A Look at National Organizations Supporting Families OSEP supports a number of organizations that specialize in providing support, services, and information to families of children with disabilities. The goal is to better prepare families to participate in their children's education. PACER Center: Providing Support for Families to Participate in All Phases of Their Child's Education "In schools where family involvement is valued, you will find more trust and fewer disagreements," says Sue Abderholden, Associate Director of the Parent Advocacy Coalition for Educational Rights Center (PACER). Abderholden stresses that family involvement is not always easy due to misconceptions and lack of understanding. "School personnel need to understand that parents will fight for their child's success and happiness. Families want the best for their children, but they may not always know how to get it." "To be full partners with school personnel in implementing IDEA, parents must have information," Paula Goldberg, Executive Director, reports. "And parents should be involved in planning, developing, and disseminating that information." Founded in 1977, the PACER Center, which is supported in part by OSEP, is a parent training organization that is based on the concept of parents helping parents. "PACER was created by parents of children with disabilities to help other families facing similar challenges," Goldberg says. Today, the PACER staff, which consists primarily of parents, provides a variety of services including parent training, publications, and technical assistance on topics such as General special education information. Early childhood intervention. Multicultural services, including language and cultural issues faced by culturally and racially diverse parents of children with disabilities. Transition to adult life. Juvenile justice and identifying the needs of youth with disabilities in that system. Many of the publications— on the PACER web site at www.pacer.org— available in Spanish and Hmong, as well as English. In addition to being a parent information center itself, PACER also directs the OSEP-funded Technical Assistance Alliance for Parent Centers (the Alliance), which provides technical assistance to the 90 federally funded Parent Training and Information Centers (PTIs) and Community Parent Resource Centers in each state. "These centers provide training and information to parents of infants, toddlers, children, and youth with disabilities and to professionals who work with children," Abderholden explains. "This assistance helps parents participate more effectively with professionals in meeting the educational needs of children with disabilities." [The toll-free number for the Alliance project is 888-248-0822 and the web site is www.taalliance.org.] PACER was recently awarded one of the OSEP IDEA Partnership Projects. Called FAPE (Families and Advocates Partnership for Education), the project links with other parent training information centers and national organizations to inform families and advocates about IDEA. Visit the FAPE website at www.fape.org. FFCMH: Involving Families in Systems Change During the past decade, many child service systems have evolved from being family focused to being family driven. Rather than treating families as the object of an intervention, the emphasis now is on building a collaborative working environment where families are respected as the change engine driving both system reforms and better outcomes for individual children. "Family involvement for systems change means actively reaching out to engage, train, and support family members representative of the children enrolled in or served by a system, agency, school, or program so that their experiences and perspectives collectively drive policy and service planning, implementation, and evaluation," explains Trina Osher, Coordinator of Policy and Research at the Federation of Families for Children's Mental Health, a national family-run organization focused on the needs of children and youth with emotional, behavioral, or mental disorders and their families. "With appropriate training, family members and family-run organizations are increasingly partnering with formally trained personnel in school and community settings to run service programs and systems." According to Osher, true family involvement has several key features: Family involvement is a collective effort requiring representation from all cultural, ethnic, and racial groups in the community in numbers sufficient to allow each a real voice, with no one voice dominating. Family involvement requires that systems, agencies, schools, and programs provide family members with information necessary to participate in discussions and the tools to understand this information and make decisions (for example, they are given opportunities to learn how to read and interpret a wide range of reports, budgets, charts, and policy options that document what is going on, what is working well, and what needs to be changed; they are provided with essential information prior to a discussion). Families must receive fair compensation for their time and for the expenses incurred in being involved (for example, stipends to replace lost wages or sacrificed vacation time, pre-paid transportation, and child care). Families must have respect and recognition from administrators and service providers with whom they partner. Developing this respect is a mutual responsibility. System personnel need to replace stereotypical images of families as being "dysfunctional" with realistic appraisals of their strengths, skills, talents, and the contributions families can make to system improvements. Family members, in turn, need to transform their negative experiences into constructive dialogue with system personnel to define solutions to address these issues. Families and system personnel must learn how to share both the power and responsibility for making decisions together. Families need training and technical assistance to develop the skills necessary for leadership and partnership for system change. Specific training needs must be identified by families, and training programs, materials, and activities should be tailored to their learning and cultural preferences. While training should be driven by families, experts and authorities from related fields should collaborate in curriculum development. To support families in carrying out the roles and responsibilities associated with this new approach to family involvement, the Federation of Families for Children's Mental Health provides training that enables family members to participate effectively as leaders in research and evaluation, staff development, and technical assistance. One of the Federation's programs, the World of Evaluation: How to Make It Yours, offers training to family members in how to use and participate in evaluation and research for advocacy purposes. "The course was developed in response to needs identified by families of children who have emotional and behavioral disorders who wanted to know how they could tell when the results of research on children's mental health were reliable and applicable to their own children or children in their community," Osher points out. NICHCY: Accessing Information When It is Needed "The need for information is ongoing for families," reports Suzanne Ripley, Director of the National Information Center for Children and Youth with Disabilities (NICHCY). "All families want their children to be successful and happy in school. They call NICHCY to find out more about educational opportunities and how to get their children the services they need." While the type of information families need for infants and toddlers may be quite different than that for a child who is transitioning to adult life, Ripley asserts that in all cases parents need current and accurate information that is based on research and best practice. Funded by OSEP, NICHCY is charged with providing families with information to make informed decisions about their child's education. However, NICHCY also serves administrators, teachers, and related service providers. Ripley notes, "It's interesting that these different groups have similar questions— most common being 'How do I provide for the needs of a particular child?' " The three disability areas about which users have the most questions are autism, learning disabilities, and Attention Deficit Hyperactivity Disorder. "We also see a lot of interest in secondary schools and elementary schools, but receive fewer inquiries about the middle years." In addition to collecting and sharing information, NICHCY answers questions, links people with others who share common concerns, publishes information, and maintains a database of referral resources. "An advantage of NICHCY products is that they are written in a consumable, usable format," Ripley says. "One of our goals is to translate research into practice." NICHCY's resources can be downloaded directly from its web site (www.nichcy.org), which last year logged more than one million visitors. Many of the NICHCY products are available in Spanish and alternate formats. RESOURCE Division for Early Childhood "Family involvement is essential to providing effective services to infants, toddlers, and young children with special needs," says Barbara Smith, executive director of the Division for Early Childhood (DEC) of the Council for Exceptional Children. DEC is a professional membership organization concerned with early childhood special education. "Providing services to the child and his or her family in addition to family involvement cuts across DEC's position statements and resolutions." Examples include: Position on Inclusion Position on Services for Children Birth to Age Eight with Special Needs and their Families Find these publications and other useful information on the DEC web site at: www.dec-sped.org. DEC is at 1380 Lawrence Street, Suite 650, Denver, CO 80204.

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