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CONGREGATED SETTINGS

CONGREGATED SETTINGS. MEMBERSHIP. Project Leader : Mr Pat Dolan, Local Health Manager, Sligo/Leitrim and West Cavan and Lead LHM Disabilities, HSE West Project Manager : Mr Christy Lynch, Chief Executive Officer, Kare (seconded to work on the Project) 1. Jean Wright, Self Advocate.

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CONGREGATED SETTINGS

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  1. CONGREGATED SETTINGS

  2. MEMBERSHIP • Project Leader: Mr Pat Dolan, Local Health Manager, Sligo/Leitrim and West Cavan and Lead LHM Disabilities, HSE West • Project Manager: Mr Christy Lynch, Chief Executive Officer, Kare (seconded to work on the Project) 1. Jean Wright, Self Advocate. 2. Martin Naughton, Disability Federation of Ireland. 3. Paudie Galvin, A/Director of Disability Services, HSE Dublin Mid Leinster 4. Suzanne Moloney, Area Manager, Disability Services, HSE South 5. Brother Lawrence Kearns, Director, St John of Gods, Ireland 6. Brendan Broderick, CEO, Moore Abbey, Kildare 7. Winifred O’ Hanrahan, National Director of Services, Brothers of Charity 8. Deirdre Carroll, CEO, Inclusion Ireland 9. Eithne Fitzgerald, Senior Policy and Public Affairs Advisor, NDA 10. Mark Blake Knox, Board Member Not for Profit Business Association and CEO Cheshire Ireland 11. Brian Dowling, Assistant Principal Officer, Disabilities, Department of Health and Children 12. Mary McArdle, HSE (Resigned).

  3. REFERENCE GROUP A Reference Group was Established by the National Federation of Voluntary Bodies to Liaise with their Representatives on the National Steering Group.

  4. PART ONE:THE CASE FOR ACTION 1. Introduction 2. The Evolution of Residential Services for People with Disabilities 3. The Places and the People 4. The Learning from Research 5. The Learning from International Experience 6. The Compelling Case for Action 7. The Proposals for Action

  5. PART TWO:PROPOSALS FOR ACTION 8. National Policy and Support Framework for the Transitioning Programme 9. Moving from Congregated Settings: A New Model of Support in the Community. 10. Funding Community-based Support and Housing: Options and Costings. The Places and the People 11. Funding, resourcing and Managing the Transition 12. Summary of recommendations References Appendices

  6. THE PROJECT’S OBJECTIVES & KEY REQUIREMENTS • To identify the number of people with disabilities currently residing in congregated settings, their support needs and the costing of their current service; • To specify a framework to guide the transfer of identified individuals from congregated settings to the community based on best practice and up to date research; • To indicate the likely capital and revenue cost requirements of implementing this framework;

  7. THE PROJECT’S OBJECTIVES & KEY REQUIREMENTS Contd/. • To detail a communication strategy to disseminate information about the project and how it is proposed to implement the framework; • To outline an overview of the current situation so that priorities, if necessary, can be decided; • To present the information gathered in this process to aid in the direction of future policy development in terms of the living arrangements for people with disabilities.

  8. Definition of Congregated Settings i.e, 10 Beds or More Defined and Agreed by Steering Group Based on Preliminary Review of the Evidence Base

  9. SCOPE The project is concerned with all individuals with intellectual, physical or sensory disabilities who currently reside in large congregated settings. Larger congregated settings are living arrangements (whose primary purpose is the provision of services to people with intellectual, physical or sensory disabilities) where ten or more people share a single living unit or where the living arrangements are campus-based.

  10. SCOPEContd./ Settings de-designated either under 1945 or 2001 legislation are included under the terms of reference for congregated settings. Patients in mental health settings not de-designated are to be addressed through the closure plans as part of the implementation plan for vision for change. Included in the Scope as requested by Seamus McNulty.

  11. VISION The following is the Vision used by the Steering Group in Recommending a Way Forward. All individuals currently residing in congregated settings will have the opportunity/right to move to a home of their choice in the community. They will be provided with the individualised supports required to ensure an enhanced quality of life through maximum community participation.

  12. VISION Contd./ In delivering this vision the process must ensure each individual’s right to: • be treated with respect and dignity • be independent and make individual choices • participate in family and community • have opportunity to maximise their full potential • receive outcome based services and supports • be assured of health and safety • choose, receive and direct the services and supports they need

  13. GUIDING PRINCIPLE Each Client is a Citizen of the State. No Service Provider, Third Party or the HSE own a Client and Can Solely Determine or Control the Services and Supports to be Provided to that Individual.

  14. PROJECT ASSUMPTIONS • We will maximise the use of current resources; • the work of the group will be influenced by the principles enshrined in the UN Convention; • The agencies are committed to implement the agreed framework; • All people with disabilities can live with adequate support, in an ordinary home, in a regular neighbourhood; • The rights and quality of life of citizens with disabilities is primary and the time frame and funding will be based on this; • Based on the international / historical evidence, transitional funding will be required to enable new community start ups, whilst old facility is still open. Manpower plan to run parallel with this process.

  15. LITERATURE REVIEW 40 +Studies Reviewed 3 Options Preferred - Dispersed Housing in Community - Supported Living - Independent Living

  16. RESEARCH IN IRELAND BY THE PEOPLE CENTRE 12 Criteria Defined into 5 Domains: • Domain A: Person Centred 1. Involvement in design, implementation and review. 2. Individual supports and services. 3. Dignity and respect. • Domain B: Engagement 4. Collaboration 5. Advocacy 6. Inclusion • Domain C: Leadership 7. Vision 8. Sharing the learning 9. Evaluation and research

  17. RESEARCH IN IRELAND BY THE PEOPLE CENTRE Contd./ • Domain D: Efficiency and Effectiveness 10. Meeting needs 11. Flexibility • Domain E: Growth 12. Growth Evaluation covered: 8 ID Projects, 4 Physical Disability Projects and 3 Cross Disability Projects.

  18. INTERNATIONAL EXPERIENCE Roundtable United States Norway Europe Visits England Wales Sweden United States/Canada Policy Several Jurisdictions have National Policy to close all Congregated Settings.

  19. IRISH SITE VISITS - Wide Range of Physical Accommodation-Examples - Significant Level of Challenging Behaviour - Basic Care ?? - Staff Mix-Data Collection ?? - Privacy + Dignity Issues-Examples - ? Can People Vision a New Future?? - Major Cultural Issues Need to be Addressed.

  20. Table 1: Numbers living in congregated settings, by primary disability

  21. Table 2: Profile of residents with intellectual disabilities in congregated settings and NIDD by severity of disability Note: excludes those whose level of disability is unknown

  22. Table 3: Comparison of residents with intellectual disabilities in congregated settings and all residential services (NIDD 2008) Source: Table 3.2 NIDD 2008; Congregated settings survey

  23. Table 4: Length of time residents in centre have received residential services from Provider Organisation (current and previous)

  24. Table 5: Numbers of residents of congregated settings with Intellectual Disability by age and level of ability

  25. Table 6: Number of residents whose primary disability is intellectual by age and type of additional conditions Note: The disability categories are not necessarily mutually exclusive

  26. Table 7: Number of residents with physical or sensory disability by age and type of additional conditions Note: This table may include some people already tallied in Table 2. The disability categories are not mutually exclusive.

  27. Table 8: How many residents in this unit…. Note: The percentages were calculated as a proportion of residents in those units which supplied data for individual topics in the table. For individual sub-questions, the numbers of residents on which the above table is based ranges between 3,078 and 3,957 covering between 76% and 98%. of residents in the sample.

  28. Table 9: Shared bedrooms

  29. Table 10: Person centred-planning (PCP)

  30. Table 11: Structured day programmes

  31. Table 12: How staff and residents engage in daily activity together

  32. Table 13: Mainstream community activities

  33. Table 14: Family contact Note: Due to the wording of the question, the responses were not mutually exclusive and totals add up to more than 100%.

  34. Table 15: Staff for residential centre/campus (whole time equivalent)

  35. Table 16: Cost range per capita: ten highest cost and lowest cost settings (HSE cost)

  36. IMPLEMENTATION 4 Key Supports 1. Housing Department of Environment 2. Provision of Individualised Social Supports 3. Provision of Individualised Generic Primary Care Supports – PHN, Home Help, GP, Volunteerism, OT, Physio 4. Special Supports (as required) CPN, Psychology, Community ID Nurse, CBT

  37. IMPLEMENTATION 1. Establish National Implementation Group 2. Clearly Elaborate & Agree the New Model of Service 3. Agree Independent Monitoring & Evaluation Strategy 4. Agree Budget 5. Agree Manpower Management Strategy 6. Identify Phase One Demonstration Sites Based on Proposals following National Competition.

  38. SUPPORT PROACTIVE LOCAL CHAMPIONS - Strategic Catalyst Fund Various Funding Streams - Inclusion Transfer Initiatives Requiring Marginal Financial Support - Current Funds Linked to Individuals - Independent Advocacy - Incentives to Establish Exemptions

  39. PROPOSAL LED INITIATIVES 1. Enhancement of Privacy & Dignity 2. Upgrading Health & Safety 3. Evidence of Involvement of Independent Advocacy 4. A Strong Emphasis on Promoting Self-Determination 5 Explicit Strategies for Promoting Inclusion 6. A Strong Cost-effectiveness Rationale

  40. PROPOSAL LED INITIATIVES Contd./ 7. Intentional Strategies for Developing & Mobilising Personal Networks of support (i.e., “freely given” non-paid support) 8. Well Developed Quality Assurance Safeguards 9. An Openness to independent Evaluation 10. Immediacy of Implementability

  41. PROPOSAL LED INITIATIVES Contd./ 11. Inclusion of Persons with High Support & Complex Needs 12. Explicit Integration with Generic Health & Personal Welfare Services e.g, Primary Care Teams, Community Welfare Supports, Specialist Multi-Disciplinary Teams

  42. SUMMARY OF RECOMMEDNATIONS

  43. National Policy & Support Frameworks for the Transitioning programme (chapter 8) Department of Health and Children vision and policy statement The Department of Health and Children should issue a vision and policy statement on the closure of congregated settings and transition of residents to community settings. The policy should mandate that: • All those living in congregated settings will move to community settings • No new congregated settings will be developed and no admissions will take place to congregated settings. • The move to community will be complete within seven years and minimum annual targets set for each year in order to reach that goal. RECOMMENDATION 1 (8.2)

  44. RECOMMENDATION 2 (8.3) National Housing Strategy The Working Group’s proposals should be reflected in the National Housing Strategy being prepared by the Department of Environment, Heritage and Local Government. The strategy should describe the eligibility of people with disabilities for publicly funded housing supports. The Strategy should reflect the research evidence that dispersed housing in the community provides a better quality of life for people with disabilities than cluster-style housing.

  45. RECOMMENDATION 3 (8.4) National oversight A named senior official of the HSE should be charged with driving and implementing this policy, assisted and guided by a National Implementation Group. Progress on implementation should be reported every six months to the HSE Board, to the Department of Health and Children, and also reported to the National Disability Strategy Stakeholder Monitoring Group. The housing Letting practice in Local Authorities should be monitored as part of national implementation.

  46. RECOMMENDATION 4 (8.5) Amanpower strategy A manpower strategy to support the programme of transition to community settings should be devised by the National Implementation Group in partnership with key stakeholder groups. The strategy should address staffing requirements and skill mix needs for community inclusion, skill development and professional development requirements, and the human resource aspects of the transition programme.

  47. RECOMMENDATION 5 (8.6) National Protocols to support community inclusion A Working Group should be set up to develop the protocols needed to ensure a co-ordinated approach to community inclusion for people with disabilities. These protocols should be developed across key government departments and agencies, in partnership with the National Implementation Group; they should be prepared within the framework of the National Disability Strategy and have regard to the Sectoral Plans prepared under that Strategy.

  48. RECOMMENDATION 6 (8.8) Change management programme A change management programme to support the transitioning programme should be developed and resourced. The change management plan should be executed by HSE and overseen by the National Implementation Group.

  49. Moving from congregated settings: A new model of support in the community Providing a Range of Community-based Housing Options (Chapter 9). RECOMMENDATION A new model of community-based support (9.1) The provision of accommodation for people moving from congregated settings to their local community must be broader than a plan for accommodation; accommodation arrangements for housing must be part of a new model of support that integrates housing with supported living arrangements. The new model of support should be based on the principles of person-centeredness; it should enable people with disabilities to live in dispersed housing, with supports tailored to individual need

  50. RECOMMENDATION 7 (9.3) Dispersed housing in the community All those moving from congregated settings should be provided with dispersed housing in the community, where they may: • Choose to live on their own • Share with others who do not have a disability • Share their home with other people with a disability • Opt for long-term placement with a family or live within their own family

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