The Dup15q Alliance seeks to pursue federal and state policies that will change the lives of individuals impacted by Dup15q Syndrome for the better. The following are issues that we believe merit action at this time. This page is updated daily to provide timely information. Please contact us if you have questions or need additional information at email@example.com.
HELP OUR DUP15Q COMMUNITY BY CONTACTING YOUR STATE OFFICIALS TO ADD PRIMARY CAREGIVERS OF PERSONS WITH CHRONIC MEDICAL CONDITIONS/INTELLECTUAL OR DEVELOPMENT DISABILITIES TO YOUR STATE DOH'S PHASE 1A DEFINITION OF “HEALTHCARE PERSONNEL” SO THAT THEY ARE ELIGIBLE FOR THE COVID VACCINE.
Did you know that the state of Virginia just added primary caregivers for persons with severe chronic medical conditions or with intellectual or developmental disabilities to their definition of “Healthcare Personnel,” so that these caregivers are immediately eligible for the COVID vaccine? You can advocate for this in your own state by taking the following steps:
1. Find out who serves as your State Senator and State Representative. The best resource to find this information is the following link: https://www.congress.gov/state-legislature-websites. Simply click on this link and then click on your state.
2. Obtain the phone numbers for your State Senator and State Representative and call them directly. (Phone calls are always more effective!) Here are some important talking points:
• You are a constituent and the primary caregiver of a child or adult with Dup15q Syndrome. Because of this diagnosis, you are dealing with multiple issues such as developmental disabilities, intellectual disabilities, and/or physical issues. Make sure to tell them that your child requires a high level of daily care.
• Because of your child ‘s diagnosis, he or she requires multiple therapies such as speech therapy, occupational therapy, physical therapy, and applied behavioral analysis (“ABA”) therapy. You may also want to discuss that your child is frequently admitted to the hospital for extended EEG’s, or various health issues if this is the case.
• Because of your frequent contact with health care providers and their facilities, that you should be eligible as “Healthcare Personnel” under your state Department of Health’s Phase 1a definition.
• Be sure to mention that Virginia just did this! Here is the wording that is now under Virginia’s definition of Phase 1a of Healthcare Provider: Primary caregivers for persons with severe chronic medical conditions or with intellectual or developmental disabilities requiring a high level of daily care.”
3. Ask these officials to help by contacting your state’s Department of Health to add this same language to their definition to the Phase 1A Healthcare Personnel in your state, and to make this one of their immediate priorities. If you speak to a staff member for the legislator, ask them to speak with the legislator and then to call you back. Lastly, make sure to ask them to take your phone number and to follow up on the steps that they take to help with this critical issue.