The Autistic Self Advocacy Network (ASAN), the nation’s leading advocacy organization by and for autistic individuals ourselves, applauds the recent announcement by the United States Department of Justice and Department of Health and Human Services regarding their partnership to help child welfare agencies remain in compliance with federal civil rights laws. We urge the Departments in particular to ensure that people who use alternative and augmentative communication (AAC) methods have the opportunity to communicate during the process of child or adult protection services investigations make decisions about their own lives.
One particular example of the need for further action on this topic is the case of Sharisa Kochmeister, a well-known autistic advocate who has been placed under guardianship by Jefferson County Health Services in Colorado. Sharisa’s case is a clear instance of depriving AAC users of the communication tools they need resulting in a dramatic loss of their independence and ability to make choices about their lives. Sharisa is the former president of Autcom, representative to the Colorado Developmental Disabilities Council, manager of Voices and Choices of Autism, and active with the Autism Society of America.
Earlier this year, Sharisa was removed from her home and placed under guardianship, due in large part to ineffective communication supports. Sharisa, who communicates by typing, has not been given access to her usual augmentative communication device, a Lightwriter or to any trusted individuals within her network who are familiar with how she communicates. Without her Lightwriter and the support of trusted friends or family members, Sharisa has been effectively denied an opportunity to express her own wishes. In addition, Jefferson County Human Services, Sharisa’s guardian, has placed her in a “host home” and has until now failed to disclose her location or contact information to her friends or family.
“Supported decision-making – giving a people with disabilities the communication and social supports they need in order to make their own decisions – is a less restrictive alternative to guardianship,” said Sam Crane, ASAN’s Legal Director and Director of Public Policy. “Social service systems and providers should actively engage with a person’s network to learn about which kinds of communication supports might help and get reliable information about a person’s values, goals, and wishes – and never assume that someone who can’t speak can’t communicate.”
Everyone has the right to effective communication and self-determination. ASAN demands that Jefferson County Human Services collaborate actively with Sharisa’s known support network in order to ensure that she has the supports she needs in order to communicate and make decisions about her own life. Once Sharisa has these supports in place, we call on Jefferson County Health Services to ensure that her wishes are respected and to ask the court to remove her from guardianship.
Although we hope that the upcoming partnership between the Department of Justice and Department of Human Services will help prevent future cases like Sharisa’s, it is urgent that Sharisa regain her independence as soon as possible. As a result, ASAN is prepared to provide technical assistance and educational outreach to Jefferson County Human Services, in cooperation with local advocates, to ensure not only that Sharisa receives the supports she needs to make and communicate her own choices, but also to ensure that others with disabilities under guardianship in Jefferson County have the same supports.
ASAN is one of several partner organizations involved in the development of the National Resource Center on Supported Decision-Making, a nationwide training, technical assistance, and resource center to explore and develop supported decision-making as an alternative to guardianship. Learn more about the National Resource Center at supporteddecisionmaking.org.