From User to Citizen

1. From User to Citizen 16 years of experience in Norway with the dismantling of disabling barriers

2. Can we learn from the Norwegian experience? • Demographic similarities to Ireland: • Relatively small population (4 ½ million) • 4 cities (population more than 100,000) • Majority of towns have a population of less than 5,000 • Strong ideology on supporting autonomous local government and decentralisation of services • Strong culture of normalisation and equality for all citizens • 1st January 1991 – a total reform of the care people with learning disability

3. The vision “From service user to citizen” • All institutions to close by December 1995 • People with intellectual disability should access mainstream services • Mainstream services must change in order to accommodate ALL Norwegian citizens - whether or not they have a disability. NO MORE SEGREGATED SERVICES

4. Pre-school • Children with disabilities should be given priority to places in their local pre-schools • Special grants were to be made available to existing pre-schools to make any necessary accommodations for the child • All new pre-schools must be fully accessible to everyone, both indoors and outdoors, so that as far as possible, there is no need for “special” adaptation for “special needs”

5. School • All schools must provide education suited to the individual child (IEP) This applies to ALL children, with or without disability • Extra teachers and classroom assistants are provided as needed • Special education (from specially qualified teachers) within the mainstream school should be available to children with special needs

6. Housing • Adults with intellectual disability should own or rent their own home • The homes should be in their local communities and of the same standard and form as any typical home in that community • Support services should be linked to the individual, not the accommodation • Staff do not sleep or have offices in the person’s home

7. Work • Since the 1990’s Norwegian employment politics focused on “ the work line”. This meant that everyone should work to the best of their ability in ordinary paid jobs. This goal included people with intellectual disability • The government put several strategies in place for overcoming barriers to work for people with disabilities (including supported employment)

8. Recreation • People with intellectual disability should have the same cultural and recreational opportunities as anyone else • Cultural and recreational activities should be integrated with already existing activities in the community

9. Transport • Access to transport is essential for access to recreational activities, education, work, and daily activities such as shopping, going to the dentist, etc. • A goal of the reform was to ensure: • accessible public transport to enable all to live an active life • Taxi services for individuals who cannot use public transport (or where public transport is not developed enough) • Part of the ordinary taxi service although booked separately and state subsidised • Pay public transport rates (€2) • Escorts (paid, friends or family) travel with you for free

10. Health services • People with intellectual disabilities should access their local health/clinical services using the same routes as anyone else • Local health services can refer to secondary or tertiary medical services in the same way as for any other members of the population. • At county level, habilitation teams were set up. These teams were to provide a consultancy service to individuals with learning disability, their families and staff.

11. The start (1988 - 1991) • Development of habilitation plans for every individual with learning disability (over 13,000 individuals registered) • Social services set up “responsibility groups” around each individual consisting of the individual, family members, staff, clinicians • These groups were responsible for supporting individuals to: • Choose habilitation goals • Identify individual needs and preferences in all areas of life • Identify the types of services they would need • Identify the levels of support needed • Identify the need for interagency co-ordination • Draw up plans for implementation

12. Results after 10 years (2001)(The Norwegian Council of Research) • General improvement in standard of living and opportunities for a “normal” life • Many people were now living in their own homes • Children were attending local playschools and schools • Adults were in jobs or taking part in activities in their local communities and living in their own homes • Services were provided from the local community HoweverStudies of health before and after the reform did not show any improvement

13. Results 16 years after the reform • Report from the Directorate of social welfare and Health “ We want to, we want to, but are we able to?” (June, 2007) • Hearing conference organised by the “State Authority for People with Disability” (September, 2007) at the request of the Minister of Work and Inclusion

14. Outcomes - preschool Concerns • “Clustering” Some pre-schools have staff that are specifically trained to work with children with special needs. There is a tendency that children with intellectual disability go to these pre-schools. Children with disabilities are included in their local pre-schools

15. Outcomes - preschool Concerns • “Clustering” • The number of children in segregated classes within the school is increasing • Growing numbers of children are being sent to schools for special diagnosis groups (ADHD, Autism, Blind, Deaf, Speech Impediments) • Standard of education not better than in special schools • Few third level education opportunities Every child with a learning disability has a place in mainstream school

16. Outcomes - Housing (Norwegian Institute for Town and Regional Research) Concerns • Clustering • 79% rent from the social services • 1/3 of those live with others • 1/3 live in homes that are clustered 78% of adults with learning disability live in their own accommodation by 20 years of age

17. When social services provide housing they tend to: • Build bigger houses for larger groups • Build houses close to houses for people with intellectual disability and/or other minority groups • Build houses that look different from ordinary homes • Link support staff to houses, not to individuals which means that 30 – 40 part-time staff can be linked to one house • Change their priorities – they are now focusing on accommodation for the elderly and people with mental health issues and waiting lists for people with learning disability are starting to appear

18. Outcomes - work CONCERNS • Only 1300 people with intellectual disability are employed in the open labour market • 80% who work are in some form of sheltered work • Only 4% of people with intellectual disability were included in government schemes to integrate them into ordinary jobs The number of people with intellectual disability in work is higher now than before the reform

19. Outcomes - recreation CONCERNS • Overall participation in cultural and recreational activities has decreased • People with high level support needs seldom have a holiday away 10, 500 people have “social supporters” (paid friends) and a total of 165 recreational assistants are employed full time across the country

20. Outcomes - Transport • Improvement in accessibility of public transport – but not consistent • Taxi service for people with disabilities can be used for recreational activities, going to shops, banks, official offices BUT not for getting to and from work!

21. Health services – research results • 1995: increase in physical problems, psychiatric illness and challenging behaviour after the reform • 2006: in 44 of 59 local communities audited, restraint was being used illegally • 2007: Increase in the use of antipsychotic medication – often prescribed for challenging behaviour without any clear indications of psychotic symptoms

22. Why the negative trends? • Shift of political focus to next “big” reform • Funding used for other “needy” groups • No legislation to ensure rights • Lack of competence in community services • Loss of qualified professionals • Lack of transparency in community services • Poor overseeing/auditing of services • A natural tendency towards clustering

23. Avoiding the pitfalls: • Appoint personal co-ordinators/managers who are responsible for developing plans for individuals that describe the optimum life situation for that person in terms of goals and support • Develop legislation that ensures: • that individual plans are implemented • that individuals have rights to services and resources of certain standard • that housing people in groups, to save money/resources is not permitted

24. Avoiding pitfalls (contd.) • Strengthen skills of staff: • Strengthening of competence/qualifications of staff/service providers/health practitioners in all life arenas • Develop local support services for staff that can give ongoing advice, support, training and feedback to frontline staff on their daily work (more than a consultancy service for problem behaviour) • Set up systems to ensure transparency and accountability of services with regular evaluations and audits • Have a holistic focus, on all life arenas for each individual from day one