A rights based approach is long overdue

In medieval Ireland, social status was very important but, in some ways, society was also remarkably inclusive then, writes Denis Doherty.

Denis Doherty
Denis Doherty

Under Brehon law, a person with a disability caused by mental illness or intellectual disability was known as a ‘duine le Dia’ – a person with God – and was afforded rights and protection. Every community and every extended family had a duty of care towards those who were ‘daoine le Dia’. Brehon law even contained a prescription of how to treat mental illness. During that period also, the Christian monasteries throughout Ireland provided care for the sick.

Modern Ireland fares badly by comparison. Needs and services are dealt with on, what is essentially, a grace and favor basis. In 2017,the care and support needs of a middle-aged woman with an intellectual disability and her elderly parents, one of whom has dementia, was responded to by a statement that others with ‘a higher medical priority’ took precedence. Why should medical considerations determine entitlement to accommodation and family support? That type of muddled response to a cry for help is stressful and frustrating for applicants for services and service providers.

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Such a narrow and inappropriate response is very far removed from a rights based approach that would respect the wishes of citizens who happen to have a disability, in relation to how they live their lives and pursue their ambitions.

In Ireland, the incidence of congenital disabilities is higher than in other European countries where so called ‘therapeutic abortion’ is practised. Recognition of that reality ought to be reflected in the funding of health, care and support services based on assessed needs here.

A person with a disability caused by mental illness or intellectual disability was known as a ‘duine le Dia’ – a person with God – and was afforded rights and protection.

That is not what happens. Services for people with disabilities have been severely hit during the recession. There have been reductions in funding due to ‘the cuts’; the government embargo on recruiting and replacing staff; failure to fund the measures necessary to transition from institutional care to care in the community and failure to invest in achieving the standards of accommodation and care specified by HIQA, the Regulator.

Many of the children who were the first users of community-based services have progressed to adult non-residential services in the community and some have developed dependencies that require supports that have not been planned for let alone provided. Far too often, it’s a case of ‘take what you get, and don’t get upset’ and that’s a far cry from a rights based approach.

Much of the mismatch between the services that are available and those that are needed result from the historical over reliance on institutional care beginning with the mental hospitals and County Homes to residential homes for persons with intellectual, physical, hearing and vision disabilities.

In Ireland, the incidence of congenital disabilities is higher than in other European countries where so called ‘therapeutic abortion’ is practised.

If the opportunity arose to design services based on need and entitlement, people with disabilities would be involved in their design and oversight. People with disabilities have medical needs, some of which would justify special service provision, the approach to which would be similar to how services for other care groups are organised and delivered. People with disabilities would be treated as individuals; many with long term needs unique to them but similar to others and would be served in ways best suited to their needs. Why not acknowledge now how little meaningful involvement of service users there has been to date and take steps immediately to put that right?

The emphasis on health and care services can be detrimental to people with disabilities whose needs involve little or no health or other care over and above the general population. A system that is overwhelmed due to underfunding, staff shortages and facilities that are unfit for purpose is not going to be able to meet the wishes of individuals around how they wish to live their lives and realise their ambitions.

Mobility issues loom large when public transport is inadequate resulting in restricting access to education, work, services and education for people who do not have private transport. Support services need to be much more dependable and much more plentiful than they have been in recent years here. The built environment is unfriendly to other than fully ’able bodied’ people. Building regulations satisfy the agendae of property developers to the detriment of many users of the property. Good design is arguably no more costly than bad design and benefits everyone. Universal design benefits everyone but benefits people with disabilities, people with temporary mobility problems and the elderly in particular.

In 2007, Ireland signed the UN Convention on the Rights of Persons with Disabilities. Ten years on, Ireland is the only signatory that has not ratified the Convention. A spokesperson for the Department of Justice said recently, and not unreasonably, that the State must enact new legislation and amend existing legislation to ensure that the obligations of the convention will be met when it comes into force. That was a known consequence of signing the convention a decade ago, so why has Ireland failed to measure up? The consequences of enacting the legislation took precedence over the rights of people with disabilities.

The hypocrisy involved in signing a UN convention and then not ratifying it for over a decade would not be tolerated by most other sectors in the State. The only upside of the long delay experienced is that it affords the Government an opportunity to replace the existing arrangements that do not serve many people with disabilities well and replace them with arrangements that are based and funded on assessed need; that respect the uniqueness of individuals; that affords them rights and a meaningful say in how their needs are met; that mainstreams services for people with disabilities and enables them to avail of the entitlements of all other citizens and as a welcome consequence moves Ireland off the bottom of the league table and, over time, regains the respect our forefathers earned and retained for centuries.