Mark Mather
Associate Vice President, U.S. Programs
Progress in narrowing the gap varied considerably by type of disability. Disparity in age at death decreased by just a few months between adults with and without an intellectual disability; by 1.4 years between adults with and without Down syndrome; and by 2.1 years between adults with and without cerebral palsy.
The disparity remains sizeable, however: Adults with intellectual disabilities lived 12 fewer years than other adults; with Down syndrome, 18 fewer years; and with cerebral palsy, 23 fewer years.
These findings suggest that gaps in average age at death could be further reduced, or perhaps even eliminated, Landes argues. “We need to better understand how much of the remaining gap can be eliminated and whether the ability to do so varies by disability type.”
Adults With IDD Face Elevated Risk of Death From COVID-19
Adults with IDD, especially those living in residential care settings, were more likely to die from COVID-19 than the general population. Among adults diagnosed with COVID-19 in 2020, those with IDD were 2.6 times more likely to die than those without IDD, based on data from 11 U.S. states and the District of Columbia.2 COVID-19 death rates were consistently higher for people with IDD living in congregate residential settings (such as group homes) and receiving 24/7 nursing services.3
Like other adults, people with IDD were more likely to die from COVID-19 if they were older or had underlying conditions such as heart disease, cancer, or chronic kidney disease.4 Landes highlights several other reasons adults with IDD may be more vulnerable to death from COVID-19, including a higher prevalence of pre-existing conditions (especially respiratory diseases); the health care inequities they face; and a higher likelihood of living in group settings or needing in-person personal or medical care that cannot be socially distanced.
People With IDD Live Longer in Certain U.S. Regions
Adults with IDD tend to live longer in Midwestern and Northeastern states, while their average ages at death tend to be lower in the South and Southwest (see Figure 2).
Figure 2: Adults With Intellectual and Developmental Disabilities Live Longer in Parts of the Midwest and Northeast
Source: 2017 U.S. Multiple Cause-of-Death Mortality Files, National Vital Statistics System.
The age-at-death gap between adults with IDD and those without ranges from 25 years in Nevada and 24 years in Arizona to 15 years or less in Maine and the District of Columbia (see Figure 3). Eleven of the 15 states with the greatest age-at-death disparity (20 years or more) were western or southern states. In contrast, 10 of the 15 states with the smallest disparity (18 years or less) were in the Northeast or Midwest.
Figure 3: The Age-at-Death Gap Varies Widely by State Between Adults With and Without Intellectual and Developmental Disabilities
Note: States are sorted by size of age-at-death gap, from largest to smallest.
Source: 2017 U.S. Multiple Cause-of-Death Mortality Files, National Vital Statistics System.
The wide differences among states suggest that adults with IDD may face uneven access to adequate health care and social support services depending on where they live, Landes states. Differences could also be driven by the varying prevalence of co-occurring conditions, such as diabetes and heart conditions, among people with IDD living in different parts of the country.
Racial and Ethnic Minorities With IDD Face a Double Jeopardy
A wide gap exists in average age at death between non-Hispanic white adults with IDD and their peers in other racial/ethnic groups (see Figure 4).5
Non-Hispanic white adults with IDD live nine years longer, on average, than Black and American Indian adults with IDD; 11 years longer than Asian or Pacific Islander adults with IDD; and 12 years longer than Hispanic/Latino adults with IDD. These racial/ethnic inequities are most pronounced among adults with cerebral palsy.
Figure 4: White Adults With Intellectual and Developmental Disabilities Live Longer Than Their Peers in Other Racial/Ethnic Groups
Note: * Non-Hispanic.
Source: 2017 U.S. Multiple Cause-of-Death Mortality Files, National Vital Statistics System.
“It is imperative that efforts aimed at improving health outcomes among adults with intellectual and developmental disability take into account that racial/ethnic minorities with intellectual disability, Down syndrome, and cerebral palsy are at greater risk of premature death than their white counterparts—a double-jeopardy that is most severe among adults with cerebral palsy,” Landes and colleagues write.
Enabling Adults With IDD to Lead Longer Lives
The wide variation in average age-at-death by state and the shrinking gap between adults with and without IDD suggest room for improvement exists, Landes argues.
“Adults with IDD may die at younger ages, but we should not accept this trend as a fait accompli,” he says. “Evidence of rising age at death indicates that people with IDD could live longer with improvements in the quality of and access to health care. It should not be assumed that people with these lifelong disabilities are unhealthy.”
Emphasizing that disability does not equal poor health, Landes points to a variety of policy and program changes that could improve longevity for adults with IDD:
- Protect adults with IDD who live in group settings as we do nursing home residents. Adults with IDD should receive similar priority for vaccines, boosters, tests, and high-quality personal protective equipment because they face some of the same risks as those in nursing homes, Landes explains. Caregivers for people with IDD should receive the same respect and resources and have similar vaccination requirements as nursing home and hospital staff.
- Increase federal and state pay scales for caregivers for adults with IDD. Low pay has contributed to a staffing crisis for disability care, a trend exacerbated by the pandemic. These direct service professionals (DSPs) are often paid at lower rates than many employees at fast food restaurants, just $7 or $8 per hour in some places, reports Landes. Many are abandoning their positions to work in better paying jobs that do not require face-to-face interaction, which they perceive as safer, he says. Some group homes have shut down or reduced services due to staffing shortages. In turn, some residents with IDD have had to move into relatives’ homes. In worst-case scenarios, individuals with IDD who have lived in group homes in community settings may be sent to nursing homes, he says. In some cases, these changes have prompted family members to leave the workforce to become full-time caretakers. While addressing this staffing crisis is a multi-faceted issue, Landes emphasizes that “providing DSP’s a living wage is imperative.”
- Better prepare physicians to care for people with IDD. Only a handful of U.S. medical schools provide training on disability as part of the curriculum, according to Landes. “Most physicians have very little exposure to IDD, and they do not understand living situations for people with the disabilities,” he says. During the early months of the pandemic, physicians discharged many COVID-19 positive adults with IDD to group homes, resulting in increased spread of the virus in congregate settings. In addition, medical providers often fail to provide patients with IDD with accessible, plain-language self-care instructions (for COVID-19 or other illnesses).
- Revise policies for reporting on death certificates to help identify preventable deaths. As intellectual and developmental disabilities are disabilities, not diseases or illnesses, they should not be reported as the underlying cause of death on a death certificate. Instead, the disability should be listed as a condition that was present at the time of death.6Reporting disability as the underlying cause of death obscures high rates of preventable choking deaths related to pneumonia from aspirating food or vomit in residential care settings, a study by Landes and colleagues shows.7 U.S. public health officials rely on death certificates as a primary source of data for policymaking and planning; ensuring the accuracy of cause-of-death reporting for people with IDD is key to reducing premature deaths and improving the longevity of people with these disabilities.
For more detailed data on age at death among people with intellectual and developmental disabilities, visit the IDD Age at Death Data Tracker at Syracuse University.
References
[1] Scott D. Landes et al., “Evidence of Continued Reduction in the Age-at-Death Disparity Between Adults With and Without Intellectual and/or Developmental Disabilities,” Journal of Applied Research in Intellectual Disabilities 34, no. 3 (2021): 916-20.
[2] Scott D. Landes, Margaret A. Turk, and David A. Ervin, “COVID-19 Case-Fatality Disparities Among People With Intellectual and Developmental Disabilities: Evidence From 12 U.S. Jurisdictions,” Disability and Health Journal 14, no. 4 (2021): 101116.
[3] Scott D. Landes et al., “Covid-19 Outcomes Among People With Intellectual and Developmental Disability Living in Residential Group Homes in New York State,” Disability and Health Journal 13, no. 4 (2020): 1-5; and Scott D. Landes, Margaret A. Turk, and Ashlyn W. W. A. Wong, “Covid-19 Outcomes Among People With Intellectual and Developmental Disability in California: The Importance of Type of Residence and Skilled Nursing Care Needs,” Disability and Health Journal 14, no. 2 (2021): 1-5.
[4] Scott D. Landes et al., “Risk Factors Associated With Covid-19 Outcomes Among People With Intellectual and Developmental Disabilities Receiving Residential Services,” JAMA Network Open 4, no. 6 (2021): e2112862-e62.
[5] Scott D. Landes et al., “Racial-Ethnic Inequities in Age at Death Among Adults With/Without Intellectual and Developmental Disability in the United States,” Preventive Medicine 156 (2022): 106985.
[6] Scott D. Landes, Margaret A. Turk, and Emily Lauer, “Recommendations for Accurately Reporting Intellectual and Developmental Disabilities on Death Certificates,” American Journal of Preventive Medicine 59, no. 6 (2020): 892-95.
[7] Scott D. Landes, James Dalton Stevens, and Margaret A. Turk, “Obscuring Effect of Coding Developmental Disability as the Underlying Cause of Death on Mortality Trends for Adults With Developmental Disability: A Cross-Sectional Study Using U.S. Mortality Data From 2012 to 2016,” BMJ 9, no. 2 (2019): e026614.
