Health Care for All
Sometimes research takes you down a different path than the one you had planned. That’s what happened at Health Care For All (HCFA), a Massachusetts-based advocacy organization that works to ensure health care access, quality, and affordability for all Massachusetts residents. We believe that our findings and recommendations can positively influence mental health care outcomes in Massachusetts and beyond.
The Research Process
HCFA, funded by The Peter and Elizabeth C. Tower Foundation, sought to document the barriers to behavioral health care, particularly for individuals attempting to cope with mental illness and their families, providers, and other allies. We initially focused on insurance barriers, mostly relating to mental health parity laws. As we received input, we found that a key issue was something else: early barriers to getting care can have a significant impact on a person’s potential for recovery. (Download the report, “The Urgency of Early Engagement: Five Persistent Barriers to Mental Health Treatment, Care and Recovery in Massachusetts and the Search for Solutions.”)
It is in the earliest stages of mental illness that engagement can have the most effective outcomes, but where too often circumstances prevent people from getting the care they need. As a result, many individuals face an increased likelihood of months – and more often years – of untreated, or inadequately treated, mental illness.
Our year-long study of ongoing barriers to early mental health treatment, care, and recovery received meaningful input from several sources:
- More than twenty-five initial stakeholder interviews with providers, advocates, public officials, and nonprofit leaders
- Four focus groups of individuals with lived experience and two focus groups of providers
- A statewide online survey of individuals and family members who had sought mental health treatment in the previous three years
- Analysis of 2,000 call logs received by NAMI Compass, the resource helpline of NAMI Massachusetts
- Analysis of 300 call and email logs recorded by the Massachusetts Attorney General’s Office (AGO) related to mental health care
- A nine-person expert discussion group that included peers, family members, clinicians, advocates, and former public officials.
Five Persistent Barriers to Care
From those inquiries, we identified five consistent and persistent areas of barriers to care, treatment, and recovery: knowledge, attitude, insurance, price, and delivery.
#1: Knowledge barriers
A significant lack of knowledge about mental illness and the resources available for treatment and support pervade every step of the overwhelming journey to recovery. For many individuals, a lack of knowledge prevents them from recognizing that they need help. After the need for help has been acknowledged, lack of knowledge means not having an idea about where to turn for help and how to locate available services, navigate the insurance system, and understand insurance benefits.
#2: Attitude barriers
Due to external prejudices and internal shame, individuals often delay, avoid, and even dislike the help they need. The name usually given to this debilitating prejudice and shame is stigma, but using that label often ends rather than starts a conversation. When fully unpacked, the phenomenon of stigma reveals deep and varied barriers to engagement.
#3. Insurance barriers
The difficulties people face in navigating the complexities of insurance coverage – including mental health coverage – are particularly unfortunate given Massachusetts’ gains as a state with near-universal coverage. As they attempt to access care, consumers inevitably contact their insurance companies. In that capacity, insurers could serve as allies and guides to their members. Instead, most respondents viewed their insurers as adversaries, a negative relationship that is compounded by the failure to fully implement mental health parity. In addition, insurers have demonstrated increasing resistance to certain approaches, particularly residential treatment.
#4. Price barriers
The aggregate price of recurring co-pays (versus the occasional co-pays for seeing one’s primary care provider, for example), high deductibles, and the small-and-growing-smaller pool of mental health providers who accept insurance make mental health care prohibitively expensive for many people. In short, they all add up. Furthermore, insurance coverage for residential treatment is hard to access and the price is out of reach for most of the population.
#5. Delivery barriers
Even when insurance coverage applies, finding effective treatment is much more difficult than it should be. This is affected by factors such as a shortage of inpatient beds, shortage of providers, inexperience of the behavioral health workforce, the challenges of accessing care when one’s thinking and emotional state are impacted by mental illness, identifying a provider that “fits” the needs and preferences of people living with mental health conditions, and the lack of post-hospitalization care and supports. And, of course, issues of cultural and linguistic competency are often at play.
Summary of Recommendations
- To overcome barriers, Massachusetts should help promising programs grow to scale, such as the INTERFACE referral service and Bridge for Resilient Youth in Transition. Other programs deserve consideration while still others are waiting to be discovered.
- Massachusetts should commit to closing the knowledge gap by creating a state-of-the-art resource helpline and promoting its use statewide.
- Massachusetts should expand the training and employment of people in peer support roles. One major step in that direction would be MassHealth payment for services performed by Certified Peer Specialists.
- Massachusetts should require increased transparency of insurance, improved customer relations, and safeguards to guarantee that people receive the full measure of the mental health coverage to which they are entitled by their insurance policies.
- The services of Emergency Services Programs should be available to all. To that end, all commercial insurers should include ESPs as an essential part of their behavioral health coverage.
- The comprehensive approach to children’s mental health, embodied by the Children’s Behavioral Health Initiative, should become a universal feature of commercial insurance.
Health Care For All is excited to be working with our partners to break down barriers to treatment, care, and recovery. After all, health care for all must include mental health care. As we examine in the report, there are a number of pieces of legislation pending that have great potential to expand and increase access to mental health services, and we are enthusiastic participants in that debate and process.
The Rest of the Country
Other states should research their own barriers to treatment, care, and recovery. While many access barriers are similar across state lines and considered “well known,” there is power in having thorough research and solid documentation of these barriers to rally people’s attention to the problems and begin looking for solutions. I hope that advocates elsewhere will take our examples from Massachusetts to examine the landscape in their own states for similar “ingredients” that can yield a better system.
Advocates in other states could adapt and adopt our recommendations in a more general sense. I hope others will adopt the “search for solutions” approach that we use in the report and that advocates in other states will ask, “What are the programs that work here?” and “What are the public policy solutions under consideration in my state that we can champion?” I’m optimistic that every state can make improvements that enhance the care, treatment, and recovery – and support earlier engagement – of residents with mental health conditions.
- What have you found to be the persistent barriers in your state?
- What promising solutions to these barriers have you found?
Natalie Litton is Health Care For All’s Policy and Project Coordinator. In this role, Natalie provides research, analysis, coalition coordination, event planning, and overall administrative support for HCFA’s children’s health, public health insurance, and payment and delivery system reform work. Natalie co-authored HCFA’s recently released report, “The Urgency of Early Engagement: Five Persistent Barriers to Mental Health Treatment, Care and Recovery in Massachusetts and the Search for Solutions,” which was the culmination of a comprehensive assessment on the state of access to mental health services in Massachusetts. Before coming to HCFA, Natalie worked at the National Alliance on Mental Illness of Massachusetts (NAMI Mass) where she assisted with the Criminal Justice Diversion Project, legislative advocacy, and fundraising efforts. Natalie received a Bachelor of Arts degree with Honors in Political Science and History from Swarthmore College.