Some of the cohort of disabled young people in the secondary data had cognitive and communication difficulties. The challenges for the researcher in conducting a meaningful interview, without using leading questions, and the challenges in analysing interview transcripts, were evident in the following extract from an interview with a 16 year old young man, when asked how he perceives his parents’ views on the choice of a new school:
WM [interviewer]: And do you think, did mum and dad think it would be good to go to that school? YP [young person] : Yeah.
WM: Why did they think it would be good?
YP: No .. yeah. WM: Why does mum think…?
YP: No it isn’t good.
WM: It’s not good?
While retaining an awareness of the challenges of analysing interview transcripts where some of the participants had cognitive and communication difficulties, overall there was a rich data set available which was used productively to address the first two research questions and to signpost areas for further exploration in the primary interviews with stakeholders.
What information and assistance is available to disabled young people in making choices?
Information in an accessible format at the right time is regarded as a prerequisite for informed choice (Maddison & Beresford, 2012). However, the research subjects were not always convinced that all information was necessarily helpful:
I think it’s unhelpful sometimes cos everybody just freaks you out a bit. It’s a bit too real when you have the information, whereas when you’re just going through it, it’s probably a good thing to think and what can you say, and nine times out of ten it’s always right anyway. (Young Person: secondary data)
There were other disabled young people who did find information useful and the internet a helpful resource:
WM [interviewer]: Having information, perhaps written information or Internet information or watching DVDs or videos about what you’re going to do?
YP [young person]: Internet.
WM: Having Internet information?
WM: About your leisure activities?
Although the internet was regarded as a useful resource by a few of the young people, the most common strategy for gaining information to inform choice was experiential, such as the young person visiting a resource (e.g. a new school or hospice). For those young people with the most severe cognitive and communication difficulties, choices were limited to routine aspects of daily living and were usually achieved by being presented visually with two choices (e.g. a carer holding up a choice of two articles of clothing):
WM [interviewer]: Do you like them to hold things up and show you and to talk to you? Is that how you like choice?
CF [paid carer supporting young person]: We do that when we go shopping, don’t we [young man, 21 years]? If we go out anywhere, if we’re looking at anything for [name] … We hold things up for you, don’t we [name]?
Who is involved in assisting disabled young people with informed choice?
Analysis of the secondary interview transcripts revealed that parents, and especially mothers, play the most significant role in supporting disabled young people in making choices by listening, providing emotional support and sharing in the decision-making process. The extent to, and strategies by which, parents actually informed choice varied considerably and were seen to be related to cognitive ability and age of the young person.
One of the main findings from the Choice and Change project was that the process of making significant choices was shared between the young people and parents, and this was welcomed by both parties (Mitchell et al, 2011). However, the secondary analysis of the subset of the data found that parents often had a more nuanced approach to deciding which choices and to what level the young person should be involved, as evidenced by the parents in the following extract who think they know their child’s views on his Personal Assistant without consulting him, but were prepared to take him to visit his new school:
[Interviewer]: So has [young person] been involved in, in again this process of sorting out [female PA’s] move?
F [Father]: No…
M [mother]: No…
F: …no, not, that’s .. he, he’s aware .. he’ll be aware of it, we haven’t hidden that from him…
F: …but .. if you asked him who would you like…
M: He’d say Mrs [surname].
F: …I would, I would think he would say [female TA first name].
M: Yeah. No we haven’t worried him with that, cos then he’d start to panic. But he’s looking forward to going to look round the school.
Interviews with a 21 year old woman present a picture of someone who uses her mother for emotional support, rather than information and advice, and she is critical of the role of many other parents with disabled children in decision-making:
WM [interviewer]: Do you think some young people do rely on others then too much?
YPF [young person]: Yeah. I think as soon as, with some parents, because they just hear the word disability or like an illness, they wrap them up and they make all the choices and they put them in this like lovely fluffy world, do you know what I mean? Lovely pink fluffy world, or blue (laughs) if you’re a boy I suppose, and everything’s perfect and you know what life is not like that, and I think people should know more about life so they can experience it.
The role of professionals (doctors, nurses, social workers, etc.) was rarely acknowledged in the secondary data, or where it was mentioned, often portrayed in a negative way. There were some exceptions to this generality, especially in the few cases where the young person had established a long and trusted relationship with a third sector service provider such as a children’s hospice. Evidence of professional input to informing choice from the secondary data set was largely either absent, or seen as being inconsistent, coercive, and sometimes inaccurate by those interviewed:
YP [young person]: Yeah, like one [doctor] will say one thing and another [doctor] will say another, which is a big massive thing. [Interviewer]: Mm, mm. How does that make you feel?
YP: I don’t know I just, it just sort of pisses you off in a way, don’t it really, when one, cos they’re meant to be the ones who like know it all and they haven’t got the answers. Well why do I even bother then, do you know what I mean?
The secondary analysis introduced the first phase of the realist evaluation cycle by identifying middle-range theories that point to the potential mechanisms and contexts that may lead to certain outcomes. These theories indicated the importance of emotional support (especially from mothers); involvement in choice being related to the individual’s cognitive and communication abilities; professionals being largely peripheral to informed choice; and the importance of accessible and trustworthy information, especially experiential, in informing choice.
The knowledge gained from the secondary analysis informed the second phase of the research strategy: interviews with a range of stakeholders in order to develop specific hypotheses in terms of what might work for whom in what circumstances with a focus on the facilitators and barriers to informed choice in the context of self-directed support for disabled young people in transition.
Primary data analysis: hypotheses development using stakeholders’ knowledge
The realistic explanation of programs involves an understanding of their mechanisms, contexts and outcomes, and so requires asking questions about the reasoning and resources of those involved in the initiative, the social and cultural conditions necessary to sustain change, and the extent to which one behavioural regularity is exchanged for another. (Pawson & Tilley, 1997, p.154)
Pawson & Tilley (1997) describe the distinctive knowledge of subjects, practitioners, evaluators, and policy makers. Subjects are most aware of the mechanisms in operation; the reasons and resources which encourage change. Practitioners translate policy into practice and will have direct experience of what it is about the policy that works (mechanisms), to have experienced successes and failures (outcomes), and to have some awareness of the people and places for whom the policy works (context). Evaluators tend to carry theories into their contact with subjects and practitioners and will begin to develop context, mechanism, and outcome (CMO) configurations, but may lack local detail. Policy makers will hold overarching theories about how the initiative will generate positive benefits (outcomes).
The policy of self-directed support is intended to improve outcomes for all adults and children who require social care supports. The guide to the Social Care (Self-directed Support) (Scotland) Act 2013 makes clear the expectation of behavioural change from both local councils in terms of listening to what people want, empowering them to achieve positive outcomes, and for individuals to think and act differently about their support needs by accepting both rights and responsibilities (Scottish Government, 2013).
This need for behavioural change from local authorities and individuals was emphasised in the interview with the Government policy maker:
The way that care and support has been provided in the past and the lack of information about things they could do, not just for the individual but for the social worker themselves has meant that people have made, not rash decisions, but decisions that have been automated, so they will pick from this list of services kind of thing, so there is something about informed choice of there being that wide range of different options and things you can do in a different way if you are given the right information.
Pawson & Tilley (1997) point out that a vast web of unarticulated theory lies behind any policy or social intervention, but these theories generally remain implicit or are presented as broad assumptions; for example that choice and control in SDS will lead to improved outcomes. How the policy of self-directed support is expected to lead to behavioural change and improved outcomes for individuals requiring social care support can be thought of in realistic evaluation terms of context (C), mechanism (M), and outcomes (O) configurations as:
Variety of providers of good quality support (C) + Informed choice and control for the individual (M) = Improved well-being for individuals and their carers (O).
The potential for self-directed support to transform the lives of disabled young people and ease the transitions process was stated by the Co-ordinator of a national transitions forum (a third sector organisation):
The potential of self-directed support as it applies to young people with support needs in transition…that is the place where we should be making it work…it is easier to work where people are not caught up with existing services. My expectation is that young people and families will more readily adopt self-directed support models than say people in families who may already be engaged in traditional service provision, day centre provision for example for some years.
Researchers should be CMO configuration experts and the test of validity for a realist investigation is not the true representation of the participant’s attitudes or beliefs, but whether the data accurately captures those aspects of the subject’s understanding which are relevant to the researcher’s theory:
On the realist model, data collection is thus charged – not with the descriptively infinite task of capturing the stakeholder’s ideas, beliefs, hopes, aspirations about a program, but with the task of demonstrating which aspects of these beliefs are relevant to the CMO theory under test, so that the respondent can contribute to that test. (Pawson & Tilley, 1997, p.164)
Facilitators of informed choice
Support (both emotional and practical) for disabled young people was seen as an essential component of informed choice and it was recognised by a number of stakeholders that this support could come from a variety of people, and that the disabled young person needs the space and time to accept the support on their own terms as indicated by the statements from the policy maker and the Head of a college:
I think this [support for the individual in terms of informed choice] is the crucial part of making care and support work for people and that is something that we are exploring quite a lot policy wise and I know that people at the front-line explore it all the time in terms of your information and support can come from a variety of places […]. (Policy Maker)
What made that possible? She was not forced into it. She had enough time to work things out in her own mind. (Head of Independent College)
A disabled young woman indicated the importance of the availability of advice and support from trusted others but stressed that she was the one who had chosen these people and the final decision was hers to take:
When I am really unsure about something I will ask people. I surround myself with people who know me. I am going to make the decision, but ‘help!’ […]. At the end of the day, I will make the call. But if you can get other people’s views, their take on it, to see where they come from, because they may be able to see aspects that I may not have thought of. (Disabled Young Person)
Support from peers can also be a significant factor in informed choice:
What people tell us is the most helpful is when someone in a similar situation tells them what has happened to them. It is hearing from each other. I strongly believe that is the way that it will work. (Co-ordinator, National Transitions Forum)
Having someone prepared to negotiate on behalf of the young person was seen as essential if informed choice were to be realised.
For one young person self-directed support has worked brilliantly for her because her parent is so confident and capable and able to negotiate, and a lot of carers don’t have those skills. (Carers’ Advocate)
An alternative approach to advocacy was that of self-advocacy where an organisation supported a group of young people with learning disabilities to advocate for themselves.
Our experience is in that working with young people individually and collectively on SDS as an idea in [name of Scottish Government test site region] before SDS had started seemed like a very good way to do it because there wasn’t then…it wasn’t loaded with anything else…it wasn’t loaded with the closure of your day centre. [..] Many of that group when SDS became an option for them chose it and it has worked well for them. (Co-ordinator, National Transitions Forum)
SDS and family networks in rural areas
Urbal Region in partnership with the Scottish Government piloted self-directed support for disabled young people in transition. A Care Inspectorate scrutiny report found that all participants they interviewed were positive about SDS, with the emphasis on choice and control leading to improved quality of life. However, parents were often critical of their experience of transitions and believed that SDS could be better promoted by social work staff (Care Inspectorate, 2011).
The introduction of self-directed support, with the young person being given an individual budget, was seen as being a facilitator of informed choice in rural areas where there were strong family networks to call upon and SDS can also be used to finance micro-enterprise (Lockwood, 2013).
There are a few examples of people in rural areas thinking of innovative solutions such as social enterprises but there are lots of areas where there really is nothing for the young people to do, but I see SDS as the solution to that. (Independent Consultant)
In a rural setting perhaps the young person grew up there, has a good family network, good friends, and finds it really easy to recruit a staff of ten who can step in for each other and work appropriately […]. (Carers’ Advocate)
Positive expectations whether from parents or professionals with a focus on strengths and achieving positive outcomes can contribute to informed choice.
If you start from someone’s own interests and aptitudes you’re much more likely to move better and achieve better outcomes, whether that is meaningful things to do, whether its social skills. […] Just knowing you have a choice can lead to positive outcomes because suddenly they have got control, suddenly the responsibility is not with somebody else, you have some control over those outcomes. (Independent Consultant)
It was recognised that many parents and professionals would benefit from support and possibly training for them to adopt an outcomes focus based on a strengths’ model that accommodates positive risk taking.
Awareness and training for parents and advocates so that they have the information. You need local stories that you can relate to. (Social Worker)
There is risk; other people get to take risks. Informed choice must include the right to take risks and that is the thing that people don’t get. (Independent Consultant)
As with the participants in the secondary data set, there was evidence from the interviews of the importance of experiencing a support or a service first-hand rather than relying on written or other second-hand information.
I suppose if you wanted to, if you want someone to assist you, you can go onto Google and get the people from there to help you that way. I am a very old school person. If I want to go and see something I will see it. I like people, don’t get me wrong, but I would rather go and see it. (Disabled Young Person)
Barriers to informed choice
Stakeholder interviews revealed a number of barriers to genuine informed choice for disabled young people including a lack of a variety of supports especially in rural areas, insufficient accessible information, low expectations for the disabled young person from parents and professionals, the individual young person’s cognitive and communication difficulties, organisational bureaucracy, and services that were not working collaboratively.
Lack of accessible information
Disabled young people and their families need accurate and trustworthy information in a format that meets their needs. While awareness of this requirement is increasing there is a need for this to be more consistently realised in a way that disabled young people value.
There is a lot still to be done by provider organisations about the information they provide to support choice and how support organisations market themselves. I can’t help feeling that there is a subtlety to it that hasn’t been picked up on yet. […] I suspect it is going to be around personalities and organisational culture and attitudes and I think there is a long way to go. (Co-ordinator, National Transitions Forum)
It was recognised that parents are often under severe stress at times of transition for their child and that can influence their ability to promote choice for the young person:
I am usually called upon when things are not going well and quite often the youngster has perhaps such a complex need that they cannot have a voice except through their parent carer and the parent carer is so worn and tired that they can’t be imaginative in suggesting what might be best. They want services to identify different options, so there is some kind of menu of suggestions. (Carers’ Advocate)
Professionals were sometimes critical of parental attitudes and expectations in terms of parents not allowing their adult child to engage more fully in decision-making and attempting to avoid risk:
What I am picking up, it’s a classic social work issue, and also I suppose a policy issue, is parents letting go. (Policy maker) I see families as a bit of a hindrance at times. As social workers we are trying to build independence and it is frightening […] we are trying to give young people a voice but a lot of parents speak on their behalf […]. (Social Worker) One barrier for young people in transition in particular is, and, it’s with the best will in the world, it is their parent/carer and some of it is that they are so used to making decisions for that young person […] (Independent Consultant)
However, there was recognition that parents often feel unsupported and lacking information at times of transition and this can understandably cause them to try to take some control in such stressful situations:
I think to criticise parents for that [not including the young person in significant choices] is not the right thing at all. […] Who can criticise when the system fails so badly [to provide information and options]. They will say ‘I will settle for the thing that gives most security’.[….] The use of self-directed support in that decision-making process through transition at an early age, you can look at young people taking control of their lives gradually and parents giving up control of things using the self-directed support model. (Co-ordinator, National Transitions Forum).
Professionals can also express low expectations for disabled young people and to operate from a deficits, rather than strengths, perspective and for the professional to be seen as the problem-solver, not the individual:
Professionals working with young people see the not possible and not the possible. It doesn’t fit in the box as we understand it therefore the answer is no. (Independent Consultant)
For me there is something about expectations that we have as professionals or carers, looking at someone and asking what we think someone could achieve and then only ever being pegged at that level. This can filter into the young person so that they think that is all they can do. […] Generally there is a lower level of expectation for our young people and that acts as a barrier to informed choice. (Head of Independent College)
But if they can’t figure it out, they can’t work out how you can figure it out. Because they can’t come up with solutions, then when you come up with solutions they go ‘oh, where did that come from?’ (Disabled Young Person)
In Urbal Region, despite SDS being in place for the past 3 years, some services gave the impression that they were the ones who defined how realistic a young person’s goals were, and did not promote informed choice as the norm, although acknowledging that ‘potentially’ young people could get access to information:
It’s about supporting the young person to work towards their goals and ambitions. To work towards these obviously they have got to be realistic. (Service Provider)
Potentially there are opportunities for them [young people] to meet with those that provide social care and find out more information about that service. […]. There are some choices of where you want to live when you leave care and potentially opportunities to visit these places. (Service Provider)
What I don’t think is helpful are visits to service providers […] because it raises expectations […]. (Social Work Manager)
Child and adult services not working collaboratively
There are issues in Urbal Region with the lack of integration and coordination of services both between child care and adult social care, and social care and health services. Health and social care integration has not resolved these issues, because child care services are led by the council, while the NHS leads on adult care services. This has created an organisational divide between child services and adult services which can cause problems for disabled young people at transition.
I get an impression that sometimes people can feel a bit overwhelmed by all the different professionals, repeating the same story again and again. It is that lack of integrated services are a barrier to informed choice because you are getting all the different parts of the sector coming in at different times with their different assumptions about how they can help you. (Policy maker)
There is not a clear pathway for people with learning disabilities. NHS and Social Work integration has not solved this. We are further away from children’s services which remain with the Council. (Head of Independent College)
There are issues about engaging Adult Services in the transitions planning process. A lot of the planning for transitions is done by Children’s Services on their own. It isn’t good […] they are not necessarily the best people to be advising about choices for adulthood. (Social Work manager)
Organisational bureaucracy with its understandable requirements for assessing against eligibility criteria, managing risk, and ensuring proper use is being made of public funds can be a barrier to informed choice, limiting responsiveness, flexibility and creativity:
It is not unusual for a school or a parent to want the young person to come here but they don’t have a social worker, and if they don’t have a social worker then they have to get one. (Head of Independent College)
[…] if you want to go out for an evening […] then you should be allowed to do so. You are still obstructed by gatekeepers [from Social Work] who say actually you can’t just do that; we have to make sure it’s done properly. (Disabled Young Person)
Lack of services in rural areas
The lack of existing social care supports in rural areas was raised by a number of stakeholders as being a barrier to choice and for those without strong family networks or local innovative social enterprise initiatives this can result in either a lack of choice or no supports whatever.
It is reflected in the national strategy because it did come up as an issue about the lack of providers in rural areas […]. (Policy Maker)
Quite a number of self-directed support clients are SDS clients not through choice and the reason is there is no service provider in that area. (Social Worker)
As you go out of here [the city] there are limited resources in terms of supports that are around. You know, there are some places that there are not any housing support hours or it’s one person that is doing it. There are no housing options […] and transport is a big issue […]. (Service Provider)
Even where family networks or local social enterprises are available to provide supports, the options by which self-directed support is provided are restricted if there are no services available from the local authority or an established third sector care provider
One of the fundamental issues in rural areas is over genuine choice […]. More innovative approaches to providing choice such as through family networks or social enterprises are based on the assumption that people are going to choose option 1 [a direct payment]. […]. So the danger is you can go down the family network or micro-enterprise approach but there would still be a reduction in choice […]. (Co-ordinator, National Transitions Forum)
The default option is naturally perceived as the normal choice. Deviating from the normal choice is an act of commission, which requires more effortful deliberation, takes on more responsibility, and is more likely to evoke regret than doing nothing. These are powerful forces that may guide the decision of someone who is otherwise unsure of what to do. (Kahneman, 2011, p. 413)
For some young people there is a need for someone to advocate on their behalf in order to realise choice, and there is a possibility that making choices based on what their peers have chosen before them could promote the status quo at the expense of innovative, person-centred choices.
Some young people can identify that they want to come here but if they don’t have a pushy parent or social worker then they may not be able to realise that choice. (Head of Independent College)
Young people tend to make choices based on what their peers have done. […]. A lot of the young people will maybe know someone who has worked with that service and will get information about them and that usually influences their decision about who they will work with. (Service Provider)
A further barrier to informed choice can be the individual’s attitude towards the relationship between the individual and the state in terms of self-directed support and accepting the associated rights and responsibilities:
When you are faced with making decisions yourself when it goes wrong sometimes people can revert back to blaming social work as they can expect to be taken care of and so there is a kind of challenge there for individuals[…] it is a different model of social care. (Policy Maker).
The individual’s communication and cognitive abilities were seen as factors that impact on opportunities for the young person to make informed choice on significant life events. However, it was recognised that choice making is a process and that these skills can be developed to some extent.
[…] people need to have some choosing ability and I think a lot of young disabled people don’t because somebody may be only able to choose what clothes to put on, or because of their disability someone else makes these choices all the time, so I think informed choice means that you need to let people learn to choose. […]. They need to get little choices at an earlier age, and they need to be allowed to choose the wrong thing (Independent Consultant)
There is a danger that insufficient support will be given to disabled young people with more complex needs in order that they may realise informed choice.
The reality is that [the individual’s cognitive and communication abilities] is going to be an issue…no doubt about it…but there would be a danger if it became too much of an issue. We should know how to support people with complex needs to make choices. (Co-ordinator, National Transitions Forum)