ANALYSIS:More than 4,000 people with disabilities are still living in inappropriate, outdated facilities, writes
CARL O'BRIEN
MANY LIE behind high walls, down long driveways or isolated from the communities around them.
For those admitted to these institutions in the past, contact with family members was rare. Most were simply forgotten about. That was how society deemed it acceptable to treat "unreasonable" members of the population in the 18th and 19th centuries.
Today, most developed countries have closed down large-scale institutions for people with disabilities, or are close to doing so. But in Ireland, more than 4,000 people still reside in outdated, inappropriate facilities that are unable to provide acceptable levels of care.
Most have severe or profound intellectual disabilities and have been living in these settings for decades; a large proportion only have minimal access to vital therapies or activities.
Health authorities have long spoken of ending the practice of institutional care and moving towards a community-based model which would allow residents greater independence and choice.
But the practice of admissions continues. While almost 620 were transferred to more appropriate community-based settings between 1999 and 2008, institutions admitted just over 690. If anything, progress has been sliding backwards.
The findings of the working group on these "congregated settings", established by the Health Service Executive (HSE), show that the rights of many of these people are being flouted on a daily basis. There are major concerns over their lack of privacy and dignity, with many people changed and washed in communal areas, and the lack of access to personal belongings.
Many staff try their best to provide acceptable levels of care and support in these environments - but it is an uphill task.
As the report notes, their best efforts cannot compensate for isolation from community, lack of individualised supports, poor quality environments or a deeply embedded culture of dependence.
One project manager is quoted as saying: "I do not believe it is possible to respond to the needs of these clients, to respect their rights and to treat them with the dignity they deserve on the current staffing levels . . ."
Another commented: "Severely disabled service users [in the institution] do not have a day programme, or if they did, it is very limited sessions, maybe once or twice per week. Some people get no day provision at all."
The proposals of a working group established by the HSE into these "congregated settings" are ambitious. It proposes closing all existing 72 institutions within seven years and replacing them with more suitable supported housing in the community.
It envisages people with intellectual disabilities having the same entitlement as other citizens to health and social care services such as home-help, public nursing and primacy care.
They should also have access to more specialised services and hospital services based on individual assessment.
The big question now is: will it ever happen? Even in good economic times, this plan would test the HSE, voluntary bodies, housing authorities and government. Against a backdrop where funding for disability has been cut by 5 per cent in recent times, it will prove even more challenging.
The report says that running community-based facilities should be no more expensive than institutions. It also poses questions about whether existing funds are being spent effectively. Almost €500 million - or 40 per cent of the entire disability budget - is ploughed into these congregated settings each year.
Staff are also well paid, at least compared to the UK. For example, in Wales, staff at disability units are paid relatively modest wages. They include support workers (£13,319/ €15,881), service managers (£21,835/€26,035) and area mangers (£31,077/ €37,055).
In Ireland, by contrast, salaries are significantly higher for staff such as social care workers (€34,357 to €45,939) and social care managers (€55,938 to €63,885). Service providers in Wales are free to determine salaries. In Ireland, they are set with reference to scales set by the Department of Health.
There are also lessons to be learned from other jurisdictions which have gone about closing down institutions. Norway's experience, for example, revealed that legislation was crucial to ensuring funding was not diverted into other areas of the health sector.
The working group report says its proposals are feasible and imperative. "Knowledge brings with it an obligation to act," the report says.
We know that people with disabilities benefit dramatically when they have access to the right kinds of support and therapy.
Just ask Bernadette Dolan, whose sister Geraldine has been thriving since moving out of an institution - St Peter's in Castlepollard, Co Westmeath - to a smaller, family-type bungalow.
"She's been out bowling, swimming. They're able to do the things they're interested in," Bernadette told this newspaper earlier this year. "She has her own room. And for those who are able, there's a bit of extra independence. It's the opposite to institutional living."
Is the Government willing to act for others?
So far, the evidence hasn't been inspiring. Successive governments have pledged to end the practice of placing disabled people in inappropriate settings, but have failed to do so.
In 2001, then minister for health Micheál Martin announced a "complete programme" to transfer people with intellectual disabilities in psychiatric hospitals to appropriate accommodation by the end of 2006 at the latest. That never happened.
People with disabilities, their advocates and staff will hope for more sustained political will this time around.
DISABILITY: THE NUMBERS
4,000: the number of people with intellectual disabilities living in "congregated settings" of 10 people or more.
1,452: residents who have not had contact from a family member for a year or more.
115,000: The average cost in euro per resident in a congregated setting.
385,000: The most expensive cost per resident in euro in a congregated setting.
340: The number of residents in the largest institution still operating.