Dr. Kathleen MacLellan:

I thank the committee for the invitation to be here today. I am accompanied by Ms Patsy Carr, principal officer of the disability unit in the Department of Health.

A major reform programme is under way in disability services funded by the Department of Health called Transforming Lives. This programme is driving the implementation of the recommendations of the Department of Health’s 2012 value for money and policy review of disability services. Transforming Lives supports national policies that will deliver person-centred models of care services to ensure that people with disabilities are supported to make the types of choices about their lives which are available to everyone else in society. We call this the social care model and it is a significant shift in the approach of the Department to supporting people with disabilities through the health and social care services.

In a housing context, that includes implementation of the 2011 Time to Move on from Congregated Settings; a Strategy for Community Inclusion. I understand the committee has a particular interest in the de-congregation programme. First, I would like to clarify who our health care and social care service users are. About one in seven people in our society has a disability, over 90% of whom are supported through ordinary community health and social services rather than specialist ones. This mainstream-first approach is underpinned in the Disability Act 2005, which requires public bodies like the HSE to include people with disabilities in their mainstream services. The fundamental principle underpinning this disability policy is to support people with disabilities to maximise their full potential and to live ordinary lives, as independently as possible, in the community.

For those with more complex needs, general community health and social care services are complemented by specialist community based disability services which deliver specialist services to the remainder of those with a disability who account for approximately 9% or about 56,000. The range of services includes early intervention; multidisciplinary therapies, including habilitation, rehabilitation and behaviour support; staffed supported housing, including specialist end-of-life care; respite care and short breaks to support carers; day services and support for community engagement; personal assistance and home help; assistive technology; and peer support organisations.

The Health Service Executive budget allocation for disability services in 2019 is €1.9 billion, of which some 65% is allocated to fund supports for those living in group homes or other residential arrangements. Up to 80% of these disability services are delivered on behalf of the HSE by the voluntary sector, while the remaining 20% are provided directly by the HSE. In addition, a small number of services are delivered by private providers.

The vast majority of the 56,000 people with disabilities, including those with significant disabilities who are accessing specialist services, live at home with parents or other family members. On full-time care, I note that around 8,500 people who principally have intellectual disabilities live in supported housing. Some three quarters of supported housing for people with disabilities is ordinary housing in the community. A typical group home has four residents with disabilities who are assisted by support staff. A congregated setting is defined as one where ten or more people with disabilities are living together in a single unit or campus-based. Ten years ago the number of persons living in a congregated setting was 4,000. By 2012 that figure was 3,400. The 2016 programme for Government set a target to reduce the number living in congregated settings by one third by 2021. That target will be met. In line with Government policy, large residential institutions and campus-based housing are being phased out as initiatives that underpin and enable a new model for residential support in the mainstream community, where people with disabilities are supported to live ordinary lives in ordinary places, become the norm. I clarify that the decongregation policy is focused on HSE funded services and does not include persons with disabilities aged under 65 years who live in nursing homes.

Inclusive communities and community activities, disability friendly environments and buildings and universal design are all parts of the wider canvas of measures to enable people with disabilities to live normal lives. The process of moving individuals from large congregated settings where many have lived for all of their lives involves fundamental change for the individual at the centre of the move. The transition to community housing requires person-centred planning which supports and encourages individuals to make their own choices about where they want to live and with whom they wish to share their home. This is consistent with Article 19(a) of the United Nations Convention on the Rights of Persons with Disabilities which was ratified by the Government last year. In addition, other work necessary to facilitate transition continues. It includes sourcing properties in the community and carrying out modifications required to meet individual needs or Health Information and Quality Authority, HIQA, requirements for registration and compliance. It is noteworthy that significant progress has been made in this area.

In its first five-year progress report, covering the period from 2012 to 2017, inclusive, the HSE reported that 661 people had moved to the community, that 592 people had passed away and that 222 people had been admitted or readmitted. The data show that people of all ages have successfully transitioned to community housing. The average age of those who have moved is 52 years, while the average length of time spent living in a congregated setting is 28 years. It is notable that several people have been living in congregated settings for more than 50 years. Positive outcomes are reported for those who have transitioned, regardless of the level of disability support needed. For example, 32% of those who had transitioned had a moderate learning disability, while 39% had a severe learning disability. Between 2016 and mid-2019 the transition of 272 people was completed across ten priority sites. The model of housing provision for those who transitioned varied, including the HSE disability capital programme, capital assistance scheme, CAS, arrangements or private rental. Funding from the service reform fund, a joint initiative of Department of Health, Atlantic Philanthropies and the HSE, towards the cost of moving to a person-centred model of service and support has played a very important role in ensuring the success of each move.

We are on a learning journey, but the key enablers of successful transitions which have so far been identified are engagement, communication and focused leadership. The challenges include the need to manage the communication process, gaining access to suitable properties and the availability of revenue to fund community based supports. While the process can take time, the priority is to do it right, do it well and maintain the focus on the outcomes achieved for each individual. The committee will be interested to note that several congregated settings have closed and that the number of people living in houses with more than three others has reduced significantly. The National Disability Authority, NDA, is conducting an in-depth evaluation of the decongregation programme which will include interviews with those who transition to the community, taken before and after the transition. It will be a very welcome support for our learning on what the key enablers are and what enhances the move to the community. It is notable that between 2012 and 2017, the NDA was interviewing about 150 individuals before and after their move. This afforded us a lot of learning in moving our programme forward. The evaluation programme is called "Moving In". Interviews taken two years after transition show that many of them were aged up to 78 years. We are talking about an aged community moving out into the community from congregated settings where they have lived for much of their lives.

Moving to the future, work is ongoing under the Sláintecare action plan to establish future social care needs for people with a disability. Building on the 2018 report on future needs of disability services, we are extending forecasts of needs out to 2032 in order to support Department of Health planning for future social care needs. Our disability demographics indicate that the number of people with intellectual disabilities who will require a supported housing place in future years will grow as a result of changes in the size and age structure of the disability population. Of particular concern is the number of older people with disabilities who are being supported by very elderly parents or siblings. This is not sustainable, given both the individuals' increasing dependence as they age and the failing health and strength of those on whom they depend. Tailored population projections of the number of people with intellectual disabilities will forecast the numbers who will require housing support in the future. In addition, provision is required to meet the supported housing needs of people with physical or sensory disabilities, or those with an acquired brain injury who account for an additional 10% of the overall requirement for specialist disability supportive housing.

Our goal within the Department of Health is to provide care and support for all service users at the lowest level of complexity and as close to home as possible, supporting people to live independently in their own community for as long as possible. Providing it for people living with a disability requires cross-departmental engagement on activities such as housing, the environment, transport, social protection and education. The important principle that the needs of people with a disability extend well beyond health service provision is recognised in the national disability inclusion strategy. The Department of Housing, Planning and Local Government commits specific funding for the delivery of homes to support people transitioning to the community, as the committee has heard. Since 2014, several innovative projects have been funded in the housing sector to test and demonstrate the feasibility of different approaches to the funding, design and configuration of housing for people with disabilities. The Department of Health looks forward to continuing to work closely with the Department of Housing, Planning and Local Government to further develop innovative and responsive housing solutions to meet the needs of those with a disability in line with the strategy for community inclusion.

I again thank the committee for its invitation. We are available to answer questions its members may have.