Monday, March 27, 2017
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Based on a presentation given to Inclusion Ireland, Dublin, 14th September 2016.

  • Ireland is still to ratify the United Nations Convention on the Rights of People with Disabilities.
  • Errol Cocks writes about Supported Living in Australia and Individualised Funding.
  • It is important for people with disabilities and their families to be in control and not government / NGOs.

In 2007, we started a research project to look at what we have called “individual supported living” (ISL). Our idea about ISL was based on Article 19 from the United Nations Convention on the Rights of People with Disabilities (UNCRPD). Many countries have signed up to the UNCRPD, including Ireland about 10 years ago, although I’m not sure that Ireland has yet ratified the Convention. Article 19 addresses the critical issue of the conditions under which people with disability live. It states that people with disabilities should have:

  • …the opportunities to choose their place of residence and where and with whom they live…and are not obliged to live in a particular living arrangement.
  • …access to a range of in-home residential and other support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community.

We wanted to challenge some of the common assumptions that contribute to people with disabilities in many parts of the world still living in institutions or other forms of congregate care such as hostels or group homes. Our research project was based on positive assumptions about community living, including:

  • If the right individualised supports are provided, all people with disabilities can live in their own home.
  • They do not have to be “independent” in order for this to happen – in fact who is really “independent”? – human beings are interdependent.
  • They do not have to live with other people with disabilities – unless they freely choose to do so.

In Australia, major reform of disability services, especially for people with intellectual and developmental disabilities, has been underway since the 1950s. The first “parent revolution” occurred in the 1950s and brought about some fundamental changes. This happened when parents became frustrated that their sons and daughters with disabilities were not welcomed into education and work. In Australia, and other Western countries, parents set up non-government organisations (NGOs) that sought community and political support to establish hostels, educational/day centres, and sheltered workshops.

 

Unfortunately, as parents became older, their influence waned as many of these NGOs grew much larger, much more formal and dominated by management. This growth was accompanied by substantial investment of financial, social, and political capital that is still a very powerful influence on how services and support are provided. Reform of many of these large NGOs is very difficult and sometimes strongly resisted. Even in 2016 in Australia, congregation of people with disabilities is still the dominant provision of living services – the Australian Institute for Health and Welfare reported data in 2016 highlights that 16,751 people with disabilities lived in group homes and 2,800 in institutions in 2014-15. These conditions make reform extremely challenging for governments and service providers – but far from impossible even if the intention and will is not there.

 

In Australia, major reform in disability policy and practice accelerated from the 1980s. Here, I will focus on what have been some of the major influences and types of reform. These are shared with other Western countries that have also committed to reforms.

 

  1. There is a contemporary parent movement that challenges education systems to include their sons and daughters, and employment systems to include them in work. At the same time, families are less willing for their adult children to be placed in congregate, institutional settings and they advocate for ordinary homes including individual supported living. Real reform is occurring through family use of “circles of friends”, “Microboards”, and small business/enterprise initiatives.
  2. Important social theories have strongly influenced disability policies and practices. These include “normalisation”, “social role valorisation”, “person-centred” principles and practices, and the “social model” of disability.
  3. In many parts of the world, the dominance of the medical approach to disability has been challenged. Here in my hometown, in the early 1970s, psychiatric nurses were replaced by workers called “social trainers” who were educated within a developmental/educational rather than a medical If people with disabilities were ill, they received appropriate medical and nursing care, but their lives were not governed by a medical framework.
  4. A related development was the separation of disability services from health and mental health. When I entered the disability field in the early 1970s, disability services were part of mental health services. By the 1980s, disability services were brought under an independent Disability Services Commission which enabled various reforms to occur.
  5. Finally, two innovations occurred in Western Australia around 1990 that have made a major contribution to reform of services and the development of individual supported living. The first was the establishment of Local Area Coordinators (LACs) who, at least in the first 10-15 years, received substantial training around the principles mentioned above and also with the involvement of family members and people with disabilities. This association of key stakeholders had many benefits in deepening the understanding of LACs about families and disability. At the same time, LACs were able to provide small amounts of discretionary funding to families that enabled small but important changes to occur such as provision of a ramp, or even a family holiday. This was the beginning in Australia of individualised funding, a powerful contribution to reform, enabling people with disabilities and their families to strongly influence and make decisions about their own lives. Individualised funding, if it comes under the influence of families and people with disabilities rather than flowing directly from governments to NGOs, is a critical strategy to enable people with disabilities to live in their own homes.

 

The aims of the Individual Supported Living (ISL) Project that we began in 2007 were to:

  • describe ISL for adults with intellectual and developmental disabilities in its different forms;
  • establish an evidence base for quality in ISL arrangements; and
  • provide education and training focused on ISL.

The project was funded by the Australian Research Council and ran across 3 States: Western Australia, Victoria, and New South Wales. We spent a lot of time learning about ISL by talking with people with disabilities, families, NGOs, and support workers and eventually produced a tool for measuring quality in ISL arrangements. We did this by having small teams (3 or 4) meet with people in ISL arrangements, their families, and support workers, and use the tool to assess quality aspects of each arrangement. An experienced person led the team and team members were provided with training. To date we have completed 120 reviews and intend to complete around another 145. So we are developing a very comprehensive description of different ways in which ISL arrangements occur and what they achieve in outcomes for adults with disabilities. This stage of the project will be completed in June 2017.

 

The quality tool we use has 8 key themes that include:

  1. Exploration of the role of leadership in setting up and maintaining each arrangement.
  2. Exploring aspects of home which includes issues such as security of tenure and how home reflects the person’s likes and dislikes.
  3. Providing the arrangement for one person at a time – no congregation of people with disabilities.
  4. How people in the arrangement plan, especially longer term planning to take into account changes that may occur.
  5. How the person and those close to the person control the person’s life and aspects of the arrangement.
  6. The kind of supports provided for the person, including both paid and informal support.
  7. The extent to which the person is thriving in the arrangement.
  8. How the person is experiencing social inclusion through relationships and social participation.

The adults in the Project with intellectual and developmental disabilities are a diverse group. About half of the people are female. They range in age from 18 to over 60 years. Length of time in the arrangements varies from less than a year to over 20 years. Almost a quarter of participants have high support needs. We have identified 5 types of ISL arrangements, each of which has more than one form: living with a co-resident (often the case with younger people), living in an intimate relationship, sharing a home, living with a host family, and living alone. Support is provided in many ways including formal, paid support, informal unpaid support, live-in and visiting support, and with the involvement of Microboards or circles of support. There are some key issues around the tenure of the person’s home. Tenure ranges from ownership, shared ownership, private rental, housing association/social housing, and family-provided home. We found strong evidence of the effectiveness of partnerships between formal and informal support.

 

We are currently planning the next stage of this research. This will shift the focus from ISL arrangements to people with disabilities who are living with their families or who live in group homes. Our aim is to use education and training based on our research so far and the ISL tool to encourage families and NGOs to explore the possibilities of individual supported living. We have some publications describing aspects of the ISL project and you are welcome to contact me if you would like information about these or other aspects of the Project.

 

In conclusion, individual supported living is clearly a positive way for people for adults with disabilities to be enabled to live good lives in their own homes. We believe this is a crucial direction to follow for reform of disability policies and practices. It is consistent with UN and other conventions and stated policies. Most importantly, it promotes the social inclusion and participation of adults with disabilities, contributes to a “good life”, and reflects a decent society.

Author Bio

Errol CocksErrol Cocks, MPsych PhD is a Research Professor at the School of Occupational Therapy & Social Work in Curtin University, Perth, Western Australia. He has worked in the disability sector since 1970.

Email – e.cocks@curtin.edu.au

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.

This article explores the experiences of participants of an Independent Living Skills Group: what they learned; how they learned it; and why decision making is so important in the context of the current Irish disability climate.

  • The government are noticing that it is very important for people with disabilities to make decisions about their lives.
  • A group of people with intellectual disabilities in Dublin came together because they wanted to improve their skills to be more independent at home or to be able to move out.
  • An Independent Living Skills Group was set up for these people to learn the skills that they needed.
  • People in the group learned a lot of practical skills but they said that the most important thing they learned was how to make decisions and that they can learn from each other.
  • This is important because the government wants to make new laws which will mean everyone gets to make decisions about their own lives.
  • Groups like the Independent Living Skills Group can help people to learn the skills they need to make decisions.

Before you leave the house every day, you have already made numerous decisions. You have chosen when to get up, you have chosen whether or not to brush your teeth, you’ve chosen what to wear, and you’ve chosen what to eat for breakfast. Without realising, you have made a significant amount of decisions. When you consider the amount of decisions you make during the time it takes to get up and leave the house in the morning, the amount of decisions made during a lifetime must be enormous.

 

Being able to make decisions is important. It shows that you are independent, responsible and that you have confidence in yourself. It has been identified that we learn how to make decisions by having opportunities to make choices and learn from our experiences. For example, if you decide to stay up late the night before you have to get up early, you feel tired the next day. The next time this situation arises, you may decide not to stay up so late to avoid feeling tired the next day. Therefore, having the opportunity to make decisions, whether they are considered wise or unwise, is paramount in developing decision making skills.

 

In Ireland, the importance of decision making for people with disabilities is slowly being recognised. The right to choose for people with disabilities is beginning to be recognised through the implementation of the New Directions Policy, as well as the promise of the Assisted Decision Making Act and the ratification of the Convention of Rights of People with Disabilities. The recognition of these basic rights suggests that Ireland is beginning to move from a paternalistic, custodial disability culture, to one which recognises the importance of informed decision making and equal citizenship for people with disabilities. Because of this, people with disabilities are beginning to take more control of their lives, as they are experiencing increased opportunities to make decisions. These developments led to the creation of the Independent Living Skills Group.

 

As a result of people with disabilities taking more control over how their lives are run, support workers and advocates in Dublin began to identify a cohort of people with intellectual disabilities who had goals of increasing their independence at home, or had goals to move into their own homes. Although there was significant motivation to achieve these goals, opportunities to develop the skills required did not exist. Therefore, in 2015 the Independent Living Skills Group was created to provide a space for people to learn the skills they required to increase their independence.

 

In 2015, 8 people with intellectual disabilities participated in an Independent Living Skills Group which occurred once a week for 16 weeks. This group was entirely member-led. During the first group session, members identified goals related to independent living, which they aimed to achieve through group participation. Group member goals included developing skills in cooking, budgeting and job seeking. Each week, group members selected group content and took an active role in planning the two-hour session. A piece of research was carried out during the group to explore the group members’ experiences of independent living and group participation.

 

Upon completion of the group, members participated in a group evaluation, which explored the group members’ experiences. Group members reported an improvement in independent living skills related to their initial goals. However, the most significant learning was identified in three key areas; decision making; recognition of the value of peer support; and the exploration of self through assuming group roles.

 

  1. Decision making – ‘making mistakes is okay, because that’s how we learn’.

 

The Independent Living Skills Group was framed by a ‘Will and Preference’ model. This model operated on the principle in that people have the right to make decisions regardless of if they are considered ‘unwise’. Due to this, group members made decisions which would result in ‘undesired outcomes’. These outcomes included burning pancakes; undercooking vegetables; and putting a piece of black clothing in with a white wash. As group members made these mistakes, they participated in group reflection to identify what had happened, and what they could do differently to facilitate their desired outcome. Group members began to identify how their decision making could result in their desired outcomes. On conclusion of the group, members identified these experiences as significant points of learning.

 

  1. Peer support – ‘The people kept me going every week because they all needed help and stuff. Yeah, because they know they can teach me and I can teach them and we can learn from each other. And that’s the best way of learning and it’s a good way to make friends as well.’

The Independent Living Skills Group was entirely member-led. Group members were responsible for selecting group content and planning each group. As a result, group members began to take ownership for group learning. Group members identified that they could learn from others, as they shared a lot of common experiences. It was recognised that group members could provide support and advise each other in relation to independent living goals in ways which the group facilitators could not. This was reported by group members as an empowering experience.

  1. Exploration of new roles – Beforehand I wouldn’t know how to, say, approach a problem or be more friendly with other people. And I know that I was friendly. But (now I can) be more funny’.

Group members took on a variety of roles throughout the duration of the group. These included the ‘joker’, ‘initiator’, ‘information seeker’ and ‘evaluator’, among others. Group members identified that they assumed roles which contrasted with those that they assumed in life outside of the group. Some group members reported assuming roles related to leadership and responsibility, while others explored roles related to humour and friendship. Members reported that an exploration of self and a sense of empowerment was facilitated through the assumption of novel roles.

Why is this important?

Through the exploration of group members’ experiences, it emerged that although the content of the group was important, the most significant learning occurred through group participation and interaction. By actively planning, participating in group activities and engaging in reflection, group members explored the impact of decision making and the experience of empowerment. These experiences were facilitated in an environment in which it was ‘OK to make mistakes’ and where reflection occurred following a decision making process. When contextualised in the current Irish disability climate, the findings of this research present an interesting point of discussion.

As Irish disability culture continues to evolve through the introduction of new policy and legislation, the population affected by these changes must also prepare for change. The findings from the Independent Living Skills Group identified that often, people with intellectual disabilities are not offered the opportunities to make decisions, let alone choose unwisely and make mistakes. This indicates that people with intellectual disabilities, when compared to the general population, have experienced fewer opportunities to develop decision making skills. Therefore, as the importance of informed decision making is being recognised, the decision making skills of those who are going to be making decisions needs to be explored, and opportunities provided to facilitate the development of decision making skills.

Not only did the Independent Living Skills Group identify the need for people with intellectual disabilities to develop decision making skills, it also uncovered a simple yet effective method of doing so. Decision making skills can be developed through group interactions which occur organically as a group works together to achieve meaningful group and individual goals. However, for these skills to be developed, an environment which both accepts that mistakes will happen and lets them occur, is vital. In summary, disability policy and culture is changing, and so must the people whom it will impact. If we want to keep up, we have to act now. Now is the time for people with intellectual disabilities to develop decision making skills through opportunities such as the Independent Living Skills Group where it is ‘OK to make mistakes because that’s how we learn’.

Author Bio

Eve RoseingraveEve Roseingrave is an occupational therapist who recently completed a masters in Trinity College, which explored the concept of Independent Living through the perspectives of people with intellectual disabilities and advocates from the National Advocacy Service.

If anyone would like further information on this group or has an interest in setting one up, contact Eve on roseine@tcd.ie

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.

  • Disability is a concern when deciding whether a person can be a good parent
  • A parent’s disability should not be the only thing that stops them being a parent
  • Being exploited may stop them being a parent too
  • Social workers need to be consistent when deciding whether a parent can be a parent
  • Courts need to help people get the support they need to be a parent.

In late 2015, the Child Law Project published its final report. This was a three- year project, where the team of lawyers and academics, led by journalist Carol Coulter, sat in on over 1,200 child care cases.

Whenever an order was being sought – in other words, where the State was moving to take a child into care, or to heavily supervise their care in the family home – the report found that 15.4% of the time, the reason for seeking the order was parental disability (intellectual, mental, physical). Shockingly, this was the most frequently cited reason for seeking an order. Neglect, at 15.3%, was the second most frequently cited reason.

The prevalence of disability as a reason for seeking an order is of huge concern. It raises questions about whether parents in this group are receiving adequate supports, whether social workers are educated about the kinds of specialist supports that are required, and whether these parents face a bias on the part of some social workers in relation to their parenting ability.

On a legal basis, it also raises the question of whether the rights of the parents are being breached. Disability as a single ground for initiating child care proceedings would be a clear breach of the Equal Status Act 2000. Plus, if a parent with ID is more likely to come before the courts in these kinds of cases, then it has to be asked whether those individuals are being discriminated against.

The reports found that at 10%, the single biggest factor leading to a case coming to court was the mental health of one or both parents. In almost 7.5% of the cases, the parent – usually the mother – had a cognitive disability. The authors felt that this was likely to be an under-representation as in some cases where alcohol or drug abuse, or severe neglect dominated the proceedings, undiagnosed cognitive disability was likely to have been a factor.

The authors also found that there was a haphazard approach to the diagnosis of these cognitive disabilities. They frequently saw cases where the issue arose in the middle of the hearing.

Parenting capacity assessments would sometimes be carried out before a cognitive assessment: the authors noted that when this happens, and if the person’s cognitive capacity is not taken into account, then they are bound to fail a conventional parenting capacity assessment. On another occasion, a report on the cognitive ability of a parent was referred to, yet it had been carried out years previously and prior to the person becoming a parent.

The matters that the authors saw before the court also raised issues in relation to the sexual exploitation of women with reduced cognitive ability:

“There are also cases where a person’s cognitive ability is so impaired that it is unlikely she can ever parent a child, no matter what level of support is offered. We have attended a number of cases where the court has heard the mother in the case had the mental capacity of an eight or nine year old, and evidence was also given of her likely victimisation through sexual exploitation. This raises wider issues relating to the protection of vulnerable adults as well as children.”

The report also found that 74% of the parents were parenting alone. As the authors pointed out, “Parenting alone is difficult for anyone, even those of full ability and with strong social networks. As we have seen, many of these parents suffered from disabilities or addictions, and our reports show that they also often suffered from social isolation, so were particularly vulnerable.”

A stark picture emerges of cognitive vulnerability, both in the parents and the children in these cases, and in particular single mothers (30% of the respondents). As the report notes, “the prevalence of disability and ethnic minorities among the respondents raises questions about the provision of services to these groups”. Later it notes, “again and again, questions were raised about the availability of such services”.

Case study

In a District Court hearing, a full Care Order for two sisters was granted. The sisters – both teenagers – had not been attending school. Their mother had limited cognitive ability and mental health problems. She was parenting alone.

The mother’s barrister raised the issue of her cognitive impairment and whether this was taken into account by the social workers. An education and welfare officer had called to the house of the mother to inform her about her legal responsibilities in relation to sending her children to school. In court, he was asked if he was aware that the mother had a borderline intellectual disability: he said he was not aware.

It turned out that the officer was aware that the mother was attending mental health services, but he did not take the initiative to get a cognitive assessment of the mother because “I was aware she was attending other services. That is their area of expertise”. When asked if he ever checked out the mother’s capacity to understand what was required, he said no.

A blatant lack of communication across the services, joined-up thinking, or case management comes across clearly in this.

When a cognitive assessment was carried out, on the instructions of the Child and Family Agency, the psychologist found that the mother was at the fourth percentile of cognitive ability, meaning 96 per cent of the population would have a higher ability. The psychologist commented:

“Her concrete style of thinking was very black and white. If the child said she was sick and could not go to school, it meant she could not go to school. She could not question how sick she was. I would have big concerns about her insight into safety issues with her children.”

The psychologist also found that if the mother was given a number of tasks, she would find it difficult to prioritise and to follow instructions. The mother’s barrister asked if the mother could manage if the tasks were presented in simplified language, one task at a time: the psychologist said yes.

On the other hand, in the same case, the supports that were provided didn’t have sufficient impact. The view of the psychologist was that the social workers did as much as they could in the circumstances. The following is a number of questions put by the mother’s barrister to the psychologist:

Barrister: “People on the fourth percentile can have and raise children?”

Psychologist: “Absolutely. It depends on what supports they have and also what is going on in the rest of their environment.”

Barrister: “If supports were put in place for the mother that may be of assistance for her?”

Psychologist: “It may be. But I understand that she did receive a number of supports.”

The court report went on to summarise the psychologist’s position:

The psychologist’s report said 24-hour parenting support would be necessary, that is, someone on call all the time. It would be difficult for the children to have all their needs met. There had been numerous social workers calling but change, while it occurred, was not sustained. Abstract thinking was very, very difficult for the mother.

Referring to the mother changing, she said: “My concern is, how long do her daughters have to wait? The question is whether the change is long-term, consistent, and how much change. I saw the social workers give instructions, model the instructions, repeat them. It suggests that when someone is there with her on a one-to-one basis she can make some changes. I don’t know how sustainable they are. Her capacity to change does not match the children’s changing development needs as teenagers.”

The teenage siblings went from living fulltime with their mother, to being together in foster care. Access included lunches and shopping trips with their mother, plus phone contact. The social workers wanted to reduce access to one hour per week with a support worker present, and they also wanted to reduce phone contact. It is not explicit in the report why this was required, though there was an implication that the girls, particularly the elder daughter, were shouldering their mother’s problems.

Giving her decision, the judge said: “The mother is not capable of doing what she needs to do in a time-frame that meets the needs of the children. The sad thing is that for a period of time the children were more than adequately cared for by their mother. But due to her cognitive ability she was not able to meet their needs as they got older.

“She is one of the best-intentioned persons we’ve seen here. We all want to put the best side out, but at the time they came into care the children were suffering from neglect. I will grant full Care Orders until B completes her Leaving Cert. I want a review every year, including of where the children live.

“In relation to access, what is happening in [the child and family centre] is very cruel. Access is not for the mother, it is for the children. The mother did work with [the local social services] but by the time of the assessment she had slid back. That is why [the centre] made the recommendations it did at this time.”

She made a direction under Section 47 that the children receive therapeutic support relating to their being in care, access visits and their relationship with their mother, in line with recommendations from the GAL. In four months’ time the court would deal with access, after-care and therapeutic supports.

“I want the mental health services to provide all the supports needed by the mother. She’s been absolutely marvellous. She attends all appointments, obeys all instructions. I look forward to positive news about what happens in the future,” the judge said.

Author Bio

Kate ButlerKate Butler BL is a practising barrister and a board member of Inclusion Ireland, a representative group for people with intellectual disabilities. She is available to give talks on this topic.

Parents and parenting with intellectual disabilities

  • Intellectual disability is a poor indicator of parenting competence
  • Many children brought up by parents with intellectual disability fare well
  • Parents with intellectual disability can learn and maintain new parenting skills
  • Services are generally ill-equipped to support parents with intellectual disability
  • Many parents with intellectual disability are thwarted by poverty and prejudice

In the early part of the 20th century, persons with intellectual disabilities[1] found themselves treated as social pariahs. By some accounts, the ‘feeble-minded’ were moral degenerates and the root cause of society’s ills. Allowing them to reproduce was for many, at that time, unthinkable. Eugenic sterilisation was legislated and vigorously implemented in many jurisdictions “for the protection and health of the State” (see Buck v Bell, 274 US 200). The discourse has changed radically over the last 100 years.  Today, the right of persons with disabilities, including persons with intellectual disability, to “marry and found a family” is affirmed in the United Nations Convention on the Rights of Persons with Disabilities (2006). Under Article 23, States Parties are required to take “effective action” to “eliminate discrimination”, and to render “appropriate assistance” to persons with disabilities in the performance of their child-rearing responsibilities.

There are now 400-plus published empirical studies on the topic of parents and parenting with intellectual disability (IASSID Special Interest Research Group on Parents and Parenting with Intellectual Disability, 2008). The earliest studies in the field addressed the question of heritability. These studies found that, although intelligence is influenced by genes, the vast majority of children born to parents with intellectual disability have ‘normal’ intelligence (e.g., Brandon, 1957; Reed & Reed, 1965). From the 1980s onwards researchers turned their attention to the support and learning needs of parents with intellectual disability, and more broadly, the determinants of parenting and child outcomes.  This research has enriched our understanding and dispelled numerous myths.  In this brief report, we outline some important messages from this research.

For an excellent introduction to the topic, see “Parents with Intellectual Disabilities: Past, Present and Futures” (2010, edited by G Llewellyn, R Traustadottir, D McConnell and H Sigurjonsdottir, Wiley-Blackwell).

Parents with intellectual disabilities: Who are they?

The International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD), Special Interest Research Group on Parents and Parenting with intellectual disabilities (2008), identifies three discrete groups of parents. The first and numerically smallest group includes parents who had been institutionalised but now live in the community. The second group comprises parents who were never institutionalised but have received services designated for persons with intellectual disabilities more or less continuously throughout their lives. The third group, described as the hidden majority, includes parents who may have been labelled as being a ‘slow learner’ or ‘developmentally delayed’ during their school years,  but on leaving school managed to get by with little or no formal support, that is, until they had children.

Message 1. Intellectual disability is a poor proxy for parenting competence

One consistent research finding is that parents with intellectual disability are diverse with respect to parenting skills. There is general agreement among researchers in the field that, above an IQ score of 60, no systematic relationship exists between IQ and parenting competence (Andron & Tymchuk, 1987; Budd & Greenspan, 1984; Dowdney & Skuse, 1993; Feldman, 1986; Tymchuk, 1990).  As far back as 1984, researchers had reached the conclusion that “few generalisations can be made about the parenting abilities of mentally retarded women”, therefore “each family deserves to be examined on an individual basis for specific child-rearing strengths and weaknesses” (Budd & Greenspan, 1984, p. 488). Furthermore, the available data suggest that any parent with intellectual disability may demonstrate competence in one domain (e.g., sensitive responding) or period of child development, but struggle do so in another. The implication is that parenting competence is not a stable individual trait.

The question then is: how can the observed variation in the skills or competences of parents with intellectual disability be explained? The available data suggest that the learning opportunities and support afforded by the environment, which may be competence-inhibiting or competence-enhancing, is one key determinant (Booth & Booth, 1994; Tucker & Johnson, 1989; Llewellyn & McConnell, 2002). Another is the complexity and intensity of the childcare workload.  That is, the observed variation in parenting performance may be explained, at least in part, by variation in parenting demands (e.g., demands associated with child behaviour problems). A third key determinant is parent health, including physical and mental health, and health behaviours: Poor nutrition, sleep deprivation, depression and so on can impair parenting performance.

Message 2. Parents with intellectual disability can learn parenting skills

There is unequivocal evidence demonstrating that, with appropriate instruction and support, parents with intellectual disability can learn parenting skills. [For excellent reviews of the parenting training research in the field, see Feldman (1994) and more recently Wade, Llewellyn & Matthews (2008)]. The evidence comes from 30 ++ studies, employing single-system, quasi-experimental and randomised controlled trial designs, to investigate the efficacy of various parenting interventions. This research, conducted mostly in North America, England and Australia, has documented positive outcomes with substantial effect sizes in areas such as basic childcare, child health and home safety, and parent-child interactions (Feldman, 1994, 2010; Llewellyn, 1990; Llewellyn et al., 2010; Tymchuk, 1992).

Interventions that have demonstrated efficacy share a number of common features. Firstly, effective training is usually delivered in situ, e.g., in the family home, where new skills will be applied. Second, effective training is tailored to each parent’s individual learning needs and priorities, usually based on a competency-based parenting assessment (see Feldman & Aunos, 2010). Third, training incorporates behavioural teaching strategies including modelling (i.e., the parent is shown, and not merely told ‘how’); opportunities for practice, ideally in a variety of activity settings to promote generalisation; the use of prompts as needed to elicit correct performance; the positive reinforcement of correct performance, usually with praise; and the gentle correction of errors. Video-feedback intervention is also showing promise (Hodes, Meppelder, Moor, Kef & Schuengel, in press).

Message 3. Health and wellbeing outcomes for their children are mixed

Most children born to parents with intellectual disability appear to fare well, often despite early disadvantage [see Collings and Llewellyn (2012) for a useful review and synthesis of the research on child experiences and outcomes].  Notwithstanding, parental intellectual disability is associated with a heightened risk of developmental disabilities, speech and language delays, emotional and behavioural problems, and accidents and injuries (Emerson & Brigham, 2014; Feldman, McConnell & Aunos, 2012; Llewellyn & Hindmarsh, 2015; McConnell, Llewellyn, Mayes, Russo & Honey, 2003). Familial transmission is one contributing factor. Pre-natal exposure to toxins, pre-term delivery and low birth weight may be another (Höglund, Lindgren & Larsson, 2012; McConnell, Mayes & Llewellyn, 2008; Mitra, Parish, Clements, Cui & Diop, 2015). A third factor is developmental deprivation. Without appropriate support, parents with intellectual disability, on average, interact less with their children compared with their peers, and may afford less safe, supportive and stimulating home environments (Aunos, Feldman & Goupil, 2008;  Feldman, Sparks & Case; 1993; Keltner, 1992; Keltner, Wise & Taylor, 1999).

The relationship between parental intellectual disability and child developmental deprivation is however confounded by contextual influences including parent life-history and exposure to environmental adversity. Parents with intellectual impairment are more likely to have experienced trauma in their own childhoods:

  • to be single parents, unemployed and living in poverty, in poor housing and in deprived neighbourhoods;
  • to have few social supports; and
  • to suffer from often unmanaged chronic physical and mental health conditions (Aunos, Feldman & Goupil, 2008; Emerson & Brigham, 2013; Feldman, McConnell & Aunos, 2012; Llewellyn, McConnell & Mayes, 2003; McGaw, Shaw & Beckley, 2007; McGaw, Scully & Pritchard, 2010).

Few studies have attempted to isolate the effect of parental intellectual impairment from such contextual influences. One recent population-based study found that the increased risk of poor developmental health associated with maternal intellectual disability could be explained, in large part, by socio-economic disadvantage and low maternal social support (Emerson & Brigham, 2014).

Message 4: Many parents with intellectual disability have their children taken from them by child welfare authorities

The harsh reality is that many parents with intellectual disability have their children taken from them by child welfare authorities. While the population prevalence of intellectual disability may be no greater than one percent, parental intellectual disability or ‘cognitive impairment’ is documented in approximately ten per cent of child maltreatment investigations, and more than twenty per cent of investigations that result in child apprehension and out-of-home placement (Booth, Booth & McConnell, 2005, Llewellyn, McConnell & Ferronato, 2003; McConnell, Feldman, Aunos & Prasad, 2010, 2011; Tossebro, Midjo, Paulsen & Berg, in press).

The over-representation and differential outcomes for children of parents with intellectual disability in child maltreatment investigations is not easy to reconcile with evidence showing that (a) the association between parental intellectual disability and parenting competence is not strong, and (b) that with appropriate training and support, most parents with intellectual disability can learn and maintain parenting skills, with concomitant benefits to their children. A partial explanation for the high rate of state intervention into these families is the clustering of other ‘risk and vulnerability factors’ together with parental intellectual disability, including but not limited to poverty, social isolation and mental health issues (McConnell et al., 2010, 2011).

The chief factor contributing to the over-representation of children of parents with intellectual disability in the out-of-home-care system, is the lack of suitable supports and services. Research has uncovered a number of barriers to, and deficiencies in the planning and delivery of services to parents with intellectual impairment and their children (Clayton, Chester, Mildon & Matthews, 2008; Goodinge, 2000; LaLiberte, 2013; McConnell, Llewellyn & Bye, 1997; Wade, Mildon & Matthews, 2007; Ward & Tarleton, 2007). These include but are not limited to:

  • The conflation of parental intellectual impairment with perceived parenting deficiencies, resulting in a failure to consider plausible alternative explanations for any perceived deficiencies (e.g., environmental pressures) and, the wrongful assumption that parenting deficiencies are irremediable;
  • Shortcomings in the assessment of parenting capacity and support needs, including the tendency to focus on (a) parent traits, such as IQ, instead of how parents and children function together in their environments; and (b) parenting deficits, instead of their strengths and how to build on them;
  • Resource-led service planning in which parents are fitted into existing services rather than services being designed to fit their needs. This process of planning tends to be program-driven rather than citizen-centred, allowing little scope for parent participation;
  • Failure to utilise evidence-based parenting training strategies (i.e., ‘what works’ for parents with intellectual impairment). All too often parents with intellectual disability are referred to programs that fail to accommodate their learning needs;
  • A blinkered focus on parenting training, resulting in the neglect of other potential parent needs, such as the need for trauma, grief and/or relationship counselling, health care (e.g., mental health and addictions), safe housing and financial aid, and positive social relationships;
  • A lack of flexibility with respect to support intensities and service timeframes. Many parents with intellectual impairment may need intermittent support, of varying intensity, over the long term. A related concern is that families often have to wait until a crisis erupts before services respond;
  • Lack of co-ordination across services, resulting in many parents with intellectual impairment either ‘falling through the cracks’ or an overwhelming number of agencies and workers involved with the family, each placing different and sometimes competing demands on the parents.

Parents and parenting with intellectual disabilities: New directions

In conclusion, we are today witnessing a historical shift from a focus on individual deficits (presumed parenting deficits of parents with intellectual disability) to a focus on systems deficiencies. The question is, “how can we build systems’ capacity to support parents with intellectual disability and promote a healthy start to life for their children?” This reflects the understanding that the difficulties experienced by many parents with intellectual disability have as much or more to do with our failure to offer broad-spectrum, evidence-based supports, than it does with intellectual disability per se. This shift is evidenced, for example, by Australia’s Healthy Start strategy, a federally funded initiative, led by consortium partners, the University of Sydney and the Parenting Research Centre, to build national capacity to improve health and wellbeing outcomes for children whose parents have learning difficulties.  The Healthy Start website (www.healthystart.net.au) is an excellent place to start searching for information and resources to support professional practice. The site includes a wealth of information,

References

Andron, L. & Tymchuk, A. (1987). Parents who are mentally retarded. In: C.A. Craft (Ed.). Mental Handicap and Sexuality: Issues and Perspectives (pp. 238–62). Tunbridge Wells: Costello.

Aunos, M., Feldman, M., & Goupil, G. (2008). Children of mothers with intellectual                disability: a link between home environment, parenting abilities and children’s behaviours. Journal on Applied Research in Intellectual Disability Special Issue, 21(4), 320-330.

Booth ,T., & Booth, W. (1994). Parenting under pressure: Mothers and fathers with learning difficulties. Buckingham, UK: Open Press University.

Booth, T., Booth, W., & McConnell, D. (2005). Care Proceedings and Parents with Learning Difficulties:  Comparative Prevalence and Outcomes in an English and Australian Court Sample. Child & Family Social Work, 10, 353-360.

Brandon M. W. G. (1957). The intellectual and social status of children of mental defectives. Journal of Mental Science, 103, 710–738

Budd, K. S., & Greenspan, S. (1984). Mentally retarded mothers. In E. Blechman (Ed.), Behavior modification with women (pp. 477-506). New York: Guilford Press.

Clayton, O., Chester, A., Mildon, R., & Matthews, J. (2008). Practitioners who work with parents with intellectual disability: Stress, coping and training needs. Journal of Applied Research in Intellectual Disabilities, 21(4), 367-376.

Collings, S., & Llewellyn, G (2012). Children of parents with intellectual disability:  Facing poor outcomes or faring okay? Journal of Intellectual & Developmental Disability, 37(1), 65-82.

Dowdney, L., & Skuse, D. (1993). Parenting provided by adults with mental retardation. Journal of Child Psychology and Psychiatry, 34(1), 25-47.

Emerson, E., & Brigham, P. (2013). The health of parents with intellectual disabilities. Journal of policy and practice in intellectual disabilities, 10(2), 118-119.

Emerson, E., & Brigham, P. (2014). The developmental health of children of parents with intellectual disabilities : Cross sectional study. Research in Developmental Disabilities, 35(4), 917-921.

Feldman, M.A., McConnell, D., & Aunos, M. (2012). Parental cognitive impairment, mental health and child outcomes in a child protection population. Journal of Mental Health Research in Intellectual Disabilities, 5(1), 66-90.

Feldman, M. A., Sparks, B., & Case, L. (1993). Effectiveness of home-based early intervention on the language development of children of mothers with mental retardation. Research in Developmental Disabilities, 14(5), 387-408.

Feldman, M. A. (1986). Research on parenting by mentally retarded persons. Psychiatric Clinics of North America, 9(4), 777-796.

Feldman, M.A. (1994). Parenting education for parents with intellectual disability: A Review of Outcome Studies. Research in Developmental Disabilities, 15, 299-332.

Feldman, M.A. (2010). Parenting education programmes. In G. Llewellyn, R. Traustadottir, D. McConnell, & H. B. Sigurjonsdottir (Eds.), Parents with intellectual disabilities: Past, present and futures, (pp. 107-136). Chichester, UK : John Wiley & Sons.

Feldman, M.A., & Aunos, M. (2010). Comprehensive, competence-based parenting assessments for parents with learning difficulties and their children. Kingston, NY: NADD Press.

Goodinge, S. (2000). A jigsaw of services: Inspection of services to support disabled adults in their parenting role. London: Department of Health.

Hodes,M., Meppelder, M., Moor, M., Kef, S., & Schuengel, C.  (in press). Using video-feedback intervention for positive parenting to diminish parenting stress among parents with intellectual disabilities: A randomized controlled trial. Journal of Applied Research in Intellectual Disabilities.

Höglund, B., Lindgren, P., & Larsson, M. (2012). Pregnancy and birth outcomes of women with intellectual disability in Sweden: a national register study. Acta obstetricia et gynecologica Scandinavica, 91(12), 1381-1387.

IASSID Special Interest Research Group on Parents and Parenting with Intellectual disability. (2008). Parents labelled with Intellectual Disability: Position of the IASSID SIRG on Parents and Parenting with Intellectual disability. Journal of Applied Research in Intellectual disability, 21, 296-307.

Keltner, B. R. (1992). Caregiving by mothers with mental retardation. Family & Community Health, 15(2), 10-18.

Keltner, B. R., Wise, L. A., & Taylor, G. (1999). Mothers with intellectual limitations and their 2-year-old children’s developmental outcomes. Journal of Intellectual and Developmental Disability, 24(1), 45-57.

LaLiberte, T. L. (2013). Are We Prepared? Child Welfare Work with Parents with Intellectual and/or Developmental Disabilities. Journal of Public Child Welfare, 7(5), 633-657.

Llewellyn, G. (1990). People with intellectual disability as parents: Perspectives from the professional literature. Australia and New Zealand Journal of Developmental Disabilities, 16, 369-380.

Llewellyn, G., Hindmarsh, G. (2015). Parents with intellectual disability in a

population context. Current Developmental Disorders Reports, 2(2), 119-126.

Llewellyn, G., & McConnell, D. (2002). Mothers with learning difficulties and their support networks. Journal of Intellectual Disability Research, 46(1), 17-34.

Llewellyn, G., McConnell, D., & Mayes, R. (2003). Health of mothers with intellectual limitations. Australian and New Zealand Journal of Public Health, 27(1), 17-19.

Llewellyn, G., Traustadottir, R., McConnell, D. &. Sigurjonsdott, H. B (Eds.). (2010). Parents with intellectual disabilities: Past, present and futures. UK: Wiley-Blackwell.

McConnell, D., Feldman, M., Aunos, M., & Prasad, N.G. (2011). Parental cognitive impairment and child maltreatment in Canada. Child Abuse and Neglect, 5, 621-632.

McConnell, D., Feldman, M., Aunos, M. & Prasad, N. (2010). Child maltreatment investigations involving parents with cognitive impairments in Canada. Child Maltreatment, 16(1), 21-32.

McConnell, D., Llewellyn, G., & Bye, R. (1997). Providing services for parents with intellectual disability: Parent needs and service constraints. Journal of Intellectual and Developmental Disability, 22(1), 5-17.

McConnell, D., Llewellyn, G., Mayes, R., Russo., D., & Honey, A. (2003). Developmental profiles of   children born to mothers with intellectual disability. Journal  Intellectual & Developmental Disability, 28(2), 122-134.

McConnell, D., Mayes, R., Llewellyn, G. (2008). Women with intellectual disability at risk of adverse pregnancy and birth outcomes. Journal of Intellectual Disability Research, 52, 529-535.

McGaw, S., Shaw, T., & Beckley, K. (2007). Prevalence of Psychopathology across a service population of parents with intellectual disability and their children. Journal of policy and practice in Intellectual disability, 4(1), 11-22.

McGaw, S., Scully, T., & Pritchard, C. (2010). Predicting the unpredictable? Identifying high-risk versus low-risk parents with intellectual disabilities. Child abuse & neglect, 34(9), 699-710.

Mitra, M., Parish, S. L., Clements, K. M., Cui, X., & Diop, H. (2015). Pregnancy Outcomes Among Women with Intellectual and Developmental Disabilities. American journal of preventive medicine, 48(3), 300-308.

Reed E. W. & Reed S. C., (1965). Mental Retardation: A Family Study. Saunders, Philadelphia.

Tøssebro, J., Midjo, T., Paulsen, P., & Berg, B. (in press). Prevalence, trends and custody among children of parents with intellectual disabilities in Norway. Journal of Applied Research in Intellectual Disabilities.

Tucker, M.B., & Johnson, O. (1989). Competence promoting versus competing inhibiting social support for mentally retarded mothers. Human Organization, 48, 95-107.

Tymchuk, A. J. (1990). Parents with Mental Retardation A National Strategy. Journal of Disability Policy Studies, 1(4), 43-55.

Tymchuk, A. (1992). Predicting adequacy of parenting by people with mental retardation. Child  Abuse and Neglect, 16, 165-178

Wade, C., Llewellyn., G., & Matthews, J. (2008). Review of parenting training interventions for parents with intellectual disability. Journal of Applied Research in Intellectual Disabilities, 21, 351-366.

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[1] The term “learning disabilities” may be more frequently used in the United Kingdom

Author Bio

davidDavid McConnell, PhD, is Professor and Director of the Family and Disability Studies Initiative, Department of Occupational Therapy, Faculty of Rehabilitation Medicine, University of Alberta, Canada.  Professor McConnell is an international leader in the field of parents and parenting with intellectual disability.

 

 

LauraLaura Pacheco, PhD, is a clinical social worker, post-doctoral researcher and coordinator of the parenting service at the CUISSS-ODIM (West Montreal Readaptation Center), Montreal, Canada. Her doctoral research focused on the experiences of mothers with intellectual disabilities from ethno-cultural communities in Canada.

Fran, Molly and Nuala detail a life of struggle, the achievement of home ownership and getting to the stage of independence with the aid of focused services and individualized funding…

Fran and Molly
  • Fran finally owns her own home after many years of effort
  • Fran, her sister Molly and her mum Nuala have worked hard to achieve this
  • Personalised funding has help them to make it happen
  • She now has dedicated support staff, helping her to decide how she wants to live

My Journey to-date

“While my disability is part of me and means that I require lots of supports to live my life, it is not all of me and should never define who I am and what I can become. I am so much more than my disability and working in partnership PP has enabled me to grow as human being in ways I never imagined.”

As a thirty-five-year-old woman I’m about to celebrate my first year as a home owner. I now have a front door and a place that reflects who I am. A place I call my own. Most importantly I have a home that allows me to feel safe and to grow as a person. A place to build my future from. While becoming a home owner may not be surprising to many of my non-disabled peer group, for a person with the label of being intellectually disabled it has been a long and at times almost impossible journey.

Once you receive the label of being disabled, you begin to lose the right and opportunity to become what others take for granted – a valued member of your community. Instead you live a life removed from society, a special world. A world where you are forced to live with other people like you, surrounded by paid staff to manage and control you. Your family, those you love and know you best, continue to receive negative devastating messages of what you can’t and never will be able to do or achieve. How as their child you lack the skills to enable you to remain with your family, and therefore in the best interest of everyone you need to be removed and separated from them and your community.

fran-in-her-sitting-roomYet on 15th of May 2015, I took my steps away from my labels of being profoundly disabled, non-verbal with serious medical conditions as I became a home owner, a car owner and an employer. With each step I took away from these labels I moved closer to my family, my community and developing meaningful roles for an ordinary life.

The journey was at times challenging and tested us as a family. It has taken time and continuous effort to keep strong and not give up or lose our vision. To achieve my vision, my family spent lots of time thinking about me, my strengths and vulnerabilities. It has taken lots and lots of intentionally planning, around how we have and continue to create and develop a vision for my future, in the way that best meets my needs and dreams.

I am happy, surrounded by those who love me and know me the best. I have a future, which I can control. The possibilities are endless and with each day I am growing and finding new ways to let my voice be heard.

The path to a home of my own

I am a thirty-five year woman who lives in my own 2 bedroom home in Co. Waterford. The Annex is on the same property as my parents’ home and farm. I rent the property from them under an inclusive tenancy arrangement for a minimum yearly cost. Both my siblings live close to me and the family home, my brother also lives on the farm property also. I am extremely close to her family, I have many loving and important roles within my family structure.

I have the label of being intellectual disabled which has been diagnosed as profound to severe. I have a serious medical condition which can be life threatening if not managed correctly and can cause me great pain and discomfort on a daily basis. I do not use verbal communication however I have developed my own communication system and actively support all those around me to understand my needs and wishes.

I was part of a full time residential placement within a service provider for many years since I reached 18. Unfortunately, this setting continued to cause a detrimental impact on my health and wellbeing as it failed to meet my needs. From 2004 to 2013, due to ill-health I continued to return home from my residential setting for periods of time up to 8-9 months of each year, to be supported by my parents in the family home. However, since my move into my own home 2015 it has been also noted that my health has improved greatly and I’m able to enjoy a much higher quality of life.

My journey towards an individualised living arrangement began in 2006, when together with my family I undertook a PATH. A clear vision and set of goals emerged from this process, including the belief that I needed to live in my own home close to my family and community. From 2006 until September 2014, through the support of my family I explored every avenue possible to enable my funding to be released from the service provider into an individualised budget. This remained unsuccessful until I and my family began to work in partnership with Possibilities Plus (PP). Possibilities Plus is a support brokerage agency, which provides support to an individual and their family to discuss, plan and establish an individualised living arrangement. PP supports all aspects of the process from discovery work, staff recruitment, review, HR management and governance, and financial accountability.

Fran and Molly3Finally, in 2014 the HSE finally agreed to fund me in my own home. My home was established by securing funds through a Waterford County Council grant and developing an inclusive tenancy agreement. Both of these were achieved by my family during 2014/15, while negotiations with the HSE were on-going.

I moved into my own place in May 2015, after the recruitment of my own staff to support me to begin living a self-directed life. This recruitment involved a three-stage process. Candidates were invited to apply for the role of a direct support worker through the completion of an application form submitted to PP with their current C.V. Then candidates were shortlisted to a first interview which was again refined to select candidates for a second interview. This second interview took place in my home and each candidate got to spend time with me and my mother. Six individuals were successful and were offered part-time positons supporting me to live in my own home.

My family worked very closely with the staff in a shadowing capacity as part of the staff’s induction and training. Slowly over the past 12 months as my confidence and trust in each staff member has grown the family have pulled back from the shadowing role.

Over the past year I have continued to attend a day service. This decision was reached for a number of reasons. Over the past 3 months I have indicated that I want to explore other opportunities and avenues that have opened up to me since my move. I, my family and staff, through the support of PP are now in the process of exploring and developing more opportunities for me to forge more natural links and relationships in my own community. My sister and I are looking at potential areas in which I may develop my own micro-business. This work is ongoing.

Fran and Molly4Reflections from the past year.

To help and support me to plan and reflect on the past year together with my family and staff Possibilities Plus used an Individual Supported Living Manual (ISL) to review my individualised living arrangement. The tool has been developed in Australia and is currently being used to review 150 arrangements over there. As a family, we wanted to use something that had been developed in an inclusive way, which included the input of other individuals with the label of being disabled, their families and support network. We wanted something that had been reviewed by leading academics in this area and that had a track record of being beneficial in supporting individualised living arrangements

As a family, we found the tool very easy to use and inclusive. It enabled us to discuss and reflect on the past year in a focused and meaningful way. It allowed us to see what was working really well and all the achievements that had been reached along the way. It also enabled us to see things that are challenging to us and how to improve and solve these challenges. It gave us clear feedback on what we also need to focus on going forward and helped us establish my goals for the coming year.

What is great is that it is a live process which will enable us to plan in a creative and engaging way. It has enabled us to see all the positives and achievements from the past year, which affirms the work to-date and supports us to remain strong and focused on what needs to be achieved going forward.

Fran’s journey (captured by her big sister Molly) June 2016

Reflections from my family –  our journey so far!

“Often in time of illness or challenge, I would look at my daughter and only see my vulnerable young child, however since Fran has moved into her own home I can only see my adult daughter, even in times of great illness, (such as time spent in with Fran in AE recently)”.

Even though my daughter’s intellectual disability was cause by brain damage at birth, we have seen her intelligence grow substantially over the past 12 months. In securing a home of her own Fran has achieved a sense of security and well-being, which I believe has enabled this growth. While there are many areas of her life that we have seen the positive impact of her move into her own home, here is one example:

“Due to a complication with a medical procedure, Fran was required to go to A&E in hospital after a consultant at South Doc late on a Saturday evening in May 2016. The journey began at 9pm when Fran departed from her home and the group did not return home till the following morning at 7am. The night involved extensive waiting periods of time while she remained in great pain and discomfort. She had to deal with large groups of strangers and a range of doctors. Her space was repeatedly invaded to enable her to be examined. Throughout the whole event, Fran remained calm and understood every request that was made of her, her engagement with her surroundings and the people who dealt with her was far beyond what any assessment of her abilities ever stated she was capable of. When the doctors were required to insert a line in her hand, her sister simply explained what needed to happen and Fran gave her hand to the doctor. Fran remained on a trolley for hours, never attempting to get off or trying to leave. With the right communication and support Fran understood and showcased her ability to deal with the situation.”

This reinforced for us, Fran’s family, the benefits for Fran of living in a home of her own, and a life of self-direction which has enabled her to grow as a person to new levels which were scarcely imaged even by those she loves and know her best. The possibilities are endless.

Working in partnership with Possibilities Plus

Working in partnership with Possibilities Plus has offered Fran and us her family hope, support and guidance. Working together has made it possible for her to live independently and for us as a family to look forward and plan for her future in a positive way.

As a family we spent years trying to release Fran’s HSE funding allocation from her service provider. It proved the biggest block in preventing Fran from living in a home of her own close to her family and her community. PP supported Fran and us in every step of this process from engaging with the HSE, developing and costing her budget and support in setting up the systems required to facilitate it.

With regard to staff recruitment, PP ensured that we were central to the process of matching staff with Fran. They managed all the paper-work, interviews and HR associated with this process while acknowledging our input in a respectful way. PP offered great relevant training to new staff while supporting me to have confidence to teach the staff about Fran, who she is, her unique way of communication and her needs.

While we questioned whether or not living in a small community in rural Ireland would impact on our ability to recruit staff who would be even interested in supporting Fran, a year into it I am delighted to say that we have a wonderful group of staff, who are committed in their work to support Fran to live the best life she can.

Our Support Broker is just fantastic, she has become part of our family. Her skills, expertise and professionalism ensures the quality and sustainability of Fran’s arrangement. She is a constant source of guidance and it is a true and respectful working partnership.

It is not without its challenges; it takes a lot of work and commitment to set up and sustain the arrangement. It is not suited to every family, as the input required from families is high. There are often daily challenges and at times we questioned whether it would work for Fran and us. However, as I have watched Fran develop and grow over the past 12 months, she has assured us that she is facing and solving these challenges in her own way. She has found her voice and every day it grows.

For us as a family, we now understand that securing the physical space and the support staff is only the first step of the journey – the real work for us has only just begun, and that is to support Fran to live an ordinary live with real meaning.

Fran and Molly5The partnership with Possibilities Plus works for Fran and us as a family – however that does not mean it will work for every family, which is OK. Each person and their family should have choice, and a range of options, so that they can choose what will work best for them. Families and their loved ones need information, open communication and dialogue from the HSE; they need support to develop their understanding of the different types of services that are available, and which one may be a good option for them. It’s about choice and equality, choice around the person’s future and equality in how they are treated and supported by the system.

  • Fran’s mother Nuala – June 2016

Author’s Note

In writing this piece, as Fran’s big sister I deliberately wrote it in the first person. Having spent a lifetime immersed in this area, I have often witnessed that when a person receives the label of being intellectually disabled, they can become less human in the eyes of others. The individual is no longer seen as a person, but only the sum of their negative label. My sister is one of the strongest human beings I have ever met, she has shown such resilience and bravery in the face of challenges and struggles many others would not survive. Through everything, she retained her ability to love, to trust and a fantastic sense of humour with the heartiest laugh you will ever hear. Being her sister has taught me so much. While it has brought many challenges and testing times to us as a family, Fran continues to show me what it means to have a relationship with someone who wants nothing from you but to offer you love and respect.

While others may question my rationale for writing the piece in the first person, I did it simply as I wanted the reader to hear Fran’s journey and story through her voice (as best as I can capture it), I wanted the person reading this to see her and not just her label.

Author Bio

Molly O’Keeffe was based at the former National Institute for Intellectual Disability as course

co-ordinator of the Certificate in Contemporary living (CCL) within Trinity College for ten years before taking un-paid leave to support her sisters transition into a home of her own. During her time at Trinity, Molly was involved in a range of inclusive research projects, advocacy initiatives and worked in partnership with the students and their families through their journey as a student, employment, transition and life after college. She supported students and their families to share their stories both nationally and internationally.  Molly worked closely with philanthropic organisations and was a key figure in the development of a range of expressive arts projects. Moll resigned from her post in Trinity last September and is currently supporting other individuals and their families to achieve an independent self-directed live, she works as a staff member with Possibilities Plus while also working with other organisations and groups interested in exploring and developing this area within Ireland.  

Molly and Fran continue to share their lives as sisters, doing and sharing their time as sisters do together.

Sarah Lennon takes a close look at what the new legislation really means in practical terms for people with an intellectual disability, helping them to determine their own lives and activities...

  • The Assisted-Decision Making Act is now the law and will come into effect later in 2016
  • This will change the way services have to do things
  • Up until now, a service-user might go to a doctor or the chemist with different staff member. Also, there may have been blocks to them signing leases or having their own bank accounts etc
  • With this law, service-users can name who they want to support them in areas of their life
  • It is a law that tries to help the service-users own preference and will be the guide to decisions in their lives

The Assisted-Decision Making Act is now the law of the land, so we have a bit of a wait until the law comes into force later this year – enabling us all some time to get our heads around the implications of the new law and how it will practically change all of our lives.

What is clear, is that it is going to mean huge legal, cultural and attitudinal changes for us all. There will be some help along the way, the new Decision Support Service will issue codes of practice once it has been established – handy guides along the way. In the meantime, we all need to familiarise ourselves with how the law could change how we need to do things from now on.

To  illustrate this, let’s consider ‘Sarah’. Sarah is an imaginary woman, with an intellectual disability, living in an imaginary residential facility but facing many of the real decisions and experiencing the real types of roadblocks that individuals experience daily.

Sarah has a chest infection and needs to attend the GP. The staff roster will often dictate who goes with Sarah to the doctor and who takes her prescription to have it filled. Sarah feels that the doctor spoke to the support staff and not to her and was not asked for her opinion or consent during the process. Sarah will be given her new medication at the designated time. Sarah is also unhappy that a different staff member goes with her to the doctor each time and would like some consistency in her support.

Sarah receives a weekly disability allowance, and the Department recently switched the payment from post office to bank account. The bank that Sarah uses insisted on her opening a joint-account with her mother as they did not believe that she had capacity to manage the account on her own. Sarah’s mother was reluctant to do this but the bank insisted. Sarah’s mother is worried that Sarah could become a Ward of Court if anything happened to her or the account would be frozen. Sarah manages her day-to-day finances but doesn’t have experience using the ATM.

Sarah is also in the process of moving to the community from the residential facility. She is looking for a new home in the community but nobody seems to be clear about who can sign the lease. Sarah also needs to get gas, electricity, phone, waste disposal and other services that require a contract. Sarah’s sister has volunteered to co-sign the lease but the landlord isn’t too keen on that process.

What we can see is that a series of blockages have cropped up, and in the absence of a clear legal framework a series of informal processes have evolved. In making our new system work, these informal processes will need to be unbundled and a new way found, of looking at decision-making using the Assisted Decision-Making, Co-Decision-Making and Decision-Making Representation structures. Although we cannot ascribe each system a category of decision-making or say which system best suits someone with a mild intellectual disability or a moderate intellectual disability etc., we can start to look at how things may be done differently for these everyday situations.

If we take Sarah and look at the effect of the new law over her life, there are many different options available to her. First of all, Sarah must be presumed capable of making all her own decisions herself, and if she wants support it must be a person of her choosing.

Sarah may wish to choose an Assistant to support her around going to the doctor. This person must be someone she trusts and with whom she has a personal relationship. The person should also be available and willing to support Sarah. Sarah would choose her cousin Annie, as she lives nearby, and is of a similar age. They also get along well and share trust. Annie could attend the doctor with Sarah, help her to understand the things the doctor says and help her to communicate a decision.

Annie does not make the decision for Sarah. The relationship is registered with the Decision Support Service, as evidence that Annie is Sarah’s Assistant for medical decisions so the GP cannot refuse Annie entrance and nobody else can take Annie’s place unless Sarah chooses another Assistant. Although staff in the service have taken care of these decisions for Sarah up to now, they cannot do that anymore as even if she wants her Assistant to be a staff member, the law doesn’t allow owners, managers or staff from residential units to carry out this role.

Although Sarah has a joint bank account with her mother, it is only Sarah’s Disability Allowance that goes in.  Under the new system, Sarah could choose her mother as a Co-Decision-Maker for her financial decisions instead and register this with the Decision Support Service. This arrangement would involve Sarah and her mother making all decisions together. Sarah’s bank account would only be in Sarah’s name but Sarah and her mother could make decisions together. Were something to happen to Sarah’s mother, and she could no longer support Sarah, she could choose another person to be a Co-Decision-Maker. Like the Assistant, the Co-Decision-Maker must be a person with whom she has a personal relationship. Sarah’s mother can explore using the ATM with Sarah, as one of the guiding principles of the new law is that individuals should be encouraged to improve their decision-making capacity.

Finally, in respect of Sarah moving to the community, she could call on the full gamut of decision-making supports around the process if she wants them. Depending on the complexity of the decision, Sarah may require a different support for each decision. If she enjoys good decision-making capacity around paying bills or grocery shopping then an Assistant or Co-Decision-Maker may suffice. If there were significant concerns around Sarah making serious financial decisions such as entering a tenancy, then an application to become a Decision-Making Representative could be made. This application is made to the Circuit Court and the person bringing it must show that Assisted Decision-Making and Co-Decision-Making are not sufficient or suitable. In Sarah’s situation, her sister Alice could apply to the Court – in practical terms this means  that Alice would sign the lease on behalf of her sister. However, at all times, Alice must observe the will and preference of her sister. Alice, knowing that Sarah loves the cinema and shopping, chooses a property near the town centre, rather than the property closer to the service or the GP, because this is what Sarah would choose for herself.

The examples above are not exhaustive and every individual will need their own specific support. This examination will hopefully go some way towards illustrating in practical ways the manner in which the new law will change the customs and cultures that were created while we waited for the law to change. The new focus is on what support a person needs to make her own decisions, from her own natural support structures and how to express her own will and preferences, sometime through other people who know her well.

Author Bio

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

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

Deirdre Corby introduces HIQA‘s new guide and leaflet, designed to support people who use services in making their own decisions about their lives.

  • HIQA have made a guide to help service-users make their own decisions in life and also the staff that support them
  • It is meant to be an aid to gaining more control over your own life
  • There are real life examples in the guide such as ‘going to a doctor’ etc.
  • It is written in a way that is clear and easy to understand

HIQA have published a new guide called Supporting people’s autonomy: a guidance document, and also a separate explanatory leaflet called My Choices: My Autonomy.

The reason for putting this guide together was to help support people who use services to make their own choices and decisions about their lives. To do this, the people who work in services need guidance and support themselves so they know the best way to help people make the best decisions.

Therefore the guide is about helping staff to support people who use all kinds of health and social care services to make decisions.

Before using this guide, services will have to consider a number of areas. They’ll need to consider the leaders and managers in the organisation, and whether they need training, so they have a good understanding of what supporting autonomy really means. This might result in some policy changes being made, or some changes in the organisation’s overall plans. In general the organisation will need to look at how frontline staff are supporting autonomy.

The quality of services will improve and people’s quality of life will get better when their autonomy is supported.

How the Guide is organised

The guide begins with details about the Health Information and Quality Authority (HIQA) and then some notes about the guide and the terms used.  Section A is an introduction and explains what autonomy is and why it is important, who the guide is for, and why it was developed. Section B explains the guide in detail with the key principles, and provides a framework for service providers. Guidance is given on the subject of respecting the person’s right to autonomy, avoidance of pre-judging, communication, balancing rights, risks and responsibilities, agreeing person-centred supports and how to implement and evaluate supportive actions. Finally in this section, there is important information regarding barriers to autonomy.

Using the Guide

The guide is easy to use as it gives examples to help you understand the practical aspects of supporting autonomy.  There are case studies in areas such as people going to their GP, people who use intellectual disability services or older people with dementia. At the end of the guide there are lots of resources explaining areas such as the law and how it impacts on autonomy. One of the best resources is at the very end, in Appendix 5.  This is a Self-reflection checklist for health and social care providers, so they can check if they are respecting and promoting autonomy.

How to find out more

You can go to the HIQA link below, which will bring you to the page that links to the full guide and the explanatory leaflet.

https://www.hiqa.ie/publications/supporting-people%E2%80%99s-autonomy-guidance-document

Or contact:  Health Information and Quality Authority Dublin Regional Office, George’s Court, George’s Lane, Smithfield, Dublin, D07E98Y.

Phone: +353 (0) 1 814 7400

Web: www.hiqa.ie

Author Bio

03 - Deirdre CorbyDeirdre Corby PhD. is a Lecturer in the School of Nursing and Human Sciences at Dublin City University, with a particular interest in service user involvement and in education at post-secondary and higher education for people with intellectual disability.

Kevin Murphy illustrates how he managed to broaden his horizons, meet new people and travel – and all for his love of West Ham Football Club.

  • Kevin has been a West Ham supporter since 1974
  • He has found a supporters club that have accepted him as a member
  • He has travelled many times with them to Upton Park to watch his favourite team
  • He has gained massive independence and confidence and joy from this group he is a part of and made to feel welcome
  • He looks forward to West Ham’s move to their new stadium in 2016

I have been a part of WALK since 2002. Sport is a huge part of my life, particularly football. I enjoy watching football – both through going to games or watching on TV- and talking about the highs and lows the next morning with friends in work. I live in Inchicore in Dublin and regularly take trips on the LUAS to Tallaght to watch Shamrock Rovers, but my club is West Ham United.

I’ve been supporting West Ham since 1974. I’ve been asked ‘’Why West Ham!?’’, but I always enjoyed the style of football they played, particularly under the manager John Lyall. West Ham were relatively successful at the time. They won the FA Cup in 1975 and the following year they got to the European Cup Winner’s Cup Final, although we were beaten by Anderlecht. My father followed Aston Villa, so it was a claret & blue house!

Although I’d been following West Ham for a long time, I never really met other West Ham fans in Dublin. I discussed this with my keyworker at one of my planning meetings in the Summer of 2012.  I thought it would be great to find like-minded fans to meet up and watch West Ham games. A quick Google search later, and The Dublin Hammers turned up!

The Dublin Hammers are a West Ham Supporters Club based in Dublin. They meet up regularly in Branningan’s Bar on Cathedral Street in Dublin City Centre to watch West Ham games. This sounded perfect.

Jimmy Conway was the contact in the club. We contacted Jimmy to get more information about the Supporter’s Club and to express an interest in becoming a member. Jimmy was extremely helpful and said I would be more than welcome to join the Supporters Club.

As the season in England was coming to an end, and wasn’t due to start again until the end of August, I had a bit of time to work on becoming familiar with Brannigan’s Bar and importantly, how to travel there from my house. Over the next couple of months, I worked on figuring out the route and becoming comfortable with travelling it.  This involved getting the Luas from BlackHorse to Abbey Street and identifying landmarks, which would help me find Brannigan’s Bar. I also took the time to get comfortable using my mobile phone in case I needed it.

On 23rd August 2012 – two days before the first meeting of the Supporters Club in Brannigan’s Bar, I travelled independently from Inchicore to Brannigan’s Bar.  I agreed that a staff member would also do the journey, but they would do it a half an hour after I left.  I got the Luas from Blackhorse. I got off at Abbey Street and began looking for the landmarks. The Spire. Check. Burger King. Check. Spar. Check. And there was Brannigan’s. The staff member arrived shortly after. I told them how comfortable I was doing the journey independently, and was looking forward to travelling independently on Saturday and meeting Jimmy and the other Supporter’s Club members.

A couple of months passed and I was regularly travelling into Dublin City Centre to meet up with the Club. I looked forward to the meetings. It was a great atmosphere in the Bar. Cheering every Hammers’ goal and bemoaning every goal against. It was great experiencing these moments with my fellow supporters.

I was turning 60 in May 2013, and I was planning on having a party in the Red Cow. I had invited Jimmy from the Supporter’s Club and I was delighted he was able to make it. It was a fantastic night spent with many of my friends, with the occasional glass of red wine and Neil Diamond sing-along!

That night, Jimmy had mentioned that the Supporter’s Club were running an overnight trip to Cork in July to see West Ham play a pre-season game v Cork City, and asked would I be interested in going. It’s not everyday West Ham come to Ireland, so I was excited about this opportunity and expressed my interest in going on the trip. Jimmy passed on the details and over the next couple of weeks I worked on making the relevant bookings (train tickets, match ticket and a room in The Metropole Hotel in Cork – a beautiful hotel). I intended to travel independently to Cork with the Supporter’s Club.

Jimmy met with a member of staff in WALK to discuss the trip in detail. Jimmy said the other lads in the Club were always very positive about my involvement with the Club and that we were all there for the same reason – to support our team!  Jimmy felt this trip was something I could do without staff support. Jimmy felt that I had settled into the Club well and I was completely comfortable with everyone in the Club too. Jimmy and the staff member exchanged the relevant contact numbers and it was all systems go.

Now, I needed to spend time to figure out how to travel from Blackhorse Luas Stop to Heuston Station because this is where I would be meeting the lads from the Supporter’s Club to catch the train to Cork. I did several trial runs – both with and without staff supporting me.  I was comfortable travelling independently on this route ahead of the match date.

Another thing I worked on was identifying and becoming familiar with things in Heuston Station such as the location of ticket kiosks, platforms and toilets to avoid confusion on the morning of the trip. Jimmy agreed to meet me at the Heuston Luas stop on the morning of the trip, where we would both go and collect our train tickets together. We were able to book our seat together on the train – which was great – as we were able to keep each other company and discuss the game that evening – we were both really looking forward to it!

The trip went well. West Ham won 6-2, so I got to see plenty of goals and a couple of first-team stars were on show, which I wasn’t expecting, and was a bonus! It was great to bond with the lads in the Supporter’s Club too and we still share stories from the trip to this day (What happens on tour though, stays on tour!!!)

Having seen West Ham come to me, it was now my turn to go and see West Ham in London.

I didn’t have long to wait. The Supporter’s Club were running a trip to see West Ham v Aston Villa on at the start of November. The group intended to stay overnight, however I preferred to do a day trip. A staff member from WALK would travel to London on the flight with the Supporter’s Club, and after the game I would arrange to meet the staff member and travel back to the airport to head home.

My deposit for the trip was paid, my seat on the Supporter’s Club bus was booked, my flights were booked, my match ticket was booked and I was all set to go.

On the morning of 2nd November 2013 – a staff member and I travelled to the airport to meet the lads in the Supporter’s Club. We were all booked on the same flight, which was great. Upon touching down in London Stansted, the staff member exchanged numbers with the one of the guys in the Supporter’s Club and we arranged a meeting point after the game.

Unfortunately the game ended 0-0 – there is nothing worse than going to a football game that ends 0-0! The consensus amongst the Group was that it was two points dropped, but I had enjoyed the day and my first experience travelling to London with the Supporter’s Club. I promised myself it wouldn’t be the last.

Over the next couple of months, I continued to travel regularly into Brannigan’s Bar in Dublin City Centre to meet up with the Club and watch games on TV. The Club then announced plans to travel to London in May 2014 to see the game v Tottenham Hotspur – the derby! What a game that promised to be – I knew I just had to be there.

It was very similar to the last trip the Club ran in November 2013. The Club planned on staying overnight, but I preferred to do a day trip. I agreed a staff member would travel with me again to London, that I would head off with the Club for the match and afterwards I would meet up with the staff member to travel home. I paid the deposit and made the relevant bookings. It was just a waiting game now.

The morning of May 3rd arrived and the staff and I travelled to meet the Club – bright eyed and bushy tailed, in Dublin Airport. Again, we were on the same flight and we were all in jovial mood. West Ham v Tottenham is one of the biggest games of the season if you’re a West Ham fan, and I felt really fortunate and excited to be going to see this game. Going into the game, West Ham weren’t playing particularly well of late and Tottenham were in a good run of form, but ever the optimist, I was hopeful of a West Ham win!

On a beautiful summer’s day in East London, West Ham put in a great performance to win the game 2-0. I thoroughly enjoyed the game and it made the journey home a happy one.

I’ve been on three more trips to London with the Supporter’s Club – in November 2014, May 2015 and October 2015. In November 2014, we drew 0-0 with Aston Villa – again! – Which was like déjà vu from my first trip in November the previous year! In May 2015, we were beaten 2-1 by Everton – where I saw my record of West Ham never being defeated disappear! And my most recent – and arguably my most enjoyable – trip was in October 2015, where we beat Chelsea 2-1 in another derby game.

I particularly enjoyed that Chelsea game as the 2015-2016 Season represented the last season of West Ham playing in Upton Park before they moved to the Olympic Stadium in the summer of 2016. That famous old ground has been home to West Ham since 1904. When I went to visit family in London in 1974 – as a student at the time, I went to Upton Park to watch West Ham. 41 years later, I was possibly watching them play in that same old ground for the last time. It was great to win the game on the day to ensure my last memory of Upton Park was a happy one!

When West Ham move to the Olympic Stadium in the summer of 2016, it will open a new chapter in the club’s history and a new opportunity for myself too. I watched the London Olympics on TV in 2012 and was impressed by the stadium. It looked fantastic.

I look forward to my first and many more trips to the Olympic Stadium with the Supporter’s Club to seeing West Ham play.

Author Bio

Hi, I’m Kevin, I live in Inchicore. I’ve got lots of interests: dancing classes, choir, guitar lessons, going out to gigs – anything to do with the music side of things. One of my biggest loves is my work. I work part time in 2 cafes and a bar. I enjoy learning new skills and working as part of a team. I enjoy meeting the customers and looking after their needs. I enjoy the banter with the other staff and the customers. I am also a serious sports fan – soccer, rugby and gaelic. Developing this passion and meeting new people through it is what this article is about.