Have you ever been talked over? Or talked about? Treated like you aren’t in the room? Like a case number, not a person?
We spoke to People First, The National Disabled People’s Organisation of adults with a Learning Disability in Scotland, and an anonymous member of theirs who is currently an inpatient in an NHS hospital said:
“NHS care for adults with learning disabilities is at best, sub-par and at worst neglectful. We are seen as “other,” like we are not quite human beings, and this means we are somehow less deserving of the same dignity, respect, and quality of care as everyone else. Having an intellectual impairment does not mean that we are unable to understand our needs, express our wishes or make choices about our care. Everyone has the right to be listened to, valued and supported in ways that allow effective communication and full participation in decisions that directly affect them.
The NHS must invest time, training, resources and funding to fully embrace us, support us appropriately and respect our right to be included and respected. This is our fundamental human right.”
Baroness Casey’s findings
Baroness Louise Casey’s review into adult social care support found the NHS is “unable to sufficiently treat and look after” people with learning disabilities. She told ITV News that some health professionals see caring for them as a “burden.” They “do not see them” and “do not hear them.” She shared an example Inclusion Scotland has long warned about: a 70 year old woman with learning disabilities had a stroke and was placed on a general ward. Staff refused entry to her carers, the only people who could understand and communicate on her behalf. People with learning disabilities die significantly younger than the wider population. This is a stark health inequality, not an inevitable fact of disability1. The NHS is not set up to care for people with learning disabilities2. In module 2 of the UK Covid 19 Inquiry we found that people with learning disabilities were 30 times more likely to die from COVID-19 3.
Yet disabled people are not named as priorities in the population health framework which seeks to reduce health inequalities4 nor as a priority group to improve vaccine equity5. This is important because vaccination is one of the most effective things you can do to protect your health.
Against this backdrop, the Scottish Government has confirmed it will not proceed with the Learning Disabilities, Autism and Neurodivergence (LDAN) Bill – legislation developed over five years with hundreds of disabled people sharing their lived experience and trauma in good faith6 7. The Government says it will pursue “policy reform and targeted investment” instead, but without statutory accountability, disabled people are left at the mercy of whoever holds power . As one advocate put it: “They asked for our trauma. Then they scrapped the Bill.” 8 9
Why This Matters Right Now
We implore the First Minister to listen to our organisations and disabled people when we tell him that making social care support accountable to health will damage the outcomes of those who rely on it most. The First Minister announced this move in the 2026-30 Programme for Government recently shocking us and many others as this approach to reform had never been mentioned until then. Disabled people and our organisations have been actively involved for years in trying to improve healthcare and social care support. We’ve done the work. We’ve shown up. We’ve contributed. No one wants this.
The Programme for Government stated Scottish Government will replace 14 territorial Health Boards with 2 Strategic Health Boards, reducing the number of special health boards, and hold discussions on social care reform within three months with local authorities, trade unions, and health and care providers. Notice who’s missing? Disabled people, our organisations and others with lived experience such as unpaid carers. This is incredibly important given the implementation gap between policy and lived experience. We have robust laws that are designed to outlaw bigotry, stigma and hate in public services. However we are inundated with reports of disabled people being labelled, “too complex for care”, or facing hate crime in hospital or treated like we are actively trying to being difficult due to our impairments, or have assumptions made by healthcare professionals that new symptoms relate to an existing impairment or condition (known as diagnostic overshadowing). We have heard from GPs who have stated that the NHS prefers easy cases, as that is how we bring down waiting lists and meet the NHS’ goals. The NHS would prefer someone with a broken leg over someone with a complex health condition. This frequently puts the burden of care on the person seeking treatment, causing stress, fatigue and systems generated trauma.
What people with Learning Disabilities say:
We asked the DPO, People First, an organisation made up of people with Learning Disabilities what they thought of Baroness Caseys revelations.
This is what members of their parents group said:
‘Services don’t answer to us and aren’t accountable. This makes our mental health worse. Funding for collective advocacy groups and also individual advocacy is being cut at the same time which takes away our voice about the lack of support and barriers we face’
‘We don’t get the health and social care services we need. Often, it is difficult to be referred early to make sure our mental and physical health doesn’t get worse’
‘When it comes to getting your children taken off you, we are told it is because we have a learning disability and so we are therefore not fit to parent. Yet, when we need support ourselves around this or for ourselves, we are told that support isn’t available.’
The Medical Model vs. The Social Model
Here’s what worries Inclusion Scotland the most. If social care support becomes accountable to health, the medical model will drive everything. The medical model says disability is a problem inside the person’s body. It focuses on what’s “wrong” and tries to “fix” people. It doesn’t acknowledge the Social Determinants of Health10 and it is not in line with the United Nations Convention on the Rights of Persons with Disabilities. The problem isn’t our impairments and we can’t necessarily be fixed. It’s inaccessible buildings, attitudes, services and systems that are designed without us. The social model would allow us to have the support we need to make choices, maintain relationships, and be part of our communities AND stay healthy.
These two models lead to completely different outcomes.
A medical model approach would ask: “How do we get this person out of hospital faster?” A social model approach would ask: “What support does this person need to live a good life in the community?”
The latest figures for Scotland show 68 people with learning disabilities and complex needs were delayed in hospital as of December 2025. Of those, 31 had been stuck in hospital for at least ten years. 11 We are happy that the Independent Living Fund, co-designed and coproduced with disabled people and our organisations, is now funded to support these disabled people back into their homes and communities – it cannot come to soon for these individuals and their families, as we know firsthand from talking to and listening to disabled people that when kept in hospital, disabled people are denied freedoms, support, choice and control; with health outcomes likely to worsen.
The Money Problem
Our letter warns that if social care support gets absorbed into health without dedicated and ring-fenced funding, it will always lose out to clinical investment. Hospitals are expensive. Doctors, nurses, equipment and maintaining our crumbling buildings and archaic digital technology costs a lot. If social care support is competing with hospitals and other health services for the same pot of money, who wins? The hospitals. Every time, which would be ironic given the Scottish Government’s new energy for prevention, and wide acknowledgment that unmet social care support needs cause the health service to pay the price and extra workload. A lack of housing adaptations causes more falls. A lack of social care support leads to a lack of independent living. This can even result in disabled parents having social work involvement, not due to any failings as parents but due to a lack of support from social care support.
The Reality on the Wards
This isn’t theoretical. We have been deeply concerned about the deterioration we see in disabled people while we are in hospital, and we believe this often stems from social care support being paused upon admission. All too frequently, this triggers an automatic and unnecessary full care package review, leaving disabled people without the support they rely on.
We understand hospital staff are under immense pressure and simply do not have the time, training, or capacity to provide the level of personal support disabled people need, such as help with eating, drinking, or everyday hygiene tasks. Many disabled people do not have access to specialised equipment while in hospital. It is all too common for disabled people to leave hospital in worse conditions than when they arrived, noticeably thinner, undernourished, and dehydrated, simply because staff do not have the time to provide the level of support we need.
We are keen to find a solution as a priority as the current status quo is deeply illogical and concerning.
What Inclusion Scotland Says
Inclusion Scotland’s Manifesto for Inclusion 2026 called for radical reform of social care support that puts disabled people at the centre and in the lead.
We want:
- Social Care Support eligibility criteria removed so people get the support they need.
- A Right to Needs Satisfaction instead of constantly having to prove you’re “disabled enough”.
- Disabled People’s Organisations and disabled people (with support if required) involved in decision-making at every level.
- Real investment in social care support as an investment in people and communities.
We also want:
- Disabled people to be able to bring whoever they feel is appropriate with them to health care appointments or treatment and for social care support to continue whilst disabled people are accessing health care. Visitation and support guidance must reflect this.
Our CEO, Heather Fisken, said: “Disabled people have been demanding these changes for decades, only to have commitments revoked, policies scrapped or inadequately implemented.”
That’s the pattern. Promises made. Promises broken. Disabled people left waiting.
Why “Nobody Asked For This” Matters
Baroness Casey talked about the NHS seeing people with learning disabilities as a burden, and this is why we are so worried about social care support being accountable to the NHS/ Health. Social care support isn’t about fixing people. It’s about supporting us to live. To have the same choices as non-disabled people. To be part of communities. To have employment, relationships and dignity. Health and Social Care Support need different approaches. Different values. Different ways of seeing people.
When Baroness Casey says health professionals “do not see them” and “do not hear them,” she’s describing a system that has lost sight of the person in front of it.
We can’t let social care support become the same.
What Happens Next
Following a recent meeting with Scottish Government, Inclusion Scotland has written to ask for the chance to discuss NHS hospital visitation guidance and policy. Baroness Casey’s review proves our point, that visitation and support for appointments and health care are essential for disabled people. They allow our social care support to continue in hospital settings that weren’t designed to meet our care needs.
We’ve been asked to advise on visitation guidance later in the year. But these examples show that there is an inescapable urgency to this.
Disabled people have been fighting for decades. We’ve been told to wait. We’ve been told to be patient. We’ve been told that reform is coming.
And meanwhile, people with learning disabilities die 20 years younger. Carers are locked out of hospital wards. Social care support is treated like a drain instead of a basic human right.
Baroness Casey said the system has “a one-track mind.”
She’s right.
It’s time for a different track. One where disabled people are seen, heard and in the lead.
Written by Policy and Research Officer, Maia Pace. If you are a member of Inclusion Scotland and you would like to discuss any of the themes in today’s blog, please email: Research@inclusionscotland.org
Footnotes
[1] Scottish Government, Population Health Framework Equality Impact Assessment, June 2025 — https://www.gov.scot/publications/scotlands-population-health-framework-equality-impact-assessment/pages/5/
[2] Baroness Casey, ITV News (NHS “unable to treat and look after” people with learning disabilities) — https://www.itv.com/news/2026-09-17/casey-nhs-unable-to-treat-and-look-after-people-with-learning-disabilities
[3] Module 2 – UK Covid 19 Inquiry: Modules 2, 2A, 2B, 2C: Core decision-making and political governance – Volume II: Key themes, lessons and recommendations
[4] Public Health Scotland, Population Health Framework, June 2025 – Scotland’s Population Health Framework – gov.scot
[5] Scottish Government, Flu and COVID-19 Vaccination Programme 2023-24 Equality Impact Assessment — https://www.gov.scot/publications/flu-covid-19-vaccination-programme-fvcv-2023-24-equality-impact-assessment/pages/2/
[6] Scottish Daily Express, *”John Swinney breaks yet another SNP promise as disastrous week culminates with dropped bill”*, 4 September 2026. Available at: https://www.scottishdailyexpress.co.uk/news/politics/john-swinney-breaks-yet-another-37628744
[7] The Herald, *”SNP accused of ‘betrayal’ over ditched disabilities law”*, 20 September 2026. Available at: https://www.heraldscotland.com/news/26562118.snp-accused-betrayal-ditched-disabilities-law
[8] Kelly Given, quoted in The Herald, *”They asked for our trauma. Then they scrapped the Bill”*, 20 September 2026. Available at: https://www.heraldscotland.com/news/26562118.snp-accused-betrayal-ditched-disabilities-law/
[9] Scottish Parliament Equalities and Human Rights Committee, *Correspondence: Learning Disabilities, Autism and Neurodivergence Bill*, 1 September 2026. Available at: https://www.parliament.scot/-/media/files/committees/session-7/equalities-and-human-rights-committee/correspondence/2026/learning-disabilities-autism-and-neurodivergence-bill-1-september-2026.pdf
[10] Institute of Health Equity: the-social-determinants-of-health-in-scotland-second-report [1] Coming Home Action Plan, March 2026, Coming Home Action Plan – An action plan to address the outstanding recommendations made in the Coming Home Implementation Report 2022, and outline priorities for future implementation.
[11] Coming Home Action Plan, March 2026, Coming Home Action Plan – An action plan to address the outstanding recommendations made in the Coming Home Implementation Report 2022, and outline priorities for future implementation.