Dr. Joanne McCarthy:

I thank the three Co-Chairmen for initiating this meeting. We recognise the pioneering nature of the initiative with the three committees taking time to consider how they can jointly explore issues and hopefully make improvements in the lives of people with disabilities. Dr. Patricia McCarthy, whose expertise comes through lived experience as well as research, and I are together making our submission on behalf of the Disability Federation of Ireland, DFI. I will set out the broad policy questions that the committee might need to consider on the topic and Dr. Patricia McCarthy will bring these to life by sharing her lived experience and drawing on her research.

I refer members to the paper we submitted earlier this week and we will build on that in today's conversation. I also refer to my colleague, Ms Joan O'Donnell, who presented on this issue to one of the joint committees in January. Her more expansive paper gives greater depth to the issue.

DFI is a national representative umbrella body working to make Ireland more inclusive and fairer for people with disabilities. We have more than 120 member organisations which provide support services to people with disabilities as well as working with a growing number of other organisations with an interest in securing better outcomes for people with disabilities in Ireland. DFI works to make Ireland fairer for people with disabilities.

I am not going to try to reiterate what members of the committee already know. I am going to try to encourage them to think in a very particular way when looking at this issue. We know that working in silos has consequences. When the planning and delivery of health and personal social services for people with disabilities take place in siloes, it is people with disabilities who feel the consequences. Policies that are good but in a silo sit in a vacuum and are unable to respond to the complex and often interwoven experiences of exclusion and discrimination of people with disabilities. The exclusions and daily challenges people with disabilities face cannot be resolved through the provisions and supports offered by any one Department.

While systematic responses to disability can be really useful in their own right, they often fail to appreciate that people with disabilities also experience and are open to the pressures of open labour market challenges such as precarious work. They are also subject to the challenges faced by the working poor and affected by the reality of youth unemployment. When it comes to employment and activation, people with disabilities have specific issues related to their disabilities, but they are also open to the pressures the general population experience. One of the main things the Disability Federation of Ireland would like the committee to consider is that people with disabilities are not simply defined by their disabilities. As they make up a heterogeneous group, no one answer will resolve an issue for everybody.

It might be useful at this time to take a moment to reflect on who are the disabled. In their constituencies and the work they do on committees members will have a particular understanding of who makes up the group of persons with disabilities about whom they talk. However, there are certain standards to which it is important we all come around. According to the 2016 census, there are more than 640,000 people with disabilities in Ireland. We appreciate and anticipate that this year an additional 56,000 people will be diagnosed with some disability. Some 71% of the people concerned are out of work, which is a very high rate. We know that 26.3% are living in consistent poverty. These are really stark figures and we need to take time to consider how best to plan and support the delivery of employment and activation supports in order to at least begin to address these issues.

There are other very interesting statistics into which my colleague, Dr. McCarthy, will probably delve a little further. We know that there are 250,000 students in higher education, of whom less than 6% are people with a disability who require support. People with disabilities are hugely under-represented in this area which could give them opportunities which would enable them to access employment.

To address the members of the Joint Committee on Health, we cannot ignore the interface with health. If one considers that there are 640,000 people with disabilities in Ireland but that the health service supports approximately 20,000 people with disabilities in day services and approximately another 8,000 in residential services, there is a significant proportion outside the system of support. The committee needs to consider that issue.

As I said, the statistics are stark and require reflection. Disability has shown itself to be stubborn and persistent. This is something we need to acknowledge from the outset. However, even in the face of its resilience, it is important to know that people with disabilities do want to work and explore opportunities equal to those available to their non-disabled peers. The Make Work Pay report in 2017 noted that this desire to work among people with disabilities must at all times be balanced against the risk of losing benefits, the challenge presented by the interface between Departments and services and the exhausting nature of deciding whether to work full time or part time and so on. People with disabilities are all the time weighing the pros and cons of the opportunities available to them. It is not all bad though. It is important to take this opportunity to formally note the efforts made across Departments to address these issues. The statistics are so stark that people have become genuinely committed to resolving the issues they raise. We have a comprehensive employment strategy. The three Departments have come together and are committed to trying to work cross-departmentally to address the issues, which has to be welcomed. For more than 15 years the HEA has invested significantly in resources for students in higher education. There is also a new programme of adult day services in the HSE which is investing in new supports and models in the area of vocational training.

There are initiatives which are doing very well in their own right. However, we see some of the biggest challenges where they depend on an interface with other Departments and agencies. To take the HEA as an example, one has to be a full-time student to benefit from or access its services. As a student, one might also be successful in accessing personal assistant services to provide support in one's educational endeavours in university, but one may not be able to match it with a personal assistant service on the health side in order to live independently in digs just like every other student. Research suggests most people who receive personal assistant services from the HSE receive a service for approximately 12 hours a week. That is not a sustainable number of hours to support someone in further education.

Equally, the Make Work Pay recommendations included a really good initiative to engage with people with disabilities to find answers. They are telling us that one of the biggest problems is with the income threshold for receipt of a medical card. Even though this initiative is being driven by the Department of Employment Affairs and Social Protection, one of the biggest challenges people with disabilities face is that they will always have to weigh whether they can afford to go back to work. The cost of their disabilities may mean that they are hugely dependent on their medical card and that they cannot jeopardise it. These are just some of the examples that demonstrate why it is really important and we applaud the committees for taking the time to consider how they can jointly begin to look at streamlining some of these issues.

Because the lived experience is much more exciting than what I am telling members, I would like to give them a few things to think about throughout this engagement and, equally important, the engagement the committees will have with senior officials and when writing up their report after the meeting. We know that disability is complex, as do the members. No one Department and no one answer will shift the low rates of access and participation of people with disabilities or deal with the cost of disability or the poverty associated with it. However, there are answers which the committees can jointly begin to prioritise and on which they can move. We encourage them to think about the issues in a systemic way, which can oftentimes be a challenge. We encourage them to agree on two or three key measures which they believe would have a significant roll-on effect in enabling policies and access for people with disabilities. Some of the key issues at which the committees could begin to look - Dr. McCarthy will probably explore them in much greater detail - include how synergies could be found in the data required in each Department, eligibility criteria and how supports and services can transition seamlessly from further to higher education to training in order to stop people with disabilities from having to continuously go back and re-enter the system to try to maintain ongoing supports.

I encourage the committees to look at disability proofing generally. We are talking in specific terms about some of the disability-specific initiatives at which the committees can look. It should start with a disability proofing process that cuts across all of the work of the Departments. When opportunities are seen which should equally be of benefit to people with disabilities but where that appreciation is lacking, they should be made available. One example which is live is the provision of career guidance, of which there is a review. It is critical in supporting people with disabilities and giving them ambition to move beyond the boxes in which others sometimes put them. One should always think about building flexibility into systems and supports.

People with disabilities require that flexibility because of the precarious nature of disability and the ebbs and flows, as well as the fact that they sometimes cannot participate in full-time employment or education. Where is the flexibility that enables a person to benefit at a pace that is appropriate and relevant to his or her issues?

The Disability Federation of Ireland encourages the committees to take the time to think about disability in a systemic way and try not to see the answer as sitting in one particular programme or Department. Members should ask how we can create an interface between the opportunities and the good programmes in each Department so as to enable people to travel seamlessly. They should be looking to develop a passport for people with disabilities through education and employment. This is an opportunity do so.