addition to reporting on the dismal state of young adults like my daughter on
the autistic spectrum, trying to find jobs and lead independent lives, I’m
painfully aware of how much worse things are for a variety of other empty-nest
parents. Just look at the most recent news. My heart goes out to the parents of
Etan Patz, who must suffer through another trial of their son’s confessed
murderer because one juror out of twelve could not vote for a conviction. Etan
Patz was every parent’s nightmare—killed at age 6 on his first day of walking
independently to his school bus. At least my Sarah is alive and well, even if her
road to independence is long and frustrating.
Even more horrible (if that’s
possible) is the front page headline in The
New York Times this week: “Former Captives in Nigeria Tell of Mass
Rapes.” Remember when the Boko Haram
kidnapped almost 300 hundred school girls last year? (See "Missing on Mother's Day," 5/16/14).
Now dozens of these young women have been released pregnant and battered, to a camp for the displaced near Borno State Capital,
Maiduguri. If you recall, the Boko Haram militants had openly bragged they would treat the kidnapped school girls as chattel
and to “sell them in the market.” Girls
as young 11 were subjected to systematic, organized sexual violence with the stated
goal of impregnating as many as possible so as to create the next generation of
Boko Haram militants.
Can you imagine how the parents of those girls must feel? If American girls had been kidnapped, I’m
quite certain that our government would have frozen Nigerian assets, sent in
drones or done whatever possible to save
OUR daughters. The campaign to “Bring Back OUR Girls” would have gotten them
home a lot sooner and discouraged any surviving militants from future
kidnappings. Unfortunately, each country
only cares about its own citizens—less so about females. Incredibly some governments
do not yet realize that we are all members of the human race entitled to basic
rights regardless of gender, skin color, sexual orientation, or religion.
These depressing observations about
humanity and compassion—or the lack of them—are what floated through my head as
I sat in a meeting room crowded with angry parents of kids with disabilities.
Despite my misgivings about government agencies and their insufferable acronyms,
I decided to attend “NYC FAIR” (Family Advocacy Information Resource) for
parents of special needs kids.
Addressing the audience was the OPWDD Transformation Panel (Office for
People with Developmental Disabilities) which included two parent
representatives as well as Peter Pierri, the Executive Director of the
Interagency Council (IAC) of Developmental Disabilities and Neil Mitchell,
Special Assistant to the OPWDD Commissioner. The parents’ rage over the
appearance of the OPWDD Assistant
Commissioner instead of his boss was remarkable and radiant.
So why was I there? Out of love for Sarah and the desire to break
through the gridlock that has defined my daughter’s life since she graduated
from Pace University. Although OPWDD has
approved life skill services for my daughter, and she has finally been assigned a Medicaid Services
Coordinator, (over two months ago) she was STILL not getting the help she
needs. I was told it might be at least six months...backlogs…wait lists, yada,
Maybe just maybe, I thought, if I
met a couple of the paper pushers with their random power or appealed somehow to
their overseers, I could move Sarah forward on the line. I wanted to tell her
story in person, show them her smiling face on my cell phone, and transform my
daughter from an idea on a pile of paper
to a vibrant individual, deserving of help sooner rather than later.
For two hours I sat quietly
immersed in my own state of suppressed fury.
The topics up for discussion included: community integrated housing,
managed care, employment and how to anticipate “service needs for the future to
ensure sufficient funding and flexibility.” Lofty goals considering how
completely broken the system appears to be RIGHT NOW.
Despite the clamoring of too-many
parents for too-few services, OPWDD had UNSPENT money last year, causing this
year’s budget to be smaller…. And the crying need continues! My heart goes
out to all of the many parents whose kids require 24 hour care and who will never
get jobs or be independent. The people in the audience beside me were older
parents of older adult kids, who had
either been waiting for services for
years, or whose parents were terrified they would LOSE services as a result of
proposed changes. How agonizing it must be for a parent who's unable to care
for a severely disabled child in the family nest and to have no appropriate
alternatives! I knew that if I stood up
and tried to raise my voice among the angry many, I might have to deal with a
lynch mob. Who among them would have
sympathy for the mother of a high-functioning college grad on the autistic spectrum
in need of life-skills and job coaching?
Squirming but silent, I remained in my seat watching the clock.
At the end of the two hour meeting (that
felt like two months), I dashed up to the panel members and spoke to the ones
that (seemingly) had the power to help my daughter. As quickly as possible, I
told them Sarah’s story, showed them her picture, and handed them my Never-Empty Nest business card. Maybe they’d remember
I was a writer? Not just another in-your-face mom, they invited me to repeat
Sarah’s story in an email. Of course
I’ve taken it a step further by adding them to my Never-Empty Nest mailing list. Can the power of the pen help my Sarah? Or will her needs be dismissed because
she’s higher functioning than so many other adults with disabilities? Is there
a sweet spot where you have just the right amount of disability to qualify for government
aid? It’s a mystery. Stay tuned.
Labels: autistic spectrum, Boko Haram, disabilites, disability housing, employment, gender bias, IAC, ISIS militants, kidnapping, managed care, Never Empty Nest, Nigeria, NYC FAIR, OPWDD, rape