The debate over the budget both in Leinster House and the media has continued the oppression and invisibility of people with disabilities and older people who require care and support in Irish society.

Today in the defence of the cut to Respite Care grant for those caring for people with disabilities and older people Minister Joan Burton cited a €20 million increase in the amount of funds paid to carers in the past year. That is there are more people in receipt of carers benefits now then there were this time last year.

Further analysis of this might see that the lack of housing supports for people with disabilities, fewer personal assistant and home help hours, slow processing of fair care applications and the high levels of unemployment and need for income into a family all have an impact on the numbers in receipt of the payment. I want to explore further the role of care in Irish society and recent history in the development of structures to support care and those cared for.

People with disabilities and older people are living longer. Institutionalisation is no longer seen as the way to ‘deal’ with or hide disability or infirmity related to old age. Warehousing and hiding those with disabilities is in the majority of cases no longer occurring. The role of the church in providing care for people with disabilities has also diminished.  Instead the state introduced measures for people with disabilities and older people to be cared for at home by relatives.  Measures which see adult children receiving personal care by their parents and having no say in if they want it to happen, expectations are placed on parents who may no longer wish to or be able to deliver that care. Those discussions are never had. I know many people who remain in their family home because they are not allowed consider other options because of either financial considerations due to carers payments or because it is thought the best place for them is their family home. They do not have the same choices as their sibling  or expectations of independence or individuality.  There are often no other choices that can be made.

More than €750million is paid to people who provide family care for others. Those being cared for are not asked if they want to be cared for by a relative and beyond the medical information sent with the forms for assessment nobody inspects the care given. (Means testing means that many families are not entitled to carers benefits and allowances, many families with children with significant disabilities receive domiciliary care allowance and the respite care grant only.)

In terms of vulnerable adults in Ireland we have no legislative base to protect them or for the state to step in where they are being neglected or are not happy where or how they are living. (There will shortly be mandatory reporting regarding sexual abuse of vulnerable adults )

With no support to turn to and no residential options available families provide care out of necessity and love and duty or combinations of all three. However the state has ignored the place of the cared for in the planning of services and supports. The failure to provide rights to supports and independence for people with disabilities in particular has meant that their voice is not heard in public discourse. Instead they are referred to as the ‘most vulnerable’, wheeled out on protests and the subject of pity pieces in print and broadcast media. There has been no analysis by the media of the waiting lists for residential supports, housing waiting lists, lack of needs assessment or knowledge about the people who do require care and support to live their lives as people with disabilities in Ireland.

The state moved from relying on religious bodies to paying voluntary organisations to provide care and now family members. The responsibilities, such as they are, of government departments are spread across several with little planning and co-ordination. Disability is still seen as a health rather than a social support issue – services for people with disabilities are still funded by the Department of Health, whilst social welfare payments come from the Department of Social Protection. If the services are cut or completely unavailable and then the social welfare payments are also cut this means that many vulnerable adults and their families are facing the cumulative effects of cuts and no one minister is taking responsibility and none of them really talk to each other about the impact or conduct an impact assessment of these cuts.  In short we have spent an awful lot of time talking about money and cuts but little time at all talking about quality of life and choice in living that life.

In the coming years we will see further expectations placed on families and removed from people with disabilities and older people through an over inflated ‘rights’ gaze. Day services are being closed either through cuts to services or because they are seen as not the right way to provide supports to those requiring care or support. They are not being replaced by individualised or community based supports.

And the politicians continue to get up on the feet to talk about their local service and how wonderful they are in providing services for people in need, they continue to object to cuts to payments to those caring.  Whilst I abhor  cuts to services and supports it is wrong that we have slowed the pace of reform so much or completely ignored the way in which people with disabilities and older people are supported.

The state has no expectations of people with disabilities beyond paralympianism or activation into jobs because ‘they aren’t that disabled at all’.  Considering the majority of people with disabilities are not paralympians and require some form of assistance, (although many paralympians require support too) our right to a voice, choice and inclusion  is too much trouble for the collective brain cells when it’s easier to jump up and down about a cut to the poor unfortunates. Austerity is ending rights before they can ever be expressed.