The ‘Tom Clarke Bill’ was passed in 1986, and Tom Clarke himself here looks back at what the legislation achieved and what still needs to be done.
The Disabled Persons (Services Consultation and Representation) Act received its Royal Assent in July 1986 after a fierce battle in Parliament. Even now I am astounded that, in trying to force through legislation arising from a Private Member’s Bill, so much depends on luck. Although I was successful, with a huge amount of help, I am still perplexed that the odds are hugely stacked against a backbencher getting legislation through , however laudable
it may be.
1986 was when Margaret Thatcher was at her height; shortly after the Falklands and before the poll tax. I was told by well-meaning and wiser heads than mine, who were regarded as experts on procedure, that she would find a way of turning my Bill into a ‘might have been’ and kill it off. Later they would concede that they had underestimated the impact of the causes for which many of us where fighting, and the determination of so many wonderful people, including those with disabilities themselves, to seize the moment.
At Prime Minister’s Questions the day before the Third Reading, an intervention by Neil Kinnock, then Leader of the Opposition, was stoically resisted by Mrs Thatcher. But he clearly struck a chord, rightly judging that he was speaking for Members on all sides of the House, who were under pressure to support the Bill. Within hours, Number 10’s approach had mellowed and I was gobsmacked to receive a call from the then Government Chief Whip telling me the Government was now of a mind to allow the Bill through, subject to negotiations on some of its technical aspects with Ministers in numerous Departments. This was a huge breakthrough and with the benefit of the adrenaline of the challenges, I was happy, along with John Healey and Peter Mitchell, to meet Ministers right through to the early hours of the next morning.
On the day of the ballot for Private Members’ Bills, as soon as I heard of my good fortune, I had decided to contact a number of people who knew more about the issues than I did. I was soon having coffee with Brian Rix of MENCAP and I later had unstinting support from many other organisations too numerous to mention. Parliamentarians known to be champions of disability rights were quick to join in – Alf Morris, Jack Ashley, Louis Carter Jones among them. Other supporters included Lord Dyfed Wigley of Plaid Cymru and Baroness Sue Massam, still campaigning from her wheelchair on the Cross Benches in the House of Lords. And without Nick Brown, with whom I shared an office, we would never have obtained the numbers when they were required.
Now, thirty years later, we are able to observe precisely what it was all about, how much of the Act was implemented, and most importantly what remains to be done. Much was written about it at the time, when there where campaigns for its full implementation. Thames Television broadcasted an analysis over several weeks, and described the Act’s intentions in an excellent guide they published alongside it, Getting In On The Act.
The booklet’s introduction was prescient. Underlining the principal objectives of the Act and indicating that for the first time, people with disabilities would have the opportunity, crucially, to influence their lives, they got to its heart. Offering legitimate caution, it said that the Act “hardly had an auspicious start”, with repeated references from Government spokespersons about “…when resources become available…”
While strongly urging people to fight for the Act’s measures, the guide also gave practical advice on how to be effective. People with disabilities would now have a greater say on the services provided. These would not depend on where you live. Postcode lotteries in service provision would be a thing of the past.
The Act addressed the problem of ‘transition’. No longer was it acceptable that young disabled people leaving schools, many of which were residential, would be sent home to inadequate housing, often with aging parents to look after them. These young people would have access to Further Education and Training or would be helped with employment. The Act insisted that both parents and children would not be without guidance and support.
This legislation challenged the reality of people in institutions or hospitals being discharged to what was available and not necessarily what was most suitable. There would be an end to the concept that, as a disabled person, you were not asked what you wanted but told to accept what was available. The ‘revolving door syndrome’ would be a thing of the past. Advocacy was a right not a bonus. Among many commitments was the pledge that with the disabled person’s agreement, a representative would have the chance to put forward their views and ensure that they are taken into account, by local authorities.
As l look back, it seems to me that if the Act had been fully in operation, the scandal of Winterbourne View, the Gloucestershire Hospital where disabled patients suffered violent abuse, would never have happened. Assessments of individuals rights and needs, coupled with an increasing role for advocates, would have put an end to discrimination and there would be a right to proper consultation and appeal.
The 1986 Act was the first of many to address support for carers, again with proper assessments of their rights and needs. There would be a legal requirement for written statements which would relate to appropriate packages of care. When making assessments, Local Authorities must allow people with disabilities or their representatives the opportunity, within a reasonable period, to say what they wanted and what they needed. People with disabilities should be entitled to assistance for communication and translation where it is needed and this was hugely important in respect of health authorities. There was an obligation for people with disabilities to be represented on bodies which advise on decisions about them.
So, thirty years later, now comes the hard question: what did the Act achieve and where do we go from here?
Undoubtedly, many people have benefited from its provisions and the focus on disabilities has been strengthened immensely and accepted by Governments with differing views on aspects of social justice. Section 4 of the Act has probably had the most influence. Local Authorities were instructed to assess the services individuals may require under the Chronically Sick and Disabled Persons Act of 1970. Although superseded by subsequent legislation, this section has had the greatest influence in terms of change delivered for people with disabilities. The introduction of ‘Care in the Community’, when properly exercised, owes much to the 1986 Act.
Progress has been made on the rights of carers and the crucial issue of transition, but much more still remains to be done. Recognition of advocacy is much more widely practised. Comprehensive legislation on disability rights, based on the principles of the 1986 Act were introduced by David Blunkett, who also strengthened the 1995 Act legislated by William Hague. The Disability Rights Commission, which the latter resisted, was introduced by the 1997 Labour Government and then subsequently amalgamated with the larger Equality and Human Rights Commission.
It cannot be right, though, that implementation of the Act has been staggered, with successive Governments citing ‘resource requirements’. There is still too much hate crime; assessment centres are causing fundamental problems; and far too many people with mental health issues and learning disabilities are being sent to prison.
In my Second Reading speech I said: “Seen in its proper context, the Bill will give increasing recognition to the rights of Disabled people to have a full say in decisions which concern them. It recognises that decisions are usually taken for, not with, disabled people; that disabled people have rights as well as needs; that disabled people are uniquely qualified to contribute to determining their needs; and that disabled people represent an untapped resource for society, offering great potential not just for their own individual achievements but for the enrichment of the whole of society.”
Notwithstanding what the 1986 Act has achieved, there remain considerable challenges. It would be complacent in the extreme if we failed to recognise, as a society, that in terms of Human Rights for people with Disabilities many injustices remain. As in 1986 they are crying out to be addressed.