Wednesday, October 19, 2016

Come Together

On Saturday I went directly from Project Action!’s monthly meeting to the DC Autism Society's annual luncheon.  Attending these events back-to-back impressed on me how important it is for local groups to make common cause on key issues affecting people with developmental disabilities in D.C.  Here are two whose time has come:

-          At the D.C. Autism Society (DCASA) meeting a couple of weeks ago, a major topic of conversation was the intersection of race and disability in interactions with the police.  Then I went to Project Action! on Saturday and learned that several people had recently attended a workshop sponsored by the Washington Peace Center ( on the same issue.  The Autistic Self-Advocacy Network (ASAN), a national group with D.C. roots, also has a particular interest in this issue.  So it seems to me it’s time for members of these groups to put their heads together and develop an action plan for advocacy and outreach with the MPD.  I mentioned this to folks at both the Project Action! meeting and the DCASA luncheon, and I hope someone will pick up on it.  I’m happy to connect the right people to get this discussion going if that will help.

-           At Saturday’s Project Action! meeting, DDS acting director Andy Reese talked about weekly meetings taking place to consider amendments to the DDA-administered Medicaid waiver.  I asked him whether expanding waiver services to people with autism and other developmental disabilities who do not meet the IQ threshold was also on the table.  He said it can be part of this ongoing discussion.  Access to Medicaid waiver services is critically important for those who require supports, and it’s time for eligibility to be broadened.  The last effort foundered almost six years ago, and that’s six years too many.  I’d like to see Project Action!, DCASA and others concerned with bringing greater justice for those with disabilities in our city to partner in support of eligibility expansion.  Now’s the time, and if it needs legislation, then let’s advocate for that too.  Let’s help the DDS director-to-be make his mark on disability services in D.C. as his predecessor Laura Nuss did.

The political environment is ripe for us to make a difference on these issues.  Let’s come together and do it.  

Thursday, October 13, 2016

Agents of Change

Fall is the time when activities start back up and many of us reassess our lives – I’ve always found this a more fruitful time for making resolutions than the New Year, myself.  In D.C. things are getting busy, too, and I hope you’ll sit up and take notice.

Today was the fall team meeting of the Supporting Families Community of Practice (SF CoP).  In its fifth year now, this has served as an important forum for D.C. practitioners, parents, persons with disabilities and others to provide feedback, develop new initiatives, and brainstorm how to make D.C. a more disability-inclusive community.  Great progress has been made, and to my mind, this has also proven how essential the State Office of Disability Administration has proven to be.  As the oversight and policy arm of DDS, the SODA - through initiatives like the SF CoP - has guided development of vision and direction for District-wide disability initiatives, and the SF CoP in particular has allowed us to dream together about an altogether different future.  If you aren’t already on the SF CoP bandwagon, then contact Alison Whyte ( or Rhonda White ( and climb aboard.

This Saturday, October 15, will be the next Project Action! meeting, 10-12 at the Kennedy School (801 Buchanan St. NE).   This is an organization by and for self-advocates, so they can share expertise about individual advocacy as well as make themselves heard on policies and legislation that affect their lives.  Project Action! has lobbied strenuously for the Citizens with Intellectual Disabilities Civil Rights Restoration Act, and even though HHS committee chair Yvette Alexander seems ready to let that bill to die in committee (for shame!), this group scored a recent success by getting the council to reinstate partial funding for Transport DC.  Bravo!  This organization gets more active every day but needs new folks – how about some of the younger ones?  It all starts with showing up.

Also on Saturday, the annual luncheon of the D.C. Autism Society of America chapter ( will take place.  I’ve written before about DCASA and the families who, so far ahead of the curve, banded together to ensure their family members would have not only housing and supports, but a community and social life to follow them through their lifespan.  Over the summer I visited their camp outside Frederick, and a couple of weeks ago I attended one of their regular meetings at which they were exploring opportunities to partner with the Autistic Self-Advocacy Network.  If you’re concerned about the future for people with autism in the District (Reminder! No autism supports in DC if you’re over the IQ cutoff!), then for heaven’s sake reach out and get involved with DCASA.

A couple of other tidbits:

-          Take a look at the new five-year plan for D.C.’s Developmental Disabilities Council, which has some fabulous new initiatives oriented toward employment and advocacy opportunities:
-          Plan to attend or tune in on Thursday 10/20 when the HHS committee of the D.C. council holds a public roundtable to consider Andy Reese’s nomination to head DDS (he’s only acting director now):

And one more thing!  As you know if you’ve been reading regularly, the Quality Trust for Individuals with Disabilities was set up in 2001 by court order to monitor the safety and appropriateness of the supports folks were receiving from DDS, and to advocate for improvements in those services.  Fifteen years on, QT is still playing this crucial role while also developing a growing national footprint through its work on Supported Decision Making (  Out of appreciation for the help QT had provided my family, I joined the board two years ago, and now I understand even better how essential and unique this organization is.   We’re looking for new folks to fill some key gaps on the board – so think about it:

I know we’re all tired from the individual advocacy we do, day in day out.  But it takes more systematic, shared and sustained effort to make change happen. I hope you'll choose to be a part of it.