Following this year’s Senedd elections several committees have asked the people of Wales what their priorities over the next six years should be. The role of a Senedd committee is to hold Welsh Government to account and make sure that they do their job properly.
In our responses we asked the committees to make sure they always take the needs of people with a learning disability into account and pay special attention to these points. In the below article we have brought together our responses to these consultations.
Health and well-being
Reducing Restrictive Practices
We recently wrote to Ministers calling on Welsh Government to take 6 specific actions to ensure that people with a learning disability and/or autism in (or from) Wales are not subjected to abuse in residential care settings. We believe that people should not need to be sent to expensive out-of-area placements, far away from their families and communities, simply because there is a lack of good quality specialist services in their local area.
The recent allegations of abuse at Ty Coryton, in Cardiff, highlight yet again that abuse is not always identified by inspectorates, and we believe that employing people with a learning disability and family carers to take part in inspection reviews would provide a better opportunity to identify early warning signs of poor practice. We would like to suggest that the Health and Social Care Committee conducts an inquiry into how people with a learning disability and family carers can be involved in undertaking inspections so that their lived experiences can inform the process.
We welcome the publication of the Reducing Restrictive Practices Framework and we are keen to promote this as widely as possible to ensure social care staff understand the importance of using the least restrictive ways of working with the people they support. We believe Senedd committees could play a significant role in monitoring the implementation of the new framework by conducting an inquiry into how it is being implemented across Wales and the impact it has on people’s lives.
The Equality and Human Rights Commission has raised several areas of concern around school exclusions and managing ‘challenging behaviour’ in Welsh schools and criticised Welsh Government’s lack of progress in these areas. Figures show that pupils in Wales with additional learning needs have higher rates of exclusions than those without, and that special schools have the highest rate of fixed-term exclusions of all types of school. This issue needs investigating and addressing to reduce inequalities in the education system. We would therefore recommend that the Children, Young People and Education Committee conducts an inquiry into the high rate of exclusions of pupils with additional needs in all types of school across Wales and provide recommendations to Welsh Government on how this can be addressed.
While residential care settings for adults have a duty to report uses of restraint, there is no legal duty on schools in Wales to do so. As a result, there is almost no official data about how and when restraint is used. However, there is significant anecdotal evidence that children and young people with additional needs and/or challenging behaviour are more likely to experience restraint in the education system.
This can be terrifying and extremely damaging for the children and young people involved. There is also currently no explicit prohibition of the use of restraint for disciplinary reasons in Welsh schools. According to the Equalities and Human Rights Commission (EHRC), “parents, carers and teachers may not understand how or why schools use restraint, and schools may be less able to monitor and minimise its use.” These concerns led the EHRC to undertake an inquiry into the use, reporting and monitoring of restraint in schools in Wales and England.
We believe the Children, Young People and Education Committee should study the findings of the EHRC inquiry and scrutinise Welsh Government’s response and progress in these areas, including monitoring the implementation of the recently published Reducing Restrictive Practices Framework. We asked the Health and Social Care Committee and the Children and Young People Committee to undertake their own inquiries into how schools are implementing the new framework and the impact on children and young people’s experiences.
There are significant health inequalities in Wales that are especially pronounced for people with a learning disability. UK-wide data shows that women with a learning disability die on average 18 years earlier and men with a learning disability 14 years earlier than people without a learning disability. Covid-19 has exaggerated existing health inequalities and urgent action is needed in order to avoid further harm. There are a variety of reasons why life expectancies are so much shorter for people with a learning disability, and we urge the Health and Social Care Committee to study them closely.
Welsh Government has recently introduced the new Learning Disability Educational Framework for healthcare staff in Wales. We believe that the Health and Social Care Committee could play an important role in monitoring the implementation and impact of the new framework on reducing health inequalities. We would also like to draw the Committee’s attention to Welsh NHS Confederation paper ‘Making the difference: Tackling health inequalities in Wales’ and the recommendations laid out within it.
Annual Health Checks
We urge the Health and Social Care Committee to scrutinise the delivery of annual health checks for people with learning disability in Wales. There are several important issues here, including the need to make annual health checks accessible for all adults with a learning disability, and the role of diagnostic overshadowing in making it harder for people with a learning disability to access health care.
All adults with a learning disability should be able to have an annual health check from their GP. However, we know that even before the pandemic not everyone eligible for the annual health check was receiving it and that during the Covid-19 pandemic most people with a learning disability in Wales have not been able to have their health checks.
To prevent long-term health problems for people with a learning disability in Wales we recommend annual health check are reintroduced as soon as possible. Alongside this we recommend there is a long-term commitment to make health checks accessible to anyone who needs them, especially older people with a learning disability who may have more complex health needs.
We worked with Public Health Wales in 2019 to develop an easy read resource pack for GPs to improve the accessibility and uptake of annual health checks. We would like the Health and Social Care Committee to undertake an inquiry into the use of the easy read resource pack and the impact on the uptake and quality of annual health checks across Wales.
Making support accessible
People with a learning disability often struggle not only with accessing services but also with getting the right support when they do access services. In order to get the right support, it is important that services are delivered in a person-centred way, where the support needs and preferences of the person decide what support they receive, rather than people simply being offered the support that happens to be available and affordable.
To tackle poverty and inequality, support must be made available to everyone who needs it, not just those who have the skills to advocate for themselves. Families with disabled children, and people whose support needs prevent them from accessing support, should be offered person-centred support through case coordinators who can help them navigate the system and access the support they need.
Health and social care workforce
Workforce, in relation to recruitment and retention, is widely regarded as the most significant challenge facing the Welsh health and care system now, and in the future. We encourage the Health and Social Care Committee to urgently look into how staff in both the social and the health care sector can be better supported. There needs to be an urgent focus on parity of esteem between the health and social care workforces in relation to pay, terms and conditions and career progression as well as an improvement of these working conditions overall. We need an investment in the workforce now to make sure that people with a learning disability will receive the care and support they need.
Any inquiry into the health and social care workforce should also consider the impact that the COVID-19 pandemic has had on health and care staff wellbeing. Staff wellbeing across all parts of the health and care sector continues to be a key priority for NHS, social care and third sector organisations.
Health and social care integration
The new Programme for Government includes plans to reform primary care and bring public services together as well as investing in integrated health and social care centres across Wales. We believe that health and social care need to work together to ensure that people with a learning disability get the right support at the right time. We would particularly like to see social care professionals ensuring that the people they work with have good access to healthcare, and that they work with people with a learning disability and their families to increase the take up of annual health checks.
We encourage the Health and Social Care Committee to pay attention to how services are linked up and how a more seamless transition between services can be facilitated.
Inclusive Covid-19 recovery
Much of the Senedd’s work will be concerned with controlling and recovering from the Covid-19 pandemic. We ask all the committees to use their powers to ensure that disabled people are not left behind and that policies intended to improve the lives of Welsh citizens do not have a negative impact on disabled people.
We urge the Committees to closely study the report ‘Locked Out: liberating disabled people’s lives and rights in Wales beyond COVID-19’, to understand more on what that would entail. The report lays out how during the pandemic the rights of disabled people have suffered and how because of the pandemic the principles of “Voice, Choice and Control” for disabled people have been severely eroded. The ‘Locked Out’ report argues that this highlights the fact that disabled people’s rights were never fully enshrined in policy in the first place.
Going forward we think it is important to ensure that the work of the Senedd is informed by the social model of disability and the principles of person-centred planning, and that the Committees engages with and listens to people with a learning disability directly to seek their opinions. The All Wales People First Manifesto 2021, for example, sets out some of the key issues that people with a learning disability in Wales would like to see addressed. All the committees have an important role in scrutinising Welsh Government’s plans for Covid recovery and ensuring that disabled people are included at all levels.
Covid research study
We are part of a research project looking at the impact of coronavirus on people with a learning disability in Wales (as part of a wider UK study). The study notes that people with a learning disability already needed improved access to quality healthcare and effective support before March 2020.
Opportunities to access both diminished during the pandemic and this had a significant impact on the lives of people with learning disability. Many have come closer to coronavirus than other people because of the nature of the support they receive. The anxieties people with a learning disability have faced are significant. Reduced access to support services and higher levels of loneliness and isolation have compounded this.
We will be sharing the findings of the research as it progresses and highlighting to policy makers and service providers what needs to be done to ensure that people with a learning disability are not left behind in the post-pandemic recovery process. We would welcome the opportunity to share the findings of the study with all the committees when available.
Returning to face-to-face support
We have heard from many people with a learning disability and their families that day services in some local authority areas are either very slow to restart or are simply no longer being offered. Others are very anxious about face-to-face services re-starting and need reassurance that measures are in place to reduce the risks from Covid-19.
A balance clearly needs to be struck between the need for risk management and the need for services to return to normal as quickly as possible. With restrictions continuing to ease, people with a learning disability with care and support needs should be able to access services to meet those needs so that they too can start returning to normal life and not be left behind.
The pandemic has shown us that there are new and innovative ways of doing things and many people with a learning disability have gained new skills in using technology that were previously never considered possible. It is important that these skills and opportunities are not lost as we return to ‘normality’ and a blended approach should be considered by services where possible. We suggest that the Health and Social Care Committee carries out an inquiry into the return of face-to-face services across Wales and whether this is being carried out in an inclusive and fair way.
Support for parents with learning disabilities
The Welsh Government has commissioned an important piece of work to develop guidance for professionals on supporting parents with a learning disability with the aim of reducing the number of children taken into care. We recommend that the Children, Young People and Education Committee conducts an inquiry into the implementation and impact of the guidance when it is published. This will ensure that social workers are offering the right support to parents with a learning disability and that parents are being treated fairly and equally in order to keep more families together.
Better support for families of disabled children
In our response to the Children, Young People and Education Committee we emphasised the need to tackle child poverty in Wales and to do so by looking at the specific links between disability and poverty. A study into the finances of families of disabled children conducted in 2018 found that only 18% of respondents said that their disability benefits could cover the extra costs linked to their child’s disability or health condition.
These extra costs are significant, with 33% paying over £300 a month and 10% paying between £500-£1000 a month in disability related costs. 36% reported that changes to the benefits system in the past 2 years had left them worse off. These disadvantages will have been made worse by the effects of the pandemic and the extra pressures experienced by families. The Children and Young People Committee should pay special attention to how policy decisions will affect economically disadvantaged families with disabled children and young people.
Loneliness and social isolation
Many people with a learning disability were socially isolated before the pandemic, and while lockdown has given some people new opportunities to connect with people online, for others the pandemic has left them even more isolated than ever before.
There have been issues with some supported living and residential settings not allowing people to see their families, despite Welsh Government guidance to the contrary, as the interpretation of the guidance by individual providers or local authorities seemed to vary greatly. We have called on all committees to closely monitor how people with a learning disability in supported living and residential settings are treated in the coming months, and how their rights can be maintained.
We know that almost a quarter of children and young people in Welsh schools have been diagnosed with an additional learning need. It is important to point out that these were only children who had known additional learning needs. While we cannot know how many people are neurodivergent, we know that a significant number of children go through school with undiagnosed learning disabilities, learning difficulties and neurodivergences. We believe that because of this, schools should put a much stronger focus on how understanding of disability issues informs teaching.
The Additional Learning Needs and Education Tribunal (Wales) Act 2018 is currently being implemented for children who have, or are newly identified as having, additional learning needs (this started on 1 September 2020, with children on ‘School Action’ or ‘School Action Plus’ following from 1 January 2022).
It is vital that the needs of all children with additional learning needs are met, and they are supported to reach their potential regardless of whether they receive support through the new Additional Learning Needs (ALN) system or the old SEN system. We therefore ask the Children, Young People and Education Committee to scrutinise and monitor how the Welsh Government is supporting practitioners, children and young people with an additional learning need, and their families, during the implementation of the Act and the concurrent running of the old system. We suggest that the committee carries out an inquiry into the implementation of the Act and how the needs of pupils with additional needs are being met.
We draw the attention of the Children and Young People Committee to our own work on what changes we would like to see to the New Curriculum for Wales and how we think disability issues can be put at the heart of learning.
The priorities of the Climate Change, Environment and Infrastructure Committee state the need to establish high speed internet throughout Wales to help people stay connected and improve digital infrastructure. We would like the committee to take into account that for many people with a learning disability it will take more than just high-speed internet to stay connected.
While the pandemic has led to many people with learning disabilities gaining important new digital skills, the pandemic has also highlighted the harsh realities of digital exclusion. Many people with a learning disability simply did not have the technology and/or skills to engage with others online during lockdown and were therefore left in total isolation. Not only were they not able to keep in touch with friends and family but with so many services switching to online they found everyday living extremely difficult. For example, online shopping, virtual appointments with support staff, ordering prescriptions, etc.
More work needs to be done to ensure people with a learning disability have the technology and skills to navigate their daily lives and stay connected while at the same time making sure that those who do not have digital skills can still access life.
We encourage the Children and Young People Committee to pay special attention to how people with a learning disability transition between services for different age groups. Young adults with learning disabilities often struggle significantly when services are not joined up and they lose support. This is particularly important for young people with a learning disability who may achieve developmental milestones slower than their peers, and therefore might still need ongoing support beyond the age limits of children and young people’s services.
Access to inclusive play opportunities and extracurricular activities
All children and young people, including disabled children, need access to play opportunities to support their learning and development. Learning Disability Wales would like to highlight the Play Wales information sheet ‘Play: inclusive provision’.
For young people with a learning disability, having access to places to go and things to do alongside their peers is also important. We therefore encourage the Children and Young People Committee to undertake an inquiry into how the needs of disabled children and young people with a learning disability to access inclusive play and leisure activities are being met.
Integrating employment opportunities into education
In their 2021 Manifesto All Wales People First write that: “It is important that employers in Wales create opportunities for people with learning disabilities. Many people with learning disabilities have succeeded in the workforce when reasonable adjustments have been made, such as easy read information in adverts and interviews, support to learn a job and paid internships.”
We urge the Children and Young People Committee to look specifically into supported employment and how it can be integrated into the curriculum to make sure that young people with learning disabilities get a fair shot. This includes making sure young people are aware of and have equal access to work experience in local businesses and equal access to work-based learning, such as traineeships, internships, and apprenticeships.
It is essential that these young people are provided with individualised support to enable them to do so. Schools, colleges, and Careers Wales need to ensure these opportunities are offered and that young people with learning disabilities are not led to believe that just because they are disabled, they will never get to expect more from life than going from service to service.
For the committee this also means making sure that at every step measures taken to increase employability, for example the Young Person’s Guarantee, are also inclusive to young people with a learning disability.
As such we urge the committee to scrutinise and track the progress of the new Further Education Independent Living Skills curriculum, in particular Pathway 4 Supported Internships, the Welsh Government supported traineeship and inclusive apprenticeship pilots, and the new Job Growth Wales+ Youth Programme 2022-2026.
Making supported employment standard
Supported employment agencies can offer specialist support to help people find, get, and keep a job through learning in the workplace. This ensures that learners have a positive first experience within the world of work that will set them up for the future. We also suggest Careers Wales explores closer cooperation with NHS Wales to provide meaningful work experience placements for pupils with additional learning needs. More information on what such partnerships could look like can be found in our position paper “How can public sector employers like the NHS help people with a learning disability or autism get jobs?”
Fair work and closing the learning disability employment gap
We are glad to have seen Welsh Government repeatedly showing a strong commitment to fair working conditions and particularly to creating a healthy, safe and inclusive work environment. We would like to underline that inclusivity in working environments has to include an environment that welcomes and supports people with a learning disability and/or autism, as well as traditional attempts to make physical environments more accessible.
To ensure that workforces and recruitment become more inclusive for people with a learning disability and/or autism, we suggest integrating a range of measures into employment, namely supported work placements, supported internships and supported apprenticeships. It is important that these measures are widely available to all age groups, not just young people aged16-18. Many young people with a learning disability and/or autism remain in education far longer than the general population and will often need some form of specialist employment support at various stages of their lives. Thus, the typical ‘one-off’ support offered to school/college leavers or the unemployed is simply not sufficient for them.
To this purpose we would like to see the Economy, Trade and Rural Affairs Committee take leadership in setting standards and demonstrating the promotion of well-being built into private sector contracts. We support the development of clear consistent standards through new indicators and would like to see indicators that report on employment of people with a learning disability and/or autism, with particular emphasis on the public sector reporting efforts in leadership in the employment of these people in the next five years.
Furthermore, we suggest developing clear targets to measure social value within procurement that should be linked to the Well-being of Future Generations Act in terms of job creation, inclusive workforce, workforce development and environmental standards.
A fairer Wales
Fighting climate change with fairness
We agree that protecting the environment and fighting climate change is of vital importance. After all, climate change disproportionally affects disabled people. However, eco-ableism occurs when changes to protect the environment or fight climate change are put into place without taking accessibility issues into account and disabled people are thus disproportionately disadvantaged.
For example, while it is good to encourage walking and cycling, we would have liked to see an acknowledgement that changes made to accommodate the more eco-friendly forms of travel should never disadvantage disabled people in their transport needs. Avoiding eco-ablism is important both in terms of not unreasonably impacting the lives of disabled people in practical terms (such as reducing the availability of accessible parking and routes for the creation of bicycle paths) as well as avoiding shame and stigma for using less environmentally friendly transport measures when necessary.
Strategic investments in Wales
Some areas of Wales struggle with poverty and have done for a long time. We recommend that the Economy, Trade and Rural Affairs Committee scrutinises the Welsh Government’s commitment to the Socio Economic Duty for Wales and ensures that all commissioning and investment decisions are taken with the Duty in mind. We furthermore urge the committee to expect accessibility to be built into projects funded by Welsh Government.
Too often accessibility concerns are merely an afterthought meaning that the onus is on the disabled person to ask for reasonable adjustments. Instead, Welsh Government should be held accountable to make sure adjustments are built into projects form the start. For people with a learning disability this means having information provided in accessible formats such as easy read and to make sure that support is easily available.
Improving public transport
We urge the Economy, Trade and Rural Affairs Committee to engage with the Transport for Wales strategy and scrutinise its commitment to improving access to public transport in rural areas. In our consultation response to the strategy, we have outlined some of our concerns and priorities.
Consideration needs to be given not only to making public transport physically accessible, but also for booking and purchasing tickets to be easy to understand and use by people with a learning disability. There also needs to be strategic and substantive investments in services and resources that will support people with learning disabilities specifically to travel, for example through travel training. The plans to extend public transport and to make it safer, more reliable, and affordable will greatly benefit disabled people in general and people with a learning disability in particular. People in North Wales in particular will benefit greatly from more reliable and accessible public transport.
The Transport for Wales strategy has a strong focus on improving opportunities for environmentally friendly modes of travel like cycling and walking. We urge the committee to consider the needs of disabled people in this who should have the same access to these modes of transport as everyone else.
Disability Equality Forum, 2021: Locked out: liberating disabled people’s lives and rights in Wales beyond COVID-19.
Learning Disability Wales (2021): Wales needs a clear strategy for tackling wider health inequalities
Engage to Change, 2021: Consultation Response: Llwybr Newydd–a new Wales transport strategy.
Learning Disability Wales (2021): Is there a ‘Winterbourne in Wales?
Learning Disability Wales, 2019: Why climate change is a disability issue.
Learning Disability Wales (2021): School should work for every learner.
Mencap (2018): Information on Health Inequalities