Government regulations can hurt parents with disabilities. Here’s how we fix that, says advocate.

SALT LAKE CITY — When a disabled parent needs someone to help them fix a sandwich for their child or change a dirty diaper, many times their personal care assistant from Medicare or Medicaid is legally barred from helping them. What can you do when federal regulations get in the way of helping parents with disabilities?

Dr. Robyn Powell of Stetson University College of Law in Florida joined Inside Sources with Boyd Matheson to discuss ways to change short-sighted regulations and help affected families.

Dr. Powell herself is disabled. As a professor, she teaches Disability Law, Torts and Public Health Law.

People with disabilities are parents, too

Powell said, often when we think about disabled people, we tend to think of them as children or as seniors, not as parents.

Systems designed to assist people with disabilities operate under the presumption that they would not have families.

“So we have these archaic systems in place that really never expected people with disabilities to become parents,” Powell said.

Medicaid doesn’t cover basic parenting for disabled people, and that needs to change, she added.

“So if a person with disabilities needs any type of assistance with caring for their child, even things like doing their child’s laundry, they’re not permitted to have their personal assistant help them with that,” Powell said.

A person’s disability can impact their ability to parent or to maintain their household for their children, Boyd pointed out, which can lead to a referral to the state’s child-welfare agency.

Can this be fixed?

Powell said step one is changing the Medicaid rules to allow personal assistants to help disabled people with parental duties. 

“It is actually just a regulatory change that’s needed. So if we had the political will, I think this is something that could be done,” she said.

Efficient and effective solutions for parents with disabilities

There are states that are trying to use state funding to permit personal assistants to help parents with disabilities with parenting tasks.

“One of the main reasons is because we also know that disabled parents are more likely to be referred to the child-welfare system, which is incredibly expensive,” Powell said.

Sparing the cost (and trauma) of referring a family to the state’s child-welfare system is in a state’s interests financially, she said.

Don’t need Congress to accomplish the change

Powell said this change to the regulations that would allow coverage for parental assistance could be accomplished through the Center for Medicaid and Medicare Services, and not involve Congress.

The help personal assistants would provide fall into two categories, Powell said.

The first is daily living activities and things related to personal care such as dressing, showering and anything personal. 

The second is called instrumental activities of daily living (IADL), such as shopping, food preparation, cleaning and other things that people with disabilities need assistance with.

Powell suggested adding parenting to the IADL list of activities.

“I want to emphasize this is not free babysitting. . . It would mean that the personal care assistant could offer physical assistance to the disabled parents in helping to perform their parent tasks,” Powell said.

 

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