Friends of Autistic People (TheFAP) founder Brita Darany von Regensburg and husband Tibor attended last week’s Family Hearing and Testimony Day at the Developmental Disabilities (I/DD) Caucus meeting in Hartford.
Representative Lucy Dathan (D-142), Vice Chair of the Human Services Committee, and State Representative Rachel Khanna (D-149) were among the sympathetic legislators listening to the parents’ woeful stories.
The Caucus provided a platform for parents of profoundly autistic children to tell their stories, many of them heart breaking.
According to TheFAP founder/President Brita Darany von Regensburg, parents, frequently quite emotionally, spoke about abuses, uncaring treatment of their adult children by staff in the group homes where they live. They told of Staff being on their phones while the autistic kids are sent to their rooms, sometimes lying in urine; smoking , sleeping off their highs, kids inactive all weekend Yelled at. One mother, pleading for help, told the assembled parents and representatives that her very needy challenging autistic son has been turned away by several care providers claiming they could not care for him due to his aggression. Now he is stuck shackled to his bed in an ER hospital room where no one knows or is trained how to support a person with profound Autism.
The parents all urged the Governor to appropriate more money to the Dept of Developmental Services so the people who care for their kids can be paid higher wages and they could attract more qualified staff.
They also worried that the DDS “innovative STEP housing” program did not include anything for those with profound nonverbal Autism.
Although the Commissioner promised that the traditional group homes will continue, parents still feared that they might be closed out.
Friends of Autistic People is a Greenwich-based advocacy and Autism education nonprofit organization founded in 1997. In addition to being a resource for connecting parents to services and information, FAP also funds music-based autism therapy for children /adultd with profound nonverbal Autism from financially struggling families.
For more information or to register for FAP’s cocktails plus jazz event with Delfeayo Marsalis on August 4, 2024 at the Stamford waterfront call (203) 661-8510.