The Down Syndrome Act gained Royal Assent on 28th April 2022, which means it is now law. To learn more about the Act and what it might mean, read on for more.
Background
Dr Liam Fox MP introduced the Down Syndrome Bill (the name a proposed Act is called before it becomes law) in 2021. He hoped that it would achieve three objectives.
- To help reduce the stigma of Down Syndrome
- To improve services to better meet the needs of people who have Down Syndrome
- To look ahead at how care will be provided for people with Down Syndrome when they outlive their parents, which, due to increases in life expectancy, is going to occur.
What The Act Says
The Act requires the Secretary of State for Health to issue ‘statutory guidance’ about the services which should be provided in England & Wales for Downs Syndrome people. This guidance will not force councils or the NHS to provide services and service providers will not have to follow it exactly. All that service providers will need to do is show that they have paid ‘due regard’ to the guidance. In practice, this means that they must read and consider the guidance, but they can do something different from the guidance if they feel they have a good reason to do so.
The Secretary of State for Health is now consulting appropriate organisations about what should be put in the guidance. These are organisations who have knowledge and experience in working with, and supporting people with Down Syndrome, such as the Down Syndrome Association. The Government does not have to do what these organisations ask them to do, but they do have to read what organisations think and ask for.
What Services Are Affected By The Act?
The Act will cover the following services and providers.
- Health providers – this covers both community services often known as primary care and the full range of hospitals and inpatient medical services
- Social Care and Housing providers – this includes all types of councils: County, District, Borough and Councils related to particular areas such as in London.
- Education – this includes Schools, Further Education establishments, Academies, Pupil Referral Units, Youth Offending Teams, and People in charge of youth accommodation.
How Will This Impact The Lives Of People With Down Syndrome?
The statutory guidance issued under the Act might make a big difference to the lives of Downs Syndrome people IF the Government issue strong guidance and IF service providers then follow it. The Act does not provide any more money to pay for services, so many service providers will find it difficult to comply with the guidance even if they want to. It is too early to say.
Why Only Downs Syndrome?
Many people question why the Act only applies to people with Down Syndrome. They feel (as BuDs does) that the new statutory guidance should apply to all people who have a learning disability. To counter this argument, other people feel that, although not ideal, the Act is a good start and could be amended in the future to cover all learning disabilities.
BuDS’ Neurodiversity and Learning Disability Project
BuDS has a project focusing on people with Neurodiversity and Learning Disability and the services provided for them in Buckinghamshire. If you would like to join the project, please contact volunteering@buds.org.uk.
