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.