Connor Sparrowhawk was an 18 year old known as 'Laughing Boy' by his family. He was epileptic and had learning difficulties and autism. In 2013 he drowned in a bath at supported living facility Slade House, Oxford.
Southern Health this week accepted full responsibility for the death.
In a public statement, the trust admitted it had "violated Connor's right to life" under the European Convention of Human Rights.
This comes after several years of the family having to fight for justice for their son, which included suffering personal attacks from employees of Southern Health. Sara Ryan, Connor's mother, even received threatening voicemails from one staff member who called her a "vindictive cow" for pursuing the case.
In September 2013, six weeks after Connor died, the Care Quality Commission visited Slade House, and failed it on all ten counts it inspected: there was no battery in the defibrillator, no oxygen in the oxygen tank, no therapeutic interactions, there were even traces of faeces in the furniture, plus medicines were out of date - the list went on.
Last year, in a shocking report commissioned by NHS England at the request of Connor's family, it was revealed that Southern Health had failed to properly investigate the deaths of more than 700 people with learning disabilities or mental health problems, over a four-year period, from 2011 to 2015.
Perhaps the most shocking finding of all was this: of the deaths in learning disabled services, less than 1% were investigated, compared with 60% of unexpected deaths in adult mental health services.
All of this is horrifying reading to anyone who believes that a compassionate society is one that protects the most vulnerable. But to those of us with children with special needs, stories like Connor's are panic inducing.
My son Walter is four and last year was diagnosed with autism. Like Connor, he is often laughing, and also makes us laugh daily. He is sweet and playful, but can also present challenges with his behaviour. Every day I wonder what his future will bring, and how care facilities might decline even further by the time he's 18.
As has been widely reported, one third of working-age people with disabilities are already living in poverty. Disabled people have been hit nineteen times harder by the effects of so-called 'austerity' cuts, due to reasons such as the axing of the Independent Living Fund, slashing of local authority budgets and cuts to legal aid meaning that appealing inaccurate decisions has become impossible for many people.
I know first hand how hard it is to get any support from my local authority in terms of help with my son. For example, after an assessment with an Occupational Therapist, where it was established he had a range of sensory needs that were being unmet, we were given a sheet of paper and left to try to deal with the problem ourselves. "I've never known a child in Haringey to receive Occupational Therapy, ever,"the Special Educational Needs Coordinator (SENCo) at my son's nursery told me.
As he grows older, his needs will become more complex.
It is hard to know where to start in terms of what needs to change, and the direction of travel at the moment seems entirely wrong. But until we value the lives of those with disabilities as much as we do those without, I fear we will not see meaningful change.
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