The U.S. Department of Justice has determined that Maine has been violating federal law for years by not providing a man who has several disabilities and medical conditions with the help he needs in his home to go about his daily life, in a finding that could have ramifications for many more people with disabilities.
The state must grant him the services he is eligible for, and protect the civil rights of other people with disabilities who need support services, or else potentially face a lawsuit, according to a Feb. 10 letter from the Justice Department to the Maine attorney general’s office.
The letter could have major implications for where people with intellectual and developmental disabilities who require around-the-clock care can live. Currently, the state requires those with higher needs who are receiving Section 21 services to live in group homes, instead of allowing them to live at home with family members and have support staff come to them.
Now, the federal government is asking that Maine make it possible for them to receive services at home.
“I think it will just give people a much broader array of options and choices of where to live,” said Staci Converse, an attorney with Disability Rights Maine, which was not involved in the Justice Department’s investigation.
A spokeswoman for the Maine Department of Health and Human Services said it is reviewing the Justice Department’s letter “in close consultation with the attorney general’s office to determine next steps” and that its goal is “always to ensure that adults with developmental disabilities and autism receive the necessary services that best meet their needs.”
Others who care for people with disabilities questioned how the state will be able to meet the demands laid out by the Justice Department, given an ongoing struggle to find workers.
The Justice Department began investigating in May 2018 after receiving a complaint from a parent on behalf of an adult son who needs help with “all daily life activities,” according to the department’s letter. He is not named. After receiving Section 21 services for five years, in 2014 the state limited his assistance to 84 hours per week, while acknowledging that he actually needed 168 hours of services per week, according to the letter.
Section 21 pays for workers to help people with intellectual disabilities and autism perform the daily tasks of life, such as eating, dressing, going to appointments, volunteering, socializing and working. It’s funded through Medicaid with state and federal dollars.
Having the man receive reduced care “is not sustainable,” the letter states. “Although his parents assist as much as they can, both are aging and have physical limitations that render them unable to consistently or effectively assist their son.”
His only other options are to live in more institutional settings, such as an intermediate care facility or group home, which places him “at serious risk of unnecessary segregation,” according to the letter. “[U]njustified isolation is a form of discrimination” prohibited by the Americans with Disabilities Act, the U.S. Supreme Court held in its 1999 decision Olmstead v. L.C.
“The state was basically saying to him, ‘If you move to a more restrictive setting, you can get all of the hours of services you need. But if you want to stay in the community, you’re only going to get half of them.’ And that would be a violation of the ADA and the Olmstead case,” Converse said.
The Justice Department is asking Maine to voluntarily address the violation or else face action in court.
In addition to seeking remedies for the man, such as by paying compensatory damages, it is also requesting broader changes. It’s asking the state to establish a way for people to obtain an exception to the 84-hour-per-week cap, which was instituted in the early years of the LePage administration. It’s also asking the state to publicize how that exceptions process will work and provide the federal government with written reports on its progress.
It’s not clear yet how the state might provide more services to people at home, especially as the number of people waiting for Section 21 services has topped 1,620. Combined with a similar program, Section 29, more people are waiting for assistance than ever before.
At the same time, organizations have struggled to find direct-support professionals to help people with disabilities.
But the longer people go without services, the greater the likelihood that they will deteriorate, fall into crisis and require more expensive emergency room, crisis stabilization or psychiatric care, said Cullen Ryan, executive director of Community Housing of Maine, which develops and maintains affordable housing, including for people with disabilities.
“There has been a crisis that’s been in place for a long period of time with people who are unable to access the services that are needed. I hope [the Justice Department’s letter] will be a catalyst,” Ryan said. “If people have their needs met, no more and no less, then that’s the least expensive way to have things work.”
The need to address the gap in services for people who require more than 84 hours of in-home support per week is long standing, and has forced many to choose between insufficient or overly broad services, said Laura Cordes, executive director of the Maine Association for Community Service Providers.
But even if someone receives authorization for more than 84 hours of services per week, there are not enough workers to meet their needs, she said. The current Medicaid reimbursement rate provides for an hourly wage that is below the legal minimum wage of $12 per hour.
The organization OHI needs 220 direct-support professionals to help clients with intellectual disabilities and currently has 50 openings, said Bonnie-Jean Brooks, president and CEO. Providing more direct care “is not possible with the workforce crisis we have,” she said.
Group homes are not allowed to have isolating environments, she said, but a lack of workers has sometimes limited services that would bring clients into their community. “Even though organizations are doing their level best, the state agencies are doing their level best, you can’t create bodies to fill positions when they’re not there,” Brooks said.
“We stand ready,” Cordes said, to work with DHHS and lawmakers “to implement the recommendations of the Commission to Study Long-Term Care Workforce Issues,” which proposed increasing the wages for direct care workers to no less than 125 percent of the minimum wage.
Maine Focus is a journalism and community engagement initiative at the Bangor Daily News. Questions? Write to firstname.lastname@example.org.