March 15, 2021
Dear Governor Ducey:
We, the members of the Developmental Disability Advisory Committee (“DDAC”), want to first acknowledge your leadership during the COVID-19 pandemic and the extremely difficult “new normal” that it has ushered in. We agree that prioritizing groups based on risk is incredibly important and that the most vulnerable among us should receive the vaccine as soon as possible. Given the premise that the most vulnerable must be prioritized, and the disproportionately adverse health outcomes experienced among individuals with intellectual and developmental disabilities (“I/DD”), we urge you to adopt a policy that allows people with intellectual and developmental disabilities or their primary caregivers, to begin receiving the vaccine immediately due to the increased risk of hospitalization and death they face from COVID-19.
This letter provides: 1) a brief outline of who qualifies as a member of the Division of Developmental Disabilities (“DDD”) and services provided by the Division; 2) scientific data to demonstrate that DDD Members are significantly more likely to face worse outcomes if they are infected with COVID-19 than their non-disabled peers; 3) an explanation of how prioritizing DDD members for vaccination will save taxpayer dollars; 4) a simple solution to prioritize DDD Members using the existing state vaccination portal; and 5) explains the role the DDAC has in advising the state on these matters.
Qualifying for DDD in Arizona
To qualify as a member of the Division of Developmental Disabilities (“DDD”), a person must be diagnosed with at least one of the following medical disabilities: cerebral palsy, epilepsy, autism spectrum disorder, or intellectual disabilities. In addition to having a qualifying diagnosis, a member must show “significant limitations in daily life skills due to their qualifying diagnosis in three [defined areas].” What qualifies as a significant limitation is strictly defined, but includes obstacles like an inability to communicate, requiring significant help with bathing, and needing daily supervision for their safety. These limitations in daily life skills make it more likely that DDD Members will contract COVID-19, despite everyone’s best efforts to prevent infection. People who are vaccinated and become infected with COVID have less virus in their nose and throat samples. For people with developmental disabilities who often have a harder time masking and social distancing, and who have a greater need for social contact for their well-being, vaccination is a valuable public health strategy to both meet the needs of those individuals and families while reducing the risk of transmissions more broadly.
Due to the significant risk COVID-19 poses to DDD members, they should be prioritized for vaccination pursuant to the CDC’s guidance. DDD members are an at-risk group for several reasons. The qualifying medical condition for DDD members by itself means members are more likely to suffer adverse outcomes if infected with COVID-19. Mortality rates among people with disabilities are significantly higher than than their typically developing peers. Additionally, the vast majority of DDD Members have multiple medical conditions that render them more susceptible to hospitalization and death if they are infected. Finally, vaccinating the approximately 45,000 DDD members or their primary caretakers is a cost-saving measure. The healthcare of DDD Members is paid for by the state. Because DDD Members are more likely to be hospitalized if they contract COVID-19, prioritizing them for COVID-19 vaccinations is also responsible stewardship of taxpayer dollars.
COVID-19 Disproportionately Affects DDD Members
It is a settled scientific fact that COVID-19 poses a disproportionate burden on people with intellectual and developmental disabilities. To begin with, people with disabilities may be more likely to be infected with COVID-19 because many require care from people outside the home, use mass transit, or work jobs that cannot be done virtually. We know that children (0-17 years old) with intellectual and developmental disabilities are significantly more likely to be diagnosed with COVID-19 than children without such disabilities.
More concerning, however, is the fact that people with intellectual and developmental disabilities are also much more likely to suffer adverse outcomes than people without disabilities. Evidence began emerging as early as June 2020 that people with intellectual and developmental disabilities were two to three times more likely to die from COVID-19 than other people. This early finding has been repeatedly confirmed by independent research. Given the mounting evidence, in December 2020, the CDC recommended prioritizing vaccination for people with Down’s Syndrome, who are ten times more likely to die from COVID-19. This is a step in the right direction, but it leaves many others in the disabled community unprotected.
Some of the increased risk people with intellectual and developmental disabilities face may be attributable to the fact that they are much more likely to have multiple pre-existing health conditions. According to a recently released study from Johns Hopkins, “across all age groups, COVID-19 patients with intellectual disabilities and related conditions (e.g., Down syndrome and other chromosomal anomalies; mild, moderate, severe and profound intellectual disabilities; congenital malformations, such as certain disorders that cause microcephaly) had the third highest risk of COVID-19 death.” The increased risk of death is most marked in children with intellectual and developmental disabilities who are ten times more likely to die from COVID-19 than children without these disabilities. The increased likelihood of death for children with I/DD is the reason that it is extremely important that paid and unpaid primary caretakers of a DDD Member under the age of 18 is also prioritized to get the vaccine until the vaccines are authorized for use in children.
While new information about COVID-19 continues to emerge, the data showing that intellectual and developmental disabilities alone make people more likely to suffer severe adverse health effects from COVID-19 continues to build. In a recently released article, Dr. Peter Hotez, a vaccine expert on the CDC’s Advisory Committee on Immunization Practices (“ACIP”) wrote: “There is growing consensus that individuals with I/DDs are particularly susceptible to COVID-19, demonstrating more severe illness, greater risk of hospitalization, and almost twice the case fatality rates for individuals aged 18-74.” The article urges health officials to ensure that individuals with I/DD “expressly be integrated” into the vaccine guidelines as a priority. This prioritization of people with intellectual and developmental disabilities has not yet been adopted as a state-wide policy in Arizona.
Savings to the State
In addition to being the right thing to do because of the disproportionate impact COVID-19 has on DDD Members, it is also the right thing to do for Arizona’s taxpayers. Care for people who are hospitalized with COVID-19 is extremely expensive, often including long-term ICU care. This care is even more expensive if complicated by other health conditions that many DDD Members live with. On the other hand, the market cost for the Pfizer and Moderna COVID-19 vaccines are around $20-30 per dose. It is responsible stewardship of taxpayer money to ensure that people whose medical care is paid for by the state receive a vaccine that costs $60 or less, to avoid incurring tens of thousands of dollars per patient for hospital care. Furthermore, while vaccinating people in long-term health facilities is a good first step, there are many DDD members who live with friends and family outside of long-term care facilities, often at less cost to Arizona taxpayers. These DDD Members should not be denied priority status because they live independently, with their families, or other arrangement outside a long-term care facility.
The AZDHS Vaccine Portal Already Collects DDD Member Information
Importantly, it should be a simple process to ensure that DDD Members (or their paid or unpaid primary caretaker for non-qualifying members, like children) are vaccinated. The state vaccine portal already requires anyone registering for an appointment to provide their insurance information. DDD Members have unique Member IDs, and the group name “AZDDD” on their insurance card immediately identifies them as a DDD Member. In other words, the state portal, as it is currently built, could recognize DDD Members and allow them to make an appointment for a COVID-19 vaccination. Similarly, any non-state entity could use the DDD Member card to recognize them or their paid or unpaid caretaker as a person qualified to receive a vaccine. Given the increased risk of hospitalization and death DDD Members face as a result of their disabilities, it is critical that this group of people receive priority status for COVID-19 vaccines.
Local healthcare providers stand ready to answer the call. For example, Dr. Andrew Carroll, a family medicine doctor based in Chandler and the Board Director of the American Academy of Family Physicians, who is currently providing vaccinations to developmentally disabled people and the elderly living in long-term care facilities emphasized that “Persons with developmental disabilities have a significantly higher rate of bad outcomes from COVID-19 . . . Anything that simplifies the identification of these communities as well as facilitates the distribution of vaccines should be deployed immediately.”
This Recommendation is Made Pursuant to the DDAC’s Statutory Role as Advocates and Policy Advisors for the DDD
As members of the DDAC, our responsibility is to be the voice for people with developmental and intellectual disabilities in the state of Arizona, especially for those who may be unable to advocate for themselves. A.R.S. § 36-553. Providing priority status for DDD Members and their primary caregivers for the COVID-19 vaccine is an important policy objective to protect DDD Members and Arizona taxpayers. And we have proposed a concrete way to leverage the existing state vaccination portal, or other procedures used by county health departments and private providers, to make that prioritization a simple process.
Under the current vaccination schedule, thousands of Arizona’s most vulnerable people remain susceptible to a virus that could kill them or add significant adverse health outcomes to a population already coping with significant, chronic health conditions. Many of them simply do not have the ability to self-quarantine, because they rely on the help of others for basic tasks that many of us take for granted.
To ensure we are truly caring for our most vulnerable populations, we need to ensure our DDD Members receive priority for the COVID-19 vaccine commensurate with the risk they face. We are aware that at least one county (Coconino) that has recognized this issue and recently prioritized DDD Members for vaccinations regardless of age, but a person with disability’s access to this life-saving vaccine should not be determined by their county of residence. All people with developmental and intellectual disabilities deserve the same opportunity for protection from this deadly virus, a reality that legislators of both parties have recently urged Arizona to recognize.
DDD Members and their paid or unpaid primary caretakers should be prioritized for COVID-19 vaccination as soon as possible. Each day will either save, or cost, lives. The DDAC stands ready to provide whatever support we can to effect this policy change, and spread the word among the I/DD community.
Thank you,
Developmental Disabilities Advisory Committee
Trevor Rogers, Chair
Scott Lindbloom, Vice Chair
Kara Karlson, Esq.
Erin Carr-Jordan, Ph.D.
Stephanie Wirick
Richard P. Hargrove
Holly D. Patel
Allison C. Hall, Ed.D.
Renaldo Fowler
Douglas E. West
James D. Dixon
Kin Chung-Counts
cc: Dr. Cara Christ, Director AZDHS; Dana Goodloe, Chief, Immunization Program Office; Vaccine and Antiviral Prioritization Advisory Committee (VAPAC); Apache County Health Department, Cochise County Health Department, Graham County Health Department, La Paz County Health Department, Maricopa County Health Department, Mohave County Health Department, Navajo County Health Department, Pima County Health Department, Pinal County Health Department, Santa Cruz County Health Department, Yavapai County Health Department, Yuma County Health Department