Rohan's right to live at home

Hi, my name is Rekha and I am fundraising to keep our disabled son, Rohan, at home. Rohan is the sweetest and cutest guy I know! He has a smile that lights up a room, a laugh that is totally infectious, and he has a very cheeky sense of humour. Rohan was born with a rare chromosome abnormality (IDIC 15) which gives him very complex health needs, leaving him totally reliant on his carers for all of his needs to be met. He is so loved, supported and adored in his home by his family and carers.

We struggled on for years and thought that when we got to adult services, Rohan would get all he needs to live an independent life in his own home. Sadly, since we entered adult services, every time we've asked for enough support, Rohan's right to live at home has been threatened.

This has now been on-going for almost four years. The local authorities have used unfounded, manufactured safeguarding allegations, parent blame, and ignored our deputyship court orders in making his best interest decisions, time and time again. Last year they took advantage of his care company going into liquidation to try and take him from his home. Rohan wouldn't survive this. Small changes in his care cause huge anxieties for him: he refuses to eat and drink, and then his seizures escalate.

In November last year we ended up dragging our Local Authority (Cambridgeshire county council) and ICB (Integrated Care Board) to the steps of court before they gave our son a package of care at home. This cost us £23k. He also received an additional £11.7k legal aid once we got into the Judicial review process. We think the LA & ICB spent between £60-80k of tax-payers' money from the public purse (we have an FOI request in), trying to bully a vulnerable young man from his loving home. The really strange thing we don't understand is the nursing home they were trying to force him into costs more than his care package at home.

We engaged our MP Stephen Barclay with other parents who were affected by similar actions from our LA. He requested an urgent meeting with the CEO, which was refused. We have already found the complaints process is not fit for purpose. The LGSCO and PHSO didn't challenge any of these behaviours. Social work England have so far rejected our multiple complaints (from several families) as we have not been through their exacting process. Four months after getting what we thought was a great agency and stable package of care for Rohan, we find ourselves faced with legal costs mounting again.

Our LA/ ICB have now cooked up new manufactured allegations about me, none of these allegations have been corroborated by any evidence despite the Office of public guardian (OPG) asking. Everyone involved in the case, including the MP's office, can see a recurring pattern of false allegations and misinformation. We think they are now trying to drag us into court again to try and steal our son from his home. Everyone who knows us, including Rohan's health professionals and carers, describe us as exceptional parents, so we don't understand how the LA/ ICB can make the allegations they do.

We want three things from this campaign:

1) To raise funds for Rohan's legal costs and keep Rohan in his loving home. Support other families with remaining funds, and possibly develop this into a stand alone charity.

2) Through a full external investigation of CCC, raise awareness of how parent blame is used to remove innocent vulnerable people from their home through the LA/ICB's abuse of power and the public purse.

3) To put laws and processes in place that actually hold our unelected local authorities accountable for their actions.

They have flouted the Care act, our deputyship order and defamed our characters to fulfil their pre-decided agenda. The practice of people answering complaints against themselves must stop and a policy of open feedback and response to failings in the organisation must be initiated.

Ultimately, we need to stop misuse of the public purse to bully vulnerable people with expensive lawyers. Sadly, I am aware of many similar cases to ours up and down the country. Whatever money we do not use in Rohan's case we will donate to other parents that are experiencing similar challenges. We want to use this situation to create reform in Cambridgeshire and UK.

Please carry on down and read all our updates. I aim to expose our shocking experience in Cambridgeshire one story at a time!