Family of girl with autism on waitlist to get financial relief for expensive care

A three-year-old girl recently diagnosed with autism may have to wait a decade to get medical benefits for the much-needed and expensive care she needs.

[9 Investigates: Children with autism being denied therapy, leaving families desperate]

Rilyn Luhrs applied for the North Carolina Innovations Waiver, which helps families by providing medical benefits.

“My daughter, she’s an angel,” her father, Erik Luhrs, said.

Rilyn’s parents say the best care plan for her is at home and involves expensive therapy.

“We believe that it would be at home,” Luhrs said. “We would do schooling not full-time. We believe services like ABA therapy, speech, occupational and physical therapy, in conjunction with us staying home, is the most beneficial for us long-term.”

Luhrs has a construction job, and said providing Rilyn with that type of care costs thousands of dollars in insurance bills; so he applied for the state waiver.

“They would cover the treatment she currently has that has been proven beneficial for her to be a successful adult,” Luhrs said. “What we have found out is there is a 10-year waitlist. I guess she’ll be accepted when she’s 10 years old, but it’s gonna be painful until then if that’s the case.”

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The North Carolina Department of Health and Human Services emailed Channel 9 reporter Tina Terry Friday a message that read, in part,

“Yes, the current average length of time for the waiting list is 10 years, though some individuals receive a waiver slot earlier and there are various reasons for this. The waiver is for both children and adults, who may remain on the waiver for an extended period of time, so there is little turnover to be offered to the others waiting. New slots have not occurred in sufficient numbers to keep up with demand for the waiver.”

For now, Luhrs is left searching for alternatives to get his daughter the help she needs.

“Crowdfunding, looking for grants, whatever it takes to make sure our daughter doesn’t have to stop therapy,” the father said.

Lurhs said there is no waitlist in South Carolina, but Channel 9 couldn’t confirm that Friday.

North Carolina health officials say there are other programs that could help families like the Luhrs.

(Watch the video below: 9 Investigates: Children with autism being denied therapy, leaving families desperate)

9 Investigates: Children with autism being denied therapy, leaving families desperate

Information from NCDHHS:

“The NC Innovations Waiver is a Federally approved 1915 C Medicaid Home and Community-Based Services Waiver designed to meet the needs of Individuals with Intellectual or Development Disabilities who prefer to get long-term care services and supports in their home or community, rather than in an institutional setting. Individuals have the opportunity to sign onto the Innovation Waiver’s waiting list years in advance.

“The current average length of time for the waiting list is 10 years, though some individuals receive a waiver slot earlier and there are various reasons for this. The waiver is for both children and adults who may remain on the waiver for an extended period of time, so there is little turnover to be offered to the others waiting.

“New slots have not occurred in sufficient numbers to keep up with demand for the waiver. Waiver services are administered by a local management entity/managed care organization (LME/MCO), which facilitate services and oversees a network of community-based service providers. A variety of factors, including the amount of the waiver (if the waiver is lower in cost, more slots can be offered), historical funding and population increases can have an impact on the general duration of time someone may be on a waiting list.”

“When the state budget was finalized in 2021, the General Assembly allocated 1,000 new slots for the Innovations Waiver, which are pending approval at CMS.

“NCDHHS offers other services such as State Plan, (b)(3) and state-funded. Currently, we are developing an (i) option to replace our (b)(3) services which will allow more access to Supported Employment and Respite (adding SUD). Individuals with Autism Spectrum Disorder may access our Research Based Treatment for Autism Spectrum Disorders service, which was recently approved by CMS to be provided to adults (previously only available to under 21).”

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