Wednesday, March 10, 2021

Projects to end the Institutional Bias

New Discussion Draft of Bill to Make HCBS a Mandatory Medicaid Benefit

This week, Representative Debbie Dingell (D-MI), Senator Maggie Hassan (D-NH), Senator Bob Casey (D-PA), and Senator Sherrod Brown (D-OH) released a discussion draft of the HCBS Access Act, which would end the Medicaid program’s bias towards institutional care by requiring states to cover home and community-based services (HCBS). The HCBS Access Act would also enhance access and address inequities by creating a higher baseline set of services and other minimum requirements for all states and investing in the infrastructure and the workforce providing HCBS. 

The sponsors posted a memo seeking stakeholder input on the discussion draft text through April 26, 2021. Justice in Aging will share more about the discussion draft and our feedback soon. 

Bill Introduced to Make Medicaid Money Follows the Person Permanent  

Last Friday, Representatives Upton (R-MI) and Dingell (D-MI) reintroduced a bill to make the Medicaid Money Follows the Person (MFP) Program permanent (H.R.1880). This bill followed reintroduction of the bill to permanently authorize spousal impoverishment protections for people eligible for Medicaid HCBS (H.R. 1717). Both provisions are currently authorized through 2023 and are important to increasing access to HCBS and ending the institutional bias. 

Read more about MFP and spousal impoverishment protections.

Activists meet at the US Capitol


Monday, March 1, 2021

EVERYONE IS WORTH A SHOT

 EVERYONE IS WORTH A SHOT:

EQUITABLE COVID-19 VACCINE DISTRIBUTION 

POLICIES AND PRACTICES


INTRODUCTION

As the COVID-19 vaccination program in the United States has rolled out, there has been a significant public health and policy emphasis on vaccine distrust (often referred to as vaccine hesitancy), particularly in Black and brown communities. For many months prior to the first vaccines becoming available, headlines warned that distrust of the medical system generally and of the coronavirus vaccines in particular by people of color could be a barrier to bringing an end to the pandemic, never mind that polling data shows the highest levels of vaccine distrust among white Republicans. Nonetheless, trusted community-led organizations in Black and brown communities and public health officials began developing messaging to increase confidence in the vaccine in communities of color, and already there are some terrific messaging campaigns in operation.


However, now that the vaccine program is well underway, we are finding the same inequities in vaccine distribution that we find in the health system as a whole. In every state in the country, white people are getting vaccinated at higher proportions than people of color, despite the fact that the COVID-19 virus has had a far more significant and devastating impact on Black and brown communities. Indeed, it appears that once states moved beyond vaccinating health care workers and nursing home staff and residents, communities nationwide seem have been entirely unprepared to implement a vaccine distribution system that can reach the people most impacted by the virus. To continue to exclusively discuss vaccine distrust while Black and brown people, who are quite literally dying to get the shot, can’t access it, is ludicrous. 


This outsized focus on vaccine distrust also overshadows the fact that equitable vaccine distribution and vaccine confidence must work hand in glove. Vaccines must be distributed equitably, with a focus on reaching individuals most at risk of infection and serious illness and communities most devastated by the pandemic. The more people see friends, family and others who look like them getting vaccinated with no ill effects, the more confidence people will have in the vaccine. Furthermore, addressing equitable access to the vaccine helps get at the root cause of racist barriers to care, which will then also have a positive impact on vaccine confidence. In combination with a strong communications program designed to build all aspects of vaccine confidence, equitable distribution is key to reducing illness and loss of life and to ultimately achieve herd immunity.


The purpose of this document is to help move the conversation away from an exclusive focus on vaccine hesitancy by focusing on equitable vaccine distribution, which can both address barriers to care and improve trust. By reaching out to our network of state and local consumer health care advocates through both a survey and a listening session, we have compiled a list of policies and practices that state and local advocates can push for to improve equitable vaccine distribution in their state and/or community. We acknowledge that no advocacy organization can possibly tackle all of these suggestions. Furthermore, some of these policy ideas will be inappropriate for some communities. Our goal is to offer a robust menu of possibilities. Advocates can then select the ideas that would most improve equitable distribution in their state or community.

HOW TO USE THIS DOCUMENT

We have organized the document into a variety of topics related to vaccine distribution. We have provided links to examples or further information where available. We recommend that readers scan the different topics to identify the obstacles to equitable vaccine distribution most relevant to their communities. The intention is that this will be a living document, and we will happily add new suggestions as we hear about them. We should also note that we compiled this document quickly given the urgency of the issue. However, speed brings errors, so it is entirely possible and even likely that we have made suggestions in this document that are incomplete or simply wrong. We hope that our partners will point these out to us so we can make corrections, as well as add any additional suggestions. Please contact Mehreen Kahn (mkahn@communitycatalyst.org) with suggestions for how we can improve the document.


Finally, we would like to thank our partners at the Healthcare Value Hub, who compiled reams of material on this issue, as well as the many state and local advocates who participated in our survey and listening session and who forwarded us materials on this issue. This document would not exist without them. We hope you find it useful.


THE AMERICAN RESCUE PLAN

The American Rescue Plan (ARP), which was signed into law by President Biden on March 11, 2021, includes significant funding that can help to improve vaccine distribution. Advocates should be aware that these dollars are coming – and quickly – and be prepared to monitor and advocate for the most strategic use of this funding. Key provisions of the ARP related to vaccine distribution include:


  • Mandated coverage of vaccines and treatment – The ARP requires coverage of COVID-19 vaccines and treatment without cost sharing for Medicaid and CHIP beneficiaries throughout the public health emergency and for one full year after the emergency has ended. States can also choose to provide COVID-19 vaccines and treatment to uninsured individuals, in exchange for 100 percent federal matching rate for these services. Advocates should push their Governors to take advantage of this option, which can insure vaccination and treatment for undocumented immigrants, among other populations.

  • Public health workforce – The ARP includes $7.66 billion to strengthen the nation’s workforce at public health departments at the state, local and territorial levels. A recipient public health department can use funds for personnel costs, personal protective equipment (PPE), certain data-related and other types of technology, related administrative costs, reporting requirement costs and sub-awards to local health departments. Advocates can push for policies that use these funds to improve equitable vaccine distribution, among other priorities.

  • Community Health Centers (CHCs) – The ARP provides $7.6 billion to CHCs, which must be used for COVID-19-related purposes. This provides state and local advocates with an opportunity to expand the role of CHCs in vaccine distribution, which is likely to improve equity.

  • Tribal Health – The ARP provides $6.094 billion for tribal health programs through the Indian Health Service (IHS), including COVID-19 vaccines, testing, contact tracing and infection control as well as support for telehealth infrastructure and health workforce. Advocates can continue to support vaccine distribution in Tribal lands and amplify their success


DATA COLLECTION

Data collection presents a conundrum for advocates. The only way we will know if vaccine distribution is equitable is if we collect disaggregated data on who is getting vaccinated. However, data collection can create barriers for individuals who fear misuse of that data, such as sharing data with U.S. Immigration and Customs Enforcement (ICE) for deportation purposes. Advocates working on data collection efforts should be in regular communication with community partners to ensure that data collection is implemented in a way that doesn't create unintended barriers. Policy/practice ideas include:


  • Provide grants to trusted partners and community-based organizations that could both educate people about the importance of data collection and collect data at vaccination sites.

  • Ensure clarity about how people’s personal data will be used, both in vaccine communications and at the vaccination site. Individuals who refuse to provide personal data should not be turned away. 

  • Establish other data metrics, such as percentage of vaccination sites in communities of color, distance traveled to get the vaccine, vaccine sites accessible by public transit, etc. 

  • Require states to collect racial, ethnic and other demographic data. Data should be publicly available and updated every weekday, with appropriate privacy safeguards in place.

  • Establish a vaccine equity metric that will hold the state accountable to equitable vaccine distribution.

  • Require states to use the designation MENA (Middle Eastern and North African) to identify Arab populations, which are presently not visible in most demographic data.

  • Include non-binary gender options on data collection forms that ask about gender.


COMMUNICATION

Generally speaking, communication from state and local governments about the vaccine and its availability needs to improve. In addition, communication plans must take into account an emerging perception that one vaccine is better than another to avoid “vaccine shopping,” or the perception that some populations are being given access to a less effective vaccine. Some policy/practice ideas include:


  • Use a variety of media, including social media, ethnic media, traditional media and mainstream media. States can also employ phone banking and door-to-door canvassing. In addition, state or municipal emergency alert systems or reverse 911 infrastructure can be used to notify people of vaccine availability.

  • Messaging should be culturally competent and available in a variety of languages.

  • Vaccine distrust is not just about the safety of the vaccine itself. There is also financial distrust – people worry they will be asked to pay or receive huge bills afterwards. There is also legal distrust – undocumented people worry that their data will be shared with ICE and used to deport them. Vaccine messaging must address all of these kinds of vaccine distrust to reach people equitably.

  • States must be clear about why there is a law enforcement or military presence at vaccination sites, and what that presence will and won’t do. Under no circumstances should ICE personnel be at vaccination sites, and this should be publicized widely.

  • Center for Health Progress in Colorado has developed a good FAQ document for immigrant populations in English and Spanish that is being utilized by nonprofits, local, and state government. Others could emulate these materials.

  • States must improve communication about who is eligible for the vaccine. Presently, that communication is often unclear and inconsistent.


SCHEDULING VACCINE APPOINTMENTS

Statewide online sign-up portals are needed – otherwise people have to juggle reaching out to multiple different places simultaneously. However, these portals are famously difficult to use across the country. They are often poorly designed and full of glitches, and even when they work properly, they require both fast broadband internet access and hours of time spent trying to schedule an appointment. These requirements disadvantage precisely the individuals that need the vaccine the most. Furthermore, the websites are often only available in English, and it appears that almost every web-based portal in the U.S. is in violation of ADA accessibility requirements. Policy/practice ideas include:


  • Make web portals accessible to people with visual and other disabilities.

  • Provide an adequately staffed telephone sign-up system

  • Provide grants to Community-Based Organizations (CBOs) to help schedule appointments for individuals without internet access or who have other barriers to using online portals.

  • Fund Community Health Workers (CHWs) to schedule vaccine appointments for their patients. Note that CHWs can also help to address vaccine distrust.

  • Offer text messaging vaccine sign up.

  • Provide a pre-registration sign up program that will allow people to sign up and get notified when they’re eligible. 

  • Make vaccine appointments available outside of regular business hours on evenings and weekends.

  • Partner with CBOs to fund canvasing campaigns with vaccine sign up information. Note that programs like this could also help to address vaccine distrust.

  • Fund Navigator programs, modeled on ACA Navigator programs, that help people sign up both for a vaccine and for health insurance. 


REQUIRING DOCUMENTATION

Like data collection, documentation presents advocates with conundrum. Documentation is important. It helps us to understand who has the vaccine and how we are doing on equitable distribution. Collecting insurance information helps vaccine providers recoup their costs. Requiring certain kinds of documentation can also help to combat the widely publicized examples of line jumping, which has been one of the causes of inequitable distribution. However, documentation requirements can also create obstacles to vaccination, and contribute to vaccine distrust among the very populations of people who most need the vaccine. Advocates must encourage policymakers to balance these two needs in communications about the vaccine, at vaccine sites and in designing documentation requirements. Policy/practice ideas include:


  • All signage and communications about the vaccine should make it clear, in multiple languages, that there is no charge for the vaccine. A sample statement could look something like this:

    • The vaccine is completely free and having insurance or a social security number (SSN) is not required to receive it. For those with insurance, providers can collect an administrative fee for this service from your insurance. To this end, we request your cooperation by providing insurance information and an SSN if you have it. 

  • Allow for no documentation - The Colorado Department of Public Health and Environment released a letter to providers stating that they cannot require people to provide proof of identification in order to get vaccinated. They may ask for name, date of birth or address, but can’t require an individual to present a state-issued or other government-issued ID. Similarly, the Massachusetts Department of Public Health provides answers to frequently asked questions, one of which explains that an ID is not necessary to get a vaccine. They do instruct people to bring IDs if they have them, but state that not having an ID will not prevent them from receiving a vaccine. 

  • Ask people to sign a form indicating that they meet the eligibility requirements and let that suffice for documentation.

  • There should be flexibility in the documentation required. While a driver’s license can help with demonstrating eligibility by age, not everyone has a driver’s license, and undocumented immigrants are expressly prohibited from having them in many states. Alternatives to a driver’s license should be available. 

  • Where residency documentation is required, a piece of mail can be used as an alternative to a driver’s license. 


TRANSPORTATION

Mass vaccination sites are often inaccessible to individuals without an automobile. Again, this disadvantages precisely the people who most need the vaccine. Even vaccination sites in more accessible locations, such as Community Health Centers (CHCs) or neighborhood-based pharmacies, can present transportation challenges for some people. Policy/practice ideas include:


  • States can permit Medicaid enrollees to use the Medicaid Non-Emergency Medical Transportation (NEMT) benefit to access transportation to get vaccinated. States can also make accessing this benefit easier for Medicaid enrollees. Massachusetts has done this by allowing enrollees with any type of Medicaid coverage to use the benefit and by allowing people to request services directly without having to go through a health care provider. Arizona announced a first-in-the-nation initiative that will make it easier for Medicaid members to get transportation to drive-through COVID-19 vaccination appointments. The state is reimbursing (NEMT) providers for driving eligible Medicaid members to and from their COVID-19 vaccination appointments, including reimbursement for time spent waiting during the drive-through vaccination process. 

  • States can partner with ride sharing companies, such as Lyft or Uber, to get people to vaccine appointments.

  • Entities organized specifically to address the health needs of vulnerable populations can be required to provide transportation to vaccination sites for enrollees. The District of Columbia’s Managed Care Organizations, for example, cover all transportation free of charge to and from all vaccination appointments. Program of All-Inclusive Care for the Elderly (PACE) programs and programs designed specifically for dually eligible individuals can be required to include transportation to and from vaccination sites for their members.

  • Community Health Workers (CHWs) can be hired to both schedule appointments for their patients and to arrange transportation to and from the vaccination sites.

  • States can offer vaccines to otherwise ineligible individuals who drive eligible people with transportation challenges to mass vaccination sites.


ELIGIBLE POPULATIONS

The initial priority groups for vaccination – health care workers as well as nursing home residents and staff – made a lot of sense. It also made sense to target older adults at the outset. However, states and the Centers for Disease Control and Prevention (CDC) could do more to achieve a more equitable targeting strategy. Policy/practice ideas include:

  • The CDC should use the CDC Social Vulnerability Index (SVI) to allocate vaccines to states, but states can also develop distribution plans that more closely adhere to the SVI. The SVI was developed in 2011 by the CDC for disaster management to identify communities that need support before, during and after public health emergencies, and states could develop allocation plans that reflect the share of disadvantage, or the proportion of residents that are worse-off. States can also use the US Area Deprivation Index (ADI) to allocate vaccines at the local level. Alaska, for example, is using the ADI to identify geographic areas that experience higher levels of deprivation to ensure more equitable vaccine distribution.

  • Use census data to identify zip codes with large populations of people of color and locate vaccination sites there, reserving slots for residents of that zip code. Alternatively, open these slots to people in the affected zip code first, and to the general public later.

  • Set up mobile vaccine clinics in neighborhoods/census tracts with high populations of communities of color and others most impacted by the COVID-19 virus, again reserving slots for residents of those neighborhoods.

  • Set aside 40% of vaccines for the hardest hit communities.

  • Distribute vaccines directly through Native American tribes and Indian Health Service clinics, reserving shots for Native people. In areas where this is already happening, Native American populations are getting vaccinated faster.

  • The successful roll out of the initial vaccine program focused on two workplace environments that were extremely high risk – hospitals and nursing homes. States could build on that success by developing workplace-based vaccine programs that focus on high-risk work environments. See “Workplace Strategies” below for more information. 

  • Individuals dually eligible for Medicare and Medicaid coincide precisely with the populations most vulnerable to the COVID-19 virus. Fortunately, since passage of the ACA many states have developed specific health care programs for dually eligible people. These programs, which include Dual Eligible Special Needs Plans (D-SNPs), PACE organizations and Medicare-Medicaid Plans (MMPs), provide the perfect infrastructure for vaccine distribution, and states can require these programs to prioritize vaccination among their members and put the supports in place dually eligible individuals need to access the vaccine. Indeed, CMS has issued a memo to these plans outlining these opportunities. Advocates should use this memo in their advocacy. 

  • While specific morbidities have been prioritized in the CDC protocol, this could be fine-tuned to focus on people with disabilities. For example, people with Intellectual and Developmental Disabilities (ID/DD) are not prioritized, despite having a very high virus mortality rate. States could prioritize people with ID/DD and other disabilities through existing Independent Living Centers, group homes, adult day cares and other infrastructure. Please note that these programs should include caregivers for people with disabilities to ensure the safety of this population.


LOCATING VACCINATION SITES

On its face, mass vaccination sites seem like a good idea. They allow large numbers of vaccinations, all the while keeping people socially distanced. However, the implementation of this approach is a direct cause of many of the vaccination disparities we are seeing. These sites almost always require an automobile and are frequently located in suburban or rural areas. Rather than putting all of their eggs in the mass vaccination basket, states should couple that approach with more targeted vaccination clinics designed to reach the populations most at risk. Policy/practice ideas include:


  • Set up mobile or pop-up vaccination clinics.

  • Set up partnerships with Community-Based Organizations (CBOs) that reach targeted populations to conduct neighborhood-based vaccination clinics.

  • Distribute vaccines through religious congregations, perhaps as part of or directly before or after services or in partnership with other institutions. Congregations can help arrange transportation for congregants. 

  • Open vaccination sites at food pantries.

  • Locate vaccination sites at pharmacies serving neighborhoods of color, or at pharmacies serving rural areas. 

  • Allocate an additional 20% of doses for the hardest hit communities. 

  • Send vaccine “strike teams” to locations that will reach key populations, such as group homes, senior housing or public housing developments. 

  • Distribute vaccines through CHCs, reserved for CHC patients. Note that special grants or other programs for CHCs to provide vaccines should NOT permit hospital systems to apply for those grants – this defeats the purpose of reaching specific populations. 

  • States should develop a strategy for reaching people who are homebound. Using existing home 

visiting infrastructure, such as medical house calls, visiting nurses, or even programs like Meals on Wheels, can help reach this population. 


A word about law enforcement. While a law enforcement or even a military (such as the National Guard) presence at vaccination sites can be reassuring to some, it can also be very threatening to many people, including many of the populations that need the vaccine the most. States should think long and hard about including a law enforcement presence at vaccination sites, and be clear in their communications about why law enforcement – or the military - is there. Under no circumstances should ICE personnel be at vaccination sites, and this should be publicized widely in multiple languages.


WORKPLACE STRATEGIES

The successful roll out of the initial vaccine program focused on two workplace environments that were extremely high risk – hospitals and nursing homes. States could build on that success by developing workplace-based vaccine programs that focus on individuals in high-risk work environments. In addition, states should create workplace policies that make vaccines easy for people to get. Policy/practice ideas include:


  • Require all employers in the state to provide employees with paid sick leave to both get the vaccine, and to recover from the common side effects that sometimes occur the day after vaccination.

  • Jails and prisons have been super-spreader environments since the beginning of the pandemic. Vaccination programs focused on jails and prisons that include both employees and incarcerated individuals would target very high-risk populations, while simultaneously helping to reduce viral spread in the communities surrounding these facilities. 

  • Meat packing plants also seeded much of the early pandemic spread in the U.S. Employees of these facilities should be vaccinated immediately.


Other workplace-based programs can target essential workers, whether there are prioritized for eligibility or not. These include:


  • Grocery store workers

  • Public transit drivers

  • Home care workers, personal care attendants, visiting nurses

  • Domestic workers (nannies, house cleaners)

  • Teachers and day care workers

  • Firefighters and Emergency Medical Technicians (EMTs)


ADDITIONAL RESOURCES