Parents-caregivers getting downsized?

by Jordan Green

The 25-year-old woman with short and tousled brown hair is parked in a wheelchair in front of the television on this, the last Saturday of 2006, watching Rocky IV – the one where the Philadelphia lunkhead-pugilist goes to the Soviet Union to face down the Evil Empire on behalf of freedom and liberty.

It’s a good flick. With her head resting on a curved support brace, Alena Hammonds’ eyes follow the action and her face is inscribed with a look of relaxed contentment. The sun is out, and the air is just warm enough to have the front door open and let some breeze sift through the living room.

Hammonds’ slender torso and limbs are clad in a pink shirt-and-pants ensemble. She wears white tennis shoes, size 1 – the same as her 7-year-old brother, Takoda.

The Hammonds have returned to Greensboro from Lumberton, where they spent Christmas with father Charlie’s family. Charlie’s mother died more than two years ago.

“She was my heart,” he says. “And she loved Alena.”

As his father talks, Takoda wordlessly delivers a can of Mountain Dew to him from the kitchen.

Later, the boy will plop down on the floor in front of his sister, tie her shoelaces, and then fold her legs lotus-style in the seat of the wheelchair. All the while she watches him and her eyes sparkle with adoration.

Charlie, too, seems to possess an uncanny ability to discern Alena’s wordless communications. She whimpers a little and shivers. He rises from the couch, walks across the room and shuts the front door. She watches him and smiles, and her eyes follow him as he retreats into the kitchen to put something away.

Alena has been confined to a wheelchair for most of her life. She suffers from a type of cerebral palsy that affords her little control over her muscles. She requires assistance for such basic routines as eating and bathing, and her father must periodically use a mechanical suction machine to remove accumulations of mucus from her throat.

Charlie estimates that Alena’s mental capacity is 50 to 75 percent of what it should be. Although she cannot perform math problems or communicate verbally, Charlie believes that his daughter possesses a keen understanding of her surroundings and the passage of time. She does some activities on a laptop computer.

Charlie gave up a job as a paint contractor last July to be Alena’s paid caregiver.

He outlines multiple instances of incompetence and dishonesty on the part of the professional caregivers employed by Health Force, a privately held company with offices in Greensboro, Raleigh, Durham and Greenville. Once he found Alena sitting alone in the family van at a Laundromat, her pampers soiled, while her caregivers were washing clothes, Charlie says. Another time he says the workers asked him for gas money and he discovered that they had spent it to get their hair done at a beauty salon.

One particular incident was life-threatening, and required Charlie to come home from work.

“The caregiver’s calling me when she’s having a seizure,” he says. “She should be doing what she’s trained to do. I had to come back and give CPR. The caregiver said, ‘Charlie, I don’t know what I would have done without you.’ That was the last straw for me.”

Calls to Health Force’s offices in Greensboro and Raleigh last week requesting comment on the allegations made by Charlie Hammonds were not returned.

And Health Force is not alone in being the target of allegations of substandard care. Charlie Hammonds’ allegations have been echoed in public meetings and interviews by at least a half dozen parents from Davidson to Greensboro, including anecdotes about employees showing up drunk or not at all for work, sleeping and using drugs on the job, and stealing. One parent, Mary Short of Davidson, says she pulled her daughter out of a group home because she would periodically discover unexplained bruises on her daughter’s body. And many parents express concern that if their children were being neglected or abused they would never know because in most cases the children cannot speak.

Charlie estimates that he took an $18,000 cut in annual pay to make the job switch, not to mention giving up health insurance for himself and Takoda. This month he has to schedule a physical and tuberculosis test at a cost of $90 – money that will come out of his pocket. Community Support Services, the agency that pays him with Medicaid funds, makes the annual tests a condition of his continuing employment.

The federal program that pays Charlie to be his daughter’s caregiver is called the CAP-MRDD Waiver. That’s short for “community alternatives program-mentally retarded/developmentally disabled.” Its purpose is to keep mentally retarded and developmentally disabled adults out of institutional facilities and allow them maximal integration in the community, which, practically speaking, means living at home with their families. Since at least 2003, the Department of Health and Human Services has made it a stated goal that “people in state facilities who can be supported in communities need to move to communities.”

After Alena reached adulthood, Charlie petitioned to become her legal guardian. Although he insists that his daughter should not be considered incompetent, guardianship entitles him to make important life and death decisions for her and, on a more basic level, allows him to articulate Alena’s needs to any of five different special doctors who see her.

“You have to make sure they’re understanding Alena correctly,” Charlie says. “It’s almost like I’m her mouth for her.”

Charlie acknowledges that his decision to become Alena’s guardian was also made partly because of his concern about the care she received from her mother with whom he is separating and who is herself a former employee of Community Support Services.

“There were some problems with Mom,” he says. “Mom went down that bad road.” Later he adds, “Alena and I went on a Methodist retreat. When we were coming home, Alena let me know she wanted to come back with me. She didn’t want to be in that environment that she was in at Mom’s house.”

For parents like Charlie Hammonds, there is no point at which their children will develop fully enough to venture into the world and establish their independence. If anything, their adult children may over time become more dependent rather than less. The need to care for another being that is so helpless crystallizes a sense of purpose in some individuals.

“Alena’s gave so much through her lifetime,” Charlie says. “These could be her last days. Why not give her the happiness that she gives to other people just through her smile?”

Later, he adds: “She’s had a very full life…. If she had been born today with her condition she would have been able to have a normal life. She goes to give blood so the doctors can learn how to prevent this. Children that are born today with cerebral palsy are benefiting from what Alena’s done.”

As it turns out, the two roles Charlie and many other parents of severely disabled adults across the state of North Carolina have claimed for themselves – paid caregiver and legal guardian – have put them distinctly at odds with the state Department of Health and Human Services.

The rule change that has turned these families’ lives upside down was published on Oct. 27 under the heading, “Implementation Update #19: Clarification Regarding Family Members as Paid Providers Under CAP-MRDD Waiver.” Its authors are Michael Moseley and Allen Dobson, respectively the heads of the state’s Division of Mental Health, Developmental Disabilities and Substance Abuse Services, and the Division of Medical Assistance.

The announcement states: “Payment to legal guardians, including general guardians, guardians of the person, and guardians of the estate, for any waiver services is prohibited under the CAP-MRDD waiver, with the exception that legal guardians of the person may provide residential supports if they are not the parent or step-parent of a minor child, including biological and adoptive parents or spouse.”

The rule change was initially slated for implementation on Feb. 1, but after parents and their supporters, particularly in the Greensboro area, raised a howl of outrage and enlisted the support of members of the Guilford County legislative delegation, the state decided to postpone the start date until April 1. Rep. Pricey Harrison received an e-mail message from Lynnette Tolson, legislative liaison for Health and Human Services Secretary Carmen Hooker Odom, on Dec. 12, reading, “This morning Dr. Allen Dobson approved the new implementation date of April 1, 2007.” A week later the Division of Mental Health formally announced the delay.

Moseley and his deputy director, Leza Wainwright, found themselves defending the prohibition against parents as paid caregivers at a public input meeting held at the Percy Sears Applied Technology Center at GTCC’s Jamestown campus in late November. The mental health and medical assistance divisions at the Health and Human Services Department concluded that there was an inherent conflict of interest when legal guardians acted as the paid caregivers for their children. Moseley and Wainwright also said the state was concerned about its fiscal duty to closely monitor the spending of tight Medicaid dollars.

Wainwright told the auditorium full of angry parents, state legislators and a staffer from US Rep. Mel Watt’s office that after the division lifted an $85,000 cap on the yearly amount of Medicaid funds able to be claimed by the severely disabled in January 2006, the cost of individual plans increased dramatically.

To this, Health and Human Services spokesman Brad Deen would later add: “We were having caregivers who take care of their children, some of them were being reimbursed for care for sometimes seventy to eighty hours a week. That’s excessive and brings up issues of safety and quality of care. It’s for the same reasons that pilots are only allowed to fly so much.”

In public meetings and interviews, several parents have questioned whether they should give up guardianship so they can remain the paid care providers for their children. A third option mentioned by some was institutionalization – an outcome they feared would jeopardize their children’s already fragile health, and one that the state is on record as opposing.

“In most cases, one parent could be the guardian and the other could be the paid care provider,” said Donna Badger, the administrator at Unique Home Care in rural Ashe County in the state’s northwest corner,

The state administrators were quick to note during the GTCC meeting and in correspondence with healthcare consumers that they had made the decision to cut parents out as paid caregivers in consultation with so-called stakeholder groups, but initially the Division of Medical Assistance was reluctant to disclose specifically who had been in on the discussions. At the time, Moseley would only tell YES! Weekly that the division had met with “some of the major advocacy organizations.”

The division’s reticence may have backfired because by the middle of December critics of the rule change were raising concerns about conflicts of interest by the stakeholder groups and suggesting the possibility of a cloaked effort to influence state government for selfish purposes.

On Dec. 15 dozens of parents and their severely disabled children meet in the fellowship hall of St. Andrews Episcopal Church in Greensboro with sympathetic case managers, two state lawmakers and lawyer Frank Johns, who has dedicated his legal career to advocating for the mentally retarded and the elderly. Johns rallies the parents by describing an array of social forces that he sees as driving the rule change. A national movement to reign in social spending is one; the profit drive of the politically connected healthcare industry is another.

“It seems to me that in-home care providers and their lobbying organizations will greatly benefit when thousands of parents are going to have to go out and look for outside services,” he tells the parents.

Those who spend their lives looking after disabled family members tend to keep close track of policy changes and spend considerable time cultivating relationships with people involved in Raleigh politics. And so the secret of which stakeholder groups were consulted about the rule change is not destined to be kept for long. The executive directors of Arc of North Carolina, the Autism Society of North Carolina and Easter Seals UCP – all nonprofits – will later confirm in separate interviews that they attended an Oct. 9 meeting with officials at the Division of Mental Health to discuss the proposed rule change.

“Arc of North Carolina is one of the largest home-care providers,” charges Paula Cox-Fishman, a sharp-tongued advocate. “Why is that not a conflict of interest?”

Later Cox-Fishman, whose advocacy efforts are self-financed thanks in part to her husband’s savings after retiring as a textile executive, sits with Katie Short, a 27-year-old woman suffering from tuberous sclerosis complex. Cox-Fishman says she became an advocate for the mentally retarded because of her sister, Pinkie, who has lived for 40 years at the Murdoch Center, a state-run intermediate care facility for the mentally retarded in Butner.

Cox-Fishman laughs with Short and engages her with a series of facial expressions. Short sits upright in a metal chair and rocks slight forward and backward. Her face is covered with lesions, the result, her mother says, “of calcification of tissues in the brain, the heart and lungs – just all the major organs.”

Later Cox Fishman will add: “There is not a statewide advocacy organization for parents. The Arc of North Carolina will say they advocate for families. They really advocate for their agencies.”

Katie Short’s mother, Mary Short’s criticism of Arc of North Carolina is even more caustic than Cox-Fishman’s.

“There truly isn’t any statewide advocacy group,” she later says. “We aren’t in touch with each other. The Arc isn’t a group that advocates for us; they’ve all turned into provider agencies. They have Medicaid contracts. When the state says ‘jump,’ they jump. Otherwise they’ll lose their Medicaid contracts.”

Dave Richard, executive director of Arc of North Carolina, said in a Dec. 18 interview that he understood the state’s rationale for imposing the rule change, but expressed some concerns to the division.

“The guardianship issue is a tricky one,” he said. “You want to be cautious because there is a potential conflict of interest. Parents, they monitor the quality of staff. When the family is the provider that check and balance gets a little confused…. The thing that we suggest is that there be an exception to that rule. For instance, if an adult child had been abused by a provider agency, we would say, ‘We need to consider an exception because a traumatic experience has occurred.’ Those exceptions have to be based on individual experiences.”

Richard added that many of the problems with outside care providers could be addressed by better compensating them for their labor.

“The biggest issue is the lack of a highly qualified pool of direct-care workers,” he said. “There are a lot of really high-quality workers, but the pay is lousy; essentially there are no benefits. [At a hearing] one man described how the worker had to leave to take care of a sick child. And who could blame him? If we enhance the salaries of those workers, then we think we can stabilize that workforce. And that’s something we’ll be working with the legislature to accomplish.”

Jill Hinton Keel, executive director of the Autism Society of North Carolina, added, “I think there was an understanding of why the division needed to look at that issue. Most of the stakeholders were interested in looking at the timeline of the plan and giving people time to adjust. And [we] also suggested that there be the opportunity for exceptions to the rule in situations where there is no other way to get services to families.”

She added that the Division of Mental Health conveyed to the stakeholders that the federal Centers for Medicare and Medicaid Services had expressed concern about families’ use of the CAP-MRDD waiver in North Carolina.

Both Richard and Keel insisted that although their respective organizations provide direct services they consider themselves to be primarily advocacy organizations, and that their input to the division had nothing to do with the possibility of increasing their caseloads.

Of the three stakeholder organizations, the head of Easter Seals UCP of North Carolina was the most critical of the rule change.

“I brought up concerns about the guardianship issue,” said Executive Director Connie Cochran, whose organization serves and advocates for people with a wide range of disabilities. “A lot of parents need to have limited guardianship. A family member who’s caring for an individual with a severe disability, the doctors rely on them to know what the needs are, particularly someone with limited verbal skills. I don’t know if they’ve thought that through.”

Cochran said he doesn’t think the division understood at first how many families would be affected by the rule change.

“We have sixty families alone we serve that are affected by this rule,” he said. “We’re struggling to help them find alternative solutions.”

He said he understood the state’s contention that it could be a conflict of interest for parents with guardianship to act as paid care providers, but he didn’t see why the agency couldn’t to review individual plans, catch those who were artificially inflating hours and correct the problems.

“I think the state is trying to solve a small problem with a big hammer,” he said.

The grassroots campaign taking shape in opposition to the state’s prohibition against parental guardians acting as paid caregivers features a curious organizational wrinkle: If the array of housing, employment, community support, case-management and referral services offered by Arc of North Carolina has blunted the organization’s advocacy message, its Greensboro chapter has exhibited no such constraints.

In fact, Arc of Greensboro – itself a service provider – convened and facilitated the Dec. 15 organizing meeting at St. Andrews Episcopal Church.

Arc of Greensboro’s director of community services, Carrie Klees, expresses regret to two state lawmakers, both of whom show up late for the meeting, because they missed hearing the parents’ stories of personal and familial hardship.

One of them, Rep. Maggie Jeffus, tells the parents: “All of the Guilford legislative delegation is behind you,” and adds that she believes the state is getting a good return on its investment from parents who act as paid caregivers.

Sen. Katie Dorsett’s presentation hits some rough patches.

She begins by saying, “What we hear from people is that this is a federal thing that was handed down to us.”

“No,” Mary Short protests from the back of the room. “Make them tell the truth.”

Dorsett continues: “I am now on the developmentally disabled committee. We will ask the questions and try to see what we can do. That’s about as far as I can go…. We’ve gotten some very mixed messages.”

Klees finds herself lecturing Dorsett.

“The biggest thing we think is misleading is [the claim that] when the waiver went into effect the budgets went sky high. It’s not true in Guilford County…. It’s been a frustration that the North Carolina Arc has not taken leadership in this. We’re forming a coalition and we’re going to be meeting next month.”

In the coming weeks Arc of Greensboro will be lobbying its statewide counterpart to join them in campaigning against the rule change, with mixed results.

We’ve been in fairly constant contact with Arc of Greensboro,” Arc of North Carolina’s Richard said. “We’re trying to take into consideration the issues that they’ve brought forward.”

On Dec. 20, the same day the division announced it would delay implementation of the rule change, Arc of North Carolina published a position paper reaffirming “its commitment to families to receive family dollar supports to provide care for their children at home.”

While stating that “the policy adopted in Implementation Update #19 is generally consistent with the values and beliefs of our board of directors,” the position paper calls for an exception “of the prohibition against guardian providers if needed” – a modification that would essentially neuter the rule change.

With an additional two months to organize, opponents of the rule change will likely find themselves locked in an argument with the Division of Mental Health over the question of waste and fraud in the CAP-MRDD program.

“We have seen a significant increase in the number of plans over $85,000,” said Vivian Leon, the division’s mental health programmer, in a Jan. 2 interview. “Many times it’s around family members as paid caregivers.” She added: “The policy that was in place prior to this new technical amendment was not adequate. There was often no justification as to why the family member or the guardian had to be the caregiver.”

John Ansbro, executive director of Arc of Greensboro, said on the same day that he sees no evidence of the cost of family care plans ballooning in his organization’s service area. A tenth of the families for whom Arc of Greensboro serves as case manager fall under the CAP-MRDD waiver.

“We’re just a tiny sampling, but we case-manage eighty clients and eight of those are under the CAP-MRDD waiver,” he said. “The highest budget we have is seventy thousand dollars. The other point that is being made is the growth, that there was a significant jump. The two cases where [we had] increases of ten thousand dollars there were specific reasons. And then there were cases of costs going down.”

Ansbro added that the rule change strikes him as discriminatory.

“Clearly single parents, which in most cases are single women, are not getting the same alternatives that a married couple is, because with a married couple one of them can be the guardian and the other one can be the paid caregiver,” he said. “A single parent, unless there’s another significant relative who’s trustworthy living nearby, has to be the guardian and paid caregiver. I’m not an attorney, but I think someone might look at that and say, ‘Hey wait a minute.'”

He added: “They’re jumping to conclusions. This whole [mental health] reform was supposed to reduce costs and it hasn’t. And now it seems like they’re trying to scramble around and find scapegoats.”

It would be hard for any agency official to withstand the public outcry if they acknowledged that they were cutting services to reduce federal spending, but Johns, the lawyer who advocates for the mentally retarded and the elderly, sees that as a philosophical current beneath this rule change handed down by a Democratic administration in Raleigh that might be responding to the limitations on federal funding controlled by a Republican administration in Washington.

“The real agenda is on the part of the people who are directing us that way is the breakdown of the social programs of our society,” Johns said. “The neoconservatives would be very pleased to see the dismantling of Medicare and Medicaid. It seems like the [state] Secretary of Health and Human Services has some kind of perception that the denial of care-giving benefits to parents will somehow save the state of North Carolina money.”

When President Bush signed the federal Deficit Reduction Act in February 2006, he promised that it would reduce the growth in Medicaid spending by almost $5 billion. “The bill I sign today is straightforward,” he said. “By setting priorities and making sure tax dollars are wisely spent, America can be compassionate and responsible at the same time.”

Then in the next breath Johns rebutted his own argument, based on the assumption that parents should in theory be more cost-efficient service providers than private companies.

“It seems like the payment to parents could be less because the cost to a vendor has a lot of extra hooks in it,” he said. “How can [services by private companies] not be more? They’ve got to fix the costs so it creates a profit and covers administrative overhead.”

Those who are in a position to know deny both federal pressure to reduce Medicaid costs and influence by private healthcare companies doing business in North Carolina to steer direct-care work to themselves.

Leon said that to her knowledge the decision to prohibit parental guardians from acting as paid caregivers was not prompted by any expression of concern from the Centers for Medicare and Medicaid Services.

And Steve Smith, the franchise president of Interim Healthcare of Eastern Carolina and government affairs committee member for the Association for Home and Hospice Care lobbying organization said he was aware of no industry efforts to secure the rule change.

“We had absolutely nothing to do with that,” he said. “I read about it in the newspaper. I was almost as surprised to hear about that as you probably were.”

The association’s senior vice president, Sherry Thomas, said she also read about the rule change in a newspaper.

In a Jan. 3 interview Leon disclosed that the Division of Mental Health was reconsidering the rule change.

“The purpose of the postponement is to give consumers and family members time to make an adjustment,” she said. “It’s also intended to give us time to gather input so we can determine whether any modification should be made.”

While reiterating the division’s position that there’s an inherent conflict of interest parental guardians act as paid caregivers, Leon allowed that some exceptions would be acceptable.

“If there are extraordinary circumstances, meaning intense medical needs, and the parent is also someone who has specialized training around that type of medical condition,” she said, “then care can be provided by family members.”

She added that the CAP-MRDD waiver is a finite resource that has to be distributed fairly.

“The Division of Mental Health, we have a responsibility to ensure that all our citizens receive needed support to keep them in the community,” she said. “It’s important to note that there are thousands, or if not thousands, a great number of individuals that are in need of waiver services, but due to budget limitations and also due to the limitations that [the Centers for Medicare and Medicaid] puts on the division, they’re not able to access those services.”

Susan Lones of Archdale, for one, does not see how it would be possible for her and her husband Larry to give up their combined 70 hours of paid care to her son, Bobby. As a 25-year-old man with cerebral palsy, Bobby has multiple and interrelated health problems, including a lung that collapsed two years ago. His weight has been erratic. It dropped to 27 pounds when he was a teenager, and his mother decided to hook him up to a feeding tube.

Bobby had accompanied his mother and stepfather to the Dec. 15 meeting at St. Andrews Episcopal Church. He had reclined in a homemade wheelchair that Larry fashioned for him from a van seat and welded pipes. But now two weeks later he’s running a fever of 102 degrees stemming from an asthma attack that kept him awake until 7 a.m., so his mother decides to keep him in bed the next day.

Susan and Larry make it clear that the three of them enjoy their time together as a family. They make periodic trips to Garden City, SC, a beach resort south of Myrtle Beach where Bobby enjoys watching people sing karaoke.

“That’s our outlet, that’s our respite,” Susan says, adding, “The worse they sing the better [Bobby] likes it.”

The $70,000 the couple receives covers their needs, but Susan doesn’t see it as an extravagant amount.

“We use his money for his living expenses,” she says. “Everyday life. We buy gas we to go down to Durham a lot for his appointments. Personal daily care. It’s mostly everyday living like you would pay for with a regular paycheck.”

Alena Hammonds is Bobby’s girlfriend. They used to see each other every day in the Gateway program when they were school-aged. They went to prom together. Now they don’t see each other much because Bobby’s health has deteriorated too badly for him to attend the day program with Alena. The last time they were together was at the Christmas party hosted by Community Support Services at the Greensboro Coliseum Special Events Center.

Ironically, Bobby’s heavy enough now that only Larry can lift him. Larry gave up his construction job, got trained in respiratory therapy and earned a certified nursing assistant license so he could take care of Bobby. If the state carries out its threat to stop Susan from working as a paid care provider it will fall on her to find another job because she is Bobby’s legal guardian.

“The only way I can figure it is I would go to work 11 p.m. to 7 a.m. at a curb market or a motel while he’s asleep,” she says. “When it happens, that’s when we’re going to have to say, ‘What are we going to do?’ We’re worried sick about it.”

To comment on this story, e-mail Jordan Green at