ADD UPDATE FEBRUARY 2007 Message from the Commissioner I hope that everyone had a safe and pleasant holiday season,and wish you all the best for the coming year. I look forward to our continued collaboration in 2007 to improve the lives of individuals with developmental disabilities, and to ensure that the American Dream is accessible to everyone. As you can see, the ADD Update has a new look. We hope that our newsletter continues to be a vehicle for all of us to share our experiences and accomplishments, as well as a way to learn from each other. This month, we solicited stories from you the grantees, and responses to our information request came pouring in. I’d like to encourage you to continue to send profiles of your programs and projects to the Update. On the last page of each month’s issue, there is an explanation of the next “topic.” We always welcome stories that relate to that subject, as well as information about anything else that you’re doing that is new, exciting, or innovative. I am constantly impressed by the fresh ideas and innovative techniques that all of you bring to the table; I hope that you find this newsletter an effective way to share those ideas with each other. This month’s ADD Update focuses on inclusive recreation. People use recreational activities to relieve stress, connect with friends, be creative, or escape from their daily lives. For people with disabilities, recreation can be an important way to improve health and fitness, as well as an opportunity for community interaction. Individuals who are active are healthier, live longer, and enjoy a better quality of life. Regular physical activity substantially reduces the risk of dying of heart disease, the nation's leading cause of death. Despite the proven benefits of physical activity, more than 50% of American adults do not get enough physical activity to provide health benefits. More than 25% of adults are not active at all in their leisure time. In a country with a growing obesity problem, it is important to ensure that individuals with disabilities have access to activities that will allow them to live full, healthy lives. Inclusive recreation also allows individuals with disabilities to participate in arts and leisure activities that shape who they are and how they see the world. The following pages provide insight into just a few of the ways that ADD’s grantees are making recreation accessible. Additionally, on page two of this issue of the Update, you will find an article about ADD’s need for grantee photos to use in a variety of ways. I believe that it is important to build a library of photographs that show individuals with disabilities in diverse and positive ways. We can’t do this without you; please take out your cameras and participate in this project. Also, starting this month, we will feature an ADD staff member in each issue of the Update. This is an opportunity for you the grantees to get to know ADD team members with whom you may not have interacted previously. If you have any suggestions for the Update, please email Rebekah Yeager at Rebekah.yeager@acf.hhs.gov. INSIDE THIS ISSUE: ADD Photo Library 2 Wyoming UCEDD Helps People SOAR 2 Exploration in Utah Becomes Accessible 3 Beyond Cookies 4 West Virginia Accessible Recreation 4 New Hampshire Rates Restaurants 5 Ice Hockey and Equal Access 5 Tennessee UCEDD Supports the Arts 6 Idaho Playground Enjoyed by All 6 Independent Evaluation 7 A Chance Connection 8 FY 2006 PPRs 9 Spotlight on Self-Advocates 9 Spotlight on ADD Staff 9 P&A Conference Builds Skills 10 ADDed Resources 11 PAGE 2 Last Call: ADD Photo Library “All too often, pictures of people in wheelchairs are the only media images of the disability community. We’re trying to change that, and we need your help.” This is your last chance to have YOUR program and clients represented in ADD’s display poster and other projects. We’re still in need of grantee photos to use in a variety of publications. By submitting your photographs, you will receive National exposure for your projects, and you will help us to build a photo library that portrays individuals with developmental disabilities in a manner that is positive, inclusive, and culturally diverse. All too often, pictures of people in wheelchairs are the only media images of the disability community. We want to change that, and we need your help. The images you send us will be used in newsletters, brochures, annual reports, posters, websites, and other informational materials. A reminder of what we need: • We are happy to receive and use any high-quality photos, but we are currently in particular need of photos that illustrate inclusive transportation, health, child • Photos should be digital, and sent as a JPG ocompatible dimensions are 375 x 300 pixels. • Please include a brief caption or descripnames of people pictured, location, and description of activity as appropriate. • Of particular interest are photos that show community inclusion and activities engaged in by both individuals with disabilities and their non-disabled peers. • Be creative. Send us pictures that tell a story. Photos must be accompanied by a waiver signed by the individual(s) pictured, granting permission to ADD and its grantees to use the images. If the individual is a minor or has a guardian, the are welcome to use your own our standard waiver for your use. That waiver can be obtained by contacting Rebekah Yeager (rebekah.yeager@acf.hhs.gov) The deadline for photos is February 24, 2007. An extension for waiver forms can be arranged if necessary. Wyoming UCEDD helps people SOAR Programs in Wyoming allow citizens with disabilities to experience their first rafting trip. The Wyoming Institute for Disabilities (WIND) recently sponsored the Sports & OutdoorAssistive Recreation (SOAR) Project, which was designed to increase the ability of individualswith developmental disabilities to take part in outdoor recreational activities. WIND formed partnerships with nine community parks and recreation departments with the purpose of including persons with disabilities in existing recreational programs. These recreation departments assisted in demonstrating assistive recreational equipment at a demonstration day and received staff training to accomodate persons with disabilities so that inclusion of people with disabilities into recreation programs continues throughout the state. This story was submitted by the Wyoming Institute for Disabilities. For more information, see http://wind.uwyo.edu/wind/default.asp FEBRUARY 2007 PAGE 3 Exploration in Utah Becomes Accessible SPLORE, a Salt Lake City, Utah, nonprofit organization, was recently awarded a $30,000 matching grant by the Utah Developmental Disabilities Council for the second year of a pilot program providing inclusive outdoor recreation experiences to children with disabilities in Utah elementary schools. The pilot program, called “The Experience Your Abilities Program,” creates opportunities for elementary age students with disabilities to develop social relationships with their peers without disabilities by participating in inclusive outdoor recreation activities together. The Experience Your Abilities Program helps the public school system to provide a positive educational experience, both academically and socially, to students of all abilities. The program opens the door for inclusive social interactions between students with disabilities and students without disabilities. By participating in safe, fun and challenging outdoor recreation activities together students are able to have a shared experience and find a commonality with one another. Evaluations from the first year show the program is highly effective in fostering: healthy social relationships; higher self-concept; sensitivity to the needs of others and positive behavioral changes. In the words of C.H. Taylor Elementary school teacher Shauna Iverson, “I felt that the regular education students gained an understanding that the special education students are just like them. They were more receptive to my students throughout the halls and within the school environment. My [special education] students were able to interact with their regular education peers. They felt welcomed and equal.” Last year, during the first year of the program, SPLORE provided 180 activities to 280 students from 21 schools in four local districts. Activities included: hiking, indoor and outdoor rock climbing, snowshoeing, cooperative games, adaptive cycling, equestrian activities, and exploration of local nature centers. This year, SPLORE will provide services to twenty-five classroom groups with 812 students per group. Each group will have the opportunity to participate in four outdoor recreation experiences together over a one-month period. The $30,000 grant from the Utah Developmental Disabilities Council is matched by an additional $30,000 that is being raised by SPLORE via individual donations, fundraising events, corporate support, and private foundation grants. According to Claire Mantonya, Executive Director of the Utah Developmental Disabilities Council, SPLORE was awarded this grant because, "as an advocacy organization, we strive to create a community that lets everyone participate. When you start with kids and teach them to include their peers, we are changing the world for everyone." SPLORE is privileged to partner with the Utah Developmental Disabilities Council which has provided both the impetus and the matching funds necessary for implementation of this unique program. This story was submitted by the Utah Deveopmental Disabilities Council.. For more information, please see http://www.gcpd.org/. PAGE 4 Beyond Cookies: Scouts Learn About Disabilities Scouting troops and other child-centered groups are intended, first and foremost, to nurture potential, build character, and teach skills for the real world- skills that will be useful long past childhood. In Indiana, a simple program was developed to teach girl scouts disability awareness right along with outdoor skills and other scouting lessons. The Indiana Governor’s Council for People with Disabilities worked with the Girl Scouts of Hoosier Capital Council to create "People Just Like You" a patch program to help scouts understand the importance of inclusion, appropriate ways to interact with people with disabilities and to discuss disability issues. The booklet provides troop leaders with 12 simple, creative activities that can easily be done with the girls; scouts can earn a disability awareness patch by completing various projects and activities described in the booklet. The activities are focused around topics such as inclusion, people-first language, accessibility and barriers, adaptive equipment, different ways to communicate, and more. The program has the potential to touch thousands of Hoosier Scouts every year, and would be easily replicable by Girl Scout Troops and any number of other groups across the Nation. Information for this story was submitted by the Indiana Governor’s Council for People with Disabilities. For more information, see http://www.in.gov/gpcpd/ West Virginia Accessible Recreation Conference The West Virginia Accessible Recreation Conference and Expo was held November 7-9, 2006, in Morgantown, West Virginia. The three-day event included information for individuals with disabilities, older adults, families and recreation professionals, including planners and therapists. The Conference and Expo was more than just an avenue to information and resources; it provided opportunities for participants to try out various pieces of recreational equipment and to see demonstrations of what is possible for anyone, regardless of age or ability. The Conference and Expo was sponsored by West Virginia Assistive Technology Systems (WVATS), the State Assistive Technology Plan for West Virginia, a program at the Center for Excellence in Disabilities (CED), a part of the Robert C. Byrd Health Sciences Center at West Virginia University. Planning partners included the WV Parks and Recreation Association, WV Division of Natural Resources, Challenged Athletes of WV, Eastlake, Derry & Associates, CED Fine Arts Program, Adventure Pursuit and WVU Office of Disability Services and West Virginia Real Choice. This story was submitted by the UCEDD, WVU Center for Excellence in Disabilities.. For more information, see http://www.cedwvu.org/ FEBRUARY 2007 PAGE 5 New Hampshire Rates Restaurants A good meal enjoyed with family and friends is one of life’s simple pleasures. From first dates to birthday dinners, restaurants are often a central part of celebrations and social interaction. However, when people with disabilities talk about not being able to get into a restaurant, they’re not always discussing the difficulty of getting a reservation on a Friday night. From parking to restroom access, inaccessible establishments can create barriers that prevent diners from enjoying a family celebration or the best filet mignon in town. The Disability Rights Center (DRC), New Hampshire’s P&A, is working to improve the restaurant experience for diners with disabilities. The Rolling Gourmet, launched in 2005 offers diners with disabilities the ability to review restaurants and have their reviews publicized for other diners to access when choosing a restaurant. It has proved to be a popular program, and 175 New Hampshire restaurants have been rated so far. This is not only a guide for accessible dining, but also serves as encouragement for restaurants to become fully accessible. The interactive guide to restaurant accessibility allows patrons to rate a restaurant in multiple categories, including: • parking • getting into the restaurant • inside access • restroom access • Accommodations • overall experience For more information, see http://www.drcnh.org/restaurant.htm. Ice Hockey and Equal Access In Alaska, winter sports are one of the prime sources of entertainment and recreation. With the help of the Alaska P&A, “Sam,” a college student, made sure that all Alaskans continue to have access to sports facilities across the State. Sam attends classes at his local university. When he isn’t in class, or studying, you might find him rock climbing. He might be downhill skiing, or cross-country skiing. Sam was also interested in starting up an amateur ice hockey team. Unfortunately, the plan to start the ice hockey team had met with no small obstacle. Sam has Cerebral Palsy. He would not be able to play ice hockey on traditional skates. However, an accommodation would make it possible for him and his potential teammates to engage in the sport. A skate sled (a sled with runners on the seat, similar to ones used in the sport of Para Olympic ice hockey) would allow Sam and his friends access to the sport of ice hockey. The local, and most easily accessible, ice arena had denied Sam and his friends the use of the skate sled during open skate times, citing safety concerns. Sam contacted the Disability Law Center of Alaska, the State’s P&A. The agency helped Sam file an equal rights complaint with the municipality’s equal rights commission. At the hearing, Sam and the attorney representing the local ice arena were able to come to a meeting of the minds. The attorney relented, saying that if the metal edges of the sled were covered to reduce the chance of injury, the arena could review their policy and allow some use of the sled. Wishing to skate rather than litigate, Sam agreed to cover the exposed metal parts of the sled with pipe insulation. The sled is currently undergoing its minor transformation to allow Sam and his friends to participate in yet another sport previously closed to them. Submitted by the Alaska P&A.. For more information, see http://www.dlcak.org/ PAGE 6 Tennessee UCEDD Supports the Arts A Tennessee woman has the opportunity to express herself through art. Submitted by Jan Rosemergy, Ph.D., Director of Dissemination January 24, 2007 Since 1994, the Vanderbilt Kennedy Center (Nashville, TN) has sponsored exhibits of art by children and adults with disabilities in order to demonstrate the diverse talents of individuals with disabilities. Most exhibits are organized in partnership with disability organizations—local, state, national, and international. Often works are offered for sale, providing income for the artists. In 2006, the Center partnered with Full Circle Art, a group of independent artists, to hold inclusive workshops for youth and adults. Together they collaborated to create art, which culminated in an exhibit “Common Ground.” The workshops included drumming, movement and dance, and nutritious snacks. For several summers, the Vanderbilt Kennedy Center has collaborated with national and local disability organizations to hold day camps focused on building specific skills but also including recreation and art. The Frist Center for the Visual Arts has been an annual partner for Explorers Unlimited Academic Camp for students with Down syndrome. The Frist Education staff provides art instruction, which each year is related to a major exhibit and culminates in a field trip to the Frist Center to view the exhibit. Work created by campers has been exhibited at the Vanderbilt Kennedy Center, as well as at the Frist Center. Music instruction also has been incorporated into camp curricula, taking advantage of Vanderbilt’s Blair School of Music and Nashville’s rich music resources. Teens and young adults with Williams syndrome who attend the annual Music Camp work with professional songwriters and musicians to write and record an original song, which is performed live at the Grand Ole Opry. http://kc.vanderbilt.edu/ Idaho Playground Enjoyed by All Children at play in Idaho Access to community recreational opportunities for people with developmental disabilities continues to be a priority for the Idaho Council on Developmental Disabilities. During the past two years Council funds have been awarded to a project to develop Idaho’s first universally accessible playground. Children of all abilities and ages as well as adults, have been playing on “The Grand Voyage” at Adventure Island Playground. Located in Meridian’s Settler’s Park just outside of Boise, Adventure Island makes available exploratory and physical play opportunities. The playground would not be possible if it were not for the donation of 5 acres of land from the Meridian Department of Parks and Recreation. In its present state, the playground is approximately 75 percent complete while a community volunteer planning team continues to raise the remaining necessary funds. Information is available at www.adventureislandplayground.org. PAGE 7 Independent Evaluation Update The purpose of this update is to provide current information about progress on the Independent Evaluation . The independent evaluation is a project being carried out by Westat to examine the impact of the State Developmental Disabilities (DD) Network programs on the lives of people with developmental disabilities and their families. As described in previous Updates, the focus of Westat’s work in the first year was on developing DRAFT performance standards for each ADD grant program (DD Councils, P&As, and UCEDDs), as well as for collaboration. To do this, Westat convened working groups for each of the ADD grant programs (DD Councils, P&As, and UCEDDs), as well as a collaboration working group to gather information for developing the draft performance standards. Through the working groups, Westat compiled a large amount of information on the ADD grant programs and on collaboration. Project staff has spent the past several months analyzing this information and organizing it into draft performance standards. Westat is now nearing the end of this process and plans to have the draft performance standards completed in February. Westat’s next steps will be to get input on the draft performance standards from a variety of sources, including the grantees, validation panels, and ADD. Input from the grantees will be obtained at each grantee’s technical assistance meeting and through followup conference calls. The P&A Technical Assistance Meeting is scheduled for March 12 – 16 and the DDC Technical Assistance Meeting is scheduled for June 11 – 12. The UCEDD Technical Assistance Meeting has not been scheduled but is expected to take place at the end of May. At each of the meetings, Westat will provide information about the process used to develop the draft performance standards and plans for next steps. They will also orient grantees to the draft performance standards. This orientation will set the stage for subsequent conference calls Westat will schedule for grantees to provide feedback on the draft performance standards. In addition to this process, Westat will be presenting the draft performance standards to four validation panels. There will be a validation panel for each DD Network program (Councils, P&A Systems, and UCEDDs) and a separate panel for collaboration among the three network programs. Each panel will contain up to eight members consisting of individuals with developmental disabilities, family members, advocates, researchers, representatives from the DD Network, and policy specialists. The validation panels will review the draft performance standards developed for the DD Network programs and confirm whether the proposed standards accurately measure program performance and impact. This project continues to keep us busy, and Westat is making good progress on their work. ADD will continue to keep you informed on the Independent Evaluation project through the ADD Update. In the meantime, if you have questions about the activities being carried out through this project, please contact Jennifer Johnson at 202-690-5982. PAGE 8 A Change Connection: Promoting Inclusive Communities in Delaware Participants in the Community Connectors Program Enjoy a Tailgating party “We can show the community that we are people, too, and that we are capable of doing just as much as anyone, and this helps break a lot of barriers.” The Center of Disabilities Studies at the University of Delaware aims to facilitate community inclusiveness for people with disabilities through a program called Community Connectors. Since 2003, Community Connectors has partnered with adults with disabilities, helping them pursue personal interests and become involved in their communities. Community Connectors is built on two programs: the Individual Program and the Group Program. Participants in the Individual Program create personal goals, make plans to achieve those goals, seek out opportunities of interest, and engage in activities. For people who want a less structured experience, the Group Program provides a wonderful opportunity to socialize and gain new experiences. Twice a month, adults with and without disabilities join together at a variety of events – from movies and football games to volunteering and pottery classes. Elizabeth Nolan, 19, is a member of Community Connectors.. “You go out, you meet new people, you make friends,” says Ms. Nolan, who is pursuing dance opportunities through the Individual Program. For group activities, she enjoys off-Broadway shows and volunteering in the community. Blake Bossert, 21, also enjoys volunteer work, such as delivering lunches to a Habitat-for-Humanity worksite. “I want to help people. It’s one of the things that motivates me,” he says. “I feel like I am making a difference, and that’s my drive. If I can change one person’s life, I’ve made a difference.” Perhaps most importantly, Community Connectors helps foster understanding.. “We can show the community that we are people, too, and that we are capable of doing just as much as anyone,” says Mr. Bossert. “And this helps break a lot of barriers.” So here’s to broken barriers – and the connections that form in their place. This story was written by Johanna Homan and submitted by the Center for Disabilities Studies, University of Delaware. www.udel.edu/cds FY 2006 Program Performance Report FY 2007 Statement of Goals and Priorities (SGP) We are glad to report that 95% of Councils and 98 % of PADDs submitted their annual Program Performance Reports on time, along with 89% of PADD SGP reports. We would like to thank you all for your hard work in submitting those reports in a timely manner. ADD has been reviewing and approving the reports as they were received and planning to complete the reviewing and approving by end of Feb 2007. These approved reports will then be available for view only at OLDC. As of now, you will be not required to select Funding/Grant period for creating or accessing your reports; you will be only using actual reporting dates. Please contact Syed Rafiuddin, srafiuddin@acf.hhs.gov, for any OLDC related questions. ADD UPDATE PAGE 9 FEBRUARY 2007 Spotlight on Self-Advocates As a person with a physical disability, who enjoys a combination of country and city life, I feel blessed to have found the unique opportunity of exploring the Pennsylvania Rails-to-Trails. Any time my husband (who is also a wheelchair user), daughter and I want to take a “walk in the county” we find the nearest Rails-to-Trails path, walk through the woods or along the Susquehanna River and we no longer feel the pace of the city in which we live. The conversion of former railroad corridors into public use trails is especially wonderful because many of these trails are designed to be accessible for individuals who have limited mobility and users of mobility devices as well as bicyclists. We as a family, join millions of outdoor enthusiasts who now enjoy a growing network of Rails-to-Trails. The Pennsylvania Department of Conservation and Natural Resources, local Rail-Trail organizations, counties, townships, and municipalities have acquired, designed, constructed, and are managing and maintaining Rail-Trails in every region of the Commonwealth. From small villages in rural areas to larger cities in highly urbanized centers, volunteers have come together to make the Pennsylvania Rail-Trail Program a national leader. \ My first experience with Rails-to-Trails was in college in the early 1990’s when a trail was being developed in Northwestern Pennsylvania. I and a few other friends of mine who have a disability were asked to test the materials used on a trail that was being developed in a town near our college campus. These experiences lead to my interest in equal access for people with disabilities. Now I am a Team Leader with Pennsylvania Protection & Advocacy (PP&A) where we advocate access for people with disabilities to recreational opportunities across the state. Article by Pam Auer. For more information, see www.ppainc.org Spotlight on ADD Staff In an effort to ensure that our grantees know our staff, ADD is pleased to announce that as a new regular feature, we will highlight a member of the ADD team in each issue of the ADD Update. We realize that not all staff members interact with all grantees on a regular basis, and hope that this new feature will help our grantees become familiar with our staff, and more comfortable contacting the appropriate team member with any issues or questions that may arise. Program Specialist Shadetra Robinson has been with ADD since April 2006. With a solid background in case management and special education, she has an undergraduate degree in psychology from Delaware State University, and a Master’s degree in Educational Psychology from Howard University. Shadetra works primarily with the UCEDD team, and is closely involved with 22 UCEDDs on a daily basis. She is also collaborating on the new ADD/UCEDD website with AUCD. A New Jersey native, Shadetra has been in the DC area for almost five years, and currently commutes to ADD’s offices in DC from her home in Baltimore. She also has a passion for community involvement and working with youth; in addition to her job at ADD, she serves as a rehabilitation counselor in Baltimore, helping children from ages 6-13 learn social skills, improve self-esteem, and manage behavioral problems. FEBRUARY 2007 PAGE 10 P&A Conference Builds Skills On January 9-11, the 2007 P&A Skills Building conference took place in San Diego. Energy at the conference was built up with two plenary sessions that featured stars in the disability field. The conference started with welcoming addresses and with an exciting talk by Gwen Gillenwater on the future of Medicaid. Gwen is the former Senior Director of Policy and Outreach for the American Association of People with Disabilities (AAPD), and was appointed by Secretary Leavitt to be a voting member of the Medicaid Commission. Thursday morning, conferees got more high energy from Peggy R. Mastroianni, Associate Legal Counsel for the Equal Employment Opportunity Commission, who spoke on ADA (now 16 years in force), with a constellation of examples of how definitional limitations in ADA came be overcome. A feature of this conference was four whole-day “Institutes” for more intensive learning of specific issues: • Negotiating and Mediating Transition Issues... P&As helping people with disabilities to transition into the adult world of work. • Legal Directors’ Meeting... a discussion of issues they are facing. • PATBI Grantees’ Meeting... a discussion of P&A efforts for people with Traumatic Brain Injury. IDEA for non-attorney advocates Additionally, four half-day “Institutes” explored education issues and children: • Systemic LRE – Case Law and Policy Approaches • A Review of the New IDEA Regulations • Restraint and seclusion in schools • Interviewing children with disabilities Additionally, the conference featured workshops in specific areas of concern: Areas of Emphasis: • Employment • Education • Community integration • Managed care services • Housing • Transportation • Quality Assurance Strengthening the P&A: • Marketing P&A services... getting the word out on this great resource. • Outreach to underserved and unserved communities... Deaf community, Vietnamese and Chinese communities, and veterans Legal Issues: • E-Discovery... best practices and practical advice for attorney’s facing an electronic world • P&A access authority... successes and challenges • Structured negotiations instead of litigation • Litigation issues • Legal ethics Justice Issues: • Criminal justice... what kind of justice does the criminal justice system mete out to persons with disabilities. • Incompetence to stand trial • Juvenile justice... what happens when jails substitute for supports in school. • Reentry from jails and prisons Other critical issues: • Emergency preparedness. • Voting issues • Termination of parental rights • Sex offender laws • Guardianship • Assistive technology • Monitoring of DD facilities... with practical advice and a review of tools for monitoring DRA: maximizing community options There was a lot of learning going on in San Diego that week! Administration on Developmental Disabilities Administration on Children and Families U.S. Department of Health and Human Services Mail Stop: HHH 405D 360 L’Enfant Promenade, S.W. Washington, DC 20447 Phone: 202-690-6590 Fax: 202-690-6904 E-mail: Rebekah.yeager@.acf.hhs.gov The American dream belongs to everyone. ADDed Resources State Pandemic Flu planning information: The next ADD Update will focus on accessible housing and increasing the ability of individuals with developmental disabilities to live where and with whom they choose. Please send us your stories and program descriptions by February 15th, and tell us what you’re doing to expand the availability of accessible, affordable housing. We’re also looking for self-advocates to profile. If you know of a self-advocate with a story to tell, please nominate him or her by sending an email to Rebekah Yeager at Rebekah.yeager@acf.hhs.gov. http://www.acf.hhs.gov/ programs/add http://www.pandemicflu.gov/whereyoulive/index.html Surgeon General’s call to action to improve the health of individuals with disabilities: http://www.surgeongeneral.gov/library/disabilities/calltoaction/whatitmeanstoyou.html