Care Crisis

Argus title : If we can afford to go to war, we should pay for care of the disabled

The Palmeira Project for young people with severe learning disabilities and challenging behaviour was set up in the mid 1990s. It functioned successfully for many years, but earlier this year, it was axed.

Councillors who made the decision were informed that the needs of the young people who formed the Project’s client base had changed and were no longer so severe as to warrant the level of care provided there. The enlarged project at Drove Road would, they were told, provide better for the young people’s needs.

They seem not to have to have taken into consideration an increasing body of research which indicates that rates of autism are increasing exponentially, and therefore that the need for specialised residential accommodation is also likely to grow.

Michael Rutter, a Professor of Child Psychology at London University and an expert on autism wrote: “The true incidence of autism spectrum disorders is likely to be within the range of 30–60 cases per 10 000, a huge increase over the original estimate 40 years ago of 4 per 10 000.” The sixth edition of Menkes & Sarnat’s textbook “Child Neurology-2000” refers to a “spectacular” increase.

Councillors who closed the Palmeira Project also seem not to have realised that their Council had for some years been sending large numbers of adults with special needs out of the city because their residential needs couldn’t be met within it.

Brighton & Hove Council’s adult social care committee recently agreed a new Learning Disabilities Housing Strategy. During the course of its discussions it emerged that the number of adults with learning difficulties who are found a home outside of the city is twice the national average, costing the city £4 million extra compared to other areas. In total, £8.2 million is spent each year on placing people away from their homes and families, the average cost being £1,303.25 per week per person.
Council officers have said that a full review of people placed outside the city has been carried out in the last six months and anyone wanting to return has been helped. They accept that some adults have had to be placed outside of the city, but say that most are in neighbouring authorities. They say that only 4 children (half the number in agency placements) have been placed away from the city in what they say are “very specialist services within the South East”.
However, some councillors are not satisfied and have called for city-based care for all people with learning disabilities. Councillor Keith Taylor, Green Convenor and spokesman on adult social care, said: “While 67 per cent of people with learning difficulties are in neighbouring authorities, 33 per cent are as far away as Devon or Wales, which makes it very difficult and expensive for families and friends to maintain contact with their loved ones or to be sure in their own minds that suitable care is provided.”
He added “When we see acknowledged centres of excellence closing in Brighton and Hove, such as the Palmiera Project autistic care facility, and then learn that the council is paying over the odds for long-distance care, it’s clear that something is very wrong with policies which have led to our community’s most vulnerable being sent away to be cared for.”
A Council spokesperson rejected this criticism, saying : “We bought the services for the children who were at the Palmeira Project in-house, and are providing the same high quality of care and better access to extra services at a specially created facility at Drove Road. This is not a closure, it is a move to a different location that has resulted in a substantial saving to local taxpayers.” However, some argue that the Palmeira building could have been used for children from other parts of Sussex or converted for use by local adults with specialised needs.

I spoke to one family who believe that the local authority should provide specialised local care for use by people with learning disabilities – however complex their needs and challenging their behaviour. They are deeply concerned about the prospects for their autistic son, Luke.

Luke’s father Peter, who shares responsibility for looking after him with his former wife Gill, said: “This country is facing a care crisis, not only because of the number of elderly people who are living longer but the explosion in the numbers of autistic children. … I question how society is dealing with this… We love Luke. There is no way we would want him to be sent away. He needs local help and support.”

Luke is 18 and a student. He has the body of an adult, but has the intellectual and emotional maturity of a small child. His behaviour is challenging and he has at times been violent. His father said “After it happens, Luke just cries and cries. He feels so sorry when he loses control, but he can’t help it.”

As a result of Luke’s loss of control, his day to day care had to be transferred from his mother to his father. Peter freely admits the period after he took over looking after Luke was very difficult, saying it was “an absolute nightmare until the Council agreed to organise an outreach service”. Things became easier after 2 council-employed carers were allocated to take Luke out twice a week.

Two workers are needed because Luke’s behaviour is so challenging. This doubling up of care is essential, but means that the money provided for care, actually buys very little respite.

Peter said ‘We were on a system called Direct Payments. In theory we were allocated a number of hours and a sum of money was paid into a special account. But of course there were on-costs, such as expenses when he was being taken out, transport etc. which we had to pay for. But it was a nightmare even finding carers because the nominal pay was so low. In practice I increased it to attract people but that meant the 15 hours we were given a week meant 10 at most and often less. I also had to handle all the PAYE, CRB checks etc. And this was on top of caring for a youngster whose behaviour was challenging to say the least.”

Luke’s 18th birthday should have been a celebration. However, for this family – as for so many with learning disabled children – it was an occasion of increased anxiety. Peter said “What turning 18 means is that he passes from the Children’s Disability Service to the Adult Service as far as the Council is concerned. Unfortunately it is not just a bureaucratic switch as the limited outreach services provided up to now, will have to be provided by someone else.”

Direct Payments were part of New Labour’s Choice Agenda, but it rarely provides real options. Peter calls it “a Hobson’s choice” saying “when you are desperate for respite care you have to take what is offered.”

Now Luke is 18 his parents have been encouraged to apply for a new pilot scheme. Peter says: “The idea behind it is….in theory attractive. Parents are allocated a pot of money according to need and it is up to them to spend it. ‘Brokers’ do the leg work of finding carers, sorting out PAYE etc.”

Luke’s mother Gill said: “This is nice in theory, but I asked the social worker “What do I spend it on? Where are the services for adults?” She just looked embarrassed.”

Peter said: “When we were receiving Direct Payments we were forced to hire an agency worker on more than one occasion. This was at 3 times the regular rate and often they were unable to cope.”

He added: “As part of Luke’s transfer to Adult Service, workers from a nationally known charity are supposed to shadow his Outreach sessions. The problem is that they have very few workers and often don’t turn up. While ‘Choice’ looks good on paper in practice it can end up with no choice whatsoever.”

Autism is increasing as is the incidence of Alzheimer’s Disease and other dementias. People are living longer, often with disabilities. Yet we build our strategies for the care of people with complex needs upon the goodwill and devotion of exhausted family members. It bears hard upon them.

We need our councils to provide properly resourced residential and outreach services employing suitably trained and equipped carers if children and adults with special needs are to live safe and fulfilled lives.

If we can afford to prosecute two wars and renew the Trident nuclear “deterrent”, we can surely afford to pay for it.

Note that the names of all private individuals have been changed.

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