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:

Sunday, November 29, 2020

Positive Developments in this Challenging Year

 As you read this blog post, it may help you to refer to one of the informational pages you’ll see over to the right, showing important organizations and terminology as well as current information about the Council of DC.

In the midst of this year of isolation and loss, people have come together on a good number of initiatives that will be sources of new strength for the disability community in DC as we emerge from this pandemic in 2021.  Here are some of those you should know about, if you don’t already:

-          Andy Reese and his team at DDS have brought us together through community calls since late March, right after the mayor declared a public health emergency.  These forums have brought self-advocates, families, other advocates and provider agencies together to hear important updates from DDS and DC Health ( and to share information with one another.  Bravo, Andy, and thanks.  (Contact Charlisa Payne,, if you don’t get the notifications.)

-          As people supported through the I/DD waiver suffered disproportionately from covid-19 throughout the spring, the focus was all about ensuring safety.  Once the mayor announced in June that the city was moving to Level 2 reopening, it was time also to ensure, as the pandemic continued, that the fundamental rights of people receiving DDS supports were being preserved.  Starting in July DDS convened a group, on which I served along with others, to develop an interactive presentation on supporting people to make informed decisions about community participation during the pandemic.  This presentation has been used since August to train provider staff, and is now being tailored for other audiences including self-advocates, lawyers and family members.  Emily Ornstein ( is the point of contact for more information on this.

-          Throughout the pandemic, advocates have been concerned about the number of people who are “invisible” because they don’t qualify for supports from DDS under its very restrictive eligibility criteria.  (The I/DD waiver is available only to people who received an IQ score of 69 or below before the age of 18.)  This has re-energized efforts to revise the eligibility requirements for the I/DD waiver (search “eligibility” over to the right for lots more information), and the chair of the Council of DC’s human services committee, councilmember Brianne Nadeau, has agreed to chair a working group to begin addressing this longstanding inequity.  The working group had its first meeting in October, and while impending changes on the Council of DC may affect the process, councilmember Nadeau has provided her personal assurance of continued engagement on this issue.

-          Under the auspices of the Developmental Disabilities Council (, the Disability Community and Policing Working Group met through the summer and into the fall under the chairmanship of Ron Hampton to prepare recommendations for the DC Police Reform Commission convened by Council of DC chair Phil Mendelson (  In October the working group forwarded its proposals for restructuring the MPD and related organizations to improve interactions with DC residents who have developmental and other disabilities. Those recommendations are here:  The Commission already has invited representatives to a follow-up meeting, just the start of what will hopefully be an ongoing dialogue and a means to promote concrete improvements.

-          The second annual conference for Latino/a/x people with disabilities and their families took place in September (, and a follow-up workshop took place on November 20, with a further one scheduled for December 18.  Contact Mark Agosto ( or Alison Whyte ( for further information.

-          The DD Council ( is beginning work on its 2022-2026 state plan, and wants your input!  Click on the above link to take the survey!  Also note the times of upcoming virtual focus groups beginning December 1.  Alison Whyte ( is your contact for this as well.

-          The state plan, as well as other initiatives by the DD Council, will be on the agenda of the next DD Council public meeting, which I’ll be chairing from 3:00 to 5:00 on December 17.  Watch this space: for more information.

-          Learn the Signs. Act Early is a public awareness campaign to educate parents about early indicators of autism and other developmental disabilities.  A group began meeting in December to develop the workplan for DC’s “Act Early” team.  More information can be found here: 

-          Starting in October, Project ACTION! began holding virtual monthly meetings, and the next one will be happening on December 19.  Phyllis Holton ( can tell you more.  But I want to add here the importance of the presentation that Thelma Green and Germaine Payne gave on the September 4 DDS community call, in which they drew attention to the ongoing need for self-advocates to have access to technology and to get help with using it, so they can participate in virtual events and activities.  Donald Clark ( is responsible for DDS’s Technology First initiative, which will be taking a closer look at ways in which DDS can ensure this is happening more routinely.  This is long overdue, and can be an important positive outcome of the pandemic. 

So the pandemic is keeping us from gathering in person, but not preventing forward motion on many, many important initiatives.  As you move through the winter months, think about latching onto some of these – everyone’s voice, everyone’s effort, is important!


Through this blog, Carol Grigsby shares information and advocates on issues affecting her son and other residents with developmental disabilities in Washington, DC.  She chairs the DC Developmental Disabilities Council, as well as serving on the DC Family Support Council and the board of the Quality Trust for Individuals with Disabilities.  Views expressed here are her own, not those of these organizations.  Carol retired from the federal government in 2011 and has lived in DC since 1978.

Tuesday, November 24, 2020

Thanks for All of You

Through this difficult time, what has kept me stabilized and optimistic has been my interactions – even though virtual – with so many of you in various meetings and conversations.  The opportunity to collaborate with such well-intentioned and enthusiastic people, even when the issues we face are hard, has been invaluable. 

I know that some of you have lost family or friends over the past few months, and others of you have struggled with your health, finances and other challenges.  It may be hard to feel thankful.  I lost a family member back in the spring myself.  But last night I was watching a show about the meeting of the Plymouth settlers and the Wampanoag people that we’ve come to know as Thanksgiving, and I was reminded that that event came on the heels of tremendous losses for all concerned.  It’s a day of mourning for many Wampanoag, to this day.

Whether you approach this week in a spirit of mourning, or in a spirit of thanks – or both – take time to appreciate the people who live with you, who support you in person or virtually, and who work for a better world.

Thanks to, and for, all of you.  Take care, mask up, and stay safe this week.

Monday, November 9, 2020

A Government that Sees Us

I don’t know about you, but I’m breathing again.

I didn’t intentionally not write anything here through the month of October:  it just happened.

I have been busy on a number of advocacy fronts, and I’ll write more about those later.

Really, though, I think I’ve mostly been holding my breath – like most of you, I imagine.

Here is the disability policy of the outgoing Trump administration:

Here is the disability policy of the incoming Biden administration:

And on Saturday night we were even included in the president-elect’s speech.

Yes indeed – we have a ways to go, but I am surely breathing once more.

Monday, September 28, 2020

One More Big Event this Month!


Earlier this month I posted about a number of events coming up before the end of the month – but now the news is out about a very important event, happening for just the second time ever in D.C. (and first time virtually!).  That’s the Latina/o/x conference, taking place on Wednesday, September 30 at 11 a.m.:  This is a collaborative effort to bring up-to-date information on disability supports and issues to Spanish speakers and others.  It will be an informative and action-packed hour and a half – DO NOT MISS IT!

Tuesday, September 15, 2020

Give a (Virtual) Hug to the Direct Support Professionals in Your Life!

In my most recent post, I missed the most important "event" of all - THIS WEEK IS DIRECT SUPPORT PROFESSIONAL RECOGNITION WEEK!  When you think about all they're doing in this pandemic, they deserve more appreciation than ever: according to D.C. DDS, 314 DSPs in D.C. have contracted covid-19, and 9 of them have lost their lives to it.  

So make sure you take the time to express special thanks this week to the people who make our loved ones' lives easier and happier -

                  THANK 💕 YOU

Upcoming Events that Matter for D.C.'s DD Community!


We’ve all been mostly home for the past six months, and I know that virtual events are getting old.  But a lot is getting accomplished and there are some new opportunities on the horizon this month:

 -          This week and next, SchoolTalk, along with partner organizations Quality Trust and Got Transition, will be holding the annual Voices of Change conference addressing transition issues - see for full information.

-       -            This Thursday, September 17, the Family Support Council will hold its bimonthly public meeting, 12:30-2:30.  Here’s the agenda:

-         -        If you’re wanting some fun in support of a good cause, join a virtual cooking class at 5:30 on Tuesday, September 22 – proceeds go to Quality Trust!  Sign up here:  AND

-        -         Next week, on Thursday, September 24, the D.C. Developmental Disabilities Council will hold its quarterly meeting – watch this space: for more information.

Friday, August 28, 2020



Things may seem quiet, but important D.C. advocacy work and activities continue on virtual platforms:

 -          Rights of people during the pandemic. Over the last two months I’ve been part of a team helping DDS develop training guidance on protecting people’s rights during the pandemic.  Beginning next week DDS will be rolling out this training, entitled “Assuring Rights During Covid 19.”  Most DDS service coordinators have already received the training.  I’ve written frequently over the summer about the fact that some DDS provider agencies have been imposing their own restrictions on people’s movements and outside contacts during the District’s reopening, but this training should address that concern.  For more information contact Emily Ornstein at 

-          Getting some day services under way.  As of today, nine DDS day-services providers have submitted their reopening plans to DDS, and the first DDS responses will go out next week.  Individuals’ CPAQ (Community Participation Assessment and Questionnaire) meetings, to discuss people’s interest in, and specific support needs, to enable re-engagement in day services, are also starting up.  For people needing employment readiness services, DDS is indicating that there will be close coordination between the DDA and RSA sides of the house, with RSA counselors set to attend team meetings and a focus on moving people toward paid employment on an accelerated timetable.  Contact Kirk Dobson at for more information.

 -          DDS Friday calls. Each Friday at noon, Andy Reese continues to host calls to update the D.C. community on how the covid crisis, and the city’s response to it, is affecting the people it supports.  Archived recordings of those calls as well as other key covid-related information can be found on the DDS website at

 -          Memorial service being planned.  As of Friday, August 28, 33 people receiving DDS supports have died due to covid-related causes.  A group is meeting periodically to plan an in-person memorial gathering in the fall.  If you’re interested in being part of the planning, contact Rebecca Salon at

 -          Police interactions with the disabled community.  A group continues to meet on Mondays under the umbrella of the DD Council to consider recommendations we want to make about improving MPD interactions with disabled people.  Ron Hampton, former MPD officer and current president of the D.C. Autism Society chapter, is leading this group.  If you’d like to join the dialogue, please be in touch with Alison Whyte at

 -          New school year. The new school year is upon us, and although it will start virtually, parents are scrambling to make preparations.  (See Laura Lorenzen, the new DC liaison for MANSEF (see, joined a regular call of disability advocates on September 26 to talk about challenges parents are facing in obtaining necessary immunizations for their children, and the need to extend the waiver of telehealth licensing requirements, which is set to end on October 9.

I’ve spoken personally with any number of you over recent weeks, and I know we’re all managing as best we can.  Fortunately, our region is doing better at weathering this period of crisis than many other parts of the country, but we all need to be alert, careful, and mutually supportive.  Keep track of the latest D.C.-wide information at