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Listening to the latest instalment of the BBC’s “Ouch: Disability Talk” podcast, it’s difficult not to be moved hearing Mark Neary speak about his fears for the future that his son Steven, who has autism and learning disabilities, might face after his death (you can listen here).
In the podcast, Mark talks candidly about his recurring nightmare that after his death Steven might be forced to move into a residential unit, causing huge disruption to his vital routine and support arrangements. As well as being a compelling story about a caring and committed father, Mark’s fears for his son also raise some interesting questions about planning for death and how we can ensure that loved ones are taken care of.
Mark speaks of an incident in 2010 when Steven moved into respite care for a couple of weeks while Mark got back on his feet after illness. Whilst this was to be a temporary arrangement, it led to the local authority deciding that Steven’s difficulties were too great for him to go back home. Mark argued that his son’s needs meant that Steven was better off at home. After fighting the local authority’s decision for a year, a judge ruled that Steven’s human rights were being breached and that he should be allowed to return home.
Happily, Mark tells how Steven now lives independently while Mark manages his support arrangements.
Routine is of vital importance to people with autism, who often find change and surprise extremely distressing. Given how vital routine is to Steven’s life, Mark naturally worries about what will happen when he is no longer here to manage his support. This has prompted Mark to put together a “death plan”. In making this plan, Mark is leaving instructions for what needs to be done to ensure that Steven’s routine continues with as little disruption as possible, from explaining how his support workers are paid to listing the music that Steven likes to listen to. Although these instructions will not be legally binding, they will no doubt greatly assist those who step in to manage Steven’s support arrangements after Mark’s death.
Whilst Mark says that he worries that making a death plan sounds morbid, in reality it is a smart and sensible step and the act of dedicated father who wants to do everything he can to ensure that his son can continue to lead an independent and enjoyable life.
Listening to Mark’s story made us think about how we often find that people are nervous or even fearful about talking about what will happen when they die, worrying that doing so might jinx them or upset friends and family. However, in many ways making a proper plan for your death is one of the best ways that you can help your loved ones when you’re gone.
We are often involved in cases involving mental health law as well as the problems that can arise after death, and Mark’s story really highlights just how important it can be to make suitable arrangements – whatever your personal circumstances are – to ensure that your loved ones are properly provided for after your death.
Besides those smaller personal touches contained in Mark’s “death plan”, aimed at making the transition as seamless as possible, regard may be given to legal steps such as making a Will to put in place a trust or other suitable mechanism for money to be released to your loved one who is not able to manage their own finances. Or making arrangements to make it easier for a trusted relative, friend or professional to apply to the Court of Protection for Deputyship to take over looking after your loved one’s financial affairs or to make health and welfare decisions when you are gone.