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!

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.

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:

https://drive.google.com/file/d/1bjmrpR8OWZEvt_MiDNAf8a7asnxLoUCU/view?usp=sharing

and the response from Deputy Mayor Turnage is here:

https://drive.google.com/file/d/1_LzFgW7eNOlvQbp3TlnEXNBMVGGvr6KT/view?usp=sharing

The full text of the letter from QT is here:

https://drive.google.com/file/d/1OLAk3tz7Yi6Abdn8TCjg0rB8PUNgnglv/view?usp=sharing

and the response from Deputy Mayor Turnage is here:

https://drive.google.com/file/d/1WSoXkf1WtzxkApjuDevfKM2oaANf6QH7/view?usp=sharing

(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?

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.

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 (https://www.washingtonpost.com/local/a-health-care-worker-chose-to-quarantine-with-a-disabled-man-who-has-covid-19-for-that-he-gets-4-more-an-hour-and-has-to-reuse-masks-and-gowns/2020/04/15/2f1bb9d0-7f4c-11ea-9040-68981f488eed_story.html)  and my letter https://www.washingtonpost.com/opinions/a-time-of-hand-washing-and-hand-wringing/2020/04/19/798c8052-8010-11ea-84c2-0792d8591911_story.html.  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 (https://www.washingtonpost.com/national/coronavirus-masks-america/2020/04/18/bdb16bf2-7a85-11ea-a130-df573469f094_story.html), 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 (https://coronavirus.dc.gov/sites/default/files/dc/sites/coronavirus/publication/attachments/MayorsOrder2020.063.pdf) 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:  https://www.dcqualitytrust.org/.

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

-          First, this video prepared by Bob Williams: https://www.youtube.com/watch?v=oQFGCym-Rm0 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 https://www.publishersweekly.com/pw/by-topic/industry-news/libraries/article/83093-public-libraries-after-the-pandemic.html 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 (alison.whyte@dc.gov) for dial-in information.  Hope to see or hear you there.

MASKS AND MORE: ANOTHER COVID 19 D.C. DISABILITY UPDATE

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:  https://www.dcqualitytrust.org/dd-provider-organizations-in-dc-in-need-of-homemade-masks/.

Joan Christopher of the Georgetown University Center (https://ucedd.georgetown.edu/about.php) 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 https://www.aucd.org.) 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:

https://uconn.co1.qualtrics.com/jfe/form/SV_0v9k95dKr4vsQAd.

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:  https://www.washingtonpost.com/lifestyle/on-parenting/a-time-of-unprecedented-fear-for-parents-of-adults-with-intellectual-and-developmental-disabilities/2020/04/02/9c195416-7295-11ea-87da-77a8136c1a6d_story.html.  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!”

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:  https://www.dcqualitytrust.org/.

On another subject, Heidi Case, chair of D.C.’s Multimodal Accessibility Advisory Council (https://twitter.com/accessibledc), 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:

https://advocacymonitor.com/eip/

https://www.ssa.gov/news/press/releases/2020/#4-2020-1

And tonight, Heidi’s twice-a-week Disability/Senior Zoom group will be viewing “Crip Camp” (https://www.forbes.com/sites/andrewpulrang/2020/04/08/netflixs-crip-camp-is-for-everyone/#4d502ad77312) 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 - https://ddc.dc.gov/) were interviewed over the phone by a journalist from Vox about how covid-19 is affecting people with disabilities.  Here’s the article:  https://www.vox.com/2020/4/6/21200257/disabilities-coronavirus-group-homes-isolation-policy.

D.C. PROVIDER AGENCIES ACCEPTING HOMEMADE MASKS

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:  https://drive.google.com/open?id=10wQ7voE8JOUN6DyNlhylIn3BISYVQOvy.  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.   

WE'RE MAKING MASKS FOR D.C.'S DIRECT SUPPORT PROFESSIONALS

Since my blog post earlier this week (https://www.ddinwdc.com/2020/04/people-make-masks-providers-accept-them.html) 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 (https://www.dcqualitytrust.org/), 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: 

https://www.youtube.com/watch?v=hVEVve-3QeM – 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 - https://www.washingtonpost.com/local/outcry-over-racial-data-grows-as-virus-slams-black-americans/2020/04/08/52cfb514-79f9-11ea-a311-adb1344719a9_story.html.  Look folks – DSPs and other caregivers are disproportionately people of color – so this is something we can do.  START MAKING THOSE MASKS!

Bob Keeps the Advocacy Energy Coming

There is tremendous energy in our advocacy community, and one person who has shown consistent leadership is Bob Williams, former deputy commissioner in the HHS Administration for Community Living, among other important roles.  Bob recently led the charge on an advocacy letter sent to the mayor and others, including the Georgetown University Center and Project ACTION!   Bob now blogs on a site called “In a Struggling Voice,” and his latest blog post includes a link to the letter, here:

https://inastrugglingvoice.blogspot.com/2020/04/why-we-cant-wait-5-steps-dc-must-take.html.

Keep lifting those voices, struggling or not, and we will be heard.  I hope everyone is keeping safe.