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Independent Living

Not much has changed in 20 years for people with disabilities though autonomy is creeping into the discourse

2016 marks another anniversary, the 20th anniversary of a ‘Strategy for Equality’. This was the report of the Commission on the Status of People with Disabilities. Their task was to establish what life was like for people with disabilities in Ireland and to prepare a roadmap to equality for people with disabilities. Before deciding on the appropriateness of any celebrations, it is timely to ask a question: has Ireland become more equal for people with disabilities?

The Commission took what it described at the time as “the unusual step” of consulting with people about their ‘lived’ experiences. It reported that people with disabilities experienced outdated social and economic policies and public attitudes, and pointed to “justifiable anger” felt by people with disabilities and their families. In the intervening years a multitude of laws and policies have been introduced but the question remains. Let me state it again: has Ireland become more equal for people with disabilities?

A cursory look at the Strategy and subsequent developments would suggest that quite a lot has been achieved on many of its recommendations. A National Disability Authority (NDA) has been established, a Disability Act was passed into law, a National Advocacy Service was established, and a swathe of legislation was brought into force on equality, assisted decision-making and education. However, if you dig a little deeper, there is a different story to be told. Most of these measures were poorly thought out or half-implemented.

The Disability Act 2005 created little by way of the rights-based legislation envisaged. Instead it provided a basic right to a person with disabilities to an assessment of need. However, no rights to services follow on from that assessment. Even this limited ‘right’ to an assessment has been only partly commenced and currently just caters for children.

The Strategy envisaged an independent advocate for people with disabilities. In 2007 the Citizens Information Act was passed. This provided for “Personal Advocates” with statutory and wide-ranging powers. Four years later a limited non-statutory service called the National Advocacy Service was commenced. A total of 35 advocates operate across a country where there are an estimated 600,000 people with disabilities.

The Education for People with Special Educational Needs Act 2004 has been stalled indefinitely. This means that children in mainstream schools struggle to get educational supports.

Successive Governments have failed to address the issue of the cost of disability. Many of the manifestos for the recent election used the term “cost of disability” to describe plans to give people an extra ten euro on their welfare payment. This is a regrettable approach. Cost of Disability demands than an increase in welfare payments. It requires a genuine recognition that having a disability can be expensive and moving to alleviate that additional expense.

The Strategy recommended that the Department of Environment develop a policy with “the right of people with disabilities to live as independently as possible” as its aim. In 2011 the ‘Congregated Settings’ report was published by the HSE, the agency responsible for care services. This was premised on moving people with disabilities back into the community. Progress on this ambition has been unacceptably poor. The Fine Gael manifesto for the recent election includes a target for 1/3 of residents to move back into the community by 2021, three years after the initial deadline for moving all residents. This is an acknowledgement that the policy has failed and that a generation of people will probably die in institutions.

The Strategy stated that ful lment through relationships and sexuality is a basic right. Since 1993, the criminal law has cast a legal shadow over sex and people with disabilities, particularly those with intellectual disabilities or mental illness. The law has provided an easy excuse to opt-out of providing sex education that would strengthen their ability to protect themselves and possibly open the door to a ful-filling, intimate relationship.

This is a bleak landscape, but it’s not all negative. We are beginning to win the ideological battle. Concepts of person-centredness, independent living and autonomy are creeping into the parlance of the body politic. The battle now must be to get our partially commenced legislation fully implemented. This will involve resources in many cases and a change in culture in others. Any marking of this 20th anniversary of the ‘Strategy for Equality’ must reflect that not much has changed and must pose the challenge to find the political will for equality. We have all the tools at our disposal.

Sarah Lennon

Sarah Lennon is Training and Development Of cer with Inclusion Ireland