Listening to the voices of people with learning disabilities

Some of us are lucky enough to experience times in our jobs when it doesn’t feel like work because we are having so much fun. One of these times in 2016 was when I spent time undertaking work for Health Education England working across Kent, Surrey and Sussex (HEE  KSS) to find out what people in the region with learning disabilities thought about their care in order to inform HEE KSS’s intellectual disability programme.

During the course of the project my colleague Christine Burke and I visited seven groups, in total we spoke to 70 people, with ages ranging from 16 to over 65 years, including a few parents who had sons/daughters with complex needs and were unable to talk about their requirements of the workforce themselves. 

From my own and other’s experience – simply asking open ended questions around abstract concepts can be very difficult for people with learning disabilities to grasp. So in order to facilitate discussion during the focus groups, we co-produced an easy read questionnaire with two consultants with learning disabilities. Our discussions led us to think about two key areas that people look for in the workforce – their attitudes or qualities, and their skills. 

We discovered that there was much consistency in the most important qualities required of the workforce, even accounting for the differing age ranges (if you would like to find out more please read our report Workforce development for people with learning disabilities). Having a happy and positive attitude was by far the most important quality required to support people, followed by giving people a voice and paying attention to them. Another valued quality from the workforce was the need to keep a promise, and sadly we heard a number of stories when this wasn’t delivered.

As for the skills required in the workforce, there was a greater variation, particularly when taking into account different age ranges. When asked to vote for the most important skills required of the workforce the highest scoring were being taught to use public transport, followed by learning to cook and having staff with knowledge of the person’s health needs. The results probably reflect the greater number of young people we consulted with, as opposed to older people.

Younger people were striving for independence – they wanted to learn to use public transport, followed by managing money, getting help to move into their own home and learning to cook. Interestingly, keeping in touch with friends and family and looking after health needs did not score high for this group, possibly because most of them still live at home and their health needs are still being addressed by their family. 

I was also surprised that having a skilled worker to find people a job did not score as highly as other skills and can only surmise that the actual number of people with learning disabilities in paid employment is so low (the latest figures report 5.8%) that to most people getting a job is nothing short of a dream. One person I spoke to had worked in retail a few years ago but due to the financial climate lost his job.

Another person I spoke to had been offered a paid job but the care provider had told him it was not possible because he would lose his financial benefits. For people aged over 45, they were more concerned about having their health needs looked after along with accessing the community and keeping in touch with family and friends, which reflects their age and the fact that most of this group were living away from the family home.

This work has shown us that we need a workforce who hold positive attitudes about people with learning disabilities as being equals, and who bring specialist skills that can help people attain independence, remain healthy and keep connected with their family and the local community. 

Younger people have different needs to those who are older, so providers and services need to be aware of these so they can tailor the support they offer. People also spoke about the need for positive risk-taking in order to learn such skills, and a few described how they have lost some skills due to the risk-averse culture of the home they lived in. The parents we spoke to felt it was detrimental to their son/daughter’s independence if they were supported by people who lack the knowledge in how to encourage and motivate people to maintain or learn skills.

One of the key messages from all consultations is how valued people with learning disabilities felt when they had a voice. As a manager from one of the services we visited said:

“Every supported individual who participated in the consultation really enjoyed taking part and found the process to be very rewarding.  They responded very positively to both being asked what was important to each of them as individuals and having their opinions listened to.  They were discussing their meetings with you for quite some time afterwards!”

Although this is a lovely quote, it is also a concern – does it mean that people with learning disabilities are still not being heard and not being given opportunities to influence services funded to support them? Our recommendation, in our report, is that all workforce curricula have values (based on the social model of disability) input delivered by people with learning disabilities, otherwise, I worry their voices will continue to be unheard.