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 (https://www.ddinwdc.com/2023/03/budget-surprise-and-your-opportunity-to.html).  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: https://dds.dc.gov/node/1654616).  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 - https://dds.dc.gov/node/1470236 - 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: 

• Earlier this year I blogged about issues with Medicaid renewal – if you continue to have questions about this, here is some up-to-date information from DC council chair Christina Henderson: https://www.youtube.com/watch?v=dyyr5g6wjKo (presentation by DHCF to ANC commissioners) and https://lims.dccouncil.gov/Hearings/hearings/93 (September 11 council hearing on Medicaid renewal). 
• Also, remember the upcoming Latinx conference on September 30 (see my last blog post - https://www.DDinWDC.com/2023/09/fall-events.html - and https://dds.dc.gov/event/dc-latinx-conference-disabilities).

 

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.

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 4^th Street, NW, Suite 729N or via Zoom.  Questions, or to get the Zoom link -  contact Alison Whyte (alison.whyte@dc.gov).

• DDS Community and Provider Forum on Friday, September 22^nd from 12-1:30 pm via Zoom. Recordings of past meetings can be found at https://dds.dc.gov/node/1470236 and Power Points of presentations at https://dds.dc.gov/node/1519506.  Get the Zoom link by contacting Charlisa Payne (Charlisa.Payne2@dc.gov).  With covid again in the news, this session will share important updates. 
• NOTE: In my last blog post (https://www.ddinwdc.com/2023/08/keeping-peoples-rights-at-forefront.html):  I mentioned the presentation last March on people’s rights during the pandemic - that Power Point can't be found on the main page at https://dds.dc.gov/node/1519506, but you can get to it by clicking on the link “Covid Data for Forum 12.02.2022 – 02.24.23,” which will open  https://dds.dc.gov/node/1655841, and you'll find it there.

• 5^th Annual Latinx Conference on Saturday, September 30, from 10am – 4pm, at the Columbia Heights Educational Campus, 3101 16^th St, NW.  Contact Mark Agosto (mark.agosto@dc.gov) or Alison Whyte (alison.whyte@dc.gov).

• 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.

  

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:  https://dds.dc.gov/page/dds-covid-19-community-and-provider-forums, 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 tiffani.johnson@dc.gov.

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.

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:

https://dhcf.dc.gov/medicaid-renewal

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 (winslow.woodland@dc.gov), 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 Charlisa.Payne2@dc.gov to get the invitation) tomorrow, May 26, at noon.  Come with your questions!

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

IT'S BUDGET TIME!

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 – https://cfo.dc.gov/node/1651111 - 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:  https://vimeo.com/807610302.  It was a wonderful event!

Passing of Judy Heumann, Renowned Activist and First Director of DDS

The entire world is mourning the death of disability rights leader Judy Heumann, which happened two days ago, on March 4.  Here is AAPD's obituary covering her amazing and impactful career:  AAPD on passing of Judy Heumann.

In a couple of my blog posts in recent years, I called attention to her memoir, Being Heumann (Heumann at Politics and Prose) and to the film, "Crip Camp," celebrating the roots of her activism at Camp Jened (DDAM viewing of "Crip Camp").  

But besides her national and international accomplishments, Judy Heumann played an important role at the local level, reorienting DC's disability services and pointing the way toward the future as the first director of DC's Department on Disability Services (DDS).  This doesn't usually get as much attention as her many other achievements, but for us it was hugely important.  

Heumann's passing in Developmental Disabilities Awareness Month (DDAM) gives us an opportunity to celebrate her essential role in setting DC on the path toward inclusion and autonomy for DC's disabled residents. There won't be another one like her anytime soon.

Information about her March 8 memorial service (in-person and online) is here: https://judithheumann.com/memorial-service-honoring-the-life-of-judy-heumann/.

February Performance Hearing on DC DDS

In principle, performance review hearings are about looking back – but in reality, they represent the first opportunity that advocates have to weigh in on the upcoming budget season.  That was very much the case on February 16, when advocates turned out to testify before the DC council’s Facilities and Family Services committee on the newly formed Mayor’s Office of Deaf, DeafBlind, and Hard of Hearing (MoDDHH), the Office of Disability Rights (ODR), and the Department on Disability Services (DDS).  As has usually been the case, DDS came last, but unlike most years, the hearing, which began around 2:30, ran until close to 8 p.m. by the time the committee chair, Janeese Lewis-George (Ward 4), had completed her questioning of Andy Reese.  My focus here is on DDS, although there was a great deal of interesting discussion with respect to MoDDHH and ODR, as well.

I shared my February 16 testimony in an earlier blog post, but it will be well worth your while to watch advocates’ testimony, some of it, from Project ACTION! members, about 35 minutes (35:00:00) from the beginning of the hearing (video of Feb 16 performance hearing), and the rest beginning a little before minute 3:20:00 of the video.  As always, the Q and A with Andy (5:07:00 of the video) was especially interesting in setting the stage for further discussion on the DDS budget for FY 2024 (beginning October 1 of this year).  In general, I was impressed that Lewis-George and her staff had really done their homework before the hearing.  She asked very good questions and saw important connections to the work of other agencies and council committees.  Here are some highlights (see organizations and terminology page for any unfamiliar terms):

• Sandy Bernstein of DRDC and other advocates had raised the issue of DDS delays in establishing people’s eligibility and getting services underway since the DDERAA came into effect in October. Although Andy Reese cited multiple reasons for these slowdowns, Lewis-George was adamant that DDS must find a ways to speed up the process.   
• Lewis-George picked up on advocates’ calls for the DC government to become a model employer of people with disabilities. She asked about existing models (the Georgetown UCEDD is leading the charge in studying options), asked about RSA’s role, and pushed Reese to hold other DC agencies accountable for setting hiring goals and creating career paths. 
• Many advocates called attention to the fact that people receiving residential supports from DDS receive a flat $100 monthly personal needs allowance that has not been raised to keep up with inflation since 2007.  Lewis-George asked Reese what was being done about this, and he said we first will need to see whether the mayor puts money into her budget to cover the cost, after which it will be up to the DC council.  
• There was significant attention to the need for better on-the-ground collaboration between DDS and DBH, since an increasing number of people served have dual diagnoses, and for DDS to have a better understanding than is sometimes demonstrated about the nature of DBH services and supports.  Although Reese said there are regular meetings with DBH at the management level, Lewis-George encouraged him to ensure this translates into peoples’ support experience.
• Advocates also called attention to DDA staffing shortages and the need to ensure prompt and complete funding of wage increases for DSP staff.

This year has been a turning point for DDS, and the revision in eligibility requirements brought on by passage of the DDERAA will require shifts in the response by DDS and its provider agencies to the people they serve.  You will have another opportunity to weigh in with testimony on how DDS budget resources should be used in FY 2024, at the DDS budget hearing March 29, 2023. You should be able to sign up soon, at https://janeeseward4.com/testify/.  Make sure you do it!

My February 16 Testimony

 

TESTIMONY BY CAROL A. GRIGSBY BEFORE THE COMMITTEE ON FACILITIES AND FAMILY SERVICES ON THE DEPARTMENT ON DISABILITY SERVICES, FEB 16, 2023

 Madame Chair and other councilmembers, thank you for allowing me to appear today before the newly formed Committee on Facilities and Family Services.  The DC community of disability advocates has had a fruitful relationship with the Committee on Human Services in recent years, and we look forward to the same constructive relationship with this committee.

 My name is Carol Grigsby. My son has received long-term disability supports through DDS since 2014, and in that same year I began my blog, DDinWDC (https://www.DDinWDC.com), in which I continue to cover key issues affecting people with developmental disabilities and their families.  I rotated off DC’s federally-mandated Developmental Disabilities Council in December, but during my tenure as DDC chair and then as advocacy co-chair, I was proud, with other advocates, to achieve successful passage of the historic Developmental Disability Eligibility Reform Amendment Act, among other important initiatives.  You are hearing today from other advocates who are tracking implementation of The DDERAA, whose intent is to ensure essential services for all those who need them.  In my limited time, I will focus on three pressing issues that directly affect the welfare of my own son and others now receiving or about to receive long-term supports from DDS’s Developmental Disabilities Administration: 

-          The effects of the pandemic, coupled with the narrowing of the gap between DC’s minimum wage and living wage, have led to significant staffing shortages – 23% on average - among DC’s disability support providers.  Direct support professionals who remain on the job are drastically overburdened.  Please heed today’s testimony by Ian Paregol from the Coalition of Disability Service Providers with respect to the need for urgent and full implementation of the Direct Support Professional Payment Rate Act

  As the pandemic emergency winds down, DDS and providers are focused on reopening day programs to get people back out into the community.  However, this moment also provides an opportunity for DC as a whole to place enhanced emphasis on employment of people with disabilities with the workplace supports they need.  The DC government needs to start by setting an example for private businesses, by becoming a model employer of disabled people in its own hiring practices.  Not only DCHR, but also DCPL, should be dedicated to this goal. 

-           People receiving residential supports from DDS have received a flat $100 monthly personal needs allowance since 2007 – with no cost-of-living allowance, or COLA.  A decision last month provides for a COLA to be applied to the personal needs allowance for people in intermediate care facilities and nursing homes, but in order to apply a COLA for people in supported living, such as my son, or in community residences, there must be explicit action as part of the budget process.  Year-on-year erosion in people’s personal allowance must not be allowed to continue, and we look to you to help remedy this injustice.

I would not be in a position to advocate as I do if my son were not receiving DDS supports, and I would like to thank Andy Reese, Winslow Woodland, my son’s service coordinator and others in DDS for continuing to pursue improvements in quality control, DDA/RSA collaboration, and other initiatives to achieve more meaningful inclusion of disabled people in our DC community.  Thank you.

 

SIGN UP BY FEBRUARY 13 FOR THE FEBRUARY 16 [VIRTUAL] DC COUNCIL HEARING!

When I circulated my new page about changes in the DC council last month (https://www.ddinwdc.com/p/members-of-d.html), I expected to follow up quickly with another blog post.  But my life hit some rocky times, and here I am six weeks into the New Year with an urgent event looming.  So let me be brief, and focus your attention on this week’s performance review hearing on DDS, ODR and the new Mayor’s Office of Deaf, DeafBlind and Hard of Hearing (MODDHH), February 16 at 2 p.m. via Zoom.  (This page - https://www.ddinwdc.com/p/blog-page.html - tells you about key terminology and organizations in the DC disability world.)  Each speaker will have 3 minutes to speak, but you can submit written testimony in addition.

SIGN UP HERE, BY TOMORROW, FEBRUARY 13 TO TESTIFY "IN PERSON" (via ZOOM) ON FEBRUARY 16:  https://docs.google.com/forms/d/e/1FAIpQLScxEOds_QVzkjURJa6GK3eW6s1Don1Em54nVd2KA-90gREgQw/viewform

My focus here is on DDS.  This hearing is especially important because the new chair, Councilmember Janeese Lewis-George, and many others on the Committee on Facilities and Family Services (CoFFS), are relatively new to disability issues, as are many committee staff (see https://www.ddinwdc.com/p/members-of-d.html).  As you prepare your testimony (contact Alison Whyte at the Developmental Disabilities Council - Alison Whyte (alison.whyte@dc.gov if you need help), think about these issues:

 -          What has been your experience with DDS’ intake office, and getting services underway, since new eligibility criteria for DDS long-term supports went into effect on October 1?

 -          Are you or your family member feeling the effects of the significant staffing vacancies providers are experiencing?  Do you think higher wages for direct support professionals, sooner rather than later, could improve this situation?

 -          Do you want to see annual cost-of-living increases in the personal needs allowance to keep up with inflation?  (People receiving residential supports from DDS currently get a flat $100 monthly personal needs allowance, an amount that has not changed in 15 years.)

 -          Are you satisfied with supports being provided by DDS (RSA or DDA) to help people find jobs, keep their jobs, and thrive in their jobs?  Would you like to see the DC government itself become a model employer of people with disabilities to set the tone for private employers?

 -          Do you or your family member feel ready to participate in day services and to re-engage in the community now that the covid emergency is formally nearing an end?

These are some issues receiving attention from DC advocates at this time - you may have others you’d like to address.  What’s important is for Councilmember Lewis-George and others on the council to know we’re here, interested and engaged.  SIGN UP! https://docs.google.com/forms/d/e/1FAIpQLScxEOds_QVzkjURJa6GK3eW6s1Don1Em54nVd2KA-90gREgQw/viewform