This op-ed is in response to a Dec. 12 article by Sun Journal reporter Emily Bader, “Advocacy groups rebuke calls to expand Maine’s progressive treatment program.”
Gabriel Damour, killed on Thanksgiving morning in Poland, didn’t have to die. His brother, Justin Butterfield, has been charged with his murder. Justin suffers from schizophrenia and, according to his ex-girlfriend and mother of his children, Yaicha Provencher, he seemed to have no awareness of his illness.
More mental health advocacy groups are speaking out against Maine’s so-called progressive treatment program following Gabe’s murder.
Maine’s Progressive Treatment Program (PTP), enacted in 2010, if utilized, would have likely prevented this tragedy. The PTP is compassionate treatment for those with brain disorders who have no awareness of their illness. It’s essentially a court order that allows people to be ordered into treatment in the community. Under the PTP, if their illness becomes worse, they can be brought to a hospital before they become a danger to themselves or others, before tragedy occurs.

Allay the Concerns presented by those Opposed to the PTP Program
and IMD Waiver for SMI 

NSSC members Jeanne Gore, Senator John Nutting, and Joe Pickering, Jr who hosted a press conference in Augusta on December 5th as well as many other family members and parents all across the state of Maine, are excited to announce the introduction of a bill for next legislative session to accept the IMD waiver for SMI. “We are very excited that this bill has already attracted bipartisan sponsors," said Joe Pickering, Jr. from Bangor.  

State Senator Joe Baldacci, State Senator Rick Bennett, and Representative Ambureen Rana have all already agreed to sponsor this bill. “The IMD Exclusion is the most blatant discrimination against people suffering from illnesses like schizophrenia, bipolar disorder, or major depression I can think of,” Jeanne Gore of Gardiner, added. It’s time for Maine to recognize this and take action to bring the treatment these people deserve. 

We would like to also allay the concerns presented by those opposed to this bill:

1. One federally funded advocacy organization said,“we oppose these type of forced community mental health treatment laws because for one thing, we know of no, like, peer review, randomized studies suggesting that a court-ordered commitment — committing individuals to an assertive community treatment or ACT team — for mental health treatment alone improves treatment outcomes…” 
   1. The fact is, SAMHSA added assisted outpatient commitment to the National Registry of Evidence-based Programs and Practices (NREPP) back in 2015, after an independent assessment concluded the program met its requirements for demonstrating positive outcomes in multiple, rigorous peer-reviewed studies. The value of the intervention for qualifying individuals is also recognized by the American Psychiatric Association, the National Sheriffs’ Association and the International Association of Chiefs of Police.
   2. The NREPP was a publicly available online database of mental health and substance abuse interventions. To be recognized as evidence-based, interventions had to meet NREPP’s requirements for review and be independently assessed and rated for quality of research and readiness for dissemination. 
   3. SAMHSA’s designation also followed recognition of AOT by the US Department of Justice, whose Office of Justice Programs deemed it to be an effective and evidence-based practice for reducing crime and violence in 2012. Forty-seven states and the District of Columbia currently authorize the use of some form of court-ordered outpatient treatment for individuals with the most severe psychiatric illnesses.
   4. As stated by Jeanne Gore at the press conference, “This type of early intervention has been found to be highly successful in states where it is utilized resulting in 77% fewer psychiatric hospitalizations. In addition, 74% fewer experienced homelessness, 83% fewer arrests, and 87% fewer incarcerations. 
2. This  statement has been made repeatedly by our opponents: “The IMD waiver would go against the 1990 settlement agreement in a class action lawsuit brought against the state on behalf of residents of the now-defunct Augusta Mental Health Institute.” 
   1. As was already stated in our response to the news media on December 6th, “ From our IMD Position Statement: “The state of Maine did not apply for the SMI/SED waiver based on Disability Rights of Maine’s argument claiming it was “in violation of the ADA, Olmstead, and the Settlement Agreement.” Their arguments are misguided as proven elsewhere in this position statement. It’s time to end this layer of bureaucracy and eliminate the IMD exclusion.” I hope our opponents and the public will read our position statement carefully and finally come to an understanding that the waiver is not a violation of the ADA, Olmstead, and the Settlement Agreement. 
   2. To be clear, as stated in our previous response, “These monies do not necessarily go just for hospital beds, they can go for transitional housing, for ACT teams in the community – all things that would be so helpful to keep those with anosognosia  in a community setting! Accepting the waiver would allow for increased reimbursement for inpatient care and all facilities at various levels of care, including access centers and longer term #HousingThatHeals. 
      1. From JDSUPRA: “States commonly use Section 1115 IMD-focused waivers to cover SUD and MH treatment and detoxification services, particularly residential levels of care that are often provided in IMDs. Other states like Illinois and Washington, D.C., are using their Section 1115 demonstrations to cover or pilot crisis intervention and mobile crisis response services—a move that may become increasingly more common among states once the American Rescue Plan (ARP) Act community mobile crisis intervention services option—which allows states to cover qualifying services using Medicaid State Plan or Section 1115, 1915(b) or 1915(c) authorities—becomes effective in April 2022.2
      2. A significant number of states with Section 1115 BH-focused demonstrations are using their waivers to cover peer support services, which use the lived experience of individuals recovering from SUD to support others in treatment and recovery, for individuals with SUD and/or SMI. Of the 37 states covering peer supports for individuals with SUD, most are covering this service using Medicaid State Plan authority. Peer support services can be provided in a range of clinical and non-clinical settings, and as a complement to or replacement for clinical treatment, including for crisis response services.
      3. Additionally, states use their Section 1115 BH demonstrations to provide enhanced home and community-based services (HCBS) to individuals with SMI, SED and/or SUD. In recognition that individuals with BH needs account for approximately one-third of all homeless individuals, states like Washington, Illinois, Florida and Hawaii are providing supportive housing benefits to adults with SUD and/or SMI who are or at risk of becoming homeless. In addition to Section 1115 waiver authority, states can cover supportive housing services through Section 1915(c) or 1915(i) authority. These supportive housing and tenancy support services assist beneficiaries with a range of services including securing appropriate housing, building relationships with landlords and neighbors and obtaining the skills necessary to manage a household.”
   3. Having higher levels of reimbursement will enhance services in all of these levels of care, including more work with psychologists, and multidisciplinary teams so that the models can move away from just a pill and a bed to more comprehensive care. We absolutely do still need many other things, including comprehensive community based care.
   4. Joining many other states and accepting these funds along with supporting and utilizing the PTP Program for those who lack awareness of their illness will strengthen our community support system allowing for all who suffer from serious brain disorders (SMI)  to be supported, intensely and safely in the community,” added Jeanne Gore. 

 

1. There have been those with lived experience who responded against the PTP as forced treatment and that people can instead be convinced by building trust to accept treatment. Building trust doesn’t work for someone who has no awareness of his/her illness because they cannot recognize that they are ill. This is the number one reason why people refuse treatment.  We want to make it clear that we are not seeking the PTP for anyone who has awareness of their illness. This is an unfounded fear we wish to clear up. Anosognosia is a medically recognized neurological condition resulting in a  lack of awareness of one’s illness. In addition to being seen in those who suffer from bipolar disorder and schizophrenia, anosognosia is also seen in people with Alzheimer’s Disease, dementia, Huntington's Disease  and occasionally in those who have had a stroke.  
   1. For a Progressive Treatment Plan to be approved by a district court judge, besides, making sure that housing and community supports are available, the judge has to find that the client has a lack of awareness of their disease “added Senator John Nutting  from Leeds.  MRSA §3801, sub-§§10 states, “ 10. Inability to make an informed decision. "Inability to make an informed decision" means being unable to make a responsible decision whether to accept or refuse a recommended treatment as a result of lack of mental capacity to understand sufficiently the benefits and risks of the treatment after a thorough and informative explanation has been given by a qualified mental health professional.”
2. We thought it might also be useful to point out other national and state organizations in addition to NSSC who support repealing the IMD Exclusion:
   1. National Organizations:
      1. NAMI
      2. Manhattan Institute
      3. National Association of State Mental Health Program Directors
      4. Mental Illness Policy Org
      5. Treatment Advocacy Center
      6. Schizophrenia & Psychosis Action Alliance
      7. National Association of Medicaid Directors 
      8. National Association for Children's Behavioral Health 
      9. National Association for Behavioral HealthCare
   2. State Organizations:
      1. Maine Association of Psychiatric Physicians
      2. Maine Nurse Practitioners Association
      3. Maine Association of ACT Teams
      4. Maine Hospital Association
      5. Maine Sheriff’s Association

We all agree that the Mental Healthcare system is broken. It’s time for all of us to come together to build a system that doesn’t leave anyone behind. It’s time to build a system where everyone with serious brain illnesses can receive equitable, compassionate, collaborative treatment and support that enable them to live their best lives.

We invite all stakeholders along with Governor Mills to meet with us at Governor Mills earliest convenience. Please contact Jeanne Gore at 603-969-3135 or via email at coordinator@nationalshatteringsilencecoalition.org to express your interest in attending a meeting to solve this humanitarian crisis. 

With Gratitude and Hope,

Jeanne Gore, Coordinator
Co-Chair Steering Committee
National Shattering Silence Coalition
Email: coordinator@nationalshatteringsilencecoalition.org

Senator John Nutting
Email: jnutting2020@gmail.com

Joe Pickering, Jr.
Email: joepick@aol.com

Yaicha Provencher
Email: yprovencher@sandcastlemaine.org


NSSC is a nonpartisan alliance of ​​family members, individuals suffering from serious brain disorders (SBD), professionals in the trenches, and caring people united to ensure that brain illness, health, and criminal justice systems count those with SBD, and their families in all federal, state, and local policy reforms. We are voices for the 14.2 million adults and 8 million children living with and dying too young from serious brain disorders.

NSSC supports a right to treatment before tragedy for all age groups living with serious brain disorders commonly known as "serious mental illnesses". We envision a world in which people with serious brain illnesses can receive equitable, compassionate, collaborative treatment and support that enable them to live their best lives.

We were a little surprised that the governor’s office put out three different comments about the press conference yesterday. We feel the need to elaborate on all three today.

1) They announced that the governor had increased funding for the mental health department. Yes, that’s true, but unfortunately more and more is being spent by the department clinging to their “cross your fingers policy “of releasing people with Anosognosia  over and over again, which doesn’t leave enough money to keep people safely supported in the community.

2) The governor’s office announced they didn’t accept the IMD waiver, because of “public concerns”. What public? Parents and family members, medical professionals, hospitals, all wanted the governor to accept the waiver money for brain disorders, as she did for substance abuse. The only “public” we are aware of who spoke out against the waiver was Disability Rights of Maine. From our IMD Position Statement: “The state of Maine did not apply for the SMI/SED waiver based on Disability Rights of Maine’s argument claiming it was “in violation of the ADA, Olmstead, and the Settlement Agreement.” Their arguments are misguided as proven elsewhere in this position statement. It’s time to end this layer of bureaucracy and eliminate the IMD exclusion.”

It is also a grave mistake to not recognize that so many with SUD’s also suffer from SBD’s. You can’t treat one without treating the other. Also from our IMD Position Statement:  “It is estimated that 18.7 million adults battled a SUD in 2017. 8.5 million of those had a co-occurring disorder or COD (a brain illness and a co-occurring SUD). SAMHSA determined that fewer than 11.8% of those with COD were receiving treatment for both disorders and 36% received no treatment at all. Successful treatment of their CODs requires treating both their SUD and their SBD.
 
SAMHSA has identified that there is only about a 5‐year window of opportunity for the prevention of co-occurring substance abuse after the onset of a brain disorder. Untreated SBD leads to more severe and treatment-resistant illnesses and the development of CODs. By far, the most common connection between untreated brain illness and substance abuse is self-medication. In many cases, the SUD is a symptom of the SBD and would not have developed had the patient received prompt, consistent care for their illness.”

These monies do not necessarily go just for hospital beds, they can go for transitional housing, for ACT teams in the community – all things that would be so helpful to keep those with anosognosia  in a community setting! Accepting the waiver would allow for increased reimbursement for inpatient care and all facilities at various levels of care, including access centers and longer term #HousingThatHeals. 

Having higher levels of reimbursement will enhance services in all of these levels of care, including more work with psychologists, and multidisciplinary teams so that the models can move away from just a pill and a bed to more comprehensive care. We absolutely do still need many other things, including comprehensive community based care.

​3) The most unbelievable comment was the last one:  that the PTP program was supported, but it was a last resort option! Just how last resort is it when the hospitals are so clogged up with people there, over and over and over again so people like Mr. Butterfield could not be admitted or people are waiting for 2 to 3 weeks in an emergency room, inappropriately, for a hospital bed? It is well documented that there is a much poorer prognosis for those with SBD who do not receive prompt, early intervention and treatment. Every episode causes further deterioration of the brain and other organs resulting in irreparable damage, making this population wait for beds and the PTP Program. This worsens their long-term prognosis as well as their health and safety, and the safety of the community.
  
4) We would also like to know why, when we have statutes that allow for those to get help based on grave disability and an inability to care for themselves, we must wait for them to become dangerous before even attempting to access treatment? Again, it is well documented that there is a much poorer prognosis for those with SBD who do not receive prompt, early intervention and treatment.

We would very much like the opportunity to meet with Governor Mills at her earliest convenience to discuss this humanitarian crisis and how we can finally bring treatment before tragedy for those suffering from serious brain disorders here in Maine and their loved ones who suffer right along with them.



With Gratitude and Hope,

Jeanne Gore
Coordinator & Co-Chair Steering Committee
National Shattering Silence Coalition
Email: coordinator@nationalshatteringsilencecoalition.org

Senator John Nutting
Email: jnutting2020@gmail.com

Joe Pickering, Jr.
Email: joepick@aol.com

Yaicha Provencher
Email: yprovencher@sandcastlemaine.org

​

Yaicha Provencher says she was never told about a long-term treatment program available in Maine, despite her ex-boyfriend's many hospitalizations.

The former girlfriend of a Poland man charged in the murder of his brother Thanksgiving morning said Maine’s failed mental health system is to blame for the tragic event.

Justin Butterfield, 34, who is charged with the intentional or knowing or depraved indifference murder of his brother, Gabriel Damour, 38, is expected to claim he was not in a criminally responsible state of mind at the time of the crime, according to his lawyer.

Yaicha Provencher said Monday at a press conference at the Maine State House that she had never been told about a state law that would have put Butterfield on a strict monitoring schedule to help manage his illness.

Four years ago, Butterfield began to exhibit signs of a brain disorder that would later be diagnosed as schizophrenia, Provencher said.

He experienced paranoia, visual and auditory hallucinations, she said.

​Butterfield has been hospitalized eight times since 2019, she said, seven times at St. Mary’s Regional Medical Center in Lewiston.

A Bangor man who spent years working in healthcare has formed a small committee urging lawmakers to stop brain disorder discrimination. 

Joe Pickering Jr. said Maine’s approach to illnesses such as schizophrenia, bipolar disorder, and substance abuse are being devalued and more community services should be made available.

Pickering spent more than 30 years in healthcare and said our society, our local government, and the nation as a whole need to stop separating mental, physical, and behavioral health from one another because he said the head and the body work as one.
“All of our illnesses get impacted from our head to our body. There is no such thing as physical and mental illness. It’s all one,” Pickering said.

Pickering watched his son, Christopher, a gifted basketball player, fight schizophrenia for years.

Christopher passed away in a fatal house fire in 2020, but Pickering said the son he knew died years before that.

He said more funding is needed for community health services for those with brain disorders like his son.

Jeanne Gore, who is a member of the Truth Tear Down This Wall Committee and the coordinator with the National Shattering Silence Coalition, agreed.

“As many as 80 percent of those with substance use disorder, or SUD, have a co-occurring brain disorder. That is the sad reality,” she said.