From the DSA – November 2018

There’s been a lot happening at the DSA in the last couple of months and we wanted to highlight a couple of areas in particular.

Our Training and Information team have been busy!

  • We’ve run a Tell It Right® study day with the Swindon group;
  • Schools training and support in Wales as well as online training for schools in England;
  • a regional focus meeting and workshop on supporting behaviour in the West Midlands as well as supporting behaviour workshops in Lewisham and Swindon;
  • School visits and training on supporting early development with the Cheshire group and supporting adults training in Stockport;
  • Speech and language assessments for children;
  • a day’s training on ageing and Down’s syndrome with a support group in Darlington;
  • training sessions with the South Manchester Down’s Syndrome Support Group on accessing the curriculum and mathematics;
  • adult needs assessments;
  • support for legal cases;
  • specialist advice to help people get the right support for their adult children; as well
  • as speaking with people on our busy Helpline and research application support services.

At the end of the month Julian (DSA Services Development Manager), Geraldine (Chartered Clinical Psychologist) and Jane (Learning Disability Nurse & Mindfulness teacher) met with families in West Midlands at one of our regular meetings for families who have children with complex needs and/or autism. Beth and Chris are working with DSNE on puberty and adolescence; and we ran one of our our very popular workshops on supporting social development and positive behaviour.

We published 19 new online resources in the Health Series with support from the DSMIG.

Our new relationships and sex education resources and training are now complete and will be going to print shortly.

Policy & Campaigning

We have been preparing the DSA It’s My Life survey report and campaign to get better assessments and support for adults. We will be launching the report in December.

We attended the DSMIG steering group meeting and DSMIG conference and participated in the Liverpool University advisory group on research into vision (cornea) assessments.

Our team has been working with Public Health Wales on antenatal information and evaluation; and with Dementia Strategy in Wales, Wales government ministers and support groups in Wales.

We are delighted that the Designer Genes and DSA survey is out for parents of young children to complete. We are very worried about reduced services pre-school and need as much evidence as possible about the support families are receiving in these early years.

Our Services Director, Gillian Bird, was interviewed on BBC Radio Berkshire and BBC South Today on the problems experienced by local families to access speech and language therapy for their school-age children with Down’s syndrome.

It was an honour to represent the DSA alongside the DSActive team at the Better Health Better Lives event in Devon. Attended by many people who have Down’s syndrome as well as other learning disabilities it was fantastic to meet everyone and talk about what we do.

Some of you may know that we have put forward a Helpline proposal to develop an NHS ante-natal screening and diagnosis support helpline for expectant couples. We spoke about the Helpline proposal in July at the World Down Syndrome Congress. We believe that any offer of screening for Down’s syndrome must be supported by a regulated, independent helpline service; we need to be certain that couples are given the right information at the right time. To support the proposal we have developed a comprehensive training programme to ensure that helpline staff have the necessary skills for this work and are able to offer high quality information about the lives of people who have Down’s syndrome and their families. We will keep everyone informed about developments towards securing this service. Our other ‘asks’ are listed on the Tell it Right ® Start it Right campaign page.

Having a Voice

Our monthly Having a Voice meeting was a bit of a highlight this month. Our London group were joined by Lee Ryan, from band Blue, Eastenders and Strictly 2019. The guys in Devon didn’t miss out completely as he said hello to them via Skype.

We are looking to expand these groups to North and South Wales and with support groups in 2019…see the next issue of the Journal for more details (Spring/Summer 2019).

The WorkFit team have had a busy October and November.

  • 23 candidates have been placed across England and Wales, with employers including XPO, Transport For Greater Manchester, Devon and Cornwall Police, Greenhill NHS care, Co-op, Hampshire Police, Yeovil Golf Club.
  • The team have delivered 23 employer training sessions

Wiltshire Police received the award for Best Employer Practice at the British Association of Supported Employment (BASE) Awards 2018.

We’ve launched an Employment Project Volunteer pilot launched in the North of England where we are being supported by volunteers to raise the profile of WorkFit among business networks and employer organisations.

We held WorkFit conferences in the North West, Yorks & Humber and North areas. All very well attended with candidates and employers sharing their experiences and stakeholders and professionals enjoyed celebrating their success.

We’re very pleased to announce that Alison Thwaite has been confirmed as Employment Development Manager for the WorkFit programme on a permanent basis.

There are some exciting changes coming to the DSActive programme.

So far, there are 69 DSActive sessions spread out across England and Wales, with over 800 people with Down’s syndrome involved in those sessions. So far 3 sports offer specific sessions for people with Down’s syndrome: football, tennis and athletics. Next year we will be launching 3 new sports and many new sessions across the country.

We are also looking in to providing walking and cycling groups for those who do not enjoy traditional sports but want to increase their activity levels. We are still in the early stages of these groups, but our first pilot will be launched in Cumbria in the coming weeks and hopefully we will be able to roll this out across the country next year.

All clubs offering a DSActive sessions receive training from a member of the DSActive team to ensure that the session is suitable for the varying needs of the participants. In the New Year we will be rolling out a new scheme that will offer this workshop to many different sports. We will be working with the National Governing Bodies of those sports to run our workshop as a course to upskill their coaches. The overall aim is that anyone with Down’s syndrome will have the ability to play any sport they want, even if that sport doesn’t offer impairment specific session, and the coach will be able to access our training workshop to make sure that the participant is getting the best coaching possible.

The team are also busying supporting people with Down’s syndrome to achieve coaching qualifications. The DSActive team support the tutors to ensure the information is presented and taught in an optimal way for the learning profile typically associated with those with Down’s syndrome. The course content stays exactly the same, meaning that once the participants have passed they can become paid coaches in their chosen sports. So far over 20 people have been through this scheme with many more to come.

We also have a few extra projects which are being launched in the new year. One of the DSActive team has been focusing on the Leisure and Fitness industry. Her research will look at the barriers to using these facilities, and she will develop a workshop to be delivered to those within the industry to improve the provision. This year we have also launched our nutrition campaign, we have developed factsheets for people with Down’s syndrome and their parents/support workers, which provide information on what is a healthy diet and simple positive changes we can all make. We are currently redesigning our website but once this is finished they will be free to download or you can email me and I will send them on.


We are only able to deliver this work because we have a dedicated team of staff who work tirelessly to improve life chances for children and adults who have Down’s syndrome and their families.

We’re also incredibly grateful to all our members and supporters…thank you for your continued support.