Learning Disability Today
Supporting professionals working in learning disability and autism services

Government launches call for evidence to shape new Down’s syndrome guidance

The government is seeking views from people with Down’s syndrome, their families, professionals and charities to shape new guidance that will be implemented as a result of the Down Syndrome Act.

The information shared will be used to inform guidance for authorities to follow, ensuring that people with Down’s syndrome receive the care and support they need to live longer, happier and healthier lives.

Improving access to healthcare, housing and education

While people with Down’s syndrome are living longer than they ever have before, they are still at an increased risk of certain medical conditions including congenital heart disease, early onset dementia or hearing and visual impairment. Tailored support is therefore needed to ensure that additional health needs are met.

There is also a lack of supported housing for people with Down’ syndrome, and education and early years support does not always meet their needs and can be difficult to access. The new guidance will address this gap, ensuring improved access to support including speech and language therapy, additional educational, housing and care support.

The government is asking people with lived experience about what support is currently available and what barriers remain. You will be asked what level of support is needed to ensure personal care, community engagement and relationships can be maintained.

The consultation will also ask what is needed to ensure that people with Down’s syndrome can live as independently as possible with support in the community.

The guidance will this “help public authorities to put the right support in place”

Minister for Care and Mental Health Gillian Keegan said: “I know with the right support people with Down’s syndrome can live full and independent lives.

“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.”

While the call for evidence is focused on Down’s syndrome, those with a different genetic condition, as well as their families and carers, are invited to contribute. In this way, the government hopes to test whether the guidance could benefit other people too.

The consultation will run for 16 weeks, closing on 8 November 2022.

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