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Putting the Pieces Together: The Parent Perspective

Putting the Pieces Together: The Parent Perspective. Measuring Child and Family Outcomes Conference August 27,2008. Joanna: 2 days old. Wish I knew then what I know now! Family Outcomes: To survive 5 weeks in NICU. Joanna: 1 year old. Child Outcomes:

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Putting the Pieces Together: The Parent Perspective

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  1. Putting the Pieces Together: The Parent Perspective Measuring Child and Family Outcomes Conference August 27,2008

  2. Joanna: 2 days old • Wish I knew then what I know now! • Family Outcomes: • To survive 5 weeks in NICU

  3. 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?

  4. Joanna: Age 2 • Outcomes: • Communication • Socialization • What’s wrong with this picture?

  5. 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.

  6. 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

  7. 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

  8. 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”

  9. 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

  10. Local Participation • Local/Regional ICCs • Individual programs • Parent Advisory Committees

  11. 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?

  12. Help to craft your message No two parents think alike. Use parent input so you don’t 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 Power of Parents

  13. 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

  14. The Real Child Outcome: 2008 1985

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