Medicaid's new assessment for disabled children could hinder instead of help

Medicaid's new assessment for disabled children could hinder instead of help
Anthony Camera
Susan Hogarth at home with her son, Jake.

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."

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My Voice Nation Help

It's the same in the UK - policies are changing, people are being reassessed and missing out on the stuff they need - like bathing equipment, stair lifts, etc. 


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. 

 Why can't Medicaid pay her directly?  Why does she have to be hired by an agency?  Does the agency profit off Medicaid  by acting as a go between?  



I don't give a flying fuck about your children. I don't care who they are, where they are, how old they are, or what they are doing. Want me to see pictures of your kids or grandkids? Sure, but hold on while I turn on the paper shredder.

What's that? You're selling cookies/candy/raffles/ornaments/prizes/trinkets so little Johnny and Sarah Jane can waste an afternoon at Disneyland? Sure I'll take some candy -- so long as I can smash it in your motherfucking face and retrieve it from your crusty rectum. This is an office where I do important work -- not a goddamn bazaar to peddle the wares of your snotnosed offspring.

I don't care how smart you think your kids are. No, your children aren't geniuses. You'll be lucky if your brats move out of your hovel at age 30 -- after they've climbed the ladder to success making change at a gas station.

You love your children? Good -- tell it to someone who gives a shit.

Keep your motherfucking brats out of movie theaters and restaurants. Seriously, no one wants the living incarnation of your seed disturbing our shows and meals, spreading viruses and bacteria with every goddamn thing they touch. You need a night out? Fine -- hire someone else's fucking brat to watch yours, you cheap piece of filth.

No, I don't want to pay more in taxes to send your pathetic pieces of dopeshit to school. Oh, you want "more resources"? Better "facilities"? Better student-teacher "ratios"? Well la-de-fucking-da: why don't you FUCKING PAY FOR IT. If you're not catching my drift, let me make it clear: I don't want to throw my money away educating your third-rate douchebag of a kid so he or she can wash my car on the weekend. You gave birth to it, you pay for it.

Your children are our future? Fuck the future, fuck your kids, and fuck you.


Assholio... how the fuck can she pay for it without childcare without the income? It is cheaper for her to care for her own child than it is to heartlessly place them in a God damn facility. By the way... caring for the disabled is not effortless it is damn hard and my child is so disabled unfortunately he would never get to bother you with the sale of candy. I don't want more resources I want a cheaper better one you DUMBASS!


@Assholio I'm sorry that your parents didn't love you. It wasn't your fault. I hope that you find a job soon, but really, don't share these opinions in public. It will only compound your problems. I wish I could give you a big hug. Peace

BackOffImStarving topcommenter

@Assholio"Anger management training educates people to deal with and experience their anger in healthy ways, and many people benefit from anger management courses. Anger management techniques for mentally-ill patients are especially important because mental illness often causes extremely high levels of stress, and people with mental disorders may have difficulty expressing emotions and relating to others in healthy ways."