Inclusión de la Gestión del Riesgo dentro del Plan de Ordenamiento

Although HSC Trusts and voluntary groups can also provide support for activities and interventions at home, the majority of those interviewed offered services outside the family home.

6.2.1 Services outside the family home

Two statutory agencies provided respite or short breaks primarily for children with a learning disability, up to 18 years of age, co-ordinating with specially trained

caregivers, a process that is both lengthy and cost-intensive:

I would work with children with a severe learning disability so the service we would provide would be social work support, which is very much an access to services. My own role would be to co-ordinate the [name] short breaks

scheme, which provides day-care or overnight stays. At present we have about 30 children in my scheme who avail of it and I would also be responsible for the recruitment and assessment of carers. They are equivalent to fostering regulations. In short breaks the maximum number of nights you would get is

90, the carers receive a fee and boarding out allowances.(Stat.2)

Short break services were also provide by a number of the voluntary agencies in a variety of different formats.

Our current service is to provide both the permanent carer with respite care and permanent care up to the age of 18 years, for children with a diagnosis of severe learning difficulties and challenging behaviours, and similarly for respite for children with the same diagnoses again up to the age of 18 years. We have no lower age range, but the lowest age we have worked with was a

child who was 7 or 8 years old.(Vol. 3)

Short breaks were mainly arranged in another caregiver’s home or in residential settings, but also included a number of related projects that were developed reflecting the specific interests of team-members.

We have a range of in-house activities, such as art workshops, social groups, and puberty groups. We had a recent student here [on placement] and he ran a football group. The other big part of the team would be the paediatric end. We would have a lot of young people with autism. We have three or four

social workers who are involved with parents, to meettogether and discuss

access to services.(Stat. 2)

Services within the voluntary sector included leisure, social, and community

activities, support for siblings, parents, and carers, and community development work.

We have our [name] Service which is a short break service for families of children with disabilities for children from 5 up to 19 providing social

activities with a view to breaking down barriers in their local area, looking at disability awareness training and getting the children into some kind of

mainstream provision in their area whether it be a groupor youth club

Where service users’ needs fell outside the criteria of a service provider, statutory service providers referred families to other services, either within their own Trust or to voluntary agencies, although at times there were restrictions on access to services depending on the child’s needs.

I would pick up the phone and ring people, you know, if I felt somebody would benefit from a service- for example the services for children with disabilities in the [name of HSC Trust area] the criteria changed I think about two years ago which made it extremely difficult for people with either mixed syndromes or… like for example they had to attend a special, a nominated special school, so really only people towards the more severe end of learning disabilities would have got in, despite every other problem there may be, and there was no

give on that whatever. (Stat. 1)

Frequency of service delivery ranged from daily, e.g., childminding, adult day-care, and children’s residential services, to once-off consultations and short-term

placements, e.g., mental health and respite/short breaks services. Some providers expressed concerns that the service was limited by capacity.

It depends on need and on carer availability. Children could go potentially once a fortnight for four hours or twice a week for four hours or they could have a single overnight or a full weekend a month. That is probably the variety that we have. The overnight probably fortnightly would be the maximum, or once a month is the average. A child might go for three

daycares and one overnight a month, that’s how it used to be. We tend to see now coming from the resource panel that the service is fortnightly rather than

weekly. Again it’s down to budgets. (Stat. 4)

6.2.2 Children’s and adult services

Within statutory services, there is a very sharp division between children and adult services. Children’s services generally applied until the 18th birthday (21 for some young people with disabilities).

Children who maybe wouldn’t have survived several years ago are surviving, and there’s always been a bottleneck, more children moving into adult services than they have the supply for, but we’re now getting so many, and it used to be that we would provide a cradle to grave service but now we ‘d be writing to families and saying ‘If you no longer require a service, let us know and we’ll be available if you need to re-refer.’ But for some families, we really aren’t seeing them, and looking to see how to meet the needs of those that do require our services, and our children’s needs have become so much greater.

(Stat. 2)

The separation between children and adult services was mirrored in the majority of voluntary groups; four participants offered services for children, and one offered

services for adults. However, one voluntary service offered general advice and had no age-dependant cut-off point. Lack of continuity was a concern for a number of parents and the demand for adult services was a concern for some providers.

We have four permanent residents, three 13-year-old boys and one girl who is turning 18 this month. She is going to a new unit from another housing provider. Again, it’s a purpose built environment, so she will transition up there within the next few months. This frees up a permanent bed, very often for the permanent children it’s delayed discharge from hospital that we haven’t moved into a permanent bed, so it’s children who have been in [name of hospital] for a period of time and there has been nowhere for them to transition to, for a lack of bed space, so the current waiting list would be

delayed discharge from hospital for that permanent bed. (Vol. 3)

The participants who represented short breaks providers both stressed the importance of training for their caregivers and the confidence this inspired in parents. However, regardless of the relationship between the family and the short break caregiver, this terminated once the child reached 18 years, unless the respite caregiver themselves moved to adult services.

Once the placement is made people become very content. Our service could last right through to adulthood. We lose carers when the young person turns 18 because maybe then the carer transfers to adult services, but it is

wonderful for the family.(Stat 4)

Some voluntary groups offered services tailored specifically to different ages, which meant that there was a continuity of involvement for families. Of course, with regard to planning and delivery these kinds of services needed additional resources. This was facilitated at times because funding mechanisms in the voluntary service were more flexible and reactive than funding for statutory providers.

Our Transition Service works with the transition from school, working with

the young person in their final year at school either 5th year or lower/upper 6,

and then supporting them in the move to their next provision, making sure the support is in place and then a follow up/tracking year monitoring their

progress to make sure that things are going well and if there are any problems you are there to step in straight away to support them or identify any

provision, if its not working.(Vol. 6)

Specific programmes were tailored to specific areas in response to a growing need within a relatively short period of time, by targeting funding applications, with the obvious drawback of maintaining the stability of services and retaining skilled staff.