Our response to the Learning Disability, Autism and Neurodivergence Bill

Disability Equality Scotland recently submitted our response to the Scottish Government about what should be in their proposed Learning Disability, Autism and Neurodivergence Bill (LDAN Bill). The bill is about making sure people with learning disabilities, autistic people and neurodivergent people can access the services and the support they need. We wanted to know what our members thought of the bill and ran multiple surveys, gave people a chance to call us on the phone and write to us directly.

Because the bill covered so many areas we wanted to particularly focus on specific areas that our members have previously told us are important to them. Our areas of focus were health and social care, transport, housing and independent living, inclusive communication, mental health and capacity, complex care and social security.

The first thing the Government asked us was who we think the LDAN Bill should apply to.  Our members clearly stated that  it must include all disabled people whom are autistic, have a learning disability and/or are neurodivergent. It should take all reasonable steps to ensure that anyone living in Scotland who is an autistic person, a person with a learning disability and neurodivergent people is able to access the support and assistance they may need to live independently. When the Scottish government are determining definitions within their bill they must do so on a co-designed basis with disabled people, DPO’s, public bodies and lawyers who are experts in disability and human rights law. Our members agreed with the government’s idea for a national strategy to underpin their bill. However,  as the bill is likely to make big changes for disabled people we want to be sure that the bill works as intended. To do this we think there should be a transition plan enshrined in law to prepare for the introduction of the strategy with regular progress reports so that before the law fully applies any delivery issues are overcome.

For our priority areas we told the government about our view of their ideas and used what members told us to explain our response. The key things which DES’ Members want to see happen in the LDAN Bill are:

  • Introduction of mandatory training for the public sector on disability equality so that public sector workers (such as teachers, healthcare workers, housing workers, transport staff etc.) can better support people with learning disabilities, autistic people and neurodivergent people.
  • There should be a right to inclusive communication enshrined in law so that people are able to get the information they need in a way they can understand. This could include but not limited to appointment letters for health appointments, social security application forms and criminal justice proceedings and your rights within the judicial system.
  • Independent advocacy can support individuals covered by the LDAN Bill by empowering them to as right-holders to participate within those rights. DES believes that advocacy provision should relate to all areas of people’s lives and not be restricted to housing and gender-based violence Individuals should have the right to opt-out of formal advocacy but encouraged then to utilize informal advocacy. We also asked that advocacy organisations are properly funded to be able to support individuals under this Bill.
  • 70% of respondents thought it was a good idea that making it a duty of Health and Social Care Partnerships to ensure that people covered by the LDAN have a right to access to apatient passport. We support extending this scheme because it will help provide disabled people with greater clarity and access to the support they need when interacting with healthcare services.
  • The Scottish Government’s plan to extend the annual health checks for people with learning disabilities to those with autism is supported overwhelmingly by DES’ members. The government’s idea was to extend it to all those over 16; we urged the government to extend this to children where appropriate.
  • Scotland’s mental health laws define autism and learning disabilities as “mental disorders.” 87% of respondents said that they supported removing this “highly offensive and outdated” wording should be removed from our law. Members were also very clear in their view that being autistic or having a learning disability isn’t a mental illness so to class them as such is wrong. DES told the government that our members believe that there needs to be an urgent reform of our mental health laws so that learning disabilities, autism and neurodivergency aren’t covered by the Mental Health Act. However, we do think that if you have a mental health condition or illness then you should be able to be treated under the mental health act irrespective of whether you are a person with a learning disability, an autistic person or a person with a neurodivergence.
  • 84% of our members support the creation of a national care service. Our members are concerned that in its current form the service does not reflect the localised needs of disabled people. Furthermore, the set up costs are prohibitive and any National Care Service must be “properly funded.” In establishing a National Care Service we would urge the government that it’s operation should reflect the needs of individuals and be person centred. In addition, this service must be co-designed with disabled people and care workers so that it achieves the desired results of universal social care while avoiding a postcode lottery on care standards and quality.
  • We agree with the Government’s proposal to set up a national Social Care Plan for people with Learning Disabilities, Autistic People and Neurodiverse people. 78% of our members think this would be a very good idea.
  • We agree with the proposals to create of an independent advocacy service for housing. Introduction of a service of this kind will help provide greater agency for people covered by the LDAN bill but also disabled people more generally. The advice service should also ensure that people can receive advice around mortgages and rents to ensure disabled people are able to make informed financial decisions and that they have an awareness of support and adaptations which they may need to live independently in their own home. Our members think this service would be a positive step for disabled people.
  • 72% of our survey respondents said that introducing a legal requirement to build suitable housing for people with autism, learning disabilities and neurodiverse people is a very good idea. These plans should backed up by appropriate housing targets which are applied by Government in the same way as affordable housing targets so that there is a minimum number of adapted houses included as part of any future housing developments to increase the supply of suitable housing for disabled people. We also think that the right to independent living (Article 19 of UNCRPD) should be embedded within local authorities’ strategic housing investment plans and affordable housing programs so that everyone can have a home which supports their needs.
  • With the Scottish government proposing to increase the number of accessible homes almost three quarters of our survey respondents strongly agreed that data should be collected to make sure that disabled people are getting the right support for their needs and circumstances.
  • 79% of our members surveyed said they were strongly supportive of making Social Security Scotland explain how they are providing information to disabled people in accessible and inclusive formats. For people with learning disabilities, autistic people and neurodiverse people DES would seek to ensure that all communications are provided in line with the principles of inclusive communication.
  • Two thirds of those who answered our survey thought that making national and local transport plans set out how they will consider the specific needs of people with learning disabilities, people with autism and neurodivergent people when accessing said services. A further 21% said this is a good idea. We fully support the government’s ideas around increasing accessibility initiatives and improving travel information systems.

While this article does not cover all aspects which we replied on a full copy of our consultation submission can be accessed on request. All the key things we want to see within the LDAN bill need to have an accountability mechanism so that we know what is working and what isn’t working as well as it should. DES believe that the best way to do this is to create a new Disability Commissioner that is accountable to parliament. The commissioner should appoint deputy commissioners for each strand within the LDAN bill (or any future disability legislation) so that these areas are specifically addressed. However, to ensure that services are being delivered appropriately and that people’s rights under the UN Convention on the Rights of Persons with Disabilities are being met the Disability Commissioner should be able to conduct independent inspections of services similar to that of the Care Commission with independent reporting and recommendation powers.

The LDAN bill consultation response has been the main research focus for spring 2024 due to its size and scale. We have submitted our views to Ministers and we await their response; at all stages we want a bill and an act which is co-designed by disabled people, for disabled people and that achieves equity and equality for everyone covered by the LDAN bill.