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.
Monday, August 3, 2020
Helping a Friend in a Time of Trial
Sunday, July 19, 2020
ROLLING BACK DISABILITY RIGHTS IN D.C.
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
WASHINGTON, DOUGLASS COMMONWEALTH: GET USED TO IT!
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!
BEFORE YOU READ THIS – READ MY BLOG POST, BELOW, FROM A FEW HOURS
AGO, AND TAKE ACTION.
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 And here: https://www.ddinwdc.com/search?q=statehood.
Keep reading, keep the comments coming, and again: Stay safe, stay determined.
EMERGENCY! READ THIS AND ACT!
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.
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 https://coronavirus.dc.gov/page/our-schools-0,
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: https://docs.google.com/forms/d/e/1FAIpQLScoaeO_uc9QA1OInF5Uvvv09MN9vCGM2KZD8KWVVmrnA2piNg/viewform.
- 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: https://www.dcregs.dc.gov/Common/NoticeDetail.aspx?NoticeId=N0093593 and https://www.dcregs.dc.gov/Common/NoticeDetail.aspx?NoticeId=N0093594), 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 https://www.dcboe.org/
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): https://drive.google.com/file/d/1Frw7NUO2POm_guQ9yl8PifGmROAuDXhN/view?usp=sharing
-
Project ACTION! has also shared these documents: DC request for absentee ballot (https://www.dcboe.org/Data-Resources-Forms/Forms-and-Resources/AbsenteeBallotRequestForm.aspx)
and the DC voter registration form for those who have not yet registered: https://dcboe.org/VoterRegistrationForm. 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 pholton@dcqualitytrust.org.
-
For those of you on Facebook, here are some nice
resources from a new initiative, “We Vote Remote:” https://www.facebook.com/VoteRemote/
and https://www.youtube.com/watch?v=EXbJh3DhaJU
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 (https://coronavirus.dc.gov/reopendc),
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 (https://coronavirus.dc.gov/release/mayor-bowser-extends-stay-home-order-and-public-health-emergency-through-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, Charlisa.Payne2@dc.gov)
-
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: https://dccouncil.us/events/. 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 humanservices@dccouncil.us. 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, https://dds.dc.gov/sites/default/files/dc/sites/dds/release_content/attachments/MayorsOrder2020.063.pdf,
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: https://dds.dc.gov/publication/dds-operating-status-during-covid-19-emergency.
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 (https://coronavirus.dc.gov/reopendc),
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: https://dcgov.seamlessdocs.com/f/ReOpenCommittees,
and
-
A longer survey about how the city should go
about reopening: https://dcgov.seamlessdocs.com/f/ReOpenDC
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.
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