About Massachusetts Family Voices
Who We Serve
It is estimated that 10.2 million children in the United States have special health care needs. Like other children and youth, those with special health care needs deserve a happy, healthy childhood and youth – attending school, enjoying community events, living with their families, – as well as the opportunity to become productive adults. However, unlike other children and youth, those with special health care needs also have challenging health conditions – physical, mental, or emotional – that can make their lives and their families’ lives more complicated.
We support families with children and youth with special health care needs by:
- Providing a forum for families to connect and share information and resources
- Advocating for improved systems of care for children and youth with special health care needs
- Developing opportunities to partner with health care professionals
- Family-centered care. Because families are at the center of a child’s life, they must be equal partners in decision-making and all aspects of the child’s care. Family-centered care is community-based, coordinated, culturally and linguistically competent, and guided by what is best for each child and family.
- Partnerships. Family-centered care is based upon strong and effective family-professional relationships built within the context of families’ and professionals’ cultural values and practices to improve decision-making, enhance outcomes, and assure quality.
- Quality, access, affordability and acceptability. Children with special needs deserve primary and specialty health care that is of high quality, affordable, within geographic reach and respectful of family and community culture.
- Health systems that work for families and children. Health policies and systems built on a foundation of family-centered, culturally and linguistically competent care must be the standard for all children.
- Informed families/strong communities. Like their peers, children with special needs deserve every opportunity to enjoy a happy and healthy childhood at home in their communities. Families equipped with reliable, accurate information about ways to support their child’s health, education and social development will help them grow into productive adults as defined by their personal, family and community cultural beliefs and values.
- Self-advocacy/empowerment. When informed and supported, young people with disabilities can make choices and advocate for themselves.
Family to Family Health Information Center (F2F):
We are part of a federal initiative which funded F2Fs in every state, providing information and education on health issues for children and youth with special health care needs (CYSHCN).http://www.hrsa.gov/index.html
Authentic Family-Professional Partnerships
Systems Integration Academy (SIA) Innovation grant: a multi-state learning collaborative with the aim of increasing the number of children receiving comprehensive, coordinated care in a medical home setting.<
- Areas of Focus: Integrated Care Coordination, Medical Home, Shared Plans of Care
- Subcontract: MA Department of Public Health/Division of Children and Youth with Special Health Care Needs, 2015-2018
Massachusetts CHIPRA Quality Demonstration Grant: Massachusetts’ Children’s Health Insurance Program Reauthorization Act (CHIPRA) Quality Demonstration Grant (federal CMS) is led by five partners: MassHealth, Children’s Hospital Boston, Massachusetts Health Quality Partners, National Initiative for Children’s Healthcare Quality, and University of Massachusetts Medical School.
- Areas of focus: Medical Home Collaborative – Family Partnerships, Family Advisory Council, Patient and Family-Centered Care
- Subcontract: Boston Children’s Hospital, 2010-2015.