- Government launches call for evidence to ensure better access
to health, education, social care and housing for people with
Down’s syndrome
- People with Down’s syndrome, families, professionals and
charities are invited to share their experiences and expertise
which will be used to shape new guidance
- Life expectancy has increased from 13 to almost 60 within a
generation and services are needed to support the more than
40,000 people with Down’s syndrome and their families
People with Down’s syndrome, their families, professionals and
charities are being invited to answer the government’s call for
evidence to shape new guidance for authorities to follow.
The guidance will help to ensure those with Down’s syndrome
receive the care and support they need to live longer, happier
and healthier lives.
People with Down’s syndrome have seen their life expectancy
increase from around 13 to almost 60 within a generation so
tailored support is required to meet additional health,
education, care and housing needs.
Minister for Care and Mental Health 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.”
The Down Syndrome Act, supported by the government and MP, requires the Health and Social
Care Secretary to issue guidance on how to meet the needs of
people with Down’s syndrome.
Authorities including the NHS, health commissioners and
Integrated Care Boards - who will also appoint a named lead to
oversee implementation - will then be required to follow the
guidance.
People with Down’s syndrome are at an increased risk of certain
medical conditions - such as congenital heart disease, early
onset dementia or hearing and visual impairment. Education and
early years support may not always meet needs and can be
difficult to access and there is not enough suitable supported
housing.
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, housing and care
support.
Although legal duties and care frameworks already exist it can be
difficult to access services. This guidance will identify what is
needed and how it should be delivered.
The call for evidence will also investigate what support is
available and what barriers remain with regards to accessing
healthcare. In adult social care, questions will focus on the
levels of support available to ensure personal care, community
engagement and relationships can be maintained.
In housing everyone has the right to try and live as
independently as they wish in their own home so questions will
focus on what is needed to make this possible.
In education the call for evidence will link to the wider Special
Education Needs and Disabilities (SEND) and Alternative Provision
reforms.
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.
This call for evidence will run for a period of 16 weeks and is
open to everyone.
