WHAT IS OUR CASE ABOUT?

Our children, now young adults, have learning disabilities and lack the mental capacity to make important life decisions for themselves.  We love our children and need to continue to take care of them and make decisions about their welfare.  We find it unbelievable that now they have become adults we, as their parents, have lost that right.  This is a hugely important issue and affects parents and vulnerable young people across the UK.

We want to change the law for all parents in our position, who need to continue to safeguard their vulnerable children into adulthood.  The status we must achieve, through the Court of Protection, is legally defined as deputyship, which is currently only granted in "the most difficult cases".

To be the decision-maker about our children's welfare, we must apply to the Court of Protection for deputyship, but this is only awarded in the most difficult cases.

Without deputyship, we know from experience that important decisions about the welfare of our children are often made by other people, without our involvement or consent.  

If parents are unable to achieve deputyship status, their children, who are extremely vulnerable, will continue to find that others who don't know or care for them, end up making decisions for them.

Although our children have reached adulthood, due to their learning disabilities they remain unable to make simple daily decisions for themselves.  Sadly this will, in all likelihood, continue throughout their lives.    

We need to stand up for our disabled children and protect them for as long as we can.  We have important work to do now to help shape their lives in the future and ensure that they are properly cared for after we die.

WHY DO WE NEED THIS MONEY AND WHAT WILL WE USE IT FOR?

We aim to represent families and young people in the same predicament and raise sufficient funds to issue this case in the High Court, as a test case, with the explicit intention of getting a High Court judge to make a public judgement that will change the law in this area.  That judgement could then be relied upon by all families, as a precedent, when they seek to make an application to The Court of Protection to be appointed as a welfare deputy.  

While we understand that there are instances where it may not be in the best interests of a vulnerable adult to have a parent as a deputy, we believe the Court should take a more favourable stance towards those parents or guardians who have a proven track record of acting in the best interests of their child.

WHAT CAN YOU DO TO HELP?

Please help us to raise sufficient funds to challenge and change this law by pledging what you can.

CASE BACKGROUND SUMMARY:

The Mental Capacity Act is not clear about when a deputy will be appointed.  The Code of Practice, which is used to assist in interpreting the Act, states that only in the "most difficult cases" will a deputy be appointed.

We think that this is totally wrong and that judges need to make the law clear and favour the position of families.

We will argue, rather than only appointing a deputy in the "most difficult cases", the Court should adopt a test that flows directly from the Act and generally assume that it is in the dependent person's best interests to appoint a deputy from among his or her close family.  We think the test should be the same for both welfare and financial deputyship decisions.

OUR PERSONAL STORIES:

Caroline's story:

I am a single mother of two sons with autism whom I wholly adore.  I have advocated for my sons all of their lives.  They are an inspiration to me on every level and I admire their bravery and resolve in dealing with the every day challenges they both face.

This story focusses on particular events concerning my younger son who is 18.  He  has a severe learning disability and relies on others for his care and safety.   He is non-verbal which causes him to suffer from heightened anxiety and, in addition, has sensory and eating issues associated with his condition.  Putting his disability to one side, people are drawn to his fun, cheeky and infectious personality.  He is adept with a ball and shows incredible ability when it comes to his personal interests, one of which is teaching himself the names of colours in different languages.

During his early teens, my son's needs became so significant that I was forced to make the hardest decision of my life and place him in residential care.  At the same time, however, I was excited for him and believed that a specialist and structured learning environment would help him gain greater independence and ultimately, happiness and fulfilment.  I knew it was going to be hard having him away from home but I was certainly not prepared for the events that emerged over the next four years.

There were some exceptional care staff at the facility, however, there were many, in my opinion, who lacked the ability and caring nature to assist vulnerable people.  Over an extended period of time I voiced my many concerns but to no avail.  A series of dreadful events ensued including maltreatment of my son, attacks on him and serious unexplained bruising which culminated in a police investigation.  Sadly, due to lack of evidence, the case was closed and nobody was held accountable for my son's injuries.

My only option, at this time, was to carefully source an alternative residence.  Naturally I was concerned for my son but had to believe the new home would be different; it certainly promised great things.  However, shortly after he moved into the new facility, there were events involving the care of my son that shook me to the core.  I am presently unable to give further details as another police investigation is underway.

My son is now living at home and it is imperative that I gain welfare deputyship status in order that I can advocate for him going forward.  The changes to my son's anxiety levels and general demeanour, since he has returned home, speak volumes.  I not only feel that I have my son back in person but also in spirit.

These and other experiences have taught me so much about the system of care in this country and I am severely concerned for the futures of both of my sons and others in the same position. To this end, I have founded a registered charity to assist this growing group of vulnerable young adults.

Please help us to bring about change by supporting our cause on deputyship.  So many will benefit from the review of a law that, simply, does not serve those it is designed to protect.

Rosa's story:

My daughter Domenica, who is 23, has Down's Syndrome.

Chronologically Domenica may be 23 but mentally she still functions very much like a child.  Under the eyes of the law, Domenica and so many young adults like her are assumed to have the mental capacity to make their own decisions, unless they are assessed as lacking the capacity to do so: decisions about how they live, about where they live, about how they spend their days.  In many cases, when assessments of their capacity and best interests for these life-changing decisions are made, parents are unaware, not invited or even asked not to be in the same room.

When my eldest daughter, Savannah, was making decisions about what universities to apply for, what she should study and where she should live, we sat down as a family and to help her make these decisions.  I would like to be able to do this for, and with, Domenica.  I do not understand why it should be necessary for me, a responsible and loving parent, to have to go to court and show that our case is exceptional for the right to do what is best for my child.

I have been an advocate for people with learning disabilities for twenty years and have received hundreds of emails from distraught parents, recounting how terrible decisions have been made for their children and how they, as parents, were impotent, sidelined and ignored.

I am bringing this case to the courts not just for Domenica but for all those parents who don't have a voice, yet who are united in the extraordinary love they have for their children and who know, better than any organisation, what is right for them.

Let compassion and common sense prevail.

Simon's story:

As well as autism, our 22 year old son suffers from severe learning difficulties, epilepsy and anaphylaxis.  He is non-verbal, hyperactive, has no concept of danger and little understanding of the world around him.  Despite these very serious challenges, he continues to be brave, charismatic, endlessly patient and a huge giver of joy.

Like many parents with a profoundly disabled child, we have made it our mission to create around him a world that makes him feel valued, where he can learn and increase his independence and experience some of the pleasures that life has to offer.  We have met many wonderful people along the way, but also had to fight hard, often with public bodies whose apparent lack of care has sometimes led to despair on our side.  It is only through our persistence to fight on and communicate our son's extremely complex needs that his needs are being met today.

But none of this prepared us for the difficulties we have encountered in transitioning our son to adult services whilst simultaneously moving him from his much-loved college to a provision that can meet his needs.  With apparently little regard to their own care plans, and dismissing all offers to help in every possible way, we feel that attempts are being made to reduce his support to the point where he will be at huge risk.  The decision-makers don't know our son at all, in many cases have never met him, and our 22 years of experience and accumulated knowledge seem to count for very little.

It is this, and the knowledge that thousands of other people are in a similar position, that has prompted us to bring this action.  We cannot continue with a system that allows parents, with all their expert knowledge, to be side-lined.  A need to protect the most vulnerable in society is something that most of us feel very strongly about and it is not happening at the moment.