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!

UPDATE 4 - COVID 19 DISABILITY RESPONSE

In yesterday’s post I referred to a document on community resources that the D.C. Developmental Disabilities Council (DDC) was putting together.  As I said then, this is a work in progress but here it is in its current version:

https://drive.google.com/open?id=1DBEvPnvjTcKpnTwg8_7hI98yl0bls5N_

I also was reminded by people using assistive devices that information about covid-19 on the website of the Department on Disability Services in PDF format and so inaccessible to some.  Here are two of the key documents:

https://drive.google.com/open?id=1jbuldE7Yee1Vh-E0oIGzkdnNx9ycxZQQ

https://drive.google.com/file/d/1P1-ka3Yc4xQo-V29cri3Tm_43MzGrkki/view?usp=sharing

I’ve alerted DDS director Andy Reese and D.C.’s Office of the Chief Technology Officer (OCTO) to this problem, asking them to provide clickable links to important documents.  In the meantime, all I can do is put these in my Google Drive – I have good virus coverage so believe you can use these links safely.

All the best to each of you, as all of us do our best -

UPDATE 3 COVID 19 DISABILITY RESPONSE

I can’t be fully complete in this space because things are moving so quickly and on so many fronts.  I don’t even hear about all of them.  But a quick update about what I do know.

DDS has added resources to its website at https://dds.dc.gov/node/1467506, including a new “Message to Our Community” (item #2).  DDS is working with the federal Centers for Medicare and Medicaid Services to obtain more flexibility in Medicaid waiver services for the duration of the crisis, although from what I know so far this will not change the IQ-cutoff eligibility, which appears even more intolerable at a time like this. 

The DD Council (which I currently chair) is working on several fronts, including developing a list of resources which we hope will be made widely available to caregivers, DSPs and others on the “front line” to help reduce isolation and encourage activity while staying safe.  I will share the current version once it’s available, but it will continue being updated so please contact Alison Whyte (alison.whyte@dc.gov) with any ideas you have for additions.  The DD Council also is working on advocacy, including:

-          In the mayor’s regular calls with community leaders on COVID-19, working to promote outreach to people with disabilities and their families, including targeted mailings in light of the fact that, with libraries closed (now through April 27), many do not have access to computers.

-          Preparing a message for DC government agencies and the DC council reminding them that people with disabilities are among the DC residents they need to reach and to serve during this crisis – the responsibility for inclusion does not lie solely with DDS.

-          Working with DDS to ensure the IDD waiver includes the broadest possible flexibilities with respect to intake criteria, types of services, access to community/neighborhood services, and where and by whom services can be provided during this crisis – more important in light of near-certain staffing shortages to come.

-          Underscoring the fact that this crisis exposes the inadequacy of DC service availability for people with developmental disabilities and the need for prompt expansion of eligibility for DDS waiver services, with action by both the administration and the DC council.

The DD Council also is considering funding options and is making plans for the first of a series of coordination calls with community leaders this next week to ensure we are working as creatively and broadly as possible to address our community’s needs.

Heidi Case, whom some of you know as the former coordinator for Project ACTION!, is organizing a number of self-advocates and others to flag looming staff and supply shortages and keep people in touch.   I’ll share more information on this, but reach out to Heidi if you are interested.  (I avoid putting personal emails in my blog unless I’m asked to do it.)  If you are on Twitter, use hashtages #HighRiskCOVID19DC and #StayingAliveDC.  Heidi, I welcome a comment from you below if you would like to provide other specifics.

The latest update from the Bowser administration is at https://coronavirus.dc.gov/release/coronavirus-data-update-march-19.

UPDATE ON D.C. DDS RESPONSE TO COVID 19

On Friday I wrote about my concern that there wasn’t adequate information coming from DDS or the Bowser administration with respect to contingency planning about COVID 19.  On Saturday I called in for a remote townhall by the mayor’s office about general arrangements, but I was unable to ask my question about getting targeted information out to people with developmental disabilities.

Yesterday I heard from Andy Reese, director of the Department on Disability Services, who directed me to this link:  https://dds.dc.gov/publication/dds-operating-status-during-covid-19-emergency.  He tells me that there will be a letter coming out today for self-advocates and families – I hope that will be distributed widely, including hard copy where needed.  In the call on Saturday I learned there was to be a mailing to people served by the Office on Aging (or maybe to senior citizens generally, I was not sure).  This mailing also should go to those in the community receiving supports and services from DDS and DCOA under the IDD and EPD waivers, and I sincerely hope this message is being heard.

I’ll share information as I get it.  In the meantime, read this and distribute this information from the Centers for Disease Control (CDC) widely:  https://www.cdc.gov/coronavirus/2019-ncov/prepare/prevention.html?CDC_AA_refVal=https%3A%2F%2Fwww.cdc.gov%2Fcoronavirus%2F2019-ncov%2Fabout%2Fprevention.html

Please stay safe, and do your best to keep others around you safe as well, by practicing social distancing to the extent possible.

KEEPING UP TO DATE ON CORONAVIRUS - AND THE CENSUS!

As I hope you know, Mayor Bowser declared an emergency a couple of days ago with respect to the coronavirus.  This is the website for the latest, up to date information:  https://coronavirus.dc.gov/., and here is an announcement out today about D.C. government closures:  https://mayor.dc.gov/release/mayor-bowser-adjusts-district-columbia-government%E2%80%99s-operating-status.  Note that all libraries are going to be closed starting Monday until April 1. 

MUCH MORE needs to be done to keep the DC online information up to date in these unsettled days, though.  When I go on the DDS website, https://dds.dc.gov/, there’s a small ribbon across the top about coronavirus information, but nothing at all about what’s being done with respect to the population being served by DDS (or if it’s there, it’s buried too far down in the website).  I realize that DDS doesn’t control its own website, but the Office of the Chief Technology Officer (https://octo.dc.gov/page/district-agency-support) needs to put more effort behind this, and NOW.  (By the way, OCTO is also the agency we have to thank for the exceptionally messy and user-unfriendly Zixcorp mail system, but more on that another time.) 

The DDS website doesn’t even mention the event postponements that were announced yesterday in an email from Emily Ornstein (emily.ornstein@dc.gov) - including today’s DC Supporting Families Community of Practice, but hopefully the word got around.  The Voices of Change conference on March 26 also is postponed, and more to come.  The DD Council meeting scheduled for March 19, 3:00-5:00 is in the process of rescheduling, so stay tuned for that as well.

When the DD Council meeting goes forward, we expect to have someone there to talk about the census and how it’s rolling out in D.C. (https://dccensus2020.dc.gov/).  But as we all know, the census is already under way – cards arrived in the mail yesterday – and there needs to be specific information on the DDS website saying exactly how the people served are going to get counted – Address by address?  Provider by provider?  Some other way?  Tell us!  It’s not too soon!

Earlier this week, when we were all still in the mood for a party, many of us shared a great event, Quality Trust’s Better Together Reception (https://www.dcqualitytrust.org/better-together-reception-2020/).  You missed the event, but while you’re sitting home you can make a remote donation to this important organization that does so much for people with developmental disabilities in D.C. and beyond.  Here’s the link:  https://www.dcqualitytrust.org/support/donors/ (and yes, I serve on the QT board – because I know how important it is!

Stay safe, all of you – and let’s get some more information!

Judy Heumann Rocked the Place! (and more)

What a turnout it was at Politics and Prose for the reading and discussion by Judy Heumann (https://time.com/5793652/judith-heumann-100-women-of-the-year/)  of her new book, Being Heumann (https://www.politics-prose.com/book/9780807019290).   The place was packed, and all the books sold out, as she read passages from her book and held a dialogue with former government official and rights attorney John Wodatch about her many accomplishments, including the 504 Sit-in.  I saw several people I know there, and many other activists and allies who turned out for this great event.

Coming back down to earth, it’s Developmental Disabilities Awareness Month, and here are a few reminders about upcoming local events:

·       On March 11, it’s Quality Trust’s Better Together annual reception - https://www.dcqualitytrust.org/better-together-reception-2020/

·       On March 12, the Family Support Council’s bimonthly public meeting - https://dds.dc.gov/event/family-support-council-public-meeting-march-12-2020

·       On March 13, the Supporting Families Community of Practice meeting - https://dds.dc.gov/event/supporting-families-community-practice-march-13-2019

·       On March 19, the quarterly public meeting of your DD Council (https://ddc.dc.gov/)

·       On March 30, the big Developmental Disabilities Awareness Month celebration - https://dds.dc.gov/event/dds-developmental-disabilities-awareness-month-celebration, and

·       On March 31, DDS will brief on its proposed budget for 2021 - https://dds.dc.gov/event/dds-budget-forum-flyer

Surely you can make it to at least one of these!  If I’ve missed another local event, please leave a comment!*  And get ready for April, when the DD Council will host its second annual Autism Awareness and Acceptance Month event – watch this space!

* An earlier version of this post said there would be a Project ACTION! (https://www.dcqualitytrust.org/families/join-project-action/) meeting March 14, but I've since learned the March meeting has been cancelled – next ones are April 4 and May 16 – come, join and learn!

Disability at the DC Budget Engagement Forum Last NIght

We needed more disability advocates at the budget engagement forum with the mayor at UDC last night!  The folks who get the most attention are the ones who show up in matching T-shirts and spread out across all the tables.   

I know many of you had turned out for the February 18 forum on Franklin Street NE, and hopefully more of you will be at the final one tomorrow morning at the Kenilworth rec center (https://www.eventbrite.com/e/mayor-muriel-bowser-presents-the-2020-budget-engagement-forums-tickets-89658337501).  I saw Andy Reese, DDS director, and Alison Whyte, DD Council executive director, there, but it’s important to have a groundswell of determined advocates who can make a lot of noise!  I've heard there was an overflow room - maybe you were there and I missed you?*

I made my views known about funding the DSP bill (see more at http://dc-coalition.org/) and about expanding eligibility for DDS disability supports to people with autism and other developmental disabilities (https://www.ddinwdc.com/search?q=expansion), both at my table and in a direct conversation with the mayor as well.  I was pleased that our issues made it into my table’s priorities and I found new allies in colleagues who care about early childhood education and immigrant rights, but I would have liked to hear other tables reporting out more on disability-related issues as well.  I was tweeting furiously the hashtags #FundtheDSPWageAct (https://twitter.com/hashtag/FundtheDSPWageAct?src=hashtag_click) and #DDeligibilityDC (https://twitter.com/hashtag/DDeligibilityDC?src=hashtag_click), and I appreciate those of you who retweeted or liked my @DDinWDC tweets (https://twitter.com/DDinWDC).  Let’s keep the groundswell going!

*Thanks to Ian Paregol from the DC Coalition, who was apparently at a neighboring table, and also thanks to others who've let me know they were redirected to overflow!