Ms Renee Dempsey-Clifford:

I thank the committee for inviting me to speak on behalf of the DSG. Before I address the questions the committee asked in its letter of invitation, I wish to explain what the DSG is and what my role as independent chairperson involves. The DSG is a voluntary group of individuals who were appointed by the Minister following an open application process in 2021. The DSG’s function is to monitor the NDIS and to contribute to the development of its successor strategies. There has been a DSG in existence since the publication of the first national disability strategy in the early 2000s. The current DSG is the sixth iteration of the group and has 23 members. The members participate in the DSG as individuals with expertise and lived experience of disability, academics, work or voluntary professional experience, or any combination of relevant factors. The membership currently comprises disabled people, family members, people who are members of disabled persons organisations, DPOs, umbrella bodies and service providers. Indeed, some members probably wear more than one of these hats. It is particularly important to note that the DSG is not an advocacy, issue-based or lobbying group.

My role in the DSG is that of independent chairperson. This role is a voluntary position. The chairperson is appointed following a call for expressions of interest. In my role as chairperson, I work with the DSG by facilitating discussions and helping the group to reach positions.

The NDA provides the DSG with secretarial and administrative support - Mr. Hunt is present with me today - which ensures good organisation and record keeping, as well as other supports. This is very much appreciated by the DSG.

I will use the remainder of my opening statement to respond to the specific questions the committee asked in its letter of invitation, the first being the development of a new UN Convention on the Rights of Persons with Disabilities, UNCRPD, implementation strategy to succeed the current strategy. The DSG believes the principles of mainstreaming, participation and evidence should underpin the next disability strategy, which should be a UNCRPD implementation strategy. Regarding mainstreaming, the DSG wishes to highlight that, in its experience, this term is not always clearly defined or understood by all. It is crucial that there be a shared understanding among all stakeholders of what is meant by mainstreaming. The DSG sees it as wider than inclusion and places self-empowerment, self-determination and equality as central to the process. Mainstreaming has human rights at its core, and for it to be realised, it must have political commitment and leadership at the highest level that are cascaded down to all members of the public service.

Regarding participation, the DSG believes that every opportunity should be taken to capture and utilise the lived experiences of disabled persons in the implementation of the convention in Ireland. It is crucial that DPOs be involved in the UNCRPD implementation strategy consultation process from the outset and in the monitoring of the strategy once it is agreed, as per Article 4.3 of the UNCRPD. The importance of other stakeholders, particularly those with lived experience of disability, being involved in the process must also be recognised, as not everyone who is a stakeholder is a member of a DPO.

Regarding evidence, the DSG wishes to highlight the importance of considering the type of evidence that is included. This includes outlining distinctions between medical model research focused on individual impairments and evidence about barriers to inclusion that people face, which reflects a social model approach.

The DSG believes it is vital that the convention become the overarching strategy for disability policy. A UNCRPD implementation plan, rather than a new national disability inclusion strategy, changes the context. An understanding across the Government of the obligation that the convention places on Departments and agencies is critical to achieve the buy-in and change that are needed to realise the rights of persons with disabilities, which will enable them to live their lives as independently as they wish.

In this regard, it is the shared experience of the DSG that the commitment to delivery of Government policy on disability can be a mixed one from Departments. Some Departments clearly accept the obligations placed on them and their agencies and press to deliver the actions with ambition and willingness. They identify barriers and are constructive in seeking solutions. They clearly accept the disability policies and actions that apply and, through regular and timely meetings, ensure continuity of delivery is supported.

Unfortunately, this is not a universal experience, and some Departments are seemingly disinterested, or occasionally indifferent, to this Government policy. Personnel changes can also be deeply influential in the level of commitment experienced by the DSG, as evidenced in setting dates for meetings, adhering to them, focusing on the actions applicable and ensuring DSG members have relevant materials sufficiently in advance of meetings.

In this context, it is the view of the DSG that, without clear obligations and answerability being placed on heads of Departments and agencies to take on the delivery of Government commitments and policy on disability, including meeting obligations under the UNCRPD, the mixed and patchy responses and inertia experienced by the DSG will continue. Given the number of people with disabilities in our society - more than 21% according to the 2022 census and undoubtedly likely to be higher when the next census is published - the DSG regularly struggles to understand how the importance of meeting Government commitments towards people with disabilities can be placed as a relatively low priority by some Departments and agencies.

From the DSG's experience of monitoring the current strategy at departmental level, the DSG would observe that some Departments have established well-functioning monitoring structures called disability consultative committees, DCCs, while others have not succeeded in doing so. There can be a lack of alignment between Department-level reporting and the strategy's overall commitments. The DSG has suggested that improved reporting by DCCs on their Departments’ targets and outcomes by providing an annual report would improve accountability. The DSG has advised that it would help DCCs to operate more effectively if Departments better understood the DSG itself and the reasonable accommodations required for members to participate in meetings. It would also help if Departments had a better understanding of the role of DPOs and had a better balance of disabled people represented on their DCCs, with a clearer understanding of the different role that service providers play.

I will not speak for too much longer.

There has been a lack of progress and action since the previous strategy closed at the end of 2022. It is fair to say the DSG is frustrated with the slow pace of consultation on the new strategy. The DSG has a good working relationship with the Department of Children, Equality, Disability, Integration and Youth, which is the lead Department, and we recognise the challenge of developing a strategy that adheres to the UN convention. However, there is a sense in the DSG that the development of a new strategy is not the priority it should be for the Department. The previous strategy was extended from 2021 to 2022 in order that a successor strategy could be developed. However, we have found that, to date, the pace of the consultation process and the model of consultation for developing the new strategy have not met expectations. The consultation is currently at a stage where it is focused on how a strategy could be developed rather than discussing the content of the strategy. Unless the model of consultation for developing a new strategy can properly accommodate all stakeholders, particularly DPOs, there is a risk that progress will remain slow. Having said that, the DSG recognises that all participants must support the process through consensus building, collaboration and willingness to progress.

Given that not all actions under the NDIS were completed, the DSG advised that the national departmental monitoring meetings should continue until such time as a new strategy is published and new monitoring structures are established. However, those meetings have been discontinued. The DSG believes this is a missed opportunity for meaningful progress to continue.

The DSG has sought clarity as to whether the term of the current DSG membership will be extended until the new convention strategy is developed. To date, the lead Department has not provided that clarity. Consequently, we now have a hiatus that has sidelined the monitoring process, leaving DSG members without the role and function they volunteered for and were appointed to perform.

There must be action to enable effective cross-Department collaboration for the new strategy in order for it to make progress and to impact positively on the lives of disabled people. The convention needs to be understood as a shared goal by all, that is, Departments, State agencies, service providers and local authorities. There must be leadership on, and accountability for, delivery of disability policy at all levels.

I thank the Chairman for allowing me to make this statement on behalf of the DSG. I am prepared to answer questions members may have.