World Down Syndrome Congress: Day 1 Summary

Staff from our Information & Training team and WorkFit are learning lots and meeting some amazing people at the World Down Syndrome Congress in Glasgow. Here is a brief summary of the talks they attended and gave on Day 1 of the Congress.

Sex and Relationship Education for People with Down’s Syndrome – from adolescence to adulthood

Speakers: Bethany Medcalf and Christopher Osunsami – Information Officers at the Down’s Syndrome Association

Yesterday, myself and Chris spoke at the World Downs Syndrome Congress held in Glasgow. Our talk was titled ‘Sex and Relationship Education for People with Downs Syndrome – from adolescence to adulthood’. Our talk was brilliantly received; with over one hundred parents, people with Down’s syndrome and professionals from around the world in attendance.

Our talk included our successful ‘puberty and adolescence training’ for parents and professionals. We concluded by discussing our forthcoming sex and relationship training package for adults with Downs Syndrome. We described what the package will include, course topics, visual resources and support for parents and professionals who will be delivering the course material.

The course was really well received by people from around the world. To find out more about the development of this training, please feel free to call or email our helpline at

More information can also be found on the World Down Syndrome Congress website here.

Supporting family carers and people who have complex needs and/or autism

Speakers: Gillian Bird and Geraldine White – Down’s Syndrome Association

We believe we have made significant progress towards reaching out and supporting family carers and people who have complex needs and /or autism. Families have told us how they have often felt unsupported and isolated. Over a number of years, we have been speaking to, meeting with, and learning from, family carers and people with Down’s syndrome and complex needs and/or autism.

Initially, we began holding regular meetings for family carers of people with a dual diagnosis of autism spectrum condition and Down’s syndrome. We have since broadened the scope of the meetings to include family carers of people with complex needs and interested professionals. These conversations and meetings have informed the direction of our work, the support we provide for families and the development of new resources such as our ‘Listen to me’ resources.

This has enabled us to expand the range of assessments and telephone /online consultations we can offer to families and professionals. We initiated a research study, which reported in 2014, exploring rates of autism and associated behaviour problems in children with Down’s syndrome. We are supporting a research study looking at how parents and primary caregivers experience the adjustment to dual diagnosis.

We try to ensure our Journal contains articles written by family members which reflect a broad range of life experience and in June 2017, our Information Team set up a closed Facebook group for families which is proving extremely successful. Families use the group for support and to chat, share information and ask questions.

We will continue to listen, learn and to build upon our successful work to date. Our strategic aims for 2018 contain an explicit commitment to ‘increase support for complex needs groups’.


Challenging behaviour: using contingency maps as a visual support to help learners with Down’s syndrome make sense of boundaries and consequences

Speaker: Mrs Tammy Greyling – Occupational Therapist; Clothes to Good

The idea behind the contingency map is to make abstract concepts more concrete (e.g. using a picture to “explain” the word “wait”), to explain rules and behaviour expectations and to depict possible consequences for unacceptable behaviour. By using a contingency map you explain what you expect (visually), what the benefit is of acceptable behaviour and the consequence for unacceptable behaviour.

Challenging behaviour is a repeated pattern that interferes with learning or social interactions. When it occurs, there are usually two choices: do not address it and allow it to get worse, or address the problem to hopefully improve things. It is important to be very clear about what the person does when defining the behaviour.

Actions aim to make abstract things more concrete – “wait” is too vague as an instruction. Instead, try to describe for how long and use pictures to help eg. “we will work for 10 minutes and then we’ll take a break”.

Print a blank map and laminate it then use cards to stick on as required. Pictures can be taken off and used according to the situation to help the person with Down’s syndrome understand what you want from them. A useful website for contingency maps is

More information on this talk can be found here.

+BiDown Independent Life and Career Academy: How it helps youngsters with Down’s syndrome to take control of their own lives

Speaker: Miss Gün Bilgin – President; Parent/Guardian/Carer

A case study of an Independent Life and Career Programme that was established and developed over 3 years. The basic structure of the programme was discussed, highlighting the effects of a focused independence life skills training program. Demonstrated how it creates powerful and confident adults and hoped the example would motivate others to develop and apply such programs in their home countries.

56 started jobs – 89% stayed in employment and almost all are working full time.

More information on this talk can be found here.

 #DSWORKS®: Ready, Willing, and Able to Work

Speaker: Ms. Sara Hart Weir – President & CEO of National Down Syndrome Society

#DSWORKS initiative was launched 2 years ago to raise awareness of hiring people with Down’s syndrome. It evolved quickly and now it is a cornerstone of NDSS work.

There is training and there are resources to support employees and employers, such as interviews, coaching, where/what are the jobs etc. Importance of building employer partnerships so they can grow awareness, giving people the chance to have a career, not just a job.

Ongoing support and regular discussions about what is and isn’t working so adjustments and improvements can be made. The need to talk to all types of businesses and employers about barriers, best practice etc.

Want to help self-advocates to start their own businesses. An example:

  • John Crazy Socks – John Cronin – helped by his dad for almost 2 years and have made $2million. Half of the staff they employ have learning disabilities. John has spoken in Washington to influence Congress to support self-advocates in employment.

Paid above minimum wage. A mixture of permanent work, internships and work experience.

More information on this talk can be found here.

A great first day, we will update you with Day 2 tomorrow! 

To see the full programme of events, please visit