Parents of disabled confused as state revisits rule change

by Jordan Green

State health officials told lawmakers and parents in January that that they had decided to indefinitely postpone an April 1 deadline for implementing a controversial rule change that would prohibit legal guardians from getting paid to care for their adult children with developmental disabilities and would limit parents to 40 hours a week of paid work.

So it was particularly frustrating for Mary Short – whose 27-year-old daughter Katie suffers from a condition known as tuberous sclerosis complex that leaves her major organs calcified and means she requires 24-hour supervision – to be told by her case manager at Family Preservation Services of Charlotte that she needed to submit a plan of care that followed the exclusion provision for legal guardians and the limitation on weekly work hours.

“The case managers here are informing parents for the first time that we all have to be in compliance by April first and we all have to submit a plan of how we’ll be in compliance by April first,” said Short, who lives with her daughter in Davidson, on Feb. 21.

“I told my case manager my plan is, I will notify the court and resign as guardian, and inform the court that they need to appoint someone as guardian, and that guardian better get busy,” Short said. “If I’m not her guardian I don’t get to make decisions for her. I certainly am not going to have some guardian tell me that she has to live with me. The only thing that establishes any relationship is the fact that I am her legal guardian. I am about to cry.”

Short currently receives payment from federal Medicaid funds for 84 hours of care. The rest is voluntary. If she were cut down to 40 hours of paid care for her daughter, Short estimates that she would have to be paid $16 per hour to meet expenses.

“I am so scared,” she said. “I don’t want to throw Katie out on the street, but I don’t know what else to do. I won’t watch her being tortured and abused. It’s so stupid.”

Parent-caregivers breathed a collective sigh of relief in early January when top-ranking officials from the NC Division of Mental Health, Developmental Disabilities and Substance Abuse announced before the legislative committee that oversees their agency that the rule change would be indefinitely postponed. The only problem was that until Feb. 21, when the division posted an update on its website, case managers and ValueOptions - the private company contracted to oversee Medicaid payments – had no official notice of the postponement.

“The only written source of information our company has had regarding this amendment has been what is posted on the website,” said Susan Bruton, Mary Short’s case manager at Family Preservation Services, in an e-mail to YES! Weekly on Feb. 23. “We have had information given to us from families and other provider agencies, but without anything official.”

Bruton said she has told families they need to have any revisions to plans of care submitted by March 1. Even under that timeline her agency would not have enough time to find, hire and train staff by April 1, she said.

The confusion has prompted parent-caregivers to frantically track down division heads and implore them to take action. Short visited Division of Medical Assistance Director Dr. Allen Dobson at a medical office where he works in private practice in Concord on Feb. 13. The Division of Medical Assistance, like the Division of Mental Health, operates under the umbrella of the NC Department of Health and Human Services.

“I told him, ‘What I need you to do as DMA is stop this; make this go away,'” Short said. “He said he was unaware that ValueOptions was implementing the change. He said he would take care of it ‘today.'”

“Implementation Update #23,” issued a week later by the Division of Mental Health, puts in writing what Deputy Director Leza Wainwright promised in January – that the April 1 deadline for implementing any rule changes would be postponed indefinitely.

And while nothing has been formally announced, officials have told parents that the provision prohibiting legal guardians from providing paid services to their adult disabled children will be scrapped.

“He told me that the guardianship issue was off the table,” Short said of Dobson. “There was going to be no change in the rules for guardianship. He totally understands that families are guardians for medical reasons. And he doesn’t have any problem with paying families of adults to perform these services.”

Wainwright confirmed that in a Feb. 21 e-mail to Esther Murray of Greensboro. Murray’s wheelchair-bound daughter, Sheila, is diagnosed with Angelman Syndrome, a condition that periodically requires her esophagus to be suctioned out and causes her to suffer from insomnia.

“We announced that the restriction on guardians of the person also serving as a paid caregiver would be removed,” Wainwright wrote to Murray. “We also discussed the number of hours that any caregiver - related or not – could provide, but did not reach a final conclusion.”

A proposed policy change distributed by division staff at a stakeholders meeting in Raleigh on Feb. 16 indicates that the division might limit parent-caregivers to 50 hours of paid work for a seven-day period or 172 hours for a calendar month. The hand out included no information identifying the responsible agency or official.

“Through the whole meeting they were going to make no exceptions to the forty hour [cap on paid hours],” said Carrie Klees, director of community services for Arc of Greensboro, a service provider and advocacy organization. “Then the last thing out of Leza’s mouth was, ‘If you have any recommendations on the forty-hour limit, get those to us in writing by Wednesday.'”

Both Wainwright and Mike Moseley, director of the Mental Health Division, told Murray in separate e-mails that they hoped to make a decision about the proposed cap on hours of paid work by the end of the week. On Feb. 23, Department of Health and Human Services spokesman Brad Deen said state officials were meeting with lawmakers that day and no decision had been finalized, but he expected an announcement the following week.

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