The ND Community Operations introduced the Progressing Disability Services (PDS) Roadmap item to the Committee, noting the paper circulated in advance of the meeting was intended to support discussion. She advised the Committee that significant feedback received from the Chair and Committee member B Whelan prior to the meeting has been incorporated into the Draft PDS Roadmap document. She confirmed that a revised draft of the PDS Roadmap document would be provided to the Committee following the meeting.
The National Disability Specialist (NDS) gave a presentation to the Committee which facilitated engagement with members on: the wider context of Progressing Disability Services; establishment of Children Disability Network Teams (CDNTs); the purpose of the PDS Roadmap document; and wider Disability legislative and service context underpinning the need for the Roadmap.
She advised the committee that historically, services for people with a disability in Ireland were provided by religious orders and later by voluntary parent and friends associations. Some organisations provided services for people with a specific type of disability or in a specific age group which resulted in a wide variation in the availability of services and in access criteria to services depending on where a child lived or what diagnosis they had.
The NDS confirmed that the Progressing Disability Services for Children and Young People Programme (PDS) was developed to address this significant variance and risk, with a view to ensuring that all children with a disability or complex developmental delay have equity of access to services, based on their need, rather than their diagnosis, where they live or go to school. In line with the Programme for Government and with Government policy, specifically Sláintecare, services are to be provided as close to home as possible.
The NDS confirmed that the PDS has been developed to support all stakeholders to progress the next phase of implementation of the CDNT model of support. The PDS Roadmap is intended to provide a framework for the various stakeholders - Ministerial, Departmental and operational through the HSE and its funded service providers - to work together in their respective roles to improve services for children and their families. It sets out a range of actions to improve the services and to set out expectations of stakeholders in the following areas: Communication and Engagement; Workforce planning; Implementation of the CDNT Model of Service; Engagement with colleagues in Education; Plans for a Review of the implementation of the CDNT structures; and Assessment of Need.
The NDS advised that the establishment of CDNTs represents the first step in the delivery of the Sláintecare programme. This model is underpinned by values of person centeredness, inclusion, community integration, participation, independence and choice. The CDNTs were established to provide services for at least 42,000 children with complex needs in the State. Prior to their establishment, some children with disabilities or developmental delay received a relatively high level of health and social care services and many of these children and their families had long established relationships with service providers and their staff. This change programme required some children and their families to transfer to new services and adapt to new staff, new locations and a new model of support.
The NDS advised that in the context of these changes for children and families, as well as staff and providers, there was considerable public debate and challenge on the scale and pace of change, the underlying policy direction and changes to provision of specialist Disability services to children attending special schools. The capacity of services was also being significantly impacted by the prevailing recruitment and retention challenges being experienced more widely across all services and where there is a reliance on large increased numbers of health and social care professionals.
Regarding this change from therapy provision in schools and routing them to the CDNTs, the Committee highlighted that communication in this area was not sufficient at the time which compounded the issue. The Head of Disability Operations confirmed that the HSE acknowledges that some of its communication with families has fallen short of what was required and appropriate in relation to these arrangements.
The Committee queried where exactly CDNTs fit in to service and whether there is sufficient awareness among service users and their families about what they are. The NDS advised that there is currently family fora being established to advocate for service users and that this engagement will hopefully improve awareness.
In relation to Assessment of Need (AON), the NDS confirmed that children do not need this assessment to access disability services but if it is requested, the HSE legally must provide it. This process takes a significant amount of resources (noted alternative options for service delivery is under consideration) and when complete, there is no guarantee that there will be services available to meet the needs of the individual outlined in their AON. The legal right to an assessment of needs is enshrined in legislation from 2005, but neither that act nor any other legislation provides any right to the services the assessment prescribes.
The Committee discussed the AON process, querying who carries out the AONs and whether they are independent. The NDS confirmed that the assessor is employed by the HSE but they are required to act in an independent manner when carrying out assessments, each of which require 36 hours of clinical assessment.
The Committee discussed workforce planning and the communications campaigns underway currently to encourage recruitment given that vacancies in the area are 30%. The difficulties in provision are compounded by the fact that the HSE and its partners have huge difficulty in recruiting and retaining therapists in the necessary fields. It was emphasised that the CDNTs branding as a HSE service should be clarified.
The Committee requested data be provided on the total number of therapists (e.g. Occupational Therapists and Speech and Language Therapists) produced by the third level system annually as there appears to be a severe shortage. The Committee queried whether there is international data available which could help inform workforce planning. The Head of Disability Operations advised that while there is little data available, work is underway to evaluate what can be used.
The Committee thanked the COO and team for their work on the PDS Roadmap to date. It was agreed that feedback received would be incorporated into a further draft and the Chair and B Whelan would engage with the ND Community Operations directly. An updated draft will return to the Committee for consideration prior to its submission to the Board.