This entry was originally posted on the OSPIRG Foundation Blog

According to a new study (pdf), Oregon’s efforts to transform health care are not yet delivering on their potential to improve the consumer experience. The Consumer Confidence Project, a volunteer-led effort overseen by the Oregon Public Health Institute, with support from OSPIRG Foundation, has released a review that raises tough questions about the state’s approach to holding the health care industry accountable to the needs of consumers.

We all know that health care still costs too much and delivers too little. To their credit, Oregon policymakers have taken important steps in recent years to contain costs and improve quality, led by landmark reforms to the Oregon Health Plan, the state’s Medicaid program. These reforms created Oregon’s Coordinated Care Organizations (CCOs), with financial incentives designed to cut waste, spend tax dollars more efficiently and encourage the development of new ways of delivering care focusing on prevention and keeping people healthy.

To ensure that CCOs deliver cost savings without sacrificing patient care, the state regularly measures their performance using a set of accountability metrics. On that score, the news to date is mostly good: State data suggest that many CCOs are succeeding keeping costs down and improving quality in key areas like reducing unnecessary ER visits.

However, to serve their members and their public mission, CCOs also have an obligation to help their members navigate the health care system and provide accurate and complete information about how the CCO is structured and how decisions are made. If CCOs do not live up to their promise in these areas, progress in other areas may come at the expense of the consumer experience of care, and the public may have no way of knowing whether CCOs are using public dollars wisely.

Unfortunately, the state doesn’t measure and track CCO performance along these lines. To fill this void, the Consumer Confidence Project reviewed the publicly available information, both printed and online, and found that Oregon’s 16 CCOs are doing an uneven job at best of empowering their members and informing the public about their operations.

For example, they found that CCO websites and member handbooks have only incomplete information about a CCO’s benefits and services, and that members would generally have to consult both to get the full picture, a lengthy and frustrating task. This has been the focus of much of the media coverage of the findings so far.

More troublingly, though, the report found that Oregon’s CCOs are largely failing to provide meaningful transparency. CCOs, through providing Oregon Health Plan benefits at a local level instead of centralizing all decisions at the state level, were meant to be closer and more accountable to their members and the communities they serve, but few CCOs appear to be making an adequate effort to provide information about their decision-making processes and opportunities for the public to weigh in. For example, no CCOs provided any information about how members or the public could bring issues of concern before the governing board of the CCO, and few provided adequate information about their Community Advisory Councils. These councils were created to give local communities an opportunity to have a say in decisions that affect their health and how their tax dollars are spent, but that only works if the public knows about them.

Oregon deserves better. While these issues are of special concern to Oregon Health Plan members, CCOs are funded by public dollars, and all Oregonians should have the right to know how their hard-earned tax dollars are being spent. We urge all 16 CCOs, and state policymakers, to take a close look at the Consumer Confidence Project findings and work together to deliver better results.

Jesse Ellis O'Brien
Health Care Advocate
OSPIRG Foundation 

Since partnering with the Voices for Better Health project in 2014, I have spoken to nearly 500 older adults and people with disabilities. The stories I have heard are compelling, often heartbreaking, accounts of people struggling to stay healthy and in their community. It is these stories that we are working to bring to policymakers to make fundamental changes to Rhode Island’s health care system, especially for the most frail and vulnerable populations who are often overlooked and underrepresented in the health care debate. With the recent announcement of the Memorandum of Understanding between the federal Centers for Medicare and Medicaid Services and Rhode Island’s Medicaid program to begin a demonstration project to coordinate care for beneficiaries with both Medicaid and Medicare, there is change ahead.  The stories below share some of the challenges that need to be addressed.

Stories from the Field

The most pervasive and profound stories I hear relate to isolation, the lack of family support, and loneliness. Today’s families are often fragmented and far-flung, making it impossible for many older adults and people with disabilities to depend on relatives for support. This is why the health care system and community-based services network is so vitally needed to work in a coordinated way to provide support services.

Mary is 90 years old and owns a small duplex in need of repair. I met her through a Meals on Wheels (MOW) outreach campaign. She is bright and talkative. She was overjoyed when I came to her home to chat. Mary hadn’t spoken to another human being in over two weeks; that’s when her “friend” and caretaker left for vacation, canceling Mary’s MOW delivery service during her absence. Someone was supposed to come and help her with her daily activities, but never showed up, leaving Mary to fend for herself. Mary’s limited mobility makes it impossible for her to take public transportation. She desperately needs dependable social services, but she’s afraid she will lose her house if she applies. Mary lives on less than $750.00 a month, however, she receives no Medicaid, LTSS nor is she on the SNAP program. Meals on Wheels is the only program she participates in. Mary admitted that the food is just okay, it’s the daily interaction with the volunteers that Mary craves and is her saving grace.

Many other older adults I have met with are similarly struggling to cope with loneliness, isolation and lack of a support system. They live in private single or multi-family housing, have no means of transportation or family support. Many live with undiagnosed mental illness or dementia. They rarely get out, don’t belong to any civic group, organization, church or senior center, and as a result, many crave human interaction. The real challenge has been how to make an initial contact with more people like Mary. Many seniors live in private housing where their isolation may go totally unnoticed until a tragedy occurs. Reaching this population would give us a more complete understanding of the most fundamental needs of those aging in the community.

Discharge plans are another area where poor, often isolated, older adults all too easily fall through the cracks.

Amanda is recovering from an unusual mid-brain stroke. She spent more than week in the hospital and then several more in rehab. Although she was told she would be receiving at-home care, it never materialized. It took countless calls for Amanda to obtain durable medical supplies such as a bath seat, grab bars and a walker that were essential for her to live safely at home. By the time she was contacted regarding Home Based Health Care after nearly four months, she was well on her way to recovery. Discharge planning requires good communication between the patient, a family caregiver or friend, if available, and all health care providers involved to ensure the best possible outcomes for the patient.

Relationship-based Organizing as an Effective Tool in Health System Transformation

So why is reaching isolated consumers so important in transforming our health care system?  What are effective ways to do this kind of outreach? Here are strategies I’ve used in my work:

  • Relationship-based Organizing is an approach that starts by building connections between individual members of a community or interest group, such as a church congregation, senior centers and residences. Its initial building blocks are house meetings. These are purposeful public sessions where participants share their stories of important events in their lives. This is the first step in building trust and deeper relationships around common values. The second step after a series of house meetings is a research phase, which turns broad, often-voiced concerns into specific, immediate and winnable issues and develops proposals to address those issues.
  • The final step is to organize public action meetings with turnout of consumers and allies, where decision-makers are asked to give a public response to our proposals.

Organizing is distinct from advocacy in that you are teaching the community how to effectively come together to advocate for itself to change social policy. For poor and minority seniors, providing avenues for participation and ways to gain a “seat at the table” with those who have the authority to make change can be a new and empowering experience. Small victories build the community’s confidence that they indeed have power and encourage them to take on bigger challenges.

The Rhode Island Organizing Project (RIOP) is a community organization dedicated to promoting justice and the common good. RIOP’s organizing strategy places a premium on community outreach, participation and empowerment, leadership development, and grassroots organizing. RIOP’s most significant achievements include expanding state funding for affordable housing and leading an effort to redevelop one of Rhode Island’s poorest neighborhoods. RIOP began working on elder issues in 2009 and began conducting house meetings, listening to low-income seniors talk about their health care experiences and desire to age in place.

Marjorie L. Waters
Community Organizer
Rhode Island Organizing Project

A few weeks ago, the U.S. Preventive Service Task Force released a new proposal recommending that all women who are pregnant or within one year of giving birth be screened for depression. This is a positive development. Maternal depression encompasses the spectrum of depressive disorders that can affect mothers from the prenatal period to up to one year postpartum, including prenatal and postpartum depression, and postpartum psychosis. These disorders also frequently coincide with additional conditions and risk factors including other mental health disorders, substance abuse, chronic medical conditions, domestic violence and poverty, which can exacerbate depressive symptoms. Community Catalyst has recently completed a brief examining many of these issues and opportunities for positive policy changes.

Untreated maternal depression not only impacts the health of mothers, but also the health and well-being of their infants and young children. Maternal depression can negatively affect birth outcomes, parenting behaviors, and child development and school readiness. There are additional consequences for health plans including increased costs related to complicated deliveries, poor birth outcomes, and psychiatric hospitalizations. At least 15 million children in the United States are living with a parent who suffers from depression.

Maternal depression disproportionately affects low-income women and women of color, and they are also the least likely to receive treatment. Closing the coverage gap is an important step toward connecting depressed mothers and their children to health care coverage and additional services, but we also need to begin to think more creatively about transforming our approaches to maternal depression screening and treatment. For maternal depression treatment programs to have the greatest impact, providers must consider the needs of the mother as an individual and as a parent as well as the needs of her infants and young children, a concept known as a two-generation approach to care. The idea behind this model is that “…when opportunities for children and parents are addressed in tandem, the benefits may be greater than the sum of the separate parts.” Unfortunately, maternal depression is rarely considered within the two-generation context because health care for adults and children and for physical and mental health are frequently separated, at least in part due to lack of financial incentives for clinicians.

There are several services that already use a two-generation approach and are tailored to reach vulnerable, low-income families who face the greatest risk for maternal depression and its effects on children. These services offer excellent opportunities to incorporate maternal depression screening and referral to treatment. The Maternal, Infant, and Childhood Home Visiting Program, Head Start and Early Head Start Programs, Special Supplemental Nutrition Program for Women, Infants, and Children (WIC), and the Supplemental Nutrition Assistance Program (SNAP) could all be leveraged to increase depression screening and to refer mothers with depressive symptoms to clinicians and additional services. Two-generation approaches can also be employed in the clinical setting by eliminating the division between primary and mental health care and between adult and pediatrics.

The way we care for pregnant women, mothers, and children is a good measure of the success of our health care system as a whole. We have major deficiencies in the way we address maternal depression, and we must rethink the way we support affected women and families in need. Better screening is an important step forward, but it must also be linked to treatment and services that incorporate a two-generation approach.

For more on this issue, check out the full brief, “Maternal Depression: Implications for Parents and Children and Opportunities for Policy Change.”

Taylor Lauren Frazier
Community Catalyst Children’s Health Team

There is an oral health crisis in Indian Country and as a member of the Sault Ste. Marie Tribe of Chippewa Indians, I have seen it firsthand. People in tribal communities simply do not have access to the dental care they need, and as a result, children and adults suffer terribly with untreated tooth decay, live in pain, and are at risk for serious infections, even death.

However, an announcement from Swinomish Indian Tribal Community Chairman and NCAI President Brian Cladoosby at the National Congress of American Indians (NCAI) Mid-Year Convention could change all of that for tribal communities in the Pacific Northwest. The Swinomish Indian Tribal Community, exercising their right as a sovereign government, will be expanding their dental team to include Dental Health Aide Therapists (DHATs), also known as dental therapists. One of their members started training in Alaska as a DHAT just this past month.

Dental therapists have been successfully improving oral health in Alaska Native communities for more than a decade. They are practicing in 81 communities, most of them remote, and have increased access to culturally competent dental care for more than 40,000 previously underserved patients.  Dental therapists are reducing the need for emergency care for oral health and increasing preventive care delivered in communities.

Despite all of this success and overwhelming evidence that DHATs provide safe, high quality care, the American Dental Association (ADA) is fighting the expansion of dental therapist at every turn. In Alaska, they went so far as to file a lawsuit to stop DHATs from practicing. While the lawsuit failed to prevent dental therapists from practicing in Alaska, the ADA did not give up fighting the use of dental therapists. The ADA has tried to restrict the use of dental therapists to tribal communities in Alaska by funding state campaigns against dental therapists and by lobbying against funding for dental therapist demonstration projects.  

 Even though the ADA continues to publicly express their dedication to increasing access to dental services for tribal communities, it is clear that they are preventing them from using a dental therapist as a proven solution to increasing access to care. The consistent opposition shows that the ADA is dedicated to putting their interests ahead of tribal and community interests. They have successfully lobbied over the past five years to kill several bills that would have enabled state authorization of dental therapists in tribal communities and other high-need communities in Washington State   By restricting tribal communities’ ability to choose the best provider to deliver care in their communities, the ADA has taken away the rights of American Indian and Alaska Native communities to exercise their sovereignty and hire oral health care professionals who will address the deplorable oral health disparities in their communities across the nation. 

However, Chairman Cladoosby’s announcement makes it clear that the Swinomish Indian Tribal Community is refusing to let special interests determine the future of oral health care for its members. The Swinomish cannot wait any longer to modernize its dental team in order to improve oral health. While tribes nationwide have passed resolutions supporting dental therapists, the Swinomish have taken the boldest step yet by announcing that they will be training a dental therapist to practice in their community to expand access to care.

As American Indians, we need to refuse to let our rights and responsibilities to attend to the health and wellbeing of our community members be taken from us. We applaud Chairman Cladoosby in taking a stand for tribal sovereignty, and for his courageous leadership in bringing an innovative, proven effective solution to the oral health crisis to his community.

Kristen McGlaston  
State Advocacy Manager
Dental Access Project

Community Catalyst recently submitted comments to the Centers for Medicare and Medicaid Services (CMS) around proposed regulations that make sweeping updates to Medicaid Managed Care. This important opportunity helps ensure that millions of low-income Americans have a positive experience with their health care, especially as states are shifting more and more Medicaid beneficiaries towards managed care. Over half of all Medicaid beneficiaries nationwide receive most or all of their care from managed care organizations. A major focus in Community Catalyst’s comments was urging CMS to be aggressive in reducing health disparities. Our recommendations around anti-discrimination, network adequacy, quality of care and cultural competency seek to ensure that the inclusion and considerations of vulnerable populations are interwoven throughout the new regulations. By maintaining this focus, we can start to reduce health disparities and achieve our vision of health equity, in which everyone has a fair opportunity to reach their full health potential.

Anti-Discrimination. Medicaid primarily serves low-income individuals and families that often include people with multiple chronic conditions, substance use disorders  and/or behavioral health issues, and are disproportionately from communities of color. Any changes to the delivery of care for this group must take into account their needs and potential barriers to their care. To that end:

  • We applaud CMS for adding sex, sexual orientation and gender identity as protected categories. Adding these protections will help eliminate some barriers to accessing care by prohibiting discriminatory plan practices or treatment avoidance due to perceived discrimination.
  • We applaud CMS for adding disability as a protected category. Medicaid beneficiaries with disabilities are increasingly enrolled in managed care, and the protections outlined will help eliminate common challenges they face (e.g. lack of accessible information and services, discrimination in enrollment and difficulty navigating managed care).
  • We support revising the Institutions for Mental Disease (IMD) payment exclusion, but believe this proposal could be strengthened. The proposal to lift the exclusion of short-term (15 day) stays in IMD facilities is still not sufficient to support the medical needs of people with substance use disorders. CMS should authorize clinically appropriate lengths of stay for crisis residential services as opposed to time-limited stays.

Network Adequacy. Medicaid coverage alone does not guarantee access to health care. It is important that managed care beneficiaries have access to a sufficient number of all the types of providers and services promised to them in order to manage their health. Community Catalyst urges CMS to require states and health plans to guarantee network adequacy, particularly by:

  • Setting stronger, more specific network adequacy standards – Time and distance, appointment wait times, etc. – especially for rural areas, where provider access may be limited. Stronger network adequacy can address significant disparities faced by rural Americans, who are more likely to be older, lower income, living with disabilities and less healthy compared to urban and suburban populations; and
  • Including more types of Essential Community Providers (ECPs), as many of them have experience providing care for vulnerable populations.

Quality of Care. Driving the reduction of disparities and improving experience of care will require careful consideration of the populations being served, both through data collection and delivery of care. We recommend that CMS:

  • Improve data collection and reporting to include data stratified by race, ethnicity, primary language, gender identity, and sexual orientation. These data are vital for measuring success and for creating a long-term plan to improve health care quality for populations experiencing disparities.
  • Improve provider-patient interactions by incorporating tools to assess, manage, and reduce implicit biases among health care providers. Such actions could reduce health disparities by improving the quality of care experienced by beneficiaries of color. Implicit biases may also manifest themselves in areas besides race and ethnicity, such as gender and age.

Cultural and Linguistic Competency. Patients with limited English proficiency are more likely to skip or delay needed medical care and receive lower quality care. Too often, younger family members are enlisted to act as interpreters in medical settings, increasing the risk of miscommunication and medical errors. Removing language barriers between patients and providers (e.g. through access to trained medical interpreters) is a critical step in eliminating disparities in quality of care. We recommend that CMS require:

  • Uniform provider directories accessible in a variety of languages that include information on whether providers are accepting new patients, the language spoken by each provider, physical accessibility of the provider’s facilities, etc.
  • Free language access services available for all languages spoken by the lesser of 5percent of the enrollee population or 500 beneficiaries
  • Requiring managed care entities to offer services that ensure physical accessibility and culturally appropriate services for enrollees with disabilities

Although it is too soon to know how CMS will ultimately “makeover” Medicaid managed care, Community Catalyst feels confident that its recommendations will help advance health equity while transforming our health care system.

Maria Rios
Community Catalyst Health Equity Team