You are the Executive Director of the Mental Health Association of Rhode Island. For those who may not be familiar with the MHARI, please give an overview of the organization and its services and objectives.
Founded in 1916, MHARI’s mission is to promote and nourish mental health through advocacy, education, and policy development. Our vision is that all people living with mental illness will be treated with dignity and receive all the support, treatment, and services needed to live their best lives. MHARI is the mental health community’s watchdog. We listen to, speak for, and advance the interests, needs, and rights of people with mental health conditions. We advocate in five general areas: (1) holding insurers accountable to state and federal mental health parity laws, particularly around reimbursement rates (2) preventing the incarceration of people with serious persistent mental illness (3) establishing an Olmstead Plan (4) increasing diversity, equity and inclusion in the behavioral healthcare system and (5) workforce development.
One of MHARI’s recent major efforts was a report, “The State of Behavioral Healthcare in R.I.,” completed in partnership with Brown University’s Initiative for Policy. What is the state of behavioral healthcare in the state?
That report was published in late 2020, about six months into the pandemic. We are now facing a systemic crisis. Demand for services has increased, while our supply of providers has decreased.
Anecdotally, we know there are waitlists for every level of care. Unfortunately, we can’t cite hard data because the data does not exist. Currently, the state does not systematically collect, analyze and publicize waitlist data for all levels of care. There is no law requiring providers to submit weekly or monthly waitlist tallies to the state, which is surprising considering the public health crisis we are facing.
Decades ago, Rhode Island had a system of care that was a national model. What happened to bring us to where we are now?
In the 1960s, Rhode Island passed a law that established community mental health clinics. Communities that developed community mental health clinics and raised money at the local level received matching funds (dollar for dollar) from the state. Rhode Islanders who were discharged from the Institute of Mental Health were referred to these clinics. In the 1970s, the Department of Mental Health, Retardation and Hospitals (now called Dept. of Behavioral Health, Developmental Disabilities and Hospitals) engaged in a “Transfer Contract” program. It required some of the funding used to hospitalize a person to follow them into the community upon discharge, where they would receive services and possibly supportive housing. Deinstitutionalization increased the demand for community services and group homes.
The state no longer has a “Transfer Contract” program in place. Its investment in supportive housing and community services has declined over the past several decades, and it has overly relied on Medicaid reimbursement rates to cover costs. Last year, our leaders made a good start toward rebuilding the system. In its 2023 Fiscal Year Budget, the state invested nearly $50 million from its own coffers and over $80 million from federal sources (mostly ARPA funding) on behavioral healthcare. We need our leaders to prioritize behavioral healthcare again. We need the state to continually invest in the system, just as we continually invest in schools. We need the state to hold Medicaid and commercial health insurers accountable to federal and state parity laws. For years, Rhode Island has let insurers pay unfairly low reimbursement rates to behavioral health providers. Many providers lose money when they accept insurance because reimbursement rates don’t cover the full and true costs of providing a service. Poor rates discourage providers from participating in insurance networks. Some move their practices to nearby states where the rates are higher. Ultimately, it’s the patients who suffer on waitlists because there are too few providers available. As we wait, our conditions worsen.
MHARI is very active in the Rhode Island General Assembly. What are some of the recent successes?
MHARI leads the Olmstead Committee, a sub-committee of the Governor’s Council on Behavioral Health. Our goal is to persuade state leaders to establish an Olmstead Plan in partnership with community stakeholders. Olmstead refers to the 1999 U.S. Supreme Court ruling that affirmed states’ legal obligation to ensure that people with disabilities can live, work and receive services in the least restrictive setting of their choosing. States create Olmstead Plans to demonstrate how they intend to comply with the ruling. Rhode Island is one of 6 states that does not have an Olmstead Plan. In July 2022, after years of advocacy and community organizing, Governor McKee committed to establishing a Plan in Rhode Island.
In 2022, MHARI organized stakeholders to pass laws revising outdated licensing requirements for mental health counselors, social workers and marriage and family therapists. The reforms will allow more qualified professionals to enter the field. We supported the OHIC rate review legislation and now serve on its Health and Human Service Rate Review Advisory Council. We supported legislation to establish Certified Community Behavioral Health Clinics (CCBHC) and helped persuade lawmakers to do so with fidelity to the evidence-based federal model.
And what can we expect in this session?
MHARI will partner with Sen. Miller and Rep. Tanzi to introduce legislation raising commercial insurance reimbursement rates. This one-time rate increase is an emergency stop-gap measure to mitigate the crisis we are facing. OHIC’s rate review report is due in the fall of 2023, but the mental health community cannot wait for its findings. We need to prevent our remaining providers from moving their practices out of state or closing their doors altogether.
For centuries, stigma has surrounded mental illness. Does stigma continue in 2023?
Sadly, yes. Society tends to blame people for their mental illness, as though it’s a choice or moral failing. Shame and stigma cause people with mental illness to avoid or delay treatment, and that would never happen if their ailment was medical in nature. Additionally, some cultural norms make it almost impossible to seek help when needed. Most surprisingly, research has demonstrated how medical professionals’ attitudes about people with substance use disorders impact the delivery of care and patient outcomes.
What can Rhode Islanders do to help reduce stigma, which can prevent people living with behavioral health challenges from seeking treatment?
Treat medical and mental health conditions equally. Express compassion for those who have mental illness. Talk openly about your own struggles with mental health to normalize it, and do so with a sense of empowerment. When someone you know is struggling, express support and offer to help connect them to services. Choose your words wisely. Language matters. People have or live with mental illness; we are not the illnesses themselves. For example, please don’t say “she’s bipolar.” Instead, “she has a bipolar condition.”
What advice would you offer people who live with these challenges but have not sought treatment?
About 1 in 5 adults live with a mental health condition. We are not the fringe of society, we ARE society. There’s no shame in having a mental health challenge and seeking help. I can say from personal experience that it’s brave and empowering to pursue treatment. Treatment will improve your relationships, your life, and overall health. I know that change is scary, but there is no growth without discomfort.
And what advice for their families and friends? Often, these people know that someone is suffering but are unsure what to do.
Compassionately express concern and love. Do not shame or blame. Ask how you can help and support them. Ask them if you can help find support and services if the person is not already in care. Reassure them that you will be there for them. Share your own mental health story, if you have one. And take care of your own mental health.
Give us a bit of your background – the road you travelled to become head of MHARI.
I have always identified as a social justice activist. Over twenty years ago, I moved to Rhode Island from South Florida to work for the Rhode Island ACLU. From there, my career trajectory bent toward health and human services. I have worked as a case manager for adults living with HIV/AIDS, a fundraiser for a homeless shelter, and a program manager at an organization helping people with eating disorders. I assumed this role at MHARI in 2019.
You live with anxiety and depression. How does that inform your work?
I survived various types of trauma in childhood and have lived with anxiety and depression for most of my life. Symptoms of depression and anxiety look different in kids compared to adults, so I never got help until I got down to 80-something pounds because of anorexia nervosa at age 17. The gift of anorexia is that people can see you are not well. I stayed in residential treatment for four weeks, partial hospitalization for four weeks, and outpatient therapy for 15 months. Since then, I have been on a recovery journey. Therapy has taught me skills and practices to recondition my central nervous system to feel safe. Some days are easier than others, of course. I do this work because I have been extremely lucky to have insurance that covered all the care I needed when I needed it. Today, that is not true for many Rhode Islanders. I fight for their right to treatment and the chance to make a full recovery. I also fight for the people with serious persistent mental illness, such as medication-resistant schizophrenia. These are our most vulnerable Rhode Islanders. They deserve protection and care. When the state fails to provide supportive housing and community services, people with disabilities often become homeless and incarcerated for crimes related to homelessness. The fact that the prison is our largest psychiatric institution is shameful.
May is Mental Health and this year, it kicks off with an event at 2 p.m. on April 27 at the State House. The public is welcome. What can we expect on April 27 – and during the month of May? We will hear stories of recovery and hope from patients and family members. Barbara Morse of Channel 10 News will participate again. MHARI will present awards to two legislators and one Mental Health Hero. After the program, we will have an opportunity for Rhode Islanders to meet their legislators and share their stories. All are welcome. Please wear blue in solidarity with the mental health community. Starting in April, MHARI’s website will have a calendar of community events taking place in May.
Anyone in immediate danger should call 911.
Call 988 if you are having thoughts of suicide or in crisis. 988 is free, available 24/7, and confidential.
● BHLink: For confidential support and to get connected to care, call (401) 414-LINK (5465) or visit the BHLink 24-hour/7-day triage center at 975 Waterman Ave., East Providence. Website: bhlink.org
● United Way of Rhode Island offers free and confidential assistance for a variety of needs. Call 211.
● Butler Hospital in Providence provides inpatient and outpatient treatment and care for adolescents and adults. To get direct help and guidance about mental health services, call the Behavioral Health Service Call Center, available 24/7 at (844) 401-0111 or visit them on the web at https://www.butler.org/
● Bradley Hospital in East Providence provides expert, family-focused care to children and adolescents with psychological, developmental and behavioral problems through a wide range of inpatient, outpatient, residential and partial hospital programs. https://www.lifespan.org/locations/bradley-hospital
● Lifespan’s Psychiatry and Behavioral Health services span and integrate the activities of Rhode Island Hospital, The Miriam Hospital, Bradley Hospital, Newport Hospital and Gateway Healthcare. For Lifespan outpatient psychiatry treatment, call East Greenwich: 401-606-4415; East Providence: 401-606-3711.
● Kids’ Link RI: A program offered in collaboration with Gateway Healthcare, Lifespan, Hasbro Children’s Hospital and Bradley Hospital, Kids’ Link RI is available 24 hours a day, seven days a week to help triage children and youth in need of mental health services and refer them to treatment providers. To contact Kids’ Link RI, call 1-855-543-5465. https://www.lifespan.org/centers-services/kids-link-ri