Our first child Jean did not experience any problems at birth. She attended a girls’ school then university, progressing to be very experienced in IT and the study of wine (which I appreciate a great deal today).
Our second child Brian was born with a learning disability due to a lack of oxygen during a difficult delivery in 1972. Having no experience of disabilities, several arms of “expertise” were thrust upon me in the form of a psychologist and a social worker when Brian became of school age.
It transpired that what they had planned for my son was a system that would segregate him from the community and place him in a system where he had no peers. This would deny him the opportunity to improve his social skills and his social behaviour, and to learn how to engage with people who did not have a disability.
Moving home for mainstream school
I fought against this system as I wanted to give Brian the opportunity to develop his strong points and to learn from others in the community.
To this end, I decided to move from Surrey where we lived and we went to Cornwall, where Brian did not have to go to a special school but could attend the comprehensive with support (which is what we wanted in Surrey).
Life went well for Brian and he progressed to the Duchy College, a working farm where agriculture was taught.
We have responsibilities to help our sons and daughters have a better experience of life than the establishment has planned for them
Brian showed an interest in things mechanical and was given access to the mechanical workshop where he learned basic car maintenance and how to drive a tractor with support.
As time went by in Cornwall, I taught Brian to drive a quad bike that he used to drive around our large garden. We then went into vintage engines that we bought as basket cases and restored them for display at vintage shows around the country.
All this was achieved without the help of social services who kept offering their assistance.
I could see the progress Brian was making in terms of engaging with other people, building his confidence and achieving more than we all thought he was capable of.
At the end of his schooling, I found there was no suitable further education in Cornwall, so we called the removal van again and moved to Lancashire, where there were better opportunities for him.
Money before people
It was in Lancashire that I got more involved with the system of social services in terms of putting money before people, so I read up on legislation and educated myself on what should be and what was being delivered.
For this we had to go through the process of an assessment that insisted we stuck to the needs not wants. There were some disagreements along the way but, eventually, I got a package of care that was good for Brian.
Having got the package of care, I waved social services goodbye, and Brian went to a college doing basic mechanics and car maintenance.
Then along came direct payments. I looked at how they were intended to work and talked to a woman in the direct payments office in Westminster.
I decided that this would give Brian more choice and control over his care, and that he could use it to his advantage. So I applied – and hit the brick wall of social services as, in the beginning, direct payments were a concession, not an entitlement.
However, this soon changed and I was banging on the door of social services again. This time, they had to give way as it seemed I knew more about the payments that they did.
Having got the direct payments, I again waved the social worker goodbye and we set out to decide what Brian wanted to do with this money, which
he could use to employ personal assistants (PAs).
He opted to further his love of music so he employed two PAs, both of whom played guitar. One of them teaches guitar so Brian was in his element. Brian’s PAs have now formed a band called Brian & The White Lightning to raise money for a local food bank and a football team for disabled people.
In 2002, I formed a charity, West Lancashire Peer Support, to help others manage direct payments, as you become an employer when you get them.
The responsibility of tax, national insurance, contracts of employment, keeping financial records for audit and so on can be too much for family carers.
We now manage around 120 packages of care for direct payments and personal health budgets, and we are also corporate appointees with the Department of Work and Pensions.
I am fortunate to be working with people who are so committed to choice and control. In 2007, we assisted with setting up direct payments in Australia. We toured Australia every year until 2016, speaking to state officials and families on the benefits to both sides of direct payments and peer support.
At 90, I have now had to think of what will happen to Brian when I am no longer here. My daughter lives in Surrey and Brian wants to stay in Lancashire with his mates.
So I looked at supported living and did not like what I saw. It seems that social services place people like Brian in a house with other people and a carer. They then take all their benefits, giving them back £25 a week for pocket money.
Because there is a carer in the house, he would also lose his direct payments and his carers, and it would also deny him his social life that he so enjoys.
After doing some sums, it looks to me as if local authorities make a fortune out of vulnerable people In supported living.
So I have opted to place Brian with a family that I know and trust. His benefits will pay for his keep and still give him the same amount in his pocket money as he had before. This way, they cannot take his direct payments away from him as they are not providing any additional care.
There is a plan B if something happens to the mother of the family where Brian will be. The daughter is a nurse and will have Brian with her family should it be necessary.
Opportunities at the outset
When I look back over the years since 1977, I see that people with disabilities are not given opportunities in the same way the rest of society are; we are all where we are because we had the opportunity to get there. Unfortunately, people with disabilities do not get those opportunities.
It is surprising what can be achieved when people are given such opportunities. We all have a gift but some get the chance to develop their gift while others do not.
Brian has got to where he is mainly without the “help” of social services. I shudder to think where he would have been now if we had not taken the stand we did against the segregation of people with disabilities.
Day centres and special schools are a form of segregation as far as I am concerned. Others will disagree but, when I look at Brian, I am pleased at what he has achieved when given opportunities.
To sum it all up, we do need support for vulnerable people but that support must be flexible and restrictions on what direct payments can be used for must not hinder the opportunities for people to develop their hopes and dreams in the same way the rest of society does.
We have to remember that we also have responsibilities as parents to help our sons and daughters to have a better experience of life than the establishment has planned for them.
Brian is now living with his new family. I visit him twice a week and was there last night to celebrate his 49th birthday.
I am happy that I can rest in peace when the time comes, knowing that Brian is happy and safe with his new family, and all achieved without the help of social services.
Playing the guitar with Brian & The White Lightning; Brian working with Les Scaife, using tools that improved his hand-eye coordination.
An engine restored by Brian at Duchy College, which is based at a working farm.
