Norway

Until the beginning of the 1990s, services for people with IDD, such as special needs education, care and housing, were the responsibility of 19 (now 11) county municipalities or administrative regions. Helsevernet for psykisk utviklingshemmede (Health Service for the Mentally Handicapped or HVPU) was a public care scheme for people with IDD organised by the county municipalities.

The increased focus on values such as normalisation and integration, combined with criticism of the living conditions in the HVPU and coercive practices (Norges offentlige utredninger (NOU) 1985: 34 (1985)), saw responsibility for these services transferred in 1991 to 450 (now 356) local municipalities. However, as set out in the Salamanca Statement on Special Needs Education (UN 1994), the concept of integration was replaced with inclusion. Other services for people with disabilities in Norway soon followed (NOU 2001: 22 (2001)).

Today, inclusion is central in Norwegian policy and decision-making in welfare services and education. The processes facilitating social inclusion are based on a relational perspective of the individual’s reduced functional ability. This relational perspective is called the gap model (NOU 2001: 22 (2001)): the individual has their way of life significantly limited because of the ‘gap’ between their reduced ability to function and the demands of the environment and society.

In the same vein, the gap model refers to the concepts of accessibility, anti-discrimination, equality and universal design, concepts that are recognised and accepted in Norway as central in community planning in general and services for people with disabilities specifically. Although the UN General Assembly adopted the UN CRPD on 13 December 2006, Norway ratified the convention on 3 June 2013, with work ongoing since then to meet its requirements.

While inclusion is central in policy and decision-making, recent evaluations of kindergarten, school and after-school care have found that many children with IDD are separated from their peers, with low expectations of achievement (Norwegian Ministry of Education 2019). In healthcare services for people with IDD, evaluations, from ministries and directorates, have identified lack of self-determination, reduced legal security, lack of coordination of welfare services, lack of goal management, coordination and implementation, and a lack of statistics and documentation (NOU 2016: 17 (2016). Norway still has some way to go to ensure that social inclusion for people with IDD is a reality.

Romania

The issue of social inclusion in Romania can be understood from a historical perspective. During the communist period (1948-1989), there was a desire to impose a model of the ‘new socialist man’, a utopian representation of a selfless life dedicated to the development of society. Although significant investment was made in education and mass literacy, educational projects were strongly ideologised and the emphasis was on general development (Kiss 2013).

After the fall of the communist regime in 1989, services for people with disabilities had to be reconstructed from scratch with the support of the UN Children’s Fund (UNICEF), US Agency for International Development, the EU and western non-government organisations (NGOs). Romania ratified the UN (1989) Convention on the Rights of the Child in 1990, established the National Authority for Persons with Disabilities in 1990 and the Departments for Social Assistance and Child Protection in 1997. In 2003 Article 50 was added to the Romanian Constitution of 1991 regarding the protection of people with disabilities (Chamber of Deputies 2020). Finally, the national inclusion strategy for children with disabilities was initiated in 2005 (Ghergu 2005).

In 2018 in Romania there were more than 700,000 beneficiaries of special social protection (4% of the Romanian population) (Autoritatea Naţională pentru Persoane cu Dizabilităţi [National Authority for Persons with Disabilities] 2018).

In terms of social inclusion, there are family placement strategies (familial custody of abandoned children until the age of 18) and residential institutions, either state-financed or private, following a family pattern for abandoned children and adoptions. In education there are inclusive schools, special schools for children with severe disabilities and schools for pupils with sensory disabilities. For adults with IDD, work inclusion services include fiscal facilities for hiring companies and adapted work conditions (sheltered workshops).

Most of the policies in Romania focus on avoiding institutionalisation. However, there is a lack of resources to implement adequate inclusive strategies in schools. The private sector and NGOs compensate the state-financed services. The focus is mainly on children and adolescents up to the age of 18 and there is a lack of services for adults.

Poland

Since the transition from communism in 1989, Poland’s approach to people with IDD has been influenced by western policy, for example the UN (1989) Convention on the Rights of the Child and, since the country became a member state of the EU in 2004, the EU policy on equal treatment in employment, social affairs and inclusion (European Commission (EC) 2020). The UN (2006) CRPD (Polish Forum of People with Disabilities 2020) has had the greatest effect on policy implementation. It emphasises the right to an independent, autonomous and active life, with no form of discrimination. It includes the rights to:

The Polish Constitution of 1997 (Sejm 1997) prohibits discrimination on any grounds and requires public authorities to ensure special healthcare for children and people with disabilities (Article 68) and provide aid to people with disabilities to ensure their subsistence, adaptation to work and social communication (Article 69).

Article 72 of the Constitution protects the rights of the child against violence, cruelty, exploitation and actions that undermine their moral sense (Sejm 1997). It also requires the appointment of a Commissioner for Children’s Rights, a government minister responsible for providing special care and assistance to children with disabilities and their families.

The Act on the Education System 2004 entitles children with disabilities to (Pogodziska 2013):

In practice, since 1989, institutional care has been on the decline and carers have gained more choice. However, ongoing challenges include: the majority of carers for children and adults with disabilities are female; lack of respite; a limited number of specialists available through the national health service; insufficient focus on mental health; low income; inadequate financial support, and disproportionate access to services between large cities and more remote locations. These challenges were reflected in the protests by people with disabilities and their carers inside and outside the Polish parliament building in 2014 and 2018 (Kubicki et al 2019).

Sweden

Social inclusion of people with disabilities in Sweden is influenced by the Swedish welfare state regime, which emphasises an open and egalitarian society. The main policy on social inclusion for people with disabilities is From Patient to Citizen: A National Action Plan for Disability Policy, passed by the Swedish Government in 2000.

A core aspect of the policy is the ideological shift from considering people with disabilities as ‘patients’ requiring specific and special measures to be part of society, to seeing them as citizens with the same rights and opportunities as others (Danermark and Bolling 2008, de Chenu et al 2016). The policy underpins an inclusive citizenship based on the principles of a diverse society, and equal opportunities and full participation in the community for people with disabilities of all ages.

Strategic policies for social inclusion of people with disabilities include the Strategy for Implementing the Disability Policy 2011-2016, which focuses on accessibility and participation in everyday life for people with disabilities. It identifies nine priority areas including education, public health, social, labour market and transport (Swedish Government 2011). The National Reform Programme 2018 (Government Offices of Sweden 2018) articulates social inclusion for people with disabilities, including those with IDD. It states:

‘The objective of disability policy is, proceeding on the basis of the UN Convention on the Rights of Persons with Disabilities, to attain equal standards of living and full inclusion in society for people with disabilities, in a society based on diversity.’

In the same vein, the Swedish Government’s Action Plan Agenda 2030 stipulates (Gustafsson 2018):

‘The differences that exist in living conditions between individuals and groups should be levelled. Sweden should be a vivid and sustainable democracy, which is characterised by participation and where the opportunities for influence are equal.’

It is important to note that Sweden ratified the UN (2006) CRPD in 2008. In addition, Sweden adheres to the UN (1993) Standard Rules on the Equalisation of Opportunities for Persons with Disabilities, which commit governments to take action to attain equal opportunities for people with disabilities.

Sweden has made great strides in fostering the social inclusion of people with IDD, but much remains to be done. There is a gap between policy goals and intentions and the practical realities facing people with IDD (Tøssebro et al 2012). Regional inequalities in access to services for people with IDD have increased because of decentralisation and marketisation. More still needs to be done in terms of access to employment, healthcare and inclusive education. There is also evidence of increasing institution-like arrangements in community care for persons with IDD (Blomberg et al 2011, Socialstyrelsen 2011).

England, Scotland and Northern Ireland

Devolution across the four countries comprising the UK means that some policy issues including health, education and social welfare are under the control of the constituent nation governments: the Scottish Government, Senedd Cymru in Wales and the Northern Ireland assembly. England also has a specific policy that aims to close the health gap and reduce inequalities for children and adults with IDD, mental health and autism (Department of Health (DH) 2010). The project group producing this article did not have a representative from Wales and so it is not discussed further here.

While there are some differences in the implementation of health, education and social welfare policies, the underlying principles are similar across the four nations (Alcock 2012). For example, the transition from child to adult services for young people across health, education and social care is a policy priority in preparing young adults with IDD for adulthood. This commitment is demonstrated through the Equality Act 2010, implemented across all the component nations of the UK. This legislation makes it illegal for any public body, such as health, education, employment, housing and leisure facilities to directly or indirectly discriminate against any person with a disability, including people with IDD. All public bodies therefore have a legal duty to make ‘reasonable adjustments’ to ensure that people with disabilities, including those with IDD, are not unfairly disadvantaged or discriminated against.

An overview of the main legislation and policies relevant to people with IDD in England, Scotland and Northern Ireland is presented in Table 2.

The legislation and policies on discrimination and social inclusion across the four UK countries reflect the aspiration that people with IDD are included fully in their communities as equal citizens, with control over their lives and life aspirations. However, progress has been impeded by financial restraints and funding cuts which are managed by health and social services departments (Emerson and Baines 2011). Despites the UK’s positive history of reforms promoting social inclusion and equality for people with IDD, they remain a significantly disadvantaged group. Many people with IDD continue to experience education, health and social disadvantages (Heslop et al 2013, Heslop and Marriott 2015). They are more likely to be unemployed and rely on social welfare benefits for income, are less likely to own their own homes, are at greater risk of physical and mental ill-health and more likely to die prematurely from preventable health conditions.

Erasmus+ programme

The Erasmus+ programme enables universities to collaborate in teaching, research, networking and policy initiatives on EU priorities, such as social inclusion. Erasmus+ is the largest programme for student mobility ever developed in Europe. Since 1987 when it was first established, more than five million students have taken part in Erasmus+ (EC 2019).

The Erasmus + programme was used to bring together academics, students and practitioners from the different professions working with people with IDD across the seven countries. It enabled the development of a collaboration between seven universities in these countries (Table 1) focusing on social inclusion and people with IDD. The aim of the collaboration was to develop shared learning opportunities among professions that historically have not been educated together, to develop their knowledge and understanding of the policies that affect social inclusion. Participation also identified areas where collaboration across the professions will be required in the future to ensure that the complex needs of people with IDD are identified and addressed.