Different Paths

Different Paths

One Destination

Personal Responses

to Independent Living

We are delighted to present you with our new booklet ‘Different Paths: One Destination’, a collection of work and experiences contributed by our Leaders and Personal Assistants. The ‘different paths’ represent the different lifestyle choices of Leaders and Personal Assistants. However different they may be, they all strive to achieve the same goal: Independent Living.

Independent Living is both a basic human right and a lifestyle choice. It does not mean refusing help from others or living in isolation. Instead, it means using the appropriate tools in order to live a lifestyle of one’s own choosing. The most effective way of achieving this is for a person with a disability to employ a Personal Assistant, or P.A. According to the Independent Living Movement, the person with the disability is known as a ‘Leader’ because he/she directs or ‘leads’ the work carried out by the Personal Assistant. Leaders are also seen as employers as they manage and train their P.As.

The concept of Independent Living came to Ireland during the early ‘nineties and the first Irish Centre for Independent Living (C.I.L.) opened in Dublin in 1992. Initially, C.I.L. was launched as a pilot scheme, known as the ‘INCARE’ programme, which was funded by the EU Horizon Initiative, FAS, Department of Social Welfare, Rehab Lotteries and the Department of Health. The Leaders who participated in the programme benefited enormously and began to view the service as essential to attaining a comfortable quality of life. This led to the establishment of many C.I.Ls. nationwide – including the Offaly Centre for Independent Living in 1995.

Since its establishment, Offaly Centre for Independent Living Ltd has grown and blossomed into a very successful organisation. Initially, there were only 10 Leaders and 8 P.As. but soon increasing numbers of people were expressing a wish to become involved in a project which had such tremendous potential to enhance the quality of life for people with disabilities. The excitement and enthusiasm generated is what makes OCIL Ltd so successful and we now have over 100 P.As. working an equal number of Leaders, who wish to live independent lives.

The chance to live a life of their own choosing is very important to a person with a disability. Through employing P.As, Leaders can live in their own homes, independently of their families. They can avail of educational and employment opportunities that are in line with their interests and abilities. Most significantly of all, they are not a burden on their families and friends. So, a P.A. does not just empower the Leader. He / she empowers the Leader’s family also, allowing them the freedom to pursue their own interests.

However, there is one objective that Leaders have not achieved as yet, namely, that their entitlement to a P.A. should be recognised as a basic human right. For many, not having a P.A. would mean they would have to live in an institution, where every decision, from what to eat to when to get up in the morning, would be made for them. For many Leaders, having a P.A. is the difference between living and simply existing.

Independent Living brings great benefits to both Leaders and P.As. – benefits that cannot be expressed in purely monetary terms. It is hoped that the experiences recounted in these pages will inspire whoever reads about them to become involved in promoting Independent Living and a better quality of life for people with disabilities and those who work for them.

Sarah Maye,

April ’09.

Dedication:

This booklet is dedicated to all of OCIL Ltd’s fantastic Leaders, who constantly challenge the barriers to Independent Living, and to the hardworking Personal Assistants who support and encourage our Leaders to follow their dreams.

Acknowledgements:

Sincere thanks to all of our Leaders and Personal Assistants who contributed to the booklet.

A special thank you is extended to all of the staff in the OCIL Ltd offices who offered their assistance when it was needed.

We are especially grateful to Mr. Geoff Oakley, who proofread this booklet for us.

Finally, we would like to mention the work of our Board of Directors here at OCIL Ltd, who were very supportive throughout the project. Thank you.

Roslyn Allman

As a Leader, I have availing of the use of a P.A. for nearly a year now. I use my time with my P.A. to do personal errands in town, e.g., banking, grocery shopping, doctor’s appointments, etc. I can also have my P.A. accompany me to hospital. Now that I am a point in my life where I am seeking employment, I can have my P.A. accompany me to job interviews, which is paramount in order for me to get a job in the first place. Although the time is limited, it is flexible. The hours I have with my P.A. are invaluable. Not until one needs and gets a P.A. does own realise how precious this service is.

Eibhlin Smyth

Eibhlin Smyth works as a P.A. with Offaly Centre for Independent Living Ltd. ‘I have always wanted to work with people with disabilities’, she notes, pointing out that she has had relevant experience in her personal life. Her sister Yvonne and her mother, Mary, both have disabilities and she helped her granddad after his stroke. These factors have given her many valuable insights into the role of a P.A. and she has also taken a Classroom Assistant and Social Care Course in Moate.

Eibhlin now works with Susan, a Leader from Rahan. Prior to starting this job, she received information about the Leader’s disability so that she knew what to expect. She helps her Leader in every aspect of her daily life, from housework to shopping. They have developed a very close relationship and discuss problems openly with each other – which is particularly valuable owing to the fact that her Leader wishes for her family to enjoy their own lives. ‘She has a very good personality’ Eibhlin says, ‘and this helps when working on a one-to-one basis.’ The partnership actually works both ways! Her Leader has taught Evelyn how to cook – a skill she has been able to bring into her personal life. Clearly, working together has proved a very rewarding experience for both Leader and P.A.

Keith and Helen Lamb

Our names are Keith and Helen Lamb and we are Leaders in Clara. We are very happy with the helps we have. They enable us to live at home, in our own surroundings. One of our P.As., Johnny Fitzpatrick, keeps the outdoor surroundings neat. He cuts the grass, cuts and brings in the firewood, lays the fire and takes away the ashes. Johnny does some weeding too. He also does the shopping on occasion and fetches our medications from the pharmacy. Our other P.A., Jill Monaghan, does the housework – hoovering, bed-making, washing-up, hanging clothes and fetching any necessary detergents. We are much indebted to Offaly C.I.L. Ltd.

Martina Bracken

Martina Bracken is a receptionist for Offaly Centre for Independent Living Ltd. She wanted to work with people with disabilities and it was her sister, Rita, who encouraged her to take the job. ‘I consider myself a warm, caring person’, she says, ‘so I wanted to work with people and help them achieve their potential.’ Martina is conscious of her own needs too! ‘I am very chatty,’ she continues, ‘so I needed a job where I was interacting with people.’

Before becoming a receptionist, Martina worked as a P.A. for OCIL Ltd. She has worked with quite a few Leaders and has enjoyed their different personalities. ‘Talking to Leaders and keeping them company is a big part of being a P.A.’, she notes. ‘It’s interesting to hear their experiences and to chat to them about life.’ While some experiences have been enjoyable, others were very difficult. ‘I remember one of my Leaders, may he rest in peace, who was dying of a terminal illness at the time. He never complained and he was the most caring man I have met in my life.’

Martina got the opportunity to work in the OCIL Ltd’s offices when Noirin Chalouche went on maternity leave in 2006;;. She temporarily took over the role of Leader Co-Ordinator. Mick Nestor appreciated her assistance and offered her the role of receptionist upon the opening of the new OCIL Ltd offices in Clonminch. Martina availed of a FAS computer course, two nights a week, which taught her the necessary computer skills.

Asked if she enjoys her job, Martina breaks into a huge smile. ‘I love my job’, she says. ‘I have met and chatted to so many different people. I recognise all their voices on the ‘phone.’ She adds that she was honoured to help in the production of Paddy Slattery’s play. She also became involved in PWDI (People with Disabilities in Ireland) and is now the Assistant Secretary, helping to organise meetings and information evenings for both OCIL Ltd and PWDI. ‘So you see’, she says, ‘I’m not just a pretty face!’

Martina hopes to be with OCIL Ltd for years to come, as she enjoys immense job satisfaction. ‘When you love the work you do, you do it to your full capabilities.’

Jennifer Grey

Jennifer has had benign M.S. since the age of twenty, but she is nonetheless a cheerful and optimistic lady. ‘When I was diagnosed with M.S., I felt somewhat relieved that it wasn’t cancer. I was just relieved that I wouldn’t die from M.S.’ Jennifer finds the service very valuable, as she enjoys a busy lifestyle. ‘Swimming is very important to me as it helps ease the effects of M.S., and my P.A. takes me there, as well as taking me shopping and going out for coffee’. Jennifer would love to help other people to come to term with their M.S. and the challenges they will face. She has carried out extensive research on M.S. and has even made her own booklet about it. Her advice to others with M.S. is: ‘don’t let it get to you. Don’t let it take over your life’.

Susan Thomas

Susan Thomas is a Leader from Rahan. She had a brain haemorrhage in 2004 and spent two months in Beaumont Hospital and five months in Dun Laoghaire. She lost her balance and co-ordination. As a result, Susan had to stop working and became totally dependent on her family – her husband and two sons.

‘I don’t know how I would manage without the services of OCIL Ltd.,’ says Susan. ‘I would have to live in an institution, where I wouldn’t have any control over my life. Having my P.A. allows me to live in my own home and I can direct her in what to do and the way I want it done.’

Susan has built up a good friendship with her Personal Assistants, Eibhlin Smyth and Veronica Flynn. ‘We get on really well, and I think that this helps the working relationship between us.’ Susan employs Eibhlin and Veronica to help her with every aspect of her life, including housework and cooking. Susan also enjoys potting plants. ‘Plants weren’t my thing before my P.A. came along’, she says, ‘but I love them now!’ Having two Personal Assistants allows Susan some variety in who she employs. ‘Plus,’ she adds, ‘it’s good to get different gossip from each of them!’ Having a P.A. means that Susan’s family are free to live their own lives, although they are always willing to help her when necessary.

Susan reflects on the change in her life. ‘Before the haemorrhage, I was working and taking care of two children. Now I am dependent on assistance in every aspect of my life. However, I still feel very lucky, because this service enables me to make my own choices and enjoy my life.’

Sarah Maye

Offaly Centre for Independent Living Ltd offers such a fantastic P.A. Service. I employed my first P.A. in 2003 when I moved to Dublin to study English in Trinity College. Because I only needed transport, I thought I wouldn’t need a P.A., but having Mary Dunne meant that I had assistance getting on and off trains whenever I needed to go home to Tullamore for the weekend.

Both of my P.As. have been supportive of my lifestyle choices. For example, Mary did not judge me for not wanting to stay with my family at weekends. Instead, she helped me to research my options so that I could have my own home when I left college. She always respected my privacy, but at the same time offered a listening ear when I needed it. When I left college, Mary pushed the Council to give me local authority housing in Portlaoise. Had she not done this, I would have been destined to live in a cold, damp, two-storey house in Portlaoise, living hand-to-mouth as I struggled to make ends meet. Instead, I now live in an accessible Council bungalow which has central heating and room for my own office/exercise room! A few months after I moved to Portlaoise, my fiancé moved in with me, and now I share a life with him, independent from my parents.

Mary left shortly before I moved into my house in November, 2007, and after this I employed Tracey Sage. At first it was difficult because I had just moved to Portlaoise and I wasn’t sure what direction my life was going to take. She helped me to get things organised in the Council house and took me shopping when I was unemployed. When I was offered a job with Offaly Centre for Independent Living Ltd, she brought me to work in the mornings and back home every evening after work. Offaly Centre for Independent Living Ltd offered me so much more than a P.A. service. It offered me the opportunity to make my own choices and take control of my life.

Josephine Byrne

My name is Jo and I am a Leader living in Abbeyleix. I am so glad that I learned about OCIL Ltd and it has made such a difference to my life and to my family. My public health nurse at the time put me in touch with OCIL Ltd and I have never looked back.

I was involved in a road traffic accident in December 2002 and I suffered major injuries. The most serious was a T8 and an L1 fracture to my spine. I remained in the National Spinal Unit in the Mater Hospital for six weeks and I was then transferred to the National Rehabilitation Centre in Dun Laoghaire, where I remained for five months. When I returned home from Dun Laoghaire, I found life very difficult at home with all the physical changes that I had to adapt to. I live on my own, and suddenly the everyday tasks required a lot of effort. Furthermore, as my family had grown up and had effectively left home, I knew that I needed help with lots of things.