SanLuisObispo.com

January 28, 2008

Atascadero family out of options in caring for disabled son

Caught in safety net's gap - Social services aren't designed to help the Lewellings, whose son Jeff was paralyzed in a bike crash

By Sara Arnquist

Jeff Lewelling uses a walker to move around because the left side of his body is partially paralyzed.

He forgets the year and where he lives but remembers that he loves playing pool and the mushroom omelets at Hoover’s 101 Cafe in Atascadero.

Lewelling is 43. He suffered a traumatic brain injury three years ago after being struck by a car while riding his bike on El Camino Real in Atascadero. He flew 30 feet and landed on his head. He was not wearing a helmet.

Had Jeff Lewelling’s accident occurred before he had turned 18, he would have qualified for an array of lifelong, publicly funded services designed to help him live as independently as possible.

But because his accident happened at age 40, his father and stepmother, Floyd and Debbie Lewelling, say few services exist to help them with their son.

“He won’t have a normal life ever again, and no one’s going to help us out,” Debbie Lewelling said.

The Lewellings have managed the system fairly well for three years, but their frustration is roiling now because they face dif ficult choices about where their son can live.

Lewelling requires 24-hour supervision, his parents said. After nearly dying, he made a slow recovery. He had to relearn to chew his food and to use the bathroom. He has memories from before the accident, but his short-term memory is meager. He will turn on the stove and forget to turn it off. He wakes up at night and forgets where he is.

He qualifies for $1,200 monthly from Social Security, Medi-Cal health benefits and limited services through Options, a Morro Bay-based program for people with traumatic brain injuries.

Options gets funding through California’s only traumatic brain injury program, which has a total statewide budget of $1.1 million a year.

“The problem that happens when someone is injured after age 18 is there’s no really comprehensive system to provide the level of care or services folks need to stay in the community,” said Todd Higgins, traumatic brain injury coordinator for Protection&Advocacy Inc., a Sacramento advocacy law firm for people with disabilities.

The $35,000 settlement Lewelling received after his accident is almost gone. That money subsidizes the $3,000-a-month residential care home in Atascadero where he has lived since leaving the hospital in August 2004.

His parents don’t want to move him. But they can’t afford to keep him there, and no public program will pay for it. Medi-Cal will pay, however, for Jeff Lewelling to live in a nursing home—at twice the price.

Floyd Lewelling doesn’t understand.

“Medi-Cal or someone should be able to evaluate the situation and see it’s cheaper (where he lives now), and he gets the care he needs,” he said.

But that’s not the way the law works, Higgins said.

California does not have federal approval to use Medi-Cal dollars to pay for community-based services, such as board-and- care homes, he said, and people with traumatic brain injuries don’t qualify for county mental health services.

Lawmakers approved a bill last year opening the way for federal waiver applications, but not until 2009.

Twenty-four states have such programs because they realize “the cost of maintaining someone in the community is drastically less than keeping someone in a skilled nursing facility,” Higgins said.

The Lewellings cannot imagine their 43-year-old son in a convalescent home. He may not have full cognitive ability, they said, but he’s not ready for a nursing home.

Ideally, Debbie Lewelling said, Jeff could live someplace that gave him chores or a small job and that allowed him to socialize with people his age.

Moving him to a nursing home “would take away any self-respect or self-esteem he has left,” she said.

But that may not be an option either; two local nursing homes have turned down Jeff’s application because he is too young and can have behavioral issues.

The Lewellings’ only other option would be to bring Jeff home. Medi-Cal would pay for someone to care for him, but not all the time.

Debbie and Floyd Lewelling both work, and they have five other children and several grandchildren who demand their time for baby-sitting, among other things. They say they cannot provide the full-time supervision Jeff needs, and their house isn’t disabled accessible.

“We don’t know where to go,” Floyd Lewelling said. “We’re at a dead-end road.”

Unfortunately, there are no good answers, Higgins said.

The state Department of Mental Health formed a Traumatic Brain Injury Advisory Board in November to develop possible solutions for situations such as the Lewellings’.

Higgins is on the task force, but he isn’t optimistic about the prospect of adding or expanding programs given the state’s $14.5 billion deficit.