Taking over as CEO of Inclusion Ireland has occurred at a time of cost constraints affecting most voluntary organizations. What impact will this have for defining priorities?
There have been cutbacks across the voluntary sector, and the focus of Inclusion Ireland is the impact of these cuts on people with an intellectual disability and their families. While this has had an adverse impact on many areas, the challenge for Inclusion Ireland is not just what cuts are happening at present, but also what the future vision is for people with an intellectual disability and how we can work to achieve that, despite ongoing funding restraints. In many ways the cuts affecting people at present amplify the need for Inclusion Ireland as a central voice to advocate for the rights of people with an intellectual disability and their families. Unfortunately, the language of cuts and austerity is the first thing to trip off the lips of policy makers, but the rights of people with disabilities and their families are not diminished by a recession. It is important that Inclusion Ireland, in partnership with others (particularly people with disabilities and their families), remains focused on the goal of achieving the supports that people with disabilities need to live the life they choose with equal opportunities to all others.
There are many voluntary disability organisations in the country. Why is Inclusion Ireland different?
I am not aware of any other organisation that has a fifty year history of advocating for the rights of people with an intellectual disability and their families. Inclusion Ireland, more than any other organization, has led out publicly on critical issues such as modern capacity law and independent inspection of disability services. But it is not our difference that is important, rather the belief system of the organization—one that puts the rights of people with a disability and their families at the centre of everything it does. Inclusion Ireland is only relevant as long as families and people with an intellectual disability feel it is representing them, that they have its support and that they are not isolated in trying to secure the supports they need, whether for themselves as people with an intellectual disability or as parents and siblings advocating for their family members.
What are the challenges for retaining an involved, inclusive membership, given Inclusion’s broad remit?
Inclusion Ireland’s central vision is that of people with an intellectual disability living and participating in the community with equal rights as citizens, to live the life of their choice to their fullest potential. While this vision provides a uniting force under which our membership stands, it is true that we cannot, nor should we, try to represent the broad spectrum of interests in the disability arena. There are people and groups, and I’m thinking of parents and family members, self-advocates, adults with an intellectual disability not aligned to self-advocacy groups etc, who do not enjoy the resources, access to policy makers and level of influence that others enjoy. If Inclusion Ireland is to be relevant, to offer something unique, to achieve real change and improvement in the lives of people with a disability—and, remember, that is what it is ultimately about—then these are the people Inclusion Ireland has to have at the centre of its work and to be most vociferous in supporting and representing.
What are the challenges for achieving active national member participation to achieve the aims and objectives of Inclusion Ireland?
There is enormous drive, commitment, passion and ability amongst people with intellectual disabilities and their family members; there is palpable anger at the daily struggles people have to undertake to achieve the basic supports they need and have a right to. I see enormous potential for Inclusion Ireland to partner with people to harness that energy and, to bring us back to your first question, to ensure not only that there are not further cuts but, more importantly, to insist and ensure that people with an intellectual disability and parents are at the centre of the planned change programme—not just represented on various committees in a token fashion, but resourced to be at the table as drivers of policy and service changes. Specifically, an early priority for me is to ensure that Inclusion Ireland is a resource, in terms of information and coordination, to parents and parent groups. To this end, I have in recent weeks convened meetings with a number of parents in Galway and Dublin, and will in the comings weeks be holding similar meetings in Cork and the Northwest, to better understand how we can do more for parents. Central to this is the method of communication with parents. Of equal importance is how Inclusion Ireland works with people with an intellectual disability to ensure their collective voice is heard and, while we are involved in initiating the emergence of a National Self-Advocacy Network, we are also anxious to promote the emergence of self-advocacy groups around the country.
The absence of national standards open to scrutiny in intellectual disability services has been a concern for Inclusion Ireland for a very long time, but especially in the last decade. How can Inclusion Ireland contribute to the implementation of national standards?
Inclusion Ireland will continue to advocate for standards until the Minister for Health announces the date for their implementation, which we understand will be mid-2013. But the standards are only one element of a robust system of checks and balances in the provision of a rights-based person-centred national disability services. Other critical elements include moving away from exchequer funding being delivered in block grants to service providers towards individualised funding, the availability of a menu of supports which provide real choice (not just a reconfiguration of what’s already on offer), and a broad spectrum of advocacy provision which includes the present provision of representative advocacy, but also state-wide self-advocacy groups and more. Also critical to a robust and safe disability programme is that citizens are at the centre of planning and evaluating that system. We have a long way to go to ensuring parents and people with an intellectual disability are viewed as genuine partners and placed at the centre of the change programme. So to answer: yes, we will continue to push for a robust inspection programme, but we only see that as a small, albeit important, element of a wider change agenda.
How will your previous employment achievements inform your role as CEO of Inclusion Ireland?
I have been involved in community organising for over twenty years and certain themes are ever.present; one of the strongest of these is the lack of genuine consultation between statutory agencies and citizens. Another is how good Ireland is at producing policy documents, but how poor we are at implementing them. I hope to bring what I have learnt about getting people together to act collectively to achieve real change. To work for change requires an analysis of what needs to change, and an understanding of how society and the way it distributes resources sustains inequality. I had a meeting recently with a group of parents with children with a disability—some had adult children others younger children—what was most disturbing about this meeting was how the younger parents were going through the same battles for supports and services as the parents who had being advocating for two or more decades. While it is true to say that the government significantly increased the amount invested in disability services during the past decade, it is also true that they failed abysmally to reform how services were delivered; they failed (and continue to fail) to put the citizen at the centre. I have been involved in a number of campaigns that sought to ensure that communities and individuals were consulted as equals in the design and implementation of policy programmes and this will be important to Inclusion Ireland going forward.
Increasingly, the number of parents with an intellectual fisability are the subject of childcare proceedings. Has Inclusion a role to support parents with a disability as parents?
Unfortunately, there are occasions when children will be removed to the care of state for their own welfare and protection. This is the case for children of all parents. However, as international studies have found, parents with an intellectual disability are up to 50 times more likely to have their children removed to state care than other parents. Going to court can be extremely daunting and intimidating. Access to an independent advocate has been shown to remove many of the barriers faced by parents with intellectual disability. Inclusion Ireland has provided specialist advocacy support to parents with an intellectual disability to enable them to defend themselves in court. The number of requests for this support has increased significantly in recent years.
It is also our experience that parents with an intellectual disability have received inadequate support in their parenting before proceedings are initiated. Inclusion Ireland has advocated for the introduction of policies and programmes that will support parents with an intellectual disability in their parenting role.
In a broader context, Inclusion Ireland continues to advocate for the ratification of the UN Convention on the Rights of Persons with Disabilities. The Convention reaffirms the right of people with a disability in all matters relating to marriage, family, parenthood and relationships, on an equal basis with others. It says that governments should provide appropriate assistance to people with a disability in the performance of their child rearing responsibilities.
Would you like to share with readers three priorities for Inclusion Ireland over the next two years?
- To promote the right of people with an intellectual disability to advocate for themselves by building a national network of self-advocacy groups around Ireland and by supporting the emergence of an independent national network of self-advocates.
- To work in partnership with parents and parent groups/associations to build a unified, cohesive and strong parents’ voice at national level.
- To campaign for the full implementation of the National Disability Strategy and against further cuts in disability expenditure.