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

Deinstitutionalisation and Community Living: Outcomes and Costs (DECLOC) - implications for Central and Eastern European countries Julie Beadle-Brown Tizard Centre, University of Kent, UK.

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.

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

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

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.

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 >30 places. Romanian data does not include children

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.

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 institutionalisation 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.

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.

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.

Recommendations from Phase 1 • Agree a harmonised data set at European level • Publish statistics demonstrating progress in each country

Phase 2 – conclusions and recommendations

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’

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

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

Likely effects of transition

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

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

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

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

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

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.

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

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

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 – don’t 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.

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