BUILDING RESILIENCE IN FAMILIES OF CHILDREN WITH DISABILITIES

BY LAUREN AGORATUS, M.A.

Looking at family strengths and building on them, families can advocate for their own child and later for other families on systemic issues.

STRENGTH VS. WEAKNESS

Parents of children with disabilities may feel the need to be strong. However, even if they don't feel as strong as they might like, their lived experience is invaluable in creating change. Parents have unique experiences in medical systems, schools, special education, and family support programs. Families need to know that they are the experts on their child. One mother of a daughter with a disability said she had her M.O.M. degree. There are family support programs such as Strengthening Families, Parents Inc., or Parent-toParent (see Resources). Often, families who are helped find they later want to give back and help other families.

HOW FAMILIES CAN CREATE CHANGE

"Nothing about us without us!" Families and self-advocates are stakeholders and must be involved in all levels of program creation. This includes even the initial stages of research and data collection, so the end product will be what families need, not what someone else thinks they need. For example, CYSHCNet (Children/Youth with Special Health Care Needs Network) links families of children with disabilities to researchers in partnership in their Emerging Investigator Program. CYSHCNet has recently expanded this to recruit families and other experts for their Advisory Committee. Maternal Child Health programs have families testify at their block grant hearings. Families in NJ serve on school district Special Education Parent Advisory Groups (see spanadvocacy.org/programs/start/county). Parents can attend State Interagency Coordinating Councils for early intervention or State Advisory Panels for special education and can provide public comment at meetings, and even be appointed to serve on these important groups. Families and self-advocates can attend board meetings of disability-specific organizations or Centers for Independent Living and again offer input or even serve on Boards.

WHAT IS FAMILY ENGAGEMENT?

Family engagement involves an equitable partnership with professionals to ensure best outcomes. Family Voices has a toolkit on how families can create systems change. The four domains of family engagement are:

• Representation (all families)
• Transparency (information access)
• Impact (changes were due to families)
• Commitment (family engagement at all levels)

It is essential that all families, including diverse and underserved families, are at the table.

FOUR DOMAINS OF FAMILY ENGAGEMENT IN SYSTEMS

REPRESENTATION

• Reflect the diversity of the community (race, ethnicity, language, income, education level, and geography)
• Partner with family-led and community-based organizations

TRANSPARENCY

• Provide access to relevant knowledge
• Practice partnership in all parts of the process

IMPACT

• Identify what has changed and what the organization or system of care is doing differently because families were involved

COMMITMENT

• Promote engagement as a core value
• Establish engagement at all levels, in all systems of care