The cuts have been so brutal that some families have been forced to consider giving up their child.
Everyone agrees: This wasn't supposed to happen when a new "tool" was designed to help Medicaid determine how many hours a severely disabled child should be allotted for at-home nursing care. The tool was intended to standardize the system, prevent fraud, and bring the state more in line with federal guidelines.
But with hundreds of kids affected and families reeling from the financial hit (see "The parent trap," News, March 27), what should be done now is up for debate.
State officials say they plan to rework the "Pediatric Home Assessment Tool" — basically a checklist meant to determine how much professional assistance a kid needs to do things like bathe or use the bathroom. But advocates for people with disabilities argue the state should simply toss the tool until it can create something better.
They say it's unfair to ask families to suffer until the checklist can be fixed, especially since it was never properly piloted — which might have pointed out some of the oversights in advance. (For instance, it does not consider whether a child is missing limbs.) Worse, they say many families weren't properly informed of their option to appeal until it was too late.
"The only thing that I think is acceptable at this point — because this is so flawed — is to restore everyone's hours to what they were while they work this out, and to use legitimate research and data to make these decisions and to do a legitimate testing period," says Julie Reiskin, executive director of the Denver-based Colorado Cross-Disability Coalition. "... I mean, this is like experimenting with people. It's just not ethical; you can't do that."
The Colorado Cross-Disability Coalition and Colorado Springs' Independence Center are among the advocacy organizations that are helping families appeal cuts to their allotment.
An estimated 300 families have been affected so far, but state officials expect that about 30 percent of the approximately 4,400 kids will see cuts. For some families, that means fewer hours with a nurse who visits the home. For others, it means a smaller paycheck for mom or dad, as it's common for a parent to train as a certified nursing assistant for their child.
Both the state Medicaid director, Suzanne Brennan, and the state's Medical Services Board have expressed dismay that the tool may be hurting families who desperately need help. In an e-mail to the Independent, however, Brennan says she believes many cuts are justifiable, and that some families who need additional help might need to look at other Medicaid programs, even those with wait lists.
"We need a solution that helps us comply with federal regulations while meeting the needs of our clients," she writes.
Brennan has directed her staff and vendors to review cases where cuts were made; to work with families to find other programs that meet their needs; and to assist them with appeals. She is also increasing training on proper use of the tool by her staff. The tool itself will be reassessed by a newly hired clinician and "pediatric experts."
All of this is "good, but ... not really good enough," says Anita Pope, director of nursing for the Independence Center. "We're talking about taking this to the [state] Legislature."