Respite Care for Children and Young Adults Review

The recent Scrutiny panel has had the following remit:

To assess what respite services are available to support families who have children and young adults with special needs such as complex health needs, "challenging" behaviour and autistic spectrum disorders.

To assess whether the respite services available are fit for purpose and whether they can meet future needs.

To determine what agencies are involved and what resources are available with particular reference to:
Financial resources including government funding

To assess what involvement third sector organisations have in the delivery of respite services and how these are funded.

To examine what criteria is used to determine access to respite services and the level of care provided.

To assess how the short and long term needs of the users are determined, and how these needs are provided for.
To examine the transitional period from children's service to adult service, with particular reference to:
- Resources available
- How the transitional period is managed
- Any variation to the level of respite care provided

To determine whether the States has responded to recommendations of previous reviews and enquiries into respite care for children and young adults.

To examine any further issues relating to the topic that may arise in the course of the Scrutiny review that the Panel considers relevant.

http://www.scrutiny.gov.je/Pages/Review.aspx?ReviewId=153

This is the remit of the Scrutiny Panel, and submissions are on one side of the site, alongside transcripts of interviews from professionals.

But you will look in vain to see any sign of parental submissions.

The reason for this is that following advice from the Data Protection Commissioner, it was been agreed that no submissions from parents should be put into the public domain. This is regardless of whether or not:

- parents agree to waive confidentiality in order to place their record in the public domain - after all, interviews in the JEP about the plight of different groups in society do this all the time;
- parents are given a choice whether to make their submission public or not.
- an option for the submission to be made public in redacted form

What is even more startling is that I only found this out by accident, when I was wondering why my own submission had not appeared. There is no indication on the request for submissions noting that this be the case, and the Data Protection Commissioner does not seem to have requested that to be made transparent on the Scrutiny website.

I don't regard that as conspiracy; unlike some bloggers, I don't see a conspiracy around every corner. However, I do regard it as a serious oversight, and I do think it shows a certain lack of courtesy to people making submissions, who may wonder where their submissions have gone to. At present, it looks simply as if they vanish into the void.

No doubt parts of those submissions will appear in the report. But unlike the professionals submissions, they will appear in edited forms, as anonymous "snippets", and the editing will not take place (as far as I am aware) with consultation with the parents, so that matters that they consider important might be left out.

There may be a reason for this: it may be, for instance, felt that it duplicates submissions by others. But unless we know the submission, we may not know how many parents making submissions make the same points (which surely is important in itself), and whether the submissions are in fact identical, or subtle differences exist which might in fact be important.

The important factor is that the primary source documents - letters, emails, transcripts of interviews - are hidden from public gaze. There may be stories there of quiet desperation that need to be told, that, in other circumstances, the JEP might well tell, as indeed they have on occasion, without any problems over Data Protection.

It seems preposterous to me that the Wiltshire report, a document over 500 pages long, can be released in a redacted form, with names removed, and yet it is impossible for this to be an option for submissions to this panel.

It may be remarked that in a small Island like Jersey, people who know the families concerned will be able to identify the submissions. Yet people who know the families will no doubt already be aware of their situation; the submissions will only be telling them what they already knew. As for the others, they will be none the wiser.

The same will have been true for the Wiltshire report. Those within the police, or close to the people involved, would have been able to identify the names, because they already knew most of the background. Outsiders will be none the wiser, which is why Ian Le Marquand was able to release the report to the public domain without, it appears, any problems over Data Protection issues that could not be resolved.

There seems to be a default reaction of secrecy, that the basic instinct of politicians and public sector professions is to keep things off the public domain - Bill Ogley's pay off, or the recent hospital report (still unavailable, and only discovered by chance).

It should be remembered this is nothing new - the Kathy Bull report, for example, was kept under wraps until Stuart Syvret, much to the disgust of his colleagues, leaked it to the JEP because he thought it was in the public interest that they should know the full report, rather than selected and judiciously edited highlights. The JEP obviously didn't mention names of people involved, but the substance of the report could be presented in whole, rather than in part, and not spun by politicians.

I don't think that here there is an intention to spin matters, but I do think that decisions have been taken which have not been as transparent as they should have been, and which may lead to less information about respite reaching the public domain about how parents themselves feel about the matter, despite the best wishes of the panel involved. There are Data Protection issues, but I do think that Wiltshire shows they are not insurmountable. There should be consistency in these matters.

So that it is in the public record, here is my submission, suitable redacted to prevent names of people being identified:

Respite

1) Consistency - when X received respite care, there was a considerable amount of frustration at the way in which it would be cancelled. Cancellations due to insufficient manpower are of course a fact of life, but they invariably happened at the last minute, and with a degree of frequency which suggested that either the manpower resources were insufficient or that the organisation of the manpower was poor.

Part of the rationale of respite is to provide carers with a breathing space, but not knowing whether it would be cancelled or not until the last minute meant that the opposite was the case, and it could add to stress.

2) Another failure of consistency was the relatively high turnover of staff. Special needs social workers and management at Y changed frequently, and there seemed to be no key contact providing a first port of call when changes took place.

The upper levels of lead workers did not seem to have or have had any "hands on" experience in being at a respite centre. The contrast at Y, when the management changed from Z, who had very much a "buck stops with me" style of management, and the subsequent management which was clearly "arms length" was very notable. In a business environment, a successful manager is one who takes time to see how things work on the shop floor.

3) The stresses of bringing up an autistic child - especially in their late teens - when they exhibit challenging behaviour such as self-harm or harm to others - is considerable. Various attempts were made to address this issue, which included staff from respite who worked with X, but there was no consistent strategy to deal with incidents escalating in the home.

Any assessment of respite needs should also involve looking at the home situation, rather than treating respite in isolation. That may also involve seeing whether the situation in the home is so stressful that marriage breakdown may occur if respite is not adequate or consistent (see item 1 above). The statistics on marriage breakdown show that if the child has a severe handicap, the likelihood of marriage breakdown is high.

4) The transitional period from child to adult care was managed primarily by the school, and the plans in place, such as supported work at Acorn, failed to materialise after X had left school. There seemed to be a very ad hoc procedure for developing transitional plans, and some would be brought out (in interminable meetings), only to vanish into the ether a year down the line.

While transitional arrangements would vary from child to child, it seemed that there was a lack of strategic overview [in this case] by a responsible project leader with the authority and team to take the transition through. With children / adults who will always need care, who (for example) are not capable of crossing a road safely without adult supervision, the importance of this kind of overview and planning would be helpful.

5) While not in the immediate remit of the panel, another transition that does not seem to be addressed at all, at least not in any documents that I have come across, is the transition from a carer to the State. As carers get elderly, they may no longer be able to care for a severely handicapped autistic child, and obviously there will be a time when they will no longer be there to do so.

Where you can find documents about bereavement, probate, retirement etc which are publically available and provide a valuable overview of arrangements in these transitions, there is nothing available for the parents, who naturally are concerned for the long term care of their children after their deaths or if they are incapacitated by poor health.