The names and work settings of the people who shared their stories have been changed to ensure their anonymity. The predicaments they face are real and the circumstances described in the article are factual.
A sign on the window of a local bank declares that "PEOPLE are worth more than money". I wonder if the teller behind the glass would agree with that statement? Kim is a person with a disability who is being penalized by the State of New York for getting a job! I doubt very much that she feels more valuable to our elected officials than those little green slips of paper she is counting right now. Unfortunately, NY's policies concerning Medicaid and workers with disabilities make it almost impossible for Kim and many others to take jobs at competitive salaries, which would enable them to be self-supporting. But, you don't have to take my word for it. After hearing Kim's story, I started seeking stories from other working people with disabilities. In less than a week, I had three others from Broome, Chenango, and Tioga Counties.
Kim's Story:
Until she lost most of her sight due to diabetes, Kim was a single mom working to support herself and her son. When her health forced her to quit her job, Kim applied for benefits at the Social Security office. Her prior work history and classification as legally blind qualified Kim for Social Security Disability (SSD) and Medicare. She began receiving $630 a month in SSD and $300 a month in Dependent Aid to help with the expense of raising her son. Because her $930 monthly income fell below the poverty line for a family of two, Kim was also eligible for Medicaid. Medicaid was essential for Kim because Medicare does not cover the cost of insulin and other prescription medications that Kim must take daily to control her diabetes.
Now, if you didn't mind living on government assistance and staying under the poverty level--and your child didn't mind missing out on trips to amusement parks, occasional nights at the movies, or other activities with friends because Mom is always broke--you might have been content to stay home and do nothing. Kim wasn't. She wanted to go back to work, to support herself and her son again, and to have a little money for herself once in awhile. So, she went to school. Shortly after she finished, her son moved out and she lost the $300/month in dependent aid. Just after that, she landed the teller job at the bank and began earning $225 a week gross income. And, shortly after that, she received a notice from the Department of Social Services stating that she must pay more than $400 a month to keep her Medicaid coverage.
This is called a "spend down". It is designed to prevent Medicaid recipients from rising above the poverty line, thereby maintaining their eligibility for the program. In other words, any money that Kim makes to get herself out of poverty New York will take away from her in exchange for continuing Medicaid coverage. In fact, when you add up Kim's total monthly expenses, including the $400+ spend down, she is actually further in the hole than she was before she started working!
So, what's the big deal? Kim has a job. Why doesn't she just drop Medicaid and get medical insurance through the bank? Easier said than done. First, Kim is a part-time employee who was hired by the bank, but is classified as a temporary worker. The bank contracts with a local temp agency to handle payroll and benefits for tellers. Therefore, Kim would have to buy into the temp agency's insurance plan. This would cost her about $55 a week. Yes, this is certainly cheaper than a $400+ monthly spend down. There is, however, a catch. Because Kim is diabetic, she is not eligible for coverage until she has paid premiums to this insurance company for one year! She would, essentially, be paying for a service she could not use! Insurance companies often deny coverage to people who have "pre-existing" conditions. As a result, they exclude almost anyone with a disability. By law, they can only deny service for one year. So, perhaps Kim could just skip her insulin injections and other meds for a year? Imagine paying a grocery store $50 a week and going home with empty bags! Of course, if you haven't starved to death at the end of the year, you can buy all the food you want!
Wait a minute! There must be programs or loopholes that let people with disabilities work and keep getting Medicaid until they can get medical insurance, right? Sure. Unfortunately, Kim doesn't qualify for any of them because she receives SSD instead of SSI (Supplemental Security Income). We will explore the pitfalls of work incentive programs for SSI recipients in a moment.
Kim took her problem to the Social Security office, hoping that someone there could find a way for her to qualify for Medicaid without a spend down that made it impossible for her to pay her bills. The only option they could offer was that she must declare enough "blind work expenses" (Social Security rules make it somewhat easier for people who are blind to exclude income from eligibility determination than for people with other disabilities) to drop her monthly earnings from $900 to $79 a month. While she could count her lunch expenses, taxes and any specialized equipment, such as orthopedic shoes, Kim could not come up with enough work-related expenses to drop her income that dramatically.
So, what is Kim to do? Her options are: 1) Pay the $400+ every month to keep her Medicaid coverage and default on her student loans; 2) Drop her Medicaid and pay for her prescriptions out of pocket (a cost of approximately $550 a month) and default on her student loans or; 3) Quit her job and try to pay off the money she borrowed to get an education she cannot use. When asked about these options, Kim shook her head and said that she would be better off staying home and watching TV while the government picks up the tab for her food, housing, and medical expenses.
Lisa's Story:
Before developing multiple sclerosis (MS), Lisa attended college and worked part-time to help support her family. Lisa was able to finish her associates degree, but, as the effects of MS became more severe, she was unable to continue doing the physically demanding job that had helped pay the bills.
Because her earnings had been relatively low during her work history, Lisa was eligible for only $340 a month SSD, minus $50 a month in Medicare premiums. When added to her husband's earnings, the total yearly gross income for Lisa's family of three was less than $21,000. While this placed her family under the poverty line, Lisa could not receive Medicaid unless her husband agreed to sign a "Spousal Refusal" statement in which he denied any responsibility for the cost of his wife's medical care. For both Lisa and her husband, this was a hard pill to swallow. Without Medicaid, however, Lisa would not be able to get the medications she needed to slow the progress of MS and maintain her health. She could not use her husband's medical insurance because, like Kim, Lisa was denied coverage due to a pre-existing condition.
Staying home day after day, having no other reason to get up in the morning than to put her daughter on the school bus, Lisa fell into depression. She needed a purpose. She needed to feel useful again. She wanted to be a contributing member of society, not a burden to taxpayers. Lisa made a decision and, this May, began working part-time in human services. When Lisa reported her work activity, the Department of Social Services also made a decision. Lisa was hit with a monthly spend down of $410.
Like Kim's, Lisa's Medicaid spend down is variable. It will rise and fall in proportion to Lisa's wages, keeping her at the poverty line. In fact, Lisa's caseworker informed her that every dollar she earned while working will automatically be added to her spend down. Essentially, Lisa is paying New York State for the privilege of working! Not only that, but she's also using her SSD to buy gas and pay for car insurance and vehicle maintenance so she can get to and from work!
Lisa's life is further complicated (by DSS) because she is married. Again, Lisa is ineligible for the 1619b work incentive program because she is not eligible for SSI. Therefore, she cannot own a home or any other assets totaling more than $3,000 or she will lose her Medicaid coverage. If that happens, she will no longer be eligible to apply, since DSS has begun denying Spousal Refusals that make people with disabilities who are married eligible for Medicaid. For this reason, Lisa turned down medical coverage offered by her employer. Yes, the amount she would have to pay each week to buy into the private insurance plan is less than her spend down. This plan, however, does not pay for personal care attendant (PCA) services. As Lisa's MS progresses, she will probably need a PCA to help with personal care. Therefore, she cannot afford to lose her Medicaid coverage.
Also due to this restriction, Lisa had to sign over to her husband the deed to the house they had bought together. Should anything happen to her husband, Lisa has no claim on the property. To protect his family, Lisa's husband willed the house to his daughter.
So, what can Lisa do? In a discussion with her caseworker, Lisa was presented with two possible solutions to her predicament. First, she would be better off if she were single. So one answer, according to her caseworker, would be to file for a legal separation or divorce her husband. While this would eliminate his income from the books at DSS, it is not an acceptable solution for Lisa or her husband. When this was made clear, Lisa's case worker responded, "Well, I guess there's no financial advantage for you to keep working...Tell your supervisor to write a statement with the date you quit your job." (Lisa wrote down the exact words used by her caseworker and quoted them back to me.)
Janet's Story:
Janet applied for SSI after several months of trying, without success, to find a job. As a person with a disability with no employment history or other means of income, Janet was eligible for SSI benefits. SSI recipients automatically qualify for Medicaid. Medicaid coverage gave Janet access to the PCA services she needs to get up, bathe, dress, and perform other personal tasks.
Shortly after she began receiving SSI and Medicaid, Janet got a job. When Janet began working full-time, the additional income did not affect her Medicaid eligibility. A program called 1619b allows persons who are no longer receiving SSI due to earned income to keep their Medicaid eligibility. There is an income cap on this program. It fluctuates somewhat from year to year. When Janet enrolled in the program two years ago, the cap was $28,000. In 2001 it's $33,000. As with the Aid to the Disabled program (through which Kim and Lisa receive Medicaid), however, 1619b imposes some pretty severe life restrictions on those who use it.
One major limitation is that people receiving Medicaid under 1619b can't have personal assets of more than $2000 if they are single, or $3000 if they are married. Ownership of a vehicle is permitted, but the vehicle must be used for "necessary transportation". In other words, a person enrolled in 1619b must demonstrate the vehicle's necessity for transportation to and from work, medical appointments, etc. It is also worth mentioning that nobody in the 1619b work incentive program owns a Lexis! Now, let's talk about housing. If the person already owns a home, he/she can keep it. Because 1619b restricts the amount of personal assets, including savings, that a person can accrue, however, a person can't save up enough money to make a down payment and cover the closing costs associated with buying a home. Therefore, many people with disabilities are excluded from becoming homeowners as a result of these restrictions. Pardon me, but I have to ask, "What's the point of working if you can't use the money you earn to pursue your dreams?"
According to Janet, the rules for retaining Medicaid coverage under 1619b weren't really an issue-until she got crazy enough to think she was entitled to the same rights and privileges as everyone else. When Janet and her fianc‚ decided to get married, the Social Security Administration (SSA) made life very complicated for the newlyweds. First, Janet was informed that, if she and her new husband were planning to occupy the same residence (as married people often do), they would have to keep their combined earnings under a thousand dollars a month or she would lose her Medicaid eligibility. This meant that Janet and her husband would have to eliminate $1,100 of their monthly income or hand it over to the state by way of a spend down!
Fortunately, Janet's husband is in the military. Because he lives apart from her, SSA didn't deem all of his earnings part of her income. In order to maintain this "separation", however, Janet could not accept any benefits that spouses of active military personnel are entitled to. Neither could she accept any money from her husband for food, clothing, or housing expenses. Money matters can strain any relationship. Can you imagine how difficult all of this financial mumbo-jumbo must have been for this couple?
Now, as if that wasn't bad enough, Janet was also forced to take a cut in pay because her marriage essentially nullified her eligibility for 1619b. Because Janet liked her job and wanted to keep working the amount of hours she had been working, she asked her supervisor to reduce her pay to keep her under the income limit. Janet was very good at her job. Not only did her boss want to keep her, but two other organizations offered her positions as well. She turned them down, but not because she is a slacker who wants nothing more than to stay home and live off government programs. She had no choice but to decline an increase in her earnings if she was to keep the Medicaid that provides her home care and PCA services. Again, private insurance, such as that offered by her employer, does not pay for these essential services. Without them, Janet would not be able to work!
Now, if that isn't ironic enough for you, try this: Janet's husband will be discharged from the military in March, 2002. What will Janet do then? Well, she can quit her job and hope that Medicaid will let her husband sign a Spousal Refusal so she can continue getting the services she needs.
Gladys's Story:
When Gladys was diagnosed with MS, she applied for and received SSD, Medicare, and Medicaid. At the time, Gladys was still able to walk with forearm crutches and did not require a PCA. When she re-entered the work force, she was able to work full time and get medical insurance through her employer that covered her medications and doctor visits. She did not need Medicaid.
As her physical condition changes, however, Gladys's needs change too. She is able to drive to and from work, but she no longer has the stamina to work full time. She uses a power wheelchair and requires assistance to get ready for work in the morning, and when she comes home at the end of the day. While Gladys is paying a premium to keep the medical coverage offered by her employer, it is useless for personal care. Private insurance companies do not pay for PCA services!
Like Kim, Lisa, and Janet, Gladys also faces a decision. If she continues working, she must pay for a PCA out of her own pocket, which she is currently doing. If she can't work enough hours to allow her to do that, she'll be forced to quit her job and stay home. In that case, she will qualify for Medicaid and, therefore, be eligible for PCA services at no cost. New York will pay for a PCA to help Gladys get up and dressed when she has no place to go, but won't do that if she has a job!
