Feature: Struggling against the odds ...
Cambridgeshire County Council has given The Hunts Post unprecedented access to its day centres for adults with learning disabilities. Major changes to these services are imminent. A new Government policy together with financial pressures – CCC spen
Cambridgeshire County Council has given The Hunts Post unprecedented access to its day centres for adults with learning disabilities. Major changes to these services are imminent. A new Government policy together with financial pressures – CCC spends £3million a year on day centres, a third of it on transport – have created an urgent need to examine the way the services are delivered.
On its own admission the council botched early consultations with staff and users on the changes it is considering making, but come this October councillors will begin to decide what the future holds.
In a journey that took him from Huntingdon to St Neots, St Ives, March, Wisbech and Sawston, JOHN ELWORTHY discovers the realities of caring for some of society’s least-advantaged adults, and the extraordinary care and dedication of staff struggling to meet the demands of providing a service gripped by the uncertainty of change.
SOCIETY has come a long way, says Penny Butler, since those with learning disabilities - previously termed mental handicap - looked to an institutional solution for their needs.
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Ms Butler, interim head of disability services for the county, recalls post-war long-stay hospitals, some functioning like mini-villages, recruiting heavily from those with a military background.
"The culture was very much command and control," she says. "In these institutions there was very little privacy, or dignity for the people who were living on wards and sharing clothes from a communal wardrobe."
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Changes in the more enlightened 1970s saw a move away from segregation to integration, creating an approach geared towards supporting people to remain in their own communities.
Now the service is about to change gear once more, and top of the agenda is what Ms Butler describes as a vision to address the barriers that still exclude many with learning disabilities from mainstream society.
The changes are likely to lead to cost savings, but Ms Butler and her advisers insist this is not the driving force behind their current thinking.
What is certain is that within a couple of years, the provision of day centres and the services they offer will cease to be a county council function, the idea being that the voluntary and private sector will be paid to provide them.
Across Cambridgeshire some centres are better positioned than others to embrace those changes.
There are centres where staff already bring in voluntary groups to extend their scope for clients.
There are many examples, too, of good practice, where staff carry out unpaid overtime to take those with learning disabilities on days out and into the wider community.
But, and St Neots was a case in point, there are some centres demonstrably under utilised with vast areas of publicly funded facilities crying out for better usage. And others, such as St Ives, where a small and thriving drop-in centre has no access for wheelchair users.
But common to all was the passion engendered by staff in meeting what are often complex needs of those whose require high levels of care.
And I heard countless stories about the fears and the uncertainties over future provision should any one of the many day centres currently in use be threatened.
But for some there is optimism about the future. Steve Byrne, of the Huntingdon Community Centre, said: "Change is good. In some ways we've already modernised ourselves with voluntary and community groups already heavily involved in our work."
The bustling, well-run centre with its satellite unit, Stanley House in the town centre, offers diverse opportunities selling books, videos, and encouraging people to move on to employment.
The Spectrum project within the centre, run separately, has taken opportunities to new levels, offering real employment in areas such as woodwork and garden maintenance.
With up to 60 regular users, Mr Byrne recognises that work placements are not suited for everyone, particularly those with complex needs.
That was a point echoed by his colleague, Jane Walls, who insisted the priority for change must be evaluating each individual's needs and working closely with family and carers.
"We have to be very careful and cautious about the changes," she said. "For a start, we must ensure there is a big enough private and voluntary market out there.
"At the moment, some of what we do is trying to reassure parents and carers about what the future may hold. Obviously, there are a lot of anxieties and fears, and we have invited these carers to come and feed into the process and have a voice."
Linda Watkins, of Tennyson Lodge, in March (housed in the former library in Gordon Avenue) shares Jane Walls' concerns.
While she is confident that Tennyson Lodge - only opened three years ago at a cost of £800,000 - has a future, she accepts that day centre provision, which they offer 50 weeks a year, may need to change.
For that, however, she needs more help from local employers who are able to find real work and opportunities for those who can move on and into jobs.
She is enthusiastic about the Focus DIY store which has recruited from the day centre, but "other companies are not there at all".
Her plan is for a conference this autumn of local employers so they can be encouraged to recruit from learning disabilities groups.
She said: "Some firms are responding positively, and Focus is a shining example, but we need more."
While not unduly concerned about the future - the centre already has its own charity, Fenequip, set up by staff to help fund its expanding projects - Jane is anxious that the future is decided sooner rather than later.
"Some parents find it very difficult coping, even when someone comes here five days a week. If they weren't coming five days a week, I think they would be lost," she said.
That was a theme shared by Tony Rowe, at Victoria Lodge, in Wisbech, who has been working locally in the care industry since the 1970s. He is hopeful that a series of forthcoming meetings with parents and carers will allay some of their worst fears about the future.
Tony accepted early consultations were "done wrongly but everything is now back on track".
He is particularly proud of the 10 or so young adults whom the centre has helped to move on to college courses or voluntary work, but recognises centres such as Victoria Lodge must still be there for those with high support needs. Without that support, which the centre provides 51 weeks a year, some parents and carers couldn't cope.
A place to go out into the community is precisely what Pauline Robson provides at CATS, Community Access Today, in St Ives.
It is not without its difficulties (you can't access the building in a wheelchair) and what's on offer is basically a kitchen and a lounge. But what it lacks in amenities is more than compensated for in the buzz and excitement which surrounds the centre.
It was here I found one regular user still living with his father, who is now in his 90s.
"Here they come in, go out, go shopping, come back, go on outings, chill out, meet their friends - you name it, we provide it," said Pauline. Her infectious enthusiasm, born out of 20 years doing similar work, means few take much note that the centre is bursting at the seams.
It has also not stopped users making a video of their work, finding space to paint, draw, sew or simply listen to music.
And neither has it stopped Pauline and co-worker Bernadette Providence packing day trips into their heavy workload.
"I always look on the bright side," said Pauline, who was buoyed by a recent council report which suggested St Ives needed a bigger centre to provide a better service.
And so to St Neots, where the Bargrove Centre is, in the words of the same council report, operating from buildings that are under-used.
Alison Gibbons began work as a lunch-time assistant 17 years ago and now runs the centre as community access manager.
On our whistlestop tour of this former special school-turned-day care centre, she pointed out the huge dining hall - "under-used" - and the many other rooms standing, for the most part, empty.
Although on the edge of a large housing estate, its use has decreased over the years because of its remoteness from the town centre.
As a consequence, it mainly caters for those with high support needs.
Thirty use the centre daily but the building could easily cope with 100.
What to do with the remaining space will form part of the current review.
Alison would like it to become a proper community centre, available to youngsters in St Neots, and she has asked both the fire service and police if they had ideas for increasing its usage.
But she is too well aware that while there is concern about the future, it is the everyday needs of those using the centre that must come first.
"We have one guy who lives at home with his very elderly mother. We can meet his needs every day. It would be very difficult for him, and for his mother, if we weren't here," she said.
Of the future she has one simple wish "and that would be the integration of this centre with mainstream society". A reasonable enough request, perhaps, and one with which no doubt the county council would concur.
But with such a diversity of day centres on offer you have to hope that at some point those charged with making key decisions will be singing from the same hymn sheet.
For at the Compass Day Centre, in Sawston, it was left to Delphin Lee, a senior care worker with seven years experience of working among those with learning disabilities, to express the fears of many about how the consultation process is going.
"We don't know what is happening, so we can't tell anyone when they ask," she said.
She can recite a litany of activity at the centre, she can point to the staff who recently took a group to Hampton Court and got home many hours after their official working day ended, and she can talk enthusiastically about their encouragement of evening activity as well as day time activity to enhance the opportunities for those who attend her centre.
But without proper consultation and explanation of why change is necessary, both she and her team of equally enthusiastic colleagues are left wondering at what the future might hold.
The oldest member of the day centre is 80 and the youngest 20, and Delphin believes Compass offers as much to one as it does to the other.
"We'll have to fight out corner," she insisted, a philosophical stance born out of both need and necessity.
If change is to happen, as it surely will, one can only hope it is driven from within rather than without.
The county has an extraordinarily dedicated and talented group of carers who, if asked, can almost certainly help figure out the best way forward.