Those of us with muscular dystrophy would most like a cure, but in the meantime we'd also like governmental policies that support the highest quality of life possible. Instead, those of us with severe disabilities are frustrated by long-term care policies that favor institutionalization and deny us our full rights as citizens.
What's needed is a national policy that eliminates inequities, promotes home- and community-based care, and makes it possible for people with severe disabilities to continue to be productive members of society. This is nothing less than a matter of civil rights.
The lack of such a policy affects many people with neuromuscular diseases including me in frustrating ways that waste taxpayers' money and squander our potential economic productivity.
Home- and community-based services (HCBS) provide long-term care to people where they live, rather than forcing them into hospitals, nursing homes or other institutions to receive care. HCB services include such things as home health aides, personal care services and respite care.
Government-funded HCBS enable people with severe disabilities to remain at home without burning out their family caregivers or forcing the family into poverty.
It would be wise to federally mandate community-based long-term health insurance to provide HCBS to people who don't yet need hospice care, who are capable of directing their own care, but who require full-time care due to catastrophic health conditions. This not only would increase their quality of life, but would save the government money.
Medicaid is the government program that provides long-term health care services to people with severe disabilities (among others). Jointly funded by the federal government and individual states, Medicaid services and policies vary drastically from state to state.
For instance, in Massachusetts, Scott Bennett, 40, who has Duchenne muscular dystrophy, lives at home and receives Medicaid funds that pay for his medical needs and personal care assistants (PCAs). Massachusetts allows Bennett to receive Medicaid even though he works, because he previously qualified for Supplemental Security Income (SSI) and because he wouldn't be able to work if he didn't have medical coverage.
By contrast, Melissa Caffey, 29, who has limb-girdle muscular dystrophy (LGMD), has no such option in her state of Missouri. It's not that Caffey can't work. With the help of Vocational Rehabilitation and student loans, Caffey earned a bachelor's degree and is working on her master's degree in social work.
But even if she had a job, Caffey couldn't afford to pay for the level of medical coverage she requires. That's where Medicaid comes in or in her case, doesn't. As part of an overall slashing of Medicaid funding, the Missouri Legislature recently cut back funds allowing individuals with disabilities to work and keep their Medicaid coverage. Caffey's long-term care options vanish if she seeks to maximize her education.
Marriage also presents Medicaid problems, due to strict income limitations that allow only the poorest Americans to qualify. Having a working spouse can disqualify a person with a disability from receiving Medicaid benefits — a situation that ironically can force families into poverty in order to obtain needed care.
I have LGMD and before my body reached its current ventilator-dependent state, I worked full-time as a university professor. I could afford to pay a part-time salary for my PCAs without any government support.
But once I began using a ventilator, the costs of my health care dramatically increased. Now I need hourly nursing care, not just a PCA. Because I've had to cut back to part-time hours, I no longer can afford to pay for nursing care.
And because I'm married, funding home-based care is proving difficult.
My husband, Jeff, also a university professor, is my primary caregiver. His job provides us with health insurance, but the maximum benefit doesn't cover the cost of my nursing care while he works.
And our middle-class income disqualifies us from Medicaid coverage.
We've managed my first three years on the vent thanks to the relentlessly committed labor of my husband, volunteer efforts from friends and family, occasional monetary gifts and a depletion of our savings. If his job were any less flexible, even these resources wouldn't have been sufficient.
I worry about what the future holds. We have few options. Jeff could quit his job and care for me full time, which would force us into greater economic dependence on the state. We could divorce and I could enter an out-of-town nursing home (because no local facility accepts vent users).
In such a case, my productivity, quality of life and health certainly would diminish. Ironically, my institutionalization would cost the government/taxpayers more than triple the cost of home health care: $10,000 rather than $3,000 per month.
An HCBS Medicaid waiver program that would cover my care exists here in Louisiana, but lack of funding means an eight- to 10-year wait. Sadly, I used a vent for two years before I found out about the waiver.
Even more sadly, such long waits could be easily prevented. Louisiana Legislative Auditor reports in 2004 and 2005 documented that if the state switched from primarily institutional to primarily community-based care, it could save nearly $100 million annually. But such a change is opposed by the powerful Louisiana nursing home industry, which the state reimburses with Medicaid funds for beds in their facilities regardless of whether patients occupy them.
Clearly, current Medicaid policies favor institutionalization over home and community-based services. According to Thompson Medstat, a health care information company, 64.5 percent of Medicaid dollars were spent on institutional services in 2004 and only 35.5 percent for HCBS.
Why should people be forced out of their homes and into institutions for the crime of being disabled? They absolutely should not. Federal policy should mandate more HCB options through Medicaid. Rather than favoring one setting over another, policy should allow individuals in every state to choose where services will be delivered.
After many years of failure, it's time for Congress to pass the Medicaid Community-Based Attendant Services and Support Act (MiCASSA, or H.R.910 and S.401) and the Money Follows the Person Act (H.R.3063 and S.528). These acts put Medicaid funds under the control of the people they were meant to benefit, not faceless institutions.
When health care funds follow the wishes of the individual, states can both save money and improve quality of life for people with severe disabilities. Home- and community-based care strengthens families by allowing them to stay together, and helps younger people with disabilities remain productive, tax-paying citizens.
In fact, states should be mandated to offer Medicaid long-term care coverage for the severely disabled to all families, regardless of income, because almost no family can afford the extraordinarily high costs of long-term care, and most will have to turn to the Medicaid system anyway.
What can you do about this? Research options in your state. Contact reporters to tell your personal story or suggest other coverage.
Create a Web site with helpful information. Join list-servs like ADAPT. Contact your state and federal representatives. Ask friends to join you in letter-writing and faxing campaigns.
The fact that we have one of the best governmental systems in the world can't deter us from efforts to improve upon it and swiftly.
Deshae Lott, 34, holds a Ph.D. in English and works part-time as an online college instructor, teaching literature and writing. To learn more about Lott or to contact her, visit www.deshae.net.