If you’re new here or need an update, a rundown of the what this is, why it’s a problem, and what I am trying to do to solve it is available here. Please sign and share the petition to help escalate this.
As many of you are aware, I filed a complaint with the Civil Rights Office about the state of North Dakota registering autistic people in a government database without consent. Upon receiving my complaint, they contacted me and said that they would be pursuing it further.
Yesterday, I received an update, and it was not the update I hoped to receive. The letter they sent me is below, with my personal contact information redacted.
The text reads:
“Dear Dr. Marschall:
On March 3, 2023, the U.S. Department of Health and Human Services
(HHS), Office for Civil Rights (OCR), Rocky Mountain Region, received your
complaint alleging that the North Dakota Department of Health (NDDH) is
discriminating against against individuals on the autism spectrum when their
diagnosing psychologists are required to complete an extensive form
including individuals’ contact and personal information and provide this
information to the North Dakota Autism Spectrum Disorder database without
individuals’ consent.
In fulfilling our obligation to investigate complaints filed with this office, OCR
conducts a thorough and detailed review of all complaints (as well as any
other information provided to OCR (if applicable)), and requests and obtains
additional relevant documentation when necessary. After conducting such a
review, OCR determined that it will not further investigate your complaint
and is, therefore, closing it effective the date of this correspondence. OCR’s
determination as stated in this letter applies only to the allegations in this
complaint that OCR reviewed.
If you have any questions regarding OCR’s disposition of your complaint,
please contact Ms. Karel Hadacek, J.D., Equal Opportunity Specialist, at
(303) 844-7836 (Voice), (303) 844-3439 (TDD), or karel.hadacek@hhs.gov.
We regret we are unable to assist you further. Thank you.
Sincerely,
Andrea Oliver
Regional Manager”
I emailed Ms. Hadeck asking why registering people with the government against their consent is legal, and she gave me a brief response: “Dr. Marschall: Disability-specific needs are frequently assessed for legitimate government functions, such as funding supportive services.”
I emailed back asking for more details about these “legitimate government functions,” specifically asking how the data is being used in a way that is not exploitative or a violation. She directed me to Code 23-01-41, which you can view here. From what I can tell, this seems to detail that they are keeping a registry, that it is mandatory, but not explaining why or what they will do with the data.
I feel disappointed. I hoped the Civil Rights Office would be of more help. Of course, I am not letting this go.
If you are autistic and live in a state with an autism registry, I encourage you to reach out to the provider who diagnosed you and ask if you were put on the registry (but only if you feel safe, comfortable, and able to do this). If you have been registered without your consent, please let me know. I am trying to explore options for taking this to the courts.
Thank you everyone who has followed this and shown their support. I hope we have good news soon.