Frontline of Learning Disability by The Frontline of Learning Disability

NO. 78 2010

the

frontline OF LEARNING DISABILITY

Active Support A view from Romania Human Rights

frontline NO. 78

Contents

2010

Supported by The People in Need Trust

Editor Stephen Kealy Editorial Board Owen Doody Mitchel Fleming Colin Griffiths Jim Jordan Siobhán Kane Michael McKeon Kathy O’Grady Áine O’Neilll Mary de Paor Niamh Power Fintan Sheerin Jean Spain Angelina Veiga

Published by Frontline Magazine Ltd.

People’s Pages—A day in my life Sean Mc Donnell

The role of advocacy in Inclusion Ireland by Jim Winters

Salamanca 15 years on: Inclusion—A school for all by Brian O’Donnell

On passing by by Patricia O’Brien

Letter to the Editor

Into the light by Aidan Butler

Ireland’s first longitudinal study on aging in persons with intellectual disability

Paddy goes up! by Suzanne Bennett

GALLERY: An exhibition of work by Joe Dooley from St Christopher’s Services Ballymahon

Right! Let’s stand up for ourselves by Fintan Sheeran

Production Niamh Power Printed by Opus Print ISSN 0791–1270 Published Quarterly

FEATURE: Active Support 21 Person-centred approaches to improve the quality of life of people with learning disabilities by Julie Beadle-Brown

Cover picture by Sean Mc Donnell

Frontline Magazine Ltd. is a ‘not for profit’ organisation, formed solely to publish the magazine Frontline. Copyright resides with the individual authors, but permission to reproduce any article must be obtained in writing from Frontline. Views expressed in Frontline are those of the authors themselves and not necessarily those of the editor or editorial board. Letters to the editor are welcomed. Name and address should be provided; they will be published unless otherwise requested. Articles may be submitted for possible publication in Frontline. Guidelines for authors are available from the editor. Items on meetings, conferences etc. should be submitted well in advance of events, to meet the magazine publication schedule.

Using POMS to get a better quality of life: The Outcomes Network of Ireland survey by Bob McCormack, Margaret Farrell

A reflection of a volunteer’s experience of Romania’s disability services by Marianne Griffiths

Puberty—What does it mean for me? by Liz Mc Keon

REGULARS 03 Editorial 04

News Providing services and support to people with an intellectual disability Recognising accessibility in your workplace Money counts Modern capacity legislation Standards and inspection

Reviews ACTIVITIES FOR ADULTS WITH LEARNING DISABILITIES HAVING FUN, MEETING NEEDS by

Frontline editorial address for letters, articles and other items for inclusion:

Frontline Magazine Ltd. Unit C2 The Steelworks Foley Street Dublin 1 E-mail: editor@frontline-ireland.net Website: www.frontline-ireland.net Subscriptions: secretary@frontlineireland.net

Helen Sonnet and Ann Taylor

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editorial

A Difficult Start

THIS ISSUE OF Frontline is published at a time of unprecedented challenges for the nation. The extraordinary sums of money committed to supporting the banking system mean, in practice, that less money from taxation will be available to support services. Undoubtedly for the foreseeable future all service provision, regardless of the sector, will be compromised, possibly to the extent of an irreparable fracturing of some existing services. This year service providers endeavouring to meet the challenges of the existing moratorium on staff recruitment have now, yet again, to address further constraints on their 2010 budgets. In her reflection in this issue of Frontline, Patricia O’Brien identifies the commitment given by a government representative at one of the first conferences she attended on her arrival in Ireland, to ring-fence funding. By the time of her recent return to Australia, the strands of wire on the fence have broken—if in fact they were ever there. For years, the changing needs of an aging population have been identified. Palliative care for people with an intellectual disability will place huge demands on budgets for all providers, There is a welcomed carers and, in particular, on the capacity of the HSE to provide acceptance by all an integrated and comprehensive funding package. Bureaucratic deafness and inaction in the past and at a time of with a shared vision plenty are disturbing, but in hard times they are a harbinger of and interest in worse things to come. There is a welcomed acceptance by all with a shared vision disability issues of the and interest in disability issues of the need for flexibility and need for flexibility innovation—but innovation based on the model of person and innovation centredness as expressed in Julie Beadle-Brown’s feature article. This theme is also taken up by Bob McCormack and Margaret Farrell in their article on personal outcomes measures. Sean McDonnell and Joe Dooley’s artistic skills are wonderfully expressed in their work. Sean’s superb drawing is reproduced on the cover. On page 16, there is a small sample of Joe’s work from one of his recent exhibitions. Sean in his article recounts a very active, inclusive and opportunity-filled work and recreation life. Sean’s life story is replicated by many throughout the country, fostered by their vision for themselves and the willingness and capacity of others to listen and plan for people’s individual needs. Unfortunately the continuing absence of a real vision supported by the HSE at national level means that, in practice, person centredness will only develope unevenly in the country. Ireland’s total population equates to that of a large city, but there continues to be such unevenness as to how and what services are delivered that the vulnerability of people will only further increase. Many parents ask a question of themselves: ‘what would I say if I was not afraid to speak out?’ If people do not speak out, a move back to congregate settings is a distinct possibility. Strong parent organisations of the 60s, 70s and 80s were catalysts for change—now, once again, we sorely need Parent and Friends organisations to speak up. Stephen Kealy Frontline 78 2010

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news Recognising Accessibility in your Workplace

Providing Services and Support to People with an Intellectual Disability Ability West’s Active Aging Service in Galway City opened its doors on 14 July 2008; it provides a day service to 12 service users and has been specifically tailored to meet the needs of these service users. Following a series of meetings between staff and the service users, a timetable of programmes and activities was drawn up. It was explained to the group that this was an opportunity for them, at this stage of their lives, to choose what they would like to do as part of their retirement. Some of these programmes and activities include interpersonal skills, a fit-for-life programme, art, yoga, literacy, reading, computers, advocacy and independent living skills. The main ethos of the Active Aging Service is to foster integration into the community. To this end, the group access a lot of community based activities. For example; service users have set up links with their local community active retirement group and attend their weekly meetings. They have shared many outings with this group and attend the annual Christmas lunch. In addition, the group use the NUI Galway gym on a weekly basis; they go bowling, shopping and have lunch out, and most of these activities are accessed through the use of public transport. In addition, the group links in with another community-based group, ‘The Golden Eye Club’ who meet at one of the local cinemas on a monthly basis. Ability West’s Active Aging Group has also formed strong links with another aging group in the Brothers of Charity Galway Services, whereby service users and staff attend The Aishling Centre every Thursday morning and partake in music and art with their counterparts there. A very successful art exhibition was held by the two groups in November 2009 in Ballybane Library. Some members of the group have been involved in the national photographic exhibition ‘Celebrating Aging in Persons with an Intellectual Disability’. Links were also formed when staff and service users visited the St John of God Menni Services for older persons in Dublin and it is planned to maintain this link. Our service is very fortunate to have a volunteer programme in place where volunteers come to the centre on a regular basis and take part in table top activities, playing pool or going for walks. The centre is also enhanced by student placements who enjoy getting involved in the Active Aging timetable and they are encouraged to bring their own ideas to the group. We are very fortunate that family members and friends of the group take an active interest in this service and are regular visitors to the centre. Our aim is to keep developing this service in line with service users’ needs and to empower them to live the lifestyle of their choice and to play a meaningful role in community life. Ann Beirne, Staff Member, Tirellan Active Aging Service, Ability West 4

In these times of unprecedented economic challenge, it is essential to ensure that your business is best placed to maximise its business efforts and to set itself as a class apart. It’s all easier said than done. But a new award, which recognises the importance of accessibility in the workplace, may just give your business that commercial edge and additional business opportunities. The ABLE Business Excellence Award is a joint venture between Rehab, Ireland’s leading provider of quality services to people with disabilities, and Excellence Ireland Quality Association (EIQA), the national quality organisation. The Award is the Q mark for accessibility in business. It is an acknowledgement of a firm’s commitment and its achievements as a provider of services and products to customers with disabilities, and as an employer of people who have, or at some stage in the future may acquire, a disability. According to Michael Horgan, Director of Enterprises, Rehab, the ABLE Business Excellence Award should be a key element of any firm’s business strategy in assessing where it is at now and where it needs to be in the future with regard to providing services to customers and staff with disabilities. ‘Ten per cent of our population has a disability and it makes good business sense for companies to make sure that this key section of our population is being provided for appropriately. But, making your business more accessible benefits not only this group, but all customers and staff alike.’ Irene Collins, Managing Director, EIQA, agrees. ‘The ABLE Business Excellence Award demonstrates that a company supports the highest standards available when it comes to equality and accessibility in business and that it is committed to leading the way in customer service.’ Applicants to the ABLE Business Excellence Award are assessed in three stand-alone modules—the ABLE employee, the ABLE customer and the Built Environment. This modular structure enables businesses to start the assessment process in the area that of their choice, or alternatively they may complete all three modules at once. The ABLE Employee enables businesses to show that they are committed to promoting a sense of well-being among staff and have made provisions, should any member of staff acquire a disability now or in the future. Leadership, internal communications, recruitment, induction and employee wellbeing are just some of the areas covered by this module. With the ABLE Customer module, businesses can demonstrate that they not only provide a quality customer experience, but are also developing a long-term accessible service. The module is broken down into individual criteria that include customer communications, customer service, marketing and promotion, product and service design, and customer complaints procedures. Finally, the Built Environment module enables businesses to demonstrate that they have made a provision for universal access and circulation through their premises, so that all users Frontline 78 2010

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are able to move around in safety and with ease. The list of criteria examined for this module includes universal design, signage, external steps and ramps, emergency equipment and training. Registering for an ABLE Business Excellence Award is easy. Simply register online to receive an application pack. The pack contains a self-assessment form which should be completed and returned, following on from which a member of the team will visit the business premises to conduct an on-site assessment and later results and feedback will be provided. Successful companies are presented with an ABLE Business Excellence Award which is valid for a period of two years, following which re-assessment takes place. The whole process takes approximately 12 weeks from application to assessment feedback. Any business that would like to take a longer period of time to prepare for assessment will be facilitated. You can find out more about the ABLE Business Excellence Award, and how it can be of commercial benefit to your business, by visiting www.able.ie, emailing ableawards@rehab.ie or telephoning (01) 205 7234.

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The training programme comprises a step-by-step programme guide for the facilitator, together with interactive games and exercises for the learners. Access to a computer is needed for the delivery of the programme; this reflects the need for individuals to be experienced in using electronic devices for many simple financial transactions. The website offers learners the opportunity to practice on a virtual ATM machine as well as playing games that will facilitate learning in budgeting and money management. It will focus on exploring spending habits and outline the consequences of ‘living beyond one’s means’. Video case studies will highlight financial issues relating to entitlements and employment. Organisations or individuals wishing to find out more about MoneyCounts can log onto www.moneycounts.ie or contact us at education@mabs.ie or admin.carmona@sjog.ie.

MoneyCounts is an online tool to facilitate learning of practical and sensible, money management skills supporting personal safety and independence for people with an intellectual disability or other interested groups. This project was developed with the support of BenefIT the eInclusion scheme facilitated by The Knowledge Society Division of the Department of Communications, Energy & Natural Resources.

Money Counts St John of God Carmona Services and MABS, the Money Advice and Budgeting Service, launched MoneyCounts, a new on-line money management training programme for people with intellectual disabilities on February 11th at the Stillorgan Park Hotel. The Minister for Social and Family Affairs, Mary Hanafin TD officiated at the launch. The project was developed in a partnership between Carmona Services and MABS with the support of Benefit – The eInclusion Scheme facilitated by The Knowledge Society Division of the Department of Communications, Energy and Natural Resources. The resource is web-based and is available free of charge to those wishing to use it. MoneyCounts was devised in response to an identified gap in financial literacy amongst people with intellectual disabilities and other vulnerable groups. The OECD in 2008 voiced their concern about the possible adverse effects of low levels of financial literacy in a context of increased use of financial products. Training and education in this area is aimed at facilitating learners in making effective informed decisions about their finances. The present economic situation in Ireland poses significant difficulties for people who are dependent upon Social Welfare payments and both St John of God Services and MABS work to support individuals in managing their financial affairs as effectively as possible. Money Counts forms part of an overall strategy to provide learners with the knowledge and skills required to achieve this. The content of the training programme is objective and neutral and is committed to ensuring that no particular financial institution or product is promoted in any way. Frontline 78 2010

BenefIT Benef it from Info rm ati on Tech nology Depa rtment o f C om munic ations, En er gy & Nat ur al Re sour ce s

Modern Capacity Legislation Inclusion Ireland has launched a petition calling on the government to introduce modern capacity legislation. This is a vital piece of legislation for people with an intellectual disability. March 30th marked the third anniversary of Ireland signing the UN Convention on the Rights of Persons with Disabilities. One of the central areas of the Convention is Article 12, Equal Recognition and Capacity on an equal basis with others. Ireland’s current capacity legislation dates back to the Lunacy Act of 1871. Readers are asked to sign and circulate this petition and push the government to bring in modern capacity legislation now. http://www.inclusionireland.ie/signup.asp.

Standards and Inspection Two articles appeared in The Irish Times in February, which dealt with the need for standards and inspection of disability services. Inclusion Ireland has been campaigning for independent inspection for many years. These articles can be accessed through http://www.inclusionireland.ie/Hundredsofcomplaintsoverabuseo fdisabledpeople.asp and http://www.inclusionireland.ie/DisabledAbusedandNeglected.asp 5

People’s pages

A day in my life M

y name is Sean Mc Donnell. I live in my family home in Salthill, Galway. I go with my bus driver to Active Aging five days a week. I get up around 8am and get ready for my day. I always feed my cat ‘Tiger’ before the bus comes. When I arrive at the centre, I take part in a group about relationship skills. I enjoy this because we talk about things we like to do. We also talk about our health and diet, which can be fun. One of my favourite things to do is art. I drew my rhinoceros picture for Frontline during art. I hope you like it. I find dinosaurs very interesting too and the staff help me a lot in reading and writing about them. I like to look up things on the computer about them also. I help out in the centre with jobs like dusting and sweeping the floor and I also set the table for break. I find the staff very friendly and enjoy time with my friends. I took part in advocacy training here in the Active Aging, which I enjoyed. I go for a walk most days with my friends when the weather is fine. I walk to the local hotel four days a week for my lunch. On Tuesdays I

have my lunch out in town with the rest of the group. I manage my own money. My favourite meal is lamb chops. Tommy my bus driver collects me after lunch and I go to my afternoon job of cleaning in the Mercy School. I really enjoy my job at the school. The teachers are friendly. I finish work every day at 3pm. The school is in Galway City so sometimes I go shopping in town and sometimes Tommy gives me a lift home. If I have a lot of shopping, I get a taxi home. I make loads of phonecalls to family and friends, usually in the evenings. Once a week I go to the Aisling Centre in Renmore and do art there, which is my favourite thing to do. I know a lot of the people and enjoy meeting up and having a cup of tea and a scone with them. I am very proud that my picture has been chosen for Frontline magazine and I am looking forward to seeing it in the issue. Frontline 78 2010

Advocacy

The role of advocacy in Inclusion Ireland Advocacy is a word often misunderstood. Put simply, advocacy is about speaking up. The word advocacy comes from the Latin word advocare—meaning to call. The term advocacy is also used to explain many different approaches from campaigning to lobbying. This article seeks to provide some clarity to the term advocacy as it is understood from the perspective of Inclusion Ireland. Inclusion Ireland is the largest national organisation representing the interests of people with an intellectual disability In Ireland. Inclusion Ireland has been supporting the voice of people with an intellectual disability in Ireland since 1961. We campaign for changes in laws and services for people with intellectual disabilities. We were one of the first organisations to employ a full-time advocate and are now the largest single employer of paid advocates in Ireland.

Peer advocacy—Peer advocacy is when a person with a shared experience supports another person to have their voice heard. This can be a person with an intellectual disability supporting another person with an intellectual disability. Inclusion Ireland supports people with an intellectual disability to become peer advocates and facilitates a number of peer advocacy groups. Parent advocacy—Parent advocacy is about parents acting as advocates for their children. Inclusion Ireland recognises the role of parents and provides information, advice and support to parents to be effective advocates for their children. We provide support and training to parents who participate on the parent speaking panels and HSE Consultative Committees. We also encourage disability service providers to have elected parent representatives on their boards. A growing number of parents and friends associations are also members of Inclusion Ireland.

Models of advocacy supported by Inclusion Ireland

Recent advocacy developments in Inclusion Ireland

The advocacy models endorsed by Inclusion Ireland are described below. Although each of these models of advocacy share the same basic principles, a different approach is needed to implement each one. Self-advocacy—When a person speaks up for themselves it is called self-advocacy. Self-advocacy is not something provided by Inclusion Ireland, but it is promoted and encouraged. Sometimes an individual needs more than encouragement or support to speak up—information and training are necessary. Inclusion Ireland provides this information, training and support to selfadvocates. We also facilitate self-advocacy groups and are in the process of establishing a National Platform of Self-Advocates. Representative advocacy—On other occasions where people find themselves in situations when their voice cannot be heard, an advocacy service can be provided. Inclusion Ireland calls this type of advocacy representative advocacy. Representative advocacy is independent of disability service providers and is provided by a paid advocate. Representative advocacy is issue-based. This means when the issue is addressed the advocate moves on to another advocacy case. Inclusion Ireland employs a number of representative advocates and has developed a code of practice and policies to support its advocates in their practice. Inclusion Ireland also has two representative advocacy projects funded by the Citizens Information Board (CIB). Public policy advocacy—Public policy advocacy is when organisations and advocates call for change; this has been a major part of the work of Inclusion Ireland since the 1960s. Inclusion Ireland advocates and campaigns for legislative reform; the provision of services based on need and with national standards; the closure of large residential institutions; the rights of people with disabilities, etc. Public policy advocacy is not something you provide – it is something you do. Citizen advocacy—Advocacy can also be provided in a non-paid capacity. The main difference between citizen advocacy and representative advocacy is that the relationship in citizen advocacy is long-term and the time is given freely. Inclusion Ireland has plans to develop a citizen advocacy programme in the future.

Inclusion Ireland has recently carried out research in respect of advocacy and best practice. Consequently, a number of policies and procedures have been developed to give guidance to Inclusion Ireland advocate. A code of practice has also been developed. This is based on the Code of Practice of the Irish Association of Advocates (IAA). Inclusion Ireland has also reviewed the commitments to advocacy in Making Inclusion Ireland a Reality (Inclusion Ireland Strategic Plan 2009 – 2012). Inclusion Ireland’s two CIB-funded representative advocacy projects have been independently evaluated and a report on them is expected soon. A case management system for CIBfunded advocacy projects is also in place. Inclusion Ireland has received funding from Atlantic Philanthropies, through the Person Centre, to establish a National Platform of Self-Advocates in Ireland. This will be modelled on successful platforms in other countries and is evidence of Inclusion Ireland’s commitment to the voice of people with an intellectual disability. A national convention of self-advocates which took place in Dublin last year, has formed the background to this self-advocacy initiative. Inclusion Ireland also plans to produce a guide to advocacy for its members and the wider public. We are also designing a range of advocacy and human rights training programmes designed for people with intellectual disabilities, parents and disability service providers, respectively. We also hope to have a dedicated advocacy section on our website soon. From a public policy point of view, Inclusion Ireland continues to advocate for changes to laws and improvements in services to people with intellectual disabilities. Inclusion Ireland has been vocal in respect of the need for statutory inspection in adult disability services. We continue to campaign for appropriate capacity legislation. If you would like to find out more about the advocacy work of Inclusion Ireland please contact us on 01-8559891 or visit www.inclusionireland.ie. Jim Winters, Inclusion Ireland

Introduction

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School Inclusion

Salamanca 15 years on: Inclusion—A school for all 12–13 November 2009, Grand Hotel, Malahide, Co. Dublin

his conference was organised by the National Federation of Voluntary Bodies, in partnership with The European Association of Service Providers for Persons with Disabilities (EASPD). Brian O’Donnell, Chief Executive of the National Federation of Voluntary Bodies, opened the event and said it was a great pleasure to see so many people, with a wide range of expertise, and from so many countries both in Europe and elsewhere. He emphasised that the conference itself, the study visits that had been arranged beforehand, and the chance to meet and talk around the edge of the conference, all offered a great opportunity to move things forward. He stressed that inclusive education is an issue of major importance in all countries—politically, strategically, financially and in practice. All countries needed to share ideas and work together to: ◆ Review progress since the Statement on Inclusive Education, particularly (but not exclusively) in the light of the UN Convention on the Rights of Persons with Disabilities, ◆ Find new and up-to-date ways to promote and achieve real and sustained inclusive education for all—in ‘Schools for Al’”, and ◆ Produce a new Manifesto for Change.

The Conference also marked the launch of the ‘Pathways to Inclusion’ Project. This project, funded under the Comenius programme, will be led by EASPD. It will, over three years, establish new tools for measuring and implementing inclusion and create a new network of ideas and support to make inclusion happen. Almost 300 people attended the conference, from over 20 of the member states of the Council of Europe. Participants included people with disabilities, families, policy makers, professionals and researchers from the education, social care and the medical sectors. The conference programme consisted of 5 plenary sessions and 8 parallel workshops, dealing with a multiplicity of issues relating to inclusive education.

new networks, and to agree ways to move forward. The clear fundamental message from the Conference is that INCLUSIVE EDUCATION IS THE WAY FORWARD. This is because: 1.1 Inclusion is a fundamental human right. 1.2 The UN Convention on the Rights of People with Disabilities provides a new and clear legal and moral framework for inclusion, and makes specific reference to inclusive education in Article 24. It sets the overall agenda for change. 1.3 Inclusion is not a partial right—it is lifelong and all encompassing. 1.4 It must begin from birth and be embraced and practised during school years. 1.5 Inclusive education sets the scene for adult inclusion. Better transitional planning is needed. 2 2.1

2.2

3 3.1

3.2

It is also clear that INCLUSION WORKS. The statistical information presented at the conference shows the steady if also irregular increase in the number of children with special educational needs who are now in mainstream schooling since Salamanca. Much more importantly, the inspiring personal stories during the Conference gave a “human reality” to the information. It is equally clear THERE IS A LONG WAY STILL TO GO. There are still many children who are not included in the mainstream. This may be because of lack of will or awareness. It may also reflect that more knowledge and imagination is needed on how to integrate some children with highly specialised needs. Inclusion must not be seen as a cheap option, or be tokenistic. It must be properly thought through and resourced.

THE WAY FORWARD Principles and recommendations 1.

The Conference was very successful. There were many reasons for this: the number of people who attended, the variety of roles, the range of countries they represented, the programme content and mix, and the quality of debate. It was a really important opportunity to examine the major issues concerning inclusion, to share ideas, to strengthen and create

4 4.1 4.2 4.3

INCLUSION IS A POLITICAL ISSUE Governments and authorities must give a clear commitment to inclusion. This commitment must be backed by finance and the encouragement of innovation. Those who champion inclusive education must engage with authorities, who have many conflicting demands in difficult economic times. Frontline 78 2010

School Inclusion

l-r: Mr Luk Zelderloo, Mr Franz Wolfmayr, Minister Batt O’ Keeffe, Ms Maura Nash, Mr Peter Baldwin and Mr Brian O’ Donnell

4.4

They need to be persuaded of the moral and financial cost benefit of inclusion.

Inclusive education is the RIGHT WAY FOR EVERYONE. A ‘schools for all’ approach means for ALL. It is about UNDERSTANDING, RESPECTING AND CELEBRATING DIVERSITY. The particular issues relating to the needs of children with disabilities must be seen within this wider context. The overall attitude and approach of schools to diversity, and the leadership given by the head of the education establishment, is fundamental to successful inclusion.

8. 8.1

5.1

5.2

6 6.1 6.2

6.3

7 7.1

7.2

Inclusive education is NOT A ONE SIZE FITS ALL, NARROW FORMULA. It must be PERSON CENTRED. The right education is a matter of negotiation and flexibility. It must also be FAMILY CENTRED. The role, insights and commitment of families is a vitally important part of successful inclusion. It must also be COMMUNITY FOCUSSED. Inclusive education does not only happen in schools-the “educational landscape” includes informal learning within the communities in which schools are situated. Schools need to reach out to and actively engage with the communities of which they are part. Inclusive education means CHANGING ROLES AND APPROACHES. Special schools should become, increasingly, resource centres, working in partnership with and supporting mainstream schools. The roles of teachers and other professionals should change. More emphasis is needed on working together and sharing expertise.

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Inclusive education WILL BE ACHIEVED ORGANICALLY. It needs progress to be made simultaneously at the micro level, of the individual person the mezzo level, of the whole school and surrounding community and the macro level of municipal and national authorities.

WHAT HAPPENS NEXT? What happens next depends on everyone! Following the conference, EASPD and the National Federation have produced a Manifesto on Inclusive Education. The Manifesto will be extensively disseminated to key partners, stakeholders and authorities with which they engage. EASPD will provide information on good practices, and develop new networking opportunities and partnerships, particularly via the Pathways to Inclusion Project. More information on the Pathways to Inclusion Project is available from Goedele Avau in EASPD at Goedele.avau@easpd.eu A Conference Report, together with the Manifesto, will also be sent to all those who attended the conference, so that they too can disseminate it and use it as a basis for future action. All conference documents and presentations, including a copy of the Manifest, are available on the National Federation of Voluntary Bodies website: http://www.fedvol.ie/International_Conference_on_ Inclusive_Education/Default.1216.html Brian O’Donnell, Chief Executive, National Federation of Voluntary Bodies. 9

Reflection

On passing by I

n October 2004, as the plane touched down in Dublin after 24 hours of flying from New Zealand, images of my great great grandparents, Joseph and Mary O’Brien from Killarney, came flooding in. Any thoughts of self-pity for the impending jet lag were swiftly overcome by thinking of how it must have been for them and their two children, Joseph and Kathleen, making a reverse journey to South Australia, 139 years ago in 1875 on board the barque Lady Bruce, that left from Southampton. Throughout my stay in Dublin over the last five years I have often thought of the courage and bravery of all who travelled on the ships to escape famine. In Australia they came to a rugged land of sweeping plains and made a life that my generation has greatly benefited from. In the loss of their homeland they ensured that their Irishness was passed on from generation to generation. So, it was with a personal sense of history that I accepted a position at Trinity College Dublin in 2004, to develop the National Institute for Intellectual Disability (NIID). I would like to share you some reflections on my time in Ireland, as I leave now to take up a new position as Professor of Disability Studies at the University of Sydney. On arrival in Ireland I was eager to make contact with stakeholders within the area of intellectual disabilities and I appreciated the opportunity to speak at the 2005 AGM of Inclusion Ireland, where the Disability Act (2005) was under fierce discussion. The question under scrutiny was: Would the Act entitle all people with intellectual disabilities to be adequately resourced for the outcomes of the individual assessments and aligned coordinated plans that were now to be made mandatory under its auspices? Ring-fencing of finances was the proposed answer given by the government’s representative who addressed the meeting. However, what has transpired throughout the last several years would indicate that the fence ringed shallow ground. Five years on, the momentum of such legislation as the Disability Act (2005) and the Education for Students with Special Needs Act (2004) has gone into recess as services, family members, and self-advocates cope with the government’s snipping of the fencing wire in an effort to make it stretch further. However, this is a time of extraordinary international economic downtown, whereas over the length of my stay in Ireland I do believe there has been a growing vision of how life for people with intellectual disabilities can become more personalised. I have meet people who dreamed of, and now live, in their own apartments; who dreamed of moving from campus centres and now live in group homes in the community; who dreamed of moving away from sheltered employment and now have real work for real pay; dreamed of setting up their own businesses and now run a coffee shop or a card-making venture; dreamed of having a relationship and now go on holidays together with their partner; dreamed of international travel and now have become a frequent flyer; dreamed of going to college and now have become a Trinity graduate. All these things I have celebrated with the people themselves, their family members 10

and agency staff. These people have been the pathfinders and the momentum created by their success must not be lost within the present extraordinary economic climate. This is particularly so, in view of the findings of the first stages of two studies that were conducted by the National Institute for Intellectual Disability (NIID) throughout my time in Ireland. The first study was a National survey of family members of people with intellectual disabilities. The second, entitled All we want to say, surveyed persons with intellectual disabilities across Ireland. Both projects were inclusive, that is, they involved family members and people with intellectual disabilities as co-researchers in the collection and interpretation of the survey responses. The overall message from both pieces of work was that people needed more choice and control over how support for themselves or their sons and daughters was identified and delivered. More voice—being respectfully listened to—was also expressed as a requirement for change. Put another way, they wished to be at the centre of all decision making associated with their lives, or for those they supported. Where change has come about, I would suggest that it has been combined not only with deep respectful listening but a shared vision between those with the lived experience of disability and their supporters. Over the last five years new terms have entered the rhetoric of those responsible for providing support for persons with disabilities. These include: individualised funding; direct funding; family governed services; person centred services; micro boards and optimal design of alternative services. The government, enlightened managers and staff of service agencies are joining with family and self-advocacy groups to explore the challenges associated with what these terms mean for embracing personalisation. This will continue to take courage and resilience in the present economic circumstances, but I would argue that change is not predicated

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letters to the

editor

Dear Editor

NIID students Karen Gilmartin, Jack Shanahan, Conor McCarthy, Brian Higgins, Mary Kenny and Maeve McLoughlin graduate from TCD.

on how much ground can be ring-fenced, but rather the willingness to change what is being sowed in the ground. Change is more often about paradigm-shift, such as that embraced by Trinity College Dublin, where the gates of a third-level institution have been opened to students with intellectual disabilities. The Certificate in Contemporary Living (CCL) has opened up a whole new world for people with intellectual disabilities. Students describe that they no longer feel socially isolated and see a future for themselves that previously they would have only dreamed about. The Certificate owes much to the vision of family members who wanted a different future for their sons and daughters. Ireland has begun to dream, and to act upon, a different future for people with intellectual disabilities. My five-year stay in Ireland was relatively brief, in terms of the time it takes to change policy and practice. But I see indicators suggesting that in another five years the landscape will be different. Choice will mean that people will no longer live in accommodation on the grounds of long-stay institutional settings; that people will no longer attend day programmes designed to meet the needs of the group and not the individual; that people will leave behind the mundane sheltered employment tasks, to working in mainstream settings with the support of job coaches; that people and their families will have funding options beyond that of traditional funding directed to a single service—to individually designed packages managed by themselves (or a preferred fund holder) enabling them to purchase support and resources required for their expressed need, from a multiple range of service providers. Over the last five years the NIID has run many events to raise consciousness of its mission of inclusion through education, research and advocacy. I would like to thank you for responding positively to the work of the NIID so that its vision could be initially activated on my watch. Ireland has a deep generous heart and I was truly fortunate to be among you. I will always be grateful that I had the opportunity to pass by, and to benefit so deeply from being in your midst and learning from you about my rich Irish heritage. As Joseph and Mary O’Brien dreamed of the new land that I am now returning to, I now dream of returning to the land where my dreams of an inclusive Ireland have started to come true. Until we meet again … Patricia O’Brien, previously Director, National Institute for Intellectual Disability, 2004 – 2009 Frontline 78 2010

Rehab and Excellence Ireland Quality Association (EIQA) have launched the new ABLE Business Excellence Awards the Q Mark for Accessibility, aimed at ensuring an inclusive environment for your customers and staff with disabilities. The award is a means for you to demonstrate and emphasize a commitment to meeting and servicing customers needs using a Q-Mark approach. Displaying the ABLE Business Excellence Award shows that you lead the way in customer service and demonstrate to them, and to your staff, that you have a continuing commitment to support equality and accessibility There are a number of easy steps to take: 1. Register 2. Complete the self-assessment form 3. Have an on-site assessment with a member of the QMark for Accessibility team 4. Receive results and feedback On www.able.ie, you will see there are three stand-alone modules, namely the ABLE Employee, the ABLE Customer and the Built Environment. This structure allows you to start being ABLE in the area in which you are currently best prepared or you may complete all three modules at once which ensures excellent value for money Once your assessment has been approved, your ABLE Award is valid for a two-year period. Our main goal is to drive Accessibility throughout Businesses and Associations in Ireland, currently we have 50 Businesses registered to do the Able Business Excellence Award. If Frontline are interested in participating in the award or if you are able to run a feature in any of your publications or website so we can inform your members about the award please do not hesitate to contact myself directly on 01 2057234 or by return email. To request a registration form or to find out any more information, please contact us on 01 2057234 or ableawards@rehab.ie Thank you for your time and we look forward to hearing from you. Sarah Finlay Sales & Marketing Executive Rehab Enterprises, Roslyn Park, Sandymount, Dublin 4 Tel: 01 - 2057234 Email:sarah.finlay@rehabenterprises.ie 11

Palliative Care

Into the light Introduction

Palliative care

Nurses in intellectual disabilities are said to care for persons with an intellectual disability from the cradle to the grave. Persons with an intellectual disability (ID) are now living longer and on a global scale there is an increase in the number of older people (Botsford 2000). Because of technological and medical advances during the last century, adults with ID are living longer than the previous generation of parent caregivers (Fujiura and Parish 2007). Because of the early aging experienced by some groups, and sparse numbers of the very old, the ‘older adult’ with an ID is usually deemed to be 55 years and above (Bigby 2002). They are prone to a wide range of illnesses that may eventually lead to their death.

As people with intellectual disabilities live longer they develop an array of ill health and diseases that require the same healthcare as the generic population. Palliative care for individuals with intellectual disability is steadily gaining importance as healthcare professionals encounter an increasing number of individuals from diverse care settings who present with chronic care needs. Palliative care has been labelled as a new specialism. However, an anonymous 16th century writer encapsulates the essence of palliative care practice as: To cure, occasionally; to relieve, often; to comfort, always! (National Advisory Committee on Palliative Care 2001:3). Palliative care is the dynamic and holistic care of individuals whose disease is unresponsive to healing treatment. The aim of palliative care is the attainment of best quality of life for individuals and their loved ones (Read and Elliot, 2006). Despite the importance of lessening inequalities in palliative care (National Institute for Clinical Excellence 2003), individual, specialised and practical misunderstandings continue to generate obstacles to providing appropriate palliative care services. In particular, this is the case for those not in the mainstream, for example, persons with ID (Read 2005). The recommendations offered by Corner (1999) provide an invaluable framework for fostering palliative care services. Corner’s framework addresses concerns applicable to various populations needing palliative care, including people with an ID. ◆ Review obstacles or complicated aspects of service, service delivery or explicit facets of care ◆ Methodical use of evidence-based research into practice ◆ Regular and organised review and appraisal ◆ A combined, reflective and self-analytical approach to practice and team work ◆ The centre of attention upon the needs and experiences of the recipients.

Aging in place Concepts related to aging in place recommend that stability and connection to where you live are important factors. Furthermore, the merit and make-up of supports are crucial (Bigb, 2008). Aging in place is underpinned by opportunities to stay in one’s own home, irrespective of changing care needs (Forbat 2006). ID services are gradually addressing the difficulties for aging service users without ‘shipping them out’. If a person is to age in place, other residents should be considered in the decision-making process. In addition, it is essential that the Health Service Provider (HSP) does not provide less than optimal care to the other residents during any change and transition. Concern has been expressed that persons with an ID are a vulnerable group who may not have the choice of where and with whom they live (Forbat and Wilkinson 2007). However, Jenkins (2000) states there is a concerted effort being made to empower persons with an ID. He contends that nurses in intellectual disabilities ought to develop positive attitudes which do not perpetuate the mistaken belief that it is a foregone conclusion that older people will move from independence to reliance. He also identifies the need for HSP catering for the needs of persons with an ID should be flexible. Originality and innovation are needed, underpinned by sound principles that support personal self-sufficiency. Straightforward environmental alterations can make the difference between being able to age in place or being forced to move to less supportive surroundings (McCarron and Lawlor 2003). Bigby (2002) states that there are no fixed policies or services to foster aging in place for persons with disabilities. She argues that aging in place requires staff to utilise more adaptable staffing models in order to manage age-related changes. 12

Palliative care: Affirms life and views dying as a natural process Neither rushes nor postpones death Provides release from pain and other stressful symptoms Amalgamates the psychological and spiritual domains of patient care ◆ Provides a support system to facilitate patients to live as actively as they can until death ◆ Provides a support system to assist the family to cope during the patient’s sickness and in their own loss (WHO 1990).

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Frontline 78 2010

Palliative Care

Many ID services are underpinned by the notion of assisted living, concentrating on the future and living in good health, not on death and dying Person-centred planning Person-centred planning (PCP) is the recognition that individuals have a personal picture of their favoured future. Person-centred planning stimulates staff to listen to, grasp and support the resident in actualising his or her goals. It permits staff to feel pressure between what is sought-after and what exists for the resident right now. PCP challenges inaction in the system by a planning process which takes cognisance of societal, spiritual, emotional and private issues (Medley 2006). The care passage of a person with an ID should be supported by an combination of a palliative care approach and a person-centred approach reliant on individual requirements. These needs can be subdivided into the following stages: awareness of ill health, diagnosis, treatment and prognosis (Read and Elliott 2006).

Awareness of ill health The primary detection of ill health in persons with an ID may not be straightforward, and may be compounded by the fact that some individuals may not be able to verbalise their discomfort. The DisDat tool has been developed specifically for people with an ID (Regnard et al. 2003). There is a positive correlation between knowing the person with an ID and recognising their distress. ‘Distress may be hidden, but it is never silent’ (Regnard et al. 2003:176). According to Tuffrey-Wijne (2003), communication is the greatest obstacle to successful medical assessment. In light of the communication difficulties experienced by persons with an ID, carers who know the person well are ideally positioned to note subtle changes from baseline assessment (Tuffrey-Wijne 2002). Problems with the assessment of persons with an ID may be further exacerbated when the person with an ID experiencing pain and distress is transferred from their own normal and well-known surroundings (Read and Thompson-Hill 2008). Persons with an ID may be dependent on people and rely on them to be aware of the signs and symptoms of their ill health. Professional carers need to be mindful of maintaining watchfulness, which is attentive to obvious cues as well as slight changes in baseline behaviours. Education may play a valued role in this regard (Read and Elliott 2006). This echoes Barr and Gates’ (2008) assertion that education should be an overarching requisite for staff caring for persons with an ID. In the area of ID and aging, there is an emerging change in HSP’s response to their models of care and upskilling of staff. For instance, the International Association for the Scientific Study of Intellectual Disability (IASSID) has an international working party focused on these issues (www.iassid.org). Health care professional and palliative care workers would benefit from guidance to provide for the needs of persons with an ID. All staff caring for persons with an ID can benefit from education and training in palliative and endof-life care (Botsford and King 2005). A dilemma exists for health care professionals as to whether they should formulate policies and services separately for older persons with ID, or whether the needs of this cohort are best met by generic services for older people (Jenkins 2000). Hubert and Hollins (2000) suggest that staff working in the ID sector may not be conversant with the care needs of older people, and vice versa. A European manifesto incorporates best practice in health care for persons with an ID. The manifesto recommends the following: greater access and Frontline 78 2010

availability to health services; better competencies for health professionals, educators and researchers; a multidisciplinary approach; specialist services; and proactive health promotion (Meijer et al. 2004). People with an ID experience similar challenges as the rest of the population. Unfortunately, they may have to struggle with a disabling world, and they are vulnerable. Their end-of-life needs may not be met. For that reason, the judicious introduction of multidisciplinary proficiency is vital to the palliative care of persons with an ID (Jones 2003).

Diagnosis Once a diagnosis has been established, gaining access to suitable treatment may be challenging. Trained carers working in ID services may not be completely au fait with the concept of palliative care (Read and Elliott 2006). Despite empirical evidence of high health needs, time spent by persons with an ID in a general hospital is shorter for similar procedures when compared to persons without an ID (Morgan et al. 2000). It has been implied, but remains unverified, that persons with an ID are regularly diagnosed very late in their illness. This may partly explain the low levels of access to palliative care for this cohort (Tuffrey-Wijne et al. 2008). Many ID services are underpinned by the notion of assisted living, concentrating on the future and living in good health, not on death and dying. Many HSPs have policies on how staff should respond when a client dies. But strikingly, no policiesare readily available on what staff must do if a client is given a life-threatening diagnosis. The intellectual disability sector is ill-prepared for death and dying, which diminishes its credibility of holding the mantle of care from the cradle to the grave (Todd 2004).

Treatment and prognosis Palliative care professionals may lack familiarity with persons with ID and unconsciously maintain an array of negative attitudes based on fear and the stigma allied with vulnerable groups (Read, Jackson and Cartlidge 2007). These taxing considerations may impede an important diagnosis, reduce treatment options, (Hogg and TuffreyWijne 2008) and often result in a poor prognosis. Although physicians are more likely to prescribe pain medications for palliative care compared to any other care, they still hesitate to prescribe for persons who may not be able to verbalise their pain and comfort levels, within the terms of conventional assessment tools (Botsford and King 2005). Being keenly alert to symptom management is an integral part of quality palliative care. It also enhances an individual’s dignity (Chochinov 2002). In light of the number of deaths that inevitably occur within services providing care for those with an ID, a day of remembrance would mean a great deal to relatives, peers and staff (Todd 2004).

Conclusion To facilitate aging in place, the care passage of a person with an intellectual disability should be underpinned by a combination of a palliative care approach and a person-centred planning approach dependent on individual requirements. These requirements include awareness of ill health, diagnosis, treatment and prognosis. The onus is on health professionals and Health Service Providers to provide appropriate standards of service and practice to those in their care (Jenkins and Davies 2006). Intellectual disability nurses are in a leading 13

Palliative Care role to advance good quality palliative care nursing for people with an ID, owing to the different areas in which they are employed (Jones 2003). The time is fitting for intellectual disability and palliative care organisations to join together and look forward to the future (Medley 2006). Ng and Li (2003) query whether sufficient emphasis has been placed in the training curriculum for nurses in intellectual disabilities to gain the knowledge and special ability to provide for the needs of the terminally ill and an aging intellectually disabled population. Correspondingly, Piachaud (2002) contends that more time spent with persons with an ID during medical training may enhance a doctor’s ability to relate to this cohort. Research that empowers persons with an ID themselves to narrate their stories of loss, bereavement and dying is discerning, potent and essential in establishing their palliative care needs and future service and research development (Tuffrey-Wijne and Davies 2006). If the lives of persons with an ID are to matter, then unquestionably their deaths must also be acknowledged (Todd 2003). Intellectual disability services should familiarise themselves with the location and range of palliative care services. Equally, specialist palliative care services need to be mindful of local intellectual disability services (Todd 2005). Palliative care professionals can have

a central role to play in the care of persons with an ID. However, the degree of ID may be problematic in accurately assessing the person’s symptoms. Thus, it is crucial that carers are included in the assessment. They should be asked to continue to report any behavioural changes and to assist in interpreting verbal and nonverbal communications. In order to support carers in this regard, they need to be aware of the expected signs and symptoms, and the expected path of the illness (Tuffrey-Wijne 2002). Delivering change in any area is dependent upon people taking leadership and accepting responsibility. Moreover, they must appraise and confront the way things have ‘always been done’ (Health Service Executive and Irish Hospice Foundation 2008). Generally the resources are not on hand to facilitate a person with an ID to die in their place of choice. In the longer term, we need to guarantee that such resources are available. This necessitates both a policy- and a financial commitment. In the interim, it behoves us to investigate all the factors that are relevant when considering where someone with an ID should be cared for at the end of their life. We must not always assume that ‘we know best’ (Tuffrey-Wijne 2009). Aidan Butler, Stewarts Hospital Services, Dublin 20

IRELAND’S FIRST LONGITUDINAL STUDY ON AGING IN PERSONS WITH INTELLECTUAL DISABILITY

n February 2010, the first wave of data collection for one of the most important studies ever to be undertaken in Ireland or Europe on aging in persons with intellectual disability will commence. The Intellectual Disability Supplement to The Irish Longitudinal Study on Aging (IDS-TILDA) will involve approximately 800 people with intellectual disability aged 40 years and over from across Ireland. Letters of invitation will be sent to selected participants by post throughout 2010. We would encourage everyone selected to take part in this national study, regardless of their level of intellectual disability, to ensure that the results accurately reflect and improve our understanding of all aspects of people’s lives as they grow older. The support of people with intellectual disability, families and services will be critical for the success of this study. Led by Professor Mary McCarron, School of Nursing and Midwifery, Trinity College Dublin, the IDS-TILDA is the first study of its kind in Europe, and the only study with the potential of comparing the aging of people with intellectual disability directly with the general aging population. The study findings will guide efforts to develop a comprehensive strategy on successful aging, health promotion and disease prevention, and the improvement of health and social services for older people with intellectual disability in Ireland. “It was a privilege, I was proud to tell her all about me, and how I was getting on and all the things I do in my life. I liked it when she came to visit me because I like people to visit me, I liked her company and I told her I was very happy.”. Mr. Barry Griffin (Pilot Participant), Western Care Association 2009

This was a quote from one of the participants in the recently completed pilot phase of the IDS-TILDA. The IDS-TILDA team is 14

committed to supporting the participation of all selected participants in this very important study. We need to talk to people with all levels of intellectual disability so that we can get a true picture of people’s lives as they grow older. You can take part in this study —independently, —with someone to support you, or —another person can answer questions on your behalf. Showcards have also been developed to aid communication, maximise participation and empower people with intellectual disability in this study. The following is a quote from a support worker who supported a participant to take part in the pilot phase of the IDS-TILDA:; “As a key worker I was delighted to assist a client who chose to participate in the pilot study. I am particularly delighted to see people with intellectual disability included in such a big way in this very important research”. Ms. Mary McCann - RNID, Staff Nurse Aras Attracta Services 2009 We hope that if you or someone you know is selected for the study that you will decide to take part and enjoy the experience. Together let’s work towards making Ireland the best place to grow older. If you have any queries questions about the study or require need any further information, please call the research team on (01) 896 3186 / 318701-896 3186 or email idstotilda@tcd.ie Frontline 78 2010

Innovation

Paddy goes Up!

addy Murphy is a man in his forties who loves to be in the middle of ‘the crack’ and has a great sense of fun. He uses an electric wheelchair and lives with others in a Sunbeam House residence in Rathdrum in Co. Wicklow. People who know him say he’s a bit of a daredevil, and he loves to push the boundaries. Paddy’s verbal communication is limited to a few choice words, but he makes himself understood by those who take the time. In 2008, as a result of his Personal Outcomes meeting, Paddy applied to the Jubilee Trust to join the crew of the Tall Ship Lord Nelson, which was due to dock in Dublin that summer. The Jubilee Trust is a registered charity that owns and operates the Lord Nelson and Tenacious, the only two tall ships in the world designed and built to enable people of all physical abilities to sail side-by-side as equals. After an initial assessment on board, Paddy was raring to go and was delighted when he and his key worker, Lisa Dillon, were invited to join the crew for an upcoming voyage. During the ten day voyage from Dublin to the Western Isles of Scotland, Paddy got the opportunity to see amazing sights of whales and dolphins, to make great friends with sailors from other countries and to share in the challenge of sailing a tall ship on the open sea. Some of these challenges caused more stress to Lisa that to Paddy, like being hoisted up the main mast on the first day, an important initiation task for all new crew members. Paddy loves to share the slide show from his adventure, especially the two shots of Paddy being hoisted up the mast to the Crow’s Nest! Suzanne Bennett Quality Coordinator Sunbeam House Services

Above: Paddy on board ship, and right, sailing into dock on the Western Isles of Scotland. Left: Paddy on his way, and up on the mast. Frontline 78 2010

Gallery

Gallery An exhibition of work by Joe Dooley from St Christopherâ&#x20AC;&#x2122;s Services Ballymahon. Joe has a natural talent and excels in all art mediums but favours glass and mirror painting in particular.

Frontline 78 2010

FEATURE: Active Support

Person-centred approaches to improve the quality of life of people with learning disabilities

n Frontline 74 (2009: 19-21), David Felce presented the quality of life domains and how they were important in conceptualising the purpose and nature of services for people with learning disabilities. This article will take this discussion further and explore how using person-centred approaches (Person-centred planning, person-centred active support, total communication, the SPELL framework and positive behaviour support can help services to support people to have a better quality of life (see Beadle-Brown 2006; Beadle-Brown et al. 2009; Mansell et al. 2004; Mansell et al. 2005).) Over the past 30 years in the UK, government policy and practice in service provision have seen a shift from larger congregate settings, through smaller congregate settings and small staffed homes to supported living and independent living. This shift to smaller, more individualised accommodation options has been accompanied by a shift in more person-centred approaches in the way funding is delivered and the way support is provided to people. The most recent policy guidelines from the Department of Health (2009) emphasised the need to extend these more individualised, person-centred approaches to those with the most complex needs, who often were the last to be considered for any such developments. However, these approaches are not in themselves new—some of the pioneers setting up community-based services back in the late 1970s-early 1980s based much of what they did on similar approaches. Although not called person-centred active support back then, what staff were trained to do in the early models of community living for those with complex needs in Andover and the Nimrod services in Cardiff was to facilitate engagement in activity as part of a framework to improve quality of life and to reduce challenging behaviour. It is only relatively recently (since the publication of the Mansell et al. (2005) training materials) that increasing numbers of organisations have recognised the need for person-centred approaches as part of a positive behaviour support framework. Change has taken a long time in the UK, partly because of our market economy—for every two steps taken forward in terms of individualisation and personalisation, one step is taken backwards when a larger private care service or private hospital opens to provide what is usually marketed as specialist support for people with a learning disability and mental health problems, challenging behaviour or complex health needs. Although all the old learning disability hospitals are now closed and those in our campus-based NHS provision have basically transferred to supported living in social care sector (and even our village communities are starting to change the shape of their provision), there still remain larger medicalised and institutionalised models. Their existence is usually justified because social care services are not yet as skilled as they need to be, in providing support, resulting in placement breakdown. In the UK a lot of time and money is still spent fighting crises, rather than helping people to have a good quality of life, first and foremost. Overall, however, the trend is in the right direction ideologically

Frontline 78 2010

and social conscience keeps developments moving in the direction of increasing personalisation. More and more services are implementing person-centred approaches. Now the challenge in the UK is to make it universal to service provision so that the focus is on providing a good quality of life for people, not just on meeting their physical needs and keeping them safe. As other countries in Europe and further afield shift towards community-based provision in line with the UN Convention on the Rights of Persons with Disabilities, the lessons learnt by the UK are useful. It would be wonderful to think that rather than repeating all the backward steps made by the UK, countries like Ireland, Croatia, Romania, Hungary and Poland could skip 30 years and move straight into provided good person-centred services, without having to go through the stage of providing institutional services in community settings. However, this requires that those leading the change process have a good understanding of what good person-centred support means and how it can be used to achieve a good quality of life for those living in the community. Finally, it is also important that those responsible for change can make the argument for why just settling for a quality of life that is better than in institutional services is not enough and that we should strive to help people achieve the best possible quality of life, the quality of life that we know is possible when person-centred approaches are in place. Engagement in meaningful activities and relationships is generally considered as an important means to achieving quality of life for people with learning disabilities. Engagement is about taking part in a range of tasks, activities or interactions, in an active role rather than a passive role. It is not just about special activities for people with disabilities or exciting activities such as holidays or riding lessons, but also about the everyday activities around the house, in the garden and in the community. Engagement can be taking part in the whole activity, interaction or task or just taking part for a few minutes, dipping in and out. It can be initiated by the individual or joining in as an active participant. The nature of the activities which people are supported to engage in will be determined by their age, their own preferences and agendas and the setting. So, for example, the range of activities available in a work placement or supported employment setting may be more limited and focused in nature when compared to those available around the home or in the community, where a variety of household tasks, gardening activities, leisure activities, admin activities and community-based activities such as shopping are all options. In addition, people in a home-based environment can be supported in maintaining contact with family and friends—making and sending cards, phoning, emailing, using Facebook etc. In a day service or educational setting, activities may be more structured and should naturally encourage participation, but this isn’t always the case so attention needs to be given to engagement even in these settings. 21

FEATURE: Active Support

Mansell et al. (2005) suggest that engagement is important for four main reasons: 1. We know that activity is important for our physical and mental well-being. Lack of activity can lead to both health problems and depression, boredom, etc. 2. When people are doing things and participating in activities and relationships, it is a sign that they are reasonably well adjusted to their lives and happy. If people are unhappy and maladjusted then we are likely to see challenging behaviour and lack of engagement. If activities are presented well and based on knowledge of the individual, people enjoy being engaged or at the very least start by tolerating being involved and later request to be involved. 3. We know that experience underpins development—when we try new things we learn new things and gain new skills—we develop. If we don’t try anything we cannot develop. 4. Lifestyle and quality of life is the outcome. For example, personal development is only likely to be possible if the individual participates in activities which broaden their experience and allow them to develop new skills and interests; interpersonal relations and social inclusion depend on interacting with other people, which many people need help to do, as well as being supported to be present and participating within the community—engaging in activities with other people creates an opportunity for interaction and conversation, a common interest; physical health depends on lifestyle and activity (Robertson et al, 2000); material wellbeing is improved if people are supported to find and maintain a job that pays wages and provides benefits; selfdetermination, autonomy and true choice can only be achieved if people have options to choose from, the experience with which to make the choices and an accessible method of communication with which to make their choices known—central to doing this is access to and support in trying new things and in finding ways to communicate choices; Finally, emotional well-being is both indicative of and determined by participation in activities and relationships—in our experience, when people are engaged they show that they are happy—although initially people might start by tolerating activities, over time most people move to actively seeking and enjoying engagement that is successfully facilitated. There is sometimes a decrease in challenging behaviour, especially in behaviour for which the function is stimulation or to gain attention. In addition, if people engage in activities, it is a sign that they are reasonably happy and adjusted in their setting and happy with the support being provided to them. In addition, an important consequence of engagement in age-appropriate, real activities is an increase in self-worth and self-esteem and in the respect with which individuals are viewed by others. However, whilst people with milder levels of intellectual disabilities can often engage in activities with minimal support from those who are around them, those with more severe disabilities are often dependent on staff or family carer support to get and to stay engaged. Research (Felce, de Kock and Repp 1986; Jones et al.1999; Hatton et al, 1995; Mansell 1995; Jones et al. 1999, 2001; Mansell et al. 2003) has demonstrated that the only thing that predicts level of engagement for people with learning disabilities is whether staff work in a facilitative way, providing assistance to help people take part in activities, using what was initially known as ‘active support’, but more recently as 22

‘person-centred active support’. The person-centred element of this is important. It is perfectly possible for active support to be ‘un-person-centred’—staff can decide on the activities and the way that these are presented to people or supported, with little reference to the individual’s needs and preferences. Personcentred active support is about providing enough help to enable people to participate successfully in meaningful activities and relationships, so that people gain more control over their lives, gain more independence and become more included as a valued member of their community, irrespective of degree of intellectual disability or presence of extra problems. Active support starts from what is already known about the individual and uses that to work out how to offer the opportunity to take part in activities or interactions. If people are supported to successfully engage then they will experience positive consequences—increased self-esteem as well as demonstrating to others that they are capable (often exceeding expectations of all those around them). This earns them more respect from other around them at home and in the community, improving their quality of life in terms of the domains of social inclusion, rights and emotional well-being, and increasing the likelihood that they will participate next time. We know that training and supporting staff to work in this way increases engagement in meaningful activities and relationships, increases the opportunities for offering and supporting choice and empowerment and helps to promote independence and new skills (Felce, de Kock and Repp 1986; Mansell, McGill and Emerson 2001; Mansell et al, 2002). It is particularly important and powerful for people with the most severe disabilities—the support provided by staff can compensate for the level of disability (Mansell 1994; Hatton et al.1996; Jones et al. 2001a; Smith et al. 2002) There are other person-centred approaches which should accompany person-centred active support. Firstly, active support is an important element of positive behaviour support in working with people who display challenging behaviour. For this group of people, additional support is required around strategies to manage challenging behaviour. Positive behaviour support (Carr et al. 1999; Koegel, Koegel and Dunlap 1996) is a way of working with people who present challenging behaviour, which doesn’t focus narrowly on reducing the challenging behaviour itself, but on preventative and educational approaches. It involves careful assessment of the function of the challenging behaviour, changing the situation so that triggering events are removed, teaching new skills that replace challenging behaviour, minimising natural rewards for challenging behaviour and an emphasis on improving overall lifestyle quality. Secondly, active support and engagement are also important for developing communication strategies and skills—in order to have something meaningful to communicate about, staff need to be doing things with people not for or to people. It is also important to note that communication may be non-verbal and that interacting with people through an activity is an important part of building report. It also gives people the opportunity to work out how those they are supporting communicate and indicate their preferences and choices. This, in turn, allows staff to amend how they present choices and opportunities for engagement to maximise the understanding of the individual and the possibility that they will participate. Once people know how people communicate they can share this with others who are important in the person’s life and use this information to facility interaction with others in the community. This is Frontline 78 2010

FEATURE: Active Support

sometimes referred to as total communication (Bodner-Johnson 1996; Jones 2000). Total communication is a way of supporting people with communication difficulties which involves the complementary use of signs, symbols, pictures, photographs and objects, as well as speech, to improve understanding, expression and literacy or other forms of verbal communication such as vocalisations or humming. It involves ensuring that everyone providing support uses the same methods and that all means of communication are valued and responded to by staff. Thirdly, for people with autism, knowledge of autism and empathy for how it affects the individual are essential, as well as the use of visual structure, positive approaches and expectations, a low-arousal environment and consistent support (NAS SPELL framework, cf Beadle-Brown, Roberts and Mills 2009). Active support and positive behaviour support are important to implementing positive approaches and expectations, but they need to be combined with an autism-friendly environment and empathy for the impact of autism on the specific individual. Finally, knowledge of people’s capabilities and preferences based on doing things for people is much poorer than if the knowledge is based on doing things with people, trying things out and watching their responses etc. Only when you work with people and have this basic knowledge of them, can you help them to think about their future and what they might like to do in six months’ time, or several years’ time. Therefore in order to develop dynamic and effective person-centred plans, you need person-centred action, in particular person-centred active support. In addition, in order to implement person-centred plans you need person-centred action. A plan without action and review is just a piece of paper in the filing cabinet. Action without a plan can become stale and does not promote development for the individual. Using person-centred approaches for people living in personalised services or the family home is generally relatively easy. However, implementation of person-centred approaches in service settings is not always straightforward. The bigger the service and the more institutional the setting, the more difficult it is to implement person-centred approaches. This is partly because there are many more people’s needs, preferences and agendas to take into account and partly because the environment is not conducive to people being able to take part in everyday activities. We know that training for staff is important and effective but that the training needs to be both classroom-based and on-the-job training (Jones et al. 2001). However, this is not enough. We know that management commitment is important (Mansell et al.1994; McGill and Mansell 1995) and Mansell et al.(2005) suggest that a number of other things are essential to the implementation of active support: firstly, service users need to be at the centre of staff activity, not on the periphery; secondly, staff need to see themselves as enablers rather than carers; thirdly, frontline managers need to move from administration to practice leadership; and finally, senior managers in organisations need to provide ways of dealing with lost administration, supplying training and support—but just as important, they are responsible for maintaining motivation and keeping the message straight. Staff working directly with people need to really believe that the organisation believes that user quality of life and, in particular, engagement is the most important element of their mission, that what managers want them to do is to use active support to enable people to participant in all aspects of their lives and to know that the messages they will Frontline 78 2010

receive in other training, policies, job descriptions etc are all consistent with the message that active support is the way they are expected to work. If staff believe that what is most important is filling in paperwork or keeping the place clean and tidy, then that will be their priority (Mansell and Elliot 2001). This leads to the final important element in implementing person-centred approaches such as active support—attention needs to be paid to the issue of monitoring, maintaining and improving person-centred practices. As noted above, it is important that the burden of monitoring is kept as light as possible and that measures of quality focus on what happens in the day-to-day experience of people receiving support. In the Avenues Trust, training senior managers to observe on a regular basis and frontline managers to observe and give feedback to staff on a regular basis as part of practice leadership was an important element of the implementation plan (see Beadle-brown et al. 2008). The focus of these observations is on engagement for service users and the quality of staff support. So if person-centred approaches are being successfully implemented, what would we see? Well, we would see people who are socially included in their local community, taking part in everyday activities everywhere, with other people, not just in special activities or special sessions for people with disabilities. We would see people growing in independence, learning new skills, even if their steps were very slow and small. We would see them trying new things with just enough help and support to experience success, moving at their own pace. We would see staff doing things with people not for or to them. We would also see people making real choices. They would be broadening their experiences through trying new things so that they have alternatives to choose from. We would see staff respecting the choices people make as much as possible, helping people to manage risks, not avoid risks. We would see managers modelling and giving feedback to their staff, leading their teams to work together consistently to support the people at the centre of the services. We would see senior managers recognising good practice and celebrating successes throughout the organisation and marketing their services on the bases of real achievements in people’s lives. Eventually we would see those commissioning services selecting services that have a reputation for successfully implementing person-centred approaches, creating the necessary incentives for widespread implementation of person-centred approaches. Julie Beadle-Brown, Tizard Centre References with the editor. 23

Personal Outcome Measures

Using POMS to get a better quality of life: The Outcomes Network of Ireland survey

ersonal Outcome Measures (POMs) were introduced to Ireland at a Western Care Conference in Westport in 1997, and since then a growing number of service providers have begun using these measures to develop their service.

What are Personal Outcomes? Personal Outcomes are the things that matter most to a person, and the Personal Outcome Measures cover all aspects of a person’s life—from safety and protection to best possible health, from having choices to achieving personal goals, from connecting to families to having friends and relationships, from living in the community to taking an active role in it, from upholding human rights to promoting mutual respect. The 23 personal outcomes are like a prism casting a ray of light on every aspect of the person’s life. They are called personal outcomes because each outcome is defined by the person, and not just by ‘experts’. So, for example, if the person has friends—but only sees them in the centre and wants friends around where they live, the ‘having friends’ outcome is not present for them. Not every personal outcome is equally important. What matters most to the person will change at different stages in their lives. At one time their priority may be choosing a job, or deciding where and with whom they want to live. At another time it may be an issue about being treated fairly, or developing relationships, or getting more involved in the local community. It depends on the person and what is happening at that point in their life.

with their key worker their intimate relationships, or abuse issues that occurred in the past. Some people have limited communication and this is where LAMH, PECS, Talking Mats and other communication systems are useful. Also, family members and staff who have worked closely with the person can assist, based on their observations and the person’s reactions to different situations. What matters is trying to understand the person’s preferences and choices.

Developing responsive services The connection to person-centred planning POMs are a very effective way of gathering information on the person’s current experiences and identifying their needs and priorities. Because of the wide-ranging nature of the 23 measures, every aspect of the person’s life is considered. It will be clear that, while some outcomes are fully present for the person (for example, they have chosen their work, or they have enough friends), other outcomes are not present. They don’t have enough say regarding the daily routine, or they don’t feel respected. People with disabilities generally don’t have a great quality of life. So there are likely to be lots of outcomes not fully present. The key to effective person-centred planning is to explore with the person the outcomes that are most important to them at the present time—what they want addressed urgently. These are the priorities that the Personal Outcomes Plan should address. Figure 1 shows how POMs can be integrated into personcentred planning to reflect what is most important to the person.

A person-centred approach POMs is a ‘one person at a time’ system. The person him/herself is at the centre of the process—the main source of information on what their life is like at the moment. There may be aspects of their life which they don’t want to talk about, and this is accepted without question. For example, the person may not want to discuss 24

Having a good plan will make no difference for the person, unless the plan is implemented. But implementing individual plans is hard work because people will not all want the same thing! Some people’s priority outcomes will require extra resources, or staff to work much more flexibly, or the service to be much more open to different ways of doing things. In any organisation, staff find comfort in doing the things they know they are good at—and the things they have done for years. Trying out new ways of supporting people is scary! What if it doesn’t work? Will I be blamed? Developing a responsive service requires both managers and staff to move out of their comfort zone and try new ways of supporting people to achieve the goals they want.

The challenge of achieving personal outcomes As you can see, POMs is a major challenge for service providers. If you have a large number of people living in one building, it is not an integrated setting and it is very difficult for them to take an active part in the local community. They may not have the level of privacy they want or have much choice in their daily routine. They may have lost their connections with family and relatives. Even for community-based services there are lots of challenges in moving from a focus on groups of people, to thinking about what each individual wants, and trying to respond. Even quite small settings, such as community houses, will often raise issues Frontline 78 2010

Personal Outcome Measures regarding who you want to live with, controlling personal information, and the continuity of staffing. Finally, people’s expectations increase as their life improves. When immediate goals are achieved, more challenging goals seem possible. Having lived in a community house for some time, people may want to live more independently in an apartment with a friend, or on their own.

A measure of quality of life The Personal Outcome Measures are a practical quality-of-life measure. By adding up the number of outcomes that are fully present for the person, that number—say 5—that gives an indication of the person’s quality of life. If there are five outcomes present out of the total 23, there is lots of scope for that person’s life to improve. Besides yielding an individual score, the POMs measure can also give a wider picture of how well the service provider is meeting people’s needs and priorities. By combining the personal outcome scores of all the people in the service as a whole, a clear picture emerges of the overall quality of life of the people supported by the service. By doing this every year, we can see if the service is getting better at supporting people achieve their personal outcomes. The personal outcomes relate closely to many of the standards set out in HIQA’s National Quality Standards, including Quality of Life, Protection, Rights, Person-Centred Plans and Health. In fact, personal outcomes go further than what is required by the HIQA standards in many cases, and they strengthen agency efforts to comply with them.

Survey results The 256 participants were randomly selected from almost 5000 adults supported by the 22 participating service providers, and they were broadly similar to the profile of all adults with intellectual disabilities in the national database, in terms of gender, age and level of ability. The survey results were analysed using the SPSS statistical programme. The number of personal outcomes fully present varied greatly— from two people who had no outcomes, to one person who had all 23 outcomes present. The average number of outcomes present was 9.4 outcomes. In other words, most people had fewer than half the personal outcomes fully present at the time of the survey. The personal outcomes most often fully present were: ◆ Reaching a personal goal in the past year ◆ Ongoing contact with family or guardian ◆ Adequate privacy. These were the easy-to-get personal outcomes achieved by two-inthree people. The Personal Outcomes least often present were: ◆ Choosing where and with whom you live ◆ Exercising your personal rights ◆ Choosing services such as hairdresser, dentist or doctor. These hard-to-get outcomes were achieved by one-in-five people, or fewer.

The survey Twenty-two intellectual disability services that were members of the Outcomes Network of Ireland decided to undertake a survey using the Personal Outcome Measures. They picked a random sample of 256 people with intellectual disabilities across Ireland, men and women with a mix of age groups and levels of disability. Each person was asked if they were willing to take part in the survey on condition that no identifying details were revealed (only PIN numbers were used). Where a person declined to take part, another person was randomly selected to replace them. (See the December 2009 Issue of the British Journal of Learning Disabilities for details.) The survey was coordinated by the Delivering Outcomes to People Project which had funding from the Department of Justice, Equality and Law Reform (see www.outcomestopeople.ie for full Report). To ensure the results were accurate, a number of steps were taken: ◆ A briefing day was held for the survey coordinators of the services involved; ◆ Two POMs-trained staff met with the person in every case; ◆ A POMs trainer checked the accuracy of the scores with the information gatherers; ◆ No details of the person, their unit or centre were revealed to the project. As well as discovering which outcomes were fully present, the information gatherers also found out if there was ongoing support for each outcome from the service. In other words, did the service actively support this person to have friends, or to choose where they worked, or to make full use of the facilities of their house? Active support might consist of linking the person in to social activities where they might make friends, or having an employment support service, or an independence-training programme. Frontline 78 2010

The number of personal outcomes a person achieved was influenced mainly by level of disability, and where they lived. Those with a mild or moderate intellectual disability averaged 10 outcomes, while people with a severe or profound disability averaged 7 outcomes. People who lived at home averaged 10 outcomes, while people in community houses averaged 9, and people in campus settings averaged 6 outcomes. Where someone lived was influenced somewhat by their level of ability and their age, with a higher proportion of younger, more able people living at home. Some services have been supporting people to achieve their personal outcomes for some time, and six services had gone on to achieve accreditation with the Council for Quality and Leadership. These accredited services averaged 11 outcomes present, compared to 8 outcomes present for non-accredited services. It is important to remember that these average figures are generalisations. Some older individuals with severe intellectual disability scored well above some younger individuals with mild intellectual disabilities. What influenced this was the presence of effective individual supports to achieve and maintain particular outcomes. For example, if you have access to a work experience and job placement service, you are more likely to achieve your personal outcome relating to choosing where you work. 25

Personal Outcome Measures What were people’s priorities? The survey identified what each person’s priority outcomes were. The results showed that every one of the personal outcomes was a priority for someone. Indeed, the priorities were very widely spread. The most commonly identified priorities (which were chosen by about 1-in-3 of the survey participants) were: ◆ Choosing your own personal goals ◆ Choosing where you work ◆ Participating in the local community Following Figure 1 earlier, the person’s priorities are the focus for the person’s personal outcomes plan. The plan turns priorities into specific, measureable goals which will be worked on through the year.

The stories behind the survey While the figures from the survey give us an overall picture of people’s quality of life, they do not give us the inside story of how personal outcomes are achieved with the supportive efforts of family and staff. Here are some of those stories:

Sarah: Community-building *Sarah, a young woman in her early 20’s, loves to sing and perform and this was one of her personal outcome plan goals. Her key worker knew someone involved in local variety shows and she contacted a number of local groups—the Ceili dancers, the Youthreach programme, and others—to put on a show which included drama, singing, and set dancing. Sarah, and some of her friends who were also interested, became involved. This meant getting to rehearsals, practising her routine of dance and song, advertising the event throughout her social network and family circle, and sorting out the right clothes and makeup for the night. The show took place four months later. The night went off really well and was a great success. Sarah was invited to the post-show party, and was also invited to participate in next year’s performance. The whole event created a good buzz and has the potential to be a regular annual community event. ‘People live in communities, not in services’ Liz Weintraub, Self-Advocate

Paul: Managing the risks Achieving some outcomes requires a lot of careful planning and preparation, as Paul’s story shows: *Paul is 27 and lives in a community house with five other young adults and goes to a small centre during the day. He has a serious heart condition and his lips go blue if he over-exerts or walks too far. He is on medication and is closely monitored medically. He has a very good sense of time and reminds staff when it is ‘meds time’. He is not actively involved in his own health care, though he shows a strong interest. He has a standing invitation to go away with friends in the Arch Club, but his doctor says it would not be safe for him to go away overnight or for a long weekend without a nurse who is familiar with his condition. It would be very difficult to free up the nurse. Paul’s health issues were impacting on his community involvement, his friendships, and his freedom of movement. So Paul’s staff looked at other ways of dealing with the health risks. Paul ‘wrote’ his own health care plan with help from his key worker. He developed a chart showing the colour, shape, number and timing of his tablets, along with the picture of the part of his body they were for. Every week he helped staff sort out his tablets into the right containers. He got a watch and used his mobile phone to monitor the time and was encourage to remind staff, especially 26

new staff, about the meds times. He was given information on the side effects of tablets, and what might happen to him if he forgot to take his tablet, and what to do if a tablet was forgotten. He is getting to know the manager-on-call, and knows her contact numbers. He also is learning about the emergency services and knows how to dial 999 and ask for ‘medical emergency’. He is keen to be more involved in taking his own medication, but staff still feel this can only happen with full supervision. Paul is going on an overnight away with his ARCH Club, who actually have a nurse volunteer going on the trip, who has linked with the unit staff nurse, visited the house and is familiar with Paul’s condition. Staff will be available by phone during the night away and emergency services are within easy reach of the hotel. These plans were agreed by Paul’s doctor. Paul has been supported to apply to the HSE for a motorised scooter which would help him move around the local community much easier, without having to be driven or pushed in a wheelchair. If this application is not granted, Paul’s key worker will explore with him if he would like to use his personal resources to fund this piece of equipment, having enjoyed having one on loan for six weeks.

Stephen: Moving out Choosing where and with whom you live is always a challenge, and family and service provider need to work closely together to achieve a good outcome: *Stephen is 57 years old and lived at home until his mother died. He works independently three days a week, travels alone, manages his diabetes, and is in a long-term relationship with Silvia. He lived until recently in a low-upport community home with four other men, but this has now broken down, and he lives with his sister temporarily. He wants to live alone and he has been telling us this at his planning meetings for years! Stephen’s sister and his key worker are now actively supporting him to explore his options, including renting a flat from the local authority near his sister, getting rent allowance, and accessing some service funding to pay for some flexible staff supports. He is now staying alone for periods in a vacant apartment. Stephen’s goal sets challenges for both his family and the service. Some members of the family are concerned for Stephen and want him ‘looked after’, with the security of knowing that they’re not responsible when something goes wrong. The agency may need to practise ‘active non-interference’, where they stay in close contact with Stephen and his circle of supports, keep a monitoring eye, but do not get in the way of his independence. A staff member who works in a local community house has been approached by Stephen and agreed to support him with things of his choice, paid by the hour from his funding allocation. He is looking into recruiting a housemate, someone who would share a two-bedroom apartment rent-free in exchange for specified support hours. Stephen’s story shows how service providers need to balance their concerns regarding ‘duty of care’ and health and safety policy, and family worries, against Stephen’s clear wishes and priorities. Assessing how much support Stephen needs requires a careful judgment. ‘Well-managed risk enables people to experience higher levels of independence, supported by the least intrusive safeguards’. (Patricia O’Brien 2007) (* not the person’s actual name.) Bob McCormack, Margaret Farrell References and biographical notes with the editor. Frontline 78 2010

Romania

A reflection of a volunteer’s experience of Romania’s Disability Services

traveled to Romania in September 2009 with an abundance of plans, aspirations and intentions to swap my experience and time for an insight into how this formerly troubled country was now accommodating its most vulnerable citizens. Prior to this, I had worked for eight years in community residential services and family support for people with intellectual disabilities, as well as completing some research in the area in Bolivia. The previous spring, I had made contact with the Irish NGO Health Action Overseas (HAO), and I was impressed by their commitment to working alongside government services in Romania to improve the lives of service users, most of whom had come from institutions and hospitals favoured during the communist regime. The history of the treatment of people with disabilities in Romania has been coloured by the difficult and brutal actions taken by the government prior to 1989, so I wanted to see how the situation had improved in the past 20 years—whether services had been implemented that had learned from the experiences of service development in western European countries. Under the communist regime, no social services of any kind were provided by the government—only hospitals and institutions. People with intellectual disabilities and mental health problems, as well as children, were admitted to massive institutions where living conditions were atrocious. Poverty, dramatic social change and a vast increase in population meant it was frequently impossible for families to support their children with disabilities. The Romanian regime collapsed in 1989 following the fall of the iron curtain.

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Romania joined the EU in January 2007, although standards of living remain low, particularly in rural areas. There is very little history of training in social sciences, other than psychology. Social work is a relatively new field that has only emerged since 1989 and there seem to be very few universities offering courses in social care work. Similarly intellectual disability nursing does not exist in Romania. After meeting with Health Action Overseas on several occasions, including a trip to see their services in Romania, I was given the opportunity to spend some time in a community house with eight residents, all with a moderate intellectual disability. My remit was flexible; the idea was to facilitate cross-culture learning—from Ireland to Romania and for me to learn from Romania and bring the knowledge back to Ireland. I hoped particularly to encourage community participation and independent living skills. The community house is staffed and managed by Romanian government services, with a small HAO presence of which I was part. HAO’s role is to support government services, promote and offer direction on ‘best practice’ guidelines and encourage staff to provide the highest level of quality of life to service users. The house was one of a handful of community residential settings for people with disabilities in the Eastern Romanian city of Galati. The city has a population of 300,000 people and several placement centres, most of which catered for between 40 and 60 people. Most people with intellectual disabilities (and many people living with HIV) in Galati live in such centres which have large dormitories and little privacy, although the basic needs of service users are met. Recruitment in Romania relies almost exclusively on connectivity, political affiliations and nepotism—with a high unemployment rate, it is normal for people to work outside their chosen field of study. The house (referred to as Galati House) was staffed by twenty people including cooking staff, cleaners, a social worker, an administrator, a manager and several ‘instructors’. None of the government-appointed staff had an education in nursing or social care and the manager, who was the most influential person in the building, was an administrator whose expertise was not in the area of disability. The house had been open for over two years at that time, with all its residents having come from a local institution. The clients were aged between nineteen and twenty-six and were constantly referred to as ‘children’. One of the reasons for this was the fact that the staff saw themselves in a parenting role to the young people. In what I thought of as the ‘Mama’ model, the young people who had been abandoned and traumatised in their early lives, were viewed as the adopted children of the staff, and many of whom provided them with the love and affection that they badly needed on their first move into the community. This love allowed the young people to develop considerably in the two years that the house had been open; they had learned to eat with cutlery, to express themselves and to attend to simple household jobs Staff and management found it very difficult to conceptualise the young people continuing to develop their skills, especially regarding cooking and community integration. Part of this was due to the vast improvement in living conditions between the 27

Romania placement centre the young people had come from and Galati House. Other reasons included the low expectations around people with disabilities, a lack of education around this issue, a history of hiding people away in institutions and a huge lack of training facilities for skills in the area. In fact. one colleague told me that she feels her neighbours and peers view the job she does as ‘dirty’. The authoritarian nature of the management structure of Galati House was not conducive to staff or client development. This vertical structure of management appeared to come from the top level of the civil service and was certainly promoted by the Department of Children, to which Galati House managers reported. After living in Romania for a while it started to become clear to me that this was the culture of employment, not only for the area of disability but for Romanian workplaces everywhere. Unfortunately, however, such a culture was not conducive to staff or service-user development and little staff-client advocacy.

Reflections The experience of three months in Romania affected me greatly. What I struggled most with was the lack of ambition within the culture of the house on behalf of the clients. There was little understanding around issues of self-development or sexuality, and no desire to vary the activities or push the boundaries of their daily lives. Having come from an Irish perspective, where personcentredness is starting to become the norm, the eight residents of Galati House spent 24 hours of each day together and had few if any individual goals. The culture created by the government services within the house was not conducive to making suggestions or challenge norms. The attitude was predominantly ‘if the children are safe, warm and fed, then our work here is done.’ Speaking to friends both, Romanian and non Romanian, helped me to understand that the difficult history of the country has left its population cautious and somewhat resistant to change which is (naturally) reflected in all areas of Romanian life. This helped me to understand why the service providers were risk-averse and felt that protecting the clients was the most important part of their remit. One of the most positive aspects of the time spent there was the certainty that the young people were loved by the staff who looked after them. This love certainly had a positive impact on the lives of the service users. Moving onto the next stage of personal development and teaching autonomy and independence remains problematic, however, and many of the staff were constrained by the culture of the unit, as well as their own lack of experience and education in the area of intellectual disability. Hopefully, as the

country of Romania develops, quality of life for people with disabilities will improve naturally. My own experience was hampered by the fact that I spoke very little Romanian and the lack of emphasis on socialising in the culture of Galati meant it was difficult for me to meet people. I constantly struggled with the authoritarian structure of Galati House and what I perceived as the lack of empowerment, not only for the clients but for the staff as well. Any trip outside of the building involved gaining approval from the unit manager and the psychologist. Each of these issues meant that my own remit was difficult to achieve. It simply did not suit the model fostered by the system to encourage maximum independence for its clients—there was no education around this and jobs were at risk. With these frustrations, it was important that I used the lives of Romanians as my frame of reference, instead of comparing the lives of the young people in Galati to those of service users in Dublin. The average wage in the city was €250, with rent costing up to €200. There are relatively few cafes and bars, no cinema and no public sports facilities. Poverty is a major reason for the lack of socialising, and a very real one. My remit had been purposely kept vague from the start to allow me to use my own initiative as much as possible and this had both positive and negative outcomes. At times I felt that I was wasting everybody’s time including my own, that I was trying to change something that was far far bigger than one small facility. As time went by, though, and I was accepted into the house by the staff and clients, I realised that this was in fact an advantage and that I could use my experiences in Ireland within the Romanian context, even if on a very small scale. Once I understood this I made the decision to achieve what I perceived as best for the people living in Galati House. I put time and effort into developing working relationships with some of the instructors and spent the funds that had been raised on relaxation equipment, clothes and self-starting activities that we knew would directly benefit the young people. Despite my very basic Romanian, this appeared to work very well and I was warmly welcomed by the staff who worked directly with the young people. Where possible, I included them in decisions that I could make—as a foreigner working for HAO, I had a different position that allowed me to make decisions on how to spend my time and funds that could frequently bypass the bureaucracy and normal routines. I also chose to spend time doing one-to-one activities with the clients where possible and I did manage to organise trips out, and even a visit from a magician. This worked well and although I remained a little disappointed that the clients were not reaching

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Romania

anything like their full potential, it was a much more satisfying role for me. It also allowed me to engage in a much more positive way with the staff and enjoy the learning exchange that I had hoped to gain from my time there. At all times I was aware of the fact that while my time spent in Galati was an interesting learning experience for me, it was important to be sensitive to the staff with whom I was working alongside, as this was their source of income, they understood the Romanian culture much better than I did, and that they would be there long after I left. By the time the three months came to a close I had a strong feeling of accomplishment and satisfaction. What I had actually tangibly achieved was difficult to analyse (outside of what had been purchased with the funds I had raised), but the most important part of the experience was bringing a different approach to residents and staff of the Galati House. This was certainly something that added to my personal development and I think to that of each of the people I worked with while I was there too.

Issues Arising in Romania’s Disability Sector As well as my personal experiences in Romania in 2009, I gained an insight into the future plans for services for people with intellectual disabilities in that country. My experience was somewhat biased in favour of the non-governmental organisation (NGO) sector, both foreign and Romanian, because it appeared to provide better services, be more client-focused and show more initiative around empowering its service users. While the government has expressed a commitment to de-institutionalise the disability sector, this seems to be happening at a very slow pace. A close Romanian friend who had worked for an NGO for the past 15 years explained to me that a lack of funds is not the problem. There are in fact funds available to provide social services, but her view was that the money was being spent to support institutional structures that provide employment for staff, and to maintain the existing bureaucratic system. She explained that a system of ‘maternal assistants’ exists, whereby ordinary Romanians foster children from the institutions and are paid a small fee for taking care of them. This is one part of the system that works quite well. The most difficult part of what I observed during my time in Romania was the reluctance on the part of the government services to cooperate fully with the NGO sector. Ultimately it is the government that possesses the power to provide sustainable services for people with intellectual disabilities. And yet it constantly appeared that the most client-centred services were actually being run by struggling NGOs. Time after time I heard stories of government services refusing to support or collaborate Frontline 78 2010

with the NGO sector. This was even apparent in the unit where I was based, where there were frequently difficulties in the collaboration designed for the benefit of eight young people— political agendas and a lack of understanding often stood in the way of cooperation between the two, ultimately resulting in the service users losing out. In the context of European ‘best practice’ for community integration for people with intellectual disabilities and community integration, this experience has far reaching implications. The lives of people with intellectual disabilities in Romania have undoubtledly improved somewhat in the past 20 years, but the main care providers (the government services) are still hung up on institutions, large structures (that provide jobs for people without disabilities) and specialists—mainly in physiotherapy, psychiatry and some psychology. The medical model is widely used with terms including ‘rehabilitation’ constantly being bandied about, coupled with a culture of ‘they can’t’ (referring to young people with disabilities having an IQ too low to complete certain tasks). In terms of financing, the Romanian government appeared to favour county council (its own services, often ‘mini institutions’) or Orthodox Church-run services (predominantly based on the charity model), rather than working with NGO services which tend to provide the highest quality.

Possible Solutions The repercussions of the Romanian government actions for people with disabilities (and also for orphans, at-risk children and adolescents and people with mental health difficulties) are profound. The government is doing little to educate people around these issues and there is a lack of legislation to empower people with disabilities and their families. In order to improve this, the NGO sector must work together to lobby the government and encourage stronger links between government services and their members. Government funding to sustain NGO services is a practical and costeffective way of further developing services for people with disabilities. Unless the NGO sector and the government services work together more effectively, it is unlikely that a developed social system based around the needs of the service user will be developed in Romania. Social services are not a priority for the incoming government; during the political campaigns of November 2009 issues regarding social services were rarely raised. Nonetheless, the Romanian government has already started working with NGOs on a small scale to dismantle the system of institutions that still exists around the country. Expanding such collaborations and developing small, community-based projects as an alternative to large institutions would make it possible to provide a full life for the next generation of people with disabilities in Romania. Marianne Griffiths, Volunteer, Health Action Overseas Marianne Griffiths studied at Dublin Institute of Technology where she received a BA (first class honours) in International Business and Languages (Spanish and French). She has worked with people with intellectual disabilities in a community residential setting for several years, providing care, promoting self-advocacy and encouraging the independence of the service users. Marianne also worked providing family support to children and teenagers with intellectual disabilities living at home. She completed the Msc in Global Health in Trinity College Dublin where she received the Kevany Prize for academic excellence. As part of this Master qualification Marianne lived in Bolivia and researched advocacy and empowerment for people with disabilities. She has also lived in Galati Romania.

Health

Puberty— What does it mean for me? Puberty can seem quite daunting to many young people because it brings about changes both physically (how your body looks) and emotionally (how you feel). In this article we will look at these changes that may occur and what you and others can do to help you through this change.

When will it happen? The start of puberty varies between the ages of 8 years and 11years. Girls may start earlier than boys, and some boys and girls may start puberty earlier than their friends of the same age.

How will I know that puberty has started? Puberty is responsible for many physical changes that occur to your body. Girls may notice that their breasts start to grow. This may be something that is very welcome, with thoughts of buying your first bra. For others it may be a time of anxiety, feeling unsure how to deal with this change and maybe feeling self-conscious. It is important to talk to someone like your parents or carers about this. Some people do not like to talk about personal things, but there are great books or DVDs that you might look at for information. Boys will notice that their penis and testicles have started to grow. Again this may cause concern, but these changes are normal. Again, you can talk to a family member or perhaps your key worker at your service about this concern. Both girls and boys may notice an increase in body hair— under your arms and between your legs. And a little later on, boys may start thinking about shaving the hair that starts appearing on your chin. Again this change is normal, but if you feel self-conscious about it, you should talk to others about it.

As puberty begins, there is an increase in the hormones that affect feelings and thoughts. Sometimes you might feel happy and, without knowing why, at other times you may feel sad. It might help to talk about this to someone, instead of keeping your feelings to yourself. 30

Another change that may occur because of your hormones is that your hair may become oily, you may develop acne (spots on your skin) and your body will become more sweaty than it used to. Having regular showers or baths, washing under your arms and using a deodorant will not only help to keep you clean and fresh, and it will help you to feel good about yourself in general. There are many creams and facial washes to choose from—you need to choose ones that best suit your skin type.

Girls may start their periods during this time—perhaps early on, but for some people not until some years later. You might like to talk to your mother or older sister or someone that looks after you about this before it happens, so you can be prepared for it. There are things that you will want know that will help you to manage your periods when they start. Boys will notice that the sound of their voice changes and lowers and this may be an anxious time for them. This is something that most boys will experience and it might help to talk to your parents or someone who looks after you about this.

While these changes that occur may seem a lot to you, remember that this is all part of growing up. Talk to your parents or those that look after you or, if you are uncomfortable doing that, ask to see books or DVDs that can help explain the body changes of puberty to you. Liz Mc Keon, Dublin City University liz.mckeon@dcu.ie Frontline 78 2010

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reviews

ACTIVITIES FOR ADULTS WITH LEARNING DISABILITIES: HAVING FUN, MEETING NEEDS by Helen Sonnet and Ann Taylor, 2009. Jessica Kinglsey Publishing, 116 Pentonville Road, London N1 9JB. ISBN 978 1 843 10975 4 Helen Sonnet is a teacher, writer of activity books for children and parent of a person with a disability. Ann Taylor is a leader of a comunity Gateway club. The authors have collaborated to combine their talents and expertise. They share the valuable session ideas they have used in clubs with other people working in similar settings, e.g. supported living houses or community clubs. This book is very practical in its approach, and it begins with a note on how to use it. There is a description of specific keys that are to be found at the beginning of each activity. These guide the leader/instructor regarding the level of assistance/support required for the participants, e.g. w/ch (suitable for wheelchair users), L1 (minimum assistance needed), or L3 (high level of assistance required by those engaging in the task). The book is divided into seven sections. Cooking: This section begins with some practical guidance about the things to consider before starting the session, e.g chief cook, pre-activity preparation, cookery helpers, baker. It lists 8 recipes, each of them with guidelines regarding the level of support required by the participants. The reader is advised as to whether the activity is ‘messy’, and the need to be aware of sharp or hot objects. Information is then given indicating the equipment needed, the ingredients and the recipe to complete the dish. Frontline 78 2010

Arts and Crafts: In the introduction to this section, the authors suggest that recyclable materials should be used for any art/craft session. They indicate 10 art/craft activities. Again a key indicates the level of assistance required. The necessary equipment and preparation are outlined, as is the method for completing the task. Party Games: 7 party games are outlined in the same format, explaining the preparation, equipment needed and method. The introduction in this section gives tips on the selection of activities and a sequence of party games, e.g. active games, followed by more sedentary ones. General Games: 10 General games in the same format as in the other sections. In the introduction group, activities are suggested and the need to have sufficient support staff to assist in involving participants with each activity, Special Occasions: 9 activity suggestions are given for organising special occasionsm again with preparation hints, and indications of suitability and levels of ability needed. Templates are also given in this section for cutting out or copying designs. Drama and dance: 9 activities are suggested, with preparation, equipment needed, and how to organise and run each activity. Again the level of assistance/support required is stressed. Outside Events: This section suggests 6 outside events and, as in previous sections, there are suggestions for preparation, equipment etc.The introduction suggests a pre-trip risk assessment, preferably shared with the group of those participating to anticipate any potential problems. The assessment of the potential risk is outlined, as are preventive actions. Also in this section there is an outline of how the risk can be documentated. The following is suggested: Date: Times: departure, return Anticipated Numbers: Numbers of helpers/carers: Signature: Writer& Approver: This section suggests 6 outside events and as in previous sections has preparation equipment etc. This book can be used as a valuable general resource book. I found it to be very practical, with really useful tips and hints for any carer/leader of an activity programme. Activities need to be varied and interesting, and there are excellent ideas in this book for anyone starting off in the field of activation—they would find it a very useful resource. I feel that those staff who have worked in the area for a number of years would already be familiar with the material in this book. However each activity is very structurally described and it would help in organising an activity session. I would recommend the book to anyone working with adults, either in activity centres or clubs. Esther Gilligan, Manager, Day Activity Centre, St Vincent’s Centre, Navan Road, Dublin 7.

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