Independent and Community Living - the views of people with disabilities families and frontline staff
Focus Group Consultation Report
Independent and Community Living - the views of people with disabilities families and frontline staff
Focus Group Consultation Report
John A. Weafer
Weafer Research Associates (July 2010)
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Acknowledgements
I would like to acknowledge and thank a number of people that made this project possible. First I would like to thank the participants in each of the focus groups for their time, views and frank opinions. Second I would like to acknowledge the assistance of different agencies and service providers in the recruitment process and, on occasion, organising transport for the participants. Third, I would like to thank the staff of the National Disability Authority for their assistance and expertise throughout the project.
John Weafer
Disclaimer
While the National Disability Authority (NDA) has commissioned and funded the Report on Independent and Community Living - the views of people with disabilities families and frontline staff, responsibility for the report (including any errors or omissions) remains with Weafer Associates, 54 River Forest View, Leixlip, County Kildare. The views and opinions contained in this report are those of the author and do not necessarily reflect the views or opinions of the NDA.
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Contents
Executive Summary
Chapter One:Introduction and Background
Chapter Two: The views and experiences of people with intellectual disabilities
Chapter Three:The views and experiences of people with physical and sensory disabilities
Chapter Four: The views and experiences of self-advocates
Chapter Five:The views and experiences of parents of children with disabilities
Chapter Six:The views and experiences of frontline staff
Chapter Seven: The views and experiences of advocates
Chapter Eight:Concluding comments and recommendations
References
Appendices
Appendix A: Information on the NDA's Public Consultation with Stakeholders
Appendix B: Topic Guide
Executive Summary
1. Background
The main aim of the study, which was commissioned by the National Disability Authority (NDA), was to elicit the views of various stakeholders on independent living, community participation, and quality of life options for people with disabilities in the Republic of Ireland. Independent living and community participation are broad concepts and for the purpose of this project, the NDA defined these concepts as:
- People with disabilities having choice and control of the support and the equipment they need
- People with disabilities being treated as an equal for housing, education, jobs and transport
- People with disabilities having choice about participation in the life of the community
- People with disabilities being integrated in the life of the community
The purpose of the Stakeholder Engagement was to hear and have documented the views of people who may not usually have their views and opinions represented in relation to issues concerning independent living and participation in the economic, social and cultural life of the community. It is envisaged that the qualitative data gathered through this process will help inform NDA policy advice regarding the independent living, community participation and the quality of life for people with disabilities. Within the parameters set by the key concepts of independent living and community participation, the participants were given scope to interpret and comment on areas they believed to be important to them. Accordingly, the themes that emerged during the analysis developed from the initial questions set by the NDA and the participants’ response to these questions.
The research was conducted by means of 15 focus groups, which were held during March 2010. Appropriate steps were put in place during the design phase of the study to ensure it was conducted in a professional and ethical manner. Further details of the background and methodology may be found in the body of the report and the accompanying appendix.
In this Executive Summary, some of the main views and experiences of the following groups that participated in the study will be summarised:
- People with Intellectual Disabilities
- People with Physical and Sensory Disabilities
- Self-advocates
- Parents of children and young adults with a disability
- Frontline staff
- Advocates
2. People with Intellectual Disabilities
This group comprised a relatively broad spectrum of people with intellectual disabilities, all of whom were over 18 years of age. While some people lived with their parents and others lived in independent accommodation., the consultation found that everyone needed some form of support to live as they would wish. The consultation also found that people with an intellectual disability liked to do many of the same things as their peers throughout Ireland. They liked to socialise with friends, go to work, cook and look after their homes, watch TV, and generally relax around the house at weekends. However, their lives are different and typically more difficult than their non-disabled peers because of their disability and their individual circumstances.
Many participants stated that they found routine tasks difficult and that they needed support with a wide range of tasks including cooking, shopping for groceries and clothes, using transport and getting around town, going on holidays, using local facilities, reading and writing, going to the cinema or pub, using technology, managing money, keeping safe and healthy, finding suitable employment, going to the doctor, crossing the road, driving a car, and homework. Transport emerged as critical for most people, with many participants stating that they had experienced difficulties in accessing and using transport.Some people said they use a taxi or employ a Personal Assistant to bring them places they would like to go rather than waiting for a special bus or using public transport, which some of them found to be infrequent or not going in a direction they needed to go.
Dealing with money was identified as another problem area for many participants, particularly when buying more than one item in a shop. A number of participants also said they disliked going out in public due to their perception of public attitudes, where they believe people ‘look at them funny’ and ‘talk down to them’. Some don’t go to pubs or shopping centres because of this perception. However, in spite of their difficulties, most participants have learnt to cope with many of these tasks through instruction provided at home or in their services. The provision of bus passes was also perceived to be very helpful by many participants.
These participants live in a variety of homes and circumstances, with most living at home and others living either in sheltered group homes or in some form of independent living. Those who currently live at home with their families were divided in their opinions of independent living. While some were quite happy to continue that arrangement for the foreseeable future, others would like to live more independent lives away from their families and staff. In all cases, participants who currently live in independent accommodation were happy with their lives and would not like to change.
Some people feared the anticipated upheaval to their lives they envisaged would follow a move to independent housing and they could see no reason why they should move and leave the support and camaraderie of group housing behind. Conversely, a number of group home residents stated that there were too many policies and regulations in place, which restrict their freedom. While they acknowledged that staff are probably concerned with their safety, they felt that they are adults and should be treated accordingly.
Everyone would like to have more friends and to socialise with them more often than at present. However, their experiences to date would suggest that there are limited opportunities outside of services for people to meet their current friends or to meet new friends. Some participants also felt unsafe when they go out at night and, as a result, while some would like to go dancing or clubbing, they rarely do. Thus, for many people, their limited social life is restricted to places and people where they feel safe; with the result that quite a number of people limit their friendships to people they meet in the services and their families at home. One group associated independent living with being able to meet their friends and family more often. Some said they would like to have a boyfriend or girlfriend but personal relationships are rare. In addition to personal safety issues, socialising is restricted by a number of factors including concerns by staff and family members for the person’s safety, transport problems, distance to friends’ homes and suitable venues, the cost of employing a Personal Assistant, shyness and a lack of confidence on the part of many people with intellectual disabilities.
Approximately half of the participants said they would like to live in independent accommodation as they believe it would allow them greater freedom to do what they want, to go where they wanted (provided it was safe), and give them their own space. In order to live independently most participants would require assistance with many of the tasks identified earlier as causing them difficulties, such as shopping, cooking, cleaning, transport and budgeting. Some also mentioned the importance of having a job where they could earn money and feel independent. Some obstacles to people living independently included a lack of support from their families and staff, resources (e.g., Personal Assistant), a lack of confidence in their abilities (e.g., budgeting), and a deficit of practical skills (e.g., cooking).
Those living independently in accommodation outside their service and families said they did not experience any problems paying their utility bills through the local Post Office. They believe that their lifestyle enables them to have a space of their own, where others have to knock to gain entry and where their belongings are safe and private. This had not been their experience in previous accommodation.
3. People with Physical and Sensory Disabilities
3.1 Difficulties experienced by people with a physical orsensory disability
The participants in these groups identified a number of areas that they found difficult in their lives as a result of their disabilities, including a perceivedlack of understanding and thoughtlessness shown by members of the public, access and design issues, service intransigence, transport problems, unequal access to information on services and entitlements, gaps in services, social isolation, and a variety of personal difficulties, such as cooking and driving. These are not new difficulties and many participants felt that the situation had improved over the years. However, they also felt that much more needs to be done by the state and the public if the problems listed above are to be overcome.
Examples of public thoughtlessness mentioned by participants included ‘nasty comments’ made by school children when they mistook a person’s lack of balance due to Acquired Brain Injury (ABI) with his being drunk; people who park in disabled parking spots; and drivers who park on public footpaths. Some participants resented the patronising attitude of some members of the public "who appear to assume that if you are in a wheelchair, you are also 'stupid'.
A number of participants mentioned instances where they were unable to access a building, use facilities, or manoeuvre though town streets due to poor design of buildings or a lack of maintenance of footpaths. Others spoke of inadequate access to information, education and transport as being critical to the lives of everyone, including people with disabilities. Some venues, such as the O2 and Croke Park, were singled out as the type of venue that should exist all over the country. While a major part of the problem in the use of buildings and facilities generally can be attributed to poor design, they felt it was also a question of lack of implementation of existing laws.
One example of service intransigence mentioned by participants included the requirement by one person to use a day centre, which was less convenient for him and further away from his house because he was located in a different region. Another highlighted the large amount of paperwork required when looking for specific entitlements. While some participants were dissatisfied with the level of services, others had experienced difficulties by not knowing how to access services they needed.
People living in rural areas were particularly impacted by transport problems, including infrequent services and difficulties getting on and off public transport. Transport was also be a problem in urban areas, with steep ramps to negotiate on some buses, lifts that don’t work at rail and Luas stations, buses that are not accessible, and large gaps between trains and platforms.
While some participants lived with their families, most participants felt that isolation is a major problem for people with disabilities, especially if they live in remote areas and depend on public transport or their Personal Assistants s to bring them places. Some participants said this can be a difficulty as their Personal Assistant can’t bring them in their cars due to insurance issues. Others noted that insurance is used by some Personal Assistants as an excuse, while others felt that some nightclubs used insurance as an excuse to restrict entry to young people with disabilities.
Most of the participants would like a relationship with someone of the opposite sex. However, this was perceived to be difficult due to their disability and the unreasonable boundaries that are placed on relationships in their service and by their parents. A personal lack of confidence and a tendency for some people with disabilities to place too much emphasis on their disability are also factors which inhibit the development of adult relationships. Few participants used social networking sites, partly out of fear and a lack of computer literacy.
Independent living was perceived by this group to be primarily about choice and control. They said that it is about knowing what you want and having sufficient support and resources to ensure it happens. It is not always about doing things for yourself and it often entails considerable hassle but it is perceived to be a more normal life.
Some obstacles to independent living identified by this group included an unwillingness on their part to move outside comfort zones, their desire for privacy, a lack of personal confidence, a lack of parental encouragement or support and practical difficulties, such as looking for an apartment and completing forms. A number of participants in one group lived at home with their parents and were quite happy doing so even though they were anxious about the future when their parents would no longer be able to care for them. These individuals in their 30s lacked confidence in their abilities and preferred to depend on the support of their parents.
The consultation indicated that independent living can mean different things for people at different stages of their lives. Thus, while a person with a disability may not need assistance or choose not to use services when they are younger, their needs and circumstances may change when they get older. However, they felt that the system that exists in Ireland makes it difficult for people to ‘join’ the system later in life.
When asked what would help them live more independent and better lives, participants mentioned a number of things including training in how to do things for themselves, such as cooking; opportunities for them to have more input into their lives; more Personal Assistant hours and a more flexible PA service; equipment, such as hoists and wheelchairs; grants to adapt their apartments; accessible places and transport; to be treated as normal people; and more control over their funds including disability payments.
4. Self-advocates
This group of self-advocates liked participating in the various activities organised by their service and also doing other ‘normal’ activities, such as watching TV, surfing the web, going out for coffee, shopping, listening to music and watching sport.
Each of the participants had experienced difficulties that were directly related to his/her disabilities. Two people have mobility problems and consequently experience difficulties walking on footpaths that are poorly maintained and taking buses. Those in wheelchairs also experience mobility problems including using footpaths and the use of public transport.
Each of the participants would like to socialise with people his/her own age and to do things that ‘normal people do’ and without people ‘looking at you’. However, the reality is that they believe that they have few opportunities to socialise because of their need to have someone with them at all times and their problems with mobility and in accessing some buildings. The young women expressed a strong interest in meeting other young women to ‘go shopping, go to cinema, go out to lunch, meet up at night time if that is possible, hang out and have fun, chat, and do make-up’. However, they generally don’t meet anyone their own age outside the day centre. When asked what is preventing them meeting more people now, one participant said she was not allowed out on her own in case anything happened to her. While each of the participants would like to have a boyfriend or girlfriend, the two girls were of the opinion that this would never happen for them because of their disability. When asked what, if anything, would help them to meet more people their own age, they said that more Personal Assistant hours would help, employment in a ‘normal’ job, and families and staff that were less protective.