The National Institute on Intellectual Disability and Community (Norwegian acronym NAKU)
The White Paper No. 40 (2002-2003): Removing Disabling Barriers recommended establishing a National Institute on Intellectual Disability and Community in Norway as a tool for securing good living conditions for people with intellectual disabilities.
The report mentions the following challenges:
- Municipalities face great challenges when they try to recruit staff who can support people with intellectual disabilities in their daily lives and enhance the competency of the staff members.
- It is important to establish contact with the people responsible for planning as well as providing services in the municipalities, in order to convey knowledge of how living conditions and services can be improved.
- It is necessary to build a good range of services for intellectually disabled people who have mental disorders and/or serious behavioural disorders.
- Each municipality must accommodate the need for user participation and individually tailored services for people with intellectual disabilities.
- Additionally, there are challenges associated with the social life and personal network of people with intellectual disabilities.
- Arrangements must be made to allow for a more active and varied leisure time.
- It must be ensured that disabled people who have adequate abilities to work, have opportunities to participate in ordinary work life.
The Value of a National Competence Community
In a 2005 report, the Directorate of Health and Social Affairs described the potential value created by a national competence community for the disabled. The report states that:
- It is important to establish an Institute on the National level
- The Institute will be a separate organisational unit, but may independently initiate and operate competency networks in various fields of interest.
- Main focus of the Institute will be issues regarding living conditions as well as the quality of services for people with intellectual disabilities
- Target groups for the Institute are primarily the various professionals who are working in the services organised by the municipalities, but also take a wider perspective on issues regarding living conditions for people with intellectual disabilities. This involves close cooperation with national health and social services and other state authorities. The need for task coordination implies that the Institute must be able to collect and distribute data and information across the boundaries of the various services.
- The Institute will promote competency enhancement about persons with intellectual disabilities in a life course perspective
- The Institute will deal with issues related to persons with a slight to moderate degree of intellectual disability, as well as those with a severe and profound intellectual disability. The target group also includes people with additional problems, which often involve complex life situations. It is important to focus upon transitions through various phases of life and to be able to shift focus as time passes onto new tasks and issues.
- The Institute will focus on developing competence as well as imparting knowledge
- The legitimacy of the Institute is closely linked with its proficiency regarding the main problem areas of the target group.
- The Institute must obtain and develop proficiency in close cooperation with careers and service providers, specialist health services, research communities a specialised centres of competency
- The Institute must have a sound knowledge of how to convey information in a result-oriented manner, using modern tools, especially when transferring information to service providers in the municipalities.
The primary target group for the National Institute is service providers and staff in the municipalities.
The core activity of the Institute
The Institute will constitute a national, professional hub that possesses an overall overview of available knowledge, which may contribute to improve the quality of services and living conditions for persons with intellectual disabilities. The two key elements, excellent services and good living conditions, may be interpreted as follows:
Good living conditions:
- Full participation and equal opportunities.
- An all-inclusive society.
Excellent services imply correct as well as adequate services. Correct services require that the service providers have the necessary knowledge about the relevant types of services available within their field. The service providers also need to possess an up-to-date and professionally founded knowledge about the services selected.
Furthermore, excellent services involve the users and utilize resources, in addition to being effective, safe, secure, well-coordinated, characterised by continuity, available and justly distributed (The Directorate of Health and Social Services, 2005).
The provision of health and social services always involves some degree of caring and social work, which will vary according to the type of services. Consequently, service provision include many of the same aspects that are used to describe caring and social work in a thesis by Rønning in 1992, namely an emotional aspect, an action-related aspect, a relational aspect and a moral aspect, which must all be balanced.
In order for the knowledge and competence conveyed to contribute to securing excellent services and good living conditions for disabled people, they must help shed light on the correlation between the elements, as well as promote action-based competence in step with such knowledge.
The Institute will:
- Develop a knowledge pool regarding good living conditions and services for people with intellectual disabilities.
- Develop methods for transferring competence to and from the municipalities.
- Stimulate and contribute to the implementation and accomplishment of development work in areas that may be important to creating good living conditions for disabled people.
- Act as a path finder and driving force for both national and international challenges regarding good living conditions for disabled people.
- Promote the opportunities for disabled people to obtain full participation and self-determination in society
Norwegian Directorate of Health, report 2007: Summary
The responsibility reform act for persons with intellectual disability – which was implemented in January 1991 – transfers to the municipalities the responsibility for providing accommodation and services to the approximately 20 000 individuals diagnosed with intellectual disability in Norway.
The objective behind the reform was to phase out institutional care and promote a process of normalization in which persons with intellectual disability would get the opportunity to lead as normal lives as possible. Ten years after the reform a study revealed a certain degree of normalization and improvement in the living conditions of persons with intellectual disability. This applies to individuals with intellectual disability who currently live in their own decent apartments, attend kindergartens and schools in their neighbourhood, receive services from the municipal service providers, participate in work/activities as well as local leisure activities.
Other studies focussing on the health condition of persons with intellectual disability before and after the reform indicate that the current conditions are not satisfactory.
This report attempts to give a description of the current situation. At the same time, the report asks whether we have moved a step closer to achieving social participation and inclusion.
Kindergartens have been, and still are, one of the most important arenas of integration. But the trend has been to concentrate children with special needs to certain kindergartens where the required educational assistance is available.
When it comes to the organization of before- and after-school care this varies from municipality to municipality and surveys indicate significant differences in terms of quality and price. Manneråk 5+ claims that the trend is negative rather than positive when it comes to general educational issues for persons with intellectual disability. There are currently no studies to illuminate how this specifically affects persons with intellectual disability. The report also indicates increasing segregation, which could be due to the elimination of regular classes. The number of pupils receiving special education has declined over the last 10 years whereas the number of segregated training schemes has risen. Such schemes are usually organized in groups or special educational facilities.
The approximately 5250 individuals with intellectual disability living in institutions at the beginning of the reform period have all moved into their own homes. Mostly this involves community-based housing in municipal apartments. Even if the living standards are reasonably high most persons with intellectual disability live in apartments that “stand out”. The ambition that the apartments should be normal housing units in ordinary neighbourhoods has too often been disregarded. In addition, many of the tenants have practically no influence on who they share accommodation with, something that could lead to unrest and conflict. Among intellectually disabled persons only a small number have their own private homes whereas several others have been warned that their services will be discontinued in case they move into private housing units. However, there are examples that it is possible to live in a private home while coping financially and receiving the required services.
Another problem is that construction of municipal housing units has not kept pace with the number of persons with intellectual disability aspiring to live on their own, with the result that many individuals within this group has been forced to remain in the homes of their parents/relatives even after reaching adulthood. A focus on accommodation for this group of people is therefore required.
Accommodation and services for intellectually disabled people may seem to represent the same issue. However, this is debatable as it serves to promote institutional thinking among service providers who sometimes tend to forget that they carry out work in the home of another individual. In community-based housing with services available 24 hours a day problems often occur as result of the large number of staff members employed in part-time positions. Some municipalities have been able to solve this by using shift work modelled on the oil industry. Here, the staff members will work continuously for one week and then have 2 or 3 weeks off, depending on the organizational structure.
Accommodation for children is on the rise and the failure on the part of certain municipalities to distinguish between relief and accommodation for children is problematic. Another problem is that adolescents keep living in such housing units after the age of 18 and that the age difference between the children becomes too big. The size of the housing units is also variable and some of them resemble institutions.
Measures like Accommodation for children should be evaluated in the context of the new act on health and social affairs.
When it comes to holiday and free time activities we currently lack sufficient knowledge. A survey carried out 10 years after the reform indicated that free time is the thing that has been most negatively affected by the elimination of institutional care. Later surveys have not been able to produce a clear picture of the situation but confirm that this area needs to be examined more closely and also be subject to a more concerted effort.
A more recent study regarding work for people with intellectual disability shows that only a limited number within this group experience a job situation in which they represent an integral part of a work environment. Most of them spend their days within a municipal day care centre or in an organization that offers “permanent adaptation initiatives”. According to figures from the Norwegian labour authorities, about 1300 persons with intellectual disability work at ordinary workplaces or in companies that receive some kind of subsidy. Less than 1 % works in an ordinary company without relying on public support measures. Just a very small number enjoy something that resembles ordinary wage conditions. They continue to receive disability benefits beside a symbolic wage.
In the area of transportation we do not have sufficient knowledge and we need studies specifically relating to people with intellectual disability who have special requirements for transportation in order to be able participate in work and free time activities.
When it comes to personal finances there are significant differences with regard to who receives disability benefits. The share is far less among those diagnosed with intellectual disability than among those diagnosed with child autism and Down’s syndrome. The reasons for these discrepancies are not known and it could be fair to ask if people with intellectual disability who do not have a specific diagnosis have received sufficient assistance when applying for health-related benefits.
Today, persons with intellectual disability live longer than in the past. For instance, the average life expectancy for people with Down’s syndrome has increased by 40 years from 1930 to 1980, and the average life expectancy is currently 56 years. This implies a challenge both with regard to skills and service provision.
Services: Available studies within the area of services indicate that the municipalities have failed to adapt the services to the changing requirements of persons with intellectual disability. Among other thing, there is a lack of documentation regarding individual assessments, key decisions are not reached, decisions are not sufficiently substantiated and evaluated, and staff members have not been informed about the decisions (reports from the Norwegian Health Authority). The county governors also conclude that user involvement and individual assessments is at an unsatisfactory level. The specialist health services lack the desired quality, availability and skills.
A report from The Norwegian Directorate of Health concludes that more knowledge is required to establish how the services address the needs of persons with intellectual disability. An effort from the municipalities is also needed in order to better protect the legal rights of service recipients. Otherwise, the demand for assistive technology proved to be less than expected. This is related to the fact that knowledge about the opportunities of persons with intellectual disability is insufficient. According to the assistive technology centres, the demand for cognitive assistive technology for persons with intellectual disability has declined. There is an urgent need to get a clearer picture of the situation.
All available studies indicate a general lack of user participation when it comes to persons with intellectual disability. Responding to Report to the Storting no. 40 (2002-2003), The coordinating council for work for persons with intellectual disability (SOR) has been able to make some contributions. The municipalities and service providers still have the greatest challenges in this area.
With regard to allocation and implementation of services this has already been discussed in the section above. In its reviews from 2003, 2005 and 2006, The Norwegian Directorate of Health has pointed out that there still are numerous cases of non-conformance with respect to allocation of services as well as individual assessment, decisions, documentation, etc.
The Social Services Act allows for the use of force and coercion in extraordinary situations. In 2005 the county governors identified cases of non-conformance in 41 out of 53 municipalities. In 2006, non-conformance was identified in 44 out of 59 municipalities. The high level of non-conformance was mainly due to the use of force and coercion without proper decision making and the lack of internal supervision when following up notifications in cases where damage-preventing measures were applied in emergency situations. The review also exposed shortages and inconsistencies with regard to the service-providers’ understanding of coercion as a concept. A number of the municipalities have failed to provide a satisfactory degree of training.
The Norwegian Directorate of Health has demonstrated that the municipalities have great challenges when it comes to developing defensible administrative procedures as well as organization and quality control of the services. There are also major challenges in the area of training.
The experiences with the Social Services Act, Chapter 4A, regarding the use of force and coercion was evaluated by Nordland Research Institute in 2007.
Conclusion and follow-up measures
One of the main conclusions is that we still lack knowledge within the areas of living conditions and services. Several studies have had a general focus on people with developmental disabilities and not on persons with intellectual disability as a separate category. Future research should for this reason have a particular focus on people with intellectual disabilities, albeit with the possibility of making comparisons with other population groups with developmental disabilities.
One of the main priorities should be to disseminate skills to those who provide services for people with intellectual disabilities, and this should be done on a broad basis.
There are also reasons to consider the various services in order to ensure that they are carried out in accordance with the intentions on which the reform was based, i.e. to promote social participation and inclusion.
A number of the proposals evident in the Report to the Storting no. 40 (2002-2003) have already been implemented and are mentioned in the separate chapters.