Alabama violated the civil rights of thousands of disabled and elderly residents who rely on support from the state to get care in their communities, a federal lawsuit alleges.

The Alabama Disabilities Advocacy Program filed the lawsuit on Feb. 12 against Alabama Medicaid and the state Department of Senior Services on behalf of 18 Alabamians, including 12 children who have disabilities.

“The community-based care net is crumbling,” said Shandra Monterastelli, a senior staff attorney at the Alabama Disabilities Advocacy Program.

According to the lawsuit, 12,000 individuals who are on the state’s elderly and disabled waiver — a program that helps people receive long-term care at home or in their communities — have had their civil rights violated by the state. ADAP is pursuing the lawsuit as a class-action on behalf of all 12,000 Alabamians.

“Through consistent and unabated legal violations, the State creates such extreme barriers to access that obtaining the services to which recipients are entitled is nearly — or, in many cases, actually — impossible,” the lawsuit states.

People enrolled on the waiver are supposed to receive bi-weekly payments to help pay bills, buy food, and purchase medical equipment, as well as to pay for nurses and health care providers to assist with treatments or give caregivers respite. But because of the “systemic failure” of the state, thousands of people struggle to access these services.

“The whole point of this program is to keep people from being unjustly institutionalized,” said Monterastelli. “This lawsuit is about getting people access to the services they need so they don’t have to be warehoused in these facilities.”

For many kids in this program, the nearest institution they could be placed in is in Texas.

The lawsuit alleges that there is a “consistent failure of the State, at the highest levels” to administer the waiver program, violating recipients’ 14th amendment rights as well as the Medicaid Act, which provides these community-based services to people with disabilities.

ADAP previously filed a federal complaint against the agencies in 2022 alleging many of the same things they state in the class-action lawsuit, prompting a federal investigation by the United States Department of Health and Human Services.

In the initial complaint, the advocacy organization said the department of senior services and Alabama Medicaid have denied clients services without due process, misrepresented what services are available to families and what services they are entitled to, and failed to maintain enough health care providers in their system, leaving family members to oversee medical care, a responsibility so time intensive that it sometimes forces them to leave their jobs.

But according to Monterastelli, ADAP and the families felt they needed to escalate their complaint by filing a lawsuit because “we have been repeatedly bringing the same concerns to ADSS, but we really just were not making any headway in actually remediating anything.”

Alabama Medicaid did not respond to a request for comment. A lawyer for ADSS said the agency “cannot comment on pending litigation.”

‘Families are drowning’

Kelly Morris has two children who are plaintiffs in the lawsuit. Her 26 year-old daughter, Michaela, has been on the waiver program since 2006, while her son, who is 17 years-old, has been on it since 2013.

Both of her children need nursing-level care because of their medical conditions. Michaela has intestinal failure, chronic lung disease and chronic bladder dysfunction, requiring a permanent IV tube and a machine to help her breathe. Her son, identified only as G.M. in the lawsuit, requires a feeding tube for a condition affecting his esophagus.

Morris said she spends almost all of her time overseeing the care for her two children, although she is not a nurse and has no medical degree.

She said she’s missed out on the milestones in her four other kids’ lives because of the level of care she has to give Michaela and G.M.

When Morris asked the Department of Senior Services to get a skilled worker to help Michaela and give her respite, the suit said the state granted her less than half of the hours she requested after a nursing assessment was done to evaluate what Michaela’s needs were.

It was the first assessment Michaela had in 16 years on the program, yet, according to the lawsuit, ADSS did not provide the nurse performing the assessment with any guidelines or formalized criteria.

The assessment determined that although the state would give her more pay to hire a nurse, there were no providers available in her region of north Alabama.

“Families on this program are drowning,” said Morris. “I’m not gonna live forever. I could be in a car wreck tomorrow, and then what would happen to my kids?”

‘A Southern problem’

Along with Cristi Cain, another mother whose son is a plaintiff in the case, Morris spends a lot of her time helping families understand what they are entitled to under this program and trying to raise awareness with lawmakers about their plight.

“Some of these parents have been lied to and denied constantly for years and years, like myself,” Morris said. “We try to educate them and there’s a lot of handholding and breaking down the walls of the lies and gaslighting that we’ve all been subjected to for all this time. Then trying to fight the system and work with the one resource we have that is just not up to par. I’m just up to my ears.”

Most of the families have joined a Facebook group where they share information about the program, updates on their cases and ask for help when they’ve encountered another problem or denial. Many say the group and other families are the only resource they have when the state agencies fail to communicate or answer any of their questions.

“We are seeing a strong grassroots movement among individuals who are impacted who have been sounding the alarm for a long time, but are also working together on solutions,” said Dom Kelly, the president of New Disabled South, an Atlanta-based organization working to advance disability rights.

The organization has focused much of its work on trying to bring awareness about the importance of community-based waiver programs throughout the region, which have been “historically underfunded programs for disabled people,” Kelly said.

Many of the issues Kelly sees in Southern states are not just how the waiver programs are administered, but how long people have to wait to get on them.

“Out of the waiting lists for these waivers, nationally, 75% are here in the South. So this is really a Southern problem,” Kelly said. “We’ve gone from, just as recently as the 1970s, institutionalizing people with disabilities to now having a system in this country that’s supposed to provide for the needs of our community, but instead is leaving people kind of waiting on these lists for sometimes more than a decade and not receiving the care that they need.”

Cain said she waited for almost a year to get her son on the program after initially being told her household income was too high to qualify.

Her 12 year old son, listed as J.H.C. in the lawsuit, has a rare genetic disorder and a variety of health concerns that can cause him to have 40-50 seizures a day. But the state has only given Cain 30 hours a week of waiver payments, according to the lawsuit, despite her having to leave her job to care for her son. She receives $17 an hour for her caregiving.

When she asked for an increase to 90 hours last year, the lawsuit said, the department of senior services denied her request and told her “if this individual is needing this much care, then they should be in a facility.”

“The fact that she said it in my home to my face, that my child really should be in an institution was beyond absurd,” Cain said. “I’ve been told that you wouldn’t put your dying dog in these institutions. And frankly, the thought of putting my child in an institution has never crossed my mind. I would sacrifice everything to keep him at home where he belongs.”

She appealed their decision until they agreed to do a nursing assessment in July — again without any formal guidelines from the department. In December, the department gave Cain an increase of eight more hours, far less than what she asked, and was not given an explanation as to how the nursing assessment determined those hours, the suit said.

According to the lawsuit, “ADSS has ignored their repeated requests for any documents relating to his nurse assessment…preventing J.H.C. and his family from exercising his due process right to lodge a meaningful challenge to the service award.”

“I know people look at it as well, you’re just wanting to get paid to take care of your child,” said Cain. “But at the same time, I can’t work. There’s nobody that’s gonna hire me and allow me to be off or come in late or leave early for months on end to take care of him.”

Still, she helps other people on the program with the bit of free time she has because she knows they don’t have any other support.

“I help where I can because there’s no shortage of people that need help from this program that aren’t being serviced by the agencies tasked with running this program,” Cain said.

The lawsuit is still in its early stages, meaning it’s difficult to know how quickly it will move forward, ADAP said.

“Our hope would be to be able to come to an agreeable resolution that is going to provide these families and these recipients with the access to care that they need without having to engage in a protracted drawn out process,” Monterastelli said.

The lawsuit does not seek money or damages, but are instead asks Alabama Medicaid and the Department of Senior Services to remediate their “systemic, consistent failures” to provide services and act in accordance with the constitution and federal law.

“It’s really important to emphasize that this program is the difference between being able to live at home with your family and being segregated in an institution where their needs may not be safely met,” Monterastelli said.