Shaping Our Futures

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

PDF, 107 KB

Workshops

Workshop A: Work in Germany and Austria

Chair: John Evans, Hampshire Centre for Independent Living, UK.

Speakers: Swantje Kobsell (Germany) Manfred Zrb (Austria)

Germany:

On 1 April 1995 the Federal Government introduced a new law on long-term care insurance which was said to be an improvement on the former system where means tested benefits were paid to cover the costs of personal assistance.

Article 2 of this Law was titled ’Self-determination’ and it stated that the benefits from the insurance should enable people in need of assistance to lead an independent life and achieve human dignity. It also emphasised that the care provided should focus on maintaining or regaining physical, mental or psychological strength. In a further paragraph it stated that people had the right to chose the service provider.

Disabled people and their organisations had little influence on the passage of this law, and four years after its implementation there is increasing concern amongst disabled people that this new system is threatening personal autonomy. The reason for this concern is the way the Article 2 regulations, of which there are more than a hundred, are being interpreted. The encouraging spirit of the law is being lost and in practice it is starting to control people’s lives. .

This practice consists of the disabled person being assessed for one of three financial levels by the insurance company and then being awarded a sum of money which can be in cash or in kind. Prior to the introduction of the new law, politicians claimed that people would not require additional funding but this has not proved the situation as nearly 70 per cent of all claimants require additional benefits.

All health insurance companies are independent and people select the company according to what they offer. If the money awarded is insufficient when a claim is made, the disabled person then has to apply to Social Services. We have lost the progress made on getting the social model of disability accepted during the 1970s and 1980s. The new system is based on the medical model, and focuses only on personal hygiene and sustenance, plus a small amount of housework. Care tasks are timed, allotted points, and limited to an average of 30 minutes. Social activities are excluded.

Disabled people are also subjected to a visit by a nurse between one and four times a year to check their health and wellbeing.

Service provision by disabled people for disabled people is struggling to survive in this new scheme as they are expected to work on the same basis as the non disabled service providers. The Bremen Co-operative, of which Swantje is a part, is very demoralised as its contract is based on the units system.

It was recently placed in a position where it either went bankrupt or gave in to this system. The Co-operative has opted for submission in the hope that it can still somehow work out and maintain a quality service.

It works to four competencies and disabled people can:

• select their own personal assistants

• decide when and how this personal assistance will be delivered

• control the personal assistants

• control the money spent on personal assistance.

These competencies are not part of the insurance wording or practice. Schedules and the provision of personal assistants are determined by the service providers. Disabled people can seek another service provider but the practices are similar and disabled people are finding it hard to maintain the self determination they had gained previously.

Self-determination was not on the agenda of the law makers who ruled out the employer model of personal assistants by stating that personal assistants cannot be employed by the disabled person. If a disabled person lives within a family, the money is paid to the relative/s to continue providing the support required. This is obviously the incentive to keep the disabled and or older person at home, with all the ramifications that can have for the disabled person.

Austria

In Austria disabled people only have a cash service which is given under the Assistance Money Law that came into force in July 1993. Social services have little or no influence on what is going on. Since the law has been in force, increasing numbers of care providers have come into being. Unlike Germany, there is no regular medical monitoring.

There is a growing discussion about how money is given to disabled people but there appears to be little movement towards changing this situation to the relief of disabled people and their organisations. Disabled people are free to make all decisions about employing personal assistants.

The disability movement made five demands under this particular law but only four were permitted. These were:

• The money should be paid directly to the disabled person;

• Payments to be irrespective of age Include all impairments;

• Financial services should be equal throughout the whole of Austria;

• Financial services should be the same amount as the actual cost of the care

This last one was not accepted, making it difficult in some instances to get all the support required. A disabled person also has to require upwards of fifty hours of personal assistance a month. Eighty five per cent of funding comes via Federal Government and fifteen per cent through social services who are responsible for improving the structure of providing care.

A decision has been taken by Federal Government not to build any more institutions before 2010 at the earliest.

Participants questions:

Q. How is the money raised in Austria?

A. Through taxation. Before the new law financing care money was only available for older and disabled people if there were no other state benefits for them. The volume of payments is 10 billion Asch. per year. This money was financed in part through the tax volume and pensions contribution. Since July 1993 an additional 0.4% is a sickness fund insurance which is paid half-and-half by employees and their employer, and an additional 0.5 per cent contribution by those already pensioners. (volume around 8 billion Asch.).

The effect of this mixed system was never seen as part of the health insurance system. We who are affected by this system are obviously very pleased about that.

Q. Is there any difference in cash for the under and over 65s in Germany?

A. There is no differentiation in law concerning age. In the development of the law, disabled people and older people were served by different agencies. We had been worse off when we were in the same organisations as the service was even further reduced for disabled people.

Manfred added: In Austria there is a difference where someone works but if neither partner works there us less of a difference.

Swantje continued: Lots of nursing agencies have been set up and there have been many changes for disabled people since the introduction of the new law. 400 DM is lowest amount in the three levels of payment. 10 DM per hour = 40 hours, and 10 DM is a very basic payment. 700 DM = 20 hours from agency.

Q. Is the disabled person the legal employer in the German cash system?

A. If you take the cash you can do what you like! Promotion of the black economy.

Q. Do you think older people in Austria want to be looked after by relatives?

A. They have gained because they can stay in their homes.

Q. In Austria are the costs covering being a legal employer adequate?

A. We have a regulation which covers part time or low earnings workers which mostly applies to students and housewives. On 3800 AS per month, there are no insurance requirements, other than accident insurance which is the lowest amount of insurance. Disabled people employ several PAs so earnings do not go above 3800 which saves considerable taxes. It also saves a lot of personal administration.

Workshop B : The UK situation

Facilitated by Jane Campbell and Frances Hasler, co-directors of the National Centre for Independent Living, UK.

The workshop began with a brief appraisal of the situation for direct payments in Britain following the passing of the Direct Payments (Community Care Act) in Britain in 1996.

Research by the Policy Studies Institute has shown that most local authorities say that they will introduce direct payments schemes, although the situation in each local authority area varies. The National Centre for Indicative Living (NCIL) is in touch with around 30 per cent of local authorities.

Local authorities remain concerned about proper use of and accounting for payment, although there have not been any examples of misuse. They are also concerned about equity between people receiving direct payments and people using direct services, and there is also concern about how to show value for money.

There are a number of issues which need to be addressed:

• the assessment system looks at the need for care, need Independent Living - we need to change the way that assessments are made and improve training for staff involved in assessments;

• there can be inequity between direct payment users who need 24 hour support and can use PAs for social activities, and those who need less support and can only use them for essential tasks;

• local authorities have tended to use pilot schemes which provide direct payments for those who ask loudest and leave out the rest. This is dangerous and we to work to ensure that direct payments are available to people who are less articulate and have less experience;

• there is need for better information on direct payments - video may be especially useful;

• pilot schemes may delay implementation of a full, proper scheme;

• there is a need for direct payment support schemes, and there are some good examples of these.

• the exclusion of people over 65 needs to be addressed.

Questions

Q. Are administration costs as high for people on direct payments as they are for local authorities?

A. No, but good employment practices can increase the cost. Some authorities allow people to pay below the threshold where they would have to begin to pay National Insurance contributions, but government guidance says that the authority should include enough to cover these contributions which are legally required.

European Union directives may have an effect on this situation.

Q. How do direct payments relate to charging systems?

A. Most local authorities in Britain now charge for social care services, and direct payments do conflict with this and also act as a disincentive to disabled people going out to work. It is important to lobby on this issue

Q. Will political changes in Northern Ireland affect direct payments?

A. There is not an Independent living movement in the Province. Resources are very low and the funding base needs to be increased. NCIL has had a consultant working in Northern Ireland with the Health Boards, but not social services. People in Northern Ireland may have more success working with the CIL in Dublin.

The future

Several points were made for the future progress of direct payments and Independent living:

• efforts should go beyond just lobbying and be put into people becoming policy makers;

• social work must be re-constructed (or de-constructed) and social work practice must reflect the social model of disability;

• training for social work staff needs to change;

• we need to get past having "pilot" schemes and set up an "airforce";

• we must keep to the principles of direct payments and Independent living;

• we must concrete on and highlight the cost benefits of Independent living.

Workshop C: The situation in Eastern Europe

Facilitated by Gordana Rakov and Adolf Ratzka

Eastern Europe is a very broad area, with many different states which are diverse in terms of their political systems, economics, social policy and cultures. This makes it difficult to sum up the overall situation of Independent living in these countries.

However, there things that the countries in this area have in common. All countries are post-communist and are in a state of transition. The social infrastructures are very limited, with little public transport, poor housing and virtually no accessible accommodation, poor availability of enabling aids and waiting lists for entry into institutions. There is generally a very low level of disability awareness and disabled people remain largely "invisible" in these society.

There some good points, such as the culture of collective responsibility and some state disability benefits. The services that have been available, such as some "home help" type services, have been based on a very medical approach.

It is therefore unsurprising that disabled people living in these countries tend to have low levels of ability and lack self assertiveness. This means there little in the way of organised activity by disabled people for Independent living, although some initiatives do exist in Prague, Slavia, Bratislava, Moscow, and Belgrade.

The use of the term Independent living is not consistent. Some schemes concentrate on providing wheelchairs and transport and working on access issues, others are running Personal Assistance schemes. This work is mainly funded from abroad, from aid from the United States and European Union and PHARE.

Some support also comes through commercial sponsorship and donations, although it is not always clear whether the prime aim of this is to assist disabled people or raise the profile of the companies’ involved.

There are some very clear parallels that can be drawn with disabled people in Western countries in general, and some specific similarities. There are general parallels in terms of disabled people striving to be de-institutionalised, families taking control of disabled people’s lives, and the shift in responsibility for disabled people from the medical profession to the social care professions.

Specific similarities which were identified included the strong influence of religion, as in Ireland, and the dangers of professionalisation of Independent living amongst a select few disabled people, which some people saw happening in the UK and elsewhere.

A number of steps were identified for future progress:

• build up networks to provide mutual support and learn from each other;

• develop exchange programmes;

• establish training programmes to ensure that a wide range of people develop skills for Independent living;

• improve the use of existing resources by diverting them into Independent living schemes.

Plenary

Chaired by Kevin Mulhern, disabled broadcaster and producer of the long-running television series Link, which covers disability issues.

Kevin Mulhern began the session by noting that the day’s discussions, both formal and informal, were looking at Independent living, as opposed to independent existence, and going beyond just talking about people being enabled to live in their own homes.

He recalled making a television programme about a person trying to leave a residential institution and talking to one of the people who ran the institution and claimed that it was, "virtually a hotel," and the disabled person being interviewed said residential homes would be a viable alternative to Independent living on the day that the head of a major charity looked at their watch four thirty and saying that they had to get home because dinner is at 5 o’clock and a bath is at 7 o’clock.

Facing Our Future summary

Anne Marie Flanagan, Dublin Centre for Independent Living, Ireland

There followed a brief summary of the discussions which has taken place at the Facing Our Future conference in Hampshire the previous weekend. This had covered what was referred to as the "dream of Independent living", and touched on issues around:

• organisations outside the movement trying to take over the name Independent living without fully taking on board the concept;

• to ensure that the concept of Independent living is not diluted - "to hold on to the original dream."

• approaches to Independent living other than direct payments;

• to make economic arguments for Independent living while ensuring that the human rights angle remains paramount;

• the importance of the process of Independent living and making sure that people get the right support with their arrangements for Indicative living;

• the importance of self-assessment;

• the need to spread the concept world-wide, and the need to do this through a cellular approach, so that the idea is spread throughout society;

• a recognition of the danger of becoming to bureaucratic and professional and ensuring that the movements maintains its grassroots approach;

• the need to be responsible and take on the issues of Independent living by being part of the overall movement;

• the direction of the CIL movement, and particularly issues around finances;

• the importance of remaining political and making sure that the movement keeps its "bite";

• the need to raise the profile of the movement

A number of ideas about the way forward came out of these discussions:

1. Ensure that there are adequate resources for the Independent living movement and the whole disability movement to work collectively.

2. Ensure the inclusion of all people with disabilities - looking particularly at older people, people with learning difficulties, and people with mental health problems/survivors of the mental health system.

3. Develop local, national and international strategies.

4. Oppose all rationing and means testing of said.

5. Look at more international exchanges to enable people in different countries to learn from each other and share experiences.

6. To emphasise the ordinariness of our lives - "show that we are just ordinary people living ordinary lives. We are not special."

This was summed up saying that people just want, "the right to boldly go where everyone has gone before."

Main debate

After feedback from the workshops (detailed outlined above) the floor was opened up for comments, information and debate.

Kevin Mulhern set the ball rolling asking how disabled people in Eastern Europe perceived people in the West? Gordana Rakov answered that disabled people in the West are seen as very fortunate, and that when people from the East visit they often marvel at the equipment and support available. However, he did go on to point out that disabled people in East tend to forget that things in the West are only like this because people have pushed and fought for them for a long time.

Further discussion followed, covering:

• the disparity between support for Independent living available to disabled in different areas where local government administration within countries;

• the importance of Independent living continues to come up from the grassroots - the recent legislation for direct payments in the UK creates the possibility that it might be imposed on people;

• Independent living must be properly resourced and we need to address the arguments that there are not enough resources to fund support for disabled and older people.

• Independent living and direct payments schemes should not just be a way of reducing the costs of care;

There was particular discussion about how Independent living can be paid for. People argued that taxes need to be at an appropriate level to pay for support for disabled and older people, but the difficulty was pointed out that in most cases people will vote for lower taxation at elections and that this constrains public finances and services.

It was suggested that part of the problem here is the lack of a framework of rights and that if such a framework were in place that funding would have to follow. It was that a framework such as this would need to be under pined by a principle of universalism. In order to achieve this, we need to get beyond politicians and take our message to the wider public. (Jenny Morris )

One person identified the problem that the cost of issues such as support for disabled people are being highlighted more than those in other areas, such as road maintenance, and that this is part of the wider issue of disabled people not being valued in society. (Carl Ford)

Kevin Mulhern pointed to an opinion poll conducted for the Link television programme which showed how the public very clear ideas about there being disabled people who should be helped, but there is also a view that there are some people who are not in need of support - disabled people who are well off and people who are not "genuinely" disabled and are defrauding the system. He highlighted the problem of tackling these perceptions and the need to convince the public.

This problem was seen as happening in many parts of Europe, and that politicians and the media were presenting a very negative view of disabled people, and as a result the public is not getting a true picture of our lives.

Some people remained concerned that the public is not prepared to put adequate resources into benefits and support for disabled people. Others suggested we need to re-faces the argument onto the cost of segregating disabled people, just as we have moved discussion of the medical model of disability to the social model.

This was picked up by another participant who pointed to the large amounts of money being spent on "care" that denies people their freedom, and we need to argue for support frees and enables people.

Another person (Vic Finklstein) highlighted the contradiction in public thinking which endorsed high levels of public spending on primary health care, but then was unhappy to pay the cost of supporting a person who had become disabled as a result of a health problem that is treated successfully.

The difficulty of changing this when disabled people are almost wholly excluded positions of power. There was some discussion about using the media, and the need to adopt shock tactics which we may not be entirely comfortable with.

Kevin Mulhern concluded the discussion by reenforcing the points made about increasing public awareness, and saying that there is still much to be done to achieve this.

Closing keynote speech: Crip Utopia or the end of the welfare state?

Adolf Ratzka, Independent Living Institute, Sweden

Day Three

Making the dream a reality - action to follow up this event

Each participant was asked to come up with a short and a long term action.

These were listed:

• develop support and training programme for individual users - empower people at local level
• seek specific funds to develop European Network on Independent Living (ENIL) approved training
• review and renew the Strasbourg principles to mark their tenth anniversary
• develop a long term communication strategy
• start PA programme in Yugoslavia
• ENIL to network more with central and eastern European countries
• join/infiltrate employers’ organisations, increase our strength
• create a training course for disabled people
• establish a CIL, with staff
• education - for disabled people, for families, for older disabled people
• alliance with older people
• influence the Royal Commission on Long-Term Care in the UK
• expand our numbers
• awareness raising
• anti discrimination law
• bring philosophy and practice about older disabled people together
• make Gerry’s paper accessible and spread it about
• networking for CILs
• inclusion, equal opportunities
• damage limitation on law (Germany)
• more funds for PAs
• publicise IL - let more people know what it is make the case for funding and reallocating resources

Next we summarised this long list into topic headings: