Advocacy
Our advocacy department supports branches and families across the country with their inquiries, providing relevant information, and acting as a key point of contact and resource for those seeking assistance.
It also involves engaging with stakeholders across various sectors on advocacy-related matters and contributing to consultation pieces with policymakers.
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Support Groups
Regression Support Group
A support group for families dealing with regression in individuals with Down syndrome, offering a space to share experiences and receive guidance. Approximately every three weeks. The next group will be taking place on October 23rd at 8pm.
How to Get Involved
Registration link for upcoming Online Regression Support Group
Email ginagrant@downsyndrome.ie for more information.
Parents of Children of All Ages Support Group
Providing a space for parents to discuss concerns, share experiences, and receive guidance on various topics. First Thursday of every month at 11 AM and 8 PM. The next group will take place on October 2nd.
How to Get Involved
11am Registration Link for upcoming Monthly Support Group
8pm Registration link for upcoming Monthly Support Group
Email ginagrant@downsyndrome.ie for more information.
Parents of Adults (21+) In Their Care Support Group
Focused on the unique challenges faced by parents caring for adults with Down syndrome, including advocacy, independence, and long-term planning. First Tuesday of every month at 11 AM and 8 PM. The next group will take place on November 4th.
How to Get Involved
11am Registration Link for upcoming 21+ Parents Support Group
8pm Registration Link for upcoming 21+ Parents Support Group
Email ginagrant@downsyndrome.ie for more information.
Dual Diagnosis: Down Syndrome & Autism Support Group
This is a dedicated monthly space for parents and caregivers of individuals with both Down syndrome and autism. This online support group offers a safe, understanding environment where you can connect with others who truly understand the unique experiences, joys, and challenges of a dual diagnosis.
Who is this for? Parents and caregivers of individuals with a dual diagnosis of Down syndrome and autism. First Wednesday of every month at 11 AM and 8 PM. The next group will take place on October 1st.
How to Get Involved
11am Registration Link for upcoming Dual Diagnosis Support Group
8pm Registration Link for upcoming Dual Diagnosis Support Group
Email ginagrant@downsyndrome.ie for more information.
Sibling Support Group
When parents begin to step back — or pass on — the role of support often shifts to brothers and sisters. This session explores the unique journey of siblings who take the next step in caring for, advocating with, and walking alongside their brother or sister with Down syndrome. Together, we’ll share experiences, challenges, and hopes for the future, focusing on how siblings can provide stability, foster independence, and carry forward the love and security their parents envisioned.
The next group will take place on September 29th.
How to Get Involved
7pm Registration Link for upcoming Siblings Supporting Siblings with Down Syndrome Support Group
Email ginagrant@downsyndrome.ie for more information.
Grieving Parents of Children with Down Syndrome Support Group
This online group offers a compassionate and understanding space for parents who have experienced the heart breaking loss of a child with Down syndrome. Here, you can connect with others who share a similar journey, find comfort in shared experiences, and give and receive support through grief. Together, we honour the memory of our children, celebrate their lives, and walk alongside one another in healing.
The next group will take place on September 23rd.
How to Get Involved
11am Registration Link for upcoming Support for Grieving Parents of Children with Down syndrome
Email ginagrant@downsyndrome.ie for more information.
Down Syndrome and Arthritis Support Group
Living with arthritis can bring unique challenges for people with Down syndrome, as well as for their families and carers. This monthly online group provides a safe and supportive space to share experiences, ask questions, and learn from one another. Whether you are newly navigating arthritis or have been managing it for years, this group is here to provide connection, support, and practical guidance.
The next group will take place on September 24th.
How to Get Involved
11am Registration Link for upcoming Online Down Syndrome and Arthritis Support Group
8pm Registration Link for upcoming Online Down Syndrome and Arthritis Support Group
Email ginagrant@downsyndrome.ie for more information.
Services
Advocacy Support for Families and Branches
- Providing guidance and assistance on advocacy-related issues, including navigating service providers, entitlements, and rights. Ongoing, as needed.
- Contact via email ginagrant@downsyndorme.ie or phone 0861975416 for support and signposting to relevant information.
Stakeholder Engagement & Policy Consultation
- Engaging with policymakers, service providers, and other stakeholders with the hope to influence policy and improve services for individuals with disabilities.
- Regular participation in consultations and working groups.
- Opportunities for families and branches to provide input through surveys, meetings, and consultation events.
Independent Living & Rights Advocacy
- Supporting individuals with Down syndrome who seek greater independence, advocating for their rights. Case-by-case basis, ongoing support.
- Assisting with the referral through social workers or disability services.
Housing & Social Support Advocacy
- Assisting families in advocating for social housing, disability supports, and navigating income thresholds affecting benefits. As needed, case-by-case basis.
Other Supports
Emotional & Peer Support
- Providing a listening ear and reassurance to families navigating challenges.
- Creating safe spaces where families feel heard and supported.
- Encouraging peer connections to reduce isolation.
Information Sharing & Awareness
- Keeping branches updated on policy changes, entitlements, and resources.
- Providing easy-to-understand explanations of rights and available supports.
- Raising awareness of key issues affecting individuals with Down syndrome.
Networking & Community Building
- Connecting families with others in similar situations to share experiences.
- Facilitating introductions between families and relevant professionals.
- Supporting local advocacy efforts in the hope to strengthen the community voice.
Empowering Families to Advocate
- Helping families build confidence in advocating for their loved ones.
- Providing guidance on effective communication with service providers and policymakers.
- Offering tools and templates for advocacy efforts (e.g., letters, meeting requests).
Encouraging Inclusion & Independence
- Promoting the importance of independence and self-advocacy for individuals with Down syndrome.
Challenging outdated attitudes.
Surveys & Conferences
FEAST Nutrition Surveys
Nicola Hart, Down Syndrome Ireland’s National Research and Support Specialist, is working with a European research project on nutrition. There are two surveys. One survey is for people with Down syndrome and the other is for the person who takes care of a person with Down syndrome.
Survey for Person with Down syndrome
Survey for Parent/Guardian/Carer of Person with Down syndrome
For further information, please contact nicola@downsyndrome.ie
Conference Supporting Health and Wellbeing of Adults with Down Syndrome
There will be a conference aimed at parents, carers and people working in adult services. Topics will include developments in further education and employment, general health awareness, vision and visual difficulties, menopause, regression, dementia, supported decision making, a family carer’s perspective and supporting health and wellbeing.
Venue: AIB conference facilities, Molesworth Street, Dublin city centre
Date: Friday November 7th, 2025
Further information and registration to follow.
For further information, please contact nicola@downsyndrome.ie
Pre Budget Submission 2026
Down Syndrome Ireland submitted this Pre Budget Submission for Budget 2026 to the relevant departments in the Government.
Pre Budget Submission Easy Read 2026
MEET THE TEAM
