Catalyst for Change News of the North Carolina Council on Developmental Disabilities WINTER 2010 Hefner Award Goes to Hines A key contributor to opening up education opportunities and provider of support services for people with intellectual and developmental disabilities is the 2010 winner of the Hefner Award. The Council honored Charles A. Hines for his work in establishing Beyond Academics (BA) in North Carolina, helping to give college experiences to young people with developmental disabilities. Hines, known to many as “Andy,” is the president of Charles Hines and Son, Inc., one of the largest providers of support services for people with disabilities in the state. The “son” in the firm’s name is Zeke Hines, Andy’s son who has a developmental disability and inspired the firm’s development. When he was unable to secure support services for Zeke, Hines recognized the need and took on the task himself. He left his post as an engineer and began hiring and guiding staff. Understanding the needs of individuals and families, Hines started the business, which now serves hundreds of clients in Winston-Salem and surrounding counties. The Beyond Academics program resulted from the work of a group of parents of children with developmental disabilities who saw the need for learning experiences after the high school years. The committee surveyed efforts across the nation and decided that a program based on a college model would be the best course. Hines was a leader of the committee which created the Beyond Academics concept and helped make it happen in cooperation with the University of North Carolina-Greensboro. An energetic and dedicated advocate, Hines provided financial support and generated additional backing. The NCCDD later provided a grant to help Beyond Academics move forward, and it has since expanded the length of the program and increased the numbers of people participating. “For his work on bringing Beyond Academics to North Carolina, his work as a parent advocate and his years as the leader of a provider agency, Andy Hines is truly deserving of the Hefner Award,” said BA’s Joan Johnson. The Jack B. Hefner Memorial Award was established in 1994 to celebrate the leadership of a man whose work inspired a generation of advocates and people with disabilities. Beyond Academics Recognized In a meaningful measure of the value of North Carolina’s Beyond Academics program, the innovative initiative has been accredited as a post-secondary education and support system by the Council on Quality and Leadership. This recognition from the prestigious Council gives added support for the program at the University of North Carolina Greensboro and is expected to encourage others to consider emulating this model. Beyond Academics Director Joan Johnson credited the NCCDD and its partner agencies for support, and said the accreditation is a victory for all the partners. “We will keep pushing to make sure that post-secondary options become the norm and not the exception,” she said. National DD Leader Visits NC North Carolina became the first state visited by Sharon Lewis after she was appointed to be the new commissioner of the Administration on Developmental Disabilities. She and other federal officials involved in health and human services issues were in Raleigh for a listening session on community living topics. Speaking of the new commissioner, NCCDD Executive Director Holly Riddle said her expertise represents what is needed at the federal level. “She has a values development approach, which is in great part born of her experience as a parent, as someone who has worked the halls of Congress, and from direct involvement with DD councils,” said Riddle. Commissioner Lewis was a key member of the federal team taking part in a stakeholder’s dialogue and listening session held with the Statewide Independent Living Council. “The new commissioner has experience working on family support and asset development, and is also an expert on secondary education,” said Riddle. “Sharon and I worked together on a national developmental disabilities councils statement on family support.” NC Health and Human Services officials, led by Dennis Streets, joined NCCDD staff in welcoming Lewis. A New 5 Year Plan Committed to creating a sound, positive blueprint for the future for people with intellectual and developmental disabilities, the NCCDD has reached out across North Carolina to gather opinions on needs, practices and goals. In addition to soliciting input from people with disabilities, families, professionals in the field and the public through media appeals and face-to-face meetings, the Council conducted an effective online survey. The opinion sampling brought more responses than ever before for the Council to consider in formulating a new five year plan to guide its activities in the years ahead. Over 800 responses were received in the two month period of the survey, and a large majority of the respondents, some 675 people, went on to complete the entire questionnaire. The information gathered will be used in evaluating the state’s progress in meeting the needs of people with intellectual and developmental disabilities and to create a draft of a new five year plan that will be distributed in February. After the plan is circulated for comments from the public, it will be put in final form and considered by the Council. Seeking Quality Health Care for People with Disabilities To help assure quality health care for people with disabilities in the future, the Mountain Area Health Education Center (MAHEC) is working to inform physicians and others as to the specific needs and preferred treatments. With a grant from the NCCDD, MAHEC professionals are pursuing several approaches to educating physicians on health care for people who have intellectual and developmental disabilities. Bruce Kelly, M.D., the MAHEC medical director, recently led an extended meeting to review strategies and the work plan of the National Curriculum Initiative in Developmental Medicine, a true advance. Irene Jurczyk, a vice president of the Center, and the project director, said this is a key component. “Physicians want to do the right thing when it comes to patient care, but there is significant information that wasn’t available when they were in medical school,” Jurczyk said. The Council grant also helped finance eight mini-fellowships for physicians to provide them with additional training in meeting the needs of people with disabilities. 2010 Partners Graduates Relate Experiences The North Carolina Partners in Policymaking program underlines a nationwide effort to equip people with disabilities and their families to become stronger advocates and to be more informed as they seek to influence public policy. Jennifer West, who has a disability, and Christopher Omohundro, a parent of a child with a disability, joined the program to improve the lives of others. “I am a person just like you,” said West, of New Bern. “I like to learn new things and become more independent, and I have dreams.” Omohundro, who is from Greensboro, became interested in the Partners program to better his daughter’s education. Once involved, he developed a passion for employment diversity and assisting others to overcome the challenges experienced by people with autism. “What I got out of Partners was so much more than I bargained for,” he said. “In all of you, I see a strength in the face of adversity, and triumph over incredible obstacles.” He hopes to build on what he learned, and in the end, improve his community. West, who was joined by her parents at the sessions, looks forward to the continued friendships and collaboration between Partners graduates and NCCDD staff. As a newly empowered self-advocate, she wants to be seen for her abilities, not her disability. Applications are being accepted for the 2011 Partners in Policymaking class. Applications are due December 31. Go to www.ncpartnersinpolicymaking.com Policy Specialist for Council Beth Stalvey, Ph.D., an experienced analyst of public policy, will now contribute her talents to furthering the work of the NCCDD. As public policy coordinator, Dr. Stalvey will assist the Council in evaluating the effects of various policy proposals and assessing different options. Having served the Texas and Georgia Councils on Developmental Disabilities, Stalvey will help give the NCCDD a stronger voice in shaping public policies regarding disabilities. Many Thanks to NCCDD’s Retiring Members Retiring members of the NCCDD reflected on the accomplishments they’ve witnessed and the ways the council has affected them and their own life experience. Sadie Brewington Barbour is the parent of a child with a disability, and has completed her second term. “I thought I knew a lot, but it strengthened me professionally,” said Barbour, who has been heavily involved in the Native American community. The council greatly expanded her awareness of the services that are available, and allowed her to help educate her own community about disabilities issues. Hailing from rural Clinton, in the southeast portion of the state, Barbour said there’s a definite lack of awareness of the services available to people with disabilities. In fast growing Cary, Dr. David Horowitz, has learned that advocacy isn’t as much about what he can do for his daughter, who has a disability, but what she can do for herself. Self-advocates have power to get out there and speak directly about the things they need, he explained. Horowitz joined the Council to expand his advocacy efforts for his daughter, who attends a special needs school in a different state. Dr. Horowitz has served on the Council for eight years. “Most people who are not directly connected with disabilities have no idea that this kind of group exists,” said Dr. Horowitz, who noted a similar lack of awareness among physicians. Politics and changing policy is a process of evolution, not revolution, the doctor said. “You get to be grateful for inches, rather than looking for changes of yards.” Partners Grad Wilson Joins Council Debra Wilson, an enthusiastic graduate of the North Carolina Partners in Policymaking program, is among the newest members of the NC Council on Developmental Disabilities. A resident of Richlands, a smaller community in the southeastern part of the state, Wilson has a daughter who is blind and also has other challenges. She was motivated to get active in fighting to improve conditions for people with disabilities when she learned that her daughter would need to relocate to Raleigh, more than a hundred miles from her home, for schooling suitable for people who are blind. “I learned so much from Partners and I want to help contribute to the work of the Council,” she said. Wilson was recently elected to the Executive Committee. Preparation of this newsletter was funded by the United States Department of Health and Human Services under provisions of Public Law 106-402. The contents do not necessarily reflect the position or policies of the US Administration on Developmental Disabilities or the North Carolina Department of Health and Human Services. Rossi Fund Update The NCCDD is announcing a new simplified process for applying for funding from the Jean Wolff-Rossi Fund for Participant Involvement, known as the Rossi Fund. Following months of work by staff, contractors and the fund’s project coordinator, Karen Stallings, people can make requests using an easier format. Funds are available for individuals with I/DD or their family members to cover specific expenses for seminars and conferences that are deemed to improve one’s knowledge, networking and skills for self advocacy, to improve the lives of people with developmental disabilities. Those receiving funds are expected to share their knowledge with the local community and the Council. Application for this funding can be found at nccdd.org/services/rossi_fund.html. Apply to be a Council Member Individuals with developmental disabilities or their family members are encouraged to apply to serve on the North Carolina Council on Developmental Disabilities. Details and application forms can be found at www.nccdd.org/council/members.html. A Time for Listening It appears that significant changes may be forthcoming in the governmental sector concerning policies affecting people with intellectual and developmental disabilities, and they are not likely to be limited to finances. While costs are always a major driver for change at both the federal and state levels, there are some who believe there are better ways of serving people with disabilities, giving them greater control over their own lives while improving efficiency. At the top of the NCCDD’s agenda is the development of a new five-year plan that will guide Council activities from 2011 to 2016. A key part of the information gathering process was an online survey of people with intellectual and developmental disabilities, parents and professionals. Just over 800 people responded, and of those almost 85 percent offered comments. I think this is a remarkable outcome, and I want to offer a heartfelt thanks to everyone who took the time to respond. This information will be very helpful in completing the plan based on priorities set by people in North Carolina. Through its grants, the NCCDD seeks to fund initiatives that can provide examples of forward thinking and truly help the people they are intended to serve. From “Advancing Strong Leadership in Developmental Disabilities,” which is working to prepare future leaders who will guide North Carolina organizations, to the “College of Direct Support,” which helps train Direct Support Professionals and raise their standards, while at the same time recognizing their contributions to our communities, these are important efforts. Together with the work of the Mountain Area Health Education Center and the Beyond Academics initiative, meaningful steps are being taken to build brighter futures for people with developmental disabilities. As the policy pot bubbles. NCCDD can provide a wealth of information on the topics discussed. With state and regional conferences, the Council works to build knowledge of how policies related to disabilities impact real people. I wish to thank Sadie Brewington Barbour and Dr. David Horowitz for their dedication and their contributions as they complete their service as members of the NCCDD. And, we welcome our new Council members who will help us move forward as we work to build better lives for people with developmental disabilities and their families. Sincerely, Robert J. Rickelman, Ph.D. Chairman, NCCDD North Carolina Council on Developmental Disabilities 3801 Lake Boone Trail, Suite 250 Raleigh, NC 27607 919-420-7901 www.nccdd.org If you would like a name to be added or removed from this mailing list, contact Cora Gibson at (919) 420-7901, or e-mail info@nccdd.org .