Friday, March 29, 2019

Taking the Long View

This past Wednesday, March 27, was a rousing celebration of Project Action!’s 30th anniversary ( and Developmental Disabilities Awareness Month (  Representatives from Mayor Bowser’s administration and from Councilmember Brianne Nadeau’s office joined a crowd of pumped-up disability advocates at the Department on Disability Services to celebrate and to remind ourselves how necessary it is to take the long view – a helpful perspective this week when the decision to defund, then refund, Special Olympics has been so much in the news:

This backdrop made the Special Olympics video we viewed ( that much more compelling.  The Thorntons have so much to teach all of us, but this time around it wasn’t just Donna and Ricardo doing the teaching, but also Ricardo’s late sister Earline, who died while the three were still at Forest Haven and was buried on the grounds o that institution in Laurel, Maryland.  On Wednesday DDS director Andy Reese announced that DDS will name a conference room in her honor as an ongoing legacy.  My imperfect picture captures that announcement:

Many representatives of Project Action! were at the event, where the organization handed out tokens of appreciation to a number of their ongoing supporters.  There were many touching tributes, but I especially liked this statement by Alison Whyte, the executive director of the D.C. Developmental Disabilities Council (I may be biased as the new chair!):

As our community faces upcoming challenges (budget, housing…more to come on those) it’s great, and healthy, to stop and celebrate.

Carol Grigsby dedicates herself to information sharing and advocacy on issues affecting her own son and other citizens with developmental disabilities in Washington, D.C.  She is currently chair of D.C.'s State Council on Developmental Disabilities, as well as serving on the board of the Quality Trust for Individuals with Disabilities and on the Family Support Council of D.C.'s Department on Disability Services.  She retired from the federal government’s senior executive service in 2011 and has lived in D.C. since 1978.  The views in are her own.

Monday, March 18, 2019

Housing Events and More during Developmental Disabilities Month

The next two weeks provide opportunities to celebrate as well as opportunities to advocate.  Do both!

Wednesday evenings this week and next present important opportunities to celebrate Developmental Disabilities Awareness Month (  From the event website at

March 20: Loving -- Heartbreak, Happily Ever-Afters, and Everything In-between; 6 – 8 pm @True Reformer Bldg/Lankford Aud., 1200 U St., NW
A lively discussion is sure to happen as panelists with disabilities share their experiences about building and maintaining healthy, intimate relationships. Clips of Profoundly Normal will be shown to spark conversation. Based on the life of Ricardo and Donna Thornton, this made-for-television movie tells the story of their journey from Forest Haven, the District's former institution for people with developmental disabilities, to husband and wife, to parenthood. Hosted by DDS and the Developmental Disabilities Council (DDC) this event is free and open to the public. For more information, contact

March 27: Celebrating 30 Years of Self-Advocacy
4 – 7 pm @ the Department on Disability Services, 250 E St., SW

This event highlights the work and honors the members of Project ACTION! for their commitment and dedication to disability rights. Project ACTION! is a coalition of self-advocates and advocacy organizations throughout the DC metropolitan region. It started in 1989 when a small group of people with developmental disabilities began meeting monthly at the Lt. Joseph P. Kennedy Institute to discuss issues impacting their lives and goals they wished to achieve. It is now an independent 501 (c) 3, supporting people with disabilities to become national self-advocates with members serving on various disability organization boards and committees. For more information, contact

But in between those two celebratory events, take in one of these important follow-up sessions on the proposed DDS housing policies that I’ve covered in several recent blog posts (, search “housing”):

Monday, March 25: HCBS (D.C. Medicaid waiver) meeting
2-4 pm @ the Department on Disability Services, 250 E St, SW
(with pre-meeting for self-advocates from 1-2 pm) OR

Wednesday, March 27: Special Session on Housing Policies
1-3 pm, Ora Glover Meeting Room #3
1800 Good Hope Road, S.E.

Make sure you come to at least one of these because these policies are going to affect greatly people with disabilities who receive residential supports in D.C.  DDS has hosted a number of “listening sessions,” at Family Support Council (, Supporting Families (, Project Action! ( and other meetings.  Now I hope we’ll be getting answers from DDS to the many questions advocates have raised in earlier sessions.

Finally, what a great time we had at Quality Trust’s Better Together reception last week!  Thanks to Phyllis Holton for arranging such a great gathering, and thanks to everyone who came out and supported this essential organization.  We’ll see you at the summer gala!

And stay tuned for Autism Awareness/Acceptance Month ( in April!

Tuesday, March 5, 2019

Two ways to invest in the future

Before I dive in, I’d like to extend personal thanks to Winslow Woodland and Erin Leveton.  You both know why.

And now down to business.  By now, I’m assuming you’ve sent in your testimony to the Human Services Committee ( with respect to DDS performance – whatever you have to say, positive or negative or somewhere in between – or if you’d like to put in a plug for expanding services beyond intellectual disabilities – NOW’S THE TIME, BY MARCH 7.  It can affect the DDS budget for next year.  Feel free to read my last blog post if you’d like some ideas!

But there are two other immediate ways for you to invest in the future of people you know and support in D.C.

     On Friday, March 8, from 9:30 to 3:00, you can attend all or part of the Supporting Families Community of Practice meeting at DDS (250 E St SW, Federal Center SW metro), which this time around will offer opportunities to learn more about Supported Decision Making (and how to make it real in your life.  Contact Emily Price ( for more information.  The Family Support Council will also be taking up SDM in a more detailed way at its upcoming meeting later in March, and Emily can tell you more about that too if you’re interested.

·        And on Tuesday, March 12, 4:30 to 7:00 kick back and have some fun at the Quality Trust Better Together Reception at Umaya Izakaya Restaurant, 733 10th Street, NW.  Buy tickets at  Yes, I’m on the QT board, but that’s because it plays a crucial role in providing ongoing monitoring, oversight and advocacy for people receiving services and supports from DDS.   QT often operates behind the scenes but it’s more important than you may realize.  So turn out on Tuesday night to give QT and the folks you care about your support, and have fun doing it.  I’ll be there, with my son – see you there!

I haven’t heard anything more about when DDS will host a special meeting or meetings on the draft housing and contribution to care policies that I’ve discussed in recent blog posts, but at the performance hearing on February 21 Andy Reese said that the new complaint system called for in the DSRAA (take a look at the page over to the right “Acronyms and Organizations” if you don’t know what this is) would be in place before these new policies are implemented, so that’s a good sign.  Watch this space for more news about an upcoming meeting on these policies (DDS feel free to post a comment!), and in the meantime, search “Housing” in the block to the right to read my recent blog posts about these policies.