Prepared for the LGA by Alma Economics, March 2023. The views expressed are those of the authors and are not necessarily shared by the LGA nor do they represent LGA policy.
In the UK, one in five people are known to have some type of physical or mental condition that considerably impacts their ability to carry out normal daily activities for a long period of time (DWP, 2022). Despite the prevalence of disability within the general population, disabled people experience more disadvantages compared to non-disabled people in key aspects of their life, such as wellbeing and employment.
For example, when asked about their life satisfaction disabled people aged 16-64 scored lower than non-disabled people of the same age group (6.5 out of 10 compared to 7.6) (ONS, 2022b). Disabled people were also more likely by 11.5 percentage points to report feelings of loneliness compared to non-disabled people (ibid). With regards to employment, between July and September 2021, only 53.5 per cent of disabled people aged 16-64 years in the UK were employed compared to 81.6 per cent of non-disabled people of the same cohort (ibid). Research into the lived experiences of disabled people has also revealed their struggles in accessing and using social care services, including inadequacies in the provision and offer of the support needed, and the impact this can have on people’s quality of life and wellbeing as well as on the lives of their families (Disability Unit, 2021).
Alongside these challenges disabled people also face the ongoing effects of the Covid-19 pandemic as well as the current cost of living crisis. Covid-19 led to losses of routine, activities, and contact with family and carers, with the death rate for people aged 18-34 with learning disabilities 30 times higher than that of non-disabled people from the same age group (LGA, 2021). In addition, poverty rates for disabled people are already consistently above those for non-disabled people, with a third of disabled people in the UK living in poverty (JRF, 2023). A report by Scope revealed that 9 in 10 disabled people were worried about their energy bills over winter and over half were concerned about affording food in the following months (Scope, 2022).
In this context, the Local Government Association (LGA) commissioned the present piece of research to identify ways in which the support offered from local authority social care services to people with lifelong disabilities (including their families) is working and how this could be improved, with particular interest in the transition of disabled people from children to adults’ services (where appropriate). To do so, this research was designed to:
- Encompass the views of both sides, service seekers/users and service providers.
- Ensure that participants were supported during their engagement with us to make their voices heard.
- Create compelling narratives to illustrate key take away messages.
This research commenced with a scoping stage and a review of existing evidence, the findings of which informed the development of discussion guides for interviews with social care staff, disabled people, and their families. These discussion guides were semi-structured to ensure that essential information would be captured from all participants during the interviews, while also allowing the interviewer to go off script and expand on additional topics introduced by each participant, thus ensuring that people’s individual experiences would be reflected in the analysis.
Despite rigorous recruitment processes, challenges were faced when recruiting participants to take part in these interviews. Councils and representative groups expressed that their staff were over-burdened at the time of this research and did not have the time or resources spare to participate, despite feedback that the research was worthwhile. Two interviews were eventually achieved at local authority level, one of which added to the findings of the scoping stage too. Recruitment of disabled people for interviews encountered similar barriers, with only parents of children and young people with disabilities eventually engaging in the research. In total, 13 interviews with parent carers were conducted. Therefore, two literature reviews were completed in parallel to the parent-carer interviews, one exploring the perspectives of disabled people on accessing social care services, and the other exploring service providers’ perspectives on providing these services. The interviews conducted are used to illustrate and add depth to the literature review, and while we recognise the limitations of the research as a result of the recruitment challenges, by collating a range of evidence, we believe this report presents a clear picture of challenges within current systems upon which research into potential solutions can be built.
A note on the term “transition”
Throughout this report we use the term “transition”. It needs be noted that the term ‘transition’ here is not used to imply that all young people eligible for support as children will be also eligible as adults considering that thresholds for support differ between children and adults’ social care services. Instead, ‘transition’ is used to highlight that where a user of children services will be eligible to access support in adult services, this change needs to happen in a coordinated and smooth way. The period of transition also differs depending on the services and sometimes the user’s needs, but it is expected to start before the age of 18 (usually between 14 and 16) and be concluded by the age of 25.
People with disabilities in England: A profile
Review of existing evidence
The review has allowed us to create a representative profile of the 12.2 million people with disabilities in England to examine their lived experiences of local authority social care services, especially during the transition from children to adults’ services. The profile consists of age, gender, ethnicity, disability, educational, employment, and geographical characteristics as detailed in the following paragraphs.
The majority (61.5 per cent) of the 14.6 million people with disabilities in the UK were over 50 years old, representing 37 per cent of the general population in this age group in 2021. The gender representation in this age group was almost equal, with 55 per cent being female. On the other end of the age spectrum, 9 per cent of the people with disabilities were under 19, representing a 9 per cent incidence of disabilities among the general population of this age group. The majority (61 per cent) of the individuals in this age group were male, while in the entire disabled population, females had a small majority (56 per cent). Overall, the weighted average age of people with disabilities in the UK was 53.4 years old, which was similar both for males (51.7) and females (54.5) (DWP, 2022).
Regarding the ethnicity breakdown of disabled people using social care services, mixed white and black Africans were the most likely to use mental health, learning disabilities, and autism services in 2021. Specifically, 7,569 per 100,000 individuals were of mixed ethnicity, and most commonly, mixed white/black African (5,268). The second most common ethnicity was black (5,125 per 100,000), and particularly, Black Caribbean (5,068), followed by white (4,042) and specifically white British (4,041). The least frequent users of mental health, learning disabilities, and autism services were Asians (3,570 per 100,000), the majority of which were Bangladeshi (4,562) (NHS Digital, 2022a).
The incidence of each type of disability was examined using the Family Resources Survey (DWP, 2022). The most common disability in 2021 was mobility impairment which affects 22.97 per cent of the disabled individuals, or 6.8 million people. The second most common impairment was stamina/breathing/fatigue (16.22 per cent), followed by mental health (14.53 per cent). 11.15 per cent of individuals suffered from dexterity impairments, and an equal percentage of individuals had disabilities classified as “other”. Up to 2 per cent of the UK population in 2020 was autistic, or 1.8 per cent of children in England in 2021 (NHS Digital, 2020; Roman-Urrestarazu et al. 2021), with autism diagnoses increasing significantly over the past two decades (University of Exeter, 2021).
It is worth recognising that disabled people will require different types of support depending on their individual needs, and this means that the incidence of a disability does not always translate to the need for or cost of support. For example, individuals with learning difficulties represent 5 per cent of the disabled population but account for 43 per cent of net current expenditure on long- and short-term care in England. Learning disability support can be the most expensive type of support, depending on the type of support needed, as it can cost more than £1,700 per week for residential and nursing care combined (NHS Digital, 2022).
The type of disability has a direct effect on the frequency and duration of the support received. The aforementioned disabilities are the most common and constitute lifelong disabilities so, as a result, more adults received long term support (841,245) as opposed to short term (246,600) (NHS Digital, 2022b). Of all people receiving care, 44 per cent received continuous support, 22 per cent received support several times a day, 15 per cent several times a week, and 11 per cent once or twice a day. Continuous support was the most common frequency for children aged 0-15 (81 per cent), while least common for adults over 85 (30 per cent). Adults aged 25-34, and 45-54 mainly used support several times a day (30 per cent) and several times a week (25 per cent) respectively. Individuals over 85 mostly required support once or twice a day (24 per cent) (DWP, 2022).
The level of educational attainment of disabled people varies depending on the type of disability. Those with severe or specific learning difficulties have the lowest educational attainment, with 58 per cent of them without a University qualification. 27 per cent of people on the autistic spectrum have no qualification, while 28 per cent of those with diabetes have GCSE grades C and higher or equivalent. Individuals with mental illness or nervous disorders have a similar educational level, with 26 per cent having GCSE grades C and higher or equivalent, and 19 per cent having GCE A level or equivalent. 26 per cent of those with depression, bad nerves or anxiety have a degree or equivalent, 23 per cent have GCSE grades C and higher or equivalent, and 22 per cent have GCE A level or equivalent (ONS, 2022).
Education is often linked with the employment status of individuals, which in turn correlates with their financial independence. This causal chain is also applicable to disabled people, since the lower level of qualifications compared to the general population (13.3 per cent had no qualification in 2021, compared to 4.6 per cent) could explain the lower employment levels observed among disabled people (51 per cent compared to 75 per cent). The employment level of non-disabled people is 26 percentage points higher on average, in every age group, while the greatest difference is observed in 55–59-year-olds, where 48 per cent of disabled individuals are employed, compared to 83 per cent of the general population.
The type of employment differs between disabled and non-disabled people. Of those disabled people employed 68 per cent are working full time, compared to 78 per cent in the general population. Furthermore, 20 per cent of employed disabled people are in professional occupations (versus 24 per cent), 14 per cent in associate professional and technical (versus 16 per cent), 12 per cent in caring, leisure, and other services (versus 8 per cent), and 11 per cent in elementary occupations (versus 8 per cent). However, the breakdown of self-employment rate is similar between disabled and non-disabled individuals, since 87 per cent in both groups are employees Regarding self-employment among people with different disabilities, individuals with autism and severe learning difficulties are the least likely to be self-employed. Specifically, 7 per cent of individuals with autism, and 8 per cent of those with severe learning difficulties are self-employed (ONS, 2022a).
As with the educational level, employment status also varies by disability type. In 2021, individuals with autism had the lowest employment rate (29 per cent), while people with diabetes had the highest (60 per cent). There are also regional differences in the employment rate of people with disabilities. In particular, the South East had the highest employment rate for disabled individuals (60 per cent) and the smallest difference in employment rates between non-disabled and disabled people (21 percentage points), while the North East had the lowest rate (47 per cent) and also the greatest difference (32 percentage points) (ONS, 2022a).
Data by the Department of Work and Pensions (DWP, 2022a) suggests that more than £24 million was spent in 2021 on disability benefits, with the majority (£14 million) being personal independence payments. Also, £13.5 million has been spent on incapacity benefits, almost all of which has been employment and support allowance. Benefit claims depend on the composition of the “benefit unit”; this is the family grouping used for assessing benefit entitlement and is defined as a “single adult or couple living as married or cohabiting and any dependent children” (we refer to them as ‘families’ hereafter). For instance, families with at least one disabled adult received income-related benefits in 30 per cent of occasions, while those that also had at least one disabled child received these benefits in 45 per cent of cases. Regarding disability benefits, families with at least one disabled adult received the care and mobility component of the disability living allowance in 4 per cent of cases, while those with at least one disabled child in 21 per cent and 11 per cent for each respective component. The percentages for families with both at least one disabled adult and child received these components in 18 per cent and 10 per cent of occasions (DWP, 2022).
One indicator of socioeconomic status could be the housing situation of disabled individuals. 39 per cent of disabled individuals were owner-occupiers in 2021, compared to 53 per cent of non-disabled individuals; 25 per cent lived in socially rented housing, compared to 8 per cent of the general population; 16 per cent live with their parents, while this percentage for non-disabled individuals is 19 per cent; and 17 per cent were renting privately, which was the same for the general population (ONS, 2022).
As discussed previously, the type of disability can have a significant impact on several of the examined indicators, including the housing situation. Specifically, the majority (76 per cent) of people with autism were living with their parents, 35 per cent of individuals with mental illness or other nervous disorders were in social housing, and 30 per cent of people with depression or anxiety were owner-occupiers.
Lastly, an area where no differences are observed between disabled and non-disabled people was civic participation, where both groups were as likely to have been involved (43 per cent compared to 46 per cent) in activities such as signing a petition or attending a public rally, civic consultations, civic activism, and social action (ONS, 2022a).
Our data and research review has also uncovered evidence gaps in the area of social care for lifelong disabilities. In particular, while there is data on the need for long- and short-term support and for primary reasons for needing support, there is scarce evidence around the level of disabilities, as only the ONS provides relevant information, albeit at a very high level (i.e. 40 per cent of disabled people assessed with respect to their educational attainment had an impairment level of “a lot”). Furthermore, there seems to be a lack of data around some protected characteristics with regards to disabilities, such as (i) gender reassignment, (ii) marriage and civil partnership, (iii) pregnancy and maternity, (iv) sexual orientation, and (v) religion or belief.
Numbers of disabled children to transition to adult’s services in the future
We have created a model to capture the dynamics of the transition from children to adult social care for people with disabilities. To design the model, we used prevailing whole population average probabilities. In particular, we used the incidence of disabilities in the general population of 18-year-olds and the percentage of children receiving care. Then, we applied these percentages to the ONS population projections for the number of 18-year-olds in the UK (ONS, 2018), apportioned to England (Stats Wales, n.d.). Lastly, we applied the percentage of individuals receiving continuous care by age groups to capture the fact that not all people will need support every year (DWP, 2022).
Our estimates regarding the number of children affected suggest a rise of 12 per cent from 2022-23 to 2026-27, which is higher than the increase in total population growth. This highlights the growing importance of transitions from children to adults’ services over the coming years.
Disabled people’s perspectives
A literature review was conducted to better understand disabled people’s experiences of social care and identify ways to improve this support. This was done by reviewing the available literature on the topic with the papers included in the review being subject to the following criteria: (i) includes the views of people with disabilities and their experience with social care, (ii) includes qualitative, primary research, (iii) concerns people based in the UK or Europe, and (iv) published within the last 10 years. A limited number of articles were found, which illustrated the lack of literature focusing on the first-hand view of disabled people and their experiences with the services designed to meet their needs. A total of 19 papers were identified which included mostly interviews but also focus groups, surveys, and an online workshop with people with a range of disabilities from a variety of age groups, the majority being adults. The papers were analysed through thematic analysis and the following section sets out the four main themes identified, outlined in order of most to least frequently observed. Direct quotes have been included to further illustrate the lived experience of disabled people.
Delivery and type of support
Type of support
Disabled service users emphasised that social care services should provide practical support including help with transport and finances, emotional support including being able to share worries, and social support including help to maintain friendships (Gridley, Brooks, and Glendinning 2014). For disabled young people transitioning from child to adult services, practical and emotional support was viewed as an essential component of informed choice, but it was emphasised that this group should have space and time to accept the support offered on their own terms (Mitchell 2015).
“…you can talk to them [his personal assistants]…that’s nice sometimes just to get stuff off your chest without, like, not just your mum or whatever…that’s helpful. It’s just being company sometimes.” (quoted in Gridley, Brooks and Glendinning, 2014, p. 13)
At-home and in-community support that disabled people wanted ranged from activities such as watching TV to going for coffee (McCausland et al. 2021). Some disabled people felt services never support their independence; for example, only 27 per cent of those surveyed in a study conducted for Scope stated that services consistently meet their day-to-day living needs. Some also wanted support with employment stating that services are important in helping them work, volunteer, and study (Grayston 2015). Other service users asked for sexual wellbeing to be included in support (Lee, Fenge, and Collins 2020).
Areas where service users felt services were lacking was in the availability of short-break beds and the availability of personnel to deal with their problems (Sutcliffe et al. 2015) as well as a lack of choice of support in rural areas which created barriers to informed choice for young disabled people transitioning from child to adult services (Mitchell 2015). Self-directed support, which is a way of providing social care support thaty empowers individuals to have informed choice about how support is provided to them, received mixed views from disabled people across studies, some service users felt it lacked transparency, accessibility, and flexibility (Kendall and Cameron, 2014) whereas others felt it gave them more control over their support arrangements (SCIE, 2017). Specific to older people with disabilities, a negative relationship was found between the number of social services used by them and the number of unmet care needs. It was therefore suggested that increasing the number of social services and better integrating them with health services would improve this (Bień et al. 2013).
Reliability and flexibility of support
Reliability of social care services was said to be affected by budget cuts in recent years resulting either from austerity (SCIE, 2017) or from the Covid-19 pandemic whereby health needs were prioritised over social care needs (Pearson et al. 2022). Restrictions to budgets and other cost-cutting practices meant service users’ lacked trust in practitioners and local authorities (Kendall and Cameron 2014). Consistency of support was important to disabled service users, but some expressed that their support had become worse, their hours had been cut, and over half felt they did not have enough hours in their care package (Grayston 2015).
“My hours of support have been cut. I’m under a lot of pressure now to cope on my own.” (quoted in Grayston, 2015, p.18)
There were significant negative impacts on those with complex needs where support was unreliable (Gridley, Brooks, and Glendinning 2014). Inconsistency in staff was an issue identified by disabled people and led to expectations set out in care plans not being met (Grayston 2015). Disabled people valued having the same worker or small team delivering their support to build trust and streamline communicating with and accessing services (Gridley, Brooks, and Glendinning 2014).
“It’s kind of stability. You don’t have to explain to someone that, “Oh, can you do it this way?” Because [if] they’ve been there for ages then they already know.” (quoted in Gridley, Brooks and Glendinning, 2014, p. 16)
Flexibility was also as important to service users as reliability (Grayston 2015) in how services operated, in responsiveness to changing needs, and in how funds are spent (Gridley, Brooks, and Glendinning 2014). Disabled service users’ evolving needs, conditions, and aspirations (Grayston 2015) led to calls for imaginative approaches and flexible care pathways (Gridley, Brooks, and Glendinning 2014). Service users valued flexibility of support for their independence and quality of life (Grayston 2015).
Coordination and collaboration
Disabled service users also asked for social care services and other forms of support to be more joined-up (Grayston 2015). For example, service users with dementia felt that there was a lack of communication between services and individual staff (Sutcliffe et al. 2015). The need for better coordination was apparent where disabled people stated they were having to provide similar information to several agencies, and they found this challenging and time-consuming (Grayston 2015). This was reflected by disabled young people transitioning between services who felt that child and adult services do not work collaboratively (Mitchell 2015).
It was suggested that disabled health and care staff could collaborate with services to provide perspectives on both using and delivering social care (Fenney et al. 2022). Other partners, such as disabled people’s organisations, were proposed as being central providers of innovative and flexible support and best placed to support health and care organisations to meaningfully engage with disabled people (ibid).
Consideration of identities
Disabled people called for social care services to consider their identities when providing support. It was suggested that services need to better understand the diversity of identities and experiences held by disabled people as well as how multiple identities can interact with each other (Fenney et al. 2022). Service users often experienced cultural identities to be dynamic and wanted services to facilitate developing more complex identities (Malik et al. 2017) as well as meet basic language and cultural needs (Yeung, Partridge, and Irvine 2016).
LGBTQI+ disabled people stated that they often felt uncomfortable disclosing their sexual orientation or gender identity to care staff, that their LGBTQI+ needs were often not considered within assessments and reviews, and that care staff would sometimes not support them with LGBTQI+ social activities such as visiting bars or maintaining relationships (SCIE, 2017).
“I don't feel confident talking to her about my sexuality because I'm always worried that they might say something. I know they shouldn't but it's difficult.” (quoted in SCIE, 2017, np.)
In order to effectively consider disabled people’s identities when planning social care support, it was suggested that personal budgets could be used to allow users to purchase services that align with their cultural needs (Irvine et al. 2017) as well as more broadly embracing diversity of opinions, challenges, and voices (Fenney et al. 2022).
Having said this, a conflicting study by Larkin et al. (2018) found that service users with intellectual disabilities from minority ethnic groups were satisfied with the cultural appropriateness of their support. Yet, this finding was not treated as a deciding factor for effectiveness of support accessed, as cultural appropriateness was seen to depend on the cultural competency and behaviour of individual key support workers.
Involvement in decision making
Involvement in decision making was also considered important to disabled service users. It was seen as essential to include disabled people in designing and planning health and care systems and ensure that their voices are central to plans from the start (Fenney et al. 2022).
Choice, autonomy, and self-determination were seen to be central in defining independence for service users, however, only 28 per cent of those surveyed in Scope’s study (Grayston 2015) stated that they had ‘complete’ or ‘a lot’ of control in planning their care and some felt that the planning staff maintain too much control. It was also said that care staff will often tell disabled people what they need or offer them limited choices of services (Williams, Porter and Marriott, 2014).
“Me having choice and control, not being line managed by a care manager. My wishes being paramount rather than a budget-led department.” (quoted in Grayston, 2015, p. 25)
Self-directed support was introduced to promote choice and control for service users but received mixed views with some disabled people saying they lost choice and control due to the closing of services and increased reliance on informal support (Kendall and Cameron 2014). However, others stated that choice and control was increased when using direct payments and not with managed services (ibid). Other means of involving disabled service users within decision making included through the use of advocates where users felt unable to argue their case effectively or were anxious or disempowered (Grayston 2015). Particularly for young disabled people transitioning from child to adult service, advocacy was seen as essential for facilitating and enabling them to make informed choices (Mitchell 2015). Direct or indirect negotiations with family and services (Malik et al. 2017) as well as consultation of local communities and carers (Sutcliffe et al. 2015) was suggested for supplementing the voices of disabled people more broadly.
Disabled service users emphasised the importance of tailoring support to their individual, unique, and complex needs (Gridley, Brooks, and Glendinning 2014). They wanted recognition that independence does not mean the same thing for all service users; some viewed independence as a desired goal whereas others felt threatened by it, associating it with loneliness (Larkin et al. 2018). In this way, social care staff getting to know individual service users and having specific expertise in their disability was viewed as increasing the effectiveness of their support (Gridley, Brooks, and Glendinning 2014). It was also said that successful support planning should challenge disabled service users to go beyond their original statements regarding their needs (Williams, Porter, and Marriott 2014).
Some disabled service users emphasised that personal budgets and direct payments can achieve personalisation, but many had not had experience of these (Gridley, Brooks, and Glendinning 2014). Personalisation also encompassed calls for group activities and condition-specific services so as to meet others who understand their complex needs (Gridley, Brooks, and Glendinning 2014). However, for young people with disability transitioning from child to adult services, informed choice can be hindered by the desire to make choices based on what peers have chosen, rather than innovative person-centred choices (Mitchell, 2015).
“…we all understand each other because, although we’ve all got different problems, we’ve all got the same problem.” (quoted in Gridley, Brooks and Glendinning, 2014, p. 13)
Behaviour and attitudes of immediate care staff
A further prominent theme identified within the literature regarded the behaviour and attitudes of care staff with some individuals expressing discontent with their experiences. For instance, some individuals, particularly those who lived in care homes, felt that the care staff they had been in contact with were uncaring, unresponsive and that their complaints would not be taken seriously (Yeung, Partridge, and Irvine 2016; McCausland et al. 2021).
Furthermore, in some papers it was highlighted that disabled individuals had experiences of professionals who had been judgmental and discriminatory in relation to sensitive issues such as gender identity and sexual wellbeing (SCIE, 2017; Lee, Fenge, and Collins 2020). For instance, the majority of individuals that identified as LGBTQI+ did not feel comfortable disclosing their gender identity. Of those who had, many had experienced discrimination because of it (SCIE, 2017). As such, these papers highlighted the need for care staff to be non-judgmental, empathetic, and professional in their approach.
“I think they need to leave their personal opinions at the door. Because the opinions that came out during my experience were so strong.” (quoted in Lee, Fenge and Collins, 2020, p. 12)
However, there were many examples of good practice that were highlighted by participants. Being willing to listen, learn, and spend a lot of time with the person that they care for were traits that were highly valued by some disabled participants (Gridley, Brooks, and Glendinning 2014; Williams, Porter, and Marriott 2014). Other service users emphasised the importance of trust, respect, empathy and understanding (Grayston 2015; Williams, Porter, and Marriott 2014).
Participants also had preferences for how they wanted to be communicated with. For instance, some disabled individuals suggested that communication should be relaxed and enjoyable and that care staff should smile as well as vary the tone and speed of their voice (Badcock and Sakellariou 2022). Furthermore, it was highlighted by some that they would like information about assessments and interventions as this had not been communicated with them before (ibid).
Lastly, participants had different views regarding their relationships with care staff with some disabled individuals described them as friends while others made a clearer distinction between care staff and friends (Gridley, Brooks, and Glendinning 2014); McCausland et al. 2021; Larkin et al. 2018). Of the individuals belonging to the former category, some valued qualities such as friendliness and shared interests in the people that cared for them (Gridley, Brooks, and Glendinning 2014) while others were highly affected when changes were made in relation to who cared for them (Larkin et al. 2018).
“…it’s good to come here and everybody’s so – well, they respect me and I respect them… Staff and the people who use the service. Everybody’s my buddy.” (quoted in Gridley, Brooks and Glendinning, 2014, p. 13)
Barriers to meaningfully engage with support
A prominent issue that arose among participants with disabilities was the barriers they faced to meaningfully engage with support services. One such barrier was the lack of information regarding support. This included not knowing the specific types of support available, where services were located, as well as where to find the information that detailed this (Sutcliffe et al. 2015; Yeung, Partridge, and Irvine 2016; Irvine et al. 2017). Furthermore, some participants expressed uncertainty regarding their eligibility to receive help, which meant that they had to wait until their health deteriorated before they came into contact with social care (Yeung, Partridge, and Irvine 2016; Sutcliffe et al. 2015). The difficulty accessing information may be caused by the participants’ disabilities themselves; for instance, communication and cognitive impairments may make it difficult to find and access information (Gridley, Brooks, and Glendinning 2014).
“I didn’t get in touch with anyone because I didn’t know where to go or how to get help...I didn’t know what I was entitled to.” (quoted in Yeung, Partridge and Irvine, 2016, p. 4)
The problem of accessing information was further exacerbated by language barriers for disabled participants that did not speak English. This made it even more difficult for participants to find and communicate with the relevant services (Liu, Cook, and Cattan 2017; Yeung, Partridge, and Irvine 2016). As one paper details, many services do not have the translation services that are necessary before and after appointments (Liu, Cook, and Cattan 2017).
In some of the cases reviewed, particularly for those that did not speak English, disabled participants became dependent on their personal networks to overcome the barriers to accessing support (Liu, Cook, and Cattan 2017). One paper coined these individuals ‘Bridge People’ and explained that they provide a communication bridge between the service users and providers. However, the reliance on ‘Bridge People’ further entails that disabled participants who have exhausted their network, or did not have one to begin with, or are reliant on someone that does not have their best interest at heart, are all left highly vulnerable (Liu, Cook, and Cattan 2017; Yeung, Partridge, and Irvine 2016).
Some participants also expressed concerns regarding physical barriers to engaging with support, such as some services being inconveniently located and inaccessible through public transport (Liu, Cook, and Cattan 2017). Cultural norms were also seen as a hindering factor for some disabled individuals. For instance, some disabled Chinese interviewees shared that they did not reach out to services when experiencing mental health issues, being influenced by the negative assumptions there can be in their cultural background for people requesting support for their mental health (Liu, Cook, and Cattan 2017; Yeung, Partridge, and Irvine 2016; Irvine et al. 2017).
Recently, additional barriers to accessing services have been experienced during and following the Covid-19 pandemic (University of Warwick, 2022). Research looking specifically at support for individuals with learning disabilities, found that the provision of support available has been removed or reduced significantly compared to pre-pandemic levels. One reason for this has been the difficulty recruiting and retaining social care staff, which has affected all services. The lack of support has adversely impacted people with learning disabilities, as well as their families, many of whom have had to manage care on their own.
Listening to the voice of parent carers
To get a better understanding of the experiences that young people and their families have with social care services, 13 interviews were conducted with parent carers of children and young adults with lifelong disabilities. The group of young people in question needed varying levels of support and had a wide range of mental and physical disabilities as defined under the Equality Act 2010. Specifically, we spoke to six parents of children and seven parents of young adults.
While each family had a unique experience with social care, several recurring themes emerged from these interviews when analysed through thematic analysis. The four themes are outlined below in no particular order and direct quotes have been utilised where appropriate to further illustrate the experiences of those caring for children and young people with lifelong disabilities.
‘Fighting’ for support
Parent carers had a wide range of experiences with requesting and receiving social care support for their children, but the vast majority of these were negative. In relation to service provision, many parents explained that their children had either currently, or in the past, not received sufficient support from social care to meet their and their family’s needs.
For the individual with the disability, this included aspects such as insufficient care packages as well as the type of service available needed to accommodate and support their specific disability. For instance, one parent explained that the service their child needed was provided in their area for adults only and no other alternatives were offered.
Equally important, the lack of support for the families of the individuals with disabilities was frequently related to insufficient and inflexible funding needed to care for their children and to have a short break themselves. Examples of this are that the funding was not sufficient to employ the necessary number of carers, it could not be used to fund other responsibilities that would help take the pressure off the family (e.g., cleaning/nursery cost for sibling), or that funding would be taken away if it was not spent at the correct time.
“I’ve asked before whether I can use the money if I can’t get a PA … to have a cleaner to help me around the house and basically, well that’s not an appropriate use of direct payments. But I’m like, well, we’ve got an underspend that they’ll take away.”
A further frustration expressed by parents was that they had to consistently ask for help, instead of social care services reaching out to them. Some parents described the process as an uphill battle and that they were constantly fighting to attain the necessary levels of support. This also meant that many parents did not feel listened to even if they had made the services aware of their views and experiences. The parents who had particularly difficult experiences explained that support was only made available when their situation turned into an emergency, and they were not able to cope anymore.
“They know how I feel, I tell them all the time, I’m just not listened to.”
“It was difficult to get people to understand, to listen properly and we always coped until I sort of had a hissy fit and a breakdown, and then we became a family in crisis and then we got lots of attention.”
“You fight tooth and nail to get care.”
On the contrary, the parents who received the support that they needed explained that support from services exceeded their expectations. This demonstrated that the provision of support varied both depending on the type of disability an individual had as well as the local authority they were a part of, which some interviewees referred to as ‘postcode lottery’.
Lack of communication, coordination, and consistency
Parent carers reported difficulties finding information about the care available to their family and handling what they felt was a lack of communication from social care. They expressed frustration with both having to find the information themselves, but also with frequently not finding what they needed. For families that received direct payments, some experienced the additional pressure caused by being responsible for the recruitment and employment of carers, which they were not guided through how to do.
“The signposting and available support for people with learning disabilities. It’s just, it’s just not there. And from a parent carer perspective, trying to navigate your way through a legal minefield and what you can and can’t do … and what is and isn’t available… it’s just tough.”
This issue with communication was also described between different services, which created additional confusion and strain on families attempting to navigate the system. This was particularly the case for families with children that had multiple and complex needs who were involved with several different services including health. It was also a frustration during the transition from children to adult services which is described in more detail below.
“It’s just a constant battle between health, education and social as to who’s going to fund what…”
Finally, some parents described an issue in relation to the consistency of support that their child received. Inconsistency occurred for different reasons, such as eligibility requirements changing and support that had been given was later withdrawn. It also took the form of frequent changes of social workers, personal assistants, and other professionals involved in children’s care. This had several different negative impacts. Some parents described that they were tired of consistently having to retell their family’s situation and needs. Others had children with disabilities, such as autism or a learning disability, which meant that they do not cope well with change and that it was negatively impacting their wellbeing. A reason that was frequently quoted to explain this high turnover of professionals was that they were not compensated sufficiently enough considering the work that they do.
“They’re all overworked and probably underpaid.”
‘There was no transition’ to adults’ services’
When parent carers were asked about their children’s past, ongoing, or future transition from children’ to adults’ social care, many expressed that there was no such transition. The transition between these services was primarily a negative experience for the parents whose children had already gone through it, and a worry for those who had it on the horizon.
“…no, there was no transition.”
“…I’ve started asking about this because it’s been very much on my radar, and I’ve been worried… I’ve been worrying about it since he was born.”
Parents described that due to prolonged waiting times, they were informally told to ask for support early, around the time their child becomes a teenager. Despite this some parents still experienced gaps in the provision of support for the young person transitioning when they were left without support from either service for a period of time. Other parents were turned away for requesting help too early.
“The response we often got from the transition team in the local authority was unless there’s a piece of work for us to do now … do it nearer the time.”
A further frustration from parents arose in relation to a lack of information available about the transitioning process. It was difficult for them to find relevant and accurate information and they were frustrated that the onus was placed on them to search for it and request help. Some explained that they would have liked to be guided through the process and have the necessary information communicated to them by the relevant services. This was further exacerbated by a lack of communication and coordination between the children and adults’ services.
“…they’re not aware of what each other are actually working on to enable a joined-up approach to move forward.”
As a result of these negative experiences, which some explained put significant strain on the family, many turned to other sources of support through the process. Such sources included family and friends, other parent carers and parent carer forums, as well as charities.
The difference a person can make
Some parent carers acknowledged the significant positive impact that one individual could have on the families’ experiences with social care during our conversations. They usually described this person as a professional that worked closely with the family and often advocated for the young person to get the support that they needed. One individual explained that the professional’s requests for support were taken more seriously than theirs, which helped them get the care needed.
“I’m profoundly grateful for this person and the impact that they’ve had because it’s made our lives an awful lot easier…”
Service providers’ perspectives
To further understand disabled people’s interaction with social care services, a second literature review was conducted focusing on the perspectives of service providers. This was done by reviewing the available literature on the topic with papers being subject to the following criteria:
- Includes the views of social care staff and their experiences of providing services to people with disabilities.
- Includes primary, qualitative research.
- Concerns people based in the UK or Europe.
- Published within the last 11 years.
The available literature was limited with a total of 10 papers identified and included interviews and focus groups with service providers such as social workers, home care managers, local authority staff, health care staff, paid carers, and day centre staff. Occasionally criteria were compromised where the paper still offered useful insights; for example, one paper focussed on mental health professionals’ perspectives, but this encompassed their views working with social care services. The 10 papers were summarised and analysed through thematic analysis, though due to the limited number of papers, these themes may not be representative of wider service provider views. The following section sets out the four main themes identified which are outlined in order of most to least frequently observed. Direct quotes have been included to further illustrate the experience of service providers.
Coordination and collaboration
The importance of coordination and collaboration within and between services when supporting disabled people was emphasised. Within social care services it was said that a coordinated and multidisciplinary approach leads to proactive responses, preventing crisis situations (Chapman, Lacey, and Jervis 2018). Service providers in one study commented on the importance of record keeping in providing a means of communication between staff such as ‘health passports’ and ‘traffic light’ records (Northway, Holland-Hart, and Jenkins 2017).
Providers also emphasised that feeling part of a team led to greater job satisfaction and those in managerial positions described efforts to foster good relationships (Stevens et al. 2021). Service providers also mentioned that for self-directed support co-production of the design and delivery of support with service users was a key aspect but proved challenging to implement due to a lack of understanding of self-directed support amongst frontline staff leading to a failure to offer choice to service users (Pearson, Watson, and Manji 2018).
Social care service providers also identified that coordinating with other agencies was important (White, Marsland, and Manthorpe 2019). Integration of social care and health care was discussed, but variation in how this has been implemented in different local areas was identified (Pearson, Watson, and Manji 2018). Some staff in both sectors were positive about the new relationships formed and others recognised that longer-term changes in values and a cultural shift in working practices were needed (ibid). Another important relationship identified was that of social care and mental health services, though service providers felt these services have a lack of joint working with particular detriment to young people with mild intellectual disabilities and autism spectrum disorder (Kaehne 2011).
Service gaps were identified regarding the planning transition between child and adult services with mental health professionals highlighting the need for comprehensive care and support packages and transition partnerships to be developed (ibid). Other agencies that providers felt social care should coordinate with included health practitioners, third sector agencies, and care agencies, especially when disabled service users are moving from one local authority to another and where local authorities have ‘different ways of doing things’ (White, Marsland, and Manthorpe 2019).
“We [mental health services] still come up against cases where you know we might make a referral to social services, looking to the family accessing support from either the community living team or from the children with disabilities team and they wouldn’t access either […] they don’t access a service because they [social services] feel that this kid does not fit the criteria.” (quoted in Kaehne, 2011, p.13)
Providers also felt that information sharing was crucial when delivering social care services to disabled people (White, Marsland, and Manthorpe 2019). It was suggested that integration between health and social care would facilitate this (Bhaumik et al. 2011), but mental health professionals felt that the exchange of data between mental health services, health care professionals, and social workers was poor leading to a decreased likelihood of a smooth transition from child to adult services (Kaehne 2011). These service providers highlighted a lack of awareness of transition planning groups and eligibility criteria, as well as no multi-agency joint working, having negative effects for service quality and exacerbating gaps (ibid). Information sharing from social care services to disabled people’s families was also deemed important, but some staff stated that family carers and relatives are not always provided with relevant information (Furniss et al. 2012). Service providers felt that family can provide different perspectives and useful information about the service user (Chapman, Lacey, and Jervis 2018), but can conflict with the disabled person’s perspective (Hultman et al. 2019).
The role of service providers
An equally commonly mentioned theme within the literature was where service providers discussed the role of staff. Service providers encounter a variety of needs which they are involved in recognising, monitoring, and meeting (Northway, Holland-Hart, and Jenkins 2017).One paper discussed factors relating to the retention of social care staff, pointing to the value of training and the importance of maintaining morale through showing appreciation, but named low pay resulting from austerity as a key issue for the retention of care staff (Stevens et al. 2021).
A common experience amongst service providers within the literature reviewed was feelings of uncertainty and a lack of confidence in decision making; specific examples being i) where care staff were unsure of when and to what extent to involve disabled children within decision making, and ii) feeling insecure in their own competence in interpreting and using alternative forms of communication for users without access to oral speech (Hultman et al. 2019). This lack of confidence would also mean that service providers felt unable to offer certainty to service users (White, Marsland, and Manthorpe 2019). The issue of not knowing, a lack of information, and being unsure when to ask for help was emphasised by service providers (Furniss et al. 2012) and demonstrated the need for training to help staff feel supported, less anxious, and better able to cope which in turn improves the support service users receive (Chapman, Lacey, and Jervis 2018). Additional training and ‘top tips’ sheets were said to have improved staff confidence and quality of care, though difficulties in creating resources to fit everyone’s needs was identified (ibid).
“The top tips sheets have been quite a clear structured way of giving people ideas about kind of managing particular challenges. I think the challenging behaviour one got quite good feedback in particular and also the communication one as well.” (quoted in Chapman, Lacey and Jervis, 2018 p.37)
In research speaking with service providers in residential homes for those with learning disabilities, staff valued having support and spoke about the emotional strain of dealing with sometimes challenging behaviours (e.g. night waking or verbal aggression), as well as coming to terms with loss such as planning for a service users death or funeral (Furniss et al. 2012). Providers in managerial positions expressed different concerns relating to their work such as limits to their ability to terminate care staff who underperform or have communication problems with service users (Löve, Traustadóttir, and Rice 2018). Some of these providers commented that they felt they had no choice but to terminate the contracts of all staff in these situations (ibid).
The value of relationships with service users and getting to know individuals to identify and meet care needs was highlighted by service providers (Northway, Holland-Hart, and Jenkins 2017). There was nonetheless a recognition of the importance of boundaries within these relationships and care staff referred to specific organisational policies designed to protect both tenants and staff when discussing this (ibid). In order to maintain these relationships service providers felt continuity of care staff was crucial (ibid) as well as employing approaches such as providing reassurance, discussing anxieties, and maintaining contact (White, Marsland, and Manthorpe 2019). Continuity of care staff also proved helpful when liaising with other agencies so that there is a named person to contact and a long-term working relationship (Northway, Holland-Hart, and Jenkins 2017).
Meeting service users’ needs
The literature also referred to service providers’ ability to meet the needs of service users. Some service providers mentioned that the amount of support provided to users is currently insufficient with providers sometimes finding it challenging to judge what should be considered a reasonable amount of support (Hultman et al. 2019). This was demonstrated by one study that found that half of surveyed carers for teenagers with intellectual disabilities transitioning from child to adult services felt that they needed but were not receiving adult services and had difficulties accessing support during this time (Bhaumik et al. 2011). Some local authority workers cited a failure of staff to offer choice to care users, specifically in the case of self-directed support (Pearson, Watson, and Manji 2018).
Barriers to accessing support identified by service providers included a lack of integration between social care and health care leading to delays in accessing health services for those with intellectual disabilities (Northway, Holland-Hart, and Jenkins 2017). Other barriers included long-term reductions in social care budgets (Pearson, Watson, and Manji 2018), service users’ families acting as gatekeepers (Chapman, Lacey, and Jervis 2018), and distance from services (White, Marsland, and Manthorpe 2019). Challenges faced by disabled service users when moving from one local authority to another were also identified by providers; for example, where the person moving might be assessed as ineligible for support in their new local authority (ibid).
“We have no influence over the way another local authority manages their resources.” (quoted in White, Marsland and Manthorpe, 2019, p.384)
Developing relationships with service users and ‘knowing the person’ was important to service providers in order to identify and meet needs, especially in the case of recognising changes in needs (Northway, Holland-Hart, and Jenkins 2017). Providers identified that moving from one local authority to another can catalyse a change in needs for disabled service users and they highlighted the importance of monitoring and reassessment in these cases (White, Marsland, and Manthorpe 2019). Some providers felt a named key worker from social services would be beneficial in child to adult services transition planning and support throughout the process (Bhaumik et al. 2011). One such need susceptible to change was that of suitable accommodation where service providers would often support disabled people staying within their own homes (Northway, Holland-Hart, and Jenkins 2017), but would inevitably encounter barriers such as the physical environment, availability of 24-hour support, budgets, and concerns over safety resulting from changing needs over time (Chapman, Lacey, and Jervis 2018).
Lastly, the theme of promoting autonomy for disabled service users was identified within literature exploring service providers’ perspectives. Autonomy can support personal development for disabled service users, which often led to satisfaction for providers who described feelings of fulfilment when supporting a disabled person to develop autonomy at home or engage in activities in new physical environments or social situations (Stevens et al. 2021).Service providers identified a common perception that accepting publicly provided services implies having to accept a loss of autonomy and those in managerial positions spoke about taking steps to address this (Löve, Traustadóttir, and Rice 2018). In this way, service providers recognised the right for service users to have their voices heard and felt that providing users with choices promoted this (Löve, Traustadóttir, and Rice 2018).
“You have to use every opportunity to remind staff and keep emphasizing the message at staff meetings: ‘He is supposed to have something to say about his own life’.” (quoted in Löve, Traustadóttir, and Rice, 2018, p. 201)
There were differing views on how far the right to autonomy extended with some providers expressing concerns that cognitive impairments could prove a barrier to autonomy (Löve, Traustadóttir, and Rice 2018). Other barriers included where local authority workers and disabled people’s organisations felt there was a failure of staff to offer choice to service users (Pearson, Watson, and Manji 2018) and, particularly in the case of children, where social workers did not always trust in the ability of service users to make informed decisions (Hultman et al. 2019).
Promoting participation for children within social care services was perceived as difficult to accomplish with the meaning of participation varying amongst staff; for example, the extent to which children were involved varied from the child simply being present in the meetings to being actively involved in discussions (ibid). Service providers felt that balancing between children’s rights to participate and their judgements of children’s abilities, perceptions of normality, and conflicting perspectives was challenging (ibid).
In addition to the literature review, two interviews were conducted with professionals involved in the delivery of services to disabled people at local authority level, in two different local authorities in England. While the views of two people cannot be representative of the sector, these are presented here to supplement findings from the literature review with expert experience.
Lack of resources
The two professionals described the processes and services that they and their organisations have in place to ensure that individuals with lifelong disabilities receive the care that they need when they are referred to them. They described themselves as dedicated and determined to provide all necessary support to their clients. For instance, one interviewee outlined that they have good training packages available to staff and attend weekly meetings that enable them to pick up referrals quicker. However, both interviewees described a lack of resources as a significant barrier to providing support, sometimes substituted with their personal efforts.
“We do everything that we can.”
The primary reason for the lack of resources was due to understaffing and underfunding, both identified as significant problems. If cases need to be prioritised based on need due to not being able to meet demand, this can have an adverse impact on service users and their families, who already have a lot to process. It was also mentioned that, due to aspects such as funding, not all areas are able to provide all services and thus may not meet all needs service users present.
“It is very difficult in itself [for a service user] to come through the care system.”
Transitioning into adults’ social care
The discussions made emerge the differences there are between the services offered to children compared to those aimed at adults. One critical element of these is that while services for children are free, adults may have to pay a contribution. It was emphasised that especially people who have been receiving support for free for most of their underage life may think that this service set up will continue for the entirety of their lives. It was stressed that this difference in services should be highlighted to people at the transition stage, especially considering that some people may not be able to pay a contribution, or that they may need help in managing their finances to do so. The financial assessments made to decide upon the subsequent contribution for service users to pay is also a different experience within adult social care that may impact people’s satisfaction with services and, at times, also the acceptance of support or the level of support offered to them.
The age of transition was also a key consideration in our discussions with professionals. They mentioned that while there may be a certain age where the young person is expected to start getting prepared for their transition before they reach the age of 18, when they have to be supported by adult services only, this process is not always initiated as early as planned due to lack of capacity within relevant teams on both ends of social care (children and adults). It was also acknowledged that there are services the level of support of which cannot be replicated for adults; e.g. when transitioning from children and adolescents’ mental health services (CAMHS) to adults’ mental health services (AMHS).
To help service users navigate their transition and make sure all options and information are made known to them on time, two good practice examples were shared:
- Having an allocated worker co-ordinating the handover of services between the children and adults’ services, so that the young person is never left without receiving support.
- Making known to service users the differences in the services and what to expect of them well before they transition to adults’ provision.
The difference a person can make
As in interviews with parent carers, professionals acknowledged the subjective aspect in receiving social care support, whether as a child or an adult. This subjective aspect was mainly referred with regards to the needs of the disabled person and the level of support suitable for them, whether they have any family to support them as well as the social care staff working with them.
Particular reference was made to having family members who can advocate for the person’s needs. It was acknowledged that proactive families can secure better services and opportunities for the disabled person, whereas this can be difficult for someone without a family to act as such. Especially for disabled people who do not have the capacity to live independently, social care services depend on the collaboration of the family (where there is one) for providing services.
Finally, interviewees reflected on the impact the intensity of their work as well as their drive to go at great lengths to secure the services and care plans needed for service users can have on them. As one professional mentioned:
“Some cases get under your skin… they stay with you forever.”
As already identified by some of the parent carers interviewed, the determination of one support worker can play a remarkable role in the services or the care package that can be made available to disabled people. Listening to the two professionals, it was sensed that at times they also felt the need to advocate for the users they work with, as sometimes accessing the support needed cannot be made possible otherwise.
“It depends on the need, it depends… Sometimes it depends on the worker as well.”
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