Supportive Community-Based Programs

Supportive, community-based grief and bereavement programs are a priority in health and well-being.

1. The Agency for Healthcare Research and Quality should partner with the Department of Education to optimize telehealth availability for grieving children within school settings, which are increasingly important centers of health care for school-age children.

On any given school day, nearly fifty million children attend public school in the United States, and close to five million children attend private school. As such, schools are a logical touch point for the delivery of health and social services, particularly for children who face substantial hardship and adversity and lack frequent or consistent care from the conventional healthcare sector. Investments in telehealth technology, which can expand services and provide subspecialty care within school settings, can help remove barriers to needed care. Telehealth services can also reduce marginalization and maladaptive coping for even the most hard-to-reach children. In addition, as the United States moves toward achieving clinical and cost parity between in-person care and telehealth, ensuring that bereavement and associated support services are readily accessible and timely enables teachers to focus on pedagogy, optimizes taxpayer investments, and allows children and families to access care within their communities. For these reasons, the Agency for Healthcare Research and Quality should develop school-based telehealth resources to attend to the physical and behavioral needs of grieving students.

Community Programs (1)

2. The Department of Education should work with states and school districts to develop bereavement policies that support grieving and bereaved students.

According to the Department of Education, more than seventy-three million students attended schools in 2020. This figure includes students at every level, from those in kindergarten to those in postsecondary institutions (e.g., colleges and universities). As concurrent mortality epidemics sweep the nation, students are not immune from the toll that death has taken on families. By some estimates, 40 percent of university students have experienced the death of a loved one in the previous two years; however, while the number of bereavement-leave policies aimed at supporting students in school settings has increased in the last few years, they are the exception, not the rule. By Evermore’s estimates, approximately four of five parentally bereaved children are of primary and secondary school age.

One notable difference between primary and secondary institutions and colleges and universities is the way they identify the vulnerable students. In primary and secondary settings, schools could offer parents and guardians the ability to report a child’s bereavement status during the annual student registration process, much as they can report other health concerns (e.g., allergies), guardians’ occupational status (e.g., parents who are in the military), and academic challenges (e.g., dyslexia). When reporting of bereavement status is available, additional support and accommodations can be offered. Research indicates that school-age bereaved children, including those who have lost a maternal grandmother, are more vulnerable to academic failure than their nonbereaved counterparts. Depending on who has died in the household, other insecurities may ensue, resulting in food, housing, and/or healthcare insecurity. These insecurities, along with the demands of academic rigor and competition, can accumulate and impair a student’s ability to succeed. Currently, there is no mechanism through which schools can identify grieving children and refer them to school- or community-based resources.

Beyond the ability to identify and report bereavement status, creating a policy that honors a student’s grieving and bereavement may include several elements, such as

  • specifying the number of days a student will be excused from class;
  • determining whether the absences may be taken consecutively or otherwise;
  • determining whether additional excused absences are required for out-of-state travel;
  • outlining the requirements for a death certificate, obituary, or other proof of bereavement;
  • offering access to grief support during the school day; and
  • offering training opportunities to faculty and staff so they can better understand and support grieving students (e.g., suggesting the revision or replacement of assignments that require family trees or sensitivities to Mother’s or Father’s Day).

The opportunity to participate in school or community-based programs should complement any existing student bereavement leave policy, particularly for students who may not have access to these services otherwise. Preliminary evidence demonstrates that both grief and trauma interventions delivered in school settings have had some success.

Because schools increasingly serve as primary points of care for children, the Department of Education should work with states and school districts to develop bereavement policies that allow students to grieve and mourn their losses.

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3. The Department of Health and Human Services and the Department of Justice should commit resources to highly affected jurisdictions, ensuring that bereavement care for historically underserved youth is a tenet of community-based programs aimed at reducing gang affiliation, criminal activities, and imprisonment.

A study of incarcerated teens between the ages of sixteen and eighteen in California found that 77 percent of the teenagers reported experiencing a meaningful or impactful death prior to incarceration and that 68.8 percent had experienced at least two such deaths. Of these teenagers, more than half had lost a parent or other primary caregiver. Several reported a number of serious consequences as a result of the death, including worsening school or work performance (49.4 percent), joining or becoming more involved with a gang (33.8 percent), and undergoing a change in caregivers (13 percent). A longitudinal study in Illinois found that 88.3 percent of detained adolescents had experienced the death of at least one person close to them, with 21.3 percent experiencing the death of a caregiver, 13.9 percent experiencing the death of a sibling, and 67.6 percent experiencing the death of a close friend. Two-thirds of the teenagers had experienced a loss resulting from violence, and two-thirds had experienced more than one loss. The subjects reported numerous adverse consequences following these deaths, including moving to a different home, separation from siblings, joining a gang, and declining grades. Detained teenagers who had experienced a loss were at least three times as likely to have a mood disorder (e.g., a major depressive episode, dysthymia, a manic episode, and a hypomanic episode) compared to those who had not experienced a loss.

Bereavement may be an overlooked and underaddressed correlate of incarceration among historically underserved children and adolescents. Incarceration, in turn, is associated with poor physical, social, and economic health throughout the youth’s life span. Preliminary research has found that adolescent bereavement is a precipitating risk factor for juvenile delinquency and subsequent adjudication and incarceration. Current practices in the juvenile incarceration system do not facilitate the detection of and care for bereavement. Thus grieving youth remain at risk of incarceration, threatening their physical and mental health as well as their adaptive developmental progression and their ability to live successful and productive lives. Congress should commit specific resources to providing grieving adolescents with a pathway to opportunity, health, and long-term stability.

4. The Department of Health and the Department of Justice should pilot new, evidence-based programs that nurture bereaved children, people, and families.

Evidence indicates that Black and Brown people experience more losses earlier in life than White people do. Poverty and crime disproportionately affect historically marginalized populations, yet federal and philanthropic investments have yet to include bereavement programs and services in efforts to reduce inequities in income and health care. Communities experience these persistent hardships, many of which are social or public health crises, with little support and with outdated approaches to care.

Because large-scale investments in grief and bereavement programming have languished for decades—or, arguably, have been absent—community leaders have been filling the gap. Thousands of local bereavement micro-organizations provide a frontline response to grieving children and families. This homegrown, organic, yet fractured infrastructure of community providers has never received the federal investment that would allow it to create a coordinated, well-developed network of support for families dealing with the aftermath of a death.

Investments that retain and build local centers allow communities to adhere to their cultural norms and attitudes while remaining agile during man-made or natural crises. In addition, local providers offer “upstream” healthcare delivery, thereby helping prevent the multitude of poor health and behavioral outcomes associated with grief and bereavement.

To spark innovation and strengthen existing evidence-based programming for grieving children and adolescents, the Department of Health and the Department of Justice should pilot new services, tools, and supports tailored to specific groups and their needs. Projects should explore the unique geographical, spiritual, and cultural factors affecting the grief and bereavement experience and the economic stressors endured by families and communities.

5. The Department of Education should add an orphanhood-specific question to the Free Application for Federal Student Aid (FAFSA) and the definition should be congruent with those used by domestic and international policy institutes, organizations, and government agencies.

Over 13 million students rely on the FAFSA form to determine their eligibility for federal, state, and institutional aid. These applications amount to over $120 billion in aid being distributed to students in need via grants, low-interest loans, and work-study programs. Indeed, FAFSA has increased access to higher education, with an estimated 70 percent of undergraduates filing a FAFSA application, yet many barriers continue to exist for those from traditionally underprivileged and marginalized backgrounds.

To best support parentally bereaved and orphaned children, the Department of Education must first collect specific data on this phenomenon to understand the unique needs and adversities these students face. At present, there is no national collection system that aggregates annual data on bereavement, such as demographics (e.g., trends by race and geography), cause of death, and family kinship. Thus, bereavement as a public health and social concern remains invisible, despite yielding the potential for significant medical, behavioral, and economic hardship among college and university students.

As stated in Evermore’s economic security agenda, for nearly a century, Congress recognized the unique needs of children, particularly those who experienced the death of a parent. Since the elimination of the post-secondary education benefit, in 1982, researchers have found that college enrollment dropped by an estimated 18 percent among bereaved and orphaned children. Congress should reinstate a federal student benefit program for all bereaved and orphaned children.

Read Evermore's letter to the Department of Education...

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