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 Badeaubadeaufamily@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 AdulthoodEquipping child to become their own self-advocateMoving 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 EducationDon’t allow “inclusion” practices to work against you at this

stageExamples: 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_Overview_Presentation_Development.ppt