As pharmaceutical manufacturers race to develop a COVID-19 vaccine, local, state, and federal policymakers will need to make critical decisions regarding who has priority access. Some states have protocols that rank individuals with a disability or medical condition at a lower level of priority to receive medical treatment, including vaccines, during public health emergencies. Some, but not all, of these priority protocols have been addressed by the U.S. Department of Health and Human Services’ Office of Civil Rights as the result of lawsuits. The U.S. Centers for Disease Control and Prevention utilizes tiers to determine priority access to vaccines during a pandemic, which are dependent on numerous factors, including the severity of a pandemic and the availability of the vaccines; however, these tiers do not specifically include people with disabilities.

The Pennsylvania and New Jersey Health and Disabilities Consortium, a coalition of large providers, wants to ensure that those with intellectual and developmental disabilities and the health-care professionals who care for them have priority access when vaccines are available.

The COVID-19 pandemic revealed two serious gaps in the systems of care for people with intellectual and developmental disabilities. First, organizations providing critical services to this vulnerable population are not defined in federal legislation in the way that organizations such as skilled nursing facilities are, and consequently they were left out of funding streams that became available through the CARES Act and other opportunities. Second, the population served by these providers is not well-defined or well understood by government agencies and legislators.

Part of the problem is that no nationally recognized definition of intellectual disability exists. Federal sources of health data, including the U.S. Census, used to drive public health decisions do not specifically break out data or definitions for people with intellectual disabilities.

Of the 56 million people in the U.S. with a disability, approximately 12 million have an intellectual or developmental disability, and about nine million receive services through government systems. Under normal circumstances, this population experiences significant health disparities and confronts challenges accessing health care. Over 30% of persons with intellectual and developmental disabilities have co-occurring medical, mental, or behavioral health conditions.

Those with underlying health conditions are at increased risk of adverse health effects or death related to COVID-19, including diabetes, obesity, and heart disease. While the number of people with intellectual and developmental disabilities requiring complex care is relatively small compared with the overall population, this group of people are high utilizers of the ER and inpatient services, and uses approximately one-third of Medicaid dollars.

Providers of comprehensive services for this vulnerable population provide 24/7 care, which takes into account most of the services a person with complex conditions would need throughout the lifespan, adapting services to needs which may periodically change. Throughout the pandemic, these “life cycle care management” providers have not only continued vital round-the-clock services, but also have had to reorganize staffing models when individuals who test positive for COVID-19 or who have been exposed must quarantine. They also purchased vast amounts of PPE and medical supplies, which were not budgeted for.

Life cycle care management organizations should be defined as a separate sector by the secretary of Health and Human Services. This will allow for their value, similar to that of hospitals or nursing homes, to be recognized in order for them to be easily identified for assistance.

These providers employ tens of thousands of direct care, nursing, and medical professionals in Pennsylvania alone, who are essential workers. These heroic employees have put their own health at risk to care for a vulnerable population in great need.

Granting individuals with intellectual disabilities and the essential employees who serve them priority access to safe and tested vaccines will protect these individuals, their families, and the community at large, and prevent unnecessary hospitalizations, emotional trauma, and loss of life.

Tine Hansen-Turton is the president and CEO of Woods and a member of The Inquirer’s Health Advisory Board Panel. Liz Hayden is the secretary/treasurer of the Pennsylvania and New Jersey Health and Disabilities Consortium, whose members are Bancroft, Chimes International, Devereux, Elwyn, Legacy Treatment Services, Kencrest, Melmark, Merakey, RHD, and Woods.