Chapter Seven - The views and experiences of advocates
Advocacy is concerned with getting one's needs, wants opinions and hopes taken seriously and acted upon. The Commission believes that advocacy is essential because it allows people to participate more fully in society by expressing their own viewpoints, by participating in management and decision making and by availing of the rights to which they are entitled (Report of the Commission on the Status of People with Disabilities, 1996, p. 106).
Historically, people with disabilities in Ireland have experienced 'a widespread exclusion' from advocacy mechanisms to represent their interests and facilitate decision making processes, particularly for those 'living within residential care and total institutions'(Birmingham, 2001, p. 4). However, this situation is perceived to have changed for the better following the publication of various policy reports, the enactment of salient legislation and the establishment of the National Disability Authority. Whilst acknowledging the many and diverse forms of advocacy and advocacy services that are possible (Weafer, 2003), the present chapter presents the views of nine advocates employed in the community and voluntary sector for people with disabilities.
A number of themes emerged during the discussion, as follows:
- The distinctive needs and abilities of people with disabilities
- The rights of people with disabilities
- The right of every person with a disability to live independently
- The importance of independent advocacy
- Barriers to people with disabilities living lives they would like in their respective communities.
7.2 The distinctive needs and abilities of people with disabilities
The advocates generally felt that people with disabilities were unique with diverse needs and abilities. Accordingly, independence means different things for different people.
Independence has first to be defined. Some might see independence as a person living on their own totally but a person can also be independent with supports that enable them to be independent. For someone with a physical disability, that might mean having a Personal Assistant 24/7. For someone with an intellectual disability, it may mean having someone available they can contact when they need, depending on the needs of the person. Independence means providing whatever supports a person with a disability needs to balance things up compared to the needs of a person without a disability living independently, to make it equal.
Depending on the distinctive needs and abilities of a person, supports and services need to be designed around the person.
7.3 The rights of people with disabilities
Unsurprisingly, perhaps, the advocates stressed the importance of people with disabilities having basic rights and choices. Unfortunately, they believe that this is not always the case. A number of advocates gave examples where people with disabilities were prevented from doing something by the actions of parents or staff. One mother, for example, 'colluded' with a GP to prevent her young adult son from passing the eye examination for the driving test because she feared for her son's safety. The advocate was annoyed that the rights of the young adult man were being interfered with without his knowledge
Parents can stop their 'children' from doing something e.g., 21 year old person with Down Syndrome continually failing the eye test for driving test because mother told doctor to fail him because she felt he wasn't capable of driving. Yet he would have to pass the same test as everyone else and better than able-bodied on drugs. Not only was mother going to GP but the GP was doing what the mother asked. He didn't know and genuinely thought every time that he was going to get it next time - he had hope - but his mother told the advocate not to interfere.
Another advocate spoke of a situation where a woman was expected to sign a contract for Personal Assistant hours, which effectively 'signed away' her right to be rescued in the event of a fire. Apart from finding it 'mind-numbing' what people are expected to do just because they are getting Personal Assistant hours, the advocate was exasperated that the person had not been advised to get legal advice before signing the contract.
Staff, which put the needs of the service ahead of the service user, were also thought to obstruct the rights of people with disabilities, even in situations where the staff are acting in ways they believe are in the best interests of their clients. This is a situation that could be resolved if staff were 'more facilitators rather than decision-makers'.
The service-users were asking for certain things e.g., bullying, but the service decided they were going to do something else and that was it. What the service users wanted didn't matter. It was what the staff had decided that would happen. That is where it lacks. A lot of staff don't know what rights of service users are.The staff that work with people with Intellectual Disability take on a parent role rather than a staff role and they act as a parent would act to a child. They need to remember that they are members of staff with a duty to the person and their rights. The parent in them means they want to protect the person but often by doing so, they are denying them their rights. That is why the staff need to understand the difference and that they don't get paid to be a parent. They get paid to be a staff member with duties and respect for service user. Duties of care means respecting their rights.
Some advocates felt that inadequate resources within a service and organisation culture can sometimes block service-users' rights, where the resources or traditions of a service dictate what happens.
It is about organisational culture, where the focus is on the service provider. There are certainly instances where staff working hours dictates what the service user gets and not what the service user needs, which is completely hideous.
They felt that the problem is that no-one questions established practices, such as the policy in some residential homes for residents to be home before 10pm at night in order to get their medication even though they are more than capable of taking their medicine themselves. While this may be due to staff timetables, it is also the case that 'duty of care' considerations can make staff fearful that they will be held responsible if the person forgets to take his/her medicine.
Social workers have a strict duty to care and often this duty of care can restrict the rights and options of the person with disabilities - a huge battle for independent advocates e.g. person making a will told by day staff he should tell social worker but he has a right to make a will - he doesn't realise this and is under duty to her and not thinking independently for himself. The whole duty of care that has built is a real barrier to independent thinking. It creates a dependency and the professionals say, how can they move into independent living? They are not able to. The don't see the potential of people sometimes because of this duty of care because they are worried about their own jobs and what it means for their responsibilities.
7.4 The right of every person with a disability to live independently
The advocates believe that everyone can live independently if the 'right supports' are in place and that everyone with a disability has a right to live independently. Independence will mean different things for different people, depending on their abilities, needs and circumstances. For some people, this will mean 24-hour care, while for others, fewer supports will be required. One advocate, who herself has a physical disability, felt that she could live independently but not alone, as she needs assistance with transport, carrying objects, shopping, and other activities that are not possible because of her disability. For her, independence is essentially a quality of how a person perceives their situation and she believes that if people need extra supports to live independently, then this is the way it should be. However, she also noted that the reality could be different from this ideal.
Independence is what the person sees it as. I was told by a manager that people don't always get what they want. They get what they need - that is the mentality. Who decides what they need? He does and the HSE, and his budget decided what he could give them.
The advocates identified a number of barriers to independent living, as follows:
- The persistence of an institutional mentality by staff and service providers, which does not give sufficient time or space for people to develop sufficient skills and to make their own choices, even if sometimes these choices are wrong. It is also perceived to be a 'power thing where staff decide where things go and what happens'. People are not supported and are effectively 'set up for failure'. Very often, the systems that are perceived to have failed people continue to keep people in a 'dependency state' by not training them to learn basic skills that would help them live independently. Most advocates felt it is unfair and unrealistic that people who have spent years in a residential setting should be expected to live independently without adequate transition. In effect, people are being set up to fail.
Allowing people to develop the skills using a developmental model to live a more independent life. Taking people at their own pace and not giving them 3 months to succeed. It is about people making choices and when people are institutionally minded, they have no concept of that, it is their choice. You might never live alone but you make your own decisions, the right of self-determination. Isn't it taking away the failing part of it as well. If a person needs the extra help, it is just that they need the extra help and getting rid of the notion that it is a failure if you can' do it alone. If you don't get an opportunity to try it, how can anyone of us learn?The confidence of someone put into a house on their own, without skills or someone there to help, would be destroyed. It is a power thing where staff decide where things go and what happens, not asking the service user, setting people up to fail, sabotaging good work. That is the reality we are working in - we have to come from another angle. Why should people change their attitudes - what is in it for them? It is about secrets. Most people have been brought up with secrets and even now when people are being moved out of a house they will tell one person and not another in case she gets upset.This thing of independent living, having been in a residential setting for a number of years, people are expected to live in a house on your own in an estate, no other option considered, and no transition at all, no half-way, no support. I am working with a man in his 50s in a nursing home and he has never made a cup of tea since he went in there and then they expect him to move into a council house! And of course he is going to fail. Their duty of care has much more entitlement than he has. How can he ever show that he can live independently. There is no half-way opportunity, there is no respite where he can go and check things out and see if he needs more support. He thinks he can do it but their duty of care says he has not a notion of doing it. Where is the middle ground to support him, empower him, encourage him? It is just not there. You are destined to fail. He was never destined to stay in the nursing home. The staff tell him that they got him a house 4 years ago and although he didn't see it, he will be told that he wouldn't take it. We worked so hard - made to feel grateful for them doing their job, doing what they are supposed to do. Totally power of the staff and the vulnerability of the people. They have the right to say that I would like to see the house and to make my own decisions where I live. No one has told them they have that right and they don't feel they have that right.
- Inadequate Personal Assistant hours, which are decided by resources rather than the needs of the person.
Personal Assistant services are critical but hours have been reduced and are almost back to the medical model. Disability equates with medical stuff and quality of life is gone e.g., Personal Assistant to help buy medicine, attend doctor etc. Who decides need of Personal Assistant, special needs assistant in school? How can it be that people who needed Personal Assistant assistance in the past no longer need the same level of assistance now that recession has happened? The Disability Act is resource led.
- Continuously training for work when the likelihood is that they will never find employment.
People with disabilities are trained and trained but there is no work at the end of the process - how disempowering is that? People get so excited - they are asked, they go on a two year course, they get an extension, they go on rehabilitation training, national learning network course, they move on to another course, and another until they run out of courses. Sometimes it works out but not often. It is so disempowering. What do people do? Train themselves until they are 55? People have a tendency to go so far and then hit day centres which are effectively waiting rooms, where they wait and knit and look at telly and then go to a nursing home. It is so disempowering. We went to College and we expected to get a job.
- A perceived lack of coordination of services for people with disabilities
There is no coordination of services. Everyone is fighting their own little patch to look for additional money or to use up money that has to be spent. Why does a person with disability need so many people involved in his/her life? At policy level, it is really wrong that our government works in such an ad hoc way from department to department.
- Lack of flexibility by employers e.g., where people are not penalised unduly for being late for work or where people are prevented from doing a FÁS course because of the minimum requirement to do 19 hours a week
- Transport can be an issue for people who don't receive a mobility allowance. This is perceived to be less of a problem for people with physical disabilities
- The disempowering culture and policies of the HSE at local level. One example mentioned by an advocate concerned a Personal Assistant to a woman who is paralysed from the neck down who is not allowed to lift up her children because it is not in her remit. Another Personal Assistant insists she is present when a woman wishes to use a commode even though she is not required. These and other instances illustrate how 'their duty of care has much more entitlement than the rights of a service user
- The absence of adequate transition between residential care and independent living
- The unequal geographical distribution of services.
When asked what they thought would promote greater independence for people with disabilities, the advocates identified a number of enablers:
- More consultation - being listened to and being heard when they speak
- Increase in Personal Assistant hours
- Choice - one size does not fit all
- Accessible information and meaningful interaction with mainstream agencies e.g., given information from County Councils etc in accessible format, that they know what choices they have out there,; and that the agencies would change the way they deal with people with disabilities - customer service departments
- Advocacy that is independent. One example related to an advocate helping an18 year old man to get housing when he was not due to become a priority on the housing list until 30. He had Intellectual Disability and 'was at the mercy of his mother who has lived a transient lifestyle'. The advocate felt it was important 'he knows his options and to have people like us to help him'.
- People with disabilities should know they have a right to live in the community.
7.5 The importance of independent advocacy
Independent advocacy is regarded as hugely important for people with disabilities, particularly those in long-term residential care. Advocates can make a difference by helping people make relatively small but nonetheless important changes, and thereby encouraging others to do something similar.
Self-advocates are learning from each other e.g., making wills. They are inspiring and learning from each other. The more we empower people, the more people successfully move out to independent living and get supports to do it. When others see it, they say 'Yeah, I want some of that'.
Thus, for the most part, they felt that they are making a difference 'on an individual basis' rather than at a cultural or systemic basis, which is where many of the problems originate.
That is all you can do. It is definitely a cultural thing. The culture within a County Council is such that all we can do is try to change individuals and highlight the individual circumstances that are going on. I cannot change the mindset of X County Council. It is not possible. Our role is to highlight the culture that allows people to be listened to or not listened to, the way information is addressed or not, addressing the power balance is very important. That can lead to change but there are so many barriers - duty of care and the reluctance of organisations to support people live independent lives.
A number of advocates gave examples of situations where they believed they had made a real difference to a person's life, including a girl who began asking her social worker questions and not the other way around as was previously the case. Another advocate referred to a young man who was perceived by the service to be 'an impossible case'. With the assistance of the advocate, he succeeded in getting accommodation and employment with little or no support from the service. The problem was that the manager thought the man was a risk because 'she had a big fat file on him' that told her he had been in trouble 30 years ago and she was unwilling to change her mind about him. The man told the advocate that it felt 'amazing to be one of ye', a normal person with a house and a job.
The advocates are not always readily accepted by service providers, with some service providers 'using them' to bring about change with difficult clients. They also noted difficulties that can arise between their role as advocates and the interests of service providers and that they are 'constantly reminding the service' that both they and the service provider are acting in the best interests of the persons and that they 'are not fighting each other'.
7.6 Barriers to people with disabilities living lives they would like in their respective communities
When asked what barriers exist that prevent people with disabilities participating more in their communities and with their peers, the advocates identified a number of factors:
- Inadequate access to information e.g., sometimes people are unaware of activities, possibly due to information being presented in ways that are not accessible to some people with disabilities
- Transport - free travel may work well for some people but not people who live in remote rural areas 'where there might be only two buses passing your home in a day and they may not be going anywhere you want to go'. Instead of a travel pass, which often requires the assistance of a Personal Assistant, some advocates recommended the provision of a voucher system for the use of taxis 'which would allow them to travel when they wanted in their own terms'. Some advocates felt there is 'an awful waste of transport facilities' in Ireland with a lot of buses parked up during the day and 'only on the road for 17 hours when the drivers are employed for 35 hours, and people at home not able to go anywhere'
- The heavy reliance of people in residential settings on the availability of staff - if there is not enough staff, they don't get out. Furthermore, even if staff bring residents out, for example, to a coffee shop, some advocates felt this is 'just the same as sitting in the canteen'. They are not socialising. It is in effect, 'a trip to the coffee shop during working hours'
- Access to local facilities can be impossible due to physical access issues and 'an organisational culture' which bars people with disabilities from using some recreational facilities
- Discrimination against people with specific disabilities. Some young men with Acquired Brain Injury (ABI), in particular, will avoid recreational facilities in order to avoid being labelled
7.7 Concluding Comments
The advocates stressed the individuality of each person with a disability and most felt that independent living should mean different things for different people, depending on their age and personal circumstances. A number of advocates gave examples of situations where they felt the rights of individuals with disabilities had been violated by family members and staff. However, they also cited instances where individuals had been assisted by advocates. One problem is that few if any people ever question established practices or policies.
The advocates identified a number of barriers to independent living including, the persistence of an institutional mentality by staff and service providers, inadequate Personal Assistant hours, the lack of employment at the end of training encouraging false expectations, a perceived lack of coordination of services for people with disabilities, a lack of flexibility shown by some employers, transport problems, the disempowering culture of HSE policies and practices at local level, and inadequate support at transition between residential care and independent living.
In addition to factors such as money, consultation, more Personal Assistant hours, and the provision of accessible information, they felt that independent advocacy was very important in enabling independent living for people with disabilities. For the most part, they felt they are making a difference on an individual rather than a systemic basis.
 The Comhairle (Amendment) Act, published in 2004, gave Comhairle legislative responsibility for the development and delivery of advocacy services to people with disabilities, and finally, the Citizens Information Act 2007 provides the legislative basis for the establishment of a Personal Advocacy Service.