Call for protest over fears of eroded SEND rights
Plans were being drafted, as Community Living went to press, for a national protest to uphold the legal rights of children and young people with special educational needs and disabilities.
A coalition led by the campaign Save Our Children’s Rights said it was organising a demonstration following the schools white paper.
Many fear the plans will weaken long-standing protections relied upon by families; one example is the potential shift from support based on an individual child’s assessed needs to standardised specialist provision packages.
There are also concerns that legally enforceable provision in education, health and care plans (EHCPs) could be replaced with less legally binding individual support plans.
Other worries include higher thresholds for EHCP assessments, reduced rights to appeal review decisions, limits on requesting specific school placements and weaker protections for children in alternative education or post-16 training settings.
Exhibition shows life at first hand
The Our Life Stories exhibition, supported by United Response, has showcased first-hand experiences around England from more than 80 people with learning disabilities.
The display, which visited York, Nottingham, Cornwall and London, disclosed everyday life, achievements and interests through interviews and personal objects.
Detention in Wales hospitals is a ‘scandal’
Better community support, stronger legal safeguards and an end to unnecessary hospitalisation are key to ending a “human rights scandal” in Wales, according to a recent report.
From Hospitals to Homes, a report from the Stolen Lives campaign group and the Learning Disability Ministerial Advisory Group, lays bare concerns about detaining people in the region’s learning disability inpatient services.
As campaigners in Wales have warned (These Hospitals are not Nice Places, summer 2024) people with learning disabilities and autistic people – including children – are detained in hospitals without clear medical justification because adequate community support is lacking.
Families have reported restrictive practices such as physical restraint, medication and solitary confinement.
The report calls for reform.
Theatre is a place for welcome and influence
Live theatre can challenge perceptions and create meaningful experiences for audiences with support needs, according to an exploration by Manchester Metropolitan University of the play Laughing Boy.
Laughing Boy tells the story of 18-year-old Connor Sparrowhawk and the campaign for justice following his death in 2013.
Sparrowhawk, who was autistic and had a learning disability and epilepsy, was known as Laughing Boy. He drowned in the bath in a short-term assessment and treatment unit run by Southern Health NHS trust.
Researchers held a workshop with a self-advocacy group and interviewed six cast members who performed in the play in London (Laughing Boy: Story on Stage, spring 2024).
Small, thoughtful adjustments, they concluded, can make theatre more inclusive and live performance can create meaningful experiences for audiences with support needs. Adjustments included running two relaxed performances each week and accessible information on how to reach the theatre.
News briefs
Access to work bids rise
Applications to the Access to Work scheme have more than doubled in seven years, according to a National Audit Office (NAO) report, from 76,100 in 2018‑19 to 157,000 in 2024‑25. This was driven largely by more recognition of support needs. In 2024‑25, the average processing time was 66 days. The NAO urged the Department for Work and Pensions to embed evaluation in it to assess its effectiveness and value for money.
Carers lack respite
The final report from the Tired of Spinning Plates project, which aimed to understand and improve the mental health experiences of carers of adults with learning disabilities, highlighted how carers value those they care for but lack adequate respite. Services that should help often add pressure, the report said, and carers worry about the future and struggle to find time for their own wellbeing.
Verbal therapy unsuitable
Standard mental health programmes often fail autistic children, research from the University of York and the Centre for Mental Health has found. Interventions such as cognitive behaviour therapy and mindfulness, which rely on verbal reflection, can be stressful or cause sensory overload. Some children hide distress, risking burnout and limiting the benefits.
Freedom of the city
Dan J Harris, Neurodiversity in Business founder, has been awarded Freedom of the City of London. Harris works with his son Joshie, a non-speaking autistic advocate known as The Joshie-Man, to push for dignity, inclusion and representation.
All Update stories are by Saba Salman unless otherwise stated
What’s on our radar…
Fair pay plans are inadequate and social care is ‘cobbled together’. Saba Salman reports
The government’s proposed Fair Pay Agreement (FPA) is “unworkable” without full funding and the involvement of councils, according to the Local Government Association. The FPA in adult social care would set legally enforceable minimum pay and working conditions for all care staff, rather than leaving pay and terms decisions to employers or councils. Councils spent £26.7 billion on adult social care in 2025-26 (40% of budgets) and critics fear the government’s £500 million FPA allocation for 2028 would barely cover 1.6m workers.
Baroness Casey, chair of the social care commission, has described the system as “cobbled together” and lacking ownership and accountability. In a speech, she highlighted that 16.1m people describe themselves as disabled and older populations are growing faster than the workforce. She also called for a national care service to ensure consistency and quality. Her commission plans to release medium-term reforms this year and long-term proposals by 2028.
Public and political engagement in change in social care is weak, according to a King’s Fund report. This noted that such reforms have become an electoral “taboo” since the 2017 “dementia tax” row, leaving politicians and policymakers wary of proposing changes. Politicians and the public need to be convinced that social care is a national priority; it lags behind immigration, the economy and the NHS as a priority for the public. The report reflects how care reform requires not just funding and structural changes but also cultural shifts to bridge the divide between health and social care and improve pay and working conditions.
