We need to be loud and clear: institutions are not the solution, says Simone Aspis

Current independent living campaigns need to consider refocusing their messages to capture what has become a central issue, the increasing threat of institutionalisation for anyone needing care; we must not only be critical of cuts to services but also the availability of institutionalised services. Guest blog from Simone Aspis.

An old black and white photograph of a group of female nurses in white uniforms, in a communal living area in a mental health institution

Photo: Nurses at Saxondale mental hospital, Nottingham, from the Wellcome Collection image archive

This is a guest blog post by Simone Aspis

Whilst NHS’s statistics show a steady decline of disabled people with Learning difficulties and Autism being detained under the Mental Health Act (MHA) 1983, from 3500 to 2,510 between 2011-2016, the trend is in danger of reversal.

In 2011 young people made up 7.6% of the total of disabled people detained under the MHA but by 2017 this had risen to 13%. Many of these are people with learning difficulties or autism who are admitted for short-stays that then become long-stay placements as a result of Local Authorities and Clinical Commissioning Groups systematic failures of funding local education, health and social care services, which would facilitate disabled individuals’ participation in their local mainstream education provision whilst living with their families. These figures do not include people with Learning difficulties or autism with restrictions placed on their freedoms whilst living in institutionalised psychiatric and social care settings as a result of “deprivation of liberty safeguard orders” (DoLS) issued under the Mental Capacity Act 2005.

Many short-stay placements become long-term ATU placements because of Local Authority and Commissioning Clinical Groups systematic failure of funding well-coordinated mainstream education, health and care services that facilitate disabled young peoples participation in mainstream schools and colleges. Further, disabled young people with Autism /Learning Difficulties are particularly at risk of not getting the support they need as its assumed that parents should continue providing the social care; too often parents do not resist, fearing the alternative, being placed in an institution. It’s only when parents are unable to cope or when there is a breakdown of support within the community that, inadequate, help is provided. By this this stage many people with learning difficulties or autism will have or developed mental health conditions and behavioural traits that would bring them under the Mental Health Act 1983 provisions. Not much more is needed, other than a person with Learning difficulties /autism’s behaviour is of an abnormal aggressive or seriously irresponsible conduct and that she or he is a health and safety risk to oneself or to others, to be sectioned.

So the “help” is often a trip to the ATU when patients are sectioned under the Mental Health Act 1983 where funding of the placement will fall within the NHS England budget, relieving Local Authorities and Clinical Commissioning Groups of their responsibilities around the person’s care and funding of that care. Once detained, patients can spend years and years incarcerated and institutionalised.

For many disabled people with Learning difficulties / autism and their parents, the real threat to independent living is the growing numbers of institutions opening up without any challenge by the independent living movement. However, as long as institutions exist, the state will always find a way of filling up the vacancies. Local Authorities and service providers are left off the hook in providing appropriate support for people with learning difficulties / autism. Break-down in placements happen because care staff do not, cannot or are unwilling to work with people with learning difficulties / autism with challenging behaviour; why take on the risk and responsibility if there are alternatives, specialist hospitals to do the job. ATUs are moving swiftly into filling gaps in housing and community care by providing “supported living” housing provision for former patients.

Disabled people with capacity should not be complacent. Institutionalisation is on the cards for anyone needing state-funded assistance. Just a few weeks ago I heard of two young disabled people with physical impairments and physical health conditions worried about being pushed into a nursing home because CCGs considers continuing care packages unaffordable to fund. And there is another young disabled person desperately wanting to get out of a care home because of their institutionalised practices.

Closure of the ILF and associated negative impact upon disabled people has been the centre theme for Inclusion London’s Independent Living campaign work. However, our struggle for independent living goes much deeper than cuts to social care budgets for individual ILF users.

There is one area of state-funded assistance rolling in cash, the residential special school and assessment and treatment units (ATU); Christine Lenehan reported in her review of residential special schools report of £300, 000 annual fees being paid for individual residential special school placements. The Gov’s open checque book covers adult ATUs. According to Mark Brown the author of Lancaster University Centre for Disability “A Trade in People” research report found that the Government spent £477m last year on incarcerating 2,500 people with learning difficulties and autism in ATUs; in cash terms the state is prepared to pay £190,800 per year or £525 per day for institutionalized care for one individual.

The UN Convention on the Rights of Persons with Disabilities (UNCRPD) Disability Committee review of the United Kingdom’s (UK) progress in implementing the UNCRPD observations and recommendations included the tackling of increased state-sanctioned institutionalisation and compulsory treatment of disabled people. Fortunately, the UN Disability Committee recognised that the deinstitutionalisation of disabled people would not be possible without the Government amending legislation and policy governing aspects of our lives including inclusive education, care, employment, and welfare benefits so they are compatible with disabled peoples UNCRPD human rights underpinned by the 12 pillars of independent living.

Current independent living campaigns need to consider refocusing their messages to capture what has become a central issue, the increasing threat of institutionalisation for anyone needing care; we must not only be critical of cuts to services but also the availability of institutionalised services.

Going forward the Independent Living movement needs to use key messages that clearly communicate institutions are not the solution, and that institutionalisation occurs in many different forms such as segregated education provision, living in a care home, banged up in a psychiatric hospital or having inadequate or controlling forms of support in one’s own home.

We need to build a big campaign around the theme of institutionalisation and the negative impact this is having for society as a whole and our communities. We need to work together with other organisations in a united and overarching campaign that fights against various forms of institutionalisations for particular groups of disabled people or within specific areas of our lives. If we do not tackle institutionalisation as a political and campaign issue, then we are in danger of returning to the Victorian era of asylums.

Mental Health Act Review

The Government has announced a one year long review of the Mental Health Act overseen by a controversial chair Professor Sir Simon Wessely. The focus on provision for BME communities is much needed and welcome but this review should also focus on overuse and abuse of sectioning of disabled people with learning difficulties and autism.

Broadly speaking the MHA review needs to:

  • Include disabled people with LDs/Autism within their remit of the review
  • Review and replace the Act with legal provisions so they are compatible with disabled peoples UNCRPD human rights standards.
  • Consider whether the existence of ATUs is perpetrating their use, as long as these institutions exist, they will be used.
  • Clear legal protections for disabled people with “challenging behaviour” connected to their impairments from being sentenced, incarcerated in prison or mental health hospitals.
  • The role and investment that inclusive education and well-coordinated multi-disciplinary services have in keeping families together that prevent segregation and institutionalisation of disabled people with LDs/ASC.
  • The Care Act must promote disabled peoples human rights to independent living.

All these practical suggestions have been supported by the UN Convention for Persons with Disabilities Committee who made it absolutely clear, in their observations and recommendations about the UK’s implementation of the UNCRPD, that compulsory treatment of disabled people and the use of drugs as a form of chemical constraint is a violation of their human rights; and further, that the law around education and care must be revised to support disabled peoples human rights to inclusive education and independent living, a number of the pillars of independent living which will keep people out of oppressive institutionalised care.

By Simone Aspis (Changing Perspectives). About Simone:

I am a disabled person who is acting as a Free Our People Campaign advocate for detained in-patients with learning difficulties and Autism who want to be released from psychiatric hospitals. I have over 20 years campaigning experience for Disabled peoples’ human and civil rights, working for People 1st, United Kingdom’s Disabled Peoples Council and Alliance for Inclusive Education.