We highlight the struggle of a 44-year-old wife and mother, a Licensed Clinical Social Worker with a PhD in Neurocognitive science who had thrived professionally despite battling muscular dystrophy. Today, she relies on a motorized wheelchair and requires full-time assistance with daily activities, a role dutifully performed by her husband, consequently leaving him unable to work. Her Disability Insurance means her monthly income is too high to qualify for Medicaid in South Carolina. This unfortunate predicament is not unique to her. Thousands of Americans with muscular dystrophy find themselves locked in the same hardship, having contributed to taxes for years, yet unable to access vital care support they desperately need because of their income level.

In the U.S., over 50,000 people suffer from Muscular Dystrophy, a life-altering condition that results in severe physical limitations (MDA, 2020). Once reaching adulthood, many are denied much-needed personal care assistance by state programs simply because they exceed the income bracket - an agonizing catch-22. It's time we rectify this unjust situation.

Our appeal is clear. We, the undersigned, call upon the U.S. Federal Government to recognize muscular dystrophy as a condition requiring full Medicaid coverage for personal care assistance (PCA) services in all states, regardless of an individual’s monthly income. We must extend personal care assistance services to all adults with a diagnosis of muscular dystrophy, regardless of their income. Each individual, whose life has been irrevocably altered by this disease, deserves access to the care they need. This is a compassionate action that respects the dignity of these fellow citizens and acknowledges their contribution to society despite their disability. 

Please, join us in this fight by signing this petition. It's time we stood up for the rights and genuine needs of adults living with muscular dystrophy. We need your support to bring this much-needed change to fruition. Many individuals with this condition face financial barriers, as Medicaid eligibility is often tied to income limits, leaving them without necessary care, putting them in a position to either spend their entire monthly income on hiring caregivers, be subjected to nursing home placement, or have a family member quit their job to be a caregiver and try to survive on 1 income plus the added cost of basic healthcare coverage. This lack of support exacerbates the struggle of people with muscular dystrophy and limits their ability to live independently with dignity.

We urge Congress to pass legislation ensuring that all individuals with muscular dystrophy receive the comprehensive care they need to live dignified lives. Equal access to care should not be determined by income but by need!