Disability Rights UK Newsletter

1.6 million Disabled people have complex needs – new report

Over one in ten Disabled people in the UK has complex disabilities according to new research published by the national disability charity, Sense, which shows for the first time the scale of disabilities in the country.

The research, developed in partnership with the National Centre for Social Research (NatCen), shows that of the 14.1 million Disabled people living in the UK, 1.6 million people have complex disabilities. This figure is expected to grow to two million by the end of the decade.

Complex disabilities – or complex needs – commonly describe a person living with two or more disabilities who may require high levels of support. These needs may be from birth, or following illness or injury, or they may develop with age. The individual may need support from a range of health and social care services.

This is the first time an estimate, with regional breakdowns, down to local authority and constituency level, has been made on the number of children and adults with complex disabilities. Research in this area has been limited, and the lack of robust and accurate data has meant that local authorities and the NHS have not been able to adequately plan and commission services.

Sense says that the failure to recognise the inter-connected nature of people’s needs has resulted in gaps in service provision. Where someone’s needs are not understood, complex needs can result in challenging behaviour, resulting in services that are not delivered in a way that meets that person’s needs.

DR UK’s Head of Policy Fazilet Hadi said: “We support Sense’s goal to see a systematic approach to transform the care and support for people with complex disabilities. Disabled people deserve better support so that we can live full, independent lives.”

Disability Poverty Campaign Group meets MPs to discuss cost of living

This week the DPCG (Disability Poverty Campaign Group, headed by DR UK and Inclusion London) met with MPs and journalists at Parliament for a debate on the cost of living crisis. The afternoon was hosted by the Food Foundation along with the National Energy Action group.

Anna Taylor from the Food Foundation, Adam Scorer from National Energy Action and Dan White from DR UK led the discussion on food poverty and fuel price rises, and their impacts on poorer households, older people and Disabled people before a question and answer session with MPs.

DR UK’s Dan White said: “With this week’s predictions that energy bills will rise by a further £800 this October, it is imperative that the government acts now to provide a financial cushion for those who are being hit hardest.”

If you are a representative of a local or national Disabled People’s Group (DPO) or a disability ally charity and are interested in getting involved with the DPCG email dan.white@disabilityrightsuk.org.

CAMHS in crisis – a psychiatrist’s view

The number of children waiting for CAMHS (children and adolescent mental health services) support has hit a record high of 420,314.

Dr Lubna Karim, a child and adolescent psychiatrist, has told the Guardian that the situation for British young people reminds her of when she worked in a Romanian orphanage 25 years ago.

She said that after “15 years working in the NHS alongside extremely dedicated and committed colleagues, I made the difficult decision to resign because I could no longer be part of a system which is clearly broken, and no longer able to provide the early intervention that is so vital in so many cases”. She says that the overstretched system has now ground to a halt because of the pandemic and its after effects.

Waiting times have increased from one to three years. Severely anorexic and suicidal children are being told they don’t meet the thresholds to be seen. She also says that the situation is similar for families seeking neurodiversity diagnoses, such as autism and ADHD. “Many of them were not considered “high risk” and therefore not prioritised. Many girls on the autism spectrum often do not even make it to the assessment stages, because they are being screened out by CAMHS questionnaires that often don’t identify autism among high-functioning girls.”

DR UK’s Head of Policy Fazilet Hadi said: “It is unbelievable that when we saw pictures of children rocking and crying with despair in their cots in Romanian orphanages, a groundswell of support saw supplies and volunteers racing across Europe to help them, but when children in one of the richest nations on the planet are facing the same level of emotional and mental health crises, nobody is choosing to hear the alarm bells to effect change.

“The refusal to admit children into the system gives false impressions about reductions in waiting lists. A lack of treatments, support and diagnoses leads to a compounding of problems for many children with disabilities and mental distress, leading to an increase in anxiety, depression and self harm.

“The system is complicated and exhausting for families to navigate. It feels as if it is designed to set families up to fail to relieve pressure on the system rather than acknowledging that it needs fast, high level investment, and root and branch reform.”

Equal access for all should be at the heart of services, Ombudsman says

Local authorities across England need to ensure Disabled people are at the heart of how their services operate, so nobody in their community is placed at a disadvantage, the Local Government and Social Care Ombudsman has said.

The Ombudsman’s latest report shares the learning from its investigations to help councils, and other local services, meet their legal duties to ensure everyone has an equal opportunity to access their services, whatever their needs.

The Equality Act 2010 requires local services to make sure people with disabilities can access their service as easily as people without disabilities, and quite often this will involve councils making ‘reasonable adjustments’ to enable them to do so.

Reasonable adjustments are those measures people need to enable them to access services. This might involve, for example, providing information in large print for those with visual impairments, providing translation services for people who are deaf or hard of hearing, or allowing people with dyslexia the opportunity to access services over the telephone rather than filling out online forms.

While the adjustments some people need might be obvious, for those with ‘hidden disabilities’ it may not be immediately apparent that they need extra help. So it is vital for local authorities to anticipate people’s needs, as the law requires, and proactively ask sensitive questions about any help people may need.

The majority of the Ombudsman’s investigations into Equality Act duties are about councils, and other local services, failing to deal properly with reasonable adjustments. The report highlights a number of cases where local services have got things wrong, and offers opportunities for others to learn.

Cases in the report include a council failing to make adjustments to the way social workers communicated with a woman with mental health difficulties, not allowing a man with dyslexia the opportunity to challenge a parking fine over the telephone, not providing an advocate for a woman when she told officers she could not attend a meeting because of problems with her medication, and a school that was only accepting written admission appeals for a time.

Michael King, Local Government and Social Care Ombudsman, said: “We know dealing with public services can often be complex, so it is vital local service providers put the needs of people with disabilities at the heart of any decisions about how services are designed and delivered. It is not enough for them to leave this as an add-on or an afterthought – and enabling people with different needs to access their services shouldn’t be seen as an inconvenience.

“If people feel they have not had their reasonable adjustments met, they need to tell their local authority, and then come to us if they do not put things right. The stories in this report show that just one complaint to us has the power to make a huge difference. If we find a council has made a mistake, we can recommend changes that can impact everyone in their area and share that learning for other councils and providers to act on.

“I would urge local authorities to read my report and consider whether any of the services they provide are putting people with disabilities at a disadvantage.”

The Ombudsman’s report identifies a number of positive steps councils can make to improve services, including reviewing staff training needs around the Equality Act 2010, incorporating Equality Act duties in contracts when commissioning services from external suppliers, and retaining alternative contact methods for people with alternative needs when moving services online.

Local councillors and members of scrutiny committees are also provided with a list of questions they can ask their authorities to consider to analyse whether services in their wards meet their legal obligations.