There is nothing more ‘American’ than locking minority groups into systems of poverty, expecting them to be grateful to the government for handing out scraps, and then subsequently blaming them for being ‘leeches’ on a system designed to ensure they remain trapped within it. Disabled people are all too familiar with this form of systemic oppression, and are a group that is essentially treated and classified as second class citizens in this country.
There is a long painful history bubbling beneath this that I won’t even begin to unpack in a single blog post, but what I find myself consistently coming back to as I transition into ‘real’ adulthood (whatever that even means) is the financial control that the government has over people with disabilities that most outside of our community are blissfully unaware of. OR, even more horrifying, are cognizant of but just don’t consider it an issue.
Ultimately, as long as we need services related to our disability, the U.S. government is legally allowed to control our finances. I have laid out below the clear and direct abuse of power that the U.S. government holds over our lives.
A quick breakdown of the services we need to live:
Many adult people with disabilities (PWD, for short) need assistance with tasks of daily living like showering, using the bathroom, getting dressed, feeding, etc., and thus, home health aides (HHA) or Personal Care Assistants (PCA) are the workers that assist us with these tasks. Also needed by many: home nurses to assist with more medically-focused tasks like working with traches, wound care, etc. Typically, the only insurance that covers these services LONG-TERM (i.e. the duration of our lives, because we will always be disabled) is Medicaid.
We also may need access to physical therapy or occupational therapy to keep up with our health. Typically (and this is being generous), the only insurance that MAY cover this long-term is Medicaid. Private insurance (i.e. able bodied people insurance) only covers PT for short periods of time, because it is designed for ables that have sustained an injury and are trying to get back to their baseline. If you are a PWD that is using PT as maintenance and not working toward healing a injury/post-surgery, you will eventually stop being covered by private insurance companies. So we are left with Medicaid, who, keep in mind, STILL doesn’t cover all PWD for therapy services. Depends on your state/your plan/your luck/the alignment of the stars.
Then there is the matter of medical equipment. My motorized wheelchair that allows me to move independently in the community costs 40K. My partner’s costs 60K. The pricing, manufacturing, and quality of these devices are an entirely separate issue, but keep this price in mind. It needs to be replaced every five to seven years because of its (lack of) durability. Repairs are frequent and expensive. The battery alone on Quantum chairs need to be changed yearly, and costs ~600 dollars out of pocket. SOME private insurance will pay for repairs, and PART of the total cost of the chair. Yet, Medicaid is the most reliable for agreeing to cover the chairs.
Alright, so the only insurance truly available to us is Medicaid. How does that work?
*** This is a breakdown of some of New York’s policies. Every state is different, and many do not have the policies I will discuss***
For us to get Medicaid, we must 1. prove that we are indeed disabled (i.e many, many visits from the state & many, many forms to fill out, & many, many months of waiting), and 2. be a recipient of Social Security Income. SSI is a check from the gov’t every month ranging from roughly 500-800 dollars. Sounds great at first – free additional money, yeah? Nope. Not additional to anything.
If you have any income, you lose SSI. If your bank account EVER at ANY POINT goes above 2,000 dollars, you are flagged and receive a call from the government. You lose SSI. Which is essentially tied to & the precursor for your Medicaid. You are not allowed to have many assets in your name, which includes property, certain amounts cash– you name it. You MUST be living in poverty. It is worth noting that there are some things that are excluded from our resource list, like owning up to one car, a non-business property worth less than 6K (so, nothing in NYC), or certain scholarships used immediately for tuition. Many PWD that turn 18 and go to college enroll in SSI, a time when they’re not working anyway. But what is supposed to happen when we graduate, have student loans, and want to work?
Access to the services we need to survive being tied to ensuring we remain in poverty is inhumane. So the gov’t “tried” to remedy it.
Under 1619(b) of the Social Security Act, some are allowed continued Medicaid-coverage. This means that you can continue services if you have been receiving SSI for at least a month, you’re still disabled, and you need Medicaid to work. BUT the catch here is that you are only allowed to have up to to $46,316 in income.
So the Medicaid Buy-In (MBI) program came along, that was supposed to fix this and be designed for working PWD. Same criteria as above except now you’re allowed to have $64,836 in income for an individual and $87,288 for a couple. Another cute little catch, you’re never allowed to have more than $20,000 for a one–person household and $30,000 for a two-person household at a time in assets.
Then there is Medicaid-Spend Down. This program I know the least about. My understanding of it is that it allows you to deduct certain medical expenses (like doctors bills, medication, home care, or insurance premiums) from your income so that you can qualify for Medicaid. Essentially, if you deduct what you spend on medical bills every month from your monthly income & THAT number meets the cut off for Medicaid eligibility, they will reimburse you. This is done monthly. You will be busy with keeping receipts for all expenses, and having to consistently report your spending to the government. (I read that you must have assets below $15,750 for individuals and $23,100 for couples, but not every resources specifies this.)
And I should make something else clear: not everyone knows about Buy-in or 1619(b) or spend down. Not even the people who work for the government are fully aware, and it is only offered in select states. Social workers and case managers have told me completely varying stories and policies. Unless someone has access to social workers and lawyers that are actually educated specifically on these systems in government (which are sparse), or PWD themselves have the education and knowledge of legal jargon to comb through these policies, many are unaware, and remained trapped in the burgeoning cycle of poverty, paperwork, and waiting.
And as for the people that do have Medicaid-Buy In (MBI) and are allowed to work, you must keep your dreams and aspirations low. You can’t earn anything more than what they allow, and you likely can’t get married because you’ll lose your services if your partner has any money at all. This is the system that keeps PWD from holding positions of power, from well-paying jobs, from higher education. Why would you go for a degree that you would love but leads to a career that pays 70K? If you would need home care while working, you are at risk of losing it.
It’s not just about finances & bank accounts, it’s about quality of life.
New York City is expensive. Living with a disability is expensive. We cannot afford to buy a house and convert it to be fully wheelchair accessible with only 20,000 allowed in assets under MBI. We cannot afford 1,000 dollars out of pocket to pay for a new motor on our chair when we can’t wait the months it would take with insurance. We cannot afford to get married, because our partner’s assets will be held against us. We cannot afford a truly wheelchair accessible apartment in NYC with these income restrictions. Most NYC apartments that are genuinely accessible (big bathrooms that fit our wheelchairs, functioning elevators, kitchens big enough for our chairs to fit in, bedrooms that can fit our medical equipment and still have space for us) cost at least 3,000K a month. That is virtually impossible on that salary.
Maybe some of us are lucky enough to have family in the area. Lucky enough to be forced into living with them forever because we can’t afford a place of our own, either because of money or lack of home health care hours.
Loop holes exist. They are arduous & under-discussed. You need free time, patience, planning, education, and legal assistance.
Sure. There are exceptions. That one guy who applied to that one program and gets half off his rent for a fully accessible apartment in that new luxury building (i.e the only building in his area that’s ADA compliant). The kid whose parents are a doctor & a lawyer and know how to properly get paperwork done, who know what the government is looking for with a fine-toothed comb. That other lady who won a law suit and is set for life in terms of healthcare. Resources are scarce. Millions of people are all fighting for the same exclusive five available spots. This takes education, connections, a support system, and luck.
If you’re on MBI and have over the 65K limit, I’ve heard you can make an Able Account. It is a specific account where you put excess income that won’t affect your Medicaid eligibility. You can contribute up to 15K a year without having to report to the government. There are overall limits of how much you can let accumulate, and even tighter restrictions for those receiving SSI and not on MBI. You are allowed to spend this money on “qualified disability expenses,” which ranges from healthcare, to food, to housing.
Or, a special needs trust. Similar to above except they are pricey and require legal resources, as it is essentially a trust that you keep with a lawyer. Unlike an Able Account that more so functions like pulling money from a bank account, this is much more restrictive because to access it you must contact your lawyer. There are a few different types.
What does this mean realistically for our futures?
It is insurmountable to go through this alone. It is impossible for many to live on 8 hours of care and such strict income limits. Survival, access to services, and quality of life sometimes also depends on the availability of and socioeconomic status of our families. The people with families who can pay the $600 when they need a wheelchair repair are going to have a better quality of life. The person with available parents or siblings to fill in when their allotted 8 hours of home care run out are going to have a better quality of life. But what do we do when our families aren’t available?
It goes without saying that the more physical care you need, the worse off society treats you. If you need help using the bathroom or turning in bed at night and don’t have family to live with, you’re fucked. You will spend the rest of your life begging the gov’t for 24 hour care (because shockingly, you cannot time your bathroom needs to the 8 hours of care they grant you, and shockingly, no one deserves to be laying in bed unable to move for 16 hours, waiting for the next shift). This is a difficult feat. People go to court for this regularly. And get denied regularly. And THIS is how our people end up in institutions.
When we set up a system where PWD have to chose between financial freedom and basic needs, we have failed. When we set up a system where we expect PWD to not work and thus, create policies that prevent them from doing so comfortably, we have failed. When we set up a society where our basic needs are “not worth the funding” and it is instead easier to shove us in nursing homes, we have failed.
And this is exactly why the independent, middle class, disabled person is a rarity. You are either living in poverty struggling to keep SSI & Medicaid, living in public housing & fighting over the ONE wheelchair accessible apartment. OR your family is loaded enough to not need medicaid because they can pay for home health aides & a fully accessible apartment or house. This of course depends on how much care you need – paying for 1hr a day is VERY different than paying for 24. Unless you got money money, you cannot afford that. This dynamic plays into the hierarchy of PWD that even our own community falls victim to internalizing: that the “more abled” you are, the more worth you have and more respect you deserve from the world. This idea does not exist out of nowhere, it is rooted in how we get treated: the “less” disabled you are, the better people treat you, and the easier time you have navigating these services.
You exist in the middle class when you are able to work at least part time, somehow found out about MBI and got accepted into the program. You stay within MBIs income limits & live with family, the house or apartment under someone else’s name. You don’t get married to anyone that makes a livable wage. You don’t set up a college fund for your future kids, and you definitely don’t have much of a savings account. You live at the whim of the gov’t, waiting for their unannounced pop in’s to make sure you’re still not randomly becoming able-bodied, and sit in your lane like the ‘good disabled person’ they want you to be. You beg they don’t cut your hours. You pray that your disability doesn’t progress & you get shipped off to a nursing home when you’re 40 because the state determines you aren’t worthy enough to live in the community with more hours of care. This place to be is tenuous. Terrifying. Given to change at any moment.
This is why we protest. For a life with dignity and humanity.
Unless you as a disabled person grew up with and surrounded yourself with other PWD, you wouldn’t know. Unless you have the time & resources to research all of this, you wouldn’t know. Certainly no one in the public school system taught me how to exist as a disabled adult or prepared me for this at all.
Generally, able-bodied people remain unaware. We get called lazy. We get called leeches of the gov’t. We get called useless. We get pity smiles, and elicit genuine shock if we tell someone that we hold a job. Dare I say a … high power job? As rare as that is for one of us? Oh yes, just wait patiently for the Channel 7 special about you ‘overcoming’ the obstacles set forth by your own damaged, disabled body — they won’t mention the hoops you had to jump through in society to get there. They won’t talk about the system they’ve set up against you. They’ll only discuss how much your “body hinders you,” so they’ll feel justified in not allowing/expecting our group to work in the first place. So they don’t have to make anyone challenge society’s view of the disabled.
Yes, we are angry. Yes, we are tired. No, we are not going to deny our disability and sugar coat our lives because it makes people uncomfortable. No, we are not going to ‘remain positive and quiet.’ We have made progress, but we’re not there. These systems are archaic and relying on tired stereotypes that keep our people oppressed. Access to appropriate healthcare should not only be allowed if the government is able to control our finances. Please spread the word. Please keep our community in mind when you fight for civil rights, livable wages, universal healthcare, and marriage equality. I’ll never understand how we set up a society where PWD are viewed as that disposable, meanwhile anyone at anytime is a step away from joining our community.
Helpful resources for those in NY (feel free to leave comments w/ additional):
SSA Resource exclusions: https://www.ssa.gov/oact/ssir/SSI11/Exclusions.html
Section 1619(b) of SSA: https://www.ssa.gov/disabilityresearch/wi/1619b.htm
Medicaid Buy-in: https://www.health.ny.gov/health_care/medicaid/program/buy_in/
Medicaid Spend-Down: https://www.medicarerights.org/fliers/Medicaid/Medicaid-Spend-Down-(NY).pdf?nrd=1 AND http://www.wnylc.com/health/entry/46/
Able Account: https://www.ablenrc.org/what-is-able/what-are-able-acounts/
Special needs trust: https://specialneedsanswers.com/what-is-a-special-needs-trust-13601 OR https://specialneedsanswers.com/what-is-a-special-needs-trust-13601
Despina Bakos 