and how to follow up and—if possible—a reasonable time-line.
Speaking of time-lines, I arrived 20 minutes late to SKIP’s Parent training session, and it was a good thing I did. The first half hour of the session was entirely devoted to instructing parents on reports and papers necessary to apply for OPWDD eligibility (BEEN there, DONE that). Before taking my seat, I picked up a formidable pile of papers that had been handed out to all 5 parents who were present. Included in the tree-slaughter was a “resource booklet for individuals and families.” The booklet, 51 pages long (plus a table of contents) was entitled: Front Door – Access to Services. If that wasn’t enough to overwhelm harried and emotionally drained parents, there were additional separate (but useful) hand outs: Listing of Nonprofit Providers Offering MSC Services, Non-Medicaid Case Management Programs, NYC Front Door Numbers/OPWDD, NYC Front Door Numbers/OPWDD.” (Not exactly soothing bed-side reading)!
“Am I in the right place?” I asked SKIP’S Deputy Director, who was leading the session. “My daughter’s already been approved for services. I thought I was here to learn what to do next.”“We’re just about to talk about that. If you could turn to page 9…”
I sat down next to one of the four other mothers in the room and flipped to the appropriate page. There I found what looked like three mini-slides with microscopic print, explaining Medicaid Service Coordination, OPWDD Service categories and “General Supports May Include.” Next to the slides were empty lines for taking notes on the discussion. I couldn’t help noticing there was a presentation screen on the wall. Was it broken? I wondered.
Although the SKIP instructor seemed kind and helpful, my mind trailed off. Three of the other mothers had questions and concerns about seeking services for their under-18 kids. Only one other mom was there to learn about services for her 26 year old daughter with cerebral palsy, and her needs were also completely different from mine. What we had in common was being married to securities attorneys, and both our daughters were interested in music. Kindly, the other mom wrote down a few quick ideas for Sarah. I tried to pay attention to the SKIP instructor, and even took notes, but I couldn’t help feeling like I was sinking deeper and deeper into verbal quicksand.
Luckily, this one-size-fits-all info session ended before I drowned in words. (I’d sort through all the papers and decipher their meaning another time.) But I received the necessary “certificate of participation,” confirming my attendance at SKIP. Phew! I could take the next tiny step forward in securing help for my daughter. At the end, I did finally get a chance to ask a few questions privately.
“Isn’t there a simpler way? This process seems very long and complicated,” I couldn’t resist adding.“We’ve been trying to simplify it,” the SKIP Deputy admitted. “We applied for a grant so parents like you—who are capable and well-informed—could self-register, but we got turned down…”
Frustrated and bewildered, I headed home in the bitter cold. Hoping for enlightenment and encouragement, I emailed our attorney who specializes in helping parents of young adults like Sarah navigate this labyrinthine system of securing support services. Did I get the answer I was looking for?
Here’s what our lawyer wrote: “I’m going to put together a package of the documents everyone is asking for which I will send for your review.” (Oh, goody!) More trees would have to die in order to convince somebody somewhere that Sarah needed life skills help. I’d have to call my attorney to brainstorm and discuss (alas, more legal fees). I continued reading the email, which ended as follows: “There are long waiting lists for many services. This is the result of cutbacks in funding and the current popular belief that too much money is being spent on people with disabilities already.” (My italics).
I’m not surprised. Are you?