Joyful Care, Inc.

Jun 17, 2002

by AARON CRAWFORD
Bristol Herald Courier

    BLOUNTVILLE -- Del Ray and Madeline Nichols don't look like innovators, but that's exactly what they are.

    When they went through the arduous process of forming a corporation, it wasn't to start a venture that would make them rich, it was to ensure that their mentally disabled daughter Joy gets the best of care.

    They stand alone as the first people in Tennessee to form a microboard -- a nonprofit corporation devoted solely to the care of only one person.

    They called the corporation Joyful Care Inc., which is in charge of making decisions about Joy's care and for paying for that care.

    Before, the Nicholses received care for Joy, who requires 24-hour assistance, through a group such as Frontier Health or Dawn of Hope.

    "We'd had some really bad experiences," Madeline Nichols said, adding that one major problem was a high level of turnover among medical workers who came to their home to care for Joy.

    "The former agency we had, the turnover rate was 72 percent," she said. "Sometimes you wouldn't even get to know the person before they were gone. There was no stability in Joy's life. Now, the state has offered us another choice."

    Now, the Nicholses hire their own care providers.

    The Nicholses stressed that even though they took the action of setting up the microboard, they are not fully in charge.

    "We are not the sole decision-makers since it is required that the company have a board of directors," Del Ray Nichols said.

    "The board includes me and Madeline, Joy's brother and brother-in-law, a former special education teacher, a pastor and Joy herself," he said.

    The process of setting up the microboard and working to get things in order has been a trying one, the couple said, but nothing compared to the ordeal that the Nicholses have faced with their daughter's illness.

    "I tend to call it Joy's journey because since she was a child she has suffered more than one ordeal," her father said.

    "We weren't supposed to be able to have any more children after our first two, so already she was kind of like a miracle," he said.

    When she was 3, she was attacked by a dog and suffered wounds that required more than 20 stitches. Then, three years later, she fell seriously ill with a fever the doctors never were able to identify, he said.

    Then, at 9, Joy suffered a serious complication associated with the herpes virus that causes chickenpox. The virus went to her brain, causing mental retardation.

    "The doctors told us that the virus is always inside of our bodies and could re-emerge, which it did in Joy's case just last year, causing her to lose sight in her left eye," Madeline Nichols said.

    Through the microboard, decisions are made how best to attain Joy's treatment. The board tries to get the best care for the money the Nicholses have to spend.

    The money they receive is from the state and the federal government, but, as Ruthie Beckwith of the Tennessee Microboards Association stressed, microboards require no more funding than a patient like Joy normally would receive if she were under the care of a large health care provider.

    "The microboards receive the same amount of money that a large provider would if that patient were under their care," Beckwith said.

    Money isn't the issue, however, Beckwith said; it is the choices that the families of those with disabilities have in caring for a family member.

    "It is all about choices. That is what we want for the families -- more choices," she said.

    Beckwith, who spent years with the People First of Tennessee organization, said she got involved with the Tennessee Microboards Association to fight for families.

    "I wanted to fight so that people could have more control over their own fate," she said.

    That spirit has led her to fight for all types of alternative care.

    "There will be other options that we will soon have, but the microboard was a proven method, so it came first."

    Beckwith and the microboards association are in the process of setting up seven more microboards in Tennessee and hope to have 20 before year's end.

    The process of establishing a microboard was a trying one, said Del Ray Nichols, adding that he hopes his family's experience will benefit those trying to get approved.

    "You have a 50-page application to fill out and you also have to meet all the regulations and standards that the large providers such as Frontier Health do, so it isn't easy," he said.

    Because of their experience, they get calls from those in the process hoping for tips and information.

    That's exactly what the state microboard association is designed for.

    "Tennessee is the only state with an association which is designed to help families going through the process," Madeline Nichols said.

    Although Joyful Care Inc. has been incorporated only since late May, the Nicholses already have been making long-range plans.

    "Our goal is to make the quality of Joy's life better," her father said. "We don't just want her on the couch but to be able to get her out in the community."