Parents With Disabilities Face Medicare Rules That Exclude Parental Assistance

Crystal Evans wants to wash her daughter’s hair. The problem is, she can’t use her home’s shower. Medicaid approved a bathroom modification in January 2020, but it didn’t include the shower portion, Evans said.

“The physical layout is a barrier. I can’t help Sophie without flooding the bathroom,” she said. “It’s really awkward and dangerous for me. I fall in there a lot.”

Evans, a single mother, has a neuromuscular impairment. Evans is dependent on a power chair and ventilator to get around her home. Medicaid pays for a personal care assistant to come to her home every day, to help her with “activities of daily living” — preparing food for herself, for example. However, federal and state law does not cover assistance with parenting.

“Technically, [personal care assistants]You are not allowed or expected to do anything for your children. If they do, they’re doing you a favor,” Evans said. “They’ll leave dishes they think I didn’t eat out of. They won’t help change her. They’ll only wash my laundry. My washer and dryer are located downstairs. How am I supposed to wash my daughter’s clothes?”

Technically, her personal care assistants are not allowed to assist her with parenting tasks. “It’s like [home care agencies] don’t want the child to exist,” Evans said.

According to a 2012 reportAccording to the National Council on Disability (NCD), an estimated 4.1 million parents have a disability in the United States.

“People don’t really expect disabled people to be parents,” said Robyn Powell, a law professor at Stetson University. Powell is the principal author and one of America’s foremost experts on parents living with disabilities.

It isn’t clear how many people using home care services have parenting responsibilities — that data has not been collected. But Powell says that Evans’ situation is not at all uncommon. If the government pays for your personal care assistant, the assistant can’t help with tasks for anyone else in the house — and that includes parenting duties. This means that parents may go to extremes in order to care for their child.

“I’ve heard of parents that had their [personal care assistant]The parent would make a sandwich for their child and then take it home. They’d skip lunch every day to feed their child. It’s absurd to me,” Powell said.

Powell says that many parents with disabilities fear speaking out about their struggles to parent without help, for fear of being judged unfit parents. These fears are not uncommon. According to the CDC, parents with disabilities are much more likely than the general population to lose their children to child welfare. National Research Center for Parents with Disabilities.

According to Powell, solving the problem of assistance for parents with disabilities would be relatively simple: “All you have to do is add parenting as an instrumental activity of daily living [under the law].”

The National Council on Disability made a recommendation for the Centers for Medicare and Medicaid Services that personal care assistants be allowed to do more in 2012. This independent federal agency was created to advise Congress and the president on disability issues. The recommendation was not adopted.

The move is “simple” because it is a regulatory change and would circumvent Congress and the legislative process, Powell said. “It’s as simple as anything involving the government is,” Powell conceded. It isn’t clear why the recommendation was never adopted. CMS did not respond in time for publication.

Despite the fact that there has been little movement at the federal level, some states are beginning to accept these recommendations. Minnesota is the first state to address this issue at the state level. In June, the state passed an omnibus bill that included a pilot program. The provision would allow personal care assistants to do “supportive parenting services” like washing a child’s laundry, not just their client’s. The pilot program will start in 2024. Funding research and a stakeholder panel will help evaluate the state’s issue.

Nikki Villavicencio, a Maplewood, Minnesota resident, is the author. city councilmemberShe was one of many parents with disabilities who supported the pilot program. She and her partner, who are both disabled, use power wheelchairs for mobility. Alexandria, Alexandria’s 8-year-old daughter, is relatively independent. But, Alexandria was less independent as a baby. Villavicencio had to make due with her partner. Villavicencio was unable to move her arms so she learned how to change diapers using her feet.

Still Villavicencio and her partner needed more help and weren’t getting it. “The agency says [to staff], ‘You cannot hand the child a plate, you cannot cut up her food, you cannot do her laundry.’” she recalled.

They ended up relying upon a complex and sometimes unpredictable web of informal support. “My partner and I are very strong advocates and know how to speak up for ourselves. We’re highly engaged in our community. But not every disabled person has that,” Villavicencio said.

Villavicencio, despite the fact that the pilot program is still in development, is extremely proud of the new law. “It’s going to set a precedent that parenting with a disability is a completely normal thing,” she told The 19th.

Villavicencio stressed the importance accessibility beyond homecare. It is possible to make small adjustments to your physical space that can make a big difference in independence. While Minnesota has a preexisting program to adapt people’s homes, it can be difficult to access. Villavicencio said it took them four years to make the necessary modifications to their home to be able to cook food for their daughter and self without the help of anyone.

“We have an accessible kitchen now. So when we don’t have care, we can at least feed ourselves,” she explained.

“It has nothing to do with whether a disabled person can or cannot parent,” Villavicencio continued. “Instead, it has to do with the environment that they’re in.”