Housing
There’s a few housing options but the most common ones for people with severe learning disabilities are to rent a home from the local authority, share with a few others in supported living or live in a larger care home. Your sibling might live with you/your parent – but there’s no legal obligation for you to do this. The Care Act (2014) states family carers must be ‘willing’ and ‘able’, meaning it’s your choice as a sib how much or how little you’re involved in their care.
Social care
If you sibling isn’t already living somewhere that has 24 hour carers, then support with things like getting washed and dressed, getting meals, doing laundry etc can be arranged by getting a care needs assessment. This is a plan from the local authority that outlines the type of support your sibling needs to live their life. Do they need to pay for this? It will depend on their income. Disabled people without savings and living on benefits alone are unlikely to pay towards their social care, but others who have more money may need to contribute. Is your income counted, as their sib? No. You have no financial obligation to provide for your sibling.
Health care
Doctors appointments are free at point of access, and your sibling might be exempt from prescription charges for any ongoing medication – if not, consider a pre-payment certificate to reduce the cost. They might be able to access free dental care and eye tests (search for optometrists via SeeAbility). If they need hospital treatment or surgery, most of this will be covered by the NHS, unless it’s something cosmetic or a new type of treatment that they’re not funding yet.
Finances
Depending on your sibling’s disability and needs, they could apply for benefits – small amounts of money to cover day-to-day spending. Your sibling can see what they might be eligible for by using an online benefits calculator. If they can’t manage their benefits themselves, you (or another family member, or the local authority) can act as their appointee.
Decision-making
As a sib, can you make decisions on behalf of your learning disabled adult sibling? No, you don’t have an automatic legal right to this, and neither do your parents.
For most day-to-day decisions (like helping them decide what to wear), it’s fine as anyone else involved in their care can see that you’re acting in their best interests (put a coat on, it’s cold).
For more complex financial decisions (like signing a tenancy agreement) or medical decisions (like consenting to surgery), you’d need power of attorney or deputyship. Read more about mental capacity and the Mental Capacity Act 2005 – this is a huge area and could be a whole separate discussion.
Work and leisure
The support your sibling needs during the day should be built into their care needs assessment, as having a social life and accessing the community are part of this. Schemes like Access to Work and other organisations/charities might support them into employment or volunteering, if that’s right for them. Other people might have paid or volunteer support to do things they enjoy (go to the gym, see friends, go to gigs, usual stuff) or go to specialist day centres or social activities run by the local authority or charities.
There are a few things that can help your sibling get around: the Motability scheme and Blue Badge parking; a Disabled Person’s Railcard and schemes like Passenger Assist. Local authorities usually have dial-a-rides and reduced or free bus services. Using toilets out and about? Many accessible toilets here use the radar key scheme, others are open to all. There are also more Changing Places toilets cropping up.
Support for sibling carers
What about you, as their sib? Can you give up work and be paid to care for them? Most sibs will only be able to claim Carer’s Allowance, a small sum each week (and that’s only if another carer, such as a parent, isn’t already claiming it – only one person can apply). You can also have a Carer’s Assessment from the local authority – this looks at your needs, as their carer, not your sibling’s. However, I have heard of some local authorities allowing a sib to be paid an hourly wage as if they were an external carer. This is usually planned as part of their care needs assessment mentioned before, and is only in specific circumstances.
What are your employment rights as a carer? The Carers Leave Act means you can have a weeks’ unpaid leave each year for care related tasks (doesn’t have to be direct care, it can include things like liaising with social workers). Check your employer’s policy though, as they may offer paid leave and may also have carer’s networks you can join. You’re also permitted emergency carers leave, again unpaid, for last-minute situations.
Take a look at charities like Sibs, Carers UK and Carers Trust for more support too.
Frances is an occupational therapist, a writer and a sib living in Nottingham, England. Her brother has a severe learning disability (intellectual disability), epilepsy and is non-verbal and she writes about sib experiences through her blog, Sibhood. Here, Frances shares a quick overview of health and social care in England and the kind of support that might be available to sibs and their learning disabled siblings.
Connect with Frances on Instagram, LinkedIn and via her blog, Sibhood.