Blessed To Be A Blessing

In 2004

Choices. We all make them everyday. What to wear to work, what to fix for supper. Should we stop and refuel the car or let it go a few more miles? Should we eat that deep fried piece of tasty chicken for lunch or go for the garden salad instead. All of these choices effect us on a daily basis in one way or another. We are inundated with them. Choices, choices, choices.

But what about the choices we make that effect other people? Do we offer assistance to the guy with a sign huddled by the side of the road or do we keep going? Are we the first to raise our hands when asked to volunteer or the last? Do we look the other way when we see someone at the grocery store struggling to get all their bags to the car? Do we do something as simple as offering a smile to a passerby on the street or do we put our head down thinking of all those things we’ve got lined up to do that day?

At a time of year when most of us reflect on the past and look to the future to make one change or another, let us take a few moments to remember that a kind word goes a long way, that a smile will brighten someone’s day, and just when you think you are doing something that will bless others, you will be the one to receive the blessing.

Family Support

Keeping Families Together

The Arc of Washington County began its Family Support Program in 1992. It offers the program to assist persons with severe disabilities and their families in their efforts to remain together in their homes and communities. Our service area includes Washington, Carter, Hawkins, Johnson, Unicoi, Sullivan and Hancock counties. This program is funded under an agreement with the State of Tennessee, Department of Finance and Administration, Division of Mental Retardation Services.

Families are the greatest resource available to each other and to individuals who have severe disabilities. The values of the program are deeply rooted in family involvement and empowerment to provide what the person or family needs in order to function in their home or community. Its goals are centered around keeping the families together by providing assistance so the person with a disability may live at home or in an independent setting. Family Support works to improve the caregiving ability of families and helps them find and use available supports.

The Family Support Program is comprised of three active councils, a majority of whose members are individuals with disabilities or family members. At the State level, a Family Support Council, participates with the DMRS in the development of program policies and procedures, and the implementation of Family Support. The program also includes District and Local Councils which advise FS agencies, provide oversight, and make recommendations to the state council in funding needs and priorities for services.

To be eligible for Family Support a person must be a resident of the State of Tennessee and have a permanent, severe disability with at least three functional limitations and live in an unsupported setting (not state or federally funded). There is no age requirement and there are no financial guidelines. Family Support can provide respite care, personal assistance, homemaker services, child care, minor home repairs, specialized equipment, clothing, supplies, nutritional needs, vehicle modifications, nursing services and any other assistance the family needs to remain together and/or to maintain independence. Once needs are determined and approval has been granted from a local council, an individualized plan will be developed for the person or family receiving support. Currently approximately 200 people have been approved for services. Unfortunately, there are approximately 300 people on Waiting Lists to receive services in our service area. The Division has requested an increase in the Family Support Program for next year. We need your help. We need families to advocate for the program by contacting their Legislatures (Senators and Representatives) about the Family Support Program. The Family Support Program is one of the most “family friendly” and cost effective programs for which a majority of families are very thankful, but it needs your help to expand and enhance services to assist more families like you.

Please contact Alisha Ricker at (423)-928-9362 ext. 215 for more information.

Meet The New Staff Of The Arc Of Washington County

Angie Leonard is a recent graduate of the University of Tennessee with a bachelor’s degree in Psychology. She has accepted the position of Office Administrator at the Arc. Angie will be a great addition to our team given her sunny, outgoing personality and her attention to detail.

Angelia Reedy has been hired as an independent support coordinator and will assist individuals with disabilities and their families in East Tennessee. She has both office and field experience and previously worked as an instructional assistant to children with disabilities. She is a nature and animal lover and loves to go hiking and camping with her daughter.

Crystal Burleson will be working as a family support advocate. She has a business degree from East Tennessee State University. She is enthusiastic about the opportunity to support individuals with disabilities and their families served by the Arc’s Family Support Program.

Stacey Hendrickson comes to us from The Arc of Frederick County in Baltimore, Maryland where she worked as a service coordinator and advocate for individuals with developmental disabilities. She has volunteered for Habitat for Humanity and is a current pen pal with a woman with developmental disabilities.

Sheri Peets has been hired as an independent support coordinator and will work mainly with persons served in Claiborne County. She has a bachelor’s degree in Social Work from East Tennessee State University and has five years of experience working with individuals with disabilities and their families.

We, at the Arc, are looking forward to getting to know these talented individuals and watching them learn and grow in their new positions.

Time: A Precious Commodity

Take a deep breath and then exhale. Feel the stress and tension leave those tight muscles. Like most parents, Moms and/or Dads who utilize the Arc of Washington County’s Respite Program probably feel that way as they drop their children with disabilities and their siblings off at Keystone Presbyterian on Friday nights, where the respite center is located.

For several hours each Friday night, parents have some time to themselves, time to run errands, time for dinner and a movie, but mainly just time. Time to relax, knowing that their children are being taken care of in a loving, nurturing environment.

There are all kinds of activities for the kids to do while Mom and/or Dad take a break. Movies, puzzles, games and snacks are big highlights for the kids.

It takes a great deal of patience, kindness, love and unselfishness to be a parent. Being a parent of a child who has physical and/or mental disabilities is even tougher. Parents have reported that the time away on Friday nights rejuvenates them, eases the stress level, and prepares them for the coming week.

Other benefits include allowing siblings without disabilities to interact with and relate to other children in the same situation and providing the family member with a disability the opportunity to build new relationships and move toward independence. It also gives a much needed change in the daily routine for all the family members.

This program is available to any individual with a developmental disability living in upper East Tennessee. There are no restrictions on age or severity of disability. Placement depends on availability.

The Arc’s Respite program is funded under an agreement with the State of Tennessee’s Department of Finance and Administration, the Division of Mental Retardation Services and the Johnson City Area United Way.

Many thanks to Keystone Presbyterian for housing the respite center and for the caregivers who provide excellent care to the families who utilize the service.

Member Profile: Jennifer Moreau

People Who Make A Difference

Jennifer Moreau, Early Intervention Specialist for the Arc of Washington County has a knack for working with children. Her past work experience includes elementary school student teaching, being a nanny and working in childcare facilities. She has an undergraduate degree in Speech Therapy and a Master’s in Early Childhood Development.

After she completed graduate school, Jennifer headed to Ecuador as a member of the Peace Corps. There she worked in a childcare facility for children whose parents were away from home each day selling their wares at the market. “I loved my time in Ecuador. It was a great experience,” admits Jennifer, with a big smile.

She has been described as a “real go-getter”, determined, caring and funny - all qualities that are helpful when working as an early interventionist. Working with young children with disabilities is a tough job, but one that Jennifer faces with great enthusiasm. “She has a wonderful relationship with the families she serves,” said Carol Matherly, fellow early interventionist.

The way she gets along with the kids and their families spills over into her relationships with coworkers at the office as well. “Jennifer would do anything in the world for you,” said Kim Reid, coworker. “She is so thoughtful and is always willing to lend a hand when needed.”

In addition to her work at the Arc, Jennifer probably never has a dull moment. She has a 7 year old son that keeps her hopping between school activities and basketball games. She volunteers in the community, likes to exercise, and serves as a member of an early intervention group known as LICC which stands for the Local Inter-Agency Coordinating Council as well as the Foster Care Review Board.

Jennifer has many talents, and we are thankful she decided to become part of the Arc family three and a half years ago.

Tennessee Disability Coalition

Advocating For People With Disabilities

Special Insert: January 2004

Somewhere in Upper East Tennessee, a staff member who works as an advocate meets with someone who has mental retardation, just to make sure things are going smoothly at work and at home. The advocate notices the client isn't wearing a heavy coat in the middle of winter, then makes sure one is provided.

Another advocate helps arrange for a high school student with disabilities to go on a prom date, and the event is a big success for everyone involved.

Throughout the state, dedicated staffers and volunteers work to get people with disabilities registered to vote. If the same percentage of disabled voted as non-disabled people, it would mean 133,600 more Tennessee voters. Meanwhile in Nashville, staff works to get an amendment passed that will help people with disabilities.

In Washington, D.C., lawyers meet with officials to discuss a landmark legal case before the Supreme Court that will decide if a certain part of the Americans with Disabilites Act is constitutional.

These are all tasks taken on by the Tennessee Disability Coalition. The TDC is a collection of 45 agencies throughout the state, including the Arc of Washington County, advocating for people who have disabilities, whether it's at a legislative level or a grassroots level.

"All the way from top to bottom, they do some of everything," says Lorie Copas of the Arc of Washington County. "It's really a positive influence in the state."

Perhaps the TDC's biggest virtue is the fact that it is not beholden to any other organizations or agencies. The coalition works independently, therefore doesn't have some of the restrictions other organizations do.

Its mission statement: "The Coalition promotes the full and equal participation of men, women and children with disabilities in all aspects of life. ... to advocate for public policy that ensures self-determination, independence, empowerment, integration and inclusion of individuals with disabilities in all aspects of society."

This means everything from handling legal questions and legislative issues to looking for financial, physical or sexual abuse at the individual level.

"The core of our mission is to get good public policy for people with disabilities," says Donna DeStefano, the coalition's state director of advocates. "The coalition cuts across the disability, across age and agency staff. It's for anyone with disabilities. And there are lots of challenges that continue in terms of people's rights being abridged.

"We've got people watching public policy and watching what decisions get made. There's a constant need for vigilance. Things are constantly changing."

The mission statement continues: "The Coalition does this by organizing our members and member representatives into task forces and action groups that identify and research public policy issues, develop testimony and policy recommendations and encourage innovative solutions to public policy concerns; educating policymakers and the general public in an effort to improve public policies and programs that foster independence, productivity, integration and inclusion of people with disabilities; and encouraging people with disabilities and their families to advocate for themselves and coordinating grassroots efforts to support these advocacy efforts."

The TDC main office is in Nashville in an office building shared by several other healthcare-related organizations that deal with things like autism, independent living, mental health, and parenting. While all 45 member agencies are part of the coalition's board of directors, the TDC has an executive committee to help steer the organization and decide priorities.

"The staff here in Nashville doesn't have to do everything because we have 45 agencies in our coalition," DeStefano says, "so everyone is doing their part. It's not five people here representing all the people with disabilities, it's thousands of people representing them. That's what makes us unique."

While the organization works on many levels, its most basic service is through its individual advocates, the workers who deal with clients on a personal basis. Statewide the coalition's advocates serve nearly 900 individuals. In East Tennessee about 300 people are served. Each advocate has a case load of about 40 people.

Jeff Clayton is advocacy coordinator for the East region of Tennessee, ranging from Chattanooga to Harriman to Bristol. He says there's some overlap of duties performed by an independent support coordinator and an advocate, but it makes for a better support system.

"When you consider the amount of paperwork the support coordinators have, it's nice to have someone else help with things," he says. "We don't have the same constraints with paperwork as they do."

Copas says, "As support coordinators we probably spend 50 percent or more of our time on paperwork. The advocates I've worked with really do a good job helping us see the whole picture, seeing if there's something wrong, and they're really good about communicating with us. They're great to work with. It's another set of eyes and ears that really helps."

DeStefano agrees it's a good relationship.

"At some level they have to answer to their boss," she says of the ISCs. "The focus may get away from the person. If you're an independent, theoretically you're in a better position to advocate for someone.”

"It just depends on the situation. Dealing with different personalities and agency cultures, sometimes it requires someone else to create dialogue and negotiation. Having an advocate involved also helps provide some stability because support coordinators have a high rate of job turnover."

Like the coalition as a whole, these individual advocates serve in a watchdog/advisor role. They don't actually enforce the laws but provide assistance, education and referral wherever it's needed.

Beyond the advocates, the TDC promotes a series of campaigns including Brain Resources and Information Network (BRAIN) geared toward students with traumatic brain injury; Family Voices, which helps families who have children with disabilities as they deal with the healthcare system; and the VOTE! Campaign.

Keeping up with changing state and federal policies is a never ending job. The coalition, for instance, has a team meeting each week with TennCare officials to provide feedback and keep up with changes.

Legal issues range in scope from minor changes in wording of laws to major cases like the current State of Tennessee vs. Lane and Jones.

At issue in that lawsuit is whether Congress has the authority to require states to pay monetary damages for violations of Title II of the American Disabilities Act, which prohibits discrimination in the provision of public services.

Beverly Jones and George Lane, in unrelated incidents, were prevented from free access to Tennessee courthouses which did not provide for disabled people, and subsequently said they wouldn't enter the courthouses again until changes were made. They combined to file a suit against the state, but Tennessee's Attorney General said Congress can't make states pay damages for ADA violations.

DeStefano disagrees.

"These places have had 13 years with that law on the books, 13 years with a proactive duty to do it," she says. "If nothing is done to make them do it, what is there to assure they'll ever do it?”

"It's a landmark case. It's huge. It could rip apart the ADA. Or it could make it stronger. It's scary but it's exciting. This is advocacy at its prime."

The Tennessee Disability Coalition is also grappling with a state law that prohibits people with mental retardation from having sex, and therefore does now allow for sex education.

But, says Clayton, there is a high rate of sexual abuse among people with developmental disabilities, especially young females, and that rate drops dramatically with sex education.

"It's just if you can teach someone what's right and wrong," he says. "The law was put there for their protection, so if you remove it, you remove some of the protection. It's a matter of whether to give them the ability to express their sexuality in appropriate ways."

It's just another example of the many roles the Tennessee Disability Coalition plays. Sometimes it's helping an individual get his or her own house built after other members of the Circle of Support are running into roadblocks. It could involve helping an individual with disabilities find a long-lost family member after neither knew the other existed.

No matter what the stage -- courtroom or living room -- the coalition's duty is to look out for people with disabilities, and to make sure they have every opportunity they deserve.