National Children’s Disability Network Team Steering Group

Could you be the voice of families?

We are looking for three Family Representatives to join the

National Children’s Disability Network Team Steering Group

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Expressions of Interest

Background
A total of 91 Children’s Disability Network Teams (CDNTs) have been established to provide services for children with complex disability needs. These teams have been established in line with the Progressing Disability Services for Children and Young People (PDS) programme.

The teams are supported by a CDNT Steering Group. The voice of families is central to the CDNT model of service and the steering group is looking for three family representatives to join its membership. The terms of reference for the group are available at Appendix 1.

Role of family representatives
Family representatives are essential to the planning and operation of children’s disability services as they bring their experience and perspective. While it is not possible for you to represent all families of children with complex needs (approx. 50,000 nationally), you will have a wide view of the varying needs of children and young people with disabilities and their families.

Each Community Healthcare Organisation will have a Family Representative Group for CDNTs. You will link with these groups to find out about current priorities across the country.

Characteristics of a successful family representative

  • Is your child accessing or waiting for a children’s disability service?
  • Are you respectful of others and their perspectives?
  • Are you comfortable speaking in a group and interacting with others?
  • Are you a good listener?
  • Are you able to use your personal experience constructively?
  • Can you see beyond your own experience?
  • Are you non-judgemental?
  • Have you a positive attitude?
  • Are you able to work collaboratively with a group?
  • Have you an interest in expanding your knowledge and skills?
  • Have you a desire to bring about meaningful change?
  • Can you maintain confidentiality of service user and organisational information?

How we will support you
Family representatives will receive one-to-one induction on the work of the Steering Group and ongoing support by a named member.

You are not expected to be an expert on the PDS programme, children’s disability services or the health service in general. We will support you to become familiar in time with the policies we work within and how the Steering Group works.

Attendance at Meetings
Three family representatives will be selected for the National CDNT Steering Group. This is so that we have two family representatives at each meeting. Family representatives can agree their own schedule for attending meetings and availability for any working groups that may be established.

Meetings of the National Steering Group are held monthly, generally online via MS Teams with occasional face to face meetings in Dublin.

Travel and subsistence expenses will be reimbursed. For details, see HSE policy here.

Term of Family Representatives
Family representatives will join the Steering Group for a two year term.

Family representatives may serve for a maximum of two terms.

Family representatives will step down within six months of their child being discharged from the CDNT.

In the interests of continuity, a maximum of two family representatives will be replaced after the initial two year term.

Selection process
We are looking for expressions of interest from any family members of a child who is attending a Children’s Disability Network Team or who is waiting to attend.

We will only use the information on the Expression of Interest form to select the 3 national family representatives. We will not share your information with any other party.

Your Expression of Interest forms will be anonymized.

Once the selection process is finished all expression of interest forms will be shredded and no copies will be retained.

Selection criteria
We endeavour to select family representative to include:

  • A geographical spread
  • A mix of urban and rural
  • A range of ages of children with disabilities
  • A range of types of disabilities
  • Diversity as feasible e.g. gender, ethnicity