LIVING IN THE COMMUNITY:

SERVICES AND SUPPORTS FOR PEOPLE WITH DISABILITIES

INTRODUCTORY REPORT

DISABILITY FEDERATION OF IRELAND (DFI)

NOT FOR PROFIT BUSINESS ASSOCIATION (NFPBA)

March 2013

Disability Federation of Ireland

Not for Profit Business Association

March 2013

Researchers:

Liza Costello and Wendy Cox

PREFACE

The success in blurring the lines between inclusion and exclusion sometimes makes it difficult to see where the needs and responses associated with disabilities begin and end. Level or ramped pathways; automatic opening and closing doors; audible pedestrian crossings; destination announcements on transport; the availability of “hearing loops”; a guide dog’s head protruding from beneath a table in a restaurant; accessible toilets; and Braille on medical packs – all of these have been supported by the power of goodwill in the community.

The fuel for the engine of goodwill is derived from the work of voluntary organisations and people with disabilities. While some of the areas mentioned above now come under legislative requirements, they had their beginnings in campaigns by the voluntary sector, made up as it is from the people with disabilities themselves, their families and friends, aided by the professionals who help to interpret individual needs into person-centred solutions.

Voluntary organisations that form the subject of this study support the independence and person-centred rights of people with disabilities through various resources and supports. So invisible have these supports become to the uninformed observer that they might not be seen to exist at all but they are there in the episodic help with a life-style issue presenting today and which might not present again for months or years. The interventions of the organisations explored in this study form a type of virtual hyper-market where people with diverse forms of disabilities and very particular needs come for a specialism, a unique form of help or advice or hardware that sustains them as neighbours, participants, spectators and as engaged and disengaged as they wish to be.

The above is not the language of illness or health. Too often we continue even today to look at people with disabilities through a lens which sees them just emerged from the hospital, on their way to a rehabilitation centre or on their way back into medical care.In the last census, 595,335 people declared themselves as having different forms of disability. These are the people for whom the organisations in this study exist as facilitators of their independence and ameliorators of their disabilities.

It is true that there are people with disabilities currently living in inappropriate settings, and this needs to change. Equally true is the fact that there are many more people in the community who need disability specific supports and facilitated access to mainstream services to live ordinary lives.Community based services and supports make key public services like health, housing and education inclusive, in line with the National Disability Strategy, thereby contributing to the State meeting its obligations under the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). Planning to move people out of inappropriate settings into communities, without at the same time planning to support existing community based services and supports does not make sense. This research contributes to our understanding of the role of disability organisations in providing these kinds of services and supports that enable people to continue living independently in their communities.

John Dolan,Desmond Kenny

CEO Chairperson

Disability Federation of IrelandNot for Profit Business Association

INTRODUCTION

This report synthesises the key findings of research commissioned by the Disability Federation of Ireland (DFI) and the Not for Profit Business Association (NFPBA) in September, 2012. It also sets out the policy implications arising from these findings. The research set out to capture the nature, scope, level and quality of the community-based services and supports provided to people with disabilities and their families by voluntary disability organisations.DFI and NFPBA’s decision to commission this work arose out of the need to address the gaps in information in the Value for Money and Policy Review of Disability Services (DoH, 2012) with respect to the work of voluntary disability organisations providing services to people living in the community[1]. The report notes that:

“The quantification of complex outputs (including respite, early intervention service, home support, personal assistance and multidisciplinary therapies) and outcomes was not feasible within the resources available to the Review….. As a result, the Review concentrated on the collection and analysis of data on outputs that represented the bulk of the funding. This was a pragmatic decision taken out of necessity and does not represent a judgement call on the services and supports not analysed. The identification of services and supports that are not currently defined, measured and costed on a national basis is, in itself, a useful finding” (DoH, 2012: 75).

TheReview also noted the value of these organisations to the sector:

“…some agencies, particularly those serving people with physical disabilities, have developed from a community base with the aim of promoting and protecting client choice, control and independence. These agencies already operate a client-focused model of service and they provide examples of good practice, which can be used to inform decision-making in the wider disability sector.”

The study involved carrying out documentary research and in-depth qualitative interviews with representatives of fifteen disability organisations working with people with physical and sensory disabilities, neurological conditions, as well as people with intellectual disabilities in the provision of services in community settings[2]. The main research report contains a detailed and rich description of the variety of community services and supports that allow people to continue living in the community. Meanwhile, in thisintroductory report we have set out the context and rationalefor the study, and presented the key findings, conclusions, and recommendations based on the research findings.

KEY FINDINGS AND RECOMMENDATIONS

  1. The Department of Health should undertake a review of the community based services and supports not examined in the Value for Money Review so that a comprehensive picture of disability services is available on which future planning and policy decisions can be made. This review should build on any data relating to community based services and supports already collected for the Value for Money Review, and in that process develop more effective ways of measuring outputs and outcomes for these types of services and supports. Such a process would facilitate the articulation of a new vision for community services for people with disabilities.
  1. The voluntary sector as a whole – perhaps through DFI and NFPBA – should be proactive in identifying and analysing existing and emerging good practice models in relation to the evaluation of outcomes and the measurement of the social value of the supports and services they provide. Once an appropriate model is identified, information should be disseminated and training provided so that organisations can apply it as effectively as possible in their own work.
  2. While national policy, for example, the Value for Money Reviewhas a new emphasis on community settings, and the migration to a new model of service in the community for people with disabilities, the provision of community based services and supports is not new to the organisations participating in the research.
  3. The voluntary disability organisations who participated in this research are a critical part of the community and mainstream social and health infrastructure. The value of this infrastructure should be maintained, and promoted in developments relating to the agenda for reform for the HSE’s Disability Services Programme.
  4. Certain key features, reflected in their mission, ethos and at operational level make the organisations an extremely important, and often vital, resource in enabling people to live as independently as possible within their own communities. These features are: a naturally person-centred approach; specialised knowledge and skills; adaptive to change; and being connected and collaborating in the community and beyond.
  5. A concern was highlighted that the recommendations contained in the Value for Money and Policy Review will be viewed as the only change required for disability services. A concern also exists that national policy decisions will be made that are based on incomplete data, arising from gaps in the analysis of community based services in the Value for Money Review. This could result in jeopardising the effective functioning of these services.

PERSON CENTRED APPROACH

  1. As many of the participating organisations felt that the true meaning of person-centredness was not fully appreciated, there is a need for a mechanism to support a shared understanding of what exactly a person centred approach involves, and the implications of working in this way.
  2. Funding models need to be further developed that allow for, and support flexibility in the delivery of person centred supports and services.
  3. The learning that has been gained over many years with regard to person centred planning should inform future developments in disability policy, including individualised budgeting, and resource allocation models.
  4. A system needs to be devised with an appropriate methodology that allows for the recording of person centred outcomes as they relate to community based services and supports.
  5. The research study focused solely on the perspectives of the voluntary disability organisations themselves. Further research exploring the effectiveness of community-based services and supports would benefit from the perspective of people with disabilities and their families who are using these services.

SPECIALIST KNOWLEDGE AND SKILLS

  1. Due recognition and understanding of the disability specific supports and services provided by these organisations is required in a context wherethe policy direction is to make public services universal, equally open and available to everyone in society. The work of these specialist services facilitates people with disabilities’ access to and use of mainstream health services, as well as other public services.
  1. Providing a bridge between the person with a disability and the services they require is a distinctive feature of the work of community-based organisations, which needs to be valued accordingly in the development of new models, relating to assessment of need, resource allocation, monitoring of resource use and in agreeing outcomes for people with disabilities.

WAYS OF WORKING

  1. The flexible and collaborative ways of working that organisations have developed support and facilitate integration and shared learning, and demonstrate good practice that should be promoted.
  1. Achievements representing significant value for money should be registered in health service accounting systems, such as preventative work that keeps people healthy and out of hospitals.A methodology that allows for the inclusion and measurement of these types of outcomes is required.
  1. Participating organisations add value in a variety of ways to the services and supports provided on the basis of statutory income. Important forms of added but largely unmeasured value include the widespread use of co-funding; dedication and flexibility of staff in working unpaid overtime hours; the significant contributions of volunteers to support organisations; and providing buildings and facilities for use by statutory and non-statutory bodies.
  1. The Department of Health/HSE should take these contributions to the health and social infrastructure into account as well as the efficiencies that organisations have already undertaken over the past five years whenimplementing the findings fromthe Value for Money Review.

MEASURING OUTCOMES AND QUALITY

  1. Inappropriate units of measurement have been used whichin many cases are not suitable to the kinds of services and supports provided by theorganisations participating in this research.The need to be responsive to families and communities, and the kind of brokering work that is necessary can be challenging to measure in terms of standardised assessment systems. Equally, as disability-related needs vary by individual and across the life cycle, the need for flexible provision must be considered when improving systems of measurement for disability services.
  1. The Service Level Agreement (SLA) needs to be more sophisticated in terms of capturing cases where organisations contribute their own resources to services. In addition, the SLA process should be more aligned with an organisation’s own developing ways of measuring their effectiveness.
  1. Flexibility needs to be built into the funding and service delivery system to allow for the provision of services across geographical boundaries to ensure a more seamless service for people with disabilities and to avoid overly burdensome administrative procedures.
  1. The system should incorporate the learning from the outcomes related work undertaken by organisations as part of person centred planning, and this data should feed into national level performance indicators to more properly reflect the reality of service provision.
  1. Organisations should adopt a policy of continuous improvement in relation to data-gathering and record-keeping. In this regard, there is great potential for sharing information and learning between more experienced and less experienced organisations.
  1. Good practice examples of outcome measurementfrom other countries were identified in the research, for example the ‘Quality of Life Measurement System’ and the ‘Social Return on Investment’ approach. These models could be adapted appropriately to the Irish context and implemented through a collaborative process with the Department of Health and the HSE.
  1. Benchmarking against external standards was evident with regard to some organisations. This represents good practice and the learning from this work should be shared across the disability sector more broadly.

CONTEXT FOR THE RESEARCH

Recent reports on the HSE’s Disability Services Programme are guiding decision-makers on the reform agenda, adopting a very welcome person centred approach to services. The Value for Money Review aimed to evaluate the efficiency and effectiveness of disability services in Ireland wholly or partly funded by the HSE.It was acknowledged in the Reviewhowever, that the analysis was limited in terms of its coverage and understanding of community based services. Such services have developed from a community base, use a person centred model of service, and aim to promote choice, control and independence.In addition, the Review’s focus was primarily on the measurement of unit cost in the context of a fixed service delivery pattern of institutional care which does not reflect the entirety of services available to people with disabilities. This report attempts to explore the disability services and supports that were not reviewed in the report.

As highlighted in the quote from the Value for Money Review above, these examples of good practice can be used to inform decision-making in the wider disability sector.Voluntary disability organisations are an important resource in supporting people with disabilities to live in the community and many of the services provided by these organisations can and should be considered to be “mainstream disability specialist services and supports”. A key focus of their work is prevention, in terms of keeping people healthy, out of high cost residential services, and in a position to take advantage of services and opportunities available in community settings. This is because the organisations either provide or promote improved supports for people with disabilities to live in their own communities.

This research set out firstly, to describe the role, functions, and significance of community-based disability services and supports, and secondly, to explore in more detail features of good practice. The research also sought to explore improvements/developments in the extent, level and quality of the supports provided by the organisations, particularly in identifying and responding to individual needs.

PROFILE OF ORGANISATIONS

The organisations participating in the research support a very wide range of people, with different conditions, and needs, and have developed extensive knowledge and built up important networks of contacts and working relationships, in many cases over decades. Many organisations have built up a wide geographical reach and solid local ‘embeddedness’ over time, and consciously nurture this as one of their most valuable attributes. The organisations exhibit a strong, progressive, shared ethos, which focuses on rights and equality, the centrality of the individual, the promotion of independence, social inclusion, participation, and the opportunity to lead a life of one’s own choosing.

Organisations may mainly work with individuals in relatively stable situations; others may support individuals with progressive conditions whose health gradually deteriorates; and there are organisations which support people whose need is unpredictable due to the episodic nature of their condition. Most of the organisations now have management systems which allow for careful tracking of their clients, and the total number of clients, based on 13 detailed responses was almost 65,000[3].

The variety in the level and type of state funding provided to the fifteen organisations to support service provision is notable.Participating organisations received varying levels of financial support from the HSE, with five receiving less than 60% (some significantly less) and with four almost deriving their total income from HSE sources.Most organisations are continuously involved in seeking other income to enable the co-funding of supports, services and facilities, for example through fundraising and through securing funding from other statutory sources including FÁS, Pobal, the Family Support Agency, and Lottery funds, as well as EU project funding.

Over the past number of years, organisations have implemented cutbacks including for example, widespread staffing cuts, including at senior management level, reductions in salaries and on-going review of staffing rosters. Most organisations have also made significant reductions across all non-pay items, which clearly effectthe provision of services and supports, and the need to invest more time and resources in fundraising and other income generating activities to cover costs.