Making a will

Planning your will when you have a disabled child

10th June 2019

Hello everyone and welcome to what looks to be like a beautiful sunny June! This month, I’m going to be talking about wills which isn’t as upbeat and joyous as my normal chat but it’s super important for parents to consider.

Perhaps my thoughts turning to wills was triggered by seeing the reaction online to May’s Panorama programme in which dreadful abuse of vulnerable autistic adults in residential care was shown. I’m going to be totally honest with you all, I haven’t watched it. Not out of thoughtlessness and not because I don’t care but because it’s so close to home that I care too much.

I don’t know if I’d be strong enough to wake up the next day full of beans, able to home educate and work after watching every parent’s worst nightmare in high definition and my own personal idea of hell.

Considering the future

There’s an old saying that the wish of parents who have a disabled child is that they live one day longer than their child and although that sounds quite morbid, that fear makes complete sense to me.

For those disabled children fortunate to have parents who fight for them, what happens to our children when we are no longer around? Who then can we trust to look out for them?

I think that fear is perhaps the driving force behind many parent advocates to work so tirelessly and voluntarily for their chosen awareness and equality subjects, creating a socially wide baton for everyone to take hold of.

The priorities of life change and parenting isn’t a race; it becomes a marathon and together we are constantly working towards our internal hope that on the day that marathon does become a relay there is a baton to pass on to somebody who understands how to care for or support our young person when we are not around.

I have sadly lost friends far too young in the last couple of years, one just in the last few weeks, both completely sudden and unexpected and both leaving devastated families behind.

It has forced me to think about my own mortality as a single parent and my own financial responsibilities, so this month I’ve set aside two days and had meetings with a will provider with the task of them updating my will.

I had a will in the past when I was married but I am divorced and have been divorced for 11 years. Personal, family and professional lives have changed dramatically for the girls and I in the time that has passed since and therefore what would happen in the event of my death has dramatically changed also.

Taking practical steps

First things first, making a will shows you how few people you actually truly, legally trust.

I’ve always considered myself to be an overly trusting person and incredibly naive. If you feel the same way about yourself, spend some time making your will and, if you’re lucky, you’ll have 2 or 3 people maximum that you know to the bone you could rely on if you needed to.

The first question I was asked was ‘how much is your house worth? And how much do you owe on it?’

Luckily, due to having been a teen mum, my priorities from the late 1990s onwards were not weekly nights out, girlie holidays and flash cars so I’ve lived in a mortgaged home since I was a teenager. That means now, almost 20 years later, there is a fair amount of equity for my children to inherit in my will.

That equity had been sorted via a solicitor and a court many moons ago but the most important question for me had little to do with money. It had to do with the most important thing in my world. Who would care for my child?

My two older, adult daughters would have far more agency over where and with whom they lived and could, due to their ages, continue to live in the family home without me. But what about my youngest autistic child?

I have a hard and fast rule of not mentioning anything negative or inflammatory about the reasons I chose to become a divorced mum. I am not bound by a legal duty to do so but I’m most certainly bound by my duty as a mother and a non-toxic ex-spouse to protect and respect my children’s feelings both past, present and future. I don’t speak in inflammatory tones at home, let alone publicly.

That being said, for the sake of this article making sense, it’s a bit more difficult for us as unfortunately the idea of my daughter being cared for by her other parent wouldn’t be an appropriate option for many complex and private reasons.

So who DO you pick?

Who would YOU pick to be your child’s legal guardian until 18? To entrust not only with their everyday care but also with the money they inherited to give them structure, routine, stability and safety long term?

Of course, someone who not only you trust but also trust their husband or wife, and hope they do not divorce. If you chose a responsible family member or friend who is currently single you’d have to also trust his or her selection of a safe and trustworthy partner in the future.

If you are lucky enough to still have living parents young enough to be named guardians they also need to update their will to ensure in the event of their death after yours your young person has a guardian. They also need to ensure your child’s inheritance from you to support their additional needs still goes directly to your child and is not just swallowed up and divided amongst the wider family as their own.

It’s a ghastly, eye opening task.

The decisions I came to with the consent and support of my family are ones that I feel would serve my children well for as long as possible. To live with grandparents and when their grandparents pass, to live with their eldest sister.

What this has taught me is that the African proverb ‘it takes a village to raise a child’ is absolutely spot on.

What I hope for other children is that as a village, a city, a country, a kingdom and a commonwealth, we can create more support in our communities to ensure that no young person with or without parents can be safeguarded against such vile, inhumane and monstrous experiences as highlighted by the Panorama programme.

See you next month,

Carly x



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