Politicians should take an approach to health and care that considers the needs of the families of disabled people – but instead seem content to continue the creeping withdrawal of state support from the people who need it most, writes Saba Salman

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The health and care system fails disabled people – this is a widely acknowledged and shameful fact. But the support gaps for family members are an under-reported issue, with siblings’ needs in particular going unmet and their caring role overlooked.

A book published this month offers an honest, powerful insight into the complex experience of growing up with a disabled brother or sister. It is also a rare reflection of the part siblings play in the lives of their relatives.

The memoir brother. do. you. love. me. is written by Manni Coe and illustrated by his younger brother Reuben, who has Down syndrome. It describes how Manni supported Reuben, moving him from a care home as his mental health plummeted during the pandemic.

Ostensibly, the Coes’ story shows how the crisis widened the existing cracks in the care system and charts the struggle of creating an inclusive community for someone othered since birth. It is also an uncompromising description of the burnout often experienced by family carers and the emotional exhaustion of distance caring, “constantly worrying and wondering if he’s been looked after”, as the author writes of Reuben.

Yet, for all the themes the brothers’ story reveals, ultimately it is a book about love, belonging and what helps us thrive.

Like me, the author is among the 1.7 million adult siblings of disabled people in the UK (there are also half a million young siblings). These figures are from the charity Sibs, which I chair in a voluntary capacity, and which supports people who have grown up with disabled brothers or sisters.

As a sibling, so much of the Coes’ book resonates. I recognise the good times and the guilt, the relief and the anger, the reciprocal support and the responsibility. My sister Raana has a learning disability, but she can still guide, comfort and give me an unexpected perspective on life that shapes me personally and professionally.

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The themes in the Coes’ book also resonate because family carers are under more pressure than ever after Chancellor Kwasi Kwarteng’s mini budget failed to include any targeted support for them. Disabled people and family carers are already contending with the enduring impact of the Coronavirus and the cost of living crisis. 

The Government’s refusal to update benefits in line with inflation will have devastating consequences. Unpaid carers – who have less capacity to work and fill the gaps left by the crumbling social care sector – face extra costs like equipment, transport and food. According to a recent Carers UK survey of more than 3,300 people, 45% say they cannot manage monthly expenses and that further increases in energy bills will negatively impact their own physical and mental health or that of the person they care for. 

Despite the crucial care some siblings deliver and their innate knowledge of their brother or sister’s needs, families are often excluded by care professionals. When a disabled person moves into residential care or supported living, as Manni Coe writes, they are “no longer part of all the conversations”. Many families, he explains, struggle with relinquishing their caring responsibilities and stepping back from every day decision-making.

Yet it was over a decade ago, after the Winterbourne View abuse scandal, that the Government promised that families would no longer be sidelined in the care of their loved ones. Ignoring a family’s experience and expertise as caregivers, supporters and advocates is short-sighted, given how these insights could help the creaking system provide better quality support.

The fact that siblings feel overlooked is an issue reflected in forthcoming research from Sibs about its network of 18 adult sibling peer support groups, due to be published later this year. Emerging results from the small but significant poll of 60 siblings so far shows they are isolated, lack information to help them care, and that the charity provides them with unique support. Early indications are that around 85% reported that the group made them feel less isolated as a sibling and almost 80% agreed that they gained support from the group that they would not have otherwise found. 

The data reinforces the case for specialist respite care for siblings. Sibs, funded by the Carers Trust, is running a series of unprecedented respite opportunities for adult siblings who care for their autistic brothers or sisters.

“Our latest research reflects how siblings’ lives are impacted by disability or ill health and how vulnerable they are to isolation and anxiety,” Clare Kassa, Sibs’ chief executive, says. “Siblings are rarely acknowledged by providers, commissioners and professionals yet many siblings are carers and their lives are affected by their experiences.”

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The pandemic, as previous research from Sibs highlights, has had a negative impact on siblings. Younger children were isolated at home, away from support structures, or became young carers for the first time. Parents reported how their sibling child’s mental health had worsened in lockdown. Adult siblings worried when they could not visit their brothers and sisters, or had to provide care and support, often at a cost to their own health and wellbeing. 

For Kassa, ignoring the needs of siblings now simply stores up care and support challenges for the future. For those of us, for example, trying to balance our working lives with being involved in the care of our siblings, children or ageing relatives, this is especially challenging. 

“Siblings of disabled people take on many different roles as they age, from playmate to ally, friend to carer, supporter and advocate,” Kassa notes. “As they get older, they may face the competing demands of supporting their brother or sister plus the pressures of work and care for their own children or elderly parents. This is why we need the Government to take an approach to health and care that considers the whole family.”

Liz Truss’ Government clearly has no intention of reversing the creeping withdrawal of state support from the people who need it most. The reliance on family and unpaid carers to plug the gaps will only increase. But without a more pragmatic, family-led strategy for support, this is unsustainable. Who, essentially, will care for the carers?

“I don’t think that my needs are any more or less significant than Reuben’s,” writes Manni Coe in brother. do. you. love. me.. “Is my happiness less important than Reuben’s? Is his happiness any less important than mine?”

These are questions we need to ask and that deserve to be answered as part of the national conversation about the future of our health and care system.

brother. do. you. love. me. by Manni Coe and Reuben Coe is published by Little Toller Books. Saba Salman is the editor of ‘Made Possible: Stories of Success by People with Learning Disabilities – In their Own Words’. She is chair of the charity Sibs, which supports the siblings of disabled children and adults. Her sister Raana has a learning disability

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