New study reveals supports are needed for siblings of people with intellectual disabilities

Supports for siblings of people with intellectual disabilities or Autistic Spectrum Disorder (ID/ASD) must be improved according to the main findings of a recent study undertaken by a research team from University College Cork in partnership with Inclusion Ireland.

The research report – funded by the National Disability Authority (NDA) and called ‘Adult Siblings of Individuals with ID/ASD: Relationships, Roles and Support Needs’ – is the first study of its kind in Ireland that gives a voice to adult siblings of people with intellectual disability or autism.

In total, 25 siblings who are aged 18-45 and living in various parts of Ireland and abroad, participated in the study which was officially launched at the NDA office in Dublin today (Monday, December 12th). Three main themes were explored in the research; specifically, childhood experiences, current adult sibling relationships and hopes and aspirations for the future.

The study reveals serious gaps in the supports available to siblings throughout the life course. None of the participants, growing up in the 1970s, 1980s and 1990s, had received any supports addressing their role as a sibling of an individual with intellectual disability or autism.

The importance of planning for the future is highlighted throughout the research with many siblings reporting that their parents were reluctant to engage in this kind of planning. The researchers note that the limited availability of adult services acts as a barrier to effective futures planning.

The research also suggests that little consultation takes place with people with intellectual disabilities or autism on the future living or care arrangements that they themselves would like. It is important that the voice of people with disabilities is heard and that their will and preference is taken into account in all decisions around their future living and support needs. 

Inclusion Ireland CEO, Paddy Connolly, said:

“This research demonstrates the important supportive role that siblings play in the lives of people with disabilities – it is clear that policy and service planning needs to pay greater attention to the perspectives, experiences and needs of siblings.

“It is also crucial that adequate financial and other person-centred supports, including access to a personalised budget, assisted decision-making and independent advocacy support are available to individuals with disabilities. With the implementation of personalised budgets and the Assisted Decision Making (Capacity) Act 2015, it will be important to ensure that siblings are informed, enabled and fully supported in the role they might play in supporting their brothers and sisters with intellectual disabilities or autism.” 

Dr Máire Leane, head of the research team from UCC, said:

“Future supports for people with ID/ASD depend on a social care model, which includes and acknowledges the important role that siblings play. Key supports required include: information about disability entitlements and service provision, support with engaging in family discussion of future and transition planning and access to high standard day, respite and residential services for brothers and sisters with ID/ASD.

“Siblings need to be supported by parents, professionals and service providers from an early age. This support must be age appropriate and tailored to meet individual needs. As many students with ID/ASD are now integrated in mainstream schools, there is a need for disability awareness education to be integrated into primary and secondary school curricula. A dedicated Irish web forum to meet the information and support needs of adult siblings of people with ID/ASD would be useful.”

More information 

‘Adult Siblings of Individuals with ID/ASD: Relationships, Roles and Support Needs’ (PDF)

Official Press Release (Inclusion Ireland & UCC)

Article regarding the study in the 'Irish Examiner'

Kate Butler interview on Sean O'Rourke Show (after 40 minutes)