Scottish Parliament Cross Party Group on Learning Disability Easy Read Legacy Report 2016-2021 Produced for the CPG by ENABLE Scotland, Secretariat
1. Introduction. 2. Membership. 3. Background Information. 4. Keys to Life. 5. Coming Home. 6. Review of Mental Health (Care and Treatment) Act. 7. Education. 8. Social Care. 9. COVID-19 Pandemic. 10. Looking Ahead. ClicSummaryS to add text
Members:
- Jackie Baillie MSP (Convenor) (Labour) - Joan McAlpine MSP (Deputy Convenor) (SNP) - Jeremy Balfour MSP (Conservative) - Alex Cole-Hamilton MSP (LIberal Democrat) - Oliver Mundell MSP (Conservative) - Mark McDonald MSP (Independent) - Alison Johnstone MSP (Green) 1. Introduction. Cross Party Group on Learning Disability Easy Read Legacy Report
1. Introduction
This report is about the Cross-Party Group on Learning Disability in the Scottish Parliament.
This report will talk about all the things the Cross-Party Group has been able to do since 2016.
It will also look ahead to what it could do in the future.
The Cross-Party Group is important because it lets members of the Scottish Parliament and other people involved in important decision making the chance to hear from people with a learning disability and their carers. 2. Membership. Cross Party Group on Learning Disability Easy Read Legacy Report
2. Membership
The Cross-Party Group is made up of people from all the major political parties in Scotland.
It also is made up of 19 charities.
ENABLE Scotland is the group's secretariat.
A secretariat is the office or people responsible for the management of an organisation or group.
Scottish Labour's Jackie Baillie is the Convenor of the Cross-Party Group.
The Scottish Nationalist Party's (SNP) Joan McAlpine is the Vice Convenor.
A Convenor is someone whose job is to call people together for meetings of a committee and then chair the meetings. 3. Background Information. Cross Party Group on Learning Disability Easy Read Legacy Report
3. Background Information
The 2016 election of MSPs resulted in an SNP-led minority government.
A minority government is when the government is made up of MSPs from 1 party,.
It means that the party in government did not get more MSPs elected than the total elected from all the other parties.
A lot of the parliament's time was taken up with Brexit.
In March 2020, the Coronavirus pandemic started.
This changed everyone's lives.
It had a big impact on people with a learning disability. Cross Party Group on Learning Disability Easy Read Legacy Report
3. Background Information
It also had an impact on the families of people with a learning disability and their carers.
It also had an impact on the organisations that work with and support people with a learning disability.
Because of this the work of the Cross- Party Group on Learning Disability has never been more important.
The work it does can make life better for people with a learning disability in Scotland. Cross Party Group on Learning Disability Easy Read Legacy Report
3. Background Information
The next election of the Scottish Parliament is in May 2021.
After that election the Cross-Party group will keep working to improve the lives of people with a learning disability.
Keep reading to learn more about the different things the Cross-Party Group worked on from 2016 to 2021. 4. Keys to Life. Cross Party Group on Learning Disability Easy Read Legacy Report
4. Keys to Life
The Keys to Life is a 10 year strategy to make life better for people with a learning disability in Scotland.
It started in 2013.
When the Cross-Party Group met in 2016, the Keys to Life Plan was 3 years old.
It was made by the Scottish Government and COSLA.
COSLA is the group of local councils in Scotland – they come together to work on some things.
The Cross-Party Group has spoken about the Keys to Life lots over the last 5 years. Cross Party Group on Learning Disability Easy Read Legacy Report
4. Keys to Life
At first, we spoke about getting updates from the Government on what had been achieved since the strategy launched in 2013.
Scottish Government staff have attended the Group regularly.
They come along to give us updates about the Keys to Life and what it is achieving. Cross Party Group on Learning Disability Easy Read Legacy Report
4. Keys to Life
In 2019 a new Keys to Life plan for the years 2019 to 2021 was presented to the group.
It set out 4 key themes to focus on:
• Living • Learning • Working • Wellbeing
The group has continued to get updates about the Keys to Life. Cross Party Group on Learning Disability Easy Read Legacy Report
4. Keys to Life Some members of the CPG have felt that the Keys to Life has good ideas, but hasn’t always made a lot of changes happen.
Some members of the CPG think that other things need to be done to improve life for people who have a learning disability.
People First put forward a petition to the Scottish Parliament in January 2020.
It asked for a Bill of Rights for People who have a learning disability.
In September 2020 ENABLE Scotland spoke about a new campaign.
The campaign was asking for a Commissioner for People with Learning Disabilities and Autism. They would stand up for people with a learning disability and autism's rights.
They would be able to explain what needs to happen to make things in Scotland better for people with a learning disability and autism. Cross Party Group on Learning Disability Easy Read Legacy Report
4. Keys to Life
People in the Group have different ideas for how to make sure people with a learning disability have their rights upheld.
But everyone agrees that changes should be led by people who have a learning disability.
The Group has heard lots of evidence and presentations about what life is like for people who have a learning disability. In 2020 the Fraser of Allander Institure came to the group to update on a new year long research programme.
In September 2020 they told us about their report.
The group welcomed their work and thought it was high quality.
The group said they would support the Fraser of Allander Institure with their work. 5. Coming Home. Cross Party Group on Learning Disability Easy Read Legacy Report
5. Coming Home
The group said that 'where people live' was something important to look at in 2016 and 2017.
We spoke about it at lots of meetings.
At that time, Dr Anne MacDonald came to some meetings to update us on the work that she had been doing for the Scottish Government.
It was to look at people with a learning disability who were in hospital for too long.
It also looked at who had to move away from where they stay to get the support they need.
A report called 'Coming Home’ then came out in November 2018.
It said that some people with a learning disability had to move away from where they wanted to live to get support. It said that some other people were living in hospital. Cross Party Group on Learning Disability Easy Read Legacy Report
5. Coming Home
That went against what the government said should happen.
They said people should be able to live in their own home and the community they want to.
453 people with a learning disability were cared for away from where they lived.
79 of them had to move out of Scotland to get the support they needed.
The people didn't want to be where they were.
The group spoke about this lots.
Joan McAlpine – our deputy convenor - put a motion to parliament.
This is a way for MSPs to show they support an idea. Cross Party Group on Learning Disability Easy Read Legacy Report
5. Coming Home
The motion got support from MSPs from lots of political parties.
After the report came out the group wrote to the Cabinet Secretary for Health and Sport.
We asked what the Scottish Government would do to change what was happening to people and make it right.
In February 2021 the Review of Adult Social Care said that there should be a Scotland wide approach for making things right and that £20 million should be spent to make this happen. 6. Review of Mental Health (Care and Treatment) Act. Cross Party Group on Learning Disability Easy Read Legacy Report
6. Review of Mental Health (Care and Treatment) Act
The Independent Review of Learning Disabilities and Autism in the Mental Health Act happened during this 2016 – 2021 session of parliament too.
This was a significant achievement for the group.
The review happened because our Convenor put forward an amendment to the changes to the law - an idea - to parliament to have it.
The review was led by Andrew Rome.
It looked at the treatment of people with a learning disability and autism in the mental health act.
The review included the voices of many groups of people who were affected by the law. Cross Party Group on Learning Disability Easy Read Legacy Report
6. Review of Mental Health (Care and Treatment) Act
The review also included the voices of medical professionals.
It also included the voices of carers of people with a learning disability and people with autism.
The review suggested some changes to the law to make sure that people with a learning disability and autistic people had their human rights upheld.
The group spoke about the review a lot. We even invited people to attend our group and keep us up to date about how the review was going. Cross Party Group on Learning Disability Easy Read Legacy Report
6. Review of Mental Health (Care and Treatment) Act
The review was published in 2019.
It said there should be changes to the law to better protect people with a learning disability and people with autism.
The review showed that people with a learning disability and people with autism had been treated badly under the Mental Health Act.
They had been discriminated against.
This means they had been treated differently because of their learning disability or their autism.
The review said that changes should be made to the legal definiitions in the Act.
The Act should not refer to learning disability and autism as a mental disorder. Cross Party Group on Learning Disability Easy Read Legacy Report
6. Review of Mental Health (Care and Treatment) Act
They should be classed as disabilities.
This change would be a very important one.
Our Group first heard from Andrew Rome in May 2018.
He told us about the review and the plans for carrying it out. Cross Party Group on Learning Disability Easy Read Legacy Report
6. Review of Mental Health (Care and Treatment) Act
In May 2019 People First told us what they would like to see form the review.
In September 2019 Andrew Rome came to the meeting again.
We talked about the review and what it said should be changed.
Jackie Baillie told the group she thought the things the report said should change were very positive.
We also discussed the review and asked each other some questions about what we thought about it. Cross Party Group on Learning Disability Easy Read Legacy Report
6. Review of Mental Health (Care and Treatment) Act
Some people in the group said that we need to be careful when making changes like this.
They thought that it might change some things in a way they didn't mean to.
These things will need to be looked at as we continue to talk about what changes need to take place.
The Scottish Government is thinking about what to do now that the review is finished. They told us that they would make this decision in the next session of the Parliament. This is because they are waiting on another review of the Mental Health Act to be completed. 7. Education. Cross Party Group on Learning Disability Easy Read Legacy Report
7. Education
The group has talked about how children and young people with a learning disability are treated in school.
"In Safe Hands?" came about because of the campaiging of Beth Morrison.
Beth is a member of ENABLE Scotland's Scottish Council.
Beth worked with the Children’s Commissioner and gathered stories of 400 families whose children had been retained, excluded or secluded at school.
Beth's campaigining kicked off the efforts of the Children and Young People's Commssioner to investigate the issue. Cross Party Group on Learning Disability Easy Read Legacy Report
7. Education
They wrote a report called 'No Safe Place'.
It said that seclusion and restraint was carried out 2,674 times in Scottish schools in 2017 and 18.
The report found that seclusion and restraint were alarmingly common.
The report also said that it wasn't always reported.
Just 18 out of the 32 councils in Scotland recorded every incident of it. Cross Party Group on Learning Disability Easy Read Legacy Report
7. Education
ENABLE Scotland then launched a campaign 'In Safe Hands?" . It called for more action to make sure the ideas in the Commissioners report were actually going to happen.
ENABLE Scotland's 2016 campaign 'IncludED in the Main?!" also drew attention to what was happening in Scotland's schools.
The campaign said that because the incidents were not always reported then the numbers looked like they were low when actually they were not. Cross Party Group on Learning Disability Easy Read Legacy Report
7. Education
The group discussed seclusion and restraint.
We invited Nick Hobbs – the Head of Advice and Investigations for the Chilren and Young People's Commissioner Scotland to talk about their report 'No Safe Place".
Nick told us that not enough had happened since the report.
The group also heard from Jan Savage.
Jan is the Director of External Affairs at ENABLE Scotland.
Jan spoke to the group about ENABLE's 'In Safe Hands?' Campaign. Cross Party Group on Learning Disability Easy Read Legacy Report
7. Education
On the 25 February 2020 Jackie Baillie put a motion to the Scottish parliament to support the campaign's efforts.
The Scottish Government is working on new guidance for schools.
But we still don’t know who is responsible for regulating this in schools. 8. Social Care. Cross Party Group on Learning Disability Easy Read Legacy Report
8. Social Care
The group has looked at Social Care throughout the Parliament's session. We decided that it was a big issue for us.
The group supported the work of it's member LDAS.
They were campaiging to end care changing for people who have a learning disability.
In 2017 the group heard a presentation by Audit Scotland.
It said that not enough people were getting access to the options they have to direct their own support in Scotland. Cross Party Group on Learning Disability Easy Read Legacy Report
8. Social Care
It said this was the case even though the Social Care (Self Directed Support) Scotland Act 2013 said it should happen.
In December 2018 we spoke about Social Care at our meeting. We talked about better pay and conditions for social care staff.
In September 2020, a review iof social care was announced.
This happened because of the experience people had during the coronavirus pandemic. Cross Party Group on Learning Disability Easy Read Legacy Report
8. Social Care
The review looked at the human rights of people who receive support and how the system can be changed to make things better meet their needs.
Derek Feeley was in charge of the review.
He came to the group in December 2020.
The review listened to the views of the members of the Cross-Party group. Cross Party Group on Learning Disability Easy Read Legacy Report
8. Social Care
The report was finished in February 2021.
The review said there should be a National Care Service.
It said that people who access social care in Scotland should all be supported to access their human rights. Cross Party Group on Learning Disability Easy Read Legacy Report
8. Social Care
It said that there should be more done to help people with complex support needs live in the community.
It said these people should not be in hospitals or places far away from their home.
The next Scottish Government will be responsible for making sure these changes happen. 9. COVID-19 Pandemic. Cross Party Group on Learning Disability Easy Read Legacy Report
9. COVID-19 Pandemic
COVID-19 has changed the way we all live our lives.
It has changed life more for people who have a learning disability.
For some people the amount of support they are getting has gone down.
For some people the support they were getting has been removed. Cross Party Group on Learning Disability Easy Read Legacy Report
9. COVID-19 Pandemic
People have been more isolated.
They have missed out because they cannot use the technology we are all using to keep in touch.
During this time the voice of the group had been really important.
We have worked to make sure the people making decisions that affect people's lives think about people that have a learning disability. Cross Party Group on Learning Disability Easy Read Legacy Report
9. COVID-19 Pandemic
We have spoken about important things during the pandemic like:
• Testing • Mortality Data • Care Homes • Vaccinations Cross Party Group on Learning Disability Easy Read Legacy Report
9. COVID-19 Pandemic
During the pandemic the group has asked for information to show how COVID-19 affects people with a learning disability.
We have asked for information to show how it affects people with a learning disability compared to people without.
We also said that it took too long for this information to be found out.
In February 2021 the Scottish Learning Disabilities Observatory was able to tell us the following information. Cross Party Group on Learning Disability Easy Read Legacy Report
9. COVID-19 Pandemic
People who have a learning disability in Scotland are at greater risk of death.
They are 3 times more likely to die than people that don't have a learning disability from COVID-19.
People who have a learning disability in Scotland are at greater risk of getting infected with COVID-19.
They are 2 times more likely to get infected with COVID-19 that people that don't have a learning disability.
People who have a learning disability in Scotland are at greater risk of becoming seriously ill if they catch COVID-19.
They are 2 times more likely to end up in hospital than people that don't have a learning disability. Cross Party Group on Learning Disability Easy Read Legacy Report
9. COVID-19 Pandemic
This is on top of knowing that people with a learning disability die on average 20 years younger than people that do not have a learning disability.
It is also on top of knowing that children with a learning disability are 12 times more likely to die that children that do not have a learning disability from things that could be stopped. Cross Party Group on Learning Disability Easy Read Legacy Report
9. COVID-19 Pandemic
The Convenor of the group and Vice Convenor of the group wrote an urgent letter to the Government in February 2021.
The letter explained a number of important concerns people with a learning disability had.
These included:
• Equal access to the COVID-19 vaccine. • The use of DNACPR orders • What is happening to people's individual budgets • Questions about the progress for plans to support people who were found to need it in the Coming Home report. Cross Party Group on Learning Disability Easy Read Legacy Report
9. COVID-19 Pandemic
The First Minister then announced that everyone with a learning disability would get the COVID-19 vaccine as part of priority group 6.
This was something that many of us in the group has been arguing strongly for.
The group's Vice Convenor also put a Motion to parliament and asked questions about the fears our members had that services that have been paused during COVID might not start back up again. Cross Party Group on Learning Disability Easy Read Legacy Report
9. COVID-19 Pandemic
We end this term of Parliament with a debate led by our Convenor about how COVID has impacted people with a learning disability in Scotland.
People with a learing disability already face a lot of inequalities. The pandemic has made things worse for people.
During the next Term of Parliament we will need to keep speaking up for people with a learning disability in Scotland. 10. Looking Ahead. Cross Party Group on Learning Disability Easy Read Legacy Report
10. Looking Ahead
We do not know who will win the Scottish Parliament elections in May 2021.
Whatever the result the group will continue to work with everyone to make life better for people with a learning disability in Scotland.
COVID-19 and how we recover from it will be the most important thing we work on after the election. Cross Party Group on Learning Disability Easy Read Legacy Report
10. Looking Ahead
More people will be vaccinated against COVID-19.
We hope we will be getting more back to normal soon.
We will also have to stand up for people with a learning disability and make sure they are treated fairly during the COVID-19 recovery.
We are worried that services that have been stopped during the pandemic do not start back up. Cross Party Group on Learning Disability Easy Read Legacy Report
10. Looking Ahead
The next parliament will need the group to continue to work to make sure the government pays attention to the needs of people with a learning disability. Cross Party Group on Learning Disability Easy Read Legacy Report
10. Looking Ahead
This has been a really difficult time for everyone.
But the group has had more people take part than ever.
This is because now people can meet online and do not have to travel to Edinburgh.
We want to keep up the good work of the CPG.
We did well from 2016-2021 and we want to do more in the next Parliament Term. Cross Party Group on Learning Disability Easy Read Legacy Report
10. Looking Ahead
This report has shown some examples of the good work we do.
We have tried to show you a summary of what we have done over the last 5 years.
We have achieved a lot!
We have a lot more work to do! Cross Party Group on Learning Disability Easy Read Legacy Report
10. Looking Ahead
Key things for us to keep thinking about after the elections:
Rome Review The recommendations on the review of Learning Disability and Autism in the definition of 'mental disorder'.
Learning Disability and Autism Plan The next version of the Keys to Life plan from the Scottish Government. Cross Party Group on Learning Disability Easy Read Legacy Report
10. Looking Ahead
The Coming Home report What happens next with the £20m Community Change Fund.
Social Care What happens next with the recommendations of the Review of Adult Social Care
Health How to reduce health inequalities for people with a learning disability. Cross Party Group on Learning Disability Easy Read Legacy Report
10. Looking Ahead
Evidence: Learning from the Fraser of Allander research into what life is really like for people who have a learning disability in Scotland today.
Employment Better support for people who have learning disabilities, and their family carers
Day Services Ask the Health and Sport Committee to look at this in the next parliament session. Cross Party Group on Learning Disability Easy Read Legacy Report
10. Looking Ahead
Transitions Better support for people who have a learning disability as they move through different stages of their life.
Thank you!
Thank you to all of our members for all of your work on the Cross Party Group in 2016-2021!