Urban Institute Remarks

							   WORKING WITH CHILDREN WITH DISABILITIES:
      TOOLS FOR PARENTS AND SCHOOLS




NAVIGATING THE SYSTEM: CREATING
   PARTNERSHIPS FOR K-12 AND
 POSTSECONDARY OPPORTUNITIES:
   “A PARENT’S PERSPECTIVE”

           Sue Badeau
     badeaufamily@gmail.com
       Princeton University , May 18, 2012
               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
Welcome to Holland
  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
You Expect This
But you get this!
    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
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
    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
For Parents - Opportunities~
Create a Toolkit for Success
 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
     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)
           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
    Become Part of a Larger
           Group
• For support
• For information
• For advocacy
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
   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)
        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
      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/
• Help your child practice his/her story
• Teach pro-active problem-solving strategies
   – Practice responses to difficult situations
     For Educators: Essential Components of
              Family Engagement

•   Honesty & Clarity
•   Respectful and mutual relationships
•   Identify everyone’s strengths & roles
•   Shared responsibility for success
        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.
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
              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
      Resources for Families
• Family-to-family health information centers
  and Parent Training & Information Centers
  www.pacer.org
• Grass-roots family organizations ala
  Family Voices www.familyvoices.org
• Family-centered care - Medical home
  initiative -
  http://www.medicalhomeinfo.org/
 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/

• Involving bio family in appts & decisions

• Equip judges to ask key questions via
  benchguides -Casey (education)

• Clearinghouse for best practice
  http://www.cachildwelfareclearinghouse.org/
    Resources for Transition to
           Adulthood
• Health & Ready to Work Initiative http://www.hrtw.org/
• Kids as Self Advocates http://www.fvkasa.org/
• Jim Casey Youth Opportunities Initiative
  http://www.jimcaseyyouth.org/
• Foster Club http://www.fyi3.com/
• Berkshire Hills Music Academy http://berkshirehills.org/
• Threshold Program
  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