The Upside and the Downside

Last night was a special evening, a time for celebrating community and recognizing the essential work of the Quality Trust in supporting DC residents with disabilities at their annual Better Together reception.  It was wonderful to spend time with Shawn Ullman, Quality Trust's CEO, and so many others involved in protecting and advancing disability rights every day - and it also was great to see Shawn's predecessor, Tina Campanella, who never misses an opportunity to visit us back here in DC when she can!

On a more sobering note, the DDS performance review last week, while examining DDS policies and actions over the past year, couldn't help but also touch on the nerve-wracking proposals, now making their way through the Congress, that could directly affect DC's overall finances as well as reduce federal Medicaid funding across the country.  Judging from today's news, risks to DC's budget may not even wait for next year, since the continuing resolution now under consideration would force DC to cut over $1 billion in spending between now and the end of September.

These risks to DC are the reason why I am so dismayed that different organizations concerned about our lack of national representation don't seem to be pulling together to fight the affronts to home rule that are right on our doorstep.  Each day I receive an email from a different organization, each wanting my support on behalf of DC's political rights.  But frankly it's dizzying - it's time, right now, for a united front among these various groups so I hope they will figure things out quickly, because our opponents are not waiting.  Here's a tip though:  The 51st continues to be a reliable source of information about our besieged future state (it WILL happen!), and it, at least, deserves your support if you're able to subscribe. Maybe they can do some research to help explain why we' have such a fragmented bunch of DC advocacy organizations...

Judy Heumann, Still Building Bridges!

In these trying times, it's a pleasure to get together with friends in a good cause.  So it was huge fun - not to mention informative - to be a part of Monday's event at UDC honoring Judy Heumann, national and local trailblazer for disability rights, who passed away on March 4, 2023.  Besides the inspiring videos and panels, there was an exciting announcement at the event, namely that Councilmember Frumin has introduced a bill to rename the Klingle Valley bridge on Connecticut Avenue in her honor.  Apparently a number of her neighbors at the Kennedy Warren apartment building had championed this idea.  DC's disability advocates, and the community at large, will want to turn out in support of this bill when it receives consideration by the DC council.  

Holding the Line on Home Rule

I promised in my February 11 blog post to give more air time to defending our DC democracy as well, and there are definitely efforts under way to undermine even DC's limited home rule. I'm doing my best to try to educate friends, especially in my home state of Tennessee, about the real DC and its longtime fight for democracy, but in this difficult moment, it helped me to get this encouragement from at-large DC Councilmember Christina Henderson:

Dear Neighbor,

“What have the people of the District done that they should be excluded from the privileges of the ballot box?” - Frederick Douglass, 1895 from his home in Anacostia 

It is not lost on me that at the same time our country is being thrust into a debate about the value of diverse and inclusive communities, and teaching the full scope of American history, that the District’s right to self-governance has also entered the chat. For over 130 years, this conversation about whether DC should have home rule has raged on, and though some are reluctant to admit it, race has always been a main character in the story. 

Most people do not remember that for much of the nineteenth century, Congress allowed residents in the District to elect their own local officials. At the time, however, only white, male landowners had the right to vote. Then in 1867, Black men were granted the right to vote in DC elections for the first time – yes, years before the passage of the Fifteenth Amendment. That was too radical for Southern members of Congress and elites in DC who were concerned about the growing political power of Black Washingtonians. And in 1874, they revoked home rule for everyone in the District. It was never about the Constitution. It was never about operations of government. Voting rights is always about power.  

What should you say to your family and friends who are probably asking your thoughts on the latest conversation? Tell them this – Washington, DC is a world-class city, home to 700,000 residents who are doing their best to live out the American dream just like everyone else. We are a beautiful mixed tapestry of cultures and lived experiences. We just had our 28th consecutive clean audit. Violent crime is down 30%. Our pensions are fully-funded. And our schools are award-winning. You’re always steps away from history, arts and culture, and the best libraries and parks in the country. And yes, our sports teams compete on the highest level. We relish in our role as host of national and international events, and fiercely protect the right of our residents and all Americans to exercise their First Amendment right in our town. No city is perfect and we do have some challenges to acknowledge, but this is my home – why shouldn’t I have the right to choose my representation and serve as a check on political power like all other tax paying Americans? 

The challenges that we currently face will not be our last, but we will continue to move forward and fervently hold onto the values and integrity of our city. Representing the District has been a profound honor and I will continue to defend her. I hope you will join me. 

And this from me again:  Don't sit on your hands!  We may not have representation (yet), but we have our voices, so use them to protect home rule right now!

Your Experience with DDS/DBH Coordination

DHCF head Wayne Turnage used his performance review testimony last week to talk about the troubling budget outlook for Medicaid, and there is no doubt that that that will be the big issue once the DC council starts budget hearings for FY 2026 later next month.  However, in the meantime, DDS still has not had its performance review hearing, scheduled for March 3.  As you know, I've been very focused in my blog recently on the kind of treatment people with disabilities receive when they get services from DBH.  Here is what DDS had to say in its pre-hearing questions on the subject of coordination with DBH:

28. Describe DDS’ collaboration with the Department of Behavioral Health. Include any specific partnerships on programs, initiatives, and events that DDS had with DBH in FY 24 and FY 25, to date.

In FY24 DDS and DBH collaborated to transition 147 DDS people to new behavioral health providers following the closure of the DBH Intellectual-Developmental Disability program at 35 K St.

In FY24, upon official notification that the 35 K St IDD clinic would be closing, DBH and DDS collaborated to ensure that patients were provided choice in the selection of new psychiatric service providers by: a. Collaborating on the official notification letters informing of the closing to ensure consistent messaging to CSAs, DDS service coordinators, DDS residential providers, guardians/decision makers, and patients. b. Identifying specific CSAs that had the capacity to take on the patients from 35 K St without delay, including the ability to schedule an intake within 7 days of referral. c. Requiring DDS service coordinators to work with the person and their interdisciplinary teams to choose a new psychiatry service provider.

DBH Provider Relations tracked 30- day, 60 -day, and 90- day follow-up appointments. Biweekly meetings between DBH Provider Relations and DDS Service Coordination were held throughout the transition to ensure patients were successfully placed with new providers. Currently, all DDS-linked patients have been placed with a new provider. DBH-IDD psychiatrist, Dr. Todd Augustus, has been available throughout the transition process to assist with questions/concerns and to consult with the 35 K St. Urgent Care Clinic on people with IDD who presented to UCC during the transition. In FY 25, DDS and DBH will continue this joint initiative to ensure that people with IDD receive high-quality and consistent behavioral health services. Dr. Augustus will provide ongoing consultative services to DDS and participate in interdisciplinary treatment team meetings for complex IDD cases, when requested. Dr. Augustus will also provide educational trainings to DDS and group home providers pertaining to mental health needs of IDD consumers through the DDS Nursing Roundtable. DBH and DDS have a well-established collaborative relationship which will continue to expand and evolve in FY 2025.

a. Does DDS encourage providers to contact DBH’s Community Response Team when an individual is in crisis or to contact 911?

The decision whether to call 911, the Community Response Team, or the Department of Behavioral Health (“DBH”) Assertive Community Treatment (“ACT”) team is made by the service provider, who acts based on the specific situation (i.e., whether there is a life-threatening emergency, or particular services are needed to ensure the safety of the person and staff). When 911 is called, a Crisis Intervention Officer (“CIO”) can be dispatched, meaning that a police officer with 40 hours of training in working with people who have mental illness and/or developmental disabilities will respond. Their training includes recognizing indicators that a person may have I/DD, communication procedures for people who have I/DD, and procedures for interacting with people who have disabilities. Two goals of the CIO program are to promote safe interactions between the police and citizens with mental health challenges and/or disabilities along with diversion of nonviolent mentally ill individuals, including people with dual diagnosis, from the criminal justice system to appropriate behavioral health services. Since June 2021, District 911 operators have been trained to identify situations involving mental health crises and to assess whether a police response is appropriate or whether they should redirect the call to the Community Response Team. Providers can also contact the Community Response Team directly or request DBH ACT services for people who receive those services as part of their mental
health treatment.

b. If someone receiving supports from both DBH and DDS needs housing and
supports, how do DBH and DDS work together to meet their needs?

DDS considers the suitability of the person’s current housing situation for meeting the person’s needs and, if necessary, explores the housing resources offered by DBH, DDS or other agencies. When a person requires individualized housing to promote their mental health recovery, DBH and DDS collaborate with the person’s ACT Team and the core service agency to identify housing options, rental subsidies, and community based behavioral health treatment services. If necessary, DDS will contact the Director of the DBH Housing Development Division or the Director of Residential Services and Supports to identify rental subsidies for the person. If the person receives housing supports from DBH and requires supports in the home and in the community, the DDS service coordinator works with the person and their circle of support to identify the appropriate waiver services based on the person’s assessed needs. The person selects a DDA provider for the service.

If you've had direct experience with DDS/DBH coordination, how has that worked out?  The DDS performance review hearing is an opportunity to testify and let the committee know what you've experienced - even if you can only send written testimony.

And if this isn't your topic but you plan to testify about some other aspect of DDS performance over the past year, you can take a look at all the committee questions, with DDS answers, here.by clicking here.

DC DBH Hearing and Follow-up

In my January 28 entry, I encouraged readers to participate in Georgetown's survey about the interactions of people with disabilities with DC DBH (what's that? check here: Terms) and to participate in the then-upcoming performance review hearing for DBH.  I was happy to testify at the hearing - here's my testimony - and proud to be joined by two members of Project ACTION! as well as a concerned family member, who described direct interactions with DBH.  (Others were, I know, submitting written testimony as well.)  

What struck me in the hearing was that not only people with developmental disabilities, but quite a few others who testified about their direct experiences with CRTs, CPEP (Terms) or one of DBH's community service providers, had encountered insensitive or poorly trained staff who made them feel misunderstood or dismissed.  There was substantial discussion throughout the performance review, during testimony by public witnesses on February 3 and also in questions to DBH director Bazron on February 5, about inadequate staffing, as well as difficulties in reaching the Access Helpline and poor CRT response times.

Despite the evident need for improvement in DBH services, budget challenges are going to loom large in the upcoming fiscal year in all the DC government programs overseen by Deputy Mayor Wayne Turnage, who will address some of these funding concerns in his February 20 testimony this coming week.  These concerns will continue to be a prominent feature of budget hearings throughout the spring.

MEDICAID FUNDING AT RISK

Today I'm posting about an issue that affects people with disabilities in DC (and nationwide), as well as many others who rely on Medicaid for healthcare coverage - moves are underway on the Hill to cut federal Medicaid funding to some states (and DC).  

Councilmember Henderson gave an excellent summary of what we may be up against in her most recent newsletter:

Watching on the Hill - As Congress hammers out their next steps on budget and reconciliation, there is one phrase all Washingtonians should get familiar with – FMAP, the federal medical assistance percentage. Medicaid is jointly funded by the federal government and the states. FMAP is a formula to determine the federal government’s share for Medicaid expenditures using per capita income. In general, the federal government pays a larger portion of Medicaid costs in states with lower per capita incomes and vice versa for states with higher per capita income. No state can have a FMAP rate lower than 50% and higher than 83%. See here for the current FMAP rates for states. There are several proposals currently floating around Congress to reduce the District’s FMAP to 50%. This would fundamentally upend our public health system affecting hospitals, providers, and patients, as we would be required to pay more than any non-state. I’m writing about this because lot of people read this newsletter and I fear that the FMAP issue is going under the radar. The District does not enjoy the ability of having voting representation in the Congress, and right now, we need our allies!

Federal Medicaid matching also affects supports provided to people with disabilities, across the nation.  So - especially to allies who read my blog and actually have senators and voting representatives on the Hill - help DC (and maybe your own state as well, because there are moves afoot to reduce ALL FMAP to 50%) - WRITE TO YOUR SENATORS AND REPRESENTATIVE that you don't want them touching Medicaid! 

A Slight but Important Language Change

Over the past 10+ years, the "DD" in the name of my blog has stood for "Developmental Disability."  Starting today, it also stands for "Defending Democracy," since nothing could be more important in our city-which-one-day-will become a state.  I will still be focusing primarily on issues important for the disability community, but, as reflected already in my profile, " I strongly support statehood for DC, where I have lived since 1978, since without it no DC resident, disabled or non-disabled, will ever be fully empowered."  It's obvious we have a real fight ahead of us, so let's get busy!

PARTICIPATE IN THIS IMPORTANT SURVEY

While preparing for next Monday’s DBH performance review hearing, I also want readers to be aware of the survey being conducted by Georgetown University’s School of Medicine on the experience of people with disabilities and their caregivers with mental health services here in DC.  If:

- you or someone you care for relied on supports from 35 K before it closed

- you are a disabled person who has interacted with one of the DBH community service agencies

- you are a caregiver who has interacted with one of the DBH community service agencies

- you have experience supporting people with disabilities at one of DC’s community service agencies

Then this survey is for you!  And if Georgetown gets good participation from the community, the (confidential) information they collect will be indispensable to the DC council and to DBH itself as they focus on needed reforms to better serve DC residents.  As you know if you’ve been reading my blog lately, I’m very focused on this topic right now, and very much looking forward to the outcomes of the Georgetown survey.  Here's a short description:

"[Georgetown is] looking for participants who are either adults with physical and/or mental disabilities, the direct caregivers of adults with physical and/or mental disabilities, or community-based mental healthcare providers practicing in the DC area. The primary goal of this study is to identify perceived barriers to mental healthcare access in participants with disabilities and their caregivers…By collecting the perspectives of both patients and healthcare providers, the hope is to gain a better understanding of the experiences of the disabled community and…to continue addressing the barriers to mental healthcare access that still exist today."

For more information, take a look at the attached flyers for people and caregivers and for community providers, and be in touch with Mary Tresvalles (mat321@georgetown.edu) with any questions.  Please help if you can!

REGISTER TO TESTIFY AT DBH PERFORMANCE REVIEW

I want to share a quick follow-up (thanks to Marcia Huff in councilmember Henderson's office!) about the upcoming DBH performance hearing.  The link to sign up for this hearing on February 3 is now live. 

Also, DBH responses to the committee's preliminary questions are due by January 27 and will be posted on the same link after they are received.

FY 2026 Performance Reviews Upcoming!

At last Saturday's Project ACTION! meeting, I reminded folks in the chat about upcoming performance review hearings before the DC council.  Here is the schedule:  DC council performance review calendar.  This is the first phase of DC council deliberations in preparation for the FY2026 budget.  A second phase of hearings, probably later in March, will address the budget itself.  

You'll see that - as was the case last year - the DDS performance hearing is quite late, not until March 3 - which will not provide much time between the hearing and the mayor's budget proposals.  As indicated in my previous blog posts in September, October and December of last year, I also have my eye on DBH during this budget season - that performance hearing is coming up soon, on February 3, so if you plan, as I do, to testify at that hearing, keep your eye on this link which should open up for witness signups in the next couple of days.

As you prepare for your testimony, and for your advocacy more generally, please recall this message that I included in an email on January 8:

As you read in my last post of 2024, there will be some continuity in the DC council’s oversight of DDS starting in January.  In fact, there is a lot of continuity in the council overall:  as you plan to testify or to contact your councilmembers over the coming year, you’ll want to use this page from my blog as reference: DC council contacts.  Another page in my blog, Terms and organizations, provides background on some of the terminology I use in my blog posts for your background.

The above resources will be helpful references for you as we come together in our advocacy throughout 2025 and beyond!  Very best to us all in this new, and challenging, year - 

Carol Grigsby (she/her/hers) is a dedicated advocate, focused on advancing rights and increasing opportunities for people with developmental disabilities in Washington, DC. A former member and chair of the DC Developmental Disabilities Council, I currently serve on several local groups focused on issues affecting the disability community. In addition to advocating for full inclusion of people with disabilities in our local community, I strongly support full rights and representation for residents of DC, where I have lived since 1978, since without real democracy no one in DC, disabled or non-disabled, will ever be fully empowered. Opinions in this blog are my own.