Monday, June 3, 2024

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. 

Monday, April 1, 2024

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 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:

Wednesday, March 6, 2024


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 and register here to speak at the event: Signup for March 12 on Capitol Hill.  Have any questions?  Contact Erin Prangley at

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!

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.