Monday, March 27, 2017
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As Mary-Ann O’Donovan tells us, the role of policy and personal choice in moving to a new residence.

  • People with intellectual disability are moving to new homes/places to live.
  • Some people are moving to new homes in the community
  • Most people move to a similar type of home
  • People are not always asked if they want to move
  • People do not always get to choose who they will live with.

National housing policy for people with disabilities promotes the move from large residential settings to community-based living (with four people the recommended maximum number sharing the same residence). This is in line with international practice and the UN Convention on the Rights of Persons with a Disability, which states that an individual has the right to live independently as well as having the right to choose where and with whom to live. This is a welcome advancement of the self-determination, rights and autonomy of people with intellectual disability.

Who moved to a new residence?

Tracking where people with ID lived between wave 1 IDS-TILDA data collection (2010) and wave 2 data collection (2013), identified 120 movers. Of these 120 movers, just under 30 % moved to a less restrictive setting (e.g. a community home or independent living). The majority of moves made were lateral moves, which involved an individual moving to a setting similar to the one they were resident in previously. Also types of move were not all in line with the policy of de-institutionalisation. Some older people with ID were found to move to more restrictive settings (e.g. from community to institutional settings).

The breakdown of these movers by gender, age and level of ID are shown in Table 1.

 

Table 1: gender, age and level of ID 

 

Lateral Community Restrictive
Female 63.9% 37.5% 50.0%
Age (mean years) 59. 9 58.0 57.1
Mild ID 16.2% 9.7% 18.8%
Moderate ID 57.4% 45.2% 68.8%
Severe/profound ID 26.5% 45.2% 12.5%

 

Choice and involvement in decision to move?

Personal choice accounted for 10% of the moves made. The most prevalent reason for moving for the lateral movers was to accommodate the service (34.8%); whereas for more restrictive movers,  it was due to a change in health status (53.3%) and as result of service policy for more community-based moves (61.3%).

 

Though personal choice was not a dominant reason for moving for most of the participants, national policy and human rights conventions attest to the importance of choice of where and with whom to live, and that the individual with ID is involved in the decision-making process around moving to a new residence. The IDS-TILDA data illustrates that the rate of involvement of the individual in the decision to move was relatively low, with 7 out of 10 people not involved in this decision; and 4 out of 10 people reporting that they did not want to move. However, there was high reported happiness post-move. The decision to move involved multiple stakeholders for the majority of movers.

 

Clash of policy and choice?

From the data to date it would seem that moves that are taking place are not consistent with current policy directives, and that personal choice does not appear to be considered in most cases. This is a complex issue and needs broader debate. Though de-institutionalisation is a positive policy initiative, for people with ID who have only ever known this type of setting and have strong connections to the place and people within that place built over many years, the prospect of moving somewhere new could be quite daunting. This is a challenging situation for policy makers, service delivery, people with ID and their families. Further dialogue is needed to disentangle the policy recommendations, which are widely welcomed, and the individual’s preference for change (or not) in later years of life. How transition is planned and managed and the extent of involvement of the individual with ID and their chosen support, be it family, friends, advocates, is likely to impact greatly on successful implementation of the policy and enhanced quality of life and well-being outcomes for the individual with ID.

It is important to acknowledge the importance and enormity of such transitions, to track how they are happening, and their implications for the health, participation and well-being of the older ID population.  The Intellectual Disability Supplement to TILDA is currently tracking this movement by people with ID and will track longitudinally the impact on health and well-being. Although the movement of people with ID to community-based living is positive, it has the potential to impact negatively on people with ID if the individual is excluded from the decision-making and planning process, if the move is undertaken hastily and without due time and consideration, and if the required and appropriate supports are not in place to maintain the individual with ID in the new residence in the community.

More research is needed on both the processes and consequences of moves for people with ID as they age as well as greater insight into the extent of involvement in these processes. In addition, policy does not seem to acknowledge the diversity of moves that are happening in practice; there needs to be greater linkage between housing and health policies, to ensure the appropriate health and social care supports are in place so that the person with ID can age in the place of their choosing.

Author Bio

Mary-Ann O’DonovanMary-Ann O’Donovan is currently project manager of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) and based in Trinity College Dublin. Mary-Ann completed her PhD in Health Services Research in the Royal College of Surgeons Ireland in 2015, focusing on the health and housing needs of older people with an intellectual disability. Prior to this she was employed as research officer in the Disability Databases Unit of the Health Research Board. In this role she was responsible for the management of the National Physical and Sensory Disability Database (NPSDD). Mary-Ann has also worked as research officer in the National Disability Authority and the Rehab Group.

In this opinion piece, David Quinn, Managing Director of Pascal Software, Board member of Inclusion Ireland and member of the Social Democrat party, has taken a close look at the current Irish taxation system. Here he offers a view of a different way of doing it, to be more equitable and eliminate the poverty trap for low-income earners, which could benefit people at all levels of society, including people with disabilities...

  • Universal income would give every adult a basic income every month.
  • This idea has been looked at and talked about for many decades.
  • It might be a way to free up people to take on other roles in society such as being a carer.
  • It might benefit the lesser well-off parts of society.
  • David Quinn’s figures make interesting reading.

Back in the 1930’s, The New Deal was an imaginative but wholly necessary series of programmes enacted in America between 1933 and 1938. They were inspired and enacted by Franklin D. Roosevelt as the means of ending The Great Depression. It involved all the R’s – Roosevelt, Relief, Recovery, Reform and preventing a Repeat of another depression. Not only did it work but its legacy is still in place today, with the FDIC (Federal Deposit Insurance Commission) and the SEC (Securities & Exchange Commission) amongst several institutions set up at that time. Some learned people suggest that the suspension of The New Deal’s bank regulatory legislation (Glass-Steagall Act) in the 1990’s marked the beginning of our 2008 financial melt-down.

So why do we in Ireland need another New Deal? Are we not recovering and well out of our recession? “Keep the recovery going” – whatever recovery was going on, it wasn’t and isn’t lifting all boats. Many people were and still are drowning in a perfect storm of reduced income, higher cost of living and penal rental costs and for those lucky enough to earn a decent income, are unable to buy their own home. My moral compass puts homelessness as our No.1 priority demanding immediate State provision, but on a wider basis, we also have to address this basic income issue for everyone as well.

What can we do? Increase Social Welfare rates? Increase wages? Take more lower-paid out of the tax net? All well-intentioned measures, but they don’t address the kernel of insufficient basic income for all. We’ve seen the fear and anger and anti-establishment sentiment that were and are a major part of the Brexit and Trump seismic events. And there’s more coming down the tracks, with Marine Le Pen looking to join this motley crew in a journey to God-knows-where. Do we have to put all our hope and faith for the future in the hands of Angela? Geez, how times have changed.

Our Social Welfare system is creaking and arguably, no longer able to provide the comprehensive support structure that our complex society now needs. We have different schemes for different special circumstances – all well-intentioned and absolutely necessary. Disability benefit, job-seekers benefit and allowance, sick-pay, maternity and now paternity benefit are amongst those benefits intended to support those who cannot work. Now, new child-care measures are being introduced. Applications are submitted, considered, approved, reviewed and hopefully they are paid to people who need to put food on the table today – and not in the perhaps 6 weeks or more that these applications might take to process fully. Those interest groups who organise, lobby and get their act together to mobilise their voting power are the ones who go to the top of a long queue for scarce State resources. Those who are tired, not as organised in mobilising their voting strength and too disparate get diddly-squat. There are lots of special-interest groups in the latter, and that includes the disability community.

Parallel to this we have the world-wide change in working patterns. We have no such thing as a ‘job for life’ any more. Science-fiction type stories about robots, automatically-driven cars and artificial intelligence suggest that we’re leaving Kansas with Dorothy, with huge implications for work/leisure life balances.

That said, in comparison with other countries, Ireland has reasonable levels of support paid to children (Child Benefit) of €140 per month and to older people (Contributory and Non-Contributory Pensions of more than €230 per week). But there are all those rules and regulations – some of these benefits are taxable although unlikely to result in actual tax deductions, exemptions for non-pension income up to a certain amount, means-testing, blah, blah, blah. The Irish Social Welfare system is complex, however – what the State gives with one hand can be taken back later as a “claw-back” if circumstances change. All benefits are subject to reviews, audits, appeals and local political intervention. The DSP seems to protect the State’s financial resources like they were minding their own Communion money. Pity the banks’ auditors and Department of Finance regulators weren’t as careful with our assets.

Those earning a regular income have the joys of income tax, social insurance and social charges deducted from their gross income. Revenue uses a variety of acronyms to make these more familiar – PAYE, PRSI, USC, P2C and now LPT, PRD and whatever you’re having yourself. We have different rates and bands and – oh yeah – tax credits as well. Nearly forgot about those – very important in the overall calculation of your tax deductions. Credits sound good, we all benefit from those right? Eh, no, afraid not. If you earn less than €16,500 per annum, you don’t earn enough to make full use of these valuable credits where there is a use ‘em or lose em’ rule. So those earning the lowest incomes get the least benefit from these credits.

Some groups get more credits than others. Some personal expenses are allowable for tax purposes. Not everyone knows what I’m talking about here, which is another reason why many people are not availing of their full entitlement and are currently paying too much tax. And that’s without trying to explain how pension contributions are used as an effective tax avoidance measure. You can check out www.revenue.ie for all of this information.

So why don’t lower-paid workers, whether employed or self-employed, get a refund of their unused tax credits? Nope – that good idea has been rejected by our political leaders, a dreadful, mean-spirited decision. Instead, we have a tax system that has innumerable gaps, loopholes and special provisions that keep the tax consultants in business giving their expertise to those higher up the food chain so as to minimise the higher-earners’ statutory deductions. Nothing illegal of course – tax avoidance is the smart play when we have to look after our own situation, isn’t it? And woe betide you if you accidentally mention tax evasion. You’ll have the libel lawyers write to you quicker than you can spell “o-o-p-s”.

Let me introduce you to an old idea. Basic Income goes back a long way. From Thomas More’s Utopia and the humanist Johannes Ludovicus Vives in the 16th century, to Thomas Paine (one of America’s founding fathers) in the 18th century, the idea was promoted further by French political philosopher Montesquieu when he wrote: “The State owes all its citizens a secure subsistence, food, suitable clothes and a way of life that does not damage their health”. [See History of Basic Income on www.basicincome.org]. It was called Social Dividend when promoted in Britain in the 1920’s where a basic income payment was to represent the return to each citizen on the capital owned by society. And in the 1960’s, J.K. Galbraith supported James Tobin’s proposal for a ‘demogrant’ – a universal, unconditional payment made to all citizens. Martin Luther King’s economic dream was for the government to provide every American with a guaranteed, middle-class income (1).

So no, I’m not proposing a wild wacky new idea. In fact, back in 2000, our government promised to look into the idea for Ireland in An Action Plan for the Millennium, and they published a Green Paper in 2002. It is still available on the Taoiseach’s website (2). Since then, there have been several research papers written, in alphabetical order, by John Baker, Micheál Collins, Seán Healy, Eamon Murphy, Bridget Reynolds, Michael Taft and Seán Ward. As well as Social Justice Ireland advocating for this, there is another group of individuals, Basic Income Ireland, and there is a wealth of background reading on their website, www.basicincomeireland.com.

Earlier this month, Social Justice Ireland hosted a day-long conference: “Basic Income – Radical Utopia or Practical Solution?”(3). In my view, it is both a radical and practical new solution. In John Lennon’s words, let’s imagine . . .

For the purposes of this example, we are using €10,000 as the level of Basic Income that is paid to all adults, with a little extra to our older folk. This is a rounding-up of the current €188 per week job-seekers benefit. A Universal Pension can replace the contributory and non-contributory pensions. The only conditions for receipt is that you are alive and not in prison. You have the choice of taking up paid employment without any risk to losing this Basic Income payment. Mind you, you’ll be taxed – but isn’t that only right, as long as it is fair and reasonable with a progressive tax system in place where those on lower levels of income pay less than those on higher levels? We should want all citizens to be engaged with the cost of the State’s service provision, and the removal of lower-paid earners from the tax net does not achieve that. Indeed, those citizens who don’t pay income tax or USC are implicitly excluded by some commentators who repeatedly refer to “taxpayers” when they should refer to “citizens”. This reinforces the sense of exclusion or semi-detachment of a large group of citizens from such commentary. In truth, all citizens are VAT tax-payers.

Some have suggested that the payment of an unconditional Basic Income would act as a disincentive to work. Yes, there are bound to be a few, but how many people would choose to live on €10,000 alone? There are bound to be changes to work patterns, but with work patterns changing so much, it can only be positive to give citizens more security and freedom to live their lives of choice. The real stumbling block that has prevented this idea from gaining a wider audience and consideration is the cost. How can it be funded out of general taxation? The 2002 Green Paper suggested that a flat tax rate of 48% would be required to fund a Basic Income of €95 per week (just under €5,000 per annum). At that time the top marginal rate of tax/PRSI was 52.5%. Whilst this Green Paper contains discussion of the uncertainty and behavioural consequences, much of the monetary analysis is considerably out-of-date. Other studies have quoted various rates of up to 65%. I know I’m taking a bit of a risk of being ridiculed, but I’ve done calculations that show that by using an imaginative range of tax rates and bands, the State can fund this project whilst holding the top, marginal tax rate to 57%, up from the current 52%. This range of rates addresses many of the negative consequences listed in the Green Paper.

To do this in a revenue-neutral manner, this proposal uses a set of 4 tax and USC rates that result in a perfectly structured progressive tax system, where the effective tax rate starts off from a negative rate, up to zero and then evenly upwards to a rate of 50% for those on a gross income of €200,000.

Subject to further development of this model, and also subject to corrections due to certain assumptions and presumptions included here, this proposal’s figures show the following:

table of figuresCurrent 2016 figures are based on:

Tax Credit of €3,300, Standard Rate Cut-Off point of €33,800, Class A PRSI and Standard USC rates.

Next New Deal calculations are based on:

  • Basic Income of €10,000 paid tax free to everyone
  • No tax credit, 4 rates of Income starting at 10%, then 25%, 40% and top rate of 42%
  • Employee PRSI contribution added to new and higher USC rates of 5%, 10% and 15% with smaller bands
  • Initial USC rate of 40% on the first €10,000. This reflects USC becoming a Universal Social Contribution, helping to fund the universal Basic Income of the same amount
  • Employer PRSI to continue and increase to 15%, in line with other EU States, payable by employers and self-employed.

Note that Revenue’s PAYE tax and USC computer systems, together with most if not all current payroll software providers can cater for up to 5 rates of tax and 5 rates of USC.

So, what is this table is telling us?

  • If you earn €5,000 gross, your total nett income will be €12,500, inclusive of the Basic Income of €10,000, an increase of €7,500.
  • If you earn €50,000 gross, your total nett income is pretty much the same, just €40 lower.
  • If you earn €100,000 gross, your total nett income is just over €3,000 less than the current nett of €60,491.

But more importantly, look at the effective rate of deductions. This table shows that the new nett income starts at €10,000, with “negative” effective tax rates on earnings of up to €24,000. This means that an employee earning up to €24,000 receives more in Basic Income than they pay in tax and USC.

From that point onwards, an employee’s new nett pay continues to be more than the current system until they earn €50,000. After that, the employee is paying more tax/USC than now, with a more progressive tax system showing a gradual increase to an effective tax rate of 50% for employees who enjoy an income of €200,000.

So where’s the catch? Well, apart from the higher-earners’ small increase in their effective tax rates and employers paying a higher PRSI contribution, you tell me.

Who could complain about a new structure of Social Welfare and Tax/USC that provides the following benefits:

  1. Simple, equal provision of State resources to all its citizens
  2. Removes any possible stigma or loss of dignity of having to apply for Social Welfare benefits
  3. Provides a basic income that is sufficient to live frugally if not comfortably, plugging many poverty traps
  4. Allows citizens to exercise choice to pursue entrepreneurial or artistic enterprises in the knowledge that they will continue to have this basic income to tie them over
  5. Allows citizens to choose to take time from paid employment to spend unpaid time providing care to others, including children and older members of their family or other voluntary works
  6. Allows citizens the option to pursue further education or training with the comfort of maintaining a basic income for the duration of the course
  7. Allows citizens who are already in receipt of job-seekers benefit to pursue any possible employment, care or educational option knowing that their Basic Income is not at risk.

I’m sure there are many more benefits – can you think of a set of circumstances where someone you know can’t pursue their preferred course of action because of the imperative of either staying in their current lower-paid job or keeping their benefit entitlement?

On a wider basis, I’m told that there is research to show that raising the income of the lower waged has a really positive consequence on general health and well-being. Mental health is an obvious one here, with the reduction in poverty and stress. Not all poverty traps would be plugged with this New Deal, but it would certainly have a huge influence in guaranteeing an improvement for the most marginalised in our society, including the homeless.

Staying with the macro, the economy would enjoy a significant benefit from the additional spending power of those lower-waged citizens. Economists can help us here, but with an estimated €6bn increase in total nett pay of those earning up to €50,000, there should be a sizeable volume of additional spending, with extra VAT coming into the State’s coffers, extra employment, etc.

And don’t forget the possible elimination of or reduction in a raft of existing special purpose State benefits, such as illness benefit, student grants, enterprise support grants, amongst others. Lots of other benefits will of course be unaffected, such as the household benefits package, free travel, DCA, one-parent family payments, etc.

Figures available from Revenue have been used in this model to show that the State can afford to make this happen. Calculations have been made to compute the change in State revenues arising from this proposal. Rates and bands could be tweaked further to ensure that this remains revenue-neutral. These calculations would need to be reviewed and validated by eminent experts in this field. Those experts might also be able to put figures on the other financial consequences of this major far-reaching seismic change in public policy. But the structure of a Basic Income plus an imaginative use of tax and USC rates and bands can work.

Are we up for it? Have we, as a country, not shown a willingness and eagerness to embrace major changes in our lives – in my lifetime, we’ve had the EEC/EU, the euro currency, no-smoking ban, divorce, same-sex marriage, to name a few. We changed our PAYE system from the old tax tables and tax-free allowances to the current system pretty much overnight. To quote Obama, “yes we can” be progressive and radical. Remember that the proposed Basic Income of €10,000 amounts to only 55% of the average nett pay if you were on the minimum wage, so nobody will go wild on it. But it guarantees the ability to live frugally, without oversight or assessment by any State body or official. That has to improve one’s self-respect and, over time, it will allow every citizen to seek to pursue their preferred activities, paid and unpaid.

Once we guarantee this basic dignity and income to all citizens, then the State can continue to address its responsibilities to meet the needs of those who need extra, additional support – the homeless, the sick and the families affected by the additional cost of disability come to mind immediately!

The 2002 Green Paper quotes an article by Bill Jordan discussing the writings on Philippe Van Parijs (1992):

“Other commentators have argued for Basic Income as the only effective remedy for social exclusion, seeing means-tested social assistance schemes as are prevalent throughout the Developed World as creating a permanent underclass. A Basic Income system overcomes this problem by removing the poverty and unemployment traps, thus giving the excluded minority access to the market system of reward for individual effort, and secondly by giving everyone a universal share of resources on grounds of membership (citizenship), thus acting as a mechanism for including all in the common good. Seen in this light, Basic Income is a necessity to preserve democracy in the face of deteriorating social relations and withdrawal of participation by those who feel excluded”.

And that was written nearly 25 years before Brexit and Trump!

As a nation celebrating 100 years since the proclamation that promised so much, I submit that it is time for us to look at a better way of meeting the needs of our citizens – all of our citizens, equally and fairly and transparently. Let’s all start imagining . . .

 

References:

(1) Martin Luther King “Where Do We Go From Here: Chaos or Community” 1967

(2) Social Justice Ireland “Basic Income – Radical Utopia or Practical Solution?” Croke Park, 22nd November 2016 http://www.socialjustice.ie/content/civil-society-policy/social-policy-conference-2016

(3) Basic Income: Government Green Paper September 2002 http://www.taoiseach.gov.ie/upload/publications/1660.pdf

Author Bio

David Quinn is Managing Director of Pascal Software, is a member of the Board of Directors of Inclusion Ireland and is also a member of the Social Democrat party.

  • In a modern world, laws need to change and be made new to help people
  • People need freedom to decide what they want to do and have a good life
  • Rules should not just create barriers to prevent people marrying
  • It’s about support, information, rights, respect and happiness for people.

In an Ireland that twelve months ago voted for marriage equality, there is still a category of persons for whom having a relationship is not legally clear.

For people with intellectual disabilities, beside the usual challenges of meeting a significant other, there is an onerous legal shadow hanging over them in the shape of an archaic system and a more recent law that is nonetheless just as restrictive and prohibitive.

122 people with intellectual disability became Wards of Court in 2015 and if you are a Ward of Court, by virtue of the Marriage of Lunatics Act 1811, you may not get married. The intent of this Act is to ‘prevent the marriage of lunatics or any person under a phrenzy’.

For the majority of people who are made a Ward of Court, it is typically for financial reasons such as inheritance or an award of damages. The consequences of wardship, including this change in status, ensures that they cannot marry. This is often a source of anger, frustration and regret for individuals.

The good news is that this law is changing and being removed from our statute books when the long-anticipated Assisted Decision-Making Act 2015 commences, hopefully by the end of this year. Upon commencement, all individuals will be free to marry in accordance with law and provided they have capacity to do so. Marriage equality will be finally secured for all.

To marry you must have capacity and in general terms, capacity to marry is considered at a relatively low standard. As was decided in the famous Durham case “the contract of marriage is a very simple one, which does not require a high degree of intelligence to comprehend”, and the court described marriage as an engagement to ‘live together and love one another…. to the exclusion of all others”. This doesn’t represent a particularly high legal standard, but does represent a major life goal for many people.

If you are not married, have an intellectual disability and wish to have a sexual relationship then the law is not clear. In 1993, a law was introduced that was hailed as advancing the rights of LGBT persons by effectively decriminalising homosexuality, but was instead creating a new category of person to criminalise. The ‘mentally impaired’ person was created and that same act made sexual intercourse with that person a criminal act. There is no mention of capacity or consent; instead an abstract and arbitrary definition of ‘mental impairment’ is included that provides little clarity over who can and cannot enjoy a sexual relationship. There is one caveat to the law however, in that it does not apply to marriage, so a sexual relationship that could be considered criminal outside of marriage, is not criminal inside marriage.

As far back as 2005, The Law Reform Commission said that “a regrettable effect of (the law) is that, outside a marriage context, a sexual relationship between two ‘mentally impaired’ persons may constitute a criminal offence because there is no provision for consent”.

This tandem system is confusing and it is unfair. It does little to protect – as can be attested to by the paucity of case law. Where sexual assaults have occurred, they tend to be tried under mainstream sexual offences legislation, and that can prove challenging for survivors of abuse in giving evidence, something the 1993 Act was designed to avoid.

Two cases that were widely reported on in the media showed the inadequacy of the law from a protection perspective. In DPP V XY, a man was charged and acquitted of the oral rape of a woman with an intellectual disability. Because there was no evidence of intercourse, the accused was not charged under the 1993 Act and the Act he was charged under gave no regard to any mental impairment of a complainant. In his judgment Mr. Justice Barry White stated “It seems to me that the Oireachtas when they introduced the 1993 act did not fully appreciate the range of offences needed to give protection to the vulnerable”.

A second case, again widely reported on in the media involved a young woman with Down Syndrome from County Kerry. Again as the sexual act fell short of penetration there was no charge under the 1993 Act. The judge in the case made the decision that the woman was an unreliable witness and as a result the charges were dismissed.

Clearly the law fails in its intended protective elements, but concomitantly, self-advocates with intellectual disabilities report the restriction of their rights as adults to have intimate relationships including sexual intercourse. Through our advocacy work, Inclusion Ireland has experienced the negative impact of the legislation, with educators and advocates afraid to provide support or education to individuals with disabilities, for fear of encouragement of law-breaking.

Again, thankfully this 1993 Act is under review as part of Ireland’s ‘Roadmap to Ratification’  of the UN Convention on the Rights of Persons with Disabilities (UNCRPD), and it is anticipated that new legislation which more effectively protects, while also avoiding undue interference, will emerge before the end of the year.

Clearly the Criminal Law does not satisfy requirements of the UNCRPD and provides a barrier to people with disabilities enjoying relationships on an equal basis with others. Although the prosecutions under the 1993 Act are rare, the legislation has created a culture of fear and inactivity.

In terms of relationships, family planning and marriage, access to information and education can be a big challenge for many people with disabilities. People can be afraid to ask for support or information, doctors or other medical practitioners reluctant to provide services and other people who are in natural or paid positions of support may be afraid to offer information by virtue of the shadow of the criminal law. In June 2014, then Senator Katherine Zappone said that the law had created, a “chilling effect” where persons with intellectual disabilities within Irish society are fearful of forming relationships (The Irish Times, 10 June 2014).

Nonetheless, people with intellectual disabilities or extra support needs have identified relationships, sex, marriage and family life as important life goals for them. In a submission to the Law Reform Commission, the Connect People Network said “The law about sex and people with extra support needs is very important. The law affects some of the most important things in our lives”.

The UNCRPD requires States to take positive measures so as to ensure that people with disabilities have respect for privacy in family or home life (Article 22), and to take measures to eliminate discrimination in all matters relating to marriage, family, parenthood and relationships, on an equal basis with others (Article 23).

In its report on Sexual Offences & Capacity to Consent, the Law Reform Commission commented that this “may be considered to have particular application to women, and …that all persons, including pregnant women, irrespective of their disability status, are entitled to have access to age-appropriate information and reproductive and family planning education”.

Additionally, the Commission took the view that “the provision of appropriate educational support… should be a pre-requisite to (testing) capacity to consent to sexual activity” and additionally that “education programmes should deal with privacy, intimacy, assertiveness, empowerment, relationships and the ability to identify abusive or exploitative situations”.

Through its advocacy work, Inclusion Ireland has encountered many people providing sexual education and training to people with intellectual disabilities who regularly cite fears about the law as a barrier to delivering good education. Educators are afraid that they are encouraging people to break the law.

Relationships in general can be hard for people with intellectual disabilities. Barriers exist in terms of socialising, loneliness as well as marriage and having a family. The recent report of the Intellectual Disability Supplement of the Irish Longditudinal Study on Ageing (IDS-TILDA) reported in 2014 that people with intellectual disability are generally single and without children or grandchildren. The same report noted that socialising can be difficult for people with disabilities, particularly those in institutions. Socialising tended to occur with staff or other residents. Almost half of adults involved in the IDS-TILDA reported feeling loneliness.

Further barriers exist with people with disabilities and their interactions with the public. Public attitudes towards people with disabilities having sexual relationships or founding a family are mixed. An Inclusion Ireland survey in 2008 found 98% of people believed that people with intellectual disabilities should have the opportunity to live as normal a life as possible. This is an exceptionally high number and represents a positive sign, but when more specific questions were asked the numbers began to drop. When asked about the right to marry, the number decreased to 80% and while this is still high, it means that one in five people do not believe that a person with intellectual disability should have a right that other adults have.

In the 2011 NDA Attitudes survey, approximately eight out of ten respondents agreed that people with vision, hearing or speech disabilities or physical disability have the same right to sexual relationships as the general population. However the number was significantly lower with people with learning disabilities or autism, with just 51% in agreement that they have the same right to sexual relationships as everyone else. Furthermore, support for people with intellectual disability or autism to have children if they wish was recorded at 38%.

It seems counter-intuitive that people would hold an attitude that people are entitled to a ‘normal life’ but that this would not include marrying or having a family or that people would have the right to marry but not to have children, yet successive surveys demonstrate that this is a prevailing view.

Clearly there is significant work to be done, not only in amending the criminal law and protecting people’s rights to relationships, but also in improving the visibility and acceptance of people with disabilities as having choice over their sexual agency, as partners, as spouses and as parents.

Author Bio

Sarah Lennon is Training & Development Officer at Inclusion Ireland .

Simon Duffy
  • Disability is not a tragedy; it is a fact of life.
  • Sometimes people are labelled as having a disability and you can’t see the real person then.
  • Self-directed support means putting people in control of their lives and this started in California. Now it is all over the world.
  • There are a few basic parts of Self-Directed Support: Rights/Freedom/Participation/Citizenship
  • Unfortunately, most governments still don’t treat disabled people as full citizens.
  • In the past, too much money was put into institutions.
  • The person themself are the best person to make decisions affecting them.
  • Institutions change slowly whereas the person or their family can try new things and make changes quickly.
  • Government is not the best tool to make peoples lives better.
  • Obstacles to Self-Directed Support include: Fear of change / Bureaucratic inertia / Poor system design / Fear of cuts.

Disability is not a tragedy; it is a fact of life. But often people’s experience of disability can be tragic. Disabled children and adults, all full of wonderful gifts and passions, can be treated as if the only thing important about them is their impairment. For too many people this leads to lives that are limited by low expectations and controlled by institutional care services.

For more than 50 years disabled people, their families and allies have been resisting these prejudices and working to close the institutions that control them. Out of these efforts many helpful ideas have emerged, and self-directed support is one of those. Self-directed support means putting people in control of their lives and of the support they need to live as citizens.

The first examples of this started in California, where people with physical disabilities were given individualised funding to employ their own personal assistants. They also developed a shared system of support, called a Centre for Independent Living, where people could work together and also provide additional services.

Over time this good idea spread, although it has developed differently in different communities. In Canada, people with intellectual disabilities and their families were early champions of these ideas. In Germany this model is the dominant way of providing support to older people. In the USA there have been successful pilots for people with mental health problems. In England the idea has spread into children’s, health and education services.

There is no one perfect system, and there is a lot of confusing jargon: personal or individual budgets, resource allocation systems, brokerage, support planning, supported decisions, individual service funds and much more besides. But at the most basic level, there are probably four key features to any decent system of self-directed support.

Rights – Everyone of us has human rights, and in a decent society those rights are respected and protected in law. The welfare state exists to protect people’s social and economic rights. For example, disabled people need a budget in order to get the help they need to contribute to society. It is very important that budgets are clear and fair, so people get enough to live their life.

Freedom – We all need freedom and the ability to control our own lives. For disabled people, this means they need to be able to control their own budget and make decisions about their lives. For people with intellectual disabilities and others, this also means having support from family or others to help people make the right decisions for their life.

Participation – We live life by playing a full part in our community. For this reason, disabled people must be able to use their money to join in, get a job, get a home, and to spend time with friends and family. So any personal budget should not just be for services – it is vital that it can be used flexibly and creatively.

Citizenship – The point of all self-directed support is to enable people to be citizens. It is the combination of rights, freedom and an ability to join into community life means that the person is not only recognised as a citizen, but also that they can make a vital contribution to their community and the wider world.

If you think about self-directed support in this way, you can see that it is not just some technical change to a system of services. Nor is it just a new system of shopping for services. Instead it is a way of reclaiming the citizenship of each disabled person – as a full equal.

Unfortunately, most governments still don’t treat disabled people as full citizens. Instead, most still preside over a paternalistic welfare system that tends to treat people as if they are objects. But this is not working well; governments are struggling to cope. So the good news is that governments can now be persuaded to change their systems towards self-directed support, because they can see this might be a much better way of organising things.

In the past, too much money was invested in institutional solutions (day centres, care homes, hospitals and prisons). But these systems don’t lead to the best outcomes for people; they are often wasteful or even damaging. However, when people are offered the chance to exercise more control then they can begin to change how things work for themselves, and this can lead to better outcomes.

It is not hard to see why self-directed support improves decision-making:

  • People usually know what works best for them and their families;
  • People often know best what is going on in their life and in their community;
  • People will quickly stop anything that is not working for them.

It is probably the last point that it is most important. There are many excellent social workers and well-intentioned professionals. They are mostly trying to do the right thing and make good decisions, in the person’s best interests. Once a service or solution is set up, they tend to move on to the next person. But real life isn’t like that: we change things all the time; we reject things that have stopped working for us; we try out new opportunities; and we learn from other people’s successes or failures.

In other words, when we take decisions away from people and from those who are close to them, then we end up locking people into systems and supports that don’t change quickly enough. But, if we give people the power to say ‘no’ and to try something different, then things can keep getting better. This helps explain why self-directed support consistently shows better outcomes for disabled people in international research.

The potential benefits of freedom and control are profound. For example, Jonathan is a young man with intellectual disabilities and a chronic health condition. For 3 years before he used self-directed support, he was in hospital for 150 days due to severe breathing problems. This was because the many people supporting him (nurses, teachers and support workers) were never able to concentrate just on him. When an illness began it was identified too late, and serious health problems followed.

In the 3 years after his family started to manage his budget (funded by social services, health and education) he spent only 2 nights in hospital – both times for elective dental treatments. He had a dedicated team of staff who worked with him, and instead of going to college, he got a job in the building trade. He now has two City & Guilds Qualifications. When health problems begin, they are nipped in the bud immediately.

Over a three-year period, Jonathan’s new services saved the NHS, local government and the education system over £100,000 in hospital stays, over £300,000 in residential care costs and over £100,000 in educational funding. Getting things right is good for people and for the system.

You can think of self-directed support as one part of a much bigger change needed to modernise the welfare state, support citizenship and strengthen community. Disabled people are not the only group who face discrimination and whose lives are unduly limited and controlled. You could even argue that most of us are living in a society that doesn’t really make the most of our gifts and talents.

We still expect government to solve complex social or economic problems; but many of these expectations are unrealistic. Governments can do some things really well; but there are many things that governments can’t do. Governments can’t lead our lives for us, they can’t bring up our children for us, and they can’t take care of our communities for us. This doesn’t mean government has no role, but rather that this role is to ensure that we each have the resources necessary to lead our own lives, care for each other and contribute to the wider community.

This change will not happen naturally or inevitably, and there will be many obstacles. Change will only happen when disabled people, families and allies organise to exert pressure on the system to change. In order to do this it will also be important to think about the likely future problems.

 

Fear of change – Many people, especially those running large organisations, fear change. They do not want to be accountable to disabled people and their families. They have good intentions, but they see no reason to give away power. Some families or disabled people may also fear change, because change is unpredictable. So it is very important to offer everyone a positive vision of the future. Change is necessary, but we must also respect people’s different perspectives and experiences.

Bureaucratic inertia – Even if people accept the need for change, there is always a danger that the bureaucratic system will undermine the possibility of meaningful innovation and creativity. There is a natural tendency for systems to impose rules and controls, often based on people’s worst fears, and in the process strip away the real value of self-directed support. A common observation in the international research is that systems with high levels of flexibility work best; but often it takes hard work to persuade the system to respect this need for flexibility.

Poor system design – All the research on self-directed support shows that it helps people improve their lives. But some systems are highly efficient and effective, while others are too expensive and break down. We may not think that it is a bad thing to spend more money; but unfortunately, if spending is uncontrolled and unplanned, then the new system will be closed down. The smart thing to do is design a system that is efficient; this help keeps the pressure on the system to improve.

Fear of cuts – Many people think that self-directed support might be a good thing, but that budgets will be cut and that it is easier to defend institutional services. Certainly there have been severe cuts in England (although these have targeted both services and budgets). However the underlying problem is not individualisation, it is the fact that social care is not valued by the wider public. Cuts target social care because disabled people are not seen as valued citizens and the system is not seen as relevant to ‘everyone’. This is the key problem advocates must face.

One of the most encouraging international developments is in Australia, where after intensive campaigning by disabled people, called Every Australian Counts, the government has backed an overhaul of its disability funding system. The new system is better funded and based on the principles of self-directed support. Advocates argued anybody might become a disabled person, and when this happens everybody should be able to play their full role as a citizen.

It seems to me that this is how we should approach the topic of self-directed support. It should not be treated as a special system, only relevant for a few disabled people. Instead we should try to revolutionise our approach to disability. We should be outraged when people do not have a meaningful right to contribute to our communities. We should build the case for self-directed support based on human rights and a vision of a world where everybody matters, and where everybody has a role to make the world a better place.

 

SUMMARY

Self-directed support is a way of giving disabled people control of their lives and their support. It started 50 years ago and it works very well in lots of different countries, but it has not really come to Ireland yet. If disabled people and families want to have more control over their lives then they will need to work together to challenge and change the old system. In order to do this, it will be necessary to help other people understand that disabled people have a right to contribute to the community as citizens, and that we are missing out if they don’t.

 

References

Cowen A (2010) Personalised Transition – Innovations in health, education and support. Sheffield, The Centre for Welfare Reform.

Duffy S (2006) Keys to Citizenship: A guide to getting good support for people with learning disabilities, second revised edition. Sheffield, The Centre for Welfare Reform

Duffy S (2013) Travelling Hopefully – best practice in self-directed support. Sheffield, The Centre for Welfare Reform.

O’Brien J & Mount B (2015) Pathfinders: people with developmental disabilities and the allies building communities that work work better for everyone. Toronto, Inclusion Press.

Murray P (2010) A Fair Start. Sheffield, Centre for Welfare Reform.

Author Bio

Dr Simon John Duffy is Director of The Centre for Welfare Reform, and Chair of the Housing & Support Alliance and policy advisor to the Campaign for a Fair Society. Simon is also an Honorary Senior Research Fellow at the University of Birmingham’s Health Service Management Centre. Simon also acts as the voluntary coordinator of Learning Disability Alliance England.

The theme of the National Disability Authority’s Annual Conference (12th October) in Croke Park is ensuring the availability of mainstream public services for people with disabilities. The How Walkable Is Your Town? report took centre-stage at the launch by Minister Frances Fitzgerald…

It has been Government policy for the last fifteen years, and a legal requirement for the last ten years, that mainstream public services would be planned and delivered to include people with disabilities.

Opening the conference, Minister for Justice Frances Fitzgerald TD said that

“Hearing from people with disabilities, who have been driving the mainstreaming agenda, is a crucial part of today’s programme.”

At the conference she launched the report How Walkable is Your Town?, produced by Age Friendly Ireland in partnership with the National Disability Authority.  This report gives the findings of a series of ‘walkabouts’ by a diverse group of people at different stages in life, and including people across different types of disability, to identify examples of obstacles and good practice in the daily environment of our streets and towns.

Minister Fitzgerald said

“This report is an excellent example of practical research having a positive impact on the participation of people with disabilities in their local communities.”

She also welcomed the delegation from Northern Ireland led by Mr Stephen Farry, MLA, Minister for Employment and Learning – and spoke on the conference theme.  She added:

“I welcome the cross border focus of this conference and the continuous opportunities it presents for ongoing co-operation and learning between Departments and agencies in both jurisdictions.

Minister of State, Aodhán Ó Ríordáin, TD, (with responsibility for New Communities, Culture and Equality and Drugs Strategy) emphasised the Government’s commitment to including people with disabilities in the mainstream:

“The Government’s continuing commitment to mainstreaming is emphasised by the recent launch of the Comprehensive Employment Strategy for people with disabilities and the new round of public consultations on the development of a renewed National Disability Inclusion Strategy.

Minister Fitzgerald and I will continue to work with our colleagues across Government to deliver the necessary changes to allow for improvements in the lives of people with disabilities.”

The National Disability Authority’s Chairperson, Helen Guinan, said:

“After 15 years of mainstreaming as Government policy, there is still work to be done. We need to build on what has been achieved to date. Today we will hear a lot of great examples. This learning has to be captured and embedded across the public sector.”

The conference includes practical examples from North and South of the border of how disability is mainstreamed in designing and delivering different public services and how key enablers, such as leadership, good planning and cultural change, are critical in the process.

How Walkable is Your Town? – key points.

  • Delivering mainstream services to people with disabilities is established government policy since 2000, and is underpinned by obligations for public services that are set out in the Disability Act 2005.
  • The National Disability Authority, through its Centre for Excellence in Universal Design, provides guidance and support to the public sector on producing universally designed services. In 2014 the Centre worked with Age Friendly Ireland on Walkability Audits, to inform the development of an effective audit tool for Irish roads and streets. The audits were carried out as part of the 2014 Age Friendly Town Programme, using a Universal Design approach.
  • Walkability audits were conducted in eight Irish towns and urban centres. The result was the “How Walkable is Your Town?” report.
  • The key outcomes from these audits revealed that:
    • People were for the most part happy with the structures of their towns, which on the whole provided pleasant environments to walk in.
    • People were not as happy with poor design and maintenance of footpaths, obstacles on footpaths making it difficult to get around and the need for more pedestrian crossings.
    • The behaviour of people using the towns can really impact on how walkable the towns are, for example, people parking on footpaths, blocking crossing points and using accessible parking spaces when they shouldn’t.

Orlaith Grehan of Áiseanna Tacaíochta brings us on an inspirational journey, acknowledging pivotal moments in history and showing the crucial part that community plays in shaping our future.

Martin in front of Capitol building
Martin Naughton and his team travelled to America to travel the path of Martin Luther King Jr. in a bid to raise awareness of peoples rights here in Ireland. It has been 50 years since the famous Selma to Montgomery march, led by Martin Luther King and 25 years since the Americans with Disabilities Act (ADA) was passed.

2015 marks the anniversaries of two seminal events in civil rights and disability history which have shaped the way we all live today.

This year has focused world attention on the 50th anniversary of the historic Selma to Montgomery march, led by Martin Luther King, which united the civil rights movement in America by securing, at last, voting rights for the country’s African-American citizens.  It also celebrates 25 years since the passing of the influential Americans with Disabilities Act (ADA), ultimately brought about when disability activists took action in an event known as the Capitol Crawl to demand recognition of their equal rights.

For us here in Áiseanna Tacaíochta (ÁT), we wanted to not only pay respect to the courage and sacrifices of the people who inspired the progression of the rights that we hold dear and continue to fight for today, but to learn from them and to strengthen the bonds which loop between the rights movements here in Ireland and in the United States (US).

So, in late March, we left for American shores in our ‘Two Hearts Beat as One’ endeavour.  Although we were a small team – made up of our co-founder and Director, Martin Naughton, and his team of Personal Assistants (PAs), our Project Development Coordinator, Niall O’Baoill, and myself – we had big ambitions.  In a month-long, symbolic journey designed to connect with the key leaders and locations associated with these remarkable moments in time, we set out to honour the initiative and resilience of those who stood up – and continue to stand up – for full equality and human rights.

martin and his posseArriving in New York, we travelled down to Washington DC and on to Atlanta, Georgia, a landmark city in civil rights history.  There, we visited the Martin Luther King Center, met with disability activist and ADA campaigner Mark Johnson, and engaged with the National Center for Civil and Human Rights.

Moving on to Selma, Alabama, we commemorated the pivotal march to Montgomery by undertaking the full, 50-mile length of the walk ourselves over four days; with plenty of visits from disbelieving State Troopers and double-takes from locals who marvelled at the sight of our unusual group walking along the edge of a highway in thirty degree heat, it was quite the experience!  Arriving at the State Capitol building on April 4th, the anniversary of Martin Luther King’s death, marked a powerful moment for us all.

ann codyThe next week brought us on, then, to Washington DC, where we met with the influential disability activist – and current Special Advisor on International Disability Rights to the US Government – Judith Heumann, and delivered a presentation on Independent Living and the impact of the ADA in Europe to the State Department.  Making a stop in Philadelphia to meet with the Irish-American Congressman Brendan Boyle, we wound our way back to New York to gather with some truly innovative disability campaigners, before heading to our final destination of Boston, where we met with the Mayor, Marty Walsh.

So, why this journey at that time? Well, America holds a special importance for us, as it was there that our co-founder Martin, who had lived in institutions for people with disabilities up to that point, first experienced Independent Living while on a visit in the 1980s.  He brought the concept back here to Ireland, establishing the first Center for Independent Living (CIL) in the country in 1992, and continued on to eventually set up ÁT, the first organisation in Ireland to give complete control of individual budgets to people with disabilities and their families.  In their own ways, these marked vital milestones for the disability community in Ireland, ones which were guided and motivated by our Stateside peers; it was for this that we recognised the crucial opportunity to cement the relationships we have with them in this commemorative year.

Martin crossing bridgeBut, more than that, we wanted to raise awareness and support for a new, emerging movement for people with disabilities here in Ireland.  We shared our message and everything we encountered across social media as we travelled, calling on society to come together again and support a renewed cry for equal rights for disability communities everywhere as our journey went on.

That, in turn, led to us echoing and commending the values and experiences we came across in America in our A Declaration of Independence: The First Assembly event in Athlone in June.  Having looked to and met with those who generated their moments in time in America, we created our own, bringing hundreds of people with all types of disabilities and their communities together for the first time.

At the end of the day, it’s up to us to shape our own future.  Some of us may come from different backgrounds, live with different disabilities or come across different hurdles in our lives, but, at the core, we are all the same: we are all people whose rights are not being either recognised or realised, and we are the ones who, together, can turn that around.

martin and DAG

Those values grounded our journey to America, and will ground everything we do and seek to achieve each day.  Communities, when they come together, can spark a flame of change that genuinely brightens the future for us all.  By honouring those communities which did just that, we hope our journey throws light on their achievements, and ignites a united and rejuvenated determination to make equality, inclusion and independence the reality for every person with a disability in Ireland.

Author Bio

Orlaith Grehan is Communications Officer with Áiseanna Tacaíochta (ÁT).

Áiseanna Tacaíochta is the first organisation in Ireland to offer Direct Payments to people with disabilities and their families, enabling them to take control of their own budgets, their own services and, ultimately, their own lives.
 
For more information, please visit www.theatnetwork.com or call 01 525 0707.
 
More information and photos about the ‘Two Hearts Beat as One’ journey to America is available here.

Jeanette McCallion welcomes movement towards a community-based social care model, but cautions that complex medical needs among people with intellectual disability still require medical services, previously provided in congregated settings, to be maintained and improved in this environment.

Jeanette and Cliona
  • The RTE documentary on Áras Attracta was very difficult for anyone to watch, but especially when you have a close family member with ID.
  • The only good thing to come out of the footage is that it started to make people take more notice of the care given to people with ID.
  • There is lots of discussion about change, and closing down centres such as Aras Attracta to set up more homes in the community for people with ID.
  • I am in favour of this in general, but the ‘one size fits all’ approach will not work for everyone.
  • Unfortunately my sister has such severe seizures that she needs a nurse with her at all times.
  • Because the centres are no longer taking in new people, and without there being special nursing care houses in the community, she is without a service.
  • I hope that this will soon be noticed and those who need medical care get the services they need.

In December last I watched RTE’s Primetime Investigates on Áras Attracta, Bungalow 3.  Knowing in advance that the footage would be bad, I debated with myself whether I should make myself watch it or not.  The main reason for my unease is that my seventeen year old sister Cliona has profound ID as well as an extreme epilepsy syndrome that no seizure drug has ever been able to influence.   At some stage in the future Cliona will be in full-time residential care.  In fact, suitable full-time residential care within a local service not unlike Áras Attracta is our ‘holy grail’, something that we have been relentlessly pursuing for Cliona over the last few years.

Watching the documentary was particularly painful for me. I could not believe the brutal force and complete lack of respect I was seeing.  All I kept thinking was ‘this could be Cliona’.  I felt nauseous, and so, so angry.  The abuse so clearly highlighted in the footage cannot be blamed on cutbacks or staff shortages.   I watched staff members idly sit around texting on their phones and watching television, amidst sickening displays of cruelty, violence, and taunting of elderly women with profound ID.  I could not stop thinking about it afterwards.  As the media storm took over the following day, I wondered what sort of a country we live in to provide ‘services’ like these to our most vulnerable?  I was embarrassed to have trained in a health system where this kind of inhumane treatment could happen.  There followed lots of discussion by government ministers on whether this sort of abuse ‘could’ be happening elsewhere.  How could anyone be so sanguine as to believe that this happened only in one particular house, in one particular centre, in one particular county?  I think the entire country was ashamed and appalled.  But when you face a future where your most loved family member will one day depend on the care provided by this state, this footage takes on a whole new dimension.

I was heartened though, by the amount of noise and public outrage that ensued following the documentary.  At least there was talk about the state of ID services in this country.  Intellectual Disability is usually an area that struggles to attract media coverage and has not the same appeal as other areas for grabbing the public’s attention.  Unlike cancer it is always there, consumes lots of money, and will never be ‘cured’.  Cynics would also say that people with ID are low priority when it comes to funding, as they are a group of our population that cannot assert themselves through our democratic system.  Even within medical training, the area of ID is hugely neglected.  Although I trained as a general practitioner, over my many years studying and training on the job I did not get any specific training in this important, challenging and complex area that needs well-trained and interested doctors.  There should be specific training for doctors for some of the challenges that arise in looking after the complex needs of people with ID.

Another positive that arose from the awfulness of Áras Attracta was that it prompted me to attend the Inclusion Ireland AGM in April for the first time.  Up until then my entire focus was helping with the care of my sister, advocating for services for her, and not really contributing to the collective cause.  I now realise that I need to voice some of the difficulties and challenges we are facing with Cliona on a bigger stage, as I know that we are not the only family going through this.  I believe that families are so consumed with coming to terms with their child’s or sibling’s disability, as well as navigating the disability services, fighting cutbacks and knocking on closed doors, that they have no time or energy left to try to raise the issues on a more collective level.  I think it is especially important at the present time to become involved in advocacy for ID, as there seems to be movement towards changing the way care is provided.  And no-one can argue that change is not needed…  However, change needs to be carefully considered, and needs to remember everyone with ID, those with mild to profound ID as well as those with complex medical needs like my sister.

One term that I have become very familiar with in recent times is ‘decongregated settings’, which I understand to mean that new admissions to congregated-type centres will no longer happen, and that the current centres will be replaced by a community-based social care model.  The 2011 HSE policy ‘Time to Move on from Congregated Settings – A strategy for Community Inclusion’ outlines the detail of this plan.  I have read this report with great interest and I can see that there is good evidence from other countries to support this approach.  I clearly see that many people with ID could be better served if more closely integrated into the community.  However, the closed doors of the current congregated services have not been replaced by equivalent services in the community.  Furthermore, for those like my sister with complex epilepsy, or other medical needs there appears to be no discussion on how medical/nurse-led care will be provided in the community.

Currently Cliona is being cared for in the family home, with agency care staff paid for by the HSE through a private organisation, as there is no community nurse care available to her.  Because of limitations in the scope of the social care model around medication and seizure management, we as Cliona’s family have to be heavily involved.  My parents are in effect the house managers, and fill the gaps where a staff member cannot show up.  Each time new staff comes to the house, my parents try to train the carer on the complexities of caring for Cliona, and the different types of patterns she goes through.  The care-staff are wonderfully caring, and really seem to enjoy caring for Cliona, but often speak of how medically complex she is and question why she has not a nurse present with her.  They have had to manage some very severe and distressing tonic clonic seizures to the best of their ability.

What would I like for my sister?  Sadly Cliona’s seizures will never be cured, short of some miracle treatment for her unique type of epilepsy being developed.  I would like her to be accepted by a specialist ID service, either in a congregated centre with nursing care or in a nurse-led community house.  I am very concerned that the small percentage of people with ID who, like Cliona, also have complex medical needs, are being forgotten in the well-intentioned move to ‘Decongregated settings’.  Let’s not forget the minority within the minority; those with ID who also need clinical support for their complex medical needs.

Author Bio

Jeanette McCallionJeanette McCallion is older sister to Cliona, who is 17 years old and has a rare serious epilepsy syndrome with profound ID. She lives in Dublin not far from her parents and Cliona. Jeanette trained as a GP following her medical degree at Trinity College, and spent several years working in the Dublin hospitals and various GP practices around Dublin and Kildare. She is currently working in the area of Pharmaceutical Medicine. 

Geraldine McCabe details her experience of how the Irish education system is failing our children with Intellectual Disabilities. This article was originally a submission by Geraldine McCabe to the UN Day of General Discussion (DGD) on the right to education for persons with disabilities, held on 15 April 2015, at Palais des Nations, Geneva.

  • Geraldine McCabe writes to the United Nations about Inclusive Education.
  • Her daughter Shannon has Down Syndrome.
  • Geraldine sees difficulties for children with special needs in getting the opportunity to develop and contribute to society.
  • Shannon wasn’t allowed to take part in regular activities in school.

Introduction

My experience relates to my daughter Shannon- Shannon has Down Syndrome and her experience highlights the difficulties children with special needs have in getting the opportunity to develop and contribute to society.

My experience with Shannon is that the school system is unable to see past her condition to the vast wealth of skills and qualities that she has to offer, and that her school has limited opportunities for her by:

  1. restricting the manner in which our daughter could best participate in her Junior Certificate;
  2. refusing to let her take part in Transition Year with her peers;
  3. allowing her only to attend school on a part time basis, thus in effect suspending her;
  4. giving her access to Physical Education for only the last five weeks of the school year;
  5. never allowing her to attend extra circular activities within the school environment;

Children with special needs have a lot to offer, but education and related organisations frequently do not give them the opportunity to either develop the skills, or to get the qualifications, that they need to succeed.

Supporting The Child

One of the main purposes of education is to prepare children for adult life. To me, this means providing the child with:

  • the opportunities to get qualifications they need to succeed
  • the opportunities to develop and expand on the skills and qualities

that they need to succeed

  • the belief that they can make a contribution to society
  • the motivation to make a contribution to society

Providing the child with the opportunities to get the qualifications they need to succeed

A child may have a condition, but they should not be defined by that condition. They have so much to offer and this must be recognised. Frequently their condition, which is one aspect of them, eclipses everything and they do not get the opportunities to study/train for particular qualifications or they do not get the support they need to achieve these qualifications.

Unfortunately, factors such as the cost of providing these supports dictate the decisions a school will make when offering education to children with special needs. The child can be the casualty of this, when they do not get the opportunities that they need, to get the qualifications that they need, to meet their career goals.

Providing the child with the opportunities to develop and expand on the skills and qualities that they need to succeed

As mentioned, children with special needs are defined by the conditions that dictate that  they have special needs. These children can tend to be overlooked in education and training and may not get the opportunities needed to reach their potential. Children with special needs are like all children. They have strengths – these strengths need to be built on and celebrated. The child needs to be defined in terms of their strengths. Often it is not the case.

The child will have weaknesses. Schools need to take note of these weaknesses and rather than treat weaknesses as something negative, schools need to focus on weaknesses as opportunities for development. There may be factors that may work to threaten a child’s development. Identifying these factors is a positive thing but in the schools and training systems, staff can tend to use these potential threats as an excuse to give up. This has certainly been my experience. These factors need to be seen as barriers to development.

But like many barriers in life, there are ways to overcome them. Barriers should not be used as an excuse for giving up. Unfortunately my experience is that they do.

Providing the child with the belief that they can make a contribution to society

Every child has so much potential. However, many professionals in education do not see past the child’s condition, whatever it might be. The child must have belief in themselves. Their self-belief needs to be nourished, and they must be helped to realise that they have so much to offer. This self-belief is a very fragile and vulnerable thing. Staff in education play an important part in making sure that this seed of self belief is nourished, and that the child sees that he or she has a lot to offer.

Providing the child with the motivation to make a contribution to society

Following from the previous comment, the child needs to believe that he or she can succeed. Children can, if they are given the belief and faith. The school must have faith in the child. If it doesn’t, the child will not. Unfortunately, this was the case with my daughter. She has had countless barriers placed in front of her. Countless professionals in the education system have written her off and it is an ongoing struggle to offset the damage caused by this.

Observations on the Southern Irish Education System

In addition, I would like to make the following points about the infrastructure/system behind all this:

  1. There are many supporting organisations whose overwhelming concern is self-interest
  2. I would question the value for money benefit of these organisations
  3. The complaints/advocacy system does not work
  4. The system of support has ground to a halt in red tape
  5. The financial and emotional cost of advocating for your child is overwhelming

There are many supporting organisations whose overwhelming concern is self-interest, and there is no accountability or transparency from within the state system.

Indeed it appears that the Irish state are prepared to spend a huge amount of resources to make sure that a wrong continues to be a wrong rather than reviewing and amending  systemic failures within in the system. This of course ensures that civil servants will continue to be kept employed within a dysfunctional system, and that voices like my daughter’s will continue to be ignored and disregarded. After all, who really cares about the voice of a person with special needs, when it comes to their education? Inclusion is working after all!!!!

I do note that there are organisations set up to support children with special needs, but due to the nature of their funding, these organisations are more concerned with using their resources to get continued funding. There is no stability in this sector. Staff are recruited on short-term contracts, and there is no continuity. This has a very adverse knock-on effect on the quality of service delivered.

I would question the value for money benefit of these organisations

Vast amounts of money seem to be spent on services, but none of these resources seem to cascade down to the service users. Service users need career advice. They need to access training. They need to be listened to, and they need to be assisted to believe that they have a lot to offer. This does not happen.

The complaints/advocacy system does not work

I have tried to address deficits in the delivery of services, and it is very clear to me that the systems do not work. They are weighted in favour of the system, and the people in the system know how to use the system to fend off complaints. I believe that the only way forward is to streamline the system of educational supports, and simplify pathways leading to the related supports, to foster an individual pupil-centred approach.

However, my experience tells me that this approach will not take place in my lifetime and for children like my daughter, the failure of the education system has defined her – instead of being a meaningful member of her community, she is condemned to always being viewed as an outsider, with no currency value.

The system of support has ground to a halt in red tape

Parents wishing to make a complaint are made to jump through administrative hoops. Staff use jargon, procedure and avoidance of responsibility to stop or slow down the complaints process.

The emotional cost of advocating for your child is overwhelming

When a parent makes a complaint, he or she is fighting a system, and can be overwhelmed by the sheer size and scale of the system. It’s a case of David versus Goliath, but unlike this tale, it is the gargantuan system that inevitably wins. Parents are eventually worn down from fighting the system, and make a pragmatic decision to give up.

Conclusion

Schools and training organisations have a pivotal role in ensuring that children are prepared for adult life. This means we must provide children with the opportunities to get qualifications, to develop and expand on the skills and qualities that they need to succeed, and the belief and motivation to make a contribution to society.

Also, we need a re-pointing of these organisations’ direction and motivation, to place the student at the centre of their priorities, and improve value for money. We must overhaul or replace the complaints/advocacy system, and remove the bureaucracy and red tape surrounding support systems. The financial and emotional cost of advocating for your child is overwhelming for parents, and in this regard, schools ‘could do better’. A lot better.

Sarah Lennon assesses the progress of the proposed capacity legislation, and previews the impact that legislation will have on decision-making for people with an intellectual disability

  • Ireland is in the process of changing its law around how people make decisions.
  • At the moment we have an old law in place called the Lunacy Act under which people can be made Ward of Court and lose all of their rights to make decisions for themselves.
  • Inclusion Ireland has campaigned for many years to have the law changed and for people with capacity issues to be supported in making decisions.
  • These decisions could be about money, medical treatment, where a person lives or goes to work, travelling or voting.
  • Ireland is introducing a new law called Assisted Decision-Making.
  • This will improve things a lot for people with disabilities, their families and people who work in the area.
  • It will make it clearer who can and cannot make decisions and it will ensure that people with disabilities have a right to access support of their choosing in making decisions.

For those who have campaigned for modern capacity law through the years, there was an important milestone recently.  The Assisted Decision-Making (Capacity) Bill 2013 progressed through select committee stage – which is the third stage in a five-stage process of making law. Stages 4 and 5, called report and final stage respectively, are normally seen as procedural and there is genuine optimism that the end of the road is in sight.

It is fair to say that there was a sense of euphoria at the committee sitting at Leinster House on Wednesday, June 17th, not least because a mammoth 417 amendments were tabled, discussed and voted on.  The number of amendments demonstrated the seriousness of this legislation and the extent of the consultation on it.

Inclusion Ireland made many observations and submissions and were happy to see that very many of these asks were taken on board.

If enacted before the end of the year, it will mark the end of a two-year process, but that does not even represent the tip of the iceberg. Minister of State Kathleen Lynch remarked how she had spent two decades, both campaigning for change in opposition, and progressing the legislation as a junior minister.

Inclusion Ireland has been campaigning for a similar length of time for reform in this area.  The legislation that we have at present is not fit for purpose in a modern republic.

I was employed by Inclusion Ireland in 2006 on a project called ‘Who Decides & How’ to provide information and training, and to campaign for changes in capacity law. The law at this time – and today until this legislation is passed – was the Lunacy Regulation Act of 1871.

This relic of Victorian rule prevails today with over 100 people per annum with intellectual disabilities alone brought into a system called “Ward of Court”, typically because of inheritance of money, a settlement of a legal action, to facilitate the sale of a property or an injection of money into their lives.

The impact of being made a Ward of Court is huge, a person sees not only a restriction on their financial affairs but a restriction on travel, marriage and relationships, where a person lives and medical decision-making.

By any international human rights standards, and certainly by the United Nations Convention on the Rights of Persons with Disabilities, the Lunacy Act does not pass muster.

It has been almost a decade since I began working in this area and although there have been forays into law reform, the landscape is the same and although highly optimistic that we will get this Assisted Decision-Making Bill over the line, we have seen some false dawns in the past.

A genuine catalyst for reforming the law in this area began in 2006, when the Law Reform Commission followed their report on the elderly with a report into vulnerable adults.  The Commission recommended that our Lunacy Act, the system responsible for creating Ward of Court and all the restriction that goes with that system, be repealed.

The Commission also recommended that a ‘functional’ approach to decision making, one that looked at the particular decision at the particular time, be used rather than the ‘status’ approach of Wardship which declared a person incapable of all decisions and changed their status to lunatic, idiot or of unsound mind.

In the years that followed there has been a cascade of events that have led us to this point and Inclusion Ireland has been central to a lot of this work.

In 2007, Inclusion Ireland arranged for Michael Bach from British Columbia in Canada to speak at a seminar.  Professor Bach spoke of Supported Decision Making, the ‘right to decide’ of those who can only express their will and intent, and the concept of personhood being articulated by other people who were sufficiently knowledgeable to understand a person’s unique communication.

All of these concepts, while operational in British Columbia, were alien to an Irish audience where the 19th Century law prevailed as the only form of ‘adult guardianship’ and assisting or supporting decision-making was not available on a legislative basis.

In the same year Senator Joe O’Toole and Senator Mary Henry sponsored a Private Members Bill on Mental Capacity & Guardianship, borrowing heavily from the Law Reform Commission report.  This Bill lapsed shortly after initiation in the Seanad, as the Government intended to initiate legislation on the same topic and did so in 2008.  The focus of the law at this time was very much on substitute decision-making and guardianship, and while Inclusion Ireland welcomed the Bill, we stated at the time that the Bill did not go far enough.

At a conference in 2009, Inclusion Ireland commented that the focus of any capacity law should be on legal capacity and not mental capacity – we argued for the removal of terminology such as care, protection, best interest, guardianship and other paternalistic language.  It was a source of major frustration and disappointment that following the 2011 General Election, the Bill lapsed as a new government, with new ideas, came into existence promising to “introduce a Mental Capacity Bill that is in line with the UN Convention on the Rights of Persons with Disabilities”.

And in July 2013, the Assisted Decision Making (Capacity) Bill was introduced, having been championed by Minister for Justice Alan Shatter, Minister of State Kathleen Lynch and Chair of the Justice Committee David Stanton.

A significant consultation process commenced, almost two years passed and a genuine concern emerged that this Bill could go the way of the 2008 Bill and slip off the table quietly in the build up to the next General Election.

Inclusion Ireland organised a campaign to highlight the need to legislate, called ‘Fool Me Once’, using April Fool’s Day to draw attention to the offensive language in the Lunacy Act.  We were heartened by David Stanton’s comments on that day that the Bill’s return was imminent, and so it proved.

The Bill, along with 417 amendments was before the Justice Committee and what was clear was that a significant number of amendments put forward by Inclusion Ireland and others had been taken on board.

Although we have reached an exciting and pivotal point in the progress of law in this area, we are not yet at the finish line.  There are still elements of the Bill that are not perfect, with a concentration on mental or decision-making capacity rather than legal capacity prevalent throughout.

Inclusion Ireland remain concerned that there is no legal aid process in place for families or persons who wish to access decision-making representation agreements in court, although the Minister did commit to revisiting this matter.  Inclusion Ireland welcomed the expression that there would be involvement of the National Disability Authority and Citizen’s Information Board in developing codes of practice in the Act.  However, we will be advocating for the involvement of people with intellectual disabilities and other experts through experience in drawing up these guidelines.

What is clear is that the Assisted Decision Making Bill as amended will mark the end to a draconian Lunacy and Ward of Court system that caused misery for thousands of affected Irish people.

What this Act will bring will be a statement of the rights of people with intellectual disabilities to make their own decisions and a legal entitlement to the supports and assistance they need.  There will be an end to the informal and unregulated dilution or removal of persons with disabilities’ decision-making rights.  Ireland can make great strides towards ratification of the UN Convention.

For people with disabilities, their families and people who work with them it will mean that there is finally an answer to the question ‘Who decides, and how?’  After 144 years of the Lunacy Act, there is nobody who can say that it is not before time.

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 the many areas of work, changes in capacity law has 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’.

Mick Teehan introduces us to one college student who is realising inclusion and achievement in education.

Stephen Lyons is an active and popular student who has an intellectual disability in Tallaght.
Most peole take for granted that college is their right but for Stepehn and people like him things aren’t so easy.
Film-making is his passion and he hopes to learn as much as he can about the industry to improve his skills.
Stephen has a mentor called Lucy who supports him in class.

Meet Stephen Lyons, a student at the Institute of Technology Tallaght (ITT) who has travelled his own unique and difficult path towards achieving his goal of attending college and further developing his passion and skills in the area of Creative Digital Media. Stephen is highly regarded by his fellow students and lecturers alike and is described as being an active, contributing and popular student. However, his presence on campus is unfortunately the exception rather than the rule, due to the fact that Stephen has an intellectual disability. It is as a result of his diagnosis that Stephen has had to overcome a myriad of obstacles placed in his way, a fact that is not lost on his non-disabled peers, most of whom assume third level education to be a fundamental right afforded to all citizens.

At present in Ireland, less than 5% of individuals with a mild intellectual disability under the age of 35 have any type of formal educational qualification at all. Compare this with over 80% of the general population who, upon completion of their Leaving Certificate, will access either higher education or further education institutions. It has long been the case in this country that when individuals with an intellectual disability reach the age of 18, they are fast-tracked into a life within the confines of an increasingly overburdened health system. The fundamental right to access third level education, vocational training, adult education and lifelong education (as enshrined in Article 24 of the UN Convention on the Rights of Persons with Disabilities) is denied  to this already marginalised demographic.

It is internationally recognised  that lifelong learning is an essential requirement if the full participation and inclusion of people with intellectual disabilities is to be achieved. There is considerable international evidence to suggest that outcomes are greatly enhanced for people with intellectual disabilities who attend third level education. These can include significantly increased social networks, attaining paid & meaningful employment, enhanced self-esteem and self-identity, as well as the obvious improvements in an individual’s quality of life that the attainment of a formal qualification brings.

Upon leaving school at the age of 18, Stephen attended WALK’s Real Life Training Programme. This programme supports school leavers with intellectual disabilities to build their capacities within their local communities across the key areas of education, employment and personal development so that they may achieve their own self-determined objectives across these three domains. Real Life Training students such as Stephen are supported to develop and enhance their talents & opportunities for personal growth across a four-year individualised programme, which culminates in their transitioning out of the Health system and transferring either to paid employment or further education. The core elements of Stephen’s own transition plan was to develop his skills in the area of film making so that he can achieve his ultimate goal of securing employment in the film industry.

Stephen has long identified film-making as his passion and it is his dream to forge a career in this exciting but extremely competitive sector. He was supported in identifying a third level education as the obvious route towards enhancing his employment prospects, as well as developing his already considerable talents into genuine expertise. ITT’s Creative Digital Media Degree course appeared to have the ideal mix of practical and theoretical elements that would enable him to harness the knowledge and skills necessary to determine his own future.

Speaking of his time so far at ITT, Stephen says that he has really enjoyed meeting lots of new people who have been extremely welcoming and friendly. Regarding his upcoming enrolment on ITT’s Creative Digital Media course, Stephen adds “I’m hoping that I’ll learn some great new movie making skills. I hope to learn about green screen techniques and stuff like that as well as learning more about editing and sound so that I can use these skills to develop my movies”. Stephen adds that next semester he will be joining the drama society in ITT – he’s hoping to develop even more friendships through his involvement in this aspect of campus life.

WALK (http://www.walk.ie/), based in Walkinstown, Dublin 12,  is  an innovative, forward-thinking organisation whose mission is to empower adults with intellectual disabilities to live meaningful and self-determined lives within their community. WALK have developed their own approach to service delivery through their PEER mentoring programme. Peer-mentored support ensures that students such as Stephen can be viewed as pioneers that raise expectations, smash preconceptions and encourage other students with intellectual disabilities to achieve much more than was previously thought possible.

Sian Thompson from WALK, who supported both Stephen and his PEER mentor Lucy highlights the value of this model of support:

“When Stephen started at ITT he was nervous as he had no experience of higher education and wasn’t sure what to expect. Stephen’s nerves were quickly reduced by the excellent support he received from the outset from Lucy”. Sian adds that “Lucy supported Stephen on exactly what he needed to get to grips with the course (mainly note-taking), and supported Stephen to get to know other students in the class.

“Being a student from the College herself, other people from the course saw Lucy as a student, as opposed to a Support person. Lucy was also well versed in note-taking during lectures – so provided highly effective education-based supports too. Lucy’s support was invaluable in enabling Stephen to get to know and make friends in his class, to get involved in the broader life of the College, and to succeed in his first module within the College. Collectively this support has also enabled Stephen to gain in confidence, to build his skills to navigate the College campus, and the skills to follow his College timetable”.

Margaret Fingleton, Lecturer and Placement Coordinator at the Department of Humanities in ITT underlines the broader benefits of the programme:

“It was a very progressive piece of work to be involved with. As the placement supervisor for Social Care Students, I see this type of work an indication of where social care is heading and how important this type of learning is for the students. The piece of work that the student ( Lucy) undertook is underpinned by the social model of empowerment, inclusion and rights-based practice. The benefits were far-reaching, in that the college benefitted from having Stephen attend, students were open to supporting Stephen being part of the college community, staff were challenged in how best to support the initiative and the student that supported Stephen got the opportunity to be involved in a new and exciting piece of work”.

It is widely agreed that the fundamental right of people with intellectual disabilities to access third level education is a burning issue that can no longer be ignored. Both ITT and WALK share the same core values of developing inclusive, innovative services that ultimately support and empower individuals to be the best that they can be.  Both organisations recognise that the requirement for an inclusive model of Third Level education is gathering pace, and are working towards that.

Author Bio

Mick Teehan is Day Services Manager at WALK.