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
Text of Putting the Pieces Together: The Parent Perspective
Putting the Pieces Together: The Parent Perspective
Measuring Child and Family Outcomes ConferenceAugust 27,2008
Joanna: 2 days oldWish I knew then what I know now!
Family Outcomes:To survive 5 weeks in NICU
Joanna: 1 year oldChild Outcomes:Ability to sit up by herselfAbility to pull herself up to standAbility to communicate to get her needs met
Family outcome:How to I teach her to do these things?
Joanna: Age 2Outcomes:CommunicationSocialization
Whats wrong with this picture?
Joanna: Age 10What I had learned:Inclusion was important ifJoanna was going to have friends her own ageI needed to be able to explain her learning style to her teachersI needed to understand her disability and how it impacted all areas of her life.
Joanna: Age 18What Joanna had accomplished:Completed her high school coursework with a 4.0 GPALettered in adaptive bowling and soccer all four yearsMember of the National Honor Society40 hours of voluntary serviceLearned to be a self-advocate
Joanna: Age 22Working full-time in a childcare programPart-time student at St. Paul College , graduating in December with an associate degree in Child Development
Family Involvement at the Federal LevelThe 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 expectationsKeeping it real
Family Involvement at the State LevelICCsPTIs/CPRCsWorkshops for parentsResource materialsNewslettersAssistance for parents in completing surveysSPP/APR Stakeholder Groups
Local ParticipationLocal/Regional ICCs
Parent Advisory Committees
Family ParticipationSetting Child/Family OutcomesWhat do I want for my child and family?Completing Family SurveysHas my family benefitted from Part C services?Collaboration in completing Child Outcome formsIs my child making progress?Program EvaluationAre our local programs providing quality services?How can we improve the quality of the local programs?
Power of ParentsHelp to craft your messageNo 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
The World Beyond Data CollectionSupporting 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 disabilitiesInclusion begins at birthAccess to the communitySocial skills developmentAbility to develop and learn