Monday, January 18, 2021

Not OK: Vaccines for Healthy 65+ While Our Family Members Go Without

 As always, please refer to my page over to the right, “D.C. Disability-related Organizations and Terminology” if you’re confused about any of the terms I use in this blog post.

First, the good news:  The staff working for agencies that provide supports under the DC IDD waiver are now eligible to get the covid vaccine.  However, if any of you have been on the community calls that DDS director Andy Reese hosts on Fridays (contact Charlisa Payne at to sign up for notifications), then you know I have not been happy about the DC Health decision to make covid vaccines available to all DC residents 65 and older before most people below 65 who get support under the IDD waiver become eligible.  In DC, only waiver recipients in intermediate care facilities (ICFs) or residential habilitation (group homes, also known as community residence facilities, or CRFs) are currently eligible for the vaccine in DC.  I do know that people over 65 (a category I belong to) tend, as a broad group, to experience more serious symptoms than younger people – but many jurisdictions, including Maryland, are focusing on 75+ initially, in recognition that there are a great many healthy people in the 65-74 age group who are also able to shelter safely from the virus.  

So people 64 or under who are getting support under the IDD waiver are still waiting to be considered for the vaccine and will have to demonstrate they have underlying health conditions making them “high risk” (with no decision having been made yet about what documentation will be needed to show this is the case). On January 8, Andy Reese reported a “huge” increase (32) in December of covid cases among those in “supported living” residential settings, and on January 15 he announced another 9 cases in supported living so far in January.  As a point of comparison, so far during the pandemic, as of January 15, 111 people, or 37%, of DC residents in ICFs had tested positive, and 166 people, or 17.8%, had tested positive in supported living – but supported living is the fastest-growing group, while cases in the ICF group are slowing down and those people are already vaccine-eligible.

DDS reported on January 15 that among people getting IDD supports, just under 400 people in ICFs or group homes are now eligible for the vaccine, along with another 200 people 65 or over.  Doing basic math, this suggests that about 600 people, out of a total of 2400 people getting waiver supports, already have access to the vaccine.  That leaves 1800 or so under the waiver, about half of whom are in supported living and others in their own, so-called “natural home”  (a term I dislike) or a handful of other residential settings. 

Rather than requiring laborious documentation to prove underlying health conditions, these remaining people under the IDD waiver need to be moved up in the queue, immediately.  Given their living situations and what the numbers now show (a full 15% of people under the IDD waiver have tested positive), they are already “high-risk” and need to be considered that way.  I have reached out to DC Health (in my role as chair of the DC DD council – see, and so far I have not gotten a satisfying response.  We need to keep the pressure on until it happens - for the time being, let Andy Reese know how you feel -, today.

Sunday, January 17, 2021

This Week, Help Us Build a Better System of Supports in D.C.!

When I first began this blog back in 2014, I felt I was all alone in confronting problems I saw in the support system for my son and others like him.  In the years since, I’ve discovered many other individuals and organizations who were in the fight before I was, and who continue to try to advance disability rights in D.C. and ensure that supports reach those most in need of them.

Even with two extremely important holidays on the calendar, this coming week is going to bring several opportunities for you to expand your knowledge about how the D.C. system of disability supports works now, and how you can help us make further progress in both the near and longer term:

·       On Tuesday, January 19 at 10:00, there will be another session in the series I mentioned in my last blog post, on “Assuring Rights During Covid-19.”  This presentation, on which I’m co-presenter, clarifies the rights that people who are getting supports under the DDS-administered IDD waiver have, even during a pandemic like the one we’re experiencing. You can find more at  To sign up, contact Emily Ornstein (

·       On Thursday, January 21, at 10:00 and at 1:00, the Developmental Disabilities Council ( will hold two more community forums to get your input on where the DDC should focus its efforts during the 2022-2026 state plan.  As a reminder, the DD council is federally mandated and federally funded, and exists ”to strengthen the voice of people with developmental disabilities and their families in DC in support of greater independence, inclusion, empowerment and the pursuit of life as they choose.”  Here’s all the information, along with how to register:

·       Also on Thursday, January 21, at 7:00 p.m. (and again on Wednesday, January 27 at 1:00 p.m.) families with children still in the school system, as well as others who may be interested, can join a community forum focused on the limitations on eligibility for the current D.C. system of supports for adults with developmental disabilities, and the work that’s being done to build a more equitable system.  Find further information and how to register at:

All of these sessions are well worth your effort, but we know your time is limited.  Reach out to organizers even if you’re unable to attend, since there will be further opportunities to learn and get involved on all three of these important topics.  I’ll look forward to seeing you there -

Thursday, January 7, 2021

Family Sessions on the Rights of People Receiving Supports During the Pandemic

Given the events downtown yesterday, it seems strange to say Happy New Year, but I will say to you that I hope your 2021 has gotten off to a smooth start at the personal level.  Heaven knows the same is not true for our country, but hopefully that will change soon.  We can at least be happy about the news from Georgia.

Now, business.  I’ve written here before about the work done in the summer and fall to develop a presentation for provider staff on the rights of people being supported through the D.C. DDS waiver during the pandemic.  Recently I’ve been working with Emily Ornstein at DDS to adapt that presentation for parents and other family members.  The presentation is now ready, and the first sessions on “Assuring Rights During Covid-19” will be offered next week:

-          Monday, January 11 at 10:00 and 

-          Friday, January 15 at 10:00

If you have had issues with your family member’s provider agency, or you just have questions about what your role is in supporting those you care for to make well-informed decisions during the pandemic, you will want to attend one of these or other upcoming sessions.

To sign up, contact Emily Ornstein (, today!  You can find more details here: