Insights and Advocacy

This new website section will feature ways to engage in policy changes that can improve living conditions and health.

Advising the government on advancing equity and supporting underserved communities.

My first entry is a copy of comments I submitted to the Biden-Harris Administration in response to the request for information on methods and leading practices for advancing equity and support for underserved communities through government. The deadline for comments is July 6, 2021. There will likely be many more opportunities to participate. If you have time to chime in before the deadline. Go here.

As background for readers less familiar with the Executive Order on Advancing Racial Equity and Supporting Underserved Communities Through the Federal Government the following are the list of areas for which the government was seeking input:

SubmittedComments

I am responding with a set of cross-cutting comments that are applicable to all sections. I have responded to many of the bulleted questions in most areas except area 3. Procurement and contracting.

I am an independent consultant specializing in social determinants of health (SDOH), health policy and health IT. I am also an OMB/OIRA alumna seeking to help the administration wildly succeed with the goals of E.O. 13985 (EO)! My consulting and career have always focused on the intersection of policy and business or program strategy. Since February of 2018, I have been tracking trends and publishing a newsletter on SDOH that closely relates to advancing racial equity and supporting underserved communities. Since the first shut down of the pandemic I have concentrated on the three drivers of worsening disparities – the pandemic, the economy and the demand for racial reckoning.

General comments that are relevant to all 5 areas

Having agencies assess issues and solutions solely on a programmatic basis will be duplicative in identifying problems and will likely miss the mark with solutions.  We need to look across all programs and engage communities to provide cross-cutting input that also helps with prioritization of changes and investments.

There are fundamental baseline data questions regarding equity assessments and gaps in our understanding of who is or is not being served. COVID-19 helped us understand it is not just access, but awareness, trust, understanding, and outreach through appropriate information channels.

There are areas that need some high-level blocking and tackling. The latest Census data and how it was influenced under the prior administration raises some fundamental trust concerns.  There are many equity and disparity indices, but they usually rely on census data. The Executive Order assigns this work to the working group on equitable data, yet at the same time asks OMB and agencies to move ahead with the assessments that will likely rely on inadequate or potentially misleading data.

Use of recognized indices to address the multifaceted aspects of underserved communities will be important, but there needs to be an agreed upon approach, perhaps with a rapid facilitated discussion among the creators and users of the indices.

Here is an initial list to consider:

Agencies and programs will need help prioritizing assessments and improvement efforts. Helping to define what has the greatest urgency should be informed by public input. Once top priority, near-term program changes are identified, additional public engagement will be needed. For example, most health disparities including those that are life-threatening are worsened or created by SDOH. However, life threatening health disparities such as sickle cell, maternal mortality during birth and premature infant deaths of minorities and people of color all warrant immediate attention.

Subsequently, or in parallel, looking across SDOH to determine those with the greatest impacts should be an interagency undertaking that also seeks to develop combined racial equity and community improvement solutions. Inadequate income, housing, transportation and food are consistently recognized as having adverse impacts on health, health access and risk of disease for most chronic illnesses. Social isolation, safety and employment should perhaps also be included in the initial cross-cutting focus.

Solutions should not be designed for advancing single program outcomes. We need to understand and develop metrics that look at the amplifying nature of these investments across programs. I am a skeptic when it comes to narrowly targeted SDOH investments because they are not accounting for the greater upstream community needs or the quality of life including living and financial stability that will yield greater outcomes and improvement beyond fewer missed appointments or fewer ER visits. If more disadvantaged individuals and communities have these supports it would likely have a positive impact on general health and wellbeing and the incidence of chronic illness, particularly if it is not limited to high utilizing or high severity patients.

An example of how the combined Federal agencies might think of their investments and incentives for other stakeholder community investment can be found in “Investing in Community Health” A toolkit for Hospitals. The toolkit distinguishes investment from spending, emphasizes leveraging investments with other community partners and considers the array of assets that hospitals bring – land, financial resources, relationships, expertise, etc. Federal agencies have a similar array of levers that should also help facilitate multistakeholder investments.  

All Federal programs designed to address basic needs of underserved individuals and communities should immediately determine the percent of the target population that doesn’t engage or doesn’t receive funding and why. All analyses should also adjust for inflation. For example, TANF funding has been held constant for 25 years.

Programs that are either jointly funded by Federal & state government or have funding determined by state economic conditions and state policies can have negative impacts on disparities when minimally funded or designed with more restrictive eligibility.  These programs disproportionately affect minorities given the higher percent of minorities in poverty. The Administration’s proposal on schools with inadequate funding recognizes this challenge. The Federal government’s efforts should look across all state administered programs including HHS, USDA, ED, BIA, FEMA, HUD, USDT(IRS), Labor, and SSA. Specifically evaluating the incentive structures and how to reward states that are addressing inequities and ultimately limit funding for states who do not. Also consider directly funding the services organizations that are underfunded (excluding the portion of funds that would help with state administration). Use disparity metrics across beneficiaries such as, payments per recipient, percentage of underserved community recipients compared to their total population percentage, and mapping indices to see how the most underserved communities fare in these programs.

Equally important from an assessment standpoint is the intersection of the many variables affecting quality of life and health – physical and mental. Many factors amplify other factors and there is mixed understanding of the individual verses combined contribution. A good article highlighting the intersection of policing and education was in a recent Stanford Law article

We are at a critical and unique juncture for our country with respect to advancing racial equity and we would do ourselves a disservice if we do not base this work on data that reflect the truth of the current inequities.

Area 1 Focuses on assessments and strategies for holistic and program or policy specific assessments.

As mentioned above, not thinking holistically or in a cross-cutting manner about what affects many, if not all, Federal programs will limit the value of these efforts. Promising methods and strategies for advancing equity on urgent or immediate agency priorities should be informed by public input and quick analyses of intersecting programs and policies that need to be tackled for true and sustained change.

Monitoring the trends in addressing social determinants of health has convinced me that we need to shift investments from the acute clinical care system to community based social services, infrastructure and prevention. We know a lot about disparities and the underlying drivers. The most prominent determinants first erode an individual or families’ abilities to meet basic living needs such that they cannot engage in activities that would advance or maintain their wellbeing. This understanding was first introduced by Abraham Maslow in 1943. It established the underpinnings of SDOH.

Promising methods and strategies to address internal agency practices and policies need to look to diversity, equity and inclusion in all human resources strategies. Although the Federal government has historically been more diverse in its overall hiring practices, that is not true for more senior positions or management and executive hiring. A critical part of fostering interest in government service is having a workforce that reflects the diversity of the potential candidate pool at all levels of government. The Biden-Harris Administration is doing a great job from a political appointee vantage point, but individual agencies vary significantly and those overseeing industries that are traditionally white male dominated have the farthest to go. There is also strong distrust of these institutions and countless examples of institutional and interpersonal discrimination.

Promising practices:

There should be urgency in identifying practices that need immediate change. There are many institutions that are working toward the same goals and their approaches may offer some models. Two recent examples are:  AMA’s 3-year plan to advance racial justice and equity, and UC San Diego’s strategic plan for dismantling structural racism. Someone could be tasked to do an environmental scan of these efforts with the goal of developing best practices.

Promising equity assessment tools for law enforcement: Perhaps not assessment tools, but known & perceived areas of disparities are arrests, sentencing – particularly when looking at white collar crimes verses other felonies in which people of color and economically disadvantaged are disproportionately represented. Sentencing for drug crimes, particularly now that addiction is recognized as a disease, should be re-examined. Similarly, implementation of the three strikes rule at the Federal and state levels should determine if life sentences or prolonged sentencing has been disproportionately imposed on people of color. Finally, more post-release support and resources for individuals who have served their jail time to help them successfully rejoin society. A place to start could be with a new term other than ex-convict!

Many states and jurisdictions are reformulating policy considerations by positioning racism as a public health issue. I applaud this approach if we are committed to substantial increased investment in public health at all levels of government with mandatory requirements and outcome measurements for racial equity in every state. The previously referenced law review article makes the strong case for why policing in schools needs a public health lens.

Collecting data to build evidence in appropriate and protected ways.

There are many challenges to collecting accurate race, ethnicity, gender and gender identity, sexual preference and income and asset data due to the often-voluntary nature of the information and the historic and persistent use of such information to discriminate. Using geographically based indices that are current, accurate and granular can help with identifying and better understanding communities, although few indices are accurate to the zip code level. If county and city level analyses can identify critical gaps in data, working with local advocates and representatives of the underserved population could determine what approaches would be trusted through which information channels. The standardization effort for SDOH data is important to help facilitate referrals and engagement with needed resources. Unfortunately, the same data could be used for discriminatory purposes if not adequately protected.

Our experience with HIPAA has demonstrated that privacy and security protections were purposefully misinterpreted to make it harder for individuals to access appropriate care. I have witnessed a provider for an economically disadvantaged, disabled individual state that they do not share electronic data with patients (contrary to HIPAA requirements) making it difficult for the individual to get a second opinion and potentially change their treating physician.

Build capacity for teams conducting the work.

There are many ways to build capacity and foster multi-program assessments some are likely more costly than others. Consider creating swat team-like approaches with interagency teams that are established with detailees as needed for the duration of the effort.  Due to erosion of Federal staff during the prior administration this may not be feasible. Perhaps bring in agency alumni and retirees interested in supporting the work as temporary independent contractors.  Alternatively, leverage existing contractors with the necessary expertise to support, but not run the effort. An interagency council could help establish criteria for prioritization of agencies’ programs and policies to be assessed. Prioritization should include public input from representatives of disadvantaged individuals and communities. Establishing plans to undertake the full scope of the EO in stages will help make the work more manageable and foster transparency for the public to minimize criticism for not achieving the full scope of the EO right away.

Potentially there are cross-cutting analytics and tasks that could be done by interagency tiger teams, e.g., technology barriers, language barriers, eligibility simplification, civil rights. Similarly, there are potential natural aggregation of programs for analysis. For example, Interdependent welfare programs: welfare services– revisit historic linkages recognized in the establishment of HEW; SNAP and WIC; school lunch; head start, etc. Income programs are another interagency focus both direct income support and tax credit programs. Additional areas to consider for aggregate assessment and analysis are: employment; professional training; and research funding and support as it affects historically underrepresented individuals, institutions, companies, colleges and universities based on demographics. With agreed combined areas of focus, staffing could support work across agencies and programs.

There is likely a critical need for management and support across the Federal efforts that would help with planning, methodology and access to needed resources. DPC and OMB are positioned to help coordinate and steer the efforts, but there need to be staff dedicated from each agency that are able to monitor efforts, regularly report on progress, flag and help resolve challenges early and escalate needed solutions as quickly as possible.

Meaningfully integrating community engagement and feedback from underserved with lived experience.

As discussed in my cross-cutting comments, the communities are the same communities that are underserved and affect by all programs. There may be some natural groupings for these engagement efforts. It would likely make sense to have distinct conversations with rural, sub-urban and urban communities. It might also be useful to group states or designate regions that are systematically struggling with the same persistent issues.

To truly engage communities and individuals with lived experiences in the use of equity assessment methods is complicated, particularly when laws make the program implementation complex. Similar to my responses for area 5 of this RFI, I would start with listening sessions and then seek volunteers interested in participating in an ongoing advisory role. I also recommend providing funding or a stipend for underserved individuals participating in these roles recognizing their circumstances.

Work with organizations that communities and individuals already have established trusted relationships. They should not be the voice for the communities regarding their overall needs and experiences, but the link to help engage the communities and individuals.

Maintaining transparency throughout the process will also help establish sustained trust.  The RFI was a good place to start, but additional communication channels are needed and listening sessions along the way as assessments are conducted and proposals developed will avoid surprises. Establishing consumer advisory councils for this undertaking that will have an ongoing role with program improvement could also help gain and sustain trust.

Better transparency for all equity improvement efforts from the start to finish will help foster engagement. The Administration should develop a way to communicate what policy assessments and proposed changes are coming up that may impact disadvantaged individuals and underserved communities and how they can engage. Consider developing a public calendar of events and initiatives with contact information so that individuals and communities do not have to navigate across the Federal government. This may require multiple calendars that align with targeted focus areas once they are defined.

Area 2 on barrier and burden reduction

COVID19 has taught our country the widespread truth of health and living disparities that are consistent across all underserved communities and worsened by racial and ethnic disparities. The causes of the disparities are created by common barriers and burdens that impact individual’s and communities’ abilities to engage in numerous Federal programs. Many of these are noted in the introduction to this input area “Non-traditional or inflexible work hours, childcare needs, housing insecurity, limited transportation access, limited proficiency in English, disability, low literacy, income or other resource constraints, stigma in accessing public programs, and limited access to technology.” When these are present, the same individuals and communities are prohibited or inhibited from engaging. These cross-cutting barriers need to be assessed on their combined impact.  Similarly, solutions need to be considered as combined/collective solutions. For example, improved transportation, technology access and housing will position individuals and communities to more readily participate in health education, and training programs.

The following are two common examples during COVID:

Consider the children during COVID lockdown who didn’t have technology/WIFI, couldn’t get free and reduced lunch without transportation, whose parents worked in the cash economy without tax filing and were unable to receive any of the Federal/state support.

Older adults, living alone, unable to drive and unable to navigate technology faced similar challenges to those of these children and if either the children or older adults had chronic health needs these barriers and burdens were compounded.

These two examples flag another important cross-cutting challenge for analyses; the assessments need to look at the changing needs over the course of individuals’ lives, i.e., evaluate the problems and solutions for infants, children, tweens, teens, young adults, families, working adults, older adults broken down by level of independence. Similarly, these focused assessments need to take into account all of the demographics known for discriminatory practices. These are well articulated in the EO:

“…individuals who belong to underserved communities that have been denied such treatment, such as Black, Latino, and Indigenous and Native American persons, Asian Americans and Pacific Islanders and other persons of color; members of religious minorities; lesbian, gay, bisexual, transgender, and queer (LGBTQ+) persons; persons with disabilities; persons who live in rural areas; and persons otherwise adversely affected by persistent poverty or inequality.” 

The list of questions for Area 2 demonstrate a good understanding of the cumulative and overlapping burdens created by many benefits programs and the challenges of balancing programs goals and requirements and undue burden on applicants and recipients.

Continued improvement in providing a full range of access points that recognize the constraints underserved communities and individuals face is one of the keys to facilitating engagement. Appreciating the personal struggles, fears and internalized discrimination of applicants is an important start.

Using current and unbiased data to assess the gaps in target benefit populations and recipients of the benefit is important for accurate analyses and trust. It should then be followed by the identification of the reasons for such gaps which are often many that can compound the problems. An example is wait lists for the recently increased community-based services under Medicaid. This program has the complication of being state run, with unique eligibility requirements and services delivery infrastructures in each state that play a role in these wait lists. The amount of wait time can deter applicants if it is not clear if/when benefits might be available.

There is evidence that shorter wait times for home and community-based services yields reduced need for nursing home care. It is common sense that if the target population is not receiving the intended benefit, there is a problem. We have seen this in terms of home-delivered meals. It shouldn’t require in depth study to realize the people who lost their jobs and had trouble navigating to the COVID19 assistance funding due to faulty state systems were at risk for many financial and living challenges.

Asset tests and the frequency of re-establishing eligibility or recertification are known causes of churn and reduced engagement in benefit programs. An Urban SNAP study in 2014 and a more recent analysis from the Massachusetts Department of Transitional Assistance provide adequate evidence to re-examine how & when these actions are undertaken. The impact of the churn on other costs and burdens to individuals and families would tip the scales even further on redesigning eligibility determinations and when individuals are disenrolled. States were given more flexibility during COVID with regard to recertification that could perhaps offer insights into appropriate sustained changes with some added rapid analysis.

When looking to balance competing values associated with program administration this is precisely when communities and individual representatives with lived experiences need to have a voice. Privacy can be a red herring for access limitation as we’ve seen under HIPAA. We need to give individuals more of a voice and hold states and programs accountable for ensuring only those individuals with a need to know would have access to sensitive information – race, ethnicity, age, financial, health, identity, sexual preference, many of the demographic categories for which we’re seeking to address discriminatory practices. At the same time, we need to work with individuals and communities to help them understand current constraints of programs and the challenges of addressing discriminations without data that reveals the extent to which the discrimination impacts access and engagement.  Methodologies that use aggregate zip code level impoverishment metrics as proxies to examine underserved community needs can help avoid privacy issues and further interpersonal discrimination.

Agencies seeking to understand duplicative barriers and burdens that cut across programs seeking to support underserved individuals and communities should work collaboratively with their sister programs and agencies and OMB to see how single point of access, no wrong door and shared /combined application processes could be developed and improved. Technology can be part of the solution, but there needs to be recognition of the many portions of the population for which technology is another barrier. Benefits.gov is aimed at this problem, but still presents a level of complexity that can be overwhelming to individuals. Sorting by state still results in pages and pages of listings.

There are probably very few people in the US that haven’t experienced the colossal waste of time providing the same information repeatedly when – calling a service, then speaking to an agent, then finally being connected to an individual who is in a position to answer your question or address your need. Unfortunately, this happens too often in government programs. Capturing and verifying information once that is sustained during the interaction should be the goal.

Area 3 procurement/contracting

I’m largely skipping this set of questions but would ask that there be a Federal analysis of how often minority and disadvantaged contractors that are partners on large contracts receive the bare minimum of funding to meet Federal requirements. Perhaps there could be incentives for enhanced partnering and mentoring of these contractors. As an independent contractor who was periodically brought in by larger organizations needing to fill areas of expertise on IDIQs, I rarely was engaged in subsequent awards. I’m guessing this happens too often to the many diverse individuals and small contractors.

Area 4 Financial assistance

The grant amounts and the expertise required to apply for grants are both barriers to underserved community engagement. Having technical assistance for first time or relatively new applicants is a must. Creating internal and external mentor programs to provide advice and counsel from seasoned applicants could be part of the solution. This support should be funded and not just voluntary.

The level of funding for many of these community-based programs, given the breadth and importance of their impact is often inequitable. This is particularly true given the known cost savings attributed to the ultimate recipients of the funding for many social support programs.

For example, caregiving, including respite services, across the life span yields enormous savings to Federal and state health programs, yet the funding is pennies or less on the dollar of avoided healthcare and institutional costs. This is also true for senior services and home and community-based services for chronically ill and disable individuals.  These are also programs that often disproportionately affect women and minorities. The result not only being inequitable receipt of grant funding, but reduced ability to stay in the work force and maintain financial stability. The limited funding is also a reflection of the limited Federal dollars allocated to these needs and invested in community programs such as area agencies on aging whose funding continues to shrink as the older adult population grows!

Outreach and stakeholder engagement to Identify opportunities to make grants and other financial assistance more accessible.

As stated at the outset, these stakeholders are the same stakeholders for many agencies’ programs and engagement initiatives should take this into account, along with their limited resources and availability. Representatives across Federal agencies should work with community organizers that help support disadvantaged communities and look for ways to create advisory councils with working groups that are representative of the range of communities across regions. Their role would be to develop methods for increasing awareness, participation and streamlined grant mechanisms. Ideally there could also be ways to aggregate adjacent and synergistic opportunities across agencies & programs that would make the investment in the application and sustained reporting and compliance efforts of the grant requirements more attractive.

Area 5

Engaging Stakeholders and communities

True engagement will take time and needs to embrace the intersecting and cross-cutting barriers discussed at the start of my comments. When an agency has responsibility for many intersecting programs it should start with listening sessions and follow with likely state or regional needs assessments. This should be carried out with focus on the changing needs across the life span and the multiplying effects of programs on specific stakeholders and communities.

The barriers or factors that challenge underserved communities’ interactions with Federal agencies and programs are almost overwhelming. Here are some that percolate to the top:

Many of the above barriers are not readily changed particularly when our country is so politically divided. However, helping communities and individuals understand how to engage, where change is possible and demonstrating how their voices can make near term differences would go a long way toward increasing interactions with underserved communities.

Accessibility of rulemaking and policy development should examine individuals with barriers and the extent to which those barriers are cross-cutting for all programs. This should be an interagency undertaking looking at improved and alternate ways to engage. All agencies should do a plain language review to see the extent to which their content is written in a manner that excludes many. Is it above 8^th grade reading levels? Has there ever been a plain language audit, particularly for programs that affect disadvantaged individuals and communities? Similarly, Agencies should look at the extent to which their translation services or those required by their regulations are being used. Does it reflect the level of non-English speaking populations? How are the agencies and programs accommodations for the disabled community working both online and in-person?

Visiting DC should not give individuals or organizations advantages or privilege. The pandemic has shown us that many activities can and should be accessible remotely and these practices should be sustained, even when travel and in-person meetings become the norm. Meetings and interactions that happen over longer periods of time that benefit from face-to-face interactions should explore regional and satellite options for people who cannot readily travel. Proximity or access to DC cannot be the only option, some local mechanisms for people who have technology barriers need to be available.

To what extent are technology access alternatives provided or assistance with technology use?

The digital divide has made disparities worse for many people and until access to technology and broadband is affordable and easily used, more traditional means of outreach and communication need to be maintained and awareness campaigns need to help let affected communities and individuals know there are opportunities for input regarding needed changes.

Social media can be a mixed blessing but presents communication channels that could reach underserved populations with help from organizations that already engage with these platforms. Grass roots advocacy organizations may be in a position to help establish notification channels. The challenge with all advocacy organizations is that they also have their own requirements and goals driven by sustainability and growth that do not always align with the people they are representing, particularly if they offer revenue generating services that will be positively or negatively impacted by potential policy changes. A simple health example would be a community services non-profit that offers adult day-care providing policy input about increasing resources for in-home services support that could compete with their service. It is not a foregone conclusion, but it warrants enabling direct means of communication and input from the individuals affected by the proposals.

To really engage people there may need to be longer time frames for input/comment, advance notice through community channels that relevant rules or policies will be available for input. Regulatory changes are often complex and require some education on the current program requirements to help people provide more meaningful input. Engaging communities on how to present information and policy options in accessible formats could make the difference between superficial verses substantive engagement.