Open Collective
Open Collective
CALL TO ACTION - Please share your stories with the ISMICC
Published on September 23, 2022 by Jeanne Gore


Save the date - October 28, 2022 - and submit your comments to the ISMICC no later than October 10, 2022!
Dear NSSC Members,

We need your voices!

From SAMHSA: In December 2016, the 21st Century Cures Act was signed into law. Through this Act (Public Law 114-255), the Interdepartmental Serious Mental Illness Coordinating Committee (ISMICC) was established to make recommendations for actions that federal departments can take to better coordinate the administration of mental health services for adults with a serious mental illness or children with a serious emotional disturbance. 

The ISMICC meets no fewer than 2 times a year. Since it’s inception, NSSC has been following their work very closely. When they came out with their initial report to congress in 2017, NSSC sent this Position Statement in response to their initial report. Every time the ISMICC meets, NSSC submits comments for the record, both verbally when allowed and in writing. 

The ISMICC’s next meeting is Friday, October 28th from 10 a.m. - 4:30 p.m., EDT. 

From the Federal Register: “The meeting will be held virtually and can be accessed

or by dialing 669-254-5252, webinar ID: 161 707 5418, passcode: 151059. Agenda with call-in information will be posted on the SAMHSA website prior to the meeting at:

To attend virtually, submit written or brief oral comments, or request special accommodation for persons with disabilities, contact Pamela Foote. Individuals can also register on-line at:

The public comment section will be scheduled at the conclusion of the meeting. Individuals interested in submitting a comment, must notify Pamela Foote on or before October 10, 2022, via email to:

Up to three minutes will be allotted for each approved public comment as time permits. Written comments received in advance of the meeting will be considered for inclusion in the official record of the meeting.
Substantive meeting information and a roster of Committee members is available at the Committee’s Website:

The following is NSSC’s comments written by our Policy Action Committee on behalf of NSSC:

NSSC Comments for ISMICC 2022 Meeting

September 2022

To Members of ISMICC:

We recognize the enormity of the task charged to your committee and appreciate your vision statement for the nation. Your April 2022 report demonstrates that collaborations between federal and non-federal departments and recommendations from them are progressing and increasing. While the intent is well-meaning, and the care coordination within the mental healthcare system is complex, we, the members of the National Shattering Silence Coalition, comprised of people with lived experience, families, caregivers, and professionals, are not yet feeling the practical effects of your policy efforts. We need swift and more decisive action.

We urgently request that you consider the following recommendations and deliver on the promise inherent in your policy vision statement to support those with SMI and SED, and related Co-Occurring Disorders, or as we more accurately refer to these neuropsychiatric disorders– Serious Brain Disorders (SBDs). We address our recommendations according to each of the 5 Focus Areas of ISMICC:

  1. “Strengthen federal coordination to improve care”: Use the ISMICC policies to leverage a call on Congress to repeal the IMD Exclusion (there are currently 2 bills in front of Congress that can do this, H.R. 2611 and H.R. 7803). In addition to increasing the number of hospital beds, repealing the IMD Exclusion would allow for increased reimbursement for inpatient care and all facilities at various levels of care, including access centers and longer-term #HousingThatHeals.

  1. “Access and engagement: Make it easier to get good care”: This cannot be accomplished without HIPAA reform. Call on Congress to eliminate the HIPAA handcuffs which exclude caregivers of those with SMI (SBDs) from participating in their loved one's care and care plans.

  1. “Treatment and recovery: Close the gap between what works and what is offered”: We recommend that AOT, and CCBHC fidelity standards be federally mandated, funded, and implemented using nationally standardized guidelines.

  1. Increase opportunities for diversion and improve care for people with SMIs involved in the criminal justice systems.”Adopt judicial "pathways” including AOT, ACT, FACT, as recommended by the National Judicial Task Force on State Courts Response to Mental Illness, the Psychiatrists and Judges Initiative, and the National Equitas Model Law Workgroup.

  1. Develop finance strategies to increase availability and affordability of care”: The MHPAEA (Mental Health Parity and Addiction Equity Act) is great but ineffective in achieving this goal. We need swift, simple action: tell Congress to repeal the IMD Exclusion. We can’t stress it any more than we have: IMD Exclusion is archaic and unjust, blatant discrimination. Waivers for SMI are underutilized at the state level requiring a Federal Congressional response.
We are the voice of those who know. We are speaking from first-hand experience. We are watching for you to act.


NSSC Policy Action Committee on behalf of members of the National Shattering Silence Coalition

Contact information:

Katie Dale, Co-Chair Policy Action Committee

National Shattering Silence Coalition (NSSC)

Please consider sharing your story, particularly those that relate to how the IMD Exclusion has been a barrier to treatment to you or your loved one. It is only by speaking out, #ShatteringSilence, that we will be heard.

With gratitude and hope,

Jeanne Gore

Coordinator & Co-Chair Steering Committee

National Shattering Silence Coalition