Parent to Parent Definitions Parent to parent support, promoted by Parent to Parent USA, is the intentional matching of an experienced, prepared, Support Parent with a parent seeking peer support Parent to Parent Programs nationally are statewide organizations providing support and information to families with children who have special health care needs, a disability or mental health issue most notably through parent to parent support.

Parent to Parent Support “When you come to a place where the streets are not marked” Dr. Seuss Parent to Parent support can be a life-line, knowing there is an experienced guide, a trusted ally, a listening partner just a phone call away.

Parent to Parent “ Parent to Parent support….is an intentional connection with another parent who has already learned the language and found the resources…..someone who has “been there.”

Parent to Parent Support Polly Arango, Co-Founder of Family Voices, a national organization of families and friends advocating for health care services….calls parent to parent support “the cradle of leadership”

Kathy’s Story

Parent to Parent of Pennsylvania Director Greatest Obstacle: Fly plane while we build it! Achievements: - Deputy Secretary directs EI staff to distribute P2P brochure to all intakes –Collaborate with Family Consultants –Medical Home Initiative –Natural Allies (Parents as Presenters) –Matching families in community with those exiting state centers/nursing homes –Provide P2P within existing conferences

My inspiration!

Founder and Director of Parent to Parent of Vermont Family Support One to one matches, NICU Support Group, Parent to Parent office within Children’s Hospital & Medical Home Practice Family Faculty Parents teaching medical students (required of all medical students during their Pediatric Core Rotation) Pediatric Residents matched with families Family Faculty Center of Excellence LEND Program Family Infant and Toddler Project (Part C Program) Family Voices of Vermont

Parent to Parent timeline Grassroots effort began in Omaha, Nebraska early 1970 With significant support from Ann and Rud Turnbull, co-directors of The Beach Center on Disability: In1988 hired Betsy Santelli to survey all programs in the country statewide and local identifying over 500 local and 30 statewide programs with staff from 1-25 and budgets from $15,000 to 1 million +

Facilitated Annual Parent to Parent Director’s meetings Networked emerging and experienced programs Assured biennial International Parent to Parent Conferences Facilitated Research Study

The Research Study  Funded by National Institute on Disability and Rehabilitative Researcher (NIDRR)  Participatory Action Research with families and researchers involved from study design to publications  Conducted in five states Kansas, New Hampshire, North Carolina, South Carolina, and Vermont; 128 families participated in the Quantitative study, 24 in the Qualitative Study

Research Results Families felt less isolated and more confident in their ability to care for their child and more hopeful about their future Parent to parent was helpful for a majority of parents from diverse backgrounds and across all income levels Parents who participated made significantly more progress in getting their needs met compared to parents in the “wait group”

Research Results Parent to Parent support Increases parents’ adaptation to their situation Helps parents better manage their day-to-day lives and helps parents find answers to their questions 89% of parents in the study Parent to Parent support to be helpful

Research Results Although professionals can, and do, offer many important services, their language, viewpoint, and day to day experience is simply very different from that of family members…they do not know the 24-hour reality of parenting a child with special needs…Support Parents, on the other hand, do understand this reality.” Singer, G.H.S., Marquis, J., Powers, L.K., Blanchard, L., DiVenere, N. Santelli, B., (1999) A Multi-site Evaluation of Parent to Parent Programs for Parents of Children with Disabilities. Journal of Early Intervention, Vol. 22, No

The American Academy of Pediatrics Policy Statement on family-centered care and MCHB AAP Bright Futures Guidelines for Health Supervision of Infants, Children and Adolescents (in press) recommends that:

Pediatricians facilitate family to family support as part of a comprehensive care plan for children with special health needs. [1] American Academy of Pediatrics, Committee on Hospital Care, Institute for Family-Centered Care Policy Statement (2003) Family-Centered Care and the Pediatrician’s Role. Pediatrics, Vol. 112 No. 3. American Academy of Pediatrics, Care and the Pediatrician’s Role. Pediatrics, Vol. 112 No. 3.

Parent to Parent Program Evidence-Based Practice Program maintains the capacity to match families with diverse experiences including but not limited to ethnicity, culture, race, language, socio-economic, disability, special health need, and other child/family related factors Program participates in continuous quality improvement efforts

The Match Evidence-Based Practice Criteria for the match are driven by the concerns, needs and priorities of the Referred Parent Matches are made within hours of request Support Parent makes at least 4 contact within the first 8 weeks of receiving the match

Parent to Parent Program Implications There is a strong relationship between the number of contacts a parent has with a Support Parent and how helpful the parent finds Parent to Parent support to be Perceived sameness is a fundamental ingredient for success in a Parent to Parent match

Statewide Parent to Parent Programs Criterion for P2PUSA website: –Parent to parent support is a core program component –Parent to Parent program serves families statewide, across disability special health care need –Commitment to implementing evidence- based practices –P2PUSA survey completed 37 Statewide programs 4 states have local parent to parent contact information

Parent to Parent Program Implications Evidence-based practices for Recruiting & Training Support Parents Evidence-based practices for Matching & Follow-up

Parent to Parent USA With funding from the Robert Wood Johnson Foundation we developed our website & identified and surveyed statewide programs Nancy DiVenere, Parent to Parent of Vermont Mary Slaughter, Raising Special Kids – Arizona, Kathy Brill, Parent to Parent of Pennsylvania & Connie Ginsberg, Family Connections of North Carolina

Our Commitment to Programs Connect families to statewide parent to parent programs Provide technical assistance to emerging and experienced programs in implementing Quality Standards Link families to important resources

Promoting Quality Standards Available on our web: Summary - Evidence-based practices for Parent to Parent Support Evidence-based practices for Recruiting & Training Support Parents Evidence-based practices for Matching & Follow-up

Parent to Parent USA

Our Vision Access to evidence-based parent to parent support nationally We believe family support is an essential part of health care for families with children who have a special health care need or disability.

Our Vision Promote: Access Quality Parent Leadership Research Family Support Policies Access & Quality –A national network of statewide programs implementing evidence- based practices –Partnerships in states between established and emerging programs –TA available to children’s hospitals, statewide family support organizations, Medical Home practices and others implementing parent to parent programs

Our Vision Promote: Access Quality Purple = statewide program Blue = contact info only Grey = no statewide program

Our Vision Promote: Parent Leadership –Host Annual Leadership Meetings –Develop TA capacity Research –Research on evidence- based family support practices –Partner with the Beach Center on Disabilities to collect and codify Family Wisdom Family Support Policies

Our Website has the following features: Text from The Parent to Parent Handbook, a Brookes Publishing Company publication, detailing programmatic and organizational steps for developing, funding and marketing a peer support program Detailed information and link to all 37 statewide programs

Parent to Parent USA 2007 Survey Purpose – to establish a national picture of parent to parent program practices Results will be used to provide technical assistance to existing and emerging programs in implementing evidence-based practices

How to Implement Evidence-based practices Gather materials from programs implementing evidence-based practices Design TA materials as needed

Opportunities for Parent Leadership Beach Center on Disability –Researching Family Wisdom