Podcast Episode: ISBA 2016: Getting there - Roy McConkey
Category: Social work (general)
What follows is a transcription of the audio recording. Due to differences between spoken and written English, the transcript may contain quirks of grammar and syntax.
DM - Donald Macleod
RM - Roy McConkey
DM Well it is now my pleasure to introduce Professor Roy McConkey, who is the Emeritus Professor from Ulster University in Ireland. Roy is going to provide a personal, retrospective look at the progress of policy and practice around short breaks and respite care. We all know that progress can feel frustratingly slow at times and it's not always even, as Steve was just reminding us, it can be up and down and up and down a bit and sometimes we lose sight of what the long-term pattern has been. Roy, with the benefit of his many years of experience working to promote the social inclusion of people with disabilities and better support to carers, will highlight some of the success that have been achieved, where they have come from and what has still to be achieved. So, please welcome Roy to the stage, thank you.
RM Thank you very much. I think Scotland, for me, epitomises many things, but I guess above it's that 'can do' mentality, which I think typifies North Irish as well, because in many ways our inheritance comes from some of the Scottish influences we've had. The topic I've chosen for my contribution to getting you thinking is this whole aspect of, we know, somewhat, the potential of short breaks, and I'm sure it's been reiterated many times in this conference, and indeed Steve probably used those arguments when he was before the learned judge in the high court, arguing for how important it is to continue to provide short breaks, but I think there is still more potential to be unlocked and that's why I was thrilled to see the theme of your particular conference, and if we are to do that I think it begs a fairly fundamental question, do we keep doing what we've always been doing, do we just continue to evolve, or does it actually require something of a revolution? I want to explore that with you and, thankfully, you've got more scope this morning to take that further as you meet around the tables and discuss, because you will have many more insights to add, so please take this presentation as, maybe, a bit of a brain teaser, a bit of getting you thinking type opportunity.
Well, if you look back to the last millennium and where we have come in terms of disability services we have certainly made great strides in the range of services and supports that are available to disabled people and their families. We were commissioned by the chief medical officer in Northern Ireland to look at how services for children with complex physical healthcare needs could actually be further developed and supported. One of the activities we did as part of that exercise was to try and list, with professional groups and with parent groups, all the different professionals and services that they had been involved with, and this slide summarises the range of services that are now available in most developed countries, in Europe and North America and Australia, in terms of helping people. You can see that I have divided them into 4 quadrants: Education, Social Services, Community Health and Acute Hospitals, that's fairly typical of services in many developed countries. Then, within each of the quadrants you will see different people being mentioned, for example, in acute hospitals consultants will be very important, as might be ward staff, OT, physio and so on, and there is even a role for respite or short break provision, because some of the consultants told us that they would often admit children to the acute hospital wards simply to give the family a break. It wasn't necessarily that the child had a particular illness, although that could be covered by the child's ongoing condition. If you look at community health services, and of course, the shift in terms of providing for people with disabilities has been away from institutionalised hospital provision from the 50s and 60s, through to a whole range of community services, including psychiatry, dental, health care assistance, community nurses, community paediatricians, the list goes on. If your eye sight isn't good enough, don't worry, every box is meant to be a different person and you can't just see the sheer numbers of people.
If you move into social service then, again, you've a whole group of people, you have home help, host families, children homes and so on, and likewise in education. But, has all that growth really contributed to the quality of life of people and families and their children with disabilities? Certainly, there are some features of that service that really does highlight how we have responded to disability in the last millennium, when money was plentiful by and large compared to many other countries of the world, and what we have created is a system that is essentially separated. It's very difficult to get those four quadrants co-ordinated and working together. I know you in Scotland are trying to make some efforts on that behalf, but it's still a struggle, in many places, to get a more co-ordinated service. It also, by and large, is quite a segregated service in the sense that children with disability leave their peers, their siblings, to experience what we might take for granted in terms of an ordinary life. It's increasingly a specialised service so that people draw boundaries around themselves and they would say, well we specialise in providing host families, or we specialise in providing short breaks within a group home type setting, or we specialise as a home support service. So, we have created all these different specialisms that somehow want to be different from each other, because that's an important feature of making sure that other people recognise you and your contribution. But from a family perspective many of these service have to be shared with other people, it's not just for you this service, you might say in a moment of pique, to a family that is complaining that they are not getting enough. It's not just for you, there are other people, you know, have to get this service, so you might have to join a queue, you might have to be on a waiting list, you might have a rationed type of service. And I guess what's most confusing of all to people who don't interface with this quantum of service is that this is a world that is so apart from what their reality often is, and it's a baffling, confusing world to them. In many ways finding someone to signpost you through the system is a very critical and important dimension. We have created a service world that rarely suits us, as professionals, because when you start to look at some of the features of it, it's now under threat because of the inefficiencies that are inherent within that system, and with the lens of the 21st century millennium and the lens of austerity, that Steve has reminded us about, we have to say, well where are the inefficiencies? Well certainly it's in terms of duplication of services. You would have seen that short breaks or respite occurred in every one of those sectors, so short breaks are not particular to any one of them, it's duplicated. Acute hospitals do it, education does it through their residential schools, social services do it, community health services do it. There is duplication. It is also increasingly a risk aversive model of provision. We do what we have always done rather than trying to do new things that may entail an element of risk. This is particularly pertinent when the person with the disability is the recipient of the break. So, it is safer to keep them in a hospital ward, in a hospital bed, with 24-hour nursing care, than it is for them to go mountain climbing in the Scottish Highlands, that would be an altogether more risky experience. And yet, why not? Well some of it comes back, as I say, to the culture that we have created. We are getting to a point where we only respond to the crises because the resources, paradoxically, are not there to help do the preventative work, so we have to wait until there really is a crisis before you can really hope to get the service.
So, when families often talk to me about, well how do you manage to get a short break? I've been on the list for ages. One of the things I always say to them is, don't tell the social worker that you are keeping well and you are in good health, paint the worst possible picture if you really do want to get the service, and, of course, the whole service is increasingly being rationed. Eligibility criteria may exist on paper, but the danger is that people who are eligible, when resources are scarce, just gets less and less of the service. So, some of the home support services in Northern Ireland, where maybe families could have had three hours a week, are now cut back to one hour a week and parents will say to you, what's the good of that? Because by the time they come in and settled down, get themselves sorted, then they are off again. So, rationing creates an illusion of a service without really meeting peoples need, and it is ironic, for those of us who have worked in developing countries and delegates who are here from countries like India or Africa, are amazed to hear us say that we haven't the money to provide the short break services that families need. It's all becoming increasingly unaffordable and, certainly, if you talk to families they say, well we really need to start thinking again, we really would do a service, re need a service that is personal to us and to our needs and that means if I only need three hours a week, if I only need a break every couple of months, that's fine, give it to me. And if another family needs it for a whole week every month, or they need a particular type of service, then let's accept that so that we can make it personalised to what people's needs are. Parents like it to be flexible, and yet the evaluations I would have done with short break schemes is they often have to book their short place six months to maybe twelve months in advance, and if something changes in their lives and that week is no longer suitable to them, then they lose that opportunity. It's a very inflexible service, admittedly for good reason, and I can understand it from the service providers perspective, but we are looking at it now from the family's perspective. They also want it to be responsive, that when they need it they can be assured that they will get it and that they will respond to what they see are the particular needs of their families. A big issue has been that this service is not just for carers, but it is to benefit the person being cared for, so we have a two client models that we are actually following. I think all this has led us to think, can we really accommodate those qualities with our existing service framework. And increasingly, to my mind and to my analysis, the answer is no. We do need a revolution, we do need a revolution at least in the way we think about what the issue is and that change of mind set should, I think, then lead us to change some of our practices and policies.
Let me give you an example of what I mean, Martin Siegelman, who is often thought to be the father of positive psychology, has this as one of his guiding maxims, removing disabling conditions is not remotely the same as building the enabling conditions of life. That service model that I showed you is all concerned with removing disabling conditions to the best of our capacity and, in many instances, we are not able to achieve that. We ameliorate it, certainly, we help people live with their impairments and disabilities, but it is very hard to remove it. But what if you switched it around and said, well that's give people an enabling life and what would that, then, mean? Well another older, but also very wise person called Albert Einstein had this to say; what got you to where you are will not get you to where you need to be. So more of the same, more money to do more of the same, is not going to solve the problem. We do need to really think about what are the enabling conditions of life? And take less of a focus on the disability and impairments. What I am about to tell you though, won't be news to you because you actually have been living this, I suspect, but possibly underplaying its significance in what creates benefits to families and to people with impairments of deficits who benefit from your schemes.
The first important thing is that of relationship building, and that's one of the, for human beings, a very fundamental enabling condition of life. Having relationships with people you can trust comes up time and time again in any evaluations I've done in regards to short breaks, and what is even more amazing is that the relationships they have with, what we might consider in our career, hierarchies, the least paid, the least important staff, the people called care workers, health care assistants, the relationships they build with those individuals are what, really, is the bedrock of their support because the nurses come in and out, the doctors you see once in a blue moon. Yes, they are nice people, but do you trust them in the same way to open up with your issues and emotions. Second thing is that of inclusion, why can people not just live an ordinary life and be included in everyday things? One of the features, if you talk about it to people who use short breaks, is that sometimes they are very sad that they end up coming into a service for a break when, say, their family are going off on holiday. Why can't they be included in a family holiday? Well there are services, not a million miles away from this place, who have made that possible because one of the care workers from the service goes with the family on holiday to provide the extra support that the young person needed while they were on the break. So, including people in family life, in all aspects of family life, as well as including them in the mainstream of society and taking them to the highlands of Scotland, and not just to a hospital ward, becomes a really integral part of enabling conditions of life.
One very important factor for all human beings is our self-esteem, how do we think about ourselves? One of the things that strikes me when parents are faced with multi-disciplinary conferences, where there might be up to sixteen different professionals in the room, they are maybe becoming a bit more a thing of the past but not completely died out, is the parent must be left wondering, who am I to know what to do for my son or daughter when there are all these experts around the table who, apparently, know better than me? What does that do for your self-esteem? And if you are a person with a disability who needs extra care, personal care and so forth, what does that mean in terms of a burden? So possibly one of the greatest contributions you can make is actually boosting the self-esteem of the people who use your services, either as carers, in celebrating with them the marvellous work they are doing, and really meaning because you can pinpoint what you see them do that is quite exceptional in terms of the care they are giving. And to the person with the disability you can open their eyes to what's possible for them and for what they can achieve, and of course some of the para-Olympics, that we are seeing presently on our television, are the extreme form of that, where people have overcome the depression associated with their impairment and gone on to believe in themselves and take things further.
The other very important factor is emotional wellbeing. When you read that it's estimated that 50% of parents who have a child with autism, particularly the more severe cases of autism, are on some form of anti-depressive medication, or anti-anxiety medication, 50% of parents. The emotional drain of being a carer is one that you can probably only experience. We can observe, but we really don't know what it feels like, when truth be told, until we have that experience ourselves. So how we help people create better emotional wellbeing is going to be a key factor. One of the things we are beginning to appreciate more is that where we thought children's, for example, challenging behaviours might have produced poorer emotional wellbeing in the parent, it now seems it can work both ways. The poorer emotional wellbeing of the parent can actually produce and contribute to some of the behaviours that can be very difficult to manage within a home context. And, again, I think you have probably observed that and know well what that means, it's a dynamic relationship. You take the initial letters, RISE, then it's all about helping people rise, rise beyond the obvious, rise beyond the despair that they may feel and that may come from disability. And that's where the potential of short breaks, I think, really comes in, where you are there as a support for families, and by families of course I mean not just our tradition two parent family, we are moving into times and era where families are taking on many different shapes and constellations. Single parent families, reconstituted families, families who are headed up by gay and lesbian couples, you might have grandparent led families, foster families, there are a whole range of opportunities and now people might be concerned that there is nothing that can beat natures intended two parent family, the latest developmental psychological research would suggest that it's not actually the structure of the family that's important but it's those four things that I mentioned. It's the relationships within families, the inclusivity of families and connecting them to mainstream life, and helping provide people's. in boosting self-esteem and also improving emotional wellbeing. So, your challenge for the future may be reaching out to some of these families in ways that we haven't done before because sometimes the families feel that they don't qualify, and it's none of these unconscious, implicit messages that services sometimes can send out. No matter how we tackle it, and I am just going to review with you some of the ways in which we have tried to support families. I think I am more and more persuaded by what James Gallacher said, you know, we argue over a lot about what makes for a good service, what the evidence is that this approach works better than another approach, and indeed it's very much the flavour of the month in health and social care services, and yes there is some argument to be had in trying to identify what is the best, but I am struck more and more by what he said some 20 or more years ago, he said, you know the real advantage of what we do in our interventions may lie, in fact, in a new spirit of optimism and encouragement within the family that outweighs the detail of what we actually do.
So, there is much that you could achieve in a three hour a week home visiting programme that does instil that new spirit of optimism and encouragement. Bear that mind as you think through, how do we actually make that a reality in the work that we are doing in our short break service? Well I know, and you will know from reviewing the programme at this conference and from your reading the literature and so forth, that the support that we offer families often is within the 3 areas of home based support, day support or overnight, out of home type of support. I just want to give you some listing of the way in which those services have evolved in recent years, particularly, for example, if we look at home based services you've got a range of different opportunities, and I am thinking now of people who might be carers of people with dementia, people with chronic mental health issues, as well as people with disability, trying to map it against this wider population of care and shared care. I'm sure you could add to this list, I have just mentioned them as ones that I am aware of and know about, minding services, befriending service, which might involve the person being with the individual at home to take part in different activities with them, giving some help around the home, doing laundry, cleaning and general care like that, personal care for the person, some form of therapy, alternative therapies, massage reflexology and so on, for both the person who is the carer as well as the person needing care. That's grown into night sitting services where families who have disrupted sleep because of a teenager with autism and challenging behaviours, who doesn't sleep well, for the parents to get at least one night of, hopefully, unbroken sleep because someone else is in the house to attend to the waking child. An expensive service, but a much less expensive service than if the person was going in to fulltime care. And you may be able to add to those. How can we evolve some of our home-based supports to actually provide the range of help that people will need and do it in a personal way, flexible way, responsive way? And, arguably, those home-based services are much more easily meeting those criteria than others would be.
In terms of day supports, there is opportunity for people to go and visit relatives so that the carer has a break, they may go to host family, a non-related person, but an opportunity to be with another family, experience what that family is doing. There may be one to one and the person goes out and explores activities around the neighbourhood or in the community. They may attend a drop-in centre, somewhere like a Man Shed if you are a person with mental health problems. They might go to a local day centre, whether it's for older people, whether it's for people with learning disabilities, they could join clubs, they could go out and take part in entertainment, theatre, cinema and what have you. And, again, you can see the potential of these short breaks. They can be very personal, flexible, responsive and probably quite cost effective, and again it may be that you don't do it every day, and for some people once a week may well be sufficient, once a month may even be sufficient, but having the opportunity for people who are willing to do it for only a relatively short input, compensates for those people who will need much more of an input. If people do need an overnight break well, again, that can happen as they go and stay with relatives and those relatives might need some support, some incentive, even financial incentive, to cover some of the extra costs that are going to be involved. Again, they could go to a host family, they could go on a holiday break to an adventure camp, if they are young people who are really into active sports. They may go to a specialist home, a group home where they invite likeminded people to attend on the same week, the same overnight break, so it's a place where friends meet and they can have their pyjama parties and they can have some of their pizzas, watch movies and boxsets and so on, or maybe the children have particular, adults too, have particular specialist needs then they would maybe need some form of specialist unit where the people will be well cared for and have the opportunity to experience, for example, art therapy or other types of sensory experiences that they wouldn't get in their own home. There is the potential for fostering on a short-term basis where people have the opportunity to go and spend a week or more at a time, a shared care type of arrangement, or people might actually move into some form of fulltime residential provision, because short breaks are not to be confined into one particular model.
If you are really going to unlock the potential of short breaks then we have to see all of this starting to build bridges between people's care within home, within community, and then moving into fulltime services, where the people leave their family but create their own independent life, if you like. There is tremendous potential in terms of short breaks. The potential, also, to co-ordinate across those different models so that people can have both home based as well as day and then day as well as overnight. There is the opportunity for those to happen in natural settings, there is the opportunity to really mix the staff who are involved and to look at it in terms of recruiting people with expertise in sports and leisure every bit as much in clinic or nursing or social work, because we are in the business of creating an ordinary life for people. As I have emphasised, I think there is the potential to tailor to the family and the key thing above all else, though, is that we need to make this local.
I guess this presentation compliments Steve in a way that maybe the organisers and myself hadn't realised. He was actually saying how important it is to keep working at the top so that things filter down, I guess my message is that at the same time you need to work from the bottom up and you need to work locally. It is becoming a reality. Positive Futures is an organisation in Northern Ireland that has pioneered family support services in both suburban areas as well are rural areas. They wanted to try and get away from, if you like, the old image of short breaks, so they actually created a service that in the square boxes has these different dimensions. Supporting the young people with disabilities, and there are threads go off from that in terms of their inclusion in community activities, creating special activities for them to do, such as horse riding, Duke of Edinburgh award schemes and so on. Using person centred plans as a way of identifying how to tap into the young person's aspirations. They also provide a support to parents through advocacy, through guidance and organising dad's groups, having monthly home visit by the core worker, they also had a women's carers project, where they could do beauty treatments and likewise, as a way of boosting their own self-esteem and moral. They started to develop work for siblings and they also put an emphasis on developing the community resources and the potential for volunteering. All of that was done on a budget that doesn't even stand comparison, it's at 0.00% of what the health and social care trust would be spending on its disability services, really cost effective, but the big thing they discovered was that when you met family's needs in this holistic way, at a local level, the demand for places in higher cost short break or respite services dissipated. Some people certainly still needed them, but people, when they felt their needs were being met at this much more local level, stood much better chance.
Well I already quoted Albert to you before, let me leave you with one other very pertinent expression, or maxim, of his. You may feel that you don't have the knowledge and skills to take on board this vision of unlocking the potential of short breaks, you couldn't replicate something like Positive Futures because you don't know enough about community development, you don't know enough about working with siblings and so on and so on, well this is what Albert Einstein had to say to you;, you people who put your knowledge in faith and skills, He said, I am enough of an artist to draw freely upon my imagination, imagination is more important than knowledge. Knowledge is limited, imagination encircles the world. That's what you need if you are going to unlock the potential of short breaks in the area where you live and work, for the people that you have been called to service and support, because it's only you, by your very presence here, have taken on that responsibility to look beyond the past, into a future that is still unknown, but one that surely you can imagine and that, my friends, is the challenge you leave Edinburgh with, use your imagination.
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