Deinstitutionalisation and Community Living: Outcomes and Costs DECLOC implications for Central and

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Deinstitutionalisation and Community Living
Outcomes and Costs (DECLOC) - implications for
Central and Eastern European countries

• Julie Beadle-Brown
• Tizard Centre, University of Kent, UK.

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Aims of the project

• To provide scientific evidence to inform and
  stimulate policy development in the reallocation
  of financial resources to best meet the needs of
  people with disabilities, through a transition
  from large institutions to a system of
  community-based services and independent living.

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Project partners

• Consortium leaders
• University of Kent (Prof Jim Mansell, Dr Julie
  Beadle-Brown)
• London School of Economics (Prof Martin Knapp)
• Partners
• University of Siegen (Dr Johannes Schädler)
• Psicost Scientific Research Association (Prof
  Luis Salvador-Carulla)
• Charles University, Prague (Dr Jan Siska)
• Catholic University of Leuven with European
  Association of Service Providers for People with
  Disabilities (Prof Chantal Van Audenhove, Mr Luk
  Zelderloo)
• Reference Group
• European Disability Forum
• Inclusion Europe
• Mental Health Initiative, Open Society Institute
• Autism Europe
• Mental Health Europe

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Project structure

• Phase 1
• Collate existing information on number of
  disabled people in institutions in 28 countries
• Phase 2
• Analyse economic and policy arrangements
  required for transition to community-based
  services
• Phase 3
• Report in a form suitable for stakeholders and
  policy-makers
• http//www.kent.ac.uk/tizard/research/DECL_network
  /index.html

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Findings - Effort

• Individual countries varied in the extent to
  which
• (i) key informants could be identified who were
  willing to help provide or access the data
  required eventually found in 26 of the 28
  countries
• (ii) there was already data available at national
  level, and
• (iii) information on the definitions used and the
  quality and completeness of the data was
  available.
• National data, albeit of limited coverage, was
  found in 23 of the 28 countries
• However, in general, getting comprehensive
  national data was very difficult.

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Completeness number of places and size
BUT Bulgarian data does not include psychiatric
wards or hospitals limited for Czech data
too. Hungarian, Czech and Polish data not broken
down by size but descriptions of service types
implies gt30 places. Romanian data does not
include children
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Breakdown by disability, age and gender

• Breakdown by disability limited best in
  Bulgaria, where only 1333 places were unspecified
  by disability group majority ID. Over 50 of
  places unspecified by disability for Czech Rep,
  Hungary, Poland and Romania. In Hungary almost
  all places were for mixed disabilities ie.
  institutions not broken down by disability.
• Breakdown by gender good for Hungary, but largely
  missing for Czech Rep. and Romania.
• Breakdown by age was not complete although best
  for Hungary. Almost all data relates to adults.

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Estimates of number of people in institutional
care

• Rough estimates using a variety of data
  sources.
• At least 1.45million people in residential care
  across Europe
• Over 70 of those in residential care live in
  services of more than 30 places.
• Estimated rates per 100,000 of institutionalisatio
  n range from 0 (Sweden) to over 500 (Estonia and
  Latvia)
• Likely that estimates in most countries are
  under-estimates, given that we know that some
  service types and some disability groups, age
  groups etc not included.

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Estimates for Eastern Europe

• Czech Republic At least 341 per 100,000 in
  residential care,302 in institutional provision.
• Hungary At least 242 per 100,000 in residential
  care, 224 in institutional provision.
• Poland At least 193 per 100,000 in residential
  care, all of these in institutional provision.
• Bulgaria At least 167 per 100,000 in residential
  care, 163 in institutional provision.
• Romania At least 138 per 100,000 in residential
  care, 136 in institutional provision.

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Conclusions from Phase 1

• Article 31 of the UN Convention on the Rights of
  Persons with Disabilities requires States to
  collect data to enable them to formulate and
  implement policies to give effect to the present
  Convention. Such information shall be
  disaggregated as appropriate and used to address
  the barriers faced by disabled people in
  exercising their rights. States shall assume
  responsibility for the dissemination of these
  statistics and ensure their accessibility to
  persons with disabilities and others.
• Most countries taking part in this study have
  some way to go to meet these requirements.

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Recommendations from Phase 1

• Agree a harmonised data set at European level
• Publish statistics demonstrating progress in each
  country

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Phase 2 conclusions and recommendations
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System structures

• Support from families, friends and neighbours
  important but often unsupported
• Many different agencies or sectors involved
• Mix of funding arrangements can lead to
  difficulties because of the incentives and
  disincentives they can create
• Complex context (multiple services, multiple
  agencies, multiple funding sources and routes)
  means no simple financial levers

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Policies and plans

• Challenge is to build good services in the
  community and this needs coordination and
  planning
• Transition from institutions to services in the
  community needs a mandate for a detailed vision
  of the future care system based on user and
  family involvement
• Plan needs to be based on relevant knowledge and
  robust evidence about cost-effectiveness
• Important to understand for whom is a particular
  service or intervention likely to be
  cost-effective

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Costs, needs and outcomes

• Costs of supporting people with substantial
  disabilities are usually high, wherever those
  people live. Low-cost institutional services are
  almost always delivering low-quality care.
• There is no evidence that community-based models
  of care are inherently more costly than
  institutions, once the comparison is made on the
  basis of comparable needs of residents and
  comparable quality of care. Community-based
  systems of independent and supported living, when
  properly set up and managed, should deliver
  better outcomes than institutions.
• Comparisons of cost-effectiveness must be made on
  a like-for-like basis

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Likely effects of transition
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Supply constraints

• Family care may not be available
• Support can be provided to families
• A common barrier is a shortage of suitably
  skilled staff
• Recruiting and training staff for community
  services needs to be done before disabled people
  start to move out of the institutions

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Local economic development

• Closing an institution could impact local
  employment patterns if it is the only or main
  local employer
• Services are needed throughout the community so
  will not completely substitute for the
  institution
• Local economic development therefore needs to be
  taken into account

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Opportunity costs of capital

• Many institutions have low value and might not
  therefore generate much additional money
  investment into community services
• Building value will generally not be realised
  until the institution has completely closed down.
  Consequently, some hump costs will be needed
  funds made available quite early for investment
  in new community facilities to get them underway
• Double running costs will also be needed to
  resource both the old and the new services in
  parallel for a few years until the institution
  has fully closed down

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Funding flows

• Ring-fencing
• Devolved budgets
• Funding tied to individuals
• Commissioning that creates incentives for
  improvement
• Balance between injection of new money and budget
  stability

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Multiple funding sources

• Different services, delivered by different
  agencies out of different budgets require
  coordination
• Joint planning and joint commissioning may help
• Devolving responsibilities to case/care managers,
  or even to individual service users via
  self-directed care arrangements may also help

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Dynamics of change

• The dynamics of change are complex and can send
  out misleading signals about changing costs and
  outcomes. Decision makers must ensure that they
  take the long view.
• Institutional costs rise as demands for higher
  quality increase but outcomes cannot match those
  of community based services.
• Good services in the community are in the long
  term only slightly more expensive for those with
  very complex needs but give much better outcomes.
  Additional cost usually balanced by the reduced
  costs of supporting more able people in the
  community.

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How can governments take forward this agenda?

• Strengthen the vision of new possibilities in the
  community
• Sustain public dissatisfaction with current
  arrangements
• Create some practical demonstrations of how
  things can be better
• Reduce resistance to change by managing
  incentives for the different actors in the process

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Conclusions

• Need vision and leadership by national and
  regional governments, working in close
  collaboration with representatives of users and
  their families
• Need a comprehensive, long-term perspective,
  considering all the costs and benefits of
  transition
• Need creative solutions to implementation
  problems and learning as experience and knowledge
  are gained
• Once comparison is made on the basis of
  comparable needs of residents and comparable
  quality of care, there is no basis for believing
  that services in the community will be inherently
  more expensive than institutions

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Implications and challenges for Eastern European
Countries

• How to create dissatisfaction? Context is the UN
  convention on Rights of People with Disabilities
  plus need to show that it is possible in your
  country.
• Need to plan but with a long-term, strategic view
  investment now will pay off in the future.
• Learn from the mistakes of other countries
  dont just repeat them need to make sure
  community based services are good quality from
  the start and are for everyone, not just the most
  able.