Written evidence from Learning Disability England (HCS0044)

 

Submitted by Henry Wright, Policy and Alliance Coordinator at Learning Disability England

 

About Learning Disability England

 

Learning Disability England is bringing people and organisations together to create a movement for change where people with learning disabilities, families, friends and paid supporters come together on an equal basis.  As a membership organisation, members work together to build a world where people with learning disabilities have good lives with equal choices and opportunities.

 

This response is created from our work with members and partners over the last few years.

 

What people tell us is needed

 

Learning Disability England supports the following vision developed by Social Care Future:

‘we all want to live in the place we call home with the people and things that we love, in communities where we look out for one another, doing the things that matter to us’

This is a clear and powerful definition of what it means to have a home. Its emphasis on being part of a community and exercising individual choice and preference is in keeping with UN CRPD Article 19’s statement that community services and facilities should be responsive to the needs of people with disabilities.

Human rights are a central pillar of the Social Care vision Learning Disability England members created https://www.learningdisabilityengland.org.uk/wp-content/uploads/2021/05/SCF-session-graphic.jpg

 

When asked recently on what choice, control and independence mean to them, some members said the following:

 

‘Choice, control and independence is about helping individuals to maintain their independence, allowing them to have control over their lives and giving them choice over the things that matter to them so they can achieve their goals and live happier, healthier, independent lives.’

 

This response highlights that being independent does not mean living without support of any kind. Care settings should be supporting and enabling people with learning disabilities to live independently and with the same opportunity to express choice and have control over their lives as non-disabled people.

 

Covid 19

 

The disproportionately negative effects of the pandemic on the lives of people with learning disabilities (along with many other minority groups) shows that there is still work to be done to ensure that the human rights of people with learning disabilities are upheld.

 

Covid 19 has highlighted many of the existing failures to protect or uphold human rights for people with learning disabilities, but it did not create them.

Prior to the pandemic there was significant evidence of care failures leading to people dying premature avoidable deaths, abuses in care settings, restrictive approaches being rife and the misuse of DNACPR.[1]

 

A lack of equality in investment meant that that less than 6% of people with learning disabilities had paid employment. This number appears to have decreased during the pandemic[2] and ADASS recommended employment support be a focus for Covid recovery plans locally.[3]

 

In addition, the pandemic demonstrated that people with learning disabilities and their families are not at the heart of policy development or communication as they struggled to get relevant or accessible information or be included in mainstream policy. An example of this was people with learning disabilities not being included in a Covid 19 vaccination priority group despite data showing that this group of people had died from Covid 19 at six times the rate of other people during 2020.[4]

 

Learning Disability England members have consistently called for the lessons from the pandemic to be learned and a fairer, more inclusive community and support services system to be created. Working in true partnership with people, their families and supporters through co production must be at the heart of any changes.[5]

 

People from minority ethnic groups

 

We know from government data that people from black and minority ethnic groups were disproportionately affected by Covid, including increased proportion of people dying. This included people with learning disabilities who a Public Health England report found

 

The proportions of COVID-19 deaths among people with learning disabilities from an Asian or Asian British group, or a Black or Black British group were around 3 times the proportions of deaths from all causes in these groups in the corresponding period of the previous 2 years

 

Learning Disability England’s work with members through a roundtable (Living through Covid 19 and Lockdown) and a partnership with the Race Equality Foundation found a lack of formal information on people’s experiences. People with learning disabilities, their families and paid supporters told us that they were often not supported to challenge racism, experienced a lack of cultural understanding in services and felt they were not included in voice or decision-making structures.

 

The Race Equality Foundation paper on addressing inequalities through Covid 19 offers some evidence and opportunities for action. [6]

 

DNACPR

 

The Learning From Deaths Mortality Review evidence from 2015-2020 found the following:

The proportion of adults with a Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decision at the time of their death has risen slightly between 2018 and 2020. Of those with a DNACPR decision, the proportion that were known by the reviewer to be correctly completed and followed decreased between 2018 to 2020.[7]

The issue highlighted in the above statement emerged clearly during the Covid-19 pandemic, with DNACPR decisions being found to be in place for people with learning disabilities without the necessary reasonable adjustments made to communicate the nature and importance of the decision clearly, conversations with family members not having taken place in sufficient detail and, in some cases, the individual and their family having no knowledge of the DNACPR.

Learning Disability England members provided some of the 1st evidence of the extent of this misuse in the rapid evidence we gathered in 2020[8]. The examples shared showed that paid supporters and their managers were often the people identifying inappropriate use and advocating with people.[9]

The CQC report, Protect, respect, connect – decisions about living and dying well during COVID-19’, states the following about some of the situations they encountered during their review:

(in some cases) conversations around whether they would want to receive cardiopulmonary resuscitation (CPR) came out of the blue and that they were not given the time or information to fully understand what was happening or even what a DNACPR was. In some cases, people were not always aware that a DNACPR decision was in place. This could be hugely distressing for people and their families and/or carers.[10]

The above raises concerns over accessibility of information for a person with a learning disability being asked to make a very important decision. CQC found that many of the relatives of people with learning disabilities they spoke to felt that the conversations about DNACPR decisions came ‘out of the blue’ during a time of great stress and emergency. They also fed back that the range of different acronyms and inaccessible language made engagement in the decision for them and their loved ones extremely challenging.

Learning Disability England supports this movement to a more person-centred approach to advance care planning. The information around such planning should be clear and accessible for people with learning disabilities and their families and supporters. There must also never be any suggestion of a ‘blanket’ approach to the application of DNACPR decisions to a particular group of people. The CQC report makes it clear that earlier discussions of advance care planning should be taking place, with accessible information and all reasonable adjustments made. 

 

Coproduction

 

We believe coproduction can help uphold rights by ensuring there is equality in power and contribution when designing, delivering or evaluating services of any kind.

 

Through the pandemic we saw examples of coproduction aimed at upholding rights in care settings.

 

These included:

 

-          The DNAR resource pack, training and information created by Turning Point was made open source for all supporters and through a collaboration with Learning Disability England, easy read resources created to give equal access and equip everyone on this fundamental rights issue.[11]

-          The Right2Visit online tool was created by self-advocates, legal advisers, families and organisations as an accessible way of understanding rights, guidance and policy considerations in maintaining contact with family and friends when someone lives in a care setting.

-          The accessible information campaign highlighted the problems and impact of people with learning disabilities and autistic people not being able to access information equally. A partnership with British Institute of Human Rights developed a resource on rights and how to challenge a lack of accessible information.[12]

 

Mental health care or specialist services

 

The ongoing failures in the treatment of people with learning disabilities and autistic people in specialist settings is well documented not least by the Health and Social Care committee in 2021.[13]

 

Learning Disability England would signpost you to the work led by self- advocates and families in campaigns such as:

 

Right to Home and the We are Human Too resource

Rightful Lives and the 8-point plan for change

 

These self-advocate and family led campaigns have recorded detailed examples of the failings as well as solutions or examples of when rights are upheld.

 

Home and equality in housing choices

 

Article 19 of the UN Convention on the Rights of Persons with Disabilities states that a person with a disability should have the same opportunity to choose where and with whom they live as a non-disabled person. A person with a learning disability may require whole life support to enable them to live a good life that is independent.

 

At Learning Disability England, our work has shown us that too often the housing choices of people with learning disabilities are limited by or dependent on the availability of the support they require. That is a barrier to people with learning disabilities having equal opportunities to choose where and with whom they live. We regularly hear of people being placed in existing provision without the opportunity to explore choices of different kinds of housing that may exist locally. This was reinforced in our Big Housing Conversations work. Housing providers told us of structural barriers to developing a range of housing options. We heard of wide variations in approach and quality.

 

Rights are upheld when people understand the implications of options for security of tenure, individual agency and changing support or where they live over time.

From experience we shy away from championing any 1 model as we know the critical principles or elements can be misunderstood or subverted. We support the Real Tenancy Test and REACH standards.

 

It is really important that housing provision is separate to the support provision in order to enable these housing rights, choice and control for people with learning disabilities. This would allow people to move and bring their support team with them, or to change the support they receive without having to move home.

 

Service delivery and options

 

The UK-wide research[14] into the impact of Covid on people with learning disabilities from winter 2020 to August 2021 includes the following findings:

 

  1. Restrictions on visitors

 

30% of people with learning disabilities and 40% of supporters of people with profound and multiple learning disabilities reported restrictions on who could visit or where they could go.

 

The easy read summary[15] says that ‘50% of people with severe or profound learning disabilities found that visitor restrictions made life worse.’

 

  1. Changes to services and support[16]

 

35% of people reported they are paying for services they are still not receiving.

 

20% of people with learning disabilities reported receiving less support than pre-pandemic and 48% of people with profound and multiple learning disabilities were getting less support.

 

08/11/2021


[1] LeDER review 2015 – 2020 http://www.bristol.ac.uk/sps/leder/uob-2015-21/findings-from-leder-reviews2015-2020-/

[2] https://digital.nhs.uk/data-and-information/publications/statistical/adult-social-care-outcomes-framework-ascof/england-2020-21

[3]  https://www.adass.org.uk/media/8647/adass-rapid-learning-review_ld-autism_may-2021_recs_v9.pdf

[4] COVID-19: deaths of people with learning disabilities - GOV.UK (www.gov.uk)

[5] https://www.learningdisabilityengland.org.uk/news/latest-news/house-of-lords-life-after-covid/

[6] https://raceequalityfoundation.org.uk/wp-content/uploads/2021/06/Collaborative-briefing-learning-disability-FINAL-1.pdf

[7] LeDER review 2015 – 2020 http://www.bristol.ac.uk/sps/leder/uob-2015-21/findings-from-leder-reviews2015-2020-/

[8] https://www.learningdisabilityengland.org.uk/wp-content/uploads/2020/05/DNAR-Survey-Final-Report-13052020.pdf

[9] https://www.learningdisabilityengland.org.uk/wp-content/uploads/2020/05/DNAR-Stories-and-Case-Studies-Final-13052020.pdf

[10] www.cqc.org.uk/publications/themed-work/protect-respect-connect-decisions-about-living-dying-well-during-covid-19

[11] www.turning-point.co.uk/DNACPR

[12] New easy read guide to the right to accessible information! | British Institute of Human Rights (bihr.org.uk)

[13] Treatment of autistic people and individuals with learning disabilities (parliament.uk)

[14] https://warwick.ac.uk/fac/soc/cedar/covid19-learningdisability/results/wave3results/

[15] https://warwick.ac.uk/fac/soc/cedar/covid19-learningdisability/results/wave3results/easier_to_read_briefing_-_restrictions.pdf

[16] https://warwick.ac.uk/fac/soc/cedar/covid19-learningdisability/results/wave3results/easier_to_read_briefing_-_support_and_services.pdf