Research brief, May Prepared by Pádraic Fleming Mental Health and Social Research Unit Maynooth University Department of Psychology - PDF

How personal budgets are working in Ireland Evaluating the implementation of four individualised funding initiatives for people with a disability in Ireland Research brief, May 2016 Prepared by Pádraic

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How personal budgets are working in Ireland Evaluating the implementation of four individualised funding initiatives for people with a disability in Ireland Research brief, May 2016 Prepared by Pádraic Fleming Mental Health and Social Research Unit Maynooth University Department of Psychology A copy of this report can be downloaded free of charge from ISBN Paperback Ebook May 2016 Supervisors: Dr. Sinead McGilloway, Mental Health and Social Research Unit, Maynooth University Department of Psychology Dr. Sarah Barry, Centre for Health Policy and Management, Trinity College Dublin, the University of Dublin Contents Focus of this research brief 4 Introduction: Individualised funding 4 Historical context 5 Table 1 - Terminology used to describe individualised funding 6 Overview of four Irish initiatives 8 Study aims and objectives 10 Methods 10 Findings The role of stakeholders Process-related factors Impact Systems-related factors 14 Research Briefing 5. Organisational factors The role of the community 17 Recommendations for the implementation of individualised funding 19 Appendix 1 20 References 22 Page 3 of 24 How personal budgets are working in Ireland Focus of this research brief This document is aimed at anyone who is interested in the practicalities, successes and challenges of implementing individualised funding initiatives in Ireland. Those who may be interested include: People living with a disability. Those providing informal supports for people with a disability, such as family members, friends, members of the wider community. Personal assistants / key workers and other paid support for individuals with a disability. Staff members currently implementing individualised funding initiatives. Service providers considering moving to an individualised funding model or incorporating an individualised funding arm into their current service model. Researchers. Funders. Policy makers/drivers such as civil servants and elected members of government. The Health Service Executive (HSE) and other health service staff. There were four organisations involved in this evaluation. The briefing document will present a summary of the main lessons learned according to the key people involved in these four individualised funding initiatives, including individuals with a disability who participated in the initiatives, family members, paid and unpaid advocates; and staff members from within the four organisations. A number of recommendations will be made at the end of the briefing document. These are based on the key lessons presented and are intended to inform, challenge and promote discussion among the readership. Introduction: Individualised funding Individualised funding is an umbrella term for various different funding mechanisms that aim to provide personalised and individualised support services for people with a disability. Many other descriptors which vary across contexts are captured within the umbrella term of individualised funding (see Table 1). Indeed, new terms continue to emerge, as organisations attempt to implement this relatively new model, each striving to meet the individual needs of people with a disability. While the terminology around individualised funding differs, the principles are consistent, based on self-determination, choice, control and, very often, person-centred planning. The initiatives generally aim to place the person with a disability at the centre of the decision making process, with a view to recognising people s strengths, preferences and aspirations. This can empower people to shape public services, including health and social care, by allowing those in receipt of such services to identify their needs, and to make choices about how and when they are supported (Fleming, Furlong, et al., 2016). Page 4 of 24 Historical context The disability sector is complex with considerable variation internationally in terms of progress and models of service delivery, and is often deeply influenced by policy and practices from the past. Historically in Ireland, as in many other countries, family- and advocate-led organisations became the driving force for change, eventually forming voluntary organisations and semi-autonomous non-governmentalorganisations (NGOs), funded largely by the Government. These became the main provider of vocational training, sheltered work and other activities for people with a disability, and continue to deliver services within geographical designated areas to this day. During the 1960s, the medicalised model of service provision became increasingly specialised with professionals recommending the necessary services to address the health care needs of people with a disability. However, in more recent years, a shift in international policy began to move the disability sector towards an individualised and person-centred model, drawing on a more holistic view of what is required to live a fulfilled and healthy life, including personal and social care needs. In Ireland, a number of policy documents based on international best practice have been developed (Department of Health, 2012; Health Service Executive, 2011, 2012). Most recently, the Value for Money and Policy Review of Disability Services in Ireland (2012) currently used as the benchmark for achieving disability sector improvements - recommends, amongst other things, the provision of supports rather than services, using person-centred plans, individualised supports and personal budgets to bring Ireland in line with the global changes within the disability sector (Fleming, McGilloway, & Barry, 2016). Research Briefing Page 5 of 24 Table 1 - Terminology used to describe individualised funding Country Terms used Source of money Support / Care mechanism U.S.A Self-Determination programs Cash and Counseling Consumer Directed Care / Support Medicaid waivers at State level Independent consultant Fiscal intermediary services Direct Payments Local Authority Personal assistant Individual Budget Local Authority Package of care from multiple sources How personal budgets are working in Ireland U.K. Block funding from the Social Care budget Independent Living Fund Other terms used: Recovery Budget Personal Budget Personal Health Budget Microboard Social Care budget Department for Social Security Other funding sources: Supporting People fund Access to work funding Disabled Facilities Grants Netherlands Person-centred budget Dutch Welfare State Residential costs and associated care costs Care from agency OR personal assistant Package of selfdetermined care. Assisted by employed care worker (Often Informal (family) carers). Ireland (Presented in this report) Independent Support Broker / Brokerage Direct payments Innovation funding for pilot Ongoing funding from HSE Innovation funding for pilot Ongoing funding from HSE Package of care from multiple sources / residential costs Package of care from multiple sources / residential costs Self-management model Innovation funding for pilot Community Connector Page 6 of 24 Country Terms used Source of money Canada Direct Payment / Direct Funding Host Agency Funding Community Living British Columbia (CLBC) Community Living British Columbia Support / Care mechanism Supports and services for the individual as agreed to by the individual, agent and CLBC facilitators and CLBC analysts Other terms used: Self-managed care Individualised funding program Support for Interdependent living Australia Microboard Self-directed funding Consumer-directed care Local Area Co-ordination Program Shared management model Self-management (direct payments) Research Briefing Other terms used internationally Indicative allocation, Individual service fund, Managed account, Managed budget, Notional budget, Personalised care, Pooled budget, Self-directed care, Self-directed support, Virtual budget, Cash-for-care. Data sourced from: (Carter Anand et al., 2012; Fleming, McGilloway, & Barry, 2015b; Power, 2010; Webber, Treacy, Carr, Clark, & Parker, 2014) Page 7 of 24 Overview of four Irish initiatives In response to these policy recommendations, Genio provided innovation funding for organisations to pilot individualised funding initiatives in four locations throughout Ireland. These initiatives, which may be categorised in different ways, are described below: How personal budgets are working in Ireland Model Direct Payment Provided to people with different disabilities (& their families) in Ireland to enable people to purchase their own services, mainly Personal Assistance. Run by the ÁT Network, Dublin. Population Mainly people with physical disabilities but also includes people with other disabilities. 20 members at time of evaluation. Funding Mechanism Individual sets up own company whereby they manage finances, hire necessary staff & purchase services directly from providers.. Supports 1. Staff Act as Intermediary between individual & HSE. Support person to use Direct Payment including: o Resources. o Training. o Research & Innovation. o Communication / Events 2. Circle of Support Status Exited pilot stage & is receiving HSE funds on person by person basis. National expansion underway. Direct Payment using Broker Provided support to young adults with disabilities to arrange & access services, to meet their training needs in a community setting. This is a pilot called Bridging the Gap, run within a HSE service in Donegal. People with physical, intellectual & developmental disabilities. 11 individuals participated in the pilot. Direct payment was held centrally & managed on behalf of participant using pre-existing systems. The broker & client developed a PCP (person-centred plan), identified & costed various elements of plan. 1. Broker Negotiated price of services Liaised with organisational staff & review group. 2. Governing / Monitoring Facilitated meetings Developed admin forms Financial review Group o reviewed PCP o approved expenditure o monitored progress No mechanism was available to unbundle existing funding when innovation funding ended. On hold until funding mechanism is put in place. Page 8 of 24 Model Population Funding Mechanism Supports Status Independent Support Broker Supporting people with disabilities to live self-directed lives by negotiating with HSE to release funds usually allocated to traditional service providers for use as personal budget. This is called PossibilitiesPlus, run from within a service provider organisation in County Kildare. Self-management model where individuals planned & managed their training, work, education & recreational activities with the help of a Community Connector. This is a pilot called ConnectAbility, run from within the National Learning Network in Kerry. People with physical, intellectual & developmental disabilities. 9 individuals participating in pilot at time of evaluation. Young adults (18 25) with intellectual / developmental disabilities or mental health problems. 5 individuals Finances & human resources were managed centrally by the brokerage service - utilising pre-existing systems within the organisations traditional service arm. All other mechanisms were separate. Cash provided to individuals for daily expenses. Finances were held centrally & managed by the organisations pre-existing systems. However individuals, with help from the community connector, decided how & where the money was spent. 1. Staff Intermediary between individual / their family & HSE to determine: how much money allocated; is it adequate to meet needs; & is it available to use as personal budget. Get to know the individual & their support structure - formalise or develop circle of (informal) supports. Recruit support worker to work with individual 2. Encourage Circle of Support to: Think creatively, network & try out new experiences. Community Connector Assisted individuals to design their own program, choosing activities & providers that met their needs best Community based training activities were identified to help individuals manage community participation e.g. money management skills, driving lessons. Exited pilot stage & is receiving HSE funds on a person by person basis. HSE has commenced referring individuals to the service. No mechanism was available to unbundle existing funding when innovation funding ended. Project ended. Research Briefing Page 9 of 24 Study aims and objectives The principal aim of this research evaluation was to identify and explore the successes and challenges of implementing individualised funding initiatives within an Irish context. Methods Four organisations were involved in the evaluation. Those who participated in the research included: people with a physical, intellectual or developmental disability; their family members and other advocates; and staff from the four organisations. In total there were twenty people with a disability, twelve family members/advocates and twelve staff involved. International literature and organisational documents were initially examined. These helped the researcher develop a set of questions to ask research participants during in-depth interviews. All interviews were analysed together to identify common themes that emerged within the four pilots. Further detail on the methods can be seen in the flowchart below: How personal budgets are working in Ireland Study approval Ethics Consent Document Analysis Study proposal submitted to academic panel for approval Ethical approval received from the Social Research Ethics Subcommittee in Maynooth University (Reference: SRESC ) Researcher Garda vetted ahead of any data collection All four organisations consented to participate. Staff invited individuals from three initiatives to participate. Most of these individuals gave consent for the researcher to contact them directly. For one initiative staff were invited to participate while secondary data* was used for participants. A second stage of consent was undertaken prior to interviews. At this stage all the relevant information (provided in writing previously) was revisited and explained. Important documents that were used in the development and implementation of the projects were provided to the researcher by staff. These documents provided insight and helped the researcher to determine important questions to ask project participants. Interviews Analysis Themes The researcher travelled to meet staff and project participants. Interviews lasted on average 70 minutes and were recorded and later transcribed. Secondary data for a small number of participants was also transcribed. Number of study participants: 12 staff - 20 project participants - 12 advocates Each line of every interview was read and coded. These codes were categorised into themes that were reoccurring. This is known as thematic analysis. A computer analysis software (MAXQDA) was used to assist this process. 200 codes in total were created. This consisted of 5,554 segments of text. 6 main themes were identified. These were: Stakeholders; Process; Impact; Systems; Organisational; and Community. The remaining codes (200) were subcatergorised under these main headings There were 5 levels of detail, going from: Level 1 - Broad catergory to Level 5 - Detailed information *Note: Secondary data consisted of video files publicly available on the internet, in which participants were discussing their experiences of the individualised funding scheme in question. Page 10 of 24 Findings The evaluation was primarily interested in the successes and challenges of implementing individualised funding initiatives within the Irish context. As a result the facilitators of successful implementation and the barriers to successful implementation will be presented below under the 6 main themes identified in the evaluation. 1. The role of stakeholders One of the main influences on the implementation of individualised funding was the nature of the stakeholders involved. The key stakeholders identified in the evaluation were: People with a disability physical, intellectual, developmental or related to mental health. Advocates Natural supports extended family, partners, friends, neighbours, work colleagues, and members of wider community. Paid supports Personal assistants, key workers, independent support broker, mentor, allied health professionals, administrative & other organisational staff, educators, disability managers within HSE, service providers. Facilitators of successful implementation The availability of a circle of natural supports provided significant benefits for participants in terms of helping them learn to actively engage with the community, especially when learning new social, decision-making and independent living skills. Where no circle of support existed, formal supports (e.g. organisational staff, broker, key worker or mentor) worked hard to identify and engage with potential advocates. Supporters who worked best within this new and evolving environment were described as practical, amenable, friendly and encouraging in their approach. Other personal attributes that were important included having: vision; innovation; personal experience of disability; a willingness to challenge stakeholders and an active role in the community. Essential for all stakeholders was an appreciation of an individual s abilities, passions and interests. Barriers to successful implementation While family members and other paid and unpaid supports were integral to successful implementation, there were certain behaviours/attributes which limited the extent of these successes. These included: treating the individual with a disability as a child rather than an adult; assuming an incapacity to undertake certain tasks based on past experience, or the disabling effects of the traditional paternalistic model of service provision; doing simple and more complex tasks on behalf of the individual; and being over-protective due to previous negative experiences or fears/anxiety associated with the unknown. These appeared to be due, at least in part, to damaged relationships with traditional service providers and health professionals as a result of previous hardships / negative experiences. Research Briefing Page 11 of 24 How personal budgets are working in Ireland 2. Process-related factors The process of developing a personal budgeting initiative began with the host organisations (three pre-existing, traditional service providers & one voluntary group of individuals with a disability) intensively researching international experiences of implementing individualised funding initiatives. In some cases, this involved visiting programmes in the UK and the US. Such site visits were particularly useful due to the absence of any individualised funding initiatives in Ireland previously. The next step was to recruit and, in some cases, train independent support brokers / community connectors, after which the recruitment of participants began. This varied across all four initiatives but involved either informal word-of-mouth or formal HSE referrals via the host organisation. For one of the organisations, the first participants became the future directors/board members of the individualised funding initiative. There were achievements in terms of accessing HSE funds, with the amount of money provided usually based on the cost of traditional day or residential services. Facilitators of successful implementation Essential to the process was giving a voice to the individual with a disability, listening to them and acting upon their wishes. For many individuals who had previously participated in a very structured and prescriptive support environment, decision-making did not come easily. Therefore, considerable time was required to get to know the individual (this is applicable for close relatives also who needed to re-evaluate what they thought they knew about their relative with a disability). This involved identifying the best means of enabling that individual to express their preferences. It was also considered very important to have an
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