Putting the Pieces Together: The Parent Perspective

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Putting the Pieces Together
The Parent Perspective

• Measuring Child and Family Outcomes Conference
• August 27,2008

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Joanna 2 days old

• Wish I knew then what I know now!
• Family Outcomes
• To survive 5 weeks in NICU

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Joanna 1 year old

• Child Outcomes
• Ability to sit up by herself
• Ability to pull herself up to stand
• Ability to communicate to get her needs met
• Family outcome
• How to I teach her to do these things?

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Joanna Age 2

• Outcomes
• Communication
• Socialization
• Whats wrong with this picture?

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Joanna Age 10

• What I had learned
• Inclusion was important if
• Joanna was going to have friends her own age
• I needed to be able to explain her learning style
  to her teachers
• I needed to understand her disability and how it
  impacted all areas of her life.

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Joanna Age 18

• What Joanna had accomplished
• Completed her high school coursework with a 4.0
  GPA
• Lettered in adaptive bowling and soccer all four
  years
• Member of the National Honor Society
• 40 hours of voluntary service
• Learned to be a self-advocate

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Joanna Age 22

• Working full-time in a childcare program
• Part-time student at St. Paul College ,
  graduating in December with an associate degree
  in Child Development

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Family Involvement at the Federal Level

• The ECO Center
• Advisory Board
• Family Workgroup
• The power of parents getting together to
  establish outcomes that make sense to families
  and providers.
• Lessons learned about the power of words
• compared to typical vs. age expectations
• Keeping it real

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Family Involvement at the State Level

• ICCs
• PTIs/CPRCs
• Workshops for parents
• Resource materials
• Newsletters
• Assistance for parents in completing surveys
• SPP/APR Stakeholder Groups

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Local Participation

• Local/Regional ICCs
• Individual programs
• Parent Advisory Committees

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Family Participation

• Setting Child/Family Outcomes
• What do I want for my child and family?
• Completing Family Surveys
• Has my family benefitted from Part C services?
• Collaboration in completing Child Outcome forms
• Is my child making progress?
• Program Evaluation
• Are our local programs providing quality
  services?
• How can we improve the quality of the local
  programs?

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Power of Parents

• Help to craft your message
• No two parents think alike. Use parent input so
  you dont alienate families.
• Use data to effect quality improvement in local
  programs
• Use data to advocate for programs at the local
  level
• Use data to inform public policy and decision
  making

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The World Beyond Data Collection

• Supporting the intent and spirit of IDEA
• Maximize the potential for individuals to live
  independently in society
• Enhance the capacity of families to meet the
  special needs of their infants and toddlers with
  disabilities
• Inclusion begins at birth
• Access to the community
• Social skills development
• Ability to develop and learn

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The Real Child Outcome
2008
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