OPINION:A new poll shows great public support for those with intellectual disability, but the State is failing to live up to it, writes Deirdre Carroll.
THE FIRST line of U2's song Oneasks "is it getting better?" and that's the question 300 family members and carers of people with an intellectual disability will be asking this weekend.
They will be attending the annual conference in Tullamore of Inclusion Ireland, the National Association for People with an Intellectual Disability.
The Government's disability strategy was launched in 2005 with great fanfare. But in a new national poll commissioned by Inclusion Ireland, 63 per cent of respondents felt that people with intellectual disability were treated worse than others in society.
The main findings of the poll show tremendous support for people with intellectual disability. 98 per cent said they should be given the opportunity to live as normal a life as possible; 97 per cent said they should be given the opportunity to work; and 95 per cent felt that people with an intellectual disability had a contribution to make to society.
When questioned on rights to services, 97 per cent said people with an intellectual disability should have the right to health and education services as recommended by an independent assessment of need; 88 per cent said that children should be able to attend their local primary schools; and 86 per cent said they should be able to attend their local secondary schools.
The poll of 1,000 adults was held by Behaviour & Attitudes Marketing Research last month.
Inclusion Ireland has never doubted the public's support for people with disability. However, there are growing doubts about the Government's ability to deliver its disability strategy.
The Disability Act 2005 was not the rights-based law people with disabilities and their families wanted, and it seems it was also not what the public wanted. The Government said granting such rights would put an unqualified duty on the State to provide services. It was argued that the disabled wanted "superior rights" to other groups and that money would have to be taken from cancer services and services for the elderly to deliver them.
The Act makes one exception in that it gives the right to an independent assessment of health and education need, without regard to resources. Paradoxically, this is followed by a statement describing the services that can be provided, but based on available resources. At the time this was heralded as an impressive concession.
The Health Service Executive (HSE) is facing severe budget deficits and with nothing in the Disability Act to ringfence money for disability services, delivering an independent assessment of need, never mind providing the services needed, will prove difficult. The dearth of therapists, particularly speech and language and occupational therapists, has been further exacerbated by HSE recruitment embargoes.
The €900 million multiannual funding promised from 2006-2009 is hard to track. Service providers are talking about pressure on their services and feel compromised in their ability to provide for those in their care. Hardly any inroad has been made into waiting lists for residential care for those living with elderly parents, and young parents face great difficulties in accessing respite care.
The public rightly feel that people with an intellectual disability should be able to live as normal a life as possible. Yet there are an estimated 1,000 people with an intellectual disability living in psychiatric hospitals or "de-designated units", which is accommodation on the grounds of psychiatric hospitals. Others are living in Dickensian-style buildings to which they were moved some years ago. Campaigner and member of Inclusion Ireland Annie Ryan has accurately described people in these places as living "half lives".
It is encouraging to hear that the public feels people with disabilities should have the right to work. An estimated 7,000 people with disabilities work in sheltered workshops doing real work but have no employment rights, nor do they receive a proper wage. The HSE is reviewing this but will the recommendations be implemented?
Bertie Ahern and Brian Cowen have stated their commitment to people with disabilities and their sincerity is not in doubt. Cowen, as a former minster for heath, substantially increased the funding for people with disabilities. He is on record as saying "people with disabilities should get the services they need, not what service providers can provide". He will hear this view endorsed in Tullamore when he joins local politicians for a Q&A session this evening.
However, to provide services in this person-centred way requires accountability and transparency for the public money provided, as well as the vision to change an inflexible and outdated system.
Is it getting better? Perhaps the answer is that "it's beginning to, but a great deal more needs to be done" - to paraphrase a famous election slogan. The public is ready to support change but is the Government ready to enforce its own disability policy?
Deirdre Carroll is chief executive officer of Inclusion Ireland (National Association for People with an Intellectual Disability).