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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: - PowerPoint PPT Presentation
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Putting the Pieces Together: The Parent Perspective Putting the Pieces Together: The Parent Perspective
Measuring Child and Family Outcomes ConferenceAugust 27,2008
Measuring Child and Family Outcomes ConferenceAugust 27,2008
Joanna: 2 days oldJoanna: 2 days old
Wish I knew then what I know now!
Family Outcomes:•To survive 5 weeks in NICU
Joanna: 1 year oldJoanna: 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 2Joanna: Age 2
Outcomes:•Communication•Socialization
What’s wrong with this picture?
Joanna: Age 10Joanna: Age 10
What I had learned:•Inclusion was important ifJoanna 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 18Joanna: 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 22Joanna: 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 Family Involvement at the Federal Level
The ECO CenterAdvisory BoardFamily 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 CenterAdvisory BoardFamily 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
Family Involvement at the State Level
ICCsPTIs/CPRCs
Workshops for parentsResource materialsNewslettersAssistance for parents in completing
surveysSPP/APR Stakeholder Groups
ICCsPTIs/CPRCs
Workshops for parentsResource materialsNewslettersAssistance for parents in completing
surveysSPP/APR Stakeholder Groups
Local ParticipationLocal Participation
Local/Regional ICCs
Individual programs
Parent Advisory Committees
Local/Regional ICCs
Individual programs
Parent Advisory Committees
Family ParticipationFamily 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 ParentsPower 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
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
The World Beyond Data Collection
Supporting the intent and spirit of IDEAMaximize the potential for individuals
to live independently in societyEnhance the capacity of families to
meet the special needs of their infants and toddlers with disabilities
Inclusion begins at birthAccess to the communitySocial skills developmentAbility to develop and learn
Supporting the intent and spirit of IDEAMaximize the potential for individuals
to live independently in societyEnhance the capacity of families to
meet the special needs of their infants and toddlers with disabilities
Inclusion begins at birthAccess to the communitySocial skills developmentAbility to develop and learn
The Real Child Outcome:The Real Child Outcome:
1985
2008
