Dr. Alison Harnett:

I thank the committee for this opportunity to meet with it to discuss a rights-based approach in disability day services. The national federation is an umbrella body of not-for-profit organisations providing direct supports and services to people with intellectual disability and autism in Ireland. Across 54 organisations, our members support approximately 26,000 children and adults with intellectual disabilities and autism and their families, providing services and support throughout their life span.

Approximately two thirds of disability services are provided on behalf of the State by the voluntary sector so we warmly welcome the joint committee's invitation to our organisation to discuss a rights-based approach to day services. Ms Teresa Mallon, who is here from Saint John of God Community Services, is the chair of our assisted decision making reference group. She is one of the federation's representatives on the range of day services group that has been set up by the HSE. We will speak on the broad themes set out in my opening statement, which has been circulated to members and I am very happy to speak in more detail during the discussion. For the sake of brevity my opening statement will be shorter than the document that has been submitted.

Since the publication in 2012 of New Directions, there have been significant developments in the provision of day service supports. Disability day services have seen a sustained investment programme for school leavers over the past decade, the development of interim standards in 2016 and the implementation of a wide range of imaginative initiatives to support people with disabilities in how they access day service supports. Preparation is under way for the introduction of outcome-focused monitoring for interim standards for New Directions and supports.

As we move forward this year there are key contextual factors, including recent developments in policy and legislation, the recruitment landscape, departmental change, the funding environment and HSE restructuring, which will all have an important influence on the delivery and future development of day services and for wider integrated services that respond to the person holistically. Most importantly, the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD, provides us with the framework and impetus to collectively ensure a rights-based approach to services and supports.

The movement of disability services to the Department of Children, Equality, Disability, Integration and Youth and the publication of the disability action plan are concrete examples of the Government's commitment to reimagining disability services. The national federation believes that we all have a shared responsibility, together with State agencies and Departments, to reflect on disability services, listen closely to the views of people with lived experience, and progressively work together to ensure continuously evolving, rights-based, high-quality supports for people with disabilities.

Together, the shared focus on implementing the UNCRPD, the shift to a will and preference approach to decision-making and the context of the HSE restructuring provide a unique opportunity to restructure the funding systems underpinning service provision and enable a responsive approach to meeting the will and preference of people supported by services. This will require the tackling of barriers within the system that prevent individuals from being able to exercise their full rights in decision-making. Examples are the need for a pathway to retire from day services for those who wish to do so, the need for the development of more flexible supports, including at evenings and weekends, and sufficient staffing to enable more individualised approaches. A number of very helpful initiatives are on the horizon.

The HSE has established a national day services multidisciplinary review group, including representatives from our organisation, and we welcome this collaborative approach to finding solutions to the limited availability of multidisciplinary supports for people receiving day services. A national roadmap would greatly enhance delivery of multidisciplinary supports. Workforce planning and a cross-government approach that includes our sector in planning to address these barriers, including recruitment and retention issues, would be very welcome.

The disability capacity review highlighted important demographic changes. For example, there are increasing numbers of autistic people accessing disability services, many of whom have great needs requiring significant supports in the context of intellectual disability services. The capacity review reports that more than 50% of children accessing disability day services are autistic in comparison with 5% of adults accessing day services. In 2023, for the first time, more than 50% of school leavers entering day services were autistic. This is a significant demographic shift and demonstrates the need for strategic changes in planning, modelling, delivering and resourcing to ensure the most suitable models of support are developed which can meet the needs of the people presenting.

Changing needs have a significant impact on the way in which people access rights-based services. The extent of changing needs as people with intellectual disabilities age is not yet fully quantified but it is extremely important to guide planning. Co-ordinated and centralised data collection would enable accurate forecasting, forward planning and appropriate resources to upholding the rights of older adults using day services.

Meeting the needs of aging adults with intellectual disabilities and autism requires a newly structured and funded model of support. The funding model changed in 2015 for school leavers accessing day services to respond more closely to needs. However, many people entered day services prior to 2015 and the funding was based on older block-funded models. Many of these people are now ageing and require additional supports but there is no equitable standard pathway to find the support to meet these changing needs.

Unfortunately, there are significant barriers to achieving rights for people with intellectual disabilities, including in a range of key areas such as employment, education and transport. We really need an ambitious plan to address the high rate of unemployment among people with intellectual disabilities. Day services can play a part in addressing this inequality through providing support to the person to access employment alongside mainstream supports but we need to be resourced to do so. A cross-departmental response is required to address structural barriers to employment, including the development of enhanced pathways to work and making sure earnings thresholds and criteria for disability payments do not prohibit people from seeking work.

The programme for access to higher education will see a three-year pilot begin in September 2024 and ten higher education courses have been funded under the programme. We warmly welcome this initiative and hope that it is leads to ongoing access to higher education for people with intellectual disabilities. Some people will require ongoing support from day services to facilitate their access and success in education settings.

Our members strongly support the view that transition planning for school leavers should begin as early as 12 to 13 years of age, supporting young people and families to prepare for and have access to information on further and higher education and employment options for people, in addition to day services. Planning should be informed by demographic data and supported by multi-annual and capital investment to ensure adequate provision of the day services supports that are tailored to the need of people who begin accessing supports as school leavers. Such supports include, for instance, responding to the need for quiet environments for young autistic people. There is a critical need to move away from the current practice of primarily responding in emergency and crisis situations. We need to develop an ambitious vision for our young people, starting as early as possible.

When day services closed during the pandemic, routines were disrupted as individuals received their support in residential settings or were supported in the family home instead of attending day services. Many of my colleagues will speak to this during the meeting. While many people were delighted to return to disability day services, there are many who have expressed their will and preference to have their service delivered differently. A collaborative process for gathering evidence regarding will and preference in day services would ensure that those who are approaching older age are afforded the right to retire from a day service, if that is the person’s preference, and to develop flexible options to support them.

The ambitious and exciting opportunities provided by the disability action plan will ensure that more people with intellectual disabilities and autism in Ireland can access their rights. However, it is important to note that disability services are currently experiencing significant challenges in terms of the sustainability of resourcing and staffing. These are challenging their stability and their capacity to respond to the pressing needs and rights of people we support.

Disability services experienced a decade of underfunding following the global financial crisis. This has been compounded in recent years by inflationary pressures, a recruitment and retention crisis, growing unmet need and a lack of funding for changing needs as people age. Service providers are experiencing a crisis in sustaining quality, rights-based supports. Appropriate and sustainable resourcing is required across all aspects of service provision to fulfil our joint obligations set out under the UNCRPD.

We welcome the support of the Minister, the Department of Children, Equality, Disability, Integration and Youth and the HSE in collaboratively seeking pathways to address the challenges set out here and to ensure that the rights enshrined in the UNCRPD are upheld and made real in people’s lives. We welcome the focus of the committee today in examining how this can be achieved with particular regard to day services , and we thank it for inviting us to be a part of this discussion.