Our Annual Partners In Care Conference continues to be a source of information and support for families, educators, and health care providers. The Parent to Parent/Children with Special Health Needs sponsored conference is an effort to bring together for discussion, families, educators, health care providers, researchers, and community members to inform each other and work together to support children with disabilities and their families in communities.
Each year we try to offer workshops for everyone - families new to Parent to Parent and educators and health care providers looking for tools to implement family-centered practices. For many it is a day of reflection and connection. Participants always comment on the importance of this time to learn from each other, share experiences, celebrate successes and consider possibilities.
The Keynote
Our keynote was the unfolding of a conversation between parent and author, Janet Vohs and researcher Carl Dunst about belonging and the power of reflection. As with any conversation it had no conclusion but was meant to illuminate the themes of community and belonging. Janet and Carl shared powerful commonalties about their experiences. Janet noted that consciousness precedes action and allows you to see the world differently. "Twenty-six years ago when my daughter, Jessica, was diagnosed with cerebral palsy the culture of the time was that this was a terrible thing that had happened. There was no early intervention and I was told to come back in a year. Books and articles I read were about coping - I would learn to cope, they said, which to me connoted a sense of putting up with, or enduring, an undesirable situation."
Carl commented about his work with community programs and the difference between how they view children with disabilities and how professionals, in their attempt to "fix" children with disabilities may see a person with a disability differently. In communities "people see children as having challenges not needing to be "fixed" but rather needing to learn a skill in order to participate. Communities see their role as that of 'coach.'"
Janet spoke about research published in the Journal of Rehabilitation that illustrated the pervasiveness of assumptions and how they affect our day-to-day perceptions. The study reported stresses of 20 children with physical disabilities (ages 8 to 15) compared with their mothers' beliefs about what stressed their children. There was a wide gulf between mother's and children's perceptions of what is stressful. The mother's concerns were with how their children differed from the norm, and they identified the disability itself as the source of stress. This same perspective was shared by many of the professional helpers. The children did not express concern about "being different" nor did they dwell on things they couldn't do. Research found that the children were stressed about academics and social interactions.
According to Janet, "our assumptions are so pervasive, so present that we may be acting on assumptions rather than fact. We perceive situations as uncomfortable because it is uncomfortable for us." Carl talked about research he had done to look at the extent to which families with children with disabilities experience stress. His study found that it wasn't the disability that was the source of stress but the discrepancy between what the child's life was like and what the family wanted their child's life to be like.
Are we creating differences? In communities people talk about child strengths and capabilities. How do we choose to view the world and how do we choose to view the children we work with? Is it a real or perceived difference? Knowing the difference between the problem and the one we create is a fine line. "I would suggest we be careful about using a fix-it model and one of community because they don't fit well together," according to Carl.
"If we don't listen, if we're not astute to listening we won't know the real problem. What I suffered with Jessica wasn't the disability but the meaning that was attached to it. It has strong implications for belonging. Hardest is the attitude, the assumptions, how people talk, all the subtle things that happen in our culture."
Something changed for Janet one day. During a quiet moment - a moment of reflection, "I saw my daughter and realized a mood of sadness I hadn't seen before. I thought what is this about? I have an adorable little girl, the sun is shining, we were well fed, sheltered. The circumstances of our life were ok but there was a level of sadness and I realized I didn't have to be sad. In having the freedom to reflect something happened. I separated the fact of disability and the meaning that had been attached to it. It opened the door to the possibility to choose new descriptions to what it could mean. Families live with inherited meaning. If disability is an ordinary part of life, there is no need to cope."
The Yeast Packets...
"A TV cooking class on making bread supplied an interesting metaphor that I have found useful for thinking about notions of disability in our society and where they come from. In fact, the anecdote has helped me think differently about what there is to cope with. In Europe, years ago, castles and homes were built with a small enclosed room used for making bread. Today after generations of making bread in these rooms, it is unnecessary to add yeast to the bread dough. The yeast culture simply lives in the air and leavens any dough that happens to be placed there. For the most part, I have come to see our assumptions and presuppositions as invisible - like the yeast, part of the air we breathe. We do not consciously choose them or invent them: Philosophers have described them as "inherited." As I envision it our "culture," instead of little yeast bacteria, is made up of millions of sentences, metaphors, and stories about life that we have learned to call true. And although the conditions that make the sentences and stories seem like the truth frequently change, they usually linger in the cultural atmosphere long after their usefulness has been exhausted."
The Workshops
In the Beginning... Building a Partnership with your Child's Primary Health Care Provider - Lewis First, M.D., Professor and Chair, Department of Pediatrics at the University of Vermont facilitated a discussion about family and physician expectations. They generated a list of expectations in their group of over 50 families and health care providers. Call us if you want a copy.
Two of our workshops looked at the importance of community programs for children with special needs and their families. One forum, Community-opoly was an experimental game similar to monopoly. Using a room-size game board community representatives "on the board" answered questions from "families" about their programs, giving everyone a glimpse at the array of community programs available throughout Vermont. Sally Wade from Florida and her colleagues designed this interactive, informative process for learning about programs and activities in communities. Encouraged by enthusiasm from those who participated, we are looking into purchasing this "game" as a way for families and communities to learn about each other! Building Community Resources was another workshop at our conference focusing on community programs as learning environments for children and their families. This project is highlighted on page 8 of our newsletter.
Participants in our workshop, Ingredients for Inclusion: Leadership, Collaboration and Teaming informed us that the issue of inclusion needs to be revisited each year at our conference. Responses from participants emphasized the importance of having conversations in communities- hearing from families, educators and administrators about ways to make inclusion work. Susan Hasazi, Professor in the Department of Special Education and Associate Director of the University Affiliated Program of Vermont (UAP) discussed promising practices for including children with special health care needs in the classroom. You can hear more about Susan's research on inclusionary practices and learn about programs and studies being conducted at the University of Vermont by the UAP at http://www.uvm.edu/~uapvt/
Jan Keffer, Principal at Essex Elementary and Founders Memorial Schools shared her top ten list of elements of inclusionary schools with workshop participants while Mary Gill talked about the importance of a team approach as an essential ingredient for inclusion. Liz Jordon-Shook spoke eloquently about her role as a member of her son's team and encouraged families "to be involved; to realize you are an equal partner in your child's education, to share with school teams your hopes and dreams for your child- sometimes you have to be direct and find ways to regularly be in touch with your child's school - have a presence." She reminded families that "you are the constant in your child's life. You know your child best." ©
Next Steps for Inclusion
By next year's conference, decisions will have been made that will affect your child and family. ACT 60 Equal Educational Opportunity Act needs your vigilance! We have reason to be concerned about how Act 60 will impact your child's education. Vermont Coalition for Disability Rights is following this legislation and summarized the most recent decisions taking place in Montpelier. As the House Appropriations Committee put the finishing touches on the state's Fiscal Year 1999 Budget the following decisions were made: under great pressure from the Governor and his staff, the full Senate voted to apply a cap on state spending for special education. The cap is set to begin in the year 2000. This action took place in H.577-Act 60. They also approved the formation of a special education cost containment "Blue Ribbon" panel to look at how special education is funded, and a fiscal review panel that would provide technical assistance to school districts to help them look at their special education services. We encourage you to contact your local school district to find out how Act 60 will effect special education in your town. Vermont Coalition for Disability Rights publishes a bi-weekly update while the legislature is in session. To be added to their mailing list, write or call Vermont Coalition for Disability Rights, 73 Main Street, Room 402, Montpelier, Vermont 05602 Phone, V, TTY (802) 223-6140, Fax: 223-2132 or email: vcde@plainfield, bypass.com
Vermont Parent Information Center and Parent to Parent are collaborating on an effort to identify families throughout Vermont to talk with legislators about their child's special education. It is our hope that each legislator will have an opportunity to listen to and learn from their neighbors about special education and the need and importance of adequate state funding of special education. You will be hearing more from Parent to Parent and VPIC about steps you can take to ensure all children with special needs receive the supports they need at home, in school and in the community.
Your voice is needed federally as well. Senator Jeffords is leading his peers in a resounding commitment to ensure the continued growth in federal funding to support Special Education Programs nationwide. Senator Jeffords, Chairman of Labor and Human Resources covering disability, education, and health, is one of our strongest allies and is advocating for a goal to provide 40% of the excess cost of educating children with disabilities by 2004. During a recent press conference in Washington, Senator Jeffords expressed his concern about the Clinton Administration's lack of support for special education. For the most current information on IDEA and an opportunity for you or your child to advocate for special education we encourage you to be in touch with The National Parent Network on Disabilities at 1200 G. Street N.W., Suite 800, Washington, D.C. 20005 or call (202) 434 8686, FAX (202) 638 0509 or e-mail: npnd@cs.com. Their WEB site is http://www.npnd.org. You may also call us at Parent to Parent 1-800-800-4005 and we would be glad to put NPND in touch with you! ©
The Next Conference
Save the date! Friday, Dec 4. 1998
Our 1998 Partners In Care Conference will be held at the Sheraton Hotel and Conference Center in Burlington. Our keynote speaker will be Peggy Mann Rinehart, parent, writer, researcher, and mentor to families and professionals nationally. More info in our next newsletter!
Partners In Care Award
Each year at our Partners In Care Conference we honor an individual who exemplifies and promotes the ideals of family-centered care. Mark Sustic, this year's recipient, was honored because of his leadership and commitment to the ideals of family-centered care and for creating a culture of belonging in Franklin County by building partnerships at the individual, community and system level. Mark's vision of Franklin County as a community that actively supports young children and families has held agencies, programs, projects, and individuals on a steady course of improvement and renewal. Colleagues Ruth Dennis and Julie Benay, wrote in his citation that, "Mark isn't afraid to talk about love, to mention morality, to ask us to consider basic principles of ethical conduct." In honor of Mark and in recognition of his love for music and dance, Very Special Arts Vermont will establish, in the Fall of 1998, a New Vision Dance Program in a Franklin County public school of Mark's choice. ©