It is 2009. Prepare for a shock. Over 8,000 adults and 400 children with intellectual disabilities live in full-time residential care facilities in Ireland. 80% of which are run by voluntary bodies. Another 20,000 also attend on a part –time or occasional basis. These facilities receive funding from the State.

No one inspects them, how-ever that’s over 28,000 vulnerable people that the State doesn’t check up on. Many organisations do Trojan care work but is it right, in this day and age, especially in light of the recent Ryan Report into abuse. That nobody is monitoring what goes on? New national standards have now been published for care in these homes, but it could be years before inspectors arrive on those doorsteps.

“We are very disappointed,” says a spokesperson from Inclusion Ireland, the national organisation for people with intellectual disability.“We believed the standards would have statutory weight as soon as they were published. Now we’ve been told the money is not there to regulate and inspect, and we can’t believe it. We’ve been raising this issue for years.”“

In the last week,”says CEO Deirdre Carroll, “cost has been put forward as the reason inspection of  residential centre for adults will not happen. Nearly 400 children with intellectual disability are also in full-time residential places, where is no inspection and no standards.”

The Child Abuse Commission Report, she says, outlines decades of abuse in services for children with a disability. “It clearly states that children with special needs are very vulnerable. Also, The McCoy Report in 2007 outlined abuse in a disability service in Galway. In Leas Cross, a person with an intellectual disability [died as result of abuse]. “How many more reports do we need before the Government ensure services for children and adults with a disability must meet certain standard and independent inspectors are allowed to enter services to ensure standards are met?” 

WHAT IS EXPECTED

The new standards published in May lay out what is expected of a provider of services. They also specify what care a person with a disability is entitled to in terms of rights, quality of life, staffing, health, anit-discrimination, physical environment and management.Without legal backing, service providers only have to “self-assess” and “work towards regulation,” however.Dr Marion Winton is Chief Inspector of Social Services with the Health Information and Quality Authority, the body that published  the new standards. “I’m very aware that residential services for people with disabilities  have never been regulation,” she says “The new standards are badly needed. How badly I can’t say, because these facilities have been inspected.”

“There has never been one set of national standards before, so that means people didn’t real know what they  were supposed to be providing , and people using  the services did’t  know what they could expect.”“It’s the first step for any service, to know what’s required of them. It’s also an important first step towards enabling people with disabilities to live in a safe, caring environment”. 

REGULATORY FREAMWORK NEEDED

Dr Witton says she will be pressing strongly for a regulatory framework. “Standards are an good tool to stop the wrong people from entering the service looking after vulnerable people. You need a gate-keeping system, a registration system that says “no, you’re not suitable to work here”, I believe vulnerable people need that kind of protection”. It wouldn’t be fair or constitutionally rights.

Dr Witton believes, to publish the standards one day and start regulating them the next. “People need to know what it is they have to to do,” she says, “We will now be talking to the Department about the best way to start monitoring the services. There is a lot of discussion still to be had, but the Department has said they haven’t got a date in mind for regulation because of the current financial situation.”

HOW THE STANDARD WERE DEVELOPED   

The standards were developed after consultation with a wide range of interested parties, from HSE to individual service users. “The standards have prompted a huge amount of enthusiasm to look at the way care is provided,” Dr Witton says. “We are interested in people being enabled to do things to there maximum potential, rather than always being told they can’t do it” says Dr Witton.

“Many people institutionalised, so it takes long time to build up confidence, but it will come. With the standards, we have given them the vision of how care can be provided in the future and how people can have self-determination”. 

ABUSE CAN TAKE OTHER FORMS Most people think of abuse as physical, sexual or involving neglect, Dr Witton says, but abuse can happen in other ways. She cites the example of people not being allowed to do certain things. “It can happen where people are restricted or having no choice over what happened to them. We will be asking service provides how they think they can improve.”

“For example, if you’ve got 100 people in a setting, getting a plate meal every day, how could you give people more choice? Could people serve themselves, have an input the menu, shop for or help prepare the food? The easy option is that they hand out everybody the same.”We hope the standard will open up the conversation in people’s minds and say; ‘Wait a minute just because someone is less able don’t mean they don’t have some say in their lives’. It is heat warming when you see people looking possibilities rather than restrictive practices” says the doctor. 

UNACCEPTABLE IN THIS DAY AND AGE

“We are not going to close places down and make people homeless when we regulate, but we would expect to see would expect to see planning for more appropriate accommodation.“I think the public feel very uncomfortable  about the fact that there are people living in institutional settings, They are unacceptable in this day and age I think,” says Dr Witton.

In the meantime, service provides are invited to check out the online guidance tools on www.hiqa.ie that set out what best practice is in areas like quality of life, staffing,  protection and right. They can then work towards meeting those standards when regulation begins.