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, 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,, 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.”



Furrry, fuzzy baby penguin chick holding a bouquet of pink roses.

I’m Fine Without a Valentine

If you ask my closest friends, they will tell you I am a romantic. Of course, I will deny it at first, even though deep down I know it’s true.

I love love. I love doing nice things for those I love. I love giving unique gifts I know will be loved and appreciated by the recipient.

But I don’t love Valentine’s Day.

It’s not because I have spent the vast majority of Valentine’s Days without a romantic love. Granted, this will be the 24th Valentine’s Day since I was 18 years old and I have only had a romantic love for 4 of those days.

Yes, I love having a romantic partner when that is a part of my life. It is thrilling to have someone who honors your vulnerability and likes you anyway; someone who shares intimate secrets and sends your dopamine levels soaring with compliments and kisses.

However, my self-worth has never been tied to having a romantic relationship with a man. I have always been comfortable on my own, not really able to understand those people who felt like they needed someone to “complete them,” or make them “whole.”

Some of my friends tell me it’s just because I haven’t met my “soul mate,” the person I am “supposed to be with.” They tell me to just hang on and when the time is right, “Mr. Right will come along.” What if I’m alright without a Mr. Right?

My dislike of Valentine’s Day is not because I have not been exposed to extended romantic relationships. My parents celebrated their 63rd anniversary last July, six months prior to my father’s death in December. My grandparents, aunts and uncles, sisters and brothers-in-law, many friends – all examples of strong marriages and relationships I am blessed to witness.

I certainly don’t dislike Valentine’s Day because love is absent from my life. I am fortunate to have a wide circle of support, love and affection from a variety of friends and family. These connections are central to my feeling of well-being and happiness. They sustain me when times are challenging and help me celebrate the good.

Maybe my dislike of this day meant for lovers stems from the fact that even if I found romantic love and wanted to get married, marriage is not a realistic option for me due to my disability and my need for long term care. Like most people who receive home care for an extended length of time, I rely on Medicaid to pay for my Personal Assistants. Thanks to the New York Medicaid Buy-In Program for Working People with Disabilities (MBIWPD), I am allowed to work and earn more income than allowed in traditional Medicaid and still qualify for Medicaid coverage.

Medicaid eligibility can be complex, and is based on a number of variables such as income and resources. It also varies from state to state. 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. However, as a single person receiving services through the MBIWPD in my state, I can earn up to approximately $60,000 annually (the exact amount changes each year) 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. Insurance does not pay for long term care though. Medicaid pays for the personal care I need to remain an active member in my community.

But if I marry? A married couple can only have a joint income of approximately $81,000 annually to qualify for services.

I am authorized to receive 70 hours of home care each week. If I were to pay out of pocket for this care, it would cost me approximately $20/hour. That is $1,400 each week, or $72,800 a year. Just for personal care. That is more than my current annual salary, since I cannot earn more than $60,000 and still qualify for home care.

I have always said I will never put myself in a situation where my safety and security are dependent on another person. Part of it is my own independent stubborn streak, and part of it comes from conditioning from my parents who told me repeatedly as I was growing up how important it is that I be able to take care of myself. If I were to marry, I would need to find another job with a higher salary to cover the cost of my care, never mind my living expenses.

Sure, I could find a job that pays more than $100,00/year. Those jobs exist. I have the degrees and skills to be successful at those jobs. But as much as I complain about playing the Medicaid game (proving my disability every six months, tolerating the home visits from nurses and social workers to assess my needs), I play it because I need to. I am dependent on these services to live independently in my community where I am loved and valued, and can give love to those who are important to me.

That’s the love that matters most to me.

However, if anyone has any leads on “Mr. Right,” I’m not opposed to having some fun… 😉

Redefining Disability Challenge – Question 41

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

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

I hate winter weather. I despise being cold. It causes physical pain when my feet get cold, and they are almost always cold from November to May each year. I dislike having to drive in snow with other drivers, most of whom never seem to remember to be cautious. I can’t move my arms if I have to wear bulky sweaters and jackets. Every movement requires more energy and takes more time.

My friends and family know I hate winter. I do my best not to complain. However, it is a safe bet I will put on a bright face in public yet privately curse the cold in my head for months on end. I spend far too much time and energy being miserable about something I cannot control – a behavior I routinely advise others to avoid.

Why do I stay in upstate New York where I am miserable due to weather for six months of the year? Wouldn’t it just make sense to move to a warmer climate?

I stay in New York for many reasons. My elderly parents live in New York, and I like being able to get to them within a couple of hours if needed. Most of my other family members live in New York, and they are part of the support network I rely on to live independently. But the main reason I continue to live in New York is because my disability requires me to use personal assistance to be independent, and New York has one of the best consumer directed personal assistance (CDPA) programs in the United States.

As I have mentioned in prior posts (you can find three of them here, here and here), I rely on the Personal Assistants I employ through CDPA to perform daily tasks most nondisabled people don’t think about. Each day, these dedicated women get me in and out of bed, help me on and off the toilet, assist me with showering and dressing, style my hair, prepare my food and clean my house.

If you required this level of assistance to meet your basic needs, and could not afford to pay for them out of pocket (private health insurance does not pay for long-term home care), you would want to live in a state with good services. I have decided to tolerate single-digit Fahrenheit temperatures and below-zero wind chills because I do not have $50,000 to spend on my personal care each year and I want to have control over how and when I receive my care.

In the United States, most people who require long-term home care rely on Medicaid to pay for care. Some states do not offer self-directed services to Medicaid recipients. Some states have waiting lists for home care, forcing people to remain in institutions. Some states limit the number of hours or care a person can receive. Most states limit the amount of income a person can earn and still remain eligible for CDPA through Medicaid.

New York has a comparatively generous Medicaid Buy-In Program for Working People with Disabilities. As a single person, I can earn almost $60,000/year and still remain eligible for CDPA. There are very few states which permit that level of income while retaining services.

I am not saying New York is the best state in the nation. There are many reasons to want to leave. But when it comes to how I live my life, there are many reasons I stay.

Even if it means another day of freezing cold. Spring is only three months away. I can make it.

Unless I win the Powerball tonight. Then all bets are off because the meteorologist just said it is 6° Fahrenheit this morning and I’m cold.



Redefining Disability Challenge – Question 33

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

How has your life changed as a result of your diagnosis?

I have had my diagnosis since birth, so I don’t have a concrete “before/after diagnosis” answer to this question. Disability has always just been one component of my life.

Think about something you were born with – something you cannot change or control. Maybe you are left-handed. How has your life changed as a result of your handedness? Do you ever stop to think about that?

Maybe you were born farsighted and are unable to see close objects clearly without corrective lenses. How has that changed your life?

Maybe, like me, you are the youngest child in a family of six girls. How has that lifelong experience shaped your existence?

I rarely stop to consider how my life is “different” or changed due to my diagnosis because it is just the way life IS. I don’t know any other way.

Granted, when I was younger I was able to walk short distances. So, I can relate to those who lose function or become disabled. I can understand the sense of loss and the anger as you adapt to a new reality which does not include abilities you had yesterday, last week or last year. My degenerative neuromusclar disease grants me that learning opportunity on a regular basis. Let’s call it a form of continuing education.

This is not to say disability does not impact my daily life. Of course it does. Here are some examples of how my life is different from some other women my age because of my disability:

1. When I go on a date with a man, it is safe to assume he will ask me if I am able to have sex.  Usually this question happens on the first date. If a man asks me this question on the first date, chances are pretty good my answer will be, “Yes – but not with you.”

2. I remain employed at a job which pays me less than I am capable of earning so I can receive the home care I require to live independently in the community. This forced poverty is the result of antiquated laws related to disability and Medicaid, the publicly funded program which pays for home care. For a full explanation of this, read this post from earlier in this challenge.

3. I own a modified minivan so I can transport my power wheelchair. If I did not require an accessible vehicle, I would own a cute, red, energy-efficient car.

4. I make choices each and every day which the nondisabled never consider.  I make decisions about transportation based on disability. When I go to conferences and conventions, I select where to sit based on wheelchair access and table leg placement. I use a complex system of “pee math” to regulate how much fluid intake I consume throughout the day so as to avoid needing to use a restroom at a time when I do not have a Personal Assistant scheduled. When walking down the street with friends, I am constantly scouting the sidewalk ahead for potential obstacles. I plan my food preparation to occur when certain Personal Assistants are scheduled because I know they have the skills required to complete the task without constant supervision.

5. Precious little in my life is spontaneous since I rely on other people to complete basic tasks like getting out of bed, showering, going to the bathroom and getting dressed.

6. My unobligated time each week – all 25 hours of it – is a valuable commodity and I do not squander it on anything which does not add value to my life.

I am not complaining about any of this. I have a blessed, rich and purposeful life. I am grateful for the disability which has afforded me so many opportunities I otherwise would have missed.

Besides, if I didn’t have my disability I’d probably have to take the stairs like all those other nondisabled folks who aren’t lazy like me 😉

Redefining Disability Challenge – Question 26

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

What barriers do you encounter in your daily life when it comes to disability?

I have tried to structure my daily life so I face very few barriers. However I live in a world designed for people who walk, people who have muscular strength, people who can climb stairs and navigate uneven surfaces, people who can reach above their head. The physical barriers are real, and they do present challenges. But, when I think of true barriers to equality what comes to mind are the financial sacrifices I must make due to my need for personal care.

Since I rely on Personal Assistants (PAs) to assist me with the tasks of daily living, I am beholden to the system which makes this assistance possible. As such, I must comply with rules which limit my financial independence and self-sufficiency. I have written about this before in Redefining Disability Challenge Question 6 which you can find hereYou should go read that post now if you haven’t already to get an idea of what I mean. I’ll wait. It’s important background information.

I am fortunate because I have been employed full time in four occupations since I finished my Master degree in 1996. I enjoy my current job and find it very rewarding. Yet, I know I could do more. I remain at my job, a position for which I am over-qualified, because it does not pay me at a level which will make me ineligible for Medicaid, the publicly funded program which pays for my personal assistants. 

Like most adults with disabilities who depend on Medicaid, I do not have an emergency fund. In order to qualify for Medicaid, I am not allowed to have more than $2000 in liquitable assets. This forces me, and others like me, to rely on credit cards or the kindness of others when emergencies occur.

Cars break down. Microwaves stop working. Wheelchairs and durable medical equipment need repairs.

Life happens. When it does, I am forced to pay for it using a credit card. This means I am paying for the emergency over an extended time and paying more than the true cost because of course I don’t have an emergency fund to pay off the card before the interest gets tacked on to the purchase. If I were allowed to have a job which compensates me for what I am worth without losing my personal care, I could develop an emergency fund and pay for these things with the fund rather than a credit card!

The assistive technology and equipment which make it possible for me and others like me to function are wonderful, but they are expensive. Modified vehicles cost two or three times more than standard vehicles, depending on the technology needed by the driver or user. Durable medical equipment purchases for things I require, such as a tub transfer bench and bedside commode, were not approved by Medicaid or my insurance. I guess because the ability to bathe and go to the bathroom were not deemed medically necessary. I pay for other necessities which I use daily such as baby wipes, the device which makes it possible for me to wipe myself after I go to the bathroom (my PAs refer to it as “toilet tongs”), disposable gloves for my PAs, and the reachers which help me independently activate the button to release my wheelchair from the van restraint system (quite possibly, the MOST important tool I own). While not expensive individually as purchases, these add up over time.

Whenever I travel, I must pay for at last two of everything so I can bring a PA with me. This doubles the cost of every trip, which is why I haven’t taken many since I began using PAs. Without the generosity of many friends, family members, multiple Rotary Clubs and strangers, I would not have fulfilled my dream of traveling to Australia in March. There was no way I could come up with the extra $3000 required for another person to travel with me, because I am not allowed to have a savings to make these opportunities possible and I cannot accept a job which pays me thousands of dollars more than I currently make.

I use these real world examples to show the reality of what it is like to live “in the system” as a woman with a mobility impairment, not because I am looking for financial assistance. I am NOT looking for a hand out. I work within the system to the best of my abilities. I live simply. I budget. I follow the rules. I pay my bills and I am not lacking for anything I require.

But I am not financially secure. And neither are millions of other people like me. We do not have true financial independence, because the antiquated rules do not allow us to fully prosper.

That barrier is what truly makes it impossible to achieve full equality.