The Experience Of Dying:

Does Everyone Have A Right To Know

Jennifer has been Alice’s independent support coordinator for three years. She has grown quite fond of Alice and this feeling is mutual. On weekends it is not uncommon for Alice to call Jennifer at home to ask what she has planned for the weekend. She is a quick talker and sometimes she becomes bored with people who cannot answer her rapid questions or take interest in things that are important to her. She has a piercing gaze and this along with a large muscled frame sometimes scares people who don’t know her. She enjoys Jennifer’s visits and likes to tell her the important things that are happening in her life. Some call Jennifer and Alice the “odd couple” because Jennifer is petite and Alice is, as her brother calls her, “robust.” To which Alice replies, “I ain’t no robot!”

At age 42, Alice, with help from Jennifer and staff from her provider agency applied for and was hired for the first job of her life. She has a part-time job working for an office cleaning company. The owner of the cleaning company is a distant relative of Jennifer. She has been employed for 2 years and according to her supervisor, she is a good worker. “She works fast and you never have to re-do anything she cleans,” says her supervisor. She tells everyone how much she enjoys her work and the best part is spending her extra money for electronic games, jewelry, and pictures for her room. She sometimes goes to the movies or shopping with two of her friends from the cleaning company. They enjoy window shopping at the mall and eating lunch at different places.

She takes her job seriously and on occasion she engages in behaviors that cause concern for her supervisor. During the first month of employment she was cleaning her part of the office complex when an employee came in to work late. Alice told him he had to leave until she cleaned the office. When he said no, she ran at him with a mop. The cleaning supervisor smoothed over the incident but Alice insisted that he was “making my floor dirty.”

A few months later, an employee brought her children to pick up a check from her desk. In a loud voice, Alice began lecturing the mother for bringing the children into a dirty office. The mother was frightened and called the police on her cell phone because she thought she was being threatened. Again, the supervisor intervened and as the supervisor said, “All’s well that ends well.”

There haven’t been any incidents for over a year on the job but occasionally Alice slaps one of her residential staff. This occurs most often if staff tells Alice “No” in an angry or intense manner. Some staff report they feel “nervous” around her. The residential supervisor says Alice can be intimidating at times.

When Alice was a resident of a developmental center she had a reputation for hurting others, destroying property, and sometimes hurting herself. Her record is filled with behavior programs that were attempted, abandoned, and/ or revised to reduce the behavior reports labeled as “maladaptive.” Since her move to the community where she lives in a house with one other person, her violent behaviors have been greatly reduced and she is no longer in need of, as she calls it, “that behavior stuff.”

A few months ago, Alice found a stray malnourished kitten in the back yard. With the help of staff she took it to the animal shelter where it had to be “put to sleep with God” as Alice describes it. She has been contributing $1.00 each paycheck to the animal shelter, and she likes see the animals when she takes her contribution to the shelter.

The past few months, Alice lost a lot of energy and her color looked jaundiced. She continued to work, however, she often slept 12 hours and began to express feelings of pain in her side and stomach.

Last week, after tests, the doctor told her parents that Alice had a form of cancer that would shorten her life. There was no cure and it was expected that she would die in the next three months. The doctor recommended she not be told and her parents agreed.

At a support meeting with staff and Jennifer, the parents announced findings from the doctor and told staff they didn’t want Alice to know she was dying. They said they were afraid she would be too upset and “end up hurting someone.” They wanted everyone to agree they would not tell her she was dying.

What would you say to Alice’s parents and the support team if you were Jennifer?

Please share your thoughts with us. We will pick a sample of written responses and publish them in a future newsletter.

The Respite Center And The Johnson City Area

United Way:

An Answered Prayer To Families In East Tennessee

The Arc of Washington County’s Respite Care program has been helping children with disabilities and their families for almost twenty years. Funded by the Johnson City Area United Way, the respite center is located at Keystone Presbyterian Church in Johnson City. It is opened every Friday from 3:00 p.m.—10:00 p.m. Keystone Presbyterian graciously donates the space which allows the Arc to spend funds on things other than rent. The grant from United Way provides funds for staff wages, food and supplies, toys and basically whatever it takes to make the program worthwhile for families of Washington County.

The respite center allows moms and dads to drop their children off for a few hours each week and run errands, have a “date night” or just rest quietly at home until time to pick the kids up at the center.

While parents are getting rejuvenated, children have the opportunity to spend time with other children with and without disabilities while working puzzles, doing arts and crafts activities, watching movies and more.

The funding from the JC Area United Way has allowed the respite center to remain open and serve the families of our area for years. It is an answered prayer for the families served by the Arc. Parents have been quoted as saying, “The respite program has given us a break and allows us to be without the worries of letting someone who isn’t qualified watch the kids.” Another parent responded by saying, “The availability of the respite center has given our children the opportunity to be with other kids with special needs as well as their siblings who do not.”

Thank you United Way for your compassionate response to the families of East Tennessee.

The JC United Way recently completed its annual fundraising drive with huge success. The agency reached its goal of $1,460,000 in large part from donations from individuals interested in furthering the many causes of the United Way. For the fourth consecutive year, the employees of the Arc of Washington County reached their goal of 100% participation in contributions toward the United Way’s fundraising campaign. Thanks to all staff who made this contribution possible. Special thanks to Tabitha Edwards, Malessa Fleenor, Terrie Grubbs, Sheri Peets, Susan McKinney, Sandy Ray, Melissa Shelton, and Tonya Stowers who gave 1 hour’s pay each month for the next year to help The Arc reach its goal, which in turn, helped the United Way reach its goal.

For information on the Arc’s respite care program, please contact Malessa Fleenor at (423) 928-9362 or email her at malessa@arcwc.org.

Monitoring System Helpful For Arc’s Little Folks Program

Tennessee’s Early Intervention System and Early Intervention Agencies operate under the requirements of Individuals with Disabilities Education Act (IDEA) and Tennessee State Board of Education (TNSBE) Rules and Regulations for providing supports and services to eligible infants and toddlers and their families.

The Arc of Washington County’s Little Folks Early Intervention Program is currently participating in the Part C Continuous Improvement Monitoring Process to ensure that the agency is in compliance with these mandated regulations. Tennessee’s mission is “to develop and implement a state monitoring system that guides compliance with the law, informs all stakeholders, and provides quality services with improved outcomes for children and families.”

There have been some changes from the previous monitoring system, so the Little Folks staff and Bill Schiers, the executive director, have attended several local trainings provided by the Tennessee Department of Education so that these new requirements can be completed.

In addition to attending these trainings, a steering committee has been assembled to help complete the Little Folks’ Self-Assessment document, so that input can be obtained from a variety of sources, including community/family members.

According to the TN Department of Education training materials, “The goal of this collaboration is quality services and supports and ultimately improved outcomes for children and families in Tennessee’s Early Intervention System. The Steering Committee will develop a snapshot of the District/Early Intervention Agency; identify and address areas for targeted program improvement; and establish a starting point to evaluate future progress.”

Little Folks will be working within the structure of this Steering Committee in order to:

Complete the Continuous Improvement Monitoring Process (CIMP) Self-Assessment,

Develop and implement a Program Improvement Plan (PIP), and

Track and report progress made through the implementation of the PIP in the Annual Performance Report (APR).

If you would like further information on the monitoring process and/or any of its components, you may contact Carol Matherly or Jennifer Moreau, Arc Early Intervention Specialists, at (423) 434-1790.

A Special Thank You To Sprint!

The children and their families receiving services from the Little Folks Early Intervention Program and the Little Folks’ staff would like to extend a heartfelt “thank you” to the employees of Sprint for the Sprint Santa Party that was held on December 14. Even though it was a cold, blustery winter day, several children and their families came to visit Santa, and each child received a picture with Santa, a treat bag filled with goodies, and a toy from Santa’s workshop. Thanks again to Santa’s helpers at Sprint for providing an afternoon of holiday fun!

Member Profile: Malessa Fleenor

People Who Make A Difference

Malessa Fleenor began work with the Arc of Washington County in early 2004 and since then has learned the ins and outs of independent support coordination. Her background experiences along with her extensive knowledge of the system have given Malessa the necessary skills to be successful in the field of support coordination. “She has great people skills and is a hard worker,” said Lorie Copas, Associate Director of Independent Support Coordination. “She has been a great addition to our team and works hard to advocate for the individuals she serves.”

Malessa recently applied, interviewed and was selected for the position of Associate Director of Program Services. She is the agency liason for Johnson City Area United Way and coordinates the Arc’s family support and respite services.

“This is a wonderful opportunity for us to receive the skills Malessa has acquired as an independent support coordinator,” said Bill Schiers. “We are fortunate to have her in this important role.” Her positive attitude will serve her well as she leads the Arc’s respite and family support programs, working with individuals with disabilities and their families to ensure they receive the resources they need.

Before coming to the Arc, Malessa graduated from Tusculum College with a management degree and worked at a local provider agency where she oversaw the daily implementation of individualized support plans for people with disabilities as well as assisted them with learning daily living skills and work habits.

Away from her duties at The Arc, Malessa spends time with her husband, plays the piano and had her first piano recital recently.

Her friends and co-workers at The Arc wish Malessa well as she takes over her new duties as Associate Director of Program Services!

Special Insert: January 2005

Arc Chapters In Northeast Tennessee:

Supporting The Lives Of Persons With Disabilities

The Arc Chapters, whether starting up or steadily building their supports and services, share one common goal: helping to build and nurture communities where people with disabilities are welcomed and valued.

According to Walter Rogers, executive director of The Arc of Tennessee, “the six Arc chapters in Northeast Tennessee are an important part of a network of twenty-four local Arc chapters across the state of Tennessee.”

The word “Arc,” formerly known as “ARC” is the glue that binds together the shared concerns of The Arc US, The Arc of Tennessee, and local Arc chapters within Tennessee. The Arc US works to foster research and improve disability policy at the national level, The Arc of Tennessee builds collaborations to help empower families and to impact disability policy at the state level, and local Arcs such as those highlighted in this article seek to help people with disabilities and families lead inclusive lives in their home communities.

Within upper East Tennessee, six Arc chapters provide services, advocacy supports, and/or much needed referral and information to persons with disabilities, their family members, and people who make up the greater community in which they live.

The Arc of Washington County

“The Arc of Washington County, chartered in 1961, enjoys the benefits of a long history and a dedicated support base. Today, the chapter serves more than 700 people in 13 counties with a membership of 1,070 people in Northeast Tennessee,” executive director Bill Schiers said.

Thirty staff provide services including a respite center for children of persons with disabilities supported by the members of the Keystone Presbyterian Church in Johnson City and funded by The Johnson City Area United Way, “Little Folks” early intervention program funded by the Tennessee Department of Education, & independent support coordination, in-home respite, and family support services funded by the Tennessee Department of Mental Retardation Services.

The Arc of Sullivan County

In operation since 1995, The Arc of Sullivan County provides advocacy and forums for information groups. The chapter has about eighty dues paying members from all areas of Sullivan County as well as adjacent counties and Virginia. It is an all volunteer organization that holds monthly meetings the third Monday of every month at 6:45 p.m. at Frontier Industries in Kingsport. The chapter provides a much needed advocacy by informing families of persons with mental retardation or developmental disabilities how and where services and supports may be obtained. The local meetings bring together people who have worked to obtain services from the state for their family member and other people who are seeking help for their family member.

According to John Umberger, president of The Arc of Sullivan County, the monthly meetings are designed to inform members in attendance. “We’ve had speakers from the Department of Mental Retardation Services. We have speakers from any group that has dealings with the people we advocate for. We invite programs from various groups that have an effect on serving our people,” he said.

In addition to providing information and support, the chapter works with a project at Fort Shelby Towers in Bristol. “People Place has a volunteer director four days a week,” Umberger said. “They have activities for the people living in the tower, which is a public housing location for the city of Bristol. Anyone in the county who wishes to take part in these activities is invited.”

The Arc of Claiborne County

Claiborne, Grainger, Hancock and Union counties fall under the umbrella of The Arc of Claiborne County. The Arc of Claiborne County serves 150 people and has 30 Arc members. According to Executive Director Scott Ferguson, the chapter, an offshoot of REACHES, was founded in 1988 and actually started up in 1989.

“Services provided by the chapter include day services, supported employment, day habilitation services, early intervention services, job placement, vocational training, residential services and family support,” Ferguson said.

“We also contract with the CACFP food program to provide a hot meal in the Arc cafeteria. A lot of our folks are on a limited budget, and 99 percent of those are on a free meal program,” he said. “We’re able to provide breakfast, lunch and snack each day ... which is a tremendous nutritional aid.”

“The Arc of Claiborne County works in conjunction with Arc of Washington County, which provides support coordination for them,” Ferguson said.

Ferguson sees the chapter’s role as one of advocacy to ensure that people get the services they need. “It’s figuring out how to help families understand what rights and services they do have,” he said. “And helping to have a grass-roots effort here locally to keep them aware of what is available.”

The Arc of Carter County

Although a twelve member Arc may seem small, The Arc of Carter County enthusiastically builds networks to help many parents living in Carter County and others who call for referral information.

Bubbling with enthusiasm and commitment to families, Teena Bradley, Carter County Arc chapter vice president, says members are called to provide referrals to services and families often call requesting help to navigate and negotiate services for their children. Arc members try to help families negotiate the barriers, obstacles, and lack of information that prevents them from learning how to best use available resources and seek new resources. Parents are often more responsive when communicating with a parent who is in or has experience with the service system.

“In addition to referring families to services and supports they need and want, we often help families by attending IEP meetings in schools and circle of support meetings within agencies providing services to their children,” Bradley said. “Some parents often need help expressing their concerns and needs to service and education providers; and, service providers sometimes need assistance understanding the needs the parents are trying to communicate.” The Arc of Carter County provides those supports to parents.

“The biggest need in Carter County,” according to Bradley, “is more respite supports and additional advocacy supports to help parents negotiate for needed services.” Although assistance in negotiating for services is needed, it is known by all Arc members that negotiation can only occur if a person is approved to receive services.

The Arc of Greeneville

One of the new Arc chapters forming in upper East Tennessee is The Arc of Greeneville. Organizer Jeanne Thomas said she has filed for tax-exempt status and the charter has been filed. She hopes the group will hold its first meeting in January.

The board is made up of community agency members, parents of consumers and people who represent Greene Valley Developmental Center.

“We’re trying to get input from agencies,” Thomas said. “Our whole goal is to get coordinated with other agencies. We want to work in coordination with Arcs in upper East Tennessee.”

Thomas is the mother of a 33-year-old son who has developmental disabilities. He participated in a pilot project for supportive living in Tennessee, but the family moved to Florida. When they moved back, nothing was available to him.

“Since we returned to Tennessee two and a half years ago, he’s been sitting at home doing nothing,” Thomas said. “I need to get him into services for himself and for me, too.” Thomas, a nurse, has learned to navigate the social services system in other parts of the country, but she is finding obstacles to receiving services in Tennessee.

“If I have this knowledge and I’m hitting brick walls, what about parents who have no idea what to do?” she said.

The Arc of Hamblen County

Described by Brad Hall, acting president of The Arc of Hamblen County, as “a program of many,” members work with all age groups, fueled mainly by volunteer power. The Arc of Hamblen County has been in existence since 1969 and has 65 chapter members comprised of both consumers and volunteers.

In the summer, the chapter sponsors a four-week summer enrichment program for 4 through 22 year olds. “It runs five days a week, and we offer some academics, crafts, art and recreation,” Hall said. “It is strictly funded through The Arc.”

Hall hopes to keep growing programs that help improve the lives of persons with disabilities and to adopt new ones. And they want to get the word out that help is available. “If they need help,” Hall said. “We’re here.”

According to Hall the biggest needs in Hamblen County are jobs and supported living services. “This upcoming year 15 to 20 students will graduate from high school. At this point only two have jobs,” Hall said, “Approximately five young adults need supported living services each year.”

Just as the various chapters share a common goal, they also share a common frustration: the number of people waiting for services.

Elderly parents and new parents entering the service delivery system for the first time share concerns about the availability of services. “The biggest need communicated to us by parents is the need for services to help families whose children are on the waiting list. Many languish at home without the connections and stimulation of contact with others most of us take for granted when we work and contribute to community life,” according to Schiers. “Many families who are caregivers are concerned about what the state will be able to provide for their handicapped son or daughter when they are no longer able to do so,” Umberger said.

Recent information from The Division of Mental Retardation Services indicates that in November 3,611 people are waiting for services in Tennessee. The number of people requesting services grew an average of 92 people each month for the period July through November 2004. During the same period an average of eight people per month were accepted for services.

During the writing of this article, information provided by Walter Rogers, executive director of The Arc of Tennessee confirms the removal of the moratorium of HCBS Waiver funded supports and services effective January 1, 2005. The moratorium has been in effect since 2001. In addition to the removal of the moratorium on Waiver funded supports, a new Self-Determination Waiver has been approved to begin January 1, 2005.

Gary Houseplan, the managing attorney for the Tennessee Protection and Advocacy, Inc. could be speaking for parents, persons with disabilities, and the many partners and colleagues who make up the Tennessee service delivery system when he writes in a recent email, “I cannot think of a better present that signals hope for those persons and families that have waited for services for so long.”

These approvals will increase the ability of DMRS Commissioner Steve Norris to reduce the waiting list and provide much needed relief to people and families.

“We are very supportive of and grateful for the hard work done by Steve Norris and his staff to obtain the removal of the moratorium and obtain approval for new Waivers to help people and families,” Schiers said. “The development of new Arcs in Northeast Tennessee brings much needed supports to families of persons with mental retardation and developmental disabilities,” Schiers said. “We hope that as many Arcs as people who want to join them will be formed. To help our colleagues, individuals who would like to transfer membership from our Arc to any other Arc may do so by calling us and asking for a transfer.” “Walter Rogers, the executive director of The Tennessee Arc has been very helpful in giving support to the growth of our Arcs in Northeast Tennessee. We are very appreciative of his efforts,” Schiers said.