From User to Citizen 16 years of experience in Norway with the dismantling of disabling barriers.
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Transcript of From User to Citizen 16 years of experience in Norway with the dismantling of disabling barriers.
From User to Citizen
16 years of experience in Norway with the dismantling of disabling barriers
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
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
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”
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
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
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)
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
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
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.
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
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
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
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
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
78% of adults with learning disability live in their own accommodation by 20 years of age
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
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
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
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
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!
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
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
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
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