Disabilities group adapts to health care changes

By Todd Cohen

RALEIGH, N.C. — Two years ago, The Arc of North Carolina provided case management for nearly 4,000 people with intellectual and developmental disabilities, making sure they were linked to the proper funding, helping them find the right health-care provider, and monitoring the services to make sure they were delivered properly.

But in the face of sweeping changes in the way the state regulates health care, the agency is phasing out that brokering service, which generated $10 million a year in revenue from government reimbursements.

Under the new system, state government will contract with regional quasi-governmental agencies known as “managed care organizations” that will function as insurers that fund services for people with disabilities while also writing their treatment plans.

The new system, which took effect February 1, replaces so-called “fee-for-services” for which state government has been the main funder of services through federal Medicaid funding, contracting with agencies like The Arc.

Dave Richard, the agency’s executive director, says the new system will erode the role that nonprofit agencies have played as advocates for clients.

“That’s probably too much power in one place,” he says.

Formed in 1954 by families throughout the state whose children with disabilities had no options for where to go to school, The Arc provides direct services to 4,500 people and operates with eight offices, 500 staff members and an annual budget of $20 million.

And in collaboration with 33 chapters that grew out of the parent groups and operate separately, The Arc serves over 10,000 people.

An estimated 1 percent to 1.5 percent of the U.S. population, including 120,000 to 150,000 North Carolinians, have intellectual or developmental disabilities, ranging from cognitive deficits to cerebral palsy and autism, Richard says.

In comparison, he says, the state serves 35,000 to 45,000 people who seek services, a number that does not include school children with milder disabilities who do not ask for support for needs that may be more intense.

The Arc serves as an advocate, both on behalf of clients and with state lawmakers and policymakers, and provides a range of direct services.

It manages 400 properties that serve as long-term housing for over 1,200 people, for example, and provides in-home support for 250 people with intellectual and developmental disabilities.

It also works at any given time to help about 200 people with disabilities find and keep jobs, mainly in Wilmington and Asheville, and serves as corporate guardian for about 700 people, helping to make decisions on medical and other issues.

In the face of changes in the health care system, The Arc has been working, often in collaboration with other agencies, to help make sure long-term services are in sync with short-term care, Richard says.

In partnership with Easter Seals UCP of North Carolina & Virginia, along with several smaller groups, for example, The Arc last year applied, although unsuccessfully, for $2.5 million in federal funding to make sure clients receiving long-term care were connected to physicians offices and getting periodic checkups and support.

“We’re trying to create a stable system,” Richard says, “where people with intellectual and developmental disabilities can have the support to live meaningful lives in the community.”

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