Support for people with brain injury

By Todd Cohen

RALEIGH, N.C. — An estimated 200,000 people in North Carolina, or about two percent of the population, are living with the long-term effects of brain injury, with an average lifetime cost of care for a moderately injured young person with brain injury totaling over $4 million.

Yet state lawmakers allocate only $2 million a year specifically for services for traumatic brain injury, or about $10 per person with a disability related to brain injury.

Working to provide support for people affected by brain injury, and to raise awareness about its impact, the need for more funding, and ways to help prevent it is the Brain Injury Association of North Carolina.

“It’s life-changing for the person, and for the family many times,” says Ken Jones, executive director of the Raleigh-based Association. “The life that they knew prior to theĀ  brain injury is different than life after the injury.”

Individuals ages 15 to 24 suffer the highest numbers of severe traumatic brain injuries, which are the leading cause of death and disability among young people in the state, the Association says.

Males are 1.5 times more likely to sustain a brain injury than are females, and falls and motor-vehicle accidents are the top two causes of brain injuries.

Brain injuries can affect an individual’s emotions, cognitive or physical abilities, or decision-making skills. Many individuals affected by brain injury experience short-term memory loss.

Founded in 1984 and operating with an annual budget of $675,000 and a staff of 10 people, the Brain Injury Association receives about half its funding from the state, 40 percent from the federal government, and about 10 percent through private fundraising.

Its main fundraising activity has been a walk-and-wheelchair event targeted to families affected by brain injury, but a subcommittee of its board is developing a new fundraising strategy aimed at the general population.

The Association provides 160 training sessions a year serving a total of 6,000 brain-injury survivors, professionals and families, and also provides an annual conference for each of those groups. And it provides education sessions on concussions at 10 schools.

The Association also hosts a resource-and-referral hotline and website that field a total of 6,000 phone calls and email messages a year.

To raise awareness, it hosts events, such as Strike Out Concussion days last year at Carolina Mudcats and Asheville Tourists baseball games. And it distributes a weekly e-blast and quarterly newsletter to about 2,000 subscribers.

Jones, former CEO for Eastpointe Human Services, a managed-care organization that serves 12 counties in Eastern North Carolina, is not a registered lobbyist but spends a lot of time in the Legislative Building in Raleigh.

Last year, he talked to state lawmakers about the impact of a proposed bill that would have eliminated the requirement that adults riding motorcycles wear helmets. The bill did not pass.

North Carolina is the leading state in the U.S. for lives and money saved as a result of its universal, mandatory helmet law, Jones says. In 2010, helmet use in the state saved $163 million for every 100,000 registered motorcycles.

In the short legislative session that begins in April, Jones will be talking to lawmakers about the need to increase funding for individuals with brain injuries to support not only medical treatment, but also residential care and integrating survivors back into the community.

The Association also supported a change in Medicaid funding that will affect 107 individuals in the state on a pilot basis over three years starting this year, providing reimbursement for care that can be delivered at home or in an outpatient clinic rather than a hospital or nursing home.

“This could happen to any individual and any family,” Jones says. “There is very little support. A family ends up caring for the individual, in severe cases 24/7, or the individual becomes part of the public system in an institution.”

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