Minutes of Sheffield Down Syndrome Support Group AGM – July 19th 2010
In attendance : Rob Peck (Secretary), Tania Birley, Richard Fletcher, Emma Walker, Janet Harrower, Neil Harrower, Clare Peck
Apologies : Norma and Phil Morgan, Sharon Taylor, Andrew Keywood (Treasurer), Dave and Gill Steer, Mandy Packham.
Matters arising from minutes July 16th 2009
1: Events
The Megacentre event in September 2009 and the Christmas party were very successful
It was recognised that with more people in <placew:ston>Sheffield being interested in such events it was important to think how we could build on these successes and also diversify for other age groups. ( see below ).
2: Parents forum
Clare reported back that the Sheffield Parent Carer Forum is continuing to be actively involved in development of the LDD strategy , Inclusive learning strategy and many other issues relevant for any child with a disability. They now have about 350 members and welcome any new comers; if we are to represent as best as we are able, it is essential that we have a broad membership. Richard highlighted concerns that the SPCF needed to be wary about claiming to be representative when the parents involved tended to represent only a minority of children. Clare said that this was high up on the agenda and alot of effort has and is being made to include parents from different backgrounds/and representing varied disabilities. It was not perfect but there is a real opportunity in Sheffield to influence change and it has been felt more important to be in conversation with the LA than not. See website http://www.sheffieldparentcarerforum.org.uk/
There will be another (yes another) consultation questionnaire coming our way via the schools to ask about opinions on inclusion(to be sent to all families with and without a child with disability/SENCOs/ headteachers. Please find time to fill in.
3: Short breaks
This is name for respite care now. A lot of work is being done to try and make those services that are available more fit for purpose and available in a more equitable way. Long way to go.
4: Babies first group
Continuing successfully, need dates for autumn term
5: New parent information
We have supplied the DSA booklets for new parents via Janet Barkers team and these are now being handed out to new parents. Often a variety of people involved in the information giving process eg midwife or doctor. We have not “formalised” the local involvement. Neil, Richard and possibly one or 2 others will try to arrange a meet / chat with interested individuals at the Jessops to try and improve our local involvement to try and help new parents, if wished. (also think about antenatal diagnosis and information giving)
It would be helpful to have any recent experiences which may highlight good practice or areas where things could have been done better.
6: Finance
The local group is maintaining a running total of between £750 and £1,500 as events are paid for and new donations come in, which is about the right position.
We may need to try and fundraise again if we plan more events, but there was optimism that this was quite feasible.
7. Roles
The normal terms of “office” for the group run 3 years, and should be due for change in Spring 2011, but Sharon and Andrew had both expressed a wish to pass them on sooner if possible.
By mutual consent and arm-twisting it was agreed that Tania would take on Chairperson, Neil – Treasurer, and Robert continue as secretary.
Richard, who has extensive IT skills, offered to help organise some day events, look at the web-site, get involved in fund raising and other essential areas where we have been looking for local expertise; we all said YES!
8. Forthcoming events
Another Megacentre afternoon is planned, September 25th.
We will also try and have some areas where people can just chat, and also offer suggestions as to what they would like to see being organised in the future eg trips to the Butterfly centre or cinema.
Christmas party: same venue, Sunday December 13th, 2-5pm (approx).
There was even the suggestion that we could try and take on an allotment! Where kids (of all ages?) could dig, plant, dig, drink and eat large numbers of chocolate biscuits. It’s the kind of half-crazy idea that seemed more interesting every time we thought about it.
We believe there is quite a long waiting list, but we will really look into this or if anybody has useful information or knowledge, do let us know.
We are also very aware that in the past our efforts have been concentrated on younger children, but as those of us who have been involved for a while are appreciating, we have not done as much for teenagers and young adults.
9: other stuff
A general reminder that if you have friends or acquaintances with or caring for a person (child or adult) with Down syndrome, who don’t seem to know about the local group, tell them. Nobody has to get “involved” unless they want to, but just hearing about what’s going on can be useful and perhaps encourage them.
Of course, anybody who wants to help in any way at all, is always welcome to come along or just phone or e-mail.
Remember to try and let me know if you change address, email etc.
Email is our preferred method as it’s quicker and certainly cheaper.
We all left the meeting after a couple of hours of chatting and laughter, feeling really enthused about the future. We hope you will be too.
Rob.
Minutes of meeting of Sheffield Down’s Syndrome Support Group -September 8th 2009.
Present :- Robert Peck (Secretary), Andrew Keywood (Treasurer), Tania Birley, Neil Harrower, Dave Steer, Clare Peck.
Apologies :- Sharon and Tracey.
N.B. some updates are included here as there were a number of meetings taking place later that week before these minutes were typed.
Matters arising.
1. Interim parents forum – this is for ALL children with learning disabilities.
Janet has been selected as secretary.
Approximately 170 questionnaires have been returned. Clare will be presenting a summary at the Parent Carers Conference at the Megacentre meeting on Thursday October 15th (10am – 3pm).
Please remember that all parents are invited to this meeting where there will be a chance to talk about issues such as funding, transport, short breaks and specialist provision.
(N.B. this is not our autumn get-together, see below).
2. Short breaks.
There is government money attached to Aiming High for Disabled Children and over the next 2 years Sheffield will get nearly £3M to spend on short breaks. Clare attended a meeting with Chris Easton (and others) who is now heading up this project. More info to follow as we get it.
3. Jessops new information.
Neil had been in touch with Julia Barker, the social worker with responsibility for this, who was happy to include in the information pack any suitable information we would like to provide.
There was a good looking pamphlet from the national D.S.A. which we can obtain – action Rob (I have sent away for 50 copies initially)
Further discussion took place about a leaflet with local contacts and how to develop this. Action Clare.
4. Specialist teaching support in schools.
Janet and Amanda met Mary Collins (Head of Educational Psychology, Sheffield Educational Psychology Service), who listened with interest to their discussion, but in the end said there wasn’t any money. Obviously, we need to keep chipping away at this one.
5. Events.
Congratulations to Janet for sorting out our next event, the get-together at the Megacentre, on Saturday 26th September. Janet was meeting with Tania and Rhona to sort more play and entertainment.
There was a good-natured and hearty discussion relating to the costs of this sort of event nowadays, and the need for us to look forward to raise funds for future events.
New stuff.
Christmas party – Sunday December 13th 2-5pm, Trinity United Reform Church, Hunters Bar (same venue as last year).
Next meeting – probably in the New Year.
