Disservices for the Disabled—Hell to Pay!
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?
Labels: ACCES-VR, acronyms, autistic spectrum, Board of Education, cerebral palsy, college grads, disabilities, FET, Front Door, Medicaid, OPWDD, Pace University, SKIP
