Parents' rights to information on disabled children’s care “neutered”

Video: Parent Dermot Ryder gives his view on changes to children’s homes regulations /

By Niall McCracken

THE father of a severely disabled child has said a fundamental right of parents here in safeguarding their children’s safety has been removed with a new amendment to the legislation that regulates the management and conduct of children’s homes in Northern Ireland.

The amendment to the Children’s Homes Regulations (NI) 2005, means that parents of children in respite care will no longer be entitled to monthly monitoring reports. The reports contain information about the running of the home.

The changes also mean that parents no longer have a right to oversee the plan that provides the way their children are looked after.

Dermod Ryder’s 16 year-old daughter Katie has a rare chromosome abnormality, is profoundly learning disabled, autistic and epileptic. She has a mental age of around three and is in need of constant care.

In September 2005, she returned from respite care with suspicious bruising that had been noted on her admission, but her parents were only informed when they flagged up the issue with the care facility. The respite unit had been the scene of an assault on a resident in June of that year for which nobody has ever been brought to account. RQIA instituted an independent review.

Dermod however was refused access to the monthly monitoring report, which under the legislation at the time, he was entitled to.

The Department of Health says the new changes to the regulation were introduced to ensure that they “do not compromise the right of children in residential care, their families and staff to have private and sensitive information held in confidence.”

The need to amend the regulations was prompted by the discovery of a “loophole” in the previous regulations highlighted in an article by The Detail on the experiences of Mr Ryder and his daughter, Katie, last August. It showed that a parent, usually of a disabled child who is eligible for residential respite, was classified as the “placing authority”, when their child stayed in residence for less than 24 hours.

This meant they were entitled to receive the monthly monitoring reports prepared in respect of the conduct and running of the home and to have controlling input to the care plan drawn up for their children whilst they were in the home. The “placing authority” also had the right to give or refuse consent for the use of electronic monitoring of a child whilst in a residential unit.

In May of this year the health committee approved the proposed amendment that overrules a parent’s right to this information and removes their rights to effectively control the way their children are cared for.

Mr Ryder believes the amendment has “neutered” the rights of parents to access information about the respite care of their children.


The Department issued its consultation document in December 2010 – the need for amendment having been recognised by July 2009. In the months that followed, Dermod identified what the Department, the Trust and RQIA would acknowledge as “an anomaly” in the legislation that meant parents were lawfully entitled to these reports.

The monthly management report is essentially a written report on the conduct of a home or care facility. Its author may interview the children accommodated there, their parents, relatives and persons working at the home as appears necessary in order to form an opinion of the standard of care provided.

This process also involves an inspection of the premises, its daily log of events, records of any complaints and a representative sample of records.

In the original Children’s Homes Regulations (NI) 2005 it stated that copies of the report were to be provided to:

( a ) The Regulation and Quality Improvement Authority

( b ) The registered manager of the children’s home

( c ) The Directors of the Trust

( d ) The placing authority

In the Children Order (NI) 1995 a child who is accommodated by a trust for more than 24 hours becomes what the legislation defines as “looked after”.

Under the Children’s Homes Regulations (NI) 2005, the Trust then becomes the “placing authority” for a “looked after” child accommodated in a registered children’s home. However, where the accommodation lasts for less than 24 hours, the child is not “looked after” and the parents become the “placing authority.”

Dermod successfully argued that as his daughter would not stay in the respite unit for longer than 24 hours at a time, both he and his wife were the “placing authority” and therefore had a right to receive the management report.

The trust eventually offered to provide Dermod and his wife with a redacted copy of the monthly monitoring reports for any period their daughter was to stay at the respite centre, but without complete access to the full report Dermod saw this, as further insult to injury.

Dermod was eventually advised that the department had reviewed the regulation in relation to the definition of “placing authority” and would be carrying out a targeted consultation in respect of this regulation.

Dermod had hoped that the consultation would make recommendations concerning the content of the reports and rule that they should not contain personal data that might make them inaccessible to parents.

The Department carried out the consultation and Dermod submitted a very detailed analysis of his objections. On being approached about this last year by the Detail, the Department at first, denied that it planned any changes to the legislation but when confronted by the evidence, it changed its mind.


In March this year the health committee looked at the possible amendment and heard evidence from representatives of DHSSPSNI.

During the meeting members of the committee heard that under current regulations, the parent in question –Dermod, was in fact entitled to the monitoring report, but as monitoring reports contained “sensitive, confidential information about other children, their families and staff working in the home”, it needed to be amended.

When pushed by its members, Health Department officials giving evidence could not provide the committee with an answer as to why the “parent in question” (Dermod) had such opposition to the amendments. The Committee was assured that he had no concerns about the home in question.

However, as previously reported by The Detail, Dermod did have concerns about the home in question. They had been the subject of protracted correspondence between him, the Trust, RQIA and even the Department. He detailed some of them in a letter to the Committee following the March committee meeting.

The fact that Dermod had sent a letter to the committee was only briefly referenced in the May meeting where it was revealed that the amendment had in fact now been passed.

Dermod claims the committee is clearly not concerned about the fact that the Department has misled it by mis-stating his position.

He said: “In that by design or by intention … or they just forgot to mention my concerns, they (the Department), and not for the first time, have sought to put up a smokescreen around this amendment. They are either incompetent or there is something else going on.

“I can’t understand why the Committee is so laid back about the Department’s inability to correctly report some basic facts to it? Does this say anything about its role as scrutineer of the public service in the public interest?”

The Department proposed to make two amendments to the regulations. The first amendment removed the requirement for the owner of the children’s home to provide a copy of monitoring reports and reviews of quality of care reports when requested by children in the home and their parents.

The second amendment involved the definition of the placing authority in the regulations. Before the amendment, the trust was the placing authority for looked-after children only: that is children who are in the care of the trust, including those who are accommodated by the trust for a continuous period of more than 24 hours.

A child spending less than 24 hours in a children’s home is not in the care of the trust, and, therefore, the child’s parent is the placing authority.

The department proposed that the definition of the placing authority should be changed by removing the reference to a looked-after child. The effect of the change is that any trust that makes arrangements to accommodate a child in the children’s home, regardless of the length of time that the child is in the home, will be the placing authority for that child, regardless of whether the child is actually looked after.

These proposed changes were approved by the committee in May this year. They remove the right of parents and children to receive monitoring and quality of care reports. They also remove the rights of parents to oversee the care plan for their children and the use of electronic monitoring.

Sue Ramsey MLA, Chairperson of the Assembly’s Health Committee said:

“The Committee take seriously all proposals for changes to legislation put forward by the Department. In the case of the Children’s Homes (Amendment) Regulations (NI) 2012, the Committee decided the subject matter warranted a formal engagement with departmental officials to understand the policy rationale for the change to the legislation.

“To that end the Committee questioned departmental officials in detail on the proposals contained in the Children’s Homes (Amendment) Regulations (NI) 2012 on 7 March 2012. After hearing the evidence the Committee was satisfied with the Department’s proposals, and the Children’s Homes (Amendment) Regulations (NI) 2012 was formally approved by the Committee on 16 May 2012.”



Dermod says the new regulations have serious implications and are another step in stripping parents of their right to information.

“It means now we don’t have any input into the preparation of the Care Plan and what the parent may say can safely be discarded by the Trust as placing authority. Really the trust as registered provider is now responsible to itself. This removes any vestige of accountability.

“The rationale for a placing authority is to separate powers – to provide a dual approach to the well-being of the child in a children’s home; to separate the person who places the child and the person who cares for the child. That has now gone.”

From the beginning Dermod has maintained that the reports should never have contained any personal information relating to children and their parents, as there is no lawful requirement to put such information in them.

“I have repeatedly asked the lot of them why there is a need for this information to be put into the report and they have all repeatedly remained silent.

“The regulations specify the matters to be monitored by the person who prepares it. They contain no provision that requires detailed or specific references details on parents or any allusion to personal data of children to be entered into the report. Indeed the regulations specifically provide that children’s data is not to be disclosed but expressly safeguarded.

“There is therefore no reason why the format of the report should not have been altered to remove from it all traces of personal data pertaining to children and their parents and to have it address matters pertinent to the conduct and running of the home; matters which are of interest and relevance to parents of children placed therein."

A spokesman from the Department of Health said: “The Children’s Homes Regulations (Northern Ireland) 2005 are being amended to restrict the sharing of reports, often containing very sensitive information about individual children residing in a home.

“Further to the amendment, placing Trusts, the Regulation and Quality Improvement Authority (RQIA) and the Commissioner for Children and Young People will continue to receive these reports, either automatically or on request.”

“The restriction will prevent the sharing of reports with children in the home and their parents. However, this will not affect the rights of children and families to access bi-annual inspection reports on each children’s home produced by RQIA or their individual rights under Data Protection and Freedom of Information provisions.”

Dermod however, remains clear about what the legislation means for parents like him throughout Northern Ireland.

He said: “I have tried to get information under FOI and data protection in the past and what I received back was sheets full of inked out information and redacted data. As for RQIA reports; they only happen twice a year and in my opinion, the inspectors see only what they are allowed to see and don’t give an insight into the everyday running of the home.

“What has happened here is that the trust and the department have succeeded in neutering any shred of rights to this information that we had.”