Joint Committee on Disability Matters debate -
Wednesday, 3 Jul 2024

Apologies have been received from Deputy Ellis and Senator Clonan. Before we begin, I warmly welcome the family of Deputy Seán Canney to the Gallery. They will be able to keep a close eye on the proceedings and the work we do. Seán is a huge contributor to our work on the Committee on Disability Matters. He is very dedicated and contributes very positively to the work we are trying to do. They are very welcome and I hope they enjoy their trip to Leinster House.

The purpose of today's meeting is to discuss how we enable community inclusion for people with disabilities. On behalf of the committee, I welcome the representatives from the Disability Equality Specialist Support Agency, Ms Alice Griffin, manager, and Mr. Brian Miller, company secretary.

Witnesses are reminded of the long-standing parliamentary practice that they should not comment on, criticise or make charges against any person or entity outside the House in such a way as to make him, her or it identifiable or otherwise engage in speech that might be regarded as damaging to the good name of the person or entity. Therefore, if witnesses' statements are potentially defamatory in respect of an identifiable person or entity, I will direct them to discontinue their remarks and it is imperative that they do so.

Members are reminded of the same parliamentary practice. Those who are contributing remotely must be physically present or within the confines of Leinster House to contribute to a public meeting.

I invite Ms Griffin to make her opening remarks.

The Disability Equality Specialist Support Agency, DESSA, welcomes the opportunity to attend. DESSA is a national community development organisation which was established in 2001 to work within anti-poverty and social inclusion programmes to ensure they are inclusive of disabled people. Our mission is to promote the social inclusion of disabled people and their families at community level by providing strategic capacity-building supports, advocacy, training and information to the community and voluntary sector and to disabled people and families.

By inclusion, I mean the full and active presence, participation and contribution of disabled people in settings and spaces of their choice alongside their non-disabled peers. Disabled people are first and foremost members of their local communities and given their lived experience and expertise, have much to contribute to community life.

We are committed to supporting the creation of non-disabling communities by engaging with a range of civil society organisations: local development companies; family resource centres; local access groups; advocacy organisations; and disabled persons’ organisations, DPOs. While DESSA is not a DPO, we work closely with the DPO Network, an alliance of five national DPOs in supporting the full realisation of the UN Convention on the Rights of Persons with Disabilities, CRPD.

Over the years we have developed a range of innovative projects. In 2023 we launched an e-learning course that provides an introduction to disability equality, inclusion and human rights. The aim of this course is to support civil society organisations to develop their understanding of disability as an equality and human rights issue, which is an essential step in improving inclusion in our communities. I am happy to report that the course was one of the initiatives honoured at TUSLA’s excellence awards scheme in 2024.

Today I will be speaking about two areas of our work. The first is the empowering parents programme and the second is a project on community inclusion, capacity and connection. This is a community development approach to local area co-ordination, LAC. Before I do this, I want to say something about how we work. We understand community development to be a way of working that creates opportunities for those who experience exclusion to have their voices heard, to participate in decisions concerning them and to actively engage in social change. It is an approach that promotes empowerment and self-determination and is the means to enhancing the inclusion of disabled people who have historically been disempowered and excluded. At the heart of our work is the belief that disabled people are citizens with rights, not objects of charity. The principles that underpin our work; human rights, social justice and equality, inclusion, empowerment and respect are informed by the CRPD. Our role is to empower, raise awareness, connect people, and build networks of, and between, disabled people and community.

The first piece of work I want to speak about is the DESSA empowering parents programme. According to the UN Committee on the Rights of Persons with Disabilities, the role of parents should be to assist and empower persons with disabilities to have a voice and take full control of their lives. The programme supports this. Developed in 2007, this is a capacity-building programme supporting parents to develop practical advocacy skills so that they can champion the rights of their children. More importantly, it supports parents to move beyond an understanding of disability that is rooted in tragedy, medical narratives, and paternalism. Over an eight-week period, parents are encouraged to think differently about their child’s impairment and to see disability from a human rights' perspective in accordance with the social model of disability. It supports parents to effectively communicate and engage with schools and disability services and to understand and influence policy. The policy piece is important. Parents need support to actively engage, develop and inform State policies on issues related to their children. Many of the parents we work with are not linked to specific advocacy groups and so, do not get to hear about or have input into relevant State consultations or policy arenas such as the development of the national disability strategy, for example.

Parent advocacy groups are not DPOs but they are recognised by the CRPD committee as having a role to play, based on their knowledge and experience, in the realisation of their children’s rights. To date, 2,400 parents, grandparents and guardians have participated in the empowering parents programme and close to 10,000 families have been impacted by our advocacy and family support work since 2007. We continue to deliver this programme across the country, supporting parents to develop their advocacy skills and actively engage and partner with disability services and schools to create the best possible outcomes for their children.

The second project area of work I want to speak about is the community inclusion, capacity and connection project. This is our interpretation of LAC. The project was developed by DESSA in 2015 and was delivered in County Leitrim in collaboration with a number of civil-society organisations which we recognised as having a pivotal role to play in advancing the active participation and inclusion of disabled people within their local communities. These included Leitrim Local Development Company; Leitrim Disability Equality Network, a local DPO; Down Syndrome Ireland and its local branch; North Connacht Youth Services; Breffni Family Resource Centre and HSE-funded disability services. The DESSA project was one of five pilot projects funded through the Dormant Accounts Fund over an 18-month period from January 2016 to June 2017.

The LAC model was originally developed in Australia in the late 1980s and has since been replicated in other countries. It is a way of working with disabled people and families by reinforcing natural and community supports that are flexible and individualised and is underpinned by the principles of self-determination, citizenship and rights, and inclusion. The LAC model entails a local co-ordinator working with a caseload of individuals in a small geographical area, across impairment and with all age groups. The role of the LAC co-ordinator is to enable and support people to identify and attain personal advocacy goals, develop their self-advocacy skills and build supportive networks in the community. The co-ordinator brings together elements of personal advocacy; family support; community development; capacity building; and case management into one role.

The vision for the DESSA LAC model was that disabled people and their families would determine their own needs and goals, become leaders, decision makers and advocates in their local communities and live happy and fulfilling lives. We recognise that disabled people have rights, including the right to access and enjoy community life, like all other community members.

The work was about enabling people to move beyond having a presence in the community to actively participating, contributing and developing leadership and partnership roles. It was also about building the capacity of the local community infrastructure to be inclusive and welcoming of diversity. The Dessa LAC model was a huge success, with 52 individuals being supported to identify and achieve personal goals. Some of the individuals supported went on to enroll in the access and foundation course at third level at St. Angela’s College, Sligo, while others were elected on to Leitrim public participation network and the local disability equality network. Some 40 community development organisations received training in disability competency, equality and inclusion, and nine parents of LAC participants undertook the DESSA empowering parents programme. Disability inclusion became mainstreamed in local and community development agencies in Leitrim, which led to more disabled people becoming volunteers, and training as youth leaders. Several individuals engaged with, and informed Leitrim Local Link on transport access issues.

Some LAC participants gave mentoring support to other disabled people, so there was a ripple effect, which led to an increase in the overall number of disabled people in Leitrim engaged in the mainstream. There was a marked increase in networking and collaboration between disability services and local community structures, which also led to an increase in disabled people participating in mainstream activities. Unfortunately, the project ended after the pilot phase. However, the learning and good practice can and should be used today. The learning points include the following. A community development approach to LAC, involving key agencies across community and disability services, in partnership with DPOs, is the most effective and sustainable way of enabling disabled people to have good lives. The active involvement of DPOs in co-creating LAC is essential for it to be successful and aligned with the CRPD. LAC requires the intentional development of strong partnerships and collaboration across sectors. LAC must be rooted in mainstream community within mainstream organisations. Community development organisations, in partnership with DPOs, are a valuable role model for mainstreaming, the realisation of rights and are animators for social change.

The effective implementation of State disability policy does not happen in isolation. Community inclusion does not happen naturally; it requires a competent and committed community and voluntary sector that is resourced, skilled and accountable.

Local area co-ordination works. It is an effective model for creating real opportunities for disabled people to be part of inclusive communities and for building local community capacity. It is time to reignite the DESSA LAC model across the country.

I thank Deputy Tully for allowing me to go first. With some of the family here marking my card today, I had better ensure that I do things right. I welcome them all here.

I thank Ms Griffin and Mr. Miller for attending and for their very interesting presentation on what the LAC programme has achieved through a small pilot scheme. They said the scheme is not operational now, unfortunately, and that now is the time for it to be rolled out across the country. Who funded the pilot scheme? How long did it run for? If we were to run it across the country, how much would it cost and what Department should be heading it up?

For over four years, members of this committee have been discussing disability issues. The guests have shown us a model that benefits families, parents, communities and, most of all, people with disabilities. I have often said that I am sometimes not very proud of what politicians do to help people with disabilities. The programme seems to be a key enabler for people with disabilities and their families to become more engaged and involved. The guests said people became members of the PPNs and so on. A natural progression would be to see people going for election to county councils, the Dáil and Seanad. It is about have more representatives. There was a retrograde step in Galway County Council this year in that Gabe Cronnolly, an amputee who had been a councillor for two terms, did not run for election again, for the basic reason that he was not allowed the supports he needed to assist with his disability. He decided he was giving up after ten years, which was sad.

Could the guests tell me about the costs and the funding source? Is it possible to roll out the scheme across the country?

The local authority areas are a possibility. Regardless of how it is rolled out, it is important that it be based in mainstream communities, with community development organisations leading out in partnership with DPOs. The success of our project was that it was led by the local development company, ourselves and the local DPO rather than a local authority or other provider. That it was based in a community development organisation was key.

DESSA was established in 2001 by the then Department of Social Welfare. At that time, the Department had considerable funding to develop local community development projects to build up communities and to develop economic capability in local communities. In 2001, the Department wanted a specialist support agency to ensure the local community development projects would be inclusive of people with disabilities. DESSA was established with a fund from the Department, and that is how it commenced. Many years were devoted to working with community development projects under area partnerships to ensure they were inclusive. That is the origin of DESSA. We did apply for and get funding for other short-term funding projects, such as the LAC project. We engaged on that because we believed it was moving towards what DESSA was trying to do, which was, on the one hand, to make the mainstream services in any local community inclusive. We also thought that LAC would provide a real demonstration project, with a local co-ordinator, local activity and engagement with different community projects, that would open doors and include people with disabilities. What has happened is that the UNCRPD has changed the game in that it has strengthened the framework through which all of us now have to consider disability and inclusion. It has provided pressure and a structure to ensure we are all trying to include and consider what is involved in it. The aim of the mainstream policies for people with disabilities, such as New Directions, was to change the disability provision system to move towards the community. What DESSA was trying to do was prepare the community for that inclusion.

May I add to that? In 2001, we were initially part of the community development programme. That comprised community development projects, CDPs, and family resource centres, FRCs. At some point, that programme was finished and the FRCs became part of the FRC programme under the Family Support Agency. We went with them there. We were core funded under the programme and also core funded under the local and community development programme, which in turn became the local development and social inclusion programme, with partnership companies.

It is to build capacity of the community and development sector primarily. That is why we were established. The community and development organisations in the community and development sector have a role and responsibility regarding social inclusion. Our job is to bring the technical capacity to organisations in order for them to understand what we mean by disability, to identify what the barriers within their organisations or local communities are and how to address those barriers that prevent inclusion. Over the years we have produced and published guidance documents on inclusive playground design and accessible community facilities. We developed and published a social inclusion charter for family resource centres to sign up to in the context of the UNCRPD. It is very much about building the capacity of organisations that have a social inclusion remit to be inclusive of disabled people and their families.

We work in partnership as much as possible, whether they are families and parents who come through the family resource centre or the children and young people's services committee structure, which is another body we would partner quite closely with. The people we work with come from a variety of sources. In particular, the family resource centres are an entity we work closely with.

If I may add, the family resource centres were a community resource to support families. We worked with them initially to make sure they included people with disabilities. This led to the development of the empowering parents programme because, and I am sure the committee members have heard it from other organisations, many parents of a child or adult with a disability often struggle through many years of trying to obtain, find out about and access programmes or supports. One of the things the members will hear from parents many times is that parents were afraid to ask a question, that they were afraid to question what service they were getting because they may might themselves excluded or left out. The empowering parents programme was a short one. During the Covid times, we delivered it through Zoom. It was to provide parents with a sense that their child is a citizen of the State and has rights similar to everybody else and that their right to engage in a full life in a community is the same right as somebody going to third level or Trinity College. The empowering parents programme came out of our initial contact with the family resource centres and has now become a powerful tool to give parents a sense of their rights. The UNCRPD reinforces that again and allows a change of attitude from parents accepting or pleading for services to saying their children have a right.

I apologise that I missed some of the presentation. I had an education committee meeting at the same time and I am trying to double-job. The work DESSA does is very interesting. From my understanding, it is mainly in County Leitrim, but that some projects have been rolled out in other places. Am I right in that?

The fact that the PPN comes through the local authority is important. Obviously, local authorities have a quota in terms of employment. I imagine what DESSA helps to do is to bridge the gap there as well, which is important. DESSA is probably familiar with our Oireachtas Work Learning, OWL, programme, and there are always some young people from Kildare involved because it is done in collaboration with KARE and WALK. I know one young man from it who would have been able to get a job in Dublin afterwards but he hated the travel up to Dublin. We have to understand that. He is finding it difficult to get a job. Sometimes we have to remind our local authorities of their responsibilities there.

I completely get DESSA's mission. I imagine, because it is from a Department, that DESSA cannot apply for and receive funding from Rethink Ireland because it takes really good pilot projects and gives funding to roll them out. DESSA is probably in a situation whereby even though it was an excellent pilot project, it was not continued, and the continuation of it and the roll-out needs to be done by the State. Am I correct in some of that?

In terms of the work DESSA does, we heard previously from social farming and different types of social employment schemes. I refer to the experience of one social farm led by Mr. Val Cross in Rathangan, where I am from. It is tremendous to hear how those involved would speak about the involvement, from a farmer point of view, let alone those who get involved in it. Has DESSA had any involvement with any schemes like that?

We do have a wonderful project in Kildare with the county council and County Kildare Access Network, CKAN. The project works with transition year students to introduce them to and educate them on disability and equality and supports, to enable them to conduct access audits within their local schools or community and present them to the local authority. To date, we have worked with more than 70 students in three schools. It has been hugely successful in supporting the creation of non-disabling communities and working with local access groups to ensure the barriers identified in local towns and villages have been considered and either removed or highlighted to the local authority.

I believe Ms Claire Kinneavy is involved with that project. She is a tremendous champion in that area and told me a little about it. She is always progressing, doing things and is an incredible advocate. It is very interesting to hear what the witnesses have said and we can clearly see that there is a role to roll-out the pilot project. We will do what we can, will we not, Chair?

Absolutely. A lot of it is empowering parents in having a step, signpost or a way for people because it is really important. As Mr. Miller said in his commentary, the challenges are there for families on an ongoing basis. Some of the time, there are great initiatives. The witnesses' concept is highly innovative, but it is very down to earth and on the ground. The challenge I see is that the State never really embraces these initiatives. If we look at the disability services that have developed over the past 50 years, certainly from the 1960s on - I do not want to depress myself by going into those prior to that - it has been community-led. It has been section 39 organisations that have set it up and developed it. In commentary, we have always been very critical of the State in terms of the education and health services being farmed out to the church. In recent times, however, we have allowed the voluntary community organisations and people who have good initiatives like the witnesses to develop and lead the way for the State to do the right thing, which should ultimately be the State's responsibility. The United Nations Convention on the Rights of Persons with Disabilities, UNCRPD, comes in now as an international agreement. This is the real challenge for us, however. We have been sitting as a committee for the past four years and there have been different levels on which we have been able to get advances on different projects and initiatives. We have certainly been able to bring the spotlight to the unmet need in our communities for people with disabilities and their families and communities.

This is the real question I have, however. The witnesses said that it was laid before the Department of Health in 2017. It just disappeared into the ether. How do we as a State or we as a committee and as politicians who are charged with keeping the various arms of the State accountable look to see that these reports or initiatives are done, and why they are not in practice rather than the pilots? I do not think the witnesses can see. It is really about making lines and showing the spotlight but should not be. The UNCRPD and the Constitution talk about cherishing everybody equally, but we are still not doing that. When the witnesses furnished their report, what was the feedback, if any, from anybody?

I thank the witnesses very much for appearing before the committee. We really appreciate it. I thank them for the work they do. It is greatly appreciated. Our job is now to try to ensure that it does not veer off the radar completely. I thank the members and our team. We will adjourn until next week at 5 o'clock.