My uncle, my dad’s younger brother, is physically and mentally handicapped and has been since birth. Though he is nearly 11 years my senior, he has the mental capacity roughly of a first-grader.
My grandma (Gram, to me) once told me that the doctors told her it would be better to institutionalize him as he likely would never walk, talk or do the things that other “normal” kids did. My sweet, demure, ladylike Catholic grandma, told the doctors to go to hell.
Thus began a battle she waged until the day she died. She fought to help him walk, and he eventually competed in the Special Olympics. She fought to help him learn, and he earned a high school diploma. She fought to give him the experiences that other kids had and so he rode a bike, took swim lessons, passed the written portion of his driver’s test and started training for a job. For a time, he had a girlfriend and he kissed her. It looked for a time that he may be able to live semi-independently.
But in my uncle’s life, it has always been one step forward, three steps back. When I was starting college, he was hospitalized with a blood clot. He later needed a heart valve replacement, then another. Soon, the young man who would ride his bike for hours and swim the width of an Olympic-sized pool underwater without surfacing could not walk from the kitchen to his bedroom.
And still Gram fought. She fought doctors, hospitals, social service program workers, nurses aids and any and all other comers. Her son deserved to be treated with care and respect and she would fight to be sure he got it. The worst was dealing with the agencies that were supposed to help. She would get letters saying that his physical therapy was discontinued, his Social Security benefits had difficulties, or the nursing agency was running low on staff and couldn’t send someone when it was supposed to.
More than once she would call me and sob into the phone, “Dogs at the pound are treated better than he is. I don’t expect them to love him like I do, but he is a person. All I want them to do is treat him like a person.”
She wouldn’t cry long. Self-pity was never her style. She would get it out, square her shoulders and fight on. She fought my uncle, prodding him to walk and do physical therapy. She fought her husband, whom she adored, if she didn’t think he was managing something related to my uncle’s care properly. She fought, even as she was dying of cancer. She would sit in the recliner my dad bought her and remind my uncle, who is essentially bed-ridden, to do his exercises and mind his manners.
She fought and fought and fought and then she died.
My grandpa has now undertaken the fight. He has managed, though he is partially blind and approaching 89 years old, to keep my uncle in his home and to keep things running smoothly. He knows it is what Gram wanted and what she always fought for.
Grandpa received a letter recently from the Social Security Administration. The letter alleges that the SSA overpaid my uncle’s benefits 23 years ago to the tune of nearly $1800 and they would now like their money back. There is another matter from over 20 years ago that needs attention as well. Though my uncle is bed-ridden, with the mind of a child and unable to engage in the most basic of self-care, someone, somewhere thinks it is a good idea to pursue him for reimbursement. The notion would be laughable were it not so tragic.
I told grandpa to send me the letters and that I will deal with the benefits morass. I have done it a few times before when Gram needed the help and while this is not my area of expertise, I have inherited a fair amount of her tenacity and hard-headedness. I am a working mom of two, with more on my plate than I know what to do with, but I will take this on and keep banging my head against the walls of bureaucracy until I dent them. I will fight. I will insist that they treat my uncle fairly, that they see him as someone’s child, a person. I will fight and when I am tired or frustrated or just not in the mood to deal with it, I will think of Gram.
And then I will go another round.
The best of luck to you. Our nine year old is autistic so we know exactly what you (will) have to go through. It is ALWAYS a fight. As if these are the people somehow abusing the system… tsk! If there were so diligent with the people actually abusing the system(s), they would leave people with developmental disabilities alone. Your Gram and Eunice Shriver are lookin’ down on you and will be the angels on your shoulders.
GoodonyaTanya!
Your grandmother is very proud of you.. and so am I! And if you need someone to go with you to SSA, I’d be happy to play the bad cop for you! B
I admire your courage (as well as your Gram’s), and I wish you all the best. The whole matter is so absurd. They will waste more in time and attention to the issue than they would recover anyhow.
I just read this to my husband and he said, “Not all heroes wear uniforms.”
I still cannot believe the absurdity of even looking back through records that are that old seeking places to get reimbursed. I thought the people at SSA were all over-worked enough with their current cases.
Tanya,
You do know that one of my best friends (in the whole world) is an administrative law clerk to the Social Security Administration in Western New York, right? If you need someone to ask questions of or bounce things around, I can put the two of you in touch and see what happens……let me know.
Stay strong and keep fighting. You are in my prayers! My aunt is on Medicaid and ran into a similar problem. She didn’t owe any money but they initially refused to pay for some expenses. My father (her legal guardian) had to go in person and meet with them. He was persistent and he ended up winning. The key is patience, persistence and, like your gram said, fairness. She hit it right on the head–always make them see your loved one as a person!
Don’t forget that your senators and representative have staff to assist with this type of thing, too.