The right to live independent lives and to take part in society is fundamental for all of us. Even so, the developmentally disabled’s opportunities for independence have weakened over the past 20 years. From a parent’s perspective, it is as discouraging as it is startling that the municipalities’ way of organizing services contributes to restricting the developmentally disabled’s freedom of choice. The Equality and Discrimination Ombudsman’s recent report on, among other things, how the services inhibit or reduce the opportunity for participation and independence, seems to paint a further frightening picture: The municipalities are unable to contribute to giving society’s most vulnerable people a good life. The report points to such significant deficiencies in an already weak service offering that it should immediately force radical changes to current practice. Instead, department director in KS, Åse Laila Snåre, states that it is not about the willingness to help, but that the service offered is a result of a lack of resources and expertise. The variation in the quality of service provision between municipalities, even within the same region, makes it difficult to believe the KS director’s statement. In contrast, it is much easier to trust the UN in their criticism of the differences in the municipal service offerings. Unfortunately, KS’s willingness to break human rights obligations is alarmingly great. Snåre gives a glaring example of this, when she commented on the findings concerning living arrangements: “I understand that it is difficult for the individual, who does not get to choose for himself. If you want to live alone, living with five others is a lot.” The statement can hardly be understood as anything other than an argument for the growing trend of gathering developmentally disabled people in institutions. This is how municipalities, well supported by their interest organisation, choose to defy national guidelines, international obligations and stinging UN criticism. The right to choose where and how one wants to live is unequivocally enshrined in Article 19 of the UN Convention on the Rights of People with Disabilities. As the father of a boy with such a severe developmental disability that throughout his life he will need help to master all challenges, it is difficult to accept that it is the system itself that reduces his opportunity for a good quality of life. It is rigged so that citizens, only by virtue of diagnoses, are forced to live lives where they are subjected to arbitrary and disproportionate coercion, and where “big business” has become a kind of municipal mantra. A municipal practice has been developed based on a view of people in which disabled people are ranked as second-class citizens. And so we as relatives are left in a year-long emotional quagmire: In order to live reasonably good lives, we are forced to choose care services for our children that are so far below the standard we expect for ourselves, that we have to enter into moral compromises which in the end reduces own quality of life. Fortunately, the current situation can be improved. It requires the recognition that the current division of responsibilities and tasks between the state and the municipality is more of a hindrance than a help for the developmentally disabled. Paradoxically, the municipalities are hesitant about a scheme they admit they do not have the expertise or resources to manage. The solution is to give the services with the most expertise decision-making authority. The municipalities’ task will then be to facilitate what the bodies that the specialist health service decides. This will lead to the following: The municipalities will free up resources they currently waste on arbitrary and weak case management, and the scheme will reveal the disabled’s actual needs. Then the money must follow the citizen – it will have to be a state matter to take care of. On behalf of my son, I cannot accept that the system is rigged so that service providers can negotiate or budget away from fulfilling basic human rights. The only guarantee we have with the current system is that, according to the municipality’s “holistic assessment”, we will receive a worse offer than what the specialist health service recommends. Such an arrangement would trigger an outcry from those involved in somatic health. In what other field would it be acceptable for the body with the greatest competence to have no real decision-making authority? The lack of will for actual change is the constant threat we live under. The fact is that people with disabilities are discriminated against in all areas of life: from the lack of universal design to outsiders, and from access to public health services to challenges with freedom of expression. There is no common spinal cord reflex that triggers collective demands for change when people with disabilities are subjected to gross injustice. A rebellion from below is made impossible by the scarcity of time and resources. For a family like ours, about 20 weekly hours are spent on follow-up, organization and fighting the bureaucracy. Instead, a wealth of individual stories is met with passing sympathy. And if the history of people with disabilities shows us anything, it’s that it always ends there. With individual events. Like an everyday miss. As if someone forgot to blow out a candle or lost a key. In the end, surely someone must be able to put all these bad experiences together into a bigger whole?
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Emergency call from an upset dad – Statement
