Down Syndrome Act – UPDATE MAY 23
Disappointingly, despite reassurances from the Department of Health and Social Care that the DS Act would provide improvements in care for all those with genetic learning disabilities, we now understand that the guidance for the Down Syndrome Act will be written solely focusing on those with DS and will include measures to ensure its implementation.
We all know that we face a postcode lottery when it comes to local support services and service provision and that we do not all receive the same high level of care and support for our children as they are entitled to, often due to lack of resource.
We fear that the distribution and promotion of the Down Syndrome Act guidelines will adversely affect all those with learning disabilities as provision will likely be prioritised for those with Down Syndrome. We are working with other similar charities and Genetic Alliance in order to amplify our voice, but we urge you all to contact your MPs to raise this issue. Please find a draft template which you may find useful.