Three Main Challenges for Families of Individuals with Serious Mental Illness (SMI) or No-Fault Brain Diseases:

• • Anosognosia: Many individuals with SMI/SBD (e.g., schizophrenia, bipolar disorder) lack awareness of their illness, making voluntary treatment difficult. This symptom is a major barrier to recovery and treatment compliance. Resources like brochures from the National Shattering Silence Coalition can help families communicate with treatment teams.
• • HIPAA Restrictions: Privacy laws (HIPAA) often prevent families from participating in their loved one’s treatment, especially when the individual does not consent. However, families can share information with providers, and federal law allows certain information to be withheld from the patient if shared under a promise of confidentiality. Families are encouraged to keep an up-to-date mental health history and advocate for their loved one’s care.
  • According to the HIPAA Privacy Rule and Sharing Information Related to Mental Health (Click to review the Dept. of Mental Health HIPAA Privacy Rule and Sharing Information Related to Mental Health document), information provided by someone who is not a health care provider may be withheld from the patient under federal law: 45 CFR 164.524(a)(2)(v) (Click to review the National Archives Code of Federal Regulations), which states: “An individual’s access to protected health information may be denied if the protected health information was obtained from someone other than a health care provider under a promise of confidentiality and the access requested would be reasonably likely to reveal the source of the information.”
• • Civil Commitment and Assisted Outpatient Treatment (AOT): Civil commitment is used when individuals are unable to engage in treatment voluntarily. AOT, supported by the Treatment Advocacy Center, uses court orders and monitoring to help individuals receive necessary care, reducing negative outcomes like hospitalization, homelessness, and substance use. AOT is legally sanctioned in most states, but local implementation varies.
• Actionable Resources and Support:
  • Families are encouraged to use educational brochures, maintain mental health histories, and participate in peer support groups (e.g., Replanting Lives Peer Support Group) for ongoing guidance and community.
  • Advocacy takes many forms as explained in this booklet.
  • NSSC Resources: https://www.nationalshatteringsilencecoalition.org/nssc_education_and_advocacy_tools.html 
  • https://www.nationalshatteringsilencecoalition.org/nsscpsychcrisisguide.html 
  • https://www.nationalshatteringsilencecoalition.org/nsscpsychosisguide.html 
  • https://www.nationalshatteringsilencecoalition.org/nssccaregiversguide.html 
  • https://www.nationalshatteringsilencecoalition.org/nsscadvocacyguide.html 
  • https://www.nationalshatteringsilencecoalition.org/nssctreatmentterms.html 

If you’d like a more detailed summary or have questions about specific sections, let me know! Contact me about Caregiver Coaching (Link to PTP Coaching Services).