Providing Community Support and Social Inclusion for Disabled Children and Young People
at the Ann Tayler Centre
on Thursday 11th June 2009
30 parents attended the group
Professionals attending
Scilla Morgan
Bev Rolfe
Pat Howley
Sheila Ramdular
Gillian Goodchild
Azhar Rahman
(+ interpreter)
Sheila Ramdular facilitated the meeting.
1. Introductions from the speakers and parents:
Sheila welcomed everyone to the group; all present introduced themselves.
2. Daniel Fitzpatrick, Play Pathfinder project worker, The Learning Trust
Following on from April's meeting on Play, Daniel explained to the meeting that the Play Pathfinder programme had funding to spend on building new & improving existing play areas on about 16 parks and estates in Hackney. They have a remit of providing disability-accessible equipment and are particularly concentrating on Wenlock Barn Estate, Hackney Downs and Stonebridge Park as model accessible play parks. Daniel and his colleague Matt Davies, are consulting parents & children over the summer. Telephone numbers for further information are: 07833 746980 and 07971 131373 (Lizzie Yauner informed the meeting that there was an event with the Primary forum for disabled children taking place today at the Geffrye museum, which was part of the play pathfinder consultation)
3. Lucy McMenemy & Kate Sullivan - Dalston Cultural Development Team
Lucy and Kate explained that their remit was to support arts opportunities in Dalston and also to increase accessibility. They have a small amount of development funding to enable them to commission artwork for Dalston Square. They wish to commissiona series of arts events involving local people. A consultation leaflet was sent out with the flyer for this HFT further leaflets were available at the meeting. They are very keen for family involvement as they wish the artworks to be accessible and representative.
4 Lizzie Yauner, Head of Inclusion Team: Robert Raby, Autism Family Intervention worker: Kirstie Goulding, Speech & Language Therapist: Miri Sisak-Cohen and Emma Rowley, Clinical Psychology service:
This section of the meeting was devoted to the topic of managing behaviour.
Lizzie Yauner introduced the topic by emphasising that parents know their children best - the professionals need information from parents on how children respond. This meeting provided very limited time, but there were particular themes and questions which could be covered, including considering how a child is feeling, what they are trying to communicate and how this might affect their behaviour. Lizzie also asked parents to consider how this "behaviour" made them, as parents feel, and asked parents to have a brief discussion on what they currently found most challenging and what they wanted help with. Feedback included:
- Helping a child to listen - and to focus
- Helping a child to express himself (without screaming!) and also understand that parents listen
- Dealing with tantrums, aggressive behaviour or violence.
- Managing time!
- Setting boundaries, including preventing over-eating.
- Building a child's self-esteem
- Developing and managing appropriate social interaction and age-appropriate behaviour
Kirstie then spoke about children with Behavioural, Emotional and Social Difficulties (BESD). These are children who frequently have underlying and unrecognised language and communication problems, and the resulting frustration may be at the root of much of their challenging behaviour. She described how these communication difficulties might be characterised by children sticking to physical games and relying on watching other people for visual cues to understand what to do.
Lizzie then discussed the importance of working in partnership with schools and of identifying one key person, such as teacher, senco, speech and language therapist, physio, who a parent can trust and communicate with easily. This person will be part of a much broader multi-disciplinary team, which works together to help a child. She also suggested using the home-school book, visiting school, ensuring attendance at reviews, target-setting meetings etc to ensure good partnership working and parent-school communication.
Robert then talked about the important of using visual aids in helping children cope with change and behaviour. He demonstrated the use of some visual timetables, using Velcro-backed symbols to help children see the sequence of events, possibly using a "motivator" card to help children get through a less attractive activity by being able to anticipate a reward - for example, "first shopping, then park". Visual cards can also be used to break down a new task or skill into its component parts. He briefly demonstrated PECS, which differs from visual timetables in that it is an interactive system in which the child actively participates. It is important to use a system which works for that child, whether it is PECS, picture symbols, photos etc.
Lizzie suggested some ideas for helping children who can communicate to let you know how they feel - for example a cartoon picture card - and further suggested other visual cues around timing, such as an egg-timer, clock etc, so that children can know how long an event is likely to last.
Miri will be running a Positive Parenting group, beginning in September, which will give parents the opportunity to explore these issues in much greater depth. This group will be aimed at children whose developmental (not chronological) age is 3-8 and is based on the "Incredible Years" programme from the USA.
5 Groupwork
Parents then split into five discussion and advice groups:
- Kirstie - communication
- Miri - tantrums and aggressive or challenging behaviour
- Emma - social skills and interaction
- Robert - use of visuals
- Lizzie - behaviour outside the home "and anything else!"
6 Report back from parent consultation/HIPS
Chris Henderson Short Breaks Development officer; Roz Grainger & Amanda Elliott, parents, HIP
Roz reminded the groups about HIP (Hackney independent forum for parents of disabled children), its origins in the Aiming High short breaks consultation and its current aims of campaigning, participating in service change and decision-making.
They outlined some particular concerns:
I. They are particularly keen to know how the Aiming High money to enhance services is to be spent for this financial year
II. people with English as a second language were struggling to access information
III. the level of service seemed unequal, with unclear eligibility criteria
IV. there was still uncertainty over this summer's playschemes.
Chris Henderson said that the result of the parent consultation would be sent out to everyone on The Key distribution list. He then provided an update on the above
- For the year 2010/11 there will be new contracts with service-providers based on the consultation. These are on-track.
- Based on parents' comment that they don't want to have an assessment in order to access services, Hackney is committing to dropping assessment as from April 2010 and is considering a clear eligibility criterion such as higher-level DLA (not yet confirmed)
- The 2009/10 money is likely to be used to provide additional summer playscheme availability. Children's Social Care is working intensively with Kids, Huddleston and Evergreen, and other play providers. Chris asked parents seeking summer provision to contact their favoured play setting to ask for a place, and the setting can then approach Social Care for funding and support.
- The rest of the 2009/10 funding will be used for pilot schemes based on the consultation.
- The proportion of funding will probably be weighted towards summer provision.
- From April 2010 LBH will be clear about the core offer, and aims to be transparent about the process.
Q How safe is the money?
A The grant is made on a Comprehensive Spending Review which plans 3 years budget.
Q What happens if one of the providers doesn't survive, if their funding goes?
A Difficult, as the Aiming High money is a top up, not core project funding
Q How do people without a social worker access play?
A Approach your favoured provider
Q How many additional places will there be?
A These are concerns for the Play Coordination Group, which aims to ensure equitable distribution of play and to liaise with CSC to identify and meet currently unmet need. But it is unlikely to make a huge difference - the money sounds like a lot, but it is not going to radically increase provision for all children.
7 Action Points
There were none at this meeting
8 Date of next meeting
The next meeting will be the Pampering Event on Thursday 9th July, 11am - 3pm. This will be at the new premises of the Carers' Centre and there will be plenty of individual and group activities, including African Dance, Tai Chi, massages, etc.
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