With a new government comes the promise of change and in the field of learning disability and autism, change is very much needed. In just two weeks, the new Labour government has hit the ground running claiming that ‘the hard work starts now’.
The King’s Speech yesterday gave us the first chance to look at what reforms the Government will initially focus on and there was much in there to celebrate, including legislation to modernise the Mental Health Act so it is fit for the twenty first century. There was also a commitment to establish a Fair Pay Agreement in the adult social care sector, a Children’s Wellbeing Bill and new employment measures that make flexible working the default from day-one for all workers.
But what are the other key issues that need addressing urgently?
This was a big one. There are still more than 2,000 autistic people and people with learning disabilities stuck in mental health hospitals, and the announcement of a new Mental Health Bill is an important step towards ending this human rights scandal.
Charities have long campaigned to change the law so learning disability and autism is no longer defined as a ‘mental disorder’.
Labour said it’s Mental Health Bill will deliver on their manifesto commitment to modernise the Mental Health Act 1983 which is woefully out of date. It aims to limit the extent to which people with a learning disability and/or autistic people can be detained and treated under the Mental Health Act and supporting such individuals to live fulfilling lives in their community.
It will do this by introducing duties on commissioners to improve understanding of the risk of crisis amongst people with a learning disability and/or autistic people in their local area and also ensure an adequate supply of community services to prevent inappropriate detentions.
The National Autistic Society welcomed the news, but it urged the Government to strengthen the bill before it is passed into law to make sure we have better mental health and social services in the community, to prevent autistic people from reaching crisis point in the first place.
There is much work to be done with housing as our latest InFocus issue shows. One of the reasons why so many autistic people and people with a learning disability end up in Assessment and Treatment Units (ATUs) is because of a lack of suitable supportive housing in the community.
ATUs were designed to be short-term placements used as a last resort when a family hits a crisis or community services break down and cannot meet a person’s needs. However, the reality is that many patients end up detained under the Mental Health Act with the average length of stay often upwards of five years.
Supported housing is defined as a housing service where housing, support and/or care services are provided to help people to live as independently as possible. Recent research by the Learning Disability and Autism Housing Network and Housing LIN shows there will be a shortfall of approximately 30,000 by 2037. It recommends that the Government, local authorities and housing providers should collaboratively plan for further development of supported housing to meet the different needs of people with learning disabilities and autistic people.
One of the key objectives of Mencap’s new chief executive, John Sparkes, is access to employment. In a recent interview, he said that employers need to start embracing the skills and knowledge that people with a learning disability bring and provide inclusive employment opportunities.
The employment gap for people with a learning disability and autistic people is wider than for other disabilities. In 2022–23, just 30.8% of people with “severe or specific learning difficulties” and 30.6% of autistic people were employed. When looking at people accessing long term social care, only 5% of people with a learning disability were in paid work.
A recent report from the Women and Equalities Commission made a number of recommendations for the Government including a new disability employment goal with a specific target for people with a learning disability and autistic people.
It also recommended improving schemes like Disability Confident and Access to Work so they review the extent to which those policies are helping employers to recruit and support people with a learning disability and autistic people. All Jobcentre work coaches should also be trained in learning disability so they can effectively refer people to suitable employment support programmes.
A Children’s Wellbeing Bill was announced in the King’s Speech “which will put children and their wellbeing at the centre of the education and children’s social care systems, and make changes so they are safe, healthy, happy and treated fairly”.
The Government said that the Bill will remove barriers to opportunity and raise school standards to ensure the school system is fair for every child, no matter their background and deliver their manifesto commitments on children’s social care to ensure that all children can thrive in safe, loving homes.
It added that all schools will have to cooperate with the local authority on school admissions, SEND inclusion, and place planning. But what does this mean for children with autism, global development delay and learning disabilities?
According to Tania Tirraoro from Special Needs Jungle, SEND inclusion almost seems to have been stuck in there for lack of anywhere else to add it.
She said: “In this context, it’s presumably included as an intention to stop a school telling parents it can’t support their child and they’re better off up the road at another school. But ensuring children with SEND are “allowed” in to their local school is a tiny fraction of what inclusion is – and far from the most important. Simply forcing schools to shoehorn children into a potentially unsuitable mainstream place, without the resources or SEND-trained staff to support them, is putting a sticking plaster over a gaping wound; it’s not enough and it won’t hold.”
Special Needs Jungle recently sent a 7-point open letter to Bridget Phillipson, the new Secretary of State for Education, which included recommendations for more funding, a national recruitment drive to boost the SEND workforce, valuing the voice of parents and children, and protecting children and young people’s legal right to an education that meets their needs.
It is common knowledge that people with a learning disability and autistic people face significant health inequalities, leading to lower life expectancy and more avoidable deaths than the general population. The latest Learning Disability Mortality Review (LeDeR), published in November 2023, found the median age of death was 62.9 years for people with a learning disability and 55 years for autistic people with a learning disability. This is compared to 86.1 years for females and 82.6 years for males in the general population.
It also revealed that 42% of deaths of people with a learning disability (including autistic people with a learning disability) were avoidable, compared to 22% of the general population. The common causes of avoidable deaths were linked to cardiovascular conditions, respiratory infections and cancers.
Factors that contribute to poor healthcare are delays in diagnosis, a lack of reasonable adjustments, patients not identified as having a learning disability and the misapplication of Do not attempt cardiopulmonary resuscitation (DNACPR) orders as well as diagnostic overshadowing.
Learning disability nurses play a key role in reducing health inequalities, but there there has been a 40% drop in the number of registered learning disability nurses in NHS posts from 5,368 in 2010 to 3,095 in 2024.
Recent research suggested that there needs to be clarity within the health and social care system on who would benefit from the input of a learning disability nurse. There also needs to be a positive and high-profile marketing campaign to encourage more people to qualify as learning disability nurses as well as adequate funding for learning disability services provided in social care, and more funding for the education and training of learning disability specialist nurses.
The Royal College of Nursing is also calling for a dedicated learning disabilities minister or commissioner in each of the four nations to protect the care and rights of patients with learning disabilities and accurate data about the learning disabilities nursing workforce to aid recruitment and retention.
Research published last year found that people with a learning disability from ethnic minority backgrounds die at an average age of just 34, compared to an average age of 62 for white people with learning disabilities.
The report titled We deserve better: Ethnic minorities with a learning disability and access to healthcare, reviewed the barriers to healthcare faced by people with a learning disability from ethnic minority backgrounds. It found that significantly shorter life expectancy is triggered by poorer healthcare access, language barriers, cultural and religious insensitivity, and a lack of information during transitional care in hospital and home.
The authors urgently called for new research which explores what is driving the lower age at death in ethnic minorities with a learning disability, including avoidable causes of death and modifiable contributory factors.
It also wants healthcare providers to do more to actually implement existing policies relating to people with a learning disability. It said: “Coproduction is one of the best ways of helping to address health inequalities. We need to hear patient voices more and act on any disparity.”
As the new report from the Association of Directors of Adult Social Services (ADASS) shows, social care is at crisis point. It found that adult social care budgets in 2023/24 were overspent by £586 million, the highest levels for at least a decade. Directors are not confident their financial situation will improve, with nine in 10 saying they are unsure whether budgets will allow them to meet their statutory duties for 2024/25. In addition, adult social care staff are being increasingly forced to undertake tasks that were previously delivered by NHS workers, without the necessary training, supervision or funding.
ADASS is calling on the Government to invest more in more social care, support unpaid carers, and provide better healthcare in local communities to prevent avoidable hospital admissions.
Mencap also said that the knock-on effect for people with a learning disability is huge as social care acts as a lifeline to leading happy healthy lives and people are missing out on vital care that enables them to integrate into their community. It added that without immediate funding, it fears that the needs of people with a learning disability will continue to be unmet and invaluable dedicated staff will continue to leave the sector.
Although carers were mentioned significantly in the Liberal Democrat manifesto in the lead up to the election, Labour was more reticent about its plans. There was nothing specifically about carers in the King’s Speech and no mention of the manifesto commitment to build a National Care Service.
It comes as a new study from the University of Birmingham found one in four parent carers who have a child with a long-term illness or disability have thought about suicide, while one in 12 have made a plan to take their own lives.
Carers’ charities did, however, welcome provisions around flexible working in the Employment Rights Bill.
Carers Trust’s CEO, Kirsty McHugh said that with its legislative programme set, the Government must now outline urgently needed plans to improve the lives of the UK’s seven million carers. As part of its commitment to enhancing employment rights, carers’ leave must be doubled to 10 days and paid. Another powerful way to show carers are a priority would be to introduce a UK-wide, funded carers strategy.
Emily Holzhausen, Director of Policy and Public Affairs at Carers UK also said that while focusing on the legislative programme for the coming Parliamentary session, it needs to see the Government use secondary legislation to raise the earnings limit for Carer’s Allowance, to peg it to the National Living Wage. This would mean that unpaid carers would benefit from pay rises, rather than being penalised by them.
She added that unpaid is caring tough and millions of carers are stretched both financially and emotionally. “We know that 71% of unpaid carers are worried about whether they can manage in the future, and 23% are in debt because of caring. As our population ages, it is vital that this Government prioritises the needs of millions of unpaid carers across the UK who already go above and beyond.”
The new Prime Minster Keir Starmer said that rebuilding our country will not happen overnight. The challenges faced require determined, patient work and serious solutions, rather than the temptation of the easy answer. Yet some of the issues highlighted above require attention NOW as for some they are life and death situations.
He also said that this is an agenda focused entirely on delivering security, opportunity, prosperity and
justice for every person across the country. For too long, people with a learning disability and autistic people have been neglected by successive governments. It’s time to end the raft of broken promises and see some real action that improves lives for the better.
All of these issues will be discussed at our forthcoming one-day conference in association with Kingston University. To help shape future campaigns and address the action that is needed going forward, sign up here to secure your place.
