WRITTEN SUBMISSION REGARDING CRPD

People with disabilities make up approx. 17-18% of Norway's population and is thus the largest minority group in society. Nevertheless, it is precisely this group that to the greatest extent experiences that their human rights are not safeguarded.

Discrimination, bullying and harassment, lower expectations and demands through schooling, exclusion from the labor market, inaccessible buildings, means of transport and websites, as well as a lack of opportunities to live free and equal lives are just some of the issues they face.

On 9 March 2021, the Storting will once again vote on whether the CRPD is to be incorporated into Norwegian law. CRPD stands for the UN Convention on the Human Rights of Persons with Disabilities. That it is incorporated means that the convention takes precedence should Norway violate any of these human rights - something that actually happens every single day. There are only a few who shout loudly about it and unfortunately many of our Storting politicians do not want to acknowledge that it is a problem either. Selective hearing and blinders work well when someone becomes too demanding.

In a report from 2019 prepared by as many as 125 organisations, mainly disabled people's own organisations, extensive human rights violations in Norway are documented. The report was prepared in connection with the fact that in 2019 the Norwegian government was consulted by the UN committee that monitors the CRPD convention.

One of the consistent findings in the report is that for many people with disabilities there is a big difference between having the right on paper and getting the right in practice. One of the reasons for this is that there are large municipal differences.

On 25 and 26 March 2019, Norway's "right to school" appeared before the UN in Geneva and explained how the CRPD is fulfilled in Norway.

Norway received strong criticism from the UN for not valuing the rights of people with disabilities and for the way they are treated.

During the hearing, the UN stated that it is both interesting and very shocking how Norway boasts of being best in class in terms of human rights, when the human rights of people with disabilities are actually neglected. The committee also pointed out that Norway must realize that these people are not patients and users, but citizens with human rights.

The Norwegian authorities are failing to fulfill the human rights of people with disabilities, according to the UN. This therefore also applies to children and young people in this group.

UN Convention on the Rights of Persons with Disabilities.

Article 7 – children with disabilities:

The parties must take all appropriate measures to ensure that children with disabilities can enjoy all human rights and fundamental freedoms in full and on an equal basis with other children.
In all actions affecting children with disabilities, the child's best interests must be a fundamental consideration.
The parties must ensure that children with disabilities have the right to express their views freely in all matters that affect them, and that their views are given due weight in accordance with the children's age and maturity, on an equal basis with other children, and that they have a claim to help adapted to their disability and age in order to be able to exercise this right.

BPA

In order for people with chronic illness and functional impairments to be treated equally and experience real freedom, a good tool is precisely BPA (user-directed personal assistance). When BPA works, it provides great opportunities for the person to participate, be included, experience mastery and be free. The scheme was enshrined in rights in 2015, but has unfortunately proven not to work according to its intention: to give disabled people the freedom and independence to live active, equal and meaningful lives. Yes, simply an equality tool.

But what is meaningful about being isolated in your own home for large parts of (if not all of) the day? Couldn't attend school? Not being with friends? Don't go to sled hockey? Unable to participate in working life? Not visiting his family in another city? Not being able to go to the bathroom at night and thus lying in your own urine and faeces? Pushed to the extreme because you have to use all your strength to keep your own child alive? Are you threatened with child protection if you complain about the help that is given or the help that you don't get? Quit your job because the fight against the system wears you out? We ask, in what way is this equality?

With BPA, no one would suffer such tragic fates, and no one would have to expose themselves in the media and in the judiciary to have their human rights fulfilled. But unfortunately, and precisely because it is the municipalities that have all the power and decision-making authority, the opposite often happens.

Too many municipalities and their case managers misinterpret and simply do not know the legislation they are set to administer, and user participation is not a reality for many. In other words, the lives of the sick and disabled depend on whether they meet the right person in the right municipality. In Harstad municipality, for example, children and young people do not receive BPA, because the municipality believes that children have no right to it. In the Rogaland municipality of Sandnes, they believe that BPA is not an equality tool for children, and that it is exclusively a relief scheme for parents. In Sandnes, they have also locked BPA hours to nights, even though this is against the law.

In Asker municipality, they remove the BPA scheme from their residents when appropriate and instead place them in a nursing home, even if there is no change in the resident's needs or wishes, while in Sola municipality, BPA is given "preferably in one's own home". Levanger municipality rejects BPA despite the fact that residents have large, 24/7 needs for assistance. "I recommend you stay at home with your child, as most other mothers of disabled children do" is the message from Kristiansand municipality, while in Nittedal the scheme is described as luxurious. Yes, well, it sure is a luxury to be disabled!

In Gjerstad municipality, 19-year-old Hannah Lunden has to choose between schooling and social life during the day, or help to get around and urinate at night, while in Gamle bydel Oslo, 2-year-old Sanaa can die of suffocation at any time because the municipality defies the specialist health service. A resident of Bergen was told that he must not believe that he could apply for more hours of BPA, just to have ladies in the company to entertain him.

These examples of horror underpin the need to incorporate the CRPD into Norwegian law.

We also need national attitude campaigns and clear government guidelines that specify how BPA should be practised, and this also applies to other public services and benefits. We in the Løvemammaene organization know that the attitudes and resistance permeate the entire system. This is due to both a lack of knowledge, attitudes and imprecise guidelines and legislation. There is too much room for interpretation, little room for user participation, an idea that minimum help is good enough and a bit of economics that almost always overcomes the human perspective. It helps those who are suffering here and now little that a BPA committee has been set up to assess the scheme - because tomorrow it may be too late.

Fully 100 percent of children and young people under the age of 18 stated in a survey that they have to lower their social life and leisure time, and are banished to isolation, because they do not get enough hours with BPA. Does this make sense? Is this equality? Is this freedom?

When it comes to children and young people with chronic illnesses and functional impairments, we also know that there are many who lose large and important parts of their childhood and their education because they do not receive good enough services from the municipality. Several municipalities consider it perfectly fine to provide point-by-point health services, carried out by random people in home nursing, into the daily school life of children who are dependent on familiar personnel, predictability and security. The fact that BPA is not a right into school time is a nitrite and many of these children struggle through large parts or the whole of their education. Many feel that the municipalities force children with chronic diseases and functional impairments to use free after-school care from the 5th grade upwards, in order to provide BPA. It is far from all of these children who want or benefit from being at SFO with much younger pupils. How cool is it to be 12 years old at SFO when you could go home with friends after school, if only you had BPA?

In addition, we would also like to point out that a BPA scheme that does not include healthcare cannot be called an equality tool either. Many people who need BPA also have medical needs that can be well taken care of through BPA. It is problematic that, according to the government platform, the government does not see the connection between illness (with consequent need for health care) and impairments. One does not exclude the other - on the contrary, it often goes hand in hand. It cannot be the case that children and young people's needs for practical assistance, nurturing, care and health care are disregarded because the municipality's self-governance, random interpretation of the legislation and a lack of expertise in complicated disease scenarios. It is discrimination.

In order for the BPA to function as intended, the Storting must tighten the small and large gaps in the legislation, improve and expand the scheme, and drastically reduce the municipalities' room for interpretation. The differences in the municipalities must be eradicated! Not least, BPA must be for everyone – regardless of diagnosis, function and age. An incorporation of the CRPD will contribute to this.

Other "problem areas" as a result of the lack of incorporation of the CRPD into Norwegian law are:

Real user participation
There is a glaring lack of real user participation for people with chronic conditions, functional impairments and developmental disabilities.
Lack of legal certainty for children and young people with disabilities and complicated health conditions
We need separate health legislation for children and young people. Coercive use and the coercive clauses are also not adapted to children and young people.
Lower age limit on companion certificate
Children under the age of 8 are discriminated against. They are prevented from participating in society in the same way as able-bodied children of the same age because they cannot/are not allowed to have a companion without it costing them twice as much to participate.
Universal Design
Only 80% of the country's schools are universally designed, public transport is not available, workplaces are not available, leisure activities and other offers are difficult to access due to lack of universal design, websites lacking sign language interpretation and visual interpretation are some of the examples. Not even the Storting – the country's center for democracy – is universally designed!
Relief (or rather the lack of it)
Relief measures are introduced too late or not at all. Especially minorities with a different ethnic background fall under the radar and receive very little or no help from the municipalities.
Lack of aids
Almost every year, the pot for activity aids is already empty in May/June.
Care allowance from the municipalities
Bets of NOK 60. hours before tax, a "generous" 24-hour care allowance per month granted despite round-the-clock nursing and care, or just blank refusals despite obvious and great need for help or with a background of young age, is the situation for many relatives. The care allowance must be established as a right and be possible to live on!
Lack of rights to have a language (e.g. ASK, sign language)
ASK (alternative and supplementary communication) is not recognized as a minority language in the Norwegian Language Act. Because of. this does not give non-verbal children and young people who use speech-controlled PCs the opportunity to learn English at school.
ASK is threatened per date in the proposal for a new Education Act. There are very many children with chronic illness or functional impairment who need ASK in everyday school life, therefore we need general laws that ensure that these children are not discriminated against in not getting what they need in schools.
Deaf and hearing-impaired children may, according to § 2-6, have the right to training in and in sign language. We see that this right is not fulfilled at several of the educational institutions, often due to a lack of staff with sign language skills and in some places a misjudgment that technical aids such as hearing aids, BAHA and CI are sufficient for these children to function as hearing. Deaf and hearing-impaired children are thus not given the opportunity to use a language they understand and can fully express themselves in. Several report that this causes these children to struggle both academically and socially and suffer from what is called language deprivation.
Guardianship Act
An old-fashioned arrangement and a piece of legislation that violates the CRPD in several areas.
"Institutional society"
Despite strong warnings and reprimands from the UN and Norwegian interest organisations, we continue the development of institutions that will "keep" people with developmental disabilities or in need of relief measures in the country's municipalities. It's a shame!
Special education and other assistance in kindergarten and school
Lack of knowledge and expertise in children with chronic illness and functional impairments, early efforts that are disregarded in favor of financial savings, too few hours and too little help/assistance, threats to child protection, schools that review the recommendations of other professional bodies and low expectations are among the challenges we is facing. Each child must be assessed individually and given the adaptations they need to have a functioning everyday school life.
Minority families
Families with a different ethnic background become double minorities in the face of the public assistance system. Language barriers and a different culture make communication challenging for many, and a lack of information about who and where to turn for help is unfortunately missing from the public sector. These families are therefore often isolated at the same time as they are in very demanding nursing and caring situations at home. On top of this, new figures from Bufdir show that 4 out of 10 young people and immigrants have experienced discrimination.
Relatives of children and young people with disabilities
Relatives are a non-renewable resource that accounts for almost half of the country's man-years. It is estimated that the approximately 800,000 relatives in Norway provide approximately 110,000 man-years, compared to the welfare state which provides 120,000 man-years. Many of these are parents of children with serious and/or chronic illness and other disabilities. In Norway, it is estimated that at any given time we have approx. 4,000 children who go under the term "seriously/life-threateningly ill". In addition, we have a number of children with disabilities who do not come under the term, but if we start from the 17% of the population that people with disabilities make up, this will mean approx. 187,000 children and young people between the ages of 0-17. We are therefore talking about close to 200,000 children and young people, including parents, siblings, grandparents and other relatives.

It is worth mentioning that 79% of Norway's relatives who provide nursing and caring work are aged 40-69, i.e. of working age. No one benefits from these being worn out/resigned/prevented from working.

Seen from a socio-economic perspective, the state has everything to gain and nothing to lose by incorporating the CRPD into Norwegian law. Increased equality leads to increased participation.

When people hear about people with disabilities, many associate it with words like "paralyzed", "developmentally disabled" or "disease".

But the previous votes on the CRPD have proven time and time again that it is the state that is sick - the body that is supposed to look after all its population is not up to the task. It is the state that inhibits social development and accessibility, and that prevents opportunities for everyone. It is the state that is lame - not the people who demand equality.

Tragic cases of children and young people in nursing homes, young people in after-school care against their will, children who are not allowed to express their will, pain and wishes, and children who do not receive appropriate services at home, will continue to appear, as long as our parliamentary representatives continue to sit on the fence in the most important equality battle of our time.

Our elected representatives have been elected to the Storting precisely to look after the people they represent. Nevertheless, it is not entirely incomprehensible that we have attitude problems in the country's municipalities and the "system" in general, when the message from the Storting in recent years has been that people with disabilities are not worth as much.

In 2019 and 2020, an overwhelming majority in the Storting, apart from SV, Rødt and MDG, voted against recognizing disabled people as equal citizens in Norway. We do not accept such condescending attitudes from the highest levels. Now they once again have an opportunity to do something about it.

It is time for the other parties to live up to what they stand for:

Conservatives who believe in Norway, apart from people with disabilities?
KRF with human dignity at the centre, but where people with functional impairments still have to endure standing on the sidelines.
AP who wants everyone to join - now finally too works.
FRP for most people, just not the people with disabilities - right?
Liberals who are on the team with the future - the one who continues to exclude and discriminate against the country's largest minority.

We demand full freedom for the hell - for everyone.