The complexities of state-enforced poverty and lack of access to care for rare and complex medical conditions
I can’t give more specific personal details than what I provide in this document. If I were to do so that would put me at risk of losing benefits and of being forced to repay previously received benefits if deemed that I wasn’t eligible for those benefits when I received them. Why? Because something as seemingly harmless as writing a long, detailed, and precise document — no matter how many days this has taken me to write — can be considered evidence that I am not disabled.
I know what I’ve written here is very long and that as such, there’s a good chance you won’t read it or may only skim it, but I think that it’s important to include all of this as most people do not understand the complexities of state-enforced poverty and lack of access to care for rare and complex medical conditions.
Abbreviations Used Within
- ABLE account: Achieving a Better Life Experience account (aka a 529 ABLE or 529A)
- “Fed” or “Feds”: Federal government, consisting of the many departments, the Supreme Court, the House, the Senate, and the President.
- HUD: U.S. Department of Housing and Urban Development
- PPO: Preferred Provider Organization
- SNAP: Supplemental Nutrition Assistance Program
- SSDI: Social Security Disability Insurance
- SSI: Supplemental Security Income
A few facts about me. I’m in my 40s; I’m queer and trans; and I was born disabled. However, I experienced medical neglect from my parents and didn’t begin receiving anything that resembles the care that I need for my rare and complex medical management until a mental health crisis hospital suggested I apply for Supplemental Security Income (SSI — Social Security “disability” for people who haven’t earned enough to qualify for Social Security Disability Insurance; read about the difference between the two here).
In 35 states and DC, if you receive SSI, you are automatically provided with Medicaid. When I first received SSI in my early 20s, I was lucky enough to be living in one of those states and so didn’t need to apply separately. Medicaid began providing me with some of the care I needed (and need), but I didn’t receive an accurate diagnosis for my genetic condition until I was in my late 30s. This impeded my access to care.
The argument of “just get on Medicaid and you’ll be fine” is a fallacy: Medicaid recipients find it nearly impossible to get all the care they need, for several reasons. Healthcare providers who accept Medicaid receive lower payments than for private insurance, meaning less income, meaning many take on more patients than they can handle to make up the difference. This means people on Medicaid experience a lower quality of care. Most Medicaid providers focus on generalized medicine and not rare diseases/ conditions. People with Medicaid insurance, then, need to look out of network or pay out of pocket if they have complex medical issues. For example, to have my rare conditions treated, I must see three separate providers, one of whom costs $530 per half hour out of pocket and another who costs $575 for fifty minutes out of pocket; there are no equivalent providers practicing in these specialties who accept Medicaid. Additionally, Medicaid does not provide reimbursement for care accessed outside of their network.
Though I receive Medicaid, most of what my doctors would like for me to do in terms of treatments, surgeries, specialists, certain medications, etc., is not covered by Medicaid. If I were to pay out of pocket for what my doctors recommend, I would be easily spending $60,000 per year on medical expenses alone.
Private Health Insurance
As many patients with more complex or rare conditions are familiar, most of the providers I need for my complex and rare conditions do not accept any insurance. Therefore, “simply” buying private insurance is not a true solution.
If I were to purchase private insurance on my state’s Health Exchange, I would retain Medicaid, which would be beneficial as between 2015 and 2021, Medicaid paid an average of $22,900 per year to my providers. (This does not include medications prescribed or administered; I couldn’t find data for that.) If I purchased private insurance on the Exchange and retained Medicaid, those costs would still be covered by Medicaid in the future (at no cost to me).
If I purchased a PPO plan from the Exchange (which costs an average of $600 per month or $7,200 per year), then I would be able to submit only some of the recommended care costs for reimbursement. Extensive talks with a health insurance navigator yielded that of the $60,000 in recommended care, after meeting my (very high) deductible I would be reimbursed approximately $20,000. Which means that with the cost of private health insurance, I’d be paying a total of $66,200 and reimbursed less than half that. To be reimbursed, first I would have to pay the bills, which means having the money to pay $66,200 in medical expenses per year. As this essay details, this is money I don’t have, and am not allowed to have.
Disability, Income, and State-Enforced Poverty
As I said, I’m in my 40s. I started trying to work when I was 16. Since then, I’ve earned $23,276 — over 25-30 years. That’s somewhere between $931.04 and $775.86 per year, which means always living below the (pathetic) amount the Feds consider to be the poverty threshold or guideline. According to the US Census Bureau, in 1995 the poverty threshold for one person was $7,763. In 2021, it was $13,788. But assistance programs use a different number (not one from the US Census Bureau, but one from the US Department of Health and Human Services) to determine poverty guidelines. According to the US Department of Health and Human Services, the poverty guideline for one-person last year (2022) is $13,590. Who can live off that? According to MIT’s Living Wage Calculator, one person would have to earn at least $22.07 per hour and work 40 hours per week, (for a total just over $44,000.00 per year) to survive in the city where I live — without having unusual costs (such as health care).
According to the Economic Policy Institute’s Family Budget calculator, the following monthly costs are average for my region for a household of one adult and no children.
- Housing: $1,591
- Food: $335
- Transportation: $721
- Health care: $296
- Other necessities: $698
- Taxes: $782
Subtotal: $4,423 per month
Total: $53,074 per year
As stated above, my health care costs are significantly higher, which makes my monthly expenses, if I take into consideration what my health care providers recommend, a lot different than that which the Economic Policy Institute estimates.
- Housing: $1,591
- Food: $335
- Transportation: $721
- Health care: $5,517
- Other necessities: $698
- Taxes: $2,127
Subtotal: $10,989 per month
Total: $131,868 per year
I have not been able to work more (earn more) because I am disabled and am limited by what I can do and how much I can do.
The combined effect of all my disabilities means that I spend a minimum of 15 hours per week attending and commuting for medical appointments. I easily spend another 30 hours per week recuperating. There are 168 hours in a week and 56 hours are spent sleeping. With my health the way it is (unpredictable and without stability), I am unable to maintain a set schedule. Due to fatigue and pain, I can work maybe 3 hours per day on days that I don’t have medical appointments for which I need to commute. That leaves me with 3 hours per day on 3 days per week within which I could work. Let’s push it and say I can work 40 hours – in a month.
All of this means that if I must buy private health insurance, I’ll have to be paid $274.725 per hour.
I have a GED and I am about 15 credits shy of an associate degree, which I will never be able to achieve because my neurocognitive impairment (memory) is such that I don’t retain information, and thus, am no longer able to pass college classes.
$274.725 per hour at 10 hours per week. That’s doable, right?
I’m told that if I were to access the care that is being recommended to me that my condition would improve and would enable me to work (earn) more. But how am I supposed to access the care I need to get to that point? And no, most healthcare providers do not offer sliding scale or hardship cases, and there are no patient assistance grants for the care that has been recommended to me.
I’ve worked with patient advocates, and they have closed my case over and over because there are no ways of funding what I need. It has been recommended to me by patient advocates that I try GoFundMe – for $80,700 ($14,520 to taxes as GoFundMe money is taxable) plus the cost of GoFundMe’s fees. I am pretty much a nobody on the internet, so raising $80,700+ for a year of care is simply not going to happen.
The more time that passes in which I don’t get the care that I need, the more my condition deteriorates. The more it deteriorates, the more I must rely on what little is available to me from the state (and by state, I mean government – local, state, and federal). What’s available isn’t much, and what’s available has severe income and assist restrictions.
Temporary Disability Benefits and Supplemental Security Income (SSI)
I first began receiving SSI over 20 years ago. You can learn just how much SSI paid then, and continues to pay over the years, via this handy chart from Social Security.
In 2022, people on SSI received a maximum of $841 monthly from the Feds. I write “from the feds” because some states provide SSI recipients with extra cash; in many of those states the supplement is contingent upon the recipient residing in a care home or assisted living facility so that they can afford those options.
Some years after beginning to receive SSI, I made a mistake: I got married. My then-spouse made $100 more than was allowable income to keep receiving SSI. My SSI was terminated. My then-spouse and I have since divorced and I have re-applied for SSI.
I received temporary disability benefits ($300 per month in 2022) for six years while awaiting the final decision on my SSI case. I was lucky; not every state offers this benefit. While receiving temporary disability benefits, I could not have any income over $185 per month or assets over $1,500 (income includes selling your own personal items, gifts, and other forms of support) or I would be disqualified from receiving this benefit.
If I had won my SSI case, then I would receive up to $914 per month (in 2023; this number is annually adjusted). I would then be able to work but I would only be able to earn $1,470 per month and have $2,000 in assets outside of my ABLE account before I would lose my SSI benefit. While benefit amounts are decided upon on a person-by-person basis, asset amounts and income limitations apply to everyone. Receiving SSI would maintain my eligibility for full Medicaid; however, it would reduce my SNAP benefit to around perhaps $50 per month.
Receiving temporary disability benefits is what ensured my qualification for SNAP benefits; having lost my temporary disability benefits for having lost my SSI case, I am now ineligible to receive SNAP once my current enrollment period ends in May.
SNAP Benefits (Food Assistance)
While my federal disability case with the Social Security Administration has been pending for the past six years, I have been able to receive the maximum federal allotment of SNAP benefits per month, which is currently $281. However, the average SNAP recipient only receives $195 per month, due to how drastically SNAP benefits are reduced with income (including “unearned income” such as disability benefits).
According to the U.S. Department of Agriculture’s (which controls the amount of SNAP benefits) Thrifty Food Plan (which has not been updated since 2021), a single person my age should be able to survive with food costs of only $53.40 per week ($7.62 per day). Can you meet your nutritional needs for only $7.62 per day?
In the decade or so before the pandemic, “SNAP benefit challenges” were a common awareness tool undertaken by folks, including politicians, to discover how hard it is to live while eating on the Thrifty Food Plan. Common findings for folks eating by the Thrifty Food Plan for only a week are fatigue, irritability, weakened immune systems, frustration, stress, and social isolation. I couldn’t find any evidence of SNAP challenges taking place during or since the pandemic, likely because food prices have begun to increase and vary widely.
Food prices differ greatly by geographical region. In my area, the current recommended amount of money for one person to eat 2400 calories per day is $14.26 per day, nearly double the USDA’s $7.62. The $14.26 needed comes to $441.99 per month. This means that SNAP benefits in my region are approximately $160.99 shy of the amount needed for food per month.
As the Social Security Administration ruled that I do not meet the disability requirements for Supplemental Security Income (SSI) benefits, the SNAP program will stop considering me to be disabled as they only consider someone to be disabled if they receive disability benefits. I am about to lose my access to SNAP benefits for three years because unless deemed disabled by the SSA or a similar administration, recipients can only receive SNAP benefits for three months out of a three year period.
After three years, I would again be eligible to receive SNAP benefits if I work “at least 30 hours a week (or earning wages at least equal to the federal minimum wage multiplied by 30 hours).” The federal minimum wage is $7.25 per hour, so at 30 hours that’s $217.50 that must be earned, at minimum per week, to continue receiving SNAP benefits. If I don’t meet the general work requirements, then I am “disqualified from getting SNAP for at least a month and must start meeting the requirements to get SNAP again.” If I “get back on SNAP and then don’t meet the requirements again,” then I am “disqualified for longer than a month” and “could be disqualified forever.” Again, with my disabilities, I at best can work 40 hours per month, or about one-third of the time needed to be eligible for SNAP.
I currently receive my state’s general Medicaid plan. To receive Medicaid, my state’s income limit for a single person is $1,550 per month. There is no work requirement. However, to receive Medicaid for the “Aged, Blind, or Disabled,” which is the Medicaid plan assigned to recipients of Supplemental Security Income (SSI), the income limit is $350 per month. I must also keep my income under $350 per month to continue to qualify for in-home help from Medicaid (Medicaid pays for a personal care attendant to assist me with my “activities of daily living” for approximately 23 hours per week as I am unable to meet these needs on my own).
If I were to earn more than $350 per month, I would qualify for the plan my state has which allows disabled people with disabilities recognized by the Social Security Administration to earn up to $3,000 per month before Medicaid coverage is terminated, but in so doing I would lose the assistance I receive from Medicaid’s provision of a personal care attendant. And since I did not win my SSI case, I don’t have a disability recognized by Social Security for my state to allow me to earn up to $3,000 per month — I’m stuck at up to $350 to keep my personal care attendant.
And I need a Personal Care Attendant
If I were to pay for a personal care attendant myself, I would have to add that cost to my monthly expenses (and thereby increase how much I would have to earn per hour). Where I live, Medicaid pays in-home aides $16.50 per hour. However, that is not a just or equitable rate considering the cost of living in my area. Using MIT’s Living Wage Calculator’s estimate of $22 per hour needed for a living wage in my area, I would then pay my aide $22 per hour for 23 hours per week, which equals an additional $2,204 per month or $24,288 per year. Then, my budget would be the below.
- Housing: $1,591
- Food: $335
- Transportation: $721
- Health care: $5,517
- In-home health aide: $2,204 (added to budget)
- Other necessities: $698
- Taxes: $4,555 (increased from $2,127; my tax bracket rises from 24% to 32%)
Subtotal: $15,621 per month (increased from $10,989)
Total: $187,452 per year
Only being able to work 40 hours per month (with my aide, ironically, working 92 hours per month to support me) means I would have to earn $390.53 per hour, which would make me ineligible for all forms of assistance or support from the government.
To qualify for an ABLE account, one must meet the qualifications for SSI or SSDI and have your disability onset before the age of 26 (in January 2026, the eligibility for age of onset will change to 46).
If you’re lucky, the money in your ABLE account may gain a small amount of interest.
The true benefit to having an ABLE account is that, for the most part, money in ABLE accounts is not counted as an asset for federally-funded means-tested programs – to a point. You can have $100,000 in your ABLE account before losing eligibility for SSI, however some states have larger limits (such as $500,000). Note: this is the amount one can have in the account over the lifetime of the account holder, not the amount that can be held in the account at once.
Only $17,000 (as of 2023) can be added to these accounts per year. If you’re actively using them to pay for your qualified disability expenses, then it’s basically money-in/money-out, like a checking account, and you are unable to grow interest as a result.
If you’re working, you can have your employer (so this doesn’t really work for self-employed people) route part of your paycheck to your ABLE account: up to $12,888 per year, but only until 2025. In 2025 the ABLE to Work Act will expire and unless extended, working people with disabilities will no longer be able to add this amount in addition to the yearly $17,000 deposit limitation.
Interlude: Other Programs and A Personal Note
I receive assistance from other programs, too, such as the Housing Choice Voucher program (formerly called Section 8) from HUD, which pays all but $50 of my rent.
There are programs such as “Special Needs Trusts” which are great if you have someone with a lot of financial assets who wants to give them to you, but I don’t have that in my life.
There are programs in some states that provide free or financed adaptive equipment and home modifications.
There are other forms of disability insurance such as SSDI, private disability insurance through employment or self-purchase, disability pensions from some employers, and loads more particularly if you’re under the age of 22 or 18 — I don’t qualify for any of these.
There are also programs such as vocational rehabilitation, which help disabled people prepare for and find employment, sometimes by paying for higher education and job training. (They did a career assessment for me and deemed I should be a blogger: that hasn’t exactly paid off).
There are all kinds of patient assistance programs, but most of them require that you have private insurance to access them.
In short, there is some assistance out there — and more so, assistance that most people don’t know is available to them — but it’s not enough to get by. I could go into more detail but frankly, I’m burned out.
Most of this writing has been pieced together from things I have previously written over the past few months, as I’ve tried to figure out how to save myself. (Answer: I can’t.) And so, on to the end.
Conservatives love to make the argument that people milk the system and so legislation must continue to make it very difficult for people to access what state social support is available. Is there fraud? Sure. But fraud and ridiculous overspending at the top (committed by members of the federal government, such as that which continually takes place at the Pentagon) amount to billions, if not trillions, of dollars.
Using the federal government budget of 2019 (I’m using 2019 because many programs were temporarily supplemented for the pandemic), here’s the breakdown of what was spent by the Fed:
- $1,225.3 billion in Health Care
- $1,103.1 billion in Pensions
- $949.9 billion in Defense
- $363.4 billion in Interest
- $352.3 billion in Welfare
- $112.5 billion in Education
- $110.1 billion in Other Spending
- $94 billion in Transportation
- $65.2 billion in Protection
- $30.9 billion in General Government
Breaking down the $352.3 billion in “Welfare,” the Fed spent:
- $268.6 billion in Family and Children, including $83.5 billion for food and nutrition assistance, of which $60.4 billion was for SNAP and $41.2 billion for Supplemental Security Income
- $33.3 billion in Unemployment
- $4.4 billion in Workers Compensation
- $46.1 billion in Housing
If even half of what is spent on Welfare was to be considered “fraud,” that would still be only $176.15 billion, which is still only 18.544% of the entire Defense budget.
(“Social Security” aka Social Security’s Old-Age and Survivors Insurance and Social Security Disability Insurance, is listed under Pensions, not Welfare, because it is financed directly by taxing the income of workers – it’s our own money. And as an aside, unless payroll taxes for Social Security and Medicare are raised 3.6% or corporate or wealth taxes are raised, “Social Security” will become insolvent in 2033, while Medicare will become unfunded in 2028. So, while I’m doomed now, this is a situation that everyone reading this will likely face within the next 10 years as Republicans are dead set against saving these “entitlement” programs.)
The assistance programs provided by the state are not enough. While they claim to “assist,” their program limitations on income and assets (and small amount of benefits) add up to the violence of state-enforced poverty (far below the federal thresholds and guidelines for poverty) which generally cannot be escaped from.
I am not alone in experiencing any of this. There are many of us trapped by state-enforced poverty, unable to access the care we need. What’s provided by the state is nowhere near enough to survive on, let alone allow for one’s health to improve.
I try to guide people through the thick of all of this when and where I can but as I am myself disabled, I have limited capacity. Ironically, I generally know more about the programs and resources that are available to me than do my social workers, supports planners, benefits counselors, benefits navigators, and patient advocates. I want to stress that this, too, is a problem.
Those employed to assist disabled people are underpaid, undertrained, and their employing agencies are understaffed, all of which leads to a high turnover of overworked people who are supposed to be there to help us disabled people out. That we, the people who need help, need to educate the people who are supposed to help us, is wrong.
I also need to stress that all of what I’ve written here is solely about numbers. It doesn’t go into the human aspect. It doesn’t get into anything systemic. It doesn’t consider ableism, racism, sexism, homophobia, transphobia, institutionalization, sanism, abuse, lack of access and support in rural areas, trauma, and intergenerational trauma, sizeism, and many more issues that act as barriers between disabled people, quality of life, and care. It doesn’t get to the political and economic sources of the problem.
In conclusion, what I have shared is just the tip of the evidence iceberg that this entire system is working as designed: in other words, the difficulty of accessing care is a feature of the system — the point of the system — and not a bug, not a malfunctioning of the system. Capitalism, the state, and most people in general, don’t care about disabled people; if they did, the system would be designed to fully support us.
Postscript: For disabled people in the United States who want help figuring all this out for themselves, there are two resources to which I like to refer people. If you don’t know about them already, you might want to check out the self-advocacy website How to Get On and the Queer Guide to Disability Benefits zine.
Caz Killjoy (they/them) is a cripsex agitator, disability activist, educator, patient advocate, and writer, and who focuses on patient advocacy; sex and kink; pain, disability, and illness; and accessibility and inclusion.