Parents of children with disabilities and their advocates are frustrated by a new questionnaire being used by the state to determine a child's home-health-care needs. The survey has resulted in hundreds of families being paid less to care for their children, many of whom need constant supervision.
Wendy Rutter's fourteen-year-old daughter has a seizure disorder and brain damage. Because of her disability, the teenager can't tell you her name, age or phone number. There are scarier ramifications, too. She doesn't understand that crossing a busy street is dangerous, and she's liable to touch a hot stove without warning. "She needs someone monitoring her 24/7," Rutter says.
So Rutter trained as a certified nursing assistant, or CNA, and was hired by a home-health agency that pays her with Medicaid dollars to care for her daughter. This program is meant to keep kids with disabilities out of state-run homes, which are much more expensive. But Colorado officials say it wasn't managed effectively in the past, and the state and federal dollars used to pay parent CNAs were not tracked well. To remedy that, the state has introduced a questionnaire called the Pediatric Assessment Tool, which is designed to measure a child's needs and assign a point score that correlates to how much care the child is eligible for.
Before the new questionnaire, Rutter was paid to care for her daughter eight and a half hours a day. Now that's been reduced to six, which is a big hit to her income and possibly to her daughter's health. "I'm going to have to seek employment elsewhere," Rutter says. But she worries that the cost of paying someone to care for her daughter while she's at work will consume whatever extra money she makes. "How do I...make enough to pay somebody CNA pay? It's a catch-22."
And Rutter has it good compared to other parents. Allison Sedlacek's daily hours have been cut in half, from eight to four. Her twelve-year-old daughter, Liza, has epilepsy and developmental delays, among other disabilities. She needs help dressing, eating and going to the bathroom. Liza is also prone to having seizures in the bathtub, during which she must be hoisted out of the water to keep her from drowning. Once the seizure is over, Sedlacek must wash away her daughter's vomit and start the bath anew. Taking care of Liza is not a four-hour job, she says: "Even if I get eight hours a day, I'm caring for her the other sixteen."
Both Rutter and Sedlacek blame the reductions in part on the fact that their children can walk on their own and aren't fed primarily through feeding tubes. The Pediatric Assessment Tool gives extra points to children who use equipment such as wheelchairs, feeding tubes, catheters, tracheostomy tubes and ventilators; the program deems the upkeep and monitoring associated with those devices "medically necessary" and therefore within the scope of a CNA's responsibilities. Not within that scope are tasks classified as "unskilled," such as helping a child use the bathroom.
But these parents insist that caring for disabled children who are higher-functioning can be just as intense and challenging as caring for a child who is not. For instance, higher-functioning kids can run away, refuse to do a certain task or hurt themselves and others. Teaching them what's acceptable and what's not can be nearly impossible.
Take Susan Hogarth's seven-year-old son, Jake, for example: Jake has Angelman syndrome, a genetic disorder characterized by developmental delays and seizures but also a happy demeanor. "They see Jake not being disabled enough," says Hogarth, who is new to the CNA program. When Jake was measured using the Pediatric Assessment Tool, he scored only enough points to warrant paying Hogarth to care for him three and a half hours a day. That goes up to four if Jake triggers what Hogarth has nicknamed "Code Brown." Because of frequent accidents, Jake wears a diaper at night. If he wakes up before his mother, he's liable to remove his diaper and play with his feces. "He'll have...put it on the wall, on the shutters, on the comforters lining his bed to keep him contained in there, all over the side rail, all over his feet, all over the carpet," Hogarth says. "He'll have eaten it. It's in his fingernails." Although she's only paid for an extra half-hour after such an episode, Hogarth will have to spend hours giving Jake a bath, scrubbing his fingernails, disinfecting his room and washing his bedding.
"That's a high-functioning kid," she adds. "That's what they'll call it."
While parents recognize that it's their responsibility to care for their children, the CNA program allows them to make a living while doing so. Most daycare programs won't accept children with severe needs, they say, which makes it impossible for them to work outside the home. Working on other jobs from home isn't an option, either, since they usually can't let their children out of their sight. "My choice is to try to find another job that will be accommodating enough to allow me to work part-time," Sedlacek says. "Or I just suck it up and deal with half the salary."
Advocates say they warned state officials that implementing the Pediatric Assessment Tool would result in reductions of allowable hours and thrust families into economic crises. Though the questionnaire was developed over the past year and a half with input from stakeholders, "there's a lot of people who think the stakeholder process just didn't pan out," says Sam Murillo of Family Voices Colorado, an organization that advocates for kids with special health-care needs. "Stakeholders predicted that people would get their hours cut."
They were right. At a meeting last week, staff from the state Department of Health Care Policy and Financing revealed that 30 percent of the participating families found their hours reduced as a result of the Pediatric Assessment Tool; those families represent 300 to 400 kids with disabilities. But as Hogarth and others pointed out, that number doesn't include families like hers, which are new to the CNA program and essentially had their hours reduced from the start.
The meeting marked the third time that department staff had heard from parents upset with the new questionnaire. The most emotional was an April 12 meeting of the state Medical Services Board, which adopts rules for administering Colorado's Medicaid program. While testifying, several parents broke down and cried. "It scares me that if we were to go backwards and start taking these hours away from moms, that she's going to be placed in a home," Ashley Steinbach testified, as her six-year-old daughter, who has cerebral palsy, shrieked "Mama! Mama! Mama!" in the background. "I don't have any other options. I don't have her dad. I don't have other family to help...so, please."
Some boardmembers were sympathetic, calling the situation an "emergency" and asking Suzanne Brennan, the department's Medicaid director, what she and others were doing to fix it. "We need to see what we can do immediately to come up with a solution that makes sense long-term — and this isn't it," said board vice president Michael Stahl.
Brennan explained that the department is being forced to balance serving kids with new instructions from the federal Centers for Medicare and Medicaid Services, which has directed the state to better track the dollars it spends. At a meeting with stakeholders on April 24, Brennan and other staffers laid out a plan for addressing problems with the questionnaire, which include reviewing the cases in which hours have been cut to see if those kids qualify for other programs such as the Children's Extensive Services Medicaid waiver, for which lawmakers included funding to eliminate the wait list in next year's budget. The plan also calls for better training on how to use the questionnaire for those filling it out and hiring a clinician to oversee a revision of the questionnaire to eliminate certain biases, such as giving extra points if a child has recently been hospitalized.
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One of the main problems identified thus far, staff said, is that parents are not submitting explanatory documentation along with the questionnaire, such as notes from their children's doctors, therapists and schools describing their unique needs. Brennan and others said they'll reach out to parents whose hours have been reduced to ask for those documents.
But so far, Brennan has been unwilling to do what advocates and parents want the most: to cease using the questionnaire until it's been revised. "I don't want to be rash," Brennan says. "Yanking the tool is not the right solution.... [It's] better than what we had before, which was unmanaged and varied in what the home-health agencies were doing."
That may be true, advocates say, but families shouldn't have to suffer the consequences. "Their obligation is to do no harm," Murillo says, "but there's harm happening right now."