Learning Disabilities and Autism: Equality and Empowerment

Registration and Coffee in the Networking Area

Chair’s Opening Address

Keynote Address

• Debbie Ivanova, Deputy Chief Inspector of Adult Social Care, Care Quality Commission (CQC) (confirmed)

Unfortunately, we’ve seen too many times over the past few years that people with a learning disability and autistic people are not getting access to the right care.  Despite significant national attention on this issues, over 2,000 people remain in hospital which is not in line with best practice.  In this session, we’ll talk about how the CQC have put in place a new role to focus on implementing changes to our regulation specifically for people with a learning disability and those that care for autistic people.

Join us to understand CQC’s key work areas in ensuring the right services are regulated and registered, that we are responding to risks swiftly and taking appropriate action and understanding pathways and healthcare.

• Joanne Silkstone, Learning and Development Manager, United Response (confirmed)

United Response’s ‘Am I Your Problem?’ campaign challenges the indifference, discrimination and sometimes outright hostility shown towards people with learning disabilities or autism. The charity polled 150+ people it supported about their experiences within different social settings; the widespread prejudices and, in some instances, malice they face is often not acknowledged, recognised or reported as a hate crime. Joanne will be co-presenting alongside a person born with learning disabilities who will share their personal experience(s) of discrimination.

Headline Sponsor

Question and Answer Session

Coffee in the Networking Area

• Sarah Egley, Assistant Director Improvement, Innovation and Assurance, Derbyshire Community Health Services NHS Trust (confirmed)
• Tracey Brailsford, Clinical Effectiveness Lead & Operational Quality Support Team Lead, Derbyshire Community Health Services NHS Foundation Trust (confirmed)

Sarah and Tracey will present on their experience of implementing the Learning Disabilities and Autism NHS Standards into an NHS Trust; providing delegates with a pathway for doing so themselves in a manner that ensures meaningful collaboration with carers and people who have a learning disability or autism.

Case Study

This slot is reserved for organisations looking to engage delegates with services and opportunities that compliment conference presentation and discussion panel topics. If you're interested in delivering a Case Study, contact us on 0161 376 9007.

• Jill Thorburn, Director, Mind Of My Own (confirmed)

All children should be able to give voice to their lived experience - this is particularly important for younger children, even more so for those with a learning disability. Express is a co-designed, innovative and user-friendly app from Mind of My Own that helps children as young as two and those with additional needs express their views, wishes and feelings in a fun, digital way that’s easy for workers to understand and evidence. 

Question and Answer Session

Lunch in the Networking Area

We'll be working with venues to ensure lunch at our events is as delicious as ever and caters for a range of dietary preferences - whilst being served in a safe and seamless manner. Some of the new measures we will be introducing to this effect are:

• One-way queuing systems with safe distancing in operation.
• Individual snacking bags containing fruit, trail mix and sweets provided on arrival - this will prevent people mixing around snack bars during networking breaks.
• Individually portioned dishes and pre-sealed cutlery will be served at collection points.  

Where possible, we will request food is sourced locally to reduce food miles, use seasonal vegetables, red tractor certified meat and eggs from free range hens.

Chair’s Afternoon Address

• Richard Everitt, Programme Manager: Optical Services Commissioning, NHS England and NHS Improvement (confirmed)

Working closely with SeeAbility and experts from across the optical learning disability and SEND profession, NHS England has developed a new service that will transform eye care for children with learning disabilities and autism within a special school environment. This group of children are 28x more likely to have serious sight issues in comparison with the general population and approximately one third of them will need glasses. However, despite their greater need, research highlights that only 10% of these children have accessed services at a community optician; astonishingly, almost half (44%) have never received a sight test or any other kind of eyecare service.

NHS England's Special School Eyecare Programme aims to provide a comprehensive eyecare service that goes beyond the provision of sight tests alone. For example, children who require glasses will have them dispensed on the school premises, avoiding the need to redeem optical vouchers in optometry practices; and every child will receive a report written in plain English for parents and teachers that explains what the child can see, with advice and guidance on the strategies that can be adopted in the classroom and at home to improve the child’s level of engagement with their immediate environment. These reports will also feed into the child’s Education, Health and Care Plans.

Case Study

This slot is reserved for organisations looking to engage delegates with services and opportunities that compliment conference presentation and discussion panel topics. If you're interested in delivering a Case Study, contact us on 0161 376 9007.

The report Deaths of People Identified as Having Learning Disabilities with COVID-19 in England in the Spring of 2020 from Public Health England examined data from the English Learning Disabilities Mortality Review and NHS England's COVID-19 Patient Notification System which records deaths in hospital settings. The report's findings were unsettling, and included: 

• The death rate of people with a learning disability from COVID-19 was up to six times higher than that of the general population during the first wave of the pandemic (451 per 100,000 people registered as having a learning disability died with COVID-19 between March 21st and June 5th); with some experts estimating that the rate may be as high as 692 per 100,000 - given not all deaths of people with learning disabilities are registered on these databases.
• The mortality rate for people aged 18 - 34 with learning disabilities was 30 times higher than the rate in the same age group without disabilities.
• People with a learning disabilities are likely to have had difficulties recognising symptoms of COVID-19 or following government advice as it pertains to testing, self-isolation, social distancing and infection prevention/control. 
• Carers may find it difficult to recognise the early onset of COVID-19 symptoms in a person with a learning disability or autism if communication channels are poor.

This presentation will cover lessons learnt from the initial stages of the pandemic and spotlight the pre-existing, preventable health inequalities that have contributed to avoidable deaths in this cohort during the pandemic.

Question and Answer Session

Afternoon Refreshment Break

This presentation will explore major reform(s) of the Mental Health Act to reduce the number of people with learning disabilities and autism being sectioned. In its new white paper Reforming the Mental Health Act, the government cites that a person will only be detained if a 'co-occurring mental health condition is identified'. The presentation will cover a number of proposed changes to the Act, including:

• The introduction of 'Advance Choice Documents' to enable people to express their wishes and preferences pertaining to their care whilst they are well, before the need arises for them to go into hospital.
• Implementing the right for an individual to choose a 'Nominated Person' who is best placed to look after their interests under the Act if they aren't able to do so themselves.
• Piloting culturally appropriate advocates so patients from all ethnic backgrounds can be better supported to voice their individual needs.
• Expanding the remit of 'Independent Mental Health Advocates' to offer increased support and representation to every patient detained under the Act.

• Sue Stevenson, Chief Operating Officer, Healthwatch Cumbria (confirmed)

This Healthwatch Cumbria (HWC) project explores the extent to which service provision for people with learning difficulties supported them to have a “good” life. Five surveys were used to generate feedback from commissioners, providers, social workers, families/carers and people with learning disabilities. The recommendations are being delivered through the Cumbria Learning Disability and Autism Partnership Board.

Question & Answer Session

Chair’s Closing Remarks and Event Close