Families of children with disabilities face a new challenge — Medicaid cutbacks 

The parent trap

One twin squirmed. The other was strangely still.

Jim and Rosi Cross had noticed the difference between their two boys since bringing them home from the hospital. But when a doctor told them that 4-month-old Brandon had cerebral palsy, it was still shocking.

Brandon would never walk. He wouldn't learn at the same rate as his brother. And he would always need help eating and getting to the bathroom. Rosi's plans of returning to work were dashed.

That was 15 years ago. Since then, Jim says, "We've never had anyone in to care for him. [Rosi] has never had a break."

The Crosses aren't rich, and as Brandon aged, his special needs began to strain the family budget. Colorado Medicaid money began filling the gap.

Now, however, recent changes to state Medicaid are leading to cutbacks that are hurting the Crosses and other families with children who have disabilities. For many, the cuts couldn't come at a worse time. Some families are even facing giving up their children because they can no longer support them.

The Crosses have no such plans for Brandon, but they are struggling. During the recession, Jim lost his job at a car dealership, and the family lost their home in the Black Forest area. The Crosses moved to Peyton, where they rent a red house on a stretch of short grass prairie. Jim took a job as an over-the-road truck driver. Over the course of a month and a half, he's lucky to get three days at home.

Changing the system

Brandon is, in many ways, an average child.

He loves Harry Potter, video games and jokes, and he has a tendency to dodge responsibilities he doesn't like. (In his case, physical therapy ranks high.) He spends his time at school, or hanging out at home with his mom and siblings.

Before the 1980s, quadriplegic children like Brandon usually grew up in an institution. It was thought they were too big a burden for families to handle.

These days, families are encouraged to keep such kids in the home, and to seek Medicaid assistance. The state offers help to low-income families, of course, but also has a special program for somewhat higher-income families. Together, the programs help about 4,400 kids statewide.

Medicaid awards a certain number of hours with a home-visiting certified nursing assistant or a nurse, based on need. CNAs are hired from approved providers, but often a family member simply gets the training, goes to work for a home health care agency, and serves his or her own family. Medicaid pays the agency, and the agency pays the family member.

That's what Rosi's done. Though Medicaid pays as much as $33.21 per hour for CNA services, she receives $12 an hour to care for her son.

She used to get paid for seven hours of work each weekday and 11 hours a day on the weekends, based on an evaluation of Brandon's needs. But now her benefits are being slowly reduced. By May she'll be locked in at a new reimbursement rate — four hours a day, every day.

Here's why: Colorado Department of Health Care Policy and Financing representatives say they have replaced subjective evaluation methods for determining hours with a new, standardized "Pediatric Home Assessment Tool." That tool, a questionnaire about the specific needs of a child and the ability of the family to meet those needs, clearly defines the responsibilities of a parent or adult in the home, versus a CNA or nurse. Points are assessed for each question, and at-home nursing hours are then based on total points, though appeals are possible.

The tool is needed, says Rachel Reiter, department spokesperson, because Medicaid can only pay for treatments and services that are a "medical necessity" — which only a trained professional can provide. With few exceptions, Reiter explains, "Federal requirements for home health services do not allow for reimbursement for non-professional or 'unskilled' services."

The state spent years developing the tool, and formed a committee of experts to review it. The new system has saved the state money, though representatives won't say how much and insist that changes weren't based on financial interests.

Less than two months into the change, however, families say the system isn't reasonable. For instance, just because a second adult lives in the house, that doesn't mean he or she can care for the child, as the tool assumes. Take the Crosses.

"I'm married, even though my husband is absent," notes Rosi. "You lose points on [the marriage]. You lose points, too, because I don't have children under 10. ...

"[Brandon] is not incontinent ... and he lost lots of points on this. And I asked my nurse, too, 'What is harder? To change somebody's diaper, or [get a 15-year-old boy] to the bathroom?'"

Experts add another critique, saying the new assessment tool was never piloted before it was fully implemented. (Medicaid representatives note that there was a pilot, but it didn't attract enough participation to be reliable.)

"It's impacting kids with significant physical disabilities, and I don't think the state anticipated that," says Dr. Patricia Yeager, chief executive officer of the Independence Center, a local nonprofit that advocates for those with disabilities. "... They've interpreted [medical necessity] in a very narrow way. And so I do think the state is trying to save money."

'Significant hardship'

Kids with significant disabilities generally can't be watched by a regular day care provider or babysitter, and the state doesn't supply special day care. Thus, many parents today are left with two options: Stay at home with their child — and try to get by without a job and reduced state support — or surrender their child to the state.

Beyond being heartbreaking, the latter option can be logistically daunting, since few foster homes take kids with disabilities. Nevertheless, Yeager says, "We've got a couple of parents saying, 'I guess I'm going to relinquish my child.' And the state's not ready for that."

Yeager, whose organization receives and manages some Medicaid funding, says many of her clients have seen their paid hours cut in half, including the single mother of an older child with no arms or legs, and the grandmother of a child who can only blink and breathe on her own.

The state did need a new system for awarding hours, Yeager says, because the federal government has requirements, and a standardized system cuts back on Medicaid fraud. But she thinks the questionnaire needs to be reworked. In fact, a meeting between advocates and state employees is planned for April, and many hope the state will agree to tweaks.

Elisabeth Arenales, health program director for the Colorado Center on Law and Policy, is among them.

"Disability advocates were very clear with the Department of Health Care Policy and Financing before the new Pediatric Assessment Tool was put into use, that it would create significant hardship for a wide range of children with disabilities and their families," she writes in an e-mail to the Independent. "They were right."

Representatives from the state say they remain open to suggestions.

Meanwhile, the Independence Center has already filed an initial appeal on behalf of 26 client families that have seen hours cut. Medicaid has denied every request on first review. Some clients have pursued the issue further, having family doctors contact Medicaid on their behalf. If all else fails, families can take their case to an administrative law judge.

The Crosses say they, too, are considering their options.

"Gas prices [are] going up, food going up, utilities going up, health insurance going up," Jim says. "We see some bad times coming here down the road."


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