Nearly 40 years ago, Victoria McMullen and her husband traveled from St. Louis to Sikeston to adopt a six-year-old boy with severe developmental disabilities named Ron.
Now 44, Ron has cerebral palsy, autism and intellectual disabilities. He’s unable to live independently and for the last 23 years his parents have relied on a state service to help pay for in-home caregivers to provide the intensive assistance he needs.
The service, called Self-Directed Supports, lets McMullen hire, train and manage the staff herself, tailoring the help to Ron’s needs. Caretakers, many of them local university students, work with Ron 13 hours a day, helping him go to the bathroom, do physical therapy, bathe and dress, as well as doing social activities with him like cooking.
Without that funding, McMullen would be unable to care for him, especially after a back injury left her unable to physically support or help lift him.
“We could not do it without it negatively impacting our health,” she said.
This year, McMullen wrote to state lawmakers urging them to put more money into pay for direct care workers who assist those with developmental disabilities.
The staff hired through Self-Directed Supports, as well as through traditional home health agencies, desperately need a pay bump, she said, noting one of Ron’s caregivers works 40 hours a week, needs to buy her own insurance and rarely can afford to take time off.
She was pleased in May when the legislature voted to raise the rates for caregivers. But the good news quickly soured.
Missouri’s Department of Mental Health announced in July that the program Ron and 3,030 individuals around the state rely on could be excluded from the rate increase.
Complicating matters even more, state regulators have proposed a change in how it calculates rates for the Self-Directed Supports program, a situation advocates fear could mean rates are frozen at low levels or become unpredictable.
The proposed change in the rate calculation is open for public comment until Monday. It would remove the regulation linking the rate the state pays for direct services to the rate they pay home health agencies.
“It makes it difficult to keep and maintain staff if we can’t offer competitive wages,” McMullen said, adding that the Self-Directed Supports staff need higher wages than staff hired through home health agencies, because the former are not provided benefits.
The state has not offered a rationale for proposing the changes to the program’s rates, beyond the procedural. Debra Walker, spokesperson for the Department of Mental Health said that “Currently [Self-Directed Supports] is the only service with rate parameters within [Missouri Code of State Regulations],” and the removal of that language from the regulations will allow the state to “fully align” rate methodologies for all of its Medicaid home and community-based services.
Families using Self-Directed Supports say the changes caught them completely by surprise.
“If they’re going to make changes like this without our input, what other changes are they going to make?” McMullen asked.
Adam Sommer, an attorney and podcaster who lives in Warrensburg and has a daughter, Clara, with a rare genetic condition called Rett syndrome, uses Self-Directed Supports to cover her caretaker. She can’t talk and uses a screen in front of her that allows her to communicate with her eyes.
He said the state hasn’t told them how they plan to calculate the new rates.
“What do we tell the employees who have these jobs what their future looks like?” he said.
“It’s a very complicated system, that they are changing while no one’s really looking in a way that creates more uncertainty and more complication. And that could cause some really big problems for people,” Sommer said.
‘Why should we be treated differently?’
Self-directed services are part of a national trend over the last few decades away from institutionalization and toward community-based support and integration — based on the belief that decisions about an individual’s care are best made by those closest to them.
The premise of Self-Directed Supports “is that when individuals have control of their resources their quality of life will improve and the overall cost of services will decrease,” according to the state’s manual on developmental disabilities.
In Self-Directed Supports, someone called a designated representative, often a family member, is in charge of overseeing staff, including recruiting, hiring, training and supervising them, and has the flexibility of choosing how to allocate a yearly budget. They are not paid for the administrative work.
That representative acts as the employer. It’s a task many families may not have the time or ability to do. But advocates argue that although the program is not right for everyone, it’s a choice that should be preserved.
McMullen said she performs an average of one hour a day administrative work, as Ron’s designated representative.
Larry Opinsky, a disability advocate and steering committee member of an advocacy group composed of over 700 Missouri families using Self-Directed Supports, has been vocal in his opposition to the state’s proposals.
Opinsky’s 24-year-old daughter, Lilly, also has Rett syndrome, and is nonverbal and unable to walk. She “requires full-time assistance with everything she does.”
His family has been utilizing Self-Directed Supports for around 12 years, Opinsky said, particularly drawing caregivers from local universities. The freedom for the caregivers to work within their schedules, making arrangements directly with the family and getting to know them closely “gives them a better opportunity to connect with [Lilly] and create a deeper caregiving bond.”
Opinsky said home health staffing agencies are often short-staffed, so they’d be unlikely to find staff that way if they tried. And they prefer finding caregivers themselves: often they are community members who may not otherwise be brought into the formal caregiving world, he said, who forge bonds with Lilly.
The service allows him and his wife to work.
“Without this support,” he said, “without having self-directed services and this team that we were able to bring on, it would be on my wife and I…And we would be struggling to make the bills.”
He said the state’s appearance of preference for agency-based care over self-directed services is especially concerning.
“Why are they discriminating against us because we choose to self direct?” he asked. “Why should we be treated differently than the providers who are doing the exact same service in the exact same locations?”
The Department of Mental Health did not respond to requests for comment.
Opinsky said his group is in contact with Missouri Protection & Advocacy, the federally-mandated program providing legal support to protect individuals with disability.
A staff attorney at the organization told The Independent by email that the group is “aware of this issue” and is “monitoring and evaluating the situation.”
Little discussion of true costs, advocates say
Advocates say a rate study should be conducted before any funding is changed— so that if a change is needed, the state could determine how best to calculate the Self-Directed Supports rate moving forward, using data.
“They tried to pull this off without anybody paying attention…this needs to be done in the open with a full study,” Opinsky said.
The Missouri Department of Mental Health did not respond to requests for comment.
Advocates also say it’s not necessarily true that home health care agencies need higher rates to cover overhead costs.
Families say because they can’t provide employees benefits under self-directed services, but agencies can, they need to pay a higher wage to make up for it.
“Our employees need to be compensated at a higher rate, because we’re not able to provide the fringe benefits that providers can,” Opinsky said. “We not only won’t be able to necessarily attract the same quality employees, but we’ll also have difficulty retaining our employees if they de-link this.”
There was a rate study last year the state conducted to determine average wages for staff serving home and community-based health services — but the survey did not evaluate self-directed waiver services.
Some advocates believe that self-directed services actually save the state money, because family members do the administrative work for free and it prevents some individuals from needing more-expensive institutionalized care.
And the state’s manual notes an overall cost of services decrease is part of the premise of the program.
The National Association for Home Care & Hospice, which represents home care organizations across the country, said by email that although it doesn’t take positions on how states should establish different reimbursement levels, states should take into account the various responsibilities of providers when calculating rates.
“Many states place higher demands on homecare agencies than they do on self-directed providers, most commonly around things such as supervision, scheduling, physical office locations, quality reporting, and similar requirements,” said Damon Terzaghi, director of Medicaid Advocacy at National Association for Home Care & Hospice.
“When there are more stringent requirements placed on agency providers, it is appropriate to have differentiated rates that take the variable mandates into account.”
Cheryl Dennison, of Chesterfield, whose son has has been using Self-Directed Supports for around 11 years, said the staff she has hired have often stayed for years, rather than quickly turning over, and some have come to be like family to them — all of which has prevented her 27-year-old son from going into residential care.
Her son, Jake, has a brain malformation, along with a seizure disorder, cerebral palsy, and physical and intellectual disabilities.
“If we couldn’t take care of Jake in our home, he would move to some kind of institutional living, which costs significantly more than keeping them in our home,” Dennison said. “So I would think the state and federal agencies see that and that they would want to keep perpetuating that.”
“It’s such a brilliant program. They shouldn’t shoot themselves in the foot now to freeze the rates.”
This story was originally published by the Missouri Independent, part of the States Newsroom.
