The SMS Foundation UK has united with a group of eight charities, writing a letter to Dr. Liam Fox and requesting a meeting in response to the proposed Down Syndrome Bill. The charities are also pressing that the scope of the proposed Bill be broadened to include all people with rare chromosome and genetic disorders who share the same challenges as those living with Down syndrome.
The proposed bill has been seen as a positive step for the Down syndrome community and seeks to address current fragmented services across health and education. If successful, local authorities and social services will be required by law to take account of the specific needs of people with Down’s syndrome. The charities are concerned that the impact of this could lead to members of their communities missing out on or being denied services that are already very stretched. The charities are urging for a more inclusive approach to legislation, that is not diagnosis-led, and will support the needs of all people living with a learning disability.
The charities represented in the letter include Angleman UK, Cri du Chat Support Group, Genetic Alliance UK, Max Appeal, Prader-Willi Syndrome Association UK, Ring 20 Research and Support UK, SWAN UK, Unique, and The Smith-Magenis Syndrome Foundation UK.