What Happened to the Redefining Disability Challenge?

If you are a regular reader here at DeeScribes (and thank you if you are!) you know for several months I was posting my responses to the Redefining Disability Blog Challenge on Wednesdays. If you are new and want to see some of these posts, I have them listed in order on a special page you can find here.

I stopped writing these challenge posts when I broke my femur in January. I decided to take a break because I needed to focus on my rehabilitation. And frankly, the next question in the post requires more research and time than I was willing to or able to invest while recuperating.

I do plan to continue with the challenge because I think answering the questions is useful for me as an advocate and writer. The challenges have forced me to consider how I view my identity as disabled, what that means, and why it has taken me almost 42 years to embrace the label with pride. The response from readers has been encouraging and eye-opening. Disability is a part of who I am. I rarely consider how my reality is different from the norm, because it is just what I have to do to get through this amazing thing called life. I never set out to write a disability blog, but I have to write about disability occasionally because it is such an important part of who I am. The challenge questions allow me to write about disability with intention, which is easier than answering a general question like, “Tell me about your disability.”

So, next Wednesday I will resume the challenge with an important question about disability and the media. I hope you will continue to read and comment on these posts. I enjoy the dialogue these challenges spark and know the questions will be fun to explore.

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Redefining Disability Challenge – Question 11

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the eleventh 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:

Free post day! Write about anything on your mind today. Any topic that the series does not cover, anything going on in your life related to disability, something you’re excited for, something you’re frustrated about.

As part of my paid employment, I frequently staff a table and provide outreach and education at a variety of community events, health fairs and senior expos. This is a busy time of year for me and I have been working at least two events each week since the end of March.

Friday afternoon a colleague loaded the back of my van with my outreach materials for the weekend. Sunday morning I drove to a local health and services fair for adults and seniors. By the time I got there, all the accessible parking spaces were taken. This often happens at these events and I am used to finding a creative parking space so I can safely deploy the ramp on the side of my van.

I parked at the end of the very last row. I exited my vehicle, popped the rear hatch and prepared to heft the outreach suitcase out of my van. That’s when I realized the suitcase was backwards.

I am only able to grab the suitcase if the handle of the case is facing me when I sit outside the door. I didn’t supervise the person who put the case in my van and never checked to make sure the case was positioned so I could get it out of my van.

This certainly wasn’t the first time I was alone and needed assistance. I have lived with disability all my life, and frequently find myself alone, physically unable to perform a task. When this happens, I usually do the following:

  1. Take a deep breath and sigh. I HATE it when this happens! Why does it always happen when I don’t have time for this?!
  2. Breathe again.
  3. Look around me for anything I can use creatively to help me get out of this situation. If something is out of reach, can I fish for it using a reacher, a stick or an umbrella? If something is too heavy, can I use something as a lever or a tool to help with the hefting? There is a reason my best friend and I call ourselves “female MacGuyvers.” I can get myself out of almost anything.
  4. Send a silent prayer out to the universe, something along the lines of, “I could really use an angel right about now!”

Without fail, as soon as I ask for help – it arrives! (Note to self….consider making #4 first on your list next time.)

Sunday morning, help arrived wearing a dark blue coat, glasses and a 10,000 watt smile. We locked eyes as she walked up the driveway towards the entrance of the community center. I called out a greeting and asked if she would be willing to help lift my suitcase out of my van. Paulette, I learned her name as she set the case on the ground, was eager to help and insisted on wheeling the suitcase up to the building. Once we were inside, she proceeded to assist as I set up my display materials, making sure the tablecloth was centered and the brochures were all facing forward.

Paulette returned  several times during the event to check on me. The first time she offered to get my coffee. At noon she offered to get me some fruit or cookies. Two hours later, she returned to make sure I didn’t need additional assistance packing the suitcase.

“Will you need me to help you load that in your car?”

I declined her offer. I had given away most of my goodies, so the case was much lighter than it had been in the morning. I zipped it up and set it on the ground, turning to thank her again for all of her help throughout the day.

“Do you need help getting that out to your car?”

I assured her I was all set, and thanked her again. I pulled up the handle, tilting the suitcase back on its wheels.

“Are you certain you won’t have any trouble?”

I stopped, giving her a wide smile and tilting my head. “Would it make you feel better if I said yes?”

She grinned back at me, a twinkle in her eye. “Yes, it would be a blessing. I know you can probably do it, but I’m honored that you would let me do this for you.”

I handed over the suitcase, reminding myself although I hate asking for help, allowing others to help me sometimes is the right course of action.

Redefining Disability Challenge – Question 8

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the eighth 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:

Is your family life affected by disability? In what ways?

I was born with my disability, so of course it has impacted my entire family. When I first thought about answering this question, I wondered what my family members would say. What is their impression of how our family life is affected by my disability? What have they learned? How have they changed over time?

I come from a large Italian-American family, a cultural background where family is more than parents and siblings. Cousins, aunts, uncles, nieces and nephews – we’re all family. I also believe friends are family you make for yourself. I am not the only member of my family (birth family or created family) who lives with disability. Down Syndrome, epilepsy, diabetes, lupus, depression, and other mental and physical disabilities – they are all present.

If you are a regular reader of this blog, you know I have five older sisters, four of whom are still living. For this week’s challenge, I asked each of them to write a paragraph or two about having a sister with a disability, and how it has influenced their view of the world. Here is what they had to say. I kept their words, even though some of them cause me to blush, but I did edit for space and clarity, and to reduce repetitions.

From Caroline:

Since I am closest to you in age I was very aware from the beginning of your need for modifications. Your frequent falls and stumbles bothered Mom terribly. She always felt so bad to see you struggle. Mom and Dad made every attempt to help you in any way they could.  They made plans to install the ramp on the back of the house because they knew you would need it eventually. They encouraged you to participate in everything.

You really began opening our eyes to the need to boycott restaurants or events that weren’t “user friendly” or accessible. Through you, we all became more aware of the needs of several types of disabilities, not just wheelchair users. When we built our house in 2008, we made sure there was a ramp out front for access, 36-inch wide doorways, as well as raised toilets and bars in the showers.  Like you have always said, someday we might need the modifications ourselves.

From Susan:

I was in college when you were born and got married the following year, before you turned one, so I never had the pleasure of spending time with you as a child as a sister would. When Mom and Dad received your diagnosis, I was beginning a family of my own and felt somewhat detached from all that was happening with you. I spent a few weeks living at Mom and Dad’s right before my son was born and then I started to get a glimpse of the reality of what life might be like for the three of you.

I feel that I have always been one who seeks to understand, but it has only been since my attendance at the Ms. Wheelchair America pageant held in NY in 2005 that I started to grasp what your everyday life might truly be like. Spending more time with you over the years has continued to increase my knowledge and awareness and I like to think it has made a difference in how I accomplish my work and in my tolerance of others.

From Donna:

When you were little, I felt I needed to help you out all the time. I learned you would tell us if you needed help, and only when you asked would I help. Although you had grown up, I would still worry about you – like when you called me to tell me you were in New York City for New Year’s Eve.

Your experience makes me look at bathroom stalls differently, thinking of you and wondering if both of us could “maneuver.” In fact, I try to look at all access points for the disabled. I consider emergency access where I work, particularly when the elevator was recently inoperable for a couple of weeks. Having a sibling with a disability has made me more compassionate to others, understanding it sometimes takes longer for a some people to move around their environment.

Because of you, I am not hesitant to approach a person with a disability and ask if they need help. Many people are afraid to do this. At a previous job, I helped a girl with cerebral palsy fill out her application because her hand shook. She got the job and we had an excellent working relationship. I felt good because I asked first, and she said yes.

From Sandy:

I think Mom and Dad struggled early on with how to prepare you for the future—even looking at how the school could be more accessible. I am sure they have had concerns at each milestone—sleepover summer camp at a young age, school, exchange program to the other side of the world at age 16, college, work, etc. In all these situations, you showed us all you could thrive and excel. You opened our eyes about the decisions you must make daily, including finding accessible bathrooms, shops, housing, restaurants, clothing, etc. Life can be difficult—for all of us—but you maneuver through the maze of finding places that welcome you and allow you to enter, daily management of personal care assistants and ongoing considerations so that you live every day fully.

I don’t define our relationship by your disability. We have always managed to find fun at outings and on trips just as any other two sisters might. My children have grown up having an aunt with a disability and have always seen the wheelchair. So for them, acceptance of your diagnosis and abilities has always been a part of their lives and they have seemed more open to being around others with similar disabilities.

Your disability and awareness of the medical and clinical world has been an asset for our family when various family members have had to deal with disabling surgeries or a difficult diagnosis. We have all leaned on you during these times and your insight and experience has guided us through some challenging events and decisions.
Sisters
My lovely sisters, long before I was thought of.

Redefining Disability Challenge – On Vacation!

This year, I have been posting my responses to the Redefining Disability Challenge (RDC) on Wednesdays. But, the RDC is on vacation until April thanks to my impending trip to Australia. I have just THREE DAYS to departure!

I thought I could do it all. I thought I could find the time to complete a post for today. I started a draft over the weekend, convinced I could get it done and edited in time for today.

Then reality hit. And I decided to cut myself some slack. Something had to give in the midst of what is turning out to be an insane week. So, the RDC post took an early vacation.

I will resume this challenge on Wednesdays in April. Until then, I hope you will stick around for the next two weeks.

I will be posting every day during my Australian adventure. I am excited to have technology which allows me to share my experiences in real time. During my first visit to Australia in 1990, my friends and I used aerograms to write letters and waited ten days for them to arrive by air mail. When I explained this to colleagues at work yesterday, I had to explain what an aerogram was to the young women in my office. Sigh. Now, twenty five years later and I can instantly share what is happening 14,000 miles away with the click of a button. It blows my mind a little bit.

In the meantime, you can read any of my past answers to earlier questions in the RDC by visiting the RDC page on my blog.

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.