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.

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19 thoughts on “Redefining Disability Challenge – Question 6

  1. it’s somewhat different in Canada, but not where it really matters.
    Good for you for sharing.
    I find it an awfully hard thing to talk about. There is shame where there should not be, but I constantly work to make things better and hope they will be in the future. I don’t know if that’s true.

    Liked by 1 person

    • It IS hard to discuss but we need to make people aware of the realities of the life we lead. I am not ashamed of the fact I need to rely on this system to provide the care I need, but I can see where others could feel that way. The only way we will bring about change is to keep telling our stories.

      Liked by 1 person

  2. I look forward to these posts from you and realize they aren’t always easy to write. You gave us a lot of information today, and how it affects your daily life. I am glad that NYS allows you to still be independent. However, the “red tape” involved in all aspects of health care and government regulations is amazing. Even with all those regulations, there is still abuse with the system. Perhaps if that issue was solved( the abuse) more could benefit from care programs.
    I wish others were as fortunate as you in your assistance to school, health care, and education. You are an advocate for others who haven’t had all those opportunities.
    I hope one local, state or national elected official is reading this. It deserves to be seen by so many, Great explanation !:)

    Liked by 1 person

    • I am glad you read them regularly and provide your feedback. Each state is different, so it is important to do research. I learned yesterday how generous the programs in Colorado and North Carolina are. I don’t think I’ll be building the Lotto House in New York!

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  3. Thank you for explaining the intricacies of the disability finance trap. Even though I’m in Canada, the struggle is mirrored. It gives me hope that you were able to get your masters and find employment. These concerns are with me constantly.

    Liked by 1 person

  4. This is an eye-opening piece. Thank you for speaking so openly about this. The information that you provide helps people, like myself, to have a far better understanding of what it is truly like to live with a disability, including the intricacies involved in navigating the system.

    Liked by 2 people

    • I’m glad it was helpful and informative. Sometimes I have to remind myself that just because it is my reality and a fact of life for me, others have no idea what navigating the system is like. And I didn’t even get started on Social Security!

      Liked by 1 person

  5. Thank you for explaining all this. You’re right, you live it everyday, but telling your story educates those of us who do not. That helps us advocate along with you.

    Liked by 1 person

    • When I decided to write, and share my work, I knew I would need to be honest and open. I did not appreciate how much of what I take for granted would be new information for those who do not live it every day. I’m grateful people continue to read and offer their insights and opinions. Sharing our stories helps us learn more, particularly from those who come from groups which have been marginalized or disenfranchised. We are gaining advocates. What a reason to keep going! Thank you for sharing that thought.

      Liked by 1 person

  6. (Forgive me if this posts twice.)
    Thank you for explaining all this. You’re right, you live it every day, but not all of us do. Telling your story educates people like me so I can then advocate along with you.

    Like

  7. […] jackpot for the next drawing is now estimated to be $1.3 BILLION. Yes, billion. As someone who is limited in the amount of financial resources I am able to maintain, it is difficult for me to comprehend how much money this […]

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