What will happen to my disabled son when I die

This BBC Ouch podcast of Mark Neary talks about his concern about how he can maintain a secure routine for his son after his death, as he fears he will be placed in a secure assessment and treatment unit again.

We all need to make good plans for the future.The Thera Trust book Safe and Secure is free apart from £3-00 post and packaging and can be obtained from the Thera Trust


It is full of positive and sensitive suggestions of how you can plan for the long-term care of your relative.


Thank you I feel we share the same dilemma. I strongly feel that if the managers providing the care for our guys were properly trained and the training was delvered via a good support plan (like the one you are woking with for Steven in his own home) there should be no problem.
It’s about humanity and understanding what works for hat person.
Challenging behaviour is distress as the persons needs are often not adequately met or understood.
Ofter support workers have very little person centred training. I have seen first hand what happens when a person comes into Supported living with a one to one care package!!!£££££ this would often result in that persons care being shared with others as hey would be short staffed or not going out because there is no driver/transport. Over use of agency staff who barely get to know the person buy just have to sit with them and have no idea how to interact and probably haven’t read the relevant support plan.
The young man my daughter lived with was throwing furniture attacking staff threatening to kill her on a daily and night time basis his abuse and language was appalling and at times terrifying. My daughter would frequently asked to come home in he middle of the night as she was terrified.This went on for six years the support workers were exhausted and tired of the abuse as you can imagine.
The provider directed the support workers to a two hour on/off shift so that they would cope better. Often they would leave him with no support only a baby intercom and talk to him through that. It was shameful his behaviour deteriorated and the company providing his support were paid handsomely for doing very little to improve his quality of life.
I do worry that Care companies will be queuing up to support those lucky enough to come out of Units because they carry a large budget.
I believe those responsible for supporting and caring for our loved ones should be paid a decent wage have proper training not just health and safety etc but a firm understanding of how to work with complex stressed people who are not displaying challenging behaviour but find life challenging.
The National Framework for provision of care needs to be looked at big companies win contracts pay CEOS mega ££££ and managers and team managers. It’s often left to families and friends to police these organisations and when they do they are bullied and blamed I know it happened to me on a regular basis. I was a troublemaker the mother from hell, they wanted a quite life with tv on all day no-one was watching other than the carers SKY news limited outings no motivation bed at 9 pm. Food was awful carers often had no idea I have seen microwaved salad ( a privately educated guy filling in career prospects) tinned salmon left to heat in a frying pan for 2 hours chicken boiled for 40 minutes pasta boiled forever. A lot of these guys have poor diets and will no doubt have health related problems as a result. I believe this is a form of abuse? So what are these companies really providing??
CQC and safeguarding are not always the solution they usually only talk to the providers.


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I think your mail highlights the many concerns that families have about the challenges of getting good care so that people can really have a good life.There are good providers out there but family members also can play a key role in driving up quality to improve support too.In Oxfordshire, there are Quality Checkers now who visit supported living homes and report back finding to the County Council.My Life My Choice and Oxfordshire Family Support Network have a small team of checkers , which comprise of a family carer and a person with a learning disability.They are trained and also provide a report after each check to the council.
The CQC inspect residential care homes but the County Council check on the quality of supported living provision with their own quality assurance team.
I guess it is important that we all feel safeguarding is everyone’s responsibility but it is important that people are listened to when they raise concerns, as you have tried to do, without being labelled as a trouble maker.

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Checkers etc would need to move in for a week and spend REAL time with the people concerned.
A few hours talking to residents does not reveal much. I was supported by a family liaison consultant at one of my meeting who worked fir the organisation I was complaining about.
This meeting was 3 to 1 I did manage to persuade a friend to come along and listen but it was not helpful. I felt the meeting unfair and the family consultant was pro her organisation.
Many many bad things happened I can tell you first hand parents were not well informed.
Tragically a young lady died during an epileptic fit whilst staff were downstairs.
Her Mum was not well supported by this organisation and neither were the residents some of their parents were never informed about this incident.
This is probably rated as one of the better ones by checkers CQC etc.
As a parent carer you need to police the care yourself and notify safeguarding if you have any doubts! I’m not sure about CQC but also important to alert social worker care managers and higher. I don’t think voluntary organisations can do this effectively.
Good care is provided by those on the ground better training should be provided better wages and fewer managers who in my opinion are keen to protect their back.

Thank you. I now have a copy of this