The Advocate

April 2005-05-24

Sidetracked:

Aspirations and Dreams on Life Support

Mary finds 1 penny under her pillow when she wakes up on Monday morning.  On Tuesday, she finds 2 pennies.  On Wednesday, she finds 4 pennies.  So, on Wednesday, she has a total of 7 cents.

On Thursday, Friday, Saturday, and Sunday, Mary finds double the amount of money she found under her pillow the day before.  How much money does Mary have on Sunday?

Can you figure out this second grade math problem?

Mary is a petite young lady who plays chopsticks on the piano with the skill and personality of a Victor Borge. She can vary the pace of each hand, smiling at the small gathering of her friends, explaining in her succinct way “dueling hands.” She calls her rendition of “chopsticks” the “boogie-woogie.” It’s the only music she can play on the piano and she will play it over and over until the stampede to the snack table begins.

On “Saint Paddy’s Day” with a twinkle in her eye and paper shamrocks on her sweater, she asks if people can see the “shoo-loo-lee” under her arm. If you point to a shamrock and ask her what it is, she touches each leaf and says, “Father, Son, and Holy Ghost all one.” Wearin’ of the green is a non-negotiable on this High Holiday. She is proud of her Irish ancestry. She commands, admonishes, begs, and sweet talks her friends to wear green on “this day for the Irish.” If you are not wearing green, she puts her hands on her hips, looks you straight in the eyes and shakes her head. You’ve been condemned to bad luck, no pot of gold or, more importantly, no green cookies for you. Better go home and change into something green.

Since the age of 18, Mary has wanted to work in a restaurant, preferably an Irish restaurant. She doesn’t care about the job as long as it is an Irish restaurant. At the age of 24 she remains in a sheltered workshop for persons with mental retardation where she works at various jobs that are dependent on contracts and work available. Some days are spent coloring books because the workshop is between contracts.

When asked by her support coordinator what she thought was keeping her from working in a restaurant, she says, “Side-Tracked!”

It is so easy for all of us to get sidetracked on the job. Think about today. Have you been able to work on your “to-do” list and actually get things done or have the interruptions taken over making your “to-do” list a time management fantasy exercise?

Tasks come at us in unpredictable ways and at unpredictable times. A little job here and a big job there and before you know it your humming the “too-doo-do” funeral dirge. Ah, we’ll make a new list tomorrow.

Service delivery systems are the same. We start out the day trying to incorporate “person centered” approaches to helping people improve the quality of their lives where everyone, with encouragement and help, experiences the exhilaration of Rocky Balboa on the top steps of the Philadelphia Art Museum (thanks to the Tennessee Council on Developmental Disabilities for this visualization in the February 2004 newsletter, Breaking Ground). At the end of the day we sit on the third step of the Lost Dreams Museum sorting through files and paperwork, summons, and schedules.

So many of us in the service delivery system become trapped in a vicious cycle of required paperwork, demands from specialists and departments within and parallel to the service delivery system, reviews, investigations, meetings, and training to name a few. Meanwhile, the person’s dreams and aspirations are on life support until we can refocus our attention and resources. Often, refocus doesn’t happen and people’s dreams and aspirations stay trapped on paper filed in the collective unconscious repository called “Sidetracked.”

Mary died a few years ago without having the opportunity to achieve her dream. I wanted to remind myself that we share a path with many people whose dreams and aspirations have been sidetracked. I wanted to remind myself that I need to find a way to make good on our vision that people with mental retardation and developmental disabilities have the opportunity and needed support to contribute the fullness of their being to the wealth of human community.

If you haven’t already figured out the answer to the math problem, turn to page four of this newsletter. For those of you who solved this problem, you know the information “7-cents” sidetracks you from solving the problem. What other things real and imagined sidetrack you from helping people contribute the fullness of their being to the wealth of human community? What can you do to stay on the path or create a new one?

Waiting List Settlement Agreements

Nearing Conclusion

Recent information from Tennessee Protection and Advocacy is good news for people with disabilities waiting for access to supports and services. Please make sure to read the recommendations listed at the conclusion of this article and share the information with people and families you know.

Two settlement agreements have been tentatively agreed upon that provide access to services and supports for Tennesseans who are eligible for waiver services.

Summary of the Brown Settlement Lawsuit:

Provides for enrollment of up to 600 persons in a Self-Determination Waiver during 2004-2005. The waiver has an annual budget cap of $30,000 for an enrollee.

Provides for enrollment for an additional 900 persons in the Self-Determination Waiver during 2005-2006.

If enrollment does not begin in Self-Determination Waiver by July, 2004, provides that State will pay $500,000 per month in services for each month until enrollment begins.

Provides for enrollment of approximately 200 new enrollees in the existing Home and Community Based Waiver in 2004-2005.

Provides for enrollment of approximately 200 new enrollees in the existing Home and Community Based Waiver in 2005-2006.

For those on waiting list that are eligible for enrollment in the waiver but are waiting and not received services under the Family Support program, the State will provide up to $2,280 in a Consumer Directed Support Program on an annual basis per person, with a maximum annual expenditure under this program at $5 million. These services may be respite services, transportation, etc.

Provides targeted case management for those on waiting list that are eligible for waiver services but are waiting to be enrolled. Case manager will assist in accessing other services and plan for enrollment in waiver.

Provides for planning by parties for additional necessary services for persons eligible for waiver services that are on the waiting list until December, 2009.

Summary of the People First Lawsuit Settlement:

1. Requires outreach and education to persons who are potentially eligible for community based waiver services.

2. Requires the State to assess needs of eligible persons and plan for necessary services.

3. Removes prohibition in State interagency agreement that prevented the provision of waiver services to school age persons.

Recommendations: Arc members are encouraged to alert families and people with disabilities. The P&A news release recommends people do the following:

If the person is already on the waiting list, contact the DMRS Regional Office and begin the process to see if they are eligible for ICF/MR waiver services.

If the person is already on the waiting list, they may also want to contact their DMRS Regional Office to re-assess their category of need. This is IMPORTANT because those in the “Deferred” category will not receive consumer directed support.

If the person is not on the waiting list, contact the DMRS Regional Office to be placed on the waiting list and begin the process to see if they are eligible for ICF/MR waiver services.

We encourage you to share the information in this article with families you may know who are on the waiting list or would benefit by determining their eligibility. Interested individuals can call the East Regional Office at 1-888-531-9876 for additional information.

News From The Arc’s Early Intervention Program

Community happenings include:

Story Time at Local Libraries. In Johnson City, call 434-4458 to inquire about the Mother Goose for one year olds and Two’s Company programs in the mornings. In Elizabethton call 547-6360 to find out about their Tuesday morning story times for children 2-4 years of age.

Several community groups are available for parents of young children with or without disabilities.

Mothers of Preschoolers (MOPS) meets at Grace Fellowship Church in Johnson City on the first and third Thursday of each month between the hours of 9:00 a.m.—11:30 a.m. Call Denise Tynes at 239-9353 for more information and a schedule of events.

FRIENDS, a support group for families who have children with Down Syndrome will be holding coffee and crayon meetings in Bristol at the Wellmont Hospital in the Walnut Room. Please contact Marla McCloud at 245-2634 for more information.

The Northeast Tennessee Local Interagency Coordinating Council’s (LICC) next meeting is on Monday, June 7th at 9:00a.m. at the Boones Creek Christian Church in Johnson City. This is a community group made up of parents, doctors, service providers and other concerned citizens dedicated to improving the services that children with disabilities and delays receive in this area.

Saving Little Hearts meets at Ronald McDonald House in Johnson City in the Youth Room the first Monday of each month between 6:30 p.m.-7:30 p.m. Contact Sheila Hayes at 753-4780 or Regina Hawkins at 467-4268 for more information.

Kids Corner:

Spring is here and that means the beginning of rainy days and a lot of time spent inside with your young child. To make the most of that time, try this simple recipe with your 2 year old. If your child is younger, just put the dough in a zip lock baggie and let your infant squish the contents without the fear of him/her taking a bite.

Modeling Dough

Drops of Food Coloring

1 Cup of Flour

1 Cup of Water

1/2 Cup Salt

1 Tablespoon Cream of Tartar

1 Tablespoon Cooking Oil

Mix together all ingredients in a pan, cook on high, stirring constantly. Remove from the heat when dough has reached the correct consistency. Cool and store in a plastic baggie or container. Happy Playing! (From “Just For Two’s” by Brighter Vision.)

New Faces At The Arc Of Washington Co.

Lois Campbell & Carla Hamilton

Lois Campbell began work at the Arc in March and comes to us with 18 years of experience in serving individuals with disabilities. She formerly served as a senior support coordinator where she supervised several independent support coordinators, attended support plan meetings, worked with the individual’s circle of support to ensure goals were being met, and conducted home visits and face to face meetings with the individuals she served. “Lois is a great asset to us and has a wealth of experience in serving individuals with disabilities,” said Lorie Copas, Associate Director for the Arc of Washington County. “She has a huge heart and gets along great with her fellow co-workers as well.”

Carla Hamilton comes to us from Knoxville where she worked as an independent support coordinator. She received a Bachelor’s degree in Social Work and minored in Psychology from East Tennessee State University in Johnson City in May of 1990. Carla then worked as a social worker and then a case manager to individuals with mental illnesses for roughly 12 years before going into the field of independent support coordination.

“Carla has great organizational skills which is a must for any ISC and relates very well to the individuals she serves,” said Elizabeth Cox, Independent Support Coordination Manager in Greeneville.

Both women are great additions to the Arc team and will be working as independent support coordinators.

Greene County Skills:

A Partnership That Makes A Difference

Special Insert: April 2005-05-24

ARC of Washington County works with a number of provider organizations to form a circle of support around the people it serves. Among those providers is Greene County Skills.

According to Bill Schiers, executive director of the Arc of Washington County, GCS and the Arc jointly serve 83 individuals with disabilities in Greene County Tennessee.

“Greene County Skills was formed about 12 years after our organization began. Both organizations were started by a group of parents who were concerned about the well-being of children with disabilities,” Schiers says.

In 1973, GCS, like many organizations helping people who are disabled, was formed by a group of concerned parents. These parents of children with mental retardation wanted to find daytime activities that schools did not offer their children and activities for them when they were past school age.

A day program was established, which served 25 people and was funded by United Way and through grants from the Association of Retarded Citizens. Service provision expanded with the opening of a group home in the Rheatown area, followed by additional expansion in 1986 with the opening of two additional group homes.

A new funding source, the Medicaid Waiver program, supported the group homes and opened the door to additional services. GCS added a workshop program and foster care in private homes.

With the move toward downsizing of group homes in the 1990s, GCS received a special grant to close its large group homes. The people GCS served now could choose who they wanted to live with, where they wanted to live and how many people they wanted to live with. This new residential service was called “supported living.”

Soon after starting the supported living program, GCS began serving people who lived at Greene County Development Center. Many of them had lived in an institution for 25 or more years and never had experienced life in the community.

In 2002, a successful business venture with Phillips Consumer Electronics allowed GCS to purchase property in the heart of Greeneville for all of its program operations. The new facility, located at 130 Bob Smith Boulevard in Greeneville, opened in the fall of 2003.

GCS continues to expand its services in order to meet the needs of the people it serves in Cocke, Greene, Hamblen, Hawkins, Jefferson, Sevier, Sullivan and Washington counties. GCS primarily works for people with mental retardation and other physical or mental health disabilities, but through the Family Support Program, it is able to offer services to any individual who has a disability that substantially limits one or more life activities.

According to Margi Story, associate director of GCS, Mr. Morelock, a quiet young man who came to GCS in 1986, illustrates the level of care and concern people receive from GCS workers.

Mr. Morelock moved from Greene Valley Development Center to a group home that consisted of eight people. He began attending a developmental workshop during the day, but he seldom looked at the people who were talking to him. He simply followed the group and took part in whatever activity was planned.

The staff knew he had potential, but they hadn’t it on the best way to bolster his self-esteem. Turns out, a free gift certificate for karate lessons given to him by a direct support professional was the answer.

Although Mr. Morelock wasn’t sure what karate was, he was willing to give it a try. Through his karate lessons, he learned to focus on instructions, raise his head to listen to the instructor and learned self-discipline, which he applies to everyday living.

He gained the confidence he needed to enter karate competitions in which he broke boards and concrete with his hands and feet. He grew proud of his accomplishments.

Within a year of going to karate lessons, he became interested in working in the community rather than the sheltered workshop. He works at Hardees and Staples Office Supply, yet still finds time to go deep-sea fishing in Florida and Texas. His once narrow world is infinitely larger now.

GCS’ willingness to go the extra mile is one reason ARC of Washington County’s Associate Director of Support Coordination Lorie Copas says “GCS is a wonderful agency to work with.”

Copas and her staff monitor the services and support GCS provides for the people ARC serves. “We make sure they’re taken care of, they’re safe, they’re getting what they want and have the best possible health.”

According to Copas, GCS staff goes above and beyond what they’re asked to do.

“They are very person oriented, very family oriented,” she said.

This opinion is underscored by Melissa Shelton, ARC Independent Support Coordinator.

“The majority of my case load is with GCS, so I work with a little of everybody,” she said. “They’ve always treated me with respect and helped me out. If we need something, they’re all good about getting me the needed information.”

One person Shelton serves moved from a supported living into a family-based home with the help of GCS.

“He’s been there for a couple of years, and he’s doing very well,” she said. “He loves the family, the family loves him.”

Family Support Program Services Director Alisha Ricker said she works “harmoniously” with Linda Hensley, Family Support Coordinator for GCS.

“The family support program helps people with severe disabilities and their families in their efforts to remain together in their homes and communities,” she explained. “Basically, we work together to provide the family support program to individuals of District 1.”

District 1 consists of the counties ARC of Washington County serves — Washington, Carter, Hawkins, Johnson, Unicoi, Sullivan and Hancock — along with Greene and Hamblen counties, which are served by GCS.

Ricker said she and Hensley “meet and share information and work on articles together to provide outreach to the community. We share resources and information to try to help all the families, not just those in our particular counties. For example, if we help a family do something through a new agency or program, we’ll share that information.”

“GCS allows ARC staff to sit in on its scheduled trainings, including state-mandated trainings on subjects like CPR, abuse-neglect, behavior modification and medication training,” Ricker said.

Ricker and Hensley also car pool together to district council meetings and state council meetings. “We feel like the agencies benefit financially by carpooling to coordinators’ meetings,” she said. “Linda Hensley and her staff are always friendly and willing to help however they can.”

GCS believes in the “people concept,” Story says. Working together with ARC helps ensure goals are met and potential is developed fully.

“People with disabilities really hold a meaningful place in the community now, working at competitive jobs, making friends and able to do a lot of the things on their own. We have a lot of people who work regular jobs and pay taxes. “That’s all that people with disabilities have ever wanted is to be part of the community. They‘d rather be a part of rather than be dependent upon.”

According to Bill Schiers collaboration is key to helping people with disabilities and their families become part of the fabric of life in communities across Tennessee. “We are proud to be colleagues with Greene County Skills in meeting the life needs of the people and families we jointly serve. GCS staff at all levels are part a climate of cooperation and collaboration that exists between provider agencies, division of mental retardation services leadership and staff, and advocacy agencies in East Tennessee. There is a palpable spirit of respect and cooperation among agencies in East Tennessee.”

“Without trusting and committed partnerships people with disabilities are often forced to confront system barriers that prevent them from contributing the fullness of their being to the wealth of human community. GSC staff work hard to make sure system barriers do not interfere with helping people with disabilities belong in important ways to community life.”

“We believe our mission is to create partnerships that foster nurturing communities where people with disabilities can live their vision of a valued life,’ Schiers said.

“In many daily acts of collaboration with us and others, staff of Greene County Skills live this mission.”