Blog: Reviewing advocacy for people with a learning disability and autistic people

Independent Advocacy is a fundamental approach to supporting people throughout their lives to get the life they want, be heard and have their rights upheld.

It is a critical safeguard for people when they are at risk of not having their rights upheld or being excluded from decision making about their lives. Access to independent advocacy is especially important when people are living and being supported in restricted settings. There are just over 2000 people with a learning disability and autistic people who are inpatients in mental health settings[1].

About the review

We're pleased to publish our report which sets out the findings and recommendations from our review of advocacy for people with a learning disability and autistic people who are inpatients in mental health settings. The review, which was undertaken alongside partners, Bringing us Together, The Challenging Behaviour Foundation, Speakup Self Advocacy and People First Independent Advocacy, is the first of its kind and is wide ranging and comprehensive.

Whilst the review team identified some positive examples of effective, person led advocacy, they also found evidence of widespread and multifactorial issues and challenges in the commissioning, delivery and access of independent advocacy, significantly impacting people with a learning disability, autistic people and their families.

About the findings

The findings show that current provision isn’t always meeting people’s needs, is often disjointed, and led by systems and processes rather than the needs of people who are drawing on advocacy support. The report sets out the many interconnected reasons for these challenges as well as making recommendations for creating change.

And change really is needed. People with a learning disability who are inpatients are clear about the support they want and need whilst in hospital and the report shows that too often, the support they are being offered falls short of these expectations. Nothing that people are requesting is surprising or difficult to achieve; it is about high quality, person led, robust independent support, delivered through trusted relationships with the advocate. It’s about advocates having and taking the time they need to really listen to people and understand, to ensure people’s voices are heard, are central to decisions and that people’s rights are upheld.

Baroness Hollins writes of the review:

“The report clearly shows the importance of trusting relationships at the heart of successful advocacy, and how advocacy can change people’s lives for the better. But clarity around entitlement to advocacy is needed, and this must not be based on a particular part of a person’s journey - instead, to quote the report, “person-led advocacy for as long as it takes.”

Some of our recommendations

• People need advocacy to be more easily available.
• People need advocacy to be commissioned independently and for the advocacy offer to be more consistent across areas and regions.
• People need access to more holistic, longer term, person led advocacy and to be able to build a relationship with their advocate.
• People need advocates to be present on wards and units, including children and young people’s units.
• People, and their families and support networks, need access to reliable and consistent information about advocacy.
• People need their advocates to work alongside their family members.
• In order to achieve this, advocates will need increased support, training and supervision to ensure they retain their independence and unerring professional curiosity.
• Advocacy organisations need to adequality resourced and there needs to be increased consistency in the advocacy offer across the country.

We are calling for a national advocacy strategy and multi-agency approach to achieving the change that people with a learning disability and autistic people and their families need to see. We’re looking forward to working with the people and families, the advocacy sector, government agencies and mental health services, so that we can collectively address the issues identified and create change.

NDTi will be hosting a series of webinars to share the findings and recommendations in the review as well as sharing ideas and examples of what works well. There’ll also be time to begin to plan the changes individuals and groups can be making already.

There are three versions of the report, an Easy Read report and a summary report alongside the full report. We know the reports will be uncomfortable reading for some, and we encourage you to read with a sense of openness and optimism and that the findings help motivate everyone to come together to help create change.

When delivered at its best, independent advocacy can be transformative. It has the ability to enable people to change their lives, have their views, wishes, and preferences heard and responded to as well as ensure their rights are upheld. This is what people with a learning disability and autistic people deserve.

Conclusions

This review has shown the value of independent advocacy and the challenges experienced by people with a learning disability and autistic people in accessing the advocacy support they want, need and in many cases, are legally entitled to.

It has also highlighted that there is inconsistent access to independent advocacy for people with a learning disability and or autistic people who are inpatients in mental health, learning disability or autism specialist hospitals.

It is clear that the issues impacting on the commissioning, delivery and experience of independent advocacy are complex, multifaceted, and multi-causal and it will be essential that government and agencies across health and social care, including providers of independent advocacy continue to work proactively to address the issues identified in this review.

We need to continue to develop our shared understanding of how best to arrange, provide and facilitate access to independent advocacy, as well as continue to support a broader range of advocacy services for people with a learning disability and autistic people.

The findings and recommendations for creating change presented here will take time and commitment to address and there is an urgency in doing so. Here at NDTi we’re looking forward to working in partnership with people, families, the advocacy community, government agencies and hospital settings to drive forward the change the people with a learning disability.

Read the reports from the review.

[1] https://digital.nhs.uk/data-and-information/publications/statistical/learning-disability-services-statistics