Story by Lauren Frias.
COLUMBIA — Family lawyer Max Lewis is living with a severe spinal cord injury caused by a diving accident in 1986. He is paralyzed from the neck down with only limited use of his left arm.
As a quadriplegic, Lewis is one of many who rely on personal attendants to help him for six hours a day, every day. Attendant services are provided to him through Medicaid benefits, so Lewis doesn’t need to pay for them out of his own pocket.
“Without attendant care, I will die,” Lewis said. “Without attendant care, I don’t eat, I don’t drink, I don’t get out of bed, I don’t dress, I don’t bathe, I don’t go to the bathroom. About the only things I can do on my own is work on the computer and answer the phone. And even to do that, I have to have somebody help me get out of bed and put me in a wheelchair and put my keyboard on my lap board. Every basic function of life that I have a need for I have to have help doing it.”
At about $9.15 an hour for attendant service, Lewis estimated the average yearly cost of this necessary help to be $20,000. The cost of doctor appointments and medication are added alongside attendant expenses. And Lewis’ wheelchair to provide him mobility is valued at $25,000.
Paying his medical expenses is no small task, Lewis said. That is why he decided to work as a lawyer, making $826 a month, to qualify for Medicaid and health insurance that covers the cost of his attendants and health care. In Missouri, Lewis said, to qualify for Medicaid, an individual must remain under 85 percent of the federal poverty level, which is $895 a month.
Advocates for the rights of the disabled said that Medicaid eligibility requirements continue to stifle individuals with disabilities from striving for economic independence, forcing them to settle for impoverished lifestyles to receive health care benefits.
Medicaid spokeswoman Marilyn Jackson responded in an email that questions about how the program may be keeping some recipients impoverished were “not simple to answer.” She did not respond to specific questions emailed to her Thursday.
Besides dealing with the federal regulations about his health, Lewis said he finds himself with a more personal challenge with living under the federal poverty level. He said he cannot marry his fiancée, Wanda Jesse, without losing all his Medicaid benefits. He has been engaged since January 2012.
If the couple were to marry, Lewis said he would have to make a tough choice. On one hand, his fiancée would have to quit her job at the Harry S Truman Veterans’ Hospital, which would force her into poverty in order for him to keep his health care benefits. Or Lewis would have to find full-time employment and lose his Medicaid coverage.
“We love each other,” Lewis said. “We would love to get married. They just came out with the law … that, whether it be same-sex marriage or not, you have that right to get married. But that right between her and I is forgone unless I chose to live without insurance or attendant care or force her into poverty.”
Familiar with Lewis’ story, Tec Chapman, executive director of Services for Independent Living, said Lewis is a prime example of the faults in the impoverished health care guidelines, saying that his situation “illustrates the flawed public policy involved with Medicaid.”
Chuck Graham, associate director of the Great Plains Americans with Disabilities Act Center, said because most insurance companies don’t cover attendant care, many individuals with disabilities rely on the benefits of Medicaid to receive needed care at an affordable cost.
Chapman said an individual living in Missouri with a disability is 2.5 times more likely to be living under 100 percent of the federal poverty level than a person without a disability.
“(Medicaid) policies continue to impoverish people (with disabilities), preventing them from becoming economically independent,” Chapman said, adding that the program’s policy “marginalize individuals” and keeps those with disabilities to live in poverty.
The Bureau of Labor Statistics conducted a study in March known as the Current Population Survey, which showed that people with disabilities ages 16 and up face an unemployment rate of 11.7 percent, and people without disabilities face 5.3 percent.
The same study also defined a contrast between both groups’ participation in the labor force — individuals with disabilities are only 19.8 percent of the workforce, compared to people without disabilities making up 68.3 percent.
Several activists have tried to change federal public health policies to correct this dependence on poverty among individuals with disabilities. However, Graham said, they have not spurred any legislative action in the matter.
“I think it’s because most of the people who design the policy have never been on Medicaid,” Graham said. “They don’t have disabilities, so they don’t understand what it takes to be able to go to work.”
Though no steps have been taken to resolve the situation, Graham said he recognizes a simple solution. With the consent of legislative officials, he said Medicaid policies could be restructured to prevent people with disabilities from resorting to a life in poverty.
“The state has the ability to do Medicaid expansion, which can go up to (include) 130 percent of the federal poverty level, allowing somebody to make almost double than what they do now and continue to receive attendant care services,” Graham stated. “The legislature can do something with one vote and no additional money by saying yes to Medicaid expansion.”