All about choice: Locals live, work with developmental disabilities

Sue Guinn Legg • Jul 12, 2014 at 10:20 PM

David Coleman works two part-time jobs. One he has held for eight years and the other for 30.

He shares his apartment, his rent and his utilities with two roommates. He spends his extra money on weekend trips to the movies, music CDs and his favorite films on DVDs.

He exercises, lifts weights and prides himself on his biceps. He considers himself a pretty good dancer, likes to sing, attends church regularly and counts as many as 10 women as potential girlfriends.

What sets Coleman apart from other single men in their 50s is the developmental disabilities that make everything in his life a greater challenge and the 24-hour individual support services he receives through Tennessee’s Medicaid waiver program.

Like Coleman, Donna Smith shares her home and her expenses with a house mate.

She diligently feeds and nurtures her two house cats, an assortment of fish and a frog.

She enjoys being outdoors, loves the sound of birds’ songs and frequently visits the parks near her home, where she gives back to her community by picking up litter.

Smith does housework and, when she is well, she spends up to nine hours a week answering the phone at the offices of the Envision home care company in Jonesborough.

She likes thrift store shopping, computer games and clipping magazine art, with which she creates colorful decorative collages.

She’s spent most of this year battling her way through chemotherapy and radiation for breast cancer.

But the most remarkable thing about Smith is everything she does, she does with one arm, one leg and a complicated list of physical and intellectual issues she’s dealt with all of her 55 years.

Smith and Coleman are among just over 7,000 Tennesseans with developmental and intellectual disabilities who live and contribute to their communities outside institutional settings through the Medicaid Waiver program.

As a former longtime resident of boarding and nursing homes, Smith will tell you the value of the waiver is the opportunity it gives her “to go and to do more things, to look around and explore and do whatever I want to.”

Malessa Fleenor, executive director of The ARC of Washington County that provides service coordination and case management for 700 adults with developmental disabilities who live independently in 13 area counties, said the waiver serves a two-fold purpose.

“It keeps people out of nursing homes and institutions,” sparing families, the health care system and the government tremendous expense. And it allows people with physical and intellectual disabilities to live, work, play, worship and contribute to their communities “just like everyone else.”

“It’s less expenses and it’s the best way for people to reach their potential, to optimize their abilities and to reduce their disabilities,” she said.

Officially known as the Tennessee Home and Community Based Service Medicaid Waiver, the program is made possible by a 2 to 1 federal and state funding match.

The entire spectrum of services the waiver provides is governed by a set of principles and practices that emphasizes individual choice.

“The state’s Person Centered Practices have been in place at least 10 years and have developed over time,” Fleenor said, and gives every individual control of how their care plans are shaped and carried out.

One of several independent support coordination organizations across the state, Fleenor said The ARC’s role is to provide case management for individuals awarded the waiver.

The state’s Department of Developmental and Intellectual Disabilities determines eligibility, awards the waiver and provides the individual and their family or guardian assistance selecting a case management organization to help them access the services they need, including community based residential services, developmental day programs and sheltered and private community based employment.

Organizations like ARC identify and help individuals access service providers in their home communities, like Envision program in Jonesborough and Johnson City’s Dawn of Hope, one of the largest in East Tennessee. From there, Fleenor said, “It’s their choice.”

Individual choice is the underlying principle in Tennessee’s Person Centered Care Practices and carries through all the community based services.?

Following Smith’s care plan recommendation for six hours of community exposure daily, the Envision staff members who work rotating shifts at her and her housemate’s home are careful to ask what she would like to do before every endeavor.

An afternoon in the park or a ramble through the mall? A day at work or a day or leisure?

Like Coleman and Smith, most of those who are able prefer to work. Their options include shelter workshops like the Dawn of Hope Vocational Center in Johnson City’s Industrial Park and private employers in their community.

Coleman chooses both. He has been employed at the Dawn of Hope workshop since 1984, preferring it over the daily enrichment programming at the Dawn of Hope Development Center. For the past eight years, he’s held down a second job at Logan’s Road House, working a few hours at each job every day of the week.

“Community jobs, that’s where we want we want to see everybody, if they want to be there,” Fleenor said. But, “like everybody else, there are some people who just don’t want to work. They won’t have any money if they don’t. But that their choice.

John Cardwell, director of Dawn of Hope’s vocational programs, said the pay in community jobs typically begins at minimum wage and increases with the worker’s seniority.

“We’ve had some who have been with their employers 20-plus years. It allows them to support themselves,” he said.

“Often, there’s a delicate balance between what they earn and what they receive in Social Security (disability) income. State benefit specialists help with that so they can maintain their waiver and their household budget.

“Usually that works out to about 20 hours a week in a community job. But if there is anyone who wants to work, we will do everything we can to make that happen.”

The sheltered workshop, which contracts with area businesses for jobs its workers can accomplish, pays sub-minimum wages and contributes its earnings to the $11 million annual cost of all of Dawn of Hope’s developmental, vocational and residential programs. About $10 million of Dawn of Hope’s annual budget comes through the Medicaid Waiver program.

Lee Chase, Dawn of Hope’s executive director, said the reality is about one-third of the 75 individuals served by Dawn of Hope’s residential program run short of their household expenses.

“About two-thirds meet their expenses. About one-sixth meet their expenses most of the time. About one-sixth never meet their expenses. And when that happens, Dawn of Hope provides that through its foundation and its workshop.

The other harsh reality noted by both Chase and Fleenor is that in addition to the 7,000 Tennesseans who receive the waiver, there are 7,000 more who are eligible, on a waiting list and receiving no services.

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