1. What about Lifesharing for children?
2016 Lifesharing Conference
October 18, 2016
Nancy Rosenau, PhD.

2. My focus and purpose
FOCUS: Children with developmental disabilities under age 22 growing up in facilities or at risk of admissions
PURPOSE: To enlist the Lifesharing community in creating opportunities for children to grow up in families instead of facilities

3. Did you know?
Over 3000 children and young adults with disabilities under age 22 are growing up in Pennsylvania congregate care facilities.
Why not living with families?
Limited alternatives for supported family life
Limited focus after admission
Limited awareness of scope of the problem
Multiple types of facilities
Multiple state offices involved

4. Why family life? The developmental imperative:
“ a child requires progressively more complex joint activity with one or more adults who have an irrational emotional relationship with the child. Somebody’s got to be crazy about that kid. That’s number one. First, last, and always.”
Urie Bronfenbrenner, leading developmental psychologist

5. An irreducible need of childhood
“A safe, secure environment that includes one stable, predictable, comforting, and protective relationship with an adult who has made a long term personal commitment to the child’s daily welfare and who has the means, time, and personal qualities needed to carry it out.”
Stanley Greenspan, leading child psychiatrist, Clinical Professor of Psychiatry, Behavioral Sciences, and Pediatrics

6. The developmental dance: dance partners
Parent provides comfort
Parent relishes child’s comfort and being the source of comfort
Parent attuned to child’s distress
Parent anticipates child’s distress
Child feels distress
Child seeks relief from distress
Child receives comforting response
Child is comforted and connects the source of comfort

7. Dancing couples vs. dance partners: It’s the relationship!

8. Developmental risks inherent in facility care
Children raised in facilities have poorer developmental outcomes than children raised in families
Contributing factors:
Multiple caregivers
Rotating shifts
Turnover
Caregiver ratios—caregiver responsibility for multiple children
No primary caregiver—no singular attachment
Lack of long-term caregiver commitment
Scheduled daily interactions--lack of spontaneity

9. We know what it takes to support the developmental dance
Children need families
Families need support
Systems can support families
Systems can support other families when children can’t remain at home

10. LESSONS LEARNED: Essential elements of a system of family-based alternatives to facilities
Michigan (1980s-90s)
Texas
Pennsylvania ?
1. Policy X
Legislation
2. A plan for children
Olmstead plan
3. Tracking
4. Control admissions
5. Family support
Waivers
Alternate families
Community Training Homes
Host families
Lifesharing
7. Providers
DD regions licensed as child placing agencies
Waiver providers
8. Facilitators
9. Monitoring

11. Partner families Commitment to long-term relationship
Voluntary choice of parent (non-CPS)
“Shared parenting”
Time between households
Extended kin (vs. service provider)

12. Facilitators for children living in facilities
Reach out to family
Engage family
Help family to imagine different
Different from services/supports coordination

13. Relationships in partner family living arrangements
Child’s family
Legal decision-maker
Maintains involvement with child
Relationship with partner family
Partner family
Relationship with child
Relationship with child’s family
Nurturing environment
Disability-related child-specific training and skills
Child
Provider agency
Recruitment
Evaluation and selection
Careful matching
Child-specific training and preparation of partner family
Individualized support to child and partner family
Monitoring

14. From systems to real life
Stories
From systems to real life

15. We need you! Lifesharing families Lifesharing provider organizations
Facilitators
Policy decision-makers
Policy-implementers
Imagine Different Coalition

16. RESOURCES Imagine Different Coalition: www.imaginedifferent.org
Position Paper on Children with Disabilities Growing Up in Congregate Care Facilities
Imagine Different Achieve Different! Workbooks
System representatives
Families
Facilitators
Action Memo