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