Crises will be the norm if we don’t plan for disability services

Paddy Connolly highlights how Ireland has not ratified the UN convention on rights of people with disabilities, and fails to plan how it will provide for vulnerable people in the future

IT has finally been acknowledged by the minister of state for disabilities, Finian McGrath, that his target to have the UN Convention on the Rights of Persons with Disabilities (UNCRPD) ratified by the end of 2016 will not come to pass, citing “blockages within the legislative process”.

Ireland will now lose a race against time to prevent us marking the ignominious 10-year anniversary of signing the convention in March 2007 without ratifying it. Ireland also remains the last country in the European Union that has not yet ratified the convention.

This is borders on a national embarrassment and is a deeply worrying development for persons with disabilities who, as the Irish Human Rights and Equality Commission warned recently, are currently at risk of being further excluded from decisions, which impact their daily lives, from employment to voting.

The convention sets out in clear terms that the rights of persons with disabilities are human rights and these rights apply equally to persons with disabilities; the fact that the UNCRPD will not be ratified this year shows that people with disabilities in Ireland are not a priority for this Government.

All of the articles in the UNCRPD are important, but one of the essential ones is Article 19, which recognises the equal right of all persons with disabilities to live in the community requiring states to take “effective and appropriate” measures to achieve this end and to ensure that persons with disabilities choose where they live, have access to services to support inclusion in the community and to the same services that the general population receive responsive to their needs.

After a fortnight where there has been much attention in the media about the experiences of family carers, we cannot say that Ireland is ready to ensure that people have supported lives in the community.

For many people, making this move involves a transition from institutional care or from a family home and sometimes the transition is in a crisis situation following a family death.

Transitions are hard and we know that often families, and sometimes individuals themselves, are not ready for this transition or lack confidence in the process. Research demonstrates that families are often concerned that people — particularly those with complex support needs — are “invisible” in current policy and service provision.

The formation of the last government included not only a minister of state with responsibility for disabilities, but also the Programme for a Partnership Government, which included several commitments, in particular that supports were needed at “key transition points — going to school, progressing to further training or education, or moving into a new home”.

It is abundantly clear that it is these transition points that cause the most anxiety, or that it is these transitions that are not made until there is a crisis.

Let’s be clear about one thing — everybody can live in the community, regardless of the support needs. All international evidence supports this view. But people can only live good lives with the correct supports.

Support comes in many guises and should be personal and individualised. It may include the aspects of the HSE Service Plan 2017 that Mr McGrath tweeted that he was “sweating over”, such as respite, day places, and personal assistant hours.

HSE-related services provide an opportunity for people who are transitioning or already living in the community, but we must also include personalised budgets, assisted decision-making, supported living arrangements, deinstitutionalisation, and independent advocacy to promote inclusion of persons with disabilities in their community.

Some emerging Irish research shows that current service provision is overly concerned with avoidance of risk for the person and less towards the inclusion of that person in their community.

Inclusion Ireland is aware, through our advocacy work, that there are serious gaps in the supports provided to people with complex needs and their families at all stages of the lifespan and the research backs this up. The research also points to the need for more effective planning for the future of people with disabilities.

Amongst the various comments from family members over the last fortnight, it has been the ‘transitions’ that have stood out and it is clear that transitions are often precipitated by crises. This is not good enough.

If Ireland is committed to the UNCRPD — which is now clearly in question — these transitions must be met proactively and we must take “effective and appropriate” measures. This involves a holistic approach to services — not just the HSE and Department of Health.

Mr McGrath himself has a role across three government departments, namely Social Protection, Justice and Equality, and Health. No other minister has a brief with this level of breadth.

He must appoint a dedicated official to review and plan for future services for people with complex needs. This official must be cross-departmental and co-ordinate a lifelong, whole-of-family approach, otherwise we will transition from crisis to crisis.

Paddy Connolly is CEO of Inclusion Ireland, the national association for persons with an intellectual disability


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