Charity highlights role of siblings in supporting adults with a disability
Summary: Campaigners say the support needs and caring role of about 1.7 million adults in the UK who have grown up with a disabled brother or sister are overlooked.
Sibs, the UK’s only charity for siblings of children and adults with a lifelong learning disability, is demanding greater recognition for this comparatively invisible group.It says care professionals often overlook the role of adult siblings whom it believes should have a nationwide peer support network.
The focus is timely, says Sibs chief executive Monica McCaffrey: “We’re very concerned about the next raft of welfare cuts, people who don’t have critical or substantial need will have little or no support … siblings will have to ensure people are safe and we want them to have a voice within adult social care.”
With Carers Week next week and amid growing calls for families to be fully involved in the care of disabled relatives (as reflected, for example, in the campaigning LB bill and proposals published under the last government), siblings play a distinct role. Yet care providers and commissioners, adds McCaffrey, underestimate their contribution.
She speaks from experience; her brother, now 44 and in residential care, has Down’s syndrome and autism. She founded Sibs after running parent groups for disability charity Contact a Family. “I know all about the concern for the future,” she explains, “issues like who’s going to look after my brother when I can’t and having a family of my own and supporting them as well.”
McCaffrey says: “There’s poor engagement from service providers ... the relationship isn’t understood and siblings’ lifelong knowledge is undervalued.” Sibs is encouraging providers to focus on young siblings, raising the likelihood of them remaining on professional radars into adulthood. Annually, it trains around 100 family support professionals to focus on siblings, from social workers to charity staff.
While there is some recognition of the challenges faced by younger siblings (Sibs has a dedicated website for children), the charity is developing adult sibling support groups. It supports one group in London and this autumn will train people in 10 UK cities to run more face-to-face peer support groups.
McCaffrey says parent carers are generally more aware of their rights but when an adult sibling assumes a caring role from an ageing or ill parent, there is a steep learning curve. Other challenges include providing advocacy and care for brothers and sisters while also working and juggling care for elderly parents and their own children. They are vulnerable to isolation and anxiety, according to Sibs, and reticent about sharing worries as a result of “having to put own needs second throughout growing up”.
The charity, launched in 2001, reaches around 16,000 people a year, for example, through telephone support or via its online forum. It offers practical advice on issues like care planning and benefits. With an annual income of around £100,000, it has three full-time staff and is funded by charitable donations and grants.
Sibs has been invaluable for Anila Jolly. She contacted Sibs in 2013 when her mother became ill and she wanted information about getting more actively involved in the care of her brother Sunil. Sunil, 51, has Down’s syndrome and lives in residential care near his sister. Along with their father, a widower in his 80s, the 49-year-old is fully involved in her brother’s care planning.
Jolly says: “We’ve always been close and I have a protective, maternal role towards Sunil, but my contact with Sibs was prompted by the fact my mother became very ill. Finding Sibs was incredible as I realised I wasn’t alone, others had the same concerns and challenges. I found it very reassuring – it was like coming home.”
Jolly began posting and commenting on the Sibs’ online forum and had direct contact from a staff member about assuming more responsibility for her brother’s care. She explains: “Sibs has helped me greatly – both emotionally and practically – and has pointed me in the right directions for further information where necessary. This has meant I can look at issues to do with my brother’s care in more depth, and be as informed as possible before discussing matters with the relevant people, like his care manager.”
Jolly adds that the charity helped her understand things like mental capacity, guardianship and appointeeship, end-of-life planning and ethical issues around the subject. She adds: “Sibs also advised on how best to approach the care manager and ensure I’m fully involved in Sunil’s care planning, including tough questions like resuscitation.”
McCaffrey argues that care commissioners are short-sighted if they fail to involve siblings who want to participate in an individual’s support: “If commissioners’ focus is on good social care and health outcomes, then the involvement of siblings massively improves that … people fare better when family is involved.”
Anila Jolly agrees: “I think siblings are largely invisible to service providers because of a lack of understanding and awareness about our role compared to that of a parent. But often our views can be more objective than those of our parents, and we have a huge amount of knowledge about our sibling that can and should be incorporated into their care and support. Our insight and perspective can be valuable to care managers.”
Source The Guardian
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