Mr. Michael Hennessy:

I thank the committee for this opportunity to meet. The National Federation of Voluntary Service Providers: Supporting People with Intellectual Disability is a national umbrella body of not-for-profit organisations providing direct supports and services to people with intellectual disability. Across 57 organisations, our members support approximately 26,000 children and adults with intellectual disabilities and their families, providing

services and supports throughout the lifespan.

Our member organisations have community presence and connections across cities, towns and villages throughout the country. As two thirds of disability services are provided on behalf of the State by

the voluntary sector, we welcome the joint committee’s invitation to us, as not-for-profit service providers, in the context of this debate. We welcome the focus of the Joint Committee on Disability Matters on the key area of reimagining the future for disability services to provide a more rights-based approach. The opportunity to listen to the lived experience of people with a disability and their families that has taken place at recent meetings of the committee has been vitally important, and their testimonies have been powerful and compelling.

A key pillar of our work in 2021 has been to examine the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD, in great detail. We have brought together online our members from around the country to look at the status of the implementation of the UNCRPD, working through the Articles one by one, reflecting on the State report and thinking about how to implement a more rights-focused approach to service provision. Our board will continue this focus in 2022.

Following these workshops with our members, we have made a number of key submissions that reflect our views on the UNCRPD. These include our response to the draft initial State report, our participation in the development of the new housing strategy and our recent submission to the disability action plan 2022 - 2025.

As time is short for this opening statement, there are a couple of interlinked themes we wish to highlight. These include the need for sustained investment with multi-annual planning to address waiting lists in children’s and adult’s services, the requirement for new models of service delivery and improved cross-departmental working with a whole-of-government approach to the UNCRPD.

The disability capacity review has set out a very significant level of unmet need for disability services. These figures confirm the deficits described in successive pre-budget submissions by a range of organisations, ourselves included. Behind the substantial figures in the capacity review are individuals and families who are struggling to access the kinds of supports envisaged in the UNCRPD. It will take a number of years of sustained investment to address this level of unmet need. We are acutely aware of the unmet need in children’s services and how this impacts on children and families. We believe that the urgent completion of the reconfiguration of children’s services and a sustained multi-annual programme of investment are required to address this unmet need.

The provision of a lifelong diagnosis of disability provides for the potential to plan early and provide the resourcing to support people well. However, current budget and planning cycles are annual in nature. These result in crisis-driven and emergency responses that do not result in the best outcomes for individuals, cause enormous uncertainty for families and are not best value for State funding. A multi-annual planning and investment framework is required to improve this.

Supports should be planned and implemented at the levels required by individuals to support their independence in line with Article 19. This requires a range of service delivery models that respect the individual’s independence. These include personal assistance, home support, supported independent living and, for some with higher support needs, full-time residential care. These supports need to be put in place earlier, rather than in a crisis when a family carer becomes ill or passes away.

Article 19 of the UNCRPD focuses on the right to live independently with appropriate supports and in order for this to be achieved it will be necessary to provide the integration of housing together with supports. This will require substantial collaboration across the Department of Housing, Local Government and Heritage, the Department of Health, the Department of Children, Equality, Disability, Integration and Youth and other relevant Departments, including the Department Social Protection and the Department of Transport. There is an opportunity to put this in place through the new housing strategy and we are engaged with the process of consultation that is involved in developing that strategy.

Articles 29 and 30 address the right of a person with a disability to participate in public and cultural life. Supporting these rights is a whole-of-government challenge. The UNCRPD needs to be addressed across a range of Government Departments. Where there is a lack of clarity in terms of responsibility of Departments, it is the person - the citizen - who often falls between the stools and is left without support. We have highlighted in our submissions a range of areas including supported employment, housing and supports and transition planning for young people, where there is a need for improved collaborative working and a clear delineation of departmental responsibility.

At the individual organisation level, members of the federation have been working to transform services and supports with a number of initiatives. These include the development of individualised supports in day services under the new directions programme; collaborative work with local authorities to deliver housing and supports; supporting people to move from congregated settings to the community – there has been considerable progress but the work continues; and the establishment of successful programmes that demonstrate the value of transition planning and tailored employment supports.

At the national level, the federation has had a focus for many years on developing initiatives that support innovation. We are happy to share details of these with the committee. Some of them include our next steps community of practice and the immersion programme; the Informing Families evidence-based best practice guidance; the person-led research of the Inclusive Research Network; and our recent work with the older persons working group. The learning from these organisational and national initiatives can provide impetus for further development of strongly individualised, person-centred and person driven approaches.

The collaborative approach undertaken by services together with the HSE during the Covid-19 pandemic provides fertile ground for continued partnership in developing services into the future. We attach considerable importance to the work being undertaken to address challenges highlighted in the Catherine Day report and through the work of the health dialogue forum chaired by Mr. Peter Cassells. Our services are ready to work with the key stakeholders to develop and reimagine services and supports for the future, to ensure the people we support can access their rights under the UNCRPD and live life to their full potential as valued members of their communities.

I thank the committee for the opportunity to meet with it on this topic. We are happy to take questions from members.