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.”
Thank you for using your voice on such sensitive subject. You’re a blessing!
My mom died 3 1/2 years ago. I was 44 when she died and she was 63. Too young and not expected . I have aunts in uncles but they live far away. I have no siblings. I have cerebral palsy and have been blessed to be able to work as a therapist up until five years ago when my body started not being unable to handle a full-time job. I hope to get back to work as being a therapist is my passion, and I believe my calling from God . However I am now back on disability and I’m not sure that I can go back to work full-time and keep my medical benefits or afford to buy medical benefits. Like Emma, I worry about what will happen to me if I lived to be into my late 60s and beyond. I don’t want to be in a nursing home. I don’t know what to do. It is like we are throw away people to most of society. My mom loved me more than anything. She was not in a position to provide for me as I age and honestly we did not think I would need it but now I wonder. I know need a care attendant and have to pay for it myself because I make “too much money” for the state of Kansas to pay for it. it is like we are through away to people to most of society. I had to spend my retirement that I had saved when I left my job so that I could get back on disability. I guess when I can No longer afford to pay care attendant services or completely care for myself I will have to go to a nursing home. Medicare does not pay for assisted living or nursing home. All assets have to be spent (including part of my disability income) to qualify for Medicaid. At that point I could get a Medicaid bed in a nursing home. If I give up all assets now, including part of my disability income, I could get Medicaid and perhaps get more help, but I would have to live in poverty and I did that all through college. I think people with disabilities deserve more than that. Plus I plan on working in some capacity so I cannot go the Medicaid route until I know for sure that I’m no longer going to be working at all. I have a Masters degree and have a lot to contribute to the working world. I am 48 now. I have been praying to God that when it is my time to die that I would just drop dead or die in my sleep or have a very short illness so that I don’t have to go to a nursing home. I have a great church family great friends, but they cannot take care of me and my family is too far away to take care of me and they should not be expected to anyway. This is sad and what is even more sad is that there are many people in the same boat that I am.
Hello Bridgid, I am touched by your challenges. I have no “Easy” button and I certainly do not have the answers to every question. I do know this, I am encouraged by your faith and reliance on God. Luke 6:20-23
And I know this, you are not a “throw away” person. I used that term to grab attention. I know that to someone you have value, probably more than you know. Hang in there. Stay as positive as possible. Keep reading. I’d love to hear more from you, including the victories you experience as time moves forward.