Dr. Ní Bhriain, Prof. MacLachlan, Mr. Walsh and Dr. Hanlon joined the meeting at 11.45.
Prof. MacLachlan outlined the context of the NCP ‘People with Disability’ (NCPPD) Programme. In terms of the layers of systems change, he provided an update on the status of progressing disability services for children and young people, advising that this piece of work is due to be completed in 2022. He advised the Committee that the transfer of the function from the Department of Health to the Department of Children, Equality, Disability, Integration and Youth is due to be completed this month and that the plan to move to Regional Health Areas was scheduled for 2024.
It was noted that the governance structure for the 31 national clinical programmes report directly to the CCO. It is overseen by 6 National Clinical Advisors and Group leads (NCAGLs), who each have a number of clinical leads reporting to them.
He advised that the World Health Organisation is creating a rights-based model of leadership and governance, which is seen as an Irish initiative within Europe. The Chair suggested a discussion on this at a later meeting once the paper has been finalised. Prof. Mac Lachlan defined the purpose of the National Clinical Programme for People with Disability (NCPPD) as, “to support the design of effective and efficient assessments, interventions, and supports for people with disability; that are evidence-informed and context-appropriate, and provided within a social and rights based model of disability”.
In terms of achieving quality and safe patient care, he outlined the NCPPD collaborations with other stakeholders, namely National Disability Operations, National Disability Planning and Change Delivery, Disability Advisory Group, Other National Clinical Programmes and outside agencies.
He took the Committee through the Programme Activities in terms of Clinical Designs and Broader Disabilities. Specifically, under the Clinical Design activities, Prof Mac Lachlan provided an update on the ‘Assessment of Need’ process, which was approved within HSE via the CCO Clinical Forum, and advised that the Minister of State at the Department of Children, Equality, Disability, Integration and Youth had decided to obtain separate legal advice on the matter. He cautioned that this may incur a further delay in the use of AON.
Prof. Mac Lachlan outlined the challenges, risks and opportunities for the Programme and advised of the need for a multi-annual investment strategy in disability services, as outlined in the Disability Capacity Review. He highlighted the challenges associated with large-scale change in children’s and related services and also with integrated working and planning between different care groups. He also outlined challenges presented by the Disability Act and the interpretation of the Act. He spoke about recruitment and retention issues in Disability Services, both in the short and longer terms and in terms of meeting the supply line.
A discussion was held on the role of the United Nations Committee on the Rights of Persons with Disabilities (CRPD), the body of independent experts which monitors implementation of the Convention by the States parties. He advised that the Disability Act allows people to claim rights and, once the optional protocol has been ratified, it will allow citizens to report where we fail to comply with the CRPD.
The Committee discussed the importance of ‘mainstreaming’ from a number of perspectives: in claiming a right to independent living standards, in achieving a new Assessment of Needs, in completing a transfer of functions from the Department of Health to the Department of Children, Equality, Disability, Integration and Youth and in redesigning of the Clinical Programme. Prof. Mac Lachlan acknowledged the importance of the right to independent living standards and advised that it is important for someone in a clinical programme to have a role around mainstreaming. The Committee was advised that there are many discreet projects ongoing with mainstreaming in mind, in addition to two task pieces on support for adults and education, leadership and disability awareness.
There was discussion on ‘what a rights-based approach looks like” and Prof. MacLachlan suggested that how to inculcate this ethos more broadly into the programme needs to be explored. Prof. MacLachlan agreed to share the WHO document on a rights-based leadership approach with the Committee and advised that the evidence is strong for this approach. Dr. Ni Bhriain advised that implementation of the Assisted Decision-Making (Capacity) Act will help us greatly in this area and that additional funding had been achieved for this purpose this year.
Dr. Ni Bhriain acknowledged that Mr. Walsh and Prof. MacLachlan are leaving the programme. She advised that the positions have been advertised and that applications are being short-listed currently. She thanked Mr. Walsh and Prof. MacLachlan for their contribution.