"Down syndrome protection legislation."
That's how State Reps. Mike Turzai (R., Allegheny) and Judy Ward (R., Blair) cynically described House Bill 2050 when they announced their proposed legislation in January.
Sounds noble, doesn't it? The bill seeks to ban abortion based on a diagnosis, or even just a hunch, that a fetus has Down syndrome.
It's an unenforceable restriction because — and I can't believe I have to make this obvious point – a woman who seeks an abortion before 24 weeks is under no obligation to explain to anyone her reasons for doing so.
Even if she were, she'd just make up a more "acceptable" reason to terminate her pregnancy.
In passing H.B. 2050 out of the Health Committee on Monday — with no public hearing — and fast-tracking it for a final vote next week, Harrisburg's anti-choice gang gets to pretend to care about people born with disabilities when this state's advocacy for them says otherwise.
I learned as much while researching "Falling Off the Cliff," a four-part series published last December that delved deeply into the lives of people with intellectual and developmental disabilities and the families who care for them.
I was gutted by how tough, worrisome, and exhausting their lives could be.
Thousands of them languished for years on a waiting list for government assistance that would fund help with the basics of daily living, like feeding, toileting, bathing, and dressing.
But even when those dollars came through, the direct-support workers who showed up at their doors were often incapable of providing reliable, competent, and compassionate care. Parents shook with rage as they shared stories of caretaker abuse (mysterious bruising, theft of household money) and neglect (broken bones, even death).
Children with disabilities rarely fared better in school, where the quality of special education instruction and post-school planning waffled wildly from district to district.
The gaps became evident after high school, when families tried in vain to find engaging daily programs or appropriate work for their now-adult children, who yearned for meaningful ways to participate in society.
What they found, instead, was that their sons and daughters had graduated from the classroom to the sofa, losing whatever gains they'd achieved in school.
They were denied the chance to express their abilities in the world. And the world was denied the chance to know them.
These families did not want pity. They just wanted help to ensure, to the best degree possible, that their sons and daughters would have what all parents want for their kids: safety, happiness, independence, meaning, belonging, and being known and loved for who they are.
It was heartbreaking how hard they had to fight for that. And it was obvious that what they needed was more support in Harrisburg, in the form of new funding streams, creative policies, and innovative programs to help people with disabilities enjoy life with dignity and respect.
Such support requires reliable Medicaid funding, since that's how we finance services for people with disabilities.
But Republican legislators, at every turn, have sought to dismantle the safety nets that would keep these families from tumbling into an abyss from which no one can return on their own.
"The difference is day and night," disability advocate Audrey Coccia said in "Falling Off the Cliff," describing how federally mandated services disappear once a person with a disability turns 21. "One day your kid is getting what she needs. You're able to go to work because she's being looked after. The day she turns 21 — boom — the help ends."
To be fair, H.B. 2050, acknowledges a hard truth: Worldwide, so many women abort fetuses because of a Down's diagnosis that the syndrome is close to extinction in some countries (Iceland's Down-related abortion rate is almost 100 percent).
That's a wrenching irony, given game-changing medical and social advances over the last decades that have rescued people with Down's from lonely lives and early deaths. Ward said as much in January, when she announced the introduction of H.B. 2050.
"I like to think the United States is better than that," she said. "I think instead of giving [pregnant women] reasons to get an abortion we need to provide more information and support when it comes to Down syndrome."
Except that we already do. Pennsylvania's Down Syndrome Prenatal and Postnatal Education Act, passed in 2014, mandates that medical practitioners give expectant or new parents "informational publications," to be provided online by the state Health Department.
The law renders H.B. 2050 moot — unless, of course, the real goal of HB2050 is to restrict abortion, period.
You know what would reduce abortion among women whose fetuses show evidence of disability? Legislation aimed at making life better for anyone born with a disability – not just Down's. But ongoing attempts to shred America's safety nets prove how far we are from that reassurance.