The Department of Justice (DOJ) has released a memorandum arguing that states are not required to provide in-home or community-based care to people with disabilities, including those with muscular dystrophy (MD).
The move drew sharp condemnation from the Muscular Dystrophy Association (MDA), which stated in a press release that it “will work tirelessly to protect the right of people with neuromuscular diseases to live, learn, work and thrive in the community.”
MDA says memo undermines integration mandate
Released by the DOJ’s Office of Legal Counsel, the memorandum undermines the integration mandate, according to the MDA. The association described the mandate as a core doctrine in disability rights that says people with disabilities have the right to receive services and care in the most integrated setting appropriate to their needs — including in their homes and communities rather than in institutional facilities.
The mandate has enabled people living with neuromuscular diseases such as MD to remain in their communities, where MDA states they “overwhelmingly prefer to be,” instead of in “isolating, high-cost institutional settings.”
The integration mandate stems from two key federal laws: Section 504 of the Rehabilitation Act and Title II of the Americans with Disabilities Act (ADA).
The doctrine is grounded in the landmark U.S. Supreme Court ruling Olmstead v. L.C., which found that unnecessary institutionalization of people with disabilities can constitute discrimination under federal law. MDA noted that this right “is well-established through decades of law and Supreme Court precedent and is unchanged by this memo.”
MDA urged the Office of Legal Counsel to retract its advice. The association also noted that it is a nonpartisan 501(c)(3) organization that works with public officials across party lines and does not endorse candidates or engage in political campaigns.
Muscular dystrophy care often extends beyond the clinic
MD refers to a group of more than 30 distinct muscular disorders, each with its own underlying genetic causes, symptoms, progression, and treatments. Its hallmark is progressive muscle weakness and degeneration, which can affect mobility, breathing, and swallowing.
Patients may require a care team that includes neurologists, respiratory therapists, physiotherapists, and personal support workers. MD management focuses on maintaining function and quality of life through medications, physical therapy, occupational therapy, and speech therapy, as well as mobility devices such as walkers or wheelchairs.
Home and community-based care can help people maintain daily routines, stay connected to family and friends, and retain independence and personal dignity while receiving support outside institutional settings, which can be isolating and costly.
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