1. W ORKING WITH C HILDREN WITH D ISABILITIES : T OOLS FOR P ARENTS AND S CHOOLS N AVIGATING THE SYSTEM : C REATING PARTNERSHIPS F OR K -12 AND POSTSECONDARY OPPORTUNITIES : “A P ARENT ’ S P ERSPECTIVE ” Sue Badeau badeaufamily@gmail.com Princeton University, May 18, 2012

2. Outline of Remarks Why a Parent-School Partnership Matters Challenges & Opportunities for Parents –Your Child with Disabilities & the School –Children with “invisible” special needs –Children in Foster Care and/or Juvenile Justice Transition to Adulthood –Exploring post-secondary opportunities for children with disabilities

3. Welcome to Holland

5. For Parents - Challenges Finding the support needed to cope with your own feelings and needs Navigating multiple systems in order to get the information you need to make wise, informed decisions Knowing how to prioritize among competing needs to get the best mix of services for your particular child

6. You Expect This

7. But you get this!

8. Challenge for Parents - Knowing we have to work through the struggle to get to progress –They ask if we are prepared for wheelchairs, but do they ask if we are prepared for the struggle to make real progress? –Challenge our children to strive for wholeness –Alysia’s story – including 8 PT visits – how to be creative within limits – Dance made a difference – working with the school to get dance in the IEP and the high school of our choice

9. Its All About Climbing the Mountain ~ not getting to the top - Who sets the goals? - Who sets the pace? - How do you know when you arrived? - There is always another mountain to climb -How do you decide if you - and your child - are successful? Story of Wayne being placed in a classroom primarily for hearing impaired children Story of George “may learn to write his name, but not to graduate from high school” Their Mountaintops

10. For Parents - Opportunities Believe in your own expertise Become your child’s primary advocate Learn when to fight and when to collaborate Become not only part of the team, but the leader of the team (example of 7 case managers) ADAM story – school, pediatrician, hospital

11. For Parents - Opportunities~ Create a Toolkit for Success

12. Become Familiar with your child’s School Get to know the principal and other key staff Participate in the “Home/School Association” Get to know how your school district operates in terms of budget Issues, special education rights of parents, chain of command Talk with other parents to learn of typical assignments in various grades

13. Do Your Homework Observe your child well, record what you see Investigate your options Know your rights as a parent and your child’s rights Keep good notes, document everything – create a “care notebook” (see Medical Home site for samples and resources)

14. Develop a Partnership Build a relationship Conduct yourself in a professional manner Be accessible, keep appointments When you need to go up the ladder - go up one rung at a time

15. Become Part of a Larger Group For support For information For advocacy

16. Advocate for Special Services Request Evaluation Participate at every stage Ask “WHY” (a lot!) Keep abreast of changes in the law and in local resources Normalize your child’s life as much as possible Maintain your own sanity

17. Challenges For Children in Foster Care or Juvenile Justice Educational needs often missed completely or misdiagnosed (David’s deafness) Or diagnosed but treatment plan/ IEP not implemented Records lost (Janae carrying records in backpack) And then – starting over again, and again when placements change Confusion about who can speak for them –Role of parent, foster parent, caseworker, placement staff (residential)

18. Transition to Adulthood Equipping child to become their own self-advocate Moving from “family-centered” to “person-centered” model - http://www.ilr.cornell.edu/edi/pcp/ Learning and engaging new systems – i.e. Vocational Rehabilitation & Adult Basic Education Don’t allow “inclusion” practices to work against you at this stage Examples: Trish & Alysia

19. Help Your Child to Speak for Him/Herself at School: Telling “My Own” Story Help your child have the language s/he needs to feel understood Help your child to become a self-advocate –http://www.fvkasa.org/http://www.fvkasa.org/ Help your child practice his/her story Teach pro-active problem-solving strategies –Practice responses to difficult situations

20. For Educators: Essential Components of Family Engagement Honesty & Clarity Respectful and mutual relationships Identify everyone’s strengths & roles Shared responsibility for success

21. Traditional Approaches “The professionals” (Educators, clinicians) are the experts The job of the professional is to know about various problems, have assessment procedures and techniques for intervention The job of the family is to comply The family is primarily identified by its problems, losses or issues The family is one-dimensional and their strengths or talents are not relevant.

22. Engagement >> Involvement >> Partnership – A new paradigm Why is it so hard? Establish trust Communication is frequent and not solely crisis or problem-centered Identify a continuum of possibilities and opportunities for engagement & partnership

23. In Conclusion For parents of children with special needs, as well as for the youth themselves there are many challenges and many opportunities Opportunities often translate to success when meaningful partnerships between parents, schools and providers are established and sustained Some particular situations – including foster care, juvenile justice and transitioning into adulthood for all persons with disabilties – require additional supports and advocacy

24. Resources for Families Family-to-family health information centers and Parent Training & Information Centers www.pacer.org www.pacer.org Grass-roots family organizations ala Family Voices www.familyvoices.orgwww.familyvoices.org Family-centered care - Medical home initiative - http://www.medicalhomeinfo.org/ http://www.medicalhomeinfo.org/

25. Resources & Promising Practices For Foster Care & JJ youth Training & supporting foster parents to become the child’s advocate in schools and communities (PEATC) http://www.peatc.org/ http://www.peatc.org/ Involving bio family in appts & decisions Equip judges to ask key questions via benchguides -Casey (education) Clearinghouse for best practice http://www.cachildwelfareclearinghouse.org/ http://www.cachildwelfareclearinghouse.org/

26. Resources for Transition to Adulthood Health & Ready to Work Initiative http://www.hrtw.org/http://www.hrtw.org/ Kids as Self Advocates http://www.fvkasa.org/http://www.fvkasa.org/ Jim Casey Youth Opportunities Initiative http://www.jimcaseyyouth.org/ http://www.jimcaseyyouth.org/ Foster Club http://www.fyi3.com/http://www.fyi3.com/ Berkshire Hills Music Academy http://berkshirehills.org/http://berkshirehills.org/ Threshold Program http://www.lesley.edu/threshold/threshold_home.htm http://www.lesley.edu/threshold/threshold_home.htm Vermont Work Incentive Initiative http://www.uiowa.edu/~lhpdc/work/States/Vt/Vermont_O verview_Presentation_Development.ppt http://www.uiowa.edu/~lhpdc/work/States/Vt/Vermont_O verview_Presentation_Development.ppt