By Mencap
"Alastair is creative, loving and, like many young people, into skateboarding and surfing. He also has complex needs due to his
learning disability
A learning disability is to do with the way someone's brain works. It makes it harder for someone to learn, understand or do things.
which means he needs help with personal care, eating and communicating as he is non-verbal. This means when it comes to having a support worker, he needs someone who shares his passions, can get to know him and his non-verbal cues and give him tailored support. Until five years ago, I was doing all of Alastair’s care with support from my husband Adam, 38.
Trying to juggle it with my job as a graphic artist and ensure Alastair got everything he needed was a huge amount of pressure and affected my mental health. In 2018, the
local authority
A local authority is also called a
council
A council is also called a local authority. They are a group of people who make decisions about some of the things in the area where you live. These include: schools,
social care
Social care means the services that give care and support to people who need it.
(support for people), parks and dustbin collection.
. They are a group of people who make decisions about some of the things in the area where you live like schools, social care (support for people), parks and dustbin collection.
assessed us and said Alastair needed 2:1 care, Monday to Friday. Initially we tried an agency who employed trained carers but they sent different people each time and often they didn’t know or understand Alastair so he would get frustrated. On one occasion they sent one of their office staff. I was furious that they would be so dismissive of the support someone with such complex needs would need.
Eventually we found Alastair a fantastic support worker called Jon* and they built an incredible bond over five years. Jon could tell from non-verbal cues what Alastair needed such as if he was thirsty or needed personal care. We self-funded Jon to attend a course to learn symbol-based language so the communication between the two of them was great – which meant Alastair was better understood and his needs met."
But when Jon left the sector in November 2023, we struggled again to recruit new carers, and it took
even longer to support and train them to fully understand Alastair’s needs."
We picked up the gaps in Alastair’s care and now manage a team of six, who provide most but not all of Alastair’s assessed care needs. We are only able to pay minimum
wage
A wage is the money you get for doing a paid job.
for this hugely important role due to government funding and have seen people turn to other roles that can pay more. All training is either given or funded by ourselves so the role has no official progression and no chance for career development.
When there are too few staff in social care it’s people like Alastair and our family that suffer. Alastair’s ‘voice’ is often not heard, he has feelings of overwhelm and he misses out on having someone he bonds with who really ‘gets him’ and his needs.
The government
The Government are the people who run the country. The Government decide how much
tax
Tax is the money that pays for things like schools, hospitals and the police. There are different types of taxes like
income tax
Income tax is the money that is taken out of the money you earn every month. It helps to pay for things we all need like hospitals and schools.
,
VAT
VAT is also called Value Added Tax. VAT is the extra money you pay when you buy things. The money goes to the government to pay for things like schools and hospitals.
and
council tax
Council Tax is the money that people pay to the council. It helps to pay for things like social care (support for people), parks and dustbin collection.
.
people should pay and how things like the National Health Service (
NHS
The NHS is the National Health Service. The NHS gives free healthcare to everyone in the UK and includes things like your GP (doctors) surgery and hospitals.
) should work.
needs to recognise the important role carers play, how complex the role can be and fund it properly so people get a fairer wage and stay in the sector longer.
