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With a disabled son, Cary mom wants a voice in NC Medicaid changes

CARY Early last year, the state Department of Health and Human Services asked for the public’s input on reforming Medicaid.

Colleen Leonard, the mother of a severely disabled teenager, Mason, wanted to have her say. She sees the Medicaid services as a blessing, literally a matter of life and death for her son, who was brain damaged at birth and cannot be left alone.

Leonard, 47, knows that subtle or seemingly small changes in the law can reverberate through the Medicaid system and end up having a huge impact on what services a family receives.

But Leonard, a keen advocate schooled by years of navigating the Medicaid bureaucracy, was stumped by the six-page Request for Information, with its talk of “patient portals” and “cutting-edge reimbursement methodologies.”

“The current RFI is certainly written for Providers and Health Agencies and not for your average recipient/family,” Leonard wrote to the governor and the department. “I feel this current RFI leaves out a lot of valuable input as families I’ve spoken with feel it’s too difficult to understand/respond to.”

When Medicaid law and policy are debated, providers have a louder voice than families such as the Leonards, who live in Cary. And while providers and recipients of Medicaid often share common ground, people served by the program sometimes have different concerns than those who make money from it.

Last year, a policy change eliminated weekend hours dedicated to teaching functional skills for Mason, 14, who is severely handicapped and needs constant attention during waking hours. He cannot dress or bathe himself, get a snack or keep himself safe in his own home.

Changes proposed this summer by the state Senate could end Mason’s in-home services.

Colleen Leonard, a former clinic manager, works two days a week at home as a tutor. Insurance from her husband’s job as a construction manager helps pay medical bills, but not for the “habilitative” services that help Mason develop life skills or basic functions. The Leonards benefit from Medicaid policy that provides services to the disabled in their homes at a lower cost than in a state institution.

Leonard says she can’t afford to make political contributions or hire a lobbyist.

“We are the most burdened and weighed down, and we can’t stand up for ourselves at the legislature,” she said.

Voices of the powerful

Consider the people in attendance for a legislative oversight hearing this spring:

The sign-in sheet reveals lobbyists and executives for insurers, (Aetna and Blue Cross and Blue Shield), pharmaceutical manufacturers (Becton Dickinson, Novo Nordisk, GlaxoSmithKline and others), managed care organizations (Molina, UnitedHealthcare, WellCare, AmeriHealth), hospitals (Duke, Baptist Medical Center, the N.C. Hospital Association, Novant), lobbying groups representing doctors, nurses, anesthesiologists, psychiatrists and more, and even information technology contractors for DHHS (CSC, Truven, PSG).

The lobbyists and providers also support those making the laws. One of the key Medicaid figures is Rep. Nelson Dollar, the lead budget writer in the House and a Medicaid expert. In his most recent campaign report from the second half of 2013, Dollar raised $164,000, three-quarters of that from doctors, dentists, speech pathologists and others with a direct stake in Medicaid.

Dollar acknowledged that providers provide the bulk of the input during the legislature’s deliberations.

“There’s a partnership between the state and the provider groups,” Dollar said. “We want to hear from the people providing the care.”

But families and recipients do get their say, he said, pointing to a January public meeting the McCrory administration conducted on possible Medicaid reform.

“A whole host of consumers and advocacy groups were there,” said Dollar, a Cary Republican. “Everyone who wanted to speak had their opportunity.”

Silence from DHHS

One of the speakers was Mary Short of Taylorsville, one of the few private citizens to advocate regularly at the General Assembly for Medicaid recipients. Short’s 35-year-old daughter, Katie, is developmentally disabled and lives at home.

“Few guardians can get to Raleigh,” Short said. “Our voices are almost never heard.”

Leonard, who is not able to take her son to public meetings, did submit her thoughts to DHHS for Medicaid reform: How the services help her son stay at home, where care is better and cheaper.

“His heart AND ours would be very broken if we were unable to provide the support he needed to remain in his home,” she wrote. “Institutionalization is the most restrictive, significantly more expensive and lower quality of care for children and adults with special needs.”

Leonard went into great detail with her recommendations, from more auditing and less costly administrative overhead to helping the disabled transition to adulthood to the role of case managers.

In March 2013, she sent her input to the department. Leonard said she has heard nothing since.

Neff: 919-829-4516
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