From the brave to the forgotten

CRIPPLING budget cuts to the HSE-funded voluntary bodies which cater for people with intellectual disabilities has dominated the headlines this week.

Cuts and proposed cuts to the budgets of the Brothers of Charity and the Daughters of Charity have been the most prominent cases, with both organisations speaking out loudly against threatened services and the closure of respite centres.

The issue of respite care has been proven to be an emotive one as it is a lifeline for families who, on a full time basis, care for seriously disabled children and adults.

Although Brian Cowen assured the Dáil this week that respite services would be the last to go, cuts have already been experienced in several locations.

Although talks are underway with the Minister with Responsibility for Disability John Maloney and several agencies with a view to restoring services, the suggestion that frontline services for needy families can be maintained under the proposed cutbacks is seen as highly questionable. As is the assertion that charities built up reserves during the good years. Any allocated HSE budgets are generally spent in full in that year.

Brian O’Donnell, the head of the National Federation of Voluntary Bodies, which represents 62 voluntary groups, insists they have scrutinised every penny to make savings this year. He is adamant there is not much more “value for money” to be found behind the scenes.

Many too, have questioned if the HSE itself is making those “back room” savings and clearing out top heavy management structures, as it has urged the charities to do.

Although this week’s debate has focused on bodies funded by the HSE, the executive is making its own cutbacks.

We do not hear about them, however, as HSE staff generally do not speak out, as is the culture within the organisation.

There is one man speaking out, however.

Noel Giblin works at a HSE “congregated” service – meaning 10 or more people live in one house – called Áras Attracta in Co Mayo, and is the Western Regional Representative of the Psychiatric Nurses Association.

Áras Attracta is a residential and day care service for people with intellectual disabilities, and provides for 117 residential clients and 18 day care clients. There are 119 nurses, 43 care staff, 7 maintenance staff and 11 administration/management staff working there.

Mr Giblin does not know why a service which caters for 118 residents needs 11 administration/management staff.

The HSE maintains Áras Attracta is a modern purpose-built campus.

Mr Giblin disputes this, as it was built in 1982.

Two weeks ago, a bungalow in Áras Attracta, with ten people living in it, was closed due to cutbacks and the people living in it were moved into other houses in the complex.

On the face of it, the cutbacks at Áras Attracta may not sound so bad. But on closer inspection what it means is that clients are now increasingly sharing bedrooms, living in cramped conditions and living in houses with people who have different needs to theirs.

There is now the same amount of staff for nine clients as there previously was for six.

One man has actually moved back home as he does not want to share a bedroom. That is regression.

According to Mr Giblin, who campaigned vociferously against the cuts, the mood among staff at the centre is “huge disappointment”.

“We feel we have gone back about 10 or 15 years and that we are very far away from delivering what policy documents say we should be,” he said.

“We have people in dorms and three houses with ten people in them. Our staffing levels are significantly below what would be considered ideal.”

Last year, the report of the Working Group on Congregated Settings warned that more 4,000 people with disabilities in Ireland must be moved out of unsuitable accommodation in congregated settings, some of which are directly run by the HSE, but most of which are run by voluntary bodies.

The picture that emerged was one of a group of people who live isolated lives apart from any community and from families. Many experience institutional living conditions where they lack basic privacy and dignity. Most have multiple disabilities and complex needs.

Almost half of those with intellectual disabilities who are in a full-time residential service are living in a congregated setting of ten or more people. Just over half of residents have a single bedroom. One in ten are living at twelve or more people to a bedroom. Nearly a quarter of residents are living at four or more to a bedroom.

More than 70% are considered unable to dress themselves independently; about half are incontinent; and about 40% are unable to walk independently. A third need help with feeding, and almost 90% with washing themselves. Only a third can speak in sentences.

Staff considered about half the residents to exhibit challenging behaviour.

These are the truly forgotten people. Because unlike the brave and formidable thousands who took to the streets this week to defend their children’s rights, most of these people do not have families speaking out for them or politicians taking up their cause.

Findings from the report showed a majority of residents in congregated settings had communication difficulties – and a third were not in regular contact with their families.

So while the fight must go on for respite and day services, the 4,000 plus people living in full-time residential care with no inspection and little or no family contact must also be remembered and fought for.


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