Supporting Individuals with Down Syndrome Across the Lifespan: A Parent-Led, Expert guided, Community-Based Model from Down Syndrome Tipperary
- Susanna Stokes (Down Syndrome Ireland)
Correspondence: Findsuzys@hotmail.com
Down Syndrome Tipperary is a parent-led organisation supporting individuals with Down syndrome across North and South Tipperary, Ireland (105 Members and their families). Our model integrates clinical, educational, social, recreational and creative supports from early childhood through adulthood. This symposium describes how a parent-driven structure, combined with professional expertise, creates flexible, needs-based services that promote lifelong learning, meaningful participation and personal development both within families and in the wider community.
Following an introduction to our services we will present four linked sessions. The first describes our clinic-led services, including speech and language therapy, occupational therapy, and educational tutoring. These supports address the significant gaps families often face in accessing timely, specialised interventions. It also addresses how we weave therapy into many aspects of our services in Down Syndrome Tipperary and how we timetable activities to ease parents travel burden, to build parent-parent support and to facilitate social connections.
The second presentation outlines our adult services, including social groups, life-skills learning, an advisory counsel, partnership with local adult education courses, work experience and our Pop-Up Café — a vocationally oriented initiative providing adults with Down syndrome opportunities for real-world communication, teamwork, responsibility and independence. As well as an overview from our housing committee who are seeking to address independent living for our adult members.
The third presentation focuses on the creative arts, and how our programmes are enhancing communication, confidence, sensory regulation and social connection. Our creative arts include drama, dance, animation, music, an art exhibition and our yearly theatre performance. This session will be rich with images and video presentations and presented by a group of our adult members.
The fourth presentation highlights our recreation and social participation model, including sports, teen groups, seasonal camps, family events and inclusion-driven social outings. These experiences strengthen friendships, support mental and physical wellbeing and reinforce a strong sense of community.
Together, these four components demonstrate how a volunteer-led, grassroots organisation can deliver a holistic system of lifelong supports. This symposium may inform practice for community organisations, therapists, educators, and family-led groups seeking to design or expand services for people with Down syndrome.
Clinic-Led Services within a Parent-Driven Model of Support for Individuals with Down Syndrome
- Susanna Stokes
Correspondence: Findsuzys@hotmail.com
Families of children with Down syndrome often encounter significant barriers in accessing timely, specialised clinical supports, including long waiting lists, fragmented services, and limited condition-specific expertise. This presentation describes the clinic-led services of Down Syndrome Tipperary, a parent-driven, community-based organisation providing integrated speech and language therapy, occupational therapy, and educational tutoring across North and South Tipperary, Ireland.
The session outlines how clinical services are embedded within a broader lifespan model of support, spanning early childhood through adulthood. Therapy provision is informed by evidence-based practice and shaped by lived family experience, enabling flexible, needs-based intervention planning that responds to real-world challenges faced by families. The presentation addresses how this model helps bridge common gaps in statutory services, including access to early intervention, continuity of therapy beyond early childhood, and coordinated multidisciplinary input.
A key focus is the intentional integration of clinical goals into wider organisational programmes. Key to our success is consistency and training of SNA support staff that work with our members in both therapeutic and non therapeutic interventions.
Throughout the age span group Therapy has been designed to target functional goals and reduces reliance on traditional table top therapy sessions and promotes independence, confidence, and self-advocacy.
The presentation also highlights service design strategies that reduce family burden and enhance engagement, including coordinated timetabling of therapies and activities to minimise travel demands, facilitate parent-to-parent support, and strengthen social connections among families. Outcomes include improved attendance, greater carryover of therapeutic strategies into home and community environments, and increased family satisfaction.
This clinic-led model demonstrates how parent-driven organisations, in partnership with skilled professionals, can deliver accessible, integrated, and sustainable clinical supports for individuals with Down syndrome.
Adult Services Supporting Independence, Participation and Lifelong Learning
- Aine Knightley
Correspondence: Aineknightly@downsyndrome.ie
This presentation outlines the adult services of Down Syndrome Tipperary, designed to support independence, meaningful participation, and lifelong learning for adults with Down syndrome. Rooted in a parent-driven, community-based model, these services respond to the limited availability of structured, inclusive adult supports in many local contexts.
The session provides an overview of a range of adult-focused initiatives, including social groups, life-skills programmes, an adult advisory council, partnerships with local adult education providers, supported work experience, and the organisation’s Pop-Up Café. These programmes prioritise functional communication, teamwork, responsibility, and self-confidence through real-world, community-based experiences.
Particular attention is given to the Pop-Up Café as a vocationally oriented initiative that provides adults with Down syndrome opportunities to practise communication, problem-solving, and social interaction in authentic settings. The presentation also highlights the role of adult voice and leadership through the advisory council, supporting self-advocacy and shared decision-making within the organisation.
In addition, the session will introduce the work of the housing committee, which is exploring pathways toward independent and supported living for adult members. This work reflects a long-term commitment to planning across the lifespan and responding proactively to future needs.
Together, these adult services demonstrate how a grassroots organisation can move beyond social inclusion alone to create structured opportunities for skill development, autonomy, and community contribution. The presentation offers practical insights for community organisations, educators, and service providers seeking to design meaningful adult supports for people with Down syndrome.
Creative Arts as a Pathway to Communication, Confidence and Connection
- Orlaith Maher
Correspondence: Orlaithmaher@downsyndrome.ie
Creative arts play a central role within the Down Syndrome Tipperary model, supporting communication, emotional expression, sensory regulation, confidence, and social connection across the lifespan. This presentation focuses on how creative programmes are intentionally designed to enhance participation and wellbeing for individuals with Down syndrome.
The session will outline a range of creative initiatives, including drama, dance, music, animation, visual art, an annual art exhibition, and a yearly theatre performance. These programmes provide structured yet flexible environments in which participants can develop expressive communication, social interaction, and self-confidence while working collaboratively with peers.
The presentation emphasises the integration of speech and language, sensory, and social goals within creative contexts, allowing participants to practise skills in motivating, meaningful ways. Creative activities support emotional regulation, turn-taking, shared attention, and narrative expression, while also fostering joy, identity, and belonging.
This session will be presented in part by adult members of Down Syndrome Tipperary and will include images and short video clips demonstrating the impact of creative engagement on communication and participation. The inclusion of participant voice highlights the value of co-creation and authentic representation within inclusive arts practice.
This presentation demonstrates how creative arts can move beyond enrichment to become a core component of holistic support, offering transferable skills that extend into social, educational, and vocational settings. It will be of interest to therapists, educators, artists, and community organisations seeking inclusive, strengths-based approaches to supporting people with Down syndrome.
Recreation and Social Participation as Foundations for Wellbeing and Community
- Cora Horgan
Correspondence: Tippcommitee@downsyndrome.ie
This presentation highlights the recreation and social participation model developed by Down Syndrome Tipperary, designed to support friendships, wellbeing, and community inclusion for individuals with Down syndrome and their families. These programmes recognise social connection and participation as essential components of lifelong development.
The session outlines a wide range of initiatives, including sports programmes, teen and youth groups, seasonal camps, family events, and inclusion-focused social outings. Activities are structured to support communication, cooperation, emotional regulation, and confidence, while also creating opportunities for enjoyment and peer connection.
A key feature of this model is its emphasis on continuity and progression across age groups, ensuring that social opportunities evolve alongside participants’ interests and developmental needs. Programmes are designed to be accessible, welcoming, and responsive, reducing barriers to participation for both individuals and families.
The presentation also explores the wider impact of these initiatives on family wellbeing and community building. Regular shared activities foster strong relationships among families, promote peer support, and strengthen a collective sense of belonging. Recreational programmes are closely aligned with the organisation’s clinical, creative, and educational supports, reinforcing skill development in naturalistic settings.
This session demonstrates how recreation and social participation can be intentionally designed to support mental and physical wellbeing, friendship development, and inclusion. It offers practical examples for community organisations, therapists, and educators seeking to embed social participation as a core element of holistic support for people with Down syndrome.
