Urgent action needed for reform and protection of disabled children and adults


OPINION:JUST UNDER three years ago, in May 2009, we were reeling from the shock of the horrors inflicted on defenceless children as described in the Commission to Inquire into Child Abuse Report (Ryan report).

The report stated that children with intellectual disabilities and sensory impairments were especially vulnerable. The physical and sexual abuse of children with disabilities must surely rank as one of the most heinous crimes perpetrated by the State, or by those whom the State entrusted with their care. Judge Ryan made a clear call for all services for children to be subject to independent and unannounced inspections.

Today we are still waiting for this to happen for the more than 370 children and nearly 4,000 adults living in disability centres throughout the State.

At present, every vulnerable group living in residential spaces, be they resident in psychiatric hospitals, nursing homes, prisons, children’s residential centres, special care units or detention schools, is subject to some form of independent inspection.

So why do children and adults with disabilities remain “outside the Pale?” Why do we fail to inspect places, paid for by the Irish taxpayer to the sum of nearly €1 billion a year, where children and adults with disabilities live. Evidence points to the high risk of sexual and physical abuse and neglect of this group. So why are we continuing to ignore them?

In 2009 I was invited to sit on a Health Information and Quality Authority (Hiqa) advisory group for the development of national quality standards for services for children. These standards were to cover residential and respite centres for children with disabilities. Draft standards were developed and in February 2010 a public consultation process was initiated. Last Thursday, Hiqa launched a document, National Standards for the Protection and Welfare of Children, and I thought, finally, here are the standards Inclusion Ireland has fought for over the years.

You can imagine my disappointment on discovering that this set of standards excluded children with disabilities and related only to HSE Children and Family Services.

The rationalisation for this omission is that the children with a disability who reside in the 150 centres offering residential or respite care are not in the care of the State, although they are cared for by the State – a legal nicety that prevents them from being inspected by Hiqa under the Child Care Act of 1991. This legal nicety could have easily been amended by Minister for Children Frances Fitzgerald and her new office. The previous government committed to the independent registration of all residential centres and respite services for children with disabilities by the end of 2010.

As I prepare to step down as chief executive of Inclusion Ireland, my biggest regret is that, despite the years of work, attendance at committee meetings, submissions to the HSE and other statutory bodies, and being consulted by just about everyone about everything, there is still little sense of urgency about introducing independent regulation of this multimillion-euro industry.

In trying to explain why there has been so little action around the protection of disabled children and adults it is important to know that many of the children described in the Ryan report went on to adult services run by the same religious organisations. Some of the witnesses sought reassurances from the commission that they would not be punished or “get into trouble” for attending the commission. Others stated that many of their co-residents would not be able to give evidence as they could not communicate independently. Heartbreaking stories.

Immediate action is needed. At a minimum the Minister should prepare the necessary amending legislation to provide a legal basis for the inspection and registration of residential centres for children with disabilities so that they can be covered by the new Hiqa standards.

Minister for Health James Reilly and Minister of State with responsibility for disability Kathleen Lynch, must, without further delay, implement the 2009 Hiqa Draft National Standards for Residential Services for Adults with Disabilities.

Lynch is attending Inclusion Ireland’s annual general meeting this afternoon in Wexford. It would be wonderful to hear from her, at my last agm, that an independent regulatory system of oversight will be introduced by a set date as an essential prerequisite of her reform agenda.

Deirdre Carroll is chief executive of Inclusion Ireland (national association for people with an intellectual disability)