MACS Response to the Learning Disabilities, Autism & Neurodivergence Bill Consultation - April 2024

About you

Are you responding as an individual or an organisation?

Organisation

What is your name?

Name: Lynn Pilkington

What is your organisation?

Organisation: MACS

What is your phone number?

Phone number: 07774046253

What is your postcode?

Postcode: G43 2YN

What is your email address?

Email address: lynn@lynnpilkington.com

If you are responding as an organisation, please tell us which of the following categories best describes you?

Disabled persons/Neurodivergent-led/Autistic-led organisation

If you are responding as an individual, please tell us which of the following categories best describes you?

Neurodivergent person (i.e. autistic person, person with ADHD, person with a learning difficulty (i.e. dyslexia, dyscalculia))

Which ethnic group best describes you?

White Scottish

What was your age last birthday?

25 - 34

Which local authority area do you live in (or operate in if an organisation - tick all that apply)?

  • Aberdeen City
  • Aberdeenshire
  • Angus
  • Argyll & Bute
  • City of Edinburgh
  • Clackmannanshire
  • Dumfries & Galloway
  • Dundee City
  • East Ayrshire
  • East Dunbartonshire
  • East Lothian
  • East Renfrewshire
  • Falkirk
  • Fife
  • Glasgow City
  • Highland
  • Inverclyde
  • Midlothian
  • Moray
  • North Ayrshire
  • North Lanarkshire
  • Orkney
  • Perth & Kinross
  • Renfrewshire
  • Scottish Borders
  • Shetland Islands
  • South Ayrshire
  • South Lanarkshire
  • Stirling
  • West Dunbartonshire
  • West Lothian
  • Western Isles (Eilean Siar)

Which of these options best describes how you think of yourself?

Heterosexual/Straight

Which gender identity best describes you?

Female

The Scottish Government would like your permission to publish your consultation response. Please indicate your publishing preference:

Publish response with name

Do you consent to Scottish Government contacting you again in relation to this consultation exercise?

Yes

I confirm that I have read the privacy policy and consent to the data I provide being used as set out in the policy

I consent

Reach and Definitions: Who Should the Bill Include?

Which of these proposals do you agree with (if any)? Please tell us why

Views:

This is a wide-reaching Bill, making it very comprehensive. We note this reflects the multiple barriers faced; yet, it also may be deemed so large that it is inaccessible. This is counter to the ethos of the Bill.

Regarding diagnosis, we recognise the multiple barriers faced by individuals to obtain a diagnosis, and there is not always parity across Scotland to accessing this. We know that self-diagnosis is valid within disabled communities, thus we support this.

We are unsure as to why autism is a specific named condition in the title. We note that the lives of those with learning disabilities can be vastly different from those who are neurodivergent and question how useful it is to cover both in the one Bill. As mentioned in the Bill, often neurodivergent people face stigma and discrimination because they do not ‘sound or look disabled’. We wonder whether this Bill reinforces an assumption.

We agree with proposal 2 to use the word ‘neurodivergent’ as this is supported by disabled people. We welcome this opportunity to have a conversation about what disability, especially hidden and invisible disabilities, ‘looks like’ and look forward to reducing stigma around this.

Disabled people face notable disadvantage when using public transport, which is our priority area. However, transport is often a key part of engaging in other parts of society, and in enabling human rights (such as access to employment, education, healthcare, and social connections), thus we have responded to other relevant areas. We do so taking on board the views of lived experience at all times.

Which of these proposals do you not agree with (if any)? Please tell us why

Views:

No specific proposals mentioned for disagreement.

Is there anything else that we should consider in relation to this topic?

Views:

MACS welcomes the opportunity to respond to this Bill. We work to support human rights to be respected and protected for disabled people. As evidenced in the Bill, we recognise the negative outcomes for people with learning disabilities, people who are neurodivergent, and autistic people. This is why we see this Bill as being a crucial step in the right direction.

We note that people with learning disabilities, people who are neurodivergent, and autistic people are not a homogenous group. That said, there are similarities in barriers faced in society. We embrace the social model of disability and know that society could work better for these audiences. On a human rights basis, we need to do better, but we also can benefit from diversity of thought when people with learning disabilities, those who are neurodivergent, and autistic people are better included in society.

Overall, we agree with the LEAP principles and stress the importance of involving people with lived experience (experts by experience). Disabled People’s Organisations (DPOs) are central to our work, and we would encourage engaging with DPOs to be central as this Bill progresses.

Mandatory Training in the Public Sector

Do you agree with this proposal? Please tell us why

Views:

We support this proposal. All disabled people deserve to access public services. All public sector workers should have the training to be able to engage pan-disability. This may be especially true when working with hidden disabilities. In all training, lived experience involvement should be a priority. In terms of language, we would suggest ‘Disability Equality’ Training instead of ‘Disability Awareness’.

Do you not agree with this proposal? Please tell us why

Views:

No specific proposals mentioned for disagreement.

Is there anything else that we should consider in relation to mandatory training?

Views:

No additional considerations mentioned.

Inclusive Communications

Which of these proposals do you agree with (if any)? Please tell us why

Views:

We support that all communication should be proactive and automatically mindful of the needs of the user. Regarding Proposal one, currently under the Equality Act 2010, disabled people can request an alternative means of communication. This does not, however, guarantee that the request is acted upon, and this may be treated as a preference rather than an essential need.

Inclusive Communication training expands beyond font size. This should encompass images, body language, and all forms of informal and formal communication. This could include an opportunity to ask questions.

Which of these proposals do you not agree with (if any)? Please tell us why

Views:

No specific proposals mentioned for disagreement.

Is there anything else that we should consider in relation to inclusive and accessible communication?

Views:

No additional considerations mentioned.

Data

Which of these proposals do you agree with (if any)? Please tell us why

Views:

We strongly support the need for improved data collection and reporting to enable a better understanding of the requirements of people with learning disabilities and neurodivergent people through their life. This will build evidence on whether they are able to realise their rights.

If we reflect on the example of the Accessible Travel Framework and its Annual Delivery Plans, we will see that some 8 years into a 10-year framework, we are unable to measure progress due to the limitations on the data collected, undefined measures of success, and inability to measure current data from any meaningful baseline. This does not give people confidence that plans and strategies have defined deliverables or that the data needed to measure progress is being collated.

It shows that people are also not being involved in what data they would need to understand and have confidence in progress. We are hopeful for improvements in the above area, but there needs to be a willingness to start from the point of agreeing what information is needed to measure progress. What do people want to see, feel, experience? How do they want this information made available to them, presented (format), rather than the current trend of trying to make available data (good, bad, abundant, or sparse) determine a measure and a report layout work for an audience without considering their needs.

We also need to consider how we report data and move away from complex reports to key “measures” and, where appropriate, consider infographics and video/vlog updates. We need to learn how people want to access data, including formats and channels.

Which of these proposals do you not agree with (if any)? Please tell us why

Views:

No specific proposals mentioned for disagreement.

Is there anything else that we should consider in relation to data?

Views:

No additional considerations mentioned.

Independent Advocacy

Which of these proposals do you agree with (if any)? Please tell us why

Views:

People with learning disabilities, people who are neurodivergent, and autistic people often face extra challenges in navigating the world. Having access to advocacy is a key support. We agree that there is a need for advocates to be trained in this specialist area. Often those with learning disabilities and difficulties, those who are neurodivergent, and autistic people have minimal family or social networks and support, which means high-quality independent advocacy is essential. We agree that access to advocacy should be strengthened and information should be given automatically.

Which of these proposals do you not agree with (if any)? Please tell us why

Views:

No specific proposals mentioned for disagreement.

Transport

Which of these proposals do you agree with (if any)? Please tell us why

Views

MACS strongly believes in the statement, ‘Not being able to travel easily, comfortably, and safely will impact many areas of life such as employment, education, and access to health, social care and day services, and basic needs like getting shopping and socialising.’ Without transport, so many other opportunities are denied.

MACS's remit and aim is to give advice and advocate for the disabled community. We exist to ensure disabled people are considered in all transport issues. We aim for transport to be affordable, available, and accessible for all. Every day, disabled people face extra challenges and barriers that can prevent travel, which we need to act upon urgently to redress if we want to achieve our mission of “leaving no one behind”.

We also need to ensure that disabled people’s needs and freedom of choice are at the heart of our just transition to net zero and across all transport policies to ensure we don’t design disabled people out and widen the mobility gap. We need to see the mobility gap close (the difference in choices available, travel patterns, and behaviors between disabled people and non-disabled people).

Regarding learning disabilities, neurodivergent, and autistic people, we note some of the following barriers:

  • Hidden disabilities facing stereotypes and discrimination from staff and other passengers.
  • More likely to be exposed to disability hate crime.
  • Less confident to travel independently with a scarcity of travel training opportunities.
  • Bright lights, noises, busyness.
  • Needing to pay to use toilets and changing spaces.
  • Not all conditions meet criteria for the blue badge, yet many barriers are still faced.
  • Access to resources to regulate.
  • Not knowing if there is a safe quiet space in any stations.
  • We note that it is not just people with learning disabilities who struggle to plan journeys and cope with change – this also is an issue of concern for neurodivergent and autistic people. In addition, neurodivergence is a life-long condition.

The rate of hate crime for disabled passengers is unacceptable, and this needs to be redressed for disabled passengers to be confident in using transport.

We support proposals 1 and 2 and believe they should be extended to all disabled passengers.

We are glad to see the work that MACS inputs into cited here. However, we are sadly not seeing delivery at an acceptable rate. These principles are not a lived reality for disabled people. We need to see actions and feel the benefit of the strategies in daily life. There is an ‘enforcement gap’ – we believe that enforcement powers for 1 and 2 need to be included on the face of the Bill. Even if actions are mandatory, how do we make actions accountable?

We need to remain conscious of the “implementation gap” and produce and use better information and data to evidence that policy outcomes are delivered, driving progress, reducing inequalities and for transport – “reducing the mobility gap”.

We believe NTS should require a commitment to how it is going to meet the aim of ‘reducing the mobility gap’ for disabled passengers, including people with learning disabilities, learning difficulties, neurodivergent people, and autistic people.

Also, Regional Transport Partnerships Annual Reports should have to report on how they are ‘closing the mobility gap’ in their areas, including for people with learning disabilities, people with learning difficulties, autistic people, and neurodivergent people. This also needs to form part of their Equality Outcome Reports, linking back to the legal duty (as duty holders) under the Public Sector Equality Duty and the Scottish Specific Duties.

We note the important intent behind inclusive and accessible communications throughout various strategies and this Bill; however, we are not seeing this reflected in reality, including by many government bodies, i.e., in their consultation formats and information, in key reports that favor column layouts inaccessible to screen readers and many people.

More needs to be done to ensure these much-needed actions are delivered as soon as possible for disabled people.

Which of these proposals do you not agree with (if any)? Please tell us why

Views:

No specific proposals mentioned for disagreement.

Is there anything else that we should consider in relation to transport?

Views:

No additional considerations mentioned.