Four challenges people face living with learning disabilities
Healthwatch England investigated the care stories people have shared with our network to identify the four common challenges they face accessing support.
Moving between services
Every year, thousands of children transition from children to adult learning disability services. The transition is challenging for young people and their families or carers as they often struggle to access support when they turn 18.
Healthwatch Richmond upon Thames shared several stories from parents and carers of people with learning disabilities, who meet regularly to discuss the difficulties in transitioning from child to adult services.
The parent of an 18-year-old with a learning disability told us that he lost support during the pandemic and, since turning 18, is no longer supported to access his vocational education. Another parent said there was no support for their child to develop vocational skills, preventing them from becoming more independent.
We heard about the lack of integrated working across health and social care, including social workers who weren't aware of different services and couldn't provide support about how to access health services. They felt that the lack of integration particularly affected people between the ages of 16 and 18, leading to isolation and unmet needs.
They shared their frustrations about how hard it was to find information about support in their area. They suggested that a flowchart of available services should be created to help parents and carers navigate their children’s care and support, which could also help to show where there are service gaps.
We heard from a woman who made a referral for a young girl with autism, a learning disability, and anxiety who is not leaving the house or attending school.
“The referral was declined and advised to go to GP. I work for a mental health service, and we are working on her anxiety; however, she needs social care support, and without that, her progress will be limited" - Story shared by Healthwatch County Durham
People also shared with Healthwatch about the lack of support to complete official paperwork, including financial support for their housing.
Services closing
Factors, such as pressures on local authority budgets, has led to the number of people benefiting from respite care falling from 57,000 in 2015/16 to 36,000 in 2022/23. Finding respite care, including carer’s breaks, is a struggle, with professionals highlighting the shortage of services and how much it affected the lives of the parents and carers they work with.
We also heard from support staff caring for a person with learning disabilities and cancer. They were trying to get them access to an advocacy service, but the service they’d used previously had closed.
A parent and carer of their daughter, who has severe learning disabilities and autism, shared with us how the day service provision has been affected by a lack of staff.
“She currently attends the day service provision […] and has done so for the last six years. Since COVID, the service has suffered a high turnover of staff and lack of staff which has meant that the activities provided have either become very repetitive or greatly reduced. […] Unfortunately, there is only one option for day service provision in the borough.” - Story shared by Healthwatch Windsor, Ascot and Maidenhead
Social life
Severe mental health conditions are 8.4 times more common in patients with a learning disability. That’s why it’s essential for people with learning disabilities to have a form of social interaction and feel connected to their community.
A learning disability organisation based in Richmond shared their concerns about the declining mental health and isolation of those who don’t have access to technology to help them socialise.
We heard about the importance of accessible leisure activities, including sessions at leisure centres specifically for people with learning disabilities. Living in communities with such activities for people with learning disabilities has many positive effects, people told us.
“I have moved to [a community village for people with a Learning disability] and visit my parents three times a year usually for a month. I enjoy living independently with others that have a disability and I have lots of friends. I have learned to cook and look after myself with support.” - Story shared by Healthwatch Herefordshire
However, social options seem to vary, depending on the local authorities’ social care funding and are often limited.
“Socialising is very hard as there are no groups in this borough that are prepared to help people with a learning disability.”
People also shared difficulties socialising outside of the learning disability community. People, including parents and carers, told us their concerns about the impact that bullying can have on people’s ability to socialise and highlighted that more should be done to increase awareness and acceptance of people with learning disabilities.
Accessible communication and inclusive healthcare
Our previous work showed that 28% of people with hearing, sight or learning disabilities said they had been refused help when requesting accessible information from the NHS.
We also recently asked local Healthwatch to visit 22 Community Diagnostic Centres around the country - 14 of the centres they visited did not have Easy Read materials available.
This reiterated what people told us, as we heard about communication preferences not being met, including one person who was unable to get a GP appointment as they couldn’t communicate on the phone.
People shared their frustrations about the lack of hospital staff with Makaton training – a language programme that combines signs, symbols and speech to give different options for people to communicate, which left people without a method of communication. When staff had basic Makaton training, we heard how this helped people relax in their appointments.
People also told us they struggled to find information about services for learning disabilities and support available. They learnt more information from speaking to other parents and carers.
"As a parent of a disabled/severe learning disability young adult, information is hard to come by and you learn more from other parents who are in the same situation."
What can be done?
Support for people who have a learning disability needs to be personalised, accessible, and proactively shared with those who might benefit. We’re calling for:
- Increased funding for local services through the annual local government finance settlement. This should be ringfenced to help local authorities address assessment backlogs while proactively supporting people waiting for assessments, reviews, or care packages to begin.
- More support for unpaid carers, including reform of Carer’s Allowance, to increase the total benefit provided, give people access to more funding when looking after multiple people, allow more than one carer to claim for the same person, move from an earnings limit to an hours of work limit, and scrap the 21-hour rule for those in full-time education.
- Changes to the Care Act to give people better access to Care Act advocates who can help people with learning disabilities understand decisions about their care and support.
- Involvement of people with a learning disability and others with accessible information needs in designing support services, including how information is presented. This should include better provision and signposting of information to people about support available in their area.
- The government to develop an NHS admin transformation plan, to hire more non-clinical staff including care navigators. These staff can support people with learning disabilities and their carers to understand their rights and ensure their communication preferences are up to date in NHS systems
- NHS England to urgently publish its revised Accessible Information Standard (AIS) and new self-assessment framework for providers on complying with the AIS.
- Stronger action by commissioners of health and care services to ensure providers comply with the AIS and meet information and communication needs of people with learning disabilities.
- Comprehensive accessibility audits to be carried out at all Community Diagnostic sites to highlight and address barriers for people with learning disabilities.
- Makaton training to be more widely rolled out to health and care staff.
If you would like to share your experiences with us call the team on 01432 277044 or go to Have Your Say.
