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In May, Mary de Paor attended the seminar on Personal Budgets and individualized funding held in Dublin. Here she reviews the various contributions by a number of experts from Ireland and the United Kingdom...

Inclusion Ireland and Down Syndrome Ireland hosted a seminar on ‘Personal Budgets’ at the Gibson Hotel in Dublin, on the morning of 30 May 2016. The conference room was bulging with people with disabilities and family members who were anxious to hear about new/better ways to access the supports they need and want in order to achieve greater choice and independence.

Speakers included NUI Maynooth researcher Padraic Fleming, LEAP Ireland  founder Rachel Cassen, parents Rita Walsh and Avril Webster, ÁT Network representative Martin Naughton (with Dr Sinéad Keogh), Julie Stansfield of In Control (UK) and Dr Simon Duffy, Director of the Centre for Welfare Reform at the University of Birmingham (see Simon’s article on the subject elsewhere in this issue). Finian McGrath, TD, newly appointed Minister with Responsibility for Disability Issues, was also in attendance. His department is to establish a Task Force on Individualised funding, moving away from the dependency and deficit models of the past.

Ireland lags behind several other countries in providing for individualised funding for people with disabilities. Padraig Fleming reported on an evaluation of four Irish pilot projects, with Genio funding. He said that personal budgets are ‘doable’ but ‘challenging,’ and that there is as yet no system for accessing  such supports.

Rachel Cassen called for community funding and supports to be developed to replace older institutional care systems. The aim should not be focused only on value for money, but, more importantly, on greater community integration. Families require training to develop collaborative skills in negotiation and succession planning. Supports offered must be expanded, so that those with individual funds need not simply ‘buy back’ existing offerings .

Rita Walsh described how she had fought a ‘grinding struggle’ to secure personal funding for her daughter Helena. They engaged brokerage services from Possibilities Plus in Co. Kildare, and Helena now enjoys a wider variety of activities, far greater community involvement, and has a circle of support.

Avril Webster described the complex needs, and the abilities, of her school-leaving son Stephen, and their continuing search for a better route for his future. She said the question is not really about funding, but about choice in how funding is used (see Avril’s article on the subject elsewhere in this issue). She accepted that change is hard for all the stakeholders in disability supports, but that young people with disabilities deserve the same opportunities to find their way into adulthood, given the right supports, and with the possibility of making mistakes and changing choices along their way.

Martin Naughton described how the ÁT Network  was established in 2011 as a three-year HSE ‘demonstration project’. It operates as a small ‘mothership charity’, assisting people to access and administer self-directed payments. Although individuals were required to take more responsibility over their own life, Martin and Sinéad Keogh stated that the people involved in the programme had all experienced a much higher degree of empowerment, flexibility and self-confidence.

Julie Stansfield reported on the UK Department of Health and Mencap’s ‘In Control’, which was founded in 2013. People there have a legal entitlement to have a personal budget, which is intended to enable individuals to do realistic life planning. Some UK local authorities have developed the schemes very successfully, and others are still locked into a dependency culture, acting more as a ‘corporate parent’ in deciding what supports are made available. Further collaboration is needed between people and communities, with a further shift in the balance of power, with greater information and knowledge, and using money more efficiently and effectively.

Simon Duffy, formerly involved with ‘In Control’ and now at the University of Birmingham, cited some examples of international best practice in individualised funding. California began developing the independent living movement for people with physical disabilities fifty years ago. Canada’s development began with families in intellectual disability. And Australia has well organised advocacy services to assert funding provisions. He said that governments and societies had spent too long investing in ‘the wrong stuff’, and that they need instead to invest far more in families and communities. ‘Pro-action needs to move upstream’—a strategy to give power and resources to people (citizens) who can do good things with them.  He cautioned that rather than seeking new money, ‘old money’ should be moved into the community for individuals and families. Flexibility is essential or money will be wasted—and it takes time.

Minister McGrath said that he was spending his first six weeks in office undertaking a tour of listening to people around the country. He said that the ‘Transforming Lives Programme’ task force would soon be established, seeking to prioritise citizens’ rights and choices for people with disabilities.

There was a good deal of information to be gained from all the speakers at the morning seminar. Encouragement and difficult realities were expressed in equal measure. However, this author heard nothing from the silent elephant in the room! How are existing service providers to be reconfigured in the future, when ‘shoppers’ may or may not choose what they  offer, when their budgets may be snipped again and again, and their staff redeployed, or unemployed? It is a complex drawing board, for sure!

Author Bio

Mary de PaorMary de Paor is a former director of Sunbeam House Services, and was also copy-editor of Frontline Magazine Ireland.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Author Bio

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

Padraic Fleming looks at the area of Individualised funding for people with disabilities in Ireland and uncovers positive efforts to effect better support for people with disabilities including intellectual disability.

  • Money for people with disabilities has normally been managed by services. Individualised funding means that a person with a disability is in charge of their own money.
  • There are different types of individualised funding. Sometimes a person can get help with their money and how to spend it.
  • Individualised funding is not a new idea. We can learn from other countries.
  • A team in Maynooth University has been doing some research in this area. They found that people felt better about their lives.

Traditionally, public funds allocated for people with a disability have been distributed among service providers to deliver a suite of services to meet all personal, health and social care needs. However, recent years have seen a greater emphasis on, and attendant policy shift toward, what has been called individualised funding. Individualised funding is an umbrella term for various funding mechanisms that aim to provide personalised and individualised support services for people with a disability. It aims to give people with a disability more control over their lives, the things they do and the people with whom they spend their time. It does this mainly by giving the ‘spending power’ to individuals, their families or advocates. Being in control of the money has the potential to open up considerable possibilities. Supports and activities can be purchased from the more traditional centre-based services as well as, or combined with, alternatives that are already available from within the community.

The two most popular forms of individualised funding are ‘Direct Payments’, where the individual or legal guardian receives the funds directly and self-manages the administration and purchases. A second option is where individuals receive the support of an intermediary service. The level of service provided depends on individual needs and ranges from purely administrative support to personal and social care support. In both models, individuals receive high levels of support in the transition from traditional congregated service provision or if applicable during the transition from school into adult day services.

Four initiatives in Ireland have been funded by the Genio Trust to pilot individualised funding. Genio brings funders together to develop better ways to support disadvantaged people to live full lives in their communities (www.genio.ie). A multi-phase evaluation focusing on the implementation of these initiatives is currently being undertaken by staff in the Mental Health and Social Research Unit located in Maynooth University Department of Psychology. Initial findings from this evaluation were presented by the author at a recent international conference hosted by The Centre for Inclusion and Citizenship in the University of British Columbia, Vancouver, in a presentation called ‘Claiming Full Citizenship – Self Determination – Personalization – Individualized funding’ (Fleming, McGilloway, & Barry, 2015).

In Ireland, there is currently no standardised ‘Resource Allocation System’ in place for assessing how much money an individual needs to meet their personal, health and social care needs. Since 2010, the National Disability Authority has conducted extensive research on possible systems and undertaken a two-phase feasibility study to pilot four resource allocation systems in order to determine which is the most suitable within the Irish context (National Disability Authority, 2015). The lack of such systems and the associated difficulties in accessing funds tied up in the current funding system, has been seen as one of the most significant challenges for organisations implementing individualised funding in Ireland.

“The biggest single problem, and the biggest single delay has been trying to get the funding, and that comes in under a couple of headings.  One is decoupling funding from a block grant…” (Staff member interviewed as part of evaluative research (Fleming et al., 2015)

“If they didn’t make it such a monumental struggle to get (the funding). Like that would break the heart of anybody” (Parent during participatory workshop  as part of evaluative research (Fleming et al., 2015)

While additional challenges were encountered during the implementation of the pilot projects, many of these can be, and have been, managed internally. These challenges often relate to the transition from the traditional mode of service delivery and the consequent need to equip individuals with the life skills, decision-making skills and the natural support network required for these projects to be successful. Changes to organisational structures or equipping staff, individuals or advocates with hands-on experience of the individualised funding process have led to the natural emergence of individually tailored solutions. Furthermore, by looking outside of Ireland and learning from the experiences of other countries and their journey over the past two decades, practitioners and participants can strengthen the efforts in Ireland, accelerate the learning and avoid potential pitfalls into the future.

Individualised funding has been used with varying degrees of success since the 1970s, and up until recently, in countries as diverse as Canada, the US, the UK, Australia and New Zealand. Each jurisdiction obviously has its own structures and systems, benefits and challenges. There were two striking messages from the Vancouver-based international conference in October, for those in Ireland who are striving to build upon the policy commitments to provide personalised supports through individualised funding (Department of Health, 2012). Firstly, the challenges being experienced in Ireland have been experienced elsewhere and continue to be experienced, even with strong systems and processes in place. Secondly, while resource allocation systems are fundamental for individualised funding to operate in these countries, an over-emphasis on building strong systems can lead to a loss of the values associated with individualised funding.

Unexpectedly, the uptake of individualised funding has been relatively low in Canada. A recent study indicated a number of potential reasons for this, including how information was delivered; peer influences; lack of promotion; lack of understanding about the new system; lack of staff training and associated trickle-down effect of information; fear of isolation; frustration over amount of paperwork involved; families’ risk-aversion and long term fears; fear of losing security associated with traditional services; and the sense that the wider community is unwelcoming (Bahadshah et al., 2015).  All of these elements are also reflected, to some degree, in the Irish research being conducted by Fleming et al (2015). In Ireland however, we have the advantage of learning from these experiences before individualised funding is widely adopted, thereby ensuring that the necessary resources are in place to alleviate a lack of training, information and stakeholder fears and concerns.

In New Zealand, where there was a marked increase in those using individualised funding during 2009-2014, research has indicated that individualised funding can lead to cost reductions in the delivery of disability services (Field, 2015). Furthermore, the use of story-telling and, in particular, the use of online videos (see http://tinyurl.com/stories-building-capacity) was advocated by an organisation called Manawanui as a means to address the challenge of informing families, to illustrate the impact of individualised funding on individuals’ lives and to increase the effectiveness of professionals working with families (Janson, 2015).  Organisations within Ireland have also harnessed online media to tell similar positive stories; for example, PossibilitiesPlus commissioned a short video whereby individuals availing of individualised funding spoke about their experiences. This video was produced by Fionnathan Productions  – a video-making business set up by a recipient of individualised funding through the ÁT network in Ireland (PossibilitiesPlus, 2014). Genio has also produced a series of videos depicting personal stories from within the many disability and mental health projects that they have previously funded, including individualised funding through the ÁT network (Genio, 2011).

These videos bring to life many of the positive themes which emerged from the evaluative research in Ireland. For example, Fleming et al (2015) found that the successes of individualised funding generally outweighed the challenges. For individuals with a disability, the positive elements included improved self-image with people describing more self-confidence, skills, a sense of leadership and success; the development of independent life skills; new experiences including the opportunity to travel independently (having received the relevant mentorship), and the possibility to purchase items to assist individuals to function independently. There were also health improvements reported by some individuals, and a greater sense of control and life purpose, all of which were facilitated by increased social support from family, friends and the wider community.

The benefits of the individualised model also extended to natural supports (such as family and friends) and organisational staff, processes and systems. For example, those providing informal support grew in confidence, whilst their fears about their friend or family member leaving the perceived security of traditional settings were alleviated; at the same time, their perceptions around the abilities of their family member with a disability were enhanced, as were their perceptions of their wider network of friends, colleagues and the general community. In terms of process, tools were developed to support individuals in identifying and organising activities within the community, the role of the intermediary support person was developed and a circle of support established in a participatory way with individuals, families, friends and other advocates.

Advances were made in de-bundling money from the block grant, although these were on an individual basis – dependent on individual disability managers – an uncertainty which further highlights the need for a national standardised system of resource allocation. For organisations, there were developments in building an enabling work culture; the trust between service provider, the HSE and families was enhanced, and real and perceived value for money was experienced. These and other findings from the evaluation of individualised funding by Fleming et al. will be published in due course, with a view to informing practitioners, decision-makers in HSE, the Department of Health and the Department of Finance. Most importantly though, for individuals with a disability, their families, friends and advocates, the purpose is to help them understand the potential challenges that lie ahead with the individualised funding option, but also the potential life-enhancing aspects which can be expected.

Our evaluation of individualised funding in Ireland is due for completion in 2017, but our preliminary findings support the policy commitments and advocate-led call-to-action to introduce a resource allocation system to enable and strengthen individualised funding and support. Furthermore, it is important that service providers in Ireland are encouraged to learn from projects both in Ireland and abroad in order to fast-track organisational, family and individual learning. By so doing, there is a real possibility that a robust, accessible and sustainable system of individualised funding can be rolled out in Ireland over the coming years.

References

Bahadshah, Z., Johnson, C., Humphrey, J., Laidlaw, J., Vilvang, M., & Zebrof, S. (2015, 15 – 17 October). Improving Individualized Funding for End Users: An Example from British Columbia, Canada Paper presented at the Claiming Full Citizenship: Self Determination, Personalization, Individualized funding. 2015 International Conference, The Hyatt Regency, Vancouver, Canada.

Department of Health. (2012). Value for Money and Policy Review of Disability Services in Ireland. Dublin, Ireland: Department of Health Retrieved from http://health.gov.ie/blog/publications/value-for-money-and-policy-review-of-disability-services-in-ireland/.

Field, A. (2015, 15 – 17 October). Individualized Funding in New Zealand: A Study of FinancialImpact and Potential Cost Savings Paper presented at the Claiming Full Citizenship: Self Determination, Personalization, Individualized funding. 2015 International Conference, The Hyatt Regency, Vancouver, Canada.

Fleming, P., McGilloway, S., & Barry, S. (2015, 15 – 17 October). Individualized Funding: The Experiences, Barriers and Facilitators Associated with Implementing Four Pilot Initiatives in Ireland. Paper presented at the Claiming Full Citizenship: Self Determination, Personalization, Individualized funding. 2015 International Conference, The Hyatt Regency, Vancouver, Canada.

Genio. (2011). Individualised Funding. Disability and Mental Health Retrieved from http://www.genio.ie/multimedia/videos/disability-and-mental-health

Janson, A. (2015, 15 – 17 October). Building an Interactive Coaching Tool to Facilitate the Transition to Individualized Funding. Paper presented at the Claiming Full Citizenship: Self Determination, Personalization, Individualized funding. 2015 International Conference, The Hyatt Regency, Vancouver, Canada.

National Disability Authority. (2015). NDA Resource Allocation Research.   Retrieved from http://nda.ie/Publications/Disability-Supports/Resource-Allocation-Project/

PossibilitiesPlus. (2014). Living self directed lives – doing it our way. Retrieved from https://www.youtube.com/watch?v=vpeY6gMSZLo

Author Bio

Padraic Fleming is a PhD Scholar on the SPHeRE (Structured Population and Health-services Research Education) Programme. He is completing his studies in Maynooth University Department of Psychology and is funded by Genio and the Health Research Board (HRB). You can follow him on Twitter @padraicfleming.

The research is supervised by Dr. Sinead McGilloway (Director of Mental Health and Social Research Unit – Maynooth University Department of Psychology) and Dr. Sarah Barry (Centre for Health Policy and Management, Trinity College Dublin).

Sara Porzio details the work involved in sourcing a suitable autism day service for her daughter, and the disappointment in finding it removed at the last minute. She questions whether the health service values all people equally.

Francesca left school in June 2016 but her mother was shocked to discover that accessing a post school placement, in spite of the promises of politicians,  will not be easily achieved.
Sara Porzio, Francesca’s mother, contrasts how her daughter’s experience is so different for those students awaiting confirmatiion of their third level place and if disappointed in their first choice –  other choices are available.

7 - Sara Porzio - Autism Services Frontline article Sept 2015

My daughter Francesca has autism and graduated from St Paul’s Special School in June of this year.  In 2013, I had contacted our local Disability Manager.  She told me that the school and the family would have to identify a service that best suited her needs, and that Francesca would be listed for a day service placement in 2015.  Having discussed it with all concerned, we decided upon Gheel Autism Services.  We felt it would be an ideal, nurturing environment for her.  They have various small settings called “hubs” within our local community.  She would continue to learn and work towards more independent living skills, the service was for life and it would evolve as her circumstances changed.  We were very happy with our choice.

In February 2015, she was assessed at home by Gheel and we were told she would commence the new service on the 1st September 2015.  Gheel then arranged for their psychologist to come to the school and see Francesca and the other three pupils who would be joining her.  They also arranged for the pupils to visit a hub so that they could see it for themselves.  Having struggled since her diagnosis to access first a primary and later a secondary school, I was delighted everything was at last going so smoothly.  Having been involved in groups for people with special needs over the years I had knowledge of the difficulties other parents faced in accessing services in the past.  I foolishly thought we were the lucky ones.

Late May we had the first indication that storm clouds were gathering.  We received a letter from Gheel Autism Services stating that the HSE had not been in contact with regard to the funding and that a starting date of the 1st September was unlikely.  I contacted the HSE and was told there was a problem with the funding, and that service providers would not get notice of funding until late June.  On the 30th June we, along with 24 other families, were called to a meeting in Gheel’s office and were informed that due to a shortfall in funding they would not be in a position to offer us a day service.  We left the meeting that evening reeling with shock.  Outside the building the parents gathered together, united in our disbelief at the turn of events.  We hurriedly exchanged phone numbers, promising that we would all contact our local political representatives.

The summer passed in a haze of emails and visits to politicians’ clinics.  All to no avail.  Up to this point, we had been assuring Francesca that she would be starting her service on the 1st September.  She loved school and we wanted the transition between leaving school and beginning a day service to be seamless.  The HSE assured us that talks were ongoing and they were confident some agreement could be reached.

On the 14th August, two weeks before her starting date, we received a phone call from the HSE informing us that Gheel Autism Services were no longer an option and that the assessments were being passed to another autism service provider.  The Disability Manager told us that, realistically speaking, we would not have a day service until 2016.  The proposed service provider is based in Wicklow.  All the school leavers are from the north side of Dublin.  Their intention is to set up a service on the north side of Dublin but as yet have no staff or premises.  This is not the service I researched – this is not our choice for Francesca.  A service is being cobbled together at breakneck speed with reduced funding.  Nobody can answer questions as to what type of service it will be, where it will be, how many hours she will spend there because nobody knows.  Francesca will just have to wait while the HSE tries to sort out this debacle.

We did all we had to do within the correct timeframes.  The fact that these young adults were leaving school should not have been a surprise to the HSE.  On April 16th this year, the Minister of State at the Department of Health with special responsibility for Primary Care, Social Care (Disabilities & Older People) and Mental Health, Kathleen Lynch TD stated in the Dáil that “As long as I have been in politics there was a crisis-driven approach with people with disabilities coming out of training or school having nowhere to go in September.  We did not have such a situation last year and we will not have it this year”.  I foolishly believed this empty promise.

Francesca cannot leave the house unaccompanied.  She cannot be left at home unattended.  She is lonely and asking for school each day.  It is difficult to explain the situation to her.  The parents of the twenty-four school leavers have come together as a group to try and be involved in the decisions that are being made behind closed doors for our children.

The overall feeling at this turn of events is helplessness.  I wanted so much for the move from school to adult services to be easy for Francesca.  Just after we discovered she would have nowhere to go in September, the Leaving Cert Results were announced.  On the radio, representatives from the National Parents Council advised pupils not to worry if they didn’t get their first choice of college; there were always alternative solutions and various ways to access their goals.  I felt deeply that day that my daughter counted for less than a “normal” school leaver.  There was nobody from the Parents Council to advise us on choices.  The truth is they couldn’t advise if they wanted to as, while other school leavers have a myriad of choices, Francesca has none.  In the recent referendum there was much talk of equality and how much politicians valued it.  There is no equality for my daughter.

If you wish to contact the parents’ support group you can do so via their Facebook page “Gheel 2015 Parents Support Group“.

Author Bio

Sara Porzio is a working mother living in Artane in Dublin.  She has three children.  Francesca, aged 18 years, is her only daughter.

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

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

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

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

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

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

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

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

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

Author Bio

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

Kathleen Lynch, TD, Minister for primary Care, Social Care (Disabilities/older people) and Mental Health introduces Frontline's first e-publication and in doing so addresses the issues of Standards, Regulation and Quality of life.

Kathleen-Lynch-TD
High standards are expected with regards to our quality of disability services. HIQA inspect our services to make sure the standards are being met.
The recent events in Áras Attracta show that staff and management must be vigilant.
The National Disability Authority (NDA) is to conduct an independent review, one year on, by June 2015.

People with disabilities should be given the opportunity to live as full a life as possible and to live with their families, and as part of their communities, for as long as possible.

Every person who uses our disability services and our services for older people, is entitled to expect and receive supports of the highest standard and to live in an atmosphere of safety and care. It is important that we all continue to set our sights high and keep our expectations raised about what people have a right to expect of their services and of society in general.

The Programme for Government committed to putting National Standards for Residential Services for People with Disabilities on a statutory footing, to ensure that the services could be inspected by the Health Information and Quality Authority (HIQA). This commitment was fulfilled when two regulations, one relating to care and support and the second relating to registration issues, were approved and signed by the Minister for Health, with the scheme commencing on 1 November 2013.

The purpose of the regulations is to safeguard and support the delivery of person-centred care to vulnerable people of any age who are receiving residential care services and to ensure that their health, well-being and quality of life are promoted and protected.  Over 670 HIQA inspections of disability services have taken place to date.

The recent shocking events in Áras Attracta clearly demonstrated that in addition to the statutory regulations, there is an onus on staff and management in services provided by or on behalf of the HSE to safeguard and protect vulnerable people in the care of the health service. This is of paramount importance and the Director General of the HSE has written to all staff instructing them to take personal responsibility for ensuring that individuals supported by the HSE in any setting are treated with dignity and respect.

The HSE has undertaken a number of additional initiatives to ensure that quality and safe care in residential services for people with disabilities is appropriately implemented and monitored. The “Safeguarding Vulnerable Persons at Risk of Abuse – National Policy & Procedures Implementation” policy document was launched on 5th December 2014. It is relevant to all HSE and HSE-funded services staff. It builds on and incorporates existing policies in HSE Disability and Elder Abuse services, and in a range of other Disability Service providers.

If any readers of Frontline have concerns regarding patient care or safety, I urge them to bring it to the immediate attention of the service provider under the arrangements set out in these guidelines.

I have invited the National Disability Authority (NDA) to conduct an independent review, one year on, to capture learning to date from the introduction of the system of regulation, standards and inspections in relation to residential disability services. The review is to capture the experience, impact and learning from the introduction of the system of regulation, standards and monitoring of residential disability services, and also highlight the range of good practices which are in place.

I expect the NDA to have completed its final report and submitted to me by June 2015.

Finally, I can assure you all that as Minister for Primary Care, Social Care (Disabilities/Older People) and Mental Health, I and my Department will monitor progress on the initiatives and processes commissioned by the HSE in relation to Áras Attracta, to ensure that the lessons learnt from this incident will be driven throughout our health system to better protect vulnerable people.

Author Bio

Kathleen Lynch was appointed Minister of State at the Department of Health with special responsibility for Disability, Mental Health and Older People in March 2011.  In July 2014, she assumed responsibility for Primary Care while retaining responsibility for Mental Health, Disability and Older People under the Social Care element of her portfolio.

When I go in a front door and see Designated Centre/Health and Safety/Mission Statement notices on the wall, I don’t feel reassured. I feel I’m in an institution. The place for such things is the manager’s office. The test of a residential service is the quality of relationships between people living and working there.

Like many parents from the intellectual disability area, I welcomed the coming of HIQA. I thought it would provide useful oversight of services, safeguard people’s rights and provide an independent arbiter for complaints. What I didn’t foresee was another blanket of bureaucracy. Although my daughter is now beyond services, in her lifetime I had 25 years’ experience of them and believe they are best when small, open and informal. While a certain level of record-keeping is necessary, its contribution to service quality is limited. Even a short stay in hospital showed me how irritating it was to be ignored in favour of the ’notes’. How much more damaging for someone who spends every day in a centre!

When I go in a front door and see Designated Centre/Health and Safety/Mission Statement notices on the wall, I don’t feel reassured. I feel I’m in an institution. The place for such things is the manager’s office. The test of a residential service is the quality of relationships between people living and working there. I have read HIQA reports where one sentence adverts to the good relationship between clients and staff, while several pages document holes in the HIQA-mandated procedures. The question in my mind and that of other parents is: did HIQA miss the atmosphere in Áras Attracta by paying too much attention to tick-boxes?

The HSE and Department of Health reports talk a lot about new models of service, greater autonomy and participation in the community. My eyes glaze over when I read these clichés, not because there’s anything wrong with them as aspirations, but because they have become a cloak to conceal a lack of action on the most difficult problem in the intellectual disability sector: how to provide a service for people with very significant/multiple disabilities when their parents die or become too frail to care. There are different ways of doing this–some better than others–but all of them are expensive. And parents don’t die or get sick in a planned or designated way; though when a lot of them are over 70, foreseeing a number of emergencies each year hardly requires a planning degree.

In parenthesis, most people with intellectual disability don’t have such high needs–as long as they get the supported housing, the day activities and the back-up services immediately they require them. And that means somebody to assess changing needs, organise staff etc. It’s not a no-hands operation.

HIQA wants to be notified of all changes in disability services in advance and for these to take place in an orderly fashion. Good idea–if services were properly resourced to begin with. But in present circumstances where residential services are stretched to their limit, what can they do when a parent dies inconveniently, when a client breaks a leg and cannot use their ‘designated’ bedroom, when the sudden challenging behaviour of one client threatens the safety of others? In the normal world (remember normalisation?) people improvise temporary solutions–put the bed in the sitting room, install a chair-lift, persuade family members to double up or move to granny’s. But HIQA regulations don’t hold with that sort of thing. You can’t use the next door day-centre temporarily, if it hasn’t been designated, or have someone sleep in the sitting room. One suggested HIQA solution was apparently to return the client to the HSE–in a worst-case scenario to a hospital emergency room. And what happens then? The person is suddenly decanted to an unfamiliar service. How person-centred is that? Is there an understanding of the level of distress this causes–and the level of anxiety unleashed among parents by such suggestions?

The voluntary providers have not got a good press recently; but they are the mainstay of the disability sector; when they’re good, they provide continuity, motivated staff and a commitment to the person. Now they are caught in the pincer grip of the HSE and HIQA. Because of its ongoing deficit, the HSE’s main concern appears to be saving money. The Service Level Agreements (SLAs) it imposes on voluntary providers come close to demanding the impossible: complete responsibility for a growing and often ageing population with ID, with whatever annual funding the HSE decides, and with reduced staff numbers. HIQA, having consulted on and published its apparently user-friendly Residential Standards for Disability Services, then brought in different statutory regulations based on the Nursing Home ones. There is no guidance on priorities; although, if I were in a service, I’d put staff kindness, freedom from abuse, decent food and health care way before care-plans or building designation.

At present the demands of the two state agencies seem incompatible and the struggle between them is being played out at the level of services, sometimes to the detriment of clients. When standards were first mooted, an incremental approach was suggested–with priority standards introduced at once and others over a period of years. HIQA needs to consult with the HSE over the costs of what it mandates–in terms of money and staff. And one thing it does need to do is to accept individual complaints.

Author Bio

Máiríde Woods is a writer and researcher and has been involved with disability matters for many years. She had a daughter with disabilities and has written many articles for  Frontline.

She has undertaken research on disability and worked  as an Advocacy Executive with the Citizens Information Board.

Máiríde has a Masters in Equality Studies from UCD. She has received a number of prizes for her writing. She has published two collections of poetry and has had stories included in several anthologies and broadcast on RTE.

Máiríde was brought up in Cushendall, Co. Antrim but has spent most of her life in Dublin.

Andra and her family live with Kyle’s Autism and Epilepsy in a tough environment for services, which brings the concept of Quality Of Life sharply into focus…

Kyle
Quality of Life can mean a lot of things to society as a whole. For most people, it means a good job, nice house and car, family and money for luxuries, and then you are pretty much all set –  right?
Well, for families living with a child or children with disabilities, that is all turned on its head. Don’t get me wrong – we all want these things, who wouldn’t? But we need other things, that will provide a necessary quality of life for our children and families as a whole.

Quality of Life can mean a lot of things to society as a whole. For most people, it means a good job, nice house and car, family and money for luxuries, and then you are pretty much all set –  right?

Well, for families living with a child or children with disabilities, that is all turned on its head. Don’t get me wrong – we all want these things, who wouldn’t? But we need other things, that will provide a necessary quality of life for our children and families as a whole. We need to have the necessary services from the HSE to be put in place, to lessen the burden on families. The lists of children who need help seem endless. Parents are forced to go privately for things like Speech and Language Therapy, Occupational Therapy and Assessments.

A family living with a child with disabilities will spend any spare money they have on therapies, in the hope that it will improve that child’s outcome and maintain their quality of life in adulthood. This is not a luxury, but a necessity in the lives of many families. The lack of these services (or indeed the money to pay for them), can have a major effect on quality of life for these families, and not for the better. Parents worry that they are not able to do enough for their child, and the guilt that comes with that can cause stress, depression and in some cases burn-out.

The other issue here is many people have to give up their jobs to care for their loved one. They may become dependent on the state, in which case financial circumstances can quickly deteriorate. People can easily become trapped in a social welfare system that is designed to make it as difficult as possible to access any supports for their child and themselves. That can have huge implications, reducing quality of life to mere existence. How can that be acceptable for the family as a whole?

I have a son called Kyle who has Autism and Epilepsy. We have been living with this diagnosis since he had his first seizure at the age of two. It turns your world upside down in a way you had hoped would never happen, but it has and we have to get on with it. One of the first things you think of when you are given a diagnosis for your child is the kind of quality of life will they have in the future. You worry. What will happen to him when we are gone? Will he live independently or need care? The fear of the unknown, and the what-ifs, are crippling at times. You have to make a choice for your own sanity, to live in the here and now. That doesn’t mean not making plans for his future – it just means trying to cope as best you can, and look at life as positively as possible. In my case, it means enjoying my son, and letting him be the child he is and not who I may want him to be.

We celebrate things that he does, that would be minor to a neurotypical child, but is a big deal for him. We take joy wherever we can find it – let’s face it, the alternative of constantly looking at the negatives of what he cannot do are just too overwhelming to deal with. God knows, we hear it often enough from professionals and their reports, that have a habit of knocking you sideways when you least expect it.

There is something about having the negative things written on paper that seems to take the wind out of your sails. It suddenly seems more real, more permanent than the spoken word. These reports make you fearful for the future – I don’t want him to be forced into a regimented care system where the things he enjoys are limited to him or he is put in front of a TV to just sit and be quiet for the rest of his life. Or worse, to be abused by people who care for him (and I use that term in the lightest sense) – he deserves so much more than that, and so does anyone living with a disability. They have the right to a good quality of life, in which they or their families can have an input. It’s really not a big thing to ask – we only want him to be able to live his life with dignity and respect, and have his voice heard. That is what we are working towards.

There are a lot of things that can improve quality of life for my son. Therapies are certainly among those, but education about disability in society is another one. This is vital for changing attitudes. People are still fearful of disability – maybe it’s because they don’t know much about it and are too embarrassed to ask for fear of upsetting you, or maybe it’s because it doesn’t affect them so why should they care? But they should care – disability can happen at any time to anyone and being blasé about it is just not good enough.

There are changes happening that will help in educating people about Autism. An example is Adam Harris and AsIAm (Autism Spectrum Information Advice and Meeting Point, www.AsIAm.ie), who are rolling out an education program in secondary schools around the country and it is having a positive impact on students. They are now extending it to the work place too, and I believe this type of initiative will make for a more inclusive, tolerant society as a whole. It’s all well and good to talk about awareness and acceptance, but it starts with education – only then can we hope to bring about change and give children and adults with Autism an acceptable level of quality in their lives. The following video gives a short explanation of what AsIAm offers:

Schools have a part to play, in providing quality of education. Kyle is lucky enough to attend Solas at Scoil Niocláis Naofa, Dunlavin, an Autism Unit attached to a main stream school. It caters for 12 boys, aged from 6 to 11 years, with varying degrees of Autism. He has been in this school for the last two years and we believe it’s the best decision we’ve ever made to send him there. He has flourished in a small setting, with more one-on-one support and teaching than he was getting in mainstream school, and it has made a huge difference to his quality of life. He is taught life skills, like going to the shop, cooking, cleaning up after himself and more.  He takes pride in being able to do these things and that in turn makes us so proud of how far he has come.

However, not all schools are as progressive as Solas and that is something that the Department of Education needs to address. I believe that there should be more specialised training for teachers in the area of disability, and that it should be mandatory, as so many children are falling through the cracks because of inadequate training or no training at all in many cases. Teachers are often not equipped enough to deal with it, through no fault of their own. Solas Dunlavin is a shining example of how things should be done – however, they need funding just like every school, to provide therapies for children with Autism, as you can see in this video:

Finally, the one thing that I think would improve quality of life for all families of children or adults with a disability is to make accessing services, schools, entitlements and benefits easier for them. It’s not the coping with the disability that we find the worst thing to deal with – more often than not families have accepted it. It’s the constant battle with the powers that be to give us the meagre help that we need, and that is what wears down a parent and diminishes our sense of our worth. Please give us the respect that we deserve in caring for our children. We are not asking for much! Just a decent quality of life.

Author Bio

Andra Johnston is the mother of two children – she was formerly voluntary director of Sensational Kids Charity & Parent Liaison Rep. for the Special Needs Parents’ Association (SNPA).

by Mary De Paor

The UN Convention on the rights of people with disabilities, published in 2006 and promptly signed by Ireland the following year, has still not been ratified by Ireland. Partly that is because of the long delays in passing into law the Assisted Decision-making (Capacity) Bill 2013.That bill has been ‘in the pipeline’ since it was first proposed in 2008 by the Minister for Justice (then Dermot Ahern). Unfortunately our legislators have been convulsed by other (aqueous) pipelines recently, and the Bill remains at committee stage, with no apparent prospect of advancement during the current Dáil term.

In the last twenty-five years, many hefty tomes of policy documents have been published in the arena of intellectual disabilities in Ireland—from Needs and abilities (1990), A strategy for equality (1996) to A time to move on from congregated settings (2011) and New directions (2012).

The UN Convention on the rights of people with disabilities, published in 2006 and promptly signed by Ireland the following year, has still not been ratified by Ireland. Partly that is because of the long delays in passing into law the Assisted Decision-making (Capacity) Bill 2013.That bill has been ‘in the pipeline’ since it was first proposed in 2008 by the Minister for Justice (then Dermot Ahern). Unfortunately our legislators have been convulsed by other (aqueous) pipelines recently, and the Bill remains at committee stage, with no apparent prospect of advancement during the current Dáil term.  We in the intellectual disability community are crying out for our people to shed the labels of the Lunacy Act 1871—and, nearly 150 years later, to be given the legal status to participate as fully as possible in Irish life. Real Irish life.

Moving ahead: Mapping the national disability policy landscape (Linehan et al, 2014) provides a summary of the ‘six high-level policy documents [that] have been published which propose radical reform of the disability sector …. This raft of policy is complimented [sic] by other publications emanating from semi-state bodies such as the National Economic and Social Council and the Economic and Social Research Institute. The sheer quantum of policy reflects a prioritisation of reform within the disability sector by Government’ (p.12).

Accompanying policies, we also have strategies. In 2011, The Department of Environment, Community and Local Government published a National housing strategy for people with a disability 2011-2016, the ‘vision’ of which was ‘to facilitate access, for people with disabilities, to the appropriate range of housing and related support services, delivered in an integrated and sustainable manner, which promotes equality of opportunity, individual choice and independent living’ (p.7).

The National implementation framework for the housing strategy was published in July 2012, and the First report on implementation, September 2012 – December 2013 said that Housing Subgroup was providing ‘a suite of guidance tools … to assist housing authorities in implementing the Strategy at local level in order to meet the housing needs of people with disabilities living in the community and transitioning from institutional care.’ This included ‘an interim protocol in relation to the provision of housing supports for people with disabilities,’ adopted for implementation by local authorities in May 2013. An Easy to Read version of the Strategy was also published (in 2013) to help people with intellectual disabilities to access information on housing options. There was also a ‘scoping paper’ in relation to the establishment of a number of pilot Housing Advice Centres to provide an integrated approach to the provision of information for people with disabilities on their housing and related support needs. The Strategy was a ‘priority action under the Government’s National Disability Strategy Implementation Plan’, and a ‘housing thematic meeting was held by the NDS Implementation Group in December 2013 which provided a wider range of stakeholders with an opportunity to input into future policy.’

The implementation progress report included financial considerations. Some sums had been ‘ring fenced’ by the Departments of Health and Environment for a pilot programme of deinstitutionalisation following the congregated settings report. However, the report stated: ‘It is recognised that there is no dedicated funding stream to support the personal support needs of people living in communities who wish to pursue a social housing option. This issue will be examined in the context of work to be undertaken by the Housing Subgroup in 2014 in respect of tenancy sustainment services and costs to facilitate independent living in line with the UN Convention of the Rights of Persons with Disabilities.’

Another future-tense policy statement was that ‘the DECLG will continue to explore mechanisms to increase the supply of social housing for people with disabilities, including through engagement with NAMA on the delivery of units which may be suitable and opportunities arising in the context of additional investment in local authority housing in 2014 through construction and investment to bring long term vacant units back into social use.’

Most recently, we have the Social Housing Strategy 2020 (November 2014), which incorporates (in ‘Box 3’, p.16) the disability strategy. If you print out the document you can monitor the delivery of 37 social housing strategy actions in five ‘work streams’, over the five years of the strategy implementation. The actions include familiar terms: ‘agree targets’, ‘commence legislation’, ‘strengthen’, ‘carry out an internal review’, ‘carry out detailed analysis’, ‘consider the development of’ …

– – – – –

Ireland is very good at devising impressive policies. A quick search on Google shows many more like those above. Canny Frontline readers-between-the-lines may have guessed that this author is a policy-cynic! We talk the talk, but …

Recently, I attended a meeting at an ID support service where parents voiced raw concern for their family member’s support needs, and for a place to live independently. Despite very innovative thinking within services, the 20% reduction in their funding over the past five years has inevitably led to staffing reductions and programme retrenchments. It can seem a very gloomy world.

But, we need to focus on the positive. Never mind the policies—they only lead to disillusionment and frustration. It is more important for families to learn more about the real ‘system’, its possibilities and limitations. They can find advice from the Citizen’s Information Board, or training from Inclusion Ireland, Pathways for Possibilities or Leap. (online editor: can you put website links here please?). Collaboration is vital—with their family member’s disability service and with other families (see Avril Webster’s article in Frontline (Autumn 2013, 92, p.7).

People with disabilities have been ‘mainstreamed’ by the policy world—it has been beneficial in some ways, but also costly. National resources are limited. We in the world of intellectual disability must accept that others in our society also have ‘special needs’. We can only fight for an equitable share, by strongly advocating for the valid and demonstrable support requirements of our people. And we need to add our own resourcefulness to the equation as well.