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04

LEGISLATION, STRATEGIES AND REPORTS FOR THOSE WITH A LEARNING DISABILITY

AIMS AND LEARNING OUTCOMES:

The aims of this chapter are to highlight:

 The differences between the various forms of legislation and associated documents

 The various laws, White Papers and reports that have an impact specific to those with a learning disability

 A number of issues within these documents that have a specific impact upon nurses and nursing practice.

By the end of this chapter, the reader will be able to have a working knowledge of:

 The differences between a Parliamentary Bill, a Parliamentary Act, a Green Paper, a White Paper and an independent report

 The various pieces of legislation and associated documents that have a specific impact upon those with a learning disability

 How these various documents may impact upon their own nursing practice.

PAUSE FOR THOUGHT 4.1

Those who are not aware of and understand their history are condemned to repeat its mistakes: discuss!

INTRODUCTION

The area of health and social care law, Green Papers, White Papers and reports is both fascinating and complex. It can certainly be confusing and frustrating! Yet, not to have a working knowledge and understanding of these relevant Government documents that impact upon the lives of those with a learning disability could, and probably will, have serious consequences on the quality and forms of services that people with a learning disability receive. Understanding these government documents and policies will help you to both comply with the law and provide high-quality care to people with a learning disability.

It must be stated here that those who have a learning disability are subject to the same laws, both civil and criminal, as everyone else in society; having a learning disability does not exclude the person from the consequences, rights and responsibilities of the law and their conduct under the law, and neither should it! However, there are a number of laws that have a specific impact upon those with a learning disability and these will serve as the basis for this chapter.

Hanif (the 2nd year student nurse), Marcel (the young man who has Down’s syndrome) and Ziva (Marcel’s sister who also has high-functioning autism/Asperger’s syndrome) have very kindly agreed to act as your guides throughout this chapter.

This chapter will highlight the contents and the impact of the wide variety of Parliamentary Bills, Parliamentary Acts, White Papers and reports that impact upon the lives of those with a learning disability over the past 40 years.

DIFFERENCES BETWEEN BILLS, ACTS, WHITE PAPERS, GREEN PAPERS AND REPORTS

It seems almost like every day that this, that or the other Bill, Act, report or whatever is released and highlighted in the daily newspapers, on radio and TV. There is no way that we, as members of society, can ignore such media attention and debate into what may often seem to be rather dry, obscure, obtuse and even apparently irrelevant issues. And neither should we. As nurses, as health care professionals we live and work in a legislation-rich environment and that is the way it has always been, always will be and indeed must be!

So, what is the difference between a Parliamentary Bill, a Parliamentary Act, a Green Paper, a White Paper and an independently commissioned report?

Marcel: Welcome to this brief highlighting of the various laws and reports that have such a huge effect on me and those like me. To be honest, I find that I can’t quite get my head around much of these laws and reports and I am not alone here. Therefore, to a large extent I have to rely upon you, our reader, and your nursing and medical colleagues to be aware of, understand and implement these laws. So, again, welcome and let’s continue. Ziva, my lovely sister, what is a Parliamentary Bill?

Ziva: Well, a Parliamentary Bill is an intended piece of legislation which originates from either the House of Lords or the House of Commons. Some Bills start life as part of the annual Queen’s speech to Parliament and then become part of the Government’s legislative programme whilst others are presented and sponsored by a backbench MP (any backbench MP can present and sponsor a Parliamentary Bill) or a member of the House of Lords. An example of the former could include the ‘Care Bill 2013’ and an example of the latter could include the ‘Autism Bill 2009’ which was sponsored by Cheryl Gillan (MP).

Marcel: So, how exactly does a Bill become law?

Ziva: Taking the 2009 Autism Bill as an example, its parliamentary journey included first and second readings, committee stage, report stage and third reading in the House of Commons. This process was then repeated in the House of Lords. The Autism Bill returned to the House of Commons where any amendments proposed by the Lords were debated and either accepted, amended or discarded. Once consensus had been reached by both Houses of Parliament, the Bill was presented to the Queen for signing. Once signed by the Queen (as Head of State), the Autism Bill became the Autism Act 2009.

Marcel: Thanks for that, sis! Hanif, how does a Bill differ from an Act?

Hanif: Well, a Parliamentary Act is a Parliamentary Bill that has successfully completed its parliamentary journey, been presented to and signed by the sovereign (the Queen or King), acting in her or his capacity as Head of State. Then, and only then, does it have any legal power and can be implemented. Some Parliamentary Acts serve to prohibit certain actions or behaviour of individual citizens or organisations whilst others permit certain actions or behaviour. An example of the former could include the Marine Broadcasting Offences Act 1967, which made illegal pirate radio stations such as Radio Caroline. An example of the latter could include the Abortion Act 1967, which permitted legal abortions under certain conditions.

Marcel: So, what are Green and White Papers?

Ziva: A Green Paper is a discussion or consultation document that is issued by political parties around specific issues such as mental health, transport or the environment, whereas a White Paper (such as Valuing People (DH, 2001)) is a policy document that is often published by the Government. One of the purposes of a White Paper is to present service delivery guidelines which, although not mandatory, would be very good practice if they were to be implemented.

Marcel: So, how do reports fit into all this?

Hanif: An Independent Report is a report into specific events or issues and is often written or commissioned by organisations, such as Mencap, that are outside of formal government structures. Examples of such reports could include The Francis Report 2013, Mencap’s Death by Indifference (2007/2012) and the report into the abuse of people with a learning disability who were residents at Winterbourne View hospital in 2011. These independent reports often serve as a catalyst both for changes in how services are organised and delivered, and for the amendment or generation of new legislation.

Marcel: Thanks for this, Hanif and Ziva. I have a slightly better understanding of these various documents. Now, we will look at a number of these documents that have an impact upon me, those like me and those who are reading this.

BETTER SERVICES FOR THE MENTALLY HANDICAPPED (1971)

This White Paper came about partly as a result of a number of critical reports into the standard, type and quality of care that those with a learning disability received at a number of mental handicap (learning disability) hospitals in England and Wales. This report recommended halving the number of hospital places for those with a learning disability and that long-stay hospital settings for people with learning disabilities should gradually be closed and replaced with residential and ‘day care’ support in the community. Personal assessment of service user needs and greater involvement of the families of those with a learning disability were highlighted (Concannon, 2005).

Marcel: It took many years before many if not most of these recommendations became a reality for me and my friends.

JAY REPORT (1979)

The Jay Report was set up under the chairmanship of Mrs Peggy Jay. The Report called for a review of nurse training and proposed a new model that was more in line with the philosophy of ordinary living. However, the Report was critical of large institutional forms of service provision located on the edges of towns and cities and argued that such residential provision did not allow for community engagement. The Report argued that those with a mental handicap/learning disability had the right to live in an ordinary house in an ordinary street and to use and benefit from ordinary community resources. The framework of services should be one that both respects the person using the service and also meets the person’s needs. Finally, the Report recommended that mentally handicapped adults should have residential provision in or near the social and geographical communities in which they spent their childhood or early adulthood (Concannon, 2005).

Marcel: Once again, the issue of where I was to live was prominent in this report, although the language used throughout was that of rights and choice. However, it is likely that most people like me would not have been asked to have contributed to this Report.

MENTAL HEALTH ACT 1983

The Mental Health Act was the first piece of mental health law since 1959.

Part 1/Section 1: sets out the legal definition of learning disability (mental and severe mental impairment) as being an ‘arrested or incomplete development of mind which includes a significant or severe impairment of intelligence and social functioning’.

Part 2/Sections 2–5: allows for compulsory or voluntary admission to hospital either for assessment or treatment of a serious mental health issue. Section 5 allows doctors and mental health/learning disability nurses to prevent those with serious mental health issues from leaving a hospital. This section is applied if the patient is at high risk of harming themself or others if discharged from hospital.

Parts 3–5 deal with patients concerned in criminal proceedings or who are under sentence, consent to treatment (more on this in Chapter 6) and mental health tribunals.

NHS AND COMMUNITY CARE ACT 1990

The NHS and Community Care Act introduced an ‘internal market’ into the supply of health and social care within England, Scotland and Wales, with the State (local authorities) being more an ‘enabler’/broker than a direct health and social care provider. Local authorities were tasked to take the lead in enabling social care assessment and provision. The Act restructured the NHS into NHS Trusts and included the establishment of ‘fund-holding’ GP practices.