f amily v oices shares t ools, r esources, and i deas to i mprove f amily -c entered c are :...
TRANSCRIPT
FAMILY VOICES SHARES TOOLS, RESOURCES, AND IDEAS TO IMPROVE FAMILY-CENTERED CARE:
Supporting families with children with special health care needs and disabilities.
MATERIALS DEVELOPED BY THE TENNESSEE DISABILITY COALITION WITH FUNDING FROM:
- The US Department of Human Services’ Health Resources and Services Administration, Maternal and Child Health Bureau (Project # H84MC00004-09-00)--The Tennessee Affordable Care Act Family-to-Family Health Information Center.
- Tennessee Department of Health, Maternal and Child Health, Newborn Screening Program (Contract Number GR1235519)
- The Tennessee Disability Coalition
SESSION OVERVIEW All about Family Voices of Tennessee
F2FHICStaffNBH program
Care NotebooksStaying on Track notebookFIN notebooks
Family-Centered Care Resources
FAMILY VOICES OF TENNESSEE
History
F2FHIC
Staff=Family
NBH program
FAMILY VOICES
Family-Voices, Inc., was founded in 1992 by family leaders concerned about the changing health care environment and the implications for our children with disabilities, chronic illnesses, or other special health care needs.
Family-Voices of Tennessee started in 1993 as a program of the Tennessee Disability Coalition and became the first state chapter formally sanctioned by the national organization in the last quarter of 2000. Family-Voices of Tennessee was one of six Family-
Voices state programs during 1999-2001 to participate in a pilot program to develop Family-to-Family Health Information Centers (F2FHICs).
FAMILY TO FAMILY HEALTH INFORMATION CENTER (F2FHIC)
Assist families as they navigate public and private health systems and insurance plans (including TennCare and commercial plans)
Educate families about how to access services and resources for their children and how to work with health providers
Listen to families as they describe their encounters with health systems and help guide them to possible solutions
Work with families, health care providers, public and private agencies, and advocacy or support groups to promote family-centered care and medical homes for children with special health care needs
Promote discussion and linkages among families, providers, managed care programs, and government to better serve the health care and related needs of children and families in Tennessee
STAFF=FAMILY
Family Resource Specialist are all parents of children with special health care needs.
Families live all across the state in communities they serve.
Work with families to find opportunities for families to be at the table such on councils and committees that focus on children with special health care needs.
NEWBORN HEARING PROGRAM
The NBH Parent/Family Consultants provide:
resources and/or emotional support for families
who have children who are deaf/hard of hearing.
provide information on different communication
devices and modalities.
share our stories in hopes of helping other parents.
collaborate with other agencies/organizations that
provide support and services to the deaf/hard of
hearing communities (i.e. Hands & Voices, etc.).
Bilingual family consultant on staff.
STAYING ON TRACK : CARE NOTEBOOK
Goal of notebook: Empower and educate families. Provide emotional support by connecting
families. Maintain lines of communication.
Inside the notebook: Monthly calendars. Checklist of info requested by providers. Appointment records. Info providers may request from you about your
child. Note section. And MORE!
FAMILY INFORMATION NOTEBOOK (F.I.N.)
Great tool for effective health care preparation and advocacy!
DOCUMENTATION AND ORGANIZATION
Document daily routine
An excellent resource for other caregivers
Essential information in an emergency/disaster
situation
Central place to document special equipment
needs
Organize school documents and records
EDUCATION AND SCHOOL INFORMATION
Schools attended (include names of therapists and teachers)
Episode or event log
Important school contacts (e.g., coordinator, teacher, etc.)
Other information related to medical/ behavioral condition(s) to be shared with school
EDUCATION ANDSCHOOL DOCUMENTS
Tennessee Early Intervention Services (TEIS)
evaluations and Individual Support Plans
(ISPs)
Copy of Individual Education Plans (IEPs)
Report Cards
School Evaluations
Transition Plans
Post-secondary information and plans
WORKING TOGETHERTreat me as your equal and as a
partner.Try to see the world through my
eyes.Give it to me straight and with
sensitivity.It is okay to say “I don’t know.”Say, “Let’s find out.”
WE CAN HELP ONE ANOTHER
Learn from my experiences. Respect my choices. Help me connect with other families. Ask me how I’m doing. It is not always denial, I call it hope.
FAMILY-CENTERED CARE
Respecting the pivotal role of the family as caregiver, advocate, decision maker.
The role of professionals is to support families in their care giving roles.
Based on family’s values, preferences, priorities, and needs.
ELEMENTS OF FAMILY-CENTERED CARE
The family is the constant in a child’s life, while service systems and support personnel within those systems fluctuate.
Parent/professional collaboration at all levels of hospital, home, and community care: Care of an individual child Program development, implementation, evaluation,
and evolution; and Policy formation
ELEMENTS OF FAMILY-CENTERED CARE
Honoring cultural diversity, strengths, and individuality of families: ethnic racial spiritual social economic educational geographic
ELEMENTS OF FAMILY-CENTERED CARE
Respecting different methods of coping and implementing comprehensive policies and programs that meet diverse needs of families:developmentaleducationalemotionalenvironmentalfinancial
ELEMENTS OF FAMILY-CENTERED CARE
Encouraging and facilitating family-to-family support and networking.
Ensuring that service and support systems are: flexible accessible comprehensive
ELEMENTS OF FAMILY-CENTERED CARE
Appreciating families as families and children
as children, recognizing that they possess a
wide range of strengths, concerns, emotions,
and aspirations beyond their need for
specialized health and developmental services
and support.
WHAT DO YOU SEE?
Although our lives are often consumed by medical issues, medical issues should not
define our lives.
Family Resource Specialists:West TN: Treva Sease
Middle TN: Tonya [email protected]
East TN: Camille [email protected]
Family-to-Family Health Information Center
of Tennessee
FOR MORE INFORMATIONOR SCHEDULE A TRAINING
Family Resource Specialists and Newborn Parent Consultants
955 Woodland StreetNashville, TN 37206
615-515-8626/(888) 643-7811