How To Reach Disabled Parents Of Disabled Children

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Clifton Harper
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1 Section 5 - Developing Parent Participation b) Reaching Parents of Disabled Children Subject: How to Engage a Varied and Wide Constituency of Parents in Consultations and Participation Who this is for: Particularly relevant to senior managers and to parent forums What this section is about: Who are the hard to reach parents? Engaging the interest of as many parents as possible working through front line staff working through specific disability parents groups holding fun events for families

and to parent forums What this section is about: Who are the hard to reach parents?

2 5b) Reaching Parents of Disabled Children: How to Engage a Varied and Wide Constituency of Parents in Consultations and Participation In some areas practitioners and parent forums struggle to find active parents to respond to consultations and/or sit on committees and task groups. They are concerned that they keep calling on the same few parents for help. Sometimes parents views end up being dominated by representatives of one disability. Many parents are quite isolated. Many are exhausted just getting through the day. How can practitioners and parent forums hear the voices of those parents who never express their views publicly yet may have the most telling insights of all? Who Are the Hard to Reach Parents? In many cases they are likely to be: parents who do not speak or read English and/or are isolated parents whose children are under the radar because their children have moderate disabilities and are in mainstream settings parents who have children with mental health problems parents who move round a lot and/or are in temporary accommodation working parents parents who live in geographically isolated areas parents with low levels of literacy and/or learning disabilities parents who have become disillusioned or have disengaged from services It is possible to get responses from a representative sample of these groups and avoid tokenism by being innovative in your approach. Engaging the Interest of As Many Parents As Possible Local authorities and parents working together have found the following approaches have been successful. Working through front-line staff Almost all disabled children have at least some contact with one professional. There are many professionals working at the grass roots level who are highly trusted by Together for Disabled Children 2010 Page 2 of 5 Version 2.0 March 2010

Sometimes parents views end up being dominated by representatives of one disability. Many parents are quite isolated. Many are exhausted just getting through the day.

3 parents. Some, such as health visitors, community nurses and family support workers, know the local informal parent networks and proactively provide information to parents. They tend to know the most marginalised families. However, many of these staff are themselves not aware of consultations or participation opportunities. To address this, the local authority and parent forums need to set up a system to inform such staff about consultation opportunities (e.g. through e-bulletins and parent forum bulletins) and ask them to invite isolated parents along to focus groups and events and/or to distribute questionnaires to them (see section 6 - Securing the Future of Parent Participation). These practitioners include: community paediatricians and nursing teams early years workers such as portage workers, health visitors, pre-school teachers who work with children at home social workers in the Disabled children Team, family support workers attached to other children s teams parent partnership team special schools local voluntary organisations which work with disabled children such as Barnardo s, Mencap and the local carers centre specialist travellers workers and black and ethnic minority family support workers paediatric therapy teams such as occupational therapy, physiotherapy and speech and language therapists support workers and social workers in Child and Adolescent Mental Health Services (CAMHS) In some areas, front line practitioners are willing to attend events and focus groups with new parents to offer moral support. If they do not have the time to do this they may refer the parent to the parent forums which can also help greatly by providing personal parent contacts willing to befriend new parents at events and focus groups. Working through specific disability groups Many parents opt to join a local parents group which specialises in one disability such as autism, ADHD, Down s Syndrome, hearing impairment. These parents have valuable insights about the impact of that condition but may lack awareness of the impact of other disabilities and of the common ground shared by all parents of disabled children. Together for Disabled Children 2010 Page 3 of 5 Version 2.0 March 2010

To address this, the local authority and parent forums need to set up a system to inform such staff about consultation opportunities (e.g.

4 Some parent forums have found it effective for a member of the forum to go out and meet small local groups in children s centres or schools to tell families about the forum, why it was set up and how they can join. Parents could also be reached by holding a networking or awareness raising event for parents groups. One well tested way is to hold an information event for families of disabled children where there are information stands for each local group and stands on a variety of relevant subjects such as benefits, leisure, etc. Another popular method is holding a workshop for members of parent groups on a subject of common interest. Examples are managing sleep, challenging behaviour, transition and supporting siblings of disabled children. Any such workshop should always be free of charge, held in term time between 10am to 2pm, in an accessible venue, with good transport links and offer travel and childcare expenses. Information fairs and workshops both provide excellent opportunities to inform parents about local consultations and opportunities for participation. Holding fun events for families There are several examples of family fun events successfully attracting new families to engage with services. Such events can be relatively small and simple (art and crafts) or large with several attractions. It is ideal if it is possible to hold both large and small events as this will meet the needs of the widest audience. They should take place in school holidays and include the whole family. They are best held in well known community locations and advertised through the widest possible networks. (See section 2 - Information). Typically, such events attract many families who have no knowledge of consultations or participation. It is therefore very important that fun events are part of an overall plan to increase participation. This means capturing everyone s names and addresses as they arrive, giving them leaflets about consultation and participation and adding their names to your mailing list. The event should then be followed up with a personal invitation for new parents to the next forum meeting. Some groups have found the following ideas have worked at fun events: 1 questionnaires given to parents and children about existing or planned new services with a prize draw for questionnaires handed in that day 2 a suggestions tree: ask family members to put leaf stickers on the tree (with different coloured stickers for dad, mum, disabled child and siblings) 3 a suggestions/feedback post box so that parents comments are anonymous Together for Disabled Children 2010 Page 4 of 5 Version 2.0 March 2010

One well tested way is to hold an information event for families of disabled children where there are information stands for each local group and stands on a variety of relevant subjects such as

5 Using local media It can be highly effective to use local media to reach parents particularly when launching a new parent forum or telling people about a recent triumph. Local radio, local television and local papers are all potentially interested in local human interest stories. All such media will want a story to hook the reader and so a parent or parents will need to feel comfortable about telling their own story about why they joined the forum and what they get out of it. For a good example of successful use of media see Wiltshire How Tower Hamlets reached more parents Tower Hamlets had many parent groups but the views of some cultural groups were rarely heard. Other groups had members who could not get to meetings because of a lack of transport or childcare demands. Parents and representatives of existing groups and services decided to use their Parent Participation Phase 1 Grant to reach these families. a) They gave half the grant to parents groups to encourage their members to come to meetings and learn about participation. The groups were: parents of young disabled people who attended activities club (invited to two events), parents of young deaf children (meeting travel costs paid), a special needs educational group (play equipment bought to entice families along and then collect their views of services), Somali parents (two workshops which resulted in five Somali parents signing up to join a parent forum) and an autism group (built up a library and website to increase membership). b) They held a fun day attended by about 100 disabled children and their families where they were told about parent participation and the possibility of starting a parent forum. About 30% of the parents wanted to join and many others wanted ongoing information on a regular basis. Together for Disabled Children 2010 Page 5 of 5 Version 2.0 March 2010

All such media will want a story to hook the reader and so a parent or parents will need to feel comfortable about telling their own story about why they joined the forum and what they get out of it.

FOCUS GROUP KIT - Experiences of delivering Let s Read - - Families experiences of Let s Read -

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