2010 OSEP Leadership Mega Conference Collaboration to Achieve Success from Cradle to Career Strategies for Promoting Parent Leadership Mary LaCorte, ECAC Judy Swett, PACER Center Strand 2 S2-213

Why Parent Leadership: Historical and Contemporary Influences Why Parent Leadership Historical and Contemporary Influences Parent leaders have helped to shape the history and services for children with disabilities and their families. Parents as Collaborative Leaders Project

Historical Perspective: Pre IDEA 1933: Five mothers of children with mental retardation in Cuyahoga County, OH organize to protest schools’ exclusion of their children. Result: A special class in the public school 1950: 42 parents and others meet in Minneapolis on behalf of children with mental retardation. Result: Establishment of the ARC Parents as Collaborative Leaders Project

Historical Perspective: Pre IDEA 1949: Parent of a child with cerebral palsy founds the United Cerebral Palsy Association 1960s: Parents of children with mild to severe retardation sue the state of Pennsylvania to obtain a “free and appropriate education” for all students with disabilities. Parents as Collaborative Leaders Project

Litigation and Legislation Lawsuits by families of children with disabilities Advocacy work of professional organizations such as CEC, Arc, AAMR 1968 Handicapped Children’s Early Education Program 2004 IDEA Reauthorized Parents as Collaborative Leaders Project

Federal Mandate The IDEA contains provisions requiring parents to be members of IFSP/ IEP teams, to participate as educational decision-makers, and to have the right to due process. Parent Leadership begins at home Parents as Collaborative Leaders Project

ecac s s: Counseling / Psychotherapy Model Parents “adjust” and grieve 1960s s: Parent Training / Involvement Model Viewed parents as being “in need” of an opportunity to increase decision-making skills - a parent deficit model Professionals still in control of communications and resources Ann P. Turnbull, Vicki Turbiville, and H.R. Turnbull Family –Professional Partnership Models

1980s: Family Centered Model Focus on family strengths and resources Move from a “power-over” relationship to a“power-with” relationship 1990s forward: Collective empowerment Model ALL participants - professionals & families - increase their capacity and mastery over the resources needed to achieve mutually desired outcomes Family - Professional Partnership Models

Collective Empowerment ecac 2010 Context in which the families and professionals interact and collaborate – Power no longer only to control events and resources - – Power has become capacity building – Participants gain in competence, abilities, resource acquisition and capability with taking power from others – Power and capacity become a limitless resource for everyone Ann P. Turnbull, Vicki Turbiville, and H.R. Turnbull

Collective Empowerment ecac 2010 The success of this model is based on the assumption that the parent has… – Knowledge about & access to information and resources – Support and encouragement to participate And that the professional responds to changing needs of the family Ann P. Turnbull, Vicki Turbiville, and H.R. Turnbull

ecac 2010 Each of our roles brings experiences, stories and symbols – diverse and similar, positive and negative, significant and seemingly insignificant.

ecac 2010 What are the stories and symbols that have made a difference in your life? The best leaders... almost without exception and at every level, are master users of stories and symbols! ~ Tom Peters

ecac 2010 Using family experiences and stories as catalysts for change Help us connect us to our work and to each other in meaningful ways Reveal the details – the impact of systems on daily lives of families and children Powerful way to develop relationships among parents and professionals Can lead to understanding and help clarify disagreements Families can be vulnerable to criticism or misinterpretation Revealing / recalling private experiences can be painful May not be fully appreciated Stories are powerfulStories are risky Glenn Gabbard/Early Childhood Bulleting 1998 NECTAS

ecac 2010 In NC we are supporting young parents to use their experiences, stories and symbols in a variety of ways, including leadership activities funded by: NC Office of Early Learning (formerly Office of School Readiness) (“little b”) NC Division of Early Intervention (Part C) Maternal and Child Health (Public Health) NC PTI

ecac 2010 NC Office of Early Learning Family Support and Training – Parent Education workshops designed to teach parents and families how and where to tell their stories NC B-K Stipend Program – Provides stipends to parents participating in B-K instructional activities (presentations, co-teaching, mentoring, and course design) Example of Reverse mentoring NC ICC activities Parent stipends and reimbursement (state ICC meetings, council meetings. Facilitates family involvement in stakeholders meetings (reviewing policy, establishing state level goals, committees, etc) The NC Office of Early Learning also funds the statewide NC Early Intervention/Early Childhood Lending Library housed at ECAC

NC Division of Early Intervention & Parent Leadership NC funds a variety of activities designed to provide parents with knowledge and skills to: – Actively participate for their child – Actively participate in leadership roles (both large and small) at the state, local and regional level for all children

ecac 2010 NC Division of Early Intervention Parent Training opportunities designed to provide parents and families with knowledge and skills – Effective Communication Skills – Parent – Professional collaboration – Leadership – Advocacy skills – And more! Parent designed materials for parents and communities

ecac 2010 NC Division of Early Intervention Funds Parents as Collaborative Leaders Program conducted by ECAC – Training – Ongoing support – Networking opportunities – Internship assistance 2-day training All expenses including child care, hotel, meals, mileage, phone Materials and learning supports as needed Meet other parents and build relationships Step back just a little and have some fun! Parents as Collaborative Leaders: Improving Outcomes for Children with Disabilities is a collaborative research project hosted by the University of Vermont and funded through OSEP

ecac 2010 Discoveries through the PACL weekend Families needed the opportunity to share with each other They liked the informal opportunities to “expose” raw feelings – in their own time “This was the first time I have ever been a room with other people where I didn’t feel as if I had to explain my child or myself.” Many “Graduates” are involved with local, regional and state initiative such as Partners in Policymaking, ICC, Councils, etc. – and are invited to bring the parent perspective to the table with the changes in NC systems.

ecac 2010 NC Health and Human Services Division of Public Health -Women and Children’s Health Supports their commitment to meaningful parent participation by providing parent stipends to support the involvement of parents and families: – Task force – Stakeholder meetings – Advisory Team – Program planning

Parent Leadership opportunities in NC beyond early childhood Parent Advisory Boards – Local and state Activities with the NC DPI, NC DD Council, NC P & A, etc. School board and school activities Policy influence Employment And more!

ecac 2010 Action Steps  Embrace a philosophy of partnership and be willing to share power with families  Focus efforts to develop trusting and respectful relationships  Support parents and families to develop the confidence, skills and opportunity for meaningful participation at all levels Ask yourselves: – When are meetings and events held? – How are you recruiting parents? – Which parents are you recruiting? – Experience vs. expertise ASK Parents! We’ll tell ya! Anne T. Henderson, Karen L. Mapp

Additional Roles for Parent Leaders Policy makers/advisors/consultants Program evaluators Members of task forces Leaders of parent advocacy groups Grant reviewers Members of boards of trustees Group facilitators Parents as Collaborative Leaders Project

Benefits of Parent as Leaders Benefits to programs and services: Providing parent perspectives Bringing a sense of reality to ideas and tasks Improving the quality of services and supports Ensuring that programs and policies meet the needs of families Parents as Collaborative Leaders Project

Benefits to parents and professionals Enhancing skills Working from a strengths perspective Seeing others’ points of view Appreciating the expertise of the other Acting on a vision Benefits of Parent as Leaders Parents as Collaborative Leaders Project

Professional reluctance and resistance to viewing parents as partners and leaders Professional reluctance to “overburden” families Fear of the things parents might ask for Parents’ reluctance or fear of assuming new roles Administrative and organizational barriers Challenges to Parents as Leaders Parents as Collaborative Leaders Project

Parents as Leaders: What’s the Vision? Leadership is an attitude and a behavior, not a position Leadership needs to be based in reality, not on political views Leadership can be shared Leadership can be collaborative Leadership can be learned Parents as Collaborative Leaders Project

Challenge to Programs Getting parents involved early as mandated by ICC membership requirements Keep parents involved long after their involvement with Part C

Additional Challenges Funding – Training isn’t cheap if you do it statewide – Look for collaborative partners Follow-up – Action plans completed during training – Referrals – Mentoring in new positions

Solutions: Offer a variety of parent leadership trainings that allow a parent’s involvement to grow with their child – Learning how to advocate for your child – Local ICCs – State ICC – Systems Advocacy – Special Education Advisory councils – Parent Mentorship Training Programs On-line training Curriculum and Resources

Resources: PACER Center, Parent Leadership in Special Education – Parents as Collaborative Leaders Curriculum –

Comments and Questions from the audience What are you doing in your state? What challenges have you encountered? What solutions have you created?