The Importance of Family/Professional Partnerships in the Medical Home by Gina Pola-Money, Mo.M.

 Children with special health care needs are those children who have or are at risk for chronic physical, developmental, behavioral or emotional conditions and who also require health and related services of a type or amount beyond that required by children generally. ◦ Over 11% of Utah’s children have a special health care need

THE FAMILY-CENTERED CONCEPT Mental Health Services Educational & Vocational Services Family Support Services Financial/ Funding Services Health Care services Religious/ Spiritual Support Child/Family

A good partnership happens when parents and professionals want to work together to reach the same goal. It is not always easy, especially if there is disagreement about the best thing to do. Partners work together to find answers and respect the expertise of all involved.

Collaborative partnerships often take time and effort to achieve. Knowing how to interact can be critical to the successful advocacy for children.

Ptacek, JAMA 1996: Stress TimeEncounter Patient Clinician

 Three months after parents received bad news 12 of 23 sets took in “little or none of the information given” 4 of 23 sets denied that a separate information session had occurred 10 of 19 sets remembered the information session, but didn’t understand the content Eden, Pall Med 1994:

Survival State Denial; Anxiety; Fear Searching State Inner and outer thoughts; Guilt; Shame; Depression; Anger Settled In State - Hope, New Dreams, Different expectations

Parent to Parent Research – Key Findings Singer, G., Narquis, J.G., Powers, L.K., Blanchard, L., DiVenere, N., Santelli, B., Ainbinder, J., & Sharp, M. (1999). Journal of Early Intervention. 22(3), Had a significant impact on parents’ cognitive adaptation to their child’s disability Helped parents progress forward in getting help for their situation 89% of the parents rated it as helpful Parents experienced gains in their perceived ability to cope with their child and family Especially helpful to exchange practical information and to talk to someone who had already “been there”

Benson, 2009 A Vicious Cycle Caregiver Health And Well-being Caregiver Effectiveness Child Health And Well-being

“A FAMILY WITHOUT INFORMATION CANNOT TAKE RESPONSIBILITY AND FEELS HELPLESS; A FAMILY WHO IS GIVEN INFORMATION CANNOT HELP BUT TO TAKE RESPONSIBILITY AND FEELS EMPOWERED.” GP-M 2000

FAMILIES WANTS, NEEDS AND DESIRES ARE DEPENDENT UPON THE INFORMATION, TRUST, COMPASSION, RESPECT, EMPOWERMENT AND SERVICES THEY RECEIVE!

National Survey of CSHCN  Dissatisfaction with school/community services  Not enough qualified providers  Long waiting lists  Services not available in the area  Unmet need for family support services  Higher levels of stress

Families of children with special health care needs are among the most knowledgeable people about what is working well and not so well in the system. They can be essential sources of information and support to providers in helping to improve policies, procedures and programs, and important allies in more general efforts to create better systems of services and care.

HUMOR, LOVE FOR OUR CHILDREN AND EFFECTIVE SUPPORT IS WHAT GETS US THROUGH!