Most people assume that programs such as Medicaid take care of all who need their services. We assume that those who are wheelchair-bound, those suffering from debilitating diseases, and those who simply cannot live a life with the dignity all deserve without assistance, are ‘taken care of’ by Medicaid. We who assume this are ignorant of the true facts of how benefits are determined. Sometimes, most times, the caseworker never even meets the Medicaid recipient, making their life-altering decision on benefits through paperwork that details what those needs are.
Below is a letter by one person who knows how the system is failing him. Read Steve Way’s eloquent appeal to a person who never met him, yet has the last word on what benefits ‘best suit’ him.
To the person I have never met:
This letter is officially appealing your decision of denying my request for eighty-four PCA, (Personal Care Assistance) hours per week.
I would like to quote you from your decision: “Personal care assistance is for people who cannot walk, bathe, eat, dress, go to the bathroom or get out of bed without someone physically helpingthem…You use a wheelchair for mobility. You need extensive hands on help with eating, hygiene, and toileting. You also need hands on help with bathing, dressing and transfers.”
If you admit I meet the criteria, making me eligible and deserving of eighty-four hours, why deny me and give an arbitrary amount? You only increased my weekly PCA hours from forty to sixty, and that does not improve my current situation nor my quality of life.
Why is it that someone without my condition has the authority to decide how much care I need and receive? After living with my disability for over twenty-eight years, I think I have more experience in this area. If you make your decision by just reading a piece of paper and not speaking nor meeting with the individual, how can you be certain that you are making an accurate and justified assessment?
I am confused as to how writing this letter, which I can only type with one finger, will change anything. Not only does it feel degrading and nonsensical, but also cruel that I have to sell my condition and circumstances in this letter instead of having the option to meet in person so you can look me in the eye. What should I be writing about in this letter to convince you as to why I am disabled enough to deserve eighty-four hours?
Should I tell you all about my family? My mother has not worked my entire life in order to care for me, and recently had a full hip replacement. My father is forced to work two jobs to make up for it, and suffers from severe arthritis. Their physical ability to take care of me diminishes every day. My sister has to frequently come home from college to care for me and give my aging parents a break. But above all, it is not their job to continue to take of me when there are adequate resources available. Did your decision take into account their suffering and how your decision will perpetuate it?
Should I tell you all about my girlfriend of nearly five years who loves and takes care of me unconditionally? All that we have wanted to do over the past two years is live together in a place we can call our own without worry of me being completely alone. Unfortunately, because of her long work days, she is unable to fill the gaps my forty PCA hours create, and sixty hours would not fix, and there are, and would be, frequent long stretches of time when I am in my apartment alone with no help whatsoever. And just like with my parents, it is not her job to take care of me when she already has a job of her own.
Should I tell you all about my disability? Did you know that I am the only documented case in the entire world with my specific genetic mutation and location? I have not walked in almost twenty years, I cannot feed, bathe, nor clothe myself, and I cannot reach a telephone to call for help if it is more than six inches in front of me. I use a ventilator all day and night, require suction due to difficulties swallowing, and need help positioning myself in my wheelchair. Your decision ensures that there will be times where I may go without food or drink, urinate or defecate myself, or aspirate on my saliva.
But you already knew all of that. I am extremely grateful for my support system. But it is not their job to take care of me, it is yours. I am well aware of how this system works and I would love to know how much shareholders’ value will increase from denying me those twenty-four extra hours. I know how arbitrary this all is when there is a New Jersey resident receiving one-hundred-twelve PCA hours per week, yet is objectively less disabled than me. She was able to get that using political and media pressure and I hope that this case does not come to that.
However, if it does, I will be more than ready. I am done jumping through hoops and constantly being denied the bare minimum care that I need just to survive. I feel let down not being able to pursue a life with dignity when I am constantly at the mercy of people who do not even speak with me nor tell me to my face what I do not deserve.
This is only compounded by your own admission that I meet the criteria for eighty-four weekly PCA hours and I encourage you to meet with me to reconsider your original determination. I deserve to know what benchmarks you are using to make this judgment, and as the only person living with this condition, would be more than happy to advise you on what my actual needs are.