Mr. Bernard O'Regan:

I thank the committee for the invitation to meet it today to address matters relating to aligning disability services with UNCRPD and, in particular, an update on progress regarding disability services. I have recently taken up the role of head of operations replacing Dr. Cathal Morgan who previously attended meetings with the committee. I am joined today by Ms Breda Crehan Roche, chief officer, community health organisation west, and Professor Malcolm MacLachlan, clinical lead for the national clinical programme for people with disabilities.

The UNCRPD requires that the rights and needs of people with disabilities are considered across all aspects of Government and its agencies. It reflects the shift from a medical, paternalistic model of service delivery, to a model where citizenship, rights, will and preference of the individual are at the core of policy and service provision. It puts the needs of people with disabilities at the core of public policy and the relevant service provision. It has at its core that people with disabilities are citizens with the same entitlements as all other citizens and it challenges states to make the necessary legislative, policy and funding decisions so that people with disabilities realise that citizenship, that right to an ordinary life.

The HSE welcomes the transfer of functions from the Department of Health to the Department of Children, Equality, Disability, Integration and Youth as being an important enabler in ensuring cross-departmental and whole-of-government approaches to ensure that people with disabilities have equity of access. HSE disability services are primarily focused on the specialist service needs of the 60,000 people with disabilities with complex needs requiring specialist services based on individual needs. Some 600,000 other people with disabilities do not generally need access to specialist services, but require access to mainstream services such as primary and acute care, older person’s services and so on.

The HSE corporate plan 2021–2024 commits to a vision of reimagined disability services to be the most responsive, person-centred model achievable with greater flexibility and choice for the service user. It will support people with disabilities to live a full life in the community with access to a range of person-centred community services and supports across their lifespan. Specialist services are provided within the context of Transforming Lives. This is the broad policy banner for a wide range of other policies, including, but not limited to New Directions, Time to Move On from Congregated Settings, neuro-rehabilitation strategy and implementation framework, personalised budgets, progressing children’s disability services and autism policy. It is important to note that even though Ireland did not ratify the UNCRPD until 2018, many of these policies were developed in the context of, and aligned with, the UNCRPD which has set the strategic and operational direction for the services provided by the HSE and by providers funded by the HSE.

In operationalising these policies, the primary activities of the HSE include more than 1,000 people who transitioned from congregated settings to community based living arrangements in line with promoting inclusion and participation in community life, as well as 19,000 people who avail of day services in line with the 2013 New Directions policy that outlines that all supports available in communities be mobilised so that people have the widest possible options for how they live their lives and spend their time. It places a premium on making sure that being part of one’s local community is a real option and recognises that people with severe and profound disabilities may need specialised support throughout their lives.

Progressing children's disability, PDS, is a significant programme of reform that changes the way we deliver services and supports for children and young people with complex needs through 91 children's disability network teams. The reform of services in line with the PDS programme is an integral part of Sláintecare health reforms and is a key policy commitment in the programme for Government. It provides a clear pathway and fairer access to services for all children and young people with disabilities based on their needs, ensuring that effective clinical teams work in partnership with families and education staff to support children and young people in reaching their full potential.

The personalised budgets demonstration project is an important initiative piloting a range of options for personalised budgets to inform Government decisions on the viability of various approaches in the future for those who wish to avail of them.

The national service plan sets out the HSE investment and reform programme year on year. The HSE welcomes the significant additional investment in disability services of in excess of €200 million over the past two years, which has been utilised to advance alignment with UNCRPD by increasing personal assistant hours to 1.7 million hours and home supports to 3.12 million hours; providing more than 8,000 residential places for those who need them and responding to urgent and emergency need but also developing planned options that prevent people from going into crisis; developing respite services and balancing increased centre-based respite with more innovative respite options, including intensive support packages, Saturday clubs, home sharing and contract families; establishing the digital and assistive technology committee to lead on the use of these technologies in promoting independence for people with disabilities; developing a neuro-rehabilitation service with ten additional beds in Peamount and two community network teams being established initially; increasing the number of staff in the children's network teams by 285 with a commitment to significant further development in 2022; and establishing the integrated steering group to oversee implementation of the recommendations of the Ombudsman’s report on under-65s inappropriately placed in nursing homes.

The HSE has embraced the "nothing about us, without us" concept of participation through a number of committees that have lived experience representatives and the establishment of a project to ensure that people with disabilities are fully included in decision-making and policy-setting within the HSE.

The national clinical programme for people with disabilities was established in 2020 with a specific remit to ensure the UNCRPD was implemented in disability and cognate clinical programme services. Its governance structures explicitly reflect this. There is also a focus on assisted decision-making implementation. The HSE recognises that the 2022-24 disability action plan that is being developed will be instrumental in shaping disability services and aligning them further with the convention.

I acknowledge the commitment and dedication of staff, non-statutory service providers and partners in the work they do each day in providing supports and services. The response shown in the face of Covid-19 and in pursuing a wide range of reforms gives us optimism for the future. I also note the increasing challenge of staff availability at the same time as the increasing need for well-trained staff to meet the emerging needs in the most appropriate settings. The HSE and its funded agencies have made significant progress while also acknowledging the areas for continued focus.

We are happy to address whatever questions the committee wishes to ask.