Tuesday, June 26, 2018

Promise and Reality

The Supporting Families Community of Practice meeting on June 14 focused on explaining new law B22-0154, The Disability Services Reform Amendment Act of 2018.  Materials from that meeting - on Supported Decision Making, the end of involuntary civil commitment, and plans for a DDS complaint process - will soon be posted to the D.C. Department on Disability Services Facebook page and the DDS website (https://dds.dc.gov/node/1053172).  As he usually does – and bravo for him - DDS director Andy Reese was there to answer questions over lunchtime, and Acting DDA deputy Winslow Woodland got on the phone afterward to hear people’s concerns.  Both of them were receptive, but many of the issues raised had come up before – an indication that the day-to-day reality of working with DDS often does not live up to the promise, even when concerns have been raised to supervisors and senior managers.  This is ISP season for many who are receiving waiver supports, providing many such reminders:

-          Scheduling.  On June 14 several of us raised with Andy the consistent problems and energy involved with getting meetings planned around the needs of the person being supported.  While everyone can understand unavoidable emergency reschedulings, the situations cited resulted from a lack of adequate forward planning.  Is this consistent with person-centered thinking?

-          New ISP format and procedures.  Although the new ISP format had been promised for some time, since it was finalized DDS has put little effort into introducing people and families to the new ISP format and procedures.  Apparently there’s a lot of internal confusion as well:  we’ve been given any number of reasons since my son’s early-June ISP meeting why the draft ISP can’t be shared with us, and now, with a June 29 deadline, we’re still waiting.  Does this seem consistent with the priority DDS says it wants to place on Supported Decision Making and family support?

-          Just sign it.  It’s normal to sign a variety of documents at ISP meetings, and some are indeed quite routine.  However, making sure that people understand what they’re signing, and why, too often gets lost in the process. In fact, it’s not uncommon for people to be asked to sign blank documents that DDS fills out afterward.  When I asked for clarification on two documents this year, I was told they were the same as last year and must be signed promptly in order to get the ISP – we complied without getting our answers, and are still (see above) waiting for the ISP.  At a time when DDS is touting personal rights, does it really mean to tell people and their supporters that they should simply sign documents without looking at them?

The quality of day-to-day interactions with DDS matters a lot to those it supports, and people should be able to expect that their needs and concerns will be taken seriously.  On this front, progress still needs to be made.  This is true of bigger issues as well, and I'll write more about those in weeks to come.

Thursday, May 24, 2018

Focusing on the Future

The Disability Services Reform Amendment Act of 2018 - B22-0154 – is now the law.  It was a hard slog, and now comes the implementation - also hard, but so important!  That’s why the next Supporting Families Community of Practice (SF CoP) is going to focus on what B22-0154 is going to mean - for the new DDS complaint system and for Supported Decision Making.  The meeting will take place June 14, 9:30 to 3:30, at 441 4th St NW (One Judiciary Square).  Plan to be there, or call in, if you’ve been reading here about the bill and want to understand what it’s really going to mean for you or your family member.  Here are the details:  https://tinyurl.com/ya7fet2m.

But we can’t stop folks!  With this big win behind us, it’s time to set the advocacy agenda for further improvement in the lives of citizens with developmental disabilities in our nation’s capital.  I wrote last time about the talking points the D.C. constituency pulled together at the Disability Policy Seminar in April and our meetings afterward at the Wilson Building.  That was a great start, but advocacy is only really effective if folks pull together around a shared set of objectives.  Setting priorities, then forging a game plan, is hard but necessary, and that’s where my efforts are going to be directed over the next few months.

But in the meantime, a couple of public service announcements!

-          DRDC (see my page on Acronyms and Organizations if you don’t know what this is!) needs your help on primary day, June 19, to monitor how well polling places are doing at ensuring they’re accessible and welcoming to people with disabilities.  Please email Kristina Majewski, KMajewski@uls-dc.org, if you can visit one or two polling places to do this important work.

-          The Developmental Disabilities Council is launching a new initiative – Next Chapter Book Clubs (https://nextchapterbookclub.org) – in D.C. The goal is to get a bunch of inclusive, multi-age book clubs going across the city – socializing and conversation as important (more so!) than the reading, and there will be plenty of support.  Contact Sudie Johnson (sudie.johnson@dc.gov) if you’re interested or can help with sponsorship. 
Find something you can get involved in – it’s on all of us to keep making the future a brighter and better place for our community.

Wednesday, April 25, 2018

Setting Goals and Aiming High

Well.  Some of you thought I had gone to sleep, and I’ll admit I’ve been quiet.  All I can say is that life can sometimes turn your best-laid plans on their head, and that’s been part of my reality since my last blog post.  

This week surely woke me up though, as I represented the D.C. Developmental Disabilities Council, along with executive director Alison Whyte (https://ddc.dc.gov/biography/alison-whyte), at the 2018 national Disability Policy Seminar (http://disabilitypolicyseminar.org).  Among others from D.C., we were joined by representatives from Project Action!, D.C.’s prominent self-advocates group, including co-president Thelma Green, pictured here with Alison at the conference:

As always, the DPS was an outstanding opportunity to celebrate the successes of the broader disability community over the past year – including heading off a wholesale rollback of the Affordable Care Act – and to catch up on the current state of proposed initiatives and legislation likely to affect people with disabilities over the coming year.  The main purpose of the DPS each year is to prepare state delegations with the information they need to go up on the Hill and lobby their senators and representatives on Day 3.  This focus always poses a bit of a challenge for those of us living in D.C. since we don’t have voting representation in Congress.  Today, however, a group of us including Alison and myself, Thelma and another Project Action! self-advocate (who also happens to be my son!), along with Damian Miller from the Arc of D.C. and D.C. Advocacy Partner Caren Kirkland, went up to the Wilson Building to meet with councilmember Brianne Nadeau (Ward 1, chair of the human services committee) and with Jessica Giles from councilmember Grosso’s office to discuss issues which D.C. attendees at the DPS had identified as priorities.  Topics we covered in particular included:
-          creating viable and inclusive employment opportunities as stepping stones into D.C. government employment;
-          addressing housing limitations including availability, affordability, and accessibility;
-          improving and expanding alternatives to 911 for people with disabilities who are in crisis, and strengthening MPD awareness through more effective partnership with DDS; and
-          expanding DDA waiver supports beyond intellectual disability, to include people with autism and other developmental disabilities.

Project Action! and other advocates have gone to the Wilson Building many times to speak with the council, but with the recent win in gaining passage of B22-0154 (the Disability Services Reform Amendment Act of 2018), the way is now clear to developing a shared advocacy agenda for the next leap forward.  We were also reminded today that it’s important to approach councilmembers who are not on the human services committee and who may need to hear from advocates in order to understand the impact of inclusion in the areas they oversee.  So we’ll be targeting some different councilmembers on the next visit!

Friday, March 23, 2018

Mayor Bowser Signs Historic Legislation

I was proud to stand with Mayor Muriel Bowser and other advocates on March 20 as she celebrated Developmental Disabilities Awareness Month by signing the Disability Services Reform Amendment Act of 2018 (http://lims.dccouncil.us/Legislation/B22-0154?FromSearchResults=true).  Deputy Mayor HyeSook Chung joined her as well, staying for amazing performances, interviews and proclamations at the “See Me for Me” event which took place at the headquarters of the Department on Disability Services.  Read more about this important event at https://tinyurl.com/ybuqzxbn and https://tinyurl.com/yacl7lmq.  I hope that DDS will post pictures of some of the most memorable moments to its website.

If you testified, or wrote a single email or letter to the council as the DSRAA bill (B22-0154) was considered over the past several years, you played a key role as well.  So congratulate yourself on a job well done!

Friday, March 16, 2018


(Unless you were there!) You missed an amazing evening at Lucky Strike on March 8 with Quality Trust and its many supporters!  But you can mark your calendar now for the annual QT gala, at District Winery on July 29, 6:30 P.M.

Sunday, March 11, 2018

Planning Your Financial Future

On February 13 (“Let’s Keep It Moving”), I wrote the following:

Looking ahead, March 9 is the next meeting of D.C.’s Supporting Families Community of Practice (https://dds.dc.gov/event/state-team-meeting-supporting-families-community-practice-friday-march-9-2018).  You’ll remember that there were two briefings last year about ABLE accounts, one on ABLE in general and another about the newly-created D.C. ABLE account.  I wrote about these in my September 18 blog post, “News, News, News,” and then on October 17 in “Thinking About ABLE,” both of which you can find by clicking on “ABLE” in the Search box over to the right.  It was clear from those meetings that it would help to have some more general briefings on budget basics and responsible money management, so the upcoming meeting will focus on that.  I know that Emily Price (emily.price@dc.gov) will make sure there is a call-in option for those who can’t make it to DDS headquarters (250 E St. SW, next to the Federal Center SW metro station).

I was proud on Friday to kick off this meeting, which mainly revolved around two presentations, one by Linda Stroman of Capital Area Asset Builders

(http://www.caab.org/en) on personal budgeting, and the other by Elizabeth Jennings at the National Disability Institute (https://www.realeconomicimpact.org

on the impact of federal benefits like SSI and SSDI on your personal finance.  Both were exceptional presentations, and you should keep your eye on this website:

where the Power Point presentations and other resources will be posted, I’m sure, as soon as Emily Price (Emily.price@dc.gov) can catch her breath!

Tuesday, February 27, 2018

A Passing Grade for DDS

I shared my written testimony with the Council yesterday, text below.  You have until tomorrow to do the same -

Testimony by Carol A. Grigsby
D.C. Council Human Services Committee
Performance Review of Department on Disability Services
February 2018

Councilmember Nadeau and other members of the Human Services Committee –

My name is Carol Grigsby.  I serve on the D.C. State Council on Developmental Disabilities as well as on the board of the Quality Trust for Individuals with Disabilities, and I blog regularly on issues affecting D.C. citizens with developmental disabilities at https://DDinWDC.blogspot.com.  My son receives waiver supports in D.C., is active in Project Action!, and, I hope, will someday soon be willing to testify before you himself.

I would first like to thank, and congratulate, the committee and the council for having given unanimous support to B22-0154, the Disability Services Reform Amendment Act.  This reform was long overdue, and along with closure of the Evans case, the lifting of the requirement for civil commitment demonstrates that the Department on Disability Services no longer requires court oversight in order to do the right thing for persons with developmental disabilities.  It is now incumbent on DDS and those of us who advise and advocate alongside the agency to ensure that people such as my son receive the right level and type of support from those who care for them, and also have solid recourse when, for whatever reason, the quality of their services goes awry.  I look forward to working with others to see that this is the case.

As I have said in earlier testimony, I fully support the establishment under this bill of Supported Decision Making agreements as a new and less restrictive alternative to guardianship.  However, the availability of SDM agreements must not become grounds to deny those who wish to do so the right to sign powers of attorney, as you or I can.  As Andy Reese stated in his testimony, “People with disabilities can make their own decisions and they have an inherent human right to do so.” This should include the decision to conclude powers of attorney.

With respect to the recent realignment of the Department on Disability Services, I understand and fundamentally support the director’s aim of streamlining and consolidating DDA and RSA shared services.  However, in doing research for my blog I heard a number of concerns that will deserve careful attention in the months to come:

-          The exit of a number of experienced individuals, particularly though not exclusively from the incident management unit (some also noted that the exit of qualified women from influential positions appears to be a step away from diversity)
-          The consolidation of the DDS intake unit under the RSA deputy director rather than centrally under the DDS director or reporting to the DDA deputy (unusual given that determining waiver eligibility is a more time-consuming and complex process than is eligibility for vocational rehabilitation services)
-          The need to recruit promptly for the DDA and Quality Performance Management deputy director positions (as was noted in the hearing as well) in order to ensure stability and leadership at the highest levels of the organization.

I hope that the council will keep close watch on these and other aspects of the realignment to ensure it achieves its desired goals without creating others.

In my testimony last year I wrote at length about the progress that DDS still needs to make in assisting people to achieve competitive employment.  This remains a challenge, as my son’s experience over the past year has continued to demonstrate.  DDS is moving in the right direction and showing incremental progress, but much more rapid movement is needed in identifying partnerships, incentives and other creative and customized approaches to expand employment opportunities for people with developmental disabilities in D.C. – including part-time opportunities where appropriate. There is still much to do in order to make other parts of the D.C. government join in this effort.  My son is already 25, and for him time is slipping away to get a foothold in the world of work.

Thank you for your attention to my testimony, and for the committee’s conscientious oversight of DDS performance as we head into the budget season.

Wednesday, February 21, 2018

Follow-through is Everything, Not Just in the Olympics!

The Valentine’s Day hearing before the Human Services Committee on performance by the D.C. Office on Disability Rights and the Department on Disability Services over the past year took place as scheduled, and you can see it here in full:  http://dc.granicus.com/MediaPlayer.php?view_id=2&clip_id=4349.    The DDS review was dominated by the recent passage of bill B22-0154, and self-advocates in particular turned out to express thanks to the council for its passage of the Disability Services Reform Amendment Act. There also was plenty of discussion about implementing the bill, in particular with respect to the grievance process it establishes, and DDS announced it would be working on this with the advisory group that helped with the recently-approved state transition plan and waiver amendments.  DDS also will be launching, along with advocacy organizations, a process of education and outreach so people will be aware of new rights and procedures under the bill.  DDS director Andy Reese’s testimony addressing this and other subjects, including the recent management reorganization, is here
and can also be viewed in the last 45 minutes of the video, along with Q and A.  Here too is the testimony of Morgan Whitlatch from the Quality Trust for Individuals with Disabilities:

Another topic which received attention in the hearing was the impact of broader D.C. workforce initiatives on the financial sustainability of human services agencies.  These are the folks who hire the Direct Support Professionals providing support to D.C. citizens with disabilities, so the financial viability and livelihoods of these organizations and people are essential.  Ian Paregol, director of the DC Coalition of Disability Service Providers (http://dc-coalition.org/2016/02/19/welcome) gave an excellent overview of the issues (https://tinyurl.com/y8wg5qt3), as did follow-up testimony by RCM (https://tinyurl.com/ya6v8yyu) and NCC (https://tinyurl.com/yaaw6n33), two of the Coalition’s member organizations.  Nadeau announced that the council is setting up a working group to address these and other workforce issues, which also affect care for seniors in D.C.

After reading this post, if you’re inspired to express yourself, the deadline for submitting written testimony to the committee (humanservices@dccouncil.us) is February 28, a week from today.  Keep it short if you want, but let the council know there are folks who care about these issues as they prepare to consider the mayor’s budget for fiscal year 2019 later this spring.

Councilmember Nadeau at Project Action!

I mentioned in my last post that the chair of the council's Human Services Committee, Councilmember Nadeau (Ward 1), attended the Project Action! meeting on February 10.  Here's the proof!

Tuesday, February 13, 2018

Let's Keep It Moving

Today it’s time for some updates because there’s such a lot happening.

The Project Action! (https://www.dcqualitytrust.org/families/join-project-action) meeting on Saturday was a great celebration, as I’d expected.  Self-advocates and others really had put their shoulders to the wheel to get B22-0154 through the council, and the unanimous vote was an amazing accomplishment.  What made Saturday’s meeting even more special, though, was that Ward 1 council member Brianne Nadeau, who chairs the Human Services Committee, showed up with her baby daughter to celebrate along with us and to hear from Project Action! members about other concerns they have moving forward.  With respect to the bill itself, we were also reminded – as if we could forget! – that the U.S. Congress has to get its 30-day review of OUR law before the mayor can sign it.

Next up:  Tomorrow, Valentine’s Day, February 14, will be the performance review of the Department on Disability Services (also for the Office on Disability Rights) before the Nadeau committee.  It starts at 10:00, in room 500 of the Wilson Building at 1350 Pennsylvania Avenue NW.  This year I won’t be testifying in person but I do plan to attend so I can hear what others are saying, in particular about the DDS reorganization.  The committee hearings are always available to watch live or on archived video afterward (http://dccouncil.us/committees), and it’s still possible to submit testimony for a few days after the hearing has taken place.  So keep your eye on this space and I’ll let you know how long you’ve got to submit your written testimony!  Sometime in April the committee will have another hearing to consider the mayor’s budget for DDS.

Another big item on Saturday’s agenda was bill H.R. 620, which aims to weaken the Americans with Disabilities Act and will be considered by the U.S. House of Representatives this week:

Particularly for those of my readers who have a voting representative in the U.S. House, CONTACT YOUR REPRESENTATIVE AND TELL THEM TO VOTE NO ON H.R. 360!  Do it for all U.S. citizens with disabilities, including those in D.C.!

Looking ahead, March 9 is the next meeting of D.C.’s Supporting Families Community of Practice (https://dds.dc.gov/event/state-team-meeting-supporting-families-community-practice-friday-march-9-2018).  You’ll remember that there were two briefings last year about ABLE accounts, one on ABLE in general and another about the newly-created D.C. ABLE account.  I wrote about these in my September 18 blog post, “News, News, News,” and then on October 17 in “Thinking About ABLE,” both of which you can find by clicking on “ABLE” in the Search box over to the right.  It was clear from those meetings that it would help to have some more general briefings on budget basics and responsible money management, so the upcoming meeting will focus on that.  I know that Emily Price (emily.price@dc.gov) will make sure there is a call-in option for those who can’t make it to DDS headquarters (250 E St. SW, next to the Federal Center SW metro station).

Many ways to get involved and keep improving life for our citizens with developmental disabilities in D.C. – take your pick!