Rachael says…it’s a long story!
Our daughter, Alexandra, suffered a brain haemorrhage when she was just 4 days old and grew up with profound and severe learning disabilities. When she started school we were overwhelmed by the support available both for Alexandra and for us. Her school years really were wonderful, she was well looked after and encouraged.
At the age of 19, Alexandra was moved to a Day Time Support Centre run by the Local Authority. Although this was a big transition for all of us, it was a good one. Alexandra attended a Special Care Unit for the more profoundly disabled adults, within the Kidlington Day Centre. A couple of years later, the more profoundly disabled adults were integrated with the other adults using the service. This benefited everyone. Adults with milder disabilities thrived and grew in confidence as they were encouraged to help those less able than themselves.
In 1999 funding cutbacks began. Initially we experienced the loss of full time one to one care. Then the Blenheim Road Day Centre in Kidlington was sold and the adults moved to other venues. Some went to the smaller venue by the Library in Kidlington, and others were sent to rooms within Garth House, in Bicester. Both Day Centres were unsuitable for a variety of reasons; our adults felt a great loss of the familiar large spaced building, their friends, and the staff they had been with for many years.
The small Centre in Kidlington was to serve 32 adults with learning disabilities. It had one room for daily group activities, a sensory room available for use by one person at a time, and a single changing room. There was no garden, no cooking facilities, nor the computer room which had been so valued by the adults before. Group holidays and days out no longer took place.
In 2016 the Oxfordshire County Council consultation on cutbacks began and we worked hard to raise the profile of the situation with an online petition.
The proposal was to close 14 Day Time Support Centres and integrate the care of adults with learning difficulties with the care of elderly people with dementia. Carers of both groups were horrified. The two groups require completely different provision. Elderly dementia patients need quiet, calm surroundings; whilst our adults with profound learning disabilities love loud music and bright lights.
In January 2017 I was invited to address the Cabinet of the Oxfordshire County Council, due to the profile of our petition, and on 14 February 2017 I made representations to the full Council on the matter too. Heartbreakingly, the Council voted the change through.
We feel as though we have been allowed to go through all the hardships of the past years to enable us to tackle this project knowing what is involved.
The years we’ve struggled through have given us the best training for this project!
In November 2017 the closures took place. Alexandra was moved to the Day Centre in Bicester, originally opened for and used by the elderly of Bicester and the surrounding villages. She attended, along with elderly people who have conditions such as Alzheimer’s, dementia, strokes, Parkinson’s and similar medical problems. This was and still is a very unsuitable service for both groups concerned.
We felt that our group had been marginalised and discriminated against because they couldn’t speak up for themselves. We were exhausted from the physical and emotional requirements of 24 hour care, and the worry about our adults.
Most of the primary carers continue to care for their very dependent adults in their 40’s, 50’s and 60’s who are still living at home. We ourselves know firsthand the huge importance of Day Time Support and Respite Care services. They are invaluable.
I know what it is like to be a carer, so I want to look after the other primary carers.
What are we going to do about this?
On February 16th 2017 I had a vision of a single storey building, and I clearly remember thinking,
‘If only I had the money, I’d buy it for our children to use. That’s what I would do!‘
I talked it over with some friends and was challenged to work out how to make our dream a reality.
This is a huge task, a daunting project, but we are making progress.