Saturday, February 10, 2024


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: 

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  (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:, 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 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:  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. 


  • 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!

Friday, December 8, 2023


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 -

Thursday, November 9, 2023

You Have a Date with Quality Trust on November 14!

You know Quality Trust (, 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 (

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

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

Saturday, October 14, 2023


It’s hard to believe that October is already half over!  As you plan the rest of your month, make room on the calendar for these important events:

  • Quality Trust’s “Envision Endless Opportunities” annual meeting, Thursday, October 26, 5-7pm in the UDC student ballroom at 4200 Connecticut Avenue NW.  QT’s annual meeting (it’s free! with hors d’oeuvres and refreshments) is always a great opportunity to catch up on the essential work QT has been doing over the course of the year on behalf of DC residents with disabilities – and also to meet up with friends in the community, in person not on Zoom!  Get your free ticket here: QT annual meeting 2023.
  • DDS monthly forum, Friday, October 27 at noon, on Zoom.  These DDS forums began during the pandemic, and continue to occur on the fourth Friday of the month.  Covid has been back on the agenda recently, with presentations last month by DC Health about covid and other fall viruses and by DDS deputy director Winslow Woodland about a survey DDS conducted on the lingering effects of the pandemic.  You can find these presentations here: Sept 29 presentations.  On October 27th DDS will be addressing, among other things, the shift away from companion care and back to other types of day supports as some of the federal pandemic-era programs wind down:  if you still are confused about the phaseout of companion care, you’ll want to tune in – contact to receive the link.
  • Employment issues will also be highlighted on the 27th, but even more so at the second annual Employment First Summit on October 31, being held again at the MLK library, from 9am-4pm.  You don’t need to attend for the entire day, but whenever you come, you’ll experience a lot of useful information and networking opportunities.  Register here: Employment First Summit.

You probably won’t be able to do all of it, but pick at least one of these and get it on your calendar!

Carol Grigsby (she/her/hers) is a dedicated advocate, blogging since 2014 on issues affecting people with developmental disabilities in Washington, DC. I am the immediate past chair of the DC Developmental Disabilities Council and the parent of a young man receiving supports from DC’s Department on Disability Services. 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. Opinions in this blog are my own.

Monday, September 25, 2023

DDS Personal Needs Allowance: More to Do in the New Fiscal Year!

It was a welcome surprise back in the spring when DDS announced an increase in the personal needs allowance (PNA) - the amount people getting DDS residential supports keep to spend as they want (  At the time, DDS director Andy Reese specified that the PNA would increase to $150 on October 1 and then get a cost-of-living increase every January starting with January 1, 2024 (listen here at minute 47:00:  I have to admit though, that over recent weeks, with no new announcement and October around the corner, I’ve been getting apprehensive that all was not quite right.

Well, I was sort of wrong to worry…and sort of right.  At the DD council’s meeting on September 21, Andy finally did announce the October 1 increase to $150, but the following day, on the DDS community call, he gave a little more detail, clarifying that the cost-of-living increases are not built into the budget and will require ongoing advocacy.  In response to my direct question as to whether the January 1, 2024 cost-of-living increase would happen, he said no, no further increase until January 1, 2025 – and if I understood him correctly, even that will depend on advocacy to ensure the money is in the DDS budget for FY 2025.  (Listen to the recording of last Friday’s forum, which will appear here - - in a few days.) This means that advocates – INCLUDING YOU! – will need to turn out in force at next spring’s DC council hearings to make sure the mayor and councilmembers know that we want to see the personal needs allowance keep up with inflation from now on, going into the future!

On a couple of other topics: 


Carol Grigsby (she/her/hers) is a dedicated advocate, blogging since 2014 on issues affecting people with developmental disabilities in Washington, DC. I am the immediate past chair of the DC Developmental Disabilities Council and the parent of a young man receiving supports from DC’s Department on Disability Services. 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. Opinions in this blog are my own.

Tuesday, September 12, 2023

Fall Events

Fall is upon us, and activity is ramping up.  Some important upcoming events:

  • The Developmental Disabilities Council (DDC) will hold its quarterly meeting on September 21, from 3-5pm, at 441 4th Street, NW, Suite 729N or via Zoom.  Questions, or to get the Zoom link -  contact Alison Whyte (
  • 5th Annual Latinx Conference on Saturday, September 30, from 10am – 4pm, at the Columbia Heights Educational Campus, 3101 16th St, NW.  Contact Mark Agosto ( or Alison Whyte (
  • As announced by DDS director Andy Reese in the community forum on March 24 and in his testimony before the DC council on March 29, the personal needs allowance (PNA) for people receiving residential supports from DDA will increase from $100/month to $150/month on October 1, with further cost-of-living increases on January 1 of each year.  I’m sure DDS will be making a more formal announcement about this before the end of this month.


Thursday, August 31, 2023

Keeping People's Rights at the Forefront

This has turned out to be a different type of year from the one I expected. Many of you may share that feeling, given that we’re all still going through a period of adjustment in the wake of our long pandemic.  I launched into this year in full confidence about the areas in which my advocacy could make a difference, but I’ve found myself drawn by personal experience and serendipity in a new direction.

Early in the pandemic I served on a working group examining how DDS and partner agencies should balance the desire to protect people from contracting covid-19 with the need to respect people’s rights to make their own individual decisions.  Tiffani Johnson, rights and advocacy specialist at DDS, and Sandy Bernstein, legal director at DRDC/ULS, delivered a much-needed refresher on those issues at the DDS Friday forum this last February. (Recordings and presentations from the Friday forums can be found here:, although I wasn’t able to find the Power Point for their February presentation and I’ve asked DDS to post that.)

Obviously, though, such thorny issues arise not only in the context of a pandemic but in other day-to-day situations too, and recent developments have made me appreciate just how important it is for people to have advocates in their corner when the hard cases come up.  Shortly after her presentation with Sandy, in April Tiffani invited people attending the Friday forum to volunteer as members of the RCRC (Restrictive Control Review Committee, primarily responsible for reviewing restrictions contained in behavior support plans) or the HRAC (Human Rights Advisory Committee, responsible for broader protections of people’s rights under DDS programs).  These groups include self-advocates, family members, and other advocates. (See the link above for the April recording and Power Point.)

For as long as we’re around, my son will have his father and me to advocate for him and to help him ensure his rights are being respected, but it’s also good to know there are people conducting an independent review of whether DDS and its partners are adequately protecting individuals’ rights through the programs they administer.  I also know there are people getting DDA services who, for lack of family or other supports, have to depend entirely on this independent review process. Tiffani’s presentation came at the right time for me as I weighed the most effective use of my advocacy skills at this time, so I’ve joined the HRAC to see if I can help make an important difference in a few people’s lives.  Maybe you want to see this process in action for yourself, and if so I’d encourage you to reach out to

Carol A. Grigsby is a disability rights advocate and the parent of a disabled young man receiving supports from D.C.’s Department on Disability Services.

Thursday, May 25, 2023

Medicaid Recertification Happening Now!

Over the past couple of months you’ve probably been hearing and reading about the process of Medicaid renewal (recertification) that’s taking place now the pandemic emergency has ended.  This is going to be a very challenging process.  In DC, the process is being managed by the Department of Health Care Finance (DHCF), which is sending out renewal forms that will need to be returned by July 31, 2023.  Everyone should be on alert and watching for this form in the mail.  The name of the form is “Conversion Renewal Form,” which creates immediate confusion.  Here is the information from the DHCF website, along with a sample form posted online:

DC DHCF Renewal Form

The form itself is 62 pages long, although most people will only need to fill out selected sections. 

Winslow Woodland, DDS deputy director (, has clarified in a number of meetings that agencies providing residential supports in DC will be responsible for seeing that these forms are completed and submitted to DHCF.  Unfortunately, from what I can tell, anyone else receiving waiver services in DC will be responsible for completing the form with the help of friends of family, or at one of the assistance centers listed in the form.

DHCF has been invited to attend the DDS community form (contact to get the invitation) tomorrow, May 26, at noon.  Come with your questions!

Saturday, March 25, 2023

Budget Surprise - and Your Opportunity to Show Up!

In my last blog post - March 22 blog post - I said I’d be listening to see what was said about the personal needs allowance (PNA) for people getting residential supports from DDS.  So I was surprised (and pleased!) to learn, in DDS director Andy Reese’s budget briefing yesterday, that the mayor’s proposed FY24 budget includes $745,000 to allow DDS to increase the monthly PNA from its current level of $100 to $150, starting in October 2023.  The increase is intended to make up for 15 years without any cost-of-living increase in the PNA.  He also said that DDS intends to ensure, beginning in January 2024, that the PNA will receive the same annual cost-of-living increase that the Social Security Administration makes in its yearly January SSI payments.

This was astonishing news!  But remember – this is a proposed budget, and as Colby King reminds us in his Washington Post article today, Colby King on DC budget, DC is even more under the Congressional microscope (thumb) than usual.  It’s important to come together as residents and responsibly express our priorities for the life of our future state(!) in DC council hearings.  Particularly in light of the many empty downtown buildings, DC cannot count on the level of resources it has enjoyed in recent years, so we have to be selective and targeted in what we advocate for.  For this reason, I will tell you transparently that I can’t favor the DC council’s push for free bus service at this time – I fear a sweeping change like that will come at the expense of other lower-cost, but very important priorities.  (I say this as someone who initially favored this move, when it seemed we would continue to run substantial surpluses.)

You may not agree with my views, and that’s okay!  Take a look at these:

FPI guide to the DC budget

Influencing the DC budget

Proposed FY24 DC budget

Proposed FY24 DC DDS budget

and then sign up to testify on Wednesday:  March 29 signup.  The hearing is on Zoom, so you can participate from home, or from anywhere!  Or if you can’t testify “in person” (on Zoom), then plan to submit written testimony.

Advocates will be testifying about the personal needs allowance, making sure DSP wages are increased to the agreed 117.6% of the DC living wage, ensuring that wait times for DDA applications aren’t keeping newly-eligible applicants from getting services, promoting affordable housing and employment for DC residents with disabilities, and more.  Your voice is essential to make sure the views of people with disabilities and their supporters are clearly heard!

And one more thing:  This coming Thursday, March 30, the day after the budget hearing, DDS will host (at 250 E St SW) the final program in a full month of Developmental Disability Awareness Month (DDAM) events - DDAM March 2023.  There will be an art show/sale from 3-4, then the program from 4-6.  And this year, Mayor Bowser herself will be in attendance, so be there if you can, to show her our enthusiasm and determination!

Curious about some of the terms I use?  Check here: Terms and organizations

Wednesday, March 22, 2023


The mayor’s FY 2024 budget appeared today, and on Friday March 24 at noon, Director Andy Reese will be briefing the community about the DDS budget – - so log on here at noon Friday to hear what he has to say at the Friday forum: DDS community forum link.

I will be listening especially for two things:

  • Plans to implement cost-of-living increases for the monthly personal needs allowance received by people getting residential supports, which has been stuck at $100 a month for 15 years with no increases;
  • How wage increases for the indispensable DSP workforce under the DSP Payment Rate Act, passed 3 years ago, are going to be assured going forward.

I hope you’ll tune in to hear what Andy has to say on Friday, and then go to this site - March 29 signup -  and sign up to testify before the DC council’s Committee on Facilities and Family Services on Wednesday, March 29.  If you can’t deliver testimony, at least make sure that you submit written testimony, which usually is due by one week following the hearing.  We were successful last year at getting revised eligibility criteria for disability supports passed by the council – make sure that new committee chair Janeese Lewis-George knows that we remain an active and determined constituency!

Also, take a few minutes now to enjoy these photos from Quality Trust’s Better Together reception on March:  It was a wonderful event!