In order to create new guidance for authorities to follow, the government is calling for testimony from people with Down’s syndrome, their families, professionals, and charities.
The recommendations will make sure people with Down syndrome have the assistance and care they require to live longer, happier, and healthier lives.
In order to satisfy their additional health, education, care, and housing demands, people with Down’s syndrome must get personalised support as their life expectancy has increased from 13 to roughly 60 in a generation.
Gillian Keegan, minister of care and mental health, said:
I am aware that persons with Down syndrome are capable of leading full and independent lives with the correct help.
To help organisations better understand how to provide adequate housing, education, and the finest health and social care support, we must collaborate.
Families must no longer struggle in silence, and this advice will assist government agencies in providing the appropriate assistance.
The government and Dr. Liam Fox, a member of parliament, support the Down Syndrome Act, which mandates that the Health and Social Care Secretary produce guidelines on how to fulfil the requirements of people with Down’s syndrome.
Authorities such as the NHS, health commissioners, and Integrated Care Boards will subsequently be compelled to abide by the advice.
These organisations will also name a named lead to supervise implementation.
Down’s syndrome patients are more likely to have illnesses such as congenital heart disease, early-onset dementia, and hearing and vision loss.
There isn’t enough acceptable assisted housing, and education and early years help may not always match needs and be difficult to access.
The updated guidelines will make it easier for persons with Down syndrome to get the support they require, which may include speech and language therapy as well as additional educational, housing, and care assistance.
Even though there are established legal obligations and care structures, getting services might be challenging.
What is required and how it should be delivered will be specified by this guidance.
The request for evidence will also look into what resources are available and what access to healthcare challenges still exist.
The levels of support provided to guarantee that personal care, community involvement, and relationships can be maintained will be the main topic of discussion in adult social care issues.
Questions will centre on what is required to make this happen because everyone has the right to strive to live as independently as they desire in their own home.
The request for evidence in the field of education will be connected to more general reforms involving Alternative Provision and Special Education Needs and Disabilities (SEND).
Will Quince, minister of school standards, said:
Our efforts to increase people’s prospects in this nation must be based on their experiences, which is vital.
I am aware of how crucial guidance can be in assisting with services to help people’s lives be improved through my talks with parents, professionals, and children with special educational needs and disabilities, especially those with Down syndrome.
To build on our efforts to make the SEND system better for kids and families throughout the nation, I urge anybody with an interest to weigh in on this call for evidence.
The request for information is concentrated on Down’s syndrome, but it will also determine whether other people can also gain from the recommendations.
The public is welcome to participate, as well as members of their families and caregivers who have a different genetic disease.
This 16-week request for evidence is open to everyone and will be open for that time.