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!”