Six top tips for seeking respite care from your local authority

Ruth Bennett-Anderson has worked for Sense in Birmingham for almost 24 years. Over that time, she’s supported countless families and young people who have been through the process of accessing care and support from their local authorities. 

As we launch our Give Carers a Break campaign, Ruth is here to share some of her best advice on how to get respite care, based on her years of supporting others.

The situations described in this post are real, but names and some small details have been changed to protect privacy.

Two men guide another man along a path in a green garden.

Everyone’s entitled to a break sometimes. That includes people with disabilities, and the people who care for them. 

Respite care can be the thing that stops a family from going into crisis. 

Here at Sense, I work closely with families to help them fight for respite care. 

I find that people often don’t know what they’re entitled to, and don’t have the confidence to go after it. That can mean they don’t get awarded what they should. 

Here are my top pieces of advice for anyone navigating the system.

1. Know your rights, and get an assessment

I see a lot of families who are worried about getting a carer’s assessment or a needs assessment

They might not be sure if they qualify as a carer, or they might be worried about the effect it could have on benefits

But it’s important to get an assessment so that you can access the support you deserve. 

“In day-to-day life, we often downplay how difficult things are. In an assessment, it’s important not to do this. Remember, you know your experience best.”

You may be entitled to up to 30 days of respite care per year. But not many people know this. 

You have to have an assessment to find out if you’re eligible for respite. If you don’t get one, you could be missing out on help that would make a massive difference. 

2. Don’t downplay your needs during an assessment

When you go for a carer’s assessment or a needs assessment, it’s important to cover everything. Stick to your guns. 

In day-to-day life, we often downplay how difficult things are. In an assessment, it’s important not to do this. 

Remember, you know your experience best. Don’t be intimidated. Tell the social workers exactly how it is. 

It’s important to do this, to make sure that you get the support you deserve. 

If you feel like you or your family will be in crisis if you don’t get some respite care, it’s important to say that during your assessment. 

3. Ask directly for respite care

During your assessment, and on an ongoing basis, you have to be willing to ask for respite care, and to push things in the direction you want. 

For example, we worked with a young person named Clare who had a backlog of direct payments that had accumulated because they were supposed to pay for care that she didn’t receive during the Covid-19 pandemic. 

Clare hadn’t had a break in a long time. So we supported her to speak to her social worker, and persuaded them that she should use her excess direct payments to pay for respite. 

The social worker agreed, and Clare was able to plan a proper holiday. 

We also work with another young person called Billy, who gets respite care during the school holidays. 

Billy’s mum is his carer, but she also needs to work. We helped her make her case for respite care by arguing that if she didn’t have more support during the school holidays, she would lose her business.

4. Demonstrate how respite care will help the whole family

Respite is important for parents, siblings and the whole family. 

“I see a lot of families who are in crisis, at the end of their rope. You have to make it very clear to the social workers the impact that support would have.”

Don’t be afraid to say to the social worker, “If we don’t get a break, mum’s mental health will be pushed to breaking point”, or “My other child is struggling at school and urgently needs some one-to-one attention”.

It’s about explaining to the decision makers that respite is going to have a wide-ranging, long-term impact. 

I see a lot of families who are in crisis, at the end of their rope. Unfortunately, social workers often don’t get to see the day-to-day reality. So you have to make it very clear to them the impact that support would have. 

5. Fight for respite care that is suitable

We’ve been around a long time, so we know how the system works. But people who aren’t experienced with the system might not realise that sometimes you have to fight for what you need.

Sometimes, you might be offered respite care that just isn’t suitable for the person being cared for. If this happens, you can refuse. 

For example, when we were working with Clare, a young person we support, her local authority offered her a stay in a respite centre. 

The support worker took her to the centre for a visit, and Clare cried all the way home. She just didn’t want to go there. 

It wasn’t the right place for her. She wanted to go out, explore and have fun, with the support of staff. She didn’t want to be stuck in one place. For her, that wouldn’t be a break. 

It wouldn’t have been a real break for her parent carers, either, because they would have been worrying about her being so upset.

With our support, Clare refused this respite care. Instead, she was able to get permission to use her funding to go on a little holiday.

The support disabled people get should be person-centred, which means they should get to choose. I get to choose where I go on my holidays – why shouldn’t everyone?

Two women sitting outside, holding hands

6. Get letters of support from professionals

You can get letters of support to help you with the assessment process from your GP, or from organisations like Sense. 

You can go to any professional who supports the person in need of respite care, and ask them to write you a back-up letter. The letter should explain why the person and their family would benefit from a break.

We do this a lot for families. Sense is a reputable name, so it adds a lot of weight to their case when we advocate for them. 

Accessing respite care is a tough process. You don’t have to do it alone. Don’t be afraid to ask for help. 

For more personalised advice and support, contact Sense’s information and advice service

Everybody deserves a break

Being able to take a break from caring is essential, but many people struggle to access the respite they’re entitled to. 

Will you add your name to help give carers the break they need?