Knoxville ArticleAuthor: tpmeredith. 1906 Reads
|The business of support
Microboards let family, friends provide personalized, professional care for loved ones with special needsBeth Campbell loves to shop.
The decal on the windshield of her van - Wal-Mart Warriors - publicizes her favorite place to go.
She also goes to the park and to the movies. She swims and goes bowling. She even takes weekly computer classes and sells Avon.
But life hasn't always been this way for the 37-year-old with cerebral palsy.
Concerned their daughter wasn't getting the services she wanted and needed from agencies overseeing her care, Jim and Carolyn Campbell formed a microboard.
Microboards are nonprofit businesses owned and operated by a close-knit network of family and friends for the sole purpose of supporting individuals with special needs.
All funding and services provided for the individual are under the direction of the microboard, including day-to-day operations.
Proponents say that control allows families to meet the specific needs of their loved ones while creating opportunities for them to participate in the community.
It also establishes a network of support and a process aimed to help the child once the parents are gone.
But operating a microboard isn't easy. It must follow the same rules and regulations as other service providers. And it must absorb thousands of dollars of startup costs, which families recover predominately through Medicaid funding and other government assistance.
The Campbells admit they question their decision almost daily.
"We'll say, 'Why in the world did we do this?' Then we'll look at Beth and we know why," Carolyn Campbell said.
Beth Campbell started showing symptoms of her disability at 3 months of age.
She is confined to a wheelchair and has little control over most of her body. She recently developed a seizure disorder and swallowing problems.
"It's a constant change, and the staff has to adjust," Carolyn Campbell said.
Beth requires with her at all times two people the Campbells hire through the microboard. Finding qualified employees is one of the hardest challenges, but the Campbells said they are fortunate to have a good staff.
"Most people who call think this is a sitting job. I tell them, 'No. I have a working job.' Beth is very active. They get a workout when they come here. She goes places most every day," Jim Campbell said.
The Campbells live near the rural Mossy Grove community in Morgan County. That made getting services for their daughter difficult, he said.
There is less than a handful of agencies that service the area, and none are in the county.
Their daughter's last agency, the Michael Dunn Center in Kingston, was a good facility, Carolyn Campbell said, but it was such a long drive that the agency didn't think it could provide adequate supervision.
So they turned their attention to forming a microboard, which became operational in November 2005.
"We feel we are able to provide Beth with the best possible care that she can get right here in our home, because we're here to watch over her and make sure things are done that should be done," Jim Campbell said.
"It's a value thing," Carolyn Campbell said. "Some things people value more than others, like getting to eat what you want or having a bath every day. We almost had to argue just to get her a bath."
As a result, the Campbells say their daughter's quality of life has improved.
That's the hope of Patrick Kelly and his wife, Patricia, of West Knoxville. They started a microboard in June for their 28-year-old daughter, Michael, who is epileptic and developmentally disabled.
The process took two years. Looking back, Patricia Kelly said she's not sure she would have formed a microboard had she known how involved it would be.
But one thing is certain, she said. It will secure a long-term future for her daughter.
"I can see it will be better, and it will be worth it," Patricia Kelly said. "The whole thing is for her future, to provide a support system. They will know her so well. They will know her needs."
The concept of microboards caught the attention of the Tennessee Council on Developmental Disabilities about eight years ago, Executive Director Wanda Willis said.
"We did some research and we decided it was an option for services that should be available to people in Tennessee," Willis said.
Through a grant, the Tennessee Microboard Association, a nonprofit organization founded and headed by Ruthie-Marie Beckwith, was formed.
Beckwith said she wanted to spearhead the effort because of her commitment to helping the disabled chart their own course in life. She also is involved in a microboard for an individual for whom she serves as legal guardian.
The association, modeled after a group in Canada, provides support and training to those interested in starting a microboard.
Since the first microboard became operational in 2002, 31 have been started across the state. Five are in East Tennessee. But at any given point, Beckwith and her staff may work with 70 to 120 families.
"And so it varies," Beckwith said. "Sometimes people start and they stop, because life happens. And then they get that under control and they pick back up."
While other states have microboards, Tennessee is the only one in the country that has an association to support them.
Beckwith, formerly with the advocacy group People First of Tennessee, often fields calls and makes presentations across the country and abroad. She is doing work in New Mexico, Iowa and Georgia.
She also is working with the state Commission on Aging and Disabilities, which funds services and supports people who are elderly and have other disabilities.
Microboards, Beckwith said, can be set up for anyone.
"So theoretically a microboard could support a daughter and a grandmother who are part of a common need for support," Beckwith said. "We want to make sure that this isn't just limited to one group. The resources are much more limited, but it is doable."
When a family decides to form a microboard, it goes through a multi-step process beginning with a basic understanding that it can't be done alone.
Asking others to help was hard, Patricia Kelly said, but you slowly learn to do it.
"You cannot possibly do it by yourself. You hate to be beholden to people, but these are people who love your child and your family member and they want to. You come to accept that," she said.
A microboard must have at least five people, typically family, friends or others in the community who are part of a volunteer board of directors committed to working with the family.
Board members learn what it means to be a non-profit organization, what a board of directors is and what their responsibilities are from a business perspective.
The entire group also determines a plan for what the individual wants out of life, Beckwith said.
"We want people to look beyond what social services has to offer. There is more to life than what the state will pay for," Beckwith said. "We want to look at the big picture because ultimately that's what the board members who've been coming to the table are charged to help carry out."
That can mean helping the disabled individual struggle through day-to-day activities or go out and be a part of the community, Beckwith said.
Or in the case of one individual in Middle Tennessee, it can mean fulfilling a dream.
The person, Beckwith said, loves boats. He collects stray lumber trying "to create a boat that is in his head." A board member found a place where a group of people can get together and build a boat.
"If they were part of a traditional provider agency, the opportunity would never arise," Beckwith said. "But the whole board, the whole group of people now are trying to figure out how they can coordinate having the time off to go over to West Tennessee to this boat-building place where they will come home with a real boat that he can lay claim to and say, 'I own this and I helped to create this.' "
But they are beginning to realize how important it is for families to have microboards as an option.
"They recognize that they cannot meet the needs of every person in the way that every person wants their needs to be met," Beckwith said. "I think people have realized that it takes a very special person, a very special family to have the commitment that it takes to make this successful."
Microboards are not ideal for everyone, she said. It does have disadvantages, like the endless amount of paperwork.
In a back room of the Campbell home, a bookcase is full of notebooks with information on medicine, therapies, staff notes and personnel records. The historical paperwork is in the basement of their home.
"The state requires so much documentation," Jim Campbell said. "Really, everything has to be completely documented. It becomes an enormous undertaking."
It also can cause a financial strain on a family who must cover all initial start-up costs, which can range from $2,000 to $10,000 depending on the size of their first payroll.
The Campbells, who have a paid staff of between eight and 10 people, had to borrow money from the state and take out a personal loan. They still owe about $7,000.
"It was a very big challenge," Jim Campbell said. "They have a lot of requirements we have to make sure we meet. Where an agency has a lot of people, it's basically just the two of us. We've had to learn a whole lot in a short period of time."
But those who support the concept say the rewards are great.
Individuals who have microboards have had dramatic life changes that are exciting, Beckwith said.
In West Tennessee, a young woman was told for three years by others that they would help her find a job.
Her microboard started in May, and she started her orientation at Chick-fil-A in July.
"We're able to follow through with things that we promise," Beckwith said. "We do get distracted ourselves as microboards, but we really want to see the things happen that we say and write down on paper are going to happen."
Business writer Carly Harrington may be reached at 865-342-6317.
PHOTOS BY J. MILES CARY
Beth Campbell, 37, left, who has cerebral palsy, communicates with Freda Sexton through a computer. Campbell’s round-the-clock caregivers work for a microboard formed by her parents, who own and operate the nonprofit business.
Caregivers Freda Sexton, left, and Kristy Pennington, back,move Beth Campbell with an electric hoist in the Campbell family’s homein ruralMorganCounty. Sexton and Pennington work for the microboard formed by Beth Campbell’s parents to provide her with the services she wanted and needed but that were not available in the rural area near Wartburg.
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