Oppression or Support? Social Policy in the Lives of Persons with Intellectual Disabilities

ABSTRACT Individuals’ self-determination, in the sense of making one’s own decisions and controlling one’s own life, constitutes a fundamental human right. It is also pivotal to the realisation of other human rights, and has become a founding pillar of social policy. Through interviews with eight persons who have intellectual disabilities, this article looks at whether, how, and why the promise of self-determination stated in Norwegian guardianship and social-care policies impacts practice. As such it aims to give voice to perspectives that are largely underrepresented in human rights and social science research. The article finds that persons with intellectual disabilities commonly experience newly enacted polices as oppressive rather than supportive. Both social-care workers and guardians can easily obstruct the self-determination of persons who depend on their support, and Norwegian policies do not include efficient mechanisms for empowering these individuals. The article also provides some advice on how policies can better protect the rights of those who depend on decision-making assistance.


Introduction
The right to self-determination (to make one's own decisions and control one's own life) is a universal human principle protected, inter alia, by the Universal Declaration of Human Rights, the International Covenant on Civil and Political Rights, and the UN Convention on the Rights of Persons with Disabilities (CRPD). 1 The CRPD obliges its 185 parties to ensure that persons with disabilities enjoy self-determination on equal terms with their non-disabled peers. 2 Ensuring individuals' self-determination, understood as their freedom to make their own decisions and live the lives they want, is also a founding pillar of social policy. 3et protecting self-determination is by no means an easy task.One in four in the population may at any time have substantial difficulties developing preferences and acting upon their wishes due to, for example, their youth; intellectual, cognitive, or mental challenges; or severe somatic health problems. 4How to best support these individuals' selfdetermination is an open-ended question and no perfect solution is likely to exist.Although human rights law provides some standards, the correct implementation of the right to self-determination is a controversial topic. 5Inquiring into the experiences of those targeted by human-rights-related policies helps understand how and whether rights materialise in practice.It is also a necessary part of developing good policy solutions through an ongoing process of evaluation.
By interviewing persons with intellectual disabilities (ID), this article looks at whether, how, and why the promise of self-determination stated in Norwegian law and policy impacts practice.Although persons with ID are more dependent on services and assistance to navigate through life and as such are highly affected by the way social policies are enacted, scholars know very little about their thoughts on the matter.As such, this article aims to shed light on perspectives that are largely underrepresented in human rights and social science research. 6orway is a country with longstanding clear political goals on protecting the selfdetermination of persons with ID.Using Norway as a case study, this article looks at how persons with ID experience two areas of social policy crucial for their ability to be self-determining agents on the same basis as other citizens: guardianship policies, which are paramount to an individual's right and ability to make formal decisions and enter into legal relationships, and social-care service policies, which significantly influence an individual's ability to live an independent and active life in line with their own values and beliefs.
The article addresses three main knowledge gaps in the current literature.First, while several recent human rights articles have explored the legal and political dimensions of guardianship, including CRPD article 12's quest to abandon traditional guardianships, 7 only a few have inquired into the experiences of those living under guardianship. 8This study thus adds important information on how guardianship works from the perspective of those experiencing guardianship.Because many countries are currently reforming guardianship systems or looking for ways to replace them with supported decisionmaking systemsthrough which people with a disability (as opposed to their guardians) retain control over their decisions9 knowledge in this field is of high political relevance.
While more research has been conducted on how persons with ID experience their ability to make their own choices within the context of social-care services,10 such studies are typically situated within the fields of health, social care, or disability research, and often lack a clear human rights perspective.The second main knowledge gap is created by the fact that such studies also tend to only include persons with verbal language and mild to moderate ID. 11This study includes two persons with intensive support needs and no verbal language.
Third, although the right to self-determination is relevant to all areas of policy and life, different policy fields are usually studied separately.Guardianship has largely been the domain of legal researchers, while care services have been the domain of health and social researchers.A holistic perspective on guardianship and care service policies is lacking, even though both are crucial to an individual's right to self-determination and the protection of one human right is known to be dependent on the protection of other human rights. 12The fact that a guardian has an important role in ensuring the rights of persons with ID, including social-care rights, is another indicator that it is important to look at these policy fields together.Such an endeavour may reveal whether the different policies create synergies or clash in terms of fulfilling human rights.By looking at how self-determination is experienced in both a guardianship and social-care setting, this study provides a bridge between these policy and research fields.
The article begins by explaining briefly what the right to self-determination is, the importance of policies supporting self-determination, and the recent global push towards developing supported decision-making systems.It then presents the case of Norway, including a discussion of the method applied here, consisting of in-depth interviews of eight persons with ID and five persons in their close circle, and ethical considerations.
Next, three main findings are presented.Firstly, serious limitations to the right to selfdetermination exist in the context of both guardianship and social care.Such limitations include experiences of not being allowed to choose one's own guardian, not being included in personal economic decisions, and not being able to leave one's home due to lack of assistance.Secondly, persons with ID are in a situation of powerlessness: in practice, they are largely blocked from getting their views and interests across to those who make important decisions about their lives.Some also experience threats and regimentation.This finding shows that self-determination is hampered and that the lack of empowering mechanisms is a potential explanation for why policies are not well implemented.Thirdly, trust and close relations are important success factors for increasing self-determination.This finding points towards a way of strengthening the right to self-determination in the future.
Taken together, the findings show that guardianship and social-care policies can easily take on an oppressive rather than supportive function, impeding self-determination rather than promoting it.The article gives some advice on how policies related to the right to self-determination can be strengthened, not only for persons with ID, but for everyone in need of decision-making support.Decision-makers should listen more to the experiences of persons who need decision-making support.Mechanisms that ensure that they can voice their concerns freely, without being afraid of retaliation, are needed.Also, to implement a human-rights-compliant supported decision-making system, the relationship between the persons who receive support and the decisionmaking supporter(s) must be based on mutual trust.

The Right to Self-Determination
Self-determination is a universal human rights principle protected, inter alia, by the Universal Declaration of Human Rights, the International Covenant on Civil and Political Rights, and the CRPD.Self-determination is one of the general principles of the CRPD (article 3a), meaning that all other articles of the convention should be interpreted in line with it. 13elf-determination (or autonomy) 14 means making one's own decisions and controlling one's own life, that is, having agency or being self-governed.This entails being one's own person and to act on motives, reasons, and values that are one's own while being free from manipulative or distorting external forces. 15Self-determined behaviour is often defined as ' … volitional actions that enable one to act as the primary causal agent in one's life and to maintain or improve one's quality of life'. 16In other words, to be the (primary) person that makes or causes things to happen in your life.
A lack of freedom to be a self-determined agent, that is, being instead controlled by others and by external forces one does not authentically embrace, marks the height of oppression. 17Self-determination is therefore considered as constituting individuals as right holders and as actors under the law, 18 and it is commonly seen as the condition necessary for equal political standing. 19In the words of Stancliffe et al., 20 since the time of ancient Greece the concept of citizenship has implied ' … the capability of individuals to express their preferences, make their own choices and exercise control over their lives'.Self-determination can thus be considered the most important democratic right and a key dimension of individual quality of life. 21As the right to self-determination constitutes individuals as rights holders and as actors under the law, it is inherent in all human rights as a core principle and it is indispensable for having all human rights in practice. 22istorically and to a large extent currently, however, persons with disabilities have been deprived of their right to self-determination, and hence other human rights, on the presumption that they lack the required mental capacity to be self-determining agents.Grave human rights violations, including withheld political rights, forced sterilisations, and even torture have been justified by appeals to a lack of mental capacity and concurring lack of self-determination. 23Such practices are connected to a belief that mental capacities constitute the justification for rights, and that the ability to have agency exists non-relationallythrough the 'pre-society' independent rational being. 24n contrast, the CRPD is founded on relational theories of self-determination, which emphasise that everyone can make their own choices with the right support. 25Theories of relational autonomy see human beings as socially situated and formed, and accordingly self-determination as achieved through support and assistance from others. 26ccording to the CRPD, states should create ' … supported decision-making systems'.In such systems, adults with disabilities receive help in making decisions, but have the final word and decide who provides the decision-making help. 27If the individual does not understand the issue at hand or cannot express preferences directly, supportpersons can base decisions on what they think the person would say they wanted if they were able to communicate more clearly, drawing on the individual's general interests, personality, and lived experiences. 28nderstanding self-determination as relational provides a good theoretical basis for policies tailored to support individuals to become self-determining and free persons.It also relates, as we shall now see, to several recent political reforms in the disability field.

Self-determination policies
Two policy types are particularly important for the self-determination of those who need assistance with decision-making and everyday tasks: care-service policies and guardianship policies.Traditionally, in Western countries both are founded on paternalism; persons with disabilities have been seen as unable to decide and take care of themselves.
However, in the realm of social policies, by the end of the twentieth century these countries had gone through a wave of deinstitutionalisation reforms.These shut down institutions and envisioned individualised types of community care enabling persons with disabilities to live independently and integrated into society.Social carers should assist the individual with daily tasks and activities important to the individual and ensure these are accommodated.CRPD article 19 forbids institutionalisation and obliges states parties to ensure that persons with disabilities can live independently and are included in the community.
In terms of guardianship policies, state-appointed guardians have traditionally managed the interests of persons under guardianship by making decisions on their behalf, effectively banning them from making their own decisions.In recent years, however, many countries have reformed guardianship policies. 29The role of the guardian has been reformulated as acting out the actual wishes of the person who has guardianship, although the state's capacity to implement forced guardianships has not been abandoned entirely.
The CRPD further strengthens the impetus for policies enabling persons with disabilities to live independently, integrate in society, and make their own choices.CRPD article 12 forbids traditional guardianships and envisions their replacement with ' … supported decision-making systems'. 30As of January 2023, 184 countries and the European Union are party to the CRPD, and supported decision-making is beginning to take root throughout much of the world. 31mpirical research shows that with the right support most persons with disabilities, including those with intensive support needs, can make informed choices over most areas of life. 32Research has also consistently shown that persons with disabilities who ' … exercise greater self-determination have improved employment and quality of life, are better problem solvers, and are better able to resist and avoid abuse'. 33e case of Norway Norway is a good case for studying the experiences that persons with ID have with selfdetermination.Firstly, Norway considers itself human rights compliant.It ratified the CRPD in 2013, but protecting self-determination and independent living for persons with ID have been political goals for its governments since its deinstitutionalisation reform process started in 1991. 34Instead of replacing the old guardianship system entirely, however, Norway has tried to reform it so that it increasingly takes on the central features of a supported-decision-making system.Although the current guardianship law is still written in paternalistic language, in recent years the government has proposed significant changes emphasising the importance of respecting the will and preferences of all individuals regardless of their ' … level of disability'. 35Moreover, key policy documents reiterate the main rule that guardianship is voluntary and that guardians cannot act in contradiction to the person's will. 36As regards to social-care services, the Norwegian Health and Care Services Act counts securing independent living and equality as two of its main goals. 37It also states that the services should, as far as possible, promote individual's self-determination.
Secondly, the country's welfare model emphasises egalitarian and extensive benefit levels, 38 and it ranks number two in the world on social spending per capita. 39This means that resources for implementing human rights and social policy goals should be less of a challenge than in many other countries.Thirdly, persons with ID in Norway have not previously been interviewed about their experiences with guardianship.

Methods and Ethical Considerations
In-depth interviews give rich insights into actual experiences, thoughts, and feelings, and are therefore particularly suitable for exploring individuals' experiences.Eight persons with ID (four men and four women) in their 20s to 40s from different parts of Norway and with different support needs volunteered and were selected for interviews.The interviews were part of a larger project on self-determination by the Norwegian Equality and Anti-Discrimination Ombudsperson; calls for the interviews were circulated on the Facebook pages of the Ombudsperson and two disability organisations.In the case of each participant, someone in their network had seen the advertisement.Their motivations for participating varied.Some joined because it seemed fun and exciting, others because they felt they had something important to say, and others seemed indifferent about whether they joined or not.
Two persons had no verbal language and more intense support needs.In these cases, interviews were not possible and instead I made observations and participated in one of their favourite activities to get to know them and their ways of expressing themselves, and to learn how they interacted with the people who assisted them.In addition, I conducted interviews with people in their close circlefamily members, guardians, 40 38 Gøsta Esping-Andersen, The Three Worlds of Welfare Capitalism (Princeton University Press 1990). 39OECD, 'Social Expenditure Database (SOCX)' (2020) <www.oecd.org/social/expenditure.htm> accessed 1 January 2023. 40Challenges related to letting the guardian participate in interviews are discussed in the next section.
they knew the best.Taken together, this allowed for a good impression of their self-determination 41 but it did not give direct information about how those two people experience their situation.The alternative would have been to exclude them from the research, leading to no information.
Persons with ID can have problems expressing their perceptions, and so those who wanted it (five in total, including the two with no verbal language) had a person whom they knew well with them.Each interview lasted between two and four hours and took place in October or November 2020 at a location selected by the interviewees.
From those with verbal language, informed consent was gained by providing an easyread consent form and explaining the content of the form orally both during the recruiting process and at the start of the interview.During the interaction and observations of those who did not have verbal language, I constantly looked for any signs of disapproval.In addition, the family member, the guardian, 42 and the main carer consented to the interviews.The interviews were conducted in line with Norwegian laws on research ethics and data collection.Data was anonymised and transcribed and identifiable characteristics were removed.
The interviews were analysed using a bottom-up hermeneutic approach where themes were first and foremost generated from the data (instead of applying theory to the data).As with all interpretive phenomenological analyses, the focus shifted back and forth from the claims made by the interviewees and the interpretation of these claims. 43I carefully coded the interviewees' experiences and claims, and analysed the data by looking for cross-cutting themes of policy relevance, particularly whether, how, and why selfdetermination was supported.

Interviewing persons with ID: challenges and solutions
In addition to the challenges of informed consent and lack of verbal language noted above, several other factors may compromise the validity of the interviews' results if not sufficiently accounted for.Difficulties with communication and understanding, and asymmetrical power and acquiescence, are potential problems that can be magnified when the person has ID. 44n-depth interviews are particularly well-suited to reducing such problems.Compared to a questionnaire or group interviews, for example, they allow for individually customised questions, tailored to the interviewee's language and level of understanding.In the study, an interview guide with central topics (such as the guardian, personal economy, being in charge in one's own apartment) was applied so that all interviewees were asked about the same topics.However, concrete questions and wordings varied, 41 Stefánsdóttir, Björnsdóttir and Stefánsdóttir (n 11); and Skarsaune, Hanisch and Gjermstad (n 11). 42Challenges related to letting the guardian participate in interviews are discussed in the next section. 43 and the interviewees were encouraged to speak freely about their experiences.Abstract concepts, such as self-determination, were broken down into more practical questions and connected to specific situations and experiences.As an example, instead of asking whether they had full self-determination, one question could be 'if you discuss something with your mother/father, who has the last word?' Irvin claims that certain concepts may have different meanings among persons with ID than among persons without ID. 45The understanding of concepts may also vary at an individual level regardless of disability, however.In two interviews it became clear to me that the interviewees associated the word 'help' with something negative because they had experienced that 'help' often meant 'control' or 'policing'.The format of the in-depth interview allowed such confusions to be cleared up.Another method I applied to make sure I understood the interviewees correctly was paraphrasing their responses.Paraphrasing together with checking of quotes were also done some months after the interview.
Five of the interviewees brought to the interview a trusted person, who knew their way of communicating well.Doing so can reduce possible misunderstandings and ease communication, but it may also compromise the privacy of the interviewee. 46This was a particular challenge in the two cases where the person was the guardian.In these cases, the guardians only participated in the first part of the interview.In the absence of the guardian, the person with ID was then asked some of the questions again, but in a different way.No questions about the guardian were asked while the guardian was in the room.
In-depth interviews are also useful for reducing the problems of asymmetrical power relations and acquiescence.Because persons with ID may, like other discriminatedagainst groups, be sceptical towards authorities or afraid of and less used to stating their opinion, spending time thoroughly talking things through and getting to know each other a little, thereby creating trust, is especially important.In this study, allowing the interviewees to have a trusted person with them also alleviated this problem.To give the interviewees more control and feel as comfortable as possible, 47 I asked them to decide the location of the interviews.For all but two, this meant at their home; one chose a café and the other their parents' house.
In-depth interviews are not suited for generalising information to the entire population in question.However, given that my interviewees were very different in personality, cognitive skills, age, gender, geographical location, and living arrangements, yet still had many of the same experiences and ways of perceiving self-determination, their experiences likely resonate among many other persons with ID.

Findings
My analyses of the interviews led to three main findings.Firstly, serious limitations to the right to self-determination exist in the contexts of both guardianship and social-care policies.Secondly, persons with ID are in a situation of powerlessness; in practice, they are largely blocked from getting their views and interests across to those who make important 45 Irvine, 'Conducting Qualitative Research' (n 44). 46Ibid. 47Ibid.
decisions about their lives.This indicates that self-determination is hampered, and that the lack of an empowering mechanism is a potential explanation for why policies are not well implemented.Thirdly, the interviewees identified trust and close relations as important success factors for increasing self-determination.This points towards a way of strengthening self-determination in the future.Each finding is presented and discussed below.
Main finding 1: Serious limitations to self-determination Despite variations in general satisfaction with the support and space they receive for selfdetermination, all interviewees talked about ways their self-determination was being or had been restricted.Taken together, their experiences show serious limitations to selfdetermination in the realms of both guardianship and social-care services.
The guardianship system A guardian can be either someone the person knows, for example a family member, or a professional guardian.An important purpose of Norway's guardianship policy is that guardians represent the interest of the person under guardianship and assist them in acting on their wishes.Overall, however, the persons in this study experienced guardianship as a top-down process with a limited basis in their wishes and needs.Despite the general policy stating that guardianship is voluntary, and that a person can choose their guardian and their guardian's mandate, none of the interviewees could recall guardianship authorities asking them about these matters.However, two interviewees, Ben and Sara,48 had spoken with the family member who became their guardian in advance of the guardianship decision and had agreed explicitly that guardianship was a good idea.
Most of the interviewees knew little about their rights, the guardianship system, or the role and duties of a guardian.The word 'guardian' was in itself seen as alienating, and Mary suggested that the word should rather be 'helper'.For those with professional guardians, their feeling of guardianship as something distant and out of their control was reinforced by the fact that they rarely met their guardian.Jane, for example, had only met her professional guardian once during the first half-year he had so far been her guardian.Jane had no verbal language and had intensive support needs, and there was an ongoing conflict between the social-care providers and her closest family member.In such a situation, it is particularly important that guardians get to know the person whom they are mandated to assist.
In the cases where the persons had professional guardians, the guardians were not seen as their representatives, but to some rather as representatives of the authorities or a tool for making administration easier for the local government.According to James: It was the local authority and [a family member] that suggested that I should have a guardian because in the house where I lived everyone had to have a guardian.That was easier for them.
In the cases where a family member was the guardian, the guardian was not seen as someone who represented the authorities.
Lisa and Eric clearly expressed that they did not want to have their current guardian.Lisa talked about a very controlling family guardian: She has to know everything that I do.Why I was downtown, what I was doing there, who I was with.It's driving me nuts!Lisa explained that because the guardian controls her finances and therefore sees where and when she has used her bank card, she needs to defend her spending every week.If the guardian thinks she has spent too much money on 'rubbish', like candy and soda, she will not get more money that week and will receive less money the week after.
Eric, who had a professional guardian, clearly expressed that he wanted his father as guardian instead.He had explained this to his current guardian and to employees at the local government, but nothing had been done.He had also told them who he wanted as a doctor, but the guardian did not make this happen either.
Even though the interviewees were not necessarily satisfied with the guardian or how the guardianship system worked, all but James saw guardianship as a necessity for getting the assistance and support they needed. 49James, however, said that: I would have liked to have control over my money myself.That is important.[Rather than a guardian] it could have been someone who assisted me in paying down my loan, take care of all the paperwork, and the rest I could have been in charge of myself […] If I was in charge, I would have gotten rid of all the people who have opinions about my mood and stuff.What you spend money on is private.Some of the interviewees talked about their dreams for the future, and in particular what they wanted to spend money onfor example, getting a dog.Some of them had not talked to their guardians about their goals, and thus they did not get assistance saving money to reach them.In these cases, the interviewees claimed that the guardians had not asked them about saving money or about whether they were happy about how their economy was run.
James and Lisa, for example, were upset because they received too little money and they did not like when and how their money was given to them during the week.They said that they had found it to be of no use speaking to their guardians about this.

Social care services
Despite the many experiences of lack of self-determination in the guardianship context, the interviewees felt that those who most strongly restricted their self-determination were not their guardians but the social-caregivers assisting them in daily or weekly tasks, depending on their care needs.Like persons with ID in Norway in general, none of the interviewees lived in an institution, and yetin contradiction to the Health and Social Care Actthey described practices that can be characterised as institutionalised: they had to follow the often rigid rules of those employed to provide care, there were limitations on who could visit them, some did not get to leave their apartments as much as they wanted to due to lack of assistance, and three persons described caregivers who had locked them in their apartments without their consent.

Susan explained:
It is very much like 'we decide, and you must listen', even though they don't say it aloud.
Susan and Lisa described their life situation as like being in a prison: I'm being attended toit's horrible!I feel like a child.Those who work here should get their act together because I must accept everything they say, this is not how it should be.It's like a prison.[Lisa]   They just let themselves into [my apartment] without asking first.They have come into my bedroom while I'm watching a movie.[Susan]   John had barely been outside during the past eight months.His days consisted of watching TV in his apartment.Because he could harm himself and others, he had to have two people with him if he was to go outside.One of his carers said that they did not have enough people to assist him, but they sometimes took him out in a car for a drivean activity they felt was safe with only one carer.
During the COVID-19 pandemic, all the intervieweesincluding those who lived in their own apartmentsexperienced limitations on visits from others although such limitations were not applied to the general population in Norway.Jane's closest family member encountered visiting restrictions regardless of the pandemic.Neither the guardian, the carer, nor the family member doubted that Jane had a very close relationship to the family member and received much joy from spending time with her.Thus one would assume that Jane, who is non-verbal, wanted a lot of visits from the relative.The restrictions were not based on an evaluation of what Jane wanted, however, but on the caregivers' requirements for doing their job.It was explained that constant visits from the relative made their job more difficult, especially because the caregivers had a poor relationship with the family member.

Self-determination has consequences for health
The protection of one human right is said to be interdependent and interrelated to the protection of other human rights. 50Hence, an interesting finding in this study is that restrictions and lack of control have consequences for health and well-being.Some interviewees described becoming passive, ill, or angry.James explained: Being ruled over by others can lead to angry outburst.Not everyone can handle it.
Family members and caregivers talked about self-harming and aggressive and uncontrolled behaviours as responses to dissatisfaction, but also mentioned that in some cases it was hard to know what triggered such behaviour.
Lisa was very sad and frustrated because some caregivers did not show up when they were supposed to and because she did not receive the help she needed.This made her so depressed that she was not sure she could cope any more.Telling the caregivers about her frustration did not help, because they corrected her and told to mind her language when she became angry.She did have a good relationship with her doctor, who had referred her to a psychologist.their rights claims were often ignored.One of them was afraid of retaliation, claiming that complaining about services could make the situation worse for the person with ID.
Another finding, adding to the experiences of powerlessness, was that two of the interviewees (Mary and Lisa) said that their primary contact person within the social care service was not someone they trusted, and that those in charge did not prioritise matching them with someone they did trust.This made it more difficult to voice concerns.
'Self-determination' can be misused Another finding that demonstrates a power imbalance is that some interviewees said their appeals to self-determination were sometimes used by caregivers as an excuse to not give sufficient help.Lisa had been declined the necessary assistance for going outside several times and eventually went out by herself.While outside she had a seizure that led her to hurt herself so badly that she had to go to the emergency room.According to Lisa, the carers then told her that she was to blame because it was her choice to go out.
They said that the seizures were my mistake, that I had chosen them myself.
However, the interviews also demonstrated the difficulties and the necessity of carefully balancing different considerations to promote self-determination overall.One of the family guardians said that people are very afraid of using force incorrectly, but forget that passivity, neglect, and under-stimulation are also potentially equally as negative an outcome.To avoid living a very limited life, his son (Robert) needs to be challenged by being taken to activities that he might initially protest about yet ultimately enjoy.Selfdetermination is misused a lot and often depends on what suits the caregivers, the family guardian stated.
Robert's caregiver also said that if a person signals that they do not want to go out or eat healthy food, it is easiest to give in immediately but this could be short-sighted because it may lead the person to 'act out' later or be worse off in the long run.He explained that where he worked, some people needed pushing or they would never go out.For some people the transition can feel intimidating, even though they like the activity they are going out to do.Not everyone understands that the transition (namely travelling) is necessary to get to the activity they like.It is difficult for social-caregivers to balance these considerations.
This also raises serious considerations as to how the right to self-determination is best understood.To most persons with ID, enjoying the right in practice requires assistance and accommodation, yet knowing when assistance is necessary to promote self-determination overall, and when assistance may actually deny the person their right to make a choice, is by no means an easy task.
Main finding 3: trust and close relations increase self-determination Just as theories of relational autonomy envision (see the section on the right to self-determination, above), trust and good close relations stood out as ways to strengthen selfdetermination.Of my interviewees, those who were happy with their guardian had family guardians.They emphasised that it would be wrong to have someone they did not trust and know well to assist them.I can talk to mom about everything.[Ben]   In these cases, the interviewees may have interpreted questions about guardians as questions about their parents, to whom they might be very loyal.Either way, it is important to notice that trust and knowing the person well were the reasons given for their satisfaction.In a couple of the interviews, it came across that parents would most likely get the last word in a discussion, yet their assistance and involvement were seen, with the exception of Lisa, as supportive and not controlling.
To live as independently and have as much self-determination as possible, for the interviewees with the largest support needs it was crucial to have strong supporters who advocated for their interests and spoke up on their behalf.In all these cases family members had this role and they seemed to put a lot more effort into the task than is stipulated by formal guardianship mandates.
Practising self-determination and independence and mastering everyday tasks were also important for gaining more self-determination.In line with relational theory (see the section above on the right to self-determination), many interviewees indicated that they gained more independence through learning from and taking part in social activities.Believing in oneself and being aware of one's rights were also seen as important.James said that he had become much more self-confident as he grew older and got his own apartment: I state my opinions now.I'm the boss here.It's my life.
Other commonalities for those satisfied with their potential for self-determination were having a job they enjoyed and knowing people in the local community; interviewees indicated that inclusion and good social relations were important for their ability to be selfdetermining agents.

Discussion and Conclusion
Ensuring individuals' self-determination is a human rights commitment and a founding pillar of social policy.Yet the legal and policy aims to enable self-determination fit unevenly with the actual experiences of the individuals in this study.The interviewees saw guardianship as a top-down process and social care as often limiting their freedom to live the lives they wanted.To a large extent, they were not listened to and not taken seriously by guardians and social-care workers.Even though a few were generally happy with the support they received, in total the findings indicate that guardianship and social-care policies can easily take on an oppressive rather than supportive functionimpeding rather than promoting the right to self-determination.This finding is relevant to a large group of the population.Many persons, including persons with cognitive, mental, or severe somatic health disabilities, currently depend on assistance from guardians and social carers to develop preferences and act upon them.Providing humanrights-compliant decision-making support is the responsibility of the authorities.
The oppressive potential of guardianship and social-care policies seems to occur because support is not clearly separated from, and is thus confused with, control.For example, while the CRPD requires putting the individual in charge of the process of defining what they need help with and how, in reality guardians have the power to regulate the lives of those under guardianship.This parallels the situation in social care, where this study indicates that the lives of people with ID are administrated by carers to a large degree.In both policy fields, sufficient mechanisms ensuring rights and policy aims of empowerment through necessary services and decision-making support are lacking.
This study points to several avenues for better understanding and protecting individuals' right to self-determination, which should be further explored in studies involving a larger number of interviewees.Importantly, for a supported decision-making system to work, the interviewees expressed that a strong bond of trust between the decision-making supporter and the person supported is crucial.To cater for such a bond, it would be important that the supporter does not have conflicting interests, e.g. they should not represent the authorities or be employed by those who provide the social-care services, and that the supporter and the person being supported are able get to know each other.
Mutual trust and service providers' knowledge of the individual may also be key to solving the difficult situations identified in the section '"Self-determination" can be misused', above.Difficult situations can occur, for example, when an individual must engage in a conditional activity (e.g.travel) to get to a desired activity, or to achieve a desired goal that they greatly value and is ultimately key to their self-determination.Given that self-determination is a core human rights principle, a person should therefore potentially be given restricted choices in terms of the conditional activity necessary to achieve the goal that the person greatly value.This insight shows how complex and challenging realising the right to self-determination is in practice.
Another important finding is that, due to lack of accommodation and empowering mechanisms, persons with ID were largely blocked from getting their views and interests across to those who make important decisions about their lives.Due to their disability and dependence on those who provide services, individuals who need decision-making support will generally have difficulties filing complaints and stating their opinion about the persons and services they depend on.One implication of this is that mechanisms ensuring they can voice their concerns freely, without fear of retaliation, are needed at the local level.In these situations, they should receive assistance from people who are not their guardian or the carer responsible for the service in question.This finding may be particularly relevant to understanding how CRPD article 12.4, which states that ' … States Parties shall ensure that all measures that relate to the exercise of legal capacity provide for appropriate and effective safeguards to prevent abuse in accordance with international human rights law', can be best implemented.
On the policy level, it is a democratic imperative to involve stakeholders of central importance, and a requirement as per the CRPD article 4.3. 51The inclusion of persons who need decision-making support should also lead to better policies; their opinions are critical for evaluating and formulating polices aimed at increasing their right to self-determination, and as this study shows they do have a lot to say.Policymaking and policy evaluation processes should also include the interests of those with the largest support needs, who are, as shown here (main finding 3), dependent on strong supporters who advocate for their interests and speak up on their behalf.
Replacing guardianship with supported-decision making is by no means an easy task.Finding and making the right decisions based on the preferences of persons who may not be able to explain their wants and needs in different cases will remain an intrinsic challenge.However, the huge gap between the ideal (the stated aims of law and policy) and the practice (the actual situation) revealed in this study indicates that the gradual reform of the current guardianship system needs to be intensified if Norway is to be human rights compliant.
This study has also demonstrated some of the benefits of studying the two policy fields of guardianship and social care together.The link the interviews exposed between selfdetermination and health underlines the importance of treating self-determination, health, and social careand related policy fieldsholistically.Policymakers should be aware that depression and aggression may be a result of a person's limited abilities to make their own decisions.Social carers should understand that improving an individual's abilities for self-determination is a means of avoiding negative health consequences and forcible treatment.Policymakers and those working in services for people with disabilities should be aware of the core principle of self-determination and the interdependency of human rights in general.
Another benefit of studying multiple policy fields in combination is that it may reveal whether the different policies create synergies or clashes.As persons who need decisionmaking support generally have difficulties filing complaints and stating their opinions, it is important that the authority of one type of service provider can be contested by others. 52Both guardians and social carers are supposed to protect individuals' right to self-determination, yet have different tasks; the involvement of the two professions could thus work as a system of checks and balances, but this was not seen to be the case.Although one task of guardians is to ensure individuals' rights, including making sure they receive the assistance and care needed, having a guardian did not lead to sufficient social care.In at least two of the cases, the guardians were a clear impediment to the person's self-determination (in one case trying to control everything the person did, and in another not listening to the person's preferences regarding guardian and doctor).The social carers knew about these situations but did not seem to have reported them to the guardianship authorities.
In Norway, guardianship and social care are regulated by two different laws and two different ministries, as is the case in many countries around the world.This may mean that actors in one field have limited knowledge of and even shy away from confrontations with actors in the other fields, out of respect for the authority of different professions.Protection of the right to self-determination should be understood as indispensable to both policies, however, and the human rights of those dependent on support should be the primary concern.
Michael Larkin, Simon Watts and Elisabeth Clifton, 'Giving Voice and Making Sense in Interpretative Phenomenological Analysis' (2006) 3 Qualitative Research in Psychology 102.
44WM Finlay and E Lyons, 'Methodological Issues in Interviewing and Using Self-Report Questionnaires with People with Mental Retardation' (2001)13 Psychological Assessment 319; Angela Irvine, 'Conducting Qualitative Research with Individuals with Developmental Disabilities: Methodological and Ethical Considerations (2010) 38 Developmental Disabilities Bulletin 21; KA Shogren and R Broussard, 'Exploring the Perceptions of Self-Determination of Individuals with Intellectual Disability' (2011) 49 Intellectual and Developmental Disabilities 86.