Scotland’s disabled community feels increasingly isolated and legislation is the only way to address inequalities, urges a new campaign

Scotland has a “historic” chance to protect the rights of people with learning disabilities in new legislation according a leading disability charity.

Enable made the announcement during Scottish Learning Disability Week at the launch of its Rights Now! campaign (3 May) where Maree Todd MSP met people with learning disabilities, their families and supporters.

Rights Now! urges the Scottish Government to maintain its commitment to introduce a new Learning Disability, Autism and Neurodiversity (LDAN) Bill in the Scottish Parliament. The charity is appealing for the new laws to bring increased protection and promotion of the rights of Scotland’s 175,000 citizens who have learning disabilities.

Enable - Scotland's largest charity for people with learning disabilities – also used the event to reveal the results of a survey which show members of the community it supports feel increasingly isolated from society through a lack of crucial support and access to key services.

Current evidence suggests the employment rate for people with learning disabilities is extremely low, while the average life expectancy of someone with a learning disability is shockingly 20 years shorter than those without.

With people in this group also twice as likely to die from preventable illnesses, Enable is making the case for a Commissioner role to be enshrined in the LDAN Bill to protect people’s rights and to hold public bodies to account if those rights are not upheld.

The Rights Now! campaign calls for new legislation which enshrines and protects:

• The right to self-directed care and support;
• The right to inclusive education and employment;
• The right to be included and respected in the community;
• A commissioner role to hold public bodies accountable to these rights.

Enable CEO, Theresa Shearer, said: “For almost 70 years, Enable has campaigned for an equal society where everyone has the right to live, work and participate as active and respected citizens. Yet too many people with learning disabilities still do not receive the self-directed social care in their community which should be their entitlement; employability services which could give them the opportunity to secure a job and contribute in inclusive workplaces; or the support they need at school and in the community to be active, connected and engaged.

“We are pleased the Scottish Government shares our view that new legislation is needed to protect and promote the rights of people with learning disabilities. This is an historic opportunity to bring forward a Bill which ensures the rights of people with learning disabilities are recognised, respected and real – now, and for the generations to come.”

The survey results identified loneliness, social care, education, employment and transitions as areas of life where people with a learning disability lacked support.

Meanwhile, 97% of respondents also backed Enable’s call for a commissioner role to be in place to uphold their rights.

Peter McMahon is a long-standing member of the Enable community and was at the event at the University of Strathclyde to back the charity’s calls for action.

“I’ve had a learning disability all my life and now have to deal with a visual impairment, which has drastically increased the daily challenges I face,” he said.

“With the cost of living crisis and a general lack of support and understanding for people in my situation, there has never been a more important time to give the vulnerable people in our community a voice.

“Our rights are not properly recognised so new laws are very important. Having a commissioner would also make the public services we rely on take notice of the challenges we face and make life fairer for all.”

The Fraser of Allander Institute also addressed the event as it published a new report on the need for better evidence and data on the challenges people with learning disabilities face.

It states that addressing the scale of inequalities faced by people with learning disabilities requires concerted action from government, industry and wider society.

“This is important if we are to move further towards a Scotland where people with learning disabilities and their families can realise their rights and live as an included and valued part of society,” say the authors.

“Key to this is the appropriate alignment of many areas of current policy development such as the new Learning Disabilities, Autism and Neurodiversity Bill, which is scheduled to come before Parliament in 2024, along with a new Human Rights Bill that will enshrine the UN Convention on the Rights of Persons with Disabilities into Scots law, subject to devolved competencies. Furthermore, the process of establishing a National Care Service is underway and both an Equality Evidence Strategy 2023 to 20251 and Scotland’s first data strategy for health and social care2 have been published in recent months.”

Proposed legislation and new strategies can provide opportunity and optimism if implemented competently but the fact remains that effective action needs to be informed by a robust evidence base, the report says.

To be able to achieve this, it is important to take stock and review what we know about the data currently available not just in Scotland but across the UK, and in countries that can offer useful comparisons and benchmarks.

Although there is plenty to consider and learn from elsewhere there are many common challenges and trade-offs between cost, frequency, and data richness to work through, the report states. For example, not everyone with a learning disability will identify as such, surveys might not be designed in a way that is accessible to someone with a learning disability, some people might not want to disclose their disability, and there might be confusion as to how we define learning disabilities.

Emma Congreve, deputy director of the Fraser of Allander Institute at the University of Strathclyde, said: “We continue to be deeply concerned that in many areas of public life learning disabilities are absent from discussion and invisible when it comes to relevant data.

"Improving the quality and quantity of information that is collected and shared is a critical step to ensure those with learning disabilities are able to get the right support.”

Rights Now! Survey Results

629 respondents, made up of people with learning disabilities, supporters, parents and/or carers were asked for their views either through focus groups, at local meetings and group events or via email.

The results were as follows:

Access to Support
62% have struggled with loneliness, access to social care and access to education
58% have struggled with access to employment
57% have struggled with transitions

Social Care and Health
88% agree that the Bill should ensure people have access to Self-Directed support
97% think that the Bill should make sure people have a right to choose the commu-nity they live in
54% have found it difficult to access the social care support they need

Community Support
91% think the Bill should help to ensure that people can live in a community of their choice
88% agree the Bill should help people access community-based support

Education and Employment
95% think that the Bill should make sure that people with learning disabilities have access to education which supports them to have a good life
96% agree that the Bill should ensure people with a learning disability have support to get a meaningful, paid job

Benefits and Money
49% have had issues accessing the benefits they are entitled to
42% have experienced money problems in the last year

National and Local Advocacy
97% think there should be a commissioner role created to make sure people have their rights upheld
92% think the Bill should increase access to local independent advocacy
87% think the Bill should ensure public bodies provide accessible information