Learning/intellectual disability and autism: transformation plan

Mental Health, Health and Social Care

Mental Health

Autistic people and people with a learning/intellectual disability have told us that their mental health has been severely affected by the pandemic and that they can be denied mental health services as a direct result of being autistic or having a learning/intellectual disability. They feel they are not understood by professionals and are more likely to have had a negative experience in mental health services.

Being isolated in the house for long periods increases our anxiety and has a negative effect on our mental health

What we will do

Action 3 - The delivery of the Mental Health Transition and Recovery Plan will support improvement in population–level mental health services. We will explore how these services can better meet the needs of autistic people and people with a learning/intellectual disability.

Action 4 - We will promote the Mental Health resources being developed by PAMIS to better support people with Profound and multiple learning disability (PMLD) to explore their emotions and a resource developed by Glasgow University to better support people with learning/intellectual disabilities to cope with anxiety.

Health

People with learning/intellectual disabilities have some of the poorest health of any group in Scotland and die on average twenty years earlier than the rest of the population.^[8] This year, new evidence was published by the Scottish Learning Disabilities Observatory that tells us children with learning/intellectual disabilities are at least 12 times more likely than other children to die in childhood and adults with learning/intellectual disabilities are twice as likely to die from preventable illnesses.^[9]

It is not acceptable for people with a learning/intellectual disability to suffer poorer health and shorter lives and in some cases be delayed in hospital. We must do everything we can together to change this.

We are also told that autistic people have poorer health outcomes. We know less about the their health needs and need to learn more about how their health needs can be improved.

"We are too afraid to go to GP or hospital during COVID"

What we will do

Action 5 - We have ensured that the recommendations of the Coming Home Report have been fully considered in the work of the short life working group (SLWG) set up to improve delayed discharge and reduce inappropriate out of area placements for people with complex needs. A final report of the SLWG is currently being drafted and mechanisms will be put in place to deliver on its recommendations. One of the groups' early recommendations on a "Community Living Change Fund" of £20m has been announced and allocated to Integration Authorities. There are three main expectations from the Community Living Change Fund: to facilitate the discharge of long-stay hospital patients who have been delayed in their discharge; to bring home people with learning/intellectual disabilities who have been inappropriately placed outside of Scotland; and, to redesign current service provision to ensure such people do not face prolonged hospitalisation or unnecessary placement outside of Scotland going forward. Recognising the complexity of designing, commissioning and arranging services, and often bespoke newly built accommodation, we have allowed three years for the funding to be used and the outcomes to be achieved.

Action 6 - We will pilot a Nurse/AHP Consultant for Autism and learning/intellectual disabilities (learning from best practice from Alzheimer's Scotland Nurse Consultants) aimed at improving both mental health and hospital care of autistic people and/or people with learning/intellectual disabilities.

Action 7 - We will work with the Scottish Learning Disability Observatory^[10] to further understand health inequalities and to identify specific predictors of mortality and actions that will improve health outcomes for people with learning/intellectual disabilities of all ages.

Action 8 - The Scottish Government, Aberdeenshire Health & Social Care Partnership and partners will take forward a pilot of health checks for people with learning/intellectual disabilities to address health inequalities and early deaths.

Action 9 - The Scottish Government and partners including NHS Boards, the Scottish Commission for people with Learning Disabilities and the Scottish Learning Disability Observatory will deliver improvements in data collection and access to data to improve the visibility of these populations and consider the development of a Key Performance Indicator to monitor improvements.

Action 10 - We and our partners have established a Gender Based Violence Steering Group and will develop an action plan to reduce incidence of violence and empower women with learning/intellectual disabilities and/or autistic women to have safe and loving relationships.

Action 11 - We will continue to work with the National Autism Improvement Team (NAIT) to support autism and ADHD diagnostic services through improvement practice and explore with Healthcare Improvement Scotland (HIS) the development of a Key Performance Indicator to monitor diagnostic services across Scotland.

Action 12 - We will explore establishing:

A - mandatory autism training for all NHS staff.
B - mandatory learning/intellectual disability training for all NHS staff.

Covid has highlighted the need for Autism Post diagnostic support which is focussed on the kind of social and community support people need. We want to ensure that autistic people have equality in access to post diagnostic support. The Scottish Government has worked with autism charities to put together and pilot post diagnostic support and this was announced in October 2020.

Action 13 - As committed to in the Programme for Government we will deliver a 6 month pilot national post diagnostic support service for autistic people from December 2020. We will work collaboratively with national autism charities, autistic led charities and organisations and evaluate the outcomes of the pilot post May 2021.

Action 14 – We will explore the barriers to autistic people living a healthier life.

Social Care and Support

It is important to have support to live your daily lives in your communities. People who have learning/intellectual disabilities and autistic people have told us about the importance of having support to make their own decisions and to make their voices heard. Being part of networks which empower independent living can help them to do that. The support people are offered can vary considerably.

The support I need stopped because of the restrictions. I struggle to cope on my own.

What we will do

Action 15 - The Scottish Government will ensure that people with lived experience are listened to and better supported to initiate and influence programmes and initiatives which will impact on their lives. We want to ensure that those voices are part of discussions from the outset. This will include helping to support engagement with the issues set out in the review of adult social care, the Social Renewal Advisory Board and National Taskforce on Human Rights. This provides opportunities to ensure that social care reform and the transformation of social care services are focussed on reducing inequalities and better meet the needs of our population.

Action 16 - The Scottish Government continues to work with Inspiring Scotland 'Support in the Right Direction' and other partners to ensure that more autistic people and people with learning/intellectual disabilities access their rights under the Social Work (Self Directed Support) (Scotland) Act 2013 to direct their own support.

Action 17 - In May 2020, the Scottish Government, Social Work Scotland and COSLA produced COVID-19: Guidance on Self-Directed Support Option 1 and Option 2. The guidance is for Local Authority and Health and Social Care Partnership staff who assess, approve and administer social work and social care and support (including carer support), and approve Self-directed Support (SDS) budgets and is relevant only for the duration of the COVID-19 pandemic period.It aims to support local social care systems and services to continue to respond appropriately and flexibly, to enable service users to meet their outcomes during the pandemic.We will work with partners and individuals to understand the impact of this change. The Scottish Government is also working with Healthcare Improvement Scotland (iHub) and HSCPs on a learning disability collaborative to maximise partnership working on community led solutions to new models of day support for people with learning/intellectual disabilities.

Action 18 - The Scottish Government has launched a national carers marketing campaign to help more people recognise when they are in a caring role and to access the support available under the Carers (Scotland) Act 2016. We will help make sure that people know about this support.

Action 19 - The Scottish Government will explore asset based community development models to create better outcomes for autistic people and people who have learning/intellectual disabilities and their family carers.