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From User to Citizen

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Can we learn from the Norwegian experience? Demographic similarities to Ireland: ... Escorts (paid, friends or family) travel with you for free. Health services ... – PowerPoint PPT presentation

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Title: 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
NO MORE SEGREGATED SERVICES
  • 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.

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
    persons home

7
Work
  • Since the 1990s 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
Children with disabilities are included in their
local pre-schools
  • 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.

15
Outcomes - preschool
Every child with a learning disability has a
place in mainstream school
  • 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

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

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
The number of people with intellectual disability
in work is higher now than before the reform
  • 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

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

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
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