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Chapter 3: What needs to happen

Dilemmas of effective advocacy

This section is based on what we have heard from people with learning disabilities, families, advocacy projects and people who commission and work in direct care services. We want to learn from the good experiences around advocacy that people have had, so these happen for everyone. We also want to learn from what has not worked so these things do not happen again.

Being clear about people's roles

Sometimes a person will want to have an advocate because they want everyone's roles to be clear.

We recognise that it is within the role of many professionals - such as social workers, nurses and support workers - to advocate for people who use their services, as part of their job. However, it must be recognised that paid workers have divided loyalties - to their client and to their employers. There is always the possibility that these two loyalties will clash. That is one reason why independent advocacy is necessary, so that someone can have an advocate who is not limited in his/her power to act by any conflict of interest.

Independent advocates are still resisted in some cases where a worker feels that he/she is the person's advocate. Some professionals feel that the advocate is implying they can not do their job properly, just by being there!

The role of the advocate needs to be well understood. At the same time, people who work in services need to be clear about, and confident in, their own role.

It can also be hard for families and friends, who want the best for someone, to know when they should stand back and let the person with learning disabilities make their own choices and say what they want. Sometimes the individual and the family members want different things.

Challenging the status quo

The reason we need advocacy is to help people who have very little power to have the same power as everyone else.

Advocates still regularly tell stories of being undermined by staff who do not want to lose their power over the person they are supporting. Most people with learning disabilities still feel relatively powerless compared to their support workers and other professionals in their lives. Advocates align themselves with their advocacy partners, and therefore are also quite vulnerable.

It is easy for staff who work in services - especially when the person with learning disabilities lives in hospital or in a residential setting - to make things difficult for advocates by, for example, not inviting the advocate to meetings, not passing on information, arranging doctor's appointments at a time the advocate is due to visit, or by not letting the person meet with their advocate in private.

It is also possible to make things easy for the person with learning disabilities by making practical arrangements that do include the person's independent advocate. Similarly, if this is what the person wants, the arrangements can make it easy for a friend or relative to be there.

It may well be that these incidents where advocates are excluded are occurring less as advocacy becomes more accepted, but we have heard it is still quite common practice.

Risk averse society

Advocates have at least two responsibilities: first, to pursue the wishes of their advocacy partner; secondly, to keep them safe from harm, especially serious harm such as abuse. For much of the time, these responsibilities coincide. But there will be situations which raise dilemmas.

The first dilemma around risk is for an advocate: if my role is to pursue my partner's wishes, and my other role is to protect my partner from harm, what do I do when my partner wants to take a course of action that may lead him into harm?

A second dilemma is for service agencies that commission or provide services to people with learning disabilities. In a way it is the same dilemma. On the one hand, The same as you? has encouraged the view that people with learning disabilities should have as much say as possible over their own lives, and many services agencies try to put that principle into their services. On the other hand, there is some pressure on these agencies to act in a risk averse way. This is a key theme in the 21st Century Social Work Review. Therefore, the dilemma is: What do we do when someone with learning disabilities says they intend to take a course of action that may be risky? And what do we do when an advocate states this on the person's behalf?

This is a huge dilemma for an agency or person that feels they would be severely criticised if someone whom they support ends up harmed. It is a huge dilemma for a social work department that has a statutory responsibility to protect someone who is deemed to be vulnerable. It is all too easy to err on the side of caution, and automatically try to prevent someone from taking the risky course of action in the first place.

Many people with learning disabilities and many advocacy projects have told us that this is a fairly common scenario. Advocates have been asked to support someone to be allowed to act in a way that might be described by someone else as risky, but which the person thinks is a normal part of having a good life like everyone else. These situations include:

• getting involved in a relationship
• moving away from the family home
• staying out late
• getting drunk
• smoking
• having a child

People have also told us how they had worked out ways to reduce the risk of anything going wrong - often through talking over their plans with people they trusted, and sometimes including an advocate. But an assessment was made by someone who didn't have all the details and had not asked them about their plans.

Many people with learning disabilities report having plenty of people trying to keep them safe, but not too many supporting them to take risks. Therefore, what they usually want advocates to do is support them to take the risk. This is something some people with learning disabilities told us they feel extremely strongly about.

When advocates are asked to represent someone's wishes to do something risky, it can help everybody. Responsible advocates will not only represent someone's wishes, they will also try to make sure that that person is fully informed about the possible consequences, and is making an informed decision. This can help reassure everyone - relatives, professionals and people in the wider community - in that person's life, who may be worried that they will be blamed for any harmful outcome.

There needs to be an ongoing debate between the need to protect and reduce risks for those who are most vulnerable and the rights of individuals to lead free, full and fulfilled lives. People with learning disabilities have told us that they want to be part of that debate. They want other people to hear their experience and suggestions on what can help people understand and manage risks.

Consent

During the consultation on this report it was put to us that advocates should only be able to act as advocates for people who have the capacity to consent. Another way of saying this is that people who do not have the capacity to consent are not able to have an advocate.

People with disabilities and families told us how important it was that a potentially vulnerable group of people are not made more vulnerable by being denied this right to independent advocacy.

We agree with the view that capacity to consent should not be an issue in whether someone has access to independent advocacy.

It is stated in the Mental Health (Care and Treatment) Act that anyone with a mental disorder has the right to access advocacy services. The definition of 'mental disorder' in the Act includes people - children and adults - with a learning disability.

The Adults with Incapacity Act makes it clear that people are not simply 'capable' or 'incapable'. There are degrees of capacity, and there are some situations where someone can give consent and others where the same person cannot give consent.

It is useful to remember that advocacy projects have developed good practice for situations like this:

• Wherever possible, advocates find out what it is that their partners' wishes are.
• This can take a long time - it should be borne in mind that long-term advocacy is a preferable model in these situations.
• There are situations when the advocate may acknowledge that she does not know what her partner wants, yet her presence may be useful. In a situation where decisions are being made by service professionals about her partner, she may be the only person around the table who doesn't have a conflict of interest. In situations like this, the advocate's view is no more than her view, but it should still have some weight.
• There are other situations where consent seems unnecessary, for example when someone is being abused or neglected, or having their human rights denied. In these situations it seems appropriate that an advocate should speak up on behalf of her partner.

What advocacy projects cover

The people across Scotland who told us their experiences were clear that advocacy should help them get good support and achieve their rights in all aspects of their lives.

Issues where people with learning disabilities and families said they wanted some extra help to say what they wanted included:

• employment
• housing
• transport
• education
• moving from school and children's services to adult life and services
• health services
• social work services
• assistance with social integration and using ordinary community services
• access to services to support people with learning disabilities in their role as parents
• financial services
• police and community safety services

But many advocacy projects concentrate on health and social care issues. They receive all or most of their funding from social work or health budgets. Sometimes the funders have said they expect the project to do work that relates to people's use of particular services, and sometimes it is implied. Other projects have told us that they have more flexibility and can address whatever people with learning disabilities want to raise.

There are implications for advocacy projects being treated by commissioners in the same way as most other services for matters like geographical boundaries, age of the people they support etc. Freda's story shows how inflexible approaches around the geographical scope of an advocacy project can disrupt advocacy support at a time when it is needed and disrupt relationships based on trust. The outcome described here may have been the best outcome in that situation, but it raises wider issues.

Training

Throughout our discussions the issue of training came to the fore time and time again. There is still considerable uncertainty about what advocacy is and what the role of an advocate should be. The importance of developing and equipping staff with a general understanding and improving the skill base of existing advocates is self evident. We recognise that training needs to take place at various levels and at different times.

• Training for staff and professionals who work in the health and social care sector is of primary importance and those with professional responsibility should consider including awareness raising on advocacy as a matter of priority, not least given the centrality of advocacy in the Mental Health (Care and Treatment) Act.
• Training for staff who work in other sectors, such as, housing, criminal justice, and the police would also be beneficial. Increasingly advocates would find their services being properly used outside the narrow social care and health spheres.
• Training and the need to develop a national and coherent approach to learning and mutual development again raises the importance of resources. Commissioners should consider it a priority that advocacy projects are properly funded to ensure that ongoing training and staff development is factored in to agreements. Commissioners should also look at how their organisations can include advocacy projects in training that they are providing or funding.
• Any training offered should include the individuals who use advocacy at its heart. There is already good practice in training programmes offered by SIAA and others.
• There are also a whole set of issues around training in relation to communication, not least with regard to autism and Asperger's syndrome. Annex 7 highlights a helpful guide to some of the issues raised.
• Commissioners should monitor the degree to which projects are keeping abreast of communication developments and issues both in training and practice.

Diversity

People with learning disabilities told us how service providers often do not understand that people who have learning disabilities are as diverse a group as any other group of people in Scotland. They include people from minority ethnic communities, people whose first language is not English, people who are gay, lesbian, bisexual and transgender, and people who have a range of disabilities and health problems. They have also told us that often when they look to advocacy projects to help them get support which reflects each person's own circumstances, the advocacy project isn't very good at responding to diversity. Sometimes, this is because of the way the projects are funded - for example, all people who have a learning disability have to go to the project for their area, rather than choose an advocacy project in another area that suits them. Sometimes, it is because the staff or volunteers haven't had much training around diversity.

If there is more flexibility and choice for people with learning disabilities in where they get advocacy support, this would solve some of these problems.

Other actions that would help are advocacy projects doing more to respond to diversity in every aspect of their work.

Children, young people and older people

In many parts of the country there are no advocacy projects for people aged under 18 who have learning disabilities. The new Mental Health Act and the Additional Support for Learning Act both say that children should have access to advocacy. Getting advocacy for problems around education is important, but this is not the only issue which people told us matters to children and young people.

Another issue which was raised is the type of advocacy available for children and young people. We heard of some projects where citizen advocates who are also younger have been recruited, but this is still unusual.

There are similar problems for people who have learning disabilities when they get over the age of 60 (or 65 in some areas). We heard how people can fall between the advocacy projects that there are for people with learning disabilities and the projects for older people.

Funding for advocacy projects

People with learning disabilities and families told us how they were worried that funding for existing advocacy projects would be reduced or cut, and how there didn't seem to enough funding for more projects in places where there was little advocacy support available. A particular concern is around advocacy projects which were set up when a hospital was closing, and where the funders seem to assume that the job of the project is over once the hospital has closed. People who were denied the chance to gain the confidence and skills to explain what they want during the years they spent in hospital may want to continue to make other changes in their lives.

Advocacy projects also told us how they felt there was a lot of uncertainty about their position from year to year, and how this could make it difficult to maintain staffing and volunteering levels.

We looked at levels of funding for advocacy in each local area, and at the types of projects that are funded, especially by local authorities and the NHS. A summary can be found in Annex 4.

The sources of funding, as well as levels of funding, can cause problems. As we have already noted, in some places the funders expect that if the funding is from health and social work budgets, the advocacy projects should concentrate on that. In other places, the view seems to be that whatever budget is used, what matters is supporting people with learning disabilities to have a good life.

Accountability for advocacy

We heard from people with learning disabilities and families about good experiences when the advocacy project was accountable to them and they felt they were in control. We also heard from people whose experience was that the advocate seemed more concerned with what other organisations or their funders would think - where they would go so far but then stop, for fear of rocking the boat.

We heard from advocacy projects about situations where they were expected not to challenge too much, and from staff in services and funders who thought that advocacy projects should work to promote the local policies.

We also heard of situations where the advocacy projects and the people who funded advocacy had discussed how the project could be as independent as possible and be accountable to the advocacy partners first and to other people after that.

We heard from advocacy projects which felt they had to pay too much attention to counting how many people used the project and activity levels, and were never asked about the outcomes for people who came to them looking for help in making their lives better. We also heard about some projects which did not seem to respect that they were receiving public money, or who were not giving a good quality of advocacy support.

The working group feel strongly that the accountability of an advocacy project is to people with learning disabilities and the other people whom advocacy projects support. In the first instance, this is to the advocacy partner. But it is also to all the other people with learning disabilities who want to have good quality advocacy.

We think that there needs to be more discussion over the next few years about what we mean by good quality advocacy, and how advocacy projects are accountable to people with learning disabilities. The starting point should be the same as the starting point for advocacy - the people who have limited power setting the agenda and having more choice and more power.

Conclusion

This report sets out a number of action points for improving the quality and accessibility of advocacy to people of all ages, with learning disabilities and with autism spectrum disorders in Scotland. The following annexes describe person-centred services, set out good practice, and provide information to help individuals, families and people who provide a range of services as they work to contribute to inclusive, supportive communities.

The action points throughout the report are set out here so people can see where the next steps lie. However, these action points need to be seen as part of a much wider agenda where most people in society have some contribution to make to understanding and responding to the needs of people with learning disabilities and autism spectrum disorders, and achieving the goals set out in The same as you?.

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