Back Helpline
Helpline
Back Events
Events
Home » Resources » Advocacy

Advocacy

Community Playbook
wooden blocks spelling "advocacy", symbolizing strategies to advocate for severe mental illness treatment systems

Learn about personal versus system advocacy and how to fight for change without compromising self-care.

How do I become an advocate for my loved one and a better system?  

When you actively support a cause with a goal to impact change, you are an advocate. An advocate might work toward better treatment and help for a specific individual. That work is a type of personal advocacy. Advocates might work toward changes in laws or policies within their community, state, or country. That work is systems change advocacy.  

Always start with self-care

Before reading more, please pause to consider that this is difficult work. Advocacy can be challenging, especially in the midst of a crisis. Please pace yourself and pay attention to your needs so you can see when it’s time to advocate and when it’s time to step away.   

Here are phrases to consider and perhaps adopt to support yourself:   

    • As an advocate I do what I can with the information and resources available in any situation. I cannot do more than that. 
    • My own well-being comes first. On a plane I put on my own oxygen mask first. That’s true in advocacy work too. If I run out of air, I cannot help anyone. 

How does an advocate begin? 

Here are starter questions to ensure that advocacy of any type is effective: 

    • What do you want? 
    • Who has the power to make that possible? 

Organizing answers to those questions is key for setting goals, seeking allies, organizing action steps, and tracking progress for your advocacy project. Make sure to clarify whether your work is a personal advocacy project or a systems change advocacy project.

Personal advocacy

When you work to improve circumstances for yourself or someone you care for, you are a personal advocate. If your advocacy work relates to SMI, you might need to do some research to understand the state’s mental healthcare structure. From TAC’s interactive U.S. map, click on your state and scroll through the resources. Can you figure out whether mental health is managed by a state department, a division of government, a mental health authority, or some other entity?

Next, consider what help is needed for the moment. For example, does a person need voluntary or involuntary services? Voluntary services are always preferred but not always accessible for someone unable to see that they have an illness because of anosognosia. Personal advocacy for someone who lacks insight into their condition has unique challenges and often involves the courts.

Civil courts deal with severe mental illness (SMI) in non-criminal matters such as:  

    • Emergency custody and evaluation, inpatient commitment, and outpatient commitment. TAC’s article about seeking commitment helps you hone your advocacy position to connect symptoms and behaviors with state laws.
    • Guardianship or alternatives, such as conservatorship or power of attorney
    • Medical malpractice (TAC provides general help to seek legal resources) 
    • Family law and custody (for example, one party in a divorce proceeding might file for a court-ordered psychological/forensic evaluation of the other party)

Criminal courts are involved with “forensic” aspects of the SMI system, including:  

    • Competency evaluations and restoration to meet requirements related to a person’s legal capacity or “fitness” to proceed
    • Criminal defense, such as a plea of not guilty by reason of insanity
    • Mental health court or another criminal court diversion option
    • Treatment during incarceration, supported by U.S. Constitution protections against cruel and unusual punishment
    • Parole, probation, and conditional release from a forensic facility—a psychiatric facility for people involved in the criminal legal system  

TAC provides an article about criminal legal issues that intersect with SMI.   

Additional topics for personal SMI advocates:  

    • Public insurance: If the person with SMI has Medicaid, it’s worth researching state waiver programs for care coordination or in-home services. Advocates also might seek “case management” so a managed care agency helps in provider searches.
    • Private insurance: What agency is responsible for oversight of the plan? TAC’s article about challenges with insurance helps you answer that question, provides information about federal parity laws, and helps you approach an appeal process.
    • Filing complaints: Is there a concern about quality of care, abuse, or neglect? TAC’s article about  complaints and grievances provides a place to begin. For more tips, refer to SMI Advocacy Guidelines from Copa Health.
    • Discharge planning: Advocating for proper discharge is a difficult and critical project. TAC provides an article, including what to consider if there is a suicide risk.
    • AOT: Are court-ordered outpatient services available? If yes, they are worth advocating for when a person with SMI is unable to see how treatment might improve their quality of life. TAC’s article about assisted outpatient treatment provides basic information, and AOT contacts, listed by state and county, provides a starting point to look for programs. A county office or agency providing outpatient services may know if AOT exists in the region.
    • Know what to look for: Research best-practice options along the continuum of care to know what to advocate for when seeking inpatient or outpatient services.
    • Put paperwork in order: A carefully organized and succinct mental health history can open doorways and improve quality of care.

TAC programs and support for personal advocates:

Systems change advocacy  

Personal advocacy can become systems change advocacy when gaps and barriers make the treatment systems hard to navigate. AOT is one common place for this to happen. Connecticut and Massachusetts don’t have AOT laws. In other states, AOT programs are too few or too variable. AOT is a TAC priority, with a focus on implementation to ensure that programs follow best practices.   

Another common gap relates to psychiatric bed shortages, also an advocacy priority for TAC. The treatment system’s lack of capacity to serve people who periodically need acute care compounds problems throughout the system, leading to overly stringent admission decisions, premature discharge of unstable individuals, and long waits for competency services. TAC reports can support advocates at the state and federal level: 

Tips for systems change SMI advocates:

    • Think local: Counties operate many of the nation’s mental health programs, including mobile crisis outreach, case management teams, therapeutic courts, disability services, and more. If these systems are failing, contact a county supervisor, commissioner, or alderman. Share key elements of your story and ask how you might advance work toward better options for your loved one and others. 
    • Know who has been elected to work for you: Make a list of your federal and state elected officials. When you are a constituent, elected officials are responsible to acknowledge your concerns. A site called Open States can help you begin. 
    • Show up: Attend or organize town hall meetings. If you’re in charge of the guest list, invite stakeholders from across the system, including elected officials, people with lived SMI experience, family members, providers, and more.
    • Use your voice: Contact state representatives by email, mail, phone, or fax. You may be able to schedule an in-person meeting with an elected official or their staff. Your outreach will have the most impact if it’s personal. Share a piece of your story and connect key details to data and a clear ask.

Action steps for systems change advocates: 

  • Share your story anonymously through the Sandy Pruett Project, a space for solidarity and collecting evidence of systemic failures.  
  • Email advocacy@tac.org to be on an interest list for an Advocacy Bootcamp online training series that introduces SMI core topics and teaches you to craft your story to impact change. 
  • Visit TAC’s Action Center to sign up for Voter Voice alerts about legislative actions in your state or to browse pending legislation related to SMI across the U.S. 
Save as PDF
Share