4 Who are responsible for the rights?
In short
In this chapter, you will read about the responsibilities for rights and services to persons with intellectual disabilities and their families:
- Both the state and the municipality are responsible for getting everyone what they need.
- Many do not get what they have a right to.
- Parents of children with intellectual disabilities have more responsibility than other parents.
- Politicians have to listen to persons with intellectual disabilities.
The ministries are responsible for equality
The state is divided into many ministries. The ministries are responsible for their own subject fields. For example, the Ministry of Education and Research handles issues relating to schools.
All ministries are led by a Minister. The ministries are responsible for equality within their field. The Ministry of Culture and Equality should also help other ministries in their work on equality. There should be equality everywhere.
The Ministry of Culture and Equality has an extra responsibility to ensure that other ministries work towards
- everyone being included
- everyone participating
- no one being discriminated against
Persons with disabilities should be a part of policy-making. For example, there should be persons with disabilities in councils and committees working on issues that are important to persons with disabilities.
Municipalities have a great responsibility
Municipalities are responsible for many services for their inhabitants. They can decide on many different things. For example, municipalities decide where new houses can be built. They also decide on the types of buildings that can be built in specific places.
It is good that municipalities get to decide over lots of things. They have best knowledge of the local context and people living in the municipality. Therefore, they know what people in their municipality need.
It is important that the people living in the municipalities take part in decision-making in their municipality. This is called local democracy.
Municipalities are responsible for citizen services
Municipalities should provide the welfare services that persons with intellectual disabilities need. The services should be a part of the same system as the services for everyone else living in the municipality. There should not be a separate system with services only for persons with intellectual disabilities.
Persons with disabilities shall be consulted about issues and decisions that concern them, and municipalities and county authorities should appoint councils for persons with disabilities. These councils should know about all issues relating to persons with disabilities and ensure that persons with disabilities are able to say what they think about these issues.
4.1 Not everyone currently receives their rights
It varies between municipalities whether persons with intellectual disabilities receive their rights. In some municipalities, they do not receive the services they are entitled to, or the services they need.
Persons with intellectual disabilities are forgotten in policy
When politicians make policy for persons with intellectual disabilities, they often make policy about health. However, persons with intellectual disabilities should be a part of all policies. Policy for persons with intellectual disabilities should focus on equality.
There are not many persons with intellectual disabilities who work with persons without intellectual disabilities. Therefore, people do not think that much about persons with intellectual disabilities.
Politicians must listen to persons with intellectual disabilities
It is only persons with intellectual disabilities who know how their lives are. It is therefore important that councils and committees listen to and include people with intellectual disabilities.
To create this white paper, the government arranged a seminar where persons with intellectual disabilities spoke about their situation. This is an example of how persons with intellectual disabilities can be heard.
Persons with intellectual disabilities should get to tell which services they need
It is important that persons with intellectual disabilities get to speak about the kinds of services they need. It is the persons themselves who know their own situation best. They can also get their representative organisations to give input.
Persons with intellectual disabilities rarely get to speak about what they need. The municipalities who handle the services often lack a good system to involve people.
Not all the people who are working with persons with intellectual disabilities know which rights they have.
Many also believe that persons with intellectual disabilities are able to do less things than they actually are.
The services must co-operate better
Persons with intellectual disabilities often receive help from many different places, for example at home, school or at work. However, the different people and services supplying them help do not always work together well. This makes it difficult for persons with intellectual disabilities when they start something new. For example, if they need to change school, or when they are finished at school and need to start working.
Persons with intellectual disabilities do not always get BankID (electronic ID)
Not everyone with intellectual disabilities gets BankID (electronic ID for secure information). This makes it impossible for them to use all state and municipal websites. Many websites have strict login requirements. The government is looking into a solution with something similar to BankID to make it possible for more people to log in to these services.
The COVID-19 pandemic had major consequences
During the COVID-19 pandemic, many services were closed. This was to prevent people from getting infected.
Many persons with intellectual disabilities need help to take part in society. They also need help to do things in their leisure time and to live good lives. When the services closed, they could no longer do these things. Therefore, the COVID-19 pandemic had a worse impact on many persons with intellectual disabilities than others.
In addition, some of the services were worse when they reopened after the pandemic.
The government believes that persons with intellectual disabilities must keep their rights if a new pandemic occurs. If we need to avoid infections in the future, we will need to do things a little differently.
4.2 Help in making decisions
A guardian can help
Everyone should get to decide for themselves. However, some people will need a bit of help to do so in one or more areas of life. In this case, they can have a guardian to help. A guardian may, for example, help to
- ensure that they receive their rights
- handle money and loans
- find out whether they should sign a contract
- find out whether they should end a contract
Since everyone should be able to decide for themselves, a guardian cannot make decisions for a person against their will. In an ordinary guardianship the guardian’s job is to help the person make decisions and conduct necessary actions to help realise the person’s own wishes.
An ordinary guardianship is voluntary, and a person must agree to have a guardian. The person must also agree to who their guardian will be.
There are around 42,500 adults with a guardian in Norway. Many of these are persons with intellectual disabilities.
The scheme where someone has a guardian is called a guardianship.
Guardianship order
If it is absolutely necessary to help someone have their rights respected, a court can decide that there are some things the persons cannot decide for themselves. For example, the person cannot take out a loan on their own behalf.
In such cases, the person may have to get a guardian even though the person does not agree to this. This is known as a guardianship order. It can only be ordered by a court, and only if the person is not able to take care of themselves. For example, if someone gives all their money away or uses it on gambling instead of paying for food, clothes and accommodation. It is very rare that someone has to get a guardian against their will.
The guardian shall always listen to the opinions of the person the guardian is helping. This also applies if the person has been ordered to have a guardian against their will. The guardian shall always help make decisions so that the person is able to live the life they want to the greatest extent possible.
It is possible to complain to the county governor if the person who has a guardian disagrees with the guardian’s actions.
Some people do not understand what a guardian is
Some people do not understand what it means to have a guardian, regardless of how much help they receive to understand it, or they do not understand what the guardian can decide. It can also be difficult for some people to clearly explain what they mean. These people may need more help because it is difficult to find out what the person agrees or disagrees with. It may also be difficult to find out whether the person wants to have a guardian.
When a person does not understand what a decision means, we sometimes say that this person lacks capacity to make decisions.
These people should be able to decide as much as they can, just like everyone else. However, they often need even more help to make decisions than other people who need the help of a guardian.
The Guardianship Act is being changed
The government is working to change the Guardianship Act. The law should be clearer that receiving the help of a guardian is voluntary. It should be clearer in both the rules of the law and through the wording of the law.
In addition, it will be made clearer that guardians in ordinary guardianships cannot do something the person disagrees with.
The law will also be made clearer when it comes to guardians for people who do not understand what a guardian is, or what the guardian is there to help with (those who lack capacity to make decisions). The law will be changed to say more clearly that these guardians must also make decisions so that the person is able to live their life how they would like to.
The law relating to guardians is called the Guardianship Act.
4.3 Help for parents of children with intellectual disabilities
All children and young people should have a safe and good childhood. The government wants to listen to the families about what they need.
The government wants all children and young people to receive better services. That shall make differences in society smaller. That shall also give the families more freedom.
Parents of children with intellectual disabilities have more responsibility than others
Having a child with intellectual disabilities can be difficult. Research shows that parents of children with intellectual disabilities have a tougher time than other parents. It takes a lot of time and energy to ensure that these children receive what they need.
Parents of children with intellectual disabilities often continue to look after their child once they are an adult. 1 in 5 adults with intellectual disabilities still live with their parents.
The parents are not always satisfied with the services
Some families move to different municipalities or neighbourhoods that have better services for persons with intellectual disabilities. These are so-called social care refugees.
Parents of children with intellectual disabilities often have a different impression of the public sector than other parents. They often lack the information they need. They also often apply for things that they do not get approved. This makes them have less trust in the state and municipalities than others.
Equality between parents is also worse in families where a child has intellectual disabilities. This is because the mother in the family often quits her job or works less to look after their child.
4.4 Protection against violence, abuse and exploitation
Who are the victims of violence, abuse and exploitation?
Some people are more likely to be victims of violence, abuse and exploitation than others. It happens more often with
- very young or very old people
- women
- persons with disabilities
A person who is a member of more than one of these groups is in even greater danger of being a victim of violence, abuse or exploitation.
Women with disabilities are more likely to be victims than men with disabilities.
We do not know how many persons with intellectual disabilities are victims of violence, abuse or exploitation. Many speak up when something like this happens. However, there are just as many who do not say anything. This makes it difficult to know how many are victims of these issues.
Persons with intellectual disabilities are at a higher risk of violence and abuse
Many persons with intellectual disabilities live in a way that makes the risk of violence and abuse higher. Some things can make this risk higher are if
- their home is similar to an institution
- their home situation is rarely checked by anyone
- they do not know enough about self-determination
- they are not allowed to decide for themselves
- the employees quit after a short time and new employees frequently come along
- the employees only work for a few hours per week
- the employees are not trained
How can we avoid violence and abuse?
To avoid the risk of violence and abuse, there should be someone checking in on how things are going. They should also check that there are good employees who understand the law, and that the service is well designed.
It is also important that everyone learns about what violence and abuse are at school. Everyone should also learn about sex.
The law states that municipalities should take extra care to ensure that those receiving help from others do not become victims of violence. They should also make sure that they are not coerced or tricked into having sex. Municipalities should have good plans in place so that they can uncover abuse when it occurs.
4.4.1 What does the government want to do?
The government wants to protect persons with intellectual disabilities against violence and abuse.
The government wants
- to continue working on co-operation between different services and agencies that are meant to protect adults against unlawful events – this co- operation is called TryggEst
- to teach the employees at crisis centres so that they know more about persons with disabilities (a crisis centre is a place someone who is in danger can turn to for safety)
- to teach the employees in health services about violence and abuse
- to continue offering a service that parents can call when they are struggling with their children – this service is called Foreldresupport (Parental Support).
4.5 Right to help in interaction with the police
When someone finds it difficult to understand things that most others do understand, the person may have what is known as a cognitive impairment. Intellectual disabilities are an example of a cognitive impairment. When the police arrest someone with cognitive impairments, the person has the right to facilitations and help when the police work on the case. It may be difficult for the police to know whether the person they are arresting has a cognitive impairment.
If the police are not sure, they should use facilitation when they question the person. Questioning refers to explaining to the police what has happened.
Boks 4.1 What is violence, abuse and exploitation?
Violence is when someone harms someone else. The most common example is when someone hits someone else. This is an example of physical violence.
Abuse and exploitation are when someone forces or tricks someone into doing something they do not actually want to do. If someone forces a person to work without pay, they are exploiting them. If someone uses someone else’s ID to pretend that they are that person, they are abusing the other person’s identity.
Abuse is when someone does something that denies someone else their rights. Violence, abuse and exploitation are all different forms of abuse.
When talking about this, it is most common to hear about sexual abuse. This is when someone uses someone else’s body for their own pleasure when they have not received consent to do so.
Around 1 in 10 people in prison have cognitive impairments. However, there are undoubtedly more, as the prisons know very little about this topic. These people do not receive the facilitations they need.
4.5.1 What does the government want to do?
The government wants
- to work for adapted activities for persons with intellectual disabilities in prison
- to work to find good solutions so that persons with intellectual disabilities in prison have access to good services.
4.6 Fight against hate crime
Boks 4.2 What is a hate crime?
Hate crime is when someone does something illegal because they do not like specific groups of people.
A hate crime against a person may involve
- where someone or their parents come from
- the religion or other beliefs they have
- who they love
- the gender they feel they have
- the gender they would like to be
- whether they have a disability
Examples of hate crime against specific groups:
- saying something that shows hate or discrimination
- harming someone
- threatening someone
- damaging someone else’s property
- trying to make someone else do something illegal
- trying to get others to hurt someone
People do not believe that there is hate crime against persons with disabilities
Very few persons tell the police about hate crimes when they occur against persons with disabilities
Many people think that it does not happen very much as they do not hear much about it. However, their organisations say that people do not speak up when hate crimes occur. This is often because they do not understand that a hate crime is occurring.
We should use a word for hate against persons with disabilities
People have a good understanding of hate crimes when it concerns the colour of someone’s skin. This is because we have the word “racism”. We also have the word “homophobia” when people do not like gay people. We also have “islamophobia” when people do not like Muslims. The English word for hatred towards persons with disabilities is “ableism”.
However, there is no specific word for this concept in Norwegian, though the Swedish word “funkofobi” has started to be used in Norway.
The fight against hate continues
The government wants to continue its work against people saying hateful things.