Respite Care for Children and Young Adults Review

"You do not suddenly stop being autistic because you achieve your 18th birthday. It is a life-long disability."

The excellent review on Respite Care for Children and Young Adults has just been published. It's available online, but I'm putting up a few extracts from it which give an idea of how critical it is of the current practice. The current situation for both children and adults whose carers need some kind of respite has no formal structure, and no legislative framework.

Clearly, matters have been allowed to drift, and families have suffered from breakdowns and divorces as a result of this kind of situation. And it has been going on for a long time, at least as far back as Stuart Syvret's time at social services, when I remember one extremely frustrated parent asking Stuart to come and see what it was like to live without respite. Another parent who wrote directly to Stuart had a letter with a "cut and paste signature" on the reply, saying that nothing could be done. But the fault just doesn't lie there - the Ministers who have taken over the Social Services portfolio in the years since have been just as bad in letting matters drift along, and ignoring parental pleas; all too often, I suspect, these get filtered through officials and never get to the Minister at all.

In our time, we had endless meetings, some of which were with Phil Dennett who was in charge of Children's Services, and nothing ever came of them apart from various options which would appear, and then disappear, like a mirage held out to tempt a thirsty man in a desert. Social workers came and went like spinning wheels, probably frustrated by the inability to help, and blocked by line managers, and on one occasion a chap called Le Sueur from the properties area popped out of the woodwork to mention possibilities, only to burrow down out of sight, never to be seen by us again. Another individual, like a conjurer performing a trick, produced plans for a sheltered unit at St Clement to show us; these were described as "exciting". Nothing came of that either, and the conjurer, along with his plans, vanished out of sight.

Children - especially in their teen years - can be "challenging" - and that may be violent to the point of inflicting considerable injuries on themselves or others - and this leads to considerable stress - the home environment is not one for relaxation, but one where calms are punctuated by storms. Respite becomes a necessity, an opportunity for a real break, and this - as the report shows - is poorly managed. Last minute cancellations can be extremely upsetting when one is expecting relief from a stressed environment, and usually the person in charge - the line manager - on their 9 to 5 hours - would be off home, leaving staff to pick up the pieces.

Transition planning for adulthood, despite the best efforts of teachers such as John Grady, former head of Mont A L'Abbe, were let down by a failure to follow through. Education work as hard as they can, and it's not their fault that transition collapses once the child leaves school. The report shows that transitions are badly handled by Social Services, with lack of continuity, and an ad hoc approach to planning which, quite frankly, from experience seems more like presenting something fairly good on paper beforehand, and tear it up as unworkable shortly afterwards.

One sentence sticks out, and should sound alarm bells for any politician with a social conscience:

Too many families have experienced extreme stress from a lack of respite care, and far too many families have been pushed into breakdown, divorce and ill health as a result.

EXTRACTS FOLLOW:

4.16 Problems with the Supply of Respite Care

During the course of the review, the Panel learned that under certain circumstances, the supply of respite is inadequate to meet the needs of the community. In particular, the Panel identified three relatively predictable 'flash points' at which the current system of respite care experiences significant strain and/or reduces in supply, which are outlined in this chapter.

These circumstances are exacerbated by the relative shortage of resources and staff available to deal with an increased demand for respite services. Specifically, staff working across the respite service are pooled to help deal with a client experiencing a high level of demand, which reduces their ability to support other families. The Panel feels that the Department should as a priority improve their staffing numbers to ensure that even under periods of strain the supply of respite care remains stable. This is critical to ensure that other families do not have their support suddenly withdrawn during a 'flash point' for the respite service, as they may suffer a breakdown as a result.

During Emergency and Crisis Situations

The Panel learned that the supply of residential respite care had experienced significant disruption as a result of homes being used for emergency care placements. Witnesses described the impact that this had caused to their lives:

"Due to a family going into crisis Eden House has effectively been closed for respite. In the meantime, parents of children with acute behavioural problems have received no respite, but a little outreach in some cases".

"The current situation where a child with severe ASC has had to be placed with Social Services as a Looked After Child... has resulted in all respite for children on the Autism Spectrum being stopped as the only place for the child to be accommodated was Eden House. The knock on effect this has caused is that many families who may get a short break have had nothing for over 2 months".

In his appearance as an independent witness, Deputy Green also confirmed that he had been contacted by numerous constituents who had been allocated a regular respite slot only to lose it when somebody needed intensive or long-term care, and that this was "the problem" in terms of his understanding of the current supply of respite care.

The lack of adequate provision, in terms of manpower and facilities, to cope with families going into crisis meant that respite care homes are under almost constant threat of being used as substitute emergency care or long-term care facilities in times of crisis.

According to one service user, "Both (respite) homes will continue to walk a tight rope, as there is still nowhere available for emergency care." The disruption to the regular operation of respite care homes had enormous and significant implications for other families who relied upon regular respite to cope day-to-day, as well as upon the staff and Managers of the respite homes.

A representative from Jersey Mencap identified that any plan for developing an emergency care service should take into account the "soft outcomes" of emergency respite in terms of costs saved by securing respite for regular users and therefore preventing other families going into meltdown and requiring costly off-Island placement.

Rather than starting by identifying the current and future needs of the community and basing a supply model around this quantifiable data, need is responded to as and when it arises and/or is brought to the attention of Social Services. Continuing to operate a model along these lines, rather than building for the future inevitably means that the supply of respite care will always be under strain.

4.20 Witness's Experiences of Transition

The Panel heard that the current system to plan for and provide for this important step was felt to be poorly managed, inefficient and inadequate to meet the needs of the user. The Vice Chairman of Autism Jersey felt that there was no strategy in place for the provision of respite care for children who turn eighteen, and was frustrated by Social Service's lack of proactivity in identifying and working with older children approaching adulthood:

"They should not be a surprise. You cannot suddenly say: "Eighteen, whoops, where did he come from?" They have been in the system since they were toddlers and it should not be a surprise and we should not be having this fight for service. It should be a properly managed  transition programme."

Another witness who had formerly lead a school for autism in the UK expressed concern about the fact that support offered during the transition period does not appear to be planned and are not in place early enough.

In particular, the Panel was surprised to hear that even if a family has a social worker they have to be reassigned a new one when the child turns 18 - they effectively become a "closed case", and a valuable working relationship is lost.

The Business Manager of Jersey Mencap highlighted that there is currently no handover between the child social worker and adult social workers, and no named social worker for the family to work with. The family must start again by contacting Social Services and getting a named social worker to refer them for the adult respite services. In her opinion, the current transition planning is not coping with demand: "It seems as if a fortnight before people [turn] 18, alarm bells are ringing off all over the place."

The Panel, parents and stakeholders were dismayed at the precariousness surrounding continuity of respite care for young adults with life-long disabilities. There appears to be an attitude amongst providers that when a child turns 18, they should no longer need respite, despite having the same disability and family situation as before. Representatives from Autism Jersey were clear in their recommendation that all services for people with autism should be life-long, not just respite.

Deputy Green told the Panel that the haste with which disabled children are passed into Adult Services is "almost indecent" and he felt sure that this was down to "budgetary" issues.

The reality, however, does not meet this expectation. The main issue following the end of education was the struggle for young adults with special needs to find any kind of meaningful employment. Some parents questioned the value of an education system that raised expectations of a fulfilling adult life in this way:

"...You have to ask yourself... why we bother to take them through the education system, build up their expectations and then say: "But we do not have anything for you." You have to ask yourself that. I think it is soul destroying frankly. We told them that they are going to be able to do this and they are going to be able to do that and when they leave, they sit at home because there is nothing there for them."

Key Finding: The Department's perceptions of the transition service are unrealistic. The current transition system does not work properly, reflecting problems with the delivery of transition support by two separate services.

Too many families have experienced extreme stress from a lack of respite care, and far too many families have been pushed into breakdown, divorce and ill health as a result.

Links:
http://www.statesassembly.gov.je/ScrutinyReports/2012/Report%20-%20Respite%20Care%20for%20Children%20and%20Young%20Adults%20-%2026%20April%202012.pdf