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

Thursday, August 6, 2020

John Lewis Legacy

When I read my (print edition) Washington Post each morning over breakfast, I routinely flip past the full-page ads.  Today, though, page A5 grabbed my attention and held it.  A full-page photograph of late U.S. representative John Lewis is accompanied by the words, “I’m so blessed that my father’s story – as a servant leader and champion for civil and human rights – was shared with you, the people of D.C.” 

There have been so many tributes to John Lewis recently, but this one had a special, personal impact.  It was directed to us, the people of D.C.  We so rarely see ourselves, as people, recognized by anyone other than our mayor or other political leaders in our city.  Coming from John Lewis’ family, this acknowledgement sent a lump into my throat.

Just take a look yourself.  And while you’re there, you can leave a tribute to this great man at

Tuesday, August 4, 2020

The Mayor's Reopening Applies to People DDS Supports

In a blog post several weeks ago (, I pointed out that some DDA provider agencies continue to resist the idea that the mayor’s reopening guidance applies to the people they support. 

If there still was any confusion on this point, it should have been made crystal-clear as of yesterday when DDS posted this guidance:  

Please share this widely, since people’s rights continue to be restricted and it needs to stop now.  This is indeed a time of risk, and good support and guidance are needed.  But rights still are rights.

Monday, August 3, 2020

Helping a Friend in a Time of Trial

Many of you know Heidi Case, who used to be the Project ACTION! coordinator and now chairs DDOT's Multimodal Accessibility Advisory Council (MAAC).  She has recently suffered a grievous loss and now has funeral and related expenses for which she has established a GoFundMe page:  Please give if you can.

Sunday, July 19, 2020


It’s been a month since I first wrote about the lack of clarity from DDS about providers’ responsibilities as the District advanced into Phase One reopening.  Now we’re in Phase Two, and things haven’t improved much, if at all.

On June 27 D.C. DDS issued guidelines for supporting people under D.C.’s Phase 2 reopening:  Andy Reese, DDS director, has continued to state in the Friday community conversations ( that, except for some specific DC Health guidance for intermediate care facilities (ICFs) and residential habilitation (group homes), there are no restrictions placed on full participation in D.C.’s reopening by people receiving residential supports, and provider agencies are not empowered to apply such restrictions.

As the Phase Two guidance above indicates, DDS has established an assessment tool, the Community Participation Assessment and Questionnaire, or CPAQ (, to help identify the supports that individuals need as they consider re-engaging in waiver-supported day services.  DDS has repeated over and over that the CPAQ is not intended to restrict people’s movements in the community, but rather to guide the team concerning the types of supports a person needs.

None of the repeated statements on the Friday calls have made any difference.  Some providers still seem confused, while some are intentionally disregarding the guidelines.  The answer from DDS has been: lots of training, and now a more specific Power Point that is being developed to make things clearer.  Maybe this will make a small difference.  But more to the point, DDS, at the most senior level, has to put teeth behind the guidelines and insist they are followed.  Then, in individual CPAQ meetings and other team deliberations, service coordinators must keep the rights of the person at the forefront of the discussion, with the focus on supports rather than restrictions.

Some of you may read this and think: you can’t prioritize rights over safety!  And I agree.  Everyone needs to be following guidance found at, and Mayor’s Order 2020-063 ( continues to apply.  But here’s the thing:  there is increasing evidence that the most likely environments for contracting covid-19 are enclosed, air-conditioned indoor spaces.  This means that the instinct by some providers to continue confining people indoors - besides the mental-health consequences of isolation - is precisely the wrong reaction.  DSPs, however essential, can carry covid into living spaces without knowing it, and members of the general public come and go in apartment buildings’ common areas, potentially bringing the virus with them.  And it’s happening: as of July 17, of the 212 covid cases among those DDS supports, 89 of the people were in supported living – the largest single group (77 have been in ICFs) and over 40% of the total. 

But providers don’t listen to me, they listen to Andy Reese (  What matters here is what DDS is prepared to enforce.  And the answer to that is the least clear of all.

Saturday, June 27, 2020


Well, the House of Representatives did it!  They voted yesterday to create the state of Washington, Douglass Commonwealth, leaving a smaller federal district containing the core of downtown federal buildings.  This is a hugely historic event, marking a level of acceptance even by the national Democratic party that we’ve never seen before. (The only Democrat who opposed was Rep. Collin Peterson of Minnesota - - whose biography doesn’t explain why he opposes democracy.)

Okay, we all know that in spite of all the arguments about our paying more taxes per capita than any state, having a larger population than two states, etc., etc., the current Senate will never take up this bill.  (We'll see about the future Senate!)  Nevertheless – nevertheless – THIS IS HUGE! 

I do not always agree with our mayor, but I have to say her statement yesterday, in today's Post (, is one I think we all can share: “ ‘Power concedes nothing without a demand. And statehood is our demand,’ the fifth-generation Washingtonian said in a statement, referencing a famous quote from abolitionist and onetime D.C. resident Frederick Douglass. She added: “I was born without representation, but I swear — I will not die without representation. Together, we will achieve DC statehood, and when we do, we will look back on this day and remember all who stood with us on the right side of history.’ “


Wednesday, June 17, 2020

And Now - So Much to Say!


The trouble with having written infrequently in recent weeks is that now, I suddenly can’t write fast enough.  This blog post is about a number of upcoming events and important issues – I know I won’t think of everything but feel free to add something in the Comment box below if you like.  Here goes:

-          TOMORROW! June 18 – will be our second quarterly DD Council meeting.  Last time we had a number of technical difficulties, but hopefully there will be fewer this time around.  On this page you’ll find the “Click Link to Join” button. 

-          On June 23, 3-5 p.m., Quality Trust will host another session in its Family Town Hall series, this one on hospital visitation in the era of covid-19.  Key information on registering is here and you can contact Rhonda White at for further information.

-          June 23 is also the deadline for testimony to be sent to the DC council’s education committee on the DC public library (DCPL) budget for fiscal year (FY) 2021.  The very bad news for our community is that there will likely be reduced library hours and even closures of a number of branches.  Write to and let the committee know we can’t let this happen!

-          I wrote in my last blog post ( about the issuance of regulations for the proposed Individual and Family Services waiver and for amendments to the existing IDD waiver.  Here is updated information on those, as promised:

o   New IFS waiver:  Note that there will be a public forum on June 24 and that comments are due by July 13.

o   Waiver amendments:  Note that there will be a public forum on June 25 and that comments are due by July 13.

-          If you’ve been reading my blog for a while, you know how much I care about DC statehood.  One positive outcome of the president’s disgraceful photo op and military show of force on June 1 was to attract more attention to D.C.’s second-class status and lack of representation.  Now the House of Representatives has, at last, scheduled a vote on H.R. 51 – it’s scheduled for June 26!  Read more:

o   Here:

o   Here:

o   And here:

Keep reading, keep the comments coming, and again:  Stay safe, stay determined.


I’m gearing back up and hope to be writing more often.  This blog post will quickly be followed by one on several upcoming events and issues, so read both of them.  I had planned to get that one out first, but I now realize I need to get an important issue before you today, because it’s evolving very quickly indeed.

As you know, the District is in Stage One (or Phase One, the terminology seems to keep changing), which has allowed things to open up somewhat for most of us.  How soon we get to Stage Two is still unclear.  But this issue has to do with whether people getting supports under the DDA waiver are able to enjoy the same rights as the rest of DC’s residents as we move through the different stages.  I know this is a complex issue with many different facets, but we need to make sure we don’t throw out years of civil rights efforts in our zeal to keep people “safe.”  I put quotes around the word “safe” because there are indeed mental-health aspects of continuing to be isolated which, as we all know firsthand, are unsafe in and of themselves.

As a parent of someone receiving supported-living services in DC, I’ve been grappling with this issue myself over the past week to ten days, instinctively feeling that Stage One should apply to my son but observing that this was not quite the message he was receiving in his ISP meeting, nor apparently in his day-to-day life.  I sympathize with provider agencies who are trying to navigate this without clear guidance.  Last Friday on the DDS call, one provider did ask this question, specifically with respect to people going out with family (we all know, or should, that visits BY family to people’s homes is still prohibited).  I was very happy to hear Andy give the sort of answer I had hoped for:  namely, people DDS supports have the same rights as any other resident of the District – to go out for any allowed activity and to any place that is open under Stage One, as long as they are respecting necessary public-health guidelines.

That is what Andy said, and I know his heart was in the right place.  However, a verbal response during a Q and A is not definitive, and I’ve heard through the grapevine that some other issues are now coming into play – guidance from the federal Centers for Medicare and Medicaid Services (CMS) that may or may not apply, other local guidance, as well as pending guidance from DDS itself.  I know that all of this is a lot to absorb and analyze, but I hope DDS was already doing so, at least from the moment that Stage One came into effect on May 29.  Folks cannot be flying blind at such a critical moment.

And it should go without saying that I hope whatever guidance DDS issues will tip clearly in favor of the rights of people with disabilities – they should be able to go out and do the same things the rest of us can, with the appropriate support and ensuring that necessary CDC and local health guidelines are being followed.  We can’t let Covid erase the hard-fought gains of recent decades for people with disabilities – rights are rights.  And I say this even as a frightened mother.

Let DDS know where you stand –  And I hope you stand with me.

Friday, June 5, 2020

So Much to Take In

So much has happened since I last blogged on May 17.  The mayor’s phase 1 reopening on May 29 coincided with the national tsunami of reaction to the George Floyd murder, and now the country’s president is riding roughshod over lawful protesters and the District of Columbia.  It’s a time for coming together to combat racial injustice, and coming together as a D.C. community to demand our rights as American citizens.  All while we try to keep safe as covid continues to move among us.

It’s a lot.  And in the midst of it, I’d like us to remind ourselves (many will not need the reminder) that there are many people served by the Department on Disability Services and the Department of Behavioral Health who are people of color, and who therefore have dual risks in their dealings with law enforcement.  In recent days our local spotlight has been more on the misbehavior of federal authorities and not so much on the MPD, but this may be a timely moment for us to regroup as a community around the issue of police interactions at the local level.  The DD council, with Project ACTION!, is planning to facilitate a conversation among self-advocates along these lines as a starting point.

I really don’t know what else I want to say.  Like many of you, I’m a little in shock, a lot worried, and trying to think which way to turn. 

But since our world does continue to turn, and there is work to be done, I’d like to call attention to some upcoming deadlines that deserve your attention:

-          DCPS is soliciting feedback from families with school-age children about how to reopen schools in the fall, at this link, until 10 p.m. on June 8.

-          SchoolTalk and the DC Youth Leadership Network are currently recruiting DC youth with IEPs (ages 14-21) to apply for PAID Summer 2020 Virtual Work-Based Learning Experiences, with a deadline for applications of June 12.  Here is the application:

-          Comments can be submitted on DDS’ proposed new Individual and Family Services waiver until June 24, and on proposed amendments to the existing IDD waiver until June 25.  So far I only have these links: and, but maybe one of my DDS readers can provide the link with fuller details.

Stay safe, stay determined.

Sunday, May 17, 2020

We're Home but We Can Raise Our Voices: VOTE IN JUNE!

In the middle of this public health emergency, D.C. and Maryland will be holding primaries on June 2, and just a little later, on June 16, D.C. will hold a special election in Ward 2.  Voters are being encouraged to vote by mail – see for information on voting in D.C.  For those people who are receiving residential supports in D.C., I hope that provider agencies are getting the word to DSPs to provide direct assistance to people who want to vote.

Some additional materials that may be helpful:

-          This flyer from Disability Rights DC tells you everything you need to know about voting by mail or in person on June 2 (link is to my Google Drive and is safe):
-          Project ACTION! has also shared these documents:  DC request for absentee ballot ( and the DC voter registration form for those who have not yet registered:  For those voting in Maryland, Phyllis Holton has shared this: “Maryland is mailing out Absentee ballots to all registered Maryland residents…if you haven’t received one yet it should arrive this weekend.  If not,…I’ll try to help you get yours.”  You can reach Phyllis at
-          For those of you on Facebook, here are some nice resources from a new initiative, “We Vote Remote:” and

I just wrote about the fact that the disability community hasn’t been well represented in covid-19 handling and post-pandemic planning.  The best way to be heard is to VOTE!  So let’s do it!

Friday, May 15, 2020

Do People with Disabilities Fit into DC's Future?

DC disability advocates have been disappointed by the lack of representation on the mayor’s ReOpenDC advisory group (, which was to submit its report to her this week.  Based on information from DDS director Andy Reese during a focus group call last Saturday May 9, there were no clear plans to extend the advisory group beyond that time, and perhaps it’s just as well.  There wasn’t even representation by people with disabilities on the “Equity and Vulnerable Populations” committee, much less the other ReOpen committees addressing education, transportation and many other issues clearly affecting DC’s disabled residents.  In his regular community briefing today, however, Andy announced intentions to form a task force addressing concerns among the disability community about how to go about “reopening.”  This will be welcome, although it remains clear the mayor herself does not place a high priority on the concerns of our community.  We will need to use our time wisely to make our views heard clearly both now and when restrictions begin to be lifted on June 8 (

Budgets speak louder than words, in any case, and we will know on Monday how Mayor Bowser foresees dividing a pie that will be hundreds of thousands less than originally projected for fiscal year 2021.  It will be a busy week after that:
-          Tuesday, May 19, DC council hearings on the mayor’s budget, starting at 10:00 a.m.
-          Wednesday, May 20 at 2:00, a virtual briefing on the DDS budget (contact Charlisa Payne,
-          Friday, May 22, 9:00-3:00, community testimony on the DDS budget before the council’s human services committee (along with testimony on other departments the committee oversees)
-          Tuesday, May 26, 9:00, government testimony on the DDS budget (and other human services)

See the council calendar of hearings here:  To testify orally on May 22 (only the first 90 people to sign up will be accepted), contact the committee immediately (no later than Monday) at  They will let you know if you have a speaking slot or whether you will have to submit written testimony, which also will be part of the record.  Let the committee know that we won’t let our needs continue to be overlooked.

Wednesday, May 6, 2020

DRDC and Quality Trust: Protect People Supported by DDS and Those Who Support Them

Over a week ago I had intended to share two important letters that were sent to the Bowser administration, by Disability Rights DC (DRDC) and Quality Trust.  My mind is so full nowadays, as I know yours is, and the whole thing just slipped my mind.  So here, a little late, are the letters, along with responses from Deputy Mayor Turnage.  Please note that the request by both organizations for creation of a crisis team to prevent and preempt the large number of cases arising among people receiving residential care has not been taken up by the administration, although the infection continues to affect this community far more significantly than the population at large.

The full text of the letter from DRDC is here:
and the response from Deputy Mayor Turnage is here:

The full text of the letter from QT is here:
and the response from Deputy Mayor Turnage is here:

(All of the above links take you to my [safe] Google Drive folder.)

As mentioned in my most recent blog post, testing for people receiving supports from DDS and for DSPs in provider agencies looms large as an issue requiring priority attention.  Reacting case by case is not the same as having a plan.  Yes, we know test availability remains limited, but it’s clear the DDA waiver is a petri dish in which the virus is easily traveling from person to person, so if this is not the answer, what is?  People we love are getting sick and dying at rates far above general levels across the city.  When is this going to be treated as the crisis it surely is?

Sunday, May 3, 2020

Disability Advocates: Let Mayor Bowser Hear from You on Covid-19 Measures

The most recent mayor’s order pertaining to the covid-19 crisis,, extended the public health emergency through May 15 and provided specific guidance with respect to vulnerable populations, some of which applies to people supported by the Department on Disability Services under the IDD waiver.  This page on the DDS website collects pertinent government information in one location: The DC government is now giving greater attention to how the coronavirus crisis is affecting residents with disabilities, but serious concerns remain.

First, as of two days ago, 135 people out of the 2396 people served under the DDS waiver have tested positive for covid-19 – up from 86 people just a week before, and 8 times the rate of the D.C. population as a whole.  Of those 135 testing positive, 17 people, or 12.6%, had died – 9 of these in intermediate care facilities (nursing home-type settings), 4 in supported living, and the other 4 in a mixture of other settings.  A worrisome aspect of this situation is that these cases are not due to people’s leaving their homes, but rather to the virus being brought to them in their homes by the same DSPs and other direct caregivers who provide the services they need.  Until the last couple of weeks, little was being done to track these sorts of transmissions.  As of May 1 though, we know that 109 provider staff have tested positive, with 4 deaths.  Although there are regular temperature checks and self-reporting of any virus symptoms, there does not seem to be any plan for testing of staff or other emergency measures to bring down these frightening numbers.

Second, the mayor has launched a task force to plan for a gradual reopening of the city (, but people with disabilities are not well represented on its twelve subcommittees.  A coalition of advocacy groups is writing to the mayor to convince her to remedy this situation by adding persons with disabilities to some of the subcommittees.  Hopefully this will bear fruit.  In addition, all of us need to take advantage of these opportunities for input:

-          Specific feedback on the ReOpenDC initiative:, and

-          A longer survey about how the city should go about reopening:

I encourage you to answer both of these, today, in order to ensure the voices of people with disabilities and their supporters are clearly a part of the mayor’s forward planning.

Tuesday, April 21, 2020

How Covid-19 is affecting the D.C. Disability Community Now, and a Look toward the Future

As we move into Week 6 (if I’m counting right), I feel like we’re starting to move into a new realization of all the ways this “new normal” is affecting us.  I know I’m finding it harder to focus, with worry working its way into the crevices.  This is how I was feeling when I wrote to the Washington Post last week, right after the article by Theresa Vargas – here’s her article (  and my letter  As of last Friday, 49 people receiving supports from DDS had come down with covid-19 (a rate about six times that of the general D.C. population), and 8 had died.  Those numbers have increased since, and as a family member I am very concerned.  I wish that all the providers would – without violating any staff privacy – provide regular updates to families, as is being done in other parts of the country.  It wouldn’t change the facts, but such transparency would foster confidence and engender a stronger sense of community among those of us who are close to people receiving supports.

As you know, one way in which I’m trying to express my sense of community is by making, and encouraging others to make, fabric face coverings for our local direct support professionals (DSPs).  Even though people may have concerns about them (, the guidance is now clear that wearing a face covering can reduce the likelihood that a person not yet showing symptoms will infect people around them.  The mayor has issued a new order ( that they must be worn by everyone in groceries and most other public settings, and that DSPs and other home-care workers need to wear them as well.  If they’re required, then they should be available, but I’’ll keep sewing them until someone tells me the official order has shipped.  You can help - check the Quality Trust website for disability service providers who need homemade face masks:

I also want to share a couple of links to provide additional food for thought:

-          First, this video prepared by Bob Williams: reminds us how high the stakes are for people with disabilities in this pandemic period.

-          Second, this article about the future of the public library is sobering, since we all know how crucial libraries are for our community.

Finally, the DD Council will have its first public meeting of the year this Thursday, April 23, 3-5 p.m.  Please contact Alison Whyte ( for dial-in information.  Hope to see or hear you there.

Tuesday, April 14, 2020


I sent off 17 masks yesterday – hope you’re also working to make fabric masks for our disability support providers – the updated list is here:
Joan Christopher of the Georgetown University Center ( passed along a request from the University Center in Connecticut. (What’s a University Center of Excellence?  See my page on D.C. organizations, and also Drs. Mary Beth Bruder and Tara Lutz are conducting a survey entitled, “The knowledge, attitudes and behaviors of parents of children with disabilities in response to COVID-19,” which can be found at:

I followed up with them to confirm that there is no upper age limit on what they mean by “children” – i.e., this applies to parents of adult children as well.  They hope to get responses by the end of the month, so I’m turning my attention to this promptly and hope you will, too.  (Hopefully there are similar surveys being conducted by someone with respect to self-advocates’ own perspectives on covid-19, and maybe one for sibs as well?)

And while I’m on the subject of parents’ concerns at this time – here is an article that I had somehow missed in the Washington Post from several days ago:  This article hits home for me, since I haven’t seen my son in person since March 21 and his four-day-a-week volunteer job at a D.C. library has been on hold since March 16.  We worry daily for him and his loyal DSP staff.

I hope all of you are keeping well and busy.  As my son keeps telling me, “We’ll battle through this, Mom!”

Sunday, April 12, 2020

D.C. Disability Support Staff Keep Needing Masks…and other Important Information

I’m spending my Easter weekend making masks – but I can’t make enough all by myself, so I hope you’ll take time this Easter weekend/Passover season to make masks yourself, and send them along to one of the D.C. agencies whose direct support professionals are in need of a face covering.  This weekend I’ve made my masks from 100% cotton T-shirts, with a pouch (which already makes two layers) so a person can add a third layer – can be a paper towel or another layer of cloth:

And yes, I always wash the masks - in hot water - before sending!  The current, updated list of providers who need masks is here on the Quality Trust’s home page, here:

On another subject, Heidi Case, chair of D.C.’s Multimodal Accessibility Advisory Council (, has shared this information from the National Council on Independent Living and the Social Security Administration about who gets payments, and how, under the recent federal stimulus legislation:

And tonight, Heidi’s twice-a-week Disability/Senior Zoom group will be viewing “Crip Camp” ( together at 6:00 p.m.  If you’re interested in joining – tonight or another Sunday or Thursday - I’ll put you in touch with Heidi.

About ten days ago, Alison Whyte, Ricardo Thornton, and I (executive director, co-chair, and chair of the D.C. Developmental Disabilities Council - were interviewed over the phone by a journalist from Vox about how covid-19 is affecting people with disabilities.  Here’s the article:

Thursday, April 9, 2020


I mentioned earlier that Quality Trust will be keeping the list of D.C. providers ready to receive your homemade masks – the initial list is here:  Soon the list will be on QT’s website, and updated regularly.  But for now you can send your homemade face coverings to any of the providers on this list.  And while you’re on QT’s website, feel free to make a donation – QT is still doing its monitoring and advocacy throughout the crisis, so help them out too if you’re able.   


Since my blog post earlier this week ( about making face coverings for our D.C. provider agencies,  I’m thrilled to say that folks have really stepped up!  Tina Campanella, CEO of Quality Trust (, has polled the provider community, and  six D.C. provider agencies have said they will happily accept face masks for their DSPs and other caregiving staff.  Thank you, Quality Trust, and thank you to these providers.  Now keep watching this space for more specific information, and in the meantime start making masks.  Here is one of the easiest patterns I’ve found: – you can skip the science part and start watching at about minute #8 of the video.  The best part of this one is:  no excuses!  It doesn’t require any sewing.  I did find it was maybe a little hard to breathe through with three layers, though, and the goal is to keep the mask on, so in my view one layer with a paper towel pinned inside, or just the two layers of fabric, may be enough –  but experiment!  And remember – something is better than nothing, they don’t need to be perfect.  So START MAKING MASKS!  If I can do it, you can – and I promise there are folks right here in our home town of D.C. who are ready to receive them!

One more thing – I was on a call yesterday in which advocates were discussing what, if anything, we in the disability community can do about the fact that covid 19 is disproportionately affecting people of color, here and elsewhere -  Look folks – DSPs and other caregivers are disproportionately people of color – so this is something we can do.  START MAKING THOSE MASKS!