Learning/intellectual disability and autism: transformation plan

Purpose

We want this plan to shape supports, services and attitudes to ensure that the human rights of autistic people and people with learning/intellectual disabilities are respected and protected and that they are empowered to live their lives, the same as everyone else.

This plan is a partnership document with COSLA and a range of stakeholders. The Scottish Government and COSLA currently work in partnership with the third sector and others on our existing Keys to Life Strategy and the Scottish Strategy for Autism which end in 2023 and 2021.

However, our work over the last few months has been about sustaining and introducing additional ways to help autistic people and people with a learning/intellectual disability manage the changes and challenges brought by the pandemic. Throughout those months we have also learnt more about what has worked, what has been most difficult, about how people have managed and what they need. Some things remain the same and some have changed.

We don't know everything now. It will take time to fully understand the longer lasting impacts of the pandemic. We need to take some actions now based on what we have already learned and what people have told us. We also need to think about the future – we have come a long way over the last 20 years but there is more to do to ensure that autistic people and also people with a learning/intellectual disability can live their lives to the full and be a rightly valued and integrated part of our communities.

This has led us to this plan, which will run for two years, and:

• Describes the huge impact of the pandemic, including that some people feel alone, anxious and vulnerable;
• Takes on board what we have learned already from your experiences of life during the pandemic;
• Sets out what we have done to provide additional support during the pandemic;
• Sets out the outcomes people want as we understand them now, and actions we are taking or will take;
• Reinforces our shared human rights based and person-centred approach; and
• Starts the journey towards new strategies, as we promise to continue the conversations.

This plan talks about WHAT we need to do but we need to work together on HOW this will be achieved.

We will start to tackle this with new leadership groups that will embed at their heart the voices and experiences of the people who face these challenges every day.

Who is this plan for?

This plan is for autistic people and also people who have a learning/intellectual disability, and their family and carers. It is also for local authorities, integration authorities, NHS and third sector support providers. Therefore, this plan is for anyone with a role to play in implementing changes that improve outcomes for autistic people and people who have a learning/intellectual disability, and their family and carers.

Why a Joint plan?

This joint plan recognises that although the issues and solutions can and will be different there is also often common ground, including around the challenges and barriers people face. This includes things like stereotyping. This has been demonstrated clearly during the pandemic and stakeholders working together has been a strength.

We have brought our actions together into one plan but we are maintaining clear separate actions for both groups that reflect their differences. We are not advocating for joint actions or services at local level. We need to be clear this joint plan is not about treating this group as one population. We are very clear that person centred approaches need to be taken at all levels.

Our strategies remain separate.

We will take our lead from autistic people and people with a learning/intellectual disability about whether and how they want to join up this work as we move forward. We know that there are lots of different and strong views about this. We have engaged extensively with People First and Autistic led organisations to listen and hear their views about this. We have assured them we will seek to reconcile and respect those views. We commit to always listen, hear and respect people's views and for those voices to be at the centre of decision making going forward.

What is the population?

• Scotland's Census 2011 reported 26,349 people to have learning/intellectual disabilities, which is 0.5% of Scotland's population^[1].
• The Micro segmentation^[2] report established a robust national Scottish autism prevalence rate of 1.035% (103.5 per 10,000). This means there are approximately 44,133 autistic people in Scotland.
• 32.7%^[3] of autistic people also have a learning/intellectual disability.

How we have engaged and what people told us?

We held 12 virtual events that engaged directly with 225 individuals or organisations. We sought their views, experiences and responses to the draft plan. In addition, a dedicated email address was available in which 5 organisations or individuals responded. As part of this process, we ran engagement sessions with the National Strategy Groups across learning/intellectual disabilities and autism. The plan has also been considered by COSLA's Health and Social Care Board. Quotes which run through this plan are drawn from this engagement process.

How have people managed during the pandemic?

The COVID-19 pandemic has affected everyone in Scotland. Autistic people and people with learning/intellectual disability have faced a wide range of challenges because of the pandemic. Their response to these challenges has been remarkable. Many people have experienced the sudden loss of social and other supports and have had to adjust to new routines that have often been challenging. Carers and families have had to bear the weight of full-time care without some or all of the usual levels of external support. Equally remarkable has been the pace at which services which support people locally have adapted to the circumstances we have faced and continue to face. There has also been significant pressure on the people providing services. We have all had to face the reality of a situation which is likely to have long lasting economic, social and health impacts. This has tested everyone's resilience and will continue to do so.

Evidence from the last few months has shaped this plan

As we move forward, we must be ambitious to better secure the human rights of autistic people and also people with learning/intellectual disabilities to live as equal and valued members of Scottish society. We must ensure that those ambitions are matched with what we can achieve and with practical steps that will make a difference on a daily basis.

Many organisations rapidly adapted services to continue essential social care support to the most vulnerable in our society. There is a commitment to holding onto that innovation and good practice developed during the restrictions. Beyond service provision, there has also been an amazing community spirit and sense of unity across Scotland. We must build on this.

We have listened to the experiences we have heard about the changes in the lives of autistic people and people with a learning/intellectual disability and their family and carers during the pandemic. This plan reflects those voices and the consistent priorities raised. Here is some of what we heard:

Learning/Intellectual Disabilities

Further erosion of Human Rights

Healthcare and Social Care

• Procedures and regular physio cancelled
  "my physio stopped, and nobody can be trained to do it with or for me because of rules - really frustrating (as live 2mins from hospital), so I'm getting physically weaker"

• Fear of going to GP, or GP not providing a service
  " I can't get in touch with GP despite several ear infections, and now detrimental effect on hearing. My hearing aid is broken, and I can't get it fixed."
  "I don't like video calling with GP as they can't see everything"
  "We are too afraid to go to GP or hospital during COVID"

• Loss of services and respite
  "I can't get carers or train any new ones up because of restrictions"

"Citizens Advice is so busy that it can't pick up the calls, so we're missing benefit or grant deadline"

Mental Health

• Isolation, lack of anything meaningful to do
  "Losing independence and having to move back in with family, being a prisoner in own home – and being told what to do

• Loss of support
  "I can't access the counselling support that I used to get"

Fear of COVID Unemployment

• Lost job and no income
  "I'm furloughed and feeling very isolated"

• Fear about finding new work
  "There is too much competition, people with LD don't stand a chance"

Education

• Little contact

• No support for transition
  "I didn't get to finish school to go to college"
  "Shielding and sickness meant that I couldn't get the support I needed, new people didn't know me or what I needed

Digital Exclusion

• Lack of money, no data/ broadband, fear of how to use the technology
  "The gap between the people who are learning digital skills and the ones who are excluded is widening. This is going to be a problem."

Communication

• Confusion of the rules, and how many different types of information published
  "There are so many rules, I find them so confusing" "we need a consistent Easy Read format that people with LD can understand"

Autism

Further erosion of Human Rights

Health and Social Care/Support

"Support is only provided when crises point is reached"

Diagnosis

• People crying out for diagnosis and post-diagnosis care/ support
• gap in provision of services^[4]

Mental Health

• Fear of Covid
• Isolation
  "My biggest fear during this Pandemic is being arrested for having an Autistic meltdown. I used to be very active doing Munroe's, going to Uni and when the Pandemic hit I have been completely reclusive. I haven't been exercising because I don't want to go out in public."
  "Friends …(They're) losing skills they've gained over years like using public transport and going to a familiar place."

• Anxiety
  "It's the biggest issue with people I interact with. We are seeing significant depression spikes in a community which is routinely depressed anyway so it's a bad thing."

• Lack of autism informed mental health services, or understanding from professionals
  "Autistic people are being taken to hospital in handcuffs when distressed"
  "GPs blaming the mental health of people on their autism and so not providing support."

Employment

• Fear of furlough/ redundancy
  "The Autistic community seems the easiest to let go because they are the most challenging in the workplace."

• Fear of asking for reasonable adjustments
  "I struggle to ask for adjustments because I know I'm going to have to self-advocate. Support is lacking and I don't have the energy to fight for it."

Education

• Home-schooling - some flourished whilst it has/had serious negative impact for others
  "I have 2 Autistic kids both at Secondary school. During the pandemic one wasn't engaged with school but the other one thrived because he could work to his own timetable. The other one just couldn't get working at home, now back at school working but there has been no help to catch up on what was missed."

• Lack of understanding/ support of autistic children's needs
  "The school just thinks I'm being over-dramatic, they don't take me seriously, very patronising. They know I'm Autistic and they just use it as an excuse."

• No support for transitions
  "Covid-19 has removed transition support for children between primary and high school"

Communication

• Constant changing of rules
  "At the beginning all the changes and uncertainty, all the different rules all the time and it's happening again now. For a while I wasn't sure what was going on and then I'd get the hang of it and then it changes. On the radio, I'm not even sure what is English or Scottish advice."