Providing Community Support and Social Inclusion for Disabled Children and Young People
at the Ann Tayler Centre
on Thursday 1st October 2009
"What makes families stronger?"
19 parents attended the group
Professionals attending
Sheila Ramdular
Noni Khumalo
Gillian Goodchild
Aysegul Dirik
Azhar Rahman
Robert Raby
Pat Howley
Kunbi Jones
Claire Harding from Contact A Family
Sheila Ramdular facilitated the meeting.
1. Introductions from the speakers and parents:
Sheila welcomed everyone to the group and all present introduced themselves.
2. Claire Harding: Contact a Family
Claire introduced herself as CAF's Parent Participation Advisor for London. Contact a Family's primary purposes are
a. putting parents of disabled children in touch with other parents, especially in the case of children with rare conditions
b. provision of a helpline, with interpreters if needed, for advice on education, welfare etc.
but Claire's particular role is as part of the Together for Disabled Children partnership's remit to support the setting up of parent forums in London. Every London borough is developing a parent forum for disabled children's services; there are currently two of these parent forums in Hackney - Hackney Families Together and HIP, which work closely together.
Local authorities and PCTs (health) are currently being monitored on how they consult with and listen to parents, so now is a very good time to become involved and get your voices heard about what services would help.
Claire asked parents to work in groups of 2-3 to think about a specific question
What do you do which helps strengthen your family?
Items fed back to the main group included:
- being together with extended family
- having a short break carer
- absent fathers being actively involved
- good family networking
- becoming an advocate (including feeling that parents can make a difference for disabled people in society, sitting together and discussing and feeling that, as parents, they are "do-ers")
- spending quality time with all the children
- going out and about with the children
- the love I receive from my disabled child and the help from professionals
- Specific programmes, people and organisations including EarlyBird Plus (an NAS programme to help young children with autistic spectrum disorders), the Millfields parent support group and Jane Thomas, Hackney Family Backup's , Kunbi Jones and the educational psychology service.
Claire pointed out the importance of a parent forum in getting all this information heard!
She then set a second question:
What (information and knowledge) would make your life easier?
- To know what services there are. There is no systematic dissemination of information, it's all a bit accidental
- Finding out about the kind of services available
- Skilled and trained staff to work with the children
- Flexible and parent-friendly meetings and ways of delivering service.
- Don't use jargon!
- Networks for all disabilities as some are overlooked
- Knowledge of your rights and entitlements.
- Knowledge of how to manage challenging behaviour
- Practical support, not just advice - eg help with completing DLA application, not just advising me to apply!
- Raising the awareness of some front-line professionals about disability
3. Election of parent representatives
Roz passed on Vesna's experience of representing parents at the Short Breaks Project Board meeting. Chris Henderson had met with her beforehand to explain the format and help her to prepare for the meeting, and Vesna felt that the meeting was very friendly, with everyone present making an effort to include parent participation and recognise parents as professional and knowledgeable about their children's needs. Membership of the board comprises Toni (Head of children's services at the Ark) Chris, plus officers fromhealth, education and social care. She explained that the role of the parent representative is to ensure that the service is tailored to meet the children's needs and is delivered in a timely fashion. The parent(s) elected will need to be able to take the broader view and represent all disabled children, not just their own. Meetings are currently held monthly and interpreting and childcare costs will be met for parents who need these. Parent representatives will to be aware that in addition to attending the meetings, they will need to have time to prepare for these and to feed back to HIP and/or HFT
The meeting went on to elect two parents to join the Short Breaks board. There was some interest in taking on the role, but a nervousness about the amount of commitment needed. However, there are other projects coming soon with opportunities for parent participation, such as a Transitions group and a Key opt-out scheme, if parents are uncertain at this stage.
Result of the election was:
Vesna Glavas - elected in absentia
Elizabeth Akinyene and Saladu Abdi-Musse - to job-share
Other parents expressed interest in coming to observe - Sylvia and Pallzy in particular.
4. Grapevine
Kunbi asked for parents interested in being involved in the opt-out disability register. The register will be split into basic information and with a pool of people for consultation about services.
5. Any other business
Anyone wanting to know more about parent participation should give their details to Roz - especially email contacts for fast response.
Sheila reminded parents about HFBU's family club - now renamed Leaps and Bounds - next meeting on Saturday 10th October
6. Date of next meeting
Thursday 5th November, the theme is Transition.
HFBU never make direct appeals to the public for funding. If you receive an e-mail requesting
financial assistance that you think might be from us please contact us immediately.