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 https://www.schooltalkdc.org/voices-of-change/# 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:  https://dds.dc.gov/event/family-support-council-public-meeting-thursday-september-17-2020.

-         -        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:  https://www.dcqualitytrust.org/virtualcookingparty/  AND

-        -         Next week, on Thursday, September 24, the D.C. Developmental Disabilities Council will hold its quarterly meeting – watch this space:  https://ddc.dc.gov/ 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 emily.ornstein@dc.gov. 

-          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 kirk.dobson@dc.gov 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 https://dds.dc.gov/node/1467506.

 -          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 rebecca.salon@dc.gov.

 -          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 alison.whyte@dc.gov.

 -          New school year. The new school year is upon us, and although it will start virtually, parents are scrambling to make preparations.  (See https://dcpsreopenstrong.com/.) Laura Lorenzen, the new DC liaison for MANSEF (see https://dcase.org/), 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 https://coronavirus.dc.gov/phasetwo.

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 https://johnlewislegacy.org/

Tuesday, August 4, 2020

The Mayor's Reopening Applies to People DDS Supports

In a blog post several weeks ago (https://www.ddinwdc.com/2020/07/rolling-back-disability-rights-in-dc.html), 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:  https://dds.dc.gov/node/1490546.  

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:  https://gf.me/u/ykudsb.  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:  https://dds.dc.gov/sites/default/files/dc/sites/dds/publication/attachments/DDS%20Phase%20Two%20Re-Opening%20Guidance_0.pdf.  Andy Reese, DDS director, has continued to state in the Friday community conversations (https://dds.dc.gov/node/1470236) 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 (https://dds.dc.gov/node/1467506), 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 https://coronavirus.dc.gov/, and Mayor’s Order 2020-063 (https://coronavirus.dc.gov/release/guidance-mayor%E2%80%99s-order-residents-and-businesses) 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 (andrew.reese@dc.gov).  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 - https://collinpeterson.house.gov/about-me/full-biography - 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 (https://www.washingtonpost.com/local/dc-politics/dc-statehood-vote/2020/06/25/c2ac1670-b6ee-11ea-a8da-693df3d7674a_story.html), 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  https://ddc.dc.gov/page/dd-council-meetings 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 https://drive.google.com/file/d/1mt-Sfn11xbICXs_7j-upvnCFZEzGtxYQ/view?usp=sharing and you can contact Rhonda White at rwhite@dcqualitytrust.org 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 astrange@dccouncil.us and let the committee know we can’t let this happen!

-          I wrote in my last blog post (https://www.ddinwdc.com/2020/06/so-much-to-take-in.html) 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:  https://dds.dc.gov/ifs-waiver.  Note that there will be a public forum on June 24 and that comments are due by July 13.

o   Waiver amendments:  https://dds.dc.gov/idd-waiver-amendment.  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: https://www.washingtonpost.com/local/dc-politics/dc-statehood-vote-june-26/2020/06/15/6ff29e00-af22-11ea-8758-bfd1d045525a_story.html

o   Here: https://www.washingtonpost.com/opinions/2020/06/14/muriel-bowser-protests-show-why-dc-statehood-matters/

o   And here: https://www.ddinwdc.com/search?q=statehood.

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 – andrew.reese@dc.gov.  And I hope you stand with me.