The North West Regional Forum + National Conference
2020 Vision – Moving Forward Together
Introduction
On 25 – 27 February we welcomed 250+ delegates and 40+ day delegates with learning disabilities, autism or both for 3 days to the Grand Hotel in Blackpool and 50+ 'bosses' to come and listen on the final day.
Learning Disability England again agreed to work in partnership to help us run their National Self-Advocacy Convention alongside ours.
Before the conference we carried out an accessible, on-line survey of self-advocates to find out what they thought had gone well over the last 10 years and what they wanted to see improved in the future. A total of 87 self-advocates completed this survey during the few weeks leading up to the conference.
During the conference participants were asked to complete ‘action planning’ posters around key themes during the first two days. On the final day these collective action plans were presented to the bosses. The posters were a uniformed approach to gathering as much information from the keynote presentations and workshops. They invited self-advocates to consider the following in relation to their key theme:
What is the mission we wish to achieve?
What are the values we care about?
What is our collective vision?
Can we share some great examples of what you have done or have heard about?
Who will we share this information with?
What are people’s experiences of the challenges that get in the way?
What action will we take to keep moving forward?
This report summarises the information we have gathered from both the survey and the posters.
Bespoke Commissioning
The vision for bespoke commissioning was around personalisation for everyone who wants it. Self-advocates want more choice and control over the services they receive through co-production. Actions to be taken forward include:
Developing skills around planning, documenting, testing, adjusting, checking, training and reviewing.
Self-advocates need to know who commissioners are.
Personalisation should be actively promoted.
Autism
The vision is people with Autism being respected, accepted, treated as human beings and having the same opportunities in education and work. Everyone will live in the community with good quality support. Actions to be taken forward include:
Help people to understand how to do co-production.
Engage and grow self-advocacy and peer advocacy.
Challenge professionals.
Children and Young People
In the online survey only 3 out of 10 self-advocates said it has got easier to get on training or college courses. Their top issue around education and training was more choice of courses.
The vision was a much improved service for children and young people, with more educational opportunities and more youth clubs and places to go. Actions to be taken forward include:
Involving children and young people in the conference.
Giving families hope by showing them case studies where everything is working well.
Developing support with friendships and relationships.
Strategic Leadership
In the online survey 9 out of 10 self-advocates said self-advocacy has got stronger and the best thing about it was being part of a self-advocacy group.
The vision around strategic leadership is to have people with learning disabilities / Autism in leadership roles and have influence as trainers and decision makers. Self-advocates will be included in politics and have regular meetings with senior leaders. There should be training for self-advocates to become leaders themselves. Actions to be taken forward include:
Gather evidence on the impact of having self-advocates in leadership roles.
Build connections outside the learning disability world e.g. research.
Belonging
In the online survey:
6 out of 10 self-advocates said it was now easier to have relationships and the one thing which had helped most was more things to do.
Half of self-advocates said they were less lonely and that self-advocacy stopped them from being lonely.
The vision around belonging was for everyone to live the life they want and for people in support roles to help them connect. Actions to be taken forward include:
More training about sex and relationships for everyone.
Need to figure out how commissioners can help people to make connections.
Keep talking about sex and relationships.
Advocacy
In the online survey 8 out of 10 people said it has got better to make our own choices and having freedom and self-advocacy had helped them the most with making decisions.
The vision for advocacy is that self-advocacy and well-trained, paid advocates should be available everywhere. Advocacy organisations should be run by self-advocates and support people with speaking up and having a voice. Also there should be an international self-advocacy conference in the USA in 2024. Actions for self-advocacy groups to take forward include:
Groups need to work together more and join the self-advocacy coalition.
Contact their local council or MP
Go on the BBC or The One Show.
Criminal Justice System
In the online survey 3 out of 10 people thought they were at less risk from crime. Their top issue around crime was more police officers.
The vision is for people not to be held in prisons or secure hospitals unnecessarily because we have better community services. Workers in the Criminal Justice System will have a better understanding and awareness of people with learning disabilities and/or Autism. Each region will have a health and criminal justice plan and there will be less hate crime. There will be better support for both offenders and victims with learning disabilities and/or Autism. Actions to be taken forward include:
More Safety in Town projects.
More education about people with learning disabilities and/or Autism in schools.
More registered Learning Disability Nurses in prisons.
More accessible offender programmes.
Early intervention.
Home
In the online survey 6 out of 10 self-advocates said it had got easier to get good homes – their top priority was more adapted houses.
The vision for housing is for everyone to be supported in a home of their own in the area of their choice with the right support. Actions to be taken forward include:
A campaign about housing options.
Training for housing officers.
People involved in local housing plans.
Work
In the online survey 6 out of 10 self-advocates said it had not easier to get a job. Their top issue around getting a job was the need for more support to work.
The vision for work is an equal opportunity to both get a job and get promoted. The right support to get a job should be available, including supported internships for everyone regardless of age. Employers should have a better understanding of learning disability and Autism and support accessible processes for applying for jobs (e.g. easy read application forms). The government’s Access to Work scheme should be reformed. Actions to be taken forward include:
A national day of action.
A new national forum and national campaigns group.
A kite mark for inclusive employers.
Pathways must employ more self-advocates as Experts by Experience for Care and Treatment Reviews.
North West Regional Forum should have a separate employment sub-group.
Share these action plans in your local area.
Access
In the online survey:
Only half of self-advocates said it had got easier to get information they can understand. Most said what helped them was more information in easy read.
6 out of 10 self-advocates said buildings and services have got more accessible.
Workforce
In the online survey only 4 out of ten people said it had got easier to get social care support. Self-advocates’ top issue around social care is getting good staff.
The vision is for people who are paid to provide support to have the right skills and attitude to make their job work for people with a learning disability, Autistic people and everyone. Actions to be taken forward include:
Demand that systems are needs-led.
Push awareness / equality training for staff who work outside health and social care e.g. transport, leisure, police, shops etc.
Health
In the online survey:
7 out of 10 said their physical health was better and the thing that had helped them most is more exercise.
Only 4 in 10 self-advocates said their mental health had got better and the one thing which had helped most with this is more awareness.
8 out of 10 self-advocates said it is now easier to get health support and what had helped the most to improve this are Community Learning Disability Teams.
The vision is that people will live longer, healthier and happier lives and won’t die prematurely of preventable illnesses. Health outcomes for people with learning disabilities and/or Autism will be equal to the rest of the population. People will be empowered to understand their own health and speak up. Staff will be better trained and able to communicate in ways that people can understand. People should have equal access to all health services. There will be good mental health support so that people do not have to live in hospitals. Reasonable adjustments should be automatically made with easy read health information available. Actions to be taken forward include:
Support CCGs and health services to fully implement the new digital flag for reasonable adjustments.
CCGs should audit how the Accessible Information Standard is being implemented and make it clear that they expect everyone to provide accessible information.
Local authority contracts and care plans should provide support for people to attend health appointments.
Top Ten Issues
The self-advocates who completed the online survey were asked to name three big issues that they would like to see improved in the future. Here are their top ten responses:
Issue | No. of people |
Belonging and relationships | 27 |
Enough social care support | 22 |
Employment | 12 |
Access to transport | 11 |
Self-advocacy | 11 |
Access to housing | 10 |
Crime and hate crime | 6 |
Access to the built environment | 5 |
Homes not hospitals | 5 |
Mental health | 5 |
19th March 2020
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