Shaping Our Futures

A conference on Independent Living
sponsored by the European Network on Independent Living (ENIL)

Trends in government thinking on welfare and long-term support

This session aimed to get details of the situation of the Independent living movement in each of the countries represented at the conference, and to look at the way forward for the Independent living movement in Europe.

UK

The main development in Britain has been the introduction of legislation to enable local authorities to make direct payments to enable disabled people to employ PAs. This is a unique situation as it was the direct result of campaigning by disabled people.

There have been positive and negative issues as a result.

The positive things have been that many more people have access to direct payment, and virtually all local authorities have responded positively and said they will use the legislation. Negative points have been around changing the scheme which existed before the new law to fit in with the new system, which has brought people within the community care system and led to people being reassessed which has led to concern about people losing out on support.

Other problems have arisen around the relationship between direct payments and the charges for services which are levied by local authorities. It was suggested that this would be resolved by the government’s emphasis on getting disabled people to go to work where possible, and that the point will be made that disabled people are unlikely to want to do this if all their earnings are taken by paying for support services.

The overall issue of welfare, and Independence living in the context of the welfare system, is becoming ever more important with the growing argument that Britain cannot afford its welfare system, and that disabled and older people are too expensive. There is increasing emphasis on only providing services and support to people who are seen as "vulnerable", and this makes things very difficult for Independent living because its about people not being vulnerable.

Areas of spending are divided into different local areas and by different types of impairments, and this creating wide differences in the support that people receive. Eligibility criteria are being made increasingly tight, and people are finding it increasingly difficult to get services, and getting less and less in the way of services. Some who have been relatively independent are beginning to loss their independence because of this.

Jane Campbell made the distinction been people receiving Independent living packages in some areas, but in others people with the same level of need are only getting what she called "survival packages".

Another important issue is recent moves towards returning to institutional care for people with mental health problems.

It was thought that while we have good legislation, restrictions through charging, eligibility criteria and rationing of services is restricting people. Services have become resource led, and the legal framework is supporting this as the courts have ruled that it is appropriate for local authorities to decide the assistance a person receives by the resources available, even where this contradicts the rights people have for services.

There are questions about the availability of resources. It is felt that rather lack of resources, the problem is that they are spent on the wrong services, such as residential homes and day centres.

One person highlighted the fact that larger amounts of money are often spent keeping people in the criminal justice system, which is indicative of the value society puts on disabled people.

Norway

Using personal assistants is still quite a new idea in Norway. We started as a co-operative in 1990. There is no law for disabled people to have the option of personal assistants, so we have to fight each individual case. This is the biggest problem, and there are calls to get a law to cover personal assistants and the campaign for this is growing. On one day there was an e-mail protest day, and people bombarded their MPs and government departments with e-mail, and there have been other traditional methods of direct action.

However, there is some concern that legislation might undermine the current co-operative approach.

Assessments are also an issue. They do not take account of the fact that the more active you are, the more assistance you are likely need; There is meant to be self assessment for people who can do so, but this does not always happen;

Sweden

The direct payments system began in 1994 but the movement for Independent living had begun in 1987. It had started as a pilot project which then spread quite quickly with groups persuading local authorities to use resources that were used for home help and community care services for direct payments.

The success of this attracted the attention of politicians who supported moves for a national framework, although there was considerable opposition from those who believed that a strong public sector was essential to maintaining social welfare.

There are considerable limits to the project law. It only covers people under 65 and personal assistance for not more than 20 hours a week to cover essential activities. This was only around 7,000 people. Other people remain covered by previous laws which require local authorities to provide support, and this can include cash payments in some circumstances.

One drawback of the national scheme is that pay rates are now decided through a centrally negotiation system, which removes some of the flexibility and has led to less generous terms for many PAs.

As in other countries, there is a strong establishment of charities which are not controlled by disabled people, and these tend to push politicians their way and squeeze out the organisations of disabled people.

Economic pressures are also beginning to cause problems. When people are re-assessesed some are given fewer hours of assistance. People can appeal against this, but even when they win this the authorities disregard it and say that they just cannot afford to provide what the person is entitled to. There is talk of means testing direct payments, and as this has already happened in some places in relation to transport for disabled people, it seems likely that this will also happen.

Ireland

When the Dublin CIL was established it set up structures to ensure that member groups and other agencies it worked with adhered fully to the concept of Independent living in policy and practice.

There are now 17 CILs in Ireland and, partly due to funding and partly because it was in their original plan, these became decentralised and independent in 1997. They all have to be controlled by disabled people.

There is now a problem with charities encroaching on the CILs’ territory. The network is particularly vulnerable because direct payments are not covered by legislation, and many of the schemes are resourced with finance from government employment initiatives, so they are set up in terms of enabling people to become employed.

In some areas it has been local disabled people deciding that they want to do different things. Dublin CIL has set up a company to work nationally to try and influence and support local CILS, and to work politically and strategically to get the principles of Independent living taken on board by statutory services.

However, this is proving difficult because of funding limitations, and working against established funding systems for traditional services like respite is a struggle. There is also a lack of faith in disabled people’s ability to manage money. This has lead to some of the money which should have been used for PA services being spent on traditional services, which are often provided by the traditional charities.

The fact that families of disabled people receive a care allowance can also make it difficult for people to become independent, as it means taking money from their family.

Despite these problems, there was a feeling that the CILs in Ireland have dramatically and permanently improved the situation of disabled people in the country, and that it is important to note and celebrate this achievement.

Germany

A law on long-term care insurance which was passed in 1995 is causing considerable problems for the movement in Germany. It has lead to a much more medical approach to support for disabled people. Many people have been reassessed, and many fear that they may have to go or go back into institutions.

It had been promised that most people’s long-term care needs would be met through the insurance scheme, but in practice many people need additional money from the social security system, and this is means tested. Payments from the insurance scheme and social security are limited to cover what is seen as essential support and direct employment of PAs is ruled out by the legislation.

The level of support a person is given depends on an assessment and points system determines what a person gets. People have little say in their assessments. They can then choose whether to receive a service or a cash payment - but anyone who chooses to receive cash has to visited by a nurse several times a year for an assessment of their health. The person has to pay for this visit!

Services which are run by disabled people have had to cut themselves back to ensure that they can survive in the new system.

The new system was the result of a long running debate on how long-term care should be paid for. Costs had risen steeply in Germany because of increasing demand and because a previous system of using conscientious objectors from conscription to provide support had kept costs artificially low.

Austria

A direct payments system was introduced in 1993 but the level of payments is very low. People are free to spend the payments as they wish, including employing PAs, but there is currently some debate about whether there should be more control over people.

Most disabled people still receive assistance from their families. People without families often have difficulty getting by.

Economic issues connected with meeting the criteria for the single European currency have led to substantial cut backs in public spending in Austria. Spending on direct payments have been cut by about 10 per cent, and future plans include the introduction of a voucher school.

Concerns about the costs of social welfare are very high.

General issues to come out of these discussions

• there is a problem with charities which try to take over the name of Independent living without using the ideas and concepts which should be attached to it;

• there have been attempts to patent the term Independent living, but it has not any possible;

• we need to try and set standards for independent living, but avoid over-professionalising the movement;

• the movement needs to tap into the human rights agenda, especially as this has a strong profile at the European level.

• most countries have severe controls on public expenditure and there is widespread debate about the cost of welfare;

• we need to promote the idea of inclusion backed up with anti-discrimination legislation.

Day Two

Welcome
Jon Snow, Channel 4 News, UK

Too few of us are aware just how delicate much of this equipment is. It’s not just baggage handlers, it’s us as well who need to recognise just how sensitive this equipment is. Here am I, somebody who can only complain about a rare puncture on my bicycle.

Human Rights and Independent Living
Rachel Hurst, Disabled People’s International

Many of us have met at independent living meetings here, in other parts of Europe, in the United States, and we have to go on because the concept is still not fully understood.

The 48 member states of the United Nations which signed the Universal Declaration of Human Rights in 1948 recognised the, "inherent dignity and the equal and inalienable rights of all members of the human family," as "the foundation of freedom, justice and peace in the world". They declared that, "all human beings are born free and equal in dignity and rights. They are endowed with reason and conscience and should act towards one another in a spirit of brotherhood."

Article 2 says that "Everyone is entitled to all the rights and freedoms set forth in this Declaration, without distinction of any kind..." But disabled people are not mentioned specifically. At that time we were not conceived of as a specific group whose rights might be violated, but as unfortunate individuals who should be the passive recipients of charity and social provision - where the national economy allowed.

Even returning heroes from two World Wars, who were unable to maintain their pre-war lifestyles, were excluded from their communities in special villages or institutions, albeit that these were often in pleasant surroundings and the disabled veterans were given ample funds to reward them. There was no idea - anywhere in the world - that these men and women had the "right to self-determination and to freely pursue their economic, social and cultural development" as stated in Article 1 of the International Covenant of Civil and Political Rights - nor that they had the right to full and equal inclusion in the society for which they had fought so hard. Nor was it a consideration that democratic societies perhaps had a duty to alter to ensure the inclusion of their disabled veterans.

Most countries, with the exception of the Nordic bloc treated their civilian disabled population even more carelessly, either consigning them to institutions or living lives without social benefit or service protection.

And so things remained for disabled people until the end of the 1960s when disabled veterans started returning to America from the Vietnam War. Because they were a living example of the futility of the war, they were fodder for the anti-Vietnam press, so the government did not reward them and many were treated extremely badly - as were the very severely wounded soldiers from Britain’s Falklands War in the early 1980s. At the same time as the veterans’ return, a group of severely disabled people had managed to get an integrated university education at Berkeley, California, which was a hotbed of the many civil rights movements that were active in the USA.

These disabled people learnt many things both from their own experience and from the other civil rights movements. They realised, along with the disabled war veterans, that disability was not a matter of impairment but one of discrimination. They knew, just as black people and women had articulated, that it was not their personal characteristics that were the problem, but the discriminations they faced within society itself. And they knew that rights had to be fought for not just for some groups of people with impairments but for all disabled people, regardless of impairment.

This realisation of disability as a human rights issue also clarified for disabled people what the solutions were to getting those rights. Undoubtedly there had to be legal support for civil rights but there also needed to be legal protection against discrimination. Services for disabled people had to be based on the concept of equal opportunities and non-discrimination and not on the traditional solutions of segregation and specialisation. We needed inclusive education and transport, not special buses and special schools. We needed programmes that allowed us choice and control over our own lives. And it was in this human rights context that Independent living was born.

Independent living is, in fact, the practical solution to ensuring self-determination and the free pursuit of an individual’s economic and social development - those empowering philosophies of the Convention on the Civil and Political Rights.

It should be impossible to break the link between Independent living and human rights. The basic principles under-pinning Independent living should be reflected in civil rights legislation for disabled people and in all policies and programmes that support our inclusion into society.

But, as most of us know only too well, neither the legislation nor the policies to support our Independent living have been implemented or enforced in many countries. In fact the term "Independent living" has been hijacked by many professionals to give credibility to their programmes and policies which are, in reality, based on the needs of administration and cost and not on the rights of the individual.

At the international level, disabled people have always been invisible in the human rights Conventions. It was only in 1983 that the World Programme of Action Concerning Disabled People talked about disabled people and equal opportunities and integration and full participation. In 1991 the United Nations produced a special report on Disability and Human Rights, where, for the first time, the systematic and daily violations suffered by disabled people were catalogued. There was no direct mention of Independent living but a great deal was said of the horrors of putting people into institutions as a solution to their exclusion.

Up until 1992, the only policies regarding disabled people in the European Community were based on rehabilitation. Although both the European Union and the Council of Europe talked about integration in their rehabilitation policies, there was no promotion of the concept of self-determination and freedom for the individual, nor any duties put on the member states to legislate directly for provision based on self-determination. After 1992 and the inclusion of disabled people’s own organisations in advising the EU on disability policy, the words "Independent living" were used but there was little clear understanding by policy-makers as to what that really meant. The many strong, well-funded professional rehabilitation organisations operating at the European level did not understand the concept either.

However, in 1993, the UN Standard Rules on Equalisation of Opportunities for disabled people says: "The purpose of these Rules is to ensure that girls, boys, women and men with disabilities, as citizens of their societies, may exercise the same rights and obligations as others". The Rules cover all the areas necessary to ensure Independent living and even go so far as, in Rule 4, including personal assistance and interpreter services as important measures to achieve equalisation of opportunities.

As I said at the beginning, Independent living is disabled people’s solution to achieving our rights. Despite the slowness of international commitment to disabled people’s rights, disabled people themselves have been working on Independent living initiatives all over the world. As you will have read in the accompanying literature to this conference, disabled people in Europe have been running Independent Living Centres since the late 1970s. Disabled people have come together to network regionailly on Independent living since 1989.

Many of the programmes in the developing world which are described as community based rehabilitation or income generation are, when they are run by disabled people’s organisations, Independent living. Different words are used to describe the same process. People often only identify a programme as Independent living if it concentrates on personal assistants or advocacy. Others see Independent living as advice and information and access, but it is all these things or any combination of rights based factors.

What has to be remembered is that there is no blue-print for Independent living except the blue-print of rights. Implementation of Independent living cannot happen unless the programmes are based on rights, promote rights and ensure rights. What Independent living is not - is service provision. It is disabled people sharing their knowledge and expertise to empower others and to ensure their freedom and self-determination.

Nation states in Europe have different approaches to giving disabled people their rights. Several countries have non-discrimination measures enshrined in legislation - but only Sweden has an enforcement mechanism in the appointment of an ombudsperson. Many of the Nordic countries have policies underpinning services for disabled people that support their rights and legislation too, but in reality are far from ensuring rights for all disabled people. The UK has the direct payments legislation supporting the employment of personal assistants, which is a major breakthrough for disabled people in this country, but this does not extend to all ages or impairments and is voluntary not obligatory.

This highlights another important point about Independent living - it is only rightful when it is available to all disabled people, regardless of impairment, severity of impairment, age, gender, race, culture, sexual orientation, class or caste. If I have left anyone off of this list, please add them! When

Nor should there be any discrimination in recounting its history. I keep on reading accounts of the history of the Independent living movement and words like "founding fathers" are bandied about. I think it is most important that when we are talking about a rights based approach that we bring rights into everything we say, as well as what we do. There is no doubt at all that the first Independent living initiative in Berkely, California, happened because of one disabled man - Ed Roberts - but since he joined forces with both men and women to form the rolling quads and then set up the first Centre, disabled women have been significant leaders too. We need her-story as well as his-tory!

I would like to end by again referring to the Universal Declaration, Article 7. It says that "All are equal before the law and are entitled to equal protection of the law." As I have shown, disabled people in Europe and the rest of the world, do not have protection of the law. We have to ensure that we cause a revolution that gives us that protection. Not only protection through non-discrimination legislation but also protection in all legislation which is relevant to disabled people - legislation regarding social welfare and benefits, health, safety - but above all legislation that supports personal freedoms and justice.

I hope that this conference is yet another instrument of that revolution, and perhaps we’re going to have to be just a bit louder and a bit more revolting.