Abolish Institutions 

"A particular problem for all involved is the transition of autistic people from parental care to another care system or to independence. Only relatively few autistic people can live independently or alone with outpatient care. Around 75% no longer live with their families but in various institutions. They are usually placed there during adolescence or early adulthood. Adult autistic people, if not with their parents, live in homes for the mentally disabled, in socio-therapeutic residential communities, or in socio-therapeutically or anthroposophically oriented village communities. The capacity of these facilities varies greatly." 

writes Autismus Deutschland and recommends: 

• "Since only few autistic people become independent enough to live alone, residential communities and homes must be created for them. This is particularly urgent because of the large discrepancy between the number of autistic adults and the housing options specifically set up for them. Supported residential communities or groups offer good conditions for integration into the neighborhood. The founding of such communities should be urgently promoted.

• Autistic adults should preferably be admitted to facilities (e.g., homes or residential communities) that are specifically familiar with the issues of autism or provide the prerequisites for adequate, long-term care.

• Homes offer the best chances for integration if they are as small as possible and ensure personnel continuity. Qualified and sufficient staff, supervision, and possibilities for crisis intervention are also necessary. Independent living for individuals should also be made possible through accompanying assistance."

Autistic people, therefore, belong in homes or in the care of other facilities; alternatives seemingly do not exist. And some Aspies believe that some (other!) autistics belong in homes and consider it "brainless" and "radical" to want to abolish institutions.

"I am Huw Ross. I cannot speak well because I have autism. Please listen carefully. I represent People First Germany. Especially the people who need a lot of help, like me. People who cannot speak or who cannot move. You rarely see these people on the street because they often live together in large institutions. Because they are not seen, most people think that a home is the right and natural place for them. People First sees it differently. So does the law. People who do not want to live in an institution must be allowed to live on their own. Even if they need more help. That is also what the law says." — Huw Ross, People First

Welfare organizations regularly emphasize that disabled people not only need their placement in a home but also desire it.

"and everything a welfare organization says is accepted by the public far more unquestioningly than, for example, the same statement from a government agency. If, for instance, one has the choice between an insecure, unsupported, deteriorating, and unsatisfactory situation at home and a secure, established, and permanent institution, who is surprised that in their desperation they choose the latter? That welfare institutions then say this is proof of the value of institutions is an extremely misguided interpretation, which disabled people bitterly oppose when it is used to gain further support from a public that is easily misled." — VIF, Disabling Help or Self-Determination of the Disabled

Home management seems to recognize this perfectly – as their websites and brochures are aimed at parents, guardians, and other relatives – and not at the people who are to be housed there. An example:

"For most parents, at the latest when their autistic child enters adulthood, the anxious question arises: 'Where can my child live according to their disability? Where can we find people who can handle their frequently occurring anxieties, compulsions, stereotypies, and aggressions?' For what the parents have laboriously attempted for years, namely to create appropriate living conditions for their autistic child, overwhelms homes and workshops if they are not conceptually prepared for the specific problems of autism symptoms. Thus, many parents looking for a home placement for their severely disturbed child will likely find the doors closed if they truthfully disclose the extent of their child's autistic behaviors." — Home "Weidenhof"

"Families with mentally disabled relatives experience social stress and discrimination. Placement in homes and institutions can relieve the family to the extent that the problem moves somewhat out of sight – for the family in question as well as for the society in which they live – but not for those affected. Individual cases in which mentally disabled people endanger themselves or others serve as an alibi for the necessity of secure custody for countless others." — Wolfgang Urban: Outpatient assistance for independent living for mentally disabled adults

• "There was no vegetarian food for the residents. As far as I know, I was the only one who managed to insist on it. However, this dragged on for years, while providing for vegetarians among the staff was and remained a matter of course."

• "When my electric wheelchair was broken and I had to be picked up, I was threatened that next time I would not be transported back to the Antoniushaus. This meant I was supposed to be trapped on the house grounds and give up all vital activities and contacts, even though 'life' in the EWB had already made me severely depressed."

• "To attend a job interview, I was dependent on the facility's own bus. The travel time was set by the EWB in such a way that I stood in the cold for two hours. It was, of course, well known that my disability could irreversibly worsen as a result. Other appointments of mine were handled similarly."

• "One of my friends chose to end his own life because he could no longer stand his life there and no more perspectives could be identified or were negated. He never got to know life outside of institutions. […]"

• "When I moved out, I experienced many harassments. The subsidies for furnishing the apartment – like all my money – first went to the EWB and were then paid out to me at their discretion. I always received only small sums, so that many trips became necessary, while at the same time there were hardly any staff or possibilities to furnish the apartment. Furthermore, the sums were not enough for truly large purchases."

"Today I am looking for a new apartment with my boyfriend; it is to be our shared one! We have been together for over four years and we lead a life that would not even have been conceivable in the institution. Especially since the facility was run by a conservative Catholic institution, with all the known hostilities, e.g., towards gay people. The people in the institution (we remember, so-called 'homes' or 'facilities') were repeatedly given false information about life outside or suggested a guilty conscience when they demanded everyday life. Clever (and very dominant) advice came from employees who were not competent themselves but wanted to exercise control. After all, we learned in the brochure: the EWB supports independence." — Manfred Keitel, Mainz

A resident of a home wrote a 10-page letter about his life in the home to Mensch zuerst – Netzwerk People First Deutschland e.V. Mensch zuerst published excerpts from this letter. In it, for example, one could read:

• "So-called caregivers make sure that you don't spread too much on your bread."

• "If someone ever expresses something against the staff or holds an opinion, they always say here: 'Be nice!'"

• "You are under observation here 24 hours a day and everything is entered into the computer."

"An institution means the segregation of people who do not correspond to the average norm, i.e., who are different: of people who do not provide the normal level of performance and are therefore rejected and pushed aside; thus, of people who differ from the general public in some way, e.g., by looking different, behaving conspicuously, or not being sufficiently productive. They are punished for their difference and put behind institutional walls. The punishment consists of taking away their self-determination, i.e., they are isolated, deprived of their rights (which we take for granted), and prevented from determining their own way of life. All decisions concerning them are made by others. Professionals (therapists and medicine men, etc.) play a special role in this. They argue about which of them knows best which treatment can best help the institutional residents who have been labeled as objects. The result of these living conditions is severe effects of institutionalization: e.g., dependency, low self-esteem, lethargy, aggression." — Kühn, Dissolve the Institutions!

This paragraph makes it clear that the institutional system itself is the problem—structures inherent to it. It is not about a division into "good" and "bad" homes. Personal experience reports also show that the problem cannot be solved this way:

"When I had my accident in 1976 at the age of 20, resulting in paraplegia—which led to a 24-hour need for help—I was sent to a home for people with physical disabilities immediately after medical rehabilitation. At that time, there seemed to be only the alternative between care in the family or a stationary facility. Although I was placed in a 'good' facility, life with its externally determined structures there quickly became unbearable for me. I could not decide who washed and dressed me; I could not determine when I got up or when and what I ate. I could not travel away; I could no longer dispose of my financial resources. Decisions concerning me and my life were made for the largest and, above all, the most existential part by people strange to me. It ultimately took five years until I managed to fight my way out of the facility and move into my own house. I would never go back to an institution. A life there is not worth living for me." — Elke Bartz

Many institutions advertise using the term "self-determination" – that is like nuclear power plants advertising environmental protection. How mocking and cynical must that seem to the residents?

"The parents, as legal guardians, take an active part in what happens at Weidenhof. They elect the home care spokespersons from among themselves as representatives for the home advisory board, which cannot be formed by the residents themselves." — Home “Weidenhof”

Prof. Klaus Dörner also points out this contradiction:

"As long as our image of humanity is still shaped by the institutional paradigm, we will generally grant those in need of care and the disabled self-determination as their highest basic need, precisely because this has fairly few consequences there, since self-determination is largely impossible within the institution." — Towards a Homeless Society

"I knew I had to react before it was too late: because placement in a nursing home was and is never an option for me. That would mean giving up my life. I decided on Personal Assistance and can now lead a self-determined life according to my own ideas. Here, 'self-determination' is to be understood in the truest sense of the word. With the help of assistance, I can manage my personal affairs myself and keep my own appointments; I can decide which staff I hire; I can decide what I wear, eat, and where I go." — Isolde Hauschild

The institutionalization of disabled people has a 150-year tradition. As a result, many people today consider homes for the disabled as something natural and necessary. In contrast, the counter-movement for a right to a self-determined life for everyone is only a few decades young.

"Since the 1960s, so-called Independent Living Centers have been emerging in the USA, and there is now a dense network of them. They are primarily run by people with physical and sensory disabilities. The goal of the Independent Living Movement is to enable disabled people to lead a self-determined life, especially regarding housing. To this end, the IL Centers offer a wide range of interconnected services, such as peer counseling, legal assistance, transportation services, independence training, referral of assistants, healthcare, housing placement, wheelchair repair, and more." — VIF, ibid.

"In their work, they concentrated on building a pool of helpers and creating a list of accessible apartments, in order to give every disabled student the freedom of choice to decide how and where they wanted to live in the community." — Laurie 1982, in; Theunissen, ibid.

In 1979, the Centers for Independent Living in the USA were recognized by federal law and have been co-funded by the state ever since.

"The dignity of risk is what the IL movement is all about. Without the possibility of failure, it is said, disabled people lack true autonomy and the sign of true humanity—the right to decide for better or for worse." — VIF, ibid.

In Germany, a parallel movement has existed since the late 1960s. Maintaining a critical distance from the disability work of traditional welfare organizations and some parent self-help groups, people with physical, visual, and multiple disabilities united in a "Cripple Movement" (Krüppelbewegung) against discrimination, disadvantage, and placement in nursing homes, disability institutions, or psychiatric wards.

"In 1981, during the official 'Year of Disabled Persons,' when traditional welfare associations and aid organizations engaged in 'extensive self-praise and patting themselves on the back' (...) and attempted to demonstrate their paternalistically preformed power toward those affected, activists and sympathizers of the Cripple Movement organized a 'Cripple Tribunal' in Dortmund as a counterpoint to the ideology and self-interest of the ruling associations. At this tribunal, massive human rights violations such as deprivation of liberty, forced treatments, forced medication, or forced sterilization were denounced and addressed. The critique of the medicalization, discrimination, and institutionalization of disabled people continued in 1982 at an international specialist congress in Munich, where those affected and experts from the USA, the Netherlands, and Scandinavian countries impressed with concepts of the Independent Living movement and possibilities for realizing community-integrated living for (severely) disabled people." — Theunissen, The Independent Living Movement

In Sweden, for example, homes for the disabled have been abolished and legally prohibited. These examples from other countries encouraged self-help organizations of disabled people in Germany to promote deinstitutionalization and the establishment of centers for independent living as well as outpatient services. Living in one's own apartment is not only a long-standing goal of the disability movement; all relevant laws since the Federal Social Assistance Act of 1961 have prescribed the principle of "outpatient before inpatient." Parallel to the homes that continued and still exist today, "outpatient supported living" became established. Most rehabilitation providers provide these participation services as benefits in kind.

"Disabled and elderly people should, like all other people, be able to live in their own homes and in their familiar surroundings for as long as possible. To realize the legally standardized right to choose and to have one's wishes respected, they must receive the necessary support." — Federal Initiative "At Home Instead of in an Institution"

To achieve this goal, the federal initiative demands:

• A construction freeze on new institutions;

• The reduction of existing institutional placements;

• The nationwide expansion and establishment of networked support services that cover individual needs for elderly and disabled people;

• A guarantee of the right to choose for those affected, including through personal budgets;

• The assurance of the principle "At Home Instead of in an Institution" in all legal and administrative regulations at all levels and in practice;

• The participation of those affected in the reform process according to the motto "Nothing about us without us."

The list of supporters is now very long. Members of the Bundestag, disability advocacy groups like ForseA e.V. and Mensch zuerst – Netzwerk People First Deutschland e.V., BAG Behinderung und Studium e.V. and Selbstbestimmt Leben e.V., the Social Association of Germany (SoVD)... just to name a few. Autismus Deutschland e.V.? Nowhere to be found. Aspies e.V.? Unfortunately, not either. No autism organization could be found on the list of supporters.

"No chronically mentally ill person and no difficult mentally disabled person must live permanently in an institution. This sounds like a provocation and like a fantasy – but it is the professional international standard. Germany is lagging behind in this process, while in England, for example, half of the institutions have already been dissolved. In the Federal Republic, 70 percent of the chronically mentally ill and 50 percent of the mentally disabled could be discharged immediately from a professional point of view. One must even sharpen the point: they must be discharged because they cope just as well or better with outpatient care – for the remaining 30 percent, it would take a bit longer, but in principle, there is no chronically mentally or mentally disabled person who must live permanently in an institution. This is not only professionally required but mandatory under the aspect of humanity and human dignity, and finally, it requires less than half the costs." — Dörner, We must abolish the institutions – and finally take the 'inmates' seriously in their human dignity.

Prof. Dörner describes in several articles the dissolution of the Gütersloh State Psychiatric Hospital, of which he was the director for a long time. Today, all (!) former residents are supported on an outpatient basis or no longer require this form of support.

"From 1981 to 1996, all 435 long-term patients of this psychiatric institution were discharged, 70 to 80 percent of them into outpatient care, into apartments, residential communities, or back to their own families. This also applies to the 70 mentally disabled people who had only come to the hospital because of their particular difficulties. We have since visited and carefully followed up on all of them... Virtually no one wants to go back, almost everyone feels significantly better, there are no increased suicides and no drifting into homelessness. It is part of the required professionalism that no employee lost their job in the process and that we now manage with less than half the costs." — Dörner, ibid.

In other countries, e.g., Sweden, there have been no institutions for disabled people for a long time.

"But also the way in which one gets assistance is also different. There is nothing, absolutely nothing special about institutions that would enable them to offer assistance that no one else can offer. In fact, the quality of assistance in institutions even tends to be lower than the quality of the same support outside of institutions. And much of what they offer is not assistance at all, but a kind of anti-assistance that should be given to no one. To say that there is a type of person who fundamentally belongs in institutions is wrong." — Ballastexistenz, This twenty-four-hour support thing.

Another experience in Gütersloh, by the way, was that a few years after the dissolution of the institution, an application to operate a home for the disabled was submitted to the responsible office. Problem: the office must approve the application if there are fewer than a certain number of institutional places per number of inhabitants. The fact that people were being cared for on an outpatient basis was known to the applicants – but an institution creates jobs and generates profit, and therefore the need is simply created – at the expense of the (future) residents – against their human dignity, against the constitution (placement in an institution without necessity, without informing about alternatives, is deprivation of liberty and restriction of personal rights, cf. Dörner).

"I and every one of us still have a long and hard road of self-improvement ahead until we grant acutely ill, chronically ill, disabled people, and especially residents of institutions—whom we tend to perceive only as a gray mass—equal appreciation and equal rights; that is, until we behave in accordance with the constitution. I ask you to view this handicap of ours, from which we all suffer due to our 150-year tradition of institutionalizing disabled people, as the shadow that lies over everything I have (...) to tell you." — Dörner, Towards a Homeless Society

A book on the Personal Budget: Person-Centered Support and Quality of Life. Participation with a Personal Budget by Elisabeth Wacker, Gudrun Wansing, and Markus Schäfers.