Guides for adult siblings of people with a lifelong learning disability and/or autism
We have written the following guides to support you with some of the key issues you are dealing with or may experience in the future as an adult sibling.
It’s likely that you have experienced a lifetime of your needs coming second (or third, or fourth) to other people’s. For this reason, it can be particularly hard for siblings to meet their own needs (such as to get enough rest, to do something they enjoy, to say no when they need to). But self-care is not a self-indulgent luxury. It is an absolute necessity. The guides below relate to the care and support of your brother or sister – don’t forget to check out the guide that’s written for you, too. Click here for our eBook “Self-care for siblings”
Decision-making and the law: When your brother or sister can’t make a decision, who does?
Mental capacity laws affect the way services are provided for your brother or sister and the way professionals carry out decision-making. This is a hugely important issue to have knowledge about as an adult sibling of someone with a learning disability and/or autism. Being next of kin by itself does not give you any legal rights as a sibling. This is also the case for your parents. We recommend that you take time to read our guide on mental capacity so that you feel empowered to be involved in the decision-making processes about your brother or sister’s finances, living situation, friendships, health and wellbeing.
Download Sibs – Guide for adult siblings on decision-making and mental capacity – March 2018
Keeping savings safe: When your disabled brother or sister can’t manage a large amount of money, who can?
As a sibling of someone with a learning disability and/or autism you may have thought about financial provision for your brother or sister in the future. It can be difficult for siblings to talk to their parents about these issues. It is even harder for siblings who are left with difficult financial situations to deal with after their parents are gone. Many siblings have questions about how savings or assets affect their brother or sister’s benefits or how owning a house might affect their contribution to care costs. Feeling more informed about wills and trusts can be a weight off your mind. Read our guide and take action today.
Download Sibs – Guide for adult siblings on wills and trusts – March 2018
Looking after money: When your disabled brother or sister needs support to manage their benefits and funding
Many people with a learning disability and/or autism need support to manage their finances and to help them receive the right benefits. This can be complex and confusing for siblings, particularly if you are taking on this role from your parent. This guide will give you information about the types of financial support available for your brother or sister, including benefits, grants, and personal budgets. It will also tell you about the different types of special legal permissions you need in order to manage someone else’s finances or to make financial decisions on their behalf, such as power of attorney or deputyship. You might be unsure whether you need legal permissions like power of attorney or deputyship, or which would be the most appropriate to apply for. This guide includes a useful flow chart, explaining the difference between power of attorney and deputyship and includes further links and advice on how to apply.
Download Sibs- Guide for adult siblings on managing finances – March 2018
When your disabled brother or sister needs support: How to get a care needs assessment
If your brother or sister needs care and support because of their lifelong disability, then the local authority (or health and social care trust in Northern Ireland) has a duty to carry out an assessment. Contact the adult social care department where your brother or sister lives and request an assessment. Some local authorities may not provide support if they feel that the need is already being met by a family carer. At the time of assessment, be clear about what you can and cannot do for your brother or sister – it is your choice whether to be involved or not in their care. Use this guide to help you prepare for an assessment and to understand what the process involves. This guide assumes that your disabled brother or sister is over the age of 18 as the assessment process is different for people under the age of 18.
Download Sibs – Guide for adult siblings on getting a care needs assessment – Jul 2023
Coping with managing your disabled brother or sister’s care
Many siblings are doing care tasks for their brother or sister who has a learning disability and/or autism, such as liaising with adult social care, attending meetings and appointments, managing finances or providing day to day hands-on care. It can be difficult to balance being a carer with having your own life. Guilt, resentment, exhaustion and burnout are common experiences for sibling carers and we want to help you avoid these. Sibling carers are up against an inadequate health and social care system, and meet frequent challenges co-ordinating their brother or sister’s support – such as inconsistent staff at residential homes, difficulty finding personal assistants and a lack of input from adult social care. If you are an adult sibling carer who is experiencing this – you are not alone. Read our guide on coping as a carer and managing care packages to get advice with these issues today.
Sibs – Guide for adult siblings on coping as a carer and managing care packages – Nov 2018
What to do if your disabled brother or sister doesn’t receive the care that they should
Unfortunately, many siblings tell us that their brother or sister with a learning disability and/or autism has experienced discrimination, has received poor care or has been mistreated. Siblings can feel ignored by service providers who don’t recognise the sibling role, and who dismiss a sibling’s concerns. Siblings often feel upset or guilty themselves, at having seen their brother or sister experience substandard treatment. Read our guide on making a complaint to feel more informed and empowered when raising an issue about your disabled brother or sister’s care.
Download Sibs – Guide for adult siblings on making a complaint – March 2018
Top tips for adult siblings on working with care providers
Working with your brother or sister’s care home or supported living setting can be difficult at times. You might feel that your views aren’t listened to or that you aren’t kept up to date with important issues. Have a look at our top tips for siblings on this issue, and take action to improve your working relationship.
Download Sibs – Top tips for adult siblings on working with care providers
Care provider statement of intent to involve siblings
Care homes and supported living settings that recognise and value siblings want to actively involve them in their disabled brother or sister’s care. Care providers can demonstrate their commitment to communicating with, listening to and involving siblings by signing this statement of intent. Siblings – take this to your brother or sister’s care provider and ask them to sign it.
Download Sibs – Care provider statement of intent to involve siblings
The impact of behaviours that challenge on you: When your disabled brother or sister’s behaviour is harmful or aggressive
As a sibling of someone with a lifelong disability you may have experienced behaviours that challenge from your brother or sister. You may have experienced this growing up with your brother or sister, and may have had little support or information at the time. You may be struggling with understanding your brother or sister’s behaviour as an adult and may be wondering what steps you can take to help your brother or sister with this. Read our guide on behaviours that challenge to help you to understand why behaviours that challenge occurs, recognise how it impacts on you as a sibling and address how you can support yourself and your disabled brother or sister.
Download Sibs – Guide for adult siblings on impact of behaviours that challenge – Aug 2023
Thinking about the future
Questions about the future are some of the most common we receive at Sibs. You might be wondering how to talk to your parent/s about your disabled brother or sister’s future care. You might be thinking about your own future too – decisions like moving out of the family home or having your own children. It can feel overwhelming to think about these things however you may experience ongoing worry if you don’t set aside time to think about them. As well as reading our guides on practical topics like wills and trusts, make sure you read this guide on thinking about the future as it will help you to make decisions about the things that matter to you.
Download Sibs – Guide for adult siblings on thinking about the future – Nov 2018
Talking to your parents about common sibling issues
We receive many enquiries from adult siblings about talking to parents about sibling issues. You might want to discuss your brother or sister’s future care, suggest changes in routine or set boundaries around the time you spend caring. These issues can be difficult to talk about but when they are neglected they can weigh on your mind. Don’t let your worries go unheard – read our guide on talking to your parents and get started today.
Download Sibs guide for adult siblings on communicating with your parents – Nov 2018