15 parents attended the group

Professionals attending
Scilla Morgan
Bev Rolfe
Kunbi Jones
Sheila Ramdular
Gillian Goodchild
Deborah Walsh
Azhar Rahman
(+ 3 interpreters)

Sheila Ramdular facilitated the first part of the meeting, Roz, Vesna & Amanda (parent consultants) the second.

1. Greetings:
Sheila welcomed everyone to the group, particularly the new parents from the Somali & Congolese communities, and explained the format.

2. Initial review of Hackney Families Together
Sheila split the parents into three groups to discuss the current format and content of HFT, in particular concentrating on three questions

1. What do you like about the group?
2. What could make it better? (eg venue, could parents be the 'meeters and greeters' to make it more welcoming, would new people like (parent mentors, etc)
3. What are the hot topics for the next few meetings? What are the issues which most concern you?

• That it exists!
• The opportunity to learn - range of topics, we learn about important things
• Its uniqueness
• Chance to meet other parents
  • from lots of different communities
  • solidarity and shared experiences and ideas
  • whose children have different disabilities
• That there's follow up on actions after meetings
• Information leaflets
• Phone calls to remind us of meetings
• Venue (fresh, bright, like to see children playing)
• Convenience of time
• 'me' time - meeting is about MY issues
• Help to understand, accept/come to terms with disabilities - 'enabled me to move on'
• The food!

• More publicity
• More professional help for parents to support each other, especially with growing children
• More parent-lead sessions - parents contributing experience, expertise and support
• Signposting to other services
• Behaviour support for challenging behaviour
• An information surgery
• Professionals not using jargon! Some parents feel uncomfortable saying they don't understand
• Parent/professional divide - parents are expert/knowledgable about their own kids
• Less talking 'at' more dialogue
• Opportunity to talk to the speakers after the presentation
• Explanation of how systems work, who to ask, who to complain to etc.
• Feedback and progress reports from professionals about previous sessions
• Practical communication strategies

• Challenging behaviour
• Housing
• Special educational needs - educational provision & how to choose
• Information sharing forum
• Parent-led activities
• Occupational therapy and equipment
• Welfare benefits advice (1:1 surgery?)
• Life/independence skills
• Holiday activities, after school activities and holidays
• Weekend activities for children
• Advice on public transport entitlements
• Sex education
• How to involve fathers
• Children's activities (leisure?)
• Sources of additional funding
• Information about training courses
• Counselling and emotional support for parents
• Transitions nursery/primary, primary/secondary, school/post school

• Continuing consultation about short breaks (the "Aiming High" money & how it is spent)
• Ongoing voice to influence policy and services, with access to/seat on decision-making boards
• Platform for parents to get together
• Parents as a group are stronger than individually - consultants feel the process is empowering

• No childcare for meeting on 20th is a big issue as children will not be at school (however, there is currently no budget)
• The lack of interpreters would also be a barrier
• General support for aims and objectives & mission statement
• A collective voice is important, as is sharing knowledge and skills. The strength of a group is reliant on the loudness of its voice so it would need to be high profile.
• There is a need for all practitioners to have disability equality training
• There will still be a need to have some professionals around for specialist advice and also practical support such as crèche support.
• Everyone has individual needs, so there would need to be group priorities
• There might need to be a sub-group for parents of children with severe/complex disabilities
• The issues to be covered are similar to HFT
• See a parent forum as complementing not competing with HFT
• Being informed, within the 'context of personal stories' would help parents to feel able to participate
• Leaflets are very useful even if they aren't translated.
• Information could be included in the Turkish free papers.
• We would like the opportunity to talk about everyday things, which are so much more problematic because of disabilities, eg holidays and travel.
• HFT meeting once a month is not enough
• Parent forum a good idea in principle
• Like the idea of no-one telling us what to do, but we would need to take responsibility for setting our own agenda and doing all the work to achieve it!
• Like the idea of contractual support from professionals
• Would like to expand remit to include parents of adults <25
• Policy-makers might not take us seriously
• Sustainability could be a problem - how do we get people to come along?
• We need to understand the structures of decision-making (could someone be commissioned to undertake to do this?)
• Important in recognising, growing and developing parents' skills. Very empowering.