1. NYDBC/NYPN Parent Leadership Training

2. How We’ll Spend our Time Together Get to know one another Review what research has to say about family leadership Explore together the meaning of family leadership and how it applies to each of you Cover the basic training design we’ll use to support you to become family leaders Discover different things about each of you that will help in designing your training Plan our next steps NYDBC/NYPN Parent Leadership Training * adapted by NYDBC from National Consortium on Deaf-Blindness Family Leadership Training Program

3. Targeted Outcomes What will we learn this weekend… 1.The impact of deaf-blindness on my child's overall development (e.g., social, emotional, cognitive, motor) and learning (F01b) 2.The communication concepts and the array of language and communication skills for children who are deaf-blind (F06a) 3.Aspects of Leadership development and how it relates to me (F02m) 4.The impacts of having a child with deaf-blindness in family ( F08f) 5.Techniques that reduce stress, guilt, and isolation (F08i) 6.Using my individual and family strengths to address family needs (F08h) * adapted by NYDBC from National Consortium on Deaf-Blindness Family Leadership Training Program NYDBC/NYPN Parent Leadership Training

4. What does Leadership mean to you? (A think-pair-share activity)  Think of someone who you consider to be a leader.  Why do you feel this way?  What qualities or characteristics do they demonstrate?  Share your thoughts with another person  Let’s talk about it! * adapted by NYDBC from National Consortium on Deaf-Blindness Family Leadership Training Program NYDBC/NYPN Parent Leadership Training

5. Common Leadership Qualities  Vision  Wants to learn  Listens  Delegates  Gives credit where credit is due  Sense of humor  Sets goals for themselves  Is organized  Integrity = inner values + outward actions  Earns trust  Motivates  Is non-judgmental and fair  Is humble  Respectful  Can adapt to change – not rigid  Communicates with others * adapted by NYDBC from National Consortium on Deaf-Blindness Family Leadership Training Program NYDBC/NYPN Parent Leadership Training

6. Personal Reflection What leadership qualities do you see in yourself? * adapted by NYDBC from National Consortium on Deaf-Blindness Family Leadership Training Program NYDBC/NYPN Parent Leadership Training

7. What is Family Leadership? Meaningful family leadership occurs when family members gain the knowledge and skills to… …function in meaningful leadership roles and represent a “family voice” to help shape the direction of families, programs and communities. Family leadership is successfully achieved when family members and professionals build effective partnerships and share responsibility, expertise and leadership in decisions being made that affect families and communities. The family members involved in these collaborations are called… …Family Leaders * adapted by NYDBC from National Consortium on Deaf-Blindness Family Leadership Training Program NYDBC/NYPN Parent Leadership Training

8. Who is a Family Leader?  A Family Leader…  May be a parent, grandparent, foster parent, sibling or anyone else deeply involved in a child’s life  Has personal experience in using resources/services to strengthen his or her family  Is speaking and acting from his or her perspective as a family member  Is not speaking and acting solely in a staff role for an organization or institution. * adapted by NYDBC from National Consortium on Deaf-Blindness Family Leadership Training Program NYDBC/NYPN Parent Leadership Training

9. Potential Roles for a Family Leader  Role model  Trainer  Contributor to written and A/V materials  Initiator/participant in policy or system change  Grant reviewer  Advocate for individuals, families and/or programs  Participant in focus groups  Advisory board member  Member of boards of directors  Task force member  Member of planning commission  Witness at public hearings  Public speaker  Media interviewee  Fundraiser  Spokesperson * adapted by NYDBC from National Consortium on Deaf-Blindness Family Leadership Training Program NYDBC/NYPN Parent Leadership Training

10. Some Real Life Examples 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. 1960s and 70s: ARC members, professionals, and other parents continue to lobby hard for federal legislation for children with disabilities. Result: The Education for All Handicapped Children Act, now known as the IDEA. 1965: First pre-school for children with CRS was opened at the DDC at St. Luke’s Hospital in NYC at request of the parents. 1985: Parents in the advisory board of HKNC with the professional support from HKNC and Hilton-Perkins Program created a “Dream Team” out of which NFADB was born. 2009: Parents from the DBMAT (TX) were instrumental in the passing of the House Bill 37 (which makes children eligible for the Deaf-blind Medicaid Waiver, until now for adults only) and the House Bill 63 which creates a career ladder for Interveners (once the bill is implemented the interveners in the Deaf-Blind Medicaid Waiver will have a real career with a decent salary). Some material from Hasazi & Shepard, Parents as Collaborative Leaders * adapted by NYDBC from National Consortium on Deaf-Blindness Family Leadership Training Program NYDBC/NYPN Parent Leadership Training

11. Parent Leadership ~ Benefits to Parents  Research shows that all parents have the potential to become strong parent leaders.  Enhancing your knowledge and skills  Learn how to see others’ points of view  Learn to appreciating the expertise of others  Chance to act on a vision or passion * adapted by NYDBC from National Consortium on Deaf-Blindness Family Leadership Training Program NYDBC/NYPN Parent Leadership Training

12. Parent Leadership ~ Benefits to Systems  When parents gain the knowledge and skills to function in leadership roles they can:  Bring 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  Often children of family Leaders begin to take on leadership roles appropriate for their age group.  Systems will achieve more positive results, utilize resources more effectively and expand their ability to create change when they partner with Family Leaders to plan, implement, oversee and evaluate their services. * adapted by NYDBC from National Consortium on Deaf-Blindness Family Leadership Training Program NYDBC/NYPN Parent Leadership Training

13. Federal & State Recognition of the Power of Family Leaders – a few examples…  IDEA – strengthening of language involving parent partnership with each revision  Federal Grants – emphasis on Family Leadership initiatives (PTIC, Parent to Parent)  Governing Boards – most require parent representation (Statewide Early Intervention Coordinating Council - EICC)  Advisory Committees - most require parent representation (SEPTA, NYS Developmental Disabilities Planning Council) * adapted by NYDBC from National Consortium on Deaf-Blindness Family Leadership Training Program NYDBC/NYPN Parent Leadership Training

14. Effective Supports for Family Leaders  A defined meaningful role as a family 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 family leader role  Opportunities to work in partnership with staff and professionals in organizations that address key issues related to the family leader’s area of interest and commitment. (National Parent Leadership Tool Kit) * adapted by NYDBC from National Consortium on Deaf-Blindness Family Leadership Training Program NYDBC/NYPN Parent Leadership Training

15. NYDBC/NYPN Parent Leadership Training goal As graduates of the NCDB Family Leadership Training Program, family members will be able to use knowledge and skills they develop to impact services and supports for children with deaf-blindness and their families. This can be within their own community, at the regional or statewide level, or even at the national level. * adapted by NYDBC from National Consortium on Deaf-Blindness Family Leadership Training Program NYDBC/NYPN Parent Leadership Training

16. Coming up this weekend ….  You will learn new ways of taking care of yourself  You will create a Family Map  You will identify your learning style  Overview about Deaf-Blindness (causes and challenges)  We’ll learn how to network together  PATH Experience  Create an Action Plan NYDBC/NYPN Parent Leadership Training

17. Second training session ….  Helping yourself to a better life  Understanding systems and family leadership opportunities  Educational systems  State agency systems (Health, DD, etc.)  Legislative systems  Medical  Community systems  Guidelines on Advocacy  Charting your progress towards becoming the leader you want to be  The Buddy System  Explaining research on Legislation NYDBC/NYPN Parent Leadership Training

18. Third training session ….  Negotiating conflict – Your conflict styles activities  Active Listening & Communication  Revisiting your personal, family, and child goals  Matching Passions & Talents to Leadership Opportunities  Strategies for managing life  Leadership goal development  Your Leadership Action Plan NYDBC/NYPN Parent Leadership Training

19. Home Work Ongoing Support Conference Calls * adapted by NYDBC from National Consortium on Deaf-Blindness Family Leadership Training Program NYDBC/NYPN Parent Leadership Training

20. Thanks to…  Texas Deaf-Blind Project  National Consortium on Deaf-Blindness  Parents as Collaborative Leaders: Improving Outcomes for Children with Disabilities, Susan Hazasi and Katherine Shepard  National Parent Leadership Tool Kit, Parents Anonymous® * adapted by NYDBC from National Consortium on Deaf-Blindness Family Leadership Training Program NYDBC/NYPN Parent Leadership Training