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Family-Professional Partners Institute
Partnership Projects

The Institute has built partnerships at:
Clinical Sites
Health Plans
Academic and Research Sites
Community-Based Organizations


Clinical Sites

AFFILIATED PEDIATRIC PRACTICES
APP is a practice group comprising 17 primary care pediatric practices in Greater Boston. The Family Partner created a group-wide Parent Advisory Council (PAC) that includes parents of children with special health care needs and staff from the various practices, then guided the PAC in developing informational resources that all the practices use.

CHILDREN'S HOSPITAL BOSTON
Complex Care Service

CCS is a hospital-based, specialty care clinical program with a caseload of 2,000 families. The Family Partner was hired to organize a Parent Advisory Group (PAG) and guide the development of its vision and mission. The Family Partner also facilitated the creation by the PAG of a Complex Care Service brochure for staff to distribute to families.

MASSACHUSETTS HOSPITAL SCHOOL
The Massachusetts Hospital School is a publicly-funded residential and day school for children with special health care needs. The Family Partner helped develop and deliver a training component used as part of monthly orientation sessions for new employees. The training imparts awareness of families' perspectives in placing their children in a specialized residential school setting.

UMASS MEMORIAL CHILDREN'S MEDICAL CENTER
Pediatric Primary Care Clinic
The clinic's Family Partner launched a Parent Advisory Group (PAG) that includes community leaders, families of children with special health care needs and clinic staff, in order to examine ways to enhance services and identify potential ongoing roles for family members.


Health Plans

BEACON HEALTH STRATEGIES
The Family Partner at this behavioral health managed care organization refurbished and re-energized the Member Advisory Council to ensure member participation and a focused agenda, so that the member voice and perspective are heard at the management level.

BLUE CROSS BLUE SHIELD OF MASSACHUSETTS
Juvenile Diabetes Management Program

This large commercial health plan hired a Family Partner to assist with the development of a new disease management program, which will help them better serve members who have children with diabetes.

HARVARD PILGRIM HEALTH CARE
Member Services Department
The partnership project at this health plan created and piloted a training module for its member services staff.  The Family Partner developed the curriculum and delivered the training, increasing the staff's knowledge of children with special health care needs, particularly in the areas of challenges commonly encountered by families and the resources that are available.


Academic and Research Sites

BOSTON UNIVERSITY SCHOOL OF PUBLIC HEALTH
Maternal and Child Health Department
The partnership project at this graduate-level university training program identified strategies for increasing family participation and perspective in the curriculum.  The Family Partner conducted a needs assessment with both students and faculty and developed recommendations for the future.

CHILDREN'S HOSPITAL BOSTON
Pediatric Intensive Care Unit
A Family Partner was brought in to assist in the design, data collection and analysis of a physician-led research study. The research, which looked at the barriers to optimal care facing children with special health care needs requiring intensive care, included in-depth personal interviews of parents.

HARVARD SCHOOL OF PUBLIC HEALTH
Health Literacy Research Project

This Family Partner is participating in a research team studying health literacy among English- and Spanish-speaking parents of children with special health care needs. Specifically, she is helping to develop interview and survey instruments that reflect the family perspective, and assisting with data collection.

OPENING DOORS RESEARCH & TRAINING CENTER
On Children and Youth with Disabilities and Special Health Care Needs
At Children's Hospital Boston and the Institute for Community Inclusion (ICI) at UMass Boston
Opening Doors is a multi-site research demonstration project to improve health and social outcomes for culturally diverse children and youth with special health care needs. The Family Partner's role is to facilitate connections among the research management team, the staff at three project sites, and leaders at nine community-based organizations; to obtain input from families to be incorporated into project planning and materials; and to develop and chair a consumer advisory group for the overall project.

SIMMONS COLLEGE
Department of Sociology

This Family Partner is assisting faculty in the qualitative component of a research study entitled �Transition to Adulthood among Youth with Disabilities.� The research involves in-depth interviews with 60 youth and their parents. The Family Partner is developing interview tools, training staff, and forming youth and parent advisory councils.


Community-Based Organizations

ERITREAN COMMUNITY CENTER OF GREATER BOSTON
This volunteer-staffed community organization serves approximately 100 Eritrean families. The Family Partner is conducting outreach and building on an existing monthly mothers' meeting to create a new program to support ECC parents of children with special health care needs.

GREAT WALL CENTER
The Family Partner at the GWC is enhancing the membership and activities of its Parent Association, particularly its support network for parents of children with disabilities and other special needs. The GWC provides culturally relevant social service programs for the Asian community in Malden.

HAITIAN-AMERICAN PUBLIC HEALTH INITIATIVES
HAPHI is a service, advocacy and outreach organization serving the local Haitian community. The Family Partner was brought on to increase the number of families served by HAPHI's Family Support program, develop informational programs and materials about area services, and identify steps for continuing to expand HAPHI's services to families raising children with special health care needs.

MEDICAL-LEGAL PARTNERSHIP FOR CHILDREN
At Boston Medical Center

The Medical-Legal Partnership provides legal services for vulnerable families within a clinical setting. The Family Partner is identifying ongoing, concrete roles for family members that ensure the family perspective is represented in the program, and exploring opportunities to create direct links between the families they serve and family advocacy organizations.

 

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