There are a lot of things you cannot afford on $875 per month. But according to the State of Texas $875 means you are too rich to be on Medicaid – even if you are disabled and thus by definition need medical care.
Last year, I made one of the hardest decisions I’ve ever had to make – to apply for Social Security Disability. After more than a year of struggling, I came to the hard realization that I had to accept that my disabilities prohibited me from working – or as the Social Security Administration says, engage in “substantial gainful activity.”
How could this be so everyone, including myself, asks? I am a lawyer. I am told I am intelligent and head strong, a leader with ambition and drive. I have overcome so many obstacles and given all of myself to make an impact in society. Yet, 4 autoimmune diseases, 13 chronic health conditions, and many setbacks the sobering realization that I could not give of myself anymore forced me to accepting my disabilities and need for assistance.
In December, I was found to be disabled by the SSA and given an allotted monthly allowance of $875 under Social Security Disability Income (SSDI). At first they also found me eligible for Supplemental Security Income (SSI), but then they realized I make $875 and that is more than the $721 you can get through SSI. In other words, I am too rich for SSI and thus Medicaid in Texas.
Texas has refused to expand Medicaid for years. Ironically, in 2009, I worked for State Representative Garnet Coleman who was fighting to expand Medicaid for the adult poor in Texas. He has continued this fight as have many advocates in Texas. But Governor Rick Perry along with right wing conservatives refuse to assist those in most need at the expense of around 687,000 women and in a state with the largest uninsured population. As it stands in Texas, Medicaid is only available for children whose families income and resources lie at 100% of the Federal Poverty Limit (FPL), women who are pregnant, and disabled individuals on SSI. I am not a child, I am not pregnant, and I do not qualify for SSI. I am left without healthcare when I need it most.
But let’s put this in the broader picture, because this isn’t just about my ineligibility to receive medical care. The relegation of a disabled person to $875 per month has ramifications for food stability and affordable housing among other issues impacting health.
Around the country, there is insufficient affordable housing, and in Austin the problem is worsening. This city is growing by leaps and bounds; new apartments and homes are under construction everywhere. But they aren’t affordable and the city doesn’t really ask the companies who own them to provide affordable units. Apartment complexes that do have units sectioned for low income individuals and families having long waiting lists, the Housing Authority of the City of Austin has closed its wait list for single bedroom apartments, there is no Section 8 housing. In other words, there is nowhere to go.
The average rent in Austin climbed 5.7% last year to almost $1,020 for a one bedroom apartment. My rent – $875 per month. And though I qualify for some rental assistance through Travis County Health and Human Services grants or other programs – Greystar owned City View Apartments will not accept such rental assistance (they should be ashamed of themselves). The threat of losing my home is real every month. And as research has shown, stable, affordable housing has an effect on individuals with chronic illnesses.
Food stability remains another challenge. I have been on food stamps for a few years now (as I accidentally revealed in this interview). At the most, I’ve received $200 (the upper limit in Texas for a single person) and at the least a measly $15. For someone with Celiac Disease who has to eat a gluten free diet, I assure you this money does not last until the end of the month. Gluten free foods while a choice for many are an imperative for me and they are expensive.
Interestingly, this month Health Affairs published a study on the consequences of food budgets not lasting until the end of the month revealing that hospital admissions for hypoglycemia (severe low blood sugars) were more common in low-income population at the end of the month. In fact, admissions increased 27 percent in the last week of the month – the same time when food stamps have all been spent. For a type 1 diabetic such as myself, this hits home. Being able to eat healthy (gluten free) foods can have major consequences for my blood sugars. (The blog Health Populi has a great post on this.)
Food prices are increasing. Just today at the store I saw that a gallon of milk (not the organic or even the store brand but the cheapest brand) went from $2.98 to $3.03. While 5 cents might not matter to most, I spend time cutting coupons to save even 20 cents because every cent matters. In fact, I’ve been known to count pennies at the checkout line to purchase a few items at the end of the month to the great annoyance of those lined up behind me.
And while we talk about the importance of food stamps (and why it matters that Congress not cut funding), we forget what food stamps don’t buy. As Eminem rapped “these g**d**m food stamps don’t buy diapers.” He’s right, food stamps don’t buy toilet paper or shampoo, they don’t by allergy medication or laundry detergent, they don’t buy tampons or hand soap, they don’t buy dish soap or toothpaste. Honestly, I’ve almost been thankful I’ve been in the hospital at times because I eat better there and I can go home with a tube of toothpaste and a small bottle of shampoo/body wash (yes it doubles as both in the hospital). One’s hygiene is at stake when you only get $875 per month.
I do however qualify for many of the prescription assistance programs offered by various pharmaceutical companies. I found each program through NeedyMeds.org which links to each drug and each company’s application. GlaxoSmithKline, Eli Lilly, Sanofi Aventis, AstraZeneca (though they tried to deny me – see my open letter to them), Merck and others – each one, just like each assistance program from the County, State or Federal Government – with its own requirements, its own documentation. Each one taking patient and diligence to navigate. Still there are no programs to cover the syringes I need to take insulin. There aren’t programs to pay for the $80 inhaler I need, antibiotics previously prescribed, or a flu shot. Another reminder that there are huge gaps in our system for providing individuals healthcare, for ensuring a right to health.
I went to law school to find a career making a difference in this world. I thought it would lead to great opportunities for me to advocate through law. I thought I would find myself financially stable and with insurance. I did not think that I would find myself here – advocating for myself and learning firsthand what I started off wanting to change for others.
When one falls – leaves behind what they once expected – a new world is opened, a world unseen to most. Every day becomes a fight to breath, to seek resources merely to survive. I am fortunate in the respect that my education allowed me to research resources and to navigate the complexities of convoluted systems. I am lucky to have had help from those who could give at times I most needed help.
Most aren’t so lucky. Sadly, many cannot advocate for themselves and those meant to support the needy including social workers, case managers, doctors, and nurses often do not know how to help. They don’t realize the barriers many face, or even which resources might be available. When I met with these people, I often ended up educating them on resources they’d never heard of (such as NeedyMeds – which almost none know about). Particularly in the medical profession, I found it my responsibility to open up their eyes to the realities of poverty.
Who then will help the millions more like me? Those who are disabled or who have faced their own challenges rendering them without through no fault of their own? Perhaps they were thrown into bankruptcy because of medical bills or lost a job in this difficult economy? Perhaps they lost their home to fire started by a spark in a draught caused by climate change? Perhaps it is the result of what Paul Farmer and others term “structural violence” or “the historically given (and often economically driven) processes and forces [that] conspire to constrain individual agency”? The reasons are endless but all result in inequality, struggle and pain for those affected who are left with little help and often no voice.
I do blame myself even when others assure me that this is not my fault. Our society (primarily conservatives) demands that we take responsibility for our circumstances – and I am honestly not proud of mine. I often feel that I have lost myself along the way and found that with $875 one cannot afford much dignity.
But if I were to be hopeful, which I generally am not, I might see that this time on disability could merely be a point of rest, to allow myself time to regain my strength and the resiliency it takes to face the challenges of my everyday life and of the future. It could be living through these experiences will give me a unique insight in how to bring about the change most desperately needed to realize health as a human right for all. In the meantime, I am lucky that I am able to write, tweet, and sometimes speak about my experiences. And even if I cannot engage as I once thought I’d be able to, if I can continue to advocate in any small way to further the ideal of health as a human right, I will do so. And I will start by offering you, with great vulnerability, my story.