Nordic examples on individualised support

Denmark

The municipalities have the main responsibility for support for persons with disabilities, according to the Act on Social Services, Loven om social service. The law is a framework law, and the municipalities decide the level of service. A service plan is to be drawn up for each matter. The purpose of the support is to enhance the individual’s capacity to take care of themselves, make the daily way of life easier and to improve the quality of life.

In § 96 in the legislation on service the support is regulated in the form of personal assistance, Borgerstyret personlig assistance (BPA) (“citizen-led personal assistance”). § 95 regulates the right to support at home in a personalised arrangement. Both forms of support may be given as cash support. Both forms of support concern those who receive support for more than 20 hours per week and are at least 18 years old. BPA is granted as an allowance for covering costs for assistants taking care of, supervising, or guiding a person with broad-spectrum and permanent physical or intellectual disabilities in need of support, which makes it necessary to provide special support. To be granted BPA the recipient must themselves act as an employer for the assistant. The recipient may come to an agreement with a near relative, an association or a company on transferring the benefit and employer’s duties to these (§ 96 chapter 16 in the Act on Social Service). The purpose of cash benefits to employ assistants is to create a basis for flexible solutions based on the recipient’s self-determination. Citizens who can and want to receive benefits to employ assistants themselves are offered a solution that can be adjusted to their own wishes and needs. The purpose is also to create a possibility for uniform support for persons with extensive disabilities. Also, persons without extensive needs can be offered the possibility if the municipality deems that BPA is the best method for providing a uniform support for them. In order to receive personal assistance, the person must be at least 18 years old. For minors the parents can be granted compensation for loss of income if they leave the job market to take care of a child with extensive and permanent disabilities. The condition is that it is deemed necessary and that it is most practical that a parent takes care of the child. The compensation is based on the parent’s income at the time they left the regular job market, and the compensation is capped at DKK 29,918 per month (2017).

Everyone is responsible for their own health, but the welfare state has a responsibility to provide reliable services. The welfare system is about safety and ensuring good living conditions.
Hanna Egard, Senior lecturer, Univesity of Malmö

Process for receiving personal assistance

The municipalities make an individual assessment of the individual’s needs based on the purpose of the BPA, which is to create a flexible and uniform support system focusing on the person’s self-determination. After the assessment of needs and the number of hours the individual is entitled to the municipality calculates the amount of the cash benefit. The benefit can at its most cover the actual costs for organising the assistance. The total costs per hour for assistance according to § 95 or BPA can at the most amount to the municipality’s average long-term costs for providing assistance according to § 83, accompanying according to § 97 and substitution and unburdening according to § 84. The cash benefit is confirmed annually but can, however, be adjusted in case of significant changes in the preconditions the assessment was based on.

“The personalised arrangement”

A person with extensive and permanent physical or intellectual disabilities and in need of personal assistance and social services, as well as help or support for necessary practical tasks at home for more than 20 hours a week, may choose a cash benefit for employing the person giving the support. The municipality may in exceptional cases choose to grant the support as social services or to be paid to a close relative who supports the person in full or in part. The personalised arrangement is limited to practical help at home but can be combined with other forms of support in order to cover the need for support outside the home. Examples on support is accompanying to activities outside the home. The municipality may in some cases offer BPA, even if the person is not entitled to it if this is the best way to provide uniform support.

Other support

According to §83 municipalities shall provide personal help and care and help or support with necessary practical tasks at home, as well as meals-on-wheels service. Personal assistance and care can be provided to persons who due to physical or intellectual disabilities or special social problems are not able to perform these tasks themselves. An individual receiving such support has through a so-called free choice the right to choose the provider between the municipality or at least two private providers, §91, chapter 16, Act on Social Services. The person may also choose to decide themselves a person who will carry out the service if the municipality approves and employs this person as service provider, §94 chapter 16, Act on Social Services).

Denmark introduced in 2003 regulations on the responsibility of municipalities to provide all users of homecare the possibility to choose between different service providers. The system gives the right for the person granted homecare to choose another provider than the municipality. Homecare encompasses meals-on-wheels service, service and personal care.

The local government decides on the level of service, requirements on quality and the price level. The municipality is thereafter obliged to approve or come to an agreement with the providers meeting the requirements, or to enter a procurement procedure with 2–5 service providers. A special database for free choice has been established for municipalities to make the quality and price requirements public

Personal budget for socially vulnerable persons

During 2017–2020 four Danish municipalities carried out a trial with personal budgeting for socially vulnerable persons with homelessness, drug use and/or mental problems. Individuals had access to a personal budget amounting up to DKK 50,000 and were able to decide on the use based on their own goals. The budget was combined with social support for 12 months in the form of a support person. Based on the individual’s dreams and wishes a long-term goal at the start of the effort was decided upon together with the support person. The purpose of the project was to increase the individual’s self-determination, rehabilitation and quality of life. The National Board of Health and Welfare has evaluated the projects and, among other things, found that the personal budget has helped individuals to becoming closer to meeting their goals and fulfilling their dreams, but that the decisive factor was not only the personal budget but also the cooperation between the individual and the support person. The individuals and support persons have experienced that the effort has strengthened the alliance and changed the division of roles in the cooperation.

Personal budget for long-term unemployed

Aarhus municipality carried out a trial in 2015–2018 with a personal budget for long-term unemployed. The individual received a personal budget of up to DKK 50,000 to establish their own efforts on the labour market. The individual was responsible for suggesting the destination of the budgeted means themselves and how they would be used for being employed. The purpose was to open up more possibilities than the traditional labour market efforts, to increase the individual’s motivation and that the individual would take ownership and lead themselves to employment. The personal budget was drawn up and approved by a job advisor at the municipality’s job centre.

Free choice of assistive equipment

In Denmark it is the responsibility of the municipality to deliver assistive equipment. The ground rule is that the chosen equipment is the most appropriate and affordable. The municipality may also decide the supplier for the equipment. The individual has, however, the possibility to a free choice of assistive equipment and to choose another supplier than the municipality has chosen. The individual can also choose a more expensive equipment than the municipality but must then pay for the difference. The process is that the municipality evaluates first which assistive equipment the individual needs and is entitled to. If the individual uses the possibility for free choice, they will receive a decision on which requirements and specifications the equipment must fulfil and the municipality’s amount for the benefit. It is the individual’s responsibility to ensure that the equipment meets the municipality’s requirements, which is a condition for the benefit. Although the individual has used own means for the equipment, the equipment is still owned by the municipality. The municipality can negotiate the free choice but not which supplier or assistive equipment the individual should choose. However, the municipality must give instructions on the use of the equipment, if necessary, and if the municipality has knowledge of the equipment. Otherwise, the individual may contact the supplier for support and training.

Finland

In Finland the municipalities have the responsibility for healthcare and social services.

In the 2010s a few trials with personal budgeting were performed in Finland. One of the trials concerned the provision of a service voucher to individuals, more extensive possibilities of choice in different service situations within healthcare and social services. The project on personal budgeting, Avain kansalaisuuteen (The key to the citizenship) and the project Tiedän mitä tahdon (in English: I know what I want) is a part of the trial with service vouchers. The focus of the trials was on the evaluation how an operational model for personal budgeting works and to increase freedom of choice. It was voluntary for the individual to participate in the trials. It was not an easy task to recruit service users for the project since many turned it down. Some of the reasons for this was that individuals were satisfied with the service they had, that the budget was too low and that the use of the budget was seen as difficult and unfamiliar. The participants in the projects expressed that a personal budget corresponded to their needs better than before, increased the freedom of choice, participation, self-determination and flexibility.

Support for persons with disabilities

The support for persons with disabilities is regulated by two laws, Act on Disability Services and Assistance (1987/380) and the Act on Special Care for People with Intellectual Disabilities (1977/519). The Act on Disability Services and Assistance was revised in 2009, partly in order to make the act into a rights law and partly to separate assistance and care.

During 2010–2015 the Disability Policy Programme (VAMPO) was carried by commission of the Finnish government in form of a cooperation between the ministries and other relevant actors. The programme resulted in 122 measures of change identified from 14 content areas. Examples on content areas are independent living, social inclusion and involvement, education and study, work, culture and leisure time, and discrimination encountered by persons with disabilities.

Efforts to reform legislation and the support for persons with disabilities has been ongoing during several terms of government. In 2017 a draft for a new law was presented, the act on special disability services. The law has been circulated for comment and the preparation work is ongoing for new legislation. As a part of the ongoing reform work a work group was appointed which prepared a report with propositions for securing that the new legislation takes into account the inclusion of persons with disabilities in an overall manner.

Personal assistance

According to the Act on Disability Services and Assistance § 8c personal assistance can be granted to an individual with severe disabilities and to an individual who because of a chronic or progressive disability or illness is repeatedly in need of necessary assistance from another person to be able to perform the functions stated in paragraph 1, and when the need of assistance is not mainly due to illness and disability in connection with normal ageing. Personal assistance refers to the necessary assistance a person with disabilities has:

in daily activities,
in work and studies,
in leisure time,
in social activities, and
in maintaining social contacts.

The purpose of personal assistance is to help a person with severe disabilities to make their own choices when it comes to the activities mentioned above, why a prerequisite for the support is that the person can define the content of the assistance and the manner it is to be organised. When it comes to leisure activities, social activities and maintaining social contacts personal assistance must amount to at least 30 hours per month, if not a smaller amount is enough to ensure the person receives necessary assistance, § 8c. An evaluation and assessment is performed by the municipality. According to the Act on Disability Services and Assistance a plan for support and service a person with disabilities needs to be able to cope with daily life is to be drawn up. The goal is that when service plan is drawn up the municipality and the person needing support has an understanding that is as uniform as possible of the person’s ability to function and of the need for support.

There are three models for personal assistance in Finland:

The employer model: a person with disabilities or a guardian of a child with disabilities, or someone else who is the legal representative of the child, is the personal assistant’s employer,
The service voucher model: the municipality gives the person with disabilities a service voucher referred to in the Act on service vouchers in healthcare and social services (569/2009) in order for them to acquire personal assistance,
Service model: the municipality arranges personal assistance services for a person with disabilities from a public or private service provider, or performs the service itself, or makes a service agreement with another municipality or other municipalities.

In 2016 a little under 60 per cent used the employer model, a little under 10 per cent the service voucher model and approximately 30 per cent the service model. In five per cent of the cases the model constituted a combination of efforts.

Norway

In Norway the responsibility for individualised support for persons with disabilities lies within municipalities. Regulating legislation is mainly Lov om kommunale helse- og omsorgstjeneste (The Act Relating to Municipal Health and Care Services) and Lov om pasient- og brukerrettigheter (Act on Patient and User Rights). The overall goal for the act on patient and user rights is to ensure that patients and users receive equal access to healthcare services of good quality. The regulations in the law shall contribute to the promotion of the relationship between the patient and the care recipient respectively and healthcare services, promote social security and protect the individual’s life, integrity, and human dignity. A user has the right to necessary support and valued services from the municipality. Drawing up an individual plan is an obligation for the municipality, as well as to cooperate with other service providers in order to contribute to the overall support for the individual. Those in need of long-term and coordinated services are provided a coordinator by the municipality. The support itself should as much as possible be designed in cooperation with the person being the object of the effort.

Personal assistance

The support municipalities are obliged to provide for persons with disabilities according to the act on patient and user rights may be offered in the form of personal assistance, Brukerstyrt personlig assistanse (user-led personal assistance) (BPA). Originally it was required that the person granted the support could themselves supervise the assistant’s work, but this was abolished in 2005. Thus, BPA also began to include children and persons with cognitive disabilities. In 2015 the law became a rights law. The aim of the BPA is that persons with disabilities with support needs will have as an active and independent life as possible. In order to receive BPA, the person must be under the age of 67, have a long-term need for at least two years and a need for assistance at least 32 hours a week. Persons needing support for 25–32 hours are entitled to the service if the municipality can prove that arranging the support in some other manner will be more costly (§ 2–1). The municipality decides on the organisation of BPA.

User passport

The Norwegian Labour and Welfare Administration (NAV) is responsible for fitting and delivering assistive equipment in Norway. A new system for the delivery of assistive equipment, Brukarpass (“user passport”) was introduced in 2006 with the purpose of simplifying the delivery and fulfilling the user’s needs and wishes better. The passport is an agreement between the user of the equipment and the NAV Assistive Technology Centers and constitutes a power of attorney. With the user passport the individual can choose a cooperation partner for fitting, change of equipment or technical services and repairs. The division of tasks and responsibilities between NAV Assistive Technology Center and the individual is regulated in the agreement and can be changed if necessary. The target group for the passport is experienced users with a good insight of their needs and who want to play an active role in the process. The assistive equipment is included in NAV’s framework agreement and are found in the assistive equipment database. The system was evaluated in 2009 and it was shown that the majority of the users thought that the assistive technology center works better with the user passport, the waiting time is shorter and that they have an increased influence over the choice of equipment. The obstacles are, among other things, that many users do not know the system and that the assistive technology centers do not communicate actively, and that the responsibility for receiving the user passport to a high degree relies on the user themselves.

Iceland

Personal assistance

Island reformed its support for persons with disabilities in 2018 with the introduction of the personal assistance effort in the social welfare law. Assistance was funded earlier in development projects. The reform was prepared for example through surveys and evaluations by the Institute for Social Research and The Centre for Disability Studies at the university of Iceland.

According to the law the individual has the right to user-led personal assistance if they have an extensive and permanent need for assistance and services, for example within daily activities, housekeeping, participation in social activities, education, and employment. This is regulated in the act on services for persons with disabilities with long-term support needs. Article 11 includes user-led personal assistance (BPA).

An agreement is made with a municipality which means that the user manages the assistance they receive so that they can organise it, decide when and where it is given and chooses assistants. User agreements can be in the form of a direct payment agreement where the user is fully responsible for the managing themselves, so-called user-led personal assistance. An external partner, for example a cooperative, can be given the responsibility to employ and be in charge of the administration of the assistance. The most common method of organising personal assistance is through the co-operative NPA-Miðstöðin (BPA Centre). There are also other co-operatives and non-profit organisations administrating the assistance.

The municipalities are responsible for making and implementing BPA-agreements irrespective of how the assistance is organised and who the responsible administrator is. After a concluded relevant assessment of the need for assistance according to the rules determined by the municipality in question, the user and the municipality conclude an agreement in writing on the value of the agreement and the number of available work hours. The scope of the granted assistance hours is based on an assessment of the level of assistance the user needs to live a full, meaningful, and independent life, irrespective of their disabilities.

In Iceland 96 persons have a BPA agreement (2021). However, according to the Icelandic Disability Alliance, the umbrella organisation for disability organisations, there are a long line of applicants. A survey of NPA against the background of experiences will be conducted in 2021. The survey comprises current legislation, rules and the service guide. The work is expected to be completed at the end of 2021.

Personal budget

In the municipal service law (Lög um félagsþjónustu sveitarfélaga 1991) paragraph 28 was introduced in 2018 stating that municipalities can provide support to users and control support and services for individuals and families with children in the form of user agreements for a personal budget with free choice of services for the individual or families.

Sweden

Personal assistance

Personal assistance is in Sweden one of the ten support and service efforts available in the Act concerning Support and Service to Persons with Certain Functional Disabilities (LSS), introduced on 1 January 1994. The goal with the effort is that the person can “live like others” in the community and have “good living conditions”.

The responsibility for personal assistance is divided between the municipalities and the state-owned Försäkringskassan (Swedish Social Insurance Agency). If someone needs help with the needs listed in the law for more than 20 hours a week the Försäkringskassan has the responsibility to assess and pay out assistance compensation. If the need is less than 20 hours per week the municipality is responsible for personal assistance.

The compensation for assistance is an economic support effort for covering the costs for personal assistance to a person with severe disabilities. This is regulated in the Socialförsäkringsbalken (Social Insurance Code) (2010:110). In order to receive governmental assistance compensation from Försäkringskassan the person needs to be included in one of the personal circles in LSS. The person must also have a need for assistance for more than 20 hours per week with six needs established in the legislation: breathing, personal hygiene, eating meals, dressing and undressing, communication with others or other kind of help requiring in-depth knowledge of the person. Those needing personal assistance for their fundamental needs have also the right to personal assistance for other personal needs if the needs are not met in another manner.

Persons using assistance can choose to employ their assistants themselves or let the municipality, a company or a cooperative arrange the assistance. If the individual is not satisfied with their assistance, they can change assistants or the organiser of their assistance.

In order to apply for personal assistance from Försäkringskassan the person needs to be included in one of the personal circles in LSS. The three personal circles are:

Personal circle 1: Persons with intellectual disability, autism, or autism-like conditions.
Personal circle 2: Persons having a significant and permanent intellectual disability because of a brain injury in one’s adult life due to external violence or a bodily illness.
Personal circle 3: Persons with other permanent physical or intellectual disabilities that are not due to normal ageing. This is applicable if the physical or intellectual disabilities are significant and cause considerable difficulties in the person’s daily life and the person therefore has a considerable need for support or service. Significant difficulties in the person’s daily life can include needing assistance with dressing, cooking, transport, or communication with the community.

Systems of choice in the social sector

The Act on Systems of Choice (LOV) entered into force on 1 January 2009. According to the proposition the law is a part of the efforts towards putting the user in focus, the transfer of power from politicians and officials to citizens, increased freedom of choice and influence, as well as an increase in the number of providers and a broader diversity. Through the increased user influence also increased the quality of services. (Prop. 2008/09:29 s. 54).

LOV is a procedure law with regulations on what to do when introducing a system of choice. The law does not determine which requirements are to be set for the service providers and how the system of choice should be developed. The law is applied to municipalities and regions when introducing systems of choice for healthcare and social services. It is voluntary for the municipalities to introduce systems of choice but compulsory for primary healthcare regions. Services included in the systems are, among others, social care for persons with disabilities such as group homes, personal assistance, and daily activities. The law regulates the rules for municipalities and county councils wanting to organise a tender competition for municipal and regional operations by transferring the choice of provider for support, care and social services to the user or patient.

A system of choice includes three parties

The municipality that grants the service, approves providers, and monitors and evaluates that the provider meets the requirements for quality
The individual who chooses the provider or a new provider if they are not satisfied with the current one.
The provider competing through quality or profiling. The provider can be a municipal body or a company.

In a system of choice, the individual can choose only between the providers the municipality has procured and has concluded an agreement with. For individuals who cannot choose, or do not have next of kin who can help them with the choice, there should be an alternative of no choice, which is to be selected in a competition neutral manner. If only one provider is selected to be the alternative of no choice, this should be carried out through a method according to the Act on Public Procurement in order to secure competition and competition neutrality.

Evaluations

The Act on Systems of Choice has been evaluated by The National Board of Health and Welfare in 2012. The focus has above all been on the choice of health centres and homecare providers. Here are some of the conclusions:

In order for the individual to be able to change provider there must be several providers to choose from. The individual must also be coping and have the ability to act as a customer on the healthcare and social services market or receive help doing so.

The majority value and want to have the option to choose homecare providers and the health centre, especially within elderly care and healthcare. In some municipalities, or rather parts of municipalities, there are a very large number of service providers. The individual can then experience difficulties in choosing the provider, although having a positive attitude towards the freedom of choice per se.

Well-informed choices require the citizens receiving easily available information on the quality and efficiency of different care units. In this respect the information supply is very limited. It seems that the service providers have also not found any adequate forms for marketing themselves.

A surveyor was appointed in 2012 for carrying out analyses and evaluations of the effects of the introduction of systems of choice within social services. According to The survey on correct information within healthcare and social services (SOU 2014:2) 181 of the country’s 290 municipalities (2013) had introduced or decided to introduce systems of choice within one or more operations. The most common area is homecare. The number of service providers has increased significantly and a little more than 70 per cent provide profiled services where language is the most common profiling. Of the 846 private providers included in the survey 83 were providers connected to daily activities. Daily activities according to LSS are aimed at persons of working age but who do not have a gainful employment and are not studying. Daily activities were the activity having the largest profiling variation. Examples on offerings are carpentry, gardening, different kinds of animal husbandry, culture, dancing, different forms of therapy, practical training, music, therapy forms and companies with special competence in different forms of disabilities. Only a small part of the municipalities that published query results as a base for systems of choice was related to activities aimed at persons with disabilities. In other efforts, such as group homes according to LSS, the number of municipalities was 1–8. The most common part of social services where systems of choice have been introduced is homecare. According to the survey one of the reasons for this is that the investment costs compared to other areas are relatively low. Most of the costs are variable costs and comprise of personnel costs which makes it relatively easy to become established on the homecare market.

The survey also investigated in which areas LOV should be extended to, for example housing for persons with disabilities. This was deemed to be more complex than for other areas and would pose more requirements for the municipalities. This would also require large investments from the provider and limited possibilities for the user to rechoose.

Free choice of assistive equipment

A stronger right to choose assistive equipment was introduced in 2014 in the Health Care Act (1982:763) and in the Patient Act (2014:821). The motivation was to give the individual larger opportunities for influence (Prop. 2013/14:67). A part of the increased opportunity to introduce assistive equipment was the introduction of the so-called Free choice, a model in addition to the traditional prescription of assistive equipment (Prop. 2013/14:67). Some county councils had since 2007 pursued a trial with the support of governmental stimulus funding. Free choice means that the user of the assistive equipment can buy equipment outside the operator’s procured offering of assistive equipment based on a given order figure. The user of the assistive equipment can use their own means to pay the difference in excess of the amount of the order to get more expensive equipment. This makes the user of the assistive equipment the owner of the equipment and in charge of its service. However, a service account is often used with a certain sum of money for equipment needing more extensive service.

The motivated purpose of the model is that it would increase influence, participation, and freedom of choice within the area of assistive equipment. An evaluation of the model carried out by the National Board of Health and Welfare (2016) concluded, however, that the model has not led to increased participation.The surveyor of the National Board of Health and Welfare states in the evaluation report and the life cycle impact analysis of free choice of assistive equipment that:

The free choice of assistive equipment requires that there is a diversity of suppliers of assistive equipment on the consumer market which is not the case. The model requires also that the user of the equipment has access to independent consumer guidance which to a large degree is lacking at the moment. This makes it more difficult for the user to make an informed choice. (National Board of Health and Welfare (2016), p. 7)

It is noted that the number of users receiving assistive equipment through freedom of choice is small, with the exception of hearing aids. The reason for the low use of freedom of choice in other areas of assistive equipment is thought to be that those prescribing assistive equipment do not to a large degree inform of the possibility and that the demand is low among the users. The hearing area being dominating is explained by economic incentives for audiometric offices to promote their own products. The audiometric technicians have a double role, partly as caregivers and partly as hearing aid sellers.

The model has received criticism, among other things, from The Swedish National Council on Medical Ethics in the report Co-payment and out-of-pocket payment in public health care – ethical aspects, where the council states that co-payment contradicts the intentions of the Health Care Act – that good care is to be given on equal terms. Also organisations within the disability movement have expressed criticism, and for example the National Association for Hearing Impaired People has stated that hearing care has become a ruthless business, more expensive and of poorer quality for individual hearing impaired people.

The Equality Commission states that the model has equality problems, that private caregivers have economic interests to choose a certain alternative. The Commission proposes instead a solution where only an employee of the region may give out the assistive equipment and give neutral information. If private caregivers are used, they must not have a connection to a certain producer of equipment (SOU 2020:46).

Personal representative

A personal representative is a form of support for persons with intellectual disabilities who need help with influencing their situation in life and to be able to participate more in the community.

Personal representatives were introduced in 1995 when ten municipalities in the country received the possibility to carry out trials with personal representatives for three years. Personal representatives were one of the propositions in the psychiatry reform (Prop 1993/94:218), which was supposed to lead to an improvement of the living conditions for persons with intellectual disabilities.

The representatives act as support in contacts with the authorities, caregivers and other actors the individual needs to be in contact with. Using personal representatives is aimed at persons with intellectual disabilities and considerable and essential difficulties in performing activities in different areas of life. To be entitled to a personal representative a person must be 18 years old or older, and have extensive care, support and services, rehabilitation and employment needs. In addition, the person must have a need for long-term contacts with social services, primary health care and specialised psychiatry and other authorities. Such persons are for example those who in addition to an intellectual disability have an addiction problem.

Personal representatives are managed by the municipalities and are partly funded by the government, the National Board of Health and Welfare and the provincial government. A decree on government grants to municipalities managing personal representatives entered into force on 1 August 2013. The decree regulates the operations, purpose and tasks. The decree also regulates the conditions for receiving government grants.

Coordinated support for parents to children with disabilities

Parents to children with disabilities are often obliged to take on a big responsibility in coordinating and administering the support the child needs. The number of contacts and the related work can be extensive and strenuous. To ease the situation for the parents initiatives have been taken to improve the cooperation for the child’s support. The Swedish NAO proposed in 2011 trial operations with certain cooperators to help families and ease the cooperation with the actors involved. The National Board of Health and Welfare presented in 2017 a cooperation model in the form of knowledge support. The model is expected to increase children’s access to functioning support and reduce the parents’ workload. The knowledge support presents organisational and practical success factors in the efforts to develop the coordination.

Faroe Islands

In the social legislation of the Faroe Islands there is a “system of choice” but no legal grounds for “personal budgeting”. The system of choice includes the authority to grant support efforts for purposes that do not require professional competence – healthcare and practical help, as well as night shifts. The recipient has the decision-making competence in relation to who is the employee and how and when assistance is given if the recipient has the cognitive competence to make the decision and manage the system. The person in question is, however, employed and paid by the Almannaverkið (social administration). The legislation is new and is to be based on Article 19 in CRPD.

Other issues

Institutions

Despite the Nordic countries closing institutions early on in accordance with the CRPD requirements, there are still many institutions and institution-like forms of housing in the Nordic countries. This is also something that has been criticised by the CRPD committee.

For example, in Norway a problem is that the support for persons with disabilities is to a high degree still connected to housing and therefore becomes a package solution. Also, the support in private alternatives is to a high degree standardised with little possibility to individualisation (NOU 2016:17). In Sweden children have lost their right to assistance, which has for example led to that children to a larger extent have been granted housing.

Competence

A question that has been raised in the discussion about quality is competence and the education level of the personnel groups working with support and service. In Norway 60 per cent of those working with social services or housing for the elderly and persons with disabilities have an education level corresponding to comprehensive school or upper secondary school (videregående skole) as their highest education (NOU 2020:13). In other groups a university degree was more common. The National Board of Health and Welfare in Sweden presented in 2021 a national survey of the competence of personnel working in housing with special service according to the Act concerning Support and Service to Persons with Certain Functional Disabilities, LSS. The report shows that only 38 per cent of the personnel with permanent employment in LSS housing for children and young people have a basic education in healthcare and social services from a upper secondary school or the municipal adult education. In housing for adults, the share is 64 per cent. Even less, about 8 per cent, of permanently employed at housing for both children and adults have graduated from the Child recreation programme. The access to competence development is also limited. This can, among other things, be a result of lack of resources or available education and to the fact that planned education has been cancelled due to the pandemic. FUB, The Swedish National Association for People with Intellectual Disability, has for a long time required increased competence among the personnel and stated that there are big risks involved with uneducated personnel, causing for example an increased risk for violence. In an interview for Radio Sweden, Eva Borgström, who works for FUB, says that:

“It is a question of not having enough knowledge of intellectual disability and autism. There is a lack of knowledge of how to communicate in the manner the residents do. All this, when the competence is lacking, the risk is that it leads to that a person living in the group home and feels that they are not understood by the personnel may react by getting angry or maybe hurt themselves. And in the worst case it may lead to the personnel resorting to violence or threats. This is of course forbidden but the risk increases if the personnel does not know how to do their work correctly.” (Radio Sweden, 2019)

The authorities are also planning to develop knowledge support about communication, directed to LSS activities. In addition, the authorities are also of the opinion that there is a need for perseverance and sustainability in the access to education and competence development for personnel in LSS housing.

Welfare technology

Extensive investments on welfare technology have been carried out in the Nordic countries during the last few years. The concept has not a uniform definition in the Nordic countries, but the Swedish National Board of Health and Welfare states that welfare technology refers, among other things, to ”digital technology aiming at maintaining or increasing safety, activity, participation or independence for a person who has a disability or is at high risk of becoming disabled”. In Denmark and Norway, the concept is broader and includes also assistive equipment. Examples on solutions are safety alarms and robots. An important reason for the development is the challenges faced by the welfare sector involving increased needs, especially due to the demographic development and the possibilities for recruiting personnel. New technology can increase efficiency and productivity. Arguments put forward also include an increase in the individual’s self-determination and participation. The Norwegian survey Velferdstjenesteutvalget states in the report NOU 2020:13 that new technology means that the individual themselves becomes their own service provider, faster and better. The individual can then make their own choices and the service provider becomes an adviser and partner.

Coordination

Coordination is generally one of the big challenges in the welfare system with extensive simplified thinking. Persons in need of several different efforts from different actors are in risk of receiving fragmented efforts, and the individual or next of kin often takes on a large responsibility for the cooperation of efforts. There are a number of methods for creating an entity and coordinate welfare services, such as an individual plan, cooperation agreements and coordinator. But there are still shortages. Norwegian municipalities have for example an obligation to draw up an individual plan for users in need of long-term and coordinated efforts. Despite this, a small number of persons with disabilities have an individual plan (NOU 2016:17).

Guidance

As the possibility to choose service or other efforts websites with information for example on service providers have been developed. Examples of such websites for personal assistance are BPA-portalen and Assistanskoll. For choosing assistive equipment there are examples such as organisations developing their own guidance service, such as Hörsellinjen or where more experienced persons with disabilities of their own provide support to persons with less experience, such as HLF Likeperson. In social media and discussion groups many individuals are sharing their experiences to others in the same situation.

User surveys

One method for clarifying the individual’s and next of kin’s view of the activities and services they use is through user surveys. The Swedish Agency for Health and Care Services Analysis presented in 2020 a study on the in the Nordic countries, which shows that there is limited knowledge of the social service from the user’s perspective. The knowledge gaps are therefore extensive. The area studied the most is the elderly care and especially the users’ experience and satisfaction with the care. The authority’s view is therefore that there is a need for a more extensive Nordic cooperation in user surveys and states several suggestions in the report.