PA & Respite
In 2019 we sought out help and support as we
were exhausted. That year alone Delilah had 2
surgeries, moved school, had numerous hospital
visits and a trip to a specialist in London under her belt.
It was actually Delilah's physio while visiting one day that said
clearly and simply "you need help, support and a break - I am going
to refer you" and she did just that. I was too tired to say "no, I am ok" as I usually would. I was happy to just carry on, changing bandages and looking after the house and kids along with everything else, but she heard the cry I wasn't saying out loud. I was grateful.
Shortly after that conversation I had a call and a visit from the disability team social worker, I instantly panicked and thought I am not struggling that much, I swear! But they were coming to help, not to take my children away. After a brief conversation about what would work for us as a family we filled in some paperwork and that was it. I heard from her again a little while after to say we were provisionally given 20hrs to start with and we could find ourselves a PA or use Penderels - a company designed to deal with the PA payroll etc. So we set off to find a PA...
It was so difficult! The idea of giving our child to a complete stranger to look after.
We knew we needed help but we didn't have a clue where to start. Thankfully we have a good team of professionals around us who had suggested maybe asking a PA they knew of that was looking to take on more families as she enjoyed the role. Her and Delilah hit it off so well! We love her, she's a fantastic asset to any family and we love her visits. We now consider her family, I am aware that we were very lucky to find her at the right time. Unfortunately due to the pandemic we haven't had as many visits as we would have liked but we are now looking to start those again as Delilah loves her company, we are also looking for a second PA to help also so we can share our current PA with more families.
I know what you're thinking, why would I give her up if she's soooo fantastic?
Simply put... she's fantastic but our needs and circumstances have changed. We now need weekend care and our PA works on evenings. Plus, why wouldn't I want to help another family find a great PA like ours? These relationships only work if you are both honest. Honest about what you and your child needs and what you would like from the time spent. That also, the PA feels comfortable to talk to you and discuss what is or isn't working... and who wouldn't want those things? With these in place you have a good base to stand on.
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, you can get advice from Coram Family and Childcare.
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.
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.
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.
Ask other parents about their experiences, both good and bad.
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 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.
Please come back to the page soon to read a piece from
a PA about supporting you.