Death is never a concept at the forefront of conversation, and it’s for this reason many people wait too long before getting their personal affairs in order. When it comes to being the carer of a disabled person you have to ask yourself a diffcult question: what happens after I’m gone?
Planning for the future is an important part of life. However, many people across the UK don’t have any plans in place if they were to pass away before the person they’re caring for. According to research carried out by national charity Sense, 75% of disabled people and their families have no long-term support plans in place.
It’s uncomfortable to think about but there are only two things certain in life: death and taxes. When it comes to discussing death, it’s a topic that is often brushed under the carpet. Despite the upsetting issue it’s something that families really need to plan for.
There are 1.7 million people who are supported by friends and family across Britain. A large majority of the general public is reliant, in some capacity, on someone else to survive. Have you thought about what would happen if you were to pass away first?
Elaine Roche, partner at JMW Solicitors, has had first-hand experience of guiding family members through the legal process of care. The legal world can be a confusing area to manoeuvre and discussing emotional issues can prevent people from seeking help. But a lawyer is one way of ensuring a loved one is cared for.
“If they are under 18, then there is the guardianship issue; it’s almost easier to deal with because you can appoint a guardian and the law is very clear on that. If a person is over 18 it goes into two different situations: whether or not they’ve got capacity,” explains Elaine. Disability has many layers and so does the legal process of care. For those who can live independently with their disability or condition, then they can make their own decisions on what happens to their care.
However, for someone who does not have the level of capacity to decide – and no long-term support plan has been put in place – the local authority has a duty of care. “Section 9 in the Care Act details that the local authority has to provide a needs assessment. If there are needs, they have a duty to meet those needs and they have to look a er the wellbeing of individuals,” Elaine says. “However, how that’s done completely depends on the facilities available. The local authority will provide things for people, but it’s means tested.”
As with many disability issues, there is a postcode lottery in place. “The local authority does have a duty to provide care but they will provide the cheapest care, which is very rarely what a loved one would want for their family or friend,” adds Elaine. Planning ahead can ensure that a loved one will be cared for in a way that everyone is satisfied with.
However, when it comes to future planning and care, many people may not know where to go. Part of the problem could lie in the fact that one third of local authorities do not know the real extent of family and friends caring for a disabled person.
Elaine encourages families to start the conversation and find the relevant legal support for them. After one or two meetings with a lawyer many people will have a plan in place for a loved one, without any great expense. “Put a will in place, it’s the absolute basic. People will know what you want,” Elaine explains.
Alongside sourcing the relevant care, keeping on top of finances is important. It’s common for carers to receive Carers Allowance but this support will end when the carer dies. For this reason, ensuring benefits and inheritance don’t clash is imperative.
Elaine says: “If you’ve put nothing in place and the person you care for is a member of your family then anything they inherit will get eaten up in care. Then they will have to go onto means tested care.” Putting a trust in place means your loved one will not be forced to pay for their care out of their own pocket from the money you leave them. “If there is a disabled person that you’re caring for, or someone on means tested benefits, put a trust in the will so that their benefits are not affected but they can still have access to money,” adds Elaine. “That is going to make money go a lot further if you’re still getting your benefits and you get the extras as well. The idea of making financial plans for future care the earlier you start the better. It doesn’t need to be a huge amount of money if you start early enough and just squirrel away bits, it’s not hugely expensive.”
Legal matters to finance aside, there is one certainty that people want to know before they pass away. Who will be the person to care for your loved one? Elaine says: “Anyone can get involved. If you’re planning ahead, mum and dad, or whoever, can decide who gets involved. It doesn’t have to be any relative and even if no plan has been put in place and the person dies the local authority will get involved. There are always ways and means – it’s just planning ahead.”
It can loom over you, but no one wants to think about passing away. As Elaine concludes: “When you bite the bullet and do it, it’s not as bad as you think and there are things you can do.”