For some disabled people, social care is not simply help with household tasks. It can be the practical support that makes education, employment, relationships and participation in community life possible.
Letters from families describe what can happen when that support is well matched to a person’s choices—and what can happen when it is fragmented, under-resourced or difficult to navigate.
Support that makes a life possible
Chris Ball says his disabled daughter moved from a specialist residential further-education setting into adult social services 17 years ago. He describes her as quadriplegic, without speech and dependent on personal assistants for the necessities of life. Her 24-hour care is supported financially by her local council, he says.
Ball also describes a life extending well beyond care needs. His daughter has taken part in wheelchair dancing, secured what he calls a “proper job” with Entelechy Arts, painted and maintained social relationships that have included overseas travel. In a book published by Lewisham Adult Learning, How I Flourished, she is quoted as saying: “I love my life.”
Her parents have remained closely involved in managing her care and safety and in helping her pursue opportunities. Ball’s concern is what will happen when they are no longer able to do that. He fears that, without close relatives or friends nearby, the life she has built could be lost through inadequate adult social care institutions. That is a fear about the future, not a confirmed outcome.
Why personalisation matters
Dr Louise Lawson says working-age disabled adults face a crisis in the social care system. She says hundreds of thousands of disabled adults and children rely on support throughout their lives to participate in communities, sustain relationships, access education and employment, and live as they want.
That support can take different forms, including home care workers, personal assistants, supported-living facilities, unpaid family carers and community organisations. Lawson says social care can give disabled people greater choice and control over how support is organised and delivered.
Personal assistants, she explains, work directly with disabled people and can support daily life in ways and at times that fit their choices and lifestyles. Personal assistance will not suit everyone, she says, but remains largely absent from public debate.
Lawson says disabled people’s organisations are calling for a national independent living service to be central to reform. She argues that reform should recognise varied support needs and aspirations, rather than treating social care as a service for one group delivered in one standard way.
The consequences of gaps after school
Another parent describes their 35-year-old son’s move from good support at school into what they call a “terrifying cliff edge”. Their account covers 15 years of adult social care, including unfulfilled promises from social services, staff changes and community health workers who left after a few months.
The parent says the family had lasting power of attorney but felt humoured and ignored while their anxious son declined treatment because he wanted everyone to leave him alone. They say his worsening anxiety eventually led to a psychotic episode.
According to the account, he was then sectioned under the Mental Health Act, saw a clinical psychiatrist for the first time, received medication and was given a place in supported living. The service has very limited resources and houses residents with different mental health needs, the parent says, leaving their son without a connection to them.
The family says they had to initiate and organise six-monthly GP reviews and arrange a review with a community health psychiatrist after four years. Their question is one shared by many families carrying long-term responsibility for navigating services: what will happen when parents can no longer advocate for their adult child?
Planning beyond family advocacy
These accounts point to a central challenge in adult social care. Families may provide knowledge, persistence and day-to-day oversight, but a person’s access to a meaningful life cannot depend indefinitely on relatives being available to coordinate every part of support.
Reliable services need to account for more than immediate safety. They also need to reflect people’s relationships, ambitions, communication needs and preferred routines. For some, that may mean personal assistance; for others, it may involve supported living, community organisations, home care or unpaid family support.
The experiences described in these letters are personal accounts rather than a complete picture of adult social care. They nevertheless highlight why future reform is being framed not only around the provision of care, but around choice, continuity and the ability to live a life directed by the disabled person.
AI tools were used to assist with the preparation of this article.
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