In 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 AssistantCommissioner 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, yada, 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.