Telling My Medicaid Story

For several months, my disabled peers have been sharing their personal stories about Medicaid. I read Vilissa Thompson’s story and Jensen Caraballo’s story, both published on the Center for Disability Rights blog. I watched the videos published on the Disability Rights Education and Defense Fund website. I cheered for my friend Alice Wong when her OpEd “My Medicaid, My Life was published in the New York Times.

I have written about Medicaid on this blog before. When I was participating in the Redefining Disability blog challenge, I wrote about it here, and I also wrote about how my need for personal assistants impacts my life here, and I wrote about it again here.

I wasn’t feeling the urge to write about Medicaid again but then last week happened. On Thursday, United States Senate Majority leader Mitch McConnell (R – KY) released the Better Care Reconciliation Act of 2017 (BCRA), the Senate’s version of legislation to repeal the Affordable Care Act. The majority of the bill is focused on changes to Medicaid. There are several websites that provide summaries of these proposed changes, such as HealthAffairs.org, the Kaiser Family Foundation, and NPR.

Did you catch the other big news story in US media on Thursday? Did you notice the story that appeared on CNN, MSNBC, ABC and many local affiliates across the country? The story that was later featured in Rolling Stone, TheHill.com, USNews, and Pacific-Standard among others?

For a few days this week, disability made the headlines thanks to advocates who literally put their bodies on the line. Thursday morning, in anticipation of the release of the Senate bill containing cuts to Medicaid, a group of about sixty disability rights activists gathered outside Senator McConnell’s office to stage a “die-in.”

Those gathered are members of ADAPT, a grassroots disability organization that has been fighting for disability rights since the 1970’s. What – you’ve never heard of ADAPT? Maybe you missed the 20 minutes Rachel Maddow spent on her show Thursday explaining ADAPT history and providing perspective on the disability rights movement. In case you didn’t catch it, you can watch it now. It doesn’t matter if you’re not a fan of Rachel (I’m not a fan either), just watch the video.

I am young enough to remember life before the Americans with Disabilities Act (ADA). I remember being carried on and off buses by my friends on school trips because we did not have an accessible bus. I remember taking walks and zig-zagging across the street every few blocks because not every corner had a curb cut ramp. I remember the sense of relief when I learned I could not be fired because of my need for a reasonable accommodation from my employer. I remember telling my parents about a new program called Consumer Directed Personal Assistance – a program that would allow me to hire home care workers who would assist me with my basic care needs when I was no longer able to perform these tasks independently. I remember my mother tearing up as she realized I would be able to manage my care in the community.

I live in the community because Medicaid, the program threatened by the BCRA, pays for the Personal Assistants (PAs) who serve as my arms and legs. I often tell people that my PAs allow me to be independent, but what does that really mean? Indulge me as I get to the nitty-gritty.

It means my PAs come into my house every morning and start by uncovering me when I am ready to get out of bed, and then sit me up. They move my wheelchair next to the bed then transfer me from the bed to my wheelchair using a slide board. Then they transfer me from my wheelchair to the bedside commode so I can go to the bathroom. When I am finished, they take the bucket to the bathroom where they empty it and clean it.

If you can no longer independently use a toilet, who is going to dump your bucket? Who’s going to wipe your butt if you have to use a bedpan? Who is going to try not to gag when you have diarrhea or when your period comes on heavy and unexpectedly?

When you become disabled, injured or old, your need to relieve your bowels and bladder will not magically disappear. You will still need to pee and poop. When you do go, who will help you?

Are you going to depend on your spouse? That may work if you are married to someone willing to assume the role of caregiver. Maybe you’ll depend on your children, assuming you have them and assuming they live close enough to come help you every time you need to go to the bathroom.

How many times each day do you like to use the toilet? Would that number change if you needed the assistance of another person? On good days, I use the toilet four times. Most days, it is only three. With planning, I can get by with two.

This choice – the choice to determine how many times per day I wish to urinate – is a choice I have because I do not live in an institution. I am not forced to live in a nursing home where someone is tracking the number of times I use the toilet, or how much fluid I drink and void each day. I am not viewed as a patient in need of medical care, but a person with dignity and liberty.

But without Medicaid, the funding source for long-term services and supports for millions of disabled Americans, this choice is gone. To better understand how Medicaid works to make freedom and liberty possible, read this great summary by Rohmteen Mokhtari.

Take away Medicaid and you take away our liberty. Take away Medicaid and thousands of us will face no alternative but to turn to institutional care just to meet our basic needs. I am not the only one predicting this. Read this article from The Guardian to learn how others have been impacted by Medicaid and why they are fearful of the BCRA.

I am fortunate. I have friends and family who have rallied to my side in the past when I have needed short term assistance. I have friends and peers who are willing to protest for our civil rights, who are willing to be lifted out of their wheelchairs and carted off by police. I have a platform that allows me to tell my story.

And as the late disability rights activist Harriet McBryde Johnson wrote, “Storytelling is a survival tool.”

 

 

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Redefining Disability Challenge – Question 6

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the sixth question in the Challenge. I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later. Here is this week’s question:

Are your activities of daily living affected by disability? If you’re comfortable, share a little of your daily routine.

I’ve written before about how my disability impacts my activities of daily living and my need to employ Personal Assistants (PAs). Last October I wrote a guest post for the AbleBodies blog describing how I “manage” living with my disability. The post is one of the most honest and blunt descriptions I have ever written about something many wheelchair users refer to as “pee math.” Please, click this link and read it now if you want to learn more. You can read about my daily routine in this post, and in this post you learn why I call myself the “CEO of Me.”

I don’t want to repeat what I have already written so I will use this week to speak about the financial reality of life as a person with a disability. I am writing from the perspective of someone who lives with a disability in the United States. I cannot presume to speak for others, and I am only presenting my experiences. I am not writing as an employee or agent of my employer, a nonprofit disability related organization. The views and opinions below are mine. The programs I am going to discuss are government programs, thus they have acronyms and abbreviations. I am using these, but I will define each of them.

To help explain my reality, it helps if I talk a bit about long term care (LTC). The United States Department of Health and Human Services has useful basic information about LTC on their website and it is written in plain language. You can find links to your state (if you are in the USA) and you can also find information about other topics such as considerations for LGBT adults and adults with Alzheimer’s.

LTC refers to the services and supports a person requires to meet personal care needs. This includes help with tasks known as Activities of Daily Living (ADLs) such as bathing, toileting and grooming, as well as tasks known as Instrumental Activities of Daily Living (IADLs). These tasks are the skills needed to successfully live independently, such as doing laundry, preparing food, shopping and housework. Since most LTC is related to assistance with ADLs and IADLs, it is not considered “skilled medical care.” Often this help is performed by unpaid family caregivers. According to the US Administration on Aging, unpaid caregivers provide almost eighty percent of LTC in this country. The average unpaid caregiver spends twenty hours per week providing this assistance. Twenty hours – it’s like having an unpaid part time job in addition to all your other work and family responsibilities.

There are several common misconceptions about who pays for LTC in the United States. Medicare DOES NOT pay for extended LTC. Medicare WILL pay for skilled nursing services, or rehabilitative care but generally only for a short period of time. Medicare DOES NOT pay for what is considered “non-skilled” assistance with ADLs or IADLs, which as I said before is the majority of LTC. Private health insurance, like the insurance provided by my employer, DOES NOT pay for extended LTC.

What pays for extended (longer than 120 days) LTC? Medicaid is the public option used by most people with disabilities. There are some public programs through the Department of Veteran’s Affairs or local Offices for the Aging which pay for LTC in certain populations. There are private options such as LTC insurance and annuities. I am not an expert on these and I encourage you to do your research if you feel these may be options for you as the rules for eligibility and cost vary. I know Medicaid as this is the program I have used since 2008 to obtain the services I require.

Medicaid eligibility is based on income. Each state administers Medicaid differently, so you must meet the minimum eligibility requirements in your state to qualify for services. I complain about the winter, snow and cold in New York often enough to cause people to ask me frequently why I don’t just move. The answer is simple. I stay in New York because of the relatively generous Medicaid program which pays for my LTC. I qualify for LTC through a New York State Medicaid program called the Medicaid Buy-In Program for Working People with Disabilities (MBIWPD). This program allows working New Yorkers with disabilities to earn more income than allowed in traditional Medicaid and still qualify for Medicaid coverage. Forty-five states have buy-in programs and the eligibility guidelines and rules vary by state. I will explain how I benefit from MBIWPD after I talk about Medicaid eligibility and how the rules force people with disabilities to live in poverty.

Medicaid eligibility can be complex, and is based on a number of variables such as income and resources. As a single person without a disability or dependents, using 2015 income and resource levels found on the New York State Department of Health website, I would qualify for Medicaid as long as my income is less than $1,343 per month or $16,105 annually. As a person with a disability, I would qualify if my income was less than $825 per month, or $9,900 annually. That is a difference of $518 less per month, or $6,205 less per year, due to disability.

Let me repeat that so it’s clear. To qualify for Medicaid in my state, a person with a disability is allowed to earn up to $825 per month, $518 less per month than a person without a disability.  My rent is more than $825 per month. Let’s not even discuss food, the loan for my accessible vehicle, or any other expenses. I could not live the life I lead now on $825 per month. How would you survive if your income was limited to $825 per month? What changes would you have to make?

There is a reason many disability advocates talk about people with disabilities being forced by “the system” to live a life in poverty. For many, Medicaid is the only option. Medicaid pays for goods and services people with disabilities rely on and is often the only public funding source available to provide these necessary items. Living with a disability is expensive and most people would not be able to afford care without Medicaid. Have you priced wheelchairs? The price listed on the invoice for my power wheelchair, purchased in 2012, was $33,648. And my chair only elevates, it does not tilt or recline. It also doesn’t drive me to work, or protect me in a high speed crash, like a car at half that price would. I am authorized to receive 49 hours of personal care each week. If I were to pay out of pocket for this care, it would cost approximately $20/hour. That is $980 each week, or $50,960 a year. If you were dependent on medical equipment and personal care, would you jeopardize your eligibility for the program which provides these necessities? Or would you continue on just so you have access to required care?

People with disabilities become trapped in poverty because of another reason – the asset limitation. To qualify for Medicaid, a person cannot posses personal liquid assets of more than $2000. In my bank account, at this very minute, I have $789. If my accessible van breaks down tomorrow and requires any repairs, I have no choice but to put the repairs on my credit card and pay it off a little at a time because I have no access to a rainy day or emergency fund. In 2013, 29 percent of adults with disabilities lived in poverty – twice the rate of the general population. It is hard to break out of poverty if one is never permitted to acquire assets.

Earlier, I said I benefit from the New York MBIWPD. As a single person receiving services through this program in my state, I can earn up to approximately $59,000 annually (the exact amount changes each year and is different for married individuals) and remain eligible for Medicaid as long as I meet the asset limitations. I qualify if I am employed full or part time. I am eligible for insurance through my employer, so my traditional preventive healthcare is covered by that policy and Medicaid pays for the personal care I need to remain an active member in my community.

I am grateful to have a program like the MBIWPD but using such a program comes with trade-offs. Every six months, even though I’m not sick, I must appear in person in front of my doctor so she can make sure I’m still disabled and still require personal assistance. I have had a progressive neuromuscular disease since birth, but every six months the government requires my doctor to verify some miracle hasn’t happened which would eliminate my need for care. After my doctor verifies my continued need for home care, a nurse and social worker visit me at home to assess my ability to be self-directing and to determine the number of hours of care I require. I understand my care is paid for with taxpayer money, and there must be a system to ensure the funds are not used inappropriately. Forcing me to go to a doctor, and spend taxpayer money on a doctor visit I don’t need, particularly when my disability is not going to disappear, seems like a waste.

But I play the game because I need the assistance. I grit my teeth and smile at the nurse and social worker when they ask me patronizing questions (or call me inspirational) because they are the gate keepers. They determine how many hours of personal care will be authorized. That’s the reality I live with until the regulations change or until I come into an unexpected and extended windfall of money. I accept this is the way things have to be, and I just do what needs to be done. I am a single woman who was told from an early age, “You’ll have to do well in school so you can grow up, get a good job and be able to take care of yourself Denise, without relying on anyone else to support you.” I followed those directions, went to college, got a Masters degree and have supported myself since 1996. Now, I work in a job which I enjoy, but where I earn significantly less than others with the same educational and professional background so I will qualify for the services I need. Do I like having to play the game? No. I continue to play because it’s the only way I can keep living the life I want to lead.