People and processes

In addition to the timing of implementation and conflation with cuts and closures, inadequate systems in relation to people and processes were also detrimental to the SDS assessment process and policy implementation.

People

Good working relationships between families and professionals were implicit in the SDS policy principle of collaboration²⁸. However, the timing of SDS

implementation was not conducive to good working relationships for participants; one of the main barriers was the absence of pre-existing

relationships with social workers. Longstanding resourcing issues within social work, together with the decimation of social care funding as a result of austerity, meant participants did not have existing relationships with social workers, as Sheila explained:

I did have a regular social worker but they withdrew them quite a long time ago… social worker would be phoning me up the night before to see

28 In relation to the principle of collaboration, statutory guidance states: ‘the professional and the supported person should work together’ (Scottish Government, 2014a: 17).

what's been happening the last year… so she could go to the review!... And then that was withdrawn...

(Sheila, 70s, mum to Gillian, 30s)

In all cases except one, SDS assessment was carried out by social workers not known to the families and this was a barrier to collaboration for several reasons:

lack of trust and feelings of vulnerability; assessors were not experts in this field; insufficient time was allocated to complete assessments; and social workers did not have all the information required. Each of these issues will be discussed in the following section.

Lack of trust and feelings of vulnerability

The nature of the assessment required people to reveal intimate details about private family lives and having a trusting relationship with the 'assessor' could help to support this, as Sandra explained:

It’s obviously trust involved isn’t it? That you’re telling, your child’s problems, their needs… they’re taking it in, they’re writing it down as they see it.

(Sandra, 60s, mum to Sharon 30s)

Families were made vulnerable by the requirement to disclose personal and intimate information to an unknown (potentially powerful) individual coming into their home for the first time. Admitting to social workers, and perhaps also to themselves, how difficult things could be placed families in a vulnerable position, as Sandra explained:

…they’re not that nice, happy, bright person all the time… They can be violent… sometimes people are kind of ashamed to admit that.

(Sandra, 60s, mum to Sharon 30s)

The vulnerability of families and the power of social workers was further illustrated by Janet, who spoke of the risks of revealing the truth about the pressure of caring:

…you’re tae tick a box²⁹…[in relation to the impact of caring] but you’re feart tae [say too much]… because what would that mean? They come and take your wean away?

(Janet, 50s, mum to Michelle, 30s)

Whilst participants were mainly positive about individual social workers, one family had a particularly negative experience and this had made the SDS

assessment process even more stressful. Sheila felt that her parenting was being criticised by a social worker who did not understand the difficulties in her caring

29 The tick box options were:

1. I am able and willing to continue my current caring role 2. My caring responsibilities have some impact on my daily life 3. I have some difficulties carrying out my day to day life 4. My carer role has a substantial impact on my lifestyle

5. My caring role has a critical impact on my lifestyle including a significant impact on my health and wellbeing

6. I am no longer fit or able to continue in my caring role as a carer even with support

role. Sheila did not allow Gillian in the kitchen whilst she was cooking because Gillian was inclined to touch hot pans and sharp knives; Sheila considered this to be caring for Gillian, but the social worker’s assessment disagreed:

I've had social workers say "you're not looking after her"… she [social worker] said to me… "and you're always in the same room as Gillian?" I said, "No, I'm not necessarily in the same room… but if Gillian's in the house, I'm in the house"… "well, you're not giving her full-time care then"... Well, I think I'm looking after her because I don't have her in the kitchen!… it's in her interests not to be in the kitchen, you know, but that's the rules…

(Sheila, 70s, mum to Gillian, 30s)

Both Sheila and Janet’s narratives of the assessment process demonstrate their genuine fear and defensiveness in response to administrative power and

bureaucracy. The importance of intimate knowledge and trusting relationships was rendered invisible by being implicit in policy narratives relating to

collaboration and partnerships. Having existing trusting relationships with social workers may have helped mitigate the risk felt by families in revealing intimate details about their private lives. However, social work structures and resourcing were not set up to maintain the type of long-term relationships with families which could have enabled knowledge and trust to develop.

Assessors were not experts in this field

Participants reported that social workers had been ‘drafted in’ from other teams in order to get through assessments as quickly as possible, as a result of both the restructuring of learning disability services and anticipated savings in the local authority’s social care budget.

This was a barrier to collaboration because social workers did not know the families, or understand their complex lives or histories, and may not have had experience in learning disabilities. As noted previously, only one family knew the social worker who carried out the SDS assessment with them; for the others, this was a barrier to understanding the complex realities of family lives and

impairment. Additionally, participants reported that social workers were under pressure to complete assessments quickly, which meant that they did not have sufficient time to fully engage with SDS values and principles and implement these in their practice. Nonetheless, individual social workers were often described positively; families understood they were under pressure from management and were sympathetic towards them.

The process of ‘drafting in’ social workers from other areas meant social workers did not appear to have sufficient understanding of impairment effects (Thomas, 1999) in relation to learning disability, which was detrimental to fulfilling SDS values and principles. For example, expecting people with learning disabilities to participate in meaningful ways in a normative assessment process neglected that the nature of impairment could affect ability to answer questions. Janet noted that Michelle would agree with whatever question or suggestion was put to her, and Sandra explained:

…you can’t ask … questions because by the time it’s all gone in and

processed, then they have to come up with an answer, it just freaks them out. They just tell you anything.

(Sandra, 60s, mum to Sharon 30s)

Insufficient time was allocated to complete assessments

In some cases, the SDS assessment took the form of a short meeting with an unknown social worker. In one case, a social worker completed the form herself in order to save time, as Sheila explained:

..."oh, I don't use the form… I just ask questions and I’ll fill in the form"…

I said “I want to see the form before you send it in” ... so then I

discovered she'd answered the questions that I should be answering! She'd just ticked the boxes where she thought! So, I thought, "no, that's not going in", so she wasn't pleased… I did that amendment and she said "I haven't time for any more amendments, so you'll just have to put up with it".

(Sheila, 70s, mum to Gillian, 30s)

In another example, the social worker took extra time and worked closely with the family but was berated by management as a result:

…I know she gets her knuckles rapped for not getting through them quick enough, so there’s pressure on the social workers.

(Sandra, 60s, mum to Sharon 30s)

The failure to invest sufficient resources into the processes of SDS

implementation suggested that the values underpinning SDS policy had not been embedded. Collaboration takes time, yet participants’ narratives showed that practitioners were overstretched and under pressure to complete assessments as quickly as possible.

Despite the limited time allocated to undertake assessments, there was one notable example of collaboration in the data. Maureen and Dan had anticipated difficulties in the assessment process and took a proactive approach to the assessment in order to mitigate this:

D: We told him [social worker] what was going on the form… he just kinda accepted that… it's all about covering yourself… how long did it take us tae write, to fill it in?

M: Three months. It must be three months. We went over it and over it and over it… there's things… that you don't think to put down, but you've got to put every single thing down.

D: I would say ours was probably one o' the best documented…

M: …and I typed it all out.

(Maureen and Dan, 60s, parents to Derek, 40s)

Following the initial assessment, the family and social worker continued to work collaboratively; the initial budget figure was not sufficient to meet Derek’s support needs and the social worker challenged this and negotiated an adjustment prior to advising Maureen and Dan of the budget. Although the revised budget still meant a reduction in Derek’s supported hours, Maureen and Dan felt they had been listened to and ‘the guy had done his best for us’ (Dan).

This example suggested that some people were better placed to challenge systems; Maureen and Dan felt that their previous professional experiences

helped them to negotiate the assessment process. However, not everyone is equally able to challenge in this way and be listened to. There was a risk that those with the greatest existing resources benefitted most from collaboration with professionals.

Social workers did not have all the information required

Participants strongly believed SDS was implemented before the appropriate systems and processes were in place, and this resulted in miscommunication and misinformation. Participants observed a lack of responsibility and accountability;

social workers were under pressure from management but they did not have all the information required to do their job properly, as Irene explained:

…she wasn't specialising in this – she was drafted in to get as many people put through this as quickly as possible... even when we were going back to her with things, she was kinda like "oh, don't come back to me, I'm just the messenger"…

(Irene, 50s, sister to Theresa, 50s)

For most families in this study, knowledge about SDS was largely limited to rhetoric about choice and control; participants were provided with little information about the actual SDS process, the four delivery options, service provision, or financial matters. However, SDS policy required much more than superficial discourse around choice and control; in order to fulfil the policy values and principles, the ethos of SDS needed to be instilled throughout the system.

Processes

As discussed in chapter three, co-production is key to SDS. However, rather than SDS assessments and care plans being co-produced and empowering for disabled people and carers, participants largely found their interactions with social workers and assessors to be a negative experience and there was little evidence of choice and control. Having the right people and structures in place prior to SDS implementation would have helped greatly. Participants believed that SDS was rushed in without appropriate support, causing long lasting damage to their engagement with SDS policy and with the local authority.

In addition to the problems related to staffing outlined above, there were also failings related to procedural issues. All of the families who had experienced SDS assessment at the time of the interviews recalled incidents of misinformation or miscommunication. These were often attributed to social workers having

insufficient knowledge of SDS and learning disabilities. In most cases,

participants felt they had not received the information they needed from social workers as part of the assessment process, and many felt that this was because the social workers themselves did not have a sufficient grasp of the key SDS processes. Failing to ensure systems were in place, and that social workers were fully informed, was a failure of the statutory principles of involvement and informed choice; disabled people and families could not fully participate in assessments or make informed choices without this.

SDS assessments were a complex and often time-consuming process for participants, and this was exacerbated because forms and processes changed throughout. Several participants reported having numerous versions of the self-evaluation questionnaire (SEQ) which formed the basis for the assessment. This was particularly confusing for participants who were in contact with other families, and two participants suggested inconsistencies in local implementation contributed towards confusion.

In addition to misinformation and confusion because systems were not in place at the outset, there were failures relating to the accessibility of information. As noted previously, the participants with learning disabilities had little to say about the SDS assessment process and it was the carers who were most involved.

In order to ensure the statutory principles were met in relation to people with learning disabilities, the accessibility of information should have been a key priority. For example, one mother noted that time constraints meant that the assessment did not focus on her daughter and that there was no attempt made to address the communication barriers which prevented her participation. Janet explained that the social worker had directed questions to her, rather than Michelle:

…so, she’s asking me the questions, no’ Michelle! And I said, “this isnae for me. This is for Michelle’s choice and her control and what she wants” … I didnae even think tae say, “Michelle can dae Makaton, can you dae Makaton? …bring somebody oot that can dae Makaton”.

(Janet, 50s, mum to Michelle, 30s)

The quote above illustrates a failure of the statutory principles of involvement and informed choice. Michelle was prevented from being involved or having an informed choice because no attempt was made to provide information in an accessible way or to facilitate Michelle’s participation. The quote illustrates that Janet too had very limited involvement in the process; the onus was on Janet to raise the issue of accessibility, rather than the social worker actively

anticipating and addressing potential barriers. Furthermore, Janet was unable to instigate a conversation about Michelle’s accessibility requirements, perhaps because she is not used to having control in negotiating support. Janet believed that the social worker was too busy to ensure that Michelle’s communication needs were met, but it also did not even occur to her to raise this. Social

workers needed to be able to create the conditions for people to understand what might be possible before they could begin to truly exercise choice and control.