It would be part of U.S. Department of Health and Human Services Secretary Robert F. Kennedy Jr.\u2019s controversial plan to investigate causes of autism and potential cures.\n<\/p>\n
The news quickly drew backlash from the autism community, and federal leaders later clarified that HHS would specifically draw information<\/a> from federal health insurance programs Medicare and Medicaid to build a \u201creal-world data platform<\/a>\u201d for research into the \u201croot causes of autism.\u201d\n<\/p>\n But the announcement already had a chilling effect on parents and families, said Erin Lopes, a Pennsylvania parent of an adult son with autism.\n<\/p>\n \u201cHow would the privacy and civil rights of autistic individuals and their families be protected? How would this very sensitive data be used?\u201d she asked. \u201cAnd how would a national registry protect individuals with autism from bias and from being excluded?\u201d\n <\/p>\n Families then turned to state agencies and officials in calling for stronger privacy protections in Pennsylvania. Lopes\u2019 son, Tom Bak, who is 26, said he worries about how that information could be used to discriminate against him in job opportunities as he pursues a career in music after recently graduating college.\n<\/p>\n \u201cI worry about being openly autistic in these times. I worry a lot that people may not understand me, or they might judge me because I\u2019m autistic,\u201d he said. \u201cI feel that some of the actions of the federal HHS in the last year only make people understand autism less and they haven\u2019t shown what autism really is.\u201d\n<\/p>\n Bak called the new privacy protections in Pennsylvania reassuring and said they respected his autonomy.\n<\/p>\n Shapiro\u2019s recent executive orders also create the new Advisory Commission on People With Disabilities, which will report directly to the governor\u2019s office. The commission will be made up of people with intellectual, developmental, physical and other disabilities, as well as family members, advocates and service providers from across the state.\n<\/p>\n Members will give direct input on state laws, policies and programs that are designed for people with disabilities.\n <\/p>\n","protected":false},"excerpt":{"rendered":"It would be part of U.S. Department of Health and Human Services Secretary Robert F. Kennedy Jr.\u2019s controversial…\n","protected":false},"author":2,"featured_media":109475,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[6],"tags":[7518,442,28,30,29],"class_list":{"0":"post-167058","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-pennsylvania","8":"tag-autism","9":"tag-gov-josh-shapiro","10":"tag-pennsylvania","11":"tag-pennsylvania-headlines","12":"tag-pennsylvania-news"},"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/us-pa\/wp-json\/wp\/v2\/posts\/167058","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/us-pa\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/us-pa\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-pa\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-pa\/wp-json\/wp\/v2\/comments?post=167058"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/us-pa\/wp-json\/wp\/v2\/posts\/167058\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-pa\/wp-json\/wp\/v2\/media\/109475"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/us-pa\/wp-json\/wp\/v2\/media?parent=167058"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-pa\/wp-json\/wp\/v2\/categories?post=167058"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-pa\/wp-json\/wp\/v2\/tags?post=167058"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}