My Remarks for the Utah Behavioral Health Commission

 Just for the record---feel free to skip if you aren't interested in public mental health policy: We had only 3 minutes to speak so I took a nine minute statement and cut it down to about 3 minutes and 20 seconds which was fine.  However, they had very few speakers so we wished that they would have allowed us to speak longer in more details about our experiences and wishes for the system.  It was good though because afterwards they came and spoke to us separately and asked us more questions about our thoughts and experiences.  That was the best part.  Here is my statement:

My name is Judy Hall and we live in Davis County. Our child was diagnosed with schizophrenia when he was 18…and that was 18 years ago.

What is it like to have a beloved child with schizophrenia? It is like watching their whole personality disintegrate before your eyes and discovering that their minds are a “living hell”. It is watching your calm and sweet son yelling on the porch at 2 am to tell the neighbors to stop planning to hurt his family. It is watching him pacing and talking for hours and sometimes days at a time with little sleep. It is him calling the police at 4:00 am because he was afraid that he might hurt me. It is holding his hand when we walk outside because of his delusion of floating away. It means trying medications and then trying others to find one that gives him some relief and then watching him deal with debilitating side effects. It is the inability to offer relief or peace in the middle of all his suffering. We share, because there are many who are suffering. Speaking up and being louder is the best we as parents and as a part of the Utah Shattering Silence Coalition can do to help them.

What has gone right for us: Accessing care from Davis Behavioral Health and The Utah State Hospital. These organizations with all of the community mental health centers in the state need to be strengthened. They are the ones on the front lines of services and treatment for those with psychosis-related illnesses.

This is my shortened wish list—Each of these “wishes” has a story, but limited time won’t allow sharing those--

1.      1. We need to expand and support First Episode Treatment Centers throughout the state.

2.      2. ERs are often just terrible places for a person in psychosis and their families. Families need to feel safe about taking their family members to the ER during a crisis. A working partnership with the hospital systems in the state to provide appropriate ER rooms or even better –create partnerships with local community mental health centers to support Receiving Centers in every ER must be a priority.

3.      3. Supportive housing options need to be expanded. Those with psychosis, even on medication, often require support.  It does no good to stabilize them in a hospital setting and then discharge them to “no where.”

4.      4. And if the housing situation is “mom and dad’s basement,” please assure that parents or other family members had access to support, education, therapy and crisis management resources.

5.      5. Jails are not designed to care for the mental ill and we must stop using them for that purpose, even for one night.  Police officers should not be making decisions about taking someone to jail or to a Receiving Center without best practice training. Receiving Centers and additional longer stay beds need to continue to be expanded throughout the state to prevent jail time for those with psychosis-related disorders.

Our son struggles.  He continues to deal with delusions and voices plus the side effects of medications that he must take to cling to reality. We as parents of those with psychosis are a resource to our adult children. We need to be part of the team, we need to be heard on behalf of our children, and we need to be supported. Ask us, listen to us, help us help our children and all those with psychosis related illnesses---and when we get tired or frustrating or even angry with the system, don’t tell us “we need to find therapy to manage our grief ” Help us help you and make this world or at least this, our community, a kinder, more compassionate and understanding place for our family members with psychosis.  Thank you.