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A families' fight to get services for their daughter fall short with MDH denial

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BALTIMORE — On the home page of the Developmental Disabilities Administration(DDA) website, it says "the administration works together with children and adults who have intellectual and developmental disabilities to get support and resources."

Getting those resources isn't always easy, Ryan Dorsey found that out the hard way when he tried to get more services for his daughter Natalie, a five-year-old with cerebral palsy who also deals with epilepsy.

"She has gotten to a point where she is falling under that extraordinary care category," said Dorsey.

She's not like most five-year-old girls, who might be able to occupy themselves for a few minutes.

"You need to be with her at all times, just to ensure her safety and to make sure that she's ok," said Dorsey.

It's why Dorsey and his wife applied for more services through the state about a year ago.

Wanting to get her care for all waking hours, even getting a delegating nurse from the state to assert the care is needed.

Immediately, there was push back.

"Mainly, we were getting push back in the form of clarifications, multiple clarifications for that plan," said Dorsey.

Each time the family clarified the proposed schedule or the medical information it takes hours of work to get documentation and return it.

"They were, in our opinion, looking to deny it," said Dorsey.

During that process, Natalie got hurt.

"She had a fall, that we suspected from seizure activity and she broke her heel," said Dorsey.

"That was a scary thing for us, you know what I mean, that really just re-enforced for us how much these additional services are needed," said Dorsey.

The family met with DDA, hoping to figure out what they can do to get the plan approved.

"It was referenced at that meeting by the DDA team that there is larger budgetary constraints that are impacting their ability to provide services through the administration," said Dorsey.

The family was told to get multiple legal documents, a power of attorney and even a tertiary guardianship, only to be told they weren't needed.

Despite providing clarifications, getting the legal documents, meeting with the decision makers and having a state nurse show Natalie needs this care, the family was denied.

They appealed, it was denied as well.

They appealed again, only to be met with a chance to settle the dispute.

"It just felt like we were being punished for requesting services for our daughter that she is legally entitled to," said Dorsey.

"Is part of that settlement you won't receive those services," WMAR asked.

"Won't receive those services - no," said Dorsey.

We asked Maryland's Department of Health why someone who has a nurse saying they need the services may be denied. MDH responded saying, "Medicaid waiver services are authorized based on the participant’s assessed needs, following published guidance for service authorization. A recommendation from a nurse employed by the participant is only one element, among a large number of other elements, which could result in authorization for services. The DDA must follow all published rules and guidance, and this process does not always result in service authorizations that match family member's expectations.

We also asked if the state budget could play an impact on someone being approved or denied services to which MDH said, "DDA service authorizations for individuals are not based on State budgetary considerations, they are based on assessed need."