Parents With Disabilities Face Medicare Rules That Exclude Parental Assistance by 19thnews
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.
“Technically, [personal care assistants] are not supposed to do anything for your child. 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. The washer and dryer in my house are downstairs. How am I supposed to wash my daughter’s clothes?”
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. That means sometimes parents will go to extremes to make sure their child is cared for.
A recommendation for the Centers for Medicare and Medicaid Services to expand what personal care assistants can do was made in 2012 by the National Council on Disability, an independent federal agency meant to advise the president and Congress on disability issues. However, the recommendation has not been adopted.
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.
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