Downright Excellent

Project Co-ordinator to set up and run 5-9s group

Building on success of our 0-4s group, we want to start a group for 5-9s with Downs Syndrome (DS) providing Speech and Language Therapy (SLT), Occupational Therapy(OT), Numeracy, Memory enhancement plus social experiences. Trustees are parents of disabled children and have reached point where need support of an employee in order to expand our excellent group. Plan is to then set up for 10-14s and so-on.

history Campaign has now closed

It ran from 9:09 PM, 12 June 2015 to 2:30 PM, 15 November 2016

Registered Charity in England and Wales (1120863)





  • Health/WellbeingHealth/Wellbeing


  • Children (3-18)Children (3-18)



The grant is sought to set up a new group for children with DS aged 5-9 and their families once a week in term-time (after school or Saturdays). The fund will be used for the post of Project Co-ordinator (PC). Their duties will include: organising initial surveys (Formal Needs Analysis), fundraising, organising room and therapist hire, publicity, feedback to funders in association with the Trustees, and also some administration support for the 0-4s group. Our need to set up a separate group for 5-9 year olds is borne out of 3 specific issues: 1. Parents have communicated to us that their older children need a social experience with others like themselves, as nowadays they are mostly in mainstream primary schools and, no matter how kind people are, they are unlikely to be invited back to someone’s house to play. They specified a large room for play with smaller rooms where the SLT and OT take age-appropriate groups in turn for their lessons. In response to requests, we anticipate that the times for the group will either be after school, on a Saturday morning, or even both. 2. The desire to address the problem that the post 4s, if suddenly unable to access the type of help they have become comfortable with, are left without a reliable structure. Our experience of the Speech and Language Therapy (SLT) provided by local authorities is extremely patchy. Private SLT costs upwards of £70 per hour. Our service provides the 0-4s with an Occupational Therapist (OT) trained in sensory processing issues which can make learning accessible to some children previously unable to benefit from our teaching – for example if they are ‘sensory seekers’ they will be unable to settle and may be seen as disruptive. 3. The 5-9 aged group is seen as a natural progression for the organisation, showing growth of the service and organisation. We provide a Stay and Play for the 0-4s group which functions as an informal parents support group at the same time. We provide a library of publications for parents to borrow and return. This would also be rolled out to the new group.There is a lot of extra work and stress involved in being a family member of a disabled child who may well have additional medical problems e.g. hole in heart, problems with hearing, sight, frequent infections requiring hospitalisation etc. There is the stress of dealing with society’s attitudes, and the constant battle to access adequate services taken for granted by others. Further information was sourced from Gillian Bird, Director of Education and Information Services at DownsEd, who mentioned that as the children get older, huge differences in ability between them become apparent. The PC will ask her for advice as to the methods they have found the best for dealing with this issue so that all children can access a group teaching experience which is so important for turn-taking and other building blocks of conversation. Practical results: Our current group attracts nearly 30 children age 0-4 and we would hope to have a similar uptake in the 5-9 age group. It might take a couple of terms to build up the attendance, although perhaps not so long if enough parents were aware of the group via the PC’s initial consultations. The children’s language will improve thanks to the regular SLT and this will have a knock-on effect on their behaviour (less frustrated) and self-confidence. They will perform better at school. The children will be able to form friendships with others similar to them and therefore feel less lonely and more included. Siblings will have support from our play workers and feel less excluded by the constant round of appointments and attention given to the other child. Although we provide support to siblings at present this is an area we would like very much to expand as the difficulties these children face is often forgotten. The PC could, time allowing, organise some events or training for this group of children who face their own difficulties, often alone. Parents should feel less isolated being able to meet others and share tips, and become better informed through contact with our expert staff, and by borrowing publications from our lending library. Other groups will be inspired by our success to emulate our teaching programme, which is so badly needed by these children, in other parts of the country. We will support them with advice based on our experiences. Professionals in health and education attending and observing will greatly increase their knowledge about children with DS and how they learn. Number of people to benefit: 25 children, 50 parents/ carers, 15 siblings and in addition 45 Interested professionals in health and education, who visit our group to observe and learn. Also other local groups who would like to emulate our ambitious programme, say 12 people over a year. Volunteers: 2 . Total: 149 Cost effective: Project co-ordinators employment will enable doubling of services currently provided and natural expansion of a successful group. DOWNRIGHT EXCELLENT: BUDGET PROJECT CO-ORDINATOR 2008-9 Salary (NJC SCP 37 £29,728 plus £3,179 London weighting) x3 days pro rata £19,744 Employers National Insurance x 12.8% £2527 Expenses of working from own home- electricity gas water amend home insurance policy, health and safety and risk assessment, business rates £1400 Activity costs: publicity costs, room hire, refreshments, travel expenses for consultation participants £1600 Office expenses: stationary, photocopying, postage, telephone/fax, printing surveys, mail outs £2000 Equipment: PC, printer/photocopier, desk, chair £1500 Employers liability insurance (new for this project) £200 Public liability insurance: already provided free by The Downs Syndrome Association £0 Recruitment: advertising, interview room hire, management committee expenses £2750 Staff development (training) £500 CRB check £100 Travel £150 TOTAL £32,471