Everything We Know About the COVID Vaccine for Individuals with Developmental Disabilities

March 5, 2021

Everything We Know About the COVID Vaccine for Individuals with Developmental Disabilities

While residents (and staff) in long-term care facilities, such as our group homes here at SCARC, were prioritized in the first phase of the COVID vaccine roll-out, this was not the case for individuals with developmental disabilities who reside in home-based settings. Thus, even two-and-a-half months after distribution began, many New Jersey residents with developmental disabilities have still not been able to access the vaccine.

Q: Why is it so hard to get a vaccine?

A: Social and traditional media are rife with stories of frustrated New Jerseyans who are struggling to get appointments for themselves or their loved ones. According to an NJ Spotlight article from mid-February, “The enormous public interest in the program has largely overwhelmed the state’s multi-faceted, decentralized vaccination registration system and caused growing frustration among those trying to schedule an appointment to be immunized. State officials created a telephone hotline, which has been swamped with calls since it opened several weeks ago.”

It’s also important to note that there is virtually no proof required to verify that you are among the current eligible groups. This means anyone could claim he or she is a smoker (all of whom were eligible early on) or has a qualifying health condition and “jump the line.” While we would certainly hope our fellow New Jerseyans are abiding by this “honor system,” this is not, unfortunately, the reality. And given how seriously the virus has affected New Jerseyans, it’s little surprise that there have been untold numbers of not-yet eligible individuals who have already gotten themselves inoculated. Frustratingly though, this only pushes vaccines set aside for truly eligible individuals further from reach.

Q: So, when ARE individuals with developmental disabilities (who don’t reside in long-term care settings) eligible for vaccination?

Currently, vaccines are available only to healthcare workers, long-term care facility employees and residents, first responders, those over 65, and those with certain conditions, such as obesity, heart conditions, and diabetes. The short list also notably includes any individual with Down Syndrome, but does not include individuals who have autism or other types of developmental disabilities.

Additional phases have been identified, but at present, it appears that many individuals with developmental disabilities are considered to be members of the general public, who have not yet been specifically prioritized. However, beginning Monday, March 29, frontline essential workers in the following categories are eligible for vaccination:

  • Food production, agriculture, and food distribution;
  • Eldercare and support;
  • Warehousing and logistics;
  • Social services support staff;
  • Elections personnel;
  • Hospitality;
  • Medical supply chain;
  • Postal and shipping services;
  • Clergy; and,
  • Judicial system.

You can get more information about upcoming eligibility phases and much more by visiting the New Jersey COVID-19 Information Hub.

Regardless of your eligibility status, the state’s COVID-19 Information Hub notes, “Even if you are eligible for receiving a vaccine, an appointment may not be immediately available to you due to significantly limited vaccine availability. New Jersey has developed an extensive network of vaccination sites to serve those currently eligible for vaccination, but vaccine supply is still very limited and will be for some time.”

Q: Once eligible, how do I get an appointment for the vaccine?

A: It will surprise many that simply pre-registering at NJ’s Vaccine Scheduling System doesn’t actually assign you an available appointment. All it does is notify you when you’re eligible to get the vaccine. It is still up to you to make the appointment! And given the limited vaccine supply and system’s many complexities, it’s essential that you be proactive about obtaining a timeslot. Those who do so appear to be much more likely to be vaccinated in a timely fashion than those who don’t.

Sussex County also has its own vaccine-registration system you should utilize by registering here using the email address where you’d like to receive notifications. As a block of openings becomes available, everyone who signed up will receive an email blast. You must respond to the email to schedule an appointment. These appointments will be scheduled in order of the receipt of the responses to the email blast. If you aren’t successful in scheduling a timeslot, you’ll continue to receive subsequent emails until you are able to make your vaccination appointment. Thus, it’s important to remain vigilant. You might consider setting up automatic alerts on your smartphone to notify you when an email message has arrived. Or setting an alarm to go off a couple of times a day to remind you to check your email.

Because there is no state-centralized means of setting appointments, there are other ways to check for openings throughout the region, including outside of the county. Visit the Sussex County COVID-19 vaccination information page for a list of sites in and around the county, updates on vaccine availability, and more. You can then contact the listed vaccine sites, which includes supermarkets and pharmacies, to inquire about available appointments.

Q:  My loved one with developmental disabilities isn’t comfortable visiting “mega” sites and/or receiving care from unfamiliar providers. Can his or her own physician administer the vaccine at the doctor’s office?

A: Unfortunately, most private providers are unable to accommodate the storage, handling, and dosage requirements for the two currently available vaccines. For example, the vaccines require ultra-cold storage and must be administered in multiple doses within a short, specific time frame. It’s also the goal is to vaccinate as many people as efficiently as possible, which is another reason why COVID-19 vaccines are not yet available in sites such as primary-care offices. Of course, it’s the eventual goal to bring these vaccines into private practices around the state.

Q: Can SCARC help my loved one receive a vaccine?

A: We are happy to report that most of the individuals who live or work in our group homes have been fully vaccinated via the Walmart in Franklin. We are grateful for the statewide (and federal) partnership with Walmart that enables their pharmacists to inoculate group home residents and direct-support staff who work within those homes.

Walgreens recently rolled out an initiative to vaccinate remaining staff as well as individuals who live at their own homes and are enrolled in SCARC day programs. Our first clinic was held on March 1, 2021, with our second clinic to be held on Monday, March 22nd. This will not only allow those who received their first round of shots get their second, it will also enable individuals who haven’t yet begun the vaccination process to receive their first. The clinics are held at our Dykstra Center, which is next to our administrative building. If anyone who attends our day programs still needs the vaccine, please contact Kate Imparato at [email protected]org to make a clinic appointment.

Q: What can I do if I still need help?

A: New Jersey’s COVID-19 Vaccine Call Center is staffed seven days a week from 8 a.m. to 8 p.m., is live. The toll-free number is 855-568-0545. The call center can assist residents with registering with the New Jersey Vaccine Scheduling System (NJVSS), verifying current eligibility, identifying vaccination locations and answering general questions about the COVID vaccines.

Of course, you can always contact Janis Woersching at [email protected] here at SCARC and she’ll be more than happy to assist in any way possible! In the meantime, please stay healthy and safe!