Government opens consultation in relation to Down Syndrome Act 2022 guidance

The Department of Health and Social Care (“DHSC”) has opened a consultation, inviting people with Down’s syndrome, including their families, professionals and charities to share their experiences and expertise. The evidence gathered will help to develop the new Down Syndrome Act 2022 statutory guidance which authorities will follow.

The new legislation and supporting statutory guidance is in response to people with Down’s syndrome having their life expectancy increase from around 13 years old to 60 years old within a single generation. The impact of this means that there is now a growing need for greater tailored support to meet the prolonged health, education, care and housing needs of people with Down’s syndrome.

The consultation is open for a period of 16 weeks and closes on 8 November 2022.

What is the new guidance aiming to achieve?

The Down Syndrome Act 2022, supported by the DHSC and Dr Liam Fox MP, requires the Health and Social Care Secretary to issue guidance on how to meet the needs of people with Down’s syndrome. This extends to authorities including the NHS, health commissioners and integrated care boards who appoint a named lead to oversee implementation of the guidance.

Minister for Care and Mental Health Gillian Keegan said:

“We need to work together to help organisations better understand how to provide appropriate education, housing and the best possible health and social care support. It is time for families to stop struggling alone and this guidance will help public authorities to put the right support in place.”

The new guidance will help ensure improved access to the support that people with Down’s syndrome need, which can include speech and language therapy, additional educational, and  housing and care support. It is also important to increase awareness and education in relation to Down’s syndrome. This is because people with Down’s syndrome are at an increased risk of particular medical conditions such as congenital heart disease, early onset dementia, or hearing and visual impairments. Education and early years support currently may not always meet these needs and are difficult to access alongside there not being enough suitable supported housing.

The Governments consultation period will investigate what support is available for people with Down’s syndrome and what barriers remain with regards to accessing healthcare and support.

The call for evidence is focused on Down’s syndrome but will also test whether the guidance can benefit other people too. Those with a different genetic condition, as well as their families and carers are invited to contribute.

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