3 What are people entitled to?

In short

In this chapter, you will read about the rights that persons with intellectual disabilities have:

• Everyone has the right to manage their own life and to learn and work.
• Everyone has the right to live where they want and enjoy leisure activities.
• Not everyone has their rights respected.
• The government wants everyone to have their rights respected.

3.1 The right to manage your own life and health

Everyone has the right to decide over their own life. Everyone also has the right to know about their own health.

The right to get help to take part and to make decisions

Persons with intellectual disabilities often need help to live independently and to take part in the activities they like. In law, this help is known as personal assistance.

People can have right to personal assistance regardless of their living situation. Some may be entitled to user-controlled personal assistance (BPA - Brukerstyrt personlig assistanse). People who receive this assistance can decide when and how their help is provided.

Right to healthcare

According to the human rights, no one should be discriminated against when accessing healthcare. Everyone has the right to the healthcare they need, and the service should be close to their home. There should not be a separate system for persons with intellectual disabilities.

Persons with intellectual disabilities may require healthcare because of many reasons. The people who are helping them need to co-operate. Those giving help must know the person they are helping. The government wants to make this a reality.

The law states that everyone has the right to accept or reject healthcare if they

• understand what they are choosing between
• understand what the alternatives will mean for them

The law states that everyone has the right to say how they want the help to be given before they receive it. If someone needs a lot of help from different helpers over a long period of time, they have the right to receive a specific plan for this help. This is known as an individual plan.

The right to know about your own health

Everyone has the right to know about their own health, so that they can decide on what help they want.

Healthcare workers should show consideration when they speak to someone about their health. They should speak about it in a manner which

• is suitable to the age of the person they are talking to
• is easy to understand for the person they are talking to
• is suitable for how much the person they are talking to knows from before

Healthcare workers should speak about these things in a language that the person who is listening can understand.

Family members can be told about someone’s health if

• the person says it is OK
• the person needs help to decide for themselves

It is difficult to assess mental health

Everyone has mental health. The term refers to thoughts and feelings, and how you are doing. Persons with intellectual disabilities have illness related to thoughts and feelings (these are known as mental illnesses) more often than others. Examples of such illnesses are depression and anxiety.

It is often difficult to assess the mental health of persons with intellectual disabilities. Persons with intellectual disabilities can find it difficult to explain what they are thinking and feeling. It can also be difficult to understand why some things feel different than usual.

Why are the health services not good enough?

Persons with intellectual disabilities do not always get the help they need. The four most important reasons for this are:

1. Health services are not adapted for everyone.
2. The person getting help is not asked what they want.
3. The people working in the health services do not know enough.
4. The municipalities do not check whether the health services are good enough.

We will now examine these four reasons in more detail.

1. Health services are not adapted for everyone

Persons with intellectual disabilities require different amounts of help. They also need and want different types of help. However, many persons with intellectual disabilities often receive almost the same help. This means that the help is not suitable for everyone.

The government wants services to be suited for the person receiving them. This means that everyone should get the help they need and the help they want.

2. The person getting help is not asked what they want

Healthcare personnel often give too little information about the help they are providing. They also often share too little information about the health of the person receiving help. This makes it difficult for the person or the family members to find out what help they should say yes or no to.

Everyone is entitled to tell what sort of help they want. This can make the services better.

Personal assistance is help a person receives to daily activities. This gives the person the opportunity to take part in activities and work, and to manage their own life.

The government wants people receiving help to be part of the decision-making process. They also want people to know more about their own health.

3. The people working in the health services do not know enough

The people who help must know the person receiving help. Otherwise, they will not know what the person needs or wants.

The people working in the health services must have good knowledge about intellectual disabilities. They must also know how to collaborate with persons with intellectual disabilities.

The people who give services must know what the law says. They should also know how to find out what is right and wrong in difficult situations.

1 in 3 people working in the healthcare services do not have enough education to know what people with intellectual disabilities need. The government wants those giving help to receive training so that the services can be improved.

4. The municipalities do not check whether the health services are good enough

The municipalities can decide how they organise services for persons with intellectual disabilities. The people who are making decisions in the municipalities must ensure that the services are good enough. However, they do not control often enough. That makes it difficult to improve services that are not good enough.

The government wants the municipalities to have better systems in place to ensure that persons with intellectual disabilities have access to good services. The managers in the municipalities need to learn to be more attentive.

3.2 What does the government want to do?

The government wants that

• services are adapted to the person receiving them
• persons receiving help is part of the decision-making process, and that they know about their own health
• persons who are giving help get training, so that the services can be improved
• the municipalities have better systems, to ensure that persons with intellectual disabilities access good services

The government’s aim is that everyone should live an independent life. In addition, everyone should know that public authorities will look after them when they need help.

3.2.1 Coercive measures

The government believes that everyone should be able to decide for themselves. In addition, those who need help should receive what they need in order to decide for themselves. Sometimes, however, someone will need to decide for others so that they do not harm themselves, for example. This is known as coercive measures.

Coercive measures are a last resort

Those working in the services can use coercive measures against someone to prevent them from harming themselves or others. The law states that coercive measures can only be used when all other avenues have been tried first. Those deciding on coercive measures must, however, have the correct training in order to make this decision. In addition, this must have been decided with a court order. In addition, an administrative decision must be made.

Being able to decide more for oneself can make coercive measures unnecessary

Some people can harm themselves or others if they feel that they are not able to decide in their own lives. In these cases, the persons may need help to be able to decide more themselves. If someone regains the feeling of being able to choose and decide for themselves again, it can reduce the need for coercive measures.

To avoid coercive measures being used, the law states that there must be:

• skilled people on the job
• good managers
• good services that follow all laws

It is possible to appeal against coercive measures

It is possible to send an appeal if someone uses coercive measures. It is also possible to receive help in writing down what is being appealed against. Coercive measures are often used against persons with intellectual disabilities. However, persons with intellectual disabilities almost never raise an appeal.

Coercive measures are used more in some parts of the country than in others.

A new act on coercion and coercive measures

In 2016, the government commissioned a report to explain whether they should change the law about when the use of coercive measures is allowed. The report also explored what the UN CRPD had to say about coercive measures.

The report was published in 2019. It proposed a new law relating to the use of coercion in the health and care sector One of the most important proposals was that people should get to decide more for themselves. Diagnoses should not by themselves be a reason to use coercive measures. Coercive measures should only be used if the person really needs help but does not understand enough to accept or reject this help.

The report is called NOU 2019: 14 Limitation of the use of coercion act – Proposal for common rules on coercion and intervention without consent in health and care services. The body that proposed this was called the Coercion Act Commission.

3.3 Right to education

Everyone has the right to education. Everyone should have a good experience at school.

Everyone shall be included in kindergarten and school

All children and young people should experience that they belong together with others. They should feel included, and that they are worth something. No one should be excluded or discriminated against. Kindergartens and schools are responsible for everyone being included.

All children and pupils should be included in decisions on how they want to experience kindergarten and school. They should feel that they are being heard. They should also feel that they can influence things that affect them.

Pupils with intellectual disabilities may require extra help to be able to take part in the decision-making process. They have a right to this help.

Children should be prepared for adult life

One goal of the school is to prepare the pupils to take part in working life and society, so that they can live a good life when they become adults.

Another goal is to prepare the pupils to be involved in making decisions in society when they are adults. Some pupils can get extra help in school to achieve this.

Children who need extra help before they start school have the right to get this extra help. They have the right to extra help regardless of whether they go to kindergarten or not. This kind of help is known as special pedagogical help.

Everyone should have the opportunity to go to a local school

Everyone has the right to go to school in their neighbourhood. At school, persons with intellectual disabilities should go in the same class as the other pupils. They should receive the facilitation they need in order to be included.

The right to go to upper secondary school

Everyone who has finished at a lower secondary school has the right to start at an upper secondary school. It should be possible to apply on different educational programmes, and to say which one the person would prefer to attend.

A queue system has been created to decide where people can go to school. Those who are entitled to special education and facilitations are placed at the front of the queue. This is known as a preferential right.

Some schools do not provide pupils with what they are entitled to

Many kindergartens, schools and after-school programmes provide children with what they are entitled to. However, there are many that do not.

Many children must wait for a long time to receive the help they need. There are also many children that do not get to learn everything they need to know. Sometimes this is because the schools believe they cannot learn it. Many are able to learn if the school facilitates and gives them a chance to learn.

It is important to be included in the school environment

Many pupils get their special education outside of the classroom. This can make them feel excluded.

It is important that all pupils are included in the school environment and that they feel that they belong to a group.

3.3.1 What does the government want to do?

Increase the knowledge among the people working with children and pupils

The government wants to increase the knowledge among the people working in kindergartens, schools and educational and psychological counselling services. Kindergartens, schools, after-school programmes and others providing help should cooperate better.

Make it easier to transfer between schools

The government wants to find out whether it is possible to prepare better for pupils when they finish primary school and begin at lower secondary school. Also, when they finish lower secondary school and start at upper secondary school. It may be that schools can share information and talk more about pupils so that the new school is better prepared.

The government also wants to find out how lower secondary and upper secondary schools can work together better.

After-school programmes should include everyone

The government wants that pupils who need facilitations should get the same services as others at after-school programmes. The after-school programmes must include all children in the same way as schools have to.

More people should be able to recognise that children need help

The government wants to have more adults at kindergartens and schools. These adults shall be able to recognise when children need facilitation. Children should receive the help they need faster than today and should not have to seek it out. This is part of what is called early intervention at kindergartens and schools.

3.4 Right to work

Everyone who can and wants to work should be able to do so. Persons with intellectual disabilities may need facilitation and help at work. If people receive this, many more can be able to work.

Facilitation at work

Employers and others must take responsibility for giving more people the opportunity to work. People work in different ways. Persons with intellectual disabilities have the right to an assessment of their job opportunities.

For some, it will be most proper to work at a place where the entire workplace is adjusted. These workplaces are known as inclusive enterprises. These companies shall include people who cannot work elsewhere.

Proper facilitation is important to make it possible for more people to get into work. Facilitations must be better. Different services must also co-operate better.

Permanent work adjustment works for many people

Most persons with intellectual disabilities work through permanent work adjustment (VTA – varig tilrettelagt arbeid). Permanent work adjustment is found in most inclusive enterprises. However, it is also offered in ordinary enterprises. If everyone who wants VTA is to get a job, there is a need for many new VTA places.

The transition from school to work is important

Many persons with intellectual disabilities do not get a job when they finish school. It is important with good facilitation when someone has finished at school and wants to start working. If people are out of work for a long time after they finish school, it is more difficult to start a job later on.

Persons with disabilities are more often out of work

We do not know exactly how many persons with intellectual disabilities who have a job. However, we do know that persons with intellectual disabilities are more often out of work than others.

It is difficult to get a job when you do not have proof of what you have learned. Many people believe that persons with intellectual disabilities cannot do much. This belief can make it more difficult for people with intellectual disabilities to get a job.

Schools and families may also believe that the person cannot do much. A result of that can be that the person does not learn enough.

3.4.1 What does the government want to do?

Everyone should have the opportunity to work as much as they can

The government wants the whole society to help to facilitate so that everyone who wants to work, get the opportunity to work. The government also wants that more people get to learn new things when they are adults.

The government believes that it is important that people who receive disability benefits should have the opportunity to work at the same time. Everyone should feel included in society through participation in the labour market.

Research on how pre-employment training programmes function

The government wants to find out whether pre-employment training (AFT- arbeidsforberedende trening) is functioning properly. That is a service for those who need to work on a facilitated enterprise before they start work training in a regular business.

Find out how permanently adapted work can be better

The government wants to find out how permanently adapted work can function better. The government wants to evaluate whether receiving more assistance in VTA helps. The government want to assess this in some counties.

3.5 Right to live how you want

To decide how you want to live is an important part of deciding over your own life. In a good home, people are able to do more without help. It also gives more freedom.

When persons with intellectual disabilities become adults, they should be able to move away from their family and into a home they have chosen for themselves. The government wants everyone to live well and securely, and for more people to be able to own the home they live in. The government also wants a good rental market.

Most persons with intellectual disabilities live alone

Persons with intellectual disabilities want to live the same lives as others. They want to have a partner, family and maybe children.

However, most persons with intellectual disabilities live alone, and not with a partner. In contrast, 4 in 5 people who do not have intellectual disabilities live with someone.

It is difficult to move in together. It is also difficult to find someone to move in with. These are two of the reasons why most persons with intellectual disabilities live alone.

Persons with intellectual disabilities often do not have many close relations. In addition, many live in a shared house with many others. That makes it difficult to have a private life and find a partner.

It should be possible to live in ordinary homes

Persons with intellectual disabilities should be able to live in ordinary apartments or houses in regular residential areas. They should be able to live independently in these places, like everyone else.

Homes for persons with intellectual disabilities should not look like institutions. The people living there should be involved and participate in decisions.

There should not be too many homes for persons with intellectual disabilities in the same building. This can lead to those living there not being fully included in society.

The government’s goal for housing

The government wants everyone to live well and securely. They want

1. more people to be able to own their own home.
2. better residential environments.
3. more houses to be built.
4. new housing to be built in an environmentally-friendly manner.

Ability to apply for a start-up loan

The Norwegian State Housing Bank offers a product called a Start-up loan (Startlån). The Housing Bank loans money to municipalities, which in turn loan it out to people in financial hardship. People can use the loan to buy a home, or to get enough money to keep the home they are living in.

Almost all municipalities offer a start-up loan. However, start-up loans for persons with intellectual disabilities are not used by all municipalities.

In many places, persons with intellectual disabilities and their families have bought homes together with others. Sometimes, they have worked together to organise a housing co-operative with multiple homes for persons with intellectual disabilities.

This can be a good way for persons with intellectual disabilities to own their own home. However, this can also lead to those living there not being included in society.

3.5.1 What does the government want to do?

The government wants

• to make it clear what responsibilities municipalities have to help people struggling in the housing market
• to help more persons with intellectual disabilities to buy a home instead of renting
• to know more about how people with intellectual disabilities live

3.6 Right to leisure activities

Everyone has the right to

• participate in culture
• have hobbies
• get involved in festivals and camps
• participate in sport
• be involved in activities about religion and other beliefs

Leisure activities must be organised and planned so that everyone can be involved. It must also be easy to get help to be involved in activities about religion and belief. Help to take part in such activities should be a part of the service offers, in line with other activities.

The government wants all children to be able to take part in at least one leisure activity together with others. They also want it to be easier for persons with intellectual disabilities to participate.

Why are leisure activities important?

Being involved in culture and sport makes people feel included. It makes leisure time feel meaningful. It is also a way to make friends.

It is therefore important that persons with intellectual disabilities are able to participate in culture and sport like everyone else. If there are only separate activities for persons with intellectual disabilities, it is more difficult to get included.

Many people cannot participate in the activities they want to

Persons with intellectual disabilities cannot always participate in the activities they want to. This is also case for children with other disabilities.

It may be because others think that they are not able to perform these activities. It may also be because the accessibility or facilitation is not good enough. For example, the person does not have enough time with a support person, or the person cannot get to, or enter the activities.

It is important that persons with intellectual disabilities and other disabilities are included just like the others. This makes it possible to make more friends. Physical activity may also help to avoid many illnesses.

A support person may make it easier for people to participate

Municipalities are responsible for making it possible for everyone to take part in activities. Persons with intellectual disabilities may require help from a support person to participate.

A support person can help people to decide for themselves which activities they want to take part in. Municipalities must offer a support person.

There are many different activities to participate in

Persons with intellectual disabilities take part in many cultural activities, such as music, dance, and visual arts.

Over the last twenty years, more sporting activities have been offered to persons with intellectual disabilities. Most persons with intellectual disabilities take part in sport with their local sports team.

Not all sports offer inclusive activities. Persons with intellectual disabilities are therefore not always able to choose which sports they participate in. Children can feel excluded when they are not able to participate in sports together with their classmates.

3.6.1 What does the government want to do?

Persons with intellectual disabilities should have the possibility to take part in leisure activities in the same way as others.

The government wants

• to work towards everyone being included when they participate in art, culture, volunteering, and sport
• to ensure that carer certificates are digitalised, and that events offer free tickets to carers
• to work towards all children being able to participate in at least one leisure activity together with others
• to make the service from the Norwegian Library of Talking Books and Braille better known so that everyone has access to books
• to continue to work to make sure that people can participate in religion and other beliefs when they are at hospitals and other healthcare settings.