COORDINATED ACTION IS required by Tusla, the HSE and the Department for Children to ensure young people with disabilities who are in state care can achieve the best possible outcomes.

That’s according to a report by EPIC (Empowering People in Care), titled ‘Headphones, Odd Shoes & A Second Chance at Life’.

EPIC is a national organisation that works with and for children and young people who are currently living in state care or have experience of living in care.

Its report has been described as the first ever participative study on the lives of children in state care and care-leavers with disabilities conducted 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.   

While the report highlighted examples of good practice, and most participants described positive experiences of social workers and other professionals, there were a range of negative interactions which had a detrimental impact on their care experience.

This included poor communication, disregard for disability needs, and a sense that their views were not being sought or considered in decision-making.

The report also noted “gaps in service provision which emerged due to poor planning”, as well as evidence of “inconsistent coordination amongst state agencies, and a lack of awareness on disabilities within the care system”.

Marissa Ryan, CEO of EPIC, said the organisation is “committed to working with all stakeholders to progress the recommendations outlined in this report”.

She added: “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.” 

One of these recommendations is the need to “develop greater flexibility in systems to enable an intersectional approach to care and disability”.

This would include the reformation of the 1991 Child Care Act and the requirement for “relevant bodies to have a formal, joint responsibility for planning and provision of services”.

Ryan also said: “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.”

To combat this, EPIC has recommend an “increase to the level and availability of information about disabilities across the care system”, as well as the provision of additional resources.

It said a practical example of this would be to ensure there is a Disability Officer in each Tusla Region to provide support to social workers on how to respond to different disability needs.

Another practical measure cited was ensuring all social work graduates joining Tusla have opportunities to undertake modules informed by care-experienced children and young people with disabilities.

Ryan also notes that “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,” she added.

Most of the participants of the study were able to identify particular people who made a tangible difference in their care experience whether through provision of practical supports, health supports, legal supports, or emotional support.

However, Ryan acknowledged that another prevailing theme was the stigma, discrimination, and insufficient awareness faced by those in state care with a disability.

Participants highlighted a lack of awareness of “invisible” disabilities, difficulties in being accepted by their peers, struggles with change or communication, and “the sense of missing out on conventional teenage social experiences”.

Meanwhile, EPIC Youth Research Advisory Group Member Alan Fay noted that the research “shows that not every disability is visible and not every story is the same”. 

He added: “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.”