Sarah Larkin (SL), Aidan Larkin, Julie Duff (JD), Rachael Rider (RR), Amanda Glennon (AG), Phil Hilditch (PH), Nanette Mellor (NM), Rebecca Marshal-Clark (RMC). Laura Dempsey (LD), Sue Tranter (ST)
To be read alongside the presentation (see foot of post).
Introduction from NM with inspiration notes about people with DS from around the world. The amazing thing is that they had the opportunity to do those inspirational things. We are here to give that opportunity.
Have had a great year but still building.
JD presented new focus, see slides for what we have done, and what’s new.
Over 50 respondents to hopes and fears questionnaire over 20 are new to us.
5-6 families have used solicitors.
Raised £18,000 on evening of charity dinner.
Watched video for Weaver School about support that they have received.
Where we started by SL and AG
Report on the 10 birthday by Aidan Larkin
RR went through finances on slides, helped by Aidan and AG
Staff cost largest due to recruitment of marketing manager. Largest donation form A&M Wealth Management.
To spend money we are looking for an education advocate who would work with schools and parents, e.g. training Makaton, S&L. Discussed where there was a need for it and how it would be funded. The charity needs to spend to be able to support growing and aging population.
In order to know where to spend the money we have put out a questionnaire. JD went through the highlights, see slides.
Rebecca talked about how valuable having a solicitor on hand is.
Discussed holiday provision and the benefits of travel away and weekend clubs. Friend group etc and dance groups.
Looking for online safety courses. Police are coming in to deliver. Lyme Safety central could be looked at.
DSA will come in to talk about benefits.
For the adult age group, we discuss work. The Russet school are running a supported internship starting in Sept. Could look at it. WorkFit form DSA are also coming up. Bren project also looks at employment in the Chester area.
JD talked about Morgan foundation grant to employ an education advocate.
MP Mike Amesbury has been in and will help us to… talk to health professionals, about raising awareness and using positive language. Language can be very outdated and they are often looking at the more complex health problems than the person. Clinical Commissioning Groups will decide on how much money to put into S&L. Raising health concerns that are not being diagnosed as they are making assumptions about cognitive ability.
JD fundraising, aim 20-30 thousand biscuits next year. Each cost 2-3p and recommend donation of 50p each, often get more as they are sold around an event. To other regions we are selling boxes for a fixed price.
PH “Doing a marvellous job.”
Football still growing
Looked at 6 month calendar which will be sent to all new families.
None of the areas educational, health, MP do not match up.
RMC said would like to know in advance as they get booked up. Liked things on Facebook.
Sibling stuff, bit old but have activities for older siblings like bowling and Zoo. Merlin magic wand visit to sea life centre. Zoo with room for people so siblings can build friends.