Monday, March 27, 2017
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  • Adrian discusses important topics such as medical cards and charges
  • He thinks the government and ministers dont understand people with disabilities and their families
  • He thinks a proper dialogue and understanding needs to be had by all parties

Will Government Ministers and TDs listen properly to the needs of People with Intellectual Disabilities & their Families?

I don’t think so, because Government and most TDs don’t think the needs of people with intellectual disabilities and their families are important enough.

The Government and TDs  just don’t understand how hard life is for us as people with intellectual disabilities and our families, with the constant cuts to services and secondary benefits/allowances like the phone allowance and the mobility allowance.

The prescription charges are a tax on people’s medication and has to be removed, and this prescription charge is hard on people with disabilities who are taking medication. It has jumped since this government came to power From 50 cent to €2.50, and is a very low blow, to tax medication which is vital for people with disabilities to take. If you have to take five different medications the bill could reach to €20 euro a month.

With news of the abuse of People with Intellectual Disabilities in services breaking nearly every month, it looks like the disability sector is in a mess. This is due to the lack of action from government / previous governments to make sure these services are protecting the clients’ human and civil rights, by making sure the clients’ needs come first and not that of the management or service.

Government agencies (i.e. Social Welfare, HSE to name two) seem to work against people with Intellectual disabilities & their families and friends. That is a view of a lot of people with Intellectual Disabilities.

The amount of forms and meetings and phone calls you have to make or give information or sign just to get your disability, invalidity and domiciliary benefits/allowances and apply for medical cards is ridiculous and should be made easier.

Even when you sign and give all this information, you might not get your benefits or medical card, if your mother and father are working, or your disability is not on their list of certain disabilities you don’t come under.

Just because your mum or dad is working you should not be punished. Your disability allowance and your medical card are yours, not your parents’. That should be looked at in the way they look how much you earn, and not take your parents wages into consideration.

The amount this stress causes to people with intellectual disability and their families & friends can be very hard. This is why the process of access to government services/agencies should be easier to access, and look at the person with intellectual disability and their needs – see the person, not how much it will cost the state.

This is why we need Government Ministers and TDs, and agencies to be given disability awareness training, and listen to people with intellectual disabilities and their families’ needs on how to make our life better.

We as people with intellectual disability and our family, friends and Self/Peer Advocates want Government, TDs and their agencies to look behind the Form or the PPS Number and see the Person with intellectual Disability and our family, friends and Self/Peer Advocates and to listen to our needs properly, by sitting down and speaking to us face to face and show us and our family and the self-advocates/peer advocates the respect we deserve.

This is what Government TDs and other party TDs need to do if they want my vote.

Author Bio

Adrian-NoonanAdrian Noonan is a Disability Self Advocate/Peer Advocate. He is P.R.O. of Seasamh, the Inclusion Ireland Self-Advocacy sub-Committee, and also of The National Platform of Self-Advocates.

Jerome Corby argues that the disability sector in Ireland needs a strong voice at the government table, in order to ensure people with disabilities are adequately supported and resourced as the Irish economy emerges from recession.

  • Jerome takes a look at the outgoing government
  • He thinks Kathleen Lynch has done a good job overall
  • We need to make sure that the next government Health ministers have disability as one of their priorities
  • There is talk of the Ministry for Health being split in two. This might be a good thing for the disability sector

As we approach the possibility of a government being formed, it’s worth reflecting on what is required of a new Health ministry with responsibility for improving the lives of people with disability and their families.

After what can likely be termed an admirable performance by the outgoing Minister of State with special responsibility for Primary Care, Social Care (Disabilities & Older People) and Mental Health, Kathleen Lynch, it has to be recognised that the greatest problem during that time was that she and Ministers Reilly & Varadkar had way too many strings to pull to be able to bring improvement to them all. Resources which were deemed to be scarce in the early days of this administration are difficult to free up now we seem to be seeing some economic recovery. Fine Gael are historically good at keeping the reins pulled tight, even as the perceived need for austerity subsides.

When the general consensus would seem to be that recovery is not happening for all citizens, perhaps that situation can be helped if a minister is appointed in the next government with sole responsibility for disabilities?

Let’s see where we would appear to be at after 5 years of the Fine Gael / Labour coalition. Ms. Lynch lists among her government’s achievements the implementation of free GP care for under-6s and over-70s, and raising awareness of mental health issues; for advances, she has pointed to improvements in (among others) perinatal mental health, and dual diagnosis – all of these are potentially beneficial for the lives of people whose care may be served by multiple areas of the healthcare system.

Regarding free GP care, it would appear that extending it to all citizens is not on the cards, given that the outgoing government believed us to be light on GPs anyway – everyone knows that keeping newly-qualified GPs in Ireland is a concern. But in a government where Lynch’s voice was being heard, we might have expected free GP care to spread to a broader age range at least. At any rate, that whole area is set to occupy a large part of any new healthcare administration’s time over the coming 5 years.

The modern world gives us more than enough reason for close attention to the issue of mental health – the challenges are greater, and coming from a wider range of contributory factors now than ever before.  The outgoing government did make efforts to increase independence for people with disabilities, and those with mental health problems, and at least propounded the idea of strengthening primary care services by consolidation of GP practices into primary care centres.

Inclusion Ireland have expressed concern at the lack of attention to disability in various organisations’ short-term plans (see http://www.inclusionireland.ie/content/media-releases). Examples, among others, are the Irish Human Rights and Equality Commission IHREC Strategy 2016-2018, the delay in implementing a volunteer advocacy programme in residential centres as advised by HSE following the Áras Attracta events, and the poor state of respite care services. During the early days of the last administration, http://IrishHealth.com observed that Minister Reilly needed to kick-start hygiene inspections by HIQA in healthcare settings. Add to these the concerns raised by various groups with the intrusive nature of those highly valuable HIQA inspections, and there would seem to be enough material to occupy a minister exclusively for a significant part of the next government’s tenure.

The Assisted Decision-Making (Capacity) Act 2015 has served to repeal the Victorian-era Lunacy Regulation (Ireland) Act 1871 and the Marriage of Lunatics Act 1811. The arrival of this legislation means persons with intellectual disabilities can make decisions for themselves in law. The new Act also removes a significant barrier to ratification of the UN Convention on the Rights of Persons with Disabilities (UNCRPD). This is surely a game-changer that will require some focus from the incumbent minister(s), senior or junior.

However, the focus of government to date, on simply smoothing the way for business, to the exclusion of other concerns, (“best little country to do business in” etc.), has meant increased disillusionment among the people who depend on government to provide adequate care and basic services. Moves towards the privatisation of water and public transport, the placement of private consultant services above public treatment in publicly-funded hospitals (which many believe to be the genesis and growth of the trolley problem), all are contributing to the national sense that profit is the purpose of good government, not the provision of a workable social and healthcare system for the people as a whole.

The obvious effort to “remove public housing from the nation’s balance-sheet”, which amounted to the dismantling of county-council-based building and maintenance services, is patently aimed at giving over this public concern to private interests. This has resulted in the building of little or no public housing in the period of the past government, which means homelessness for a considerable section of the population, and it is a major cause for concern throughout the country. Add to this the alarming situation where existing houses in the public system get boarded up for months on end with no repair or maintenance, and you have a population raising a serious eyebrow.

Simply put, the political tenet that economy wins over everything else is fuelling discontent. Most people in a sophisticated, educated society acknowledge that modern market-based economic conditions demand countries to be financially viable, but governments appear to be stumbling into electoral failure by working to that belief and ignoring the necessity for public services to remain public.

Fiscal function and the profit motive together can serve to change the focus of organisations or companies away from the provision of services, and swamp efforts to make a thriving economy serve all of its people equally. Compassion is easily relegated to the sidelines in this scenario, and history has shown time and again that there is much to be lost socially when we let that happen.

The last government spoke of the possibility of splitting the Senior Health ministry into two, one for urgent care/hospitals, and one for social services and primary care – this sounds interesting. One likelihood for people with disabilities and their families is that they will have greater need of more of the services typically provided by a healthcare system, than people without disabilities.

The provision of a junior ministry at least with sole responsibility for disability would seem to make sense, given that resources would appear to go to those that make most noise at budget time? We all know that one of the keys to unlocking budgetary resources is accountability – surely this separation of health functions would go some way to easing the job of reporting cost and expenditure information. The question there is, does government want financial information easily available to the public?

And of course, if you are more concerned on a national basis with profitability than care for those of us less fortunate, then carry on as before. Perhaps though, it is something for such a minister to bring to future discussions with government – to separate resourcing from finance generation and allow the principle of adequate service provision at least a competitive voice in the fight for resources in this more affluent modern world? If that voice was as strong and interested as that of Kathleen Lynch in the previous Dáil, it would be no bad thing.

Author Bio

Jerome CorbyJerome Corby is copy-editor for Frontline Magazine, and an interested citizen.

John Dolan, Seanadóir and CEO of the Disability Federation of Ireland, was successful in his bid for the Seanad in 2016. Here, he outlines his reasons for entering the race...

  • John Dolan works in the Disability Federation of Ireland (DFI) and he is running for election to the Seanad in 2016
  • One person in eight has a disability so they deserve a voice in the Seanad
  • The economy is getting better so we need to make sure that the disability area gets better funding

I have been asked to outline why I am a candidate for the Seanad election.

Put simply the Dail is the assembly of publicly elected representatives who elect the Taoiseach, eventually, and to whom the Government report. The Seanad is elected by less than 1,200 people, namely the members of every County and City Council, the newly elected TDs and the outgoing 60 Seanad members. Its members are to come from a broad array of areas of Irish society and are required to bring practical knowledge and experience to the work of the Oireachtas, where they complement the membership and focus of the Dail. This has not been the practice to date, as the Seanad is seen and used by political parties to support their desire for enhanced Dail membership.

The sixty Seanad members are spread across five vocational panels along with the two university panels. I am running in the Administrative Panel, which is concerned with public administration and social services.

Disability Federation of Ireland (DFI) along with eleven other voluntary disability organisations are entitled to nominate candidates to contest the Seanad election on the Administrative panel. After working with these nominating bodies it was decided that two candidates would be chosen to run, myself and Lorraine Dempsey, Chairperson of the Special Needs Parents Association.

Voluntary disability organisations have always comprised the majority of the nominating bodies. Over the years, with this in mind and being well aware that disability is a major societal issue, it was easy to come to the conclusion that the Seanad is a legitimate and potentially powerful place for the disability inclusion voice to be heard. One person in eight, 600,000 people, have a disability and then there is the impact on their families and loved ones.

The outgoing Government has recently, and eventually, committed to ratification of the UN CRPD (United Nations Convention on the Rights of People with Disabilities); Ireland has stopped being in recession; The severe cuts to services and incomes for people with disabillities, and the growing numbers – these were all critical reasons for me in putting myself forward to seek election. Allied to this we were hearing that the recovery had arrived and now there are constant demands by public servants and others for the restoration of pay levels and for increased spending on a range of public services. Quite simply, the voice of the 600,000 needs to be heard also.

All was far from well for disabled people and their families before the recession. Ireland was only at the start of a journey to ensure full and equal inclusion. We did not hear about too many disabled folk losing jobs throughout the recession simply because they were not in jobs to begin with.

There is another element to my reason to seek to be in the next Seanad. DFI ran a strong public campaign, DisableInequality.ie, in order to have disability inclusion as a core part of the focus of the new Government. Having someone from the broad disability movement in the Seanad would further support that objective. That campaign seeks a Cabinet Minister for Disability Inclusion to drive and co-ordinate a whole-of-government approach to ratification and implementation of the UN CRPD and an Oireachtas committee on disability Inclusion as well as the immediate reversal of the cuts that have taken place as a start on the road to inclusion.

Author Bio

10 - John Dolan - DFI and the Seanad Elections 2016

Senator John Dolan is CEO of the Disability Federation of Ireland, and was a successful candidate in the 2016 Seanad Éireann elections.
Twitter: @SenatorJDolan

 

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Adrian Noonan asks a question of the politicians.

Will Government Ministers and TDs listen properly to the needs of People with Intellectual Disabilities & their Families?

I don’t think so, because Government and most TDS don’t think the needs of people with intellectual disabilities and their families are important enough.

The Government and TDS  just don’t understand how hard life is for us as people with intellectual disabilities and our families, with the constant cuts to services and Secondary benefits/allowances like the phone allowance and the mobility allowance.

The prescription charges are a tax on people’s medication and has to be removed, and this prescription charge is hard on people with disabilities who are taking medication. It has jumped since this government came to power From 50 cent to €2.50, and is a very low blow, to tax medication which is vital for people with disabilities to take. If you have to take five different medications the bill could reach to €20 euro a month.

With news of the abuse of People with Intellectual Disabilities in services breaking nearly every month, it looks like the disability sector is in a mess. This is due to the lack of action from government / previous governments to make sure these services are protecting the clients’ human and civil rights, by making sure the clients’ needs come first and not that of the management of service.

Government agencies (i.e. Social Welfare, HSE to name two) seem to work against people with Intellectual disabilities & their families and friends. That is a view a lot of people with Intellectual Disabilities.

The amount of forms and meetings and phone calls you have to make or give information or sign just to get your disability, invalidity and domiciliary benefits/allowances and apply for medical cards is ridiculous and should be made easier.

Even when you sign and give all this information, you might not get your benefits or medical card, if your mother and father are working, or your disability is not on their list of certain disabilities you don’t come under.

Just because your mum or dad is working you should not be punished. Your disability allowance and your medical card are yours, not your parents’. That should be looked at in the way they look how much you earn, and not take your parents wages into consideration.

The amount this stress causes to people with intellectual disability and their families & friends can be very hard. This is why the process of access to government services/agencies should be easier to access, and look at the person with intellectual disability and their needs – see the person, not how much it will cost the state.

This is why we need Government Ministers and TDs, and agencies to be given disability awareness training, and listen to people with intellectual disabilities and their families’ needs on how to make our life better.

We as people with intellectual disability and our family, friends and Self/Peer Advocates want Government, TDs and their agencies to look behind the Form or the PPS Number and see the Person with intellectual Disability and our family, friends and Self/Peer Advocates and to listen to our needs properly, by sitting down and speaking to us face to face and show us and our family and the self-advocates/peer advocates the respect we deserve.

This is what Government TDs and other party TDs need to do if they want my vote.

Author Bio

Adrian-NoonanAdrian Noonan is a Disability Self Advocate/Peer Advocate. He is P.R.O. of Seasamh, the Inclusion Ireland Self-Advocacy sub-Committee, and also of The National Platform of Self-Advocates.

theresa-thompson-vote
Photo: Theresa Thompson
This issue has a number of articles on the upcoming spring election. Politicians will be falling over themselves trying to convince constituents to vote for them, on the basis that they have the best contribution to make for our collective wellbeing. Their promises will be breathtaking but worth very little—as the nation knows from countless past elections. At the end of the day what happens on the ground very much depends on the incoming Taoiseach’s priorities—consequently, all a voter can do is to keep mentioning the disability sector to hopeful candidates and draw their attention to specific shortfalls in their local areas. Information received for this issue of Frontline from political parties has been short on specifics and costings.

Many people were invigorated at the last election by promises of transparent and open government—to transact business in a very different way. Hand on heart, can it be said that this government has been, in fact, any different to previous ones?  Yes, some good things have happened for people with disabilities—the Assisted Decision Making (Capacity) legislation was at last passed on the last day of the Dáil before Christmas. There will, however, be unforeseen costs associated with the implementation of this legislation, and who will bear those costs?

In the last year, significant difficulties have been identified—by HIQA and investigative journalism—in some residential services. Is it possible that the service providers or the HSE did not know some of the identified difficulties? If known, was it just indifference that prevented energetic interventions? Has the cost of HIQA to services bled core budgets to the extent that the person with a disability is less well served? The absence of some parallel funding to support the implementation of HIQA standards has challenged service providers to retain all those necessary interventions and supports in very straitened national financial circumstances. After years of cutbacks, there is a need for services to renew, energise and push the boundaries of what is possible.

In her article, Máiríde Woods rightly queries whether this space, over the last twenty years, has already been well occupied. Is it time to be looking at alternative models of service delivery that foster individual living solutions,placing the person at the centre? Yes, considerable resources are allocated annually to disabilities, but is the money spent achieving the maximum outcomes? There are so many questions that still need to be asked, but transparency (not only from government, but also from service providers) has not always inspired our confidence that they will be answered.

Can we be confident that politicians seeking election or re-election will have learnt from the past and have the courage to deliver on their doorstep promises, or will we continue to have the same disappointing mediocrity and indifference?

Disabilities, now more than ever, need strong, courageous leaders,capable of pushing the boundaries, and fearless in striving to reach new frontiers. Is this too much to wish for this Christmas?

Beannachtaí na Nollag agus na hAthbhliana.

Stephen Kealy.

Chris Lowe draws an interesting correlation between environmental and disablement concerns, and argues that rather than being distinct, the two may be mutually complimentary – it is necessary to consider both when legislating for change to improve conditions for people with disabilities, and for society as a whole…

One thing is certain; disabled people of all sorts need to be involved in environmental politics, because if we’re not part of the conversation, decisions that divide us will be developed. “Nothing about us, without us”.

As a disabled person who has had an interest in environmentalism for a while, one thing has always struck me – whenever the issue of climate change comes up, someone will always raise the issue of population control. These tend to be isolated voices, and the discomfort of other environmentalists is usually clear because when they say there are too many people it usually means other people, usually the poor, those living in poorer nations and disabled people. It also distracts from solutions to important areas such as carbon policy. These fringe environmentalists can generally be described as Malthusians and offer us a stereotype of environmentalists. Notable Malthusians who have taken anti-disability positions include animal rights ethicist Peter Singer (who argued for the killing of disabled infants), the anti-technology primitivist John Zerzan (notable for his use of the term “pull the plug” in  relation disabled people), self-proclaimed eco-fascist Pentti Linkola, the right-libertarian Garret Hardin (whose support for The Bell Curve and its pseudo-scientific linking of IQ and race puts his earlier calls for sterilisation based on intellect in a particular light).

The Malthusians draw on the ideas of Thomas Malthus, a cleric who lived in the 18th and 19th centuries. European society had seen the French Revolution sweep away the old order of nobility, and monarchy. Malthus, a supporter of conservatism, believed that Revolution could be avoided if population could be limited through natural checks and that Government intervention should be as limited and unappealing as possible. If that failed, revolution and famine were inevitable consequences. Subsequent generations took up his ideas and while he himself would now be identified as pro-life, many in the eugenicist movement who called for compulsory abortions and sterilisation identified as neo-Malthusians. His ideas of making what we now know as welfare as deficient as possible, anticipated and at times influenced the development of the workhouse and other systems of confinement, as well as having similarities with the current unproven claims of “scroungers” and “strivers” that come from the centre right parties. By the mid-twentieth century, a number of ecologists such as Garret Hardin and Paul and Ann Ehrlich, embraced it with an environmental gloss. The argument was still that an ever-growing population was competing for ever scarcer resources.

Most environmentalists are not Malthusian. The former leader of the Irish Green party, John Gormley, writing in the September 2015 issue of The Village expressly condemned the reactionary politics which both opposes immigration and calls for compulsory abortion, infanticide, and euthanasia in the case of disability and old age. The eco-socialist movement takes a similar line, calling instead for the changing of society, and while focusing on opposition to anti-migrant and pro-population control in the third world, their position can easily be adapted to a social model position. The problem, as eco-socialist Ian Angus points out, is not the inadequate resources but their unequal allocation; in other words, we need a system change, which is precisely what we argue for with the social model of disability.

While not all environmentalists are Malthusian, the casual ableism that we see elsewhere in society is present here. Even among the most radical you do see here the usual ableist terms, and those who don’t, often exclude us completely from their analysis. Less equality-orientated environmentalists fall into anti-vaccine conspiracy theory territory, with claims like the one that such-and-such a chemical causes autism. To some, this presents a barrier to activism in these spaces. Others including myself see this as making our involvement more important, as we need to ensure that future environmental policy includes disability-safe positions. Our American counterparts have developed the politics of eco-ability, which takes as a starting point a respect for difference and an opposition to the idea of the normal. Eco-ability specifically comes out of animal rights activism and academia, in which many of the same ableist ideas circulate, and it provides a space for disabled people in which we can both interact with and critique ecological politics.

While opposition to ableism is mainstream disability thinking, some of the positions taken within eco-ability are likely to be controversial even within our own groupings – the extension of the politics of disablement to animal rights, for one thing. Other ideas are useful, such as linking the need for assistive and other technologies to be developed as environmentally sustainable, non-harmful to people and promoting interdependence, as well as its linking of ableism to intersectional systems of inequality, power, and social control, including those that operate at a global level.

Alex Ghenis of the World Institute on Disability specifically links the issues of disability and climate change. He does this in two ways; firstly, that more people will develop impairments through injury, disease, malnutrition and as a consequence of conflicts and wars caused by climate change. The current Syrian conflict provides us with a concrete example of a war having partial roots in climate change. Secondly, disabled people will be excluded through inaccessible shelters or fragile support systems, and suffer negative health effects. This will also impact climate migrants, who already face barriers due to immigration policy (including Ireland’s continuing love of locking people into institutions, in this case direct provision), and if they have impairments they face inaccessible accommodation, transport and an ableist and racist state bureaucracy. During the recent passing of the International Protection Bill, it was suggested that it would exclude disabled migrants from family reunification. Ghenis’ own solutions involve managing these systems, such as easier-to-access welfare systems, increased employment, and accessible housing.

In some respects, his solutions seek to assimilate us into mainstream society rather than substantially change society. The social model has always offered us an analysis of how the built environment can exclude us, the use of a town built by wheelchair users to explain the social model, and why removing socially-created exclusions shows us this. We don’t have to use exaggerated stories – we can see this in our everyday lives and the development of Ireland’s built environment.  For example, Ireland is incredibly car-centred, in part as a consequence of the deliberate policy of suburbanisation; for someone like me, whose impairment prevents me from ever driving, this combined with increasing public transport costs potentially excludes me from full participation. Many solutions to Ireland’s car dependency and society’s carbon footprint suggest cycling as an activity which specifically excludes many (though by no means all) disabled people. Likewise, a car-free scheme in areas of Dublin City excludes disabled people who require the use of their cars. An environmental- and disability-centred approach to this could see, for example, a public transport system that is accessible physically, financially, and in terms of connectivity and frequency. It would also involve greater emphasis on developing local economies, and having an impairment-flexible built environment.

The social model and environmentalism have one important link – both require system change. For the social model, this has always meant seeking a barrier-free utopia so that limitations placed on us over our impairments are removed. One thing is certain; disabled people and our allies, across all impairments, need to be involved in environmental politics, because if we’re not part of the conversation, policies that segregate us again will be developed. As environmental policies and climate change concern us all, we have a strong reason to invoke the old slogan: “nothing about us, without us”.

Author Bio

Chris Lowe is an independent
(unemployed) disability researcher, currently awaiting a
non-disability related viva at Maynooth University.

(https://twitter.com/@ChrisLowe_Irl)

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Adrian Noonan, self-advocate PRO at Inclusion Ireland, details the Lunacy Act Ireland 1871.

Adrian Noonan discusses Ireland not signing the UN Convention on the Rights of People with Disabilities and the Lunacy Regulation Act of 1871.
What will be needed is an ombudsman or a commissioner for people with disabilities, to make sure our rights are protected.

The Lunacy Regulation Act of 1871 is an act that stops people with intellectual disability making their own choice, and refers to us as “idiot, lunatic, or of unsound mind, and incapable of managing himself or his affairs”. Today, the courts service lists the reasons adults are admitted into Wardship as ‘who may require the Court’s protection because of mental incapacity’.

Because you have a Disability does not mean you automatically have a mental incapacity. Some of our peers have a profound intellectual disability but they are not idiots or lunatics. In some cases they may be not able to speak, but with help some are able to let people know what they want.

Look at Steven Hawking – a college professor; he does not have an intellectual disability but he has a Motor Neurone Disease. If Steven Hawking can be a professor, so can people with an intellectual disability.  If you can’t speak that does not always mean you cannot make choices for yourself!

To replace the Lunacy Act, the Assisted Decision-Making Bill is at its last stage in the Irish Senate. Once signed into law, there is no excuse for Ireland not signing the UN Convention on the Rights of People with Disabilities. The real work then starts, because the convention has to be monitored to make sure our rights as people with disabilities are protected. What will be needed is an ombudsman or a commissioner for people with disabilities, to make sure our rights are protected.

Last week on UN International Day for People with Disabilities, Inclusion Ireland Self-Advocacy Sub-Committee released a video on the theme of this year’s UN International Day for Disabilities – Access & Empowerment. Some members of the group videoed themselves with help from Inclusion Ireland, in particular Sarah Gavra Boland – Inclusion Ireland’s Media and Public Relations Manager.

Themes covered in the video are:

  • Community Sports – Referee
  • Going for a drink and with friends and listening to Traditional Irish music
  • Relationships
  • Shopping with your friends
  • Getting a tattoo

It is about our choices. We also approached the difficult subject of a person with a disability being gay. It is about our lives and we run them the way we want. The choices we make in our life are ours to make. Yes, we will make mistakes along the way like everybody else – but we learn from them. It might take us a bit longer than every body else but we will do it the way we want to.

Follow the link below to view our video:

https://youtu.be/hfph5esaRAc

Inclusion Ireland Self-Advocacy Group.

Author Bio

Adrian Noonan is PRO of  The National Platform of Self-Advocates, the self-advocacy committee of Inclusion Ireland, and Seasamh, the Kilkenny-based self-advocacy group.

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Sarah Lennon looks forward to the benefits for all of the Assisted Decision-Making (Capacity) Bill 2013, which passed all stages in the Seanad on Tuesday, 15th December following many hours of debate.

Recently I have been travelling the country for work, meeting many different groups of people including people with intellectual disabilities, families, carers, employees and people who provide all kinds of services. Various topics have been on the agenda, including money and finances, social inclusion, moving on from congregated settings, medical decisions, relationships or making a will.

Inevitably and unfailingly, the conversation comes round to the Assisted Decision-Making (Capacity) Bill 2013, and this demonstrates either the sheer relevance of the legislation or my predilection towards introducing it into conversation.

It’s fair to say that the reaction to the Bill has been mixed, with some considering it to be the panacea to all ills, while others are sceptical that it will represent anything in practice other than Ward-of-Court-lite, and some think that the legislation is not radical enough.

More often though, I have been met with confusion, anger or a complete lack of knowledge about the Bill and what it contains. On one memorable occasion I was branded a ‘lunatic’ for suggesting these changes were imminent. The irony of receiving this moniker when speaking about repealing the ‘Lunacy Act’ was not lost on me.

While it is clear that confusion remains and that the information is not necessarily ‘out-there’, it is simply not true to say that there has not been publicity and consultation on the legislation.

Extensive consultation has happened, individuals and organisations were invited to make written and oral submissions, and there was a public consultation in Dublin Castle in 2013 when the Bill was first launched by the then Minister Alan Shatter. Between the recent third and fourth stages of the Bill there were close to 300 amendments leading to significant changes to the legislation.

But the fact remains that in the ‘real-world’, there remains a confusion about why this law will matter and how it will affect people’s lives. The law is complex in parts, and often the debate around it is technical or framed in legalese. Although the Bill itself does not necessarily strike new ground on an international scale, it does represent a seismic shift in the area of capacity and decision-making. This law matters and it matters a lot.

And it doesn’t just matter for people with disabilities; the word ‘disability’ does not appear in the Bill when referring to capacity. The Bill is for everyone, applies to everyone and even if it doesn’t affect our lives today or the life of a person in our family, it will at some point.

For most of us, decision-making is something we take for granted until through injury, stroke, mental illness, dementia or Alzheimer’s disease we are suddenly faced with personal, financial or medical difficulties. From our position as apparently competent decision-makers, we are then faced with a very unpalatable set of choices of informal decision-making or Ward of Court.

For all parents, the prospect of their son or daughter becoming an adult and losing parental power is difficult, and for some families of people with intellectual disabilities, their son or daughter becoming an adult is simply too frightening to contemplate.

Many people articulate this fear to me by asking the best way to leave guardianship of their adult son or daughter in their will, and when I inform them that they cannot do this I am met with incredulity, dismay or frustration.

Questions like this are not a reflection of a parental desire to treat their son or daughter as a chattel, but from a fear of a future for which they are no longer around, and a fear of ‘what will happen after I am gone?’.

On the flipside, many self-advocates that I speak with are desperate for this legislation in order to assert their right to make their own decisions. To have their presumption of capacity to make decisions enshrined in law represents an affirmation of their status as adults, as citizens, as equals in law. People speak to me of support, but support on their terms, of their choosing and under their control.

When we consider these two often-competing perspectives, and add in the views of many people who are paid to work with people with disabilities, you see the many angles of approach and the competing perspectives.

The United Nations Convention on the Rights of Persons with Disabilities states that “persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life”. As a bearer of a legal right to make my own decisions, I do not need the State to grant me this right; it is inherent to my personhood. I may need support to articulate my decisions, or to receive the information needed to make my decisions in a way that I can understand, or to have somebody who knows me well enough put forward my will and preferences. The Assisted Decision-Making Bill addresses ‘decision-making’ capacity and this is distinct from legal capacity and is in essence ‘mental capacity’.

The Committee on the Rights of Persons with Disabilities (an independent body that monitors State implementation of the Convention) said in 2014, that “Legal capacity and mental capacity are distinct concepts” and that “mental capacity must not be used as justification for denying legal capacity”.

Clearly the Assisted Decision-Making Bill isn’t consistent with this position, as a person can have their decision-making rights removed by court through a Decision-Making Representation Order, notwithstanding that the representative must act within the ‘will and preference’ of the individual.

Ireland has identified the Assisted Decision-Making Bill as the removal of a barrier to ratification of the Convention, not regarding this apparent conflict.

In a future reality where my capacity is in doubt because of a change in my mental functioning, I will need the Assisted Decision-Making legislation. People who know my ‘will and preferences’ will become crucial support mechanisms. These are not necessarily paid people with a checklist or flowchart on ‘functional capacity’ – nor are they medical professionals with a ‘mental age of…’ barometer.

They are not people who will decide what is good for me or in my ‘best interests’. My will is mine, it is personal to me, and my preferences flow from my will. The best people to evidence this are those who know me and my narrative, and that is personal to me.

The Bill went to Seanad stage on November 10th 2015, and barring any last minute amendments or difficulties should be law before Christmas. Although this will be a momentous day and it is true that I for one will certainly toast good riddance to the Lunacy Regulation Act 1871, it does not represent the end of the journey.

When the legislation is reviewed in 5 years, as is set out in law, it will hopefully be in an Ireland that has ratified the UN Convention, and discussion and debate around whether this law satisfies our obligations under the convention (or not!). I would hope that by then a significant body of individuals would have used the supports under the legislation, and in particular the less interventionist mechanisms contained in it.

An analysis of how the legislation is affecting the real lives of people will be crucial to deciding whether the legislation is successful or not.

There is significant work to be done to promote this legislation, and promote confidence in people using the legislation. We need to equip individuals to actually utilise and avail of it, to ensure that people offering services (all services, not just care services) understand their role, and to encourage family members to understand their role too.

There is work to be done to promote self-confidence among people with disabilities that they have a right to make decisions with support and not have that right wrested from them.

Author Bio

Sarah Lennon’s educational background is in law and equality studies. She has worked for many years in disability, equality and social and legislative change. Sarah has worked with Inclusion Ireland since 2006, and in the area of vocational training for people with disabilities prior to that time.  

Among her many areas of work, changes in capacity law have dominated Sarah’s employment to date, and as well as leading out on Inclusion Ireland’s campaigning work, she has developed training and information booklets such as the popular ‘Who Decides & How; Making Medical Decisions’.

General Election 2016 is just around the corner, and the question was put to the Living Skills Group in Trinity College Dublin to see what their thoughts were on the issues to be brought to the attention of our politicians as they seek our votes...

  • At first, everyone gave out about politicians. “They offer the moon and the stars, and do nothing”; “They sit on their asses”. “They should give everyone a house or apartment”, “look after the elderly”, etc.
  • Some politicians are good while some are not.
  • Housing was top of the list of worries.
  • They agreed that being connected to a service was a good thing, but some of the services can’t get enough funding from the HSE.

This was the question asked to a group of people with intellectual disabilities doing a course in Independent Living Skills in The Discipline of Occupational Therapy, Trinity College Dublin. They live with either their family or in a hostel, or in their own apartments. Some have jobs, some are in services, some do nothing much all day other than go to health services.

At first, everyone gave out about politicians. “They offer the moon and the stars, and do nothing”; “They sit on their asses”. “They should give everyone a house or apartment”, “look after the elderly”, “free dental care, and medical care”, “more jobs and more respite”, “get rid of the water charges”.

They were then asked if they had ever gone to a TD, and three had. “My TD is great, he has been a great help to me and my family”.  Another said “He didn’t do much for me”.

The next question was about what politicians could do to make things easier for people in situations like themselves.  Housing was top of the list. One person told his story about going to services for the homeless, for example Focus Ireland who told him told to get help elsewhere as that their service was not for the likes of him. Another person told his story about being on the housing list for years, staying in a hostel with other homeless people for four months, and about how eventually his advocate was able to get him sorted with an apartment. Someone else talked about how her social worker got her into a hotel when it was dangerous to live with her family.

When asked what was the most important thing to have, some said it was a key worker and or an advocate. They agreed that being connected to a service was a good thing, but some of the services are now refusing to take people because they can’t get the funding from the HSE. “They should stop fighting and give in a little on both sides”. “People need services. We need help in getting medical services and especially for mental health.” “If you fall out with your service, or if you think they are crap, you don’t have anyone else to help you. What can a politician do about that?”

Author Bio

Living Skills Group, Trinity College Dublin.

Adrian Noonan, self-advocate PRO at Inclusion Ireland, wishes for greater awareness of the needs of people with intellectual disabilities at all levels of the democratic process.

People with Intellectual disabilities are not supported to register to vote, or to vote, in Ireland.
Disability services have used staff shortages as an excuse.
People with intellectual disabilities have a right to use their vote,.
People with Intellectual Disabilities need to be trained & educated on how elections work.
All buildings have to have wheelchair access, and putting in easy-read and visual and audio aids can easily be done nowadays.
Voting for the first time is a very nervous and scary time .

People with Intellectual disabilities are not supported or encouraged to register to vote, or to vote, in Ireland by government or their agencies, who can set up and organise, advertise and have training workshops around the country.  This could be done with the help and support of disability advocacy organisations.

Disability services have used staff shortages as an excuse. But it only takes one staff member to go on a computer or go to the local library to get a printout of the voting forms and bring the voting forms to their clients or disability service users who want to vote.

Disability services can also have workshops on voting in their service, by inviting disability advocacy groups in on training, and educating clients or disability service users on their right to vote and have their say.  People with intellectual disabilities have a right to use their vote, to have a say in who they want to represent their issues and needs on a local and national level.

People with Intellectual Disabilities need to be trained & educated on how elections work, and why and how many times they’re called.

When you go to the polling Station, you have to bring I.D to prove who you are. Mostly you bring your passport or driving licence and have your voting card with you, or you can’t vote.  All polling stations open from around 8am to 10pm, so people who work or go to college can vote.

Persons with intellectual disabilities should not be stopped in their right to vote. It is our right to vote and no barriers should be in the way, like accessibility to buildings.

All buildings have to have wheelchair access, and putting in easy-read and visual and audio aids can easily be done nowadays.

Voting for the first time is a very nervous and scary time for people with intellectual disabilities.  All the polling stations should be given disability awareness training to educate the staff on how to be more supportive, and the polling station can be more disability-friendly by having an easy-read platform and visual and audio aids in the polling station.

Author Bio

Adrian Noonan is PRO of  The National Platform of Self-Advocates, the self-advocacy committee of Inclusion Ireland, and Seasamh, the Kilkenny-based self-advocacy group.