The Arc focuses on disabilities

By Todd Cohen

RALEIGH, N.C. — Getting through a typical day can be a challenge for individuals with developmental¬† disabilities — or one in 40 North Carolinians, by rough estimates, and possibly a lot more.

Depending on the nature and extent of their disabilities, they can find it difficult to get out of bed, get dressed, shop for food, get to work and even do their job if they are employed, or make decisions about their health, money and housing.

Working to provide support for people with disabilities is The Arc of North Carolina, an affiliated chapter of The Arc of the United States that also supports 25 local chapters throughout the state.

Local chapters provide services to individuals with disabilities, or serve as advocates, or both, while the statewide group works to support local chapters and does not compete with them, says John Nash, its executive director.

“Where services are not available, we provide some direct service,” he says.

Operating with an annual budget of $16 million and a staff of 700 people, and generating 80 percent of its funds through Medicaid, The Arc serves 3,000 to 4,000 individuals a year and works as an advocate on disabilities issues.

In addition to its Raleigh headquarters, it operates offices in Asheville, Charlotte, Greensboro and Wilmington, as well as small satellite offices in Greenville, New Bern and Southern Pines.

It works to connect individuals with disabilities to services that range from finding physicians or housing or, through a separate purchasing agency, with medical equipment such as wheelchairs and hospital beds.

It connects individuals with disabilities with people — either independent contractors or its own employees — who can provide 24-hour support for individuals with disabilities.

Assigned by clerks of court, it serves as a guardian for individuals with disabilities, and works with an agency that provides them with trust and financial services.

It supports employment for people with disabilities, assessing their skills and job goals, helping them prepare for and find jobs, and providing job coaches in the workplace if needed.

And it connects people with housing and owns 485 properties throughout the state that house about 2,400 individuals, contracting with other organizations to manage the properties or provide support services for the tenants.

The Arc also works as a lobbyist in the state General Assembly. In this year’s session, it helped lobby for a law that now allows people with disabilities to use “529” savings accounts to save up to $100,000 without affecting their Social Security, Medicaid and other benefits that support their disabilities services.

And it supports legislation, approved by the N.C. Senate but still pending in the N.C House of Representatives, that would provide insurance coverage of services for people with autism.

In addition to Medicaid funding, The Arc receives funds from the state and revenue from the low-income housing it owns, including rent from tenants and federal and state rent subsidies.

The Arc also is gearing up to generate private support, initially through partnerships with corporations, and within a year aims to launch an effort to raise money from individuals, Nash says.

Lisa Berwyn, former director of membership services and operations for the North Carolina Business Committee for Education in the Office of the Governor, joined The Arc in August as its first director of business development.

“Our goal is to help connect The Arc and people with disabilities across the state with corporations,” says Nash, “helping us move our mission forward in our advocacy efforts.”

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.”