I thank the Chairperson and members of the committee for the invitation to attend this meeting to address matters relating to the report by the Ombudsman for Children entitled Unmet Needs, with regard to assessments of need under the Disability Act 2005. I am joined today by my colleagues: Professor Malcolm MacLachlan, clinical lead for people with disabilities; Ms Breda Crehan-Roche, chief officer, community healthcare organisation west; and Ms Angela O’Neill, national disability specialist, community operations.
The ombudsman’s report was published following extensive engagement by the Ombudsman for Children's office, OCO, with a wide range of stakeholders. The HSE met with investigators in the OCO and provided significant levels of information to support the development of this report which emphasises the need for early intervention for children with disabilities as well as the requirement for additional resources to meet the demand for assessment of need.
The OCO makes a number of recommendations with regard to the needs of children and young people with disabilities. The HSE particularly welcomes the recommended review of Part 2 of the Disability Act 2005 and the relevant sections of the Education for Persons with Special Educational Needs, EPSEN, Act. The OCO identified a number of issues of concern with regard to the Act and the HSE agrees with this position and is committed to actively participating in any review of current legislation. It is our firm belief that addressing compliance with the Disability Act and the obvious challenges posed by the assessment of need process must be considered within the context of a wider reform programme for children and young people’s disability services. While acknowledging the very significant level of resources allocated to disability service provision, which was approximately €2.2 billion in 2021, planned multiannual investment coupled with reform of the sector is necessary in order to build and strengthen early intervention and the provision of family-centred supports.
In terms of reform specific to services for children and young people with complex disability support needs, the HSE and our voluntary agency partners are committed through the progressing disability services programme to reconfiguring services to children’s disability network teams. These teams will provide interdisciplinary, child and family-centred services for children based on their presenting needs rather than their diagnosis, a key concern referenced in the ombudsman's report.
The HSE and our lead agency partners are working hard to ensure that all children’s disability services fully reconfigure to these network teams during the first and second quarters of 2021. This change will ensure that children have access to early intervention rather than waiting long periods for diagnostic assessments and potentially ageing out of services before they access intervention. While the HSE acknowledges that some education services continue to request a diagnosis, we fully support the recommendation of the OCO that the access criteria for such services should be reviewed and that a clear pathway based on need is required.
Since 2019, substantial additional resources have been allocated towards children’s disability services with a particular focus on assessment of need. For example, a total of 100 additional therapy posts were allocated in 2019 and targeted specifically towards assessment of need. In 2020, €7.8 million was allocated through the Sláintecare healthcare reform initiative to facilitate the HSE to address the backlog of overdue assessments, thereby supporting these children's network teams being established to prioritise intervention having cleared the backlog of overdue assessments in each community healthcare organisation, CHO. Furthermore, the HSE national service plan for 2021 allocated 100 additional posts to the new children's disability network teams.
Although additional resources are very welcome, we are aware the absence of the progressive disability services reform programme and changes in the assessment of need system will limit the opportunity for those resources to have real impact on the lives of children and young people with disabilities. An internal HSE review of the practice of implementation of Part 2 of the Act in 2016 confirmed anecdotal evidence that the approach to assessment of need was not consistent across the country. It was apparent that practice varied widely across the nine community health organisation areas, as well as within CHO areas. Although a range of guidance notes relating to the assessment of need processes were issued as far back as 2007, there was no nationally standardised or agreed operational approach or definition of an assessment of need.
In an effort to standardise procedures and facilitate timely assessments, the HSE developed a standard operating procedure, SOP, for assessments of need. The SOP was implemented for all assessment of need applications from January 2020. Assessment of need now comprises a preliminary team assessment that will determine a child’s needs and will identify initial interventions that will be required to meet these needs. The HSE respects the important principle that clinicians undertaking assessments of need should use their clinical judgment in carrying out these assessments based on the presenting needs of the child. However, it is critical to note that the practice of targeting resources exclusively towards assessments, sometimes taking up to 100 hours or more, is not the optimum use of valuable specialist resources. Relevant to this area, the HSE has established a new national clinical programme for people with disabilities, which is supporting clinicians in carrying out their work and directly involves people with lived experience in the design of clinical assessment and interventions. Related to this important development in the health sector, efforts are under way in terms of assessment of autism spectrum disorder, which now forms part of a dedicated service improvement programme aimed at developing supports and services for the autistic community.
These reforms are intended to alleviate the current situation whereby children in some parts of the country may wait a significant length of time before they can access an assessment. During this waiting period, they often have little or no access to intervention or support. This is unacceptable. The changes in the standard operating procedure, and particularly the new assessment format, will facilitate children with disabilities to access assessment in a more timely fashion. In essence, timely assessment along with ongoing intervention based on presenting need is a central principle guiding our work.
In conclusion, health policy, particularly the progressing disability services, PDS, project, has supported a move towards the provision of services based on need rather than diagnosis. This aligns with the UN Convention on the Rights of Persons with Disabilities. The HSE is committed to ensuring that children and young people with disabilities access equitable and timely intervention based on need rather than diagnosis. The Disability Act 2005 in its current format can create barriers in this regard as a result of its focus on assessment rather than intervention. Our priority is to ensure that people with disabilities can access both.