1. Inclusion Ireland AGM & ANNUAL CONFERENCE 2008 From Service User to Citizen Personalised Budgets for People with Intellectual Disability How people can have control over their Money? Karina Wallis SCJMS

2. How can people have control over their money? National Policy National Policy Enhancing the partnership Incorporating widening the partnership DOH&C 1999 Enhancing the partnership Incorporating widening the partnership DOH&C 1999 The role of HB/HSE The role of HB/HSE Co – coordinating /consultative committees Co – coordinating /consultative committees Service Bids Service Bids Regional Service Plans Regional Service Plans Allocation of Funding Allocation of Funding

3. How can people have control over their money? Role of Service Provider Role of Service Provider Identification of the service requirements Identification of the service requirements Identification of service user needs Identification of service user needs Service bids Service bids Advocacy Advocacy

4. How can people have control over their money? Current Practice Current Practice Funding allocated to service providers Funding allocated to service providers Spending of Funding received Spending of Funding received Service Delivery Service Delivery Monitoring Monitoring Value for money Value for money Who has control? Who has control?

5. How can people get their money? Values/Principles Current Practice Exclusion Exclusion Minimum consultation Minimum consultation Prescribed choice Prescribed choice Group based Group based Segregation based Segregation based Paternalism Paternalism Inaccessible Inaccessible Enhancing Partnership: Right to quality services that respect their dignity in a least restrictive environment aiming for greatest possible inclusion Equalisation of opportunity Equity, quality of service Accountability Health & Social Gain

6. How can people get control of their money? Policy Direction Policy Direction 11 years since the strategy for equality 11 years since the strategy for equality 11 years since such wide consultation with people with disability on all service levels has occurred 11 years since such wide consultation with people with disability on all service levels has occurred Has equality been achieved? Has equality been achieved? Do the present structures for identifying and allocating funding recognise the service user as an equal partner? Do the present structures for identifying and allocating funding recognise the service user as an equal partner? Are the present structures for identifying and allocating funding transparent and fair? Are the present structures for identifying and allocating funding transparent and fair?

7. How can people get their money? The Future The Future Will this model serve us into the future? Will this model serve us into the future? Will this approach ensure that the needs of the service user informs decision making? Will this approach ensure that the needs of the service user informs decision making? Will consultation with the service user/family/advocate be core to the process of planning? Will consultation with the service user/family/advocate be core to the process of planning? Will assessment of need direct allocation and spending of funding resources? Will assessment of need direct allocation and spending of funding resources?

8. How can people get their money? Best Practice/Policy that needs consideration: Best Practice/Policy that needs consideration: Assessment of need in context of living a meaningful and fulfilled life Assessment of need in context of living a meaningful and fulfilled life In depth consultation with the service user/family/advocate In depth consultation with the service user/family/advocate Person Centred Services Person Centred Services Informed choice Informed choice Shared autonomy/decision making Shared autonomy/decision making Respect Respect Innovation Innovation Leadership Leadership Monitoring Monitoring Accountability and personal responsibility Accountability and personal responsibility Levelling playing pitch Levelling playing pitch Equal Citizen Equal Citizen

9. Now you have your money – what next? Consider type of service provision that will give you maximum control over your money: Consider type of service provision that will give you maximum control over your money: Individual Service Design – Best Practice Model Individual Service Design – Best Practice Model Designed from scratch Designed from scratch Person Centred Person Centred Assessment of need in the context of leading a meaningful and fulfilled life Assessment of need in the context of leading a meaningful and fulfilled life Informed choice & decision making Informed choice & decision making

10. Now you have your money – what next? Consider type of service provision that will give you maximum control over your money: Consider type of service provision that will give you maximum control over your money: Presumes competence Presumes competence Respect & dignity Respect & dignity Natural networks of support Natural networks of support Individualised safeguards Individualised safeguards Service is uniquely attuned to the person Service is uniquely attuned to the person Flexible & Responsive Flexible & Responsive Move from Service user to citizen Move from Service user to citizen

11. Now you have your money what next? Individual Service Design Vision Vision Assumptions Assumptions Planning Planning Design Design Implementation & Review Implementation & Review Control of your money Control of your money Is this possible? Is this possible?

12. Now you have your money what next? Yes! Yes! Change in current structures & supports Change in current structures & supports Partnership Partnership Flexibility Flexibility

13. Now you have your money what next? New structures & Supports: New structures & Supports: Funding Funding Level of decision making Level of decision making Level of Authority Level of Authority

14. Now you have your money what next? New Structures: New Structures: Governance Governance Definition Of Delegated Program Governance For Consumers & Families (& Allies) Definition Of Delegated Program Governance For Consumers & Families (& Allies) Delegated program governance constitutes the assignment of specific oversight authority over service design and implementation to service users and families, either individually or collectively or both, and may include the delegated conditional power to design and guide service development ( Kendrick)

15. Now you have your money what next? New Structures: New Structures: Governance Governance Definition Of The Self-Management Of Service By Service Users, Families (And Allies) - The self- management of services involves a direct operational management/administrative role by service users and families (and allies). This role may be in regards to some or all aspects of service and may be shared in any combination of others including staff. Definition Of The Self-Management Of Service By Service Users, Families (And Allies) - The self- management of services involves a direct operational management/administrative role by service users and families (and allies). This role may be in regards to some or all aspects of service and may be shared in any combination of others including staff. ( Kendrick)

16. So now you have your money what next? Some international Examples: Some international Examples: Consumer & Family Support Network Consumer & Family Support Network Consumer & Family Governance Hosting Arrangement Consumer & Family Governance Hosting Arrangement Purchase Service from service provider Purchase Service from service provider

17. So now I have the money what next? Some Irish examples Some Irish examples Microboard Microboard Hosted model Hosted model I.S.D. I.S.D.

18. So now you have your money what next? Pioneering road to have control of my money requires: Pioneering road to have control of my money requires: Vision Vision Leadership Leadership Courage Courage Partnership Partnership Information Information Creativity Creativity

19. How can people have control over their money ? Pioneering road to have control of my money requires: Pioneering road to have control of my money requires: Support Support Sharing Sharing Advocacy Advocacy Empowerment Empowerment Responsibility Responsibility Accountability Accountability Flexibility Flexibility Mutuality Mutuality Openness Openness Equal Citizen Equal Citizen