The government has been criticised for "lack of action and urgency" in its response to the Health and Social Care Committee report into the treatment of autistic people and people with learning disabilities.
The committee report showed evidence that current levels of provision for community services are totally inadequate and have resulted in autistic people and people with learning disabilities being avoidably admitted to inpatient settings where, too often, they do not receive the support they require and there are no specialists in their condition.
These concerns are held not just by individuals and families but by doctors, local authorities and senior NHS leaders despite successive governments seeking to reduce the number of autistic people and people with learning disabilities in inpatient facilities.
The government response landed this week (Wednesday), which is over a year after the report was published. It was delayed as the government waited to publish its Building the Right Support (BTRS) action plan which was promised over two years ago.
Although government ministers have accepted many recommendations from the Health and Social Care Committee report in principle, there are a number that have not been accepted.
MP Barbara Keeley, who was part of the committee at the time, said that the report called on the government to ban new admissions urgently (as they first promised in 2012) and fund care in the community so that people can live independent and fulfilled lives, but the government has refused to do this.
She added: "This delayed response is disappointing and a kick in the teeth to all the people who contributed to our inquiry and have campaigned for so long. In the response there's a lack of humility or apology for the abject failure to meet targets. By 2019 the care of 35-50% of autistic people and people with learning disabilities should have been transferred from inpatient to community settings.
"As of May 2022 there has been only a 31% reduction in the numbers and the numbers of children and of autistic people in these units have actually increased. Length of stay has also been increasing since 2017."
Assessment and matching of costs
One of the committee's main recommendations was that the Department of Health & Social Care provide a complete assessment of the cost of providing community support for all autistic people and people with learning disabilities currently in inpatient units. Once the costs of moving care and support to the community for these individuals currently detained in inpatient units are identified, it said it expected the government to provide investment which matches these costs, including initial funding for double running if needed.
The government only accepted this in principle as it said there are practical challenges in providing a complete assessment of costs as proposed by the committee. This is because each person’s support can be drawn from multiple funding sources and comprise different services drawn from the NHS and local authorities. Also each person’s support is personalised and typically cannot be compared.
It added that it has commissioned an independent specialist consultancy firm (RedQuadrant) to undertake a rapid review of funding flows associated with Building the Right Support including any financial incentives or disincentives which may exist in the system. This report was published on 14 July 2022 and has received a mixed response from learning disability charities.
The National Autistic Society said although it welcomes the government’s commitment to improve the situation with the Building the Right Support report, it still isn’t enough to stop the scandal of autistic people being wrongfully detained and stuck in mental health hospitals.
It added: "We’ve seen a frustrating lack of progress on this issue for years, alongside a social care system which has long been at breaking point. This combination means too many autistic people don’t get the support they need early on, sending their lives spiralling into crisis and ending in admission to hospital.
"The government must push ahead with reforming mental health law as soon as possible. But legal change alone isn’t enough. Without a fully funded social care system that targets investment at the support autistic really people need, this scandal won’t change. To reach its target to reduce the number of people in hospital, the government needs to do more."
Financial incentives in healthcare system
The committee also recommended that financial incentives were redesigned in the healthcare system so that local authorities do not seek to ‘offload’ autistic people and people with learning disabilities onto the NHS or place these individuals in inpatient facilities.
This recommendation was accepted in full by the government and it agreed there must not be any financial incentives or disincentives which prevent this from happening. It added it was taking action to ensure people receive the right support in the community through the proposed reforms to the Mental Health Act.
Trieste model of care rejected
Another recommendation was that the Trieste model of care be used in the UK, something campaigners have long been calling for. This care system doesn’t use restraint and the average length of stay is just 14 days, a stark difference between the UK model which regularly uses restrictive intervention and has an average length of stay of five and a half years.
The committee added that all new long-term admissions of such people to institutions should be banned except for forensic cases. For cases where there is a severe comorbidity any admission longer than three months should be subject to safeguards.
Although it agreed with this recommendation in principle that admissions into mental health inpatient settings should be for the shortest time possible, the government did not agree that admissions should be banned altogether.
This was because there will be times when people with a learning disability or autistic people with a mental health condition, as with any person with a mental health condition, would benefit from high-quality inpatient care. When this is the case, it said it wanted to ensure that this option is available so that people, and those around them, have safe, therapeutic care that is right for them.
Other recommendations not accepted in full were preventing service commissioners from buying services from settings that rated “inadequate” by the CQC, high quality training delivered to staff by 2023 on understanding the needs of autistic people and people with learning disabilities, and mandating the independent review of the deaths of all autistic people and people with learning disabilities in inpatient and community settings.
The reasons for this were multiple, but essentially it was because the government felt it already had policies/steps in place to address these concerns along with the draft Mental Health Bill.
Health and Social Care Committee Chair Jeremy Hunt said: “We welcome action taken by the government in response to our Committee’s report to improve community support for autistic people and those with a learning disability.
“Ministers accept that there must be credible alternatives to inpatient facilities, allowing people to live independent and fulfilled lives in their community. The government has agreed with us that there are too many instances where restrictive practices such as restraint are used. It has promised action to ensure that care for inpatients is the least restrictive possible.
“We will look to the draft Mental Health Bill to bring about reforms to further protect individuals’ rights and freedoms.”