People with learning disabilities – COVID-19 Support and Action Group
Wednesday 9th March 2022
Time: 12:30pm-2:30pm https://us06web.zoom.us/j/97471173675 Meeting ID: 974 7117 3675
1. Present
Andrew Jenny Firielle Sam Vicky Kweku
Apologies: Gary Phil
Raymond Olcay Simone
Peter
Lynn Chris Sarah
Vicky
2. Guest speaker: Neil Crowther
|
Andrew and Jenny welcomed Neil Crowther. Neil started by saying how divisive and difficult conversations and positions about the Down Syndrome Bill have become. |
1
|
The Bill came about through the National Down Syndrome policy group, set up in 2022, mainly by parents groups and existing campaign groups like Don't Screen Us Out and the Portsmouth Down Syndrome Association. A further group was established to gain the views of people with Down Syndrome about the wider work with the group. A new All Party Parliamentary Group was then set up, which these groups and people support, so they have a strong influence. The idea of the Bill happened by chance. MP Liam Fox had his name picked out of a ballot to put forward a Bill in Parliament. He chose the Down Syndrome Bill. So this was put forward without much discussion or consultation. The Bill originally had bigger ambitions than it has now. The inspiration was the Autism Act, which requires the Government to produce a strategy then tell public bodies how to implement the strategy in guidance. |
2
|
The Bill is now quite weak, as all it says is that public bodies should read guidance about how they should meet existing duties and that there should be a named person who is responsible for ensuring that public bodies are paying attention to this guidance (in relation to duties that already exist) on the new Integrated Care Boards. The Bill has been through the House of Commons and will be going through the second reading in the Lords this week. There may be more questions asked. For example why only people with Down Syndrome – what would be different about health and social care guidance for people with Down Syndrome? It focuses on a person’s diagnosis and condition – from the Disability Rights Movement and Social Model of Disability the focus should be the individual and their needs. It’s weak, unnecessary (guidance could be produced without a Bill), it’s become divisive. |
3
|
Some of the supporters of the Bill have their own campaigns, for example Heidi’s case in the High Court. Although they are separate they have merged – the same people support and organise both. Christian evangelical groups and right wing groups have connected with the broader issues around the Bill. The UN Special Rapporteur has warned that Disability Rights Groups need to be careful not to end up in allegiance with groups that want to undermine women’s rights about choosing what to do about their bodies. There is a danger that people are using the Downs Syndrome Bill to attack women’s rights to abortion. The attention around the Bill should not be about attacking women’s rights or taking rights away from women. Some of the people behind the Bill do not necessarily have the interests of people with Down Syndrome at their heart. |
4
|
There are a very small number of terminations that happen after 24 weeks, so it seems that the campaign is about abortion more broadly. Heidi’s case has gone to the Court of Appeal. It won’t be determined on the basis of discrimination but causes stigma and prejudice towards people with Down Syndrome. The definition of disability in the Equality Act is deficit based – having an impairment of health condition that means you can’t perform day to day activities. To receive support you have to demonstrate the things you can’t do not what you can do. It’s everywhere in our society. We hope that the Lords will pose questions such as, how will the guidance be co-produced with people with Down Syndrome – they weren’t involved in the writing of the Bill. We need to be clear that we do not want to undermine women’s rights as a result of campaigning |
5
|
for the rights of people with Down Syndrome. We also need to understand why it’s needed. If it becomes law then the Government will need to produce guidance. At that point we need to make sure people with Down Syndrome are involved. It’s looked like people have been involved but it’s been theatre. Are we making one disability more important than others? The Autism Bill hasn’t really improved things that much for people with autism. People with different disabilities or conditions will face different barriers. When we’ve promoted the rights of disabled people we need to acknowledge that we’ve actually forgotten lots of people – for example people with learning disabilities weren’t well represented in disability campaigning. |
6
Final comments:
In the case of the Autism Act, many people were struggling to get a diagnosis so they couldn’t access support. There doesn’t seem to be a case to justify a separate law for people with Down Syndrome.
Do councils need extra health and social care guidance about the needs of people with Down Syndrome (maybe education?).
The Bill doesn’t seem to be well thought through and hasn’t come from people with Down Syndrome – it puts their condition right up front as their primary need; a backward step
Does this mean we need to have a Bill on every single issue?
Liam Fox said the reason for the Bill is that people are living longer and need more support – this is about the lack of provision and support not specifically about Down Syndrome but general health and social care problems and underfunding. The arguments for the Bill are very weak – but it has given some people a number of photo opportunities!
The Government has said this does not give people any additional rights or preferential treatment – so why does this need to be in law.
There’s talk that the guidance may include other people but this is unclear.
7
|
James Sanderson is our guest on 21st March. James Sanderson is the Director of Personalised Care at NHS England and NHS Improvement |
Next meeting:
Wednesday 23rd March 2022 12:30pm - 2:30pm
https://us06web.zoom.us/j/97471173675
Chris’s Art Work
8
Comments