Maman Poulet | Clucking away crookedly through media, politics and life

Enda Kenny seeks to reassure the FG troops

December 21st, 2012 · Irish Politics

Enda Kenny’s weekly email message to Fine Gael members includes this paragraph on the cabinet decision on legislating for X.

The aim of Government here is to include clarity and legal certainty in relation to determining whether a termination of pregnancy is permissible in cases where there is a real and substantial risk to the life, as distinct from the health, of a woman as a result of that pregnancy. The process will also take full account of the equal right of life of the unborn child. An extensive debate on this sensitive and complex issue will take place in the New Year.

 

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The Bigger Picture

December 14th, 2012 · Disability, Irish Politics, Social Policy

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.

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Community supports and the HSE budget in 2013

December 6th, 2012 · Disability, Irish Politics, Recession

The Department of Health and it’s ministerial team held a press conference after the budget yesterday to talk about the budget and the estimates for health expenditure in 2013.   I am surprised at the lack of  focus on the very serious problems emerging from the Department or indeed being hidden from view.

Minister for State with responsibility for Disability and Older people Kathleen Lynch released a press statement.

The Minister said that she is very mindful of the enormous challenges facing Government and the Health Services. In such circumstances she also particularly welcomed the commitment to restore the core community services of home help, home care packages and personal assistant hours. She said

“Community Services are the services that keep people well at home, where they want to be, and out of hospital and residential care. A key element of our overall health reform plan is to keep and treat people at the lowest level of complexity. In moving towards this model of health care provision, community services will continue to play a key role”.

It’s not clear if people who have lost hours will have their hours restored or, equally significantly, if the way in which hours of support are assessed will be changed. In the last few weeks the HSE has been cutting hours of support based on assessments which stop home care  helping with so called non essential tasks like shopping, cooking, cleaning, laundry, organising a household.  It has become a service of minutes rather than hours.

Does this restoration of budget mean that people will get help with these vital tasks?  And will Personal Assistance continue to mean supporting the philosophy of independent living so that people with disabilities can have people to help them attend employment, education and have social lives.

There were two cuts to community support budgets in 2012 in January and also in September.  Again it’s not clear which cut has been restored.  There were no figures.  From the cuts experienced this year the national figures published and the experience of the reality of local implementation are very different things.

The ‘restoration’ of the community supports budget also will not help the many older people or people with disabilities who have no service, who never had a service, indeed the many who are in acute hospital settings (690 people in August before the second set of cuts – some for more than 6 months waiting ) and would like to return home.  Those on waiting lists for services whether in the community or needing residential supports are not being heard in this recession.

The Ministers would not provide information on the HSE budget for 2013 and it has not been published. So we do not know for example what the aids and appliances budget for 2013 will be. We also do not know what the cut to the overall Disability budget is. For those who require respite there is no information on whether there will be any reveral of the massive cuts to services. (This is seperate to the 20% cut to respite grants paid to carers)

We do know that there must be a €900 million cut to the HSE budget in 2013.  €900 million.  And if hospitals overspend the budget on all other aspects of health – ie primary care and community support gets cut. There is no ringfencing of that money from being taken and spent elsewhere. The cost of homehelp hours saves the 500k per night cost of acute hospital care.

Those on medical cards face a 200% increase in prescription charges and also many items are removed from the Medical card scheme entirely and have to be paid for in full.

Watching the press conference there were many questions but few answers and it will take several weeks if not months before we are clearer on what this will really mean for people with disabilities.  For those who have no services or need more supports then what they have they may never get answers or even questions asked.  There will be lots of bandwagon jumping about the ‘most vulnerable’ but little reflection on the reality, the administration, the decision making and priorities of those who make decisions. The Ministers may commit to inclusion and equality but how it is being delivered locally through funded agencies and what is happening in the daily lives of people with disabilities is still not being heard or listened to.

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Rights Not Charity

November 22nd, 2012 · Disability

From the streets of Dublin yesterday, anger, passion, love and action. The Disability Rights Coalition’s first march captured by Paula Geraghty.

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The Smokescreen of Disability and #Crref

November 6th, 2012 · Disability, Equality, Uncategorized

The referendum on Children which will take place this Saturday is about the state’s responsibility to children who are neglected or abused and at risk in their families – where their parents are not able to protect them or may be abusing them. It is about listening to children in those situations and acting where they need to be protected. It is about listening to children where decisions are being taken on their future, where families breakdown or disappear completely and about seeing them as persons in their own right.

It is not about disability. It is not about Parents with a Disability. It is not about children with disabilities and their disability.

Some of those who are insistent on pointing out disability issues with regards to this referendum don’t actually favour rights for people with disabilities or this state ratifying the UN Convention on Rights for people with Disabilities. They don’t want people with disabilities to make their own decisions or be supported to do so, have excellent services, gain independence or have families and relationships of their own. But that’s not the point of the referendum this Saturday. It’s about a very small group of children in exceptional situations who need the state to protect them. Heretofore the state has not always done this and our terribly outdated Constitution needs to be changed to ensure the state can act in the very small number of situations where children need protecting and need to be heard.

The referendum if passed will also challenge courts to think about children in a different way with regards to many issues. The amendment will allow for much new law to be made to help all children (including children with disabilities) define their rights.

I would like a new constitution please where children and adults with Disabilities were protected. I would love to think that the forthcoming Constitutional Convention would address this and guarantee equality but it won’t. I despair at the fact that this government and all political parties either ignore people with disabilities or patronise us and use us as political fodder and amongst the first to cut.

But I won’t be confused this Saturday when voting and think that because my life is less valued or the lives of other people with disabilities are less valued that I will take it out on children who are regularly neglected or at risk or not listened to in child protection matters or the general case where children are not seen as individuals. I want those children to be heard. They deserve it. I want the state to have to support those children and those families and if it is not working and never going to work, in the exceptional cases, then the state needs to act and be held accountable to act. This is what this referendum is about.

It is up to us as citizens to demand action on all the issues which this referendum and the proposed amendment is not about – not about poverty, not about special needs assistants not about education or denying all children a right to an education, not about interfering in decisions parents make on health, not about replacing parents, not about bullying, and does not stop parents from telling their children what is right and wrong.

We really need to be clear what the referendum is about and not use it as a chance to beat up the government over their oppression of many childhoods while paying bondholders. Too many children have not been heard, too many children have been abused and too many children have died because the state did not or could not act. Children (including those with disabilities) will be seen as individuals if this referendum is passed.

Finally I am upset to have to refute the misinformation which is in danger of creating an automatic assumption that having a disability makes one a bad parent which is another emerging issue from those who oppose this referendum. It is horrendous that they are making people more vulnerable and hidden by scaremongering in this manner. We should be supporting all parents with disabilities to be appropriately supported and valued in having families and being parents – if they need that support.

The Children’s Rights Alliance have prepared a note on the referendum and disability. It is worth studying if you are confused or worried about issues concerning parents with disabilities or children with disabilities.

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