EPIC publish new study on the lives of children in care and care-leavers with disabilities and call for improved inter-agency action   

• Supportive individuals made the greatest impact, with most participants identifying particular people who made a tangible difference in their care experience through provision of health or legal services, and practical or emotional support.
• Participants who experienced early intervention from multi-disciplinary teams reported a significant benefit to their health and wellbeing while in care. 
• Negative experiences were rooted in stigma, inaccurate assumptions, and a lack of awareness on disability, as well as accessibility issues in care placements and difficulties securing appropriate accommodation.
• Specific challenges for children in care and care-leavers with disabilities include the need to identify and access timely and effective services, and a lack of coordination between agencies responsible for their care.  

Today, EPIC, Empowering People in Care, launched a first of its kind study on the lives of children in care and young care leavers with a disability. The report, titled Headphones, Odd Shoes & A Second Chance at Life, explores the experience of children in state care and young care-leavers with disabilities across several counties in Ireland. The research includes young people with a range of care experience, including foster care, residential care, and aftercare services, as well as with various disabilities, including physical, intellectual, and learning disability.   

The report highlights examples of good practice, but also the need for coordinated action by DCEDIY, the HSE and Tusla to ensure children with disabilities in state care achieve the best possible outcomes. Positive actions identified included the impact of effective early intervention, while the report also noted gaps in service provision which emerged due to poor planning, inconsistent coordination amongst state agencies, and a lack of awareness on disabilities within the care system. 

Marissa Ryan, CEO of EPIC, said: “This is the first ever participative study on the lives of children in care and care-leavers with disabilities conducted in Ireland. What leaps from the page is the huge enthusiasm of these children and young people to build a better society – a society where they are recognised, supported, and included, and where their rights and dignity are always upheld.”  

“One theme emerging from the report is the critical role a supportive adult can have in a child in care’s life as they navigate the care system with a disability. These include foster carers, social workers, aftercare workers, residential care workers, EPIC Advocates, teachers, and health professionals.” 

“Another prevailing theme was the stigma, discrimination, and multiple marginalities faced as a result of being in state care with a disability. This was highlighted by participants expressing challenges encountered such as not feeling heard, their conditions being misunderstood or downplayed, and having to navigate serious decisions regarding their health with insufficient support. The provision of basic information and access to disability services was found wanting by a number of those interviewed, as was access to appropriate accommodation which meets the needs and the ability of the individual.  

Some of the young people that participated in the study have called on the Government to prioritise children in its care with disabilities, and want immediate action taken to address persistent obstacles to disability services, as well as to higher education.  

Alan Fay, EPIC Youth Council member and Youth Research Advisory Group Member said: “The research shows that not every disability is visible and not every story is the same. While there might be similarities, there are also differences of experience. In my case, for example, it’s not just me living with my disability, it is also my grandparents who are my foster carers.”

“More research, stronger policymaking and better inter-agency collaboration could reduce some of the barriers faced by children in care and young care leavers with disabilities. And the importance of strong aftercare services cannot be emphasised enough, to ensure we have the supports to go on in life and achieve our aspirations and goals just like our peers.”  

EPIC’s 2021 Advocacy Service data revealed that approximately one in ten of EPIC’s cases involved a child or young person in care or aftercare with a diagnosed additional need. The type of need varied, as did the level of tailored support required, with some having more than one diagnosis. The 2021 report also raised concerns that these findings may underestimate the actual prevalence of additional needs amongst children and young people who engaged with EPIC.  

Ms. Ryan concluded: “EPIC is committed to working with all stakeholders to progress the recommendations outlined in this report, to ensure that care-experienced children and young people with disabilities have their rights upheld and their needs met. With responsibility for disability having formally moved to the Department of Children, Equality, Disability, Integration and Youth, EPIC sees an opportunity to develop better research and data on children in care with disabilities, and to establish a dedicated response to improve national policy and practice.” 

• Read the full report.
• About this report: This project has received funding from the Irish Human Rights and Equality Grants Scheme as part of the Commission’s statutory power to provide grants to promote human rights and equality under the Irish Human Rights and Equality Commission Act 2014. The views expressed in this publication are those of the authors and do not necessarily represent those of the Irish Human Rights and Equality Commission. This report was written by independent Researcher, Deborah Erwin, with input from EPIC staff.
• About EPIC, Empowering People in Care: EPIC is a national organisation that works with and for children and young people who are currently living in state care or who have experience of living in care. This includes those in residential care, special care, and foster care, as well as children accommodated by the State under Section 5 of the Child Care Act, 1991 and those sentenced or remanded by the courts in Oberstown Children’s Detention Campus. EPIC also works with young people preparing to leave care, in aftercare services, and with young adults with care experience up to the age of 26 years. EPIC is the only independent organisation providing a direct 1:1 advocacy service to children and young people in the care of the State or in aftercare services in Ireland. EPIC also conducts research and policy work and runs a youth participation and engagement programme.