Learning Disabilities, Autism and Neurodivergence Bill: consultation

Section 5: Independent Advocacy

Independent advocacy can play a key role in helping people to secure their rights. An independent advocate will help someone's voice be heard. This can help people to make choices about their services and supports. There are different kinds of independent advocacy and this includes collective advocacy when people are supported to come together to talk about their experiences and challenge discrimination.

What we have heard

We know that neurodivergent people and people with learning disabilities often don't know what their rights are - but they know and experience when things are not working in practice. People often have rights they don't know they have or, where they know about them, they aren't sure how to access those rights. Neurodivergent people, and people with learning disabilities, can struggle to be heard.

Independent advocacy is one way that people can receive help to understand and access their rights. Other things are also important - like accessible communications and complaints systems, professionals who are trained in working with neurodivergent people and people with learning disabilities, and access to legal representation.

The right to independent advocacy in the Mental Health (Care and Treatment) Scotland Act 2003 ("the 2003 Act")^[117] applies to every person with a 'mental disorder', a term that is interpreted broadly to include autistic people and people with learning disabilities. It is the duty of local authorities and health boards to make services available.

The 2003 Act does not specify the circumstances under which the right should apply, however, Mental Health Officers have duties to inform patients who are receiving compulsory care and treatment of the availability of services and to help them to access these as required. In practice, therefore independent advocacy services may be most frequently provided in these circumstances.

People have told us that they want more rights to accessible independent advocacy that is clearly signposted and available across the country.

What did LEAP think?

• A right to independent advocacy would help neurodivergent people and people with learning disabilities, secure their human rights.
• There are a number of barriers and prejudice experienced and independent advocacy could help people obtain justice.
• The Bill should provide a right to independent advocacy in a range of settings including health and social care, education and training, employment, benefits and housing.
• The right should state that independent advocacy should be provided by individuals with specific training on neurodivergence and learning disabilities. It should be individual advocacy and not collective advocacy.
• If a Commission/er is to be created, they should be responsible for ensuring the provision of an independent advocacy service for neurodivergent people and people with learning disabilities.

Case Study

"One of the most damaging myths about autistic people is a belief that we aren't interested in having relationships. How would there be autistic people in the world if there weren't autistic/neurodivergent families everywhere? We fall in love, just like anyone else, and sometimes love ends. I am autistic and have an autistic child. I separated in 2019, just before the pandemic. This is a snippet of my journey through the complexities of being neurodivergent, and how I had to face a crisis within a crisis, in a world that fails to understand our everyday needs and challenges.

In the midst of my separation, I found myself confronted with a myriad of responsibilities, from managing my own life to advocating for my autistic child, to managing a degree, to moving homes, and all of this with the COVID-19 pandemic as a background.

I desperately needed help yet when I approached Social Work and various other departments within the local authority, I was met with indifference and a surprising lack of understanding of autism given the remit of these bodies. Seemingly, we weren't struggling enough to be granted help. I lost count of the times I told our story to people on whose checklists we didn't tick the right boxes.

Ever since he had started primary school I had struggled to convince head teachers of my son's needs. By P6 he had had enough and left school due to relentless bullying and lack of adaptations. The class environment, with its sensory overload and social complexities, had become unbearable for him. The teachers struggled to understand why my child faced difficulties at school, assuming he was "rebellious" or "lazy". He became home-educated at the end of 2019, and after the lockdowns ended he decided he didn't want to go back to school.

The isolation I've felt in the last three years has been suffocating.

Something that is not often talked about is the effect of trauma and social isolation caused by being different, other, always. As well as I and my son being the only known autistic family in the neighbourhood, I am the only foreign born in this area of a very tight knit rural community.

…/continued

I grew to hate the word resilience. I felt overwhelmed and had to drop out of my university course. All NHS mental health practitioners had to offer was CBT, which isn't effective for autistic people. Social workers downplayed our needs and rejected my application for SDS, because the assessment failed to pick up on obvious aspects, like sensory and emotional difficulties that I as an adult experience on a daily basis. The energy required to navigate these challenges was overwhelming, and our struggles are far from over.

My experiences underscore the urgent need for specially trained advocates who could bridge the gap between neurodivergent individuals and decision-makers who lack understanding. We shouldn't be left to self-advocate in times when self-advocacy is the most energy consuming, burdensome, of tasks."

Where do we want to get to?

Neurodivergent people and people with learning disabilities:

• know what their rights are;
• are communicated with in a way that is inclusive and accessible to help them secure their rights; and,
• can access support when needed, including independent advocacy.

What happens now?

There are different approaches to free independent advocacy in Scotland. There are some rights in law, in addition to the 2003 Act, but they can be set out differently:

• A right to advocacy for a disabled person accessing Scottish social security entitlements where help is needed to engage effectively with the process as set out in section 10 of the Social Security (Scotland) Act 2018.^[118]
• A duty to ensure that advocacy support is available and free of charge when someone is going to a Tribunal held under the Education (Additional Support for Learning) (Scotland) Act 2004^[119] or when a child attends a children's hearing under the Children's Hearings (Scotland) Act 2011.^[120]
• There can be a duty to provide information about available advocacy services e.g. as set out in the Social Care (Self-directed Support) (Scotland) Act 2013^[121] and for children referred to a Children's Hearing as set out in the Children's Hearings (Scotland) Act 2011.
• There is a duty on Scottish Ministers to develop and publish advocacy service standards in the Social Security (Scotland) Act 2018.
• There is a duty to allow advocates to take part in discussions or make representations on an individual's request in the Education (Additional Support for Learning) (Scotland) Act 2004.^[122]
• There is a duty for a local authority to consider the importance of providing advocacy under the Adult Support and Protection (Scotland) Act 2007^[123] where they need to intervene to protect an adult at risk of harm.
• Independent advocates are also available to children and young people with additional support needs aged 12-15 in school under "My rights, my say".

This means that, whilst there are some rights in law, particularly for people with learning disabilities and autistic people, they are not consistent. It can also be difficult to obtain an independent or specialist advocate in practice due to funding constraints and the limited availability of advocates.

Under the 2003 Act, the duty to provide advocacy to autistic people and people with learning disabilities is placed on local authorities and Health Boards collaborating together – independent advocacy must be available and appropriate steps taken to make sure people can use the service.

The Mental Welfare Commission^[124] reported this year (2023) on how Health Boards and local authorities are performing in terms of their duty to provide independent advocacy services. They noted that, whilst some progress had been made, the Covid 19 pandemic had impacted the availability of staff to deliver advocacy services and not enough advocacy was available. There had been few increases in funding and there was an ongoing need to strengthen advocacy for children and young people. Recommendations included the need for strategic plans and the level and terms of funding.

The Scottish Mental Health Law Review^[125] also made recommendations about independent advocacy and the 2003 Act. It stated that only around 5% of people who have the right to independent advocacy actually access it. The Rome Review of the 2003 Act included a range of recommendations around advocacy for people with learning disabilities and autistic people. It particularly recommended that advocacy be provided on an opt out basis and that non-instructed advocates should be available to those with severe communication disabilities.

What can we do about it?

We are looking at how we can improve rights through the availability of independent advocacy through our policies on:

• The creation of a National Care Service through the National Care Service (Scotland) Bill (the "NCS Bill"); and,
• Our response to the Scottish Mental Health Law Review.

Section 13 of the NCS Bill^[126] as introduced states that "The Scottish Ministers may by regulations make provision about the provision of independent advocacy services in connection with the services that the National Care Service provides."

Proposal 1: Strengthen and improve access to existing advocacy provisions

We want to take time to make sure that there is more consistency around our approach to advocacy and we want to involve people with lived experience in helping us to design this. To do this, we will:

• work with the Scottish Independent Advocacy Alliance, other organisations and people with lived experience to help identify how best to strengthen rights and access to provision; and,
• develop a consistent definition of 'Independent Advocacy'.

This work will take place across the Scottish Government and we will ensure that it includes specific consideration of the rights of neurodivergent people and people with learning disabilities. How we legislate for advocacy for these groups will depend on the proposed changes in the NCS Bill and to mental health legislation, including whether people with a learning disability or autistic people remain covered by provisions within the 2003 Act.

This means that we are not currently proposing a broad right in this Bill to independent advocacy for neurodivergent people and people with learning disabilities. However, we think there are some other things we could explore in the Bill especially since the right to advocacy under the Mental Health Act only applies the duty to the State Hospital, Health Boards and local authorities (although Health and Social Care Partnerships may in some cases be carrying out this duty) and only applies to a subset of neurodivergent people (as people with a "mental disorder" under the legislation includes people with learning disabilities and autistic people).

Therefore, we could:

• Provide a power in the Bill that allows us to make regulations around the provision of independent advocacy for neurodivergent people and people with learning disabilities whilst further discussions take place about how to improve this.
• Include a provision in the Bill that places a duty on all public bodies to ensure that all neurodivergent people and people with learning disabilities are given information about advocacy and how to appoint their own independent advocate to support them.

Proposal 2: Improve our Understanding of Independent Advocacy

We will also in the meantime identify and gather evidence on specific circumstances where a right to independent advocacy could make a difference.

For example, we know that there are some circumstances where additional support could help, as follows:

• Evidence from a research published by the Scottish Commission for Learning Disabilities^[127] suggests that where women with a learning disability have been subject to gender-based violence they struggle to access support due to discrimination and stereotyping. There can be significant barriers to accessing support and to effective support when people are able to come forward. Professionals may not recognise that someone has learning disabilities and if they do they may not have any relevant training in how to support them.

"Women with learning disabilities can also be fearful of Adult Support and Protection and Child Protection processes and this can stop them from disclosing violence and abuse. Women can face negative attitudes about their ability to parent as a result of reporting abuse. Although some women may benefit from the provision of an appropriate adult where they make a complaint, this is not consistent."

• The Equalities and Human Rights Commission, in its Inquiry report into housing for disabled people in 2018,recommended that local authorities should ensure that people with learning disabilities have access to good-quality, accessible advice and advocacy when discussing housing options and to help them navigate complex systems.

We could consider whether the Bill could provide some specific legal rights to free independent advocacy in these circumstances, as well as others.