COVID-19 & Down Syndrome Resource published by GLOBAL and the national consortium – DSMIG-USA, GLOBAL, LuMindIDSC, NDSC, NDSS, and NTG. The Resource focuses on new and updated information specific to the Delta variant, vaccines for kids aged 5-11, COVID-19 boosters, breakthroughs, mental health, ways to stay safe in schools, precautions for people with Down syndrome, and advocacy. We strongly recommend you read through this important resource.
Any program or activities held by DSL will no longer be restricted starting June 11. We will continue to expect anyone who is not vaccinated to wear a mask. ANYONE is welcome to wear a mask at any time if this makes you feel more comfortable. *
For more detail about each program: CLICK HERE.
*SEE will continue as planned with school-like regulations.
We expect the Pfizer vaccine to be approved from ages 12 and up any day now.
Please refer here to find vaccine locations:
If you need any assistance finding a vaccine, please reach out to us at 502-495-5088.
4.7.21: Covid-19 Vaccines- What You Need To Know Webinar Recording
Access Passcode: COVIDsession2!
3.26.21: KY Vaccine
There are lots of opportunities at this point to find and secure a vaccination appointment. I know one challenge is with online systems and email addresses. Please let us know if this is a barrier for anyone and we can try to talk it through. There are more and more options for calling to set-up appointments too. Earlier this week we shared some opportunities around the state. Today I am sharing a couple of links that you can use to quickly identify open appointment slots near you.
This link takes you to the official KYCOVID site. When you scroll down there are links and locations with open appointments listed:
The following is a link I have seen on social media and have seen friends use to identify open appointments at major retailers like Walgreens, Walmart, and CVS:
3.24.21: Indiana Families – everyone over the age of 16 eligible beginning March 31
3.23.21: Kentucky changes it’s vaccine policy after questions about prioritizing people with disabilities, moves them to 1C
3.18.21: Limited Vaccines Available…
There are drive-thru COVID vaccine appointments available in Lexington today (March 18) and tomorrow (March 19) for people with intellectual and developmental disabilities, people (paid or unpaid) who support them, and any adults living with them. Appointments are not limited to Lexington residents. The vaccine is Johnson and Johnson. If you know anyone that is interested, please have them email their name, preferred day and time to Claudia Johnson at Claudia.firstname.lastname@example.org.
If you have any trouble contact please contact Shelly Durbin at 502-641-9463 or email@example.com
We are getting lots of people appointments today and tomorrow!
COVID-19 Vaccine – What you Need to Know Session #2
March 31st, 2021 @ 12:00 PM; Hosted by Special Olympics Kentucky
- Vaccine updates
- Questions submitted by YOU!
Because we want to provide updates that are meaningful to you and because we anticipate a large number of participants, we ask that you submit your questions as you register for the session. After registering, you will receive a confirmation email containing information about joining the meeting. Questions submitted by March 24th will be reviewed for relevance and to eliminate duplicates. Questions submitted after March 24th will be addressed as time allows in this session or will be saved for our next session.
Some local pharmacies in KY providing vaccine to 1C (including our members) if there is a supply. You can check for appointment availability here: https://www.goodrx.com/covid-19/kentucky#find-an-appointment
UPDATE 3/5/2021: “Getting the Vaccine” RESOURCE FOR KY WAIVER PARTICPANTS
A Guide to Getting the COVID-19 Vaccine for Waiver Participants
CLICK HERE: findingacovidvaccine
UPDATE 3/3/2021: COVID RESOURCE
IMPORTANT NEW COVID-19 & DOWN SYNDROME RESOURCE! Valuable, timely information on testing, vaccines, mental health, staying safe and advocacy in hospitals and for care. Down Syndrome of Louisville, Inc. is proud to support GLOBAL and the work of an impressive national consortium of Down syndrome organizations. This valuable and timely resource is available in English and Spanish! Read and share the COVID-19 & DS Resource.
Global also has a great state-by-state resource for vaccine information.
UPDATE 3/2: REQUEST APPOINTMENTS NOW in KY & Indiana
This was posted by the Clark County Health Department:
If you are ANY age and fall into these groups, first call your medical provider and ask them to put your name into the patient portal. Once this is complete, they will provide you with a registration link and/or you can call 211 to sign up.**NOTE: If you call 211 from a 502 area code you will be automatically re-routed to KY. So, here is the direct number if you need it: 866-211-9966. Initial groups of patients identified by their healthcare provider as highest risk of severe illness from COVID-19. These individuals will receive a unique registration link or may call 211
1C appointments are opening up to phase 1C which includes those individuals +18 with DS. There are various places to request an appointment.
Please let us know when/where you are having success so that we can add those sites here. firstname.lastname@example.org
Update 2/22: Advocating Continues…
- DSL is working with the KY Protection & Advocacy Office to advocate for those with DS to be vaccinated as soon as possible. Here is what has transpired:
1. We sent a letter to Governor Beshear, Secretary Friedlander, and Dr. Stack on December 14 based on Kentucky’s Draft Vaccine Allocation Plan. In it we asked:
- Persons with disabilities, their family members, associations, and representative groups be added to the Kentucky Health and Medical Preparedness Committee (HMPAC);
- Individuals residing in and staff working at Nursing Facilities (NFs), Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID) and Personal Care Homes (PCHs) be included in Phase 1A of Kentucky’s COVID-19 Vaccination Plan;
- Individuals residing in and staff working at SCL residential homes be included in Phase 1A; and
- Disability status be tracked in data regarding COVID-19 infections rates and deaths.
- On January 4, Kentucky’s Updated Allocation Plan was announced:
1A Long term care facilities, assisted living facilities, health care personnel
1B First responders, anyone age 70 or older, K-12 school personnel
1C Anyone age 60 or older, anyone age 16 or older with CDC highest risk C19 risk conditions, all essential workers
2 Anyone age 40 or older.
3 Anyone age 16 or older.
4 Children under the age of 16 if the vaccine is approved for this age group (est. 18% of KY population)
- Jeff Edwards and the office of P&A met on February 5 with the following Cabinet officials: Keith Knapp (advisor to Secretary Friedlander), Victoria Elridge (Commissioner, Department of Aging & Independent Living), Adam Mather (Inspector General) & Wes Duke (CHFS General Counsel). There we learned:
- Most 1915(c) waiver recipients (Supports for Community Living (SCL), Michelle P., both Acquired Brain Injury) are included in Phase 1A because they meet Long Term Care (LTC) Level of Care (LOC); this doesn’t include Home and Community Based (HCB) or Michelle P (MP) Waiver recipients as they don’t live in congregate settings
- All waiver service providers, including HCB & MPW and including Participant Directed Services (PDS) paid employees, are considered health care personnel and thus in Phase 1A; Commissioners Elridge (DAIL) and Lis Lee DMS) issued a memo on January 29, 2021 regarding paid PDS providers (attached)
- PCH residents and staff are in Phase 1A although considered “assisted living facilities”
- Down Syndrome is the only ID/DD diagnosis listed in the CDC’s highest risk conditions, making those individuals eligible under Phase 1C; there are no plans to add any other diagnoses
- CHFS recognizes and is concerned with vaccine hesitancy/resistance
- Members of the newly named Vaccine Equity Workgroup/Task Force: Anne Wildman, Steve Shannon, David Allgood, Kathy Sheppard-Jones, and Laureen Vassil; they’re willing to add persons with disabilities and will accept P&A recommendations. David shared during our meeting that this group had its first meeting last Friday, February 5, but he was unable to attend.
- CHFS hasn’t been tracking disability status and has no plans to do so
After discussion of this information, the group decided that we should write a follow-up letter, asking for the following:
- Persons in HCB & MPW should be in Phase 1A as they meet LTC LOC, no matter where they live
- Additional ID/DD diagnoses (perhaps calling it neurodevelopmental diagnoses) should be added to the Phase 1C as data is growing that this group is at a higher risk of getting COVID and having worse disease progression/outcomes
- Consideration should be given to prioritizing individuals “residing” in state owned and operated psychiatric hospitals; there are a number of individuals who have been in these hospitals more than 60 days, some for many years
This letter was sent 2/20/21.
Once 1C is available we are hoping to make getting the vaccine as easy as possible for our members. Stay tuned – we will keep you updated as soon as we know more.
According to this article, we are hoping that 1C will be opening in KY sometime in March.
You can always check the status of the phased roll out here:
Additional COVID & DS Resources:
For Indiana Families: Here is the latest update on COVID-19 Vaccine info.
A little good news today:
1. There are now more vaccinated Americans than confirmed cases of COVID-19 and
2. DAIL (Department of Aging & Independent Living) has announced that PDS employees will be eligible for the COVID-19 vaccine.
To sign up for a vaccine, PDS employees should indicate that they are “health care workers” on their vaccine registration. PDS agencies may consider providing PDS employees with a letter (on letterhead) indicating that the PDS employee is a health care worker as many vaccine sites require identification.
To sign up for a vaccine please visit this site: https://govstatus.egov.
Today we partnered with Special Olympics Kentucky for a very informative COVID-19 Vaccine webinar with Dr. Chandan and Dr. Harris. They answered many of the questions that our families have been asking.
COVID-19 Vaccine – What You Need to Know ZOOM Session
I’m excited to tell you about an upcoming Zoom session led by local physicians and researchers who have been advocating on our behalf. It is in conjunction with our friends at Special Olympics KY and is scheduled for Wednesday, Feb. 3rd at 12 p.m. I encourage each of you to register AND please feel free to invite your family members to join. Be sure to use the link below to register today and submit any questions you may have. (you can still register even though it says questions are due by the 26th)
COVID-19 Vaccine – What You Need to Know ZOOM Session
We will cover topics such as:
- Who is most at risk for getting sick from COVID?
- What is a vaccine?
- Why do people get vaccines?
- Myths vs. Facts
- How does the COVID vaccine work (including possible side effects)
- Where can I find information and updates about when I can get a COVID vaccine?
This will be a live session with the doctors with a Q & A portion after the presentation. Because we anticipate a large number of participants and duplicate questions, we ask that you submit your questions as you register for the session using this link:
After registering, you will receive a confirmation email containing information about joining the meeting. All questions will be reviewed for relevance and for the purpose of eliminating duplicates.
Dr. Priya Chandan, MD, PhD, MPH
UofL SOM Division of Physical Medicine & Rehabilitation
UofL Health Physicians Restorative Neuroscience
Global Clinical Adviser, Special Olympics MedFest
Project Director, National Curriculum Initiative in Developmental Medicine
Commonwealth Scholar, Commonwealth Institute of Kentucky
Special Olympics Kentucky Board Member
Dr. Corrie Harris, MD, MSc
Associate Professor of Pediatrics
Division of Pediatric Hospital Medicine
University of Louisville School of Medicine
Associate Medical Director, The Home of the Innocents Pediatric Convalescent Center
Special Olympics Kentucky Board Member
Vaccine Advocacy Update 1/26/2021
I wanted to give everyone a quick update on our strategy as we advocate for the vaccine. There is a group of local physicians and researchers who are drafting a letter/request to the Health Department that will be sent very soon. After discussion with these advocates, we have been asked to be patient. We do not feel it would be advantageous for us to send multiple requests/petitions without proper research and support for our request. Requests that are supported by facts, data, and policy suggestions are much more likely to be considered and this is what this team of professionals is working on now. Current research shows that adults with developmental and intellectual disabilities are most at risk of potentially poor outcomes, so this is the population that they are asking to be moved up ASAP.
In addition, some of these physicians will be holding a Zoom- Question and Answer session on Feb. 3rd for DSL and our friends at Special Olympics KY. As SOON as we have more information to share with you about this session, we will.
Finally, we have not heard any updates on the potential Kroger partnership, but will keep you informed on that as well- when information becomes available.
We understand that everyone’s anxiety is high and that is for good reason. Please know that we are working and collaborating with valuable partners in hopes of getting vaccines for our members and their families as soon as we can. The new administration gives us great hope that vaccinations will be coming at a faster pace- stay tuned!
Mayor Greg Fisher held a briefing today that explained more about our local vaccination process and new recommendations. See the briefing here.
Down Syndrome of Louisville
* Update 1/18, Biden Vaccine Plans
On Friday, President-elect Biden released his COVID-19 vaccine plan, it is attached. I have summarized a few of the plan’s highlights below.
- Get more people vaccinated:
- Encourage states to allow more people to be vaccinated as implementation has been rigid and confusion.
- Ensure equity through the vaccination process to reach those in hard to reach or marginalized communities.
- Create more vaccination sites:
- Set up new, federally supported community vaccination centers.
- Deploy the National Guard to support vaccinations.
- Launch mobile vaccination clinics.
- Make vaccines available in pharmacies
- Increase vaccine supply and get it out the door quickly.
- Mobilize more personnel to administer shots.
Additionally, we are thrilled that the plan specifically mentions the IDD population:
“Launch new models to serve high-risk individuals. The Administration will make programs available for high-risk congregate settings, including homeless shelters, jails, and institutions that serve individuals with intellectual and developmental disabilities”
While many Kentucky providers have been successful in getting participants vaccinated, this is a huge advocacy win!
-Amy Staed, KAPP
Adults with DS are hopefully able to SIGN UP for the vaccine beginning Jan. 28th
(Tier 1C able to make appointments)
“The first Kroger regional, drive-through vaccination sites will open the week of Feb. 1 for Kentuckians in Phase 1A, 1B and 1C. For more details on who is included in each phase, (see hyperlink within website above). On Jan. 28, the Governor said more details would be announced on-site locations and how to sign up.” See full article.
It is important to know that: Kroger is establishing a website and a hotline for vaccine appointments. Kroger will begin making appointments on January 28. So we will know more then.
** As with most things these days, this is subject to change! There is a lot that needs to be coordinated between now and Jan, 28th.**
Volunteer to Help!
If you are able, please sign up as a volunteer to help with local mass vaccination efforts…this is a huge effort and all-volunteer types are needed!