From the time we are young, we are told that if we work hard, we can achieve anything in America. That we get what we worked for and the dream is ours. If you grow up disabled in America, the system has huge flaws that make you think otherwise. Although we were long ago declared equal citizens, the current Medicaid policy on which so many people with disabilities rely contradicts the very idea that opportunity belongs to everyone, with or without a disability. Currently, Medicaid is essential to millions of people with disabilities, specifically to qualify for healthcare coverage including personal care assistance that would otherwise present a prohibitive financial burden. Personal care services at their least expensive, cost about $20-$30,000 annually, which for many people represents a significant chunk of an entire annual salary. Thus, many of us need the money from Medicaid to fund the care we need to survive and survive independently.
However, here's the catch. In order to remain eligible for Medicaid which includes the home care services, a person with a disability can have no more than $2000 in his or her name at one time which effectively creates a system that makes disability and poverty inextricable. Essentially, the system as it stands forces people with disabilities who need these programs to choose between support services that they can't live without and the ability to save money that will keep them out of poverty and give them a chance to achieve financial independence. These rules simply do not make sense for the situation. All around us, there are media campaigns encouraging people with disabilities to work. There is national disability employment month. There are cheery posters telling us that it's about what you can do. In schools and vocational rehab programs, even in settings specifically for people with disabilities, the opportunity to get a job and live independently is presented as merely a matter of proper effort, enough striving, and a “belief that you can” (cue rainbows and ponies). But if you live for a day with a severe disability, it becomes clear immediately that success is more complicated for us than putting in a proper effort.
A person with a disability can work hard for his or her entire life, and still if the salary earned is not enough to pay out-of-pocket for personal care expenses and still have something left over to live, that hard-working American, that person who once sat in a classroom as a small child and was told that if you can dream it, you can do it, remains a prisoner to a program that operates as if a wink of money means you will no longer need help paying for expensive care that essentially enables you to function. As much as I want to be a young idealist and believe that America rewards people who work hard, I feel cheated by the complete absurdity of the system. Society says go to work. Get a job. Try hard. Study hard. You'll get what you deserve, and if you don't, it's because you're lazy.
To all those out there with this judgmental attitude, listen to the facts from someone that would know. There are millions of people with disabilities who are working hard, very hard. Maybe harder than some others without disabilities. We are not lazy and we are looking for a way to lift ourselves up. But the opportunity is frequently taken away by a system designed based on antiquated foolish ideas about what it means to be disabled. Understand that it makes zero sense to ask someone to go out and get a job and then as soon as he or she has any income, to take away the supports that make it possible to go to the job. It is disheartening at best and crushing at worst that your fellow citizens do not have the same opportunity to save money, to build their dreams, to secure their future, without giving away the lifeline services that help us remain part of your community and to contribute as we have been called to do. When the issue was explored in the April 23 edition of the Washington Post, Harold Pollack, the author of the article, and sibling of a disabled brother, Vincent, said: “You can generally keep your house or your car. That’s pretty much it. You can’t have that emergency fund on hand in case the muffler or the furnace breaks. And what about the stuff Medicaid doesn't cover? It’s nice to get your teeth cleaned or just to buy a Big Mac every once in awhile. Because of such means-testing, that new mother is forbidden from setting any money aside for her child’s education. That food services worker living with intellectual disabilities can’t save up for a nice vacation” (Pollack 2014).
That doesn't seem congruous with the simplified rhetoric of “you can do it if you try”, does it? Is it justice that a person with a disability can try and try and try and try and try and still be denied the right to save that money, to take that job, to accept that promotion, without fear of losing the eligibility that allows him or her to literally get out of bed in the morning, get dressed, and go to the bathroom? I don't think so. That is not the America I was raised to dream about, but that is the country in which we are living. People like me should not have to depend on a system that makes us fear our own success as much as our failure. Achieving the financial stability we deserve should not make us afraid that we won't be able to fund somebody to take care of us in our own homes anymore. Says Pollack, “If you’re on Medicaid because you had a spinal cord injury, you face punishing limitations on your allowable financial assets. If you qualify for Medicaid on the basis of low-income, you don’t face the same limitations. There’s no real justification for this inconsistency”(2014).
I should not live in a society where I work hard in school and display the potential to get a successful job, and yet lie awake sometimes terrified that if I pursue the goal that will allow me to contribute, and presumably make a salary, that I will be living in a cardboard box (with a ramp of course). Nor should I feel the same terror for my friends who are also bright, creative world-changers in spite of and because of their disabilities. Then as Pollack mentions, comes the added issue of classism. Those with the resources to hire a skilled financial planner may find a way to avoid financial catastrophe while keeping their supports. I am fortunate to have a family and friends that I know will look out for me until my last day and help me come up with creative solutions.
But for those who are not so lucky, the system perpetuates an almost inevitable unstable future. For example, in the Washington Post article, a woman with fewer resources was forced to leave all of her money to her nondisabled son with the understanding that half of it belonged to her disabled daughter. However in these situations, there is no guarantee that the money will be used appropriately or that it will not be stolen from the person to whom it truly belongs (2014). If I do not speak up for the people not as fortunate as me and merely secure the future for myself, I have accomplished nothing.
It's time to break the cycle. It's time to free my people. It is time to show them that the American dream stands on two feet, but also on wheels, crutches and canes. It's time to create policies that do not punish people have to ask for help, and to create policies that honor the idea of interdependency instead of institutionalizing a sense of dependency guilt and dependency shame for those who cannot live in an environment of “rugged individualism”. The fact is that nobody can live without help, with or without a disability, but unfortunately the type of help people with disabilities need is stigmatized, even though if we live long enough, we will all need this kind of help someday. An opportunity for change is happening. But it requires the concern of every citizen who cares about the future, not just those with a direct connection to a person with a disability. Anyone who's ever loved anyone or believed in justice should care about this issue. To those who don't think it affects them, remember that you one day could acquire a disability in the blink of an eye, or that one day your beloved child, who right now may just be an idea, could have a disability. It is called the ABLE Act. ABLE stands for Achieving A Better Life Experience, and this bill, if it gathers enough support in this session of Congress, has the potential to solve many of these problems. According to the National Down Syndrome Society,
“The ABLE Act would amend Section 529 of the Internal Revenue Service Code of 1986 to create tax-free savings accounts for individuals with disabilities. The bill aims to ease financial strains faced by individuals with disabilities by making tax-free savings accounts available to cover qualified expenses such as education, housing, and transportation. The bill would supplement, but not supplant, benefits provided through private insurances, the Medicaid program, the supplemental security income program, the beneficiary’s employment, and other sources. An ABLE account could fund a variety of essential expenses for individuals, including medical and dental care, education, community based supports, employment training, assistive technology, housing, and transportation. The ABLE Act provides individuals with disabilities the same types of flexible savings tools that all other Americans have through college savings accounts, health savings accounts, and individual retirement accounts. The legislation also contains Medicaid fraud protection against abuse and a Medicaid pay-back provision when the beneficiary passes away. It will eliminate barriers to work and saving by preventing dollars saved through ABLE accounts from counting against an individual’s eligibility for any federal benefits program” (2014).
At a time when the government is polarized that almost every issue, we have an amazing chance to work together. This is a bipartisan, bicameral (both House and Senate) effort. The bill is currently in committee, but needs more attention and more support to warrant a floor vote during this session. Many senators and representatives are yet to sign on. We need to remind these people that disability does not pick a political affiliation, and we all deserve the chance to use our talents.
I am a person with a disability. I am a student who works hard every day, and plans to graduate with honors. I am a person with big ideas, anxious to change the world. I would love to someday own an apartment, or even a house, to take a vacation, and to raise children of my own. I shouldn't have all of that in jeopardy if I want to keep the supports that I rely on every day. In addition to all of these things, I am an American, and I want to believe again, with the same youthful hope we instill in our kindergartners when we teach them about the Fourth of July, that everything waiting for a hard-working person without a disability is also waiting for me. Dear Mr. President, dear Congressperson, dear friend, dear neighbor, dear fellow human being… Make me believe again. I know we can do it together.
National Down Syndrome Society. The able act. Retrieved from http://www.ndss.org/Advocacy/Legislative-Agenda/Creating-an-Economic-Future-for-Individuals-with-Down-Syndrome/Achieving-a-Better-of-Life-Experience-ABLE-Act/
Pollack, H. (2014). How Medicaid forces the disabled to be poor… but some bipartisan help is on the way. The Washington Post. Retrieved from http://www.washingtonpost.com/blogs/wonkblog/wp/2014/04/22/how-medicaid-forces-the-disabled-to-be-poor/
Image description: 2013 National Disability Employment Month poster. Features people with various disabilities in circular bubbles In purple at the top: Because we are all equal to the task. In white below the photo: National Disability Employment Awareness Month. In purple: What can YOU do? Poster background is blue and green.
Wow, I had NO idea that they were working on a bill like this. I acquired a disability 3 years ago due to an accident, and when I got approved for social security, and sent my backpayment, I wanted to put it aside for a down payment on a house, or to move to a more accessible place that was going to take awhile to locate. I was told by social security that I had something like a month to spend the money, because I wasn't allowed to have more than $2000 in my bank account, or my social security would be taken away. I was really heartbroken, because living on disability and having kids to care for, how the heck would I ever have a chance to have that kind of money ever again? Now I struggle to get by every month (my foodstamps were cut down to almost nothing because I "made too much money" on social security), and the last two weeks of every month is spent trying to be creative about cooking, and obtaining as many food boxes as possible. I DESPERATELY need dental work, due to problems I had when recovering from my first surgery, I've broken a bunch of teeth. Even with insurance I got through medicare that helps pay dental (80% of $1250 a year), I have NO way to come up with the other 20%, that has to be paid day of the appointment, even though I don't have a CLUE how much it is going to cost going in (and they refused to give me any price range, either). It's very discouraging. And then, with places like Goodwill claiming they help find disabled people jobs, and now it's come out that they pay people sometimes LESS than $2.00 an hour, that's also discouraging. Oops, sorry, I wrote you a book.ReplyDelete
It took me a while to figure out how to reply on here! Thanks for writing! I am so sorry to hear all the been through but stories like yours motivate me to keep going and keep fighting until we make a change. If you haven't already, please please join me in contacting your Congress people and educating other people about this issue. I'm trying to build a network of people who can work together with me. If you'd like to keep in contact, use the contact form by the side of my page and we can exchange emails. In solidarity, Kathleen at the squeaky wheelchair
Kathleen, I am the caregiver of multiple disabled family members. Thank you for your post! It is frustrating and frightening to me as I watch everything the older members of my horde have to go through, and realize that the children will also be affected and held back by these same ridiculous rules and restrictions. Having an ABLE account would take the largest issues away and allow the children the possibility of someday being in command of their own lives as adults. I will be looking into this and giving it whatever meager support I can!ReplyDelete
Thank you!!! I appreciate you taking the time to read & spread the word.Delete
Kathleen this is extremely interesting. I think you may have left out the issue of if someone gives you a gift. If you get a gift you technically have to report it and they will take the price of the gift out of your account. If you get a monetary gift say a check in your name then you have to report the gift and they take it out of you're $2000 a month. If you get money from your parents because you need to buy books and you don't have enough money in your account if your parents help you out you are supposed to pay the government the amount your parents gave you. Its all very confusing to me but it happened to me. Also if you are in the hospital the government stops paying you the 700 or 500 and something dollars that you would normally receive. They don't think about the cost of living at all. If you are in a hospital and are lucky enough to live in an apartment, say good bye to it because you won't be able to pay the necessities because you have no money coming in. I don't know all he technical terms I just know what the SSI office told me after they dropped me when I have the use of one arm and have to lay on my back to drive. Now I am even worse and instead of reinstating me they went back to where they screwed up and are slowly giving money back from then and giving my regular checks too. The most annoying part is I was not told I was back on disability. I went to call them and my dad hapend to look at my bank account and noticed I was in fact getting paid again.ReplyDelete