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Advocating for Support & Change

Get Involved

How to Get Involved

Sometimes when our lives have been touched by early psychosis we want to get involved, give back and make a difference in the lives of others. Whatever the scale or scope, here are some resources that can help.

Featured Opportunities for Early Psychosis Community Members

Interested in sharing your opinions and feedback? Current and past program participants and family members can help shape early psychosis care. Here are a few current opportunities offered by HeadsUp and our collaborators.

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Mental Health Planning Council

The Pennsylvania Mental Health Planning Council (MHPC) consists of three committees: Children’s Advisory Committee, Adult Advisory Committee, and Older Adult  Advisory Committee. These committees come together to form the MHPC whose purpose is to advise on a broad behavioral mandate to include — but not be limited to — mental health, substance abuse, behavioral health disorders, and cross-system disability.

The Office of Mental Health and Substance Abuse Services (OMHSAS) advisory committees include individual representatives of youth, adult and older adult individuals who have been served by the behavioral health system, family members of such youth and adults, providers, advocates, professionals, their respective organizations, as well as governmental organizations. At least 51 percent of the members are current or former behavioral health consumers and family members. Members are appointed by the deputy secretary of OMHSAS. Learn more here: https://www.dhs.pa.gov/Services/Mental-Health-In-PA/Pages/Mental-Health-Planning-Council.aspx

 

Strong365 Lived Experience Advisory Panel (LEAP) 

Looking for current or past program participants and their loved ones to join in developing the strategy and content for a campaign to shorten the duration of untreated psychosis (DUP) in PA. Participation in the panel:

  • Will take place virtually via Zoom
  • Requires 1-2 hours per month over 12 months
  • Compensates participants $200 at the end of the 12 months

Connection Learning Healthcare System (CLHS) Collective 

The CLHS is seeking current or past program participants and family members to guide improvements in its early intervention programs. There are various ways you can get involved:

  • Join a lived experience advisory council
  • Brainstorm with researchers, clinicians, trainers, peer specialists and others
  • Paid consultation on research projects
  • Share art, music, stories, profiles etc.
  • Sign up to receive research, feedback, and leadership opportunities

Advocacy Resources

First Episode Psychosis Programs A Guide to State Expansion

“While FEP programs are growing, your advocacy is needed to speed the spread of programs in every state. NAMI created this guide to help NAMI State Organizations lead the charge. No group has more invested in the future of mental health care and this toolkit is designed to equip you to ensure that every young person experiencing psychosis in your state receives quality FEP care.”

Guide to State Expansion

Job Accommodation Network (JAN)

“The leading source of free, expert, and confidential guidance on job accommodations and disability employment issues. Serving customers across the United States and around the world for more than 35 years, JAN provides free one-on-one practical guidance and technical assistance on job accommodation solutions, Title I of the Americans with Disabilities Act (ADA) and related legislation, and self-employment and entrepreneurship options for people with disabilities.”

Job Accommodation Network

Students with Psychosis

“Students With Psychosis offers 28+ hours of programming each week available at no cost to students and advocates globally. Over 75% of SWP leadership is from the lived experience perspective. It is their mission to empower student leaders and advocates worldwide through community building and collaboration.”

Students with Psychosis

“Pledge to be StigmaFree”

“The National Alliance on Mental Health (NAMI) has created a campaign to help educate the public about mental health stigma and how you can help change the way the world sees mental health.”

Pledge to be StigmaFree

Mental Health America-Get Involved

“Mental Health America (MHA)’s work is driven by its commitment to promote mental health as a critical part of overall wellness, including prevention services for all; early identification and intervention for those at risk; integrated care, services, and supports for those who need them; with recovery as the goal.”

Mental Health America-Get Involved

National Alliance on Mental Illness (NAMI)-Advocacy

“NAMI advocates to improve the lives of people affected by mental health conditions. From the U.S. Capitol to state legislatures to local city councils, the NAMI Alliance uses the power of lived experience to shape how our country helps people with mental illness.”

NAMI-Advocacy

National Network to Eliminate Disparities in Behavioral Health (NNED)

“To address disparities in behavioral health care, the National Network to Eliminate Disparities in Behavioral Health (the NNED) was formed with support from the Substance Abuse and Mental Health Services Administration (SAMHSA), the National Institutes of Health/National Institute on Minority Health and Health Disparities, and The Annie E. Casey Foundation, in partnership with the National Alliance of Multi-ethnic Behavioral Health Associations (NAMBHA).”

NNED

NLBHA’s Latino Behavioral Health Juntos Network

“By joining NLBHA’s Latino Behavioral Health Juntos Network you can be a part of a national network of behavioral professionals, leaders, policymakers, practitioners, family members, consumers and advocates that are at the forefront of behavioral health developments affecting Latinos.”

NLBHA

Pa Department of Human Health-Advocacy

“There are a wide variety of advocacy organizations, services, and programs available in Pennsylvania that can help with getting the information, services, and supports you or a loved one need to maintain your health and independence. Options include both private pay and publicly funded programs.”

DHS Advocacy

Schizophrenia & Psychosis Action Alliance-Volunteer

“Seeking volunteers who are passionate and inspired about making a difference and ending the stigma around serious neuro-psychiatric brain diseases.”

Schizophrenia & Psychosis Action Alliance

The Bazelon Center for Mental Health Law

“The mission of the Judge David L. Bazelon Center for Mental Health Law is to protect and advance the civil rights of adults and children with mental illnesses or developmental disabilities.  We envision a society where Americans with mental disabilities live with autonomy, dignity, and opportunity in welcoming communities, supported by law, policy, and practices that help them reach their full potential.”

Bazelon

The Trevor Project Volunteering

“As a volunteer you are on the front lines; working one on one with LGBTQ young people to help them navigate tough times and to prevent suicide.”

Volunteer with the Trevor Project

First Nations Behavioral Health Association (FNBHA)

“The purpose of the FNBHA is to provide national leadership to all groups, institutions and individuals that plan, provide and access Native American behavioral health services.”

First Nations Behavioral Health Association (FNBHA)

National Federation of Families

“The Federation is involved at the national level in monitoring legislation, funding opportunities, advocacy opportunities and resources that could aid your work as the voice for families in your community, state and nationwide.”

National Federation for Families

Pennsylvania Mental Health Consumer’s Association

“PMHCA is a state-wide member organization dedicated to the support of all people who seek aid for recovery from a mental illness at any stage in their journey.”

PMHCA

Mental Health First Aid

“Mental Health First Aid is a skills-based training course that teaches participants about mental health and substance-use issues.”

Mental Health First Aid

NAMI Keystone

“NAMI Keystone Pennsylvania is a 501(c)(3) grassroots, nonprofit organization dedicated to improving the lives of children, adolescents, adults, and families affected by mental illness through recovery-focused support, education, and advocacy.”

 

NAMI Keystone

Pennsylvania Health Law Project

“PHLP is a non-profit legal services organization that represents Pennsylvanians who need help getting or keeping MA. Visit their online resource library to find self-help materials related to various health care topics including MA.”

PHLP

Coordinated Specialty Care (CSC) for Early Psychosis: Financing and Fidelity

An on-demand resource of a workshop discussing the history of and contemporary issues in Coordinated Specialty Care for First Episode Psychosis. CEU’s are available without charge for viewing the webinar courtesy of the American Psychological Association Division 18 – Psychologists in Public Service. The panelists discussed recent changes in policy and financing strategies as well as future directions for Coordinated Specialty Care (CSC) for First Episode Psychosis (FEP).  They also reviewed the evidence base for CSC and discussed how it is being implemented. This workshop covered fidelity and the impact assessed in different contexts.
Online Workshop

Questions for HeadsUp?

Catherine (Cat) Conroy, M.Ed, Manager of HeadsUp
Neurodevelopment and Psychosis Section, Department of Psychiatry
Perelman School of Medicine, University of Pennsylvania
10th floor, Gates Pavilion, HUP
3400 Spruce Street, Rm. 10054, Philadelphia, PA 19104
headsuppaorg@gmail.com

We are available during standard business hours (Monday-Friday, 9am-5pm) to answer any questions you may have about our organization or to direct you to programs in Pennsylvania that can offer clinical help.