Monday, June 14, 2021

The Train is Moving Toward #DDequityDC!

I have not been faithful in writing my blog lately, but I promise I’ve been hard at work!  Many of us have been meeting and preparing over recent weeks to testify, and help others do the same, in hearings on the Department on Disability Services (DDS) and Department on Health Care Finance (DHCF) that took place in the DC council on June 7.

Just before those hearings, our friend, Councilmember Brianne Nadeau, with 7 of her fellow councilmembers as co-sponsors (Charles Allen, Anita Bonds, Mary Cheh, Janeese Lewis-George, Elissa Silverman, Robert White, Trayon White), introduced Bill 24-0268, the “Developmental Disability Eligibility Reform Amendment Act” (https://lims.dccouncil.us/Legislation/B24-0268).  When it passes, this bill will revise the eligibility requirements for supports from DDS’s Developmental Disabilities Administration so that people with an IQ of 70 or above who have significant support needs may be able to qualify for essential long-term services.  This would be a game-changer in DC, since we are one among only a handful of states that still provide services only for those with an intellectual disability.  Those with autism, cerebral palsy, and many other lesser-known developmental disabilities can get access only to short-term employment supports from DDS’ Rehabilitation Services Administration (RSA). 

We aim to change that, and so we ensured that advocates and families that would be affected by the change turned out in meaningful numbers at both hearings.  These were budget hearings and the eligibility change would not have a budget effect since there are many empty slots for both the DDA IDD waiver and the new IFS waiver – but we wanted to take the opportunity of these budget hearings to make our views clear!

Why did we appear at both hearings, and not only the DDS hearing?  Well, two reasons.  One is that Councilmember Nadeau was chairing the DDS hearing, and has shown she is supportive, so she didn’t need as strong a reminder.  However, for some reason Councilmember Vince Gray, who was chairing the DHCF hearing and has been a longtime supporter of disability rights in DC, did not co-sponsor the bill, and we wanted to let him know the disability community is united behind this initiative.  (He did seem to hear us, and asked us to get a copy of the bill to his staff for his review.)  The other reason is that DHCF is the agency overseeing every aspect of Medicaid in DC, and DDS can’t move a muscle on Medicaid waivers – the main vehicle for DDA supports – without DHCF collaboration.  So Wayne Turnage, the deputy mayor who also heads DHCF, also needs to hear that this eligibility change is a priority for the advocacy community.

Hearings on B24-0268 itself will not take place until the fall, and we need to be ready to turn out again then!  Fall may seem far away, but it isn’t, and we can’t afford to take the pressure off.  Do anything you can, now, either to thank your councilmember for co-sponsoring (see list above, and remember that at-large members represent us all!) or to encourage your councilmember to support the bill if s/he did not co-sponsor (Pinto, Gray, Henderson, McDuffie, Mendelson did not cosponsor).  And either way, tell them how important this bill is, and why!  See https://drive.google.com/drive/folders/15by34b3zrlHYgAipdgUeTPB6oOna7exr for some tools that can help, and note that there’s a team of folks ready to assist!

Finally, if you’re active on Twitter, make sure to use the hashtags #DDequityDC and #NotJustIQ, and feel free to tag me at @DDinWDC so I can retweet you!

Friday, April 16, 2021

The Moment is NOW to Achieve Equity in D.C. Disability Supports

Developmental Disability Awareness Month is over, but our efforts to make the system of supports for adults with developmental disabilities in D.C. more equitable continues!  I last wrote about this after February’s DDS performance review hearing (https://www.ddinwdc.com/2021/02/you-had-real-impact-at-thursdays-dds.html), and as a result of the extraordinary turnout and advocacy that day, things are moving in the right direction – but we must keep the heat on!  Councilmember Nadeau, who chairs the D.C. council’s human services committee, is fully on board to ensure DDS has the authority to extend long-term waiver services to people with an array of developmental disabilities who have substantial support needs.  Right now, essentially only those who tested at an IQ score of 69 or below before the age of 18 are eligible for adult supports in D.C., and DDS argues that it cannot change the criteria without legislative action.  So we’re going to make sure that legislative change happens!

Now is the time.  Why?  Because there are plenty of waiver slots available under the IDD waiver, due partly to normal annual increases and – sadly – due to the 55 deaths that have occurred among people supported by DDA (the arm of DDS that administers the IDD waiver) since the start of the pandemic.  And there also are 30 additional slots under the new IFS waiver (which has the same eligibility requirements but is geared toward people who do not need residential supports). 

Also – and we could not have known this a year ago when we began ramping up this effort again – in the American Rescue Plan bill the federal government has made up the more than $700 million in funding that had been withheld from D.C. under the Trump administration’s CARES act.  There are additional Medicaid federal matching funds to be made available as well (although there are conditions for their use).  The need for decisions about how this infusion of new funding will be used, is the reason why the mayor’s fiscal-year 2022 budget submission is being delayed until May 27.

But it is far from certain that Mayor Bowser is going to go along with this effort.  And this is where you come inThe job isn’t over yet, and we need to get this over the goalposts.  Take a look at our Call to Action - https://drive.google.com/file/d/15nZjt15vC1DQH76zcyKKqvRi6qa5LOZj/view - to see what you need to do!  Reach out to Alison Whyte (alison.whyte@dc.gov), executive director of the D.C. Developmental Disabilities Council, and let her know that you want to be a part of this effort! (For background on the DD council, see https://www.ddinwdc.com/p/blog-page.html.)  Write a letter, sooner rather than later, but for sure before the end of May, and plan to testify at the DDS budget hearing, probably in the first week of June.  

My son began receiving adult supports in D.C. seven years ago.  But ever since, I’ve been haunted by the “what if?”  I know there are folks out there who are affected by the very restrictive terms of eligibility for adult supports in D.C. – either folks reading this, or if not you, then someone you know.  This is our chance, people – our chance to get a fair system in place for adults with disabilities in D.C.  Take action now – and spread the word to others.  Step up and be heard, so we can win this moment.

Thursday, March 18, 2021

DC DD Council Meeting TODAY and DD Awareness Month Continues!

I'll be brief!  

Today is the DD Council's quarterly public meeting - BE THERE to hear about the DDC's advocacy agenda for 2021 and the 2022-2026 state plan!  https://ddc.dc.gov/page/dd-council-meetings

And DD Awareness Month online events continue, with: OSSE and DDS on Friday, March 19; Project ACTION! this Saturday, March 20; Players Unlimited and others on Wednesday, March 24; and the final big event on Wednesday, March 31!  All the details are here:  https://ddc.dc.gov/page/developmental-disabilities-awareness-month-2021  

And STAY TUNED for more informative and enjoyable events next month for Autism Acceptance Month - watch this space!

Wednesday, March 3, 2021

"Crip Camp" and More!

 

The coming weeks will bring some welcome entertainment –

The D.C. DD council, along with other partners, will be sponsoring a whole series of events over the course of March for DD Awareness Month (DDAM).  The first one is a movie night, Friday, March 5 at 7:00 p.m. – a screening of the film, “Crip Camp” (https://cripcamp.com/), featuring renowned activist Judy Heumann and produced by the Obamas!  Register here:  https://zoom.us/webinar/register/WN_GE0_wSkjTmWVYzUaH-tbQQ.  The full calendar of DDAM events will be coming out soon, watch this space:  https://ddc.dc.gov/page/developmental-disabilities-awareness-month-2021.

Thursday of next week, March 11 from 5:30 to 7:30 p.m., Quality Trust (https://www.dcqualitytrust.org/our-work/) will host its annual Better Together reception, virtual this year and with a twist:  This year will be a Paint & Sip extravaganza!  So get your tickets here: https://qualitytrustforindividualswithdisabilities.networkforgood.com/events/26928-2021-better-together-reception, and prepare to create a masterpiece!

Starting Monday, March 8, Special Olympics DC will hold a special fitness class via Zoom on Mondays, 3;00-3:30, and Fridays 10:30-11:00, all the way through March and April – see https://tinyurl.com/5d3rucky for more information and the Zoom link.  This is a great way to get ready for the spring!

We all need some enjoyment – even if it’s still virtual – so make time for one (or all!) of these!

Sunday, February 21, 2021

You had a Real Impact at Thursday's DDS Performance Review!

Look over to the right at “Pages,” D.C. Disability-Related Organizations and Terminology,” if you need help with any of the terms I use here.

On his regular Friday community call on February 19, DDS director Andy Reese was asked to give his reactions about the DDS performance review hearing for DDS that had taken place Thursday before the DC council’s committee on human services.  The first thing he mentioned was the strong turnout among witnesses in favor of revising eligibility criteria for the IDD waiver managed by the DDS Developmental Disabilities Administration.  In reality, the IDD waiver is only an “ID” waiver, since it serves only people who can demonstrate an intellectual disability with an IQ score of 69 or below before the age of 18, and as you know, advocates had put a lot of effort into getting people to show up and testify that this must change – and folks, we were heard!   (The hearing, start to finish, can be found at http://dc.granicus.com/MediaPlayer.php?view_id=2&clip_id=6127, beginning with the public testimony and continuing with Andy’s.)  Both committee chair Brianne Nadeau (Ward 1) and new councilmember Janeese Lewis-George (Ward 4) asked good questions after Andy’s testimony that showed they had been really listening!  Their questions about DD eligibility start about 4 hours 15 minutes into the hearing and run for about 15 minutes.  In responding, Andy made it clear there are very active discussions going on between DDS and the mayor’s office on the issue of revised eligibility – another sign that we are finally being heard on this issue.  Meantime, Nadeau’s staff is proceeding with work on draft legislation to move things forward, in collaboration with advocates and – we hope – the administration.

This was not the only topic addressed at the hearing, of course, and Nadeau made an important announcement very early in the hearing, namely that people with intellectual and developmental disabilities will become eligible for the Covid vaccine beginning March 1, along with others in Phase 1C Tier 1 (age 16-64 with qualifying medical conditions).  More on that here, pp. 9-10: https://mayor.dc.gov/sites/default/files/dc/sites/coronavirus/page_content/attachments/Situational-Update-Presentation_02-18-21.pdf.  We’ve been hoping and lobbying for this eligibility for some time, so this was tremendous news – now, though, the question is how DC Health and DDS will arrange for those shots to be delivered to remaining people supported under the IDD waiver.  (About 85% of people served by DDA in intermediate care facilities and residential habilitation have already received their first shots at specially arranged vaccination clinics.)  And for those supported by the EPD waiver, or those not receiving any Medicaid waiver services at all – well, they will no doubt be waiting at the DC Health portal along with anyone else in this very broad group of newly eligible people.  So we’re still some distance from our destination, but at least the horizon is within view.

Another topic which received a lot of attention Thursday, and some further follow-up on the DDS call Friday, was the way in which the pandemic has shone a light on the need for people to have access to technology, and training on how to use it.  DDS’ Technology First workgroup, first convened before the pandemic, just met at the end of January for the first time since Covid struck and will be starting to focus on monitoring people’s access and facilitating the learning process – welcome news, but something that also will continue receiving significant attention from advocates.

Direct support professionals were not forgotten, and many witnesses pointed out the need for the administration to fully fund the DSP Payment Rate Act of 2019, passed by the council in FY 2020 but only partially funded so far.  Given the enormous additional burdens taken on by the DSP workforce over the past year – 10 having died from COVID-19 – this seems the least we can do for those who help the ones we love.  The limitations of employment services provided by DDS through the Rehabilitation Services Administration (RSA), particularly the short-term nature of those supports, also received a significant amount of attention, in testimony and also in the Q and A.

And to close on a positive note, many of those testifying, myself included, gave DDS high marks for the transparency and leadership it has shown throughout the pandemic, particularly through the Friday community calls and the “Assuring Rights during COVID-19” training.  Andy and his team have done a great deal to keep people informed and working constructively together from the earliest days of COVID-19 in DC, now nearly a year ago, and for that they received recognition on Thursday.

Saturday, February 13, 2021

A Sad Passing, an Opportunity to Give

Many of you may already be aware that Tina Campanella, CEO of Quality Trust (https://www.dcqualitytrust.org/), lost her beloved husband, Elton Hensley, earlier this month.  It was a sudden passing and not covid-related.  A lovely video tribute can be found on Tina’s Facebook page:  https://www.facebook.com/tina.campanella.14.

Those of us who have benefited from Quality Trust’s help over the years – which is all of you reading this if you live in D.C., and many others of you in the suburbs and around the country – grieve along with Tina.  (Full disclosure:  I have served on QT’s board since 2014.)  Nothing can make this loss less intense for Tina, but she asks that people show their caring by making donations in his memory to Quality Trust:  https://qualitytrustforindividualswithdisabilities.networkforgood.com/projects/56284-general-donations.  In Tina’s own words: “[Elton] was a devoted partner and avid supporter of me and Quality Trust.  Elton was very involved in helping with Quality Trust through the years in many ways.  In the beginning, it was Elton who created our first logo and website, made business cards and assisted me with anything I needed.  He was a positive presence at most all our events and became an important member of the Quality Trust community.”

Amen.  Respect Elton’s memory with a generous donation to Quality Trust, today.

Monday, February 8, 2021

A Fair System of Supports in DC - Help Make It Happen!

As always, please refer to my page over to the right, “D.C. Disability-related Organizations and Terminology” if you’re confused about any of the terms I use in this blog post.

A few weeks ago (“This Week, Help Us Build a Better System of Supports in DC,” https://www.ddinwdc.com/2021/01/this-week-help-us-build-better-system.html), I invited readers – families of children still in the DC school system, as well as families and self-advocates who have applied but been turned down for services under DC’s IDD waiver – to participate in one of the community forums to educate people about current limitations on eligibility for that program and to learn about upcoming opportunities to help make a change! 

If you missed those sessions, it is not too late!  We need people to turn out for upcoming hearings before the Committee on Human Services of the D.C. Council and testify (virtually) like your future depends on it, at one of the following:

DC Council Committee on Human Services Performance Oversight Hearing for DDS, February 18 12:00-6:00pm. https://dccouncil.us/wp-content/uploads/2021/01/Performance-Oversight-Schedule-DRAFT-1.18.21.pdf 

DC Council Committee on Human Services Budget Hearing for DDS, April 27, 2021 9:00-12:00noon https://dccouncil.us/wp-content/uploads/2021/01/FY22-Budget-Schedule-DRAFT-1.18.21.pdf

All the details about how to sign up, or other alternatives for making your voice heard now, can be found here:  https://drive.google.com/file/d/1fEsjwuJA5Kx0-bGUCjWYg9nwx2Tpc-1U/view?usp=sharing.  There’s even more information at this link:  https://drive.google.com/drive/folders/15by34b3zrlHYgAipdgUeTPB6oOna7exr, and you can get more advice or help by contacting one of the advocates listed in the Call to Action.

All of this is tied to the efforts I discussed back in November (“Positive Developments in this Challenging Year,” https://www.ddinwdc.com/2020/11/positive-developments-in-this.html), with Councilmember Nadeau, who chairs the Committee on Human Services, taking a direct interest in getting legislation before the Council to correct this longstanding inequity.  That legislation is being drafted now, but it’s going to take your advocacy to bring the mayor and other council members along.  They need to hear from you! 

Sign up to testify!  Write to the Council!  Do it now!

Monday, January 18, 2021

Not OK: Vaccines for Healthy 65+ While Our Family Members Go Without

 As always, please refer to my page over to the right, “D.C. Disability-related Organizations and Terminology” if you’re confused about any of the terms I use in this blog post.

First, the good news:  The staff working for agencies that provide supports under the DC IDD waiver are now eligible to get the covid vaccine.  However, if any of you have been on the community calls that DDS director Andy Reese hosts on Fridays (contact Charlisa Payne at Charlisa.Payne2@dc.gov to sign up for notifications), then you know I have not been happy about the DC Health decision to make covid vaccines available to all DC residents 65 and older before most people below 65 who get support under the IDD waiver become eligible.  In DC, only waiver recipients in intermediate care facilities (ICFs) or residential habilitation (group homes, also known as community residence facilities, or CRFs) are currently eligible for the vaccine in DC.  I do know that people over 65 (a category I belong to) tend, as a broad group, to experience more serious symptoms than younger people – but many jurisdictions, including Maryland, are focusing on 75+ initially, in recognition that there are a great many healthy people in the 65-74 age group who are also able to shelter safely from the virus.  

So people 64 or under who are getting support under the IDD waiver are still waiting to be considered for the vaccine and will have to demonstrate they have underlying health conditions making them “high risk” (with no decision having been made yet about what documentation will be needed to show this is the case). On January 8, Andy Reese reported a “huge” increase (32) in December of covid cases among those in “supported living” residential settings, and on January 15 he announced another 9 cases in supported living so far in January.  As a point of comparison, so far during the pandemic, as of January 15, 111 people, or 37%, of DC residents in ICFs had tested positive, and 166 people, or 17.8%, had tested positive in supported living – but supported living is the fastest-growing group, while cases in the ICF group are slowing down and those people are already vaccine-eligible.

DDS reported on January 15 that among people getting IDD supports, just under 400 people in ICFs or group homes are now eligible for the vaccine, along with another 200 people 65 or over.  Doing basic math, this suggests that about 600 people, out of a total of 2400 people getting waiver supports, already have access to the vaccine.  That leaves 1800 or so under the waiver, about half of whom are in supported living and others in their own, so-called “natural home”  (a term I dislike) or a handful of other residential settings. 

Rather than requiring laborious documentation to prove underlying health conditions, these remaining people under the IDD waiver need to be moved up in the queue, immediately.  Given their living situations and what the numbers now show (a full 15% of people under the IDD waiver have tested positive), they are already “high-risk” and need to be considered that way.  I have reached out to DC Health (in my role as chair of the DC DD council – see https://ddc.dc.gov/page/about-ddc), and so far I have not gotten a satisfying response.  We need to keep the pressure on until it happens - for the time being, let Andy Reese know how you feel - andrew.reese@dc.gov, today.

Sunday, January 17, 2021

This Week, Help Us Build a Better System of Supports in D.C.!

When I first began this blog back in 2014, I felt I was all alone in confronting problems I saw in the support system for my son and others like him.  In the years since, I’ve discovered many other individuals and organizations who were in the fight before I was, and who continue to try to advance disability rights in D.C. and ensure that supports reach those most in need of them.

Even with two extremely important holidays on the calendar, this coming week is going to bring several opportunities for you to expand your knowledge about how the D.C. system of disability supports works now, and how you can help us make further progress in both the near and longer term:

·       On Tuesday, January 19 at 10:00, there will be another session in the series I mentioned in my last blog post, on “Assuring Rights During Covid-19.”  This presentation, on which I’m co-presenter, clarifies the rights that people who are getting supports under the DDS-administered IDD waiver have, even during a pandemic like the one we’re experiencing. You can find more at https://drive.google.com/file/d/1bR8EUxD_CrFs5C4fmj56fGD4u9xWmxFI/view?usp=sharing.  To sign up, contact Emily Ornstein (emily.ornstein@dc.gov).

·       On Thursday, January 21, at 10:00 and at 1:00, the Developmental Disabilities Council (https://ddc.dc.gov/page/about-ddc) will hold two more community forums to get your input on where the DDC should focus its efforts during the 2022-2026 state plan.  As a reminder, the DD council is federally mandated and federally funded, and exists ”to strengthen the voice of people with developmental disabilities and their families in DC in support of greater independence, inclusion, empowerment and the pursuit of life as they choose.”  Here’s all the information, along with how to register:  https://drive.google.com/file/d/1p6Zkht2AsAbyiS30v2klj5J3DT98Dv1o/view?usp=sharing.

·       Also on Thursday, January 21, at 7:00 p.m. (and again on Wednesday, January 27 at 1:00 p.m.) families with children still in the school system, as well as others who may be interested, can join a community forum focused on the limitations on eligibility for the current D.C. system of supports for adults with developmental disabilities, and the work that’s being done to build a more equitable system.  Find further information and how to register at: https://drive.google.com/file/d/1hfU2ACv07RUUETPSIBDHEWXGK8WODUfI/view?usp=sharing

All of these sessions are well worth your effort, but we know your time is limited.  Reach out to organizers even if you’re unable to attend, since there will be further opportunities to learn and get involved on all three of these important topics.  I’ll look forward to seeing you there -

Thursday, January 7, 2021

Family Sessions on the Rights of People Receiving Supports During the Pandemic

Given the events downtown yesterday, it seems strange to say Happy New Year, but I will say to you that I hope your 2021 has gotten off to a smooth start at the personal level.  Heaven knows the same is not true for our country, but hopefully that will change soon.  We can at least be happy about the news from Georgia.

Now, business.  I’ve written here before about the work done in the summer and fall to develop a presentation for provider staff on the rights of people being supported through the D.C. DDS waiver during the pandemic.  Recently I’ve been working with Emily Ornstein at DDS to adapt that presentation for parents and other family members.  The presentation is now ready, and the first sessions on “Assuring Rights During Covid-19” will be offered next week:

-          Monday, January 11 at 10:00 and 

-          Friday, January 15 at 10:00

If you have had issues with your family member’s provider agency, or you just have questions about what your role is in supporting those you care for to make well-informed decisions during the pandemic, you will want to attend one of these or other upcoming sessions.

To sign up, contact Emily Ornstein (emily.ornstein@dc.gov), today!  You can find more details here:  https://drive.google.com/file/d/1bR8EUxD_CrFs5C4fmj56fGD4u9xWmxFI/view?usp=sharing.