Welcome to the first Intellectual Disability News recap on Finding Mary Fonsic. I’ll aim to do this once a month and hit the biggest recent ID news in the USA. Click here for the Plain Language Version of ID News September 2024.
Politics
Massachusetts Program trains migrants for much-needed DDS positions
The Lowell Sun reports on a new Massachusetts Department of Developmental Services internship to train migrants in Emergency Assistance Shelter system for direct-care positions within DDS. This is a win-win situation: it provides access to skilled work for new migrants and it addresses a critical need for more DDS direct-care workers in the state. It’s worth noting, however, that these positions typically have lower pay and poor benefits. We should continue to invest more in DDS services to improve the lives of both the service providers and recipients.
New act proposed to protect residents at residential facilities
Senators Mark Kelly and Kyrsten Sinema have proposed an act to increase transparency and accountability at residential facilities serving people with intellectual disabilities. The act, if adopted, would create an accessible website providing information on residential facilities, including results from the last three certification surveys, areas found to be deficient, and plans for improvement. It would also create an advisory committee (including members with intellectual disabilities) which would propose further steps that the government could take to prevent abuse and neglect at residential facilities. This is a good first step at both addressing problems within institutions and allowing recipients of residential services to make informed decisions about their care.
Donald Trump calls Vice President Kamala Harris “mentally disabled”
This has been reported on extensively, so I won’t belabor the point. Donald Trump’s continued disparagement of people with intellectual disabilities is frustrating and harmful.
Science
Genetic variation associated with intellectual disability discovered
A recent study published in Nature Genetics has identified a genetic variation associated with intellectual disability. In general, improved understanding of the ways our genes impact our brains and bodies is a good thing. But it’s important to be careful when interpreting biological research, particularly in relation to intellectual disability. The idea of a genetic basis for intellectual disability has long been associated with eugenics, racism, and isolation of people with intellectual disabilities.
With this study in particular, it’s important to note that this variant is predicted to explain less than 0.3% of intellectual disability cases. It’s not a perfect predictor, either, meaning that some people have this variant and don’t have an intellectual disability. Ultimately, I think this study is more interesting and useful from a molecular biology standpoint (understanding how methylation and gene expression work) than from a real-world applications standpoint.
For an in-depth look at why using genetics to predict intelligence is extremely complicated, check out this article.
Experimental Fragile X Drug shows promise
Two clinical trials are underway for the drug zatolmilast, which treats Fragile X syndrome. Fragile X syndrome is a genetic condition associated with intellectual disability, particularly in men. Meanwhile, NPR reports that at least one participant in the study has seen substantial positive changes in his life. Although the study is blinded, meaning that participants don’t know whether they are receiving zatolmilast or a placebo, the changes described by Jason Mazzola and his family after enrolling in the study are huge. Before taking the drug, Jason struggled with intense anxiety and difficulty communicating, and he needed constant supervision. Now, Jason and his family report that he is able to walk downtown, go to work, and do errands by himself. He’s also happier, able to communicate better, and more social. “It helps me focus a lot, helps me get more confident, more educated,” Jason reports.
This is fantastic news, and it’s a perfect example of genetics tools being used to improve the lives of people with intellectual disabilities, rather than as excuses for eugenics and oppression.
More support needed for pregnant people with intellectual disabilities
A systematic review out of the UK finds that pregnant people with intellectual disabilities would benefit from greater support and that their midwives feel inadequately prepared to care for them. Primary concerns for pregnant people with ID include a lack of education around pregnancy, difficulty understanding information presented by the medical team, fear of losing their child, and negative reactions from family, friends, and their medical team. Midwives want to help, but many feel unprepared to provide adequate support.
This review is good news because it connects a problem with a solution–midwives want to receive training to provide better support to pregnant people with ID. Hopefully this review will encourage policymakers, medical boards, and hospitals to provide this training.
And that’s all for this month! Let me know if I missed any major stories.