A Society Without Institutions
With independent living means that one lives either with one's own family, by oneself or with a small group of people in an ordinary flat or house.
The term institution refers to one or more houses that are separated from their surroundings. In an institution many people live together. They are divided into different units. All special services, such as for example training facilities, and daily activities are a part of the institution.
In Sweden, the institutions belong to the past. Society used to separate people with different disabilities from the rest of the community and place them in institutions. By this, their freedom, influence and life conditions were limited.
With 8 million inhabitants we had as most 40 boarding schools, 40 residential homes for children, 120 residential homes for adults and 6 special hospitals.
Today we know and can prove that no person with disabilities needs to live in an institution. This includes even the most disabled people. And more importantly: To live in the open society leads to independence and personal development also for those.
That same year the parliament decided to lend money so that group homes could be built. These loans were given on the condition that each person was given his or her own flat with a small kitchen and a bathroom within the group home.
This decision was very important. At last, people with disabilities were given the chance to live like ordinary citizens!
Since the the year 2000 all institutions for people with intellectual disabilities in my country have been closed. The same is the situation in Norway. As a result, destructive behavioural patterns have become less common and sometimes even disappeared. Prejudices have been torn down. The solidarity with people with intellectual disabilities has been strengthened. The humanitarian forces in society have become stronger.
Situation Today for Children
In Sweden 94 percent of all children and youth with intellectual disabilities live with their parents. Five percent live in small group homes and one percent lives in another family.
All of them go to regular pre-school, to a school for children ages 7 - 16 or to a school for youth. Most of the intellectually disabled children are taught in special classes within these regular schools.
As a result, we have today a whole new generation of disabled children and youth who are more emotionally mature and socially aware. We also have a new generation of parents, who know their children's needs and the obligations of society.
The Situation for Adults
Today 57 percent of all adults with intellectual disabilities live in group homes, 23 percent live on their own and 20 percent live with their parents.
If a person cannot live independently, he or she has the right to live in a group home. The group has to be small. This way it is easier to communicate and to get friends in the group. It also makes it easier to become included in society. The best number of persons living together is around four. Research shows that initiatives, communication and self-determination are more common in a small group than in bigger groups of six or more members. In small groups there are fewer routines and less controlling attitudes by the staff. Naturally the group should include both men and women.
Each adult person living in a group home has a personal budget and control over his or her own income. A person's income consists of a pension that covers living costs and a state subsidy of the rent.
The expenses a person may have usually consist of the rent and costs for food, clothes and so on. Each person decides what food he or she wants to buy and eat.
Each person at a group home has his or her own flat with a small kitchen and a personal bathroom. The area of the flats varies in between 30 to 40 sqm. Loans for building group homes are the same as for all other buildings. This gave the intellectual disabled to live lika other citizens.
An alternative type of housing consists of a number of flats situated in the neighbourhood. One flat is set aside for the staff and as a meeting place for the residents.
Every year people with intellectual disabilities move from group homes to such a flat nearby. They have developed social skills that make them able to live on their own.
Daily activities in the community is a must for those living in group homes, as for those living with their parents or alone. The daily activities have become more varied than they were before. Earlier, these activities took place in special day centres. Today, individuals or small groups of people more often take part in ordinary service activities, such as serving lunch at the police station.
The problem of loneliness, that many feared would occur when people moved from institutions to their own homes, never came true. However, it is necessary that the staff encourages and supports the individual in choosing activities, participating in courses and so on. Otherwise he or she can become isolated.
As it turns out, many people with intellectual disabilities possess great skills in making new friends and acquaintances. It is striking, the way they are able to, and enjoy, rambling in the community. Many of them belong to different organisations or clubs.
Reactions By Those Involved
The closing of institutions and boarding schools for children was done without any protests from parents. But 50-80 percent of the parents to adults were against the closing of their institutions. They were afraid of the negative attitudes their adult sons or daughters might encounter. They also feared their adult children would not be able to handle traffic, that they would be lonely, that their new homes would not have enough staff and so on. None of these things have occurred! In follow-up studies the number of satisfied relatives is around 80 percent.
Studies have shown that the care given to those living in group homes is more focused on the individual than it was in the institutions. The people who live in group homes feel safer and need less medication. Aggressive and self-destructive behaviour has become unusual.
Those persons who have the most severe disabilities improve the most, when they move from the institutions to group homes. They can communicate better, they understand more and they interact with the environment to an extent no one could predict.
In the group homes, the staff has more influence over their work than they had at the institutions. They have less set routines and more freedom to take their own initiatives. However, they are also given less training and supervision than they had previously received at the institutions. This is a problem that has to and can be prevented.
Another problem that we did not expect is that the personnel in the general medical services do not have enough experience in taking care of the medical needs of intellectually disabled adults. They must have access to back-up, especially from psychiatrists.
Some More Service Activities
I will give some examples of service activities that are absolutely necessary when intellectually disabled people move to group homes or their own flats as for those living by parents:
The base for inclusive living is long time counseling for the parents, for the disabled person and for the staff. Experts from different disciplines have to work together in different teams for children and adults. The teams for young children are more medically oriented than those for older children and adults. There is so much knowledge and so many experts that it can sometimes be dangerous if a single expert makes decisions without the cooperation of others. Especially the social and psychological needs of the person can be neglected unless the different experts work together.
In order to prevent the disabled person from feeling isolated he or she should be given support from contact persons and companion services. Together with a contact person, the disabled individual can take part in cultural activities and meet friends. Preferably, these persons should work on a voluntary basis, but they are paid for their expenses.
”Relief services” in the home give parents a chance to do things on their own outside the home. Many parents have this service for several hours each week. An alternative to this could be that the child is taken care of in the home of the person performing the relief service.
Short-term stays in a special group home or in another family are meant to give parents some relief from the daily care of their child, but also for recreation of the disabled person. These stays can range from a weekend every other week, to a week each month together with a month each summer.
A system with user support in the home of the disabled person, as so-called personal assistant, is an alternative to living in a group home. On the average, the individual is helped by such personal assistants for 40 hours every week.
It is important to say that no support should be given without discussing it with the disabled person who will receive the help. It is also important that the wishes of this person are respected. The right to control one's own life is important for personal development. In all daily routines and service interventions the disabled person's own wishes must be listened to and respected.
All persons with disabilities can develop their abilities, even those with the most severe and multiple disabilities. How much they develop depends more on how the service is given than on their abilities.
Living in a group home or on one's own has no negative effects or consequences. In the long run it gives good results for the individual and it is more economically sound. As a result of the flexibility of the system, the number of intellectually disabled persons who need special service will go down.
The right to live in the open society is no longer a problem for the experts. We know how to do this. Now it is time that we, together with those who have intellectual disabilities and their relatives, convince the politicians of the advantages with community-based living.
S-131 50 Saltsjo-Duvnas