The Advocacy Phase
From 2019 to 2022 disability rights advocate and special needs parent Tonya Reiner experienced confounding barriers to securing appropriate behavioral health services for her young adult son with complex needs, including Autism and psychiatric conditions, through the SMI adult care system in Arizona.
Tonya worked tirelessly for 3 years amid the COVID-19 pandemic battling an unresponsive public mental health care system while her oldest son experienced debilitating symptoms from Schizophrenia onset, later downgraded to Schizo-affective Disorder. While this high school student with advanced abilities in science and engineering suffered increased seizures, memory loss and functional regression from the brain disorder, the SMI-credentialed clinics in Northern Arizona tasked with providing his psychiatric care repeatedly failed their contractual obligations to implement treatment plans, ensure on-time access to prescribed medications and timely dispatch crisis services.
In a public system that promises individualized wrap-around services for its high-needs members, Tonya was often her son’s only support.
In 2021 Tonya connected with the AHCCCS Office of Human Rights (OHR), a division within Arizona’s Medicaid program that advocates for members with the Serious Mental Illness (SMI) designation, and began the arduous process of holding behavioral health providers accountable for their egregious failures. Representing her son’s best interests as his guardian and Special Assistance Advocate, Tonya filed hundreds of actions (grievances, appeals, requests for investigations, rights violations) against several AHCCCS-contracted health plans and Behavioral Health Homes (BHH). Systemic change takes time, but Tonya hopes these advocacy efforts lead to improved mental health care for those most vulnerable in Arizona.
Tonya determined to turn this negative experience into a path forward for her sons and other children and adults with similar challenges. Journey With Me LLC was concepted in 2021 and in 2022 the Journey began. In September 2022 Tonya exited her son from the SMI system in Arizona with a non-engagement service plan after establishing his psychiatric care outside its walls. Tonya invoked a lesser-known care alternative available to SMI/DDD members that offers greater choice. Tonya is proud to report that her sons are psychiatrically stable and enjoying life in their family home and community.
Journey With Me LLC was created to meet the growing demand for appropriate and effective services for children and adults whose needs are beyond a one-size-fits-all approach. In leading this effort, Tonya combines her versatile background in business, journalism and marketing with personal and professional experience in special education, behavior intervention and clinical support.