It’s easy to become overwhelmed when caring for a disabled child. Depending on your child’s condition, everyday activities such as washing, eating, visiting the shops, talking to your partner or caring for your other children can bring extra stress. You can get help, but it’s important the person you find meets you and your child’s needs.
Why recruit a carer or personal assistant for your disabled child
There are many reasons to find help with caring for your disabled child. You might feel:
overwhelmed with the extra work involved
stressed because everyday activities present a big challenge
you do not have time for yourself, friends or other family members
worried about how you’ll manage during school holidays or family breaks
you need time to do things you enjoy
It’s important to give yourself a break. If your own health starts to suffer, this can affect the whole family.
For your child it’s a chance to meet other adults. This can help them build social skills and prepare them for independence.
Challenges to hiring a carer
It can take a long time from your referral for a needs assessment to a personal budget and getting a short break.
If you’ve never hired a carer before, you can get advice on employing a carer or personal assistant.
Some local authorities pay for respite care, also called short breaks. They’ll either pay a carer directly out of your personal budget, or you can receive the money as a direct payment and manage it yourself.
If the person you are looking after gets a direct payment to pay for a care worker, they might want to employ someone they already know to provide the care, such as a family member. But there are rules around employing family members, which vary depending on whether the person lives in England or Wales.
Your local authority will have a Disabled Children’s Service. Ask for a list of approved carers or personal assistants. You could also ask to speak to the person who assesses them. But remember, every authority is different and do not all offer the same level of service.
Check noticeboards at your local surgery, church or library, or look in your local free newspaper for coffee mornings or events for disabled people. Try websites for local charities or internet chat rooms. These are good places to meet parents of disabled children and carers.
Matching a carer to you and your child’s needs
You may have been looking for a long time or waited months for your personal budget, but this is no reason to rush your decision. You need to find the right person: someone who will make a difference to you and your child's life.
Any carer should be able to communicate with your child. If your child likes going out and has mobility issues, their carer might need a car. If you need a carer for an hour every other Wednesday afternoon, they should be available.
If your child is a teenager, a much older carer may not like to do the same things as them, like going to the cinema, shopping or gigs.
Once you have found a suitable carer, arrange to meet somewhere you feel comfortable. This could be a cafe, the park or the home of a friend. Not every parent wants the carer in their home. It’s up to you.
The mother to a daughter aged 21 with Down’s syndrome says you have to be comfortable with your PA:
"I have a great PA now, but it's not perfect. I don't really want a PA in the house if I don't know them."
The carer should also meet your child to find out about their likes, dislikes and care needs.
It’s important that you and your child build up trust with their carer. This can take time. It’s up to you to decide what you want out of having a carer.
It could be:
someone to care for your child 24 hours a day, 7 days a week
someone to walk with you and your child to the shops a couple of times a week
a carer who will call in for a cup of tea and a chat
You know your child the best so the person you hire has to meet their needs and those of you and your family.