The needs of and services for adults with Down syndrome
The importance of friends
- Emeritus Professor Liverpool John Moores University
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In recent years the well-being of individuals with Down syndrome has become an important issue.
Friendships and social interactions are important in everyone's life. However, there are relatively few studies on friendships for individuals with Down syndrome, particularly as they get older.
Research on quality of life in adolescents with Down syndrome found that social participation, friendships, family relationships and independence were highlighted as important by the young people who participated.
Other work has asked about loneliness, with some reporting that children with Down syndrome say that they have few friends. Other studies have found that young people do talk about friends, but friends included family and teachers, as well as friends of their own age.
At later ages investigators reported that 40% of adults with Down syndrome (mean age 50 years) said that they felt lonely
This paper will review available literature and discuss possible ways forward.
The development of DSA's well-being resources
- DSA Information Team
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The DSA has developed a suite of well-being resources. We became increasingly aware of a need to promote well-being as a result of what we were hearing via DSA's Helpline and what was being relayed to our clinical psychologist during telephone consultations. We wanted to address this need by producing appropriate resources. A clinical psychologist, a learning disability nurse and one of DSA's information officers looked at the resources available for people who have learning disabilities. The team felt there were gaps particularly in the resources available for people to address their own positive well-being. We decided to produce a resource for supporters and resources for people who have Down's syndrome (including teaching resources). Initially we talked to a number of local support groups and focus groups of people who have Down's syndrome about resource formats and key topics to be covered. We held an internal DSA working group to settle upon the end products we wished to produce and to identify broad topic areas to be covered in the supporters resource. These included: self-esteem and self-identity, emotional recognition, autonomy, risk and choice, life stresses and strains, problems and coping strategies. We developed and tested our resources with parents, supporters and people who have Down's syndrome over the period of two years. Our audio, video and printable resources were launched in 2020. All are free to download / access via DSA's website.
Effective Supported Employment Provision for People who have Down's Syndrome
- Employment Development Manager, Down's Syndrome Association
Background: In 2019-20 only 5.6% of people with a learning disability were in paid work. The Down's Syndrome Association's WorkFit program is committed to improving employment outcomes for people who have Down's syndrome based on the simple premise that if people with Down's syndrome and employers are given appropriate training and support, sustained employment can be achieved. Since its launch in 2011, 92% of candidates placed by WorkFit into permanent paid work, continue to be employed.
WorkFit has over 1,100 people who have Down's syndrome registered with the program, all at different stages of their careers and we have over 500 employers registered. New employers are continuing to register with us and we have placed people in almost twenty different industries across all three sectors. The model: We will describe the WorkFit model and how it has developed and been adapted. Lately we have pivoted the delivery formats to continue to deliver to all parties via online platforms, as required in line with the requirements of the Covid-19 safety guidelines.
WorkFit operates successfully without the need for job coaches or other third party stakeholders by using a workplace “buddy” system which significantly reduces overall costs and provides a more organic and typical career pathway for employees who have often previously had their different abilities highlighted and stigmatized.
Outcomes: independent evaluations of the DSA's WorkFit model over the last four years along with extensive feedback from stakeholders provide compelling evidence of the success of the model in delivering significant impacts for people with Down's syndrome, their families, employers and co-workers/employees and in contributing to the ambition of halving the disability employment gap. WorkFit offers an effective, scalable and evidence-based model for actively supporting people with Down's syndrome into work-related roles and encouraging them and their families to consider paid work as a realistic and feasible option.
Ability Online: Supporting adults with Down syndrome
- Head of Adult Education, Down Syndrome Ireland
- Head of Employment, Down Syndrome Ireland
Ability Online is a ten-week online course. It was developed by Down Syndrome Ireland to support adults with Down syndrome during the pandemic.
Throughout the course, students will be supported by an online Adult Education teacher and have the opportunity to interact with other adults on the course via Zoom, focusing on connecting with others, developing new friendships. The students study ten modules which cover a broad range of topics including; How to live and work with Covid 19, Mental Well Being and Resilience, Writing skills - postcards and letters, Politics and Me and Independence, Decision Making and Life Goals. The students also take part in a coffee club call each week which allows for social interaction and to build and maintain friendships.
To date, sixty-five adults have studied Ability Online with Down Syndrome Ireland. Cathal Byrne from Co. Meath was one of these students, & he captures the goals of the course: “I took part in the first Ability Online Program in October to December 2020. The course helped me to keep my skills up-to-date and to be ready when I start work. I enjoyed the experience and doing the classes through zoom worked very well. I met new people and made friends and we are going to try and keep in touch ourselves, now that my classes have finished. It was a great program to be involved in.”