AHCA Tries to Reassure Parents on Private Duty Nursing Care

By Mark Sherman, LRP Publications

Since September, Florida officials have been taking various steps in response to charges by the Justice Department that they are violating the ADA by letting certain children with disabilities live in nursing homes when they could be living at home.

The charges, In re: United States’ Investigation of the State of Florida’s Service System for Children with Disabilities Who Have Medically Complex Conditions, 112 LRP 44774 (DOJ 09/04/12), mirror the allegations in a federal class action lawsuit, T.H. et al. v. Dudek et al.

On Dec. 11, for example, the Agency for Health Care Administration directed field staff to appoint a care coordinator for each child in a nursing home, with the goal of facilitating a transition back to the community.

Now, the agency has changed its policy on parental responsibility for participating in a child’s home-based care, and in particular for performing tasks that go beyond helping children with the activities of daily living, such as bathing and dressing, and the “instrumental” activities of daily living, such as shopping and transportation.

Under the previous policy, parents were expected to participate “to the fullest extent possible” in performing these more-advanced tasks, thus reducing or eliminating the need for private duty nursing services (PDN).

That is no longer the standard, according to an alert dated Feb. 4.

“If the parents or legal guardians are willing and capable of providing more than activities of daily living (ADL) and instrumental activities of daily living (IADL) care, PDN can [nonetheless] be authorized to supplement the care provided by those parents or legal guardians,” it said.

The change is significant, according to Debra Dowds, executive director of the Florida Developmental Disabilities Council.

“This is a big deal and a very good deal,” she said of the alert. “If the parents can get more nursing services in [the home], we think that will help in making them feel more comfortable in caring for their children and in turn the children staying in the home.”

Correcting a misimpression

Like other Medicaid services, private duty nursing must be medically necessary, meaning it is “not primarily intended for the convenience of the recipient, the recipient’s caretaker, or the provider,” according to the state’s Home Health Services Coverage and Limitations Handbook.

Thus, the onus is on parents to do their part in caring for their children, given proper training, according to the handbook.

“Private duty nursing reimbursed by the Medicaid program are to supplement the care provided by the parent, legal guardian, or caregiver,” it says.

However, it is not the state’s policy to require parents to perform services they are not qualified to render, according to state Medicaid chief Justin Senior.

“There was a lot of concern out there that we were expecting parents to provide actual, professional, clinical skills, which we’ve never done,” he said in an interview. “Parents only have to do things that they’re clearly capable of doing.”

Thus, the alert is considered a clarification, not a change in the agency’s stance, he said.

“Our policies were being described in the media and at public meetings, and we were not hearing what we felt was an accurate description of what we were asking parents to do,” he said.

Watching the budget

Matthew Dietz, the attorney in the class action lawsuit, is encouraged by the alert.

“If parents are not required to participate in activities other than ADL and IADL, then it would satisfy many of our demands with regards to the kids at risk of institutionalization,” he said in an email.

But the full import of the alert won’t be clear until the state issues new regulations, he said.

For example, he said, the alert says private duty nursing services can be authorized to “supplement” the care provided by parents and legal guardians.

“It would appear to me that parents would supplement PDN care, and not PDN care supplementing the parents’ care,” he said.

In the meantime, he is concerned about the state’s willingness to fund the services to which parents will now supposedly have greater access.

Under Gov. Rick Scott’s budget for 2013-14, for example, private duty nursing services would receive $145 million.

That figure, which includes federal matching funds, represents a cut of $26.7 million compared to 2012-13.

“It does not seem feasible to estimate a $26.7 million reduction in PDN care while at the same time promising increased services to parents,” Dietz said.

Mark W. Sherman, a Washington bureau correspondent, covers special education issues for LRP Publications. Copyright 2013 © LRP Publications.

Tags: , , , , , ,

%d bloggers like this: