Care in the crisis

Community Living 

Community Living

— Summer 2020

Dealing with the turmoil wrought by Covid-19 has been like sprinting through a marathon, says Mandy Crowford, who reports on keeping services going during lockdown

As I write this, I am mindful that we have a way to go yet we have achieved so much already, and I wonder what my reflection will look like in a month or a year from now.

I am fortunate to work for an incredible organisation – the Westminster Society for People with Learning Disabilities – which is truly values based, not only in words but also in actions. Most of the senior team had worked together during the H1N1 influenza pandemic and we started our Covid-19 journey with a business continuity plan firmly established and a level of confidence that told us that we would be OK and we knew what we are doing.

I began my marathon run in mid-March. The reality of what was coming had started to hit home. The idea of social distancing was a vague notion coming from overseas. Our first week of planning was spent in our meeting room with the senior management team of six working through our Covid-19 organisational risk assessment and challenges we could face.

This came to a halt on Friday, when one of the team felt a bit “off”. One Covid-19 positive director and, five weeks on, we have seen each other daily using teleconferencing and continued in this way, planning and troubleshooting our way over new hurdles as they appear.

 

Seeking ‘legitimate’ PPE

The lack of personal protective equipment (PPE) soon became the thing that kept me awake at night and meant that I had to hit the organisational credit card hard for anything that looked legitimate. It was also very difficult to navigate PPE supply processes via clinical commissioning groups and local authorities as each had their own systems.

Our lack of a central purchasing system worked to our advantage and meant we had to spread purchasing across the whole senior team, which allowed us to set up multiple accounts and secure a wide range of suppliers within the supply chain. We centralised the storage and distribution of PPE. I am writing this sitting at my new desk in what was once an activity room; it is now our store room where I issue PPE to our services as needed. From here, I can monitor use and get PPE out to where it is needed quickly and efficiently.

The advantage of central distribution is that I and other members of the senior team have become our couriers. This means we are out and about and visible to all our services. This connection with the teams has been welcomed and reassuring for morale.

On the Easter weekend, chief executive Gabby Machell and I were out delivering PPE. This was a practical demonstration of solidarity as well as meeting a need. We also had to manage constant requests for information from absolutely everyone, including housing associations, the Care Quality Commission, clinical commissioning groups and local authorities, all wanting information in a variety of formats and by different deadlines. Our pleas for a single system were met with sympathy but were rejected, and we continue to struggle with this every day.

 

Securing food

Battle number two was for food supplies. Usually, the people we work with do their own shopping and make their own choices, with support from staff as needed. As the lockdown began, all of this went out of the window. We bought second hand chest freezers and set up a food bank. We stocked this with donations from local businesses, hotels and a West End casino. We also established links with catering suppliers and wholesalers. We delivered food to services every day.

We noticed a change in some eating habits, especially as a result of the casino donation, which meant many people had a change from their usual meals and were eating lobster and duck à l’orange instead.

As lockdown bedded in, we realised supermarkets were not recognising the social care workforce. We contacted all the major stores, going directly to their chief executives. We contacted all our local branches too, arguing the case for our staff and the need to get food supplies to people living in our services. We had some successes and matters have improved.

 

Keeping staff safe

Getting the right information out to our staff about the pandemic and how to protect themselves and the people we support was a priority. In the early days, the lack of information was a real problem. Using our internal contacts, we secured the support of a senior nurse working in a London hospital who helped us think through the issues.

This resulted in a social-care friendly training video on donning and doffing PPE for staff and guidance and instruction leaflets. We set up PPE and hygiene stations in services, using camping tables, which were a perfect and creative solution to minimising cross infection in our very small, homely care services.

Our lack of PPE made us more creative. We sourced protective eye goggles from building contractors, sterilising fluid from a home brewing company and gloves and aprons from the motor industry. Our training department set up daily contact with services, working through infection control issues and ensuring the information got through.

Our senior managers set up daily contact schedules with those managing services to troubleshoot emerging issues and ensure all the right procedures and working practices were in place. We assessed each service for critical levels of staffing required to ensure the health and wellbeing of the people we support. Our HR team set up systems to support and track staff with symptoms or who needed to self-isolate and/or shield.

Some of our staff in high-risk groups were required to self-isolate for 12 weeks while others were able to work from home. This group of staff have taken on delivering
telephone support to people with learning disabilities living on their own or in the family home. They also provide daily telephone teleconferencing contact with support, activities and resources for people struggling with the lockdown.

Some staff members were naturally anxious about coming to work so our HR team talked through their fears and concerns and, in many cases, these issues were resolved. The numbers of staff off work were updated daily and communicated to the senior team. This meant we were able to send out daily updates to services about staff availability and, as a result, could allocate staffing when and where needed.

 

First case

We then had our first confirmed case of Covid-19 in a service user. We were devastated. Then, two more people were confirmed to have the disease in another service plus a further three had symptoms. Sadly, one person died in hospital. This had a huge effect on the people he shared his home with, the staff team supporting him and the organisation as a whole. As part of our weekly teleconference meeting with our managers, we shared the sad news and, even though we were communicating this to faces on a screen, the effect of the news was palpable. This horrible thing was now a reality.

Over the next few weeks, our service users with Covid-19 began to recover. Two returned to their homes from hospital and we set up a recovery/convalescence service in an empty property for a person who was so traumatised by her experience that she needed time and support before returning home.

The visibility of our senior team and our ability to communicate with people across the organisation have been vital. Teleconferencing has been good for morale and motivation. Seeing teams putting procedures, systems and working models into practice and the care and dedication shown to the small number of people who have been sick with this virus fills me with pride.

Most of our staff have been incredible. We are finding heroes in our teams and managers every day, and it makes things a little better for us all when we know that we are in this together. Letters of thanks from our chief executive to staff and gift packages for workers and homes from charitable donations have given morale a much-needed boost. Our weekly updates with managers are the times we know if we are getting it right or not. We have many moments of joy and pride at how people are keeping things going, which spurs us on for another week.

However, our work is not all pride and joy. Frustration and anger are also part of the daily yo-yo of emotions we all go through. All of us are frightened and worried at times, and confident and optimistic at others. It would be untrue to say that everyone has been on the same page throughout.  We have seen some staff behaviour that does not fit with our values (but these are definitely the few exceptions). The vast majority of our staff have been wonderful. On my food and PPE delivery runs, the level of optimism and commitment from staff and the people using our services has been a pleasure to witness.

 

Care sector proves critical

Thankfully, testing our staff and people using our services for the virus has become a government priority. However, we did have to deal with pressure to admit people to our services without prior testing and isolation. Our insistence to the NHS and commissioners that this was not acceptable did, we hope, save lives.

In addition, along with our care and disability partners across the country,  we pressurised decision makers to  ensure the care sector was recognised as critical to shielding the NHS and the country as a whole and therefore our staff deserved equal status with our NHS colleagues.

However, managing the additional information flowing from the government and our local authority and health partners, which includes government policy changes, continues to be difficult. Most of this information and guidance does not really reflect learning disability services, supported living models, or the use of language, settings and imagery. This has meant we have had to interpret what is being said and convert the information into something that makes sense to our staff. This has added to our workloads enormously.

So, like everyone else in the country, we wait each day for the government’s daily briefing. This triggers a flurry of thinking about its impact and an agreement on the actions we need to be taking as a result. Each week, something new is conveyed and we are back to the early days of our planning through organisational risk assessments to make sure we think through each change and how it affects us as an organisation as well as our workforce and the people we support.

 

Anticipating the exit

We are starting to think about the exit and what this might look like in the coming weeks and months: the staff vacancies that still need filling, the training we still need people to access, the voids we need to let, the tender that is going live and will need writing and hopefully delivering on, the incidents that need investigating, the funds that need to come in, our social media presence to keep us visible and part of the conversation, the reduced lockdown and increased risk of infection, and the funeral for the one person we have lost that needs organising.

I wonder: can I carry on sprinting when we have come so far but still have so far to go? I am not the only one sprinting – this whole organisation is running at top speed and we are all having our personal and professional moments of struggle.

We will need to take a break soon. We all will. How and when is not yet clear. What we will be like in six months is hard to anticipate. What I do know is that our organisation has put people first and I work with a team who share the work ethic and commitment needed for this sector.

That is why the cancelled leave, and weekends and evenings spent working are worthwhile. I will do the same tomorrow and the next day and the day after that until we are through this and the finish line is in sight.

● The Westminster Society for People with Learning Disabilities: www.wspld. org.uk. The society is changing its name to London Living

Review: first history to cross the continents

Community Living 

Community Living

— Summer 2020

Intellectual Disability in the Twentieth Century: Transnational Perspectives on People, Policy and Practice Jan Walmsley and Simon Jarrett (eds) Policy Press, 2019, 216 pp, hardback £75; e-book/paperback (January 2021) £26.99

This book, edited by Jan Walmsley and Simon Jarrett (editor of Community Living), is a remarkable achievement. As they say in the introduction: “We believe it is the first of its kind to take a historical view of policy and practice in intellectual disability across continents, and we are certain it is unique in its emphasis on the impact on individuals.”

It covers 12 countries: Australia, Austria, Czechoslovakia/Czech Republic, Ghana, Greece, Hong Kong, Hungary, Iceland, New Zealand, Taiwan, the UK and the US. Contributors tell their countries’ stories, examining major changes in policy and their effects on people with intellectual disabilities and their families. They were also asked to tell life stories, where possible with the voice of the people themselves.

Although the chapters are very different, there are some common themes. The stain of the “science” of eugenics, first advocated in 1863, was strong in the Anglosphere and much of Europe. The chapter on Austria illustrates how the nadir was reached by the Nazis. Sterilisation and extermination of the “unfit” and “unworthy” were the most extreme examples of the drive to manage and eliminate lives deemed to have no value. It was only in the latter part of the century that sustained efforts started across the world to move away from institutionalisation (and worse) to valuing people.

The chapter on Ghana shows the calibre of the contributions. There had been no authoritative history until now  – the condition barely had a name in the country until the late 20th century. The unrelenting negative view of intellectual disability has its roots in spiritual beliefs. For example “those with Down’s syndrome are labelled ‘nsuoba’ meaning spirit or water children… A child born with disabilities in a village would often be left to die in the bush or by the river. This was seen as allowing the child’s spirit to return to the spirit realm, so it could be reborn in a ‘proper’ body”. The chapter tells us that, regardless of which gods are worshipped, disability is seen as a punishment and a reason to exclude people, especially those with intellectual disability, from community life. “Change has been spearheaded by parents. Parent organisations… have  been a mainstay of support and advocacy [and] educating and supporting parents themselves,” the chapter adds. My one reservation is about the cover. I suspect the publishers thought a headless woman holding a grey balloon would say something about how intellectual disability is perceived. I was just perplexed.

As a child in the 1950s, I remember the secrecy and whispering about a local family whose “mentally handicapped” child was sent to an institution. I understood it was something that brought shame on the family – it could only be seen as unfortunate. When, in the 1980s, we discovered my 15-month-old daughter had a learning disability, I had to deal with my own prejudices as well as those I was to encounter from others. Reading about the experiences of many thousands of people who have suffered greatly has been distressing, but it has helped me understand the weight of those prejudices; they are still around us, are universal and, as we know only too well, there are many battles still to fight.

Clare Palmer

Living in a cotton wool cage

Community Living 

Community Living

— Summer 2020

A lot of people with learning disabilities in Malta are restricted in what they can do, because their families fear for their safety. Isabel Bonello and Anne-Marie Callus examine the causes and consequences of overprotection and what can be done to address it

Worried families are being overprotective, which is limiting the independence of people with learning disabilities in Malta, our research has found. We carried out an inclusive research project, with Anne-Marie Callus as the main researcher and Isabel Bonello as the co-researcher, who chose the subject of overprotection. This was because a lot of parents fear letting their adult children with learning disabilities go out on their own. Even at home, they are afraid of letting them do things by themselves, such as cooking or using the washing machine. Ten focus groups were held: three with people with learning disabilities; another three with parents of people with learning disabilities; and four with staff who work with people with learning disabilities. We asked them about work, going out with friends, intimate relationships, public transport, managing money and using mobile phones.

 

Work

Work is important because it allows you to contribute to society, learn things, meet people and earn money. Some people in Malta with learning disabilities work full or part time. Many others attend day centres, and some stay at home for most of the day. Several things assist people to find a job and keep it, such as being able to keep their disability allowance even when they work and having job coaches paid by the government to help them learn how to do their work. Making employers have a minimum percentage of disabled people on their staff also helps. Some people with learning disabilities are happy with their job but others have problems, such as being given repetitive tasks, having a good relationship with supervisors but not with some colleagues, or not being given enough support to learn how to do a job well. Issues like these can mean they have to stop working.

Another problem is that people can be placed on a training programme but, when the funding for the scheme stops, they are not kept on by the employer. Some people with learning disabilities never manage to get a job because they do not find one that is suitable for them. Also, some parents think their sons and daughters are not capable of working or that they will not be treated well if they do. Employers may be willing to employ people with physical disabilities but not those with learning disabilities. Finally, people with learning disabilities may not be able to use the bus on their own nor have any other means of getting to and from work.

 

Social life  

Going out with friends is important for everyone. You can interact with other people, enjoy yourself and be more independent from your family. A few people with learning disabilities in Malta do go out on their own. They know how to use buses and meet friends. Others are able to travel by bus but do not have friends to meet, so they only go out with their family or for activities run by voluntary groups they belong to. Some people do not go out because they cannot use the bus or do not have enough money to spend while out with friends.

Many parents would like their daughters and sons to go out, but worry if there is  no one to take care of them. They also  worry when they go out with someone  who is not employed to work with people  with disabilities. On the other hand, if there is a person in charge they trust, parents allow their sons and daughters to go out. Very often, it is parents who make decisions on socialising. People with learning disabilities would like to do the same things as others of their own age. They like going out with people with learning disabilities, but sometimes do this because they have  no other choices. They do not always  find different people to go out with and, when they do, others do not always treat them well.

The research participants said people with learning disabilities need support to be able to go out, and that society needs to accept them. In this way, they can be included.

 

Intimate relationships

If a person with learning disabilities wants to have an intimate relationship, it is important that they are given the support they need to do this. Having a boyfriend or girlfriend means having a special relationship with one person, and it  helps individuals become more independent. People with learning disabilities do have partners. Some meet each other regularly, but others meet only at the day centre or when a voluntary group organises an activity. Many of these relationships are not taken seriously by others.

However, there are also parents who are supportive. One father said he and his wife would like their son to get married but his girlfriend’s parents do not want this. One mother said they gave their son a lot of support to be able to meet his girlfriend. For example, since he cannot tell the time, if he is going to be alone in the house when it is time for him to meet his girlfriend, his mother sets the alarm for him.

 

Using public transport

Being able to use the bus is very important because it allows people to  go to work, visit different places and  meet friends. Some people with learning disabilities use the bus on their own. However, many do not, and can find it difficult to learn this skill. There are parents who do not want their adult children to be on the bus on their own because someone may treat them badly. One mother mentioned that her son forgets to get down at the bus stop that he needs. Then he gets lost and finds it difficult to tell his parents where he is.  For this reason, he can go out in his neighbourhood on his own but, if he wants to go further, one of his parents or his sister gives him a lift.

 

Managing money

Being able to manage money allows people to buy things they want and  save for the future. Some people with learning disabilities use money on their own, but many need help because they do not understand the value of different notes and coins, or because they cannot check change. One mother taught her daughter how to use a debit card so she does not have to check change. Another mother said her son likes coins because they are heavier and he thinks he has a lot of money. One person with learning disabilities said he preferred having his dad going with him to the bank because he does not understand everything. Others said their parents gave them enough money, but some said they were not given enough.

 

Mobile phones

Mobile phones are an important way to keep in touch with family and friends. Many people with learning disabilities use them, but some have a mobile phone only so that they can contact family members when they go out with friends. In some cases, parents call them a lot when they are out – and people do not like this. One person said, when he is out with his girlfriend, her mum keeps calling. Some people phone their parents once when they are out, just to let them know they are fine.

 

Lessons from the research

There are many things that can be done to avoid overprotecting people with learning disabilities. First and foremost, people with learning disabilities should be treated with respect, and they also need more support from personal assistants so that they can go out more often and do what they would like to do. Parents too need support so they do not wrap their adult children in cotton wool. Our research found that there are parents who find ways of supporting their sons and daughters to do the things they like to do. We believe that it is the right of people with learning disabilities to be as independent as possible. From this research, we learnt many people would like to do more things on their own. It is clear that to become independent, people should be given support to learn how to do things on their own, such as housework, managing money and using the bus. If they could do these, they would not need to depend on their families all the time.

● For more about the research and to download the full Inclusive Research Project About Overprotection in the Lives of Persons with Intellectual Disability in Malta report and an easy-ready summary, visit https://tinyurl.com/ybaywgag

Isabel Bonello is an office support worker at the Commission for the Rights of Persons with Disability. She delivers talks about self-advocacy and participates in inclusive research at the University of Malta; Anne-Marie Callus is senior lecturer at the Department of Disability Studies at the University of Malta. Among  other work, she teaches and carries out research with people with learning disabilities and is a support member of a self-advocacy group

 

 

Route to finding a sense of place

Community Living 

Community Living

— Summer 2020

Feeling connected to others within a community and action to create an inclusive society were key themes of the Learning Disability England conference. Sue Pemberton was there

It seems a long time and almost another world since the Learning Disability England conference took place on a sunny February morning in Manchester. The theme was “Including everyone – what next? How do we build on what is working now?”

There was a positive buzz at the event. The line-up was excellent and many parts of the learning disability community were represented, including self-advocates, providers and local authority  representatives. There were notable speakers and a variety of workshops where people could share viewpoints and discuss issues for campaigns.

Ideas were pooled on maximising health, both physical and mental, as well as on developing a stronger voice in campaigning for change. Innovative practice from around the country was shared. The main themes – “belonging”, “community “, “connecting”, “achievement” and “place” – all raised strong feelings. These can each be achieved in many ways. Place matters and, while this is different for each person, belonging is achieved through being part of a community, which enables individuals to reach those goals.

Isabelle Garnett talked about the #Human Too and Homes Not Hospitals campaigns. We heard about how many people with learning disabilities are being denied the opportunities we all seek,  and are being held in hospitals and assessment and treatment units with no sign of being discharged. These people are denied a life in the community, the complete opposite of what everyone says they want.

 

Talking points: justice to service design

Highlights of the discussions included:

● How “civil society” based on justice and solidarity needs people with learning disabilities to be in the room

● Services need to be designed by those who will use them – Hammersmith and Fulham Council employs a co-production commissioner for example

● A discussion about innovative software that helps people to control their personal plans, goals and aspirations

● How the Reach standards can help people decide who they live with, how they are involved in their community and how they exercise their rights.

● Speakers from L’Arche communities describing how people with and without learning disabilities supported each other by living together and sharing life experiences.

● KeyRing Living Support Networks talked about connection within communities through breaking down barriers and celebrating skills and talents

● The Thera Trust group spoke on employing people with learning disabilities in management roles.

A lot of good organisations and groups are out there doing pioneering work to achieve belonging, but challenges remain. A group of self-advocates closed the day with this resounding message: “We want what everyone wants – a home, fun, a sense of belonging and a sense of who we are. “We are all in this together and we want to be equals. We must be seen as part of the solution – we are not the problem. “We just need some help along the way to achieve some of it, to be part of our community, for people to listen to us, to believe in us. We are on the road, there is a long way to go, but we know we can do it.”

● Learning Disability England and the conference: https://tinyurl.com/yb6mec5r ● Reach standards: https://tinyurl.com/ y9pjp7ay

Sue Pemberton is chief executive officer of Integrate https://integratepreston.org.uk´

Evidence on self-advocacy groups

Community Living 

Community Living

— Summer 2020

What difference do self-advocacy groups make to the those who take part in them? Liz Tilley, Jan Walmsley, Iva Strnadová, Joanne Danker and Julie Loblinzk reviewed the literature

Self-advocacy, an organised activity in which people with learning difficulties participate in a structured group or organisation, is commonly described as a space in which people “can develop not only their confidence, skills and leadership capacity, but also a collective identity, providing an essential foundation for grassroots activism” (Tilley, 2013: 470).

It emerged in Scandinavia, North America and the UK in the 1980s in response to deinstitutionalisation (Buchanan and Walmsley, 2006) and more recently again in response to inequalities, citizenship, abuse and economic austerity (Walmsley, 2020). Subjective wellbeing – an individual’s feelings and perception of their life – is increasingly being looked at when determining the progress of society and assessing overall quality of life (OECD, 2013). Not only is high subjective wellbeing desirable, but also there are associated benefits to health, income, work productivity and social behaviour.

However, researchers have rarely looked at subjective wellbeing and participation in self-advocacy, which is what our review sought to do.

 

Findings

Taking part in self-advocacy organisations had positive impacts on all four aspects of the dynamic model of wellbeing: external circumstances; personal resources; functioning and satisfying needs;  and good feelings of happiness, joy  and satisfaction.

 

External circumstances

Being involved in self-advocacy groups opened up the outside world, providing:

● The ability to make new friends and expand social networks

● Opportunities for work, paid and unpaid

● Access to information and resources

● Help to change external conditions (eg housing, relationships and work).

“There’s always something going on here. Outside, at home, there’s nothing to do. It’s really, really boring.” Anderson and Bigby (2017: 115)

 

Individuals’ personal resources

There were benefits for individuals. Groups:

● Help increase self-esteem and people’s confidence to speak up for themselves

● Allow people to gain skills and knowledge

● Change how participants think about themselves.

“Trish defined a self-advocate as a person who can ‘just stand up and  be counted, that’s how I feel. I really  can do that’.” Anderson and Bigby (2017: 115)

 

Functioning and satisfying needs

Building on personal aspects, organisations:

● Offer connectedness with peers

● Boost confidence to take control and fight for their rights

● Increase competency through involvement with others

● Provide a safe space to try new things out, including various social identities.

“That was one of my first national experiences… I guess that was one of the first times I realised that there are a lot of people in this world with disabilities and a lot of us have the same stuff in common.” (Caldwell, 2011: 320)

 

Feelings of happiness, joy and satisfaction

Groups boosted mood, making people:

● Positive about being self-advocates

● Feel respected and valued

● Happy from doing things that mattered to them.

“Gosh, it really gave me a new way to think about myself. I love myself. I am not saying I am perfect. Nobody is perfect. I really like the person I see in the mirror. I hope to convey that to other self-advocates… It really did change my life.” Caldwell (2010: 1008)

 

Other themes: reflections and drawbacks Sometimes, self-advocacy provided a safe space for people to discuss and reflect on experiences of bullying and victimisation, enabling them to view their experiences as part of a system of oppression. While self-advocacy was found to help people in many ways, there were some negative impacts. These included managing others’ concerns because some people feared that an attempt to take more control over their lives might be met with hostility by families or professionals. Self-advocacy can stir up memories and comparisons with the past, and feelings of anger can emerge as people become more aware of social injustices. Some studies identify a vulnerability that can come from forging a new identity via self-advocacy. It should also be noted that self-advocacy is not always accessible to people with substantial support needs.

 

Impact and implications

Overall, our assessment concludes the benefits of self-advocacy groups for the wellbeing of people with learning difficulties outweigh any disadvantages. This is important for commissioners, service providers and families to acknowledge especially as services recede and the progress of inclusion is slow (Power et al, 2016; 2018).

More studies are needed to better understand self-advocacy and its effects (especially from diverse perspectives)  and about the impacts of different self-advocacy models.

 

Liz Tilley and Jan Walmsley are at the Open University; Iva Strnadová and Joanne Danker at the University of New South Wales; Julie Loblinzk is at the University of New South Wales and also a self-advocate at Self Advocacy Sydney

References

Anderson S, Bigby B (2017) Self-advocacy as a means to positive identities for people with intellectual disability: “We just help them, be them really”. Journal of Applied Research in Intellectual Disabilities; 30: 109-120.

Buchanan I, Walmsley J. 2006 Self Advocacy in Historical Perspective. British Journal of Learning Disabilities; 34(3):133-138

Caldwell J (2010) Leadership development of individuals with developmental disabilities in the self-advocacy movement. Journal of Intellectual Disability Research; 54: 1004-1014

Caldwell J (2011) Disability identity of leaders in the self-advocacy movement. Intellectual and Developmental Disabilities; 49(5): 315-326

OECD. How’s Life? Measuring Well-Being. 2013. Power A, Bartlett R, Hall E (2016) Peer advocacy in a personalized landscape: the role of peer support in a context of individualized support and austerity. Journal of Intellectual Disabilities; 20(2): 183-193

Power A, Bartlett R. 2018. “I shouldn’t be living there because I am a sponger”: negotiating everyday geographies by people with learning disabilities. Disability & Society; 33(4): 562-578.

Tilley E (2013) Management, leadership and user control in self-advocacy: an English case study. Intellectual and Developmental Disabilities; 51(6): 470–481.

Walmsley J (2020) From ‘nice to have’ to life saver. Community Living 33:2 2020: 23

Don’t count, don’t care?

Community Living 

Community Living

— Summer 2020

The rising numbers of deaths wrought by coronavirus in care homes shows vividly the low value still being placed on some people’s lives, writes Jan Walmsley

Thousands more deaths were added to the Covid-19 figures from late April – those who had died in “care homes”. This generic term is used by the press and officialdom to describe a place that is not a home but is outside hospital. From international comparisons rapidly assembled (Comas-Herrera, 2020), it appears that up to 70% of deaths in some parts of the world occurred in care homes. Although possibly flawed, this data is quite shocking, suggesting widespread “care-less-ness” about older and disabled people.

People with learning disabilities were a subset of this care home population. I have no idea how someone supported by a personal assistant who died outside hospital was counted, if at all. What I do know is that, contrary to official guidance, some youngish people with learning disabilities were automatically labelled do not resuscitate (DNR), regardless of individual potential to benefit from treatment. What I also know is that blindness to the deaths of people with learning disabilities has a long history, and this has consequences.

It was with this in my mind that I read Susanna Shapland’s moving piece When Mass Murder was Social Policy in the last issue. Let us not fool ourselves with the comforting thought that this did not happen here. It did – not in the stark way death was visited upon disabled people in Nazi Germany, but by a combination of neglect, failure to treat, care-less-ness leading to accidents and even, at times, outright murder. Just as many countries enthusiastically supported Jewish extermination, so they also joined in, less obviously, with a desire to reduce the “inferior stocks” and the “useless eaters”. Best known probably are the 20th century policies of sex segregation in institutions to prevent “breeding”, and the legalised sterilisation of thousands in many countries – not, formally, in the UK.

In Germany, there are now memorials. There are none here. The large institutions have been airbrushed from the landscape. Few even have anything to tell people that they were there.

 

Hidden hospital deaths

Yet they, too, were places of death. Some, like Harperbury Hospital in Hertfordshire, had their own crematoria. Many had their own cemeteries. They were not often (that we know of) settings of deliberate murder although this was not unknown (just read Allan Mayer’s 2008 novel Tasting the Wind). Yet the ravages of infectious disease seen in “care homes” this year were present in 1970 in overcrowded, understaffed and dirty wards, where around 50,000 people lived. Tuberculosis in particular wrought havoc.

We do not know how many people died behind closed doors back then – just as in 2020. In 2016, the Mazars inquiry into practice at Southern Health NHS Foundation Trust (Care Quality Commission, 2016) showed that unexpected deaths of older or disabled patients at the trust were not investigated. The 1969 inquiry into abuse at Ely Hospital near Cardiff noted an “unduly casual” approach to investigating deaths (DHSS, 1969: para 78b). Finding out about these deaths is far from straightforward. Many records were lost when hospitals closed. Most that remain are subject to the widely quoted 100-year closure rule, as they contain patient names. However, a potent source of information is the series of public inquiries of the 1970s.

One of these – the 1974 inquiry into South Ockendon Hospital – was prompted by an enrolled nurse who resigned after there were seven deaths in two months on the ward where she worked. She told the inquiry:

“It was getting worse on W [a ward]. The patients appeared to be dying one after another… It is how they went. How they were treated when they were dying or sick. This is what I am complaining about.” DHSS (1974): para 345

She was on night duty, expected to look after 60 older patients single handed, some with complex, serious health conditions and many with severe learning disabilities. In the same way, underpaid and underappreciated care home staff in 2020 have been struggling, behind closed doors, to provide adequate care for disabled and older residents during a pandemic, with neither medical support nor protective equipment. South Ockendon and Ely were not unique – there were many other death scandals in hospitals.

Why remember this awful history now? Because there is absolutely no room for complacency and believing that eugenics was a Nazi aberration, safely buried in an increasingly distant past. It is and always has been alive and well and lurking in our society.

A crisis like coronavirus shows vividly how some people’s lives are undervalued. No one was counting in the past and, unless we shout really loudly, no one will count now.

● Thanks to Pamela Dale for her thoughts and insights on this topic

Jan Walmsley is an independent researcher

 

References

Comas-Herrera A, Zalakain J, Litwin C, Hsu AT, Lane N, Fernandez-Plotka J-L (2020) Mortality Associated with COVID-19 Outbreaks in Care Homes: Early International Evidence. https:// tinyurl.com/rgq7747

Care Quality Commission (2016) Report on Southern Health NHS Foundation Trust DHSS (1969) Report of the Committee of Inquiry into Allegations of Ill-Treatment of Patients and Other Irregularities at the Ely Hospital, Cardiff. Cmnd 3975. London: HMSO DHSS (1974) Report of the Committee of Inquiry into Allegations Of Ill Treatment Of Patients at South Ockendon Hospital. HC 124. London: HMSO

An eye-opening life in lockdown

Community Living 

Community Living

— Summer 2020

Suzanne Gale experiences the best and the worst of providers, has to show she’s not a robot to secretive companies and looks into the lives of young people on TV

As someone who enjoys a challenge and the pressure of hitting the ground running, I have to admit that I found the first week of this lockdown quite fun. I was up and in my home office bright and early, webcam at the ready, to attend the early meeting where we’d discuss the latest government guidance and address the new round of problems to solve. But it’s got so real now and I can sense that those working behind the scenes feel increasingly powerless. Of course, we’re not dealing with the front line and I wouldn’t begin to compare our situation with that of a care worker or nurse.

Yet, as we try to make limited funding stretch and take another call about another death, it’s a low-level, relentless stress that can be seen in people’s faces during the video meetings we have to stop us feeling too isolated and to keep us putting faces to names.

 

Wheat versus chaff

If there’s one positive thing to come out of the Covid-19 situation, it is that providers have shown their true colours. There has been a clear line between those that instantly demanded a huge amount of money with a threat of downing tools if this was not forthcoming and those that took stock, thought about
the bigger picture and asked the local authority for a reasonable, transparent contribution to keep their service users and staff as safe as possible.

The best providers have worked in partnership with families and funders so we can all do the best we can. For years, I’ve been either requesting or agreeing to contingency costs depending on which side of the negotiation table I’ve been on. If ever there was a time to use contingency funding, a pandemic is definitely it. Sadly, some are too worried about their bank balance and stakeholders to use it.

 

I, robot?

I’ve become increasingly aware that only very rarely will anyone give me any information about a specific member of staff in an organisation over the phone. I’m generally asked to send an email to something like info@… Sometimes I get a helpful response – often I don’t.

If I try to use a website, this has often led me back to the info@ scenario, which is annoying. Even more frustrating has been when my only option was to use the website’s contact form. This requires me letting them know where I found out about them, who I work for, whether I want to receive any other information from them and, if so, whether I’m interested in fundraising/good news/bad news. Then I also have to prove I’m not a robot by clicking on numerous images that either do or don’t have a mountain in them. How is this accessible?

 

Normal, sad and happy

There’s some inspirational representation going on TV-wise. Although I felt completely wrung out by the emotional rollercoaster of Channel 4’s Born To Be Different, this was probably  my favourite visit to the young people as they were entering a world of adulthood, less protected and really growing into themselves.

Yes, we’re seeing the effects of their disability, which is sometimes hard to watch and adds an obvious layer of challenge to their lives. We’re also seeing the people behind the disability as they succeed, fail, change their mind, worry that they’ll never meet “the one” or continue to love their childhood sweetheart. By showing their difference, the programme has also shown their normality. And then we have the joy of The Undateables, also on Channel 4. I refused to watch this at first as I thought  it was going to be an appalling exploitation of people with support needs. How wrong I was. It’s a huge celebration of difference and, sometimes, if we’re lucky, brilliant quirkiness.

Again, it acknowledges that people have a range of support needs but it really focuses on what they want from life. Dates sometimes do not develop into something else because the people don’t like the same kind of music or one isn’t outgoing enough. Sometimes they do, because they fancy each other like mad.

The stars of the show experience nerves, disappointment, heartbreak and elation. It’s an excellent demonstration that people who don’t fit the norm are still entitled to normal lives. It reminds me why I do what I do and why I challenge the risk adverse. I’ve said it before – if we don’t allow people to be sad, how will they know when they’re happy?

Suzanne Gale works with commissioners and providers to achieve equal opportunities and high standards of provision

 

First history to cross the continents

Community Living 

Community Living

— Summer 2020


Clare Palmer is impressed by a study which charts the twentieth-century history of learning disability in twelve countries across the world

Intellectual Disability in the Twentieth Century: Transnational perspectives on people, Policy and Practice.

Author:


Jan Walmsley & Simon Jarrett

Publisher:


Policy Press, 2019, 216 pp.

Price:


Paperback £26.99
e-book £26.99

ISBN:


——–


Jan Walmsley and Simon Jarrett (editor of Community Living Magazine) have jointly edited this book. It is a remarkable achievement. As they say in their introduction: “We believe it is the first of its kind to take a historical view of policy and practice in intellectual disability across continents, and we are certain it is unique in its emphasis on the impact on individuals.”

There are chapters about twelve countries: Australia, Austria, Czechoslovakia/Czech Republic, Ghana, Greece, Hong Kong, Hungary, Iceland, New Zealand, Taiwan, United Kingdom, United States. They asked all their contributors to tell their national stories up to the end of the twentieth century, to cover major change in policy during that time, and to include not just the impact on people with intellectual disabilities and their families but also one or more life stories, where possible with the voice of the person themselves.

Although they are all very different, there are some common themes. The stain of the “science” of eugenics, first advocated in 1863, was strong in the Anglosphere and much of Europe. In the book, the chapter about Austria illustrates how the nadir was reached by the Nazis. Sterilisation and extermination of the ‘unfit’ and the ‘unworthy’ was the most extreme example of the drive to manage and eliminate lives that were deemed to have no value. It was not till the latter part of the 20th century that sustained efforts started across the world to move away from institutionalisation and worse to valuing people and their lives.

The chapter about Ghana is an excellent example of the calibre of the contributions in this book. There had been no authoritative history till now. Indeed in Ghana, the condition barely had a name till the late twentieth century. The unrelenting negative view of intellectual disability has its roots in spiritual beliefs. For example “…those with Downs syndrome are labelled ‘nsuoba’ meaning spirit or water children in Twi….A child born with disabilities in a village would often be left to die in the bush or by the river. This was seen as allowing the child’s spirit to return to the spirit realm, so it could be reborn in a ‘proper’ body in the future.” The chapter tells us that regardless of which gods are worshipped disability is seen as a punishment and a reason to exclude people, especially those with intellectual disability, from community life. “The drive for change has been spearheaded by parents. Parent organisations….have been a mainstay of support and advocacy…(and) educating and supporting parents themselves.”

My one reservation is about the cover of the book. I suspect the publishers thought a headless woman holding a grey balloon would say something about the way intellectual disability is perceived, but this reader was just perplexed.

As a child growing up in the 1950’s, I remember the secrecy and whispering about a family living in the same road who had a ‘mentally handicapped’ child, who was sent to an institution. I understood then it was something that brought shame on the family, that it could only be seen as unfortunate. When in the 1980’s we discovered that my 15 month old daughter had a learning disability, I had to deal with my own prejudices as well as those I was to encounter from others. Reading about the experiences of many thousands of people who have suffered greatly has been distressing , but it has helped me understand the weight of those prejudices, as they are still around us; that they are universal, and as we know only too well there are many battles still to fight.

Publisher’s Blog – When will we learn from history?

Community Living 

Community Living

— Summer 2020

Do we ever learn from history?

This posting in the news https://www.laingbuissonnews.com/care-markets-content/news/people-stuck-in-modern-day-asylums-due-to-a-lack-of-community-care-settings/ seems to suggest the problem is lack of social care and housing in the community, whereas I’d suggest we’re actually seeing the results of stripping support out of the community services.

We’ve seen the funding grab both from individual support funded by the local authority and the community learning disability teams, originally funded by Government funding to resettle from the 80s onwards. In addition, we’ve seen the increasing disinvestment in local authority social care services in the community in favour of privatisation – which can trump costs by reducing the direct support staff costs and conditions and ensuring that they feed their investors. The reality has been that the cost reductions have been at the expense of social care staff salaries and conditions throughout, despite the expectation if very much increased skills. Most of Commissioning has supposedly expanded choice but in reality has reduced this as it focuses on what appears to be an increasingly cost-driven process supporting quality with paper records. It also adds its own costs into the costs of services to what effect for the people? People can write the right things but how does this get backed up by people’s actual experience in practice?

Authorities don’t invest in social work much beyond ‘assessment’; contracts seem to rely on paper-driven processes whilst CQC inspection supposedly without notice in fact does warn as they also look for a written report ahead of inspection as well as sending letter to staff and families. Families who have sought support too often seem to have then lost their family member to such as ATUs, not received preventive support. So family members have lost trust and the potential whistle blowers we know are not protected even though they are supposed to be. It has certainly not been the authorities processes which have discovered the real truth about what is happening inside the hidden services – we’ve relied on Panorama undercover exposees… The advantage if small community -based housing and support is that the neighbourhood will more likely see/hear and ask questions…. But are we in fact seeing the redevelopment of hidden institutional care?

Our relatively recent past

My history in the North West followed a very positive strategy in Hertfordshire in the late 70’s  where as the Manager of a new 3-unit hostel for adults with learning disabilities of 24 people with the range of need, I was allowed to cancel the cook and heated trolleys, remodel the central kitchen into an activities room and change the residential charges to leave food and clothing allowances with the residents to shop together and cater in their units. What they did in each unit was decided by their group in weekly meetings – no matter how disabled they were.

In the North West we saw a very positive regional strategy – the Model District Service – which engaged its local districts in developing a local community teams, then comprising health specialist staff with learning disability social workers. They identified local services who proposed ‘schemes’ that met their requirements – which were largely that they would pay an average ‘dowry’ per person agreed  as long as people were being resettled unto ‘ordinary housing’ in the community neighbourhoods. If people were resettled into residential care no NHS funding would be forthcoming. This was enabled by the Government frontloading funding solely for resettlement. At this time too, apart from existing hostels , the local authorities would only allow  registration of new residential care if  they housed no more than 6 people which would allow people to be more a part of their neighbourhood.

An example from the early 80s

Our ‘scheme’ at Integrate in Preston in the early 80’s was inspired by David Brandon, the magazine’s original editor and partnered with North British Housing who had funding to redevelop old terraced housing in Preston, so enabling local neighbourhoods to accommodate amongst its housing resettled people with learning disabilities in amongst other ordinary housing – in areas offering good access to local shops, and other facilities. Housing ranged from houses for 3 or 4 to flats for 1/2.  The original thinking had been based on a ‘core and cluster’ model where people would move into a ‘ core house’ to be ‘trained’ before moving on into other tenancies. The first groups moved into 2 flats adapted from a house before moving on – and we quickly learnt that this model was flawed as it meant people had to make 2 transitions and there was no reason why people couldn’t prepare for the transition by visits from hospital equipping the house before moving in. It would then be the staff who moved out/reduced, not the tenants.

How it was funded

We had block funding from the Health Authority released gradually along with our planned phasing of resettlement.  The people we resettled all came from Preston and had been stuck in hospitals for anything from 10 to 30+ years and included a range of need so we started with people we felt could develop skills despite these years of institutionalisation, later supporting people with more complex needs. This enabled us to manage the funding according to need and release some forward as after a while, for example, people managed overnight on-call with a predialled phone number to a near staff flat rather than in their house. Using the funding we also developed community projects with or in the community – furniture renovation, an allotment project, a craft club for the community nearby (which 2 people attended), adult education classes….

So why have we people now going back into institutions?

This article says ‘The average total length of stay in inpatient units is more than five-and-a-half years’; and now we hear that, far from just being concerned to get people back out,  ‘admissions remained at around 100 every month in 2019/20’..

With an apparent lack of a realistic strategic plan, apart from  failing to get people out, we seem to have a dearth front-loaded investment in the community in properly equipped agencies, let alone in specialist community preventive services.

At the same time we continue to see (and have seen for years) both the squeeze on LA spending and the reduction in the previous investment in community learning disability teams (from the resettlement money which hasn’t been safeguarded as it should have been) AND their increased load in supporting ordinary physical health in the general NHS following the LeDer revelations. So what we’re seeing with the continued admissions to hospitals is community funding presumably now being spent on institutions ie moving the money back, not only into institutions but with privatisation seeing the opportunity for large rewards…into investors pockets.

Many of these hospitalisations hence seem to be the result of a lack of pro-active community services, and so the result of a crisis response. Today, given people we assume being admitted in crisis due to challenges and community services which are developed with known individuals to suit their individual assessed needs, without a strategy which funds support to crisis in the person’s community and any interim community resource, inevitably the only resource ends up being containment in an institution. Once there getting out becomes more difficult as the person’s challenges are likely to escalate

What is needed?

We therefore know that appropriate resettlement services mean bespoke services today, as well as the reinvestment in community support to prevent admissions. We need services that will intervene to support families and others to manage emerging challenges in individuals living in the community and at unsettling times, like transitions from children’s service, education and other situations such as changes in family health/ageing.

There seems to have been no tracking of the consequences of the way services have changed to discover the reasons why people’s situations have broken down. In the article linked above, a plea for more social care and housing  seems to fail to recognise that the way services are being developed now is on a more personalised way. I don’t recognise a lack of expertise in social care, as we see it in the community support services that work well developing the lives of people who could well have otherwise ended up in an ATU.  We actually have vacancies in supported housing, but it needs a proper matching and process to appropriately use these properly, and there are housing agencies who will develop appropriate housing for identified people.  What we don’t have are pre-developed services waiting to be used unless these are other kinds of institutions masquerading as if community services.

What we might better need could be short-term supported housing with skilled staff, maybe attached to community teams which could be used to support a community crisis and prevent hospitalisation – either to help get through the crisis  by supporting someone back again with the right support, or working with them towards an appropriate community support service.

Are we seeing tomorrow’s new ‘community’ institutions in flat developments?

One local authority, which isn’t on their own, appears to be trying to solve this by encouraging the development of flat blocks…. which could mean an ‘easy’ answer to moving people out of hospital, so meeting a target?.

However, in a bid to manage shrinking budgets, such developments will reduce their costs on ‘shared’ support (as compared to 3/4 in a house); would mean theoretically that any vacancy can be more quickly reallocated and their plan would be to try to move people from high costs shared living to reduce voids and costs. This although they do not commission housing seemingly ignoring that fact that these are people’s homes with tenancy rights.

Apart from their tenancy rights, people can be too easily ‘persuaded’ to move without properly understanding the consequences (even if they understand they can decide in the face of the authority figures). The power imbalance is of major concern in this. As an example, if their current housing has been their home for some years then they would know their neighbourhood, neighbours, we would hope be comfortable with their co-tenant/s and know their locality – shops, transport etc – maybe even be near to family and friends. Moving may undermine other aspects of their lives therefore and should get full assistance to make their decision.

We also know that some LAs have (mistakenly in my view) agreed to pay for void rents in some houses after a period, when this is a housing cost built into the rent and so should not be part of the LA support costs. Unfortunately this is likely to skew where the LA wants people to live.

Again, had they tracked placements which fail, they might also know that placing someone in the wrong house without testing things out with co-tenants can end up disrupting what had been a settled household – and sadly not all agencies will resist taking someone when pressed. This makes advocacy very important but some local authority contracts have written in that they have to refer people; people can’t refer themselves even if they or their family know their rights to do so. They CAN and should ask the LA to refer them though – but may not know this/dare to challenge.

What might this kind of shared living mean and what could it at best mean?

Am I alone is seeing a strategy which puts people who have high support costs together, could mean agencies expected in reduce costs by having ‘shared’ costs managed by assistive technology and an on-call person? Given mistaken placements in shared housing where, for example, introducing someone whose challenges impede/intrude upon people’s settled home, this doesn’t lead one to have confidence in how such flats would be allocated. One assumes high cost people will include people at high risk due to the extent of their disabilities with others whose high risks may include exploitation/abuse of others….apart from people whose levels of anxiety or additional difficulties due to autism (such as from the notorious noise issues in flats), may divert the ‘shared service’ disproportionately. So are these developments potentially tomorrow’s scandals – and will we see these in the hands of private investors too as their new way to yield profits and manage to keep costs lower than institutions?

Flat developments for young people transitioning from college into community living where they may learn some skills whilst making friendships with people they may want to share with in the future could be really helpful. Another group might be for some older people though one would think they might be better accommodated in general flat developments for other older people in sheltered housing with some specialist support where needed.

Where does it leave us?

In the aftermath of austerity with severe cuts to local authority funding I would suggest having developed the increased use of these ATU’s, we should fear a similar problem following the need for Government to manage the spending in and after the Covid 19.  There’s not much evidence that they appreciate that they are paying over the odds for so-called specialist hospital care, when we all know hospitals don’t offer this at all.

The best results are in the community where people are developing their lives, either because they managed to avoid hospitalisation but manifested similar challenges, or have had proper bespoke support developed by some agencies which do this well and which have ensured getting to know the person and their needs and interests – and too often because some parents have refused to accept the continued incarceration of their family member and fought for them.

There continues to be a scandalous lack of joined up planning between LA and NHS which means the LA has an unintended/even unconscious ill-informed motivation not to invest in high cost individual packages needed in the community, whilst the NHS is paying unbelievable sums to incarcerate people for years into inappropriate institutional care which we know makes people’s problems worse.

There is NO cure for learning disability and autism; sectioning under the MHA continues to make this possible despite this – and puts people into ‘care’ which we know is often delivered institutionally. We need people whose challenges have placed them under the MHA to be removed from it unless they actually qualify due to a mental illness which is curable. We also need the reinvestment in community services to ensure specialist support to families and others in the community able to intervene earlier; investment up front in local agencies who already have shown they can support people who challenge effectively in a bespoke way in the community; the inclusion in the investment in housing development by the Government of people who need supported housing as well as social housing. I wonder too whether the Government should also have learnt from Supporting People –  one funding source that did work well until its funding was just absorbed into the local authority funds and lost.

Does anyone ever learn from what works and also track what doesn’t work? It might benefit all concerned to do so, and I’m sure would have proved not only cost-effective but also of benefit to individuals and prevented the damage that we know has occurred when people have been placed away in these hospital institutions. Continued cut-backs to save money seem inevitably to cost more in services which damage people, increase their difficulties whilst the people who benefit appear to be private investors.

If we added up the costs could we reinvest in preventive services, social workers able to work with families and knowing the people, and a more person-centred tracking of just what services are doing, rather than in paper-driven ‘quality’ assurance when we know better? Surely a front-loaded funding from government invested in this way (like all those years ago) would save both lives and their contributions, AND resources – and we know what works and what doesn’t!

 

 

 

 

 

More stories about:

The story of our talented cartoonist

Robin Meader 

Robin Meader

— Spring 2020

This is the story of community Living’s cartoonist Robin Meader – in his words and drawings.

This is the story of community Living’s cartoonist Robin Meader – in his words and drawings. It’s wonderful. Do enjoy! He reminds us that with support people’s talents can grow and influence the world.

We’re fortunate he finds an illustration each time for our magazine:

More stories about:

Spring 2020 Issue – see what it contains

Community Living 

Community Living

— Spring 2020

NOW POSTED ON OUR WEBSITE – Our Spring Issue articles 
Some articles are left open to encourage non-subscribers to know what they are missing!

Simon-JarrettCommunity Living Editor Simon Jarrett previews the latest issue of the magazine. Sean Kelly’s interview with Liz Tilly: – from a special school teacher to starting Options for Life and then developing Building Bridges. – one of those amazing individuals – whether professionals or some family carers who make things happen

Clare Palmer and Virginia Bovell ‘How inclusive is the learning disability community? ‘ ask whether self-advocates could do more to include people with profound and multiple learning disabilities and be more realistic about what they can achieve?

Sally Warren and Jo Giles – Act together to uphold human rights about using a practical guide to the Reach standards for supported living helping ensure human rights, when defending them seems increasingly urgent as supported living perhaps is at risk of becoming a one-size-fits-all model. Simon Jarrett’s ‘The trouble with rights in reality’ considers people’s rights (which may be relevant in the current situation)

Simon Duffy in ‘The Language of rights’ suggests human rights discussion is not enough but ‘restoring the place of the genuinely local neighbourhood community will be essential’. (Maybe in this difficult period due to the impact of the Corona Virus, there may be a chance for neighbourhoods to re-discover who’s in them as we see neighbours and local charities looking to who need help and who can help).

If you’ve enjoyed our articles why not subscribe – if you pay by credit/debit cards via paypal on line this will open all our articles immediately here

Other subscriber articles:

Letters from readers: 

our regular welfare rights article on universal credits ;

our social care law article on using the Ombudsman – closed during the Covid but VERY relevant going forward once they are back;

Sara Pickard’s ‘Ten years bearing a torch’ tells how she has championed inclusion;

‘Meet the leaders‘ on Dimensions Learning Disability and Autism Leaders List, are all Campaigners, creatives and entrepreneurs, who make society better for all;

Self-employment route to work by 2 self-advocates;

Celebrating the ‘Strawberry Fields’ project in Liverpool with the gates of Strawberry Field open again helping people find work;

Research: self-building a life and a community- looks at how people can have more of a say;

Diary: the rapid, wrong conclusions – Simon Jarrett’s opinion piece points out that the horrific case of a man who threw a small child from the balcony means just like other people there can be mental illness or other reasons for such behaviour, – and tells us about ‘John’s Crazy Socks’;

Innovation in Hard Times – Jo Adshead’s report on the big topics at the social care and health commissioners’ conference in Derbyshire;

Hannah McCreesh on people’s access anxiety –make showtime for everyone  with an app allowing people to find out how disability friendly a venue is and post their own reviews;

Film: rolling out the red carpet for all: Tracey Harding considers the neglected disability angle of the debate about the lack of diversity at TV and film awards ceremonies;

Book reviews:  No 2 problems A dog’s story helps with poo problems; using responsive communication with sensory signals;

History: when mass murder was social policy Nazi eugenics were based on ‘improvement through exclusion’, with no place for disabled people….

 

 

Make it showtime for everyone

Community Living 

Community Living

— Spring 2020

People often avoid going out because they fear venues may not cater to their needs. Now, they can use an app to find out how disability friendly a venue is and post their own reviews. Hannah McCreesh talks to the team who want to get rid of access anxiety.

It is not only sad but also an incredible injustice that, in 2020, leaving the house can still be a source of fear and anxiety for people with learning disabilities and autism. Places not being accessible is the primary reason for this. Countless venues describe themselves as being disability friendly yet, upon arrival, you find out that they have completely mis-sold themselves.  Just like that, an enjoyable day or sometimes even holidays are tainted by feelings of stress and anxiety.Unfortunately, accessibility for disabled people is often just a tick-box exercise for venue owners. Without proper feedback from people with learning and physical disabilities, venues will continue to come up short when it comes to providing a space where disabled people can feel relaxed and are catered for.It is a catch 22 situation. Without people with disabilities giving venues both positive and negative feedback, they will continue to do the bare minimum they can do to get by or remain unaware of access issues.

“Without people giving venues positive and negative feedback, they will continue to do the bare minimum”

If this is to change, people with learning disabilities and their families, friends and carers need to be active and speak up to challenge venues that are simply not accessible enough. That is the only way accessibility will become a priority for these businesses. It can be difficult to know where to start, but three disabled entrepreneurs think they have the answer. Discouraged by their collective experiences of poor venue accessibility, Mark Esho, Richard Copson and Jignesh Vaidya have brought out an accessibility app called Access Rating. The founders were fed up with spending time researching venues before visiting only to find that, upon arrival, the disabled toilet was being used as a cloakroom or other shocking situations.

 

First app made by users

While some disability accessibility apps are already out there, none are user led. As Access Rating is made by and for people with disabilities, its founders hope it will make a difference to the lives of people with physical disabilities, learning disabilities and autism. In 30 seconds, users are able to search through more than 100,000 venues and restaurants throughout the UK to find a venue and submit their disability access review. Users can rate each venue from 1 (poor) to 5 (good). They can comment on physical issues, such as accessible toilets, and a free comment section allows people to criticise or praise aspects of venues and tip off other visitors about them. For people with learning disabilities and autism, this could be a valuable opportunity to say whether a venue has flashing lights or lots of noise – anything that could cause a meltdown or sensory overload. Visitors could also include information about sensory rooms or places where people can go to calm down should they be feeling anxious or
overwhelmed. The app is not intended to be used only by people with disabilities – it gives carers, friends and families a valuable opportunity become access champions and submit reviews and share their experiences of disability access at different venues.

 

Access audits

Venues that receive consistently poor ratings and feedback can contact Access Rating for help to improve the experience for disabled and non-disabled visitors. The team combine their knowledge of disabled access regulations with personal experience to make getting around easier. As part of their services, they offer access audits and a disability access consultancy for people managing venues and other buildings used by the public. Venue owners and managers can ensure their building complies with disabled access regulations and meets best practice standards. Esho says: “As a disabled person, I have grown used to visiting venues and being let down by their accessibility. I am tired of having days out and plans ruined by their simple inability to adhere to proper accessibility standards. “By developing Access Rating, we hope to eliminate ‘access anxiety’ for people with physical and learning disabilities – that’s the anxiety faced at the thought of leaving the house and running into troubles caused by accessibility. “No disabled person should have to deal with that. Together, I believe, we can make a real, tangible difference to the lives of the everyone living with a disability in the UK.”

Innovation in hard times

Community Living 

Community Living

— Spring 2020

Transferring public property to the community and frustrations around the Autism Strategy were big topics at the social care and health commissioners’ conference. Jo Adshead reports

Against the backdrop of a pending general election, the most uncertain of Brexits and biblical
flooding in the Midlands, commissioners who may have felt they had seen it all were not deterred. Around 230 delegates at the National Commissioning and Contracting Training Conference in Alfreton in Derbyshire discussed how they had sought ever more creative solutions to providing for the most vulnerable in our communities. At the annual event, held over two days in November, they could share, network and showcase their knowledge and innovation.

Community ownership

Keith Cunliffe, cabinet member for adult social care at Wigan Council in Lancashire, had the audiences captivated in both a panel presentation and a workshop. As a local politician, it was his first time at the conference but he wasted no time in airing his view that, in the toughest of times, the need to save money had brought an opportunity for innovation and the direct consequence of being given flexibility, freedom and the opportunity to innovate had mobilised the community. Wigan, Cunliffe states, was the third worst-hit local authority by austerity. Community asset transfers – where ownership of public land and buildings from public bodies is passed to community organisations for less than market value to achieve a social benefit – took place in the most deprived of areas where people were most socially isolated.   Sunshine House Community Centre in Scholes was adapted to enable a man with a physical disability to run a floristry course and coffee mornings, thereby managing his isolation by enabling himto share his strengths with others. Allotment projects were transformed into dementia day care and provided meaningful occupation for learning disabled adults, with only £25,000 of funding to build a cabin. Wigan’s next challenge was to scale up the operation to cover the whole of the borough. Cunliffe, whose background is in mental health, described the major process of assets-based transformation, the assets being those of the people within the community. He persuaded those in power to embrace widespread cultural change and abandon ingrained ways of working. Key to this was building a new relationship with the public and working more closely with the NHS and the voluntary sector. It was evident that substantial savings and improvements had been made while involving patients, service users and communities as active partners rather than passive recipients of services.

 

Autism strategy: progress and priorities Trevor Wright was asked to take over as the statutory Autism Act lead for his local authority in 2013 and, as a result, discovered that he himself was on the autistic spectrum.

“The record on progress in improving autism services was ‘pretty damning’”

He is now the co-chair of the Department of Health and Social Care autism executive board and headed a Friday afternoon workshop to explore the progress made over the 10 years since the Autism Act came into force. He is well placed, with his own diagnosis in his late 50s explaining his lifelong feelings of difference and the experience of his daughter’s autism, to understand the effectiveness of the act. Since the act came in, the executive board has gone through six ministers and the autism self-assessment framework has been the only mechanism for checking if the act has been effective. More positively, Wright reported, autism is the only life-long condition with a statutory strategy. Frustratingly, the December general election delayed the publication of the revised strategy. Purdah aside, he was able to share some elements of the 2019 review. This is set to include children, develop clinical guidance for diagnostic services and improve the transition from children’s to adult services. The overall aim is to improve the understanding of autism and all its profiles. Access to justice and mental health care are also priorities. A shocking 75% of autistic adults have reached out for mental health services, which are severely lacking. Wright described the record on progress in improving autism services in the past 10 years as “pretty damning”. Although he acknowledged there were pockets of good practice, difficulties remained regarding the diagnosis of older people, black and minority ethnic groups, and women and girls. There are often no pre-diagnosis interventions and a lack of support for people who have other conditions too, such as obsessive compulsive  disorder and attention deficit hyperactivity disorder. He called for the creation of an autism inclusive society. He said positive behaviour management needed to be understood from the perspective of the individual understanding their own behaviours and triggers, not focusing on restraint. More support for highfunctioning people and for parents and siblings was needed, he added, as well as   a workforce with the required level of knowledge and skills. Other presentations from the day can be found at: www.ncctc.co.uk/presentations/navigate/567/412

Jo Adshead is the chief executive of Linkability: www.linkability.org.uk

Simon Jarrett: Diary: the rapid, wrong conclusions

Simon Jarrett 

Simon Jarrett

— Spring 2020

The knee-jerk reaction to the horrific case of a man who threw a small child from the balcony of a gallery is not the right one, says Simon Jarrett

The terrible case of Jonty Bravery – the teenager with autism who threw a six-year-old child from the 10th-floor balcony of Tate Modern gallery – is almost beyond words. The child has shown some signs of recovery, but his injuries are appalling. Bravery lived in a flat in west London and received two-to-one carer support. Our primary concerns must be the boy and his family, and the prevention of similar events. But already critics are circling to criticise the idea of community care. Times columnist and BBC presenter Libby Purves attacks the “kind and reasonable” idea that people with learning disabilities take control of their own lives, questions
“community care in geographically diffuse flats” and calls for “well-run, humane residential institutions”. This sounds like a disturbing, tragic case being used to call for collective punishment. Like anyone, if people with learning disabilities are seriously ill or dangerous to themselves or others, they need to be under appropriate institutional or medical supervision. Otherwise, they do not.

 

Fighting quacks

The Professional Standards Authority for Health and Social Care (PSA) has told the Society of Homeopaths to stop its members advertising sham therapies that promise to treat autism. Hooray. The latest quack therapy to catch the attention of the PSA is “complete elimination of autistic spectrum expression” (Cease), which involves extremely high doses of vitamin C and dietary restrictions. Such approaches prey on fears and distress, offering false hope and mythical “cures”. They also rely on a view of people with disabilities as not good enough – as a tragedy in need of cure.

 

The joy of socks

John Cronin is a 24-year-old New York entrepreneur who runs John’s Crazy Socks, which designs and sells extremely colourful socks over the internet. He has Down syndrome. A short film called Sock Guys, directed by Katie Turinski, has been shown in the US, and will hopefully come to the UK or go online soon. You can see a trailer at https://tinyurl.com/vyp6w8n and find the company on Facebook. If the best present you can think of for the woman, man, girl or boy in your life is a pair of socks, then the least you can do is get them a pair of John’s Crazy Socks.

Self-building a life and a community

Community Living 

Community Living

— Spring 2020

If people are to construct their lives successfully, advocacy, friendship groups and pursuing interests are critical, writes Andrew Power. Research offers the key building blocks for commissioners and support organisations to create the right conditions for this

When we hear the words “self-build”, we tend to think about programmes such as Grand Designs and The Restoration Man. Self-build is an approach to building a home where people take on more control and have more of a say over the design, build and furnishing of their homes. The popularity of these programmes suggests this is an aspiration many people share. What would it look like and feel like if we applied the same principles of having a say, making our own choices and taking control to our daily lives? For many people with learning disabilities, this sadly continues to be a far distant reality because of many obstacles, including low aspirations. When people are not given enough support, they can be left isolated or without access to activities of their choosing. By self-build, we do not mean people should do it all by themselves. Instead, we mean people having more of a say in building their local networks, activities and identities, which can be with the help of family, friends, advocates and support organisations. Personalisation has gone some way to making this a reality for some people with learning disabilities over the past decade. There has been a decline in the use and availability of council-run day services and a greater recognition of the need for more community-led initiatives. Against this backdrop, social care budgets have been shrinking and eligibility criteria tightening. Understanding how people can be enabled to self-build their own networks of support and learn to live in their communities within this context is a key for commissioners, organisations and families. Researchers Andrew Power and Melanie Nind at the University of Southampton and Ed Hall from the University of Dundee, supported by the Economic and Social Research Council, developed a research project to look at this issue. People with learning disabilities were involved in the co-production of the research design and easy-read research findings.

 

Findings

We found three key stages of self-building a life in the community. To begin with, as with any self-build project, the essentials must be planned. Finding out information and staying up to date are central to this. We saw that making this happen can be tricky without first enabling people to build up their confidence and skills to get their voice heard. Self-advocacy groups were key to giving people the confidence and the abilities to express themselves, make decisions and take part in discussions about their lives.

“From having that new kind of safety net of a group of friends, they become more confident and then, ultimately, they become more independent in their own lives.” Andrew, Good Neighbours (a voluntary organisation in Hampshire)

Unfortunately, the advocacy organisations we spoke to were struggling to maintain their self-advocacy groups. Second, a person needs to manage day-to-day responsibilities as they become more independent at home and out in the community. This involves acquiring and putting into practice a range of life skills and ensuring they stay safe, for example while learning to travel by bus independently. Again, self-advocacy groups were crucial in giving people the confidence to do this. Malcolm, who regularly attended one, showed a strong awareness of these issues.

“If I’m walking back through the park, I sort of keep my distance from groups.” Malcolm

Finally, self-building a life is only worthwhile if it enables people to find meaningful things to do, such as spending time with friends and getting involved in the community. Some people we spoke to had few opportunities to meet up with friends, especially in the evenings or at weekends because they lacked the support or experience to do so. In some areas, we found that learning disability friendship groups and dating clubs offer a lifeline for people to take part in joint activities in community settings. They talked about being less shy, more outgoing, more communicative and generally more confident.

“The Friendship Meet Up’s members meet up on their own on Saturday nights. We go to a local bar about once a month. Last Saturday, there were about six, seven of us… we arranged it.” David

 

Hopes and fears

Our hope is that more people with learning disabilities can self-build a life and benefit from the move towards personalisation. This can only happen if the right support is in place. At the moment, that support is patchy. Our research offers the key building blocks for commissioners and support organisations to create the conditions to enable more people to self-build their lives. Our fear is that, as advocacy organisations tell us, the most vulnerable are being left behind in this new social care landscape and that is exacerbating social inequalities. Commissioners can mobilise innovative choice and support only if they have the capacity and teeth to do so.

Andrew Power is associate professor in geography at the University of Southampton

Further reading
Power A, Bartlett R (2018) Self-building safe havens in a post-service landscape: how adults with learning disabilities are reclaiming the welcoming communities agenda. Society & Cultural Geography; 19(3): 333-356

 

Something is real – the gates of Strawberry Field are open again

Community Living 

Community Living

— Spring 2020

 

 

  A place commemorated in a Beatles song lives again as a visitor attraction and helps people with learning disabilities find work. Peter Rainford heads off to Liverpool

Beatles fans used to have to stand outside the red gates of Liverpool’s Strawberry Field. Now they can enter the grounds and gardens that inspired John Lennon to write the 1967 classic hit, Strawberry Fields Forever. The song title refers to a children’s home for girls run by the Salvation Army called Strawberry Field. Lennon lived nearby when he was growing up in Liverpool. The home closed in 2005. The Salvation Army, which has owned the site since 1934, decided to use the famous site in a new way and open its gates – which had not been on site since 2010 – to the public. There is a visitor exhibition, a cafe and a shop, and a space for spiritual reflection. Tours of the garden where Lennon used to play are offered. All money raised from tourism to the site goes towards Strawberry Field and the Steps to Work programme, which supports young adults aged 18-25 with learning difficulties or other barriers to  employment through a training hub at the venue.

 

A way into work

Nationally, only 6%-7% of working-age adults with learning disabilities are in paid employment, although many more would like to be and, with the right support, could be. Alan Triggs, the Salvation Army’s Steps to Work programme manager, says: “Seeing our trainees grow and develop in terms of confidence, belief and selfesteem is truly amazing. As the first group start to enter the world of work and gain more independence, the spirit of Steps to Work is truly realised.” Most significantly, after completing the programme, three trainees have already been offered jobs. While training, Chris Higginson, 22, worked in three theatres in the Hope Street area of Liverpool – the Unity, the Hope Street Theatre and the Everyman. He has now been offered a job as an usher and general theatre assistant at the Everyman. “The Steps to Work programme is brilliant,” he says. “I’m a lot happier and more confident in myself now, and that is all thanks to the programme and the support the work coaches have given me. “I’m so happy that I’ve got a job, especially working at the Everyman Theatre because I like drama that much. I’m really made up. I’ve wanted to get a job for years.” The other two trainees have secured jobs at Liverpool FC and a local solicitor’s office. Thanks to a partnership with the City of Liverpool College and investment by local businesses and other organisations, Steps to Work offers a 12-18 month programme that combines education and work placements to ensure trainees are truly work ready. Trainees attend a work readiness course to provide them with the tools they need to gain independence, discover their potential and learn skills that will help them in the world of work. After this, they are encouraged to experience three separate work placements with support from their dedicated work coach. The programme has deliberately not sought out placements in advance with employers but, instead, tries to match the dreams and ideas of each trainee w

Strawberry Fields visitor Centre and Exhibition.

ith work experience that meets their aspirations. Julia Baird, John Lennon’s sister and honorary president of the Strawberry Field project, says: “I’ve been really impressed by the Salvation Army’s vision and now there is huge potential to make a real change in the lives of young people who will grow in the precious soil of Strawberry Field.” Salvation Army territorial commander, Commissioner Anthony Cotterill, says: “John Lennon found sanctuary here as a child and that’s exactly what we want to offer by opening the Strawberry Field gates for good. “We know thousands of Beatles fans already visit the site and we saw an opportunity to channel that interest into a responsible tourist attraction. “The Salvation Army ran a children’s home at Strawberry Field from 1936 until 2005, helping some of Liverpool’s most vulnerable children. Today, we are using Strawberry Field to give Liverpool’s young people a step onto the employment ladder. “I like to think that John Lennon would be pleased that his special association with Strawberry Field is being used in this way.” After 15 months on the Steps to Work programme at Strawberry Field, the first group graduated in January 2020. The graduation ceremony was led by the Steps to Work team and mission director Major Kathy Versfeld. Each graduate received a certificate from Baird, and more than 50 guests could find out how each trainee has been transformed by the programme.

 

What to see

In 2019, the red gates opened to the public for the first time; the centre is open every day. Attractions include a virtual Mellotron, where visitors can recreate the opening of Strawberry Fields Forever, and an interactive display – Strawberry Fields Nothing is Real – where visitors can explore stories with help from characters including Elvis Presley, as well as Lennon’s school friend Mike Hill. People can find out about life in the children’s home and about Salvation Army band, the Joystrings, who reached number 32 in the UK charts. The Imagine More Cafe serves locally sourced food. It has a ‘talking table’, where visitors can chat to a team member, providing a place to socialise. There is also meeting space for community charities. Toilets are fully accessible, meeting Changing Places standards. Visitors can also buy a coffee for someone in need to have later, as well as Strawberry Field memorabilia and items from local suppliers in the shop.
●●www.strawberryfieldliverpool.com/

Peter Rainford is a volunteer for the Steps to Work programme

 

Meet the leaders who make society better for all

Community Living 

Community Living

— Spring 2020

Campaigners, creatives and entrepreneurs all made the Dimensions Learning Disability and Autism Leaders List, writes Duncan Bell

Rising athletes and successful dancers, political campaigners and passionate self-advocates, published authors, experts by experience and dating agency managers – all can be found on the 2019 Dimensions Learning Disability and Autism Leaders’ List. These are individuals with mild, moderate, profound and multiple learning disabilities or those whose autism manifests in many ways. They have a wide variety of health needs. And all of them have had to work harder than others to get where they are. Although society has come a long way, it still is not shaped with disability in mind. The Leaders’ List celebrates their achievements in advocacy, sports, work and education, arts and entertainment, nationally and locally. More than 400 people were nominated for the 42 places on the list. Winners were selected by a panel of expert judges, two thirds of whom have a learning disability or are autistic themselves. One winner from each of the four categories is profiled here.

David Gill: work and education The learning disability and autism adviser for the children and young people’s team at NHS England, David Gill is passionate about sharing his story of succeeding with autism to inspire others. He wants to make sure every child and young person with a learning disability or autism enjoys the same opportunities that he has. “It really matters to me to make a difference to the lives of others,” he says. He made the A Future with Autism (https://tinyurl.com/sxhxleu) video for the NHS Patient Voices website about his journey growing up with autism. Featuring his own artwork, illustrations and narration, it inspires young autistic people to know that they can have a future in work. It also inspires employers to see people with autism in a positive light and to take the plunge and hire them. However, when Gill was young, his parents were told he did not really have a future and he struggled at mainstream school. He turned a corner when he attended a school for autistic children then a learning disability and autism residential college. At college, he gained qualifications and learned to live independently. His job helped him redefine how he is perceived and taught him to start believing in himself. This led to volunteering at the Speakup Self Advocacy charity, of which he became a trustee before gaining full-time paid employment at NHS England in 2015. Gill still lives and works with the challenges of being autistic. Crowded places, large meetings, teleconferences, travelling, staying away from home and meeting new people are difficulties he faces with courage and determination at work every day. Sarah Jackson, autism clinical lead at NHS England, says: “We support David with as much practical stuff as we can to help make this easier, but it’s David who rises to the occasion every time – he is now a confident and a brilliant public speaker.” Steel Squid Collective: sports, arts and entertainment “My daughter came home yesterday and all she could talk about was the Steel Squid Collective’s visit to her college. She said she loves it and now wants to join the group as a dancer,” said a Leader’s List judge. “I think you might have an emerging fan!” The Steel Squid Collective is a group of musicians from Burley who all have learning disabilities and associated difficulties. Their music has one purpose: to help young adults transitioning from full-time education into adult services. For young people with learning disabilities, moving from full-time education, where they have structure, routine and purpose, into adult support services can be a daunting prospect. The Steel Squid Collective are here to help. Their debut EP and supporting tour will help show teens across the country that they are not alone and inspire them to think about their own dreams. They have overcome hurdles to be where they are; at times, all have been frustrated or felt like giving up. The collective members illustrate just how people with learning disabilities can achieve amazing things, with dedication and hard work. They show people that the right, person-centred approach to support can change lives. Such serious issues sometimes need a light-hearted approach. At such a scary time, some humour can help make a situation seem less intimidating. Who knew that one of their songs – Cider with my Greggs – could have such a positive message?

Jessie Carter-Kay: local communities Jessie Carter-Kay is the driving force behind Pulp Friction, a social enterprise that supports people with learning disabilities and/or autism. Carter-Kay has learning disabilities and autism. She wants to help people and make new friends but, sometimes, her speech can be difficult to understand. As a result, she has been patronised, infantilised and ignored. She will not accept discrimination, against herself or others. This is why she worked with her mum, Jill, to set up the Pulp Friction smoothie bar project. Pulp Friction is a social enterprise that helps people with learning disabilities and/or autism to be more independent and develop their work and social skills. It runs a range of hospitality and catering activities, including pedalpowered smoothie bikes, an ice-cream tricycle, a cafe and two canteens. What started as a hobby has grown into a business that employs 13 people. As an ambassador for Pulp Friction, Carter-Kay volunteers in all aspects of it. She uses the profits from the catering side of the business to fund social and leisure activities, including an inclusive choir and a dance group led by people with disabilities. Carter-Kay spends most weekends volunteering at community events. She raises the profile of those with disabilities and autism by changing the perceptions of individuals, groups and organisations. Although Carter-Kay can be quiet and timid, she has a strong sense of right and wrong and always wants to challenge what she sees as social injustice. She works hard to make sure all people are treated equally. “I have always appreciated Jessie as my daughter. But, when I step back and look at what she does, how she does it and what others say about her, I can really see the difference she is making,” says Jill. “I’ve had parents and young people who are struggling with a range of additional needs tell me that Jessie gives them hope for the future.”

Francesca Dunn and Samir El-Ziftawy: advocacy, policy and the media category

People with severe disabilities cannot use regular accessible toilets and need somewhere to be changed when they go to the toilet. Without a public place to change, they simply cannot stay out for long. Samir El-Ziftawy and Francesca Dunn feel this is really unfair. Having profound and multiple learning disabilities, they cannot use words so communicate in other ways. For example, Dunn blinks once to say “yes” and stares to say “no”. El-Ziftawy shows that he agrees by smiling widely and making a “happy” sound. Both have a great sense of humour and living a life Campaign 4 Change laugh at funny jokes. They talk to each other and people around them through eye contact and facial expressions. El-Ziftawy is the centre of attention with his radiant personality, and Dunn knows exactly what she wants and she gets it. “Samir and Francesca work together as a team… they come as a duo and support each other… I am extremely proud of their achievements over this past year,” says Katie Reid, healthcare facilitator at disability support organisation Achieve Together. Through self-advocacy group Campaign 4 Change, El-Ziftawy and Dunn encourage those managing places such as shopping centres, cinemas, restaurants and parks to install Changing Places toilets to make going out and staying out possible for people with severe disabilities. They also raise awareness of their campaign by meeting the public on Changing Places Awareness Day, sporting Changing Places T-shirts and signs, and through photoshoots. Their achievements prove that people with profound and multiple learning disabilities can make their own choices, be involved and be dedicated to a cause. They demonstrate that having very severe disabilities does not stop one making a real difference and having a meaningful life and goals.

Read all the winners’ stories at https://www.dimensions-uk.org/leaderslist2019

A self-employed route to work

Community Living 

Community Living

— Spring 2020

Two self-advocates in Wales got fed up of being excluded from the world of work. They decided self-employment was the way forward and set up Barod, which means ‘ready’ in Welsh. Bryan Collis reports

Imagine saying to 100 pupils: “When you leave school, only five or six of you will have a job in any given year until you are 65.” Well, we doubt you can. This is the case in special schools in England. In 2018-19, just under 8,000 adults with learning disabilities who receive long-term support from social services were in paid employment (NHS Digital, 2019). This includes any paid work or self-employment of one hour per week or more. There are no numbers for Scotland, Wales or Northern Ireland. In the absence of real work, many people instead start to call day services and day opportunities “work”. Family carers may just want or need the support that school previously provided (unpaid  care for five days a week during term time) to continue. People with learning disabilities who try to work are often put off by other people. Other people say, “You will lose your benefits”, “You won’t manage a full-time job” or just “It’s not for you”. And, if you try to access mainstream business support, you can be put off by your disability adviser at the job centre. That happened to one of the people who was planning to co-found our organisation, Barod. People tasked with supporting new businesses often do not know how to provide support that is accessible to people with different learning needs.

Ready to run a business

Seven years ago, Barod was set up by two self-advocates and two allies to make money and create inclusive employment. The self-advocates were fed up of being told they were not ready and needed to go on yet another course or work placement.

“There is a history of schemes that say they are about work but do not provide or lead to real work for real money”

We chose the name Barod, the Welsh word for “ready” as a way of saying we were ready to work and ready to run a business. Today, we have 12 employees, of whom eight have a learning disability. No one works full time and we are all paid the same hourly wage. We rely on doing business successfully, not on grants. We make information accessible, train people and do social research and evaluation. Sometimes, we feel we belong in the business world; sometimes, people make us feel that we do not belong. We started a two-year research project called The Bridge to see if other selfadvocates could become self-employed or start their own businesses and social enterprises from within self-advocacy organisations. It was funded by Drill (Disability Research on Independent Living and Learning), through the National Lottery Community Fund. We wanted to see if our story would be true of others, whether they were starting their own businesses or trying to make money for their organisation. We worked with Social Firms Wales, My Life My Choice, People First Dorset and Carmarthenshire People First to do the research. We worked co-productively with mixed teams of people with and without learning disabilities all the time.

Research themes

We found five main themes.

The leap of faith

You can do all the preparation and research you like, but there comes a time when you have to jump.

●●If you are not used to taking risks, you probably will not jump.
●●If you are told you are no good, you probably will not jump.
●●If you think you will lose your benefits and will not be able to get them back if it goes wrong, you probably will not jump.
●●Some people did jump.

Invisible support

Where people thrived, learned lots and became more confident, they had invisible support.
●●This is the encouragement a friend gives.
●●It is a colleague who checks an email without making a fuss.
●●It is a buddy who has your back so you can concentrate on the hard bit of the job you are doing right now.
●●It is the place you can drop in when you are passing to check if you have got your business cards right.Some organisations have a culture that gives invisible support. Most business support is visible, has to be booked in advance, is time limited and not flexible.

Personal journey

People all have different journeys into business. The road can be very winding and have some crossroads where you have difficult decisions to make. Sometimes, you have to make a U-turn. You might start working a few hours a week to test the water, see if you can cope, see if you like it, see if others like you. Sometimes, you have to take a rest for a year or more. As you travel, the way you see yourself will change. You might start calling yourself staff or a worker or businessman or businesswoman. People with learning disabilities have complex lives, with carers, social workers, support workers, job coaches, advocates, friends and families. Not everyone will agree about what you should do next, but it is your life.

Organisational journey

When organisations try to make money, it can be a big change. Some people think you should still do things for free. Others will start to look at you with new eyes. They will want you to be professional, have high standards and respond to their wishes. Grant funding means getting money then deciding how to spend it and it feels safe for a year or two. Being in business means you have to get the money every month. If you do not get the money, then your job ends very quickly. Businesses have to make quick decisions. Charity trustees can take a long time to make decisions. Learning together as mixed teams of people with and without learning disabilities gives your organisation a good chance to be a success.

Belonging in the business world

When you start doing something new, you can feel like an outsider. This happens to everyone starting a business. To belong, you need to feel accepted and understand the rules that no one talks about. Most people get a friend who can help them learn about belonging in the business world. If you have a learning disability, this can be harder. People may dismiss you or pretend you aren’t there. People often make judgments quickly, based on what you look like or how you talk.

“Ten years in work placements and still not getting the national living wage is exploitation”

One way of helping yourself to belong is to “wear the right shoes”. People have work clothes and work behaviour. If you put on work clothes and behave like you are at work, people are more likely to treat you as if you belong. We have made a video and fact sheets for each of these themes, which will be made available at our website at www.businessforall.info.

Help for others

Our project developed an online glossary – a list of hard words and what they mean – for anyone who wants to understand what business advisers are talking about when they use words like “cashflow forecast”. We also developed “business blocks” – worksheets you can do before you start up in your own time and in any order. Once you have done them, you will have something to take to a business start-up adviser. These will be available online at www.businessforall.info.

Action research

We also found out about doing action research with mixed teams. Our teams worked together all the time, so did not have lots of review or planning meetings. We replaced these meetings with a catch-up phone call from the central team. Some actions took a long time, so we did not see as much progress as we had hoped in the 18 months of research. We made a video and fact sheet about this too. It is called Behind the Scenes and will be on the www.businessforall.info website. The self-advocates began to see themselves as business people or workers. Two have sold handmade cards online and at craft fairs. Two have developed their photography hobbies towards businesses. The self-advocacy bodies turned successful projects into business-like services and know how much they need to earn to cover costs, employ people and have a surplus. They have marketed services and seen new customers beyond the usual suspects a funded service would work with.
Barod: http://barod.org

Alan Armstrong, Mal Cansdale, Anne Collis and Lucy Hinksman contributed to this article

Ten years bearing a torch

Community Living 

Community Living

— Spring 2020

Sara Pickard has championed the cause of inclusion by speaking to parliaments and the United Nations, mingling with celebrities and acting on stage, all while holding down a job

As we move in to a new decade, now seems like a good time to reflect on the experiences and opportunities that have come my way during the last decade… and to look ahead. I was 26 back in 2010 and, at that time, I was working on my first full-time job with Mencap Cymru in Cardiff as the project officer for a citizenship project with schools and colleges throughout Wales called Partners in Politics. I have been lucky enough to have my voice heard in important places too, including the House of Commons, the European Parliament in Brussels and, perhaps the most exciting of all, at the United Nations’ headquarters in New York. More opportunities came for me during the past five years as the self-advocate council member for Europe for Inclusion International, which took me to many places around the world to meet other self-advocates. The past decade also saw me: elected as a community councillor for my area nine years ago, a role I still hold; carrying the Olympic Torch in Cardiff before the 2012 games; and, maybe most importantly of all, meeting my boyfriend Simon eight years ago. Last October, I felt very honoured to be nominated to attend the Women of the Year lunch and awards ceremony at the Royal Lancaster Hotel in London to celebrate my work and that of 400 other women from across the country. It was a fantastic experience and a day I will never forget. As soon as we arrived at the hotel, we spotted the red carpet and the paparazzi and almost immediately along came one of the judges – TV star Lorraine Kelly – who welcomed me. During the day, I had the opportunity to meet lots of the other guests, including Mel Giedroyc, Dame Tanni Grey-Thompson, Angela Rippon, Theresa May, Maureen Lipman, Zoë Wanamaker and Tamzin Outhwaite, who played my favourite character from Eastenders Mel Owen (until she got killed off). After a wonderful lunch, the awards ceremony revealed some very personal and moving stories from some truly inspirational women, which reduced us all to tears. Perhaps the most emotive story was that of the Bletchley Park ladies, who played such a big part in the war effort for our country and made a huge impact on the room when they took to the stage.

Confidence through inclusion

I have been at Mencap Cymru, the leading organisation supporting people with a learning disability in Wales, for 13 years and worked on a number of projects. I am currently the project officer on the Play Our Way project, funded by Children in Need, which brings young people, with and without a learning disability, together through inclusive sport and activities. The project helps young people increase their confidence, improve their teamwork and build meaningful friendships to help change attitudes towards learning disability for the next generation and break the stigma felt by some. I am also an elected member of Mencap’s Our Voices Council – a board made up of representatives from across the country who have a learning disability and meet monthly in London to help advise Mencap on its priorities and decisions. I have been at Mencap Cymru, the leading organisation supporting people with a learning disability in Wales, for 13 years and worked on a number of projects. I am currently the project officer on the Play Our Way project, funded by Children in Need, which brings young people, with and without a learning disability, together through inclusive sport and activities.
The project helps young people increase their confidence, improve their teamwork and build meaningful friendships to help change attitudes towards learning disability for the next generation and break the stigma felt by some. I am also an elected member of Mencap’s Our Voices Council – a board made up of representatives from across the country who have a learning disability and meet monthly in London to help advise Mencap on its priorities and decisions.

Using the ombudsman when councils break the Care Act

Belinda Schwehr 

Belinda Schwehr

— Spring 2020

The Local Government and Social Care Ombudsman can be an effective alternative remedy to the courts for Care Act breaches. It also offers certain advantages, says Belinda Schwehr in the first of a two-part series.

The Local Government and Social Care Ombudsman (LGSCO) investigates social care complaints. It is therefore a way of getting information out and facts clarified without being formally hostile. Before you approach the LGSCO, you have to air the problem with the council.

As long as you apply to the ombudsman early enough, legal proceedings can still be used within the subsequent few months if your complaint is not upheld. LGSCO reports provide lessons and ensure accountability, which rarely happen with a court case. However, these reports do not count as precedents so, just because the LGSCO is critical of a council for breaching the Care Act, the public cannot assume that any other local authority will automatically shape up. Some recent reports give a flavour of what a complaint to the LGSCO can achieve, particularly in relation to delays, cuts and direct payments.

Getting personal assistant costs back

Restitution being used as a principle of good administration is a recent legal development. Key to this is that the LGSCO can be seen as a form of “error of law” tribunal, even if not a genuine appeal tribunal. In a 2019 case concerning Bath and North East Somerset Council, the ombudsman said that, until a Care Act compliant asssessment had been completed, the council must continue to meet needs as previously agreed. A proposed cut could not simply be imposed. The person’s rights to services specified under the old care plan continue to subsist and form the basis of a private law right to reimbursement if someone has paid for their delivery. Over the whole period of this complaint, there had never even been a properly concluded care plan based on a reassessment once the person’s Independent Living Fund money had ended. The complainant’s primary concern was that the continued funding, although protected, was no longer enough to pay for the needs that had last been agreed in 2015. This was because the costs had gone up, leaving insufficient money to pay the personal assistants (PAs) everything they were already owed, which was about £7,000 in holiday pay. The LGSCO recommended backdating to the first time the client flagged up that the budget was inadequate and would not cover what she was having to pay the PAs for the originally agreed number of hours. It was not saying that she could claim to pay the PAs whatever she thought they deserved, but rather that when the council got around to finalising a proper care plan, the care plan needed to be backdated to compensate for the period where costs were found to be greater and needed to be paid. The PAs had stayed on without being given a pay rise. However, if there was evidence that the client had been under pressure regarding salary from a particular date, and should not have expected them to stay on unless they were paid more, that would have to be acknowledged and was grounds for backdating.

Lawful reassessment required

Also in 2019, the ombudsman ruled that Nottinghamshire County Council had failed to lawfully reassess the needs of a man with Asperger’s syndrome. The man’s care package had been stable for 12 years. Nottinghamshire suggested transfer to a cheaper provider without actually sourcing one with the requisite level of skill. It merely said, in short: “You have to make do on less, because that is what we want you to do.” This is not a defensible position within the legal framework. An officer had said the man would have to contribute the difference between the council’s set rate and the hourly rate set by the care provider, arguing that: “This applies to any person who chooses to use a different provider whose charges are above other agencies and whose charges are not in line with the county council agreed costs (core rate).” The parents had paid the difference personally.

“The ombudsman can be seen as a form of ‘error of law’ tribunal, even if not a genuine appeal tribunal”

Section 27 of the Care Act means a plan cannot be changed until a proportionate reassessment has been done and, although it does not necessarily have to be as deep as an original assessment under section 9, it is subject to all the same principles, including the duty to promote wellbeing. Changing a home care provider is not against the law, even if this is against the wishes of a client. Funding a package based on the cost of alternative provision is also not automatically against the law, but can only be done if providers have been found that are willing and able to provide the package in light of all relevant considerations, including the skill level required. The ombudsman stated: “It is not acceptable for a council to reduce support based on a supposed cheaper care provider that does not at present exist… The council’s approach appears to have been financially motivated and did not have sufficient regard to his specific needs.” The LGSCO recommended: a symbolic payment of £1,000 for stress and worry and loss of respite service; reimbursement to the parents of all the money they had paid to top up the man’s care to the level previously agreed; plus £1,000 to his mother to acknowledge the council’s failure to provide allocated respite funds. The welcome aspects of this LGSCO response are:
●●The requirement that the council must consider if other service users could have been affected by arbitrary upper limits on hourly rates for budgets and address this
●●The price in any market must reflect the reality of the contractual situation from that provider’s perspective – here, a direct payment relationship with the customer on the  provider’s own terms – not a “bulk hours” deal with the council on the authority’s terms. If the decision to continue funding by way of a direct payment reflected that the council acknowledged the value of that route (for continuity, since the provider was not a council contractor) and promotion of wellbeing for the man and his family, then it should have considered whether the contract for the higher rate in some way provided for wants rather than needs, or whether it was driven by the need for skills specifically around Asperger’s, which had been noted in
previous assessments. The man had not expressed a preference for a more expensive service; it was a service he had received for many years, and the local authority’s own records acknowledged he would not have been able to cope with a sudden change of provider. It was therefore more likely a need rather than a mere want. The LGSCO said: “The council correctly points out the statutory guidance allows it to consider the financial cost when deciding how much to pay to meet a person’s eligible needs. Cost can be a relevant factor in deciding between suitable alternative options for meeting needs. “However, that does not mean choosing the cheapest option. The council can consider best value, but it cannot make decisions based only on financial considerations, as it appears to have done in this case.”

Carer needs

Nottinghamshire County Council had also completed a carer’s assessment for the mother, which recorded in 2018 that she was experiencing stress because of her caring role. It had previously noted this was happening in 2015. The assessment concluded the mother as a carer was “entitled to £150 to use for a carer’s break and also £1,600 a year for respite for [her son]” but the local authority did not pay these sums. Ignoring the wellbeing of a carer who is overburdened by the caring load and ignoring commitments to other family members are unlawful. A carer’s willingness and ability to carry on are critical to a service user’s own reassessment and the £1,600 should have been in his budget after 2015. The carer’s position needed to be factored into any cut to the service user’s budget, under section 27 of the Care Act; and the carer, having been separately assessed as being entitled in her own right, had an unanswerable claim to the money allocated. The LGSCO recommended that the council repaid all the money spent by the complainant’s parents on top of the budget. This recommendation flowed quite properly from the principle of restitution for unjust enrichment during a period of unlawful Care Act process; others were known to be spending money in place of the local authority’s statutory duty to deliver on the care plan.

“There is a trend in ombudsman reports that certain practices do not get the benefit of the doubt but are called out”

The LGSCO did not recommend reimbursement of anything that had not already been found due to the man in the past. And there was no suggestion that the man’s needs had lessened, which is needed for a council to justify cutting payments.

Calling out wrongs

There is a discernible trend in LGSCO reports that certain practices are no longer being given the benefit of the doubt but, instead, are being called out as wrongs unless a council promptly offers further due process. These practices include operating a flat-rate policy, quality control panels and many weeks of pre-assessment signposting. They also include the Three Conversations approach, which seeks to reduce long-term packages through discussions of: family and community sources of support; assessment of risk levels and contingency planning; and long-term outcomes. This has to be right in law. Acceptance of streamlined or interim offers is only a choice if the person knows what they are giving up, and has the capacity to work out the pros and cons of that choice. If one can get this much from resorting to the LGSCO, it becomes increasingly tempting to think of it as a form of informal tribunal for unlawfulness, even it cannot offer a full-blown formal appeal route.

  • In the next issue, we will examine significant LGSCO cases that concern delays in finding appropriate care and excessive delays in completing assessments.
  • Local Government and Social Care Ombudsman: www.lgo.org.uk/

Belinda Schwehr is chief executive of legal advice charity CASCAIDr (www.CASCAIDr.org.uk) and owner of the Care & Health Law consultancy. She has been a barrister, solicitor advocate and university law lecturer

References
Local Government and Social Care Ombudsman (2019) Bath and North East Somerset Council (19 000 003). https://tinyurl.com/ybpg7ll6
Local Government and Social Care Ombudsman (2020) Nottinghamshire man’s care package reduced because of financial pressures, Ombudsman finds. Press release. https://tinyurl.com/rpkxp2b

A complex move to Universal Credit

Charlie Callanan 

Charlie Callanan

— Spring 2020

Universal credit is troublesome when it comes to people with disabilities, especially when they are moving from previous, more generous benefits. Charlie Callanan explains

Universal credit has several faults and failings, as many advice workers know. One fundamental problem is the relatively low amounts it awards. For a lot of people, universal credit is less generous than the previous system of older benefits, known as legacy benefits. This disproportionately affects people with disabilities because all the disability related premiums available in legacy benefits have not been replicated in universal credit. However, following successful legal challenges over the amounts of universal credit payable to disabled people, the government has been forced to take certain steps. These steps include the introduction of laws that:

● Temporarily prevent “severely disabled” people from claiming universal credit (this is called the “severe disability premium (SDP) gateway”)
● Allow for compensatory transitional payments to be made to some disabled people who had to claim universal credit in the past and lost out financially as a result.

The SDP gateway was introduced in January 2019. It stops any person who is getting a legacy benefit that includes an SDP from being able to claim universal credit, regardless of any other circumstances. This gateway is in place until at least January 2021. If the claimant’s circumstances change so that they are no longer entitled to an SDP, the gateway will no longer apply. Claimants who were getting a legacy benefit that included an SDP but lost this because they were “naturally migrated” to universal credit before the gateway was introduced (for example if they moved to a rented home in a local authority area different from where they had been living) can get a transitional SDP amount.

Transitional payments

Transitional payments comprise an ongoing monthly payment and an additional lump sum to cover the period since the claimant moved to universal credit. The claimant must continue to meet the underlying conditions for the SDP to qualify. As the idea is to assist people who are worse off as they have lost the SDP, these compensation payments are not available to those who start to meet the SDP eligibility criteria only after they have migrated to universal credit. However, if they met the entitlement criteria before moving to universal credit but for some reason were not paid the SDP, they could be entitled to the transitional payments. The SDP is worth £65.85 a week for a single person and £131.70 a week for a couple where both partners are eligible. The monthly transitional payments do not work to replicate the exact amount that disabled people were getting under legacy benefits. Transitional payments are paid at three different rates of £120, £285 and £405 per month. The rate paid depends on whether a claim is for a single person or a couple, and whether the claimant is in the limited capability for work and work-related activity (LCWRA) group. For example, where a universal credit claimant has been found to have LCWRA, and therefore already receives an additional amount in their universal credit award because of a health condition, they get only £120 extra per month.

Compensation

In addition to existing payments not covering the loss of the SDP, no compensation is available for the loss of the enhanced disability premium available in legacy benefits. Law firm Leigh Day is involved in a legal case to make the government award compensation that covers the total loss to people with disabilities who had to move to universal credit and were significantly worse off as a result. A different compensation, called “transitional protection”, will be paid on top of the regular award to all claimants who are moved from legacy benefits to universal credit through “managed migration”. This is so they are no worse off than at the time that they are migrated. Most people who are claiming universal credit now are new claimants or those who previously claimed legacy benefits and had a change of circumstances, which meant they had to claim universal credit via natural migration. No transitional protection is available to these people.  At present, the only managed migration is taking place through a pilot in Harrogate, which is due to be completed at the end of this year. No one outside Harrogate will be put through the managed migration process until the pilot is extended to other parts of the UK, although it is not known when that will happen.

“No compensation is available for the loss of the enhanced disability premium”

The government has said it plans for all claimants to have moved fully to universal credit, through both natural and managed migration, by September 2024. Universal credit and changes to it continue to be complex and far from a simplification of the benefits system as trumpeted by the government. The need for people with learning disabilities and the professionals who support them to seek advice from an experienced advice worker where necessary is as crucial as ever.

Charlie Callanan is an adviser and writer on welfare rights

 

Letters

Community Living 

Community Living

— Spring 2020

Religious faith can frame experiences – it is not an escape from reality

Community Living is a great read. I particularly enjoy reading Moments in History, as it provides a historic perspective to current issues and allows an appreciation of what has changed for the better, as well as of the problems still being experienced despite the progress achieved. “When a screen star shone a spotlight” (autumn 2019, page 30) helps us appreciate just for how long parents of people with a learning disability have been fighting for their children’s rights. There is one aspect to it,  however, on which I feel I must comment. It is true that, as Susanna Shapland says, the parents of Robin Elizabeth Rogers – 1950s US TV stars Roy Rogers and Dale Evans – were wealthy. It is also fair to point out, as the author does, that they therefore had options not available to most disabled people and their families, then or now. On the other hand, the argument that their belief that their daughter was a gift from God “could be too abstract for those dealing with day-to-day reality” is very much debatable. For those whose lives are steeped in faith (Christian or otherwise), embracing their experiences in keeping with that is not an escape from reality but a way of living life – with all its trials and tribulations – differently. Living life with a meaningfulness framed through religious beliefs may not be for everyone and may call for a different kind of empathy but should not be diminished. In the end, what matters is – as Shapland rightly points out – that Rogers and Evans used their privileged social position to throw a positive light on the lives of people with a learning disability – and that is certainly something that everyone, whatever their background and outlook, can be happy to affirm.

Dr Anne-Marie Callus

Senior lecturer, Department of Disability, Faculty for Social Wellbeing, University of Malta

Terms reflect individuals and society

I am writing to support Paul Williams’ comments (Whose term is it anyway?, autumn, page 6). Connect in the North has long used people with “learning difficulties” rather than “learning disabilities”. This was originally because it was the terminology our members preferred. It also fits better with the social model of disability. People have difficulty learning but they are disabled by a society that does not provide the adjustments, adaptations or supports that people need. People with other impairments who use the social model may refer to themselves as disabled people, but not usually as people with disabilities in the way that people with learning disabilities is used. As Williams says, over recent years, the use of people with learning disabilities has become more widespread and many of our members use it themselves. We run Stamp Out Bullying training in which we explore words that are acceptable to use and those that might cause offence. Generally, people with learning difficulties tell us that they are happy with both terms. I do not know what the argument is against using Down’s syndrome. It makes sense to me to use it but, if people with Meader’s view Down’s syndrome don’t like it, I would of course adopt their preferred term.

Cathy Wintersgill 
Director, Connect in the North, Leeds

Success in a tough job

In the digital age, it must be a really tough job to publish a magazine. But the sheer quality of Community Living – printing, content, layout, contributors – is as good as or possibly higher than it has ever been. I have been reading it for many years, starting in the living room of David Brandon, its first editor, with him beside me. It was great to see him mentioned in the last issue. Huge respect from me for all your achievements in helping this to happen. The magazine has guided, informed and helped me for close on 30 years now.
Pete Crane
Hesketh Bank, Preston, Lancashire

 

When mass murder was social policy

Community Living 

Community Living

— Spring 2020

Nazi eugenics were based on ‘improvement through exclusion’, where disabled people were seen as bad for the nation’s health so had to be eradicated, says Susanna Shapland

The eugenics movement, with its theory of eliminating the “unfit” through selective breeding to improve a “race”, provided the philosophical basis for Adolf Hitler’s ideas. Many western governments passed eugenics-influenced laws advocating compulsory sterilisation and regulating marriage in the early 20th century. German eugenics was underpinned by a belief in “improvement through exclusion”, which saw certain marginalised people as detrimental to the nation’s health. The way to deal with such people was set out in 1920 tract Allowing the Destruction of Life Unworthy of Living by psychiatrist Alfred Hoche and jurist Karl Binding. They employed both emotional and economic arguments for the elimination of several groups, including “incurable idiots”. The text was well received among the race hygienists of interwar Germany. When Hitler became chancellor of Germany in 1933, he was determined to turn the country into what he called a “community of the people”. In this so-called community, there would be no room for those seen as weakening the nation. He was quick to pass laws for the compulsory sterilisation of those deemed to be carrying “hereditary disabilities”, whether physical, mental or intellectual. Under the Law for the Prevention of Offspring with Hereditary Diseases 1933, around 500,000 people were forcibly sterilised. Those designated “feeble-minded” were by far the main victims of this law, making up 52.9% of all those sterilised in 1934. But Hitler’s real goal was to exterminate rather than regulate those he deemed “unfit”.

Murder made formal

In 1939, the parents of Gerhard Kretschmer, an “idiot” born with severe physical disabilities, asked Hitler for permission to kill their son. The process and personnel involved in Gerhard’s death informed what became known as Aktion T4, named after the “euthanasia” programme’s headquarters at 4 Tiergartenstrasse in Berlin. Under T4, Hitler authorised SS men Dr Karl Brandt and Philipp Bouhler to grant certain physicians the power to give the “incurable” a “mercy death”. A vast bureaucratic structure of euphemistically named front organisations was created to assist in identifying, diagnosing, transporting and destroying hundreds of thousands of disabled adults and children, then cover up their murders via a system of form letters and forged death certificates. The process began with amassing a vast amount of information on all the disabled citizens, from newborns to adults in institutions. This information was then used to decide who was “unworthy of life”. Disabled children were the first to be killed under T4. If selected for death, they were transported to a killing ward and given a lethal injection or starved to death, unless they met their end in a medical experiment. Their bodies were ransacked and organs sold to the highest bidder; some physicians amassed vast collections of organs from murdered children, which they used in research over the 20th century. Between 5,000 and 25,000 children died under T4. The systematic murder of disabled adults came next. At least 100,000 were killed in gas chambers at Grafeneck, Brandenburg, Sonnenstein, Bernburg and Hademar in Germany and Hartheim in Austria. Hitler officially stopped Aktion T4 in the summer of 1941. Despite secrecy and subterfuge, there had been protests from parents and church leaders, and concern over the effect of T4 on the nation’s morale. However, this stopped only the systematic murder of disabled people. The programme continued unofficially as “wild euthanasia”, with victims shot or starved, often away from the Nazi heartlands. Entire asylum populations were wiped out in Poland and the occupied Soviet Union. It is estimated that, in all, around 300,000 disabled people were killed under the Nazi regime.

Paving the way for the Holocaust Aktion T4 laid the groundwork for the Holocaust. Under T4, the methods for efficiently killing hundreds of humans at a time were trialled and honed. Crowd control via deception, processing bodies for organs and valuables and killing by gas chamber were all perfected in T4. Key personnel who worked in the killing centres brought this knowledge with them when they were moved to run death camps. Hundreds of physicians, nurses, civil servants and other professionals allowed T4 to function – yet very few were held responsible for their crimes. The majority of T4 physicians, whose authority acted to soothe popular concerns over the legitimacy of their murderous work, returned to their posts after the war, unrepentant, while the medical profession closed ranks around them. Many nurses walked free because they claimed they were merely following orders. Meanwhile, survivors of sterilisation and the killing wards have largely been denied compensation, and a memorial to the victims of T4 was erected only in 2014.

Further reading

T4 memorial website. www.t4-denkmal.de/Atherton H, Schwanninger F (2019) Finding Ivy: a life worthy of life. Community Living 33(1):18-19 Binding K, Hoche A (tr Modak C) (2012) Allowing the Destruction of Life Unworthy of Life. Greenwood, Wisconsin: Suzeteo Enterprises Evans SE (2004) Forgotten crimes: the Holocaust and People with Disabilities. Chicago: Ivan R Dee Gellately R, Stoltzfus N, eds (2001) Social outsiders in Nazi Germany. Princeton: Princeton University Press

 

Responding to sensory signals

Community Living 

Community Living

— Spring 2020

Responsive Communication: Combining Attention to Sensory Issues with Using Body Language (Intensive Interaction) to Interact with Autistic Adults and Children Phoebe Caldwell, Elspeth Bradley, Janet Gurney, Jennifer Heath, Hope Lightowler, Kate Richardson and Jemma Swales Pavilion Publishing, 2019, 199pp Paperback and ebook £24.95

This highly readable and helpful collection introduces and examines the concept of responsive communication, and presents real-life stories showing it in action. In 2001, academic Melanie Nind and Dave Hewett, now director of the Intensive Interactive Institution, relaunched Geraint Ephraim’s 1980s concept of “augmented mothering” as “intensive interaction”. Since then, it has been used widely and successfully to tune in to the feelings and expressive capacities of children and adults through their body language and other non-verbal communication.  It has proved particularly effective as a form of communication and interaction with people with the most profound disabilities and, more recently, people with autism. One of its primary effects is to reduce anxiety arising from interaction. Responsive communication seeks to build on the work of intensive interaction by paying attention to sensory issues. Like intensive interaction, it focuses on body language and non-verbal articulation, but also pays particular attention to supporting an environment for the individual that minimises the impact of sensory concerns. These concerns are wide ranging, and can include visual and auditory processing issues, emotional overload, reactions to smell and taste, and both over- and undersensitivity to feelings. Oversensitivity can manifest in reactions to footwear and clothes, while undersensitivity can be expressed through people applying violent physical stimuli to themselves. The book explores various strategies to enable people to reduce or alleviate the disabling impact of sensory issues on their lives and their relations with others. These strategies need imagination, flexibility and empathy because, as responsive communication practitioner Phoebe Caldwell observes, if people judge the sensory experiences of those with autism and profound disability by their own reactions, it can lead only to total misunderstanding. This eclectic collection, from Caldwell’s detailed overview to Hope Lightowler’s shocking account of the overwhelming sensory environment of the hospital in which she was detained, allow us to gain numerous perspectives. Much of the focus is on autism, but Janet Gurney of Us in a Bus covers interactions with people with profound disabilities.
Simon Jarrett