Tuesday, October 12, 2021

DC RESIDENTS: TESTIFY ON OCTOBER 21! WE NEED #DDEquityDC!

 

DC RESIDENTS:  COME TOMORROW!  TESTIFY ON OCTOBER 21!

My Maryland readers will find it hard to believe that in DC, autistic adults who do not have a low IQ can’t qualify for long-term supports.  Neither can anyone with any other developmental disability – unless they have an IQ score of 69 or below before the age of 18.

It’s true!  And in all of DC, with our population of 700,000 residents, less than 2400 people receive long-term disability supports.  The DC government wants to congratulate itself that we have no waitlist, but when you define eligibility so narrowly, you’re leaving plenty of folks with significant needs outside the front door.  Not to mention that there are many unfilled waiver slots, even though people continue to apply for services and get turned away. This can’t go on.

Over the past year, advocates in DC have made a renewed effort to remedy this clear injustice, working with Ward 1 councilmember Brianne Nadeau, chair of the Committee on Human Services, to bring legislation forward for a vote in the DC council.  In May, Nadeau and seven of her colleagues on the council introduced the Developmental Disability Reform Amendment Act of 2021 (B24-0268, (https://lims.dccouncil.us/Legislation/B24-0268), and on October 21 there will be a public hearing to consider the bill.

WE NEED ALL THE VOICES WE CAN GET AT THIS (VIRTUAL) HEARING!  This is how you can sign up:

Complete the witness form at https://www.brianneknadeau.com/testify or call the Committee on Human Services at 202-724-8170, by close of business on Monday, October 18, 2021.

And this is how you can learn more and get help with your testimony:  Attend this community meeting tomorrow, Wednesday, October 13, from 5:30 to 6:30 p.m.:

https://us06web.zoom.us/j/87383121935?pwd=VlREcEliZk9Xd215RTdpQkNLdXExdz09 (or Phone: 301-715-8592, Meeting ID: 873 8312 1935, Passcode: 165819). 

Help will be available, on October 13 and all the way until October 21, to prepare your testimony if you need assistance.  But Remember!  Personal stories are strongest!  What the DC council needs is to hear that there are many, many of us who want bill B24-0268 to be passed as it was introduced, not with changes that the mayor’s office may want in order to water it down or turn away those in need!

COME TOMORROW!   TESTIFY OCTOBER 21!    IT’S TIME FOR US TO WIN THIS ONE!

Sunday, September 19, 2021

Covid Vaccination and More

We’re headed into another fall with covid-19 calling the shots, although luckily we have important tools available to protect us from its worst effects.  After the mayor’s order in early August (see https://coronavirus.dc.gov/sites/default/files/dc/sites/mayormb/release_content/attachments/COVID-Situational-Update-Presentation_08-16-21.pdf) had already called for vaccination of DSPs in licensed facilities (Intermediate Care Facilities, or ICFs, and group homes, also known as “reshabs”), an emergency mandate signed by DC Health director LaQuandra Nesbitt will now require anyone providing services under one of the DDS HCBS waivers (IDD or IFS) to get at least one vaccination for covid-19 by September 30.  This means that all DSPs, in whatever setting, must get vaccinated or meet the terms for a valid exemption (see https://doh.force.com/ver/s/vaccinereporting).  This is important news, since people getting DDA supports should not have to be concerned that their staff will bring the disease into their home, and since covid-19 cases among those supported by DDA have begun to tick up in recent weeks (https://dds.dc.gov/node/1558351).  You saw my last blog post (https://www.ddinwdc.com/2021/08/people-supported-need-their-staff-to-be.html), so you know I’m happy about this news.

However, it was far less welcome news to learn on DDS’s September 17 community call (that recording should soon be posted to the same link immediately above) that DC Health expects people supported by DDA who are fully vaccinated but exposed by someone else to remain in quarantine for 14 days, even if they text negative for the virus.  This is a different standard than that applied to the DC population at large, and let’s look at what it could mean:  If a person, fully vaccinated, has returned to a job, and through no fault of their own, is exposed to covid-19 on the job, in transit, or at home, that person has to stay home, even if they test negative and show no symptoms.  How is their employer supposed to treat such non-sick leave?  What if it happens more than once? What if they haven’t accumulated enough leave to be off the job for a full two weeks?  The employer may lay them off.  This runs counter to competitive employment, and counter to community integration of any kind, for people with disabilities: requiring a person to remain enclosed at home when they are fully vaccinated and have had a clear covid test after exposure is an utterly absurd and inappropriate policy.  This came up toward the end of last Friday’s call, so next Friday I intend to continue pushing DC Health to change this policy, and I hope some of you will dial in and support me.  Contact Charlisa Payne, Charlisa.Payne2@dc.gov, to get the Webex link for DDS community calls, Fridays noon to 1:00 p.m.)

On a different topic, DDS has issued its final policy for contribution to the costs of care for people receiving residential supports from DDS: https://bit.ly/2XA1yII (link takes you to the DDS.DC.GOV website).  Those who’ve been reading my blog for a while will remember that I wrote about this quite a bit when DDS was holding discussions back in 2018-19.  (See https://www.ddinwdc.com/search?q=contribution+to+).  While the contribution to costs of care is already being collected for many people, it will be rolled out for others beginning with their next ISP meeting.  In essence, it means that anyone whose income comes entirely from public benefits such as SSI, SSDI or other will have to (continue to) turn over all but $100 to DDS to help cover the costs of their residential supports.  Those who are working will be able to keep their earnings as long as their public benefits are not reduced.  There will be a great deal of complexity as this policy begins to be put in place, and there are provisions for appeal.

As there is news about the Developmental Disability Eligibility Reform Amendment Act (https://lims.dccouncil.us/Legislation/B24-0268), I’ll write about it here.  The DC council remains in recess and there is no date set for the hearing as yet:  stay tuned, you’ll be needed once it is scheduled!

Saturday, August 7, 2021

People Supported need their Staff to be Vaccinated Too!

 I hope all my readers are doing well in this confusing summer.  It feels as though we were just preparing to launch back into normal life when we found the delta variant chasing along behind us.  Still, it’s been heartening to hear, on each of the recent DDS community calls, that no new cases of covid-19 have shown up among the people that receive long-term supports, and the levels of vaccination continue to climb:  75% was the vaccination rate at the end of July among the people DDS supports: (https://dds.dc.gov/sites/default/files/dc/sites/dds/publication/attachments/DDS%20Community%20%20Provider%20Forum_COVID%20Data%2007.30.21.pdf)

What remains worrisome, though, is that the level of vaccination among people supported exceeds that of provider-agency staffs, which was only 63% at the end of July with significant variability among different providers.  DDS has been helpfully collecting this information and posting it on its website – see https://dds.dc.gov/page/covid-19-vaccination-rates-dds-provider-staff for current numbers.  You can see for yourself that some providers are doing much better than others.  It’s also worth noting that the staff vaccination levels include administrative staff as well as DSPs, and that the overall vaccination levels for large organizations that have many different programs make it hard to know, for example, what the vaccination rate is among residential staff.  On the Friday calls in July, some providers were quite open and eager to share information about how they are trying to motivate staff to be vaccinated, while others have been more reticent.  While respecting HIPAA protections for individual staff, I believe that providers with 50 or more staff should be expected to break down their numbers further, e.g. between day and residential at a minimum, so that people can better understand potential risk levels as we head back toward the fall and more indoor living.

Work continues behind the scenes among advocates on the“Developmental Disability Eligibility Reform Amendment Act” (https://lims.dccouncil.us/Legislation/B24-0268).  I’ll have more on that soon.  Things will really begin to ramp up in September, with a possible hearing in October.  So get ready to activate next month – we’ll need your voice and your energy to get the legislation passed!

In the meantime, keep safe, and encourage others to do the same.

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!