Jan 172017

Message in a bottle.

Today is apparently Blue Monday. A named coined by Dr’s at Cardiff University to predict the day of the year where things are at their bleakest and most depressing.

Currently that is everyday for me. I’m sure that’s true of millions of disabled people and carers at the moment.

Last year was spent fighting for Emily. If I’m honest every year has been spent fighting for Emily since she was diagnosed at 3 with autism. The sad truth is that the fight for her was much easier when she was a disabled child than when she became a disabled adult. Our empathy, funding, services and protocols surrounding vulnerable children is clear. They may be limited but they are clear.

As a society however the rules change when these vulnerable children become vulnerable adults. The spotlight shone brightly on Winterbourne View. We were told things would change for the better. I believe that the intention is there for this to be true but as we know, intention and application are two very different things.

Responsibility and an interpretation of responsibility, are two very different things as well. It doesn’t matter how many people are reminded of their duty of care under the Care Act, it seems there is always a way to stipulate adherence to it, yet a departmental distance from it.

The threat we have lived under everyday for a year now is that Emily may be admitted to an assessment and treatment unit.  This is a psychiatric hospital. I strongly believe and have had this this verified by professionals, that if Emily is placed there, she will never leave.

There is no clinical need for this to happen, but one based on a possibility that Emily’s current care package may break down, due to her behaviours which challenge. I’m told that if that were to happen, there is no other provider able to pick up Emily’s care.

Yesterday I learnt that the lead psychologist in Emily’s care has gone on long term sick leave. This is not their fault, but the system should be robust enough to continue seamlessly for Emily. I don’t have confidence that this will be the case. This person is co-ordinating everything. Problems are still ongoing but now, with no idea of who will pick this up or what will happen to all the outstanding issues, which I’m battling to resolve already, I now feel hopeless.

I’m at breaking point. The fight which consumes my days and torments my mind at night, is an ongoing one because I feel there remains a collective societal lack of knowledge and true understanding of what it means to be an adult with a learning disability.

Emily is tearful and anxious much of the time.

I’m including a portion of an email that I’ve just sent to everyone working with Emily. It’s a reflection of where I am and where Emily might end up through no fault of her own. I feel broken, hopeless and utterly desperate for my daughter. I don’t intend to make things any worse than they are but I have no idea what else to do. If you can circulate this, if you can help or know someone to send this to then please do.

It’s my message in a bottle that I’m throwing into the sea of the internet, in the hope that we can be rescued.


[suffusion-the-author display='description']
 Posted by at 22:20

  4 Responses to “Message in a bottle #autism #institutionalisation”

  1. alas this is increasingly common across the UK. Adult care is non-existent and in breach of human rights and the EU’s charter of fundamental rights. Get in touch with your amEP and the EU autism alliances as well

  2. I sincerely empathise with your plight which as parents of a child (becoming an adult does not stop them being our “child”) with behaviour which can challenge, we live constantly with fear and dread that they will be institutionalised. All we have to fight back with is to make as much of a “song and dance” about preventing it, as we can muster. I have learned over 50 years that the only way to defend your child’s rights, is to kick off as loudly and publicly as you can. In other words, have your own challenging episode, until they take note.

  3. Last year Councils in England had moved towards institutional care because of the high cost of caring for severly disabled people. It was more cost effective to place severly disabled in institutions to reduce the cost of care. It is denying these disabled people of their human rights and I think that’s where you should start with Emily. It is against her human rights to be placed in an institution where she would have her rights compromised, removed and as the care system is imploding, she won’t get anywhere near the care she would get at home. She really is possibly being forced into a situation that would severly affect her health and well being. Where would this place be? in the next own, city, hundreds of miles away? The situation is that the NHS is at breaking point. qualified Doctors are leaving because of sheer stress as they fight an uphill struggle to ensure proper care for their patients. I feel this is the Tory plan to remove all disabled people from their homes to institutions. The un have already condenmed this evil, vile government for the discrimination towards the disabled. This only adds to their crimes. When I read initial reckomendations by Councils for this type of care. I knew in my heart what road we were going down. Emily’s case has proved this to me. I would contact the equality and human rights commission and get their support to stop this barbarick treatment of Emily. https://www.equalityhumanrights.com

    I have an on going case with them just now and they will help in any way they can. You also have the right of appeal against any decision the council make. If you are not satisfied with their responce then follow the complaints procedure on your local authority web site. There should be 3 stages of the complaint procedure and then it goes to the Local authority Ombudsman. They can make a decision on Emily’s case as to whether the council can legaly place her in an institution. It also may mean that this method can’t be used if it is better to use legal methods to fight the council. I’m not sure about legal aid but the Equality and human rights commission will guide you through the process. Please don’t give up, fight this with every ounce of energy you have. This evil and degrading method of putting the severly disabled into institutions is taking us back to the Victorian age. This is wrong, very wrong. I have nothing but contempt for this government and local authorities who go down this road no matter what political affiliation they are. This is against all disabled persons rights. This is just a start, believe me. It is going to get much worse. The nhs is in crisis and the government know it. ?They created the crisis and should be held to account for the deaths already caused by them. The implications of this situation is grave for disabled people. All disabled people. Placing hundreds of disabled people in institutions is setting a precident, one that has already happened in Germany pre 1939. Add to that the possibility of “The right to die” proposal becoming law. There is a real situation, a very dangerous situation where disabled people’s lives will be at risk. I truly do not want to gown that road or scare anyone by my preminitions. It is a highly possible senario and aone every disabled person, their friends, carers and the able bodied should be fighting against. I can’t emphasise enough how dangerous these policies are. They threaten our very existance, our erosion of rights and destroy any equality the disabled groups like dpac have fought so hard to gain.

  4. I sincerely hope you manage to keep Emily from being institutionalized. I have shared this post on twitter, facebook and via my own blog, aspiblog.wordpress.com.

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