The often invisible pressures of being a caretaker

The author's grandfather in her uncle Angel's room.

MY UNCLE ANGEL had severe intellectual and physical disabilities. Much of his life was spent inside a crib that got bigger as he grew from a baby into a 200-plus-pound man with increasing special needs.

My tiny grandfather lifted my uncle from his crib to his wheelchair or the bathtub and back again until my grandfather died, at about age 90.

He and my grandmother were Angel's constant caregivers. Some of that was my abuela's doing - no one could care for Angel the way she could. She ran off more than a few helpers. She'd scoff - out of fear, I think - when others suggested that maybe Angel could learn how to communicate better or hold a fork if he went to a program or an institution for people with disabilities.

It's too bad because I think Angel had the ability to learn. I learned all kinds of curse words from listening to him repeat the doozies he picked up from the open window near his crib.

Ever since the disturbing story about Nyia Parler, the Philadelphia mother charged with dumping her 21-year-old nonverbal quadriplegic son in the woods for days while she went to visit her boyfriend in Maryland, I haven't been able to stop thinking about my uncle and grandparents.

They're all gone now, but even as a young girl I saw the extreme pressure they were under. Every single moment of every single day revolved around Angel. Abuela wouldn't leave him for more than a few hours, so I can't even imagine how horrified she would be at what this mother did.

Parler, who is charged with attempted murder and related offenses, left her son on a pile of leaves with a blanket and a Bible. She should have kept the Bible for herself because God help her for what she did.

Her son, Daequan Norman, is at Children's Hospital of Philadelphia, and will be placed in a residential care facility after he's discharged. He was dehydrated, malnourished and his eyes were damaged before he was found off 59th Street near Cobbs Creek earlier this month. And yet, as WHYY's Maiken Scott first pointed out in a recent article, as horrified as other parents with disabled children are at Parler's actions, many of their reactions are also tinged with the sobering reality of being a full-time, sometimes single, caretaker.

I still remember sitting in a small classroom in Connecticut years ago with a bunch of parents desperate to get basic services for their children. The parents were angry, but they were also petrified at the thought of what would become of their children when they were no longer around to care for and fight for them.

I had similar conversations this week with parents in Pennsylvania, including Cindy Duch, director of parent advising for the PEAL Center, which serves families of children with disabilities and special health-care needs. Duch and I talked about the challenges of finding proper care and resources for her 20-year-old autistic son and the 14,000 Pennsylvanians with disabilities on waiting lists for services - many for decades. And, of course, the actions of the Philadelphia mother.

"Throughout the country you hear similar stories of these things happening and if you're not in a similar situation it's very easy to say, 'What a terrible mother . . ., ' " Duch said. "It's absolutely horrifying what she did, but it also takes greater understanding to understand the pressures that no one takes into account, including a mental-health system that isn't set up to help families before such tragic situations occur."

The challenges only get more pressing, she says, as the children turn into adults with fewer services and no safety nets. "It's like jumping off a cliff with no net," she said.

Ajeenah Amir, Gov. Wolf's deputy press secretary, said in a statement that for the past several years, critical investments in services for those with developmental disabilities have been cut, leaving too many with nowhere to turn. "The governor believes the status quo is unacceptable," Amir wrote.

Wolf's proposed 2015-16 budget includes initiatives to reduce waiting lists for home and community-based services and expand opportunities for these individuals.

Celia Feinstein, who heads Temple's Institute on Disabilities, said she's glad that the latest tragedy has initiated more discussion about the challenges faced by families who care for disabled children - from reduced funding that has left major gaps to a lack of relief for caregivers.

Here's hoping it doesn't just end at talk and proposals. In the wake of horrible events, we often talk about something good coming from them. Sometimes it does, though not often enough. We have short attention spans. Short-lived outrage has replaced long-term solutions.

Parler, the Philly mom who abandoned her son, needs to answer for what she did. By all accounts, she had family she could have turned to for help.

But let's not just judge and turn away. Let's do all we can to protect some of the most vulnerable among us by caring for their caretakers.




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