Inequalities and Equalities for families of people with intellectual disability

I was delighted to be asked in December 2013 to provide some brief closing comments to Mencap's  carol service [see

http://www.mencap.org.uk/ for info about Mencap]. 

The Chief Executive, Jan Tregelles, just asked me to "say something about learning disability". Below is the text of my remarks that Jan also used I think at a repeat service the following evening:

 

Whatever your beliefs, at this time of the year we are encouraged to think about families and what they mean to us. 

We are used to hearing that families are important. Politicians tell us that their policies will support families best. When we tell other people about our lives, we naturally talk about our family – whether we are a son or daughter, a parent, a brother or sister, a grandparent, an aunt or uncle. When we have a particularly close friend, the highest praise that we can give is that they are “like a member of the family”. 

Even when we have had terrible experiences within our family, the idea of the family is so powerful that people yearn to establish their own family and vow to make their family a better place for their children. 

Families are at the core of the new strategy for Mencap. You might think that this is obvious and that surely families were always at the core of Mencap’s strategy. Perhaps it is best to say that Mencap is committing itself to families again. 

From the perspective of a University Professor, I’d like to offer some suggestions about what the priorities might be for Mencap as we decide how best to support families. I only have a few minutes today, so I will say something about parents and parenting.

Let’s start with Mencap’s Objects as a charity. We exist for the benefit of people with a learning disability – and then there is something else that is written in brackets in our objects, that we exist also for the benefit of the families and carers of people with a learning disability. It is almost as if families and carers might be an afterthought or a secondary consideration. They are not. The reason for this is that you cannot separate understanding or supporting an individual from thinking about or considering their family.

Research evidence supports this argument that individuals and their families cannot be separated. In the UK and similar countries, the way that we bring up our children as parents and what we are able to invest in our children has a strong influence on their life chances. Both of these aspects of parenting are influenced by poverty and deprivation. Poorer parents are more likely to experience stress and mental health difficulties and this affects their ability to develop the most positive and nurturing relationships with their children. Poorer parents also have fewer resources to invest in their children’s development and education.

So, strengthening families and especially supporting parents is one way to improve the life chances of people with a learning disability.

This is where we hit some problems. Other research data show that families of children with a learning disability face two very significant inequalities. Inequalities are differences in the health or social well-being of a group of people compared to other people in the UK. Inequalities are differences that are avoidable – that we can change. Inequalities are not differences that are fixed by biology or genes, or that parents somehow deserve, or that are somehow their fault.

One inequality faced by parents of children with a learning disability is that they are more likely to live in poverty. Children with a learning disability are more likely to be born into poverty, and also families of children with a learning disability are more likely to end up in poverty. So, parents face the stress of poverty and they have fewer resources to invest in their child.

A second inequality is that parents of children with a learning disability are two or three times more likely to experience high levels of stress or have mental health problems when compared to other parents. Again, this affects the ability of parents to nurture their child. Very worryingly, these inequalities in parents’ health are already found by the time their child is five years of age. Once established, these inequalities are hard to deal with and probably get worse over time.

What does Mencap need to do for families? My suggestion, perhaps my challenge to Mencap, is that the focus should be on what to to do about these big inequalities facing parents and families of people with a learning disability throughout the UK. This will not be easy, but who else will take on the challenge? This is about injustice, unfairness, and things happening that are just not right. For families, every new change to policy that makes things worse, every cut to services, is like kicking someone when they are already down. Is that really what we want from society? Mencap needs to be there to pick people up, to shield them from the blows, and to fight for change.

What I have said so far probably sounds like a familiar story for a charity. This is how all charities talk, especially when they want your money.

To finish though, I’d like to offer some additional perspective on families. The message of the Christmas story is also one of hope. Although the challenges facing families are real, there are at least two areas of Equality, not INequality, that are worth mentioning.

The first is one that I cannot prove with my research evidence. Parents of children with a learning disability love their children just as much as any other parent. There is no inequality there.

The second Equality is something I can support with good research evidence. Although they report more stress than other parents, parents of children with a learning disability report similar levels of positive well-being and positive perceptions about their child when compared to other parents.

So, a second challenge for Mencap is also to harness this love and positivity to work WITH and alongside families of people with a learning disability to change the inequalities. I hope that all of you in this church tonight, and all of your families, will be with Mencap on this journey. 

Thank you again for your support.

Nadolig Llawen, Merry Christmas.

Expunging radical behaviourism from history

Simon Baron-Cohen argues that Radical Behaviourism ought to be retired as a scientific idea [http://www.edge.org/response-detail/25473]. The nails in the behavioural coffin seem to be that the development of behaviour analysis stopped with Skinner in the 1950s (it is hard to see where the ideas of modern behaviour analysis feature in this retirement anti-eulogy), and a killer whale trained by behaviourists attacked people.

I have been the first to be critical of behaviour analysts for their sometimes poor and insensitive ways of communicating about the use of behavioural methods for the benefit of humankind [see http://profhastings.blogspot.co.uk/2013/10/the-challenge-for-behaviour-analysis-in.html and also http://profhastings.blogspot.co.uk/2013/03/autism-and-evidence-5-15-criticisms-of.html]. In addition, like every other area of applied psychology and clinical or educational intervention, there are examples of poor and also unethical practice by behaviour analysts. Poor practice and unethical behaviour are not unique to behaviour analysis, but equally behaviour analysis is unfortunately not immune to these problems.

Rather than a direct critique of Baron-Cohen’s suggestion, I thought that I would imagine a world in 10 years time following UN action to expunge radical behaviourism from history and so to remove all intervention approaches developed from these historical ideas. Here are a few of the headlines:

Nuclear melt-down around the world

Unable to use evidence-based practices of behaviour-based safety, nuclear reactors have melted down around the world and every government has shut down power generation reactors. Although heavily automated, the nuclear industry has to rely on some human beings to make it work safely and effectively. The ability to analyse why safety staff fail to follow safety procedures, and to base training and supervision arrangements on these analyses, was outlawed this month in an effort to expunge radical behaviourism from history. Behaviour-based safety was built on core scientific concepts derived from the early work of Skinner and then more than 60 years of additional scientific development.

All-time high for rates of suicide

Untold misery has affected families around the globe as suicide rates hit an all-time high. In the UK, the National Institute for Health and Care Excellence was forced by a government bill in 2017 to remove Dialectical Behaviour Therapy (based on radical behaviourism, expunged from history in 2014) from its list of recommended interventions for suicidal people and those with Borderline Personality Disorder. The UK healthcare system has struggled to offer effective treatments and support, and this is reflected in a report on suicide rates published today by the Office for National Statistics.

Teachers no longer allowed to teach

Mass protests by teachers in every country of the world led to a total shut-down of education systems internationally. Teachers’ leaders were angry at the loss of almost all of their effective teaching strategies. One teacher remarked: “No-one told us that nearly all of our evidence-based education strategies were based on motivational principles and learning approaches derived from radical behaviourism. We thought Skinner and his followers were devils. How are we going to teach the world’s children now? This is the end of society as we know it.”

Shock move as children with autism no longer able to communicate

The Picture Exchange Communication System (PECS) has been helping children with autism to communicate for more than two decades. PECS symbols have been made illegal during crack-downs on underground use of radical behavioural ideas. The Police have been confiscating the PECS materials and burning them in bonfires in towns and cities throughout the UK. Children with autism have offered little complaint, but then they have no way of expressing their views any more. Spray paint graffiti outside one special school read: “Who’s unethical now, and where’s our voice now?”.

554 voices – What people with intellectual disabilities and families and carers think about challenging behaviour

Numbers are not everything. However, the world tends to listen more to larger numbers of people. One feature of the Winterbourne View scandal in the UK is clearly that people with intellectual disabilities (ID) whose behaviour challenges services (those with challenging behaviours) were not listened to. Unfortunately, although individuals with challenging behaviour and their carers and families have communicated with elegance and passion about what they need in a post-Winterbourne era, their voices have not yet resulted in suitable action.

Either directly connected to the Winterbourne View scandal, or going on currently anyway, are several related pieces of work in the UK. Thus, there is a NICE review of interventions for challenging behaviour [http://guidance.nice.org.uk/CG/Wave0/654], A Unified Approach [http://www.rcpsych.ac.uk/publications/collegereports/cr/cr144.aspx] is being updated, and several working groups are producing guidance on challenging behaviour services and especially on definitive reviews of Positive Behaviour Support as the guiding intervention model for the UK [http://www.bild.org.uk/our-services/journals/ijpbs/].

Until now, these reports and guidelines have not benefited from systematic research-based analyses of the voices of people with ID and their carers and families. Two new pieces of research will hopefully help to change this situation, or at least contribute to what needs to happen next. My colleague Dr Gemma Griffith and I have carried out two reviews of qualitative research studies focused on how people with ID experience their challenging behaviour and the services provided for them, and families’ and carers’ experiences. The first of these studies was published in the latest issue of the journal Clinical Psychology: Science and Practice [http://onlinelibrary.wiley.com/doi/10.1111/cpsp.12053/abstract], and the second will be published soon in the Journal of Applied Research in Intellectual Disabilities [http://onlinelibrary.wiley.com/doi/10.1111/jar.12073/abstract].

If you do not have access to these pieces of research through a University or other library, you could try asking Gemma (g.m.griffith@bangor.ac.uk) or me (R.Hastings@warwick.ac.uk) for copies…

554 voices

These two new research reports summarise the voices of 554 individuals with ID and challenging behaviour and carers and family members. In combination, these voices are louder and perhaps all the more powerful because of the consistency in the views represented and their direct relevance to the current debates.

In a previous blog [http://profhastings.blogspot.co.uk/2013/04/the-most-significant-and-original-data.html] I explained a little about why it can be useful to combine evidence across a number of research studies about the effectiveness of intervention approaches using a process called systematic review and meta-analysis. A similar process can be applied to qualitative research to draw together findings from smaller studies and to present a new analysis of the messages across research. In this way, the voices of small numbers of people can be amplified and evaluated within the broader context of findings across multiple research studies. This is not a simple summary process – giving an overview of the range of things said – but does involve additional qualitative analysis and interpretation. So, the two new research reports do not replace or negate the value of existing individual pieces of research. Instead, they offer an additional perspective. For those more convinced by numbers though, the new analyses also offer significant additional value (about 50 times the size of typical single qualitative research studies)!

“I’m not a patient, I’m a person”

In our first paper, data from qualitative studies with 163 individuals with ID and challenging behaviour are synthesised. There are some loud and clear messages for everyone currently working in the field of challenging behaviour and producing the large array of official reports. We present a summary picture that describes a vicious circle of challenging behaviour. First, there is considerable imbalance of power in ID services settings (people with ID are not in control of their own lives) and considerable dislike of challenging behaviour service provision. Trigger events for challenging behaviour (often the behaviour of staff members) occur in this context, and lead to challenging behaviours occurring. The response from services and staff is often some kind of restrictive intervention. Such interventions are experienced as aversive, and this feeds perceptions of imbalance of power and dissatisfaction again with services.

Although the typical experiences of services by people with ID and challenging behaviour are negative, our analysis includes positive dimensions. In particular, people with ID talked about their motivation to change challenging behaviour, which they also disliked, and their interest in learning new strategies to help with their challenging behaviours. People with ID also talked about how much better their experience was with staff who had good interpersonal skills, a respectful attitude, and treated them as individuals.

“He’s hard work, but he’s worth it”

In our second paper, we analyse data from 17 studies reporting the experiences of 391 family members and carers. An important starting point for the analysis, but one that is not often explicit in individual research studies, is the Love that parents have for their children. Families and carers do find challenging behaviour difficult, but this love underpins everything – it helps families through the tough times, it drives parents to seek excellent support, and it explains families’ frustration when services do not live up to expectations. Although this underlying Love might seem obvious, it does need to be made explicit.

The remainder of our analysis focuses on some of the more negative experiences faced by families and carers. A loss of a wider self-identity is apparent with lack of opportunities to live a typical life, coupled with family life being much harder work (so not being a relaxing environment). Family members also experience significant emotional and physical strain dealing with challenging behaviour. 

Perceptions of services were also very interesting. Families and carers wanted all services to have appropriate expertise in challenging behaviour, but emphasised the need for wholistic and joined up services not necessarily services that are just about challenging behaviour. Thus, there was the sense of a need for more challenging behaviour “literacy” across health and social care and education. Services were also perceived as creating more stress for families than the challenging behaviour directly, and supports provided were often inadequate for the level of families’ needs (thus creating some of the additional pressure – perhaps making things worse rather than better).

There were also positive views of services. Families appreciated professionals and services who offered tailored, stable and proactive support.

Conclusions

I won’t go on any longer because I’d be in danger of reproducing all the findings from this new research. Instead, I wanted to give you a flavour of the findings. I would also encourage everyone to get hold of these studies, think about the evidence, and use the evidence to inform service design, commissioning and day-to-day practice and training. This research tells us more about what it might be like to be in the shoes of individuals with ID and challenging behaviour and their families and carers. Five hundred and fifty four voices deserve an audience. I hope that this work will convince sceptics (for example: How can we rely on the views of one loud voice during consultation processes?), and also demonstrate again the value of applying high quality research methods to data in the ID field.

As for the UK response to Winterbourne View? No excuses. You have the data, now DO something!!