As we discussed in Season 2, Episode 3 of ‘The Skies We’re Under Podcast’, I’m baffled that the chronological transition from age 17 to 18 means my son (who is entirely reliant on others for his safety, well-being, physical health and joy in his life), will no longer have the legal protection of a person who loves him advocating for him and co-ordinating his care – unless I go to court.
This is the default.
It isn’t that I lose that right if there is a question that I don’t have his best interests at heart.
It isn’t that if questions are raised about me dominating or limiting his choices or outcomes.
It isn’t that suddenly services take responsibility for my son’s daily needs when it comes to safety, well-being, physical health or joy in his life – nope, that is still down to us.
No, we simply no longer have the authority needed to fulfil our responsibilities.
One decision away
In our application, this is an edit of our witness statement.
“For the past 17 years we have made multiple daily decisions impacting our son’s welfare. Throughout these seventeen years he has been unable to contribute in any meaningful way. He is totally reliant upon us or those who we deputise, 24-hours a day, for his safety. This lack of capacity will remain unchanged.
Every small detail of his life is assessed, supported and reviewed. He is non-verbal and requires someone who he trusts and who knows him very well to understand his needs. This includes knowing when a facial expression is showing pain, screaming is behaviour or epileptic seizure, or whether he is having enough laxative/fibre in his diet.
The welfare decisions also come in the form of more significant long-term decisions such as DNACPR, surgery options, pursuing treatment or carer support.
As his primary carers we speak to over 80 people in a six-month period about his health and welfare across SEN, social care and health services.
From the engineers who maintain the hoists in his room, the finance department at the LA who pay his Direct Payments, the specialist nurses who support epilepsy or gastric care, the people who we order his pads from, the OT and specialist equipment company who provide his sleep system at night and many more.
Caring for him happens 24-hours a day, seven days a week and every day of the year. It is a role which requires attention to the minute details and the co-ordination of his mid- and long-term needs. It is more than a full-time job, even when he has carers supporting him.
Research shows that people like our son are incredibly vulnerable to abuse (Health and Social Care Act, 2008) and recent incidents exposing abuse have highlighted this (G0v, 2022). In 2013 the Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD, 2013) showed that the risk of harm and premature death is reduced when someone who loves a person is involved in their care/support network.
As parents are we deeply passionate about ensuring our son does not simply stay alive but has a good life (and one day a good death). It is our belief that professionals who clock off and frequently change role cannot adequately maintain his health and welfare. As his parents we are the only people who know the information from all the areas of our son’s life – health, education, social care, his past, family context and future aspirations.
The fact we need to apply for this legal covering is both heart-breaking and unjust. It is fuelled by an institutional bias against parents that has been shown in recent research (Clements et al, 2013). This status quo contributes to the trauma experienced by parent carers.
It is hard to think that simply because a person crosses a chronological threshold of eighteen years, they would no longer have their parents as their primary guardians acting to champion their unique and highly complex needs. Rather, without intervention, this would fall to a faceless institution determined by budgets and targets which are currently struggling to match the rhetoric of legislation with the reality of people’s lives. With time, our son’s needs will only increase. The importance of knowing the finer details of his life, his preferences, past and aspirations for the future will become more important and can only be fully provided by us, his parents.
With or without this deputyship, we will continue to be expected (and love) to provide for all of our son’s needs at home in his adulthood. All we are asking for is that our daily responsibility to be matched by the authority, agency and resources needed to carry it out. Without deputyship, local services with ever changing transient employees would have the authority to decide what is best for our son – without actually understanding or providing for those needs every day”.
For the past seventeen years we have worked alongside many hard-working and dedicated professionals who have supported our son’s health, welfare and development. We have collaborated and communicated, but we have also needed to speak up, advocate, complain and arbitrate for his voice and needs to be the centre of the support he receives. As he lives beyond the years expected of him, we are determined that his safety, support and care is driven, fuelled and underpinned by the love and devotion only family can give.
The law as it stands means Deputyship is simply another Disability Tax which negatively impacts the finances, emotions and freedom of the most vulnerable in our society.
Born at the Right Time will be joining with Renaissance Legal for a webinar about “Decision Making for Vulnerable People” looking at Mental Capacity, Powers of Attorney and Court of Protection on 24th May 10am. Join our newsletter [click here] to be sure to book when tickets become available or keep an eye out on our social media.
To hear Rachel discuss Deputyship and more tune in to The Skies We’re Under Podcast Season 2 Episode 3
Rachel Wright is a qualified nurse and unqualified mum of 3, parenting an eldest son who is obsessed with Pointless, loves swimming, music and has complex disabilities. She’s the author of The Skies I’m Under, host of The Skies We’re Under Podcast, an award-winning blogger and founder of Born at the Right Time.
Passionate about effective communication and collaborative working, she leads Born at the Right Time using her skills and lived experience to, support families, educate practitioners with CPD-certified courses and influence change.
She is rubbish at juggling and frequently drops balls. She is devoted to salt ‘n vinegar crisps and her middle son is writing a book titled, “My mum’s epic fails’.
It is likely to have more than one volume.
1 Safeguarding from abuse and improper treatment https://www.cqc.org.uk/guidance-providers/regulations-enforcement/regulation-13-safeguarding-service-users-abuse-improper
2 Urgent action to protect children with disabilities from abuse https://www.gov.uk/government/news/urgent-action-to-protect-children-with-disabilities-from-abuse
3 Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD) https://www.bristol.ac.uk/media-library/sites/cipold/migrated/documents/fullfinalreport.pdf
4 Institutionalising Parent Carer Blame https://cerebra.org.uk/download/institutionalising-parent-carer-blame/ “
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