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

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

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.

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

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

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” 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”

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

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

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? 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?

Power of Parents 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

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 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

The Real Child Outcome: