F AMILY V OICES SHARES T OOLS, R ESOURCES, AND I DEAS TO I MPROVE F AMILY -C ENTERED C ARE : Supporting families with children with special health care.

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

[email protected]

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