'We're no longer invisible': Parents of children with disabilities speak out | Ronnie Polaneczky

Norman Moore, right, who was born with intellectual disabilities, has lived with State Rep. Stephen Kinsey and his family for 18 years through a life-sharing program.

Cindy Hook of Warren, Pa., recently had to put a lock on her bedroom door to protect herself from her intellectually disabled six-foot-one, 280-pound son, whose increasingly aggressive behaviors are not being taken seriously by the agency she depends upon for help.

Jill Daly of Glen Riddle is fighting a rare form of head and neck cancer that has spread to her lungs. She is losing the energy to advocate for her autistic son, 29, who came home for the weekend from his residential treatment facility covered in bruises.

Pete Byers of Pitman, NJ, said he and his wife have been able to give their brain-injured daughter, 32, much of what she needs, but that parents like them “also agonize over what [our kids] miss: the capability and confidence to cope outside, their first kiss, having a family of their own and on and on. Many won’t realize what they miss, but as parents our hearts ache on a daily basis for what could have been. And we do the best we can.”

These are just some of the many families that filled my inbox and voicemail with their own stories after reading about the plight of similar families in “Falling Off the Cliff,” my four-part series about adults with intellectual and developmental disabilities and the challenges they face as they age.  So many families are eager to tell their own tales of love, heartache, hope and frustration on behalf of their disabled loved ones.

And I want to apologize to the readers I’ve not yet responded to who contacted me. I’m working through all the messages and calls, and I promise to get back to all of you.

Because stories like these, one father emailed me, are at long last letting the world know what they’re up against.

“We’re no longer invisible,” he wrote.

Each family is different, but they all face the same challenge: the systems and supports that are supposed to help them are rife with unpredictable caregivers, sloppy agencies and wavering government funding.

“Falling Off the Cliff” has bumped their plight above the radar, says Pa. State Rep. Thomas Murt (R., Montgomery), who has authored four bills that address the state’s funding for services for people with intellectual and developmental disabilities.

“Everyone in Harrisburg is talking about it,” says Murt.

But these families don’t need more talk. Talk won’t help them hire the best home health aides, transport their kids to the right therapies or secure the most appropriate housing for their loved ones.

Instead of more blab, they need for Murt’s bills, which have bipartisan support, to be given a hearing in the House Finance Committee, where they’ve been collecting dust since FebruaryRep. Bernie O’Neill, who chairs the committee, did not return my call asking what the foot-dragging is about.

I’m sorry about that. And I promise to stay on him.

I don’t need to keep after U.S. Sen. Bob Casey (D-PA), though. Last week, he Tweeted out “Falling Off the Cliff” then penned an Op-Ed for the Inquirer about some of the issues the series spotlights, including the years-long wait for community-based services for people with disabilities.

Casey has co-written a bill with U.S. Sen. Chuck Schumer (D-NY) called the Disability Integration Act that, if passed, would be an absolute game-changer for families. Currently, people with intellectual or developmental disabilities who receive Medicaid funding are guaranteed services in an institution or nursing home, but families “waive” that right in lieu of funding to pay for services in the community.

Because funding for those waivers is not guaranteed, however, they’re the first funds to hit the fan when Washington makes budget cuts. That’s why half a million people are on a waiting list for services; in Pennsylvania alone, that number is over 13,700. The Disability Integration Act would finally bring them relief.

As lengthy as it is, “Falling Off the Cliff” only skims the surface of what families face as their children with intellectual and developmental disabilities age into adulthood and beyond.

So in the coming months, I’ll write about why some families prefer institutionalization for their disabled children over community-based services.

The role of siblings in the long-term care of their disabled brothers and sisters.

The passionate arguments for and against sheltered employment, the grace and dignity of a housing program called “life sharing,” and so much more. And I’ll tell them through the voices of adults with disabilities and the voices of their fiercest advocates – the families who love them most and know them best.

I’m already working on them. I promise.