The situations described in this post are real, but names and some small details have been changed to protect privacy.<\/p>\n\n<\/div>\n <\/div>\n\n\n\n\n Everyone\u2019s entitled to a break sometimes. That includes people with disabilities, and the people who care for them. <\/p>\n\n\n\n Respite care<\/a> can be the thing that stops a family from going into crisis.\u00a0<\/p>\n\n\n\n Here at Sense, I work closely with families to help them fight for respite care. <\/p>\n\n\n\n I find that people often don\u2019t know what they\u2019re entitled to, and don\u2019t have the confidence to go after it. That can mean they don\u2019t get awarded what they should. <\/p>\n\n\n\n Here are my top pieces of advice for anyone navigating the system.<\/p>\n\n\n\n I see a lot of families who are worried about getting a carer\u2019s assessment<\/a> or a needs assessment<\/a>.\u00a0<\/p>\n\n\n\n They might not be sure if they qualify as a carer<\/a>, or they might be worried about the effect it could have on benefits<\/a>. <\/p>\n\n\n\n But it\u2019s important to get an assessment so that you can access the support you deserve. <\/p>\n\n\n\n “In day-to-day life, we often downplay how difficult things are. In an assessment, it\u2019s important not to do this. Remember, you know your experience best.”<\/p><\/blockquote><\/figure>\n\n\n\n You may be entitled to up to 30 days of respite care per year. But not many people know this. <\/p>\n\n\n\n You have to have an assessment to find out if you\u2019re eligible for respite. If you don\u2019t get one, you could be missing out on help that would make a massive difference. <\/p>\n\n\n\n When you go for a carer\u2019s assessment<\/a> or a needs assessment<\/a>, it\u2019s important to cover everything. Stick to your guns.\u00a0<\/p>\n\n\n\n In day-to-day life, we often downplay how difficult things are. In an assessment, it\u2019s important not to do this. <\/p>\n\n\n\n Remember, you know your experience best. Don\u2019t be intimidated. Tell the social workers exactly how it is. <\/p>\n\n\n\n It\u2019s important to do this, to make sure that you get the support you deserve. <\/p>\n\n\n\n If you feel like you or your family will be in crisis if you don\u2019t get some respite care, it\u2019s important to say that during your assessment. <\/p>\n\n\n\n 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. <\/p>\n\n\n\n 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\u2019t receive during the Covid-19 pandemic. <\/p>\n\n\n\n Clare hadn\u2019t 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. <\/p>\n\n\n\n The social worker agreed, and Clare was able to plan a proper holiday. <\/p>\n\n\n\n We also work with another young person called Billy, who gets respite care during the school holidays. <\/p>\n\n\n\n Billy\u2019s 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\u2019t have more support during the school holidays, she would lose her business.<\/p>\n\n\n\n Respite is important for parents, siblings and the whole family. <\/p>\n\n\n\n “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.”<\/p><\/blockquote><\/figure>\n\n\n\n Don\u2019t be afraid to say to the social worker, \u201cIf we don\u2019t get a break, mum\u2019s mental health will be pushed to breaking point\u201d, or \u201cMy other child is struggling at school and urgently needs some one-to-one attention\u201d.<\/p>\n\n\n\n It\u2019s about explaining to the decision makers that respite is going to have a wide-ranging, long-term impact. <\/p>\n\n\n\n I see a lot of families who are in crisis, at the end of their rope. Unfortunately, social workers often don\u2019t get to see the day-to-day reality. So you have to make it very clear to them the impact that support would have. <\/p>\n\n\n\n We\u2019ve been around a long time, so we know how the system works. But people who aren\u2019t experienced with the system might not realise that sometimes you have to fight for what you need.<\/p>\n\n\n\n Sometimes, you might be offered respite care that just isn\u2019t suitable for the person being cared for. If this happens, you can refuse. <\/p>\n\n\n\n For example, when we were working with Clare, a young person we support, her local authority offered her a stay in a respite centre. <\/p>\n\n\n\n The support worker took her to the centre for a visit, and Clare cried all the way home. She just didn\u2019t want to go there. <\/p>\n\n\n\n It wasn\u2019t the right place for her. She wanted to go out, explore and have fun, with the support of staff. She didn\u2019t want to be stuck in one place. For her, that wouldn\u2019t be a break. <\/p>\n\n\n\n It wouldn\u2019t have been a real break for her parent carers, either, because they would have been worrying about her being so upset.<\/p>\n\n\n\n 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.<\/p>\n\n\n\n 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 \u2013 why shouldn\u2019t everyone?<\/p>\n\n\n\n You can get letters of support to help you with the assessment process from your GP, or from organisations like Sense. <\/p>\n\n\n\n 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.<\/p>\n\n\n\n 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. <\/p>\n\n\n\n Accessing respite care is a tough process. You don\u2019t have to do it alone. Don\u2019t be afraid to ask for help. <\/p>\n\n\n\n For more personalised advice and support, contact Sense\u2019s information and advice service<\/a>. <\/p>\n\n\n\n Being able to take a break from caring is essential, but many people struggle to access the respite they\u2019re entitled to. <\/p>\n\n\n\n Will you add your name to help give carers the break they need?<\/p>\n\n<\/div>\n <\/div>\n\n ![\"Two](\"https:\/\/www.sense.org.uk\/wp-content\/uploads\/2023\/05\/Image-2-Three-men-on-Sensory-Walk-compressed-1024x683.jpg\")
<\/figure>\n\n\n\n1. Know your rights, and get an assessment<\/strong><\/h2>\n\n\n\n
2. Don\u2019t downplay your needs during an assessment<\/strong><\/h2>\n\n\n\n
3. Ask directly for respite care<\/strong><\/h2>\n\n\n\n
4. Demonstrate how respite care will help the whole family<\/strong><\/h2>\n\n\n\n
5. Fight for respite care that is suitable<\/strong><\/h2>\n\n\n\n
![\"Two](\"https:\/\/www.sense.org.uk\/wp-content\/uploads\/2022\/02\/catherine-sarah-holiday.jpg\")
<\/figure>\n\n\n\n6. Get letters of support from professionals<\/strong><\/h2>\n\n\n\n
Everybody deserves a break<\/strong><\/h2>\n\n\n\n