In the UK, around 1.5 million people have a learning disability; 884,000 are adults of working age, while 349,000 are children.[1] Additionally, an estimated one in 100 people are autistic. [2]
Advocacy services, whereby an organisation speaks up for an individual or groups to ensure their human rights are respected or helps them access and understand support options, can play a critical role in supporting these people. But many organisations offering these services are non-statutory; in other words, they are not mandated by law.
As such, organisations supporting these individuals often encounter funding challenges, which prevents them from offering their services to everyone who needs them. Approximately 69% of these organisations have turned people away in the past due to a lack of staff and funding.[3]
In response to the gaps in provision, The Henry Smith Charity launched a £2.6 million Strategic Grant programme in 2022 to support 15 organisations providing advocacy services for individuals with learning disabilities and autistic people across the UK. The main goals of the programme were to provide funding for service delivery and gather evidence to understand if and how advocacy services empower individuals with learning disabilities and autistic people to influence decisions affecting their lives. Ultimately, this could serve as a strong case for increased funding and support on a national level.
The Henry Smith Charity teamed up with Social Finance who acted as the learning and evaluation partner for the programme and have just released the final report showcasing the findings from their research over the past 2.5 years. They were supported by Speakup who acted as the lived experience partner. “We’ve built a lot of the evidence, and now we’re looking at how we can bring all of these things together to put forward some suggestions for the government and the sector so that some of this really helpful work can continue and be sustained in the years to come,” explained Tanyah Hameed, Manager at Social Finance.
“We’ve built a lot of the evidence, and now we’re looking at how we can bring all of these things together to put forward some suggestions for the government and the sector”
Tanyah Hameed, Manager at Social Finance
During the past two and a half years, Social Finance has collaborated with grant holders to gather and analyse meaningful data on outcomes and impact, making up for the lack of quantitative research in this area. This joint effort served to understand better the individuals the grant holders support, the services they provide, and the impact they have on those receiving assistance. To build an in-depth understanding of these aspects, Social Finance organised interviews and surveys with grant holders, and spoke to people benefiting from the services. In addition, Social Finance hosted quarterly community of practice events to facilitate peer learning across grant holders and also gathered several case studies. “We wanted to add that sort of ‘hearts and minds’ aspect to the numbers that we were collecting because…we realised that that’s a huge part of telling the story” explained Tanyah Hameed. A cost-benefit analysis was also conducted, the results of which will be discussed in the upcoming report.
What is the added value of non-statutory advocacy?
Feedback from people benefiting from advocacy, grant holders and advisory group members consistently indicated that non-statutory advocacy can support people in areas where statutory advocacy does not reach. Non-statutory advocacy is often more flexible and tailored to the needs of the person and typically driven by them. Additionally, the support is usually more long-term; individuals are welcomed back to the service if they face recurring issues or new challenges that require assistance. “Finally, there’s a lot of focus on building trust in those relationships by working very closely with the people receiving support, especially when it comes to one-to-one advocacy,” added Tanyah Hameed.
As of December 2024, 1667 people had been supported by the grant holders through this programme. 59% of these people had a learning disability, 25% were autistic, and 16% reported having both learning disabilities and being autistic. Additionally, the data revealed a balanced gender distribution, with the 30–39 age group being the most prominent. However, there was room for improvement in terms of ethnic diversity; white ethnicities appeared to be overrepresented, while Asian ethnicities were underrepresented.
“This aspect could be worked on more. Grant holders need more resourcing, as in some cases, this is the consequence of limited capacity. In other cases, there is a need for more culturally aware or culturally relevant support, which could include, for instance, having professionals with the appropriate linguistic or cultural backgrounds,” pointed out Tanyah Hameed.
Key reasons why people approach advocacy include needing access to healthcare, social or other related services, or support with accommodation.
“What also stood out was the ways in which these grant holders were helping people… advocating for them with services and explaining their rights and options, especially when they might have quite technical and complicated meetings with professionals…it was really about helping them prepare for these meetings, accompanying them, and after the meeting, helping them understand what their options were” explained Tanyah Hameed.
“Grant holders need more resourcing…there is a need for more culturally aware or culturally relevant support”
– Tanyah Hameed
The latest research: key recommendations for service development
A new report has just been published, wrapping up nearly three years of work on this programme. The focus will be on understanding the impact of these services through qualitative and quantitative data, including a cost-benefit analysis. Case studies will illustrate these points in greater detail, showcasing how advocacy has improved lives.
Social Finance, Speakup and The Henry Smith Charity will share these key learnings and recommendations for future funding, policy development, and empowering the sector’s collective voice.
Based on the findings from this programme, there are opportunities to connect non-statutory advocacy with existing policy priorities:
- Health: There is a strong connection between supporting invisible disabilities and long-term health and wellbeing. Advocacy services can help relieve pressures on the NHS by preventing the escalation of needs, supporting more appropriate use of health services, and can lead to considerable savings.
- Employment and skills: The new government has pledged to support initiatives designed to help more people who face significant barriers to employment into the workplace. Advocacy can truly help people with learning disabilities and autistic people live more independent and fulfilling lives, which allows them to participate in the labour market. Where people have employment-related advocacy goals, there may be opportunities for closer integration of advocacy with specialised services supporting employment, education and skills.
- Interlink between existing services: There is potential for linking advocacy to existing services, for example, Individual Placement and Support (IPS) for those with severe mental illness and learning disabilities, to enhance the overall support offer for these individuals.
The findings also suggest the following recommendations:
- Centralised support from government: At present, it is unclear whether there exists a dedicated ministerial responsibility for advocacy policy, or whether there is a central government policy team responsible for non-statutory advocacy. A lack of clarity here causes frustration for many in the advocacy sector as people are unsure about whom to approach within government regarding advocacy-related issues. To address this issue, a dedicated policy team should be established with the aim of growing and improving independent advocacy for people with learning disabilities and autistic people.
- Advocacy expansion fund: Given the funding constraints faced by local government, we recommend that a non-statutory advocacy expansion fund should be established by central government to test a nationwide expansion of independent advocacy support. This fund could provide catalytic capital that attracts further funding from the social impact investment market. Combined mayoral authorities could play a crucial facilitation role in implementing and rolling out this support.
- A unified voice for the sector: To present a collective approach to better represent the interests of advocacy services across the UK, a collaboration between organisations (e.g. through a sector body) could enhance evidence-sharing with the government, facilitate training, and improve the commissioning of research. A design phase is crucial to explore the best way forward, with input from sector organisations (such as NDTi and Scottish Independent Advocacy Alliance (SIAA), and All Wales People First) and people with learning disabilities and autistic people.
- Dissemination and partnerships: Continue disseminating best practices, especially as the sector grows, for example, building on relationships and partnerships that have emerged as part of the collaboration with The Henry Smith Charity.
“I think there’s so much uncertainty around funding…there’s not a lot of funding by organisations outside of Henry Smith. I think it would be really good to have more long-term, core funding for some of these organisations through various sources, including the government, to ensure they can continue delivering their services, helping people at an earlier stage and preventing the escalation of their needs.”
– Tanyah Hameed
You can read the report on the Social Finance Website.
References
[1] https://www.mencap.org.uk/learning-disability-explained/research-and-statistics/how-common-learning-disability
[2] https://www.autism.org.uk/advice-and-guidance/what-is-autism
[3] https://www.socialfinance.org.uk/assets/documents/Building-evidence-around-advocacy-for-learning-disabilities-and-autism.pdf
Author
Luca Arfini, for The Henry Smith Charity
Editors and Contributors
Ellen Rowland, Communications Manager at The Henry Smith Charity, with Tanyah Hameed, Manager at Social Finance