Our son has Autism and a Learning Disability, he is 30 years old. To cut a long story short, after leaving college he attended a Social Enterprise for 2 years. After an incident he was asked to leave and the Local Authority who had been funding his placement there agreed to fund support for daily activities from home from 9.30am - 3.30pm 6 days per week and two evenings per week for 3hrs.
Unfortunately for our son and us this arrangement also failed, due to the fact the professionals involved would not recognise or acknowledge his Autism. We were becoming increasingly aware that our son was presenting Autism and we were reading/learning more about the condition but were unable to get a diagnosis or any help from our LA as they only have a diagnostic pathway for Aspergers not Autism with a Learning Disability!! Our son began to suffer more and more stress and anxiety as the support worker was having supervision with the LA psychologist and between them they were advocating that our son’s behaviour should be managed by keeping to a strict regime and not allowing him to change his mind once he'd decided on an activity and we were to also adopt this regime! As you can imagine things went from bad to worse as making a choice about anything, even something small and insignificant, had always been particularly difficult for our son. During this time the support worker often had to call on us for help when things got out of hand, but then complained when they didn't like the calming tactics we used (mainly arising from our growing awareness of ASD). I think an 'Incident Report' was raised several times a week!!
As the regime caused our son increasing anxiety and stress, we became more and more concerned that it was due to the controlling programme recommended by the LA psychologist and support worker, however after meeting with the Social Worker and conveying our concerns things got worse as they decided to cut us (the parents) out of discussion and took the psychologist and support workers lead writing to our GP and requesting her to make an appointment for Forensic Assessment! We only discovered this by a chance meeting with our GP in a car park! Luckily for us she had refused to arrange this appointment. We informed the LA that we wished to change our son’s support which they reluctantly agreed to, although after obtaining our son's file under FOI request it appears they were more concerned with the support workers feelings than any damage that our son had suffered! The FOI request also revealed a frenzy of activity around depriving our son of his liberty! From here we embarked on our first complaint to the LA and then to the LGO whilst at the same time we obtained a private diagnosis of Autism for our son which confirmed he was firmly on the spectrum. Our complaint was that the LA had gone behind our backs, trying to cut us (parents) out of any decisions whilst denying our son's Autism. The complaint was upheld by the LGO. From here we had gained knowledge of how the system is set against you! Phew, we were so lucky that our son didn't end up in an ATU, he would have been absolutely terrified to be removed from all he knows and it would have resulted in a downward spiral to medication, brutality and even death as we have come to understand from all the information and heartbreaking stories we have read!
With growing knowledge and understanding of the system and the way our son’s Autism affects him we were able to turn things round by choosing support workers who had a good knowledge of Autism and passed on all we had learned of how our son’s anxiety could be better managed.
During the next two years our son settled and with understanding of his condition he became more relaxed with less times of anxiety and less challenging behaviour and on the occasions when he did suffer an overload of information and had a meltdown, rather than seeing an ‘Incident’ we worked with the support workers to try and understand the trigger.We had/have been mindful of the fact that we needed to plan for our son’s future as myself and my husband are getting older.
The plan for our son's future had been discussed with the LA on many occasions and we had been advised to apply through 'Homelink' for a 2 bedroom house to allow for the 24hr support that our son needs. We registered with Homelink in 2009 with no intention at that time to look as our son wasn't ready. However after two more settled years 2010 - 2012 we decided to move forward with the plan and it was recorded in reviews in January, July and September 2012. The September 2012 Assessment/Review stating that our son would need 24hr support in his own home. In December 2012 we were made aware that a home was about to go on Homelink in our village so when it appeared on the site we put in a bid for our son and after a lot of writing of supporting letters and phone calls, plus the local connection he was allocated the house. We were delighted that we had found a home for our son that was so close to us and brothers and sisters and friends in the village. We immediately told the LA that our son had his own home and advised them that it would take us 2-3 months to decorate and furnish.
However, what followed was three and a half years of denial and avoidance by the LA to fund our son's support, they completely backtracked on everything they'd previously said and tried every trick in the book to deny our son the human right of living in his own home and our human right to a family life as my husband and myself had to lead separate lives whilst one of us had to support our son in his own home for all hours apart from 9.30am - 3.30pm which he had been previously allocated. So once again we had to go through the tortuous LA complaints procedure before going to the LGO for redress, the first upheld complaint dealt with the fact that they refused to discuss further funding so were obliged to have a panel meeting to consider extra funding for our son's 24hr support. However, after going to panel they still denied that our son needed any extra funding and suggested Assistive Technology would be ok for overnight! With all the information they have on file they well knew this would be inappropriate for our son. So we embarked on complaint number 3 through the LGO who eventually found in our favour and recommended an Independent Social Worker and an Independent Occupational Therapist chosen jointly by us and the LA to carry out new Assessments.
The LA tried to intoduce people who had previously worked for them but luckily for us we managed to persuade them to agree to the ones we found that had more experience and understanding of Autism. They were both brilliant and it was lovely to have contact with people who understood the needs of our son and could so easily identify with him and us. Their Assessments supported our view and that of the LA (even though they spent three and half years denying it) that our son needs 24hr support in his own home. After these Assessments the LGO upheld our complaint and the LA were obliged to fund the support required.
Our son now has a budget for his 24hr support in his own home and he has a new (qualified) Social Worker who is a good person rather than a so called 'Care Manager' who was absolutely useless! I guess this is a success story, although we're exhausted by the journey!! We manage our son's support and will continue to do so while we are able and still have to step in when needed either for support or back up if he has high anxiety. But we see that this can and does work for our son with the right support and the right knowledge and understanding. He has his own home, his own garden, his own dog and is at liberty to come and go as he pleases in his community with support :>))
Our first complaint to the LGO was to stop the LA from criminalising and detaining our (at that time undiagnosed) Autistic Son
Our second was to get the LA to consider our request for extra funding to support our son's independence at Panel
Our third complaint was to fund our son's 24hr support need which they denied at Panel
All three complaints were upheld.
I enclose a letter which we sent to our MP about our experience and the systemic avoidance of meeting the needs of people with ASD/LD.
Hope our story gives others a chance to see that Human Rights can be upheld even though the system is set against you!