Presentation at the Munich Disability Policy Meeting, November 13, 1995
by Dr. Andreas Jürgens,
legal counsel to ISL, e.V. (Interessenvertretung "Selbstbestimmt Leben" Deutschland e. V. - ISL)
A debate over the legal and social guarantee for so-called "long-term care" (personal assistance) has been going on in social and political circles for more than 20 years here in Germany. The "long-term care insurance"(1) committees (PflegeVG)(2) of the public health insurance concluded that people needing personal assistance could only claim assistance from social welfare if they could not cover the costs of daily care with their income or financial assets. This reduces people who require personal assistance to recipients of "pocket money"(3), and this despite long participation in the labor force and contributions to the insurance funds. This was generally considered unjust and disgraceful in a social constitutional state.
Many people who require personal assistance, however, especially disabled persons, have managed to carve out relatively self-determined lives thanks to inadequate enforcement of the federal social assistance legislation. While social welfare assistance (BSHG) is granted according to income, needs nevertheless are met at this time(4). This assistance is not allowed to exceed basic needs, but it must cover an existing need for assistance fully, as in keeping with social welfare legislation (BSHG) if the person cannot afford the costs.
We all know disabled individuals in need of constant assistance who up to this point have been able to secure help around the clock by an assistant who is present for 24 hours in their homes, enabling a lifestyle independent of institutions. At the same time we know that a reasonable guarantee of meeting this need could not be provided by social welfare in the long term.
It took some time until a discussion on new social legislation to create the structure for insurances to cover "long-term care" reached the parliamentary level. The Green Party submitted a draft for "legislation to guarantee better care" during the mid-eighties which would have provided a comprehensive service guarantee within the framework of federal social legislation without creating a new social insurance. This draft(5) was followed by legislative drafts of the states of Hesse, Rhine Palatinate and Bavaria in the Upper House of Parliament which in spite of basic differences shared one feature: The proposed guarantee for "long term care" insurance grew weaker and weaker, and the very worst of all proposals was chosen as the basis for the support provided by the legal health insurance funds for those most in need of personal assistance by social legislation standards (SGB V)(6). Everybody knew that the proposed assistance would be only a drop in the bucket and that a real improvement of the situation of people in need of "Long-term Care" insurance could not be achieved with such "long-term care" insurance proposals.
Then the "11. Buch Sozialgesetz"(7), the long-term care insurance "SGB XI", was presented to us. After a long and depressing debate within the governing coalition, laborious legislative procedures and a public discussion - solely about costs, holidays, qualifying period, amount of contribution and burdens for the economy - the eleventh section of social legislation was passed shortly before the end of the last legislative session. The insurance for "long-term care " was celebrated as a heroic political achievement closing the last gap in the social net and rescuing the recipients of "long-term care" from the fate of becoming pocket money recipients. The expectations for SGB XI were very high. Even today many disabled persons are surprised and angry when they find out that the legislation provides only for partial and not comprehensive insurance.
In this talk, I do not plan to offer a comprehensive, objective analysis of the SGB XI. Yes, it represent an improvement of the current situation for many, especially for older people. I will concentrate soley on the image of persons in need of personal assistance which emerges from this "long-term care" insurance. Many disabled people found this legislation distressing while it was still being written, they became more so during the discussion of regulations concerning implementation and then after it went into effect on April 1, 1995, they became very distressed at this supposed great feat of social legislation. For many, the slogan "Long-Term Care Insurance"(8) accompanied a feeling that self-determination was in jeopardy. After more than 6 months of experience with the SGB Xl it can be said that - contrary to all bureaucratic reassurances - not only were these anxieties justified, the reality proved to be much, much worse.
A tendency of social legislation which began in the eighties has been continued and perfected by the SGB XI. The legislation is being politically sold to the public by means of an image which has nothing in common with the reality created by regulations. Pleasant-sounding, decoratively written general regulations promise something which the more specific regulations not only do not keep but which, quite the contrary, are punished as lies. The law blurs the social reality. The lawmakers do not want to create clarity, but to obfuscate, they do not want to depict the realities openly and create a legislative impact on them but want to hide them from the view of the public and from public opinion. The SGB Xl is a frightening example of that.
According to par. 2 of the social code of law SBG XI the services of "long-term care" should help the recipients to lead a self-determined and independent life as far as possible safeguarding the dignity of the person involved. The general formulation which I call "legislative poetry" does not find expression in the more than 100 regulations of the social code of law. On the contrary the SGB XI is dominated by a spirit of outside control. The structure of SGB XI reveals this, and it has been confirmed in praxis - in part through experiences of suffering - after the first half year of implementation.
Concerning the structure: the SGB XI insurance creates a whole network of regulations for implementation, ranging from guidelines about who needs assistance to agreements and measurements of quality insurance to contracts for provision of "care" and agreements on reimbursement. This creates a bureaucratic superstructure which, lacking consultations with the recipients or opportunities for influence, reduces the person in need of personal assistance to an object of welfare services by the insurance funds, medical services, care facilities and the social and health bureaucracies. Organizations of disabled persons may only participate in the creation of guidelines for assessment of need and contractors are obliged to work closely with organizations of disabled persons on the measures for quality assurance, whatever that means. A participation of organizations of older persons is not at all provided for.
The entire process is determined by the insurance funds which are responsible for reimbursement and the operators of "care services". A participation of the recipients does not take place. Even in the state committees which are to advise on payment issues and the operation of care services the persons concerned are not represented. This is an expression of the concept that people who need assistance are passive, dependent on the care by other persons, incapable of self-determination whose care must be determined and provided. The concept does not only contradict the reality of most disabled or older persons but is a proof that the SGB XI insurance prevents self-determination of the persons involved instead of promoting it.
During the 15 year old history of the establishment of personal assistance services by the German Umbrella Organization on Independent Living - ISL e.V (9) which had been created and operated by disabled persons four competencies of the recipients have been identified which determine whether self-determination is appropriate or not. This does not mean that all characteristics have to be met 100%. This would often be impossible. But if they are missing altogether self-determination even in particular areas is simply not involved.
These are in particular:
According to so-called the quality assurance standards(10) the management of service provider and not the recipient has to determine the schedule of care giving "according to the needs of the recipients".
Only service organizations or individuals who have made a contract with the health insurance funds can provide the care. Which persons for these services or individuals are assigned is decided by them and not by the recipients. The recipient has a choice among service providers and can at least sometimes choose the assistant.
This is not the intention of the present guidelines. On the contrary reading the federal suggestions for the contracts with attendant care services(11) (outpatient) shows that they are characterized by the determination of outside persons. An example: "balanced nutrition is to be strived for when planning meals or assisting with eating. The recipient has to be advised concerning the choice of food and drink". The person needing help with eating and drinking has to engage in a discussion about what is being eaten. Or: "dressing and undressing includes the choice of clothes together with the recipient". Self-determination which should be self-evident is not planned. Another example: "sleeping patterns, need for rest and possible malfunctions are to be taken under consideration for help with getting up and going to bed". This can only mean that the timing of getting up an going to bed is determined by the organization according to the service schedule. The needs of the recipients are only to be "considered".
This is different for SGB XI. The insured person is entitled to submit a claim for provision of services to the health insurance fund which as a rule will be assigned to the contract services. Payment for these services is made through an agreement between the service provider and the health insurance fund without participation of the recipient This means that the insured person has no way of reducing the payment in case of poor performance. The problems of service provisions which plague the health insurance funds will also apply to SGB Xl. I will come back to this issue in another context.
Anyone who needs or will need assistance cannot demand self-determination but is at the mercy of care service providers and health insurance funds. That is the message of the regulations for implementations. Small wonder that many recipients consider SGB Xl as a threat. Many have gained considerable self-determination in spite of dependence on outside care through lengthy struggles with the social bureaucracies. Everyday we experience anew realizations of the warnings we made while the legislation was being written. While politicians boast that "everything will be better after the introduction of the "long-term care insurance" most recipients have to struggle every day just to maintain standards for which they have already fought.
The most blatant example is the fight of the Ministry of Labor against the "employer model" which degenerated into an almost religious fight. Assistant Secretary Karl Jung described this particular type of personal assistance in his written report on current issues of SGB Xl in May 30, 1995 for the Committee on Labor and Social Order(12) of the lower house of Parliament in the following way:
"Disabled individuals who need assistance by third persons but who reject for reasons of self-determination care provided by attendant care services (outpatient) or similar institutions, act as employers of several persons who perform the necessary services as personal assistants. To avoid disadvantages which in the opinion of disabled individuals are inherent in institutionalized services (such as limited time for service by conscience objectors, expectations of gratitude etc.), they reimburse attendants with gross hourly wages and make sure that income taxes and social contributions are being paid regularly. The disabled person functions as employer, assumes personal financial and organisational responsibility and provides his/her instructions governing this employer relationship."
According to the federal Ministry of Labor this type of personal assistance cannot be financed through SGB XI provisions. These can only be performed by services under contracts which the employer model eschews. Neither authorizing the disabled employer providing the service themselves nor a contractual relationship between the health insurance fund and the personal assistants is to be possible. This means that with the implementation of the SGB XI the model of personal assistance which provides the greatest measure of self-determination is to be discontinued. This in spite of the fact that as a rule personal assistance is cheaper than the attendant care services through an organization because the disabled person shoulders the administration which has to be paid for services reimbursed by health insurance funds.
Most of the disabled employers are those with the highest claims for assistance which are not totally covered by the health insurance funds. Social welfare authorities have to provide supplements in most cases. In the past those have accepted the employer model within the framework of par. 69, section 2 of the BSHG (13) a.F.. We have tried for months to rescue the employer model either through interpreting the law in a way which would allow employing personal assistants by the disabled individuals or through a change in the law. Shortly after the election of the lower house of Parliament the Green Party submitted draft legislation which would have corrected the law regarding this issue aside from other matters. The coalition partners in Parliament just as the Social Democratic Party signalled rejection of the draft legislation after the first hearing. Willingness to correct a law so quickly after it had passed was very low. The recipients of assistance and our representation of the German umbrella organization on Independent Living - ISL e.V. had to invest considerable energy and arguments to arouse a certain willingness on all levels of the coalition to rescue the employer model through a legal clarification. At least that was our impression on listening to the Committee on Labor and Social Welfare of the lower house of Parliament Sept. 20, 1995 in Bonn.
But today we have to admit that we were wrong. The coalition partners and the Social Democrats together passed a change of SGB Xl legislation which does not correct the exclusion of the employer model favored by the Ministry of Labor but on the contrary prescribes it. The law explicitly states that the care provider must not be employed by the care recipient. The disabled employers are instructed to claim financing by the much lower care reimbursement. The federal social security income legislation (BSHG) states that the social welfare offices cannot direct care recipients who arrange the assistance by personal assistants they employ to claim reimbursement according to SGB Xl. Disabled employers become thereby second class care recipients. To achieve that lawmakers did not hesitate to pervert the system. The reimbursement money (14) for care is not to be considered as compensation for employed care givers but the disabled employers are to use it for that. Social welfare as second payer was simply ignored to ensure the exclusion of the employer model from the SGB Xl.
During the entire disagreement above all with the federal Ministry of Labor I have asked myself what the reason was for the tough fight of the Ministry of Labor against the employer model which by now is also supported by the coalition partners. There is no factual argument which could be brought forward. At a time when economizing is allegedly imperative on all levels the cheaper solution compared with attendant care services is being contested. Gradually I became convinced that the real reason for the fight of the federal Ministry of Labor against the employer model has been the fight against self-determination of disabled people. It is simply an attempt to once and for all do away with the right to self-determination of disabled persons and to assume control over the shape of their lives in important areas.
There is another aspect. The federal Ministry of Labor has offered the most important opposition to the inclusion of an anti-discrimination passage in the new constitution of Germany. But we prevailed in this area and the federal Ministry of Labor suffered a political defeat. Obviously the Ministry of Labor wants to reestablish its supremacy in disability politics through the resistance against the employer model. A policy of outside control over the recipients is to be established at all costs even if this outside control costs additional money. At the same time it is a demonstration that our success with the constitution means nothing concerning everyday life, that those who determine official disability policy can ignore it.
That which I have always called the "management mentality" (15) towards disabled people is to prevail. What is at stake is not self-determined living of the recipients but some sort of care, if possible segregated from the rest of society, organization of the disability problem and management of each disabled persons. We are being managed by society. This attitude has been confirmed and supported by the SGB XI in some way.
I have pointed out which you probably all know that the SGB Xl offers only partial security in case of need of care. This is not so bad. One can consider it right or wrong to make only part of the need for care reimburseable depending on income. This is a political decision influenced by various considerations and variable according to different perspectives. One could say in case of need for care by X a certain part is being covered regardless of income by the SGB XI while in case of indigence social welfare supplements it. This would be a clear regulation which could be implemented. In the 80ties a draft legislation of Rhine Palatinate which at that time was governed by the CUD (16) provided that half of each personals need for care would be covered by a funding provision financed by taxes and the other half by social welfare.
But such a clear demarkation is not provided by the SGB XI. It obfuscates more than it clarifies. Fancy brochures on the SGB XI pretended that the additional costs of care would be totally covered. Even today many care recipients are surprised when they comprehend that the SGB Xl is only a partial insurance. The myth of at last an almost complete insurance is being purposefully disseminated. One official involved in the formulation of the law writes seriously in the federal gazette: "97% of all care receivers at home will not need social welfare contributions". This was wrong, is wrong and will be wrong for some time to come. According to realistic estimates about 70% of care recipients will have to claim assistance from social welfare. But truthfulness of arguments have not mattered during the debate on SGB XI.
The feeling of threat posed by the SGB Xl among recipients is fostered by the fact that their individuality is neither considered when their need for care is assessed nor in the performance of care. During the previous social assistance system consideration was given to need for help during all phases of daily life. Now assistance is provided only for activities determined by the law. Nothing else matters. Need for care is standardized by criteria which cannot be influenced or judged by the individual. The definition is medically oriented. Basic care is the main goal supplemented by some homemaking assistance. Any endeavour of holistic care, participation in the life of society, social integration is totally ignored. Even treatment which health insurance funds provide rather poorly is not included. The slogan "fed and clean" describes succinctly what care is provided. Need for care is being reduced to the primary needs for sustenance and body hygiene. Nothing else matters.
All care recipients inspite of very different life situations are shoved into three levels of care. The third level is cynically described as "care around the clock" though a real around the clock care is totally impossible. Even in these cases there is no individual assessment of the concrete life situation but a classification according to schematic criteria which are totally random. I remind you of the controversy on guidelines for need of care among the health insurance funds and the federal Ministry of Labor. While the health insurance funds wanted to assign care level I for a daily need of one hour care the federal Ministry of Labor insisted on one and a half hour care. Not because of rational aspects but to exclude as many people in need of care as possible from the SGB Xl insurance. Fiscal considerations and a dogmatically defended stability of contributions decide the personal fate. I only want to mention that this schematizing and standardizing was enforced by political powers who in other contexts fight against homogenizing and for individuality. Credibility and keeping faith with principles is a matter of luck.
Disregard for individuality shows in the way care is provided. The law does not specify the scope, the concrete activity and by whom assistance is to be provided. It merely states that the reimbursement assigned to each level of care must not be exceeded. The lawmaker is not concerned about the need of the care recipient, nor provision of certain assistance, nor assurance of standards of care but only about the costs and their limitations. Within the given financial framework it remains up to the health insurance funds and the care providers to determine according to agreement on reimbursement what kind of assistance the care recipient can expect within the funding determined by law. According to the agreements which have been made in most states the attendant care services do not consider individuality in the provision of services. They follow the model of the health insurance funds which have always used the yardstick of so-called service units (17). The services are not being reimbursed according to the actual time needed for care but they are reimbursed according to the time allotted for the so-called performance schedules. As an example: I take the agreement in Hesse since I know it well. But most other states have comparable regulations. So-called performance schedules have been established which allot points in such a way that ten points equal 1 minute. These points are then multiplied with an hourly rate of DM 51.00 for basic care and DM 28.00 for domestic assistance.
As an example: the performance unit 3 (limited care) includes assistance for getting out of bed, dressing, partial washing, cleaning of mouth, teeth and combing. 300 points are allotted for this which means half an hour. The care service is reimbursed with DM 22.50. This allotment is applied regardless how much time the service actually took. Assistance 6 (for bowel movement) includes help with incontinence, taking to the toilet, transfer from the toilet, disposal of excreta and intimate care. 150 points are allotted for that which means 1 quarter hour to be reimbursed by DM 12.75. As you see schematizing prevails and is perfected. Up to now the law included the possibility to adjust reimbursement to the time spent. This is being changed by the new formulation which determines that reimbursement has to be matched with "performance schedules (18).
Care by the minute which we have always opposed has become a principle. Attendant care services have to strive for the quickest possible care provision since their employees are paid by the hour. If care provision takes less time than legally allotted they are economically better than in case of exceeding. Of course this has an impact on the way care is provided. It is quicker to do all these activities for the recipient than to support or guide self-help. Trained personnel can prepare a meal much quicker than to work according to the directions of the recipient. Cognitively deficient or old, confused persons can be dressed and washed much quicker than to give them directions to do it themselves. All that confirms an image of people needing care as passive objects of their care givers lacking any initiative. Even if care recipients want to adapt to this situation considering the care by the minute as inevitable and trying to arrange their real life within the periods in between, it does not help much. Because in periods free of care, they get no help from SGB XI and are left to themselves or supplementary social aid.
It is cynical to determine mobility assistance as leaving or reentering the apartment. If the care recipients take this seriously and actually leave their apartment, they are left alone since assistance outside the apartment is not provided. Performance schedule 11 in Hesse (assistance in leaving and reentering the apartment) consists of help with dressing and undressing connected with leaving and reentering the apartment and allots 100 points which means 10 minutes reimbursable by DM 8.50. Then when help would be very important for most who can help themselves possibly within the apartment, there is no assistance. Daily life is reduced to life within the four walls of the apartment. The claim for independence is met by assigning everybody his/her own ghetto. That illustrates the human image the lawmakers had in mind and documented in the SGB Xl.
The reduction of people to administratively manageable, machine readable, standardizedly assessed need for care cases shows a frightingly technocratic and inhuman way of thinking which makes many care recipients justifiably fear the worst. What has always been something to avoid by a social-legal guarantee for care namely the reduction of people to a "case for care" has been perfected by the SGB XI. Not the individual need of the person but the bureaucratic manageability are the guiding motif of all regulation for implementation. Once more people are defined by their medical impairment and helplessness in an arbitrarily delineated part of their lives.
This is especially dangerous at a time of increasing loss of solidarity, at a time when even enlightened and liberally minded persons participate in a new discussion on "unworthiness of life". From time to time people think anew in this country whether killing euphemistically called "euthanasia" should be allowed or even made mandatory for certain - or better undefined - manifestations or degrees of disability. I do not want to get into the details of the euthanasia debate. But one aspect seems important to me and characteristic. Nobody propagates openly the killing of people. But time and again the attempt is being made - as it was during the ghastly times of German history - to define the victims as not belonging to humanity to make them into non-humans. Who is to be killed must not remain human since the social threshold of the inhibition not to kill is simply too high. The individual must be portrayed as a non-human being, a carrier of certain characteristics which separate him/her from humanity. He is being described as a lifeless shell, a cretin, an un-person, already dead or unworthy to live whose killing is not a forbidden crime but a deliverance. Such an image of a depersonalized human being emerges from the SGB Xl. It does not look at the complexity of human beings but reduces them to arbitrarily described characteristics. Just because the experience with the renewed euthanasia debate it becomes very threatening that such a legally approved reduction of human beings exists namely the need for care which is totally passively defined, bureaucratically handled and constrained by fiscal considerations.
I do not want to close my presentation without referring to a more positive outlook for the future. After the experiences of the last few months I am sure that the care recipients learn to handle the SGB XI from the viewpoint of their interests. I remind you of the beginning of the federal social assistance legislation (19).The assistance for care was characterized by pronounced paternalism and a very restrictive start. But many care recipients succeeded with their fight for a self-determined life built around these regulations. The same has to be done with the SGB XI. Many will be able to create niches for self-determination with innovations and patience. We will oppose the abstract human image manifested by the SGB XI with our own perspectives of care and enforce it in practical implementation. It is not going to be simple. It demands stamina and originality in handling the new law. I am sure that together we will achieve something. We cannot allow ourselves to be robbed of our claim for self-determination by the decisions of a few hundred men and women in Bonn, a few bureaucrats in the health insurance funds and organizations. The nightmare of SGB Xl must fade away. We must be alert and act in solidarity.
by Dr. Andreas Jürgens
Translated by Dr. Helga Roth
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