Eau Claire County

• Started a parent support group
• Located information on alternative therapies to share with other families
• Testified at Joint Finance Committee hearing on funding for programs supporting people with disabilities in their communities

Outagamie County

• Organized a regional workshop on oral motor therapy with a nationally-known therapist that attracted 140 participants
• Developed a scholarship program to allow families and providers to attend workshop and support private evaluation for families who attended the workshop

Marinette County

• Coordinates WI Cornelia DeLange Syndrome support group
• Serves as Children with Special Health Care Needs county parent liaison for her county
• Coordinates an adoptive parents support group to share strategies and resources

Outagamie County

• Working with local parks committees to install accessible playground equipment
• Researching ways to obtain extended school year services for preschool children in their school district

Outagamie County

• Organized written resources from PALs to share with Birth to 3 Program, providers and other parents

Washington County

• Joined county mothers support/information group
• Joined DAWN network and talked to gubernatorial candidates about her son
• Specializes within her office in special need/special education issues in her role as a juvenile public defender

2001-2003 PALs Report

PALs parents made changes in participation, ability, skills and knowledge to become better advocates for the needs of their children and communities.

"I feel like I am not alone anymore with the problems we face. There is help out there."

"I am no longer afraid to ask or question a teacher or a doctor when I'm unclear on something about my child. I now have a better style that doesn't come across so confrontational."

The majority of participants reported active participation in:

• Their child's educational planning at school or with a community agency through IEP/IFSP meeting and contact with teachers, therapists, and school administrators. (83%)
• Regular conversations with health care professionals about the care of their child. (100%)
• Telling their family stories at legislative events, public hearings and parent groups, which was a new experience for many. (58%)

Parents credit PALs with influencing their participation in activities to advocate for their child and family:

• 69% reported a change in their participation as a member of their child's IFSP or IEP team.
• 84% reported an influence on their communications with teachers, therapists and school administrators.
• 53% commented on an influence in their participation in disability or advocacy related parent support groups.
• 62% experienced change in their communications with doctors and other health care professionals.

The majority of PALs parent activities were at the local level (68%), with some participation in state informational and advocacy activities. For many families, this was their first experience with participation at the state level (i.e. testifying at public hearings and letter writing campaigns).

Additional changes in the parents' abilities were also reported:

• 80% reported major/extreme change in awareness of services available to address their cihld's needs
• 80% reported major/extreme change in ability to assist other sin obtaining the services and supports that they need for a member of their family with disabilities

Specifically, families commented that they:

• Referred other families to PALs.
• Experienced major change in their ability to find services for their children.
• Told other parents about their experiences and information gathered.
• Planned to help other families in the future.

PALs training also was influential in supporting parents in developing their skills to become effective advocates.

• 82% considered PALs to have been a great or extreme influence on their advocacy skills.
• 82% also reported that their PALs experiences were of great or extreme value to them as a parent of a child with special needs.

PALs parents reported major and extreme changes in their knowledge as a result of their participation in the training activities and networking with other families.

This increased knowledge supported families in:

• Changing their role in their child's educational planning. (81%)
• Understanding their legal rights. (88%)
• Considering ways to plan for their child's future. (94%)
• Helping family and friends understand their family. (75%)
• Locating and applying for services. (81%)
• Negotiating to get their family and child's needs met. (75%)
• Coordinating different services (69%)

In addition to providing information on changes made as a result of participation in PALs, these families provided valuable information on the challenges they face in advocating for change in their communities.

Their challenges include:

• Finding information.
• Managing time.
• Finding energy for consuming tasks.
• Dealing with financial stressors.
• Organizing information.
• Responding to lack of understanding from family and friends of the stressors on their families.
• Educating family, friends and providers on their child's strengths as well as challenges.

Even in the face of these challenges, many PALs parents provided examples of specific changes they had made as a direct result of their PALs experiences:

Personal:

• Increased ability to ask questions, have confidence, be assertive, staty motivated
• Increased networking with other parents
• Improved parenting skills
• Decreased feelings of isolation

Family:

• Increased focus on inclusion, involving child in community activities
• Improved communication with extended family
• Shared vision as a couple for planning the future

School/Community

• Improved understanding of the system (e.g. IEP process)
• Increased access to services and resources
• Better relationships with providers
• Shared information about successful services and supports
• Increased participation in: volunteer work, public speaking, involvement with community groups
• Better communications with doctors and otehr health care professionals
• Increased access to services and resources

"PALs has given me knowledge, and it also has given me an emotional life. Having the support of the PALs staff and PALs families is priceless."

"PALs has taught us that we need to be more involved both locally and at state and federal levels. It has also prepared us to be more effective in our advocating."

PARENTS AS LEADERS (PALs) is a part of the Wisconsin Personnel Development Project at the Waisman Center, University of Wisconsin-Madison. It is funded by the Wisconsin Department of Health and Family Services, Birth to 3 Program.

WPDP Director: Linda Tuchman
PALs Facilitators: Beth Swedeen, Molly Murphy
Program Support: Lynn Sankey
Media Specialist: Cheri Sanders

1-800-532-3321