The Importance of Family Involvement
By Mary Castro Summers, Project Director, Family TIES of Massachusetts (FCSN)
Families of children and youth with special health needs address a wide range of concerns on a daily basis. How do I keep my child healthy, safe, and happy? Can I provide opportunities for my child’s growth and development to enhance their life today and in the future? Almost every minute of the day is focused on assuring proper health care, academics, social needs, and a sense of well-being for their child.
It is also crucial for parents to focus on a different aspect of family involvement: family advocacy. A strong team approach can deepen understanding of a child’s talents and needs. Together, child-specific, appropriate services and systems of care can be actualized.
When parents are able to articulate and demonstrate their child’s skills, challenges, and progress, the child’s medical team, therapists, teachers, and community supporters all benefit. This strategy can reduce frustration for everyone and increase the likelihood that a child’s healthcare, educational, and social needs will be met.
Sometimes, parents are unaware or uneasy about their role on a team. Many parents believe they need medical, educational, or professional training to boost their status in discussions about next steps for a child’s complicated future. They may feel that doctors and educators have years of training and experience with many children, while they only have experience with their own child. Family and cultural traditions may impact a parent’s ability to feel like an equal with trained professionals.
What some parents lack is the awareness that when it comes to their own child they are the most important experts in the room. Nobody understands their child’s unique needs like they do, and this really matters.
Parents need to feel confident in their skills to participate in the many teams that support their children. There are a variety of Parent Leadership programs and opportunities that can bolster a parent’s understanding of their powerful role, as well as develop skills to enhance their participation. Minnesota developed the Partners in Policymaking program in 1987; studies in 1996 “found that the training enhanced families’ practical advocacy skills, opportunities for networking with other families, and a greater sense of self-confidence.”1
Since its inception the Federation for Children with Special Needs has led the way in advocacy training and leadership for families. The agency is founded on a strong belief in the strength of a parent-to-parent, peer model, which has been crucial as parents rise to leadership positions in schools and SEPACs and in healthcare and community settings. Parent training is a component of the Federation’s many projects, around topics of education, special education, transition, health, and community outreach. A strong belief in the strength of a parent to parent, peer model has helped parents rise to leadership positions in SEPACS and schools, healthcare and community settings.
Mass. Families Organizing for Change, first funded by Mass. Department of Developmental Services in 1990, has led family leadership trainings and activities across the state. Through its vision for empowerment and focus on individuals with disabilities and their families, Leadership Series participants are introduced to the history of the movement for family advocacy, creative ways to envision the future for individuals with disabilities, and an overview of national, state, and local policymaking to bring forth their visions to reality. For many participants, this is a first opportunity to team up with other family members and develop a sense of the value of working with other families who share similar life experiences, with a goal of systems change.
More recently, the Office of Family Initiatives of the Mass. Department of Public Health has offered the Family Leadership Training Institute. The Institute responds to an understanding by federal and state governments that consumer input is essential to develop meaningful systems of care to address the needs of children & youth with special health needs and their families. Participants in the Institute focus on developing knowledge and skills related to family advocacy, become part of a community, receive mentorship, and have opportunities to practice the skills they learn by working on a community action project where the family perspective makes a difference. The training fosters a deeper understanding of current services and builds skills to enhance parental involvement in improving or developing systems of care.
Family TIES of Massachusetts coordinates the Share Your Voice! program to offer family involvement in planning activities for its funder, the Mass. Department of Public Health, Division for Children & Youth with Special Health Needs. A past effort brought family perspectives to emergency planners around the state to ensure that children and youth with special health needs have access to emergency services during times of local disaster. Parents have participated in program reviews, including for Early Intervention and the Pediatric Palliative Care Program, as well as a number of other opportunities.
Parents may contact their local Family TIES Regional Coordinator for more information about any of these training programs or to join the Advisor Program: 800-905-TIES (8437) or visit massfamilyties.org. Together, we all make a difference.
1Schuh, Ml., Hagner, D., Dillon, A., & Dixon, B. (2015). The outcomes of family and consumer leadership education: creating positive change in disability policy and practice. Health Psychology Report, 3(2), 11-122, DOI: 10.5114/hpr.2015.50173.