State Officials Hear Caregivers’ Distress About New Rule
Low moans and the occasional muted outburst filled the auditorium at the technical center on GTCC’s Jamestown campus as young adults with a variety of disabilities, some parked in wheelchairs along the outside aisles, and caregivers engaged in a tense give-and-take with representatives of the state of North Carolina’s assistive healthcare bureaucracy on Nov. 29.
The proto-linguistic utterances seemed to rise in pitch and agitation as parents angrily voiced their objection to a new state rule scheduled to go into effect on Feb. 1 that would prohibit legal guardians from being paid with federal Medicaid funds for the care of adult children with severe disabilities.
The four bureaucrats facing the audience from the stage came from the NC Division of Mental Health, Developmental Disabilities and Substance Abuse Services, the agency tasked with running the state’s four psychiatric hospitals and supporting persons with disabilities in their homes and communities. Division Director Mike Moseley stood at the podium, while the division’s deputy director, the chief of advocacy and customer services and the chief of clinical policy sat at a long table.
That the public meeting took place weeks after the division announced the new prohibition against parent caregivers was entirely coincidental, Moseley said. The division had scheduled meetings across the state two years earlier to hear from citizens, and this particular meeting was in fact set up because the division inadvertently scheduled a meeting for the upper Piedmont region in Winston-Salem on Election Day.
The bureaucrats anticipated the unrest from the start of the meeting.
Moseley told the gathering that the division was “making mammoth changes throughout our system” and that although the meeting was not scheduled specifically to discuss the new rule he knew that was foremost on the audience’s mind, adding that “we are not going to engage in a dialogue that tends to fall apart.”
As his six-year-old son squirmed in the front row, Charlie Hammonds, a single parent from Greensboro who cares for a 25-year-old daughter, stood before the division administrators. He spoke in a trembling voice as daughter Alena, who lives with cerebral palsy, sat beside him in a wheelchair.
“She’s not just my client,” the father said. “She’s not just my daughter. She’s my best friend. I had to give her CPR. I’ve gone to see my daughter at the Laundromat and found her sitting in soiled diapers’…. These people that come into our homes are abusing our kids’…. It’s rough. I gave up my job. I gave up my benefits of fifteen years. My six-year-old son is uninsured.
“I’m not trying to beat nobody down,” he continued. “You tell me I have to give up my guardianship to care for her. This is my life twenty-four seven. If you want to come spend the day with me I’ll buy you breakfast, lunch and dinner.”
Nearby, another parent-caregiver from Greensboro, Esther Murray, said she came home to find a home health aide smoking marijuana on her porch while her daughter, who lives with a condition called Angelman Syndrome that leaves her immobilized and unable to speak, was left unattended inside. Other parents complained that home health aides have stolen from them, failed to show up for work and slept on the job.
Ultimately, Murray and the others decided, the parents themselves are most qualified to provide care for their own children.
“I am her best caregiver,” Murray said. “I don’t know how y’all have the right to make decisions for us.”
As if to underscore the unlimited commitment required of parents of children with disabilities Charlie Hammonds held a water bottle to his daughter’s lips and then dabbed a napkin at the sides of her mouth to absorb the excess liquid as Murray spoke.
The division’s leadership provided a number of rationales for the new rule, none of which seemed to satisfy the parents who packed the auditorium. Among the reasons mentioned were cost controls, restrictions imposed by federal guidelines and the division’s sense that there is a built-in conflict of interest when a legal guardian is paid to provide care for a dependent.
The division lifted the individual cap of $85,000 per year on what the state calls “person-centered plans” in December 2005, Deputy Director Leza Wainwright explained, adding that “starting in January of this year the floodgates opened and we started receiving lots and lots of plans that came in over $85,000.” She added that the federal Centers for Medicare and Medicaid Services “is very clear that” parents are only supposed to be paid to provide care “when there is no other provider in the community.”
“You’re convinced that there could never be a conflict of interest,” she said, “but you have to take a step back and look at it with that critical eye, that neutral eye. I don’t know about you, but I tend to think I’m doing a pretty good job. That’s why I have someone evaluate me.”
The rule change was initiated as a joint effort between the Division of Medical Assistance, which is responsible for administering Medicaid funds, and the Division of Mental Health, Developmental Disabilities and Substance Abuse Services, Moseley said, adding that the state met with heads of “major advocacy groups” before drafting the rule.
The Medicaid program known as CAP-MR/DD, short for the Community Alternatives Program for Persons with Mental Retardation/Developmental Disabilities, operates under the oversight of the federal government, he said, and the state was required to submit an amendment to the feds for approval.
Pam Stubbs, district director for US Rep. Mel Watt, confronted Moseley midway through the meeting, later explaining that she thought audience members were left with the impression that the rule change was imposed by the federal government.
“The agency has the right to write a policy,” she said later. “They have the right to revise a policy. This is not a law written by the federal government’…. If the Department of Health and Human Services thinks it should be revised, then they have the right to submit an amendment [to the feds]. It’s no such thing as a done deal.”
NC Rep. Alma Adams, standing next to fellow Greensboro Democratic Rep. Pricey Harrison, said she has asked the NC Department of Health and Human Services to reconsider the implementation date of the rule change. She encouraged audience members to call other members of the General Assembly to encourage them to do the same. Harrison, in a handwritten note to YES! Weekly, called the rule “an awful idea.”
Rep. Laura Wiley, a Republican from High Point, was also present. Rep. Maggie Jeffus, a Greensboro Democrat, appeared near the end of the meeting.
After the last parent had spoken Moseley remained noncommittal.
“We will take these issues under advisement,” he said.
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