BREAKING GROUND A Publication Of The Tennessee Council On Developmental Disabilities The Breaking Ground Employment Series Part II [ 5 ] Charlie’s Bike [ 11 ] Low Tech Assistive Technology [ 18 ] Tennessee Spotlight Tennessee Disability Pathfinder has phone, Web and print resources in English and Spanish to connect the Tennessee disability community with service providers. Referral services, free of cost, are provided to persons with disabilities, family members, service providers and advocates. Pathfinder is a joint project of the TENNESSEE COUNCIL ON DEVELOPMENTAL DISABILITIES and the VANDERBILT KENNEDY CENTER FOR EXCELLENCE IN DEVELOPMENTAL DISABILITIES. CONTACT INFORMATION This free publication is produced six times a year by the Vanderbilt Kennedy Center for Research on Human Development and Kent Communications Group. Subscription requests, change of address, and submissions for possible publication should be directed to: Breaking Ground, Council on Developmental Disabilities, 404 James Robertson Parkway, Suite 130, Nashville, TN 37243. phone: 615-532-6615. E-MAIL: breakingground@vanderbilt.edu. Tennessee Council on Developmental Disabilities Grant Number 1-03999-1-0. Authorization Number 339371, July 2001. 5,600 copies. This public document was promulgated at a cost of $.46 per copy. Contents 3 The Benefits of Work 4 How Community Work Incentives Coordinators Help Social Security Beneficiaries 5 Charlie’s Bike—A Thank You Letter to the Family Support Program 6 The Status of Tennessee’s System for Supporting People with Intellectual Disabilities to Be Employed 10 Book Review—From Heartache to Hope 11 Book Review—The Autism Checklist 11 Low Tech Assistive Technology 12 Understanding the Needs for Disability-Related Services Throughout Tennessee 13 National Disability Data Resources 14 2010 Elections—Strength in Numbers 16 News from Pathfinder 18 Tennessee Spotlight CONTACT INFORMATION This free publication is produced six times a year by the Vanderbilt Kennedy Center for Research on Human Development and Kent Communications Group. Subscription requests, change of address, and submissions for possible publication should be directed to: Breaking Ground, Council on Developmental Disabilities, 404 James Robertson Parkway, Suite 130, Nashville, TN 37243. phone: 615-532-6615. E-MAIL: breakingground@vanderbilt.edu. Tennessee Council on Developmental Disabilities Grant Number 1-03999-1-0. Authorization Number 339371, July 2001. 5,600 copies. This public document was promulgated at a cost of $.46 per copy. THE BENEFITS OF WORK By Bill Duncan Matt Kerbs was born on February 10, 1978, in Austin, Texas. After his birth, Matt was rushed immediately to the intensive care unit. There was not much hope that he would survive, so they had him baptized before he was two hours old. The doctor on staff recommended he be put in an institution to receive care. His parents, Pam and Terry, were told he would never walk, talk or think. But Matt was their baby so, when he was well enough, Pam and Terry took him home. Matt started talking around 18 months old but did not walk for another year. The three brain surgeries during his first six months of life had taken their toll. Matt was put into an “infant stimulation program”. He also received physical therapy, speech therapy and occupational therapy. From ages three to five, Matt was the March of Dimes poster child for the Knox County, Tennessee, area. He was on posters, TV and in the newspaper. Matt has a visual disability and cerebral palsy, and has difficulty with reasoning skills. Matt attended a special school until he was nine years old. When he was five, he was part of a University of Tennessee pilot program for Kindergartners with disabilities. The idea was to assist students majoring in special education to gain experience interacting with children with disabilities. At age nine, he was given the opportunity to attend classes at a “typical school”. He did well and, when he was 12, began attending the school system in his own district. In high school, Matt was once again put into a special class. Two weeks after school started, the special education teacher phoned his parents asking for their permission to allow him to join other students in remedial classes. Matt adapted so well that he paved the way for others who came after him. Before graduation, Matt was asked, by one of his instructors, what he wanted to do with his life. Matt stated that he wanted to work for a country western radio station. This teacher told him he would never be able to do that. He graduated from Farragut High School with a special diploma and a standing ovation from the class of 1998. We at the Cerebral Palsy Center (CP Center) began working with Matt in February of 1998 in our Supportive Employment program. Matt was brought to our facility by Knox County Schools about three days per week. We began to learn more about Matt and what he liked to do, and conducted three job site assessments with him—at Goody’s Department Store, Kinko’s and the Epilepsy Foundation—in order to see what type of supports he would need. After a three-month job search, Matt was hired at Dick Broadcasting in August of 1998 as an Assistant in the Promotions Department. Matt developed many friends at the station, where he organized the supply closet, folded station t-shirts, packed promotional materials, restocked the Coke machine, ran errands and performed other miscellaneous tasks. He held this position for 10 years. “Matt has been a joy to have in the office,” said Ashley Teague, WIVK promotions director of Citadel Broadcasting. “He always had a smile on his face when he came to work and loved to talk sports. We could always count on him to know the latest sports updates surrounding UT football.” Matt has always wanted to stay busy, so the CP Center began to look for another job for him. While still employed at the radio station, Matt began working for the UPS Store in September, 2002, distributing mail to the post office boxes. In 2006, Matt and his family talked with us about developing a job for Matt where he could work more hours. That led to a position at a local catering firm, Middlebrook Gardens. Brenda Beaty of Middlebrook Gardens writes, “Matt always had a pleasant smile and a big ‘Hello’ for everyone. Matt is a hard worker and very diligent in everything he does. If the world could have Matt’s attitude, it would be a far greater place.” Matt’s current job is at Parkwest Hospital, where he is working 30 hours a week. Matt sets and buses tables, does some light cleaning and greets guests in the dining area. He is well into his second year of work at the Boulevard Bistro at Parkwest Medical Center. “Customers miss Matt when he’s not here,” said John Foust, RD, retail manager at the Boulevard Bistro. “They really enjoy talking UT football with him. Matt is one of those employees that you truly know when he is gone, because he does such a good job.” Matt has been the model of community inclusion. He eats lunch with friends from work, and participates in parties and birthday celebrations. He sends cards and gifts on special occasions and, of course, has friends over to watch UT football. Matt enjoys not only his job but all of the benefits that go along with it. He said the great folks he works with are a wonderful benefit, as is helping out customers who are less fortunate than him. He also appreciates working inside and not out in the weather. His favorite benefit of all is getting to eat lunch—free! Although 401K and major medical were not in Matt’s personal list of favorite perks of the job, he does receive these benefits, along with merit raises. Best of all, Matt started the job well above minimum wage. We at the Cerebral Palsy Center have been very blessed to be a part of Matt’s life for the last 11 years and look forward to working with him for many more! Bill Duncan works part time as an employment specialist and job developer at the Cerebral Palsy Center. Mike Weaver, employment specialist, and Tammy Cook, team leader and employment specialist, also contributed information for the article. HOW COMMUNITY WORK INCENTIVES COORDINATORS HELP SOCIAL SECURITY BENEFICIARIES By Beth Hopkins If you are a person with a disability who receives Supplemental Security Income (SSI), seeking and gaining employment can present many challenges, including navigating the complex system of Social Security benefits. How do you make sure to retain your SSI benefits during the transition to employment? Would additional earnings from your new job mean you would have to forego benefits entirely, or could you still receive some Social Security income? And what if you lose your job? Do you have to reenter the maze of red tape to reclaim your SSI benefits, or is there an easier way? Most people who receive SSI would agree that understanding their benefits—and how those benefits change—is complicated. Introducing a job as a possibility of additional income can further confuse matters. Today, because the recession created an unpredictable job market, plans must be in place in case employment is lost unexpectedly. The Work Incentives Planning and Assistance (WIPA) program has been around since 2000 to help Social Security beneficiaries understand these and other matters related to receiving and keeping benefits during their entry into the workforce. Within each WIPA program, Community Work Incentives Coordinators (CWICs) work directly with SSI or SSDI [Social Security Disability Insurance] beneficiaries to help them to understand their benefits, work incentives, and how their benefits may change when they are employed. The Tennessee Disability Coalition, in partnership with the Center for Independent Living of Middle Tennessee, provides WIPA program services to all 95 Tennessee counties. Since the inception of the WIPA contract two years ago, over 1200 beneficiaries have received intensive services. The services provided to beneficiaries through CWICs in the State of Tennessee have three foci [Benefits to Work: Tennessee Disability Coalition (http://www.tndisability.org/coalition_programs/benefits_work)]. • Work Incentives Planning Services: CWICs establish a written work incentive plan for the beneficiary. This includes outlining available employment options and developing necessary support services, which may include referral to Vocational Rehabilitation (VR) or an Employment Network, when appropriate. CWICs conduct periodic follow-up with beneficiaries to monitor progress and any needs that may arise. • Work Incentives Assistance Services: Assistance is offered to beneficiaries to help them select the best incentives to use as they enter or return to work. Information and referral services also are offered (regarding Ticket assignments, VR or Employment Networks). The assistance services most often build on the planning already done by the CWIC with the beneficiary, with the CWIC monitoring and managing the incentives as needed. • Outreach: Benefits to Work offers community-based work incentives seminars to people with disabilities to help them better understand work incentives, and the options available to help them acquire gainful employment. With all three components of the Benefits to Work program, support is provided that is specific to the beneficiary and his or her needs and employment goals. For more information, contact Cathy Randall, project manager, at 423-956-5919 or Toll Free at 1-888-839-5333 Beth Hopkins has a Master’s degree in Nonprofit Organizations and recently completed an internship with the Council on Developmental Disabilities. CHARLIE’S BIKE A Thank You Letter To The Family Support Program My words cannot express the gratitude I have for making a little boy’s wish come true today. My son, Charlie, has never asked for much. Due to his condition, he cannot play games like many of his peers, or run or ride a bike like his friends. During the Summer, the neighborhood kids would ride their bikes by our house and wave while Charlie sat in his wheelchair. One day, at physical therapy, a little girl with cerebral palsy came out of a room riding a bike. Charlie looked at me and asked me if he could ride a bike too. I told him it was up to his physical therapist. So we gave it a try. And this little boy did it. I decided to look for a bike for Charlie, a special adapted bike. I came across the information on AMBUCUS—a non-profit service organization consisting of a diverse group of men and women who are dedicated to creating mobility and independence for people with disabilities. I e-mailed the company, hoping to see their bikes in Nashville just to see if my son could ride one like his friends in the neighborhood. God answered my prayer. An AMBUCUS company representative called to say, “Our trailer of bikes is coming through Nashville next Wednesday or Thursday. Would you be interested in having an event?” (I felt like I was in the twilight zone for a minute.) I jumped on it, and said, “Thursday.” Today was the day of the event. Today my son Charlie rode an adapted therapeutic bike. I cried tears of joy. I looked at my mom and said, “I hope that [Family Support] grant from The Arc [of Davison County] comes through. Charlie loves this bike, and he can ride it.” When I turned around, there was Ms. Hildebrand with a mile wide smile. Yes, Charlie got his adapted bike today! Thank you Ms. Hildebrand. Thank you Family Support. Today you were my son Charlie’s angel. Sincerely, Donna & Charlie Jenkins TENNESSEE FAMILY SUPPORT ALLIANCE The TENNESSEE FAMILY SUPPORT ALLIANCE is a grassroots organization comprised of citizens who care about the TENNESSEE FAMILY SUPPORT PROGRAM, and who support its continuance as a necessary component of Tennessee’s service array for families who have loved ones with disabilities. We do not have a formal organizational structure, but we do have a list of individuals who have volunteered to serve as representatives of various groups. Membership in the Tennessee Family Support Alliance is open to everyone. The purpose is to voice our endorsement of one of Tennessee’s most valued and effective statewide programs serving persons of all ages with a variety of severe disabilities and providing essential support to their families and caregivers. Because of the current economic situation, problems with the reliability of the State’s revenue sources, and the pending collapse of many of Tennessee’s vital health and human service initiatives, this important program is under imminent threat. We actively solicit comments and discussion from the general public, as well as communications from individuals and families who use the program. Visit www.tnfamilysupport.org for more information or to contact the Alliance. THE STATUS OF TENNESSEE’S SYSTEM FOR SUPPORTING PEOPLE WITH INTELLECTUAL DISABILITIES TO BE EMPLOYED By Robert B. Nicholas, Phd In 2001, an interagency effort was initiated in Tennessee to expand the number of people served by the Division of Intellectual Disability Services (DIDS) who are employed. The initiative resulted from a challenge by the Council on Developmental Disabilities (CDD) to provide community employment to 25% of the people served by DIDS in the community. When the challenge was accepted, DIDS, the Division of Rehabilitation Services (DRS) and CDD agreed to a partnership to achieve this goal. The initial step by the partnership was to establish the Tennessee Employment Consortium (TEC) to serve as the steering committee for the initiative. TEC participants include representatives from the partners, provider agencies, independent support coordination (ISC) agencies, advocacy organizations, families and individuals. TEC’s mission is to propose policies and practices that will expand the number of people served by DIDS who are employed and to expand the employment service capacity of provider agencies. The partners funded consultants to facilitate TEC and provide information on best practices nationally. In addition, the partners provided $150,000 annually to fund employment expansion efforts. Shortly after TEC was established, The Arc of Tennessee proposed that it recommend the adoption of an Employment First! policy by DIDS. The core of the proposed policy is the requirement that employment be the first day services option considered for anyone served by DIDS in the community. The language in the policy emphasizes the capability of people with intellectual disabilities and the benefits of employment for enriching people’s lives. The overall objective of the policy was to make employment the systematic expectation and not the exception. Based on the enthusiastic endorsement of the Employment First! policy by TEC, the DIDS Deputy Commissioner approved it as Division policy. Since then, the employment initiative has been known as Employment First! Tec Efforts 2001-2009 Since its establishment, TEC has been the hub of efforts to foster the employment of people served by DIDS. It has served as the locus for a particularly effective partnership between DIDS and DRS to develop an integrated process and braided funding strategies for job placement and retention. The additional resource of input and support of stakeholders has facilitated the development of creative and effective policies for the coordinated delivery of employment services. TEC received national recognition in 2007 when the Institute for Community Inclusion named TEC an innovative practice in the employment of people with disabilities. The following are examples of key policies in the DIDS and DRS systems that were developed by TEC. Definition of Employment TEC developed a definition of employment for DIDS stipulating that the job is in a community location and that the person must be included in a workplace. It allows for group employment and employment at sub-minimum wage. The definition specifically excludes work in a sheltered workshop. Because this definition drives practice and funding in the service delivery system, TEC continually interprets the definition and considers amendments to ensure a quality employment experience for people served. Data and Research In response to the absence of employment data on people served by DIDS, TEC developed a stand-alone employment data collection process. Annually, each DIDS provider and ISC agency is asked to update a data sheet on the people they serve. The updated data is compiled into an annual report, which contains the number of people served who are employed, the percentage of the total people served they represent by region, class status and provider agency, wages and hours worked. The report also contains the number of people who are not employed but who want to be. The TEC Employment Data Update has provided a regular assessment of progress in expanding the number of people served by DIDS who are employed. The baseline data collected in 2002 indicated that 1108 adults served by DIDS in the community (18.4% of all people served) were employed. The 2008 data update indicated that 1590 people, or 20.1% of the total, were employed. While the 1590 people who were employed represent a 43.5% increase since the start of TEC, TEC has not yet succeeded in achieving its goal of having 25% of the people served by DIDS employed. TEC also has used its consultants to initiate original research on issues pertaining to systems planning. This research has included reports on the relationship between employment and a decrease in challenging behaviors, job coach salary structures at provider agencies, and reasons for job loss. Grants and Stipends In its first three years, TEC offered grants to provider agencies to build employment service capacity and move additional people into employment. The CDD offered $150,000 each grant year during the first three years of the project and a portion of those funds was used for the grants. Due to cumbersome grant regulations and in an effort to provide incentives to a broader range of provider agencies, TEC changed to a process of providing stipends to agencies for each person moved through DRS services and into employment with DIDS funded supports. This began in the fourth year, with CDD, DRS and DIDS each contributing one third of the stipend program money. Job Coach Training TEC recognized from the beginning that employment opportunities for people served by DIDS are contingent upon the quality of available supports. Accordingly, with the assistance of consultants from the DIDS West Region, TEC developed the “Winners at Work” job coach training curriculum. Based on a TEC recommendation, DIDS requires all job coaches supporting people funded for employment based services to take the Winners at Work training and pass a test on its content. TEC also funded the University of Tennessee Center on Disability and Employment (UT-CDE) to train a network of certified Winners at Work trainers statewide. In 2008, based on advancement in the field, TEC updated the Winners at Work curriculum and placed it on-line with the College of Direct Support. This has significantly increased provider agency access to the training for new job coaches. Rate and Funding Incentives TEC recognized the importance of incentives to provider agencies for assisting people to be employed. The DIDS rate structure for day services is a fundamental driver of service decisions. Accordingly, when DIDS initiated a process to change its rate structure, TEC made two important recommendations regarding the rates for employment services. First, TEC recommended that the employment services rates be higher than for facility-based and community-based services to reflect the priority the Division places on employment. Second, TEC recommended that agencies be reimbursed for employment services based on the hours that a person works rather than hours of on-site supervision in order to provide an incentive for the fading of job coaches and the use of natural supports in the workplace. DIDS accepted both of these recommendations and established a very favorable rate structure for employment based services. Additionally, it was brought to TEC’s attention that many provider agencies were not beginning to claim DIDS reimbursement for employment services until after DRS closed the person’s case. Since the last stage of the DRS process is 30- and 60-day status reports, during which job coaching is not funded, agencies experienced financial loss during this period. TEC made the case that DIDS should fund job coaching as soon as DRS funding ends, eliminating the 60-day gap. DIDS accepted this recommendation, which removed a financial disincentive for employment. Discovery An important factor in successful employment outcomes is the ability of people with intellectual disabilities to participate in the planning process and make choices based on their interests. Many persons served by DIDS have limited experiences in the community upon which to base employment decisions. Discovery is a process which gives people the opportunity to explore their interests and gain community experiences, which provides a base for informed decision making. TEC has made efforts to promote discovery as a critical component of DIDS day services and several agencies now offer a formal discovery curriculum for the people they serve. Employer Outreach and Job Development Employment opportunities for people with intellectual disabilities are contingent on effective relationships between provider agencies and employers. Job developers from provider agencies contact employers to identify job openings and work with employers on the conditions of the job. Communicating the value of people with disabilities to an employer and responding to an employer’s needs requires sophisticated strategies. TEC has held forums for agencies to share successful job development strategies and is committed to creating a job development training curriculum. Another vehicle for fostering relationships with employers is a Business Advisory Council (BAC). BACs developed in Knoxville and Chattanooga bring together local employers interested in employing people with disabilities. They provide an opportunity for provider agencies to dialogue with employers on their workforce needs. TEC is committed to supporting the creation of BACs across the State. Status of TEC and Employment First! To gauge the status of TEC and the Employment First! initiative, representatives of the partner agencies and key stakeholders were interviewed. In addition to eliciting general feedback on the status of the initiative, the interviewees were asked what they think is working and what is not working in the system for supporting people served by DIDS to be employed. The following is a synopsis of the feedback which was received. It is important to note at the outset that the leadership of DIDS, DRS and CDD continues to express strong support for the objectives of the Employment First! initiative. Former DIDS Deputy Commissioner Steve Norris noted that employment is a fundamental component of every person’s identity, “…so it is only natural and logical that employment is of critical importance to Tennesseans with intellectual disabilities.” He added, “given the state of the economy, people often ask me about our expectations around employment. The short answer is that for people who want to go to work, we expect it to be vigorously pursued.” DRS Assistant Commissioner Andrea Cooper had similar sentiments stating, “The Division of Rehabilitation Services is committed to the full inclusion of clients with intellectual disabilities into the integrated workforce. Our clients have talent, worth and work skills that American society cannot live without. The Tennessee Employment Consortium helps clients and employers overcome both real and perceived barriers to employment that an intellectual disability can create.” Finally, Wanda Willis, the executive director of the Tennessee Council on Developmental Disabilities, said, “We have made significant progress on Employment First! but we have not achieved our objectives. We need to set our goals higher. It’s not a question of whether people have the ability to become employed; it’s a question of our ability to establish strong policies and a skilled support system that will provide employment opportunities for people with intellectual disabilities.” The following represents themes from the interviewees on aspects of the Employment First! initiative and the employment service system for people served by DIDS that they perceive to be working. Employment First! is an Important Value in the Tennessee System Each of the stakeholders expressed support for the Employment First! goal of expanding employment opportunities for people with intellectual disabilities. As an example, Jon Cardwell, director of vocational services at Dawn of Hope, said that Employment First! has been adopted as a core value at his agency and he “is focused on providing diverse employment opportunities for anyone who wants to work.” Doria Panvini, a representative of The Arc of Tennessee and the parent of a supported employee, said in support of Employment First! that “the dignity of being productive that comes from employment is incredibly valuable.” TEC has been an Effective Vehicle to Support the Goals of Employment First! The stakeholders lauded TEC as a locus for collaboration among agency partners and community input. Dr. Alicia Cone, a policy analyst with the Tennessee Council on Developmental Disabilities, said she is impressed that DRS and DIDS “have worked together as part of the TEC process to integrate their policies.” Joel Blackford of DRS agreed, saying that TEC has been a “great benefit” to collaboration between DRS and DIDS on coordination of policies and services. Bill Schiers, former executive director of The Arc of Washington County, said, “We are thankful for the people [TEC] who come together in a spirit of optimism and dedication to the proposition that our service delivery system can and should create opportunities for people to contribute their gifts and talents to the community of work.” Julie Huber, director for Day Services at DIDS shared similar sentiments saying, “What strikes me every time we have a TEC meeting is that there is so much energy and creativity in the room. TEC is critical to the success of employment, through discussion and sometimes even spirited debate. TEC is instrumental in developing policies and best practices—TEC brings it all together and exemplifies the spirit of Employment First!” The DIDS Rate Structure and Policies for Employment Based Services have been Effective Incentives for Employment Based Services The stakeholders were in agreement that the DIDS rate structure and policies that emanated from TEC have served as an incentive for the development and operation of employment based services. Sandy Stevens, the director of vocational services at Community Developmental Services, said the funding for supported employment is “much better” and that the coordination between DRS and DIDS funding helps agencies. Donna Palmer, director of employment concepts at Shelby Residential and Vocational Services (SRVS), agreed, saying that the “higher rates for supported employment have had a positive impact.” Lee Brown, director of supported employment services for Impact Centers, lauded the policy on providing funding at the conclusion of the DRS stabilization phase, saying that the previous policy had been a disincentive to employment. Finally, Bob Sexton, executive director of the Cerebral Palsy Center of Knoxville, called the policies facilitating job coach fading and the use of natural supports in the workplace “forward thinking” and said that these policies have contributed to more successful employment outcomes. TEC Efforts to Encourage Discovery are Creating a Positive Dynamic for Employment Several stakeholders noted that efforts to foster discovery in the DIDS day services system have provided an effective process for people to make informed choices. Joel Blackford said that discovery is very valuable in “identifying people who are ready to go to work.” Mike Sass said that discovery has provided “the tools for knowing who we are working with and that’s good.” Lee Brown agreed, saying that discovery leads to better job matches and more successful employment outcomes. TEC Efforts to Foster Best Practices in Job Development and Employer Outreach are Critical to Expanding Employment Opportunities The stakeholders believe that implementation of effective strategies for job development and maintenance of mutually beneficial relationships with employers will result in expansion of employment opportunities. Mike Sass said that provider agencies are “still marketing themselves to employers as problem solvers despite the downturn in the economy.” He said that successful agencies are meeting employers where they are at, including working with organizations such as Chambers of Commerce. Julie Huber agreed, saying, “It is great to see provider agencies using community resources such as their local chambers and career centers to connect to employers. With such strong ties to the business community, organizations like the chamber and career center are well positioned to make the link between people with significant disabilities and the business community.” While the stakeholders pointed to these and other positive contributions of TEC, there were also things they believe are not working in the Tennessee system. The Core Value of Employment First! is Not Universally Accepted Throughout the System The stakeholders expressed concerns about whether the Employment First! policy is being implemented by all participants in the system. Mike Sass said, “Some provider agencies in the system do not focus on employment for the people they serve.” Doria Panvini noted the loophole in the Individual Support Plan process that people who say they do not want to work are excluded from the Employment First! policy. She said this keeps people who may not understand what employment is from having the opportunity to be employed. Lee Brown said, “Employment First! looks great on paper, but system-wide it’s not actually happening.” Alicia Cone noted that much of what has been accomplished to date has been through a voluntary approach and that perhaps it’s time to strengthen regulations regarding employment. The TEC Partnership Can Be Improved and Expanded Despite its considerable successes, stakeholders pointed to the need for improvements to TEC. Bill Schiers expressed concern about TEC being separate from other DIDS planning efforts. He said, “In our current service delivery system some people work on introducing person centered thinking into the core of the support design process, others work on making employment the centerpiece of efforts to help people live lives of value, and still others work on creating better ways to measure processes and improve efficiency within the service delivery system. Problem solving of this variety lacks the power to unify our efforts.” Alicia Cone said that diversity in TEC participation has fallen off and that renewed efforts to solicit participation from people with disabilities and families are needed. Jon Cardwell cautioned that TEC needs to avoid being “political” and maintain its role as an open vehicle for community discussion. Doria Panvini agreed, and said that she thinks TEC needs to more clearly define a community vision that it is striving for. Joel Blackford said that the TEC partnership needs to be enhanced at the local level. He cited the need for joint training of staff from the DRS and DIDS systems. He also called for more collaborative case planning at the local level to ensure that people have greater opportunities for job acquisition and retention. Finally, Donna Palmer said that TEC needs to foster partnerships between provider agencies to coordinate employer outreach and relationships. Mike Sass agreed, saying that employers want a “single point of contact” for the employment of people with disabilities. Sandy Stevens added that TEC needs to spearhead an employer outreach effort. Funding Disincentives for Employment Remain The improvements in the rate structure and policies for employment services have not eliminated disincentives for employment. Bob Sexton said that the cost-revenue ratio in the DIDS rate structure is still more favorable for group and facility based services than for individual employment. He said, “Provider agencies must fundraise and work against the bottom line to do the right thing.” Lee Brown expressed concern about DRS reimbursement policies, saying that DRS requires extensive job coach training but its rates are low. He also said that DRS only reimburses at 50% of the payments for placement and stabilization for community based State Use jobs, which he views as unfair. Bob Sexton added that the DRS requirement that an agency provide two contacts per month of Follow Along services for the life of the job was a disincentive for agencies to serve people with no funding for long-term employment supports. He said that his agency currently is providing Follow Along supports to 40 people who are unfunded, which is a considerable drain on his agency’s resources. The Dids Waiting List Impedes Employment Opportunities The DIDS waiting list for day services funding is a barrier to employment for people who need some level of paid supports for job retention. Sandy Stevens said she is troubled by the numbers of people she sees who want to work but are on the waiting list. She said that provider agencies are not in a position to absorb the costs of on-going supports. Jon Cardwell agreed, calling the waiting list “the elephant in the room” in planning to expand the number of people who are employed. Mike Sass said that the waiting list has a particularly negative effect on students who want to transition from school to work. School systems and DRS are unwilling to pursue employment for transitioning students who will need supports for job retention but have no funding for those supports. Doria Panvini agreed, saying that in the absence of funding for employment supports “kids simply go home” after graduation. Many Families Remain Resistant To Community Employment The stakeholders noted that family resistance continues to be a barrier to people having the opportunity to be employed. Donna Palmer noted that family issues play an important role in employment planning and that it is much easier for her to provide employment for people living in residential programs. Doria Panvini agreed, remarking that she believes many families do not trust that their loved one will receive appropriate supports for employment. There is Insufficient Information in the Community Highlighting the Value of the Employment of People with Disabilities The stakeholders believe that there needs to be a greater effort to provide public information on the benefits of hiring people with disabilities. Doria Panvini said that TEC needs to “make employment real and more highly visible.” Alicia Cone said that TEC needs to make use of Web-based technology, such as Webinars, and Facebook, to communicate information on employment. Conclusion People with intellectual disabilities have the ability to work and be valued employees. Community employment affords rich opportunities for relationships with co-workers and increased dignity and independence. Accordingly, a job for everyone who wants one should be a priority for Tennessee’s system for serving people with intellectual disabilities. For the past eight years, the Tennessee service delivery system for people with intellectual disabilities has been guided by the Employment First! initiative, which envisions the opportunity for community employment for all people with intellectual disabilities. This initiative is supported by an effective partnership between DIDS, DRS and CDD. Additionally, the Tennessee Employment Consortium provides a critical structure for stakeholder input and support for the initiative. The Employment First! initiative has resulted in a 43.5% increase in the number of people served by DIDS who are employed, as well as numerous policies and practices that support and provide an incentive for employment. There is, however, considerable progress to be made. There is evidence that the values of Employment First! are not shared throughout the service delivery system and efforts need to be made to assure that all people with intellectual disabilities have the opportunity for employment. Additionally, there continue to be financial disincentives for provider agencies to offer employment services which must be addressed. Finally, new strategies need to be implemented for outreach to and maintenance of relationships with employers in order to expand job opportunities. Employment First! has highlighted the possibilities for the employment of people with intellectual disabilities in Tennessee. Further progress will require renewed efforts and creative strategies. The potential for enriching lives through employment warrant a continuing effort. Robert B. Nicholas, PhD, is a Senior Visiting Fellow for Disability Research at the John J. Heldrich Center for Workforce Development at Rutgers University. He coordinates the research agenda for the U.S. Department of Labor, Office of Disability Employment Policy funded National Technical Assistance and Research Leadership Center. He also provides technical assistance to the Tennessee Employment Consortium under a grant contract with the Tennessee Council on Developmental Disabilities. He resides in Corryton, Tennessee. FROM HEARTACHE TO HOPE Middle Tennessee Families Living With Autism By Leisa Hammett, Photography by Rebekah Pope, Published by Fields Publshing, Inc., 63 pages Book Review By Jo Ver Mulm We have a little saying in the autism community that goes like this: “If you know one person with autism, then you know one person with autism.” It’s simple, but there’s really no other way to say it. The abilities, challenges and outcomes of people with autism are as diverse as the faces and families that host them. In From Heartache to Hope, long-time autism advocate and Partners in Policymaking graduate (1998-99) Leisa Hammett introduces us to 18 Middle Tennessee families living with autism. While it seems like a weighty and unlikely subject to condense into a coffee-table book, each one-page story provides a clear and honest snapshot, both figuratively and literally, into their lives. Black and white photographs by Rebekah Pope are used to exquisitely illustrate the book, and they capture some of the most expressive and shining eyes you’re likely to ever see. Reading this book is like taking a tour of the autism spectrum. It’s a journey that crisscrosses ethnic, cultural and socio-economic boundaries—as does autism itself. Some of the families are biological; others are adopted. Some come from substantial means and influential families; others live on government assistance and the charity of friends. We meet working moms, stay-at-home moms and a father called away to serve in the war. Some of the families are still trying to get their bearings after a relatively recent diagnosis. Other featured families are seasoned enough to be called veterans and have taken their places as established leaders in the local autism community. Like John and Janet Shouse, who’ve made secondary careers in the autism field, serving passionately as volunteers in autism advocacy organizations. Parent Juli Gordon authored a book about interventions that were successful in her son’s recovery and with her husband, Gordon, established a facility that offers early intervention services. The sibling stories are equally inspiring. Teenager Cody Taroli admits he is fiercely protective of his younger brother with developmental delays, while college students Emma Shouse and Allison Vice are pursuing education in the fields of social work and special education, respectively. No doubt they were influenced by their autism experience as well. From Heartache to Hope is not a book of comparisons or even instructions. It contains no endorsements of treatment protocol, though it does make quick mention of a few regional resources. It is a testimony of perseverance, faith and unconditional love as evidenced in the beautiful family portraits. The book is meant to encourage—and it does—but it does not sugar-coat the struggles of these families. Sherry Jackson, a single mother, courageously reveals that during a series of crises she seriously considered taking her own life as well as the life of one of her children with autism. Three of her children are on the spectrum, but with her faith in God she found the strength and grace to regroup and carry on. Nicholas Jones, an adult living with autism, had similar overwhelming feelings despite having earned an associate’s degree in business management and living independently. Each day brings a new challenge, but both Sherry and Nicholas have steeled themselves to cope, and they do with assistance from support organizations like the Autism Society of Middle Tennessee (ASMT). From Heartache to Hope was a collaborative and volunteer effort. It is a tribute to the work of ASMT, its staff, volunteers and the families they serve. All proceeds generated by the book will go to the organization. Jo Ver Mulm has a son on the autism spectrum and is a graduate of the 2008-09 Partners in Policymaking Leadership Institute. THE AUTISM CHECKLIST: A Practical Guide for Parents and Teachers By Paula Kluth, PhD and John Shouse, Published by Jossey-Bass, 240 pages Book Review by Ned Andrew Solomon As the stepfather of two young children on the autism spectrum, I have been exposed to a plethora of information about autism—from TV, NPR, Internet news and print sources—and things I could be doing or should be doing when raising individuals with this disability. The information can be confusing, is often conflicting and, at the very least, is somewhat overwhelming. That, on top of just trying to live the daily life and stay present with these kids as they do what they do in their unique, often delightful and inspiring, sometimes problematic, way. So, it’s gratifying that authors Paula Kluth and John Shouse (a Partners in Policymaking graduate from 2002-03) have put together a book that compiles this vast universe of information into easy to look up categories; a “Practical Guide”. Are you a teacher faced with the challenges of successfully incorporating students on the spectrum into your busy classroom? There’s an entire section of the book for you, broken up into succinct categories, like “Giving Clear Directions in the Classroom”, or “Making Within School Transitions Easier for Students”. And that’s just two of 24 Checklists for Teachers. Are you a parent dealing with a recent diagnosis? How about tips on “Modifying the Home”, Adaptations While Traveling”, or “Advocating for Your Child”? This is just a small sampling of what this book offers in easy to read, but in no way “dumbed down”, language. Best of all, this book has none of that “gosh my life sucks because I have a kid with autism in my class, or in my home.” It helps that Paula Kluth is also the author of the book, “You’re Going to Love This Kid!”, and that both writers, according to the introduction, “drew heavily from the words and experiences of people on the spectrum in order to create our recommendations and suggestions.” It shows. It’s practical and positive! Makes you think that whatever challenges you’ve faced, or are about to face, are do-able. There’s also a comprehensive section at the end dedicated to helpful resources, like videos, Web sites and organizations in the autism arena. The Autism Checklist is available at Amazon.com, or on the Web site of your favorite bookseller. If you visit the Autism Society of Middle Tennessee’s (ASMT) Web site at TNAutism.org, and click on the link in the left-hand column for the Autism Bookstore at the Autism Society of North Carolina, ASMT will receive a portion of the proceeds from any sales of any books you order there. Ned Andrew Solomon is director of the Partners in Policymaking™ Leadership Institute of the Council on Developmental Disabilities. LOW TECH ASSISTIVE TECHNOLOGY By Paul N. Whitehead Putting on a shirt. Starting the dryer. Closing a door. All three are tasks many people overlook as possible challenges, but all can cause a hiccup in the lives of people with disabilities. The Mid-South Access Center for Technology (Mid-South ACT) hopes to eradicate any difficulties in these and other household chores for all individuals. In June, 2010, the group will host a Low Tech Assistive Technology Resource Fair and Reutilization Network Meeting in the Mid-South area to show that many duties can be accomplished by all, without fighting a financial battle to get them done. “I think it’s important for people to know that it doesn’t have to be something you bought,” said Betty Anderson, who is one of the Volunteer Project Coordinators for the event. While expensive lifts and mechanical chairs represent a fraction of the high-tech assistance out there for people with disabilities, Mid-South ACT aims to enlighten the world to the fact that low-tech can be just as, if not more, beneficial in everyday life. “I just think it’s a great idea that people can, not only bring ideas together in one place, but to come in and see what can be done,” Ms. Anderson said. “That could lead them to say, ‘Oh, I can do this and this’, and maybe give them ideas on what they can come up with according to their disabilities.” Mid-South ACT began as a small assistive technology center at the University of Memphis in 1995; however, it has grown into a member of the Tennessee Department of Human Services’ Technology Access Program, the Alliance for Technology Access and a partner with Advanced Multimedia Devices—a Partnership for Excellence Program. Ms. Anderson, who was diagnosed with rheumatoid arthritis at the age of seven and has been in a wheelchair since she was 13, has volunteered with Mid-South ACT for two years and looks at the event as a chance to springboard many of her ideas to others who are in similar situations to hers. “I knew I hadn’t planned on going to live with anybody (after my husband passed away in 1993) unless I had to,” Ms. Anderson said. “If I was going to live by myself I would have to do these things.” To get dressed in the mornings, Ms. Anderson has devised a pulley system in the doorway of her bedroom. By fastening her desired blouse to a hanger attached to the pulley, she can raise the shirt over her head. While doing laundry, Ms. Anderson has devised a way to make the dryer’s on switch, located on the back panel of the dryer, a problem of the past. Using a cast-iron fireplace tong as an extension of her arm, she can adjust the temperature and time of her dry cycle. And to close doors, Ms. Anderson has equipped knobs with belts and party leis. By grabbing one and allowing the momentum of her wheelchair to do the rest, no door is an obstacle. “I don’t like being told what I can’t do,” Ms. Anderson said. “I came up with these ideas out of necessity.” These examples, along with button holders, modified can openers and a trusty pair of pliers, only scratch the surface of the low-tech assistance Ms. Anderson has equipped her home with over the years. Ms. Anderson hopes her ideas will show people with disabilities that there is a possibility to live independently without emptying the wallet. She hopes to open eyes in regards to lifestyles and open minds into creating similar tools for themselves. “There’s a lot of high-technology out there, but especially for those who have a new disability, they don’t realize all the [low-tech] technology that is out there,” she said. “Until you accept the lifestyle, you won’t be able to put forth the effort to live with it.” Contact Betty Anderson, Volunteer Special Project Coordinator, at act@memphis.edu or 901-678-1489 for additional information about participating in or attending the Low Tech Assistive Technology Resource Fair and Reutilization Network Meeting in June of 2010. Their Web site is Act.memphis.edu This article was originally printed in the Mid-South ACT Enhancing Abilities Resource Newsletter, August, 2009, and is reprinted with permission. Betty Anderson is graduate of Partners in Policymaking Leadership Institute (2004-05). Paul N. Whitehead volunteers at Mid-South ACT and is a graduate student studying for a Master’s degree in Exercise Sport Science at the University of Memphis. UNDERSTANDING THE NEEDS FOR DISABILITY-RELATED SERVICES THROUGHOUT TENNESSEE By Laura Landine and Robert Hodapp To ensure that services are targeted to the needs of their recipients, many organizations complete a needs assessment. Such assessments can also identify a system’s strengths and weaknesses, which can then be used to address current and future service needs. The Vanderbilt Kennedy Center’s University Center for Excellence in Developmental Disabilities (VKC-UCEDD) will be submitting a renewal application to the Administration on Development Disabilities for the next five years of support. In this renewal application, UCEDD’s are required to conduct a statewide Needs Assessment and to produce a Five-Year Plan, both of which should incorporate input from the Community Advisory Council. In considering how to meet these requirements, the VKC-UCEDD decided on a two-step process. First, we examined already-existing data, specifically from prior needs assessments and state plans developed by various Tennessee disability organizations. As the search began, it was interesting to discover that many organizations have independently created needs assessment and plans for the future. Rather than re-inventing the wheel, the VKC-UCEDD decided to use the existing documents to conduct a form of “meta-analysis”. Working with a faculty advisor and VKC-UCEDD staff members, a graduate student research assistant began the task of developing a list of agencies and organizations involved with disabilities. This list, which we tried to make as comprehensive as possible, included the Developmental Disability Network organizations (Tennessee Council on Developmental Disabilities, the Boling Center for Developmental Disabilities and the Disability Law and Advocacy Center), the main State departments and divisions dealing with disabilities, and the main statewide advocacy organizations. Once a general list was developed, we contacted a wide range of organizations and agencies. Explaining that we wanted to find additional information regarding the needs for persons with disabilities throughout the State, we requested current needs assessments and plans from each organization. We ultimately gathered needs assessments and plans from 26 different groups. From these documents, eight major themes emerged: (1) Education, (2) Home and Community-Based Services, (3) Transition Services, (4) Collaboration and Information Sharing, (5) Funding, (6) Health Care, (7) Ethnicity/Race: Language Barriers, and (8) Employment. A ninth category, “Other,” also was included to focus on the needs for foster care, emergency planning, transportation, training and child care services. The eight specific categories are further broken down into more descriptive segments. Once the categories were established, we developed a brief survey consisting of 12 questions. The survey was given to members of the VKC-UCEDD’s Community Advisory Council (CAC); participants were asked to rate the need for services in each of 12 areas. The ratings used a 5-point Likert scale, with 1 equaling “Not a major need” and 5 “A major need.” Although survey responses from CAC members provided an important first look at the State’s needs, we also wanted to expand our sample of respondents. To do so, each of the original eight categories was further broken down to describe specific aspects within each category. Education, for example, was further divided into early intervention services; educational services during the school years; postsecondary education; speech-language services; advocacy; least restrictive environment (LRE); and access to assistive technology. The resulting survey included five sections and asked participants for information about themselves, a person with disabilities they may know, and the need for specific services for individuals with disabilities. Depending on a person’s category of participant (for example, parent, individual with disability, service provider), participants completed either three or five sections of the survey. The survey continues to be available in a Web-based format that can easily be accessed on-line. For the VKC-UCEDD to learn the opinions of all Tennessee residents, we need to receive responses from persons living in urban and rural areas and from East, Middle and West Tennessee. In asking specifically about an individual with a disability, such as what diagnosis the person has and the individual’s age, researchers will be able to identify any relations between the types of services that residents feel are necessary and particular disabilities and ages. We also may learn more about the need for specific services in particular regions or in urban versus rural settings. Anyone interested in this important research may take the survey, which is entitled “Survey of Statewide Needs for Services in Developmental Disabilities”. We ask participants to please complete the survey by February 15, 2010. The survey can be accessed on-line at: http://tinyurl.com/ofnbov, takes approximately 15 minutes to complete and is anonymous. After completing the survey, participants may provide contact information to receive information about the results, as well as about other research studies being conducted at the Vanderbilt Kennedy Center. For more information, call Vanderbilt Kennedy Center at 615-936-8852 or Toll-Free at 866-936-8852. Laura Landine is a graduate student studying low-incidence disabilities in the Department of Special Education at Vanderbilt University. Robert Hodapp is professor of Special Education at the Vanderbilt Kennedy Center. NATIONAL DISABILITY DATA RESOURCES Compiled by Courtney Taylor Disability Data Resources is a Web-based project of the United States Department of Labor, Office of Disability Employment. Numerous resources are available to provide statistical data to answer questions and provide information on disability-related topics. Many resources now post their information on Web sites, which makes disability data readily and quickly accessible. Outlined on the Disability Data Resources Webpage is information on some of the data resources regarding people with disabilities. www.dol.gov/odep/pubs/fact/data.htm Finding Disability Data on the Web is a resource developed by the University of California, San Francisco Disability Statistics Center. An online discussion helps users who are beginning to use disability statistics or who want a clearer understanding of data sources. Links to major statistical data sources on disability are listed. http://dsc.ucsf.edu/main.php?name=finding_data#sources KIDS COUNT is a project of the Annie E. Casey Foundation. It provides funding and technical assistance for a nationwide network of KIDS COUNT grantee projects. They collect data on and advocate for the well-being of children at state and local levels. www.aecf.org/Home/MajorInitiatives/KIDSCOUNT.aspx The Research and Training Center on Community Living (RTC) analyzes various data sets to learn about the status and characteristics of individuals with disabilities in the United States. Highlights include annual surveys of states to assess residential services, analysis of the National Health Interview Survey findings to learn about people with disabilities living in their own or family homes, and periodic specialized analysis of other data sets. The RTC also conducts specialized analyses upon request. Check out the Publications & Products page for articles, reports and fact sheets. http://rtc.umn.edu/statistics/ The National Survey of Children with Special Health Care Needs is administered by the U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau. The primary goal of the survey is to assess the prevalence and impact of special health care needs among children in all 50 states and the District of Columbia. http://mchb.hrsa.gov/cshcn05/ State of the States in Developmental Disabilities is a research project administered by the University of Colorado. The project investigates the determinants of public spending for intellectual/developmental disabilities services in the United States. The State of the States project has produced over 170 articles contributing to the field’s understanding of the evolving character of developmental disabilities service delivery systems in the United States. A list of publications is available on their Web site. www.cu.edu/ColemanInstitute/stateofthestates/index.html Financial and programmatic trends are presented in The State of the States in Developmental Disabilities: 2008, by David Braddock, Richard Hemp and Mary C. Rizzolo. The book is available for purchase through the American Association of Intellectual and Developmental Disabilities Web bookstore https://bookstore.aaidd.org/BookDetail.aspx?bid=77 or by calling 301-604-1340. The United States Census Bureau provides data on disability. www.census.gov/hhes/www/disability/disability.html Article Rizzolo, Mary C., Hemp, Richard, Braddock, David, and Schindler, Abigail (2009). Family Support Services for Persons with Intellectual and Developmental Disabilities: Recent National Trends. Intellectual and Developmental Disabilities, 47, 152–155. http://aaidd.allenpress.com/pdfserv/10.1352%2F1934-9556-47.2.152 Courtney Taylor is associate director of Communications and Dissemination at the Vanderbilt Kennedy Center. 2010 ELECTIONS – STRENGTH IN NUMBERS By Todd Hash In grade school, our children are taught that elections are the bedrock of democracy and that “every vote counts”. However, in the rough and tumble world of politics, it is perhaps more true that there is “strength in numbers”. Organizations or segments of the population that vote regularly in large numbers, year after year, have the greatest political power. A classic example of this power through numbers is seen in our nation’s senior citizens, the core constituency of AARP. Politicians know that seniors are among the most reliable voters because they vote not just in presidential elections, but also in primary elections. For this reason, politicians listen closely when seniors speak out and, as a result, often change policy positions that are frowned upon by our seniors. In contrast, the disability community historically has not held the same power in the halls of Congress or the Tennessee General Assembly. This is because, as a group, people with disabilities have neither voted in large numbers nor reliably in big and small elections. There are many reasons for this, including: Historical discrimination that discouraged or prohibited voting by certain people with disabilities, and An inaccessible voting process that made it difficult, if not impossible, for many people with disabilities to exercise their Constitutional right to vote. That’s the bad news. But there is good news too. Things are changing and people with disabilities are voting in larger numbers than ever before. In the past 20 years, new laws have made polling places and voting equipment much more accessible, while stigmas against people with disabilities have been fading. In fact, many Tennesseans with disabilities voted independently for the first time in their lives during a 2006 gubernatorial election that featured a new wave of voting machines designed to be disability-friendly. A recent study by Rutgers University reflects this increase in voting by persons with disabilities. The study estimates that 50% of Tennesseans with disabilities voted in the 2008 presidential election, while 56.6% of Tennesseans without a disability voted. The gap is closing, and closing fast, but there is still much more work to be done. The study showed great variation nationally in voting among people with different types of disabilities. For example, 63.1% of eligible voters who are deaf or hard of hearing cast a vote while only 45.7% of those who had difficulty leaving the home alone voted. In addition, only 46.1% of persons identifying with an intellectual disability made it out to vote. Looking to the Future Now, dream for a moment. How great would it be if we could proclaim that Tennesseans with disabilities voted at a greater rate than the general population in the November 2010 Governor’s race? It would mark a truly historic event, not only for Tennessee but the nation. It would be a great next step toward establishing people with disabilities as a strong, reliable voting bloc. So How Do We Get There? We focus on the basics for the next year. As a disability community, we need to make sure that every person with a disability is registered to vote, understands the deadlines for voter registration and knows election dates. Organizations that serve people with disabilities need to do their part to encourage staff, volunteers, service recipients and other people with disabilities to register, if necessary, and vote when the time comes. There will be a tendency among many, with and without disabilities, to focus only on the November general election; however, that’s only half the battle. We must also encourage people to vote in the August primaries that will select the nominees for governor and other races. This is critical because politicians and their campaigns study who votes in the primaries and take those people most seriously. So as more and more people with disabilities vote in general and primary elections, word of their collective political power will grow each year. The result will be greater influence on public policy, not only in the polling place but also in Congress and the our General Assembly. This is so important, because last Spring Tennessee was faced with a budget crisis and chose to balance the budget by slashing countless programs that provide services to people with disabilities. If the economy doesn’t improve, more cuts will come next year, including the eventual elimination of the Family Support Program, one of the most popular and cost-effective programs helping families of persons with a disability stay together (see page 5). Of course, success depends on you. Will you go out and vote? Will you encourage family and friends to register and vote? Better yet, will you learn about the candidates for governor and other offices, volunteer to work in their campaigns, and attend rallies to express your support for issues that are important you? For more about how you can get involved and prepare for next year’s elections, contact the Tennessee Disability Coalition’s Vote Campaign on-line at www.tndisability.org, by writing to news@tndisability.org or by calling 615-383-9442. Todd Hash is director of public policy with the Tennessee Disability Coalition. DISABILITY DAYS 2010 We often hear that it’s not what you know, but who you know that counts. While not entirely true, establishing a relationship with your legislator today can go a long way towards bending his or her ear tomorrow. Disability Days is your opportunity to meet with State legislators at the Capitol and talk about issues important to you and your family. Dozens of disability organizations from across the State will be participating and with your help we can ensure that every legislator gets to hear from a constituent with a disability, a family member or friend. February 24 – West Tennessee Day on the Hill March 3 – Middle Tennessee Day on the Hill March 10 – East Tennessee Day on the Hill For information on how you or your organization can get involved, contact Courtney Jenkins-Atnip at the Tennessee Disability Coalition She can be reached by phone at 615-383-9442 or by e-mail at courtney_j@tndisability.org. THE LEGISLATIVE MONITOR The Legislative Monitor is a monthly newsletter that tracks state and federal legislation and public policies that have the potential to affect the lives of people with developmental disabilities. It is published by The Arc of Tennessee under a grant from the Council on Developmental Disabilities. When the Tennessee General Assembly is in session, the Legislative Monitor prints an issue with contact information about all the representatives and senators, as well as the members of House and Senate committees. Other issues during the session report on the status of bills that relate to people with disabilities. During the legislative session, The Arc also produces the “Legislative Monitor Weekly Update” for people who want to keep more current with bills as they move through the House and Senate committees. Weekly conference calls are held to discuss current legislation. Both the Legislative Monitor and “Legislative Monitor Weekly Update” are free. You can receive one or both via mail, e-mail or Fax. To subscribe, contact Lori Israel at The Arc of Tennessee. Phone: 615-248-5878; or e-mail: lisrael@thearctn.org; or mail: 151 Athens Way, Suite 100, Nashville, TN 37228. IMPORTANT ELECTION DATES July 6, 2010 Last day to register before the August primary July 16-31, 2010 Early voting period for the August primary August 5, 2010 August primary to select party candidates for Governor, US House Representatives, and Tennessee General Assembly Representatives and one half of Senators October 4, 2010 Last day to register before the November general election October 13-28, 2010 Early voting for the November general election November 2, 2010 General election, including election of a new Governor, US House Representatives, and General Assembly Members STATE VOTING RESOURCES State Election Commission On the Web: www.state.tn.us/sos/election By Phone: 1-877-850-4959 By Email: tennessee.elections@tn.gov Tennessee Disability Coalition On the Web: www.tndisability.org By Phone: 615-383-9442 By Email: news@tndisability.org Disability Law and Advocacy Center On the Web: www.dlactn.org By Phone: 1-800-342-1660 By Email: GetHelp@DLACTN.org NEWS FROM PATHFINDER Services Needed In Tennessee Tennessee is a state of long waiting lists, partial funding sources, and fragmented disability and community services. Tennessee is also a state filled with extremely committed professionals who write grants, expand services, start programs, organize parent groups into action, and work tirelessly to improve and promote funding for services throughout the State. As a result, new agency sponsored programs, which offer limited services with specific guidelines, come and go in communities on a regular basis, contributing to a service delivery system that is disjointed and difficult to navigate. Tennessee Disability Pathfinder is a statewide disability information and referral program to assist individuals with disabilities, family members and agencies with services needed in their community. This office opened in 1997 and is a joint project of the Tennessee Council on Developmental Disabilities and the Vanderbilt Kennedy Center for Excellence in Developmental Disabilities. A statewide bilingual (Spanish) HELPline is a primary service of Disability Pathfinder and the individuals who contact our office often have complex social situations in addition to a disability condition. Pathfinder staff are qualified and committed to help callers find suitable community resources or guidance about how to effectively navigate the service delivery system. To do this, Pathfinder maintains an Internet community of resources that includes an updated directory of statewide agency services. It is important to note that having access to disability resource information and community services may not be enough for an individual to secure a needed service in Tennessee. Five Year Summary Pathfinder collects caller information to better understand what type of services are needed in the community. This statistical data assists us in planning and organizing new information for the database or Web site. In the last five years (2004-2009): Over 7,500 individuals called our office requesting specific and general information about disability services or community programs from 94 counties in Tennessee (Hancock County is the exception), 36 states, and four countries; Family members were the largest group to contact our office for assistance (see Chart 1); The majority of services needed were for adult programs (64%) followed by school-age children and youth (27%) (see Chart 2); In the Spanish-speaking community, the majority of services needed were for school-age children. Pathfinder collects data about specific services requested and has over 60 keyword service categories within broad categories. The broad category sections include Advocacy & Law, Camps & Recreation, Education, Employment, Health, Housing, Mental Health, Specific Disability, Support for Families, Technology and Transportation. Over the last five years, the following service categories made the Top Five Service List every year. Financial Assistance (disability related, health, rent, utilities), Social Security Income (application and appeals process), Housing (affordable), In-home Assistance, and Employment. Cutbacks to TennCare services created an increase in caller requests for low-income Health Care Clinics. In the last year, caller requests for Mental Health services have increased significantly. In fact, for the first time in 13 years, Pathfinder has received more crisis calls than ever before (see Chart 3). Carole Moore-Slater, MS, director, has worked in the disability field in Tennessee as a social worker, teacher and family support coordinator for over three decades. She has worked with Disability Pathfinder since it opened in 1997. For Further Information Tennessee Disability Pathfinder English & Español (615) 322–8529 (800) 640–4636 TTY/TDD users: please dial 711 for free relay service www.familypathfinder.org tnpathfinder@vanderbilt.edu INVITING YOU TO CONTRIBUTE TO OUR SPECIAL ANNUAL ISSUE OF BREAKING GROUND DEVOTED TO THE ARTS Do you write short stories or poetry? Do you paint, draw or take pictures? Then we’d like to see your work for possible publication! The editor will consider: Fiction, up to 1,000 words, and poems, whether traditional or modern. Photos and all other forms of artwork. All Entries Must Be Submitted By June 15, 2010 Content is devoted to materials by or about persons with disabilities. We’ll give contributors a prominent by-line, a biographical note and copies of the issue. Please include your name, complete contact information and a two- or three-sentence biography with your submission. Send your submissions to: Ned Andrew Solomon Managing Editor, Breaking Ground Tennessee Council on Developmental Disabilities Parkway Towers, Suite 130 404 James Robertson Parkway Nashville, Tennessee 37243-0228 ned.solomon@tn.gov TENNESSEE YOUTH LEADERSHIP FORUM A Free Leadership And Advocacy Training Program For Tennessee High School Students With Disabilities July 5-8, 2010 on Vanderbilt University campus in Nashville Sponsored by the Tennessee Council on Developmental Disabilities For an application or more information contact NED ANDREW SOLOMON • ned.solomon@tn.gov or 615-532-6556 Deadline For Applications: March 1, 2010 TENNESSEE SPOTLIGHT Gordon Bonnyman, Jr., executive director of the Tennessee Justice Center, recently won the 2009 Morris Dees Justice Award. Mr. Bonnyman has spent his career representing low-income clients, the elderly, prisoners, persons with disabilities and the uninsured. He has been the lead counsel in more than a dozen class actions lawsuits, many of which have served as models for legal services organizations throughout the United States. The Morris Dees Justice Award was established in honor of University of Alabama alumnus and civil rights attorney, Morris Dees. The award honors his life-long career dedicated to public service, including his fight for civil rights, equality and freedom, and against poverty, discrimination and racism. VSA arts Tennessee submitted several performers and groups to be considered for an International arts festival to be held in June, 2010, in Washington, DC. Panelists from the Kennedy Center in Washington, DC, Dance/Metro D.C., Priddy Charitable Trust and the Kennedy Center American College Theater Festival selected a jazz trio to appear. This is the first time the State of Tennessee will be represented in the festival. Two of the musicians, drummer and band organizer Christian Kissinger and bass player Caleb Shown, are freshmen at Merrol Hyde Magnet School in Sumner County. The keyboard player/vocalist, Elliott McClain, is a sophomore at the Tennessee School for the Blind in Mt. Juliet. VSA arts is an international organization formed by Jean Kennedy Smith, the last living sibling of President John F. Kennedy, in 1974 and is based in Washington, DC. Every four years, the organization has an international festival which features top performers with disabilities in the areas of dance, theater and music from all over the world. In July of this year, Company d, based in Memphis, had its 9th Summer Workshop for youth and adults who are part of the Company d dance ensemble. The two weeks of intense dance instruction included jazz, ballet and African dance. The 21 dancers who attended also had workshops in percussion instruments, mask making and drama. Darlene Winters, coordinating director of the camp, was assisted by a host of master instructors, including Francis Roach from the world renowned Luigi Dance Studio in New York. Peter Barton, also from New York, continued filming and adding to his documentary-in-progress of Company d. Dancers Laurie Hobson, John T Farley and Amanda Cash are all graduates of the Tennessee Youth Leadership Forum (YLF) and are 10-year participants in Company d. Brenda Farley, Company d co-founder and volunteer, is a Partners in Policymaking 95-96 graduate. The Arc of the Mid-South held its 14th annual benefit gala and awards ceremony recognizing the talents and achievements of people with disabilities, and those who have made tremendous contributions to promote and improve the lives of people with disabilities. Award winners and nominees from Shelby Residential and Vocational Services (SRVS) include John Barzizza, chairman of the board at SRVS, winner of the Distinguished Community Service Award; Partners 07-08 graduate Adrian Starks, winner of the Empowerment Award; and fellow nominees Alicia Brown for Employee of the Year and Velma Bledsoe for Professional of the Year. The Arc of the Mid-South provides advocacy services for people with disabilities. SRVS is the largest comprehensive service provider for people with disabilities in West Tennessee. In addition, SRVS received statewide recognition at the annual Tennessee Community of Organizations (TNCO) awards ceremony honoring individuals who have made a difference in the lives of people with disabilities. SRVS’ Ambassador Club, a unique volunteer club established by SRVS’ recipients, received the Community Outreach of the Year award, and direct support professional (DSP) Velma Bledsoe, won the Outstanding DSP of the Year award. On October 22, 2009, SCORE (State Collaborative on Reforming Education) released its Final Report entitled “A Roadmap to Success: A Plan to Make Tennessee Schools #1 in the Southeast Within Five Years.” The report lays out in detail a plan that includes four key strategies that will help Tennessee become the Southeast’s top education performer: embracing high standards, cultivating strong leaders, ensuring excellent teachers and utilizing data to improve student learning. For more information and to read the full report, please visit http://www.tennesseescore.org/index.cfm?Page=FinalReport On his 18th birthday, YLF 2009 graduate, Cody Noyes, appeared on the Jeff Fisher Show and was awarded a trophy for being the “High School Player of the Week”. As stated by John Dwyer, of Channel 2, “Cody Noyes is the Motivational Coach for the Smyrna Bulldogs. His stats won’t show up in the newspaper, he’s never scored a touchdown, yet he is the most valuable player. Cody has cerebral palsy and his dream was to dress out for a game. Cody addresses the team before and after every game. He’s a big part of the team. Coach Matt Williams made his wish come true Friday night when Cody dressed out in the Bulldogs 32-8 victory over LaVergne.” In addition, Mr. Noyes was elected Smyrna High School Scholar Athlete and will now be competing against students in other area high schools. Claudia Avila-Lopez, Carolina Meyerson and Luisa Ramirez de Lynch recently were honored by the Association of University Centers on Disabilities (AUCD). They received the Association’s 2009 Multicultural Council Award for Leadership in Diversity in recognition of their contributions to the Association, the disabilities field and their work with the Tennessee Camino Seguro and Camino Seguro West projects. This year, individual Leadership in Diversity awards also were given to the Tennessee Vanderbilt Kennedy Center and the Boling Center for Developmental Disabilities. Camino Seguro and Camino Seguro West are part of the Tennessee Developmental Disabilities Network’s designated priority to improve outreach to the Latino community. The commitment to that priority is reflected in the UCEDDs’ efforts, the Council on Developmental Disabilities’ financial support and key technical assistance from the Disability Law and Advocacy Center. The awards ceremony was held on Tuesday, November 10, at the Renaissance Washington Hotel, Washington, DC, during AUCD’s Annual Meeting. Anneliese Barron received the 2009 Mollie Gavigan Service Award from the Down Syndrome Society of Middle Tennessee in recognition of her hard work spearheading an initiative to bring the National Best Buddies organization to Tennessee. Her efforts will provide friendship and social opportunities to hundreds of individuals with disabilities throughout the State through peer-to-peer friendships. Ms. Barron’s goal is to start a Best Buddies Tennessee Office in time for the 2010-2011 school year. FOR MORE INFORMATION ABOUT THE COUNCIL, CONTACT THE COUNCIL OFFICE AT Parkway Towers, 404 James Robertson Parkway, Suite 130, Nashville, TN 37243-0228 TELEPHONE: 615-532-6615 TTY: 615-741-4562 FAX: 615-532-6964 E-MAIL: tnddc@tn.gov WEB: www.tn.gov/cdd MEMBERSHIP AND STAFF Council Chairpersons Joyce Sievers, Chair Steven Sheegog, Vice Chair Council Members Stephanie Brewer Cook, Knoxville Tonya Copleland, Nashville Barron A. Garrett, McMinnville Roger D. Gibbens, Chattanooga Mary Dale Greene, Columbia Sheri Grigsby, La Vergne Missy Herndon, Newport Nancy Hardin, Dyersburg Angela Hazlehurst, Jackson Pamela Huber, Kingsport Tommy Lee Kidd, Lawrenceburg Diane T. (Sandi) Klink, Memphis Sheila Moore, Brentwood Randy Oliver, Jackson John D. Piver, Johnson City Debbie Riffle, Humboldt Elizabeth Ann Ritchie, Knoxville Marilyn L. Sortor, Memphis Katherine A.T. Watson, Sale Creek State Agency Representatives Andrea L. Cooper Department of Human Services, Division of Rehabilitation Services Joseph E. Fisher Department of Education, Division of Special Education Debra Payne Department of Finance and Administration, Division of Intellectual Disabilities Services Ted R. Fellman Tennessee Housing Development Agency Virginia Trotter Betts Department of Mental Health and Developmental Disabilities Richard Kennedy Commission on Children and Youth Mike Hann Commission on Aging and Disability Cathy Taylor Department of Health, Maternal and Child Health Patti Killingsworth Bureau of TennCare University Center For Excellence Representatives Frederick Palmer UT Center for Health Services Elisabeth Dykens Vanderbilt Kennedy Center for Research on Human Development Protection & Advocacy Shirley Shea Disability Law & Advocacy Center of Tennessee Local Nongovernmental Agency Claudia Avila-Lopez Project Conexión Council Staff Wanda Willis, Executive Director Errol Elshtain, Director of Development Mildred Sparkman, Administrative Secretary Alicia A. Cone, Grant Program Director Lynette Swinford, Fiscal Manager Ned Solomon, Director, Partners in Policymaking™ Leadership Institute William Edington, Public Policy Director JoEllen Fowler, Administrative Assistant