Monday, 11 April 2011

Speaking up on disability - interview with Tim McSharry of the Access Committee for Leeds

Tim McSharry is head of Disability and Diversity for the Access Committee for Leeds [ACL].  It’s an unfunded body run by volunteer advocates that campaigns on behalf of disabled adults, carers and older people. By taking up dozens of cases every year the  ACL highlights issues of crucial importance for disabled people, thus supporting them to access their mandatory rights to vital public services.

Tim first became involved with the ACL in the 1990s, not long after a permanent deterioration in his eyesight led to him becoming registered blind. He won’t thank me for saying this, but he’s a cracking bloke who’s prepared to work with all and sundry whilst being nobodies fool. Determined to show his disgust at the public spending cuts he not only caught the Unite train to London but spent a good half dozen hours walking with thousand of others on the TUC march. 

Just as well therefore this interview was conducted on the way down.

Does disability necessarily entail deprivation and limited employment opportunities?

It shouldn’t, but the reality for a significant number of individuals and families is it does, with unavoidable serious consequences impacting on health, wellbeing and independence.   

So the question is can disabled people who are able to work be helped to find jobs that pay a living wage, with reasonable prospects in supportive and accessible environments?  And for those who as a result of illness, injury or disability are unable to work, are benefit levels and back up advice and care support services sufficient? Again for too many disabled people the answers to these questions are quite simply no.

Ten years ago I was delivering some training to the Regional Co-ordination Unit for Government Offices down in London. From our charities prospective we were highlighting the fact that it’s a massive cost to society when people are out of work. That’s the case whether someone’s disabled or non disabled.

The figures show that levels of unemployment amongst disabled people are higher than average, and I have listened to many who can’t find work express the view that it’s because employers don’t truly examine their talents before “giving” a post to a non-disabled person. In large part I feel this is because there remains a lot of ignorance amongst employers about the assistance disabled people may or may not require at work, or a reliance on some outdated myths and stereotypes.  Indeed the evidence suggests that disabled people have just as good or better record in relation to timekeeping and absence when compared to their non-disabled colleagues.

Access to Work, whereby employers get assistance to help with work related adjustments when employing a disabled person, like support with transport, equipment and adaptation costs at workplaces, is clearly a good scheme. It’s one that needs expanding. But its benefits will only be felt if there is an integrated approach. So whilst the Disability Discrimination Act 1995 [now replaced by the Equality Act 2010, except in Northern Ireland where it remains in place - ed] required service providers and employers to take steps to remove barriers, that blocked disabled people’s participation, it often took a lengthy battle, usually legally, to try and ensure this was the case. [For more on this see below]

In terms of benefit levels whilst they are not generous what’s often much more of a problem is ensuring those who are entitled to a particular benefit actually get them. For example when you look at the Independent Living fund - that delivers financial support to disabled people - or the former Incapacity Benefit - that became Employment and Support Allowance three years ago - then there are people who were able to fulfil the criteria to allow them to live independently.

Unfortunately because of the complexity of the system there are also many people who fall at the first hurdle and are not able to access the benefits. The benefits were there but there was an inherent complexity within the system that everybody agreed needed to be addressed.

So is it a good thing that the coalition government through Iain Duncan Smith, Secretary of State for Work and Pensions, has taken up the challenge of making Welfare Reforms?

One of the saddest things is there was a real opportunity to work in partnership with disability organisations, both nationally and locally, to design a holistic system that would truly be built around improving life chances through greater participation and inclusion of disabled people at every conceivable level across society. 

We need to be developing meaningful opportunities for training and employment, and taking positive action to formally recognise the many advantages and values of enabling disabled people to carry out voluntary work without fear of having benefits withdrawn because of an ignorant and abstract idea that voluntary work directly equates to employed work. 

Voluntary work enables a person to develop skills, awareness and confidence that may allow them to move into paid employment. But, blanket polices discriminate. For some individuals living with ill health, injury, disability or chronic 24/7 pain, or care needs that can vary hourly, including many people living with hidden disabilities or mental health related care needs then opening up access to supported levels of long term voluntary work can provide real cost savings to the public purse by helping to maintain family and social networks. All of which often results in the need for less costly interventions through Health and Social Care services, adaptations or housing, or the Criminal Justice System.

Sadly, these opportunities appear to have been missed under the heading of it’s too expensive and we must get rid of it. The clear move towards a universal benefit would be good if it wasn’t being done so quickly and without any meaningful consultation having taken place. I don’t feel there’s been any real mandate on this and at the ACL what’s coming through is that they are creating so much fear when they are talking of dismantling the independent living fund, the incapacity benefit and the disability living allowance by combining it into one. There are so many anomalies for individuals that haven’t been taken into account. For some individuals it’s going to be a truly destructive.

Are the proposed cuts packages having any impact on disabled people?

At the moment its still a case of wait and see - although I would add that we are starting to increasingly hear about funded projects that assist disabled people being cut - but what’s definitely changed is the climate.  The language that has been employed is giving some people the impression that many disabled people are not in fact disabled. That they are ‘kidding’ in order to claim a particular benefit.

I fear that people who are disabled or on benefits are being stigmatised and this is leading to some people who are frustrated by their own lack of life chances taking it out on disabled people.

I can speak from personal experience on this as the other week I was going through Leeds Station when two youngsters targeted me for some abuse by suggesting I didn’t need my long cane that aids me to get around safely in areas I`m familiar with. In their words “he’s only kidding, he can see, he’s doing that to be able to claim some money, go on take the stick of him” It was frightening and I suspect that for some other person in the same situation it might be enough to make them think about not going out. In my case it won’t, and whilst I can`t say for certain that its been recent media coverage that got those youngsters to talk such rubbish I feel it seems to be increasingly the case as I’ve also heard other disabled people suggest they’ve subjected to similar comments. 

As an aside quite a lot of progress appears to have been made on tackling hate crime against disabled people?

Yes I think that’s true and some of the work undertaken, especially by Stephen Brookes, has been almost Herculean. Within the Police and the Crown Prosecution Service there is more awareness of hate crime against disabled people as following the Fiona Pilkington and Jessica Hardwick case’s attention was rightly drawn to the issue. But it still takes the likes of Stephen, Anne Novis, Katharine Quarmby, Paul Iganski and many other very dedicated individuals to keep this on the political agenda.

Locally we’ve worked with West Yorkshire Police [WYP] to increase the numbers of places where people can make reports and obtain support.  Rebecca Collins from WYP has been really outstanding in supporting this new initiative to increase the number of reporting centres that are genuinely accessible and placed at the heart of local communities. It’s that kind of developing partnership between WYP and Leeds City Council that have made these changes possible.

Can you comment on the impact of the DDA 1995?

It was good the act was passed, but it’s still been a matter of fighting for the resources to make it effective. As way of an example, ACL is currently assisting a family with a disabled child with autism and there are multiple challenges trying to get the services that child needs.

The families’ aim is naturally to get the best possible outcomes for their child such as opportunities to develop their skills, independence and to achieve their real potential without systemic ineptitude or discrimination getting in the way, basic principles that are about valuing and protecting the human rights of all children.

The child was not receiving the consistent one-to-one support they needed within the educational system and as a result the child was being excluded and not being able to access other services. The parents therefore had to fight for the right to educate their child at home, resulting in two separate challenges, one involving the education system and the other in relation to adapting their home through a Disabled Facilities Grant [for more on this see February 3rd 2011 article at

There is no doubt that taking on any bureaucratic system means there is usually a real struggle involved and because of the length of time it takes to understand the policy, process and pick up the expertise needed, very often it leads to people giving up, or accepting a compromise that doesn’t work and leads to additional costs to the public purse further down the line.

Happily, there are many examples across the country where people did take on the system, sometimes with the support of skilled advocates, who ended up securing the educational services and care package that their children needed. But, sadly, there are others, lots more, where other families and children with just as strong a case did not get the help they needed.

In terms of access and equality the DDA has put disability on the agenda but, as with the new single Equality Act, it has not resolved many of the fundamental social, environmental and attitudinal barriers that appear as prevalent now as they ever did, based on our casework.

In conclusion therefore I’d say that those who shout the loudest get what everyone should get. It must be acknowledged there are many great examples where public services have provided an outstanding service in meeting the needs of disabled children, adults and older people, but the system if it was working efficiently wouldn’t need people to be shouting, as it would be working openly and efficiently with processes designed to respond to diverse individual needs, not the other way round which leaves too many individuals and families falling through the gaps, unable to mount any real challenge. 

Personal budgets were introduced by the last government - what’s your view on the impact they’ve had?

For some people they’ve been very positive and it has the potential to increase choices for a lot of people. There’s certainly nothing wrong with the focus on giving people more choice but I feel the evidence is that people from more middle class backgrounds have done better especially as their educational skills help in navigating the process and providing the evidence base that is needed that helps to challenge the system to meet all aspects of their needs. 

The downside of this policy is that many community bases centres have been cut and the loss of some of these services may have unintended consequences in relation to safeguarding duties.

We know that in many cases its only because people use centres that alleged incidents of abuse by their families, friends or carers is picked up on. As they close that’s clearly going to be less likely and the big worry is that when that contact is lost, unseen or unrecognised abuse that is going on will be missed.

In truth, with an increased move towards personalisation of social care budgets, many centres that currently provide excellent specialist care, support and social engagement and also provide a safety net around safeguarding will undoubtedly have to face some hard decisions.  This in years to come will have serious implications in relation to safeguarding policy and practice for all Local Authorities, the NHS, Criminal Justice System and Third Sector organisations.

How devastating a blow would it have been for disabled people living in care homes to have lost their mobility payments? And are you confident that the Government’s climbdown on this issue to 2013 can be made permanent?

The proposed loss of disability living allowance for people in care homes goes back to the heart of the problem, that’s it been done piecemeal with no serious consideration of the impact of the changes. Yet that benefit is critical in allowing people to get out and maintain some level of independence, dignity and social engagement. 

But don’t care homes have lots of things going on in them?

Some do, but even if they all did that’s not the point. The DLA enables people with different needs to be able to do things that they enjoy and are socially rewarding. It shouldn’t be the case that people have to give up all forms of independence just because they need residential care - it should still be the case that people can be able to engage with family and friends outside the home. And in the long run that’s also cost effective because isolating people will hit their physical and mental health which again is likely to result in even more hospital admissions and additional NHS or Social Care involvement.

What are your views on the proposed reforms in the education and health support for children with special educational needs (SEN) and disabilities?

Again its an opportunity missed, we’d love to see how the impact assessment has been carried out and importantly who was involved. Where’s the evidence that suggests this needs to happen in the timescale they are suggesting?

Another opportunity missed is that the harmonising of the various equality acts combined with recent Government moves has ‘watered down’ the duty on Public Bodies to carry out a meaningful Equality Impact Assessments (EIA`s). Its been changed from a duty to a choice and clearly at this current time of 25% budget cuts that’s going to not be a choice. Yet we know that if EIA`s are carried out in partnership with experts across the diversity field then the ultimate result is about meeting the needs of society that we live in - rather than just the budget.

With a new building it will mean planners and architect are less likely to take a fully social inclusive approach around how their plans will impact on the equality, participation and opportunities of disabled people.  And whilst there may be small additional costs associated with the EIA process and improving facilities and environments, by leaving this key element to choice, its again very likely that additional costs will be picked up by public bodies further down the line when challenged under reasonable adjustments and other elements of the Equality Act.

In Leeds we have examples of how ultimately this will add to the costs on the public purse. We have hundreds of unoccupied expensive flats that could have been used to house disabled people forced who are currently living in unsuitable older accommodation. Trouble is when building them no one even considered making them suitable for everyone, or using local planning conditions to ensure at least a percentage of flats were designed and built to Lifetime Homes Standards.  Quite simply, money was not spent ensuring people with disabilities could use them.

In Leeds I am heartened by the fact that the council does appear to be wholly committed to including disabled people within key decisions and in regards to planning applications we are working with councillors and council officers to ensure only certain standards get through the planning process.  We are lucky to have Councillors such as Keith Wakefield, Peter Gruen, Lucinda Yeadon and many others both at an Executive and Corporate level who are accessible and ready to engage with disabled people and other diverse communities at this time of far reaching Government spending cuts to local authorities across England.

Why are you travelling down to the TUC demo in London?

As a representative and Trustee of ACL and because it’s the only way we can express our fears at what’s happening. We are starting to see how the cuts are going to impact on disability organisations and the lives of disabled people and primary carers. Some very effective highly active voluntary organisations within West Yorkshire and nationally are not only seriously worried about their funding but whether they have a future. They are seeing their core funding being cut in some cases by 75%, thus making them unsustainable. Without these organisations where is the voice for disabled people? 

We believe that the Government doesn’t have a mandate for their actions. Consequently Cameron and the other ministers should revisit the cuts package.

What’s your view on measures to give a bigger role to social enterprise, charities and cooperatives in the running of public services?

In the 80s and 90s under the last Conservative government it was said there was no such thing as society. It has gone from none to Big Society.

Ultimately when we talk about the Big Society it’s already self evident in the many volunteers and local self help groups active across all communities. We have volunteers who work very closely with local authorities and other public bodies. The approach should have been about greater partnerships rather than taking funding away from public bodies under the guise of it going to the third sector or public charities to take up these services,

It’s also an absolute mismatch. Look at the safeguarding issues, local authorities and the NHS are much better placed to oversee, deliver and commission services than organisations that may, or may not be for profit. 

The Big Society slogan disguises the decimation of many public services that older people, amongst others, rely on. And I am not sure it will save money in the long run either. The critical need for a comprehensive EIA is essential if only to identify the false economies within such austere and regressive polices, its very likely the hidden costs to the NHS, Local Authorities, Criminal Justice System and other agencies, will far out weight the upfront savings outlined in the comprehensive spending review.

For example cuts are going to hit social care services and when people don’t receive such services to maintain their health and social well being then where are the safety nets that are going to pick up on this? It’s going to be the NHS and in particular the emergency admissions and long term services that are both very expensive.

There’s also going to be increased levels of anti-social behaviour and crime, which the criminal justice system will pick up leading inevitably I feel to the re-introduction of services such as the Youth Offending Teams, and the re-employing of Police Officers and back up staff currently being redundant.

Within West Yorkshire the Neighbourhood Policing Teams have achieved outstanding results at a community level over recent years and if we consider the impact of losing elements of these teams its more than likely these will have a disproportionate impact on many older and disabled people, disabled children and their families. 

The TUC march was an incredible demonstration of how people from all communities and diverse backgrounds came together to express their real concern and opposition to this policy, and when considering the fact that there are potentially so many hidden costs that belie these cuts, I can only hope that someone senior within Government reconsiders the options - after all it happened with selling off the forests?

And last but not least, I owe my very sincerest thanks to Unite for getting me down to London and to Mark, Wayland and especially John for patiently and expertly guiding me round the march in complete safely. (And for a truly fantastic bag of chips)

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