Transcript Navigating the Maze Funding Special Needs

The Importance of Family/Professional
Partnerships in the Medical Home
by Gina Pola-Money, Mo.M.
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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
Health Care
services
Educational &
Vocational
Services
Religious/
Spiritual Support
Child/Family
Family
Support
Services
Mental
Health
Services
Financial/
Funding Services
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.
Clinician
Patient
Stress
Encounter
Time
Ptacek, JAMA 1996: 496-502
 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:
105-114
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
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”
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), 217-229.
Caregiver Health
And Well-being
Caregiver
Effectiveness
Child Health
And Well-being
Benson, 2009
“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!
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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
National Survey of CSHCN
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!