Improving services for individuals with Down's Syndrome

MP Dr Liam Fox provided his support to a draft bill recently placed before parliament focusing on individuals with Down's Syndrome. He has been working on the bill with a Down's Syndrome Association in Portsmouth.

If the draft bill passes through parliament and receives royal assent, the Down's Syndrome Act will come into force. Its focus is on improving provision for those with Down's Syndrome which includes education, health, social care and employment.

The draft bill follows the Autism Act introduced in 2009 which focused on meeting the needs of adults with autistic spectrum conditions in England. If passed, the Down's Syndrome Act will cover all individuals (children and adults) with Down's Syndrome across the whole of the UK.

This is a hugely positive development as the Act will ensure the provision of support from a young age to adulthood, with provision and services being specifically tailored to meet the needs of individuals with Down's Syndrome. It will help to facilitate the transition from childhood to adulthood to enable access to the workplace and independence in their adult lives. Consideration will also be given to the long-term care that may be required by some individuals who will now outlive their parents due to advancements in life expectancy.

The Act will aim to educate and train professionals to improve the design and delivery of service provision to adults and children with Down's Syndrome.

Gurvinder Samra, education law specialist solicitor comments:

"The draft bill is extremely promising in theory and is a sign of hope for many individuals and their families, however, translating theory to practice can often lead to difficulties. These difficulties often arise from the interactions between different bodies within local government. They often struggle to offer a coherent, holistic service due to a lack of communication. Heath and education services have their own individual policies and budgets to adhere to, which can limit how much they are able to offer."

Gurvinder points out that this lack of co-ordination or sufficient resource to ensure delivery has already been seen with the implementation of Education, Health and Care plans (EHCP) introduced in 2014. Thousands of parents are currently appealing the content of their children's plans due to the limited provision offered. She adds:

"We have previously assisted young people with Down's Syndrome whose needs have not been addressed earlier. As young adults they struggle to gain their independence and acquire functional skills in respect of numeracy and literacy. We were able to assist by conducting Tribunal appeals and securing specialist independent placements funded by the local council. These young people now have the opportunity to acquire much needed skills to assist in adulthood. The proposed Act may help similar young people in the future through earlier intervention."

If the draft bill and subsequent Act fulfils its promise with the required funding and cohesive cooperation between services, then, it will mean that many will receive the early intervention they require to fulfil their potential in leading independent and inclusive lives.

Originally published by Shoosmiths, 28 June 2021

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