• You can join one of our friendly online peer support groups for adult siblings. Find out more and sign up here.
• Chat with others on our private facebook group for adult siblings, called #Siblife
  

You’re not alone! This is very common for siblings. Read our advice on coping with feelings here.

This is another very common feeling for siblings to experience. Read our advice on coping with loneliness here.

Some siblings live with stress, anxiety or depression for a long time – too long, in fact, because they feel like it’s an inevitable part of their lives. It doesn’t have to be. There are a whole range of treatments and support available.

• We appreciate that in some areas booking a GP appointment can be really challenging, however we strongly encourage you to see your GP and talk through your symptoms. If you are a carer for your disabled brother/sister make sure your GP knows this too, as local support may be available
• You may also be interested in our advice on how to find a counsellor
• Apps like Calm and Headspace
• Find out more about mental health at mind.org.uk
• Search for support in your local area on the Hub of Hope website
• Some siblings find that reading more of the Sibs website helps reduce their anxiety as it helps them to feel less alone in their experiences. Download our eBook ‘Self-care for siblings’, read the real-life experiences from other siblings or read more about the positives and challenges of being a sibling.

Other related pages:

• Coping with feelings
• Dealing with trauma after abuse
• Adult sibling bereavement

Further mental health information and support:

• Anxiety UK
• Bipolar UK
• Beat eating disorders
• Mind
• OCD UK
• PTSD UK
• Rethink mental illness
  

You are not alone – reach out for support:

• To talk about anything that is troubling you, call Samaritans on 116 123 any time of day or night or email [email protected]
• Prefer to text? Use the ‘Give us a shout’ text service. Text ‘Shout’ to 85258 to talk about your feelings, at any time of day or night
• CALM (for men). Phone line 0800 58 58 58, open 5pm – midnight. Webchat service here
  

You’re right, there’s a lot to think about! When an adult sibling finds Sibs they often say “I never knew there was a charity for siblings!” and feel really surprised to learn that they have needs too. They might also feel a huge sense of relief, as if part of a jigsaw puzzle is slotting into place. Growing up with someone who has a lifelong disability will shape who you are, in the same way that any experience does. You might find it helpful to explore this more:

• Read about the positives and challenges of being a sibling
• Download our eBook, ‘Self-care for siblings’
• Read real-life experiences from other siblings

Take this a step at a time, as it might feel overwhelming to read it all at once. You might also find it helpful to write or draw about your experiences, talk to a trusted friend or join a sibling support group. You can also connect with siblings on our private facebook group, #Siblife.

This is a good question to ask, as all counsellors are different and it’s important to find someone you feel comfortable with. Read our advice on how to find a counsellor here.

You are not alone in feeling impacted by this. As one sibling told us, “[The abuse] was like an explosion that rippled outwards – it affected us all”. As an adult sibling you may be a key support for your brother or sister through this very difficult time and it is important that you look after yourself too. Read more advice for siblings on dealing with trauma after abuse here.

Many people find it hard to take up and continue a healthy lifestyle and this can be especially challenging for siblings because of the competing demands on their time. But looking after your physical health is one of the best investments you can make in yourself – and it doesn’t have to be the most time consuming.

• Speak to your GP about any ongoing or new health conditions that are troubling you – don’t ignore them
• The NHS website ‘Better Health’ has some realistic and useful ideas to help you lose weight, quit smoking, get active and drink less
• Are you underweight? Read advice from the NHS on how to gain weight healthily. If you’re concerned your weight is a symptom of an eating disorder, speak to your GP and go to Beat eating disorders for more information and support
• Want to improve your Sleep? Cognitive behavioural therapy (CBT) based programmes can help, even if you work shifts looking after your brother/sister.
  • In Scotland, you can access the Sleepio app (a CBT based 6-week programme) as this is covered by the NHS
  • Apps like Headspace and Wysa also include support with sleep
• You may be able to track your health progress on an in-built app in your phone, or using an app like MyFitnessPal
  

You’re not alone. We hear many siblings who tell us they put up with their back problems or haven’t been to the GP about their anxiety, because in comparison to their sister who has regular hospital admissions for heart problems, these issues can feel much smaller. This can be an ingrained habit for some siblings, perhaps something that started in childhood because of the way that parents saw these issues too. But it doesn’t have to be this way. Here’s our advice:

• Compare yourself to yourself. What is ‘good health’ for you? What could you improve? What are you ‘putting up with’ that you shouldn’t have to?
• Ask yourself this question: ‘When I don’t go to the GP about my anxiety, who benefits from this?’. The answer is no one
• Many siblings unconsciously wish that they could give their health to their brother or sister, that they could ‘share out the good health evenly’ if this were possible. If you feel this way, acknowledge it, and remind yourself that you would if you could, and you can’t. And not resolving your own health issues doesn’t gift more health to your brother/sister
• If you feel like you’re strongly affected by this issue, consider having counselling to explore it further. Read our advice on how to find a counsellor
• Join a sibling support group or facebook group to meet others who understand what sibling life is like

“Growing up with a disabled sister meant that my parents worried a lot about her health, and while I’m sure they didn’t mean for this to happen, I started to feel bad about my own health – like survivor guilt, almost. I think my eating disorder was directly influenced by the environment I was in and the messages I received. It was part self-punishment but also a way of proving that I had needs, and I wasn’t always “okay” like other people seemed to think” – Adult sibling

No. You have no legal responsibility to care for your brother. It is your decision whether you become involved in his care or not.
Some siblings feel that the role of keeping an eye on their brother or sister is automatically left to them, upon the death of parents. Siblings may find themselves changing jobs or moving house, in order to live closer to their brother or sister. It’s important to know that you do have a choice in the level of involvement that you have. Some siblings may choose to become very involved with their brother or sister’s care, and others may choose not to – and there are many different levels of involvement in between. You have no obligation to have any contact with your brother if you don’t want to. Your relationship with your brother is yours alone – no one can tell you what is right for you both.

No. As a sibling, you have no obligation to pay for your sister’s care. The local authority has a duty to assess your sister’s care needs, and to put support in place if she is eligible to receive it. They will only assess her finances – not yours.

Planning for the future can feel like an overwhelming topic for siblings. Write down all your concerns and all your wishes. What would you like for your brother in the future? How much involvement would you like in his life and in what ways would you like to have this? You don’t have to have definite answers – you just have to give yourself space to think about it. Talk to your brother (if appropriate), your parent(s), a trusted friend, do research online or seek counselling.

There’s a really useful guide called Thinking Ahead: A Planning Guide for Families. This downloadable resource available from Together Matters, covers all aspects of future care in manageable chunks. There’s also a version for your brother to use if he is able to, called I’m thinking ahead. Whilst this guide is aimed at families of someone with a learning disability, many others may find it helpful too.

If your sister is still living with your dad – and always has done – it may be very difficult for him to imagine a time when she will not be there. It’s a really tough topic to address. Approaches you can try are:

1. Little and often. There is a lot to consider with future care so break it down into small chunks. For example, ask your dad one question per week. Take care over the time, place and way that you bring up the topic. Change takes time. Try this over the course of a year.
2. Come back to it at a later date. If you feel the little and often strategy isn’t working, wait a while before raising the topic again. This may feel counter-intuitive and exactly the situation you are trying to avoid – but people take action in their lives for different reasons. It may be easier to engage your dad in a discussion when there has been a change in the situation e.g. your sister’s needs have changed, or your dad’s ability to cope or provide care has changed
3. Identify someone else who can raise the issue. There may be someone else who can start the conversation with your dad – another sibling, another relative or a trusted professional. They may be able to raise the topic whilst you are with your dad or they may be able to persuade your dad to talk to you about it.
   

It’s important to remember that you need to make the best decision for you. If your brother needs more care and support, this needs to be assessed by the local authority. You have no legal responsibility to care for your brother. Staying at home to care for your brother – at the expense of leaving home to follow your own interests – may result in you feeling resentful towards him.

If you choose to go to university, remember that:

1. You can come back and visit. When you do, you will be more likely to spend positive time with your brother and you will have new experiences to share with him
2. You can keep in touch. If your brother isn’t able to keep in touch by phone, email or video calls– send something in the post that you know he will enjoy, such as a photo or a bar of chocolate
3. You can find support. Connect with other siblings at your university, set up a support group and make new friends. You are not alone in feeling this way

Read Holly’s story of moving away to university.

You’re not alone, as we hear from many siblings who want to lead their own lives. A life that’s centred around what they want and not their brother or sister’s needs. It’s often hard for siblings to live their own lives because:

1. Other people put pressure on them to focus on their brother/sister’s needs (such as parents, other family members, society etc). This might be direct (“You’ll need to take care of your sister when I’m gone”) or indirect (e.g. lots of compliments/praise for being a “good” or “selfless” person when you provide care – or judgment when you don’t).
2. They have never known a life that’s any different. Siblings are often so used to coming second (or third, or fourth…) to the needs of another that it can be very hard for siblings to actually think about what they would choose for themselves if their brother/sister’s needs weren’t a factor.

Here are some key things to remember:

1. You deserve to have a life that you love, because you matter, in your own right.
2. Your relationship with your brother/sister is yours alone – no one can tell you what is right for you both.

Here are some suggestions:

1. Write a list of what you would like for your future. What are the top three things that make you happy?
2. Can you experiment with any of the things on your list? If something on your list is that you’d like more time by yourself, can you start with a daily 10 minute walk around the block? Start small, try things out, and build up from there.
3. Don’t go it alone. Join a sibling support group and our private Facebook community #Siblife.

You’re not alone. This is a huge fear shared by many siblings in similar situations and it can be really difficult to face.

1. Make a list of all your worries. Don’t censor yourself, let everything come out.
2. For each worry, circle the ones that you can control.
3. For each worry that you can control, think about what you can put in place now that might help you to feel a little more reassured about your sister’s future. Use the planning guide below to help you.
4. Recognise that there will be things on your list that you can’t control – much as you desperately want to! You just want your sister to live a safe and happy life. That’s not a lot to ask. If you find yourself worrying excessively, please find a counsellor and seek help with this.

Use planning guides to help:

• Thinking Ahead: A Planning Guide for Families. This downloadable resource available from Together Matters, covers all aspects of future care in manageable chunks. It includes making a plan for emergencies, which might reassure you if you were to become ill very suddenly. There’s also a version for your sister to use if she is able to, called I’m thinking ahead. Whilst this guide is aimed at families of someone with a learning disability, many others may find it helpful too.
  

“I have a difficult relationship with my Mum, who lives with and cares for my brother who has Down Syndrome. My Mum has stopped me from seeing my brother and won’t let me in the house. I’m devastated. I know he wants to see me. Can she do this?” – Adult sibling

No, your Mum cannot prevent you from spending time with your brother without good reason.

If your brother is over 16, he is seen as an adult in his own right in terms of the law. This means that it is his choice, and your choice, to have a sibling relationship. As his carer, your Mum would need good reason to prevent you from spending time together. For example, if your Mum had evidence to believe that you were a safety risk to him.

Contact Adult Social Care at your brother’s local authority. Tell them you are being prevented from seeing him, and that you believe this is not what he wants. A social worker should intervene, and should support you to have contact with your brother on a regular basis.

The social worker should ask your brother if he wants to see you, not your Mum. If the social worker is unsure if your brother has the ability to make this decision, they may complete a mental capacity assessment. If your brother is deemed not to have the ability to make the decision to see you, a best interests decision should be made. This decision should take into account all the evidence from people closely involved in his care.

You know your brother inside out. You know the way he responds to you when you walk into a room, how he lights up, the way he smiles and laughs when you share an in-joke, a favourite programme or a song. Write down every piece of evidence you have that shows he wants to see you and demonstrates the strength and importance of your relationship. If your relationship is questioned, you may need this evidence to ensure the right decision is made to help you both to have contact again.

If your sister is still living with your dad – and always has done – it may be very difficult for him to imagine a time when she will not be there. It’s a really tough topic to address. Approaches you can try are:

1. Little and often. There is a lot to consider with future care so break it down into small chunks. For example, ask your dad one question per week. Take care over the time, place and way that you bring up the topic. Change takes time. Try this over the course of a year.
2. Come back to it at a later date. If you feel the little and often strategy isn’t working, wait a while before raising the topic again. This may feel counter-intuitive and exactly the situation you are trying to avoid – but people take action in their lives for different reasons. It may be easier to engage your dad in a discussion when there has been a change in the situation e.g. your sister’s needs have changed, or your dad’s ability to cope or provide care has changed
3. Identify someone else who can raise the issue. There may be someone else who can start the conversation with your dad – another sibling, another relative or a trusted professional. They may be able to raise the topic whilst you are with your dad or they may be able to persuade your dad to talk to you about it.
   

Tell your parents what you need. Whilst it may feel obvious to you, it may not be obvious to them. It also may be hard for them to acknowledge that they haven’t met some of your needs up until now. Take it a topic at a time and make your suggestions specific.

Consider the difference between:

“You always talk about my brother, but I want you to talk more about what’s going on in my life”

and

“Let’s talk about my brother first for about fifteen minutes and then let’s talk about my children; job-hunting; decorating…”

The second statement clearly explains that you want to discuss a specific topic in your own life and still provides space to discuss your brother.

Some adult siblings think of a ‘carer’ as a family member who lives with their brother or sister and helps with:

• Washing and dressing
• Making meals and drinks
• Cleaning and laundry

But the definition of a carer is actually much wider than this. Think about what you do for your brother or sister that you wouldn’t do for an adult without a disability. This might include:

• Answering the phone to your brother five times a day when he calls for support or because he is lonely
• Reading through bills with your sister and helping her to understand them
• Advocating for your brother’s needs at meeting with a social worker
• Phoning a hospital when your sister is admitted to let them know how she prefers to communicate

You do not need to live with your brother or sister to think of yourself as their carer. Your brother/sister might live:

• In residential care
• In supported living
• With your parent(s) or other family members
• By themselves, with a housemate or with a partner

Recognising the role that you play in your brother or sisters life can help you to access more support for yourself. Benefits of recognising yourself as a sibling carer:

• Protection from discrimination under the Equality Act 2010*
• Right to request flexible working hours and to have time off in emergency situations
• Recognition of your role within other services. Some GP services allow sibling carers and their disabled brother or sister to visit the surgery at the same time to avoid two trips and have earlier access to new vaccinations
• Having a carers assessment, to look at the support you need to continue your caring role
• May be entitled to carers allowance, depending on the number of hours you provide care

*England/Wales/Scotland. In Northern Ireland you are protected under the Human Rights Act and Section 75 of the Northern Ireland Act. This requires public bodies to promote equal opportunities for carers.

As a carer for your disabled brother or sister, you can request a carer’s assessment from the local authority. This looks at your needs as a carer, not at your brother or sister’s needs (if your brother or sister needs more support, ask the local authority for an assessment of their needs). The carer’s assessment should look at what support you need to keep caring, such as respite breaks.

Find out more about a carers assessment from Carers UK

Other types of support for you as a sibling carer:

• Join a sibling support group or facebook group
• Search online for your local carers association
• Find support on other facebook groups relating to your brother or sister’s diagnosis.
  

You might be able to claim Carer’s Allowance if you’re looking after your brother or sister for 35 hours a week or more and your earnings are below a certain cap. Visit Gov.uk to check the eligibility criteria for Carer’s Allowance. You don’t have to live with your brother/sister to be claiming Carer’s Allowance, but if someone else (such as a parent) also cares for your brother/sister, then only one of you can claim.

Carer’s Credit may be helpful if you aren’t eligible to receive Carer’s Allowance and spend 20 hours a week or more caring for your disabled brother. Carer’s Credit helps to fill in the gaps in your National Insurance contributions. Whilst this isn’t direct financial support, receiving credits may help you in future if you apply for National Insurance based benefits yourself, or State Pension.

Use the Turn2Us benefits calculator to make sure you are claiming all the benefits that you are entitled to. It’s advisable to do this once a year, as benefit guidelines do change or your circumstances might have changed.

Find out more:

• Carers UK – Carer’s Allowance
• Carers Trust – Money and benefits
• Citizen’s advice – Benefits
  

At work, you have statutory rights and contractual rights. Your statutory rights are the ones that are written in law. Your contractual rights are the ones that are written into your work contract.

As a carer, you have statutory rights to:

• Time off for caring emergencies
• Request flexible working
• Protection from discrimination

Find out more about your rights as a carer at work from Carers UK

It’s advisable to look back at your employment contract or speak to your employer about their policies in this area.

Read about the experiences of sibling carers who have spoken to their employers about their caring role:

• Read Matt’s story
• Read Abby’s story
  

Yes. You’re entitled to time off from work to deal with an emergency. An emergency might include a breakdown in the current care arrangements or an illness (including an exacerbation of a current illness or disability). You don’t have to provide proof and you don’t have to put your request in writing. You don’t have to be ‘the main carer’ or have proof of your caring status. The requirement is that ‘someone depends on you for care’.

You’re allowed ‘a reasonable amount’ of time off, and there’s no set amount in law as it depends on the situation. For example, an employer might allow you emergency carers leave so that you can sort out an urgent breakdown in care arrangements, but may ask you to take compassionate leave or annual leave if the situation continues.

Whether emergency carers leave is paid or unpaid will depend on your employer and what policies they have. They don’t legally have to provide this as paid leave.

You can find out more here.

Yes. Check if your employer has a policy around planned carers leave, as you may be entitled to a certain amount of paid leave (meaning you don’t need to use your annual leave entitlement).

If they don’t, you may be entitled to unpaid leave. In England, Wales and Scotland the Carers Leave Act 2023 (comes into force 6th April 2024) entitles you to take planned leave to take care of your disabled brother or sister. There is currently no equivalent law in Northern Ireland.

Here are some key points about eligibility for planned carers leave under the carers leave act:

• You can take leave “to give or arrange care for a ‘dependant’ who has a disability”
• You don’t need to live with your brother or sister to take carers leave, they just need to “rely on [you] for care”
• You don’t need to provide proof that you’re a carer or that your brother or sister is disabled

Here are some key points about taking planned carers leave:

• You can take up to your usual working week each year (e.g. if you usually work three days a week, then you can take three days a year)
• You don’t have to take it all at once. It can be taken in half or full days
• If the request is for a half-day or a day, you need to give at least 3 days notice. If it’s more than this, you need to give double the amount of notice for the time you intend to take (e.g. if you want to take 2 days, you need to give at least 4 days notice)
• If you have more than one disabled brother/sister you can still only take one week of carers leave in total and you’d need to share this between them
• You can use the leave to give care (such as attending a hospital appointment) or arrange care (such as liaising with social workers and managing a care package)

Find out more here.

Universities should offer support to students who are carers. What’s available will vary from university to university. The kind of support that might be available could include:

• Financial support, such as grants, bursaries and hardship funds
• Support with managing workload and deadlines (some may offer lower grade boundaries)
• Emotional support, e.g. counselling or communities/support groups for carers

Find out more:

• UCAS – Students with caring responsibilities
• Carers Trust – Supporting higher education students with caring responsibilities
• Read Holly’s story: Holly – “How my sibling relationship changed as I moved away to university”
  

You’re not alone! Many siblings in this situation experience resentment or guilt. It can feel like being between a rock and a hard place where neither choice feels like a good one. Some siblings feel angry that this is the life they have been given and that they have had no say about being placed in this situation.

Some siblings feel that after their parents die, they become ‘next of kin’ and have parental or caring responsibilities for their disabled brother or sister. This isn’t the case. Siblings have no legal responsibility to provide care and support.

It doesn’t have to be an all-or-nothing situation. Try and find a way that works for you without the resentment, by just doing what you can. What tasks a sibling can and cannot do needs to be a discussion between the sibling, their disabled brother or sister, and adult social care.

It’s OK to say no to tasks that you don’t want to do. You are taking care of yourself and in the long run, this is a much better decision for both you and your brother. In fact, it’s vital.

Remember – it’s OK to have your own life.

You might find it helpful to chat with other siblings who feel the same about this. Join a sibling support group or facebook group.

Here’s our advice for building a better relationship with care home providers:

1. Be confident. You do have the knowledge, you do have the expertise and you have built up years of experience on your brother or sister’s medical, behavioural, communication and personal needs.
2. Build relationships with the people who acknowledge and support you in your role as an advocate or carer for your brother or sister e.g. a strong relationship with an epilepsy nurse will be helpful if care home staff struggle to recognise seizures.
3. Communicate clearly with managers who are ultimately accountable for your brother or sister’s care. If things go wrong, a good manager will take responsibility and work with you to make changes. Be assertive, not aggressive – this will get you better results.
4. Be kind to support workers as they have a difficult job and often receive little recognition for their role. Thank them when they go the extra mile. They will be more likely to do it again in future and build a positive relationship with your brother or sister.
5. Know the difference between a personal mistake and a poor culture. Mistakes will happen – we are all human. It’s important to recognise the difference between a personal mistake that someone takes responsibility for, and an organisational culture of poor care, neglect or abuse. If the latter is in effect, take action and make a formal complaint and report safeguarding concerns.
6. There are ways you can be more assertive. You may find that it’s difficult to put your point across when you’re face-to-face with people. Send an email in advance or jot down relevant points to take with you. Take a friend, and ask them to remind you of the points you want to make. Just having someone with you can boost your confidence to communicate your views. They can also help by taking notes of what was said in the meeting.
7. Know that you can change providers if the organisation does not meet your brother or sister’s needs. Even if you have been told there are few providers in your area, it’s important to tell adult social care that your brother or sister’s needs are not being met by the current care provider.
   

It’s really frustrating when you’re not listened to as a sibling, and it’s not acceptable. You have such a valuable role in your sister’s life and you deserve to be heard. Here are some suggestions for tackling this:

1. Be specific about what help your sister needs. For example, don’t say ‘My sister needs someone to check in on her’, say ‘My sister needs reminding to brush her teeth and take her medication every day’. Read our guide on getting a care needs assessment for more detail.
2. Don’t let somebody tell you that you are not allowed to give your opinion as a sibling. As a close family member with an active interest in your sister’s wellbeing, your opinions on her care should be heard.
3. Get support for yourself. The phone calls and letters can feel endless at times – make sure you take some time out for yourself too and that you have your own life. You must look after yourself first in order to look after your sister.
4. If you want to make a complaint, do so in writing and be clear about the outcome you would like for your sister. Keep a record of your complaint and consider taking your complaint further if your complaint is not resolved. Read our guide on making a complaint for more detail.
   

Your brother may be eligible for a specific grant from the local authority. What is available will depend on which of the UK countries he lives in and what his needs are.

In England, Wales and Northern Ireland you can apply to the local authority for a disabled facilities grant. In Scotland, The Housing (Scotland) Act 2006 allows local authorities to provide a grant for home adaptations required due to disability. Contact your local authority to find out what may be available to your brother. Read more about housing grants on the Disability Rights UK website here.

If you haven’t already, see if you sister is eligible for a medical exemption certificate. These are given to people with certain ongoing health conditions and it means your sister would receive her NHS prescriptions for free. It’s also worth checking if your sister is entitled to an NHS tax credit exemption certificate. Some people on a low income and in receipt of certain benefits may be eligible for this certificate. It entitles the person to free prescriptions, dental treatment, sight tests and the cost of travel to receive NHS treatment. If your sister isn’t eligible for this, try the NHS low income scheme, which will help with these costs. A final alternative, if your sister is not eligible for any of the above, would be to consider using a Prescription Prepayment Certificate (PPC). You pay a set amount upfront for 3 or 12 months, and receive the certificate. The certificate then covers the cost of your medications in that time. It’s cost effective if your sister has 2 or more regular prescriptions.

You brother is not alone – adults with learning disabilities are 10 times more likely to have a significant sight problem, yet much less likely to have eye tests or access the necessary prescriptions and treatments.

SeeAbility is a charity that promotes eye care for people with learning disabilities and autism. Their website has a wealth of helpful information, including:

• Easy-read fact sheets and advice
• A database of opticians’ practices who have experience of providing eye tests to people with learning disabilities and autism
• Eye care champions who can advise or signpost

Visit www.SeeAbility.org

Health and social care staff sometimes forget that the words they are using are jargon – it’s OK to remind them. Ask them to explain what they mean, and don’t be afraid to ask several times if their descriptions are still not clear.

There’s also The Care and Support Jargon Buster. This is an online plain English guide to the most commonly used health and social care words. You can search for a word or phrase and find out what it means. The definitions are in plain English rather than legal.

You can contact a patient advice service. These are independent services that are free to access and can provide information and guidance on what to do next. If you do choose to complain, they can support you through this process too. Putting in a complaint should never affect a person’s care.

England and Wales

• Contact the Patient’s Association

Scotland

• Contact the Patient Advice and Support Service 

Northern Ireland

• Contact the Patient and Client Council

Continuing healthcare (CHC) funding is available to some people with long-term and complex needs in England only. The funding is provided by the NHS and covers the person’s social care needs. Your brother would need to be assessed for eligibility. You can find out more about CHC funding, including the checklists that are used to determine eligibility here.

For free, independent advice on NHS CHC funding, contact Beacon.

‘Mental capacity’ refers to a person’s ability to make decisions. Whether someone lacks capacity is determined on a decision-by-decision basis. For example, your brother may have the capacity to decide what to eat, but may not have the capacity to decide whether to have an operation or not.

Your brother can’t be labelled as ‘lacking capacity’ in all areas. If someone suggests that your brother ‘lacks capacity’, your next question to them could be ‘lacks capacity for what decision?’

Different laws in the UK countries govern mental capacity:

• In England and Wales this is the Mental Capacity Act 2005
• In Scotland this is the Adults with Incapacity (Scotland) Act 2000
• In Northern Ireland this is the Mental Capacity Act (Northern Ireland) 2016

Read more in our guide on Decision-making here.

You and your family might think of yourselves as ‘next of kin’, but the law doesn’t recognise that next of kin have the right to make decisions for someone else. All adults have the right to make their own decisions wherever possible and mental capacity laws apply to everyone, not just paid carers or professionals.

If a person is unable to make a decision for themselves, the law states that others can act in their ‘best interests’. Your knowledge of your sister will help you judge whether she can make a decision or not. So as long as you are acting in your sister’s best interests, you and your Dad can continue to make most day-to-day decisions on her behalf.

If you want to help your sister manage her benefits, then you can become her appointee. You can apply to become an appointee through the Department of Work and Pensions here, and there is no cost to this. Being an appointee doesn’t cover savings or managing property – for this you would need a different permission.

If you want to help your sister with bigger financial decisions, like managing savings or property, then you will need to apply for permission to do this. The process and the cost of this varies depending on which country you live in:

• In England and Wales, this is called power of attorney or deputyship
• In Scotland, this is called continuing power of attorney or guardianship
• In Northern Ireland, this is called enduring power of attorney or controllership

Find out more:

• Download Sibs guide on Decision-Making here (read page 4 for an overview of mental capacity and pages 6-8 for more detail on the question above)
  

There are different laws in the UK countries that determine the permission you need. Different fees will apply.

• In England and Wales, you can apply to the Court of Protection to be his Health and Welfare Deputy
• In Scotland, you can apply to the Sheriff Court to be his Welfare Guardian
• In Northern Ireland there is no way to give a person legal power to make healthcare decisions on your behalf

Download our guide on Decision-making to find out more.

In terms of improving your brother’s quality of life, start by suggesting activities that you feel he would enjoy. Start small – even everyday things like giving your brother a choice of two different drinks offers him more control over his life. It may be easier for your parents, and your brother, to take an introduction to new things gradually. When you’re talking to your parents about local groups or activities you think he’d like, try and leave some written information or a website for them to re-read and think about. Join our private Facebook community #Siblife to chat with other siblings who have also faced this issue.

Your views are important. You have the lived experience of growing up with your sister. Your parents, family friends and any health or social care professionals involved with your sister’s care haven’t had the same experiences as you and don’t know your sister in the same way. If you have suggestions you would like to share in a decision-making process you can contribute these as an individual in your own right. Any decisions which are made in your sister’s best interests should be made whilst collaborating with those who know her well – including siblings. Let any professionals involved with your sister’s care know that you would like to be involved and to include you in invitations to meetings.

It depends on whether your brother is able to understand the long-term implications of not brushing his teeth:

• If he does – and he still chooses not to – then yes, it is his decision to make
• If he doesn’t – then a best interests decision needs to be made and he needs to be supported in looking after his teeth

You know your brother well and will probably be aware of his ability to understand the long-term consequences. Discuss this with the support workers and see if they can support your brother to brush his teeth in other ways – using a particular paste, brushing to music or doing it at a different time of day. You will be able to give them ideas on what might work and what won’t.

If the support workers are unresponsive to this, contact Adult Social Care for advice. They can carry out a formal mental capacity assessment for your brother. They can hold a meeting with support workers to ensure a new method for supporting your brother to brush his teeth is included in his care plan.

Read more about mental capacity in our guide on Decision-making here.

If you don’t agree with a decision that’s been made, you can ask for a best interests meeting to discuss the situation with staff members. You can give your perspective and ask them to discuss theirs in more detail. Care home staff should be documenting such decisions and be able to justify them.

If you still disagree with the decision, you can make a complaint in writing to the care home manager, clearly stating what you feel your sister’s best interests are in this situation. If you believe that your sister is at risk of neglect or abuse you can contact Adult Social Care to make a safeguarding referral.

No. As a sibling, you have no obligation to pay for your sister’s care. The local authority has a duty to assess your sister’s care needs, and to put support in place if she is eligible to receive it. They will only assess her finances – not yours.

It depends on where your brother lives and how much he has in savings. Some benefits (such as Universal Credit) are means-tested and capital such as savings and property will be taken into account alongside income. Other benefits (such as PIP) are not means-tested. Use a benefits calculator to gauge how your brother’s savings may affect what benefits he can claim.

Care and support from the local authority is means-tested. The local authority can challenge and reclaim money from a person, if they have concerns that someone has intentionally decreased their overall assets to avoid paying for their care (e.g. by transferring their savings to another person).

• England – the government sets different financial thresholds, to determine whether a person will pay towards their care or not. These are called the ‘upper capital limit’ and the ‘lower capital limit’. If someone has less than the lower capital limit in savings, they will not pay towards their care. If they have between the lower and upper limit, then they will need to contribute a certain amount (and how much they pay will be determined by a financial assessment). If they have more than the capital limit, then they will have to fund the full cost of their care. To find out the current upper and lower capital limits as set by the government, visit www.gov.uk
• Wales – charges vary between local authorities and they must publish information about their charging procedure. Most people will be expected to pay something towards the cost of their care.
• Scotland – charges vary between local authorities. Most people will be expected to pay something towards the cost of their care (personal care for over 65s is free). The value of your home is not counted as capital.

Northern Ireland – charges vary between Health and Social Care Trusts. Care for over 75s is free.

In England and Wales, a personal budget is an amount of money that is provided by your local authority to meet your disabled brother or sister’s needs. In Scotland and Northern Ireland, a personal budget is referred to as self-directed support.

The amount of money is specific to the individual based on their needs at the time of their care needs assessment – it is not dependent on their diagnosis. However, the local authority should be able to give you a rough idea of what your brother or sister may be entitled to (an indicative budget).

These are the main ways that your brother or sister’s budget could be received and managed:

1. The local authority holds the budget and arranges and pays for the care and support services for your brother or sister.
2. You or another family member receives a Direct Payment and you arrange and pay for the care and support for your brother or sister. Your brother or sister will need a specific bank account for this that you have legal permission to manage. In some local authorities you can use a third party to receive and manage the payments on your brother or sister’s behalf.
3. A mixed budget – the local authority keeps some of the budget and arranges some services; you receive some budget as a Direct Payment and arrange some of the care and support for your brother or sister.

You and your brother or sister should be involved in decisions about how the budget is spent.

In England, some people may also be identified as having health care needs as well as social care needs. They may receive a personal health budget, a personal social care budget (as described above) or a combination of the two. Personal health budgets are not available in Wales, Scotland or Northern Ireland.

No, receiving direct payments will not affect the benefits your sister is entitled to. Direct Payments are an agreed amount of money given directly to your sister (or nominated person) from her personal budget. The aim of Direct Payments is to give people more choice over the support they receive – for example, by employing their own support workers – rather than the local authority arranging and paying for this directly.  The money received does not count as income and does not affect other benefits. It is solely to be spent on the agreed care and support needs (e.g. a support worker), so your sister may need to keep receipts to show how the money has been spent.

Your mum is currently classed as an employer. She has to fulfil her responsibilities as an employer including paying salaries and pensions, keeping track of hours worked, and doing a staff rota if more than one person is employed. Here are some options:

• Your mum can continue with the role and use a local payroll service to do the staff salary payments and related employment paperwork. This is still a large task and if your mum is finding it harder to manage paperwork as time goes on, we wouldn’t recommend this
• You can take on the role of being the nominated person to receive and manage the direct payments as well as the employer role
• Your sister’s direct payments can be used to get care and support through an agency so that the agency takes on the employer role
• Your sister can have her budget held by the local authority and they can arrange and pay for your sister’s care and support

There are pros and cons for each of these and as a family you’ll need to discuss what’s best for your sister versus how manageable each option is for you and your mum. Find out more about direct payments from Carers UK.

There are many different decisions involved in managing money. It may be that your sister is able to make some decisions (such as buying a sandwich when she is hungry) but need support with others (such as spending or investing a large amount of money). Your sister’s ability to make these decisions is referred to as her mental capacity. Read more about this in our guide on decision-making.

If you want to help your sister manage her benefits, then you can become her appointee. You apply to become an appointee through the Department of Work and Pensions, and there is no cost to this. Being an appointee doesn’t cover savings or managing property – for this you would need a different permission. Visit www.gov.uk/become-appointee-for-someone-claiming-benefits for more information and to apply to become an appointee.

If you want to help your sister with bigger financial decisions, like managing savings or property, then you will need to apply for permission to do this. The process and the cost of this varies depending on which country you live in:

• In England and Wales, this is called power of attorney or deputyship
• In Scotland, this is called continuing power of attorney or guardianship
• In Northern Ireland, this is called enduring power of attorney or controllership

Find out more:

• Sibs guide to managing money (read pages 4-6 for an overview of the financial permissions needed to manage someone’s finances)
• Sibs guide to decision-making (read page 4 for an overview of mental capacity)

Download both guides here

If your brother has the ability to understand what is involved with having a bank account in his own name, then yes, he can open and use a bank account. Banks can offer support with this by providing information in an accessible format, providing a chip and signature card (e.g. if a person has difficulty remembering a PIN number) and allowing a person to bank in a branch rather than only online or by telephone. It may also support your brother to have a different type of account, for example one in which he cannot become overdrawn.

What your sister is entitled to will depend on her needs, income and savings. Your sister needs to be assessed for financial support and you can get more information by contacting Adult Social Care in your sister’s local authority. You can get detailed information on different types of benefits, who is eligible and how to apply from Disability Rights UK. You can also use an online benefit calculator to get an estimate of what your sister could be entitled to.

If your sister’s physical abilities have deteriorated significantly, it would be helpful to have her needs re-assessed by the local authority as this may change what personal budget is available to her. Contact the local authority to request a re-assessment of her needs – explain specifically what has changed and how it now affects your sister on a day-to-day basis.

Find out more

By car

• The Motability scheme leases cars, scooters or powered wheelchairs to people with disabilities who are in receipt of certain benefits
• You may be eligible for a reduction or an exemption from vehicle tax – it is dependent on the level of disability and circumstances
• Blue Badge parking scheme – Displaying the blue badge in your car windscreen shows that the driver or a passenger has a disability. It allows you to park in disabled parking spaces, which are closer to shops and facilities. You do not need to be a wheelchair user.
  • England and Wales
  • Scotland
  • Northern Ireland

By bus

• Some local authorities offer concessionary bus travel. Some offer alternative schemes to people who may have difficulty accessing a bus or train, such as ‘dial-a-ride’ – an accessible, pre-booked community minibus.
  • England
  • Scotland
  • Wales
  • Northern Ireland

By train

• Concessionary rail travel across the UK
• Passenger Assist is a service you can book, to help you at stations and on the train. This might be with carrying bags, finding your seat or finding your way to the platform. Support is dependent on the area and often needs to be booked 24 hours in advance
  

Your brother may be eligible for a specific grant from the local authority. What is available will depend on which of the UK countries he lives in and what his needs are.

In England, Wales and Northern Ireland you can apply to the local authority for a disabled facilities grant. In Scotland, The Housing (Scotland) Act 2006 allows local authorities to provide a grant for home adaptations required due to disability. Contact your local authority to find out what may be available to your brother. Read more about housing grants on the Disability Rights UK website here.

If you haven’t already, see if you sister is eligible for a medical exemption certificate. These are given to people with certain ongoing health conditions and it means your sister would receive her NHS prescriptions for free. It’s also worth checking if your sister is entitled to an NHS tax credit exemption certificate. Some people on a low income and in receipt of certain benefits may be eligible for this certificate. It entitles the person to free prescriptions, dental treatment, sight tests and the cost of travel to receive NHS treatment. If your sister isn’t eligible for this, try the NHS low income scheme, which will help with these costs. A final alternative, if your sister is not eligible for any of the above, would be to consider using a Prescription Prepayment Certificate (PPC). You pay a set amount upfront for 3 or 12 months, and receive the certificate. The certificate then covers the cost of your medications in that time. It’s cost effective if your sister has 2 or more regular prescriptions.

You might be able to claim Carer’s Allowance if you’re looking after your brother or sister for 35 hours a week or more. It’s not means-tested but there are limits on the amount of hours you can work in the week. You don’t have to live with your brother/sister to be claiming Carer’s Allowance. If someone else (such as a parent) also cares for your brother/sister, then only one of you can claim Carer’s Allowance.

Carer’s Credit may be helpful if you aren’t eligible to receive Carer’s Allowance and spend 20 hours a week or more caring for your disabled brother. Carer’s Credit helps to fill in the gaps in your National Insurance contributions. Whilst this isn’t direct financial support, receiving credits may help you in future if you apply for National Insurance based benefits yourself, or State Pension.

Use the Turn2Us benefits calculator to make sure you are claiming all the benefits that you are entitled to. It’s advisable to do this once a year, as benefit guidelines do change or your circumstances might have changed. Find out more about Carers Allowance from Carers UK here.

There are numerous charitable funds that award grants to individuals and families meeting their criteria. Some may be focused on certain professions, location, age or disability and others may be more general, such as families in financial hardship. Use the grant search tool at Turn2Us.

Try and find out more information about the situation. Is there someone else you can speak to within your brother’s local community who supports him? They may have similar concerns to you and it can help to share and discuss these.

Take notes on the dates and times of incidents, who was involved and what happened. Keep a record of your brother’s mood or any changes in behaviour that concern you too. This may help you build a case if you need to and also firm up your evidence if you are worried about whether your concerns are real or not.

Being pressured to hand over money is financial abuse. This is a safeguarding concern and needs to be reported to the local authority. Read more about taking action on safeguarding concerns here.

It might be that your sister has very little spending money, despite being in receipt of all benefits she is entitled to. Living in a residential home changes the way a person receives their benefits. Some benefits they receive may go directly to the residential home, in part or in full, to pay for their care. What they may be left with is called their Personal Expenses Allowance. The process of receiving benefits while in residential care can be complicated and can vary between different local authorities. You need to contact the local authority where your sister lives for more information.

There is a way that you can support her with managing what spending money she does have – you can become an appointee. An appointee is someone who manages a person’s benefits on their behalf.

• Check if your university offers grants or bursaries to students who are carers (they may also be able to offer other support e.g. with workload and deadlines)
• Use the grant search tool at Turn2Us, as some funds may be applicable to your caring situation, your course or where you’re from or grew up
  

TV licence

If your brother or sister is registered blind or severely sight impaired, then they can claim 50% off the household TV licence.

Council tax and rates

Some local authorities offer a reduction to people with disabilities. Find out more here:

• England and Wales
• Scotland
• Northern Ireland

Find out more

• Carers First – Discounts for carers
• Money Saving Expert – 30+ money saving tips for disabled people
  

‘Behaviours that challenge’ are a range of behaviours that result in harm to either the person displaying the behaviour or those around them. Harm may include physical and emotional impacts and the person (or their family) being unable to access the community. Examples include:

• Eating everyday objects such as clothing, pillows, cigarette butts
• Destructive behaviours including throwing, breaking or tearing objects
• Self-injury like hand biting, eye poking or head banging
• Hurting others through biting, pinching, hitting, head butting, hair pulling
• Repeatedly screaming, shouting and swearing
• Other behaviours such as smearing faeces, spitting, removing all clothing in public, running away

Find out more:

• Sibs guide Behaviour that challenges
• Challenging Behaviour Foundation
  

It’s really important to seek advice because the behaviour is happening for a reason. A change in behaviour (such as increased aggression) may be reflecting a change in a person’s world. Both your mum and your brother need more support with this situation. Gaining a Functional Assessment for your brother, led by a trained professional working in partnership with family members, is a vital step.

In the short term, talk to your mum first and highlight the vulnerable position that she and your brother are in. If it helps, show her the Challenging Behaviour Foundation website which has a range of resources and case studies from other parents who have experienced similar situations. Encourage her to contact the local adult social care department and request an assessment for your brother so that his communication needs can be looked at long-term. This might be by a speech and language therapist or psychologist.

If you feel your mum won’t contact adult social care, you need to report this yourself urgently so that she can receive more support with the situation. Find out how to do this here.

It’s important to understand the reasons behind the behaviour for change to take place. Gaining a Functional Assessment for your sister, led by a trained professional working in partnership with family members, is a vital step. A change in behaviour (such as the onset of smearing faeces) may be reflecting a change in a person’s world, for example:

• Physical pain or discomfort
• Mental health or emotional difficulties
• Frustration or confusion around a change of environment or staff
• Distress or boredom in particular situations
• Exposure to difficult life events including abuse

In the short term, start by keeping a record of when and where your sister does this, and when it started as this may help identify patterns and recent changes in her life. Ensure that physical causes (e.g. constipation) are ruled out by arranging a GP visit for your sister. Your sister’s GP, or local adult social care department can then refer her for a Functional Assessment of her needs. Findings from the Functional Assessment can be used to help determine the best way to support your sister, to make her life better and reduce the likelihood of behaviours that challenge. This approach is called Positive Behavioural Support (PBS).

Find out more:

• Challenging Behaviour Foundation
  

It’s great to hear that you and your sister have such a positive relationship. The fact that her behaviour is less challenging when she is with you suggests that you are able to communicate well and that you’re meeting her needs. This is a valuable skill to have developed and honed. Don’t underestimate the significance of this achievement for both you and your sister.

If you’re feeling under strain, it suggests that the amount of time you are spending with your sister is not sustainable. This isn’t a good plan for you or your sister. If the strain were to develop into mental health conditions, such as depression or anxiety, you may no longer be able to provide that support at all. It’s important that you don’t accept depression and/or anxiety as a normal part of caring, but as health conditions that can be treated and supported.

Just because you are the person who communicates most effectively with your sister doesn’t mean you’re the person who is entirely responsible for her care. It is important to remind yourself of this when feelings of guilt arise.

Here are some actions you can try:

• Share the communication techniques you are using that are improving your sister’s behaviour with others involved in her care. Arrange a time to discuss this with all involved and teach them what you know. Allow them to practice these without you present. It may take time for all to adjust.
• Think about what time you do want to spend with your sister. What would be sustainable for you? For example, meeting every other Saturday rather than every week.
• Meet with your parents and sister to discuss this. Stress the importance of the need for a sustainable plan and how you will all benefit from this. Discuss options for how your sister can spend her new free time without you. Write the plan down and put it somewhere the whole family can see and refer to. If possible, use a format that your sister will understand too.
• Remind your family of the written plan that they can see and refer to. Changing a family set up like this takes time and it takes courage. It can be difficult for all involved to adjust. It is fairly inevitable that at some point, your parents or other family members may ask you to revert to the previous pattern. When this happens, remind yourself that the previous pattern was unsustainable and that you need to give the new one a try.
• Review the plan. If you, your parents or your sister find that the new plan is not working, arrange a time and a date to meet and discuss it. Doing this – rather than responding on the spot – gives you time to think about what you need and come to the meeting holding that in mind

You matter and you deserve to have your own life too.

The secure unit should be a temporary situation and should not be used as a long-term placement. If your concerns about how your brother is being treated are to do with the use of restraint or isolation, then you can question this. Ask to see the policy on restraint and seclusion and ask how your brother, you and your family will be included in the decisions around what methods are used to respond to behaviours that challenge.

As soon as your brother is admitted, a person-centred assessment and treatment plan should be started along with a Functional Assessment by trained professionals working in partnership with your family. This should involve your brother, you and your family and should have clear aims and actions. These assessments should be used to create a Positive Behaviour Support Plan – this is a proactive and preventative approach to addressing the behaviours that are challenging.

Staying informed is important – it reduces your anxiety and empowers you to ask further questions.

Find out more:

• “My family member has been sent to an inpatient unit – what do I need to know?” A guide jointly produced by Mencap, The Challenging Behaviour Foundation and Respond
  

Your stepbrother may be struggling to have certain needs met and is attempting to communicate those needs through his behaviour. Your sister is a child and should not be left to deal with this alone. This is a safeguarding issue for both of them.

Talk to your mum first and highlight the vulnerable position that your sister and stepbrother are in. Encourage her to contact the local adult social care department and request a trained support worker to stay with him when she needs to go out. Request an assessment for your stepbrother, so that his communication needs can be looked at long-term; a psychologist or a specially trained learning disability nurse should carry this out.

A social worker in children’s services needs to be aware of the danger your sister is in and her involvement as a young carer. A social worker in adult services also needs to be made aware of your stepbrother’s needs. If you feel your mum won’t contact social care, you need to report this yourself urgently so that they can receive further support with the situation. Find out how to do this here.

Many siblings have experienced the same – you are not alone. Children aren’t equipped to deal with these significant challenges at such an early stage in life and it can have a lasting effect into adulthood.

It’s important to:

1. Acknowledge that it may have affected you. Many siblings do not acknowledge this because they feel, or they were told, that their brother or sister “can’t help it”. Regardless of the cause, their behaviour still has an impact on you. Acknowledging that impact doesn’t mean that you’re blaming your sister in any way.

2. Acknowledge how it affected you. It may have been physical, psychological, emotional, social, and financial or a combination of these. You may have had limited opportunities as a child or been excluded from events as a family. Everyone’s situation will vary and it’s important to recognise the ways in which you were affected.

3. Seek support. Find a way to process your experiences in a way that works for you. This might be writing about them privately, or it might be sharing them with others at a sibling support group. Many siblings find counselling helpful.
   

You can use something called ‘remote access’ or ‘remote support’. This allows you to see your sister’s screen from your screen (but does involve you logging in and her allowing this). It can usually be used across smart phones, tablets and computers. Search ‘remote access’ plus the type of device on google to find out more. It may take some experimentation to see what works, but once you both get the hang of setting it up, it could be very helpful when you’re sorting out tech issues remotely.

Tech expert Ray Weaver explains and compares useful accessibility features including quick edits that make screens less confusing, voice tools for blind and partially sighted users, tricks to adjust the touch sensitivity of a screen, live captioning features for hard of hearing and d/Deaf users and much more.

Book Creator is an app that lets you make an interactive book, with colours, text and images. You can add your own videos, sound effects, speech, songs, noises or web links. It’s colourful and uncomplicated to use. You don’t have to create a whole book (but you can if you like!). You can make a couple of quick pages to let your sister know about your week. It’s like an interactive letter. Find out more in this video from tech expert Ray Weaver.

Many other parents and siblings will be wondering the same – you’re not alone. How do you prepare for the future and what would  a successful future look like for you all? It can feel overwhelming at times as there can be a lot to think about – health, finances, care, housing and more. As parents and siblings, we want our relatives to have a safe and happy life.

Here’s our advice:

1. Start small. It’s normal to want to delay planning for the future because there’s just too much to think about. Start small and take it a piece at a time. Be led by your son.
2. Use a planning guide such as Thinking Ahead: A planning guide for families. It’s free to download and there’s a re-writable version for you, your son and daughter to make notes on together. What would you like for the future? What would your son and daughter like to happen and do they agree?
3. It will take time. It’s normal for conversations between parents and siblings to take place over a period of time which will vary from family to family – it will take time and won’t all be resolved in one go.
4. Get more information about wills, trusts and planning for the future at one of Mencap’s online seminars here
5. Tell your son about Sibs. There are 1.7 million adult siblings of someone with a lifelong disability in the UK – your son is not alone! We have a range of support for adult siblings at different points in their sibling journeys including support groups, guides, an ebook and events.
6. Remember that you can consider a range of options for your daughter’s future including the type of care, support and housing that she might want and which also might be suitable for her.
7. There are lots of options for different types of sibling relationships. And there is no right or wrong. Siblings have no legal obligation to provide care for their disabled brother or sister when a parent dies – they don’t become ‘next of kin’ in the eyes of the law. Some siblings may help with care tasks, some prefer not to and there’s a whole spectrum of relationships between. It’s about what works best for both the sibling and their disabled brother or sister.
8. Remember that you’re not alone. Reach out to other parents (on mencap’s forum, at your local carers centre, on facebook groups) and share your thoughts and questions. What are their experiences of planning for the future? It can help to meet others who understand your perspective as a parent.