NFXF LINKS Groups and FX Clinics – Working Together

Family Advisory Councils (FAC) Guidelines

One of the significant objectives of the FXCRC grant includes establishing a Family Advisory Council (FAC) for each FX clinic. The FAC will serve as a bridge between the local LINKS group(s) and the local Fragile X clinic for the purpose of:

Advising the clinic on policy and decisions affecting and/or related to clinic services.

Recommending priorities for clinic services to be addressed by the clinic in their short and long term planning.

Working together to develop comprehensive information about local and state disability resources.

Responsibilities

LINKS Groups

  • Create and maintain a directory of community resources for use by LINKS Group and clinic staff when orienting new families
  • Provide educational and emotional support for parents, families and individuals impacted by Fragile X

FX Clinics

  • Help the local LINKS Group plan and implement outreach activities utilizing clinic and NFXF resources to locate underserved families
  • Provide support for LINKS Group activities such as educational seminars and fundraising events – space, speakers, participation, etc.
  • Develop strategies to work together with LINKS group to advocate for increased availability and access to services in their communities
  • Training and support for parents, families and individuals with Fragile X e.g. IEP advice and consultation

To facilitate and develop cooperative working relationships between the LINKS Group(s) and FX Clinic the NFXF suggests the following activities be addressed by the FAC:

  1. Support and encourage the involvement of families in both LINKS group and clinic activities
  2. Develop a relationship with the state developmental disabilities council
  3. Serve as a forum for the expression of concerns and recommendations pertaining to clinic services
  4. Identify and help implement annual goals on behalf of the clinic e.g. increase the number of families served, identifying specialists necessary to provide complete FXD services, etc.
  5. Identify and implement annual goals for the LINKS group e.g. organizing an educational or social event, etc.

Membership

Ideally, the FAC will include a minimum of two LINKS Group representatives and at least one clinic representative. If multiple LINKS Groups are working in partnership with a clinic, one member of each LINKS Group should be represented on the FAC. If there are current family advisory councils at work with the Clinic a representative from each LINKS Group should be included.

Terms of Office

LINKS Representatives to the Family Advisory Council will ideally serve a term of one year and may serve a total of three terms.

Meetings

FACs are encouraged to meet at least once a quarter, preferably in person. While conference calls are acceptable FACs must meet at least once annually in person.

Meetings will be limited, as much as possible, to no more than two hours in length.

Regular phone and email communication between the clinic representative and the LINKS Group representative is expected throughout the year.

Agendas will be prepared so that meetings can be efficient and end on time. Council members are encouraged to provide participants with all necessary information prior to the meeting to aid in the discussion.

FAC will prepare a meeting summary to be presented to the NFXF. That report will summarize the activities and accomplishments of the council for each quarter.

LINKS Group representatives can seek reimbursement from the NFXF for mileage and parking expenses associated with attending a meeting upon receipt of the meeting summary.