By Jay Ruderman
There are times when I take the opportunity that Zeh Lezeh affords to share with you something that simply but powerfully reminds us of why we do what we do here at the Ruderman Family Foundation. Putting the critical importance of services for those with disabilities in clear and poignant human terms, Mike Ervin’s op-ed that ran recently in The New York Times (see below) demonstrates more than any study possibly could how tenuous the safety nets are that mean the difference between truly living and barely surviving.
— Jay Ruderman
“Times are hard. The states are broke, and some say it’s the fault of people like me, sucking up Medicaid dollars.
Last week, here in Illinois, the governor signed into law $1.6 billion worth of Medicaid “reform.” The ax came down on disabled children and young adults who are M.F.T.D. — medically fragile, technology dependent — those who have tracheostomies, are ventilator-dependent or need central intravenous lines. New co-payments and income caps could mean that many of these young people will no longer be able to receive care at home and will have to be institutionalized. No more free lunch for them!
I’m 55 years old, and I’ve been sitting in some sort of wheelchair all my life. My wife sometimes uses a motorized wheelchair, too. We live in a condo with our two dogs, and we depend on public programs like Medicaid to keep us out of nursing homes. But the reformers have been on such a scorched-earth rampage of late that I dread that the next state budget will be the one that cuts us out.
My wife and I employ a pit crew to help us do all the ho-hum stuff everybody does every day, like getting dressed and cooking and the laundry. Someone lifts me out of bed each morning, washes my face and combs my hair and gets me set up for the day. Someone else lifts me onto the toilet and into the shower and hoses me down at night. That’s how it will be for the rest of my life. But it’s really no big deal. I hire and fire and direct the members of my pit crew, and their wages are paid by the state through a Medicaid-waiver program.
My wife and I would probably be considered middle class; she works full time managing a disability rights organization, and I’m a freelance writer. But we would become dirt poor mighty fast if we had to pay for this assistance ourselves. It would probably cost us at least $50,000 a year. Anybody out there have that much discretionary cash sitting around?
If we lost the waiver for this home care, I guess we’d have to let ourselves become impoverished to the point where we could qualify for ordinary Medicaid, which would then have to pay for our incarceration in a nursing home — probably at a much higher cost. That won’t happen, right? It’s too ridiculous. Surely the Legislature can add an additional tax on 40-ouncers or casino profits or come up with some creative way to address the fiscal mess. Each time budget negotiations build to a boil, I reassure myself that common sense, empathy and justice will prevail.
But that’s gotten harder to believe after this latest round of cuts. It’s a nightmare: the vicious, man-eating Reformasaurus has gone berserk. Even holding up M.F.T.D. kids as human shields can’t ward it off these days. If it will swallow them up, what chance is there for a bearded, sarcastic, unsympathetic character like me?”
Mike Ervin is a writer and disability rights activist.