26 Oct 2005

Speech by Nigel Williams, Northern Ireland Commissioner for Children and Young People, at the launch of the “Care at its best” inspection report launch at the Stormont Hotel on Wednesday 26th October 2005.

I am a blue card holder. Although I may not appear disabled, I am entitled to a blue card which allows me to park in disabled spaces and has other benefits. I have the card because of the cancer I was diagnosed with last year, which among other symptoms makes it difficult for me to walk long distances.

But when I read a report like this, it makes me feel a bit of a fraud. I am capable of so much compared with the children who are the subject of this report. Every child who was part of the sample in the inspection had been in hospital for at least three months in the relevant period. Listen to some of the conditions they suffered from

  • Visual or hearing impairment
  • Physical disability
  • Severe or chronic illness
  • Learning disability
  • Mental illness
  • Epilepsy
  • Cerebral palsy
  • Spinal muscular atrophy
  • Congenital heart disease

And so the list goes on. I feel I have only the slightest insight into the challenges that these children and their families face. I have spent a lot of time since becoming Commissioner two years ago meeting with children and their families who have a disability. Just last Friday I was talking to a group of young people with profound disabilities in the Southern Board Area, and this afternoon I will be visiting a special school in Ballymena. The largest subject of individual complaints to my office is around issues of disability, and special educational needs.

The crucial thing I try and remind myself of when I read a report like this is that it refers to individual children… to another human being like you and me, who did not choose to be disabled, but is having to face up to their condition. What disabled young people tell me is that they are not looking for sympathy, they are simply looking for equal rights and the opportunity for them to play a full part in society.

As Article 23 the United Nations Convention on the Rights of the Child puts it disabled children “should enjoy a full and decent life, in conditions which ensure dignity, promote self-reliance and facilitate the child's active participation in the community”.

Let me just emphasise the key points in this article:

  • A full and decent life
  • In conditions which ensure dignity
  • Promote self reliance
  • And facilitate the child’s active participation in the community.

Now these are not just nice words or woolly sentiments. These words constitute a promise that our government has made to all children with a disability whether physical or learning, in our society.

I want to deal with two implications of that promise in what I say this morning. First, this crucial inspection report about disabled young people in hospital, and then second I want to touch on the issue of how disabled young people move from children’s to adults services. I know that was outside the subject of the inspection, but I feel there are links between the two issues, and my experience with transition leads to me be very concerned about how this report will be implemented.

You will have noticed that the title of my speech differs from the title of the report in one important respect. I have added a question mark. I don’t think this report describes care at its best, but it does point out what we can do to get there.

I feel we owe a huge debt of gratitude to the inspection team – the authors of this report. Why? Because they have told it as it is. In spite of the natural reserve of public servants, the tendency to try and play things down, we cannot escape the message of this report.

Let me give you a few examples:

In relation to children in mental health hospitals para 3.5 “it was disappointing to note… these centres were operating without the full multidisciplinary staffing team necessary”. i.e. not enough professionals to help; and the same paragraph goes on to say that even with planned new mental health units these would not be sufficient to address children’s needs.

In relation to children in hospitals for learning disabilities para 3.7 “these were found to be wholly unacceptable environments for the care of children and young people”

The team criticized the practice of disabled children being treated on adult wards, and in para 3.10 quoted the NHS standard “Children should not be cared for on adult wards”. The inspection team showed how the current arrangements raised significant issues of child protection – children and young people being cared for alongside, and I quote “older patients who displayed sexually inappropriate or – on occasions – violent behaviour”

Commenting on facilities in the community, the team said in para 3.16 that many young people had spent too long in hospital, because, and I quote “of lack of community facilities for them”

The inspection also found (para 3.22), and one can hear the surprise even within the measured tones – “An unanticipated outcome of the inspection however, was the identification of two residential respite care units for disabled children.. that were operating outside the framework of the Children Order and departmental guidance”. Given the illegality of this provision I thought the inspectors were quite restrained when they said “This is an unacceptable situation”

I could go on. But you get the picture. Of course the team has also done an excellent job in highlighting great examples of good practice in dealing with disabled children. And they rightly acknowledge the dedication and skill of those who work to help support and care for such children. I applaud that good practice and the dedicated work of all the individuals who care for disabled children.

But overall, we have to conclude that this is a damning report, and that our current services fall far short of the promises made in the Convention on the Rights of the Child. This is not a full and decent life for disabled children. This is not a description of conditions that ensure dignity or promote self reliance.

Ladies and gentlemen, we can do better, much better for all our disabled children and young people. We have to do better.

The inspection team has laid out a road map of what needs to happen. I am sure that individual institutions have responded to the recommendations in the individual inspection reports that have now been with them for over a year. They need to make changes and urgently. But some of the toughest issues are regional ones that the Department needs to address.

It is clear from this report we don’t have enough of the right kind of provision to meet the needs of today’s disabled young people. We have too many children in adult wards, or in old crowded and depressing institutions, which in some ways are reminiscent of Eastern Europe.

We don’t have enough inpatient provision for the mental health needs of children and young people. Our community provision has a number of gaps and weaknesses.

I hope that this report will lead to significant and lasting change. As Commissioner for Children and Young People, I want Northern Ireland to be known as a place where disabled children and young people are valued and cared for in a way that allows them to take their place alongside all other children and young people as equal citizens. I want their voice to be heard and responded to.

I would encourage the inspectorate to return to this issue and check on progress as soon as possible, as the fieldwork for this report is now two years old. For my part, my office will be watching closely to see what happens on foot of this report and will continue our campaign to ensure disabled children get a fair deal.

But my optimism that things may change on foot of this report is tempered by the reality that in the past promises of action to disabled people have not fulfilled.

I fear that I cannot yet be confident that such change will happen.

Of course, I am very encouraged by yesterday’s announcement of £50m for children’ services over the next two years. I applaud ministers for the tough decisions they have taken in finding these resources. We need to ensure that they are well spent. This report illustrates one of the priorities that needs attention

But my experience over the last two years has left me with some questions about whether Departments really have the commitment and the wherewithal to drive through the changes needed.

Let me give you just one example that is very pertinent to the issues we have discussed today. Shortly after taking office, I was invited to meet with three separate groups of parents who had children with disabilities. Some of the issues in this report came up in the discussion. In addition, a major concern that they raised was that of “what will happen when my child grows up”. Questions like “Who will care for them?” “Will they get a job?” “Will they be able to do some further courses when they leave school?” “Will they have to sit and thread beads in an adult day centre?”

Now in the jargon of officialdom, these issues are known as “Transition”, that is the transition from children’s services to adult services. We all know that is a challenge for most teenagers, but for those with a disability it presents even greater hurdles.

For example, I spoke to a young disabled person last week who was in a wheelchair and she told how a “transition plan” was prepared for her, which sounded great but broke down the moment she left school. She was due to go to a training course, but couldn’t attend because the location involved going up stairs. When she did eventually get on a course twenty miles away, unlike all the other participants she had to find her own placement.

There are many stories of young people who have even worse experiences and end up whiling away their days in adult day centres, if they even get offered a place.

Faced with the overwhelming concerns of parents, and the fact that politicians were telling me that in 2002 before the Assembly was suspended an interdepartmental group had been set up, I approached the Departments concerned to see what was happening. In March 2004 I was told that the interdepartmental group was still sitting and would be reporting soon.

I am not going to bore you with all the details of my contacts with the Departments concerned (DEL, DHSSPS and DE) but let me just say that I have had a number of meetings, and lots of promises about this interdepartmental report but nothing has appeared. So I do not know what the government’s strategy for transition is.

What I do know is that current services are inadequate. When it works well it is marvelous for those young people who get a job – I have listened enthralled to young people with a learning disability describe their joy at working in a restaurant or a DIY store. But for too many young people this is not their experience.

We need to see a process where the young person, and their rights and interests, lie at the centre of all the planning.

We need every young person to have a proper plan for transition that gives them real and appropriate choices which include work and education where that is possible and desired. And unlike my example, the plan has to be realistic and implemented fully.

We need every young person to have appropriate care within adult provision that does not just lump them together with older people for the rest of their lives.

We need to ensure the crucial role of parents is recognized and supported.

We need to provide advocacy for all young people who are disabled as they move towards adulthood.

I do not underestimate the challenges that face government in this area. But disabled children and young people deserve much better. Departments need to get their act together, prepare a transition strategy that meets these requirements, and implement it. The time for excuses and delay is past.

This inspection report has set out what needs to be done for disabled young people in hospital. Now we need to see action in that area as well.

This has not been a comfortable message to deliver, but I believe it is a vital one. Our current efforts for disabled young people regarding transitions and hospital stays are inadequate.

I commend again the inspection team for their work on this report. We need to listen carefully to all that they will now tell us, good and bad, about what they found.

But most of all we need to act! Thank you