Ms Rachel Cassen:

I thank the Cathaoirleach and members of the committee. I am the director of Leap Ireland, an organisation formed to assist families of children with disabilities to take action for an inclusive life. Drawing upon nearly two decades of Irish policy commitments, international evidence and the lived experience of families supported by Leap, I am speaking to implore the Government to urgently scale up individualised funding or personal budgets as a core mechanism for delivering disability supports and enabling inclusion.

When we ask the question what works and what is worth investing in to ensure children and young people with disabilities achieve inclusive lives, we see that some of the fundamental enablers of good lives over the life course are inclusive education, employment and access to individualised funding. To support full and effective participation of children and young people with disabilities, investment should focus on resourcing children and families to stay on an inclusive life path. Parental expectations play a crucial role in shaping post-school outcomes for young people with disabilities, so work to foster a shift in mindset is essential, as is providing financial resources to families to keep children included in ordinary community life. Families need to be supported to envision and plan for an ordinary, typical life.

To support this, funding needs to move away from institutionalised services and towards the creation of community-based roles such as inclusion facilitators to work with families of young children to support their child’s inclusion in ordinary community life. Leap’s work with families highlights that true inclusion is only possible when children and adults with disabilities are supported to live ordinary lives in ordinary places. Despite Ireland’s ratification of the UNCRPD in 2018, current policies and funding structures continue to reinforce institutional models, particularly in education, employment and disability support services. Critical enablers of inclusive lives such as individualised funding, inclusive education and access to open employment remain largely underdeveloped or inaccessible to people with disabilities.

Since Leap’s inception in 2012, we have advocated for key reforms, including the introduction of individualised funding, which is a key factor in enabling meaningful lives for people with disabilities. When combined with the vision of an ordinary life, individualised funding can be transformative in helping people with disabilities to lead inclusive lives in their communities. Individualised funding available to children and adults enables fundamental elements of an inclusive life, namely, an inclusive education and open employment. Without these two elements being present, people with disabilities risk marginalisation and can find it very hard to access valued roles in society. As such, they become exposed to the risks of marginalisation, isolation, social exclusion and endemic poverty. Individualised funding when paired with a vision of an inclusive life can produce life-changing outcomes.

These outcomes are incompatible with traditional congregated service models of disability services where funding is block granted to service providers and leads to poor social, educational, and economic outcomes for disabled people. These institutional models reinforce dependency and fail to support meaningful community participation. In contrast, participants in individualised funding pilots report increased independence, confidence, skill-building and community integration. The best way to achieve these outcomes is to shift funding to the individual in the form of individualised funding coupled with community-based supports to pursue these goals. Giving people individualised funding and then abandoning them to their own resources does not work either.

In October 2016, the then Minister of State with responsibility for disability established a task force to make recommendations on a personalised budgets model, which would give people with disabilities more control in accessing personal social services.