Friday, April 28, 2017
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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).

Anna Kingston regrets the loss of so many of our young people to emigration, and makes a compelling case for meaningful occupation for people with intellectual disability in modern Ireland.

With a firm focus on a rights agenda, positive action is needed to forge new partnership with families so people with intellectual disability can enjoy fulfilling lives, Roy McConkey holds that just as the emergence of community based services in the 50’s ushered in the closure of institutions, the personalization philosophy of contemporary efforts will bring about radical changes in the way services are delivered.
Given that family care giving extents beyond childhood and can often be life long, family perspectives will be central to the way series are developed and delivered now and in the future.
The central theme of the importance of the sound relationship that professional service providers have with families first and foremost must be based on trust and respect. This is central in order for the individual is to have a good life.
Families benefit from information and mindful coordination of services.
This article gives testimony to the fact that the best is yet to come.

Youth unemployment in Ireland is currently over 22 percent, and Irish parents are heartbroken watching their young adult sons and daughters emigrate to far away shores for work as there is nothing here for them. As difficult as this is, these young people are, in my opinion, lucky as they are able to emigrate and find a meaningful occupation elsewhere.

In contrast, there are thousands of young people in Ireland, willing and capable of working hard who cannot leave this island as they would not be able to do this on their own. They have special needs and in need of that little bit of extra support in order to carry on with life. Packing their bags and heading off to a foreign country is not an option.

So what is on offer for these young men and women who have mild intellectual disabilities (or any degree of disability for that matter?). Not much really. Some service providers offer a place in a day service or community support service. Sounds great in theory and may even work really well in practice. They get to socialise with peers and do some fun stuff like bowling or going to the gym. Some might even get a few hours voluntary work during the week and if they are really lucky, this might lead to paid employment.

Paid employment, however, is more the exception than the rule and in order to secure paid employment you would have to tick a lot of boxes. The young man or woman would have to behave more or less like any hard working, well behaved and fast moving employee with no obvious impairments. Needless to say that a large group of young people in Ireland with special needs is left outside this paid employment and have lots of leisure time and very little money.

Judging by my 23-year-old son’s daily activities and those of his peers, there is a lot of time left to spend at home, in front of the computer. He has an hour here and an hour there during the week, mostly consisting of voluntary work and social activities during day time. His only paid work is one hour a week in a café run by the service provider at minimum wage. Maybe he should be lucky that he has anything at all? But no, I’m not buying that.

My son is an outdoor person, strong and agile. He would be a huge asset to any employer dealing with keeping the countryside clean. Give him a job gathering rubbish and recyclables along the roads or in public parks and he would work harder than any county council worker. This is obviously not an option as his current community placement has ruled this out. There is apparently a blanket ban from the county/city councils to employ people with special needs? And at the same time the littering is getting worse as people obviously don’t know how to dispose of rubbish properly.

If we lived in Sweden, the city/county councils would have to find employment for him. He would have the right to a meaningful daily occupation of at least 40 hours a week. Most likely he would be paid to do something he would enjoy, such as helping keep the countryside and city parks tidy. Sweden enshrined in law in 1993 the right to support and services for people with disabilities. This includes a meaningful daily occupation of 40 hours a week, or less if the person decides less is better.

In Sweden, socialising with peers, such as going to the cinema or bowling, is for the evenings after work. This is the case also for most people who are employed during the days.

Why do we accept that our young sons and daughters with disabilities are treated as unemployable? Why do employers in the public sector decide not to give these young people paid employment? Why can we not enshrine in law the right to a meaningful occupation for people with disabilities?

It is not good enough to offer leisure activities instead of employment opportunities. All service providers should knock on doors and make loud noises in order for employers (private and public) to open their doors to those young people who do not have the option to emigrate.

Author Bio

Anna KingstonAnna Karin Kingston is a Swedish journalist living in Cork, Ireland, since 1989. She has a PhD in Social Sciences (UCC) and is the author of “Mothering Special Needs: A Different Maternal Journey “(1997) and the book chapter “Mothering Adult Children with Special Needs: Handing in the Uniform” (2013).

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.

Derek McNamara makes the argument for a refocusing of the client-staff relationship in Intellectual Disability services across Ireland in our modern, policy-driven world.

It is my experience that trust, real trust, that is essential to the therapy process, has always been something that has taken some time to build up with this client group, due to the years of having their information indiscriminately passed from one staff member to another and the belief that I am just another person who will do this.

“I hate my file, it only ever says the bad things I do and never says anything about any of my good days, it makes me not trust anyone as anything I say goes in that damn thing.“

I have been lucky enough as a psychotherapist in private practice to work with a lot of men and women who have intellectual disabilities and this opening quote has come from that work. Something that is continually coming up for my clients in recent times is their ‘fear of the file’ and the desire to have it destroyed by any means possible. Services that support adults with intellectual disabilities in residential settings have begun to pay this area a significant amount of attention due to the presence of HIQA and its standard that ‘Each individual has a file’ (Standard 19.4).

It is my experience that trust, real trust, that is essential to the therapy process, has always been something that has taken some time to build up with this client group, due to the years of having their information indiscriminately passed from one staff member to another and the belief that I am just another person who will do this. As a result of this phenomenon, therapists such as myself have dedicated themselves to the task of trying to find ways to assist persons with intellectual disabilities to find their voice and share their inner worlds, through the various safe mediums of psychotherapy. To date I have always managed to find a way to build this element of the relationship but am finding this increasingly difficult due to the new rigorous HIQA requirements and the silencing nature it is creating among the intellectual disability community.

Due to their dependence on others it can be difficult for adults with intellectual disabilities to express their anger in constructive ways about these things, and so the silence is created. McCormack (1991) tells us that we are most handicapped when we are powerless, and conversely, overcoming handicap involves overcoming the obstacles to empowering oneself- One client I am currently working with has reported feeling like a “puppet on a string” and holds the belief that “staff have too much control over my life”. Another client recently told me that “I don’t feel like a priority in my own life anymore” and went on to draw a self-drawing with no legs and no face. When the picture was explored, that person told me how having no legs represented the feeling of being stuck when it comes to the service and the demands imposed to be good “for the files sake” and the omitted face represented the loss of self-identity felt in the process.

So why is any of this important? It is my strong opinion that the lack of trust towards those who are paid to support this client group and the damaging affects their silence and anger can cause, will serve only to set them back 30-40 years, rather than help them move forward as is the intention of the new legislation and standards being rigorously adopted by services across Ireland.

I feel it important at this point to highlight that this article is not being written to find someone to blame for this phenomenon, whether they be frontline staff, senior management or the policy makers themselves. I am writing this piece to shed a light on an Irish culture which has become obsessed with documenting, to the extent that the time that needs to be spent on empowering, and most importantly listening, to our clients is being forgotten. The crux of this article and what is being highlighted is my observation of the emotional neglect of individuals with intellectual disabilities taking place in 2015-policy-driven Ireland.

What I have seen through my work with clients with intellectual disabilities is that the new standards and policies seem to be under-appreciating the need to pay attention to the emotional life of those being supported by services. Professionals in the field of intellectual disability often seem reluctant to treat and investigate emotional difficulties, preferring to concentrate on service planning and development, de-institutionalisation and the modification of behaviour (Arthur, 2003), as is currently happening in Ireland.

It is my belief that there is a need for two things to happen in the modern day service to overcome this. Firstly,  a refocusing of attention back onto the relationship between staff and the clients they support is needed, with an emphasis on using the relationship to focus on a person’s emotional life, rather than priority being given to fulfilling paperwork standards. Secondly,  a creation of space within services where all staff can meet monthly with an external facilitator, in order to process some of the effects of the work on them (Cottis, 2008), as in order to be open to our clients’ emotional lives, we must be aware of our own difficulties when facing them.

Research suggests that providing psychological consultation to staff responsible for the care and support of people with learning disabilities facilitates emotional development, improves staff–client relationships, decreases symptomatic behaviour and helps improve quality of life (Arthur, 1999), and it is this which has been lost in our policy-driven culture. I hope this short article has redrawn attention to its need.

Author Bio

Derek McNamara MIAHIP,is a disability psychotherapist working in private practice in Dublin.


by Stephen Kealy, Editor, Frontline.

Stephen Kealy
Quality of Life is based on people’s rights but enough money needs to be provided to realise this goal.
People with disability are not always supported to speak up about poor service.
Funding cuts are affecting service-users, staff, services and families.
Our leaders need to be on the ball to make Quality of Life a reaistic goal.

Consumer protection is valued by any person purchasing a product or service, and the supporting legislation is robust. Essentially, consumer legislation is there to protect the public from shoddy goods, services and practices. Manufacturers of goods and many providers of services endeavour to provide something that others will recommend, not only for the value offered but also for the quality. Yet to equate Quality of Life with consumer protection is trite. Quality of Life has to be rooted in rights, the reciprocal sort – rights for the person, rights for the people providing services. But rights become aspirational if there are insufficient financial resources for implementation.

In our schools, time is taken through the Stay Safe Programme to inform children about the need for self-protection – to be alert to bullying, and sexual predatory behaviour – essentially providing tools necessary for self-protection and expression. The implementation of the programme is calibrated to each child’s level of understanding. However, disabilty services have no similar, equally calibrated, national programme. If they had – is there a greater possibility that people with intellectual disabilities would be empowered to speak up more often for themselves in cases of questionable practices or poor service? The absence of such programmes is illustrative of undervaluing people with intellectual disabilities.

At the recent Inclusion Ireland Annual General Meeting, some parents identified difficulty in getting services to engage with them in a constructive and responsive manner. Indeed, some of the reported responses suggested an extraordinary mismatch between what was stated on the tin and the actual experiences of parents and extended family members. Some family members, unbelievably, in this day and age, expressed a concern that if they challenged the service they might be requested to remove their son or daughter. The questions asked at that meeting raise the issue as to whether there is a shared understanding among service providers of rights-based legislation and the balancing of rights with protection, independence and self-empowerment. However, of crucial importance in this equation is the continued under-resourcing of our intellectual disability services. Is it that the HSE expects providers to do more for less to the extent that insufficient attention is sometimes paid to the incidence and prevalence of intellectual disabilities throughout the country?

Disability services are exactly that – a service to the person and their family members, and yet the amount of ‘consumer protection’ to ensure a “quality mark” is in fact wanting. Again, a factor which cannot be ignored, is the serious funding shortcomings over the last few years. It is difficult to operationalise an individualised programme for and on behalf of people with an intellectual disability if there is little designated money to implement it. A further downside of this is that staff can become demoralised, unmotivated, and indeed disillusioned. Congregated settings may absorb a lot of money but community-based services may not necessarily cost less if you want to meet those hallmarks of a quality, inclusive and integrated service.

HIQA, following planned and unplanned visits to designated centres, has not only uncovered poor practice but also serious shortcomings signalling questionable Quality of Life outcomes. HIQA inspections do not necessarily address Quality of Life measures. If a HIQA inspection is structural, administrative and process-oriented, then those Quality of Life hallmarks – relationship, reciprocal respect, and self-empowerment may not be adequately engaged. Frontline staff are ‘trained’. However, training of itself does not necessarily lead to a quality service, if there is a culture, sometime pervasive, which has limited understanding of the rights of people with intellectual disabilities.

The provision of a quality of service that meets all those Quality of Life hallmarks depends on the leadership and the culture of the service. If leaders do not know each nook and cranny of their service, then cultural silos can flourish. Moving people from a congregated setting to the community is unlikely to bring significant change in a person’s life if the cultural framework from the congregated setting also travels to the community. The embedded culture has to become can do – overcoming obstacles, making things happen, pushing the boundaries. Yes, HIQA’s remit is to be the Quality watchdog for disability services, but in its first stages some service providers may perceive it as emasculation rather than an opportunity to give the best possible service.

No regulatory body, no matter how vigilant, can make people behave respectfully to people in their care, nor indeed can any amount of training, if the culture of the organisation does not have zero tolerance for staff behaviour that minimises engagement or ignores the human rights of people with intellectual disabilities. However, it is difficult for staff to actively engage if the financial resource is spread so thin that going the extra mile is just not possible without extra resources.

Quality of Life flourishes in a culture of support where reciprocal respect is fostered in the sprit of self-empowerment for people with intellectual disabilities. But staff have also to be empowered to realise the possible. The environment should support their rights, not only through adequate financial resources, but also by ensuring that staff embargoes do not prevent the implementation of decent accommodation, food, and appropriate & individualised care standards. If basic rights are not seen as a priority, then an approach to having “rights-based services” becomes just a platitude.

Quality of Life is so important for psychological wellbeing – yet it is often elusive for people with intellectual disabilities, and indeed for many people without a disability.

Quality of Life is achievable for people generally, if adequate funding for long-term improvement is available.

For people with intellectual disabilities, Quality of Life is more easily achieved in an environment where leadership, rich in imagination and the understanding of the possible, is in place, not only from service providers but also from the Minister responsible for intellectual disability services.

Anita Stefańska, PhD, University of Poznań, Poland discusses the benefits of drama and theatre in education for people with intellectual disability

Understanding, for people with intellectual disabilities, the inter-subjective relationships of the social world through drama, is a rich source of further study. Further research should also analyze theater projects through which the disabled person has the chance to show his moral attitude, which this article has sought to address.

AnitaBoosting resourcefulness and optimism in people with disabilities, by highlighting their independence and involvement in the creative process, is one of the objectives of the author’s concept of the theatre therapy named Theatre of Thought[1]. Theatrical techniques are used to help reduce resistance against the disclosure of one’s own emotional experiences, help in realising one’s beliefs, expectations and aspirations; this is in turn an expression of the behaviour involved in communication, and promotes a better understanding of each other for the participants.

Theatre provides considerable potential, with all of its connected exercises of playing, interaction and communication activities, as learning processes that go beyond the aims of theatre as art: the social learning and learning for personal growth according to the spirit of humanistic psychology. About the middle of the 1980’s, some theatre practitioners, pedagogues and therapists formed the idea of a therapeutic perspective which lay in theatre playing, and decided to explore it systematically.

Role-playing real-life situations and watching others do so allows   participants to rehearse a skill until it becomes part of their skills repertoire.

Role-playing

Just like all of us, cognitively impaired individuals have a life story and the need to be heard. They also have a need to create. This form of therapy employs the language of arts to promote healing and well-being. This form of therapy employs the language arts to promote healing and well being. Benefits include cognitive stimulation, reminiscence and reflection on one’s life story, a therapeutic release of life’s stressors, and facilitation of meaningful communication.

Despite their differences, drama therapy and formal theatre are moving closer together. Drama therapy also gives people the opportunity to change their life’s narratives. Creativity is the birthright of every human being.

Using experiential drama therapy and role-playing to teach emotions and body language, participants can be in control of their emotions. As in theatre class, we train them how to act in certain situations-what emotions look like. This is a safer place in which to experiment. Another strength is that drama therapy potentially uses many other modalities, including the visual arts, music, dance, poetry, and movement.

Drama Therapy/Theatre Therapy

The meaning of both terms is similar[2], sometimes used interchangeably[3]. Drama simultaneously engages the human mind and spirit. This form of therapy uses drama/theatre processes and products to achieve symptom relief, emotional and physical integration, and personal growth. It facilitates the client’s ability to tell his/her story, solve problems, set goals, express feelings appropriately, extend the depth and breadth of inner experience, improve interpersonal skills and relationships. Drama techniques – are the everyday tools of the drama teacher. They help to develop enquiry skills, to encourage negotiation, understanding and creativity. Cognitive and communication skills are maximized, creativity and individuality are fostered; and physical activity is encouraged. Such therapy builds community and strengthens self-esteem.

In drama therapy, participants acquire knowledge of themselves by creative and artistic activities, provided they participate actively. The degree of involvement in the creative process, to some extent determines the willingness to reveal the realm of their feelings, passions and dreams. It often happens that participants take on tasks that would be commonly assessed as exceeding the psychophysical capabilities of a disabled person.

The key element of drama therapy with intellectually disabled people is the focus on the person having the ability to overcome the difficulties of their lives by making independent choices. This kind of therapy requires therapists to watch how actors approach the play, how they communicate and interact with other participants, whether they are patient enough to work in a team, how they focus during the task, and in what situations they fully succumb to the sheer pleasure of doing something. These types of behaviours give the foundation for a feeling of having a positive impact on the environment, and ultimately develop confidence.

Participants viewed their satisfaction with the course differently. For some, it was achieving self-acceptance in some extraordinary situations, while for others; it is establishing positive relationships with previously unknown people. In the course of creative activities, some accumulated tension and feelings may get released, causing for some a barrier to their expression and understanding of feelings. The spontaneity of expression in theatrical techniques lowers the resistance to block the disclosure of one’s feelings. The experience of personal change in a drama group also brings the hope of transferring those skills into everyday life[4].

[1]  The author’s own concept of  The Theatre of Thought is described by the author in: A. Stefańska  Teatroterapia jako metoda kształtowania poczucia godności u osób niepełnosprawnych,   Poznań- Kalisz 2012,p.233-249

[2]A. Stefańska: Wokół podstawowych haseł teatroterapii. Cz. 1. Próba ustaleń terminologicznych.see:http://arteterapia.pl/wokol-podstawowych-hasel-teatroterapii-czesc-i-proba-ustalen-terminologicznych/ data dostępu 10-12.2014

[3] L. Neuman: From the German theatre therapy practice. In: L.Kossolapow, S. Scoble, D. Waller (eds.) Arts – Therapies – Communication Vol. 3. Europeran Arts Therapy. Different Approaches to a Unique Discipline Opening Regional Portals. Lit Verlag, Muenster, 2005, p. 337 -339., Mitchell S: Therapeutic theatre: a paratheatrical model for dramatherapy. In: Jennings S., (ed.) Dramatherapy, theory and practice for teachers and clinicians. 2. London, Routledge 1992.

[4] I Yalom, M.Leszcz :Psychoterapia grupowa. Teoria i Praktyka. Kraków 2006, s. 487–491.

Martin and Evelyn Conneely take us on a tour of holidays with their son Jack…

Jack-at-the-Matterhorn

From a drawer in the wilds of Connemara to a five star hotel with a view of the pyramids, Jack, our “special” son, has had plenty of exposure to holiday experiences.

He is an only child, born in 1990- Our early holidays with Jack were with family in Galway.   We  had the use of a deserted house near Maam Cross but did not have a car and our luggage had to be minimal.  So the paraphernalia now associated with babies was not a runner for Jack.   Which is how he came to be sleeping in a drawer on his first “holiday”.  He coped well with the intermittent lack of running water in that old house and was fascinated by the spiders and the open fire.  Due to broken fences, the house was always close to invasion by sheep, an excitement he loved.  The little stream that ran through the front “lawn” of that house was a source of intense interest to him as a dam-builder.

An early digestive problem had been resolved by then and there did not seem to be any particular angles arising from his “special” status.  When foreign holidays became possible, it never occurred to us that our freedom would be less than other parents and we were also very inclined to ramble by our natures.  We had no-one to compare Jack to.  Any youngish child would need to be carefully minded anyway.  His health has also been very good for decades, which was a great help,  though we learned to always bring antibiotics as they came in handy a few times.

So Jack had his first plane journey at age 4, when we went to Spain.   From then on, he became used to planes and the pre-9/11 airport routines were not as stressful.  On planes, he loves to study the menu and order his choices.  He also participates in finding the transport to the accommodation when we arrive and the sorting out of luggage and claiming spaces.   He is by nature a water-baby and those early outdoor pools in Spain, and later France, and even a strange camp in rural Czech Republic, were a joy for him, with slides, pool games, and usually an ice-cream break.

His uncle’s London house also provided an exciting holiday venue in his very early days, where he learned to love the roundabout in Covent Garden (not to mention the delights of the ice-cream there), the Science Museum, the boats on the Thames, the British Museum, the London Transport Museum and all the other buzzes provided by London in the 1990s, when it was a little less frenetic.

Soon after buying our first car, we tried out camping in Ireland.   An early favourite was the Nore Valley Camp in Bennettsbridge, Co. Kilkenny, which includes a farm, with animal feeding and petting each morning.  He took very much to the tent and the sleeping bags and the crazy golf there.  The excitement of close access to the petting animals proved too much for him once, in his early days, and he “borrowed” a rabbit and ran back to the tent with it.   While that campsite is “strict” and would be a disappointment for those who wish to drink, dance and sing in the early hours, the watchful stance of the owners is beneficial in our circumstances.

This “Kilkenny camping” is now an annual event.  We have been joined there for many years by  his close friend, John, and our presence is not very necessary when they are a pair.  They love the freedom, the fresh air, the trailer rides and breakfast al fresco beside the tent (or in the barn-with-a-view on rainy mornings).

Dingle is another favourite camping spot, and it also provides an opportunity to meet Fungie, an acquaintance renewed annually for many years.  The boatowners in Dingle were very kind to him and he often travelled free.

Dingle---the-Fungie-substituteThe camping experience in Ireland emboldened us to try something similar in the US and Canada and we did epic journeys there, for example travelling from the top of western Canada down to Malibu in the suburbs of Los Angeles.  Jack took it all in his stride, from the wild campsite in Port Hardy where animal skulls marked out the longterm pitches of regular clients (probably fishermen or loggers who came and went at intervals) to the camping site in Malibu Creek National where MASH was filmed long before we camped there.

We also did the conventional stuff, like a studio visit to Warner Brothers, the LA Tour of Celebrity Houses , presenting each other with fake Oscars outside the Kodak Cinema in Hollywood, walking  across the Golden Gate Bridge and,  when in Cape Cod, whale watching.   Boston’s Duck Tour was also a hit with all of us.

Jack, Evelyn and Martin-at Lake Louise, CanadaAs intrepid travellers, the three of us have also shared hairy moments.  A bear alert woke us one night in Yosemite, we overturned on a raft in the Czech Republic, a park bench was under serious consideration as a bed when we misread an Italian train timetable and had no connection at midnight, we lost our car in Siena for hours (a habit we also acquired in Dublin Airport until Jack copped on about taking a photo of the row and letter when we parked), torrential rains and winds have smashed our tents, and mosquitoes and other bugs have tortured us.  But we’ve made it this far.

Jack and ourselves loved our marathon Egyptian odyssey – six flights, a river Nile cruise, a tour of the Egyptian Museum in Cairo, a week in Luxor with King Tut’s gaff just across the river from us, and up at dawn to visit the Valley of the Kings, the searing heat of Aswan and a tour of the famous High Dam built in the 1960s to control flooding on the Nile.

He became a connoisseur of aquariums, being very impressed by the one in San Francisco and adoring the Beluga whales in the Vancouver Aquarium.  There had been so many greatest hits, that the outstanding Genoa Aquarium was nearly a chink too wide.  Vancouver’s Stanley Island was the scene of his young “driving test” in a non-mechanically propelled vehicle in the playground, and the “Licence” he got was a source of great pride.

He has experienced the great art galleries, the Uffizi in Florence, the Prado and Reina Sofia in Madrid, Vatican Museums and Sistine and the Peggy Guggenheim in Venice and the other Guggenheim in New York City.  He pondered quizzically  The Kiss by Rodin in Paris and the Calder mobiles in the Museum of Modern Art (MOMA) and was so impressed by Jasper Johns that he bought a print of his flag for his bedroom, where it still hangs.  He was even in the Louvre and in Monet’s gardens before birth as we visited Paris less than three months before he was born.  Since being born, he’s made it back to Paris several times, and had the thrill of visiting Paris Disneyland when still young enough to be bowled over by it all.

The cultural wing of our travels has made him open to Dublin events in that line, too.  He even went to see Krapp’s Last Tape with us in the Gate, probably the youngest Beckett fan there and the one who laughed loudest at the banana skin incident.   As Michael Gambon played Krapp, but also Dumbledore in Harry Potter, Jack was thrilled to shake hands with him in the bar afterwards.

Back in Ireland, as we aged, we’ve got fonder of hotel breaks and Jack has learnt the “grammar” of booking into hotels, the layout of the facilities, is ever alert for in-room mini-bars and, in recent times, the availability of wifi.  As a natural keep-fit fanatic, he really appreciates hotel pools and gyms.  Though for many years we would supervise him in such situations, he is now semi-autonomous and would be far superior to either of us in terms of fitness and sport.   In hotel gyms, with an age policy, we used to have to be on hand to prove his age (though he might be another age at reception to get him sharing the same room as us!).

Having found an ideal place to stay in Abenga, in Italy, in recent years, we paid a number of return visits and Jack got totally familiar with the layout there.  In general, he picks up directions and routines very quickly and we probably underestimate his abilities in that line sometimes.

Because of our natural inclinations, travel was going to be a big part of the shared lives of the three of us.   But having seen how it has given Jack confidence and provided an informal education in timetabling, reading, problem-solving, confidence-building, and the successful pursuit of happiness, we would recommend it as a way of boosting the lives of those with special needs who are able for it.

Author Bio

Martin, Evelyn and Jack Conneely live in Castleknock, Dublin 15 (when they are not out and about taking in the best the world has to offer).

Dr Evan Yacoub Consultant Psychiatrist

Psychiatry provision is outlined in various counties and places in Ireland for people with intellectual disability.
Introduction

Psychiatry input to people with intellectual disability in Ireland is provided mostly by the voluntary and non-statutory sector as described by the white paper A Vision for Change (Department of Health and Children 2006) alongside some statutory provision. This paper describes one such community voluntary sector service provision for County Galway. This service provides the psychiatry input to people with intellectual disability in County Galway (in addition to a fortnightly clinic to County Roscommon where there are 97 service users) in the west of Ireland. This service is responsible for the psychiatry provision to people with ID in the two counties with the exception of a small ‘closed’ statutory Health Service Executive-managed service no longer accepting new referrals in the east of County Galway which has 57 service users on its books. The psychiatry provision to this statutory service is 0-2 whole time equivalent Consultant Psychiatrist input with the remaining 0-8 WTE being provided to the voluntary sector.

County Galway

The population of County Galway in 2011 was around 175000 (CSO 2011). It has a largely rural population with 77% of people living rurally. It is the second largest county in Ireland by area (over 6000 square kilometres).

Psychiatry service

This consists of a full time administrator who also provides input to the psychology service, 2 full time non-consultant hospital doctors, and 0-8 WTE Consultant Psychiatrist input. As 0-2 WTE is separately dedicated to the aforementioned statutory service, the additional pressure on this provision is through the fortnightly clinic to the neighbouring county and any clinical issues arising from this in between clinics. The Consultant and NCHDs are part of the local general psychiatry service on call rota.

‘Core business’ issues

The service sits within a voluntary organisation which like many others in Ireland has level service agreements with the Health Service Executive. However unlike many others it delivers services to people with mild ID. A significant numbers of voluntary sector services in Ireland work with people with moderate, severe and profound ID only. People with mild ID are often seen by psychiatric community mental health teams although some fall between the gaps in service provision. In County Galway however and for historical reasons, a significant number of people with mild ID receive service provision from voluntary services specialising in working with people with ID.

THe psychiatry service also provides input to children with ID which is also fairly unusual in voluntary sector bodies in Ireland where CAMHS or specialist child ID teams may be in place. This is through a clinic jointly provided with the local developmental paediatrics service.

A Vision for Change (Department of Health and Children 2006) has a number of recommendations in this area;

RECOMMENDATION 14.6: Mental health services for people with intellectual disability should be provided by a specialist mental health of intellectual disability (MHID) team that is catchment area-based. These services should be distinct and separate from, but closely linked to, the multidisciplinary teams in intellectual disability services who provide a health and social care service for people with intellectual disability.

RECOMMENDATION 14.7: The multidisciplinary MHID teams should be provided on the basis of two per 300,000 population for adults with intellectual disability.

RECOMMENDATION 14.8: One MHID team per 300,000 population should be provided for children and adolescents with intellectual disability.

Where do referrals come from?

The psychiatry team members are employed by the largest voluntary sector provider in the county and also provide input to smaller voluntary bodies. Essentially small multi-disciplinary teams (minus psychiatry) provide input to people with ID depending on age, geographical area and level of ability. If psychiatry input is required a referral is sent in via the GP.

Whilst the psychiatry team members are not part of an MDT as such service provision can be delivered through case conferences and team meetings. Much of the time however it is through psychiatry clinics which are attended by service users, families and/or key team members as appropriate.

The psychiatry service also receives referrals from CAMHS and community mental health teams. The referrals for children are for those attending special schools in the county and accessing multi-disciplinary services attached to those schools. The service is ‘cradle to grave’ and does not refer older service users to old age psychiatry services but can discharge service users to the care of their GP if they no longer require psychiatric input.

Number of service users

Total Mild ID Moderate ID Severe ID Profound ID
413 131 152 118 8

Table 1; service users by level of disability

As can be seen from table 1, there is a wide spread of ability levels amongst service users with a significant number of people with mild ID accessing specialist provision. There will be a needs assessment under way shortly to ascertain how many people with mild ID access community mental health teams in the county.

Diagnostic categories

Diagnosis Number
ADHD 19
Anxiety Disorder 10
Mixed anxiety and depression 10
Depressive disorder 50
Bipolar affective disorder 66
Schizophrenia 25
Schizoaffective disorder 3
Autistic Spectrum Disorder 131
Cerebral Palsy 15
Down syndrome 63
Obsessive Compulsive Disorder 17

Table 2; Diagnostic category by number of service users

A number of service users will have co-morbid diagnoses, and in some cases service users will be referred with challenging behaviours in the absence of any diagnostic categories.

Inpatient admissions

The service is well connected to local psychiatric services and arranging inpatient admissions when required is straightforward. The Consultant Psychiatrist is also employed by the HSE (due to the 0-2 WTE provision to a HSE-managed service) and this ensures that admitted inpatients are under the care of their community psychiatric service when in an inpatient HSE facility.

Summary points

  1. The service covers a large geographical area.
  2. The service has children and people with mild ID on its caseload which is not always the case for voluntary sector psychiatry service provision. A Vision for Change (DOH 2006) makes a number of recommendations in this area.
  3. Ensuring that Consultant Psychiatrists providing input into the voluntary sector have HSE contracts can facilitate inpatient admissions when required.
References

Department of Health and Children (2006) A Vision for Change; Report of the expert group on mental health policy. The Stationery Office.

Central Statistics Office (2011) Census 2011 in Ireland and Northern Ireland.

Research into quality-of-life issues for people with disabilities continues to show differences—and some similarities. Colin Griffiths, Nurse Tutor, Stewart’s Hospital Services, reviews some recent articles.

Much research has been carried out into what constitutes quality of life for people with intellectual disabilities. The results of this research suggest that some issues in particular are determinants of a high quality of life for people with intellectual disability. These are:

  • the importance of good relationships with other people, particularly family and staff,
  • the possibility of genuinely living, working and enjoying leisure time in the community,
  • the chance to make effective choices in life that reflect the person’s control over their lives,
  • the opportunity to do something that is recognised as making a positive contribution to the local community,
  • the need to be treated at all times with respect. (Moss 1999, O’Brien 1987)

These are accomplishments that serve to provide a measure by which judgements can be made about a person’s quality of life. They may also act as signs that point the direction in which a person with an intellectual disability may wish his or her life to go.

Quality of Life for non-disabled people and for people with intellectual disability

Recent research carried out in Birmingham (Hensel, Rose et al.) compared the quality of life of 31 people with intellectual disability who were living in supported housing in the community, with 31 matched non-disabled people.

The authors found that in general people with intellectual disability,

  • valued their achievements rather more than the people who were not disabled,.
  • had a desire to bring about change in their personal circumstances and in effect to take some greater control of their lives,
  • were less satisfied than the non-disabled population regarding their state of health,
  • were not happy with their opportunities to spend meaningful time in the community,
  • were more satisfied than the non disabled counterparts with their material well-being.

The researchers also found that in the area of community participation, objective measures of quality of life showed that people with intellectual disability perceived their quality of life as being higher than it actually was. Although both groups lived in ordinary settings, it seems that the amount of control that people with intellectual disabilities could exercise over their lives was quite limited. This was a source of dissatisfaction for them. Furthermore it appears from the research that people with disabilities do not get a chance to engage meaningfully with the people and places in which they live in the same way that non-disabled people do.

Challenges for Service Providers

All this suggests that there are several challenges that service providers need to consider:

  • to enable people with disabilities to take greater control of their lives—this is an important issue in that if it can be brought about, it will affect all other aspects of their quality of life,
  • to facilitate people with disabilities to achieve real integration in the places and communities in which they live,
  • to value people with disabilities for who they are and what they have to contribute to society,
  • to find out why there is such a dissatisfaction with their health status.

On a positive note, the researchers found that, excepting health, both disabled and non-disabled people were very satisfied with their quality of life. In fact those with disabilities had a slightly higher satisfaction rate (78%) than the non-disabled population (74%), which perhaps suggests that service providers are in fact doing many things right.

Conclusions

Hensel et al.’s study offered some valuable insights into how satisfied people with disabilities are with the services that are provided in community. The people with intellectual disabilities who took part in the study were people who could clearly assess their lives, their happiness with those lives and articulate their views. But what of those people with more severe disabilities who are not in a position to speak of how they feel? They often live in larger campus-based accommodation and have much less access to genuine community experience. Are they satisfied with their lives? What are the issues that concern them? As yet little is known that can answer such questions; however researchers from Holland and Belgium are attempting to find out ways to define quality of life for this group of people and to develop a way of assessing it (Petry, Maes and Vlaskamp). Their project started in 2000 and will last for four years. As yet they have published no results but hopefully interesting information will soon come to light. Watch this space!