Ask me today in my thirties and I’d say ‘A long and healthy life so I can be here to look after my disabled son.’ It’s safe to say I was a planner and up to my late twenties, my life pretty much went to plan. Everything fell into place just as I hoped it would. A few disastrous jobs along the way and bit more student debt than I had planned for but by 28 I had a degree, I had travelled, I was married with my own home, a crazy Labrador, a job I loved and I had just given birth to first child, a gorgeous little boy. Life was good. I got busy planning again for baby number 2 time and if truth be told even thinking about baby number 3. A perfect family.
Then life got a little bit complicated.
My beautiful first born son was diagnosed with Global Developmental Delay. In the first few months after this diagnosis I quite easily brushed it to one side because little boys are lazy and they all catch up eventually - Right? Wrong!
Fast forward a few years and those Global Developmental Delays turned in to Profound and Multiple Learning Difficulties. With that my planning went out the window as we learnt to cope with our new life. You know, it wasn’t always bad - we learned to go with the flow, fly by the seat of our pants. But there was always this little itch, you know like the one you can’t reach right between your shoulder blades.
We didn’t have a Will.
This didn’t sit well with me. I wasn’t thinking about the future. I was living day to day. We weren’t prepared for the future - for our disabled son’s future. What would happen to him if something happened to us? The thought was enough to bring on a pain in my chest, a shortness in breath. I couldn’t simply push this to the back of mind because everyday it was my job to encourage people to write their Will, let their loved ones know their wishes and remember the charities that are important to them.
I was a Legacy Fundraiser for a large national charity. Yet here was I, parent to a child with special needs with NO Will. So we set a date - a New Year’s Resolution in fact. In the month of January we would make our Will. We began by attending a Mencap Wills and Trusts Event. A free information event on how to take care of a loved one with a learning disability. A local solicitor is present with experience of making Wills and Trusts for the benefit of people with a learning disability and you have an opportunity to ask questions or listen to the questions that other families ask, which is what we did as we sat quietly in the back row.
We then made an appointment with a Financial Advisor to see what we could realistically afford in terms of Family Insurance and Savings. We then made an initial appointment with a Solicitor, a Solicitor who specialises in Wills and Trusts. The same solicitor who presented at the Mencap Wills and Trusts Event. I think at this point I realised why we had delayed making a Will. Because we have no guardians for our children should something happen to us - no one to fall naturally into this role. No one we felt comfortable to ask to take on this huge role. I don’t think we’re alone in this situation. It’s desperately frightening. But the Solicitor reassured us that it was still important to have a Will in place. She helped us with every aspect. I can’t say it wasn’t emotional, I did cry but our Solicitor’s practical, straight talking manner guided us professionally through the Will making process required when you are a parent of a child with special needs.
We now have our Will in place, a discretionary trust and a Letter of Wishes stating what we would like to happen if my husband and I died.
For now this has covered things like what we would like to happen to our family home, how we would like our children to be cared for and the sort of material things we would like them to have. It’s not perfect, we still have no nominated guardians. But, it’s the best we can do and I can live with that. We will continue to review our Will, make changes as our children grow and our situation changes.
If you live in the United Kindgom and would like to attend a Mencap Wills and Trusts Event - register your interest here: https://www.mencap.org.uk/webform/book-place-planning-future-event
We also received help with a Cerebra Wills and Trusts Voucher, which is a £350 voucher towards the cost of having a solicitor prepare a Will and discretionary trust to make provision for your child’s future.
The scheme is currently closed for 2015 but you can register your interest in January 2016. For more information on the Cerebra Wills and Trusts Voucher visit: http://w3.cerebra.org.uk/help-and-information/will-and-trust-vouchers/
What is a Will? A Will is a legal document that gives instructions about what should happen to your money and possessions after you die. It must be signed, dated and witnessed by two people.
What is a Discretionary Trust? A discretionary trust is a trust where all decisions about payments of income and capital are made by the trustees, to a class of beneficiaries (more than one).
What is a Letter of Wishes? A Letter of Wishes is an informal letter, signed and dated by you and addressed to your Executors that you can write or type yourself. Unlike the Will, the Letter of Wishes does not become a publicly available document on death and therefore should be kept with your Will. It does not require witness signatures. It can be used to assist or guide your Executors on pretty much anything you wish (hence the name). A Letter of Wishes is an opportunity for a parent to leave instructions regarding their children for example religious upbringing, education, residence and so on. These can be recorded and updated in a letter kept with the Will, but reviewed regularly as the children grow up and their needs and circumstances change.
Children with special needs are particularly important, and the Letter of Wishes may lay down guidelines which stretch into the adult life of that person.