Finding a carer for your disabled child

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.

Find out if you're eligible for a personal budget or short break support from your local authority under the local offer.

If your child has complex needs and challenging behaviour, Coram Family and Childcare or your local Family Information Service can give advice.

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.

Using direct payments to employ a personal assistant

Some parents apply for grants or pay themselves, if they can.

The mother of 2 autistic boys aged 10 and 11 says it's important to keep applying for funding:

"It's another thing to be trying to organise on top of a busy caring role. I almost gave up on it."

Where to find a carer for your disabled child

The biggest obstacle to finding help can be thinking that no one else will be able to care for your disabled child. Many parents, whether or not they have a disabled child, will feel the same.

Start with people you know. This could be a family member or friend. Someone who knows you and your child well.

Warning Hiring someone you know

There are rules around employing family members or friends as carers or personal assistants.

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, Wales, Scotland or Northern Ireland.

Your local authority will have a Disabled Children’s Service. Find your local council and 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.

Ask other parents about their experiences, both good and bad. Scope’s online community has a chatroom for parents and carers of disabled children.

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.

Find out how Gig Buddies match the interests of volunteers and adults with learning difficulties.

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 21-year-old daughter 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, or to walk with you and your child to the shops a couple of times a week. Some parents just want 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.

Last reviewed by Scope on: 09/01/2019

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