In the UK, roughly 1.5 million people are estimated to have a learning disability, including about 1.3 million in England alone, with around 2.16% of adults and 2.5% of children being affected.
For many of these individuals—especially those with severe learning difficulties or multiple neurodiverse impairments—the supports we assume are in place are in fact either inadequate, inconsistent, or simply inaccessible. Despite the growing rhetoric around inclusivity and accessibility, governments continue to under‑provision in key areas, including social benefit support, social care, respite services, and community building.
According to research, the UK government claimed to spend about £66.3 billion in 2023/24 on health and disability benefits across all ages; this is forecast to increase to about £100.7 billion by 2029/30, a jump of some 56%. Broken down into age demographics, working‑age adults receive about 75% of this funding, while children account for only around 6–7%.
Yet even with this increasing spend, many families caring for someone with profound disability report that existing benefit amounts are insufficient, that eligibility criteria are restrictive, waiting times for psychiatrists, therapists and other professionals are long, and that some supports (notably short breaks, respite services) are underfunded or geographically patchy.
The cost burden on families is not only financial. According to Mencap, around 152,000 people with learning disabilities are at risk of destitution because their benefits are used to meet care charges—councils in recent years have taken nearly £670‑£690 million a year from working‑age disabled adults’ benefits to contribute to the costs of their care.
Meanwhile, unpaid caring is widespread: Census 2021 showed there are 5.8 million unpaid carers in the UK, with 1.7 million of them providing 50 or more hours per week. A recent academic study quantified what is called the “income penalty” for high‑intensity informal carers: those giving the most care experience an average income drop of up to 45% compared to similar people who do not provide that level of care, with monthly losses peaking some £162‑£192 per month after several years of caring.
Beyond the economic stress, many carers—especially of people with severe impairments—report being pushed to or near “breaking point” because of inadequate short‑break (respite) services. According to the Foundation for People with Learning Disabilities, seven out of ten families of those with profound and multiple learning disabilities say they have experienced this kind of crisis in the absence of sufficient short‑breaks. The social isolation and emotional toll is severe, compounded by complexity in navigating services, lack of accessible community support, and the absence of consistent “village‑style” networks or shared community life.
One relatively less documented consequence is increased reliance on screens and Internet use as a coping strategy or default outlet—for both the individual with neurodiverse impairment and their carers. While robust UK data specifically about screen‑addiction in severely learning‑disabled populations is limited, broader studies confirm that children and adolescents who engage in very high daily screen time (4+ hours a day) are significantly more likely to show elevated rates of ADHD, conduct problems, anxiety and depression; physical activity reductions, irregular sleep and bedtime, and shorter sleep duration mediate much of this association. When direct social engagement, community inclusion, and structured support are lacking, the risks these problems pose are magnified for vulnerable neurodiverse individuals.
Despite welfare and benefit spending growing in absolute terms, many families say that policy changes are moving in the wrong direction: reforms to Personal Independence Payment (PIP) are projected to tighten eligibility, which could affect up to 1.2 million people, reducing their support by thousands of pounds annually. At the same time, nearly 100,000 adults in England have reportedly been denied state‑funded social care as local authority budgets have been squeezed, eligibility thresholds raised or service rationed.
These figures demonstrate that although “inclusivity” and “accessibility” are being spoken about far more widely today, in practice for people with severe neurodiversity and profound learning disability—and for the families caring for them—many of the promised structures, supports, and safety nets still fail to meet need. The financial amounts spent do not always translate into meaningful, accessible, or sufficient support, and the human, social, emotional costs on carers and families remain high and often under-measured.
As a disability-led accessibility consultancy, Direct Access conducts comprehensive access audits, offering expert insights and practical solutions to ensure built environments, services, and digital spaces are truly inclusive for people with all types of disabilities including those with severe learning difficulties and neurodiverse impairments. By going beyond regulatory minimums, Direct Access works with local authorities, education providers, public venues, and private organisations to ensure that accessibility is not a tick-box exercise but a meaningful commitment to dignity, autonomy, and social participation. Through consultancy, training, and lived-experience-led approach, we are aiming to reshape environments to be not only physically accessible but also sensory-aware, cognitively accessible, and emotionally supportive. Our work is essential in creating communities where people with complex needs are no longer sidelined, but actively and meaningfully included.
Access audits can spark meaningful change within local communities by revealing where services, programs, and events unintentionally exclude people with learning disabilities. Findings often inspire leisure providers, schools, employers, and cultural venues to redesign activities so they are easier to navigate and participate in—for example, by simplifying booking systems, providing clear information, or offering supported employment pathways. Audits also encourage collaboration between councils, businesses, advocacy groups, and disability organisations, creating stronger networks of accessible services and a more inclusive community culture.
Audit reports provide valuable evidence that can influence central and local government policy, highlighting gaps in funding, respite care, or inclusive education. This information strengthens the case for increased financial assistance such as disability living allowances, carers’ benefits, and grants for accessible housing, transport, and technology. By identifying these needs, audits also help families advocate for tailored care plans and navigate complex bureaucracies with greater confidence, ensuring they receive the financial and emotional support required to improve daily life for their loved ones.
If you are curious in learning more about our consultancy, training, and disability research services (which directly serve vulnerable neurodiverse individuals to improve their independence and quality of life), check out our comprehensive Consultancy page by clicking the button below!