Scotland’s largest charity for people with learning disabilities is urging the Scottish government to introduce a long-awaited Bill to promote and protect the rights of more than 175,000 people living in Scotland.

Enable says the government now has a “historic” chance to enshrine and protect rights to self-directed care and support, inclusive education and employment and community inclusion and respect.

A Learning Disability, Autism and Neurodiversity (LDAN) Bill is due to be consulted on later this year, but concerns have been raised the Bill has fallen down the list of government priorities.

Enable launched its Rights Now! Campaign at a special event to mark Scottish Learning Disability Week, where the charity also renewed its calls for the establishment of a dedicated Commissioner.

Proposals to create a first of its kind Commissioner have been met with pushback from organisations led by autistic people, who say the Scottish government “risks wasting money on something that is duplicative, ineffective or even counterproductive”.

Autism Understanding Scotland, along with regional groups, Scottish Ethnic Minority Autistics (SEMA) and Diversified Scotland’s Autistic Youth Led Charity, say funding should instead be focused on improving access to assessment and post-diagnostic support and raising awareness of existing commissioners.

Enable – which has led the campaign for a Commissioner alongside the National Autistic Society and Scottish Autism – says a new survey of 629 people with learning disabilities, their carers, parents and supporters shows 97% support the establishment of a Commissioner. A total of 40% of respondents were people with learning disabilities. 

Peter McMahon, a long-standing member of the Enable community, told event attendees that 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 survey found 62% of people struggled with loneliness and access to social care and/or education, and 58% of respondents have struggled with access to employment.

Enable CEO, Theresa Shearer, said too many people with learning disabilities still do not receive the support they are entitled to in order to be active, connected and engaged within their community:

“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 a 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.”

A total of 97% of survey respondents also agreed an LDAN Bill should make sure people have a right to choose the community where they live, while 92% believe the Bill should increase access to local independent advocacy.

Meanwhile, more than 1,000 people with learning disabilities who should be in their own community are thought to be in hospital or institutional settings.

The Scottish government has committed to significantly reduce these numbers by March 2024 in its ‘Coming Home’ implementation plan, following fervent campaigning from the charity.

Part of the plan is to establish a national Dynamic Support Register, to identify risks of admission and support development of local placements. However, this has yet to be rolled out.

Data to support policymaking

The Fraser of Allander Institute (FAI) at the University of Strathclyde has begun its next phase of work to improve data on people with learning disabilities.

A lack of robust evidence and data on this group means government policy ambitions to improve the lives of people with learning disabilities are ‘unlikely ever to be achieved’, according to the research institute.

The FAI, in a new report launched at the same event held in Glasgow this week, recommends data from newly introduced annual health checks for people with learning disabilities be carefully used to build the long-promised national register.

It also recommends that existing data be better linked with other datasets relating to the experiences of people with learning disabilities, and outputs are made regularly available, and for responsibilities to be clarified around a key data source – Learning Disability Statistics Scotland (LDSS) – which has not been published since 2019.

Deputy Director of the FAI, Emma Congreve, told delegates that researchers are “deeply concerned” that people with learning disabilities are absent from discussions and invisible in data in many areas of public life:

“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.

“We have identified three initial actions that could take place in the short-term to support the continuous improvement of the evidence base in Scotland. These are discussed in our new reports launched this week, as we redouble our efforts to understand what can be improved and put forward solutions that we believe will make the biggest difference.”

 

Read more: Autism groups lead call to scrap Commissioner plans; Scotland prioritises neuro-inclusion, says government

 

 

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