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.

PEOPLE: MAKE MASKS. PROVIDERS: ACCEPT THEM.

I’m getting emails all the time about hospitals and other care-giving entities who are asking people to make homemade masks.  The only place I’m not hearing about that is among our local D.C. provider agencies under the DDS waiver.  But I know, from personal experience, that DSPs are not all having masks issued to them by their agency – and I for one am not happy about this.  If folks are waiting for N95s to magically appear, or expecting the D.C. government to issue masks, that really is not good enough.  We all know there isn’t enough personal protective equipment out there, so homemade masks are the only available backup.  It’s better than nothing, folks, and there’s really no reason whatever for our local provider agencies not to be asking, loudly and right now, for people to be making them.  All you have to do is let folks know who to send them to.  I’m talking with several others right now about this, and we will get a coordination point set up very shortly to collect this information from providers.  In the meantime, I’m making masks.  They won’t be perfect, but they may help protect my son and those around him, and that’s good enough for me.

IT'S APRIL, AND AUTISM ADVOCATES IN D.C. KEEP ON ORGANIZING

Over the weekend I received this important message:

Hello and hope you and your family are staying safe and healthy during these stressful times. As you know, April is Autism Awareness Month, and the “Light It Up Blue” initiative is designed to bring awareness to autism at this time. Since we will not be participating in activities outside the home, I would like to suggest we (each of us) put a blue light on our front or back porch to light up the nights in April to show our support for autism awareness in our community. 

If you have other ideas for things we can do in support of Autism Awareness Month, please let me know.

Thank you and please stay safe and healthy.

Ron Hampton

President

Autism Society of the District of Columbia

Ron, thanks so much for this initiative – I’m now scrounging around to find a blue bulb or other outdoor item in blue so I can go along with your idea.  Last year the DD Council (https://ddc.dc.gov/) had its first event marking this month, and I’m sad we won’t be able to have another in-person gathering this year.  But I’m thinking…If you have ideas, please add a comment below.

Autism Awareness/Acceptance Month also reminds us that the D.C. Department on Disability Services (https://dds.dc.gov/) continues to insist that legislation does not permit them to extend the IDD waiver (https://dds.dc.gov/service/services-people-idd) to people whose IQ exceeds the arbitrary cutoff of 69 or less.  Not everyone agrees with this, but even so, the Bowser administration has proposed legislation to change DDS authorities before, so what has prevented it from doing so to correct this inequity?  Sadly, just a lack of political will.  A period such as the one we’re living through, with people slipping through the safety net, serves as a reminder that it’s time to start preparing that legislation, now.

Light it up blue, folks – and remind Mayor Bowser you’re here.

UPDATE 6 - COVID-19 DISABILITY RESPONSE IN D.C.

For those of you with questions or concerns you’d like to pose to D.C.’s Department on Disability Services (responsible for administering transition services for D.C. students, employment (vocational rehabilitation) services, and Medicaid waiver services for people with an intellectual disability), I share the following message:

DDS invites self-advocates, community partners and stakeholders to participate in an hour-long WebEx discussion about the state of disability services during COVID-19. The conversation takes place Friday, March 27, at 10:30 am. This event will give community members greater insight into measures the agency is implementing to safely support people with disabilities during the public health emergency. Participants have the option of logging in or calling in (details below).  The chat-box will be open for comments and questions during the meeting for those who are able to participate through the WebEx platform.

    

I’m told that this meeting will occur every Friday until Friday, April 24, 2020 from 10:30 AM to 11:30 PM, Eastern Time.

        

Some other timely issues you should be aware of:

-          Message from Alert DC last night: STAY HOME. You have a critical role to play in stopping the spread of COVID-19 in DC. Effective at 10 p.m. tonight (Wednesday, March 25), the District of Columbia will close all non-essential businesses through Friday, April 24. We are depending on you - be a good neighbor.

-          D.C. residents at risk in covid-19 crisis:  https://www.washingtonpost.com/local/dc-politics/dc-could-get-severely-shortchanged-in-federal-coronavirus-stimulus-bill/2020/03/25/9ac364f4-6eca-11ea-aa80-c2470c6b2034_story.html.

-          https://www.modernhealthcare.com/medicaid/cms-withdraws-rule-crack-down-medicaid-eligibility

For the latest information on the District Government’s response to COVID-19 (Coronavirus), please visit coronavirus.dc.gov.

UPDATE 5 - COVID19 DISABILITY RESPONSE

Here is some of the information I’ve picked up from various organizations working to support people with disabilities at this time.  Let me know if you’d like more information:

-          The D.C. Developmental Disabilities Council (https://ddc.dc.gov/) has assembled a resource list (see https://drive.google.com/file/d/1DBEvPnvjTcKpnTwg8_7hI98yl0bls5N_/view) to help people, along with their families, direct support professionals, and other supporters to stay connected.  This will continue being updated, so please contact DDC executive director Alison Whyte (alison.whyte@dc.gov) with your ideas for additions to the list.  Also, yesterday the DDC shared this statement https://drive.google.com/file/d/1S_8SQJBa4QJtqkLfxNQYZDCyHEZBjpfK/view?usp=sharing

with DC government agencies and the DC council, to ensure that evolving plans take full account of people with developmental and other disabilities in our community. The DD Council also is sharing plain-language information about covid19 with organizations and individuals.

-          There has been considerable dialogue at both the national and local levels about the impact of distance learning on students with disabilities.  This fact sheet https://www2.ed.gov/about/offices/list/ocr/frontpage/faq/rr/policyguidance/Supple%20Fact%20Sheet%203.21.20%20FINAL.pdf is the most recent national guidance.  The Individuals with Disabilities Education Act (IDEA) is not waived.  Locally, there are initiatives by the DC government and community groups to ensure that students have access to devices needed for remote learning, although training students not already familiar with the technology is among the challenges.

-          At this moment, the D.C. Summer Youth Employment Program (https://does.dc.gov/service/marion-s-barry-summer-youth-employment-program-participant-information) is scheduled to go forward, with flexibilities in place for online applications.

-          For adults receiving residential supports from the Department on Disability Services, advocacy efforts are under way, led by the DC Coalition (http://dc-coalition.org/) to get the D.C. government to anticipate staffing shortages for in-home direct support professionals (DSPs) by:  1) boosting remote/technology based supports for people who may not need as much hands-on care; 2) designating DSPs as essential employees so that, in the case of a more stringent lockdown, they can get to their jobs; and 3) enabling hazard pay for DSPs – who are currently doing without any protective gear - in case they need to support someone who has tested positive (which has not yet occurred). Monitoring of homes continues, though remotely, by Quality Trust (https://www.dcqualitytrust.org/) staff.

-          Advocacy also is under way to try to ensure that therapists providing mental-health supports through the Department on Behavioral Health (DBH) can get paid for doing so remotely, and to get the home-delivered meals that the Department on Aging and Community Living (DACL) is providing seniors also to go to people with disabilities that DACL supports.  These are works in progress.

In this time of likely staff shortages and other dislocations, it is even more important for the D.C. government - Melissa Bird (melissa.bird@dc.gov) and Andy Reese (andrew.reese@dc.gov), please take note – to ensure that people with disabilities are not missed in the DC census.  Government guidance was not issued before the covid19 crisis, and still has not been.  For the moment it appears census responses are being handled residence by residence, which depends on overburdened individual staffers to get the cards filled out.  In current circumstances, more centralized methods of ensuring an accurate count are going to be needed if we want to ensure everyone is counted

Supporting, and heeding the voice of, people with disabilities must be an intentional and integral part of all planning by the DC government at this time.  Hoping for the best is not an option.   Write to coronavirus@dc.gov to share your concerns about inclusion of people with disabilities in the planning!