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