Day 94 is another shared day, this time between Barbara and Gail. They both opted to write blog posts, Barbara’s is featured below, together with extracts from Gail’s although you’ll need to visit her blog for the full piece.
When asked why she was supporting #107days and #JusticeforLB this is what Barbara had to say:
I’m a citizen advocate who is also a teaching assistant on the BA(Hons) Learning Disability Studies course at University of Manchester and a volunteer supporter with their Partnership Steering Group. I first became aware of LB when I stumbled on Sara’s tweets last winter as a novice on Twitter. Shocked by Connor’s death, struck by Sara’s frankness, I was and remain in total admiration of her determination and staying power. I too want to see Justice for LB, justice for all the dudes young and old. The campaign makes me wonder what becomes of abuse victims who don’t have anyone to speak up on their behalf… I believe many people, members of the public, can make a positive difference through citizen advocacy: you don’t have to be an expert to be an abuse watchdog.
Barbara asked to write a blog post for her action, which is reproduced below, Speaking up for Citizen Advocacy.
In this blog I am going to touch on abuse, promote citizen advocacy and question current advocacy trends for learning disabled people. Abuse continues despite numerous reviews and recommendations. The reasons are complex but two issues stand out for me:
1. Bureaucracy, ingrained in service culture, obstructs and takes precedence over the support and care of individuals. Ever expanding, repetitive and often seemingly pointless, it leads to the neglect and abuse of individuals who are supposedly being ‘served’. There would be less abuse if services streamlined all this red tape!
2. Social Devaluation: People make unconscious judgements about others. Negative judgements mean marginalised people like those labelled as learning disabled are considered of less value. This can lead to them being treated badly and abused. Also they may well be denied valued things in life like supportive relationships, respect, love, autonomy and participation in meaningful activity. To combat this social devaluation Wolf Wolfensberger, an American psychologist, promoted the importance of creating, supporting and defending valued social roles for people at risk, social roles like family member, friend, worker, volunteer, artist, cinemagoer, holidaymaker, car owner. Thus vulnerable individuals can gain self-esteem and are likely to be viewed more highly and treated better by others in society (Wolfensberger, 1998). This is how citizen advocacy originated.
Citizen advocates are volunteers who develop long term relationships with vulnerable individuals and speak up on their behalf. The advocate partner is someone at risk of having choices, wishes and decisions ignored, and who needs help in making them known and making sure they are responded to. The citizen advocate also attempts to meet their advocate partner’s expressive needs like emotional support, warmth, commitment, friendship, love. More information about the citizen advocacy partnership is available here.
Over 10 years my advocate partner Gloria (not her real name) and I have built up a close relationship. Like LB, Gloria is fond of public transport and our weekly meets invariably entail a tram or bus trip as well as a bite to eat. I have supported her to be heard and helped realise her wishes to get a car and go on holiday. Gloria has experienced abuse. Often the system is at fault and staff aren’t always aware. Ways I have helped to counteract abuse
- Money spent irresponsibly by past support workers was refunded to Gloria in response to my formal complaint.
- With my instigation, Gloria has received support from familiar support workers during hospital admissions to ensure past experiences of fear and neglect were not repeated.
- The service was obliged to shelve plans to set up a staff office in Gloria’s home due to my protest regarding her tenancy rights. Awareness-raising is an ongoing need, for instance the connecting door with the neighbouring tenancy, keeping it open is convenient for staff but this breaches the tenants’ right to a private life.
- I alerted the CQC who discussed the negative effects of staff shortages and regular use of agency workers with Gloria’s support service. Recent increased permanent staffing will hopefully provide greater stability.
Benefits are reciprocal: I have gained massively too and will always be indebted to Gloria for many things, including my degree.
UK Citizen Advocacy was developed in the 1970s/80s to support individuals being resettled from the long stay institutions, some of those partnerships continue today. The 2001 Valuing People policy offered local authorities funding to set up self-advocacy and citizen advocacy projects. Development of the latter was patchy and the impact unclear and sadly citizen advocacy has gradually receded. This may have been partly due to the difficulty in measuring the effectiveness of this long-term partnership. Time-limited interventions are easier to substantiate and understandably commissioners want to fund evidence-based advocacy. So paid case advocacy has expanded and so have Independent Mental Capacity Advocates (IMCAs) as a result of the Mental Capacity Act. The different types of advocacy – case, IMCA, self, peer, citizen advocacy – all have their value but not at the expense of each other. The long-term benefits of the citizen advocacy partnership are equally if not more valuable in fighting abuse.
With the introduction of the new Care Act local authorities will be duty-bound to provide ‘independent’ advocacy for certain people to ensure they are better involved in the assessment and care/support planning processes and to support them through safeguarding enquiries. This is great but the Learning Disabilities Observatory believe there is a real danger that organisations will only be able to support learning disabled people assessed as ‘eligible’ for advocacy services and advocacy will come to be seen by commissioners as another professional ‘service’ to be delivered. Who is going to speak up for the rest? If services are at fault in the perpetuation of abuse why is advocacy, with its history of campaigning for rights and mission to question service organisations, increasingly joining the service provision fraternity?
Indeed the introduction of the City and Guilds advocacy qualification means advocacy is becoming increasingly professionalised with some contracts expecting organisations to employ qualified staff. Meanwhile recent policies like Building the Big Society 2010 and Learning Disability Good Practice 2013 encourage local volunteering and involvement in social action, capacity building and development of more community-based support. Plus person-centred circles of support are current good practice. To my mind citizen advocacy fits neatly with all of these. Another reason for it to be promoted not neglected.
A citizen advocate is also independent. Although, there is a lack of research into the extent to which independence supports, or otherwise, produce beneficial outcomes according to the School of Social Care Research, many advocacy organisations are not independent. Most are reliant on state funding, some provide care or support services and others share premises, email servers etc. with the services they are supposed to be holding to account. Advocacy organisations which are reliant, either totally or partly on state funding, are in a difficult position to dispute the parameters of their commissioning contracts. Indeed this Tuesday, Patrick Butler in the Guardian claimed charities (most advocacy organisations are) are having to tone down their campaigning for fear of losing state funding. Compromising independence is likely to reduce advocacy organisations’ effectiveness.
On the other hand, their ‘Loose Cannon’ characteristic enables citizen advocates to be more effective. Unlike in the US, due to public dependence on the UK welfare state and the fact it is taken for granted, the importance of independent advocacy is not properly understood or thought necessary by services or the general public according to Wolfensberger. But what we actually need are more independent citizen advocates who are prepared to speak up for people like LB and Gloria. At this crucial time when abuse isn’t going away, I call on commissioners, policy-makers, advocacy organisations, all those with influence to reflect on the current situation of advocacy in this country and promote more voluntary citizen advocacy. I believe many more people, members of the public, can make a positive difference through citizen advocacy. Come and join us!
Gail has this to say about supporting #107days and #JusticeforLB:
I wanted to do something for the #107 days campaign because apart from the collective outrage that has been so evident it’s restored my faith in humanity. The sense of positivity it has produced is infectious, heart warming and gives me some hope that things can and will change in the future.
Sara is one of my dearest friends and I’ve known Connor since he was around 5 or 6 years old. We are part of a group of six close friends who all met when our dudes attended the same academy for crazy little dudes. We call ourselves the ‘life raft’. Our families have all socialised together for years and so obviously our kids all grew up knowing each other well too. Connor’s death shocked and saddened all of us more that I can say and we remain incensed that it was so preventable. I’ve spoken a lot about Connor and Sara on my blog, not least because his death came just 6 weeks after the sudden and unexpected death of my husband Bob and we’ve been coping with grief shit stuff on a similar trajectory. Similar but not the same, because of course Bob’s death was no one else’s fault. As I’ve been trying to deal with my own grief I’ve watched my friend and her family endure the most inhumane treatment by those ultimately responsible for their son’s preventable death. Compounding their grief and making dealing with their loss so much harder.
Although I’ve adopted today I’ve been raising the Justice for LB campaign in all the work I do, both for Dimensions UK as a Family Consultant and Oxfordshire Family Support Network as Transition support coordinator. I’ve raised it in training, in meetings and parent workshops, basically any chance I get to get this story out there. And, I’ll continue to do this long after the #107 days campaign.
There are a lot of high profile speakers and I’m up against David Starkey (and many others) in my time slot, so I’m not sure how many people will come along and listen to me, but it’s a chance to talk about the SEND reforms and the Children and Families Act and what it should mean to families and I was thrilled to be asked. I’m dedicating my talk to Connor and his family.
My main focus is on Person Centred approaches and why without them the SEND reforms are set to fail. The need for this way of working in health, education and social care to become embedded in the systems that surround our children and the need for families to be treated as respected partners, involved throughout.
Gail’s post, and indeed her talk, will discuss person centred approaches and the role that they can, and should, play in ensuring good support for all dudes.