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

Julie Beadle-BrownTizard 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 partnersConsortium 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 sizeCountry Places Size<30 Size>30 Not classified Austria Belgium 25750 5164 18130 2456 Bulgaria 13269 216 11540 1513 Cyprus 495 495 Czech Rep. 66865 9858 57007 Denmark 62081 62081 Estonia 22421 1805 7243 13373 Finland 18032 18032 France 224827 224827 Germany Greece Hungary 24390 1114 23276 Ireland 9369 9369 Italy 117241 14514 81428 21299 Latvia 10053 10053 Lithuania 45464 180 14924 30360 Luxembourg 704 410 294 0 Malta 642 88 544 10 Netherlands 64144 59450 4694 Poland 73741 73741 Portugal 11422 4427 6995 0 Romania 32783 214 28348 4221 Slovakia 12252 716 3142 8394 Slovenia 821 821 Spain 181636 2425 777 178434 Sweden 29578 29578 Turkey 9494 86 3127 6281 UK 129548 33530 48781 47237 Total 1186962 124339 235131 827492

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

1. Agree a harmonised data set at European level

2. 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

After transition to services in the community

Costs

Quality Cost-effectiveness

Less expensive institution Less disabled person

Same or lower Same or higher Same or better

More disabled person

Higher Higher Same or better

More expensive institution Less disabled person

Lower Same or higher Better

More disabled person Same or lower Higher Better

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.