At Help in the Home we believe that everyone deserves a full life, including people with schizophrenia. We know that with treatment there is hope. Unfortunately, one confounding symptom of schizophrenia and other brain diseases is anosognosia, a neurological deficit that creates an inability within the person to recognize they have an illness. In John Oliver’s HBO show, Last Week Tonight special on mental health care he said, “we had institutions that looked like jails and now jails have become the institutions.” He really hit the nail on the head with this statement. Our system is broken and does not offer the care people with complex mental health needs requires. This is the reason why advocacy is essential to Help in the Home’s mission.
Our Interview with Co-Founder, Rayetta Michael
Q: TELL US ABOUT YOUR LATEST ADVOCACY EFFORTS
“In the Month of April, I had the privilege of joining people from the Schizophrenia Policy Action Network (SPAN), Schizophrenia and Psychosis Action Alliance (S&PAA), and Treatment Advocacy Center (TAC) on Capital Hill for a day of educating legislators with personal stories followed by a day of coming together with experts in the field including those with lived experience to create the S&PAA National Mental Illness Justice Center.“
Q: WHAT WERE THE MOST MEANFUL MOMENTS?
“It was so impactful seeing people sharing their experiences to give voice to the voiceless. Bethany Yeiser sharing her story on the panel and being applauded. She is a living example of how treatment works! Bethany developed schizophrenia in college. She had no idea she was ill. She gave away her belongings, disconnected from friends and family and lived on the streets eating out of garbage cans. After 4 years, she was finally arrested and hospitalized involuntarily. With treatment, she recognized her illness and was able to rebuild her life. Today she serves as President of the CURESZ Foundation. She is an author and motivational speaker, advocating for schizophrenia awareness and proactive treatment.
I was left speechless by the moms who hold onto hope and fight for their loved ones with such tenacity in a broken system. It was an honor to bear witness to the families as they shared their stories to the staff of the legislators on Capital Hill and pointed out their privilege. The majority of families are not able to leave work and dedicate their lives to caring for a loved one with serious mental illness (SMI). As they shared their stories, they were speaking for those who have no voice.
Another story that stood out to me was from a young woman named Ariel. Her father developed paranoid schizophrenia and is now doing life in prison because his family could not get him the treatment he needed. Watch this video to hear more of her story.“
Q: WHAT GAPS IN OUR SYSTEM DID YOU NOTICE BEING HIGHLIGHTED BY THE STORIES THAT WERE SHARED?
“Three come to mind for me and I’d like to share those stories with you. The first story is about the comparison of insurance coverage for cancer to insurance coverage for mental health. One of the moms shared how her husband developed cancer, and Medicare paid for all of his care to get the best surgeon. It ended up paying over five hundred thousand dollars so that he survived cancer. Her son had a psychotic break and developed schizophrenia, and Medicare will not pay for him to get the care he needs. He’s a young man with his whole life ahead of him if he were to get the care he needed.
The second story highlights HIPAA (Health Insurance Portability and Accountability Act) challenges. Another mom who is a nurse working with hospice care patients, often those with Alzheimer’s and dementia, shared her experience. In hospice settings, families are fully included in care whether or not the patient has signed a HIPAA form. However, when her son was hospitalized with a full psychotic break, she was not able to see him or talk to him for more than twenty-one days because he did not sign a HIPAA form. She’s the one who knew best how to care for him and what was going on with him. This should not be happening.
The third story touches on privilege, advocacy, and systemic change. Two of the moms stopped working in order to care full time for their loved ones. The system required them to fight to get them the care they needed. One mom’s son is now in college and doing well. She points out what a point of privilege it is that she had the resources to stop working and provide the full time care her son needed and that she had the ability to advocate for him. Her desire is for all young people that develop schizophrenia to get the care they need because the system becomes revamped and restructured to provide the care that we know is effective.“
Q: WHAT HOPE WERE YOU ABLE TO TAKE AWAY FROM THIS EXPERIENCE?
“ Learning from families in other states that changing laws works! One mother moved her son to Arizona because it has Assisted Outpatient Treatment (AOT), a system that keeps people out of jail and the hospital by having a judge court order treatment. He is now consistently taking his medications and maintaining stable community housing because of AOT.”
Q: HOW CAN OTHERS GET INVOLVED?
“We are partnering with organizations and people who are undertaking the monumental lift of addressing this criminalization rather than treatment. I would strongly encourage you to become members of any of the agencies I’ve already mentioned including the Schizophrenia Policy Action Network (SPAN), Schizophrenia and Psychosis Action Alliance (S&PAA), Treatment Advocacy Center (TAC), and the CURESZ Foundation. If you are local to Montgomery County Maryland, I would also encourage you to join NAMI Montgomery County, where I serve as a board member. Otherwise, I would suggest joining your local NAMI chapter. If you are a Maryland resident, reach out and I will add you to our list of advocates so you are informed of the legislative efforts in Maryland you can support through testimony & letters to your legislators. We also hope to see at TAC’s upcoming event on Wednesday, May 20th at AFI in Silver Spring where there will be a screening and panel discussion of the documentary, Nobody Care About Crazy People.”
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If you are interested in learning more about how you can get involved in local mental health advocacy efforts please contact us and ask to be added to Rayetta’s email list.