Surrounded by hundreds of other parents raising children with disabilities, Tamerah Cooper was no longer alone.
People rallied at the Arkansas capitol to describe the hardships of waiting years for disability services loved ones needed to stay at home rather than live in an institution. Three posters leaned on the lectern in front of the speakers, including one of a child who died while waiting for the government to fund that care.
Cooper stared at the photo of a smiling 7-year-old girl. Her son, Maceo, who has a degenerative neurological condition, is the same age.
“I don’t want to lose my son,” she said.
Cooper joined the Little Rock rally Sept. 16 to demand state officials fully fund programs that allow people with disabilities to live at home
as required by federal law. The Americans with Disabilities Act and a 1999 U.S. Supreme Court decision affirmed disabled people have a right to care that lets them stay in their community rather than being forced to live in medical facilities.
And yet, more than 2,400 people in Arkansas – and 650,000 nationwide – appear on waitlists for those Medicaid services. USA TODAY chronicled the story of a Georgia man who was trapped in a nursing home for 10 years until his number was called.
In response to the growing protests, Arkansas Gov. Sarah Huckabee Sanders announced on Sept. 15 she would work with legislators to clear the state’s waitlist. Until a funding solution can be found, the Republican said she would use different Medicaid dollars to provide waiting families with the most-requested type of home care, starting in January.
It’s not soon enough for Cooper.
“People are dying,” she said. “This isn’t political. This is a human issue.”
Meanwhile, the federal government is retreating from its responsibilities to limit how often people with disabilities are forced into institutions. On Sept. 30, a judge approved a settlement between U.S. health officials and five states that guts federal enforcement of rules that ensure disabled people can live independently, in their homes, whenever possible.
“I’m so worried about my kids’ future,” Cooper said, afraid her son’s wait could become even longer amid the Trump administration’s shifting disability policies.
After a long history of bipartisan collaboration, experts say disability rights now face their biggest threats in decades.
“We still have our rights. It’s just going to be harder to enforce them,” said Maria Town, the president of the American Association of People with Disabilities.
Without allies in the White House, advocates say local leaders could face increased pressure to boost funding, change regulations and enshrine civil rights into state law.
Cooper finds hope among peers fighting for an accessible American Dream.
Alone
So much of Cooper’s life has not gone to plan.
She left an abusive relationship and moved into a shelter with her two boys, including Maceo, who has a rare genetic condition and uses a wheelchair. She dropped out of college to work more hours so she could afford a place for her family to live. She moved back home to Arkansas but says even her relatives struggled to understand the persistent demands of caring for a disabled child.
After Maceo had surgery in January, she had to stop working altogether to take him to countless appointments and to deal with sudden medical emergencies. Maceo needs hours of daily nursing care that his mother provides, despite not being a trained professional.
One day, as Cooper loaded her boys into the car, Maceo soiled his pants. She called the school to say they’d be late. Desperate, she again asked if they knew of resources that could help her family.
“I don’t know what to do. I have nothing,” she said. “I’m overwhelmed caring for Maceo.”
Her words appeared in a school official’s report to state child welfare services, asking them to investigate Cooper for possible neglect. Angry and defiant at first, Cooper started to doubt her parenting: Could she really care for Maceo, poor and on her own?
“If you’re better than me at it, then go ahead,” she remembered thinking. “Please. He deserves better.”
The caseworker who visited Cooper’s home reassured her that she was doing the best she could with what she had. The case was closed. No one told the exhausted mother where else she could turn for help.
“We shouldn’t be forced to think the foster care system or a complete stranger can care for our children better than we can,” Cooper wrote in a September Facebook post reflecting on the incident.
Months later, Cooper still struggles to sleep as she worries how to provide everything her boys need. She wonders how much longer she can lift Maceo, who weighs 100 pounds, over her shoulder to carry him from the house to the car. From the car to his wheelchair. From the wheelchair to the bath. Cooper’s four older brothers ask her how she does it.
“I have love,” she told them. “And I hope God is around here somewhere.”
Qualified, but waiting
Eventually, Cooper learned about a Medicaid program that helps disabled people with daily tasks like bathing, using the bathroom and transportation so they can remain at home. It also could help pay for a medical lift to safely move Maceo in and out of his wheelchair. The care would follow him into adulthood, so he could live and work on his own.
Cooper applied, imagining how these “supportive living services” could change her family's future. She’d be able to sleep, avoid back injuries and return to work, earning money to stabilize their future. She wouldn’t need to send her son to a nursing home this November after yet another surgery. He could recover at home with his family, thanks to visits from a skilled nurse and specialized equipment.
Someday, Maceo could be independent even as his condition worsens. He could fulfill his dream of being a train conductor.
State officials agreed Maceo needed the at-home care – but the boy would have to wait years to get it.
Congress does not require states to cover home-based care. States need a Medicaid waiver to use federal funds for those programs and can arbitrarily cap how many people they serve. The only other place Maceo could find the care he needs is a nursing home or intermediate care facility. If Cooper chose to send him there, federal rules require Arkansas to pay for it without delay.
Plus, care at home and in the community is, on average, three times cheaper than institutional treatment, research shows.
But in Arkansas, legislators only budgeted enough money to provide Medicaid waivers to 8,233 people. Maceo is among thousands more waiting. About two-thirds are children.
Each year the list grows by about 500 people, said Melissa Weatherton, who oversees specialty Medicaid services for the Arkansas Department of Health. The number increases with births, new injuries and the deaths of caregivers who looked after a loved one with a disability.
Arkansas admits everyone on the wait list needs these services, which is why Weatherton says it’s unclear when someone can jump to the front of the line.
“Their diagnosis means they’re at risk,” she said.
By state rules, services are prioritized for people who want to leave an institution and those who are at immediate risk of entering one. When those definitions fit everyone, how do you choose?
Advocates like Cooper say no one should have to.
She is frustrated that some people focus on the money when talking about Medicaid disability services. She doesn’t see any better use for tax dollars than ensuring everyone can “thrive and become contributors to their communities.”
“We’re not gonna invest in my son and his education and the support he needs … We’re just gonna walk away …” she said, stumbling on her words as anger turned to tears.
“What kind of humans are we?”
Enforcement erosion
In June, the Trump administration shifted the way disability rights were protected in America.
The U.S. Department of Justice issued a memo questioning the federal government’s own authority to enforce the right to community-based care. It also argued states might have more power to keep people in institutions.
“Isolation could, under some circumstances, amount to discrimination,” government lawyers said in the document. “But accepting that proposition does not require a state to move institutionalized patients to ‘the most integrated setting appropriate to their needs.’”
The interpretation runs counter to decades of case law designed to protect people like Maceo, numerous legal experts told USA TODAY.
Since June, federal attorneys have cited the memo in several court filings.
The document laid the foundation for the Department of Justice to settle with suing states by erasing civil rights rules guiding federally funded health programs.
Federal attorneys also have asked courts to vacate decisions they previously won. That includes seeking to reverse a ruling that found Florida violated the rights of children like Maceo by placing them in nursing homes rather than providing home-based care.
The Trump administration’s shift on disability rights has drawn left-leaning condemnation from elected officials.
Governors from 18 states, all Democrats, signed a letter saying they would defend the right to community-based care, which is also known as the “integration mandate” of the Americans with Disabilities Act. More than 100 members of Congress, including four Republicans, wrote letters and introduced resolutions affirming the right of disabled people to live in their communities.
Disability advocates say that until Trump reverses course or a friendlier administration is elected, they will redouble efforts at the state level.
“One of the most important things that advocates can do is actually focus on getting their states to commit to the integration mandate,” said Jennifer Mathis, deputy director at the Bazelon Center for Mental Health Law and a former federal prosecutor leading the defense of disability rights.
That will hinge on the work of ordinary people like Cooper.
Fight
In August, Cooper recognized her own frustration in another Arkansas mom’s Facebook post.
Paige McCammon’s 2-year-old son had been admitted to the hospital after seizures caused by a neurological condition that doctors say will worsen with age.
“I have fought so hard to make people understand that children like Turner cannot sit on waiting lists for years while everyone acts like their needs will stay the same,” she wrote. “His disease does not pause while we wait for help. He is already sick, and his needs are already increasing.”
McCammon, a school counselor, asked her followers to call and email the governor to demand a special legislative session “for the more than 2,000 Arkansans with disabilities still waiting for the services they need to safely live in their homes and communities.”
Cooper sent a Facebook message to the stranger. She understood her aching heart so well.
Soon she was joining group calls to organize a rally. Until people with disabilities truly have equal opportunity in America, Cooper said advocacy will be “my job.”
“I’m gonna fight,” she said.
Standing among other parents at the state capitol, Cooper finally saw a path forward for her son and thousands of others like him.
Jayme Fraser is an investigative data reporter at USA TODAY. She can be reached by text or on Signal at (541) 362-1393 or by emailing jfraser@usatodayco.com.
This article originally appeared on USA TODAY: Disabled Arkansas kids wait years for care. How parents united to fight
