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When Children With Developmental Disabilities Grow Up

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“Generosity has built America. When we fail to invest in children, we have to pay the cost.” — Bob Keeshan

At the start, let me be clear, donating to a charity or cause which helps children with disabilities is wonderful. If you have done so, you can feel awesome about yourself. However, I believe it will probably not create the lifelong change you intended.

Human beings seem to have an innate desire to categorize: to put labels on people, places and ideas. In this high-tech, modern world we’ve grown accustomed to having rapid solutions and complex problems right at our fingertips. But the byproduct of that behavior, however unintentional, is that people get lost; paint with a broad brush and you’re bound to miss the fringes. And in the developmental disability community within the United States of America, a great many people occupy that space on the margins. It’s time we think and act very differently in America. One of my heroes Mike Mentzer quipped, “In order to lead the orchestra, you must first turn your back to the crowd.”

Approximately six million people in America are diagnosed with a developmental disability. Chances are you know one or two, perhaps in your inner circle or along the periphery of your social network. Not hitting closely enough to home? Let’s twist the example a bit: suppose you acquire some sort of disability and require assistance independently doing those mundane but necessary tasks many of us take for granted. Wouldn’t you feel relief knowing a litany of services exist to make life more manageable for you and your loving family? Lastly, and not to drift too deeply into the philosophical, aren’t we all bettered when the least fortunate among us are lifted up in a compassionate and dignified manner?

I’m a 38-year-old guy living in North Carolina, USA with cerebral palsy. The brain damage that causes the condition cannot currently be fixed. Treatment and physical therapy help manage my impaired body movement, muscle control, muscle coordination, muscle tone and reflex, posture and balance.

Despite my hard work and my family’s best intentions, my body is starting to deteriorate now. I’m having tremendous trouble independently doing certain activities of daily living, such as getting my foot over the four-inch lip of the shower door. Fortunately, I’ve still got my mind, my imagination and the “Dark Knight” trilogy on Blu-ray. I started a search to determine what services and resources, both locally and nationally, I could enlist to assist me. Here’s the bottom line, which was affirmed time and again:

A myriad of doctors and agencies are available for disabled children, but nobody really anticipated their needs as they entered into adulthood.

Should I have been surprised? Children are still malleable. It’s very rewarding for providers to witness the positive changes their aggressive treatments produce. Moreover, kids are cute and photogenic. Fundraising is easier and everybody feels fulfilled. But like most conditions, developmental disabilities aren’t managed with an injection of services and compassion at the onset of symptoms. They need lifelong care. If the goal is for kids with disabilities to grow up, let’s make sure they’ve got a support system to grow into rather than age out of. Some clinics where children with disabilities can receive care impose seemingly arbitrary upper-limit age restrictions. For instance, a child might receive ongoing treatment until age 21, and then there’s no definitive plan to transition his care.

Moreover, if  a person must enter a facility to receive care, many such facilities impose strict age minimums: 55, 62 or similar benchmarks. If one inquiring about becoming a resident falls below the minimum age, as I surely do at age 38, the prospective facility will usually reject the candidate.

I believe American health care has a critical shortage of services and resources available to persons with developmental disabilities like myself. Social networking sites and forums are filled with individuals lamenting they’ve “got nowhere to go” when they can no longer care for themselves. It’s an untenable situation for parents or other family who are aging and overwhelmed.

Hopefully, as more people wake up to this problem and its scope, more people will feel compelled to advocate on behalf of disabled people. Very often, people with developmental disabilities and their caregivers can’t lobby for themselves, or are too exhausted by the rigors of life to do so. Hopefully talented writers will lend their pens and keyboards to help write and edit grants for services for people with developmental disabilities.

This story originally appeared on Michael Manley’s website.

Getty image by Visage.

Originally published: November 8, 2018
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