Author: Virginia Moffatt, Chief Operating Officer Ekklesia
I have been invited to submit evidence to contribute to the submission to the Adult Social Care Inquiry based on my experience working in social care, in a career that spanned thirty years. During that time I have worked for four different nonprofit organisations (L’Arche Lambeth, Barnardo’s, Southwark INFORM, Southwark Consortium) and four local authorities (Southwark, Camden, Essex and Oxfordshire), in a variety of roles.
My submission will therefore detail how I began in L’Arche in 1984, the various developments and improvements I have seen and the subsequent deterioration that has been created by the onset of austerity policies in 2010.
I began my career in social care, almost by accident. I was taking a year off between school and University and looking for a volunteering opportunity when a friend suggested I try L’Arche. L’Arche is an international organisation that provides support to adults with learning disabilities living in intentional communities in ordinary settings. It was a relatively young organisation in 1984 and had been at the vanguard of resettling people from long stay hospitals that had begun in 1971 with the White Paper ‘Better Services for the Mentally Handicapped’.
At the time I had little understanding of the history of people with learning disabilities, having grown up in the 1970’s when disabled people were not visible in our communities. Before I went to L’Arche my knowledge was limited to a young girl with Down’s Syndrome who I sometimes saw round my neighbourhood but never spoke to, a week’s volunteering looking after a girl with cerebral palsy and helping out on occasional activity days for disabled children. I knew nothing of the long stay hospitals where so many people were incarcerated for years and had never stopped to think where all the disabled children were when I was growing up.
L’Arche changed all that for me. It was there that I first heard of the horrors of long stay institutions from two of my new housemates Doris and John. They’d both been sent away at the age of ten to St Lawrence’s Hospital in Caterham, swapping loving families for an institutional life. They had no possessions, were often referred to by a number, slept in massive dormitories, whilst living in a system where the nurses were at best indifferent and at worst totally cruel. Family contact was not encouraged so Doris was never told when her parents died. John, who was interested in learning despite his disabilities was mockingly called The Professor. No wonder when people from L’Arche asked them if they wanted to leave they were eager to do so.
By the time I met them, they’d been living at The Mustardseed for 7 years and were a unique part of their neighbourhood. They were active in their local church, and after coming home from the sheltered workshop would sit on the wall talking to the neighbours. The sixth months I spent living at The Mustardseed were enormously influential. It was there that I imbibed the core values at the heart of good social care:
I had a very happy time in The Mustardseed and left enriched by the experience of living with remarkable people, both those who had survived the hospitals and those who had grown up in family homes where their life opportunities had been restricted because of society’s low expectations of them.
I returned to social care in 1987, when I left university to take up a post as a residential social worker for adults with learning disabilities. Over those three years, I had undertaken regularly voluntary work at a long stay hospital in York allowing me to see for myself, how miserable such institutions were. The people I visited lived on wards with torn curtains, rows of identical beds with high backed chairs pushed back to the wall. There was no sense of warmth in their lives, and their staff were at the best indifferent, at the worst patronising and cold. My time in L’Arche had shown me that another way was possible, which was part of the reason I chose to take up my new role.
By this time, the hospital closure programme was accelerating, particularly in London where small group homes were setting up everywhere. The home I worked in was originally managed by Barnados and was located in a quiet street near Catford. My job was to support four young adults with severe learning disabilities, three of whom had spent most of their lives on the children’s wards of longstay hospitals.
I loved the job, though it proved to be physically and emotionally challenging. Working with people who could not speak, I had to learn about the importance of nonverbal communication as well as developing skills in Makaton and the use of communication aids. All four individuals needed help bathing and going to the toilet, three wore incontinence pads, so I developed a fresh understanding of the importance of respecting their privacy, delivering personal care with a gentle touch. One person required two of us to lift him, two had regular seizures, the fourth could exhibit aggressive behaviour triggered by anxiety or loss of control. Those who had spent their lives in long stay hospitals all exhibited behaviours related to the trauma they had endured there. It was hard work with three staff on duty, but shifts with two staff were exhausting.
Nonetheless, I loved working enabling the four people we supported to connect with their community, enjoy leisure pastimes such as walking or going to football matches, and undertake day trips and holidays. We worked hard to support each of them to have regular contact with their families (particularly important for those who had lost touch when in hospital), to celebrate birthdays and national holidays – in short to provide them with an ordinary life.
Just as I was leaving this position, the Griffiths Report was published which was to usher in the ‘mixed economy of care’ with provision for services being offered across the public, voluntary and private sectors, this was later to translate into the 1990 NHS & Community Care Act which was to accelerate the hospital closure programme.
My next role was in a day centre which introduced me to a new aspect of social care. The service I worked in was in Southwark and had been developed in response to years of family carers lobbying for somewhere for their relatives to go after special school. After experiencing the warmth of L’Arche and the South London home, the day centre was a grim place. A three storey concrete monstrosity, it was gradually being emptied, so that by the time I arrived we supported 40 people on the first floor. Although this was technically a community service, it felt as institutional as the hospitals. There was a definite hierarchy between service users and staff, and whilst there was an attempt to broaden activities on offer many were still very basic (making stools, putting nails in bags), and the building itself was ugly and unwelcoming.
During the two years I worked there, we moved into an adult education centre, which increased the variety of activities for people. We developed a user council, to enable people to speak up, we set up a cafe project, created connections with an employment service to help some service users see if they could find work. All of which helped improve the quality of support we were offering. I also had a role in working with people’s families and saw how vital the day services were to give family carers a break.
I loved this job too, but despite the improvements, the service always felt very institutional. The small areas of progress we made were set against the backdrop of cuts, which put pressure on the our able to deliver more individualised support as posts were cut or frozen. Additionally, I found that when things went wrong, such as allegations of abuse, the organisation was unable to deal with it properly. In the time before safeguarding, these were handled badly and I was left with a sense that the people I worked with had few rights. Eventually, worn out with stress I left the job and took a year out, uncertain if I could continue to work in such a toxic environment.
By the time I returned to Southwark in 1992, everything felt different and much more optimistic. I took up the post of an information worker for people with learning disabilities for a project that was funded by a three year Department of Health grant. I was tasked with identifying how to make information more accessible, at the same time as a new self advocacy group was setting up in Southwark. It felt like a new era was opening up, where people with learning disabilities were beginning to be taken seriously and it was exciting to be part of it.
My new post was sponsored by Southwark Consortium (now Choice Support), a former housing organisation which had been at the forefront of the closure of Darenth Park Hospital that had recently taken over services run by the local health authority. I was impressed by the commitment and values of the leadership team (including Steven Rose and Simon Duffy) who drove through an exciting programme of change that included person centred planning, supported living, user and carer involvement, complaints systems, all of which were very new at the time.
Person centred planning was a particularly important because it showed me that freeing individuals from institutions was not enough. Enabling people to live in the community was not enough. We need to also ensure we listen to each person and create support services that specifically match their individual needs and aspirations, rather than slotting them into services that already exist and hope that will work.
When the information project ended, I moved to Southwark Consortium, to develop the concept of individual contracting introduced by Simon Duffy. Sadly, the idea was ahead of its time, predating direct payments which could have helped it work effectively and so it petered out; although Simon was later to develop this vision, which led in time to the development of self-directed support as a national strategy.
Over the next three years, I moved into contract management, working with providers to ensure they delivered good quality support. During that time we further developed ideas around quality monitoring, user and carer involvement and saw self advocacy and accessible information strengthened. In addition, over this period, we had seen the development of a specialist learning disabilities care management team, which was enabling more people to leave their family home, and gain the support they needed.
Throughout this time, we were constantly challenged by a number of pressures that pushed us back to institutionalisation. Firstly, many of the staff working in services had begun their careers in the long stay hospitals, some still struggled to adapt and the challenge for senior leaders was to instil a different set of values and work practices. This could be particularly difficult with teams that were often led by former charge nurses who didn’t always understand what was needed. Making such cultural change proved to be slow.
Secondly, we rarely received full inflationary increases from our funders (the Health Authority and Social Services) so each year we negotiated ‘efficiencies’ with providers who had to deliver a little bit more, for a little bit less in the context of rising wage bills. Thirdly, the new vulnerable adults guidance, whilst intending to protect, sometimes did the opposite as social workers could take black and white positions on complex situations that needed a more nuanced response. Nonetheless, I felt that these years were marked by progress and positive change.
As I left Southwark in 1997, I was pleased that the onset of joint commissioning meant that combined social and health care teams would ensure people getting a coordinated holistic service. I was excited to be taking up a post of joint commissioner myself.
I arrived in Camden in 1997, a new borough, and in a totally new role of joint commissioner with strategic responsibility for health and social care funding. This was the first step to pooled budgets, and was the first time health and social care were managing their finances together. It enabled us to set up combined community learning disabilities teams, where an individual could receive social work, care management and healthcare support in one place. It enabled us to bring social and health care money together strategically so that we could cut down on duplication, stop arguing over who funded certain projects, invest in new developments and manage resources more efficiently.
As a result we were able to develop plans for modernising day services, to ensure they offered real educational and work opportunities, and weren’t simply places people went for the day. We worked on a health strategy to improve people’s experiences of healthcare. And we worked on a mental health strategy that was focussed on as much support being offered in community settings as possible, that minimised stays in the acute ward, and that reduced the numbers of people living in long stay continuing healthcare settings.
Camden was another area that had been at the forefront of hospital closure and was developing supported living (where people were tenants or owners of their homes and support was provided separately). There was still some way to go to ensure all services were person centred and we worked hard with our providers to keep pushing for changes that gave people more control. Whilst the majority of services were supported living, we struggled with a backwards looking registration unit who refused to deregister some of our residential care homes, but still these years were marked by positive change. This was particularly aided by the new Labour government investing in public services after years of neglect which enabled us to develop Community Learning Disabilities Teams, strategic roles that could enhance services (e.g. day services development), preventative work such as travel training, advocacy services, carers’ support, as well as increasing the amount available for direct provision.
The publication of Valuing People in 2001, to mark 30 years since Better Services for the Mentally Handicapped was also welcome. This new White Paper set out an ambitious plan to take services into the 21st Century. It was based on the principles of rights, independence, choice and inclusion and setting out ambitious targets to improve services for children, support for carers, improving health, aspirations around housing, fulfilling lives and employment, developing quality services and creating partnership. It was exciting to see issues that many of us had championed for years becoming government policy and by the time I moved to Essex in 2002, I felt we’d come a long way from the institution.
My time in Essex, did disabuse me of this notion somewhat, as supported living was in short supply, large numbers of people lived in big residential hostels, and attended day services resembling the old place I’d worked in in Southwark a decade before. There were many senior managers keen on change, and pockets of good services and an emerging vision for a better way of working. However commissioning and contracting were separate, so, unlike in Camden, I had no contractual relationship with the providers of services which made it almost impossible to effect change. Furthermore although nurses worked alongside our care management teams, other health teams were on separate sites leading to a lack of joined up working. And, in the absence of joint commissioning and pooled budget arrangements, the relationship with the health authority was combative.
I wasn’t in Essex long, but as I was leaving, a move to joint locality teams, and greater working between health and social care, and a plan to transform day services was underway, all of which would improve matters I hoped.
Although these were good years, with marked improvements – more supported living, stronger self advocacy, safeguarding to prevent abuse, employment and education initiatives, the fight against institutionalisation was never far away, and money was always a challenge. In my experience, there never has been quite enough to go around, and with increasing numbers of people living with complex needs, it was always a struggle to maximise resources. Even in the years of plenty, this was an ongoing challenge.
For the next two and a half years, I took a career break to care for my then small children. However, I was inspired by the work Simon Duffy was doing to develop self directed support as part of the In Control project. When I returned to work in 2006, as a care manager, just after Putting People First was published which put self-directed support at the heart of social care, I had high hopes for a new way of working.
However, when I took up my post, it was to discover that senior managers were not making self directed support a priority. Furthermore, though we had some good local services, I was disappointed to come across staff teams who were still quite institutional in the way they worked (e.g. talking over service users’ heads, having the TV on to the channel of their choice not the tenants etc). However, there was an excellent ethos with the Community Learning Disabilities Team I was in, a great deal of knowledge of people and a commitment to ensure service users were properly supported either in the family home or in their supported living service. Over time I discovered there was a great self advocacy group, My Life, My Choice, some excellent day service projects and an accessible information worker tasked with making documents Easy Read (which was something I’d recommended back in 1994).
When I moved into the Commissioning and Contracting Team in 2007, I found another close knit team and discovered group of people across Commissioning, Contracting and Care Management who were committed to all the things I was committed to and had a remarkable knowledge of individuals and services. Thus at our regular funding panels, if an individual’s name was put forward, the chances were someone in the team knew them well and could confirm the proposals being suggested or query a suggestion that didn’t seem to be the most effective solution.
The team was very creative, particularly when faced with bureaucratic barriers. For example, when we were forced to use procurement to choose service providers we worked hard to ensure users and carers were part of the decision making. And when self directed support finally arrived, we promoted direct payment options as well as developing a unique system of procurement that placed the final choice of provider with the people who used the services and their families.
As with other areas I worked, things weren’t perfect – our reliance on supported living meant that we couldn’t always manage things when a service broke down and we were always running to catch up with ourselves to develop enough appropriate housing in an area where it was expensive. As a result, we did end up seeing people leave the county to live in residential services elsewhere. And whilst we had many creative providers, there were still many who provide old fashioned models of support. And as always, we struggled with decreasing funding and increasing need, something that became even starker when austerity struck.
When George Osborne announced his first budget in 2010, we were all filled with gloom in Oxfordshire, we knew that the 28% cut to local government funding would hit social care hard. Over the last few years we had become adept at using a combination of reassessment, alternative technology, informal supports and clustered support to reduce the costs of service, but this level of cuts would inevitably result in a deterioration in the quality of service. The council had already merged many back office functions so we knew there weren’t many places to reduce funding without it having a major impact.
The first things that went were developmental roles – posts that were about pioneering ideas rather than direct service provision, whose absence lessened our ability to innovate. These were followed by restructures at senior management level which resulted in key staff being moved around to be replaced by leaders with less knowledge of our service. Then came the restructure of commissioning which broke up our successful team and split us off from care management. It became harder then to coordinate services in the way we had wished. It became harder to get decisions on developing housing projects, our savings targets were increased to such an extent that by 2013/4 we were being asked to cut the money available to services by 10%, at a time when care management teams were being scaled back. As a result care managers case loads increased, care packages were lower meaning individuals had fewer hours of support. Providers constantly cut their costs, so that managerial levels were stretched. In 2006 it was common for organisations to have leaders who managed no more than 8 people, by 2014, it was often 15 or more.
Meanwhile, following a couple of high profile critical incidents, we experienced a counter pressure to manage risk more effectively. Whereas quality monitoring had largely been about people’s life experiences and the outcomes they wished to achieve, there was a greater and greater emphasis on managing risk and avoiding harm.(e.g., senior managers demanding we put safe bathing notices up in people’s bathrooms within their own homes). We were presented with an impossible demand, to both keep people 100% safe and minimise costs, neither of which was achievable.
And so, in 2014, I left. In 1990 I felt burnt out and exhausted, but in 2014, I felt everything I had worked for over the previous 30 years was going backwards. Services were no longer able to provide enough formal and informal supports to do anything other than keep people safe in their own homes. The ability for people to participate in community events, to develop life skills, get a job was reducing and I felt no longer able to be a part of that. Whilst I was pleased to see person centred purchasing still goes on in Oxfordshire, the recent separation of the health and social care teams, and the return to generic social care means a loss of expertise and understanding which will not serve people well in the future.
In 1984, I celebrated Doris’ 51th birthday the week I was 19. At the time, she often burned with rage at the way she’d been treated. This year on my 51st birthday I thought of her, when I picked up a newspaper article to discover that social care cuts in Oxfordshire had left a young man at home with no-one but a disabled mother to care for him. The advice he’d received from a care manager to urinate in an urn, filled me with rage. This week Community Care published an article about the effect of cuts on learning disabilities services in Oxfordshire. The budget is now 20% less than it was at the start of austerity and all the tremendous progress we made has gone backwards. We are in a worse place then when we started.
This is just one person’s experience of one area of social care, in one part of the country that is relatively well funded compared to others. I know from reading the newspapers, social media and contacts elsewhere that these stories are being replicated up and down the country. Austerity has made it impossible for social care providers to deliver support according to the values I described at the beginning. Austerity has made it impossible for local authorities to deliver strategies that ensure personalisation and control. To make up for this colossal neglect, social care services need urgent investment immediately. Otherwise, things can only get worse and bad institutions will be the only support available.
The publisher is the Centre for Welfare Reform.
A Career in Adult Social Care © Virginia Moffatt 2016.
All Rights Reserved. No part of this paper may be reproduced in any form without permission from the publisher except for the quotation of brief passages in reviews.