As I was walking through Lowes this last Saturday evening coming towards me was an adult child in her upper twenties or lower thirties supporting herself with the cart she was pushing. With each step she displayed the tell-tale trait of some sort of disability, which I assume is some variation of cerebral palsy. In front of her walked her father. He looked to be pushing sixty. He looked tired. He looked like a man searching for an item to fix something rather than create something.
Now, quite probably I am projecting far too much here. And yet, there would be me in another 5-7 years if Emma had been able to overcome her mental health challenge with Borderline Personality Disorder. Again, my mind raced as simultaneously, and in-congruently, my thoughts wandered from here to there. Some of what crossed my mind…
Thank God For Parents
Not every home situation is ideal and not every parent is equipped for the long haul. And yet most parents stick with it out of love, obligation…whatever the reason. These parents by in large spend a great deal of their retirements and would-be vacations to support these children as they age. People with disabilities challenged with debilitating mental health issues, serious autism, down syndrome and/or physically challenging disabilities like cerebral palsy will find it enormously difficult to hold down steady work over the long term, much less a satisfying and rewarding career.
For most of these parents they are not choosing between the trip to Europe or a week in Hawaii. They are choosing between limited and quite expensive insurance plans and permanent, albeit less than glamorous, housing solutions for their loved ones.
Throw Away People
And what of those that don’t get parental or familial support as they continue to age in to their middle age? Or what happens when the parents pass away? That is the question that used to haunt, literally terrify, Emma. She would perseverate on how she would finally be alone with no one to help or guide her. Her anxiety over the issue would build and build and build and no amount of contingency planning or the explaining of special needs trusts (we have been very blessed in our business endeavors) made sense to her or relieved her worry.
For many, they become Throw Away People. Likewise damaged or fearful siblings pull away. Aunts and uncles look the other way and try to forget. Fatigue sets in for many caregivers and visits every week become every month, then every year until finally… alone on their own.
The cries for lower taxes/spending and self-responsibility urge government, both national and state, to look for tax cuts. Cutting the funding for mental health services and for people with disabilities is easy. After all, many people with the diagnosis are unable or simply not fully aware of their voting rights and responsibilities. Special needs people, both physical and mental, don’t create enough of a population with a large enough percentage of wealth (remember, they are most certainly spending a larger portion of their income on insurance and medical care) to gain the favor and attention of politicians at any level.
If you doubt what I say, look how the State of Kansas, for instance, has eviscerated funding for our most vulnerable citizens, and even our schools, over the last ten years. (In fairness, these last few months have begun a restoration of cuts in Kansas…though still seriously underfunded per medical recommendations.) All in the name of tax savings for people in my or similar income brackets. The whole thing is sad, really.
What You Can Do
First, and this may sound like nothing at all, recognize and reach out to people in your sphere that could use just a little encouragement. Attend a fundraiser and give more than you thought you would. Volunteer to attend to the care of a special needs child or adult so that the full-time caregivers can get away for a weekend, or even just a few precious hours.
Second, you can become aware of how many families out there are struggling with this in their families. You will be astounded by the sheer size of the population once you become aware. Autism is amazingly more common today than even thirty years ago. I would almost bet you can think of someone right now. Then take that awareness and let it carry forward in your spending and voting patterns. Spend money where they hire people with special needs. Here in Olathe, Hen House and Payless grocery stores and Carmen’s Cocina are three such businesses. And I applaud them.
When you vote, think about the consequences of the vote. “Why should I have to pay higher taxes to support someone else’s special needs kids?” Well, in effect, you already are. Only we’re paying more on the back end by not addressing the issues on the front end. Early diagnosis for so many of these mental illnesses is key to recovery therefore cutting down on emergency room visits for those unable to afford or keep health insurance. Physical limitations can, in many situations, be bettered through modern medicine which creates a more productive member of society.
Lastly, what kind of nation and people do we want to be? Compassion, care and participation in the betterment of others’ lives is not a Democrat or Republican issue. I refuse to allow the discussion to be framed in such a way. Throwing money at the problem isn’t the answer, either. Increased funding, increased awareness and increased civic participation in helping these special needs people benefits us all. Yes, even our tax base benefits by creating productive employees that receive less in government support, greater pride in contributing to their own needs and allowing older care-givers to live their last years in dignity without worry as to what will become of their special needs adults after they pass.
“It was once said that the moral test of government is how that government treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; and those who are in the shadows of life, the sick, the needy and the handicapped.”