MaineFamilyVoices

A national grassroots network of families and friends speaking on behalf of children with special health care needs.

Maine Family Voices

Maine Parent Federation provides statewide coordination for Family Voices activities in Maine. In 1998, Maine Parent Federation was awarded a Robert Wood Johnson Foundation grant from National Family Voices to expand efforts in Maine to reach families of children with special health care needs. The Maine Family Voices project provides the opportunity for families of children with special health needs to become informed and active members of a network that will speak out on issues on behalf of children with health care issues.

Goals of the project:

To create a network of well informed family members

Support families to be responsive to health care issues at the state and national level

To establish a family support component to provide information and training

What's Happening

Hired a part-time staff person

Formed a Family Advisory Council

Outreach to families of children with special health care needs and the professionals who work with them

Have fact sheets available on the Children's Health Insurance Program and Managed Care

Developed a family health care survey as a collaborative effort with Consumers for Affordable Health Care (If you have not completed our survey, please call us at 1-800-870-7746 (Maine Only) for a copy)

National Family Voices

These Are Our Children.

Our children with special health care needs are, above all, children who want to have a healthy, happy childhood and grow up to be productive adults. Like all children, they live with their families in the towns, cities, and rural areas of the United States, attending school, going to church, and enjoying community events. However, unlike most children, they also have challenging health conditions that usually make their lives and their families' lives more complicated. Some of our children have physical, mental, or emotional disabilities; others live with a chronic illness; many present a brief but life-threatening medical problem. Some of our children need only an accurate diagnosis and routine treatment and monitoring; others will require life-sustaining technology treatment, and medicines through out their lives. Children with special health needs tend to receive their health care from a combination of private and public financing and delivery systems. About 10 million children have a chronic health condition of some kind; about four million children have a health condition that limits their school and play activities.

This Is What Family Voices Does.

Family Voices is a national, grassroots clearing house for information and education concerning the health care of children with special health needs. We stay on top of public and private sector health care changes that affect our children and families through the collective efforts of our families: a volunteer Coordinator in every state; 10 Regional Coordinators; and a small staff working in several locations around the country. Together, we share the expertise and experiences of families from around the country with state and national policy makers, the media, health professionals, and other families. We work in public and private hospitals, public health programs, in state capitals, in Washington, DC, serving on boards and task forces, working in partnership with health professionals and policymakers, bringing the family perspective to policy discussions and decisions. There are almost 7,000 Family Voices members - families of children with special health needs and friends and professionals who know and love our children.

The Principles of Family Voices Guide Our Activities.

Above all, Family Voices believes that:

All children deserve quality health care.

Families with children who have special needs and professionals who work with them have an expert understanding of what works and what doesn't work within current health care systems.

Health systems built upon a set of tested principles and practices that flow from this expertise can improve the health status of all children and families.

Therefore, health systems serving children with special health care needs must adhere to the following principles:

1. Families are the core of any health system.

All Families, including those who have children with special health needs are the primary caregivers and educators for their children. They should be respected and valued for their expertise and commitment to their children.

2. Universal access.

In order for this nation and its children to be healthy, it must guarantee unconditional access to quality primary and specialty health care at a reasonable price - regardless of a family's health, income, employment, location, pre-existing condition, or prior utilization of services.

3. Flexibility.

Whether public or private, a health care system must provide effective, flexible services that are guided by medical and family needs, rather than by the policies of standard medical insurance practices or government bureaucracies.

4. Comprehensive, coordinated, community-based care.

Quality health care means a coordinated system of comprehensive services - prevention, education, screening, diagnosis, primary and specialty care, hospitalization, medication and supplies, equipment and rehabilitation - all available as close to the family's home as possible.

5. Family-professional partnership.

Outcomes improve when families and professionals make decisions jointly, respecting the expertise, talents and resources that each brings to the care of the child with special health needs.

6. Cost effectiveness.

By focusing on outcomes, allowing family choice, and strengthening and supporting the role of families in health care systems, costs can be reduced. The elimination of duplicative procedures, unnecessary paperwork, and administrative overhead also reduces costs. As families, we practice cost containment every day!

7. Quality assurance.

Working as partners and remembering these principles, families and health professionals must regularly review and provide feed-back on health care financing and delivery.

JOIN FAMILY VOICES

If you want to be part of a grassroots movement to make sure that children with special health care needs receive the health services they need and deserve or if you have a specific question or concern, give us your name, address, telephone number. You may either e-mail us at parentconnect@mpf.org, call us at 1-800-870-7746 (Maine only) or (207)623-2144 or write to us at:

Maine Family Voices
Maine Parent Federation
PO Box 2067
Augusta, ME 04338