The Government passed the Down’s Syndrome Act in April 2022. The aim was a good one - to improve support for people with Down’s syndrome by ensuring that public bodies give due regard to their needs. But hold on a minute! Why are we prioritising funding and resources for people with Down’s syndrome above all others, including people with genetic conditions such as PWS?
I want to say straight away that I think people with Down’s syndrome deserve to access the very best support and that nothing you read here should undermine that expectation. However, many individuals and organisations, including PWSA UK, agree with me when I say I have some serious concerns about the Act’s content and purpose. For instance, I think that the Act is:
1. Discriminatory.
By singling out people with Down's syndrome and forgetting people with different diagnoses or genetic conditions like PWS, the Act suggests preferential treatment for people with Down’s syndrome. Even if you think the Act is a good idea, surely you have to wonder if that approach is ethically sound and/or lawful?
2. Divisive. The Act comes with no additional funding attached, running the risk of creating a ‘hierarchy of disability’ against a background of limited resources. Anyone with a person with PWS in their life knows that resources are scarce. As soon as we start to say one group should have them, we know that others will not.
3. Backward step. By basing legislation on a diagnosis of Down’s syndrome, the Act is elevating diagnosis over an assessment of individual needs. That should worry anyone who believes in the social model of disability and thinks that medicalisation creates barriers which impact negatively on issues of equality, choice and independence, making life harder for disabled people.
4. Irrelevant. The Equality Act 2010 already cites the duties of authorities to assess all the needs of people to whom they provide support. Other Acts already have guidance-giving provisions; for example section 77 of the Children and Families Act 2014 in relation to the SEND Code of Practice or section 78 of the Care Act 2014 in relation to the care and support statutory guidance. If these Acts aren’t fit for purpose, then they should be amended for everyone. If not, what are we going to do? Create a new Act for every diagnosis and condition?!
The Government is now inviting people to participate in creating the guidance for the Act, including people with PWS, and their families and carers. You can go
here to have your say.
