An alert from Genetic Alliance UK warned us about the potential impact of new legislation called the Down Syndrome Act.

It raised the prospect of people with Down syndrome being treated better than others with similar learning difficulties, caused by other condtions such as WAGR.

Following this, we and many people who know someone with WAGR wanted to air concerns about it in a consultation run by Departmetn for Health and Social Care (DHSC).

The act will see guidance produced about supporting people with Down syndrome covering:

• National Health Service
• social care
• education and youth offending
• housing

The key concern is that if the guidance does not capture all of the overlaps in needs that people with Down syndrome have with people who have other conditions such as WAGR 11p deletion syndrome, then a hierarchy of access could be created, to already scarcely available services.

We passed these details on to the International WAGR Syndrome Association (IWSA). They and several other organizations voiced worries:

“Why single out the Down Syndrome for these improvements, when many other disorders have similar needs and those individuals certainly deserve the same?”

The UK government requested input via a call for evidence to help draft the guidance. Anyone, such as UK relatives of and adults with WAGR, could help avoid them being disadvantaged by using this to make their views known. IWSA encouraged their members to do this and also sent in their own submission expressing their concerns.

Trustee Andy wrote a response on behalf of Aniridia Network insisting that the guidance must be to treat people with learning difficulties equally.

Read more about the Down Syndrome Act and the Genetic Alliance position statement.

DHSC are now analysing the responses and Genetic Alliance UK feel there will likely be a public consultation once the draft guidance is ready at some point in 2023. They, Aniridia Network and IWSA will be sure to keep us members updated through our newsletters, social media and website.