‘A constant battle’: Families of relatives with special needs demand better service

CHARLOTTE — Many people who have relatives with special needs are demanding better service, telling Action 9 that it can be too much of a fight to get the money or services their loved ones need.

There is a program called the Innovations Waiver that allows you or a healthcare worker to take care of your relative at home instead of that person going to an institution.

Chelley Philippe is on the waiver so she lives at home, not in a facility, and healthcare workers come to the house.

“She puts a smile on my face all the time ... She has made so [much] progress. Her language is improving. She’s understanding more,” her mother Marie Philippe said. “She can do … some things independently now. It’s tremendous.”

It’s tremendous, but expensive. Philippe says she usually asks for more money than the formula allows but submits lots of proof and has even invited decision-makers to come see for themselves.

“It’s still a constant battle with them,” she said. It’s a battle that has led to appeals, mediation, court hearings and, she says, stress.

“What do you think other parents are going through?” she said. Many of them say the same thing or something similar. A mother worried about the wait list even started a petition to increase funding for the waiver. It landed more than 260 signatures in less than a week.

As for Chelley’s mother, she understands the state needs to be good stewards of tax dollars, but she also feels the North Carolina Department of Health and Human Services (DHHS) should train and oversee the Managed Care Organizations (MCOs) better -- those are the companies that administer the Innovations Waiver. I’m not just fighting for my daughter. I’m fighting for all of these outliers who are out there,” she said. “You have the right to fight for what you need and that’s what I’m doing.”

The MCO that handles cases in Mecklenburg County is called Alliance. It emailed Action 9′s Jason Stoogenke that it has “made significant investments to expand and improve care for people with behavioral health ... needs” but it wouldn’t discuss Chelley’s case for privacy reasons.

Alliance’s full statement:

As I mentioned during our call, Alliance Health has made significant investments to expand and improve care for people with behavioral health (mental health and substance use) needs and those with intellectual and developmental disabilities. Our focus has been on expanding crisis services, increasing provider rates, and addressing provider workforce issues. Here is a link describing those crisis services on our website: www.alliancehealthplan.org. We want to make sure individuals and families are aware of these important services in their communities, so any assistance in spreading the word about them would be much appreciated. We are very proud of our partnership with Mecklenburg County and grateful for the County putting trust in us by contributing funding to expand care locally. Below are examples of some crisis services in Mecklenburg. We greatly appreciate the commitment and insight of our County partners around these collaborations and are excited about additional projects we are developing with them currently.

• Opened the Steve Smith Family Foundation Behavioral Health Urgent Care, a public-nonprofit partnership involving the Steve Smith Family Foundation, Alliance, and Mecklenburg County.

- A 24/7/365 behavioral health urgent care center in Charlotte opened in March 2023 and serves youth and adults of the Mecklenburg community.

• We launched Mobile Outreach Response and Engagement Services (MORES) in Alliance counties.

- These MORES teams are specialized mobile crisis providers receiving referrals in Mecklenburg County and across the Alliance service area.

Some state lawmakers are taking more of an interest in this system. They held a Town Hall two months ago. At least four of the hosts represent families here in the Charlotte area.

N.C. DHHS sent the following statement:

We understand that accessing benefits can be difficult to navigate. NCDHHS continually works with providers and beneficiaries to get people the care they need. Beneficiaries can reach out to the N.C. Medicaid Contact Center at 1-888-245-0179 for assistance and information. Additionally, beneficiaries can directly contact their regional LME/MCO for support.

On July 1, the department launched its Behavioral Health and Intellectual/Developmental Disabilities Tailored Plans to improve access to behavioral health services through LME/MCOs. Tailored Plans are a new kind of N.C. Medicaid Managed Care health plan designed to better integrate physical and behavioral health care for North Carolinians covered by N.C. Medicaid who have a serious behavioral health or substance use disorder, I/DD or TBI.

NCDHHS also continues to invest in community-based behavioral health services, such as behavioral health urgent cares, community crisis centers and peer respite support services, to increase availability and access to services throughout North Carolina. Please see our recent recording and presentation slides on accessing community-based services through 1915i for more information as well as our Tailored Plans Toolkit. The toolkit is a collection of resources to help people understand Tailored Plans, written in both English and Spanish.

If a beneficiary is unable to reach resolution with their health plan, a Member Ombudsman is available to contact. They can be reached at 877-201-3750 or at info@ncmedicaidombudsman.org. More information is available through N.C. Medicaid Ombudsman.

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