The Power of Parents: A Model for Parent Leadership Texas Deafblind Family Leadership Series Presented by Edgenie Bellah, Deafblind Family Specialist Texas School for the Blind & Visually Impaired Outreach Addressing the Needs of Students Labeled Deaf and Low Functioning, At Risk or Deafblind Conference   Houston, Texas – March 30, 2007

How We’ll Spend our Time Together Review what literature has to say about parent leadership Cover the basic training design TSBVI is using to support family members in being leaders in their community. Discuss our approach for supporting family leaders in discovering their personal passions and talents how to match them to leadership opportunities that are ideally suited to their own effective leadership style Share lessons learned

In Case You Need Learning Objectives During this presentation, you will: Understand the research findings supporting parent leadership. Learn the practice based research design of the Texas Deafblind Family Leadership Series. Learn about Project SPARKLE, a training program specifically developed for parents of children who are deafblind. Understand how to support family leaders in discovering their personal passions and talents and match them to leadership opportunities that are ideally suited to their own effective leadership style. Learn the practice based research findings of the Texas Deafblind Family Leadership Series.

What Is Parent Leadership Meaningful Parent Leadership occurs when parents gain the knowledge and skills to function in meaningful leadership roles and represent a “parent voice” to help shape the direction of their families, programs and communities. Parent Leadership is successfully achieved when parents and professionals build effective partnerships and share responsibility, expertise and leadership in decisions being made that affect families and communities. The parents involved in these collaborations are called Parent Leaders. Throughout the country, parents and professionals are working together in new ways. They are participating jointly in local, regional and national planning processes, collaborating as grant reviewers and program evaluators, and serving on advisory boards and coalitions. Working together, the voices of parents and professionals are shaping policy and practice to make a difference in the lives of children and families. Quoted from National Parent Leadership Tool Kit (packet)

Who is a Parent Leader A Parent Leader… May be a parent, grandparent, kinship care provider, foster parent, or anyone else in a parenting role Has personal experience in using resources/services to strengthen his or her family Is speaking and acting from his or her perspective as a parent Is not speaking and acting in a staff role for an organization or institution. Quoted from National Parent Leadership Tool Kit (packet)

Effective Supports Parent Leaders can be most effective when the following supports provide a strong foundation for their work: A defined meaningful role as a Parent Leader Access to training Clear opportunities to contribute to program development, implementation, oversight and evaluation, policymaking, training and technical assistance, public awareness and outreach Tangible supports such as assistance with child care and transportation and compensation for wages lost from work while contributing in a Parent Leader role Opportunities to work in partnership with staff and professionals in organizations that address key issues related to the Parent Leader’s area of interest and commitment. Quoted from National Parent Leadership Tool Kit (packet)

Ways to Demonstrate Parent Leadership Role Model for Other Parents Co-Trainer Contributor to Written and Audiovisual Materials Participant at Conferences and Working Meetings Grant Reviewer Participant in Quality Improvement and Evaluation Activities Participant in Needs/Strengths Assessment Processes Advocate for Individuals, Families and/or Programs Quoted from National Parent Leadership Tool Kit (packet) Participant in Focus Groups Advisory Board Member Member of Hiring Committees Member of Boards of Directors Peer Review Team Member Task Force Member Member of Planning Commission Witness at Public Hearings Public Speaker Media Interviewee Fund Raiser Spokesperson

Parent Leadership Justification Research on Parent Leadership shows that all parents have the potential to become strong Parent Leaders. Meaningful Parent Leadership occurs when parents gain the knowledge and skills to function in leadership roles and represent a “parent voice” to help shape the direction of their families, programs and communities. Often children of Parent Leaders begin to take on leadership roles appropriate for their age group, based on their parents modeling and ability to provide increased guidance about these new behaviors. Health, education, social service and other systems that affect children and families will achieve more positive results, utilize resources more effectively and expand their ability to create change when they partner with Parent Leaders to plan, implement oversee and evaluate their services. Quoted from National Parent Leadership Tool Kit (packet) Research to Practice Findings The Case for Parent Leadership National Parent Leadership Month Tool Kit The Parent Leadership Program Training Manual NICHCY: A Parent’s Guide to Serving on Boards and Committees Texas Deafblind Project: Family Leadership Series Training Manual

Federal & State Recognition IDEA – strengthening of language involving parent partnership with each revision Federal Grants – emphasis on Parent Leadership initiatives Governing Boards – most require parent representation Texas Schools – move towards Parent Liaison positions

The Benefits of Parent Stories “Influence the Head by Encouraging the Heart” – national focus on promoting evidence-based effective practices has given new importance to parents sharing their stories. Story telling has long been used by effective parent leaders as a powerful advocacy tool for helping decision makers understand their issues. “The plural of anecdote is policy” – quote at OSEP Meeting, July 31, 2006 to summarize research and data supporting the power of parent stories in leading to policy/systems change. Refer to Telling Your Story Handout

A Model for Parent Leadership Texas Deafblind Family Leadership Series

Learning from Experience: The Evolution of Texas Deafblind Project Parent Leadership Models Project Parent Support DBMAT Regional Coordinators Texas Deafblind Family Leadership Series A.   Project Parent Support ·  Parents were paid by the project to provide support to other families across the state. ·  Training was heaviest in counseling, active listening ·  After initial startup, there was a decrease in the parents’ willingness and availability to be Pilot Parents (several did take on paid employment). At the same time, the general parent support programs were getting started elsewhere (e.g., Partners Resource Network, Parent to Parent)   B.   DBMAT Regional Coordinators ·   Started in the last grant cycle ·   Hope was to train leaders in the family organization so that they could provide technical assistance to families across the state. ·   DBMAT RCs received ongoing training and had some ties to the Project C. Deafblind Family Leadership Series – started in this grant cycle

Texas Deafblind Family Leadership Series Goal: As graduates of the Texas Deafblind Family Leadership Series, family members will be able to use skills and tools they develop in the training to impact services and supports for children with deafblindness. This can either be within their own community, at the regional or statewide level or even at the national level.

Objectives By participating in this yearlong training, Family Leaders will: Broaden their understanding of deafblind issues beyond what they already know about their own child. Understand the various leadership opportunities within the deafblind community and other systems. Discover their personal passions and talents and match them to leadership opportunities that are ideally suited to their own effective leadership style. Refine the art of storytelling as a powerful family leadership tool to “encourage the hearts” of decision makers and affect change. Learn how to team with other leaders to accomplish mutual goals. Help the Project meet the diversity needs of the Texas population (geographically and culturally).  

Timeline Year 1 – Series Development Year 2 – First Class Year 3 – Second Class Year 4 – Third Class Year 5 – Evaluation of Project Next Grant Cycle – Continuing Education Component

Recruitment Family members nominated from across the state by educators, state department for the blind, and other community partners Participants have to be a family member of a school-aged child who is deafblind. Special recruitment activities have been undertaken to draw fathers, siblings, and other family members into the training. Selection based on individual’s leadership contribution/potential and class diversity (e.g., geographical, cultural, family member representation)

Commitments Participants commit to one year of training Graduates receive PhE Graduates commit to mentor new class members Graduates commit to continuing education as part of Texas Deafblind Leadership Community

Project Support Peer Support Facilitator Support Buddy System Class Camaraderie Graduate Mentoring Texas Deafblind Family Leadership Community Facilitator Support Individual Progress Reviews Support with Personal Discovery Process Ongoing Coaching Ongoing TA and Connection

Individual Progress Reviews Individual meetings scheduled at each training to work through/chart progress on Parent Leader’s growth using: Self-Discovery Tools Follow-up Projects Additional information

Distance Education Project SPARKLE Partners In Policymaking Web- based Course

Weekend Trainings Deafblindness 102 Leadership with Different Systems Being Effective Mentors & Growing as Leaders

Follow-up Projects Expanding Your Knowledge of Deafblind Issues Beyond What You Know About Your Own Child Sharing Your Story As A Powerful Parent Leadership Tool Being An Effective Leader Being An Effective Leader

Other Strands Taking Care of Ourselves Turning Life Experiences into Credentials portfolio Started out Taking Care of Yourself but in the spirit of “Me to We”, changed to reflect group support. If group is small enough, show portfolio

Personal Discovery Process Discovering My Leadership Passions & Talents form Charting My Progress Towards Becoming the Leader I Want to Be form Matching Passions & Talents to Leadership Opportunities form

Discovering Passions & Talents  “Passions are the areas of deafblindness and leadership that interest you — in other words, things that give you energy or excite you. Your passions will serve as the energizer you will need to keep on task during difficult stages. Passions are also powerful motivators for others—they can entice others to join forces with you, or they can sell others on a concept you're promoting.” “Talents are the activities and skills that come to you naturally or that you’ve worked hard to develop. Knowing your talents will give you an edge in accomplishing your goal. It will also help you choose leadership opportunities that match your talents...a sure formula for successful outcomes.”

Pathways to Parent Leadership

Matching Passions & Talents with Leadership Opportunities Community Legislative Education Medical State Agency  

Project’s Evaluation Design Pre & Post Test Comparison Self Discovery Progress Follow-up Projects Completion Partner Feedback

Resources and Partners (to name a few) Project SPARKLE Texas Parent to Parent Texas Governor’s Office on People with Disabilities The Arc of Texas Partners in Policymaking Wrightslaw Communities of Practice with NTAC, Washington, Pennsylvania, and California Deafblind Projects to implement similar leadership models in other states

Who Are These Leaders? 27 Total: 21 mothers, 2 foster mothers, and 4 fathers 13 of 20 Education Service Center regions represented 3 leaders with disabilities 5 African Americans, 3 Hispanics and 1 American Indian A wide range of economic diversity

Leaders’ Accomplishments Legislative Work Participation in numerous local/regional level advisory boards and workgroups Two appointments to TSBVI Board of Directors Several articles written in See/Hear, local newspapers and national magazines Interviews on TV and radio NFABD regional representative application DBMAT regional coordinators, officers and conference planning Numerous presentations and trainings Statewide Conference for families who have children with CHARGE Syndrome – 170 in attendance Formation of Texas CHARGERS, non-profit organization And a few personal accomplishments that knocked our socks off!

Outcomes & Lessons Learned Tremendous growth in individuals’ leadership skills and confidence Learning gone way beyond initial curriculum development Cohesive and supportive community of leaders – synergy! Continuing Education Mentoring of other states in developing leadership programs Model for national program Expansion in Texas to Spanish speaking families with children who are visually impaired Exploring expansion of model for siblings who are teens/young adults

Questions & Discussion Time

Review of Learning Objectives Understand the research findings supporting parent leadership. Learn the practice based research design of the Texas Deafblind Family Leadership Series. Learn about Project SPARKLE, a training program specifically developed for parents of children who are deafblind. Understand how to support family leaders in discovering their personal passions and talents and match them to leadership opportunities that are ideally suited to their own effective leadership style. Learn the practice based research findings of the Texas Deafblind Family Leadership Series.

Review of Learning Objectives (continued) Understand the research findings supporting parent leadership. Learn the practice based research design of the Texas Deafblind Family Leadership Series. Learn about Project SPARKLE, a training program specifically developed for parents of children who are deafblind. Understand how to support family leaders in discovering their personal passions and talents and match them to leadership opportunities that are ideally suited to their own effective leadership style. Learn the practice based research findings of the Texas Deafblind Family Leadership Series.

Review of Learning Objectives (continued) Understand the research findings supporting parent leadership. Learn the practice based research design of the Texas Deafblind Family Leadership Series. Learn about Project SPARKLE, a training program specifically developed for parents of children who are deafblind. Understand how to support family leaders in discovering their personal passions and talents and match them to leadership opportunities that are ideally suited to their own effective leadership style. Learn the practice based research findings of the Texas Deafblind Family Leadership Series.

Review of Learning Objectives (continued) Understand the research findings supporting parent leadership. Learn the practice based research design of the Texas Deafblind Family Leadership Series. Learn about Project SPARKLE, a training program specifically developed for parents of children who are deafblind. Understand how to support family leaders in discovering their personal passions and talents and match them to leadership opportunities that are ideally suited to their own effective leadership style. Learn the practice based research findings of the Texas Deafblind Family Leadership Series.

Review of Learning Objectives (continued) Understand the research findings supporting parent leadership. Learn the practice based research design of the Texas Deafblind Family Leadership Series. Learn about Project SPARKLE, a training program specifically developed for parents of children who are deafblind. Understand how to support family leaders in discovering their personal passions and talents and match them to leadership opportunities that are ideally suited to their own effective leadership style. Learn the practice based research findings of the Texas Deafblind Family Leadership Series.

Review of Learning Objectives (continued) Understand the research findings supporting parent leadership. Learn the practice based research design of the Texas Deafblind Family Leadership Series. Learn about Project SPARKLE, a training program specifically developed for parents of children who are deafblind. Understand how to support family leaders in discovering their personal passions and talents and match them to leadership opportunities that are ideally suited to their own effective leadership style. Learn the practice based research findings of the Texas Deafblind Family Leadership Series.