More inspections, more consultation and a move to integration in the community – Suzy Byrne
The treatment of disabled people in care is likely to yield scandals analogous to those recently unearthed affecting older people in nursing homes such as Rostrevor in Rathgar and Owen Riff in Oughterard. “Winterbourne View” was one such care home in the UK, privately-owned by some Irish investors and funded by UK local authorities, providing care to adults with autism and intellectual disabilities. In 2011 a whistleblower disclosed incidents of restraint of (and assault on) residents. This led to a BBC Panorama programme being made which broadcast incidents captured on hidden cameras. The investigations that followed uncovered hundreds of incidents of restraint and assault; and reports to the police that had been ignored. Eleven staff have since been convicted of assault and neglect and the home has now been closed.
Ireland may have many uninvestigated “Winterbourne Views”. We have many closed spaces where people with disabilities receive residential services. These spaces are rarely visited and are not inspected. But they are funded by public funds (as well as by private donations and charges paid by residents). We have limited protection for whistleblowers and many family members are afraid to speak out for fear of losing services. We also have no state framework for protecting vulnerable adults.
The provision of services for people with disabilities in Ireland rarely reaches the top of the political or news agendas except in the case of scandals or emergencies; and the focus is often on funding. We know little about the quality of the services provided or their effect on recipients. While the data is deficient, we do know that:
• A €1.5bn budget is spent annually on day and residential services for people with disabilities, nursing-home places and some community supports – dispersed by over 600 voluntary and private agencies funded by the HSE. Over 85% of this budget is spent on wages.
• Over 4,000 people with disabilities live in so-called ‘congregated settings’ in institutions of 10 or more people.
• An estimated 4000 people with disabilities live in clustered ‘community settings’ which bear many hallmarks of institutional care.
• There are also hundreds of people with disabilities who live in private nursing homes, many supported by tax breaks under FF/PD governments and funded by the HSE per bed contracted.
• Finally, while there are no accurate figures, there are thousands of people with disabilities being cared for by their under-supported families.
Over half of those living in institutions are between 40 and 60 years of age. Nearly a quarter of these people have limited or no contact with their families, perhaps only receiving one or two visits a year. Many do not have fundamental choices such as whether they have their own bedrooms, what they eat, who they spend the day with, or how they spend their money.
Those currently receiving support and living in institutional care are rarely seen in public or the community apart from when they can be seen travelling in vans emblazoned with sponsors’ messages or logos identifying the organisations providing their services.
Those who are living in private nursing homes also include people with disabilities who are inappropriately placed, simply because they are unable to live with their families. All of these services, whether in community houses, congregated settings or nursing homes remain uninspected and out of sight.
Standards were drafted and published in 2009 for residential services for people with disabilities but have not been implemented due to lack of funds. The standards could have been implemented through the service agreements funding disability services but the focus is on numbers rather than service quality.
In 2011 Kathleen Lynch, Minister of State for Disability committed to providing the funding to ensure residential services for people with disabilities were independently inspected by the Health Information and Quality Authority (HIQA), as promised in the Programme for Government, but no date has been announced.
During the Dáil recess last year the HSE published a report on congregated settings entitled “Time to Move on”. It recommended that these facilities be closed and those living there a) be moved to housing in the community of no more than four people per house, b) be supported to live with their families or other families or c) to live independently. The report has challenged service providers to address the living conditions of those in their care. However the seven-year target set for the closure of these institutions is unrealistic . The report recommended that new facilities be dispersed throughout the community. Traditional disability providers would be required to work with housing providers and mainstream health and community services. This would challenge mainstream providers who have diverted disability issues to the comfortable margins and to specialists.
There is over thirty years of experience internationally in the provision of supports and accommodation to people with disabilities outside of institutional care. Supporting people to live in the community can be achieved and does not cost more than providing institutional care. They also point to the failure of clustered housing developments in integrating people with disabilities.
A national debate on Disability is long overdue and should not just concentrate on how great the Special Olympics were. It is nearly ten years since the 2003 games and we still have people living in sub-standard conditions. A dialogue is needed where cost is not mentioned. It does not cost more to provide for the rights of dignity and respect and to a quality of life. The disabled should be supported by all, and not just by the organisations paid to provide care and support.
Suzy Byrne is a political blogger at Mamanpoulet.com