"Family values"

David Cameron announced recently that: 

"A family test on all government policies will be formally introduced into impact assessments from this autumn. It will see every single domestic policy examined for its impact on the family. Policies that fail to support family life will not be allowed to proceed."

There were two narratives which accompanied this speech: one concerned ‘troubled families’, and how Louise Casey was going to be unleashed on yet more families in order to ‘strengthen’ them; the other storyline was about encouraging and supporting marriage. 

Yet these two narratives obscure the potential of a ‘family test’ for policies which affect the lives of families with disabled children.  It will be interesting to see whether the planned impact assessments examine whether policies support these families - or whether as is too often the case disabled children and their families are treated as invisible when it comes to the ‘mainstream’ policy agenda.  It would be even more interesting if the government looked at the impact of their current policies.

Over the last twenty years or so, the policy and legislative framework that affects the lives of disabled children has opened up more and more opportunities and support.  This improvement has continued with the Children and Families Act 2014, which is informed by many of the issues identified by research into families' experiences, for example the need to bring together education, health and social care.  

At the same time, however, there are other policies which - far from supporting families with disabled children - have actually made their lives more difficult since 2010.  Here are five issues which would be exposed if the Coalition government really did carry out proper Family Impact Assessments of their policies.

Families with disabled children are facing increasing poverty

The link between having a disabled child and poverty has been recognised for many years: if Disability Living Allowance is discounted (as it contributes to the additional costs incurred) 4 in 10 disabled children are living in poverty. Half of these live in households with a disabled adult and of these 50% live in poverty. As both the Children’s Society and the New Policy Institute point out, this is probably an underestimate because the additional costs of looking after a disabled child are considerable and are by no means always covered by Disability Living Allowance. 

Contact a Family’s 2012 survey found that increasing numbers of families with disabled children were going without basic necessities: 1 in 6 were going without food; 1 in 5 were going without heating. Many feared things were going to get worse and there were also reports of increasing stigma and negative attitudes towards disabled children and young people.

Current policies are exacerbating the risk of poverty amongst families with disabled children.  A cumulative impact assessment of the changes in tax and benefits, carried out by Landman Economics and the National Institute for Social and Economic Research, found that the reforms are more negative for families containing at least one disabled person, particularly a disabled child. Families with both a disabled adult and a disabled child were particularly badly affected, losing an average of £1500 per year each (see Figure 9).  

Unequal access to childcare

Families with disabled children experience unequal access to childcare, according to a recent Parliamentary Inquiry  This takes the form of:

• higher hourly rates being charged for looking after a disabled child
• local authorities failing to provide the level of support necessary to enable parents of disabled children to take up the 15 hours pw of early education which all 3 and 4 yr olds are entitled to
• insufficient supply of qualified and experienced child care providers.

(see also the survey carried out by Contact a Family)

The Inquiry heard from many parents who had had to give up, or were unable to return to work, because they could not afford and/or could not find suitable child care. At the same time, the current policy agenda on support for childcare is slanted towards helping families where both parents are in work - something which is less likely for families with disabled children.

Funding for short-break services is under threat

Over the 20 years or so prior to 2010, there had been steady, if slow, improvements in the support that local authorities offered to parents of disabled children.  The number of disabled children receiving short breaks rose from 57,383 in 2008-09 to 162,831 in 2010-11  and in 2011 the current government introduced a statutory duty on local authorities to provide a range of short break services. They also committed an investment of £800m over the four years from 2011/12 to 2014/15 in these services.  

However, this money formed part of the Early Intervention Grant and was not ring-fenced.  Moreover, this grant has recently been reduced and abolished with further reductions in the replacement funding structure being made for 2013/14 and 2014/15. While the statutory duty to provide short break services will to some extent protect these services, they are under threat, with recent government statistics indicating that funding on short break services for disabled children is falling back.

Mental health services for children and young people are in crisis

Freedom of Information requests submitted by Young Minds revealed that the majority of local authorities in England have cut or frozen their Children and Adolescent Mental Health Services (CAMHS) budgets since 2010 and three quarters of NHS commissioners are currently cutting or freezing their CAMHS budgets. Increasing numbers of children are being admitted to adult mental health units or being admitted to hospitals many miles from home, as a result of the closure of services for children and adolescents. The government has itself recognised that mental health services for children and adolescents are in crisis. Their  response was to set up a Task Force, which is unlikely to produce anything useful because there is no additional funding.

Institutionalisation of young people with learning disabilities and/or autism

Some of the families who are in particular need of support are those with adolescents with learning disabilities and/or autism.  Inadequate support for families, and also the difficulties of accessing sufficient support as these young people move into adulthood can result in admission to institutional provision which may not provide appropriate support and may be difficult to leave. 

Such situations are apparent in the slow progress that has been made at moving people out of secure hospitals and Assessment and Treatment Units following the exposure of abuse at Winterbourne View.  In spite of the programme set up by the government to achieve a “signficant and permanent reduction” in the numbers in such units, there are more people being admitted than are leaving.  During the last quarter for which data is available, more people - 358 - have been moved into such places than were supported to move out - 261 (you have to scroll down and click on the actual data to see this - the Department of Health do not draw attention to it on the main web page).  

Worryingly, the government’s response to this is to look to large voluntary sector organisations and to so-called ‘social investment’ to produce yet more ‘buildings-based’ solutions - rather than co-producing solutions with young people and their families (see Chris Hatton’s three blogposts of 15 August Part 1 and Part 2, and 17 September ) Proposals such as that to build a 110 bed health provision in Northamptonshire for young people with mental health needs, learning disabilities and/or autism raise the spectre of a return to long-stay hospitals. 

Was David Cameron’s promise to examine “every single domestic policy…for its impact on the family” an empty promise?  Did he really mean that “Policies that fail to support family life will not be allowed to proceed”?  I am sure he didn’t have disabled children and their families in his mind when he made this speech - but if the government really does implement the idea of family impact assessments they need to start by examining the impact of current policies on these families.

"Independence"

During the Scottish referendum campaign we’ve been inundated with the word “independence”.  I don’t think anyone can be in any doubt as to what independence means to those who advocated a Yes vote. To them, “independence” means autonomy, self-determination, the right for Scots to “decide our future for ourselves”.  People talked of “taking power to ourselves”, of “our own independence”.

Disabled people also have a vision of “independence”.  For forty years, since the late 1970s, we’ve campaigned for our right to self-determination, to autonomy.  

Autonomy means ‘self-rule’, being able to make choices which determine what you do. It means freedom from external control. 

Until disabled people started to challenge how they were treated, the assumption was that - if physical or cognitive impairment meant that you required assistance to go about your daily life - then you were “dependent” and had little capacity, or even need, for self-determination. Lack of control over your life meant that you could not choose where to live, whether to work, to marry and have children, how to participate in and contribute to your local community. 

The ‘light-bulb’ moment for disabled people came when some of those who were living in a residential home in Hampshire realised that it wasn’t their need for assistance which meant they couldn’t choose even what time to go to bed, but the way that assistance was provided.  Out of that realisation was built a movement which challenged the definition of “independence”.  As Simon Brisenden, one of the pioneers of that movement argued, disabled people are victims of an:

"ideology of independence.  It teaches us that unless we can do everything for ourselves we cannot take our place in society.  We must be able to cook, wash, dress ourselves, make the bed, write, speak and so forth, before we can become proper people, before we are ‘independent’."

Instead, the independent living movement redefined “independence”:

"in a practical and common sense way to mean simply being able to achieve our goals.  The point is that independent people have control over their lives, not that they perform every task themselves.  Independence is not linked to the physical or intellectual capacity to care for oneself without assistance; independence is created by having assistance when and how one requires it."

Over the years, disabled people campaigned for the removal of barriers, for anti-discrimination legislation and for government policy to change so that - instead of institutions and services which denied choice - public resources were directed in ways which enabled people to live in their own homes, with choice and control over the support they needed to go about their daily lives.  In setting out a 25 year strategy for full citizenship for disabled people, the last Labour government adopted our definition of independent living as:

"all disabled people having the same choice, control and freedom as any other citizen – at home, at work, and as members of the community.  This does not necessarily mean disabled people ‘doing everything for themselves’ but it does mean that any practical assistance people need should be based on their own choices and aspirations."

Internationally, this aspiration for “independence” was recognised by Article 19 of the UN Convention on the Rights of Persons with Disabilities, which concerns the right to choice and control over where you live and to “personal assistance necessary to support living and inclusion in the community”. It is significant that the right to choice and control is set within a human rights framework: unless disabled people have choice and control over the support they need to go about their daily lives their human rights are at risk, as has been illustrated over and over again.

So, just as it was clear in the Scottish referendum debate, that “independence” meant self-determination, having control over the country’s future, so disabled people have been clear that “independence” is about being able to make decisions for ourselves, about having choice and control, being freed from others making decisions for us.

Unfortunately, politicians and service providers are currently applying the word “independence” to us in a way which means the opposite.  In the policy arena of welfare reform, “independence” is defined as not being “dependent” on benefits.  The need for support is seen in entirely negative terms and the barriers created by discrimination, disabling working conditions and/or a lack of jobs are ignored. Instead, the cause of “dependency” is laid at the door of individual motivation and pathology, and the route to “independence” is to be found through “fixing” people’s attitudes by sending them on the discredited Work Programme and the application of sanctions. 

Disabled people’s organisations used to campaign for support to the right to work, for changes to the way work is organised and against discrimination.  Now the punitive impact of welfare reform on so many individuals means the focus has shifted to emphasising “vulnerability”, ill health and inability.  It has become dangerous to talk more positively about a right to work as this can sometimes be seen as colluding with the “shirkers versus strivers” narrative.   

In the social care world, the retrenchment is similarly damaging. Here “independence” is firmly defined as doing things for yourself, no longer in need of services, or only  needing much reduced services. Along with the Orwellian use of the word “efficiency”, which really means cuts in services, enabling “independence” means providing less or no support. 

Nowhere is this more apparent than in the final report of the Local Government Association’s Adult Social Care Efficiency Programme.  

This report reveals that the councils which achieved the necessary “efficiencies”, i.e. cuts, were those that, for example, embarked on a programme of reducing people’s existing care packages by doing what they called “promoting independence reviews”.  Some councils also achieved budget reductions by encouraging staff (through training and/or specific recruitment programmes) to change disabled people’s and family carers’ expectations of what services would provide. The ‘good practice’ examples set out in the report praise the reductions in expenditure and greater reliance on friends, families and neighbours, while ignoring the increased isolation and diminished quality of life.

The rhetoric associated with the implementation of personal social care and health budgets still uses the language of “choice and control” which disabled people promoted for so many years.  Increasingly, however, the narrative is changing to reflect what local authorities are actually doing - which is dramatically reducing their expenditure on support for disabled people.  Expenditure on adult social care has reduced every year since 2008 while at the same time the numbers of people needing support has increased. There is a distinct danger that we will lose all the ground gained in the last 30 years.

During the 1990s, all political parties gradually came to recognise that disability policy should be about removing barriers to, and providing support for, independent living.  By 1995, all parties supported anti-discrimination legislation and all came to recognise the importance of disabled people having choice and control over the support needed to go about their daily lives.  “Independence” was recognised as self-determination and autonomy, not about “doing things for yourself” and doing without support.  Support - whether in the form of personal assistance, equipment and adaptations, or an additional costs benefit (Disability Living Allowance) - was seen as necessary to enable disabled people to access equal citizenship. 

The big question for all us is how do we get back to that narrative. Unless we do the future is very bleak indeed.