Research into the skills and competencies required by staff working with people with learning disabilities has concentrated on staff views. The purpose of this paper is to explore what people with learning disabilities want from the workforce supporting them. The evaluation was commissioned by Health Education England working across Kent, Surrey and Sussex (HEE KSS).
An easy read questionnaire, co-produced with people with learning disabilities, was completed with 70 participants, 65 of whom attended one of 10 workshops. Two questionnaires were also completed by parents on behalf of their child. The workshops also allowed for open discussion.
People with learning disabilities value a workforce with a positive attitude, with staff who are skilled in supporting people to gain independence and have a voice.
Findings are relevant to staff recruitment, matching of staff to services and staff training.
Although there is some previous research around service user views, this evaluation had a larger sample size. The findings were similar to previous studies, particularly around the kind of qualities required from staff, which were the ability to listen, have trust and be able to learn specific skills. Although the highest representation was from young people and young adults, participants ranged from 12 to over 65 years. Differences in views according to participant age ranges are also noted.
Davies, J. and Matuska, G. (2018), "Workforce development: perspectives from people with learning disabilities", Tizard Learning Disability Review, Vol. 23 No. 4, pp. 165-172. https://doi.org/10.1108/TLDR-04-2017-0018Download as .RIS
Emerald Publishing Limited
Copyright © 2018, Emerald Publishing Limited
This paper summarises a consultancy project commissioned by Health Education England working across Kent, Surrey and Sussex (HEE KSS). Health Education England is the national leadership organisation for education, training and workforce development in the health sector. The aim of the project was to gain the opinions and perspectives of individuals who have learning disabilities on the skills and qualities they seek in the workforce who support them.
Most of the research regarding the skills staff need to work with people with learning disabilities has explored professional, support staff and management perspectives (Hatton et al., 2009; Clarkson et al., 2009). There are a small number of studies which have looked at what is important to people with learning disabilities. The Stay Up Late (2016) campaign undertook work with their reference group to find out what made a good support worker. They reported that a good support worker helps, talks and listens, has a good sense of humour, supports people to be independent and keeps the person informed. In other studies, service users valued qualities relevant to good relationship building, specifically honesty, a caring nature, nurturing qualities and calmness (Clarkson et al., 2009; Dodevska and Vassos, 2013), whereas for staff and managers, specific knowledge and practical work skills were deemed as most important.
During the past few decades there has been an increase in people with learning disabilities’ involvement in the recruitment of staff, as recommended in Valuing People (Department of Health, 2001). This involvement can range from sitting on an interview panel, being part of a service user panel or accompanying candidates on a tour of the service. In order to support people to make decisions about the most suitable candidates, some organisations have asked people with learning disabilities to focus on specific areas, such as the qualities desired by service users for a particular post. For example, Hurtado (2014) described the process of recruiting to a psychology assistant post with the engagement of people with learning disabilities. As the service users found it difficult working with open-ended subjects, the author developed a forced choice questionnaire with a focus on asking questions about the personal characteristics of potential candidates.
The aim of the current project was to explore the views of people with learning disabilities on the skills and qualities they require from the workforce who support them.
The consultation took place across Kent, Surrey and Sussex in South-East England. Drawing on previous research, both the personal characteristics and skills and knowledge of the workforce needed to be explored. A mixed methodology was implemented, comprising of a series of workshops incorporating an easy read questionnaire, along with discussions on what people valued most. Workshops were planned in order to reach as many people as possible in a given timeframe. The questionnaire was divided into two sections. Demographic data was collected to ensure the inclusion of a cross section of people across a range of ages, ethnic backgrounds and support received. The second section had a focus on the skills and qualities required from the workforce, as suggested above by Hurtado (2014). A total of 14 skills and eight qualities were included in the questionnaire. This list was not exhaustive but it provided the participants with concrete examples of what might be important. The workshops included discussions about what good care and support looks like to enable the participants to complete the questionnaires based on their own reflections.
A total of 72 (44 males and 28 females) people took part in this consultation. To capture the views of people with more complex learning disabilities, individual interviews with two parents whose children had complex needs took place, using the questionnaire to facilitate conversation.
Participants’ ages were classified into the following groups: 12–24; 25–34; 35–44; 45–54; 55–64; 65 plus. It was not possible to calculate the mean age because some participants were unsure of their age. Over half of the participants were from Sussex (37), as compared with Kent (18) and Surrey (17). This was due to a school in Sussex arranging for two classes to take part in the consultation workshops.
The majority of the participants were members of seven groups and organisations that took part in the consultation. They ranged from a school, self-advocacy groups and a day service. Some people completed the questionnaire by post.
This project was an evaluation rather than research, as it was a consultancy project carried out on behalf of HEE KSS. Ethical approval was not required for this consultation process, however easy read information about the project was sent to each group in advance of the workshop and people could make their own decision whether they wanted to attend. During the workshops participants were told they could leave at any time. Regarding the school that took part, the deputy head teacher sought parental or legal guardian permission for each student. At the end of the project, easy read summaries of the final report were sent to all groups.
The easy read questionnaire was co-produced with two consultants with learning disabilities who had extensive experience in making information easy to understand and were experienced in evaluation. It was piloted with a small group of people with learning disabilities, after which major changes were made.
Ten workshops were held. There was a set structure, adapted to meet time constraints and the abilities of the participants. The groups lasted from one hour to two and a half hours. The core components of the workshops comprised of:
a discussion of what bad and good support looks like;
exploration of the skills and qualities required of the workforce;
completion of the questionnaire; and
at the end of the session, people being asked to name their top three most important skills and two most important qualities.
This order was used consistently in each workshop as the components set the context and built the participants’ knowledge on the key issues being addressed. A range of communication aids were used during the workshop to help understanding, further enhance the flow of conversation and assist with word finding. These included role plays, images of specific and relevant job roles and a visual voting exercise.
Questionnaires was collected at each workshop and some were sent by post. Notes were taken during each workshop and interview and later typed up and anonymised.
Data from the questionnaires was used to calculate the most frequently sought skills and attitudes. Further analyses were made by participant age. The notes from the workshops are summarised below. However, further interpretive analysis was not conducted due to resource constraints.
Skills required from workforce
The results from this consultation (Table I) demonstrate that people were very keen to learn a range of practical skills to lead as independent a life as possible. This was particularly important to the younger age groups. One young person commented:
I want to learn to drive as then I can be more independent.
Support for learning to cook, finding a job, using public transport and having more control over finances were consistently mentioned, especially amongst those aged 44 years and younger. The 12–24 age group had lower scores for support with medication (31 per cent) and health needs (28 per cent). Support to use technology was the least important (24 per cent) but many participants were already proficient in using social media.
Again, it was those aged 44 and under that talked about the need for positive risk taking to learn such skills, and a few people described how they had lost some skills due to the risk-averse culture of the home where they lived. Parents felt it was detrimental to their son/daughter’s independence if they were supported by people who lacked the knowledge to encourage and motivate people to maintain or learn skills.
For those aged 44 years plus, the most important skills were focused on health, accessing leisure and the community and keeping in touch with family and friends. Regarding health, those people using medication or with known health problems felt it was very important to be supported by knowledgeable staff and practitioners. They wanted professionals to be experts in their area, as described below:
I need help with many things and need to see different doctors who are expert in what they are helping me with. Should have the best, shouldn’t I?
Being supported by staff to keep in contact with friends and family was extremely important to the participants. As described by one participant:
I want to do more things, go shopping with friends.
Everyone aged 35 years and above said they needed help with this, yet it was not seen as so important to the younger participants. A possible reason for this is that most of the younger people were living in the family home so had immediate access to their family and some friends. In addition most of the young people taking part had the technology skills to use online forums such as Facebook or Instagram to keep in touch with friends and family. Those who were older and had not been taught to use computers and technology at school were unable to keep in contact with their families in this way.
When asked to list the three most important overall skills, having support to learn to use public transport was the highest scoring desired skill (35 per cent), followed by learning to cook (29 per cent), looking after health needs (27 per cent), keeping in touch with friends and family (25 per cent) and support with budgeting (25 per cent), as shown in Figure 1.
Qualities required from workforce
The most popular qualities chosen from the questionnaire were: look at me/listen to me (77 per cent); be patient (75 per cent); and happy and positive attitude (72 per cent). When asked to verbally choose their top two qualities, a happy and positive attitude was the most important (50 per cent), followed by letting people speak up for themselves (29 per cent) and listening to them (25 per cent), as shown in Figure 2. There was a consensus amongst all age groups, therefore no further analysis by age was required.
Other qualities that were not given as options on the questionnaire emerged during the workshops as being important. These included: keeping promises, encouraging independence, boosting confidence, and having someone with the ability to look beyond the disability to “recognise you as a person and not just your disability”. Some other qualities were explored in more detail as discussed below.
Communicating effectively was seen to be highly important by many of the participants. The quote below is from a person who can understand verbal requests providing that people slow down when speaking and that they give visual cues:
He says things to me in stages – not all at once. The old staff didn’t say things in stages. The new staff do and have a board to write things on and put pictures on.
A parent spoke about the link between behaviour and communication:
Communication skills are very important – being able to understand my son’s signing, understanding and reading him in each situation so they can prevent and diffuse difficult situations.
As well as being able to communicate effectively with people with learning disabilities, it was also important to be able to communicate with the family and others supporting the person. One parent commented:
Communication is a huge issue – to be able to communicate with people with learning disabilities, family and carers, and share their knowledge across the team supporting the person.
Having a workforce able to keep a promise and having trust in those who support them was a recurring theme during the workshops. It was clear that people had often been let down by those supporting them or by the organisations providing support. One lady described how she made an appointment at a new beauty salon on a day when her support worker was allocated to work with her. However, the support worker was unwell and the message did not reach the agency in time for a replacement. She said:
I was too nervous to go by myself.
It emerged through the discussions that humour was important in the relationship with support staff. One person described how her supporter used humour to help learn a new task as it kept her motivated:
She knows how to make me laugh when I’m trying to do something new and it stresses me out.
Parents also highlighted that having a sense of humour helped them in their caring role and in their relationship with their children. One parent, speaking on behalf of their child stated that the workforce:
[…] need to have a sense of humour, particularly to deal with certain situations when out with the public – people need to be thick skinned and be ok to be the centre of attention if they go somewhere and an incident occurs.
This study differs from previous research (Hatton et al., 2009; Dodevska and Vassos, 2013) in that lists of specific skills and qualities were provided to the participants in the questionnaire with the opportunity for the participants to highlight other relevant skills and qualities during the workshop. These lists were devised and tested by adults with learning disabilities.
Previous studies by Clarkson et al. (2009), Stay Up Late (2016) and Bee et al. (2008) indicated that interpersonal skills were considered of high importance by service users. The participants from this study emphasised that support staff need to listen to people with learning disabilities, be able to be trusted and to have a positive attitude. Participants felt that these qualities should be inherent in everyone supporting a person with a learning disability – from a medical consultant or GP through to job coaches and personal assistants.
The importance of support staff having practical skills is also consistent with other research, as highlighted by Clarkson et al. (2009), who reported that direct support has both emotional and practical elements. This evaluation provides more detail on the specific skills and qualities than previous findings as it involved a much larger group of participants and provides variations according to age of participants.
Support with medication and health needs were considered important for all age groups, except younger people. Reasons for requiring support with health may include matters related to syndrome-specific conditions and an increased prevalence of both some physical and some mental health conditions (Grant, 2010). Adults with learning disabilities are also at higher risk of poor health relating to factors such as exercise, diet and socio-economic status (Bigby, 2010).
Application to practice
Key qualities identified included being “happy and having a positive attitude” and “letting me speak up for myself”. This implies that health and other staff are likely to be seen more positively if they have a positive outlook and provide opportunities for people with learning disabilities to express their views, providing good information to individuals and communication support as required.
These findings could also inform recruitment practice and matching of support staff to work with particular individuals. In looking at the findings, employers can assess if their recruitment process allows for the assessment of the skills and qualities highlighted as most important for people with learning disabilities. Do their application forms, testing procedures and interview questions assess for skills in supporting people to understand their health needs and care, to gain greater independence, to access leisure facilities, to make new friends and maintain relationships with existing friends, to be able to visit and spend time with their families? Are marks given for personal qualities deemed important in staff – having a happy and positive attitude, a willingness to work with people rather than doing for, and an ability to listen to people and to allow them to speak up for themselves? How much weight is placed on these skills and qualities during the recruitment process compared to other factors such as qualifications, physical presentation, knowledge of learning disability and experience?
This evaluation also highlighted the importance of staff being able to teach new skills (of various kinds) to people with learning disabilities, a capacity that staff may not routinely have.
The evaluation had a number of limitations. The lists of skills and qualities included in the questionnaire were inevitably limited though workshop discussion allowed time to discuss what other skills and qualities were considered important. Time was a factor in some workshops, so information was collected as a group, except for the skills and qualities sections, which were always completed individually.
The substantial variation between the groups may reflect their age and settings. It cannot be assumed that, for example, all 12–24 years olds want the same thing. The groups included people from schools, day services, supported living housing, self advocacy groups and charities, which resulted in a large age range (12 to over 65 years) with the largest group in the 12–24 age range. In light of this, responses may have mainly been drawn from experience with educational and social care staff and reflect more limited experience with health staff. However, during the workshops examples of different types of staff were shown and discussed, including medical practitioners. As people with learning disabilities are more likely to experience additional conditions than the rest of the population, and perhaps medical issues specifically relating to their condition, it is likely that even the younger participants will have had some experience of health care staff. However, further research into the skills and qualities of specific job roles, in particular health staff, is needed.
This evaluation incorporated elements of a participatory qualitative research process which promotes “conducting the research process with those people whose life-world and meaningful actions are under study”, (Bergold and Thomas, 2012, p. 1) but a more in-depth analysis of the qualitative data collected was not possible.
People value a workforce who are patient and kind, have a positive demeanour and ensure the people they support are given a voice. The workforce need to be experts in their area of speciality, which should include understanding health needs (both physical and mental), making connections with family and the local area and encouraging people to be more independent. The variation of the skills required by the various age ranges has implications for the workforce so services need to be aware of these, so they can tailor the support they offer. People had high aspirations and education, health and care providers need to address this.
HEE KSS continues to support the workforce that supports people with learning disabilities through its local programme as well being a partner in the national Transforming Care Programme and the Sustainability and Transformation Plans. The report arising from the current project has fed into the local work going forward and the evidence presented will ensure that issues are considered across the life span and different parts of the workforce.
Five most commonly required staff skills by age group
|Age group (years)||Skill||Percentage|
|12–24||Support to use public transport||66|
|Support to manage money||52|
|Find the right home to move into||52|
|Help prepare snacks and meals||52|
|Finding a job||41|
|25–34||Understanding health needs||75|
|Support in using medication||75|
|Support to keep in touch with friends and family||75|
|Support in accessing leisure activities||75|
|Learning to use technology||75|
|35–44||Understanding health needs||100|
|Support to keep in touch with friends and family||100|
|Support to be part of the local community||89|
|Support in accessing leisure activities||89|
|Support to use public transport||89|
|45–54||Understanding health needs||100|
|Support in using medication||100|
|Support to keep in touch with friends and family||100|
|Support to be part of the local community||83|
|Support with personal care||83|
|55–64 years||Understanding health needs||100|
|Support to keep in touch with friends and family||100|
|Support to be part of the local community||100|
|Support in accessing leisure activities||100|
|Support in using medication||67|
Bee, P., Playle, J., Lovell, K., Barnes, P., Gray, R. and Keeley, P. (2008), “Service user views and expectations of UK-registered mental health nurses: a systematic review of empirical research”, International Journal of Nursing Studies, Vol. 45 No. 3, pp. 442-57.
Bergold, J. and Thomas, S. (2012), “Participatory research methods: a methodological approach in motion [110 paragraphs]”, Forum Qualitative Sozialforschung/Forum: Qualitative Social Research, Vol. 13 No. 1, Art. 30, available at: http://nbn-resolving.de/urn:nbn:de:0114-fqs1201302 (accessed December 2017).
Bigby, C. (2010), “Growing old: adapting to change and realizing a sense of belonging, continuity and purpose”, in Grant, G., Ramcharan, P. and Flynn, M. (Eds), Learning Disability: A Life Cycle Approach, McGraw-Hill Education, Berkshire, pp. 445-7.
Clarkson, R., Murphy, G.H., Coldwell, J.B. and Dawson, D.L. (2009), “What characteristics do service users with intellectual disability value in direct support staff within residential forensic services?”, Journal of Intellectual and Developmental Disabilities, Vol. 34 No. 4, pp. 283-9.
Dodevska, G.A. and Vassos, M.V. (2013), “What qualities are valued in residential direct care workers from the perspective of people with an intellectual disability and managers of accommodation services?”, Journal of Intellectual Disability Research, Vol. 57 No. 7, pp. 601-15.
Grant, G. (2010), “Health and successful ageing”, in Grant, G., Ramcharan, P. and Flynn, M. (Eds), Learning Disability: A Life Cycle Approach, McGraw-Hill Education, Berkshire, pp. 475-87.
Hatton, C., Wigham, S. and Craig, J. (2009), “Developing measures of job performance for support staff in housing services for people with intellectual disabilities”, Journal of Applied Research in Intellectual Disabilities, Vol. 22 No. 1, pp. 54-64.
Hurtado, B. (2014), “The importance of being earnest: our experience of involving service users with complex needs in staff recruitment”, British Journal of Intellectual disabilities, Vol. 42 No. 1, pp. 36-42.
Secretary of State for Health (2001), Valuing People: A New Strategy for Intellectual Disability for the 21st Century, CM 5086, The Stationery Office, London.
Stay up late (2016), “What makes a good and bad support worker?”, available at: http://stayuplate.org/support-worker-makes-good-one/ (accessed 10 December 2018).
The consultation was funded by Health Education England working across Kent Surrey and Sussex, and conducted by the Foundation for People with Learning Disabilities. The authors are very grateful to the people with learning disabilities and the organisations who took part to Christine Burke at the Foundation and to Joanne Morrison for her assistance in writing the paper.
About the authors
Jill Davies is based at Bromley Adult Learning Disability Team, Oxleas NHS Foundation Trust, Sidcup, UK.
George Matuska is Clinical Lead – Intellectual Disability, South of England, Health Education England, Dover, UK.