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Parent groups


Parent groups can be empowering and families often feel that meeting others in a similar situation helps. For the first time, a family may feel less isolated through meeting others going through the same experiences.

Setting up

Parent groups are good for helping to address isolation and bewilderment which often arrives with having a disabled child. Not knowing where to turn for advice is a major issue. Supporting each other within a group can be inspirational.


Setting up and keeping a group going is hard. Successful groups can consist of a few parents meeting in a member’s home or a larger group meeting in a community centre.

Aims and objectives

Aims and objectives can be different too. Not all groups want to take on an adversarial role. Some may simply want to organise activities where families, children and young people can meet socially.

They can be about circulating information covering:

  • Local or national services
  • Fundraising for equipment
  • Social events
  • A vehicle for talks to explore for example the impact of a disability

As a pressure group, where one voice is ignored a group is much harder to brush off.

Building membership

Building a membership is not easy. Generally speaking, the broader a group’s interest the easier it is to attract numbers.

Ways of drumming up support:

  • Contact specialist teachers and ask them to pass on your group’s details
  • Visit paediatric hospitals in your area and ask for a poster to be pinned up highlighting the group, where and when it is next meeting. Staff too, can verbally pass on the group’s details
  • Community based professionals like social workers or health visitors can be asked to pass on information
  • A local newspaper may publish a letter about your group and may even send a reporter to interview you
  • Your local radio station might give you air time or at least pass on your details under the heading of ‘Community Announcements’
  • Pin posters up in, for example, specialist (eye) clinics, your local child development centers or local charities involved with children and young people


Early on, meetings can take place at home but as the group grows a bigger venue will be needed. For example, a church hall, community, health or day centre but do bear in mind some members might find certain settings (health or education) off-putting.

In the beginning, the cost of hiring a venue might be an issue.

Choose a venue near public transport and with:

  • Parking
  • Access for disabled people
  • Refreshment facilities

Arrange meetings to take place on a regular basis. Weekends and evenings are often best with plenty of notice in order to arrange child care. If children attend then someone may be needed to manage them whilst you discuss business.

A meeting designed for parents can represent an opportunity for children with a disability to meet too. However, arranging and supervising this can significantly complicate things.


Choosing a Chairperson will be one of your first jobs. Importantly, control should always remain in the hands of parents.


Avoid your local authority becoming too influential. Whilst the close involvement of local authority professionals and facilities may seem beneficial it can threaten independence. Do try co-opting professionals though in an advisory capacity.

A programme and communication

Plan a programme carefully and start with a ‘getting to know you’ session. During this session encourage everyone to share a little about themselves and their children.

Give notice about what you plan covering during a meeting and circulate an agenda. Minutes should be circulated afterwards too, with everyone encouraged to comment further if necessary.

Guest speakers from education, health or social services are often popular. This also raises the group’s profile within these teams.

Later, you may also have more stories of interest for your local media and this will help spread the word.


Ask for a small membership fee as this will also help with developing a sense of commitment.

Engage with local businesses, particularly if they are major employers, because they may become financial backers.

Tell, for example, your local Women’s Institute and Round Table that you are running when established. These may prove useful funding streams.

Maintaining momentum

To avoid becoming down hearted, especially when setting up, put in place as soon as possible a calendar of events. Arrange for example:

  • Barbecues
  • Day trips
  • Fun runs
  • Parties to celebrate festivals; for example, Christmas and Diwali
  • Parties for members’ children

Start a magazine, book and toy library. This will help both parents and children to get to know each other and overall help everyone to become happier and more confident about the situation.

The next step

Having established:

  • Who you are
  • Where you meet
  • The best time to meet
  • How often you meet
  • What you stand for

You are now ready to share personal knowledge about your children’s needs and your own needs in relation to managing the situation.


  • Parental insight is vital and can often best emerge in a relaxed atmosphere
  • Discuss the specialist provision available in your area and how this compares with provision elsewhere
  • Engage with local and national disability groups and collect information and possibly even materials; for example, large print or Braille books


Campaigning can be useful. For example, you may have become concerned about the level of provision available for your children. However, be aware that addressing things aggressively can label your group confrontational and cause potential allies to distance themselves.

Take advice about the best way forward. Contacting your MP, local paper or councilor about shortcomings in provision may not be the best and most productive way forward. Doing so might ‘raise the temperature’ and create ill feeling

Falling attendance

If attendance is falling consider the following:

  • Are you holding meetings at unsuitable times? You should avoid school holidays, bank holiday weekends and religious holidays
  • Is the arranging of childcare facilities difficult?
  • Is enough time being allowed at the beginning or end of meetings for members to meet, get to know each other and generally socialise?
  • Are the needs of members being met?
  • Are you devoting enough time for attracting new members?
  • Are your original aims still valid?
  • Could you develop links with other local groups?
  • Are there national groups who can put you in touch with other parent groups?
  • Could you link with other groups whose membership addresses a different disability; for example, a group for parents with visually impaired children and young people joining with a group for those who have hearing impaired children and young people?

If you feel isolated, in need of professional support and information see what Families and Special Educational Needs can offer.


A number of groups have set up a telephone help line in an effort to meet the growing needs of parents. Although this may be occurring for pragmatic reasons caution is needed for a variety of reasons. These might include:

  • Staffing a help line, to be available when needed by parents, is a big commitment
  • A help line unanswered or unable to address issues raised will undermine the group’s credibility
  • Information given this way may be too complicated for many parents
  • Some parents are unable to move things forward if not supported face to face
  • A phone line needs to be constantly staffed by experienced and knowledgeable people
  • The person answering the phone needs a firm grasp of for example a child’s requirements, the support needed and how to obtain it, in order to adequately support the child and family
  • The person answering the phone must be able to manage what can often be an emotional situation
  • Trust is hard, if not impossible to develop over the phone

If you feel isolated, in need of professional support and information see what Families and Special Educational Needs can offer.

Copyright 2020