Nothing About Us… Without Us

1. Nothing About Us… Without Us 2006 Care Coordinators Conference Parent to Parent of Virginia

2. Nothing About Us Without Us • Healthy People 2010 Goal Families of children with special health care needs will partner in decision-making at all levels • The challenge is for full family involvement in systems of care to become the rule rather than the exception

3. Nothing About Us Without Us • Most parent leaders think of themselves as typical moms and dads • Many would say they had no intention of becoming leaders at all • They simply saw a need and responded to it

4. Nothing About Us Without Us • Family involvement is about enhancing connections within families, between families, their communities, and the systems that serve them in an effort to increase positive outcomes for children with special health care needs.

5. Nothing About Us Without Us • As parents, we can be looked at as the ones with the most needs. Sometimes we can be the star of the show – other times, the show stopper. Parent

6. Nothing About Us Without Us • 3 Levels of Family Involvement • Personal Level • Supporting Others Level • Systems Change Level

7. Nothing About Us Without Us • “What about family involvement are you afraid of?” • I’m afraid my child will be punished if I make too much trouble. • I’m afraid my child’s providers will be angry with me for speaking out and reject us. • I’m afraid my voice won’t make a difference. • I’m afraid of being blamed for my child’s problems. • I’m angry about being exploited – they use my story to raise money and then we never hear from them after they get the money.

8. Nothing About Us Without Us • Is your organization open to parents? 1. What is your organization’s attitude towards parents? • If children don’t do well, it is because their families don’t give them enough support. • Parent involvement is only welcome when asked. • Staff make contact frequently with parents – the door is always open. • Our agency has high expectations for all children and families and it partners with families to make sure every child succeeds.

9. Nothing About Us Without Us • Is your organization open to parents? 2. Does your organization give families information? • Parents don’t need to know much and probably won’t understand it anyway. • Parents get information when first connected with our organization. • Staff regularly send parents information. • Staff regularly send parents information and parents actively participate in reviewing their child’s files and service plans.

10. Nothing About Us Without Us • Is your organization open to parents? 3. Does your organization actively involve parents on committees? • Only one parent was handpicked by the director to help out. • The active parents are mostly middle class. • Several parents participate on committees. • Several parents are on the committees and actively decide how they want to be involved – they write parent friendly documents and reach out to other parents to make sure all take part in some way.

11. Nothing About Us Without Us • How did your organization score? a = 1 point, b = 2 points, c = 3 points d = 4 points • A total score of 1 – 3 fortress organization • A total score of 4 – 6 come if we call organization • A total score of 7 – 9 open door organization • A total score of 10 – 12 partnership organization

12. Nothing About Us Without Us • Is there staff-parent trust? • No trust (staff feel they get little or no respect – there is conflict between staff and parents) • Minimal trust (staff feel some respect to and from parents - they agree that talking with parents helps their efforts) • Strong trust (staff report a lot of respect between parents and staff – they feel parents support their work) • Very strong trust (almost all staff feel great respect from and for parents –they see parents as partners)

13. Nothing About Us Without Us • To build family involvement, systems must: • Join the family • Engage in dialogue with families • Commit resources • Train parents for leadership • Facilitate connection and collaboration across the child’s various service systems

14. Nothing About Us Without Us • When writing policies and procedures, write us in. • What is the policy/procedure? • How and where can youth and family involvement be written into the policy/procedure? Be careful – by not writing us in, you may write us off! Federation of Families

15. Nothing About Us Without Us • Recruiting Families • Contact parents that receive your services, reach out to local parent support groups, find parents through other agency boards • Meet with parents to explain your purpose, share the expectations, ask what parents need in order to participate • Recruit more than one parent – it is a heavy burden for one parent to represent all parents in the community

16. Nothing About Us Without Us • Training/Supporting Families • Train parents on how to reframe personal experiences, train others on how to work collaboratively with parents • Support parents by being creative in finding meeting times, consider stipends • Show appreciation for/validate the input from parents

17. Nothing About Us Without Us • Sustaining Family Involvement • Reduce confusion by having valid information and consistent communication • Set up a system for veteran parents to mentor new parents • Hold meetings in a manner that is respectful, safe and supportive

18. Nothing About Us Without Us • For the sake of our children, we must strive to be patient for those whose experiences have not given them access to our perspective. It is our duty to lead these people to fuller understanding of the beauty and ability within our children. Parent

19. Nothing About Us Without Us • When parents are fully engaged, from working with their child at home and being involved in the system, to becoming advocates for strong services in their community, everyone reaps the benefits

20. Nothing About Us Without Us • Families must be valued as visionaries, missionaries, and pioneers • Families must question the status quo • Families from diverse communities must be involved to ensure that all invested populations are represented • Families must build interdependent relationships with multiple stakeholders that also seek to enhance the quality of life for children with special health care needs

21. Nothing About Us Without Us • Benefits for Children • Better attendance at school • More positive attitudes/behavior • Higher achievement in school • More opportunities to be included in their community

22. Nothing About Us Without Us • Benefits for Parents • More confidence in the agencies that support them • Greater confidence in themselves • Social networks that they can use to create opportunities for their children • Management skills they can transfer to home issues • Knowledge of how to influence decisions made in their schools, communities and state

23. Nothing About Us Without Us • Benefits for the System • Personnel have higher morale • Providers/organizations have better reputations • Policies are developed that respond directly to parent’s needs • Communities grow stronger

24. Nothing About Us Without Us • There is power in collaboration 1 parent = a fruitcake 2 parents = a fruitcake and a friend 3 parents = troublemakers 5 parents = lets have a meeting 10 parents = we’d better listen 25 parents = our dear friends 50 parents = a powerful organization The Case for Parent Leadership

25. Nothing About Us Without Us • Efficacy = the power to have an effect

26. Thank you! Parents all across the Commonwealth are counting on you