In a letter to Governor Tom Wolf and the Vaccine Task Force, PADDC Executive Director, Lisa Tesler, outlines the initiatives needed to insure that Pennsylvanians with intellectual disabilities have full access, and the supports needed, to receive the COVID-19 vaccines. Following is the full text of the letter.

March 10, 2021

Dear Governor Wolf and Members of the Vaccine Task Force,

We are grateful for your leadership during this crisis and the extraordinary efforts across multiple government agencies to respond to the challenges that the COVID-19 virus has created. As vaccines are now becoming available, we can see light at the end of the tunnel. However, it is essential to ensure vaccinations are provided to those most vulnerable and at risk, including individuals with intellectual and developmental disabilities.

A new study from Jefferson Health published last week in the New England Journal of Medicine (NEJM) Catalyst, found that “Covid-19 has had a devastating impact on individuals with intellectual disabilities. In this study, having an intellectual disability was the strongest independent risk factor for presenting with a Covid-19 diagnosis and the strongest independent risk factor other than age for Covid-19 mortality.” This level of risk warrants an immediate response and dedicated resources, similar to the special allocation identified for teachers.

Currently, there are no specific supports or plans in place to assist individuals with intellectual disabilities who are not living in licensed residential settings. This lack of support means that most people supported by the Office of Developmental Programs (ODP), those who live in private homes, are left on their own to figure out where and when they can get a vaccine. Many of these families do not have the information they need, internet access or the capacity to navigate the online vaccine distribution websites and tools. And if they can access the information, they repeatedly find that there are no appointments available and are instructed to try again later. This is leading to frustration and stress. Often, individuals are unable to wear masks or maintain social distancing, therefore families cannot enter any community settings, have little or no services in place, and are completely isolated. These individuals and families need help.

To address this need, PADDC recommends a coordinated effort to assure that all individuals with intellectual disabilities have the support they need to be vaccinated. We ask for a dedicated vaccine allocation for this population and support through the Office of Developmental Programs (ODP) and the provider network to provide direct support to assist with:

  • Setting up vaccine clinics and/or finding vaccines and scheduling appointments for individuals
  • Coordinating no cost transportation to the vaccine site, if needed
  • Assuring accessibility and accommodations at the vaccine site
  • Helping unpaid caregivers get their vaccines
  • Scheduling in home vaccinations for those who are unable to leave their homes.

Additionally, we recommend a targeted outreach campaign to provide information about the vaccine, educate individuals with disabilities about their priority status, and offer clear instructions about how to find help to get the vaccine. We know that ODP only serves approximately 25% of the individuals with intellectual and developmental disabilities in Pennsylvania. Individuals who are not connected to the formal service system have the same increased high risk of adverse impacts from COVID 19 and need access to the vaccine. We ask that the services in place to support individuals served by ODP to get the vaccine also be provided to those who are not enrolled in services.

Thank you for your ongoing efforts during this global pandemic. The loss of life has been tragic and heartbreaking, disproportionately impacting individuals with disabilities and the elderly. We appreciate the extraordinary measures that have been undertaken to try to slow the spread of COVID 19 and care for those who have fallen ill. Now, as we begin to feel the hope associated with the availability of safe and effective vaccines, we must remain committed and diligent to protect the most vulnerable. PADDC stands ready to be a resource and is available to provide technical assistance and information dissemination to the disability community. Thank you for your time and attention in this matter.

Sincerely,

Lisa Tesler
Executive Director
Pennsylvania Developmental Disabilities Council