DBH: Below the Tip of the Iceberg

My last blog post about bill B25-0692 ("Bill B25-0692 needs disability community involvement") has elicited a lot of comment, and also unearthed other concerns about how DBH interacts with the disability community in DC.  (See DC Disability-Related Organizations and Terminology.)

First, with respect to the bill:  I was very pleased to hear back immediately from Committee on Health chair Christina Henderson (chenderson@dccouncil.gov) in response to my blog post.  She informed me that “the legislation was not jointly referred to the Committee on Facilities and Family Services which is why there was no hearing with that Committee on this bill. At the hearing in July we had testimony from several witnesses representing the disability rights community.”  She further invited me to discuss the bill further with her staffer, Marcia Huff (mhuff@dccouncil.gov), who has since contacted me.  I’ve appreciated the responsiveness, and plan to follow up. 

But beyond the bill, my blog post surfaced another issue, this one not before the council.  That issue is the abrupt closure, in less than two weeks, of the DBH program at 35 K, which for many years has provided top-drawer psychiatric services for people with intellectual and developmental disabilities.  As best I understand it, DBH had already indicated in its FY24 budget that it was planning to phase out direct services such as this one and to redirect people toward its community implementing partners (DBH core service agencies).  However, those actually receiving the services at 35 K were only given a few weeks’ notice of the October 1 closure.  Given how extremely difficult it is to locate psychiatric services of any kind, much less psychiatric services for those with co-occurring disability and behavioral health issues, this short lead time is truly unthinkable.  DBH owed, and owes, it to the people with disabilities that it serves to provide more advance notice of proposed changes.

And we mustn’t think that it stops there.  DDS has been trying for a long while, not always with great success, to foster closer coordination with DBH.  And why? Well, think about it.  If someone calls 911 about someone with a disability:

• If they’re lucky then a community response team (DBH community response) will be deployed instead of, or with, the police;
• They may then be taken to CPEP, the Comprehensive Psychiatric Emergency Program location (CPEP) OR
• They may wind up at the much-investigated Psychiatric Institute of Washington (PIW) for psychiatric detention; AND
• In the most extreme cases, a disabled person can be charged, tried in court, and sentenced to be institutionalized at St. Elizabeth’s (St. Elizabeth's).

All of these, with the exception of PIW, are directly administered by DBH, and PIW, the only one that isn’t, receives a huge number of the psychiatric referrals from DBH.  But DBH is set up, by and large, to serve people with behavioral-health issues but not cognitive, developmental or other disabilities (and even less so, now that they’re closing 35 K!).  We’re seeing more and more people with unrecognized disabilities, or with dual diagnoses of disability and mental illness, being served by behavioral-health entities, so there needs to be even greater collaboration happening between DBH and DDS – which mostly means that DBH and the DC council need to recognize this and make sure the outreach to DDS, and to the disability community more broadly, occurs on a regular and ongoing basis.  And we, the constituents, need to watch DBH and any bills affecting DBH in the DC council, much more closely. 

Start by letting DBH director Bazron (DBH "Ask the Director") and Committee on Health chair Christina Henderson (again, chenderson@dccouncil.gov) know you have a stake in the outcome of bill B25-0692, and the DBH’s abrupt closure of 35 K.  Let your voice be heard, and do it today!

Do you know something more about this issue?  Want to correct something I've written?  Comment below! 

 

Bill B25-0692 on DBH reforms needs disability community involvement

 This past week, DRDC-ULS (see DC disability-related organizations and terminology) brought to my attention a proposed bill, B25-0692 – now before the DC council’s Committee on Health (see B25-0692 DC council page) - which, among other things, would extend emergency involuntary detention at psychiatric facilities such as the notorious Psychiatric Institute of Washington.  The bill contains a number of other provisions as well that advocates in the hearing considered unnecessary (already possible under existing safeguards) and damaging to individual rights.  The council has not yet voted on this bill, which contains a number of provisions that could harm people with developmental disabilities in our city.  Please take the opportunity to review the video of the July 11 hearing on the bill starting around minute 50 in the- Video of July 11 hearing - in which Jaclyn Verner of DRDC-ULS (around 1 hour and 45 minutes into the video) and others raised serious issues with the bill.  

Please write and express your concern to committee chair Christina Henderson about the bill by writing to her here: chenderson@dccouncil.gov.  Ask her, at a bare minimum, to hold up the bill until a joint hearing with the committee on facilities and family services, chaired by councilmember Janeese Lewis George, can be arranged. The large number of dually-diagnosed people finding their way into psychiatric facilities requires this broader consideration.

Write chenderson@dccouncil.gov today to delay voting on B25-0692 and allow for a more thoughtful assessment of needed reforms at the Department on Behavioral Health.

DC Disability: Housing vs. Choice?

Over the past couple of years, I’ve been part of a working group, chaired by DDS/DDA deputy director Winslow Woodland, that has been examining different options and partnerships to make housing more available, accessible and affordable for people with disabilities in DC.  The efforts this group is undertaking go well beyond DDA-funded residential supports for people who qualify for its services, but DDS has hoped that this group could help identify housing alternatives to enable it to move away from paying rent for people under the IDD waiver (see DC disability-related organizations and terminology).  DC is indeed unusual in having its disability support agency pay rental costs – most states rely on housing vouchers or other programs, separate from disability services - but in this city where so many are priced out of the rental market and the waitlist for housing vouchers can be decades long, I admit to being unsure if it’s desirable for DDS to extricate itself from paying housing costs for those it supports.  Lately, though, I’ve realized there’s another side to this coin that could complicate the future direction of advocacy in DC.

DDS/DDA has always sought to place new recipients of residential supports into vacant slots in existing apartments for which it already is paying rent.  Lately though, as the DC budget faces increasing constraints, DDA is taking a harder line on enforcement.  If you’ve tuned in to recent DDS Friday forums (Power Points and recordings), particularly this past June, you will have heard DDS officials explaining to some of DC’s newer provider agencies why they are not receiving referrals for provision of residential services.  Simply put, this is because existing providers in DC are the ones that already have available vacancies, and given budget realities, the DDS position is that it can’t incur new rental costs from a new agency when there are vacancies in paid-up apartments elsewhere. 

Why this may matter comes down to whether people are happy with the existing cast of DC provider agencies or believe that there is a need for new blood and greater choice. When advocates and families were celebrating success in having pushed through the DDERAA bill (see DC disability-related organizations and terminology) in 2022, we expected that new agencies with more cutting-edge knowledge of autism and other developmental disabilities would enter the field alongside more established, longtime DC residential providers whose expertise was shaped by DDS’ pre-2022 focus solely on people with intellectual disabilities.  What’s now becoming evident, though, is that newer providers are having trouble getting referrals as long as there is a vacancy backlog with existing providers – 60 vacancies as of June, according to DDS director Andy Reese.

This is a dilemma, and I don’t have an automatic solution to propose.  But if DDS support for housing is standing in the way of new providers entering DC, that does provide food for thought and is going to require careful consideration as we move forward to create a more inclusive service system in DC while the budget noose keeps tightening.

Do you have any thoughts on this?  If so, please enter your comments below!

Carol Grigsby is a dedicated advocate (she/her/hers) focused on advancing rights and increasing opportunities for people with developmental disabilities in Washington, DC.  I am a former member and chair of the DC Developmental Disabilities Council and serve on several committees and groups chaired by DC’s Department on Disability Services.  In addition to advocating for full inclusion of people with disabilities in our local community, I strongly support statehood for DC, where I have lived since 1978, since without that no DC resident, disabled or non-disabled, will ever be fully empowered. Opinions in this blog are my own.

BUDGET UPDATE AND MORE

In my last blog post (Will Disabled People Bear the Brunt of Shared Sacrifice?), I discussed the state of play with the fiscal year (FY) 2025 DDS budget, in particular the mayor's proposed elimination of the clothing allowance for people getting residential services and the curtailment of administrative fees paid to provider agencies.  Fortunately, the chair of the Facilities and Family Services committee, councilmember Janeese Lewis George, was able to partially restore both amounts in the budget finally passed by the full council, although there are slight differences in the impact this will have on later-year budgets, as explained by Director Andy Reese in the last ten minutes of June’s DDS forum (June 28 2024 DDS forum, starting at minute 1:11:00). To recap and summarize:

 -   Historically, residential providers have received $600/year ($50/month) for clothing purchases on behalf of people they support.  The mayor’s budget proposed to remove the clothing allowance entirely, but the council restored 56% of the cut, so in FY 2025 the individual clothing allowance will be $336/year, or $28/month. (In terms of the budget, the council restored $416,000 of the proposed $744,000 reduction.)  The further news is that this amount will become part of the base, or continuing, budget going forward as planning for FY 2026 and later years begins.

 -   A second proposal was to reduce the total administrative fees, which are negotiated individually with residential providers under human care agreements (HCAs), by half - from the FY 2024 amount of $2.9 million to a little more than $1.4 million in FY 2025.  The council restored $900,000, so the FY 2025 total is a little over $2.3 million – but unlike the clothing allowance, this is a onetime restoration of funds and will not be in the base, or continuing, budget going forward, which means the “starting point” for FY 2026 will be $1.4 million unless the additional funding can be found somewhere.

The June 28 forum also included an explanation from Reese that there have been payment delays, though no outright budget reductions, from RSA to provider agencies over this past year (FY 2024).  Reese explained (in the last five minutes of the June 28 recording) that the complicated way in which RSA grant funds are provided and expended did trigger delays and led to internal discussions of a possible RSA waitlist, but that has so far not occurred. 

As I pointed out last month, and as Reese reiterated in the June forum, reductions to DDS funding and other parts of the DC budget for FY 2025 spell greater difficulty in future funding deliberations than we have seen in many years. For this reason, Reese has proposed to begin talking with advocates in September about how to shape the FY 2026 budget in a way that protects the most crucial priorities for the disability community in DC. So stay tuned for more information on that, and prepare to get involved in those discussions this coming fall and spring - Councilmember Lewis George’s fantastic staffer on our issues, Sebastian Weinmann (sweinmann@dccouncil.gov), made a special point of saying that the excellent turnout by advocates was what had made it possible for Lewis George to accomplish what she was able to in the council’s FY 2025 budget revisions.

And now, an important footnote:  DC Quality Trust, a unique organization with deep and meaningful roots in DC, will hold its annual gala next month at the Grand Hyatt Hotel, 1000 H St NW (QT Summer Breeze Gala on August 18).  It’s hard to overstate how much difference QT makes, in ways large and small, sometimes visibly but often behind the scenes - so turn out in force to show you believe in QT's mission and want them around for decades to come! DO NOT MISS THIS if you're in town, and if you aren't, be sure to donate anyway!

Will Disabled People Bear the Brunt of Shared Sacrifice?

The last time I wrote, we were waiting for the mayor to release her FY 2025 budget.  That “Shared Sacrifice” budget (FY 2025 "Shared Sacrifice" DC budget),  which is now in the hands of the DC council, contained cuts to the DDS budget that generated considerable concern at the May 2 hearing before Councilmember Janeese Lewis George’s Committee on Facilities and Family Services (Video recording of May 2 committee hearing, with testimony by public witnesses about DDS beginning about 2 hours into the hearing, and DDS director Andy Reese’s testimony starting after about 4 hours and 10 minutes.)

With respect to RSA, Reese said that the WIOA requirement to use 15% of federal funds for pre-ETS services, along with the federal maintenance-of-effort requirement to increase local funding by at least a dollar more than in the last complete fiscal year (FY 2023), are placing significant pressure on the RSA budget in FY 2025, but he stressed that RSA funding will be sufficient to meet all anticipated needs.  There was considerable witness testimony about the possibility of inadequate funds for a number of transition programs, but Reese said no reduction in funding for SchoolTalk or the DC Special Education Cooperative was foreseen.  Councilmember Lewis George also questioned Reese on measures being taken to address the many concerns raised about administration of the Randolph Sheppard program for blind vendors in the February performance review hearing.  Reese said that DDS is very close to hiring a new manager for this program and that those concerns are being addressed.

There were also many witnesses that came forward with respect to the DDA budget.  The issues which received the most attention were:

-          The proposal to require people receiving residential supports under the DDA waiver to cover the cost of clothing, now covered through a $600/year clothing allowance, under their personal needs allowance (PNA) instead.  The PNA (monthly spending money) was raised last fiscal year, for the first time in over fifteen years, from the $100/month established in 2007 to $150/month.  This increase was intended to compensate for the lack of any cost-of-living increases (COLAs) throughout those years, and COLAs were to be added to the PNA each fiscal year from now on.  It was pointed out by many that requiring the $600/year clothing allowance to be covered by individuals’ PNAs would essentially wipe out their $50/month PNA increase  put in place with great fanfare just last year.

-   -      A 50% cut in the administrative fee that DDS furnishes to providers of residential supports.  This cut had already taken place, with little advance notice to providers, at the beginning of April, and agencies testifying argued that the proposed continued reduction could have an impact on the quality of services in the future.

Additional issues raised with respect to DDA supports included the fact that, for the second year in a row, there is no COLA in the DDA rent ceiling. (Reese defended the absence of a rent COLA, arguing that the current DDA ceiling is higher than HUD (federal Department of Housing and Urban Development) fair-market rental rates in some DC wards and lower in others; he also said that 70% of people in DDA-supported living live in DC, only 30% in Maryland, and most of those near Metro.)  Wage rates for nursing staff and supervisory staff were also raised as issues needing to be addressed.

Lewis George expressed concern about the proposed elimination of the DDA clothing allowance and the reduction in administrative fees for residential providers, and in subsequent council deliberations she has gotten partial restoration (about 2/3) of each of these.  The first reading of the council’s budget took place on May 29, with the second and final reading due next week.  However, even if the DC council restores some of these funds in FY 2025, the same cuts, and more, may emerge again next year.  DC budgets are projected to be tight over the coming few years, and this is going to demand greater effort on the part of disability advocates (this means you!) in order to ensure that those most vulnerable do not bear the brunt of future cuts. 

New schedule for FY 25 Budget Hearing

You may have noticed that the mayor’s FY 2025 budget was delayed – it’s now expected to reach the DC council on April 3 – see DC council schedule for FY25 budget.  This means that the budget hearings have likewise been delayed, and the hearing for DDS, ODR AND MODDHH (always check terms and organizations for unfamiliar terms) is now going to take place on May 2 – here is the link for this all-virtual hearing:  May 2 hearing.  As of yet, the link doesn’t allow you to sign up to testify, but for now you can contact Sebastian Weinmann at sweinmann@dccouncil.gov to let him know.  [Note (April 2):  You can now register to testify on May 2 at the link above.] It’s going to be a tight budget year, but we are hoping to be able to count on the promised cost-of-living increase (COLA) for the personal needs allowance, and possibly also a COLA for the rent cap for people getting residential supports from DDA.

Also, as we close the book on Developmental Disabilities Awareness Month (DDAM), here is a photo of the program from last week’s DDAM awards ceremony, and one of DD council’s Kevin Wright emceeing the event:

DEVELOPMENTAL DISABILITIES AWARENESS MONTH: CELEBRATE…BUT ALSO ADVOCATE!

Yes!  This is Developmental Disabilities Awareness Month (DDAM), and there’s a host of events that you can find right here:  DDAM 2024 calendar.  Coming right up, next week, are two special things to note:  

•         First, get out there and celebrate at Lia’s near Friendship Heights, at Quality Trust’s annual Better Together reception, starting at 5:00 on Monday, March 11.  Here’s what you need to know:  Better Together March 11.  DO NOT MISS IT!  I want to see you there!
•         The very next morning, self-advocates will want to attend NACDD’s Developmental Disabilities Capitol Hill Resource Fair, where you can have their say on an open mic about how the federal government and Congress can help you lead better lives in the community.  It’s 9-11am on Tuesday, March 12, in the Rayburn House Office Building.  More here https://nacdd.org/ddam1/ and register here to speak at the event: Signup for March 12 on Capitol Hill.  Have any questions?  Contact Erin Prangley at eprangley@nacdd.org.

Okay, now everybody – self-advocates and others – Get your advocacy chops on and PLAN TO TESTIFY AT THE DDS BUDGET HEARING ON MARCH 25.  (At the same session the committee also will be hearing testimony on the Office of Disability Rights and the Mayor’s Office of the Deaf, Deafblind and Hard of Hearing.  Here’s where you can learn more:  DDS budget hearing March 25.  I haven’t yet found signup information, but while you’re getting yourself ready, have a look at this:  Background on the FY2025 DC budget.  And for a little more background in preparation for this hearing, you may also want to listen to the testimony (including mine!) before the Committee on Facilities and Family Services in the performance review hearing on February 23:  Video of Feb 23 hearing.  DDS testimony starts with Project ACTION! representatives at around minute 1:16:00 of the video and ends when DDS director Andy Reese concludes just before minute 5:25:00 of the video, with ODR and MODDHH before and after.  Committee chair Lewis George reminded us at the hearing that this is going to be a tough budget season, so it’s important to get to the hearing and testify about issues such as cost-of-living increases to DDA’s personal needs allowance, rent ceiling and grocery allowances – you can hear me address some of these around minute 1:43:00 of the video, with other witnesses starting around 3:05:00 addressing these and other important DDA and RSA issues.

I know you may not have time to listen to all this, and that’s okay!  What’s important to you?  Step up and testify!  I’ll let you know as soon as I hear where on the DC council website you can sign up to testify on the budget on March 25.  JUST DO IT!

QUESTIONS ABOUT TERMS OR ORGANIZATIONS I MENTION IN THIS BLOG?  CHECK OUT Key organizations and terms – and always let me know in the Comments if I’ve missed one!

FEBRUARY 23: SPEAK UP ON DDS PERFORMANCE!

In my last blog post of 2023, I reminded readers that the performance review hearings would be coming up soon.  The one for the Department on Health Care Finance (DHCF), which handles Medicaid funding issues, took place on February 8 – you can find the videos here, with witnesses testifying in the morning and DC government officials in the afternoon:  https://dccouncil.gov/video-archive/. 

The DDS performance review hearing (hybrid, in person as well as on Zoom) is scheduled for February 23, and it is not too late to sign up – the easiest way is to contact Sebastian Weinmann In Councilmember Janeese Lewis George’s office at sweinmann@dccouncil.gov.  (Lewis George chairs the Facilities and Family Services committee which oversees DDS.)  You also should be able to sign up to testify at this location:  https://lims.dccouncil.gov/hearings/, although the site has not been functioning well so the above email is a more certain way to get registered to testify. Please, do not expect others to carry your water:  sign up to testify!  It’s important to be heard.

Here are some of the issues that are on the top of my mind as I begin writing my own testimony:

• The DDERAA law, opening up eligibility for DDA services to people with developmental disabilities other than an intellectual disability, was passed unanimously in March 2022 and began implementation in October of that year.  (See https://lims.dccouncil.gov/Legislation/B24-0268.) DDS now has had over a year of experience under the new eligibility terms, and I am hoping for a very complete review of the experience so far – including numbers of applications; whether any applicants have been declined and if so, why; how long it is taking from application to initiation of services; whether there are substantive changes in the needs of people coming through the door, and other issues of that nature.  If you or your family has had any experience with applying for DDA services since October 2022, it would be especially important for the Council to hear from you!
• Second, last year it was DDS’ stated intent to raise the personal needs allowance (PNA) for people getting residential supports to $150, and also to initiate an annual cost-of-living increase (COLA) beginning in January 2024. (Listen at minute 47:00 of this recording: https://dds.dc.gov/node/1654616.)  In the end, the PNA was raised, but there was no COLA instituted in January.  It’s clear that advocates will need to continue raising our voices to ensure the PNA increases with inflation each and every year starting next January.  Plan to testify in support of the PNA COLA on February 23 if you, a family member or friend is receiving residential supports from DDA. 

*REMINDER:  IF YOU ARE EVER CONFUSED BY THE TERMS I USE IN MY BLOG POST, TAKE A LOOK HERE:  DC Disability-Related Terms and Organizations. 

• Third, there’s been a lot of time and effort by DDS and advocacy partners (myself included)  to explore housing alternatives and programs for people with disabilities in DC.  One important outcome of DDS efforts is the newly released housing guide (DDS Housing Resource Guide), on which housing coordinator Pam Johnson gave a presentation in last month’s Friday forum (Pam Johnson's January 26 presentation).  The work that has gone into producing this resource is impressive, but the resulting document is very complex and hard to negotiate without substantial technical advice and assistance.  The challenge now is to give much more thought to which aspects of the guide are especially pertinent for DDS’s core audience of people with disabilities and their supporters.  Are you trying to find good housing options in DC, whether to rent or purchase?  Let the council know on February 23 about the living situation you’re hoping for and what information you need to achieve it.
• Finally, in my simultaneous roles as active advocate and the mother of someone receiving supports from DDA, I’m sometimes dismayed to see that new decisions and developments proudly announced in meetings led by senior DDS officials do not “filter down” to provider staff, or even to DDA service providers. I’ve seen more than one example of this over the past year, and I’m confident there are others. Something more needs to be done to get the word out and down – through more thorough in-house training, and better outreach through various means. Have you had the experience that your service coordinator or provider was unaware of new DDS policies or other important changes? Let the council know on February 23!

I’m aware that my concerns are focused on DDA, which is only one arm of the Department on Disability Services.  Some of you are more in contact with DDS through its Rehabilitation Services Administration.  If you have had direct experience with DDS/RSA over the past year, now is the time to turn up (in person or virtually) to let the council know what is going well and where improvements are needed.

Again, don’t leave it to others – even if you can’t testify orally, you can submit written testimony – so make sure you raise your voice to the council on DDS performance over the past year!

LOOKING OVER THE HILL TOWARD NEXT YEAR'S BUDGET

I know that everyone is focused right now on holiday preparations, but soon after the New Year the DC council will be scheduling performance review hearings, which set the stage for development of the DC budget in fiscal year 2025.  We already know that maintaining the $150 “floor” for the personal needs allowance and providing for annual cost of living increases in the PNA will be an important point of advocacy – see September blog post on DDS PNA – but it’s important to start thinking as well about other issues that deserve DDS attention.  In preparation for the upcoming budget season, familiarize yourself with the key actors on DC disability issues at blog page on key DC council members and start thinking about changes you would like to see in the coming year.  And - plan to testify! 

Watch this space, and happy holidays -

You Have a Date with Quality Trust on November 14!

You know Quality Trust (https://www.dcqualitytrust.org/), the organization that has been doing so much to support people with developmental disabilities in DC for over two decades.  You can get a great meal AND support QT this coming Tuesday, November 14, from 5:00 – 9:00pm at BLUE 44, located at 5507 Connecticut Avenue, NW, WDC  20015. I’ve eaten here many times, the food is great!

Quality Trust will receive 15% of the proceeds of all meals ordered during that time when the customer mentions “Quality Trust” on take-out, pick-up, delivery, and meals eaten at the restaurant.  That’s all!  Just mention Quality Trust!  There also will be some tables reserved for QT staff and supporters, but make your reservations as soon as possible because space is limited.

Even if you can’t attend in person, you can also order your dinner for pick-up, take it home and support Quality Trust. 

Here is a link to the menu:   Blue 44 Restaurant and Bar - Food Menu (blue44dc.com)

If you have any questions please don’t hesitate to call Phyllis Holton on 202-270-1256 or email her at pholton@dcqualitytrust.org.

Don’t miss this great opportunity to have a fantastic meal and support an essential DC organization at the same time!