Chapter Six - The views and experiences of frontline staff
The results presented in this chapter are based on discussions from two focus groups held in Galway and Tullamore, respectively. The staff that participated in the focus groups comprised a range of professionals including, speech and language therapists, social workers, community coordinators, administration, occupational therapists, transport, public health nurses, personal assistants, and intellectual disability services. A number of salient themes were identified by staff, which will be discussed in more detail in the following pages.
- The rights of people with disabilities
- The challenge of working with people with disabilities
- Service Provision
- Independent Living.
6.2 The rights of people with disabilities
The topic of rights for people with disabilities was spontaneously mentioned by a number of staff when they were asked if there was anything they felt was important to the lives of people with disabilities. One participant explained why she had raised the subject:
Two things hit me over the past few weeks, which have to do with rights. One was in a newspaper where a mother was complaining about how her daughter with Down Syndrome could not buy a house because legally she is excluded by Irish law in signing a legal contract because of her Down Syndrome. Another legal thing that came up in my work was where a person was trying to organise money to go on a holiday and he was a ward of court and he was told no, he should be living on the money he has and that an x amount of money, which was enormous, should be kept aside for his funeral.
Another participant said that while her service had gone someway towards integrating people into the community, she felt that the persistence of historical practices suggests it has still someway to go before service users are treated fully as individuals with rights and choices.
We have houses in the community and yet the organisation still dictates they have fish on Friday. I know that is very incidental and fish on Friday is fine with service users but we are asking these guys to make important decisions where they want to live, who they want to live with, what services they want to access and we don't allow them to choose something as basic as their menu........... We say their voices need to be heard but how can we ask them really important questions and yet we take the smallest decisions for granted. It is the organisation saying, it is Friday, so it is fish for tea!
A similar point was made by another participant who felt that services 'need to get much better at meeting people's authentic needs' and to address the cultures and practices in organisations. There are 'ingrained ways of doing things' in many organisations and individual staff are naturally reluctant to take risks without the support of families or a higher authority that would indemnify them for pushing out the boundaries on behalf of the person with a disability.
We focus on the needs of the person but unless we change how we do things, and change in vocabulary to bring all the focus around the person, it won't happen. All us stakeholders have vested interests. There are a lot of legacy issues around that which we have to address. The key for me is that each individual's choices are actioned and respected. We put in all the supports and we walk with people and try to make sure we advocate with them. That brings you different places - they go their own places and you travel with them.
Most participants felt that things had improved over the years and that 'a huge amount of learning had taken place in the past number of years around bad practice' but that more needed to be done if the service-user is to become 'centre-stage'. One participant noted how difficult it can be in getting feedback from service users with severe intellectual disability because 'people with intellectual disability never complain and everything is a bonus for them'. Another person felt it is important that everyone is listened to and not only people with challenging behaviour who tend to 'make the most noise'. For some members of this group, communication is key: communication, which is creative and prepared to listen to answers that might not be expected.
It keeps coming back to communication and the need to be creative around that. Asking someone what they want when they might not have the skills or support to answer the questions. That is where advocacy comes in and it is so important they come from outside of us. Communication and a willingness to listen to answers we might not be expecting. We might like to look like a modern service, with all individualised services but we still may not be listening to what the person wants. On paper, everything looks good.
A number of staff praised the role of independent advocates in helping service users access their rights and challenging the traditional practices of services.
People need independent support, no matter how good the organisations are or are not, there is always paternalistic, we know best attitude. It is always there and we won't move forward unless change happens in this area.One participant felt it was about 'clients' potential in every part of their lives 'whether it is getting up in the morning, or making decisions, or going to work or getting out into the community. A lot of clients, because they come within our narrow expectations of their occupational experience, if only we could allow them a vision for themselves, that would be the most wonderful thing'.
A number of staff felt that parental consent can sometimes restrict the rights of an individual, even when staff feel that the parent is preventing their 'child' from doing something they are well capable of doing.
Sometimes we try to encourage independent living and parents say no; they think they are not ready to go down town shopping alone and not to allow them. You can only go so far and it can be frustrating when you have to stop people doing what you feel they can do, that they are quite capable and independent. Within our remit we have to give parents the final say - it is parental consent. You could have a 25-year old who we know is capable of going from A to B on their own but parents insist they have someone with them at all times. They are treating a person with Intellectual Disability as a child rather than an adult. But we have no choice. They are not allowing them to live - too protected.
Some staff believe that parents are afraid of their child becoming too independent because this increases the likelihood of their child moving out of the service to live in the community where parents believe there are less services. Some parents fear that their children will end up coming home to be minded by them when they will be too old to be carers.
They could be in an institution and looked after very well and then they are moved into the community and the services could collapse around them and their biggest fear is that they will, they are looking at what happened with the psychiatric services. A lot of psychiatric hospitals have closed down and put a lot of patients into the community and taken away all the services from them. They were left to fend for themselves. I read recently that people with very mild ID are sleeping homeless in Dublin because they have reached 18 and their services have stopped. That is a genuine fear.
One area in which parental consent is often required is that of personal relationships, particularly when it relates to people with severe intellectual disability that are under 24-hour care. The dilemma for staff is whether or not to allow the relationship to develop and if the people have the capacity to make their own decisions in this important area of their lives. They felt that the decision is usually made in line with the wishes of parents and service guidelines rather than the wishes of the people most directly concerned.
It is on our terms that they have these relationships. The people with disabilities don't have a problem with it but us as carers have problems as to what way a relationship should develop. Personally I would be a bit uncomfortable. There are guidelines but no-one wants to be the first to consent to two people going to bed together or going off for a weekend together. I wouldn't like to be the one to make that decision. That is a difficulty for people with disability. We would look to a parent to make the decision but we all feel that everyone has a right to what I have a right to. That is fine for me because I would make the decision about my own life. But if there is someone in my care who says they have invited someone back to my community house and they are going to stay overnight, and they are fine about that but I might not be fine about it because they might be consequences. How do I know one person is not taking advantage of the other?
6.3 The challenge of working with people with disabilities
Most of the participants identified at least one challenge or frustration they faced in working with people with disabilities, including the following:
- Cuts in funding are perceived to have adversely impacted on a wide range of areas, including transport, and the provision of basic supplies, such as wipes and pads. Some participants said that many of these cuts are avoidable if the HSE spent money more efficiently and smarter. In the case of transport, for example, some participants felt that significant amounts of money were being spent on taxis when a cheaper bus service was available.
- The amount of money spent by HSE on taxis is significantly higher than total cost of running the rural transport programme. You could have a taxi running from Killarney to Cork with 4 passengers, and the taxi is paid separately for each of those four because it is paid by PRSI numbers. We could all work better together. We have IWA, HSE, Enable Ireland, and Rural Transport but it is very difficult to get everyone to sit down and work together. If we worked together the service could be provided more efficiently and better. Our buses and the IWA bus could be going in the same direction but no communication between us. There is some crossover but not enough.
- Some participants said that they believed that a substantial number of people were 'misplaced' in psychiatric hospitals who are not receiving the specialist care they need from staff who support people with intellectual disabilities.
- They felt that changing mindsets and traditional ways of doing things is always challenging. Money tends to get caught up in the system, which in many cases is the group home. It can be very challenging to find creative ways to release funds from an existing system to develop another system, which meets the needs of service users.
- The fear of being held accountability has led staff to be very cautious about giving people any autonomy. Protocols on how staff should act in particular circumstances increasingly mean that staff will do what is best for the service and not necessarily what is best for the person: 'Who is ultimately responsible if the person thinks they are ok and something happens during the night?
- Some staff believe that management are increasingly out of touch with the ordinary worker in the HSE, resulting in a general waste of resources and a lack of accountability.
- The way parents are told that their child has an intellectual disability does not give them any hope. One person felt that too many paediatricians are advising parents to put their children into an institution and to get on with their lives.
- Staff have to learn how to respect the privacy of service users who are living independently. It can be very challenging for staff to knock on doors before entering or not checking up on service users: 'it can take time to get used to the idea that I need to be granted access to their home'.
6.4 Service Provision
Overall, staff believe that services have improved significantly. One participant referred to the decline in over-crowding which had been a normal feature of services in the past. However, a number of participants felt that there were still many problems with some aspects of the care system, such as difficulties with transition periods.
A lot of money is going into early intervention and school age services but little after that?. There are huge problems in the transition periods. It can be terrifying for parents when you see them trying to get a child from a buggy into a wheelchair - parents don't have the information they need. Once you are finished with your early intervention team, you are locked out for years and back onto waiting lists and you will not be seen for 17 years. The most terrifying transition is the transition into 18 and there is nothing. We only see children until they are finished school. A definite improvement is needed for child and parents.
Some participants believe that there are substantial numbers of people who are 'without any service', possibly because their parents chose not to use any services and coped alone when they were younger. This is resulting in elderly parents being cared for by an adult with a disability, who themselves need to be cared for.
Service provision was not perceived to be equitable throughout the country. Some areas and some of the longer established services tend to get more resources than others, resulting in some inequality in the distribution of services across the country. Services can also vary by catchment area.
Services vary by catchment area. I know 2 or 3 parents who have moved into our catchment area to get the service. Others who have lived in the area all their lives but the catchment area moved and they can't avail of services anymore and that is no fault of the parents. That is a very common thing. It could be due to moving from Health Boards to the HSE, from local administration to national administration, so you can have people in Dublin making decisions for people in Donegal when they don't know the local situation. They are talking of moving back to the older system. Some people can't avail of newer developments even if they are closer to their homes because they are attached to an older development.
Transport was singled out for particular mention because of its perceived importance to people with disabilities. A representative of the rural transport scheme said that in addition to facilitating movement between two places, the rural transport scheme has a strong social element. If someone doesn't travel on their usual day, people will check if anything is wrong. However, while some participants commended public transport systems for being accessible, others highlighted difficulties experienced by people with disabilities.
I use the Cork-Dublin train and they have to be commended for their wheelchair accessible trains and staff helping. A friend who is a wheelchair user and she is full of praise for them. All trains have areas for clipping wheelchairs in.Some Bus Éireann buses are wheelchair accessible but not everyone aware they have lifts. The way it works is that you ring Bus Éireann the day before, tell them what service you want to use, the time of the bus, so that they can send an engineer out to put the lift in and take the seats off. It is not an accessible service. A lot of ticking boxes is going on. Bus Éireann claim to have x accessible vehicles. Do they have any accessible bus stops? Some bus stops in rural Ireland are in the middle of 100 mph speed zones. I wouldn't think of going down there myself, let alone if I was in a wheelchair. Realistically it doesn't make sense to have accessible buses but non-accessible bus stops. The same for people who are partially sighted. They can stand at a bus stop with a guide dog but chances are the bus will fly past them. Also, some buses are dangerous for wheelchairs.
6.5 Independent Living
Independent living was not perceived by this group to be a static phenomenon and it changes according to a person's life-cycle stage, disability and other circumstances. Accordingly, the best type of housing for a person with a disability depends on 'what is happening in their lives at any one moment in time'. For some, it could be a two-storey building, while for someone else it is an apartment, and another it is a wheelchair accessible building. In your 20s, it can mean sharing with friends, while in your 30s, it may entail living with a partner.
When asked what factors would promote greater independence for people with disabilities in living lives they want to lead, participants made the following suggestions:
- Choice: 'Everything I would like for myself'
- Transport that is accessible, inexpensive and which goes places people want to go
- A home where they have a real choice who comes in or out
- Opportunities to be with their friends
- Employment opportunities, which would enable a person make money and feel respected
- Opportunities for people with disabilities to integrate with others who are able-bodied
- A Personal Assistant that is focused on the needs of the person rather than bureaucratic rules
- Control over funding that would give them autonomy on how it was spent and how resources are used for their benefit: 'To spend money in anyway they wished, to get out or stay at home, and to decide who is their carer'.
- More planning for long-term needs
- Early intervention services
- Information related to their disabilities e.g., what grants they are entitled to receive. This information should be consistent across the country and take account of people's literacy and other special needs
- Having friends to socialise with and/or a mentor or 'big brother/sister' who can act as a friend. Access to buildings and entertainment venues
- Acknowledgement that people with disabilities can contribute to society and that society will see this and acknowledge their role in society
- Achieving a balance between duty of care and allowing people to make mistakes and have negative experiences. Allow more creativity and flexibility in the interpretation of regulations
- A less professional service, which utilises carers from the community who don't have professional qualifications but who can befriend and support someone with a disability. It is important, however, to ensure they have Garda clearance and that there is adequate professional support for the person
- A change in public attitudes to people with disabilities
- Easy access to equipment, such as wheelchairs, that is necessary for mobility and getting people out of their homes
- An end to 'geographical apartheid' and equality of service provision throughout the country
- Less holes in footpaths
Furthermore, when participants were given an opportunity to suggest one area they felt would improve the independence of people with disabilities, they made the following suggestions:
- Resolving the mentality capacity issue and recognising that a person can be supported to make appropriate decisions for them and not be held back by families, services etc.
- It is very important that you have the right people present when planning for a person, not just those with negative views, people who are there to do a job for the person.
- Everybody living in a home where they feel they are meant to be
- Supports to counter loneliness of people placed into the community
- More community supports to make communities more supportive, clued in, interested, engaged, to live alongside people with disabilities e.g., starting at schools level with 'best buddies' programmes to permeate through society
- Integrated education system with no segregated institutions where person with disability is just a classmate with a disability.
- Schools with proper access and facilities
- Equal rights and access to education, housing etc by law. We are not a benign society and we need these by rights
- People who shout loudest should not get most of the resources and attention
- Fairness in funding, access to services, etc.
6.6 Concluding Comment
This group of frontline staff emphasised the rights of people with disabilities, with many of them highlighting instances where they believed the rights of people with disabilities were being abused. In some cases, this abuse was due to the persistence of historical and cultural practices, while in other cases, it was due to the reluctance of staff to take risks without the support of families or a higher authority. A number of staff acknowledged the improvements that had taken place over the years, initiated partly by the services, the HSE and more recently, through the work of independent advocates. However, barriers to further improvements are thought to exist, including the reluctance of parents to allow their children become more independent in case they end up returning home to be minded by them when they are too old.
The staff identified a number of challenges in working with people with disabilities including the impact of budgetary cuts on services, the misplacement of people with intellectual disabilities in psychiatric hospitals where they do not receive the necessary specialist care, difficulties in challenging mindsets and traditional ways of doing things, the fear many staff have of being held accountability resulting in some staff doing what is best for the system rather than the patient, and a lack of understanding shown by some staff of what independent living means for people with disabilities. This group also highlighted a problem mentioned by the parents of children with disabilities concerning the perceived inequitable distribution of services throughout the country.
The participants in these groups also identified a number of factors they felt would promote greater independence for people with disabilities including, choice, adequate transport, accommodation that is a real home, more opportunities for people to socialise and be with their friends, employment opportunities, personal assistants, greater control by people with disabilities over their funding and resources, more long-term planning, early intervention services, information relating to their disabilities, access to equipment, better footpaths and facilities, and a change in public attitudes to people with disabilities. However, most fundamental of all, is that people with disabilities would be treated with respect, dignity, and in accordance with their rights.