Summary

TOPIC ADDRESSED: Federal Interagency Coordinating Council
SECTION OF IDEA: Part C—Infants and Toddlers with Disabilities; Sections 631–641

Letter

January 2, 2001

Dear Colleagues:

One of the founding precepts of the Federal Interagency Coordinating Council (FICC) was and  continues to be the meaningful involvement of family members at all levels of policy and service delivery planning.  The FICC is also deeply committed to the intrinsic role that families play in assuring that services and supports for young children with disabilities and their families are of the highest quality.  The FICC developed the attached set of Principles of Family Involvement by which public and private organizations can assess their efforts in involving family members in the development, implementation and evaluation of policies and practices.  As such, these Family Involvement Benchmarks are intended as suggested standards of practice.

The FICC endorses these principles and encourages their use in:

• assessing the degree to which your own organizations’ policies and programs conform;
• building awareness among staff and stakeholders of these concepts and their importance;
• facilitating individual and collective dialogue among staff and stakeholders about the importance of these standards to your organization mission;
• exploring the specific changes which these benchmarks imply within your organization and scope of work; and
• encouraging the dissemination of these benchmarks across the early childhood field.

I invite you to partner with the FICC in disseminating and adopting these Principles of Family Involvement and fostering stronger relationships with family members to improve results for young children with disabilities and their families.

Sincerely,

/s/
Judith E. Heumann
Assistant Secretary
Office of Special Education and Rehabilitative Services
Chair, FICC

Attachment

Principles of Family Involvement

Demonstrate family independence and contribution:

• Develop a plan for identifying a diverse, representative group of families to participate.
• During and after meetings, specifically recognize the value of the family’s participation.
• Recognize individual family strengths while respecting the different methods of coping and adjustment.[i]
• Demonstrate how Federal programs support families to attend national conferences.

Provide family identified supports to assist the family’s participation:

• Provide convenient meeting times and locations for family members.
• Compensate families for their time, expertise, and expenses.
• Clearly identify a staff person to be the primary contact person for reimbursement and other issues. Be sure she/he understands that timely reimbursement and contacts are essential.
• Develop provisions that ensure that parents are present to participate in policy related activities including direct staff support, stipends, travel expenses, and childcare.
• Identify these supports in Requests for Proposals (RFP), grants, and policy.
• Provide complete, appropriate information prior to meetings in a timely manner.
• Match veteran parents with inexperienced family members to ensure that new members feel supported in their roles as advisors and have the opportunity to share their ideas.
• Consider incorporating a “family leave” policy so family members can choose an inactive role but maintain their membership should family circumstances require some time off.
• Recognize that some family members may require more and different kinds of support than other to participate in a meaningful way.
• Encourage and facilitate family-to-family support and networking.[ii]

Provide formal orientation for families and provide information for involving them.

• Provide orientation to both family members and staff about the issues, participants, and process.
• Provide informational support for parents to be prepared to participate as equal partners on a “level playing field” with their professional counterparts.
• Provide technical assistance, leadership mentoring, training, and other parent leadership teaming.

Ensure diversity among family members:

• Honor the racial, ethnic, cultural, and socioeconomic diversity of families.[iii]
• Provide all materials in the families’ preferred language.
• Recruit broadly from the community and the population the program serves.
• Bring in new families.
• Adapt collaborative models to diverse cultures. Manage changing distribution of power and responsibility.  Incorporate principles of collaboration into professional education.[iv]
• Insure broad representation among parent groups based upon the community(s) in question.
• Be particularly careful to include members of traditionally underserved groups.
• Avoid any appearance of tokenism.

Be ready to hear what families say:

• Encourage and support family members to find their voice.
• Ensure that parent perspectives are not considered a separate component of the policymaking process, but instead are infused throughout.
• Always consider an individual parent’s story as being valid.

Respect the passion families have for change. Celebrate the partnerships of working together for change.

• Support staff in developing an understanding of the value of family participation.
• Provide clear information about the goals of the board, task force, or committee and the role of individual members and the roles of family members.
• Balance membership on committees between families and professionals.
• Consider shared leadership—parent and professional co-chairs or teaming.

[i] Early Childhood Corner. (2000 Spring). Principles of Family-Centered Care. Newsline, The Federation for Children with Special Needs.

[ii] ibid.

[iii] ibid.

[iv] Epstein, M., Kutash, K., & Duchnowski, A. (Eds.) Outcomes for Children and Youth with Behavioral and Emotional Disorders and Their Families. (pp.233-234). Austin: PRO-ED.

Primarily adapted from: Essential Allies: Families as Advisors. Bethesda, MD: Institute for Family-Centered Care.