Monday, December 19, 2016

Nearing the Start of a New Year

You may have noticed that I’ve been uncommonly quiet over the past few months – there have been a lot of distractions!  But it’s time to raise my head up again, and  I’ll start by catching up on important developments:

-          The biggest news is U.S. District Court Judge Huvelle’s finding on December 13 that D.C. is in full compliance with all requirements under the Evans court case.  A final hearing on January 10 is expected to bring the 40-year-old lawsuit to a close.  I wrote in these pages over two years ago (“Where We’ve Come From,” 9/25/14), “It’s truly the conclusion of the Evans case which will open the door to the possibility of real reform of the D.C. system.”  And here we (almost) are…more on this below.

-          Also big news is the fact that Andy Reese was confirmed by the council a month ago and is now the official (no longer acting) director of DDS.  Just after Thanksgiving he named a new deputy director for DDS/RSA (see my acronyms list over to the right!), Pamela Downing-Hosten, previously director of secondary transition for D.C. Public Schools.  Along with Jared Morris, deputy for DDS/DDA, the Department on Disability Services has its full leadership team in place, so they should be energized and ready to do great things in the New Year.  Incidentally, I’ve been impressed to see Andy attending each and every Project Action! meeting over recent months – an impressive sign of his dedication.

-          Although the significance may not be clear to all my readers, another very significant personnel transition will be Robert Dinerstein’s departure from the Quality Trust board of directors at the end of this month.  Bob was a major force in QT’s establishment and was chair of the board from QT’s incorporation in 2001 until last year.  He stayed on the board for an extra year, among other things to assist new chair Chase Phillips as he’s assumed the reins.  Bob will be greatly missed, but remains director of the Disability Rights Law Clinic at American University and will be an important resource and friend to the organization in years to come.

-          On December 21 (9:30 to 3:30), you’ll have the opportunity to take a breather between holiday shopping and final preparations by attending the final meeting of the Supporting Families Community of Practice.  It’s being held this time at the Georgetown University Center for Child and Human Development, 3300 Whitehaven Street NW, Suite 3300 (Wisconsin Avenue just north of Georgetown).  This will be an important stocktaking meeting, looking back at accomplishments and planning for the future.  Please contact Alison Whyte at DDS ( for more information.

-          In my last post just after the election, I spoke of the need to remind our president-elect about the full spectrum of the American populace he'll be leading when he is sworn in on January 20.  The Women’s March, which has now received a permit for January 21, represents a historic opportunity not just for women, but for all those who want to send a clear message of inclusion, to turn out in large numbers.

Two years ago today (“35 Years and Counting,” 12/19/14), I wrote about the hopeful reforms that were sidelined in 2010 when the council failed to take action on the Developmental Disabilities Reform Act, and that have remained hard to realize given the ongoing focus on bringing Evans to a close.  Ending civil commitment is one of those lagging reforms, and I’m sorry to have no happy update about the Citizens with Intellectual Disabilities Civil Rights Restoration Act (B-0385), which was never granted a hearing in the council and will have to be reintroduced next year.  The other crucial pending reform is expanding Medicaid waiver eligibility to those who do not meet the “intellectual disability” IQ cutoff but nevertheless need DDA supports.  More on this early in the year, and in the meantime, I wish you a warm and happy holiday season.

Wednesday, November 9, 2016

Where There is Hope

A few of my readers may be happy today, although I have a feeling most are feeling stunned, sad and scared, as I am.  It’s hard to feel upbeat about a president-elect who has mocked a person with a disability and bragged about assaulting women.  But as Hillary Clinton said in her speech this morning, we have to give Mr. Trump a chance to lead. 

What better way to show him the diversity of the country he will be leading than to make sure there are plenty of folks with disabilities – hey, especially WOMEN with disabilities – and disability rights supporters at his inauguration?  Not to protest – the time for that is past – but to witness.  If he intends really to change his tone and be a president for all the American people, he needs to know who we are.  I hope we can start talking about this, at tonight’s annual meeting of the Quality Trust, at Saturday’s Project Action! meeting, and at all our gatherings over the next ten weeks.  Put January 20 onto your calendar, now.

A little closer to home things may – may – be looking more hopeful.  I’ve written before about the Citizens with Intellectual Disabilities Civil Rights Restoration Act (click on the "Advocacy" label on the right), but to be honest I had lost hope that committee chair Yvette Alexander would take action.  Now I’m hearing rumors that she may be considering this bill as an important legacy she can leave as she rotates off the council.  I sincerely hope this rumor is true, for our community needs some good news over the coming weeks.  Councilmembers Alexander and McDuffie – step up and hold a hearing before Thanksgiving.  Give us something to celebrate in this unsettling season.

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.

Saturday, September 24, 2016

Live and Learn

As I did around this time last year, I want to use this near-anniversary of my blog to look back and take stock.  What are some of the lessons I’ve learned over the past two years, my son’s first two years receiving disability supports from DDA and my first two years writing this blog?

There are plenty of acronyms in this posting so check the Acronyms and Organizations page!

-          When I started this blog I thought I had a lot of answers, answers to questions that others must be asking about how the D.C. Medicaid-waiver system works and how to work that system.  I thought I was a trailblazer, but I was wrong.  A lot of people have come before me, and are alongside me now.  They’re just advocating in different ways.  I’ve also learned a lot from families who have more experience with RSA than with DDA.  So I’m humbler now, but still very proud and happy when I learn my blog has helped someone better understand their choices or motivated some new folks to speak out.

-          I began my blog believing Laura Nuss, then director of DDS, was dragging everyone – DDA staff, existing providers – into the 21st century kicking and screaming.  There was some truth to that, but it’s more complicated.  The more I understand about the way things work, the better I can see some of the other actors – DHCF, the mayor’s office, the council, and above all, the federal-level Center for Medicare and Medicaid Services – that constrain and drive many of DDS’s actions.  I’ve also gotten to know a lot of dedicated folks working inside DDS and various organizations, and many are highly motivated to do the right thing and push for improvements (some have family members with disabilities themselves).  So now I see not just a big puzzle, but a lot of jigsaw pieces.

-          This doesn’t mean that everyone is equally well intentioned, or that change isn’t needed.  Those who work closely with me know I’m very determined, demanding in fact, about where I see room for improvement.  I talk often with others about their perspectives as well.  Even with the progress of the past few years – and there has been a lot of progress - over and over again DDA demonstrates that the right hand doesn’t know what the left hand is doing, and this causes wasted effort and extra stress and strain for provider organizations that already are stretched thin.  And the providers have immense difficulties of their own, in particular with internal coordination – in part, though not totally, because of high staff turnover.

-          And speaking of turnover - I’ve also learned over the past couple of years that the world of disability services in this city can get pretty incestuous.  Even though I understand why it happens, it worries me a little each time that someone moves from a provider agency into DDS.  It makes me wonder whether they were lobbying for the job for a long while, and whether that colored their decisions and performance.  More broadly, sometimes I feel things get too “cozy” in our small, city-based system and I wish there were more organizations and individuals bringing independent voices to the table.

-          I try to be careful about this myself.  Once you “raise your hand” and start coming to meetings, advocating, and testifying, you start getting invited to every event and onto every board, committee or working group that’s formed.  There are a lot – a dizzying number - and although they’re all worthy efforts, the way they all relate to one another can be very unclear.  Beyond that, I weigh my interest in participating, advocating, and staying informed against the need to stay independent so I’m not seen as a mouthpiece for DDS.  Because, let’s face it, 90% of the time it’s DDS that’s convening all these groups and meetings.  This is my problem to resolve, but I hope I do a good enough job in this regard.

-          And then there’s me as a parent.  Because I am.  And quite a lot of the advocacy I’m doing day to day is personal, on behalf of my son.  I look for the right balance in that regard, too.  I look for the balance between advocating for him, and pushing him to advocate for himself.  I gauge where and when I should be involved directly and when I should be relying on his support agencies to step up - because, as we all know, we won’t always be here.  And what I’ve learned is that while DDS and providers are looking to be family-centered as well as person-centered nowadays, there isn’t yet a good system for how to make that real.  There are no natural entry points for family involvement in the ISP process and most documents are shared through electronic systems to which families don’t have access, so you just have to keep asking for hard copies and have your say the best you can.  It’s messy for everyone, even with the best of intentions.

And maybe that’s the thought I should end on. Like many others, I was until two years ago accustomed to school-based services under the IDEA.  The world of Medicaid waivers and vocational rehabilitation is indeed a completely different planet, and “messy” is the best adjective I can come up with.  But that’s for those getting supports, and for those who need but don’t get them the problem goes way beyond messy.  And that may be the most important lesson of all.

Monday, September 5, 2016

Can't Say I'm Surprised

I returned yesterday from a family vacation to the news that the director of D.C.’s Department on Disability Services has been named.  The new director is none other than Andy Reese, who has been interim director since Laura Nuss’s departure in early April.  Here’s the mayor’s press release:

This isn’t surprising news, of course, and it will assure continuity in DDS.  That’s good in some ways since any new director from outside D.C. would have had a very steep learning curve.  And Andy is a D.C. native with a lot of relevant experience, as the press release points out.  On the other hand, inside DDS his focus has been on RSA, and his prior work has mainly been with children and young adults.  This means he’ll need to put extra effort into getting on top of DDA and the Medicaid waiver, and issues affecting adults with disabilities in D.C. more generally.  I also hope that Andy will “warm up” in his public interactions, since he often has seemed more at ease with facts, numbers and other technicalities and not as comfortable relating to the people affected by RSA and DDA programs.   

Andy will have Jared (Morris, deputy director for DDA) and others inside DDA to help him out, but he’ll need for all of us to provide support and advocacy.

And on the subject of advocacy – The council will be back in session mid-month.  Now is the time to make your voice heard – especially with councilmembers Yvette Alexander and Kenyan McDuffie – to get bill B21-0385 onto the agenda of the Health and Human Services and Judiciary committees.  Read “Yes, You Really Can Do Something” from July 19 and earlier posts under the Advocacy label to get the background on this, or enter “B21-0385” or “commitment” into the box over to the right that says, “Search this blog.”

Project Action!, the very active self-advocates’ group coordinated by Heidi Case, is working hard to keep B21-0385 moving through the council, and is also active on other issues such as transportation concerns affecting persons with mobility issues and the upcoming November elections.  Here’s the flyer for Saturday’s Project Action! meeting:  Do your best to attend or facilitate attendance at this important meeting.

Monday, August 8, 2016

Things Don't Always Turn Out as Planned!

Just yesterday, I reported that I would be serving today on the first round of selection for the new DDS director.  Yet here I am, writing another blog post instead.  The panel is indeed interviewing, but I decided not to be a part of the process. 

As part of the pre-interview briefing, Mr. Walker, whom I’ve mentioned in earlier blog posts (May 12 and May 26 of this year), passed out the non-disclosure agreement each of us was expected to sign.  It was small print, 4 or 5 pages (but who’s counting?), and in my personal opinion it was overly broad – way more restrictive than any personnel-related agreement I ever had to sign in my 30-plus years in government.  But whether I’m right in my opinion about it or not, we all frankly could and should have seen the agreement in advance - it certainly would have saved me a trip to the Wilson Building!  I knew, as I wrote in this blog yesterday, that I would need to protect the confidentiality of the specific candidates and their answers in the interview, but if I had signed I would have been unable to mention what topics were discussed today for two whole years!  To me, that would be inconsistent with my primary role of information sharing and issue advocacy, and I simply don’t want to have to ask myself when I sit down to write, “Now when exactly did I hear that information?”  I can be much more useful to the community by keeping the issues on the table, as openly as I can.  And let’s face it, the issues facing the District’s disability community just aren’t that much of a secret!

And I’ll tell you straight – the room was full of very able folks who will make sure the right questions get asked, and I hope most of them long ago read my post, “Here’s What I Would Ask” (May 26, 2016).  I did want to add a new question today about the balance between the CMS rulemaking on community-based supports and person-centered planning, an issue I raised in “Who’s Watching Out?” (February 13, 2016), but I’m not sure that would have made the cut since there wouldn’t be time for everyone’s questions.  In the end, my own two-cents’ worth would have been unlikely to tip the balance in the interview process today, and in any case there are going to be other rounds of interviews going forward, including one with the ultimate decision maker, the mayor herself. 

So hey, I have no idea who walked through the door after I left.  What I do know is that, whoever winds up as Laura Nuss’s successor, I’ll still be here to pester them.  And in the meantime – panel members, all readers, maybe Madame Mayor herself – keep reading.

Sunday, August 7, 2016

August Update

The past few weeks have turned out to be pretty busy ones for me.  I hope some of you are enjoying a bit of vacation, and if all goes well I’m hoping to get some of that a little later this month!  In the meantime, here are some updates:

Project Action! folks got some quality time with a number of council staff on July 26, but unfortunately Yvette Alexander’s office didn’t agree to meet with them.  So – especially for folks from Ward 7 -  put the pressure on Councilmember Alexander (and others!) for a hearing on B21-0385 as soon as the council’s back in session in mid-September.

Quality Trust’s July 31 cruise on the Potomac was one of the best I’ve been on.  It was well attended, and great fun in spite of the steamy weather – most everyone stayed inside where there was air conditioning.  QT plays an essential role in advocacy and monitoring for folks receiving support in the District – so even if you didn’t make it on the cruise, give them your support year-round.  (And yes, I’m on the board.)  Next year the event will be on dry land.

I was surprised to get an email about a week ago from the mayor’s Office of Talent and Appointments – the folks running the effort to replace Laura Nuss as head of DDS (check the separate page on acronyms if you don’t know what DDS is).  Tomorrow will be the first round of interviews for candidates who’ve applied for the position, and I’ll be there along with some other people who are involved in local disability issues.  There will be two more rounds of interviews after that  (see my posts, “Here’s the Scoop” from May 12 and “Here’s What I Would Ask” from May 26) so there won’t be any definitive results from tomorrow’s meetings, but I’m encouraged things are starting to move.  I won’t be able to provide specifics about the candidates given the nature of the process, but I’m  hoping to be impressed by the folks who’ve applied for the position.

Maybe I’ll have something more to write before the end of this month, but if not, watch this space in September.  And – small personal mention – this month marks two years that I’ve been writing my blog.  I sincerely hope you get something out of reading it.  Speaking for myself, it’s brought a large number of people into my life that I didn’t know two years ago, and I am so much the richer for having met you. 

Monday, July 18, 2016

Yes, You Really Can Do Something

PLEASE CONTACT COUNCILMEMBERS YVETTE ALEXANDER AND KENYAN MCDUFFIE, AND YOUR OWN COUNCILMEMBER, TODAY TO EXPRESS SUPPORT FOR BILL #B21-0385 AND ASK FOR A HEARING TO BE SCHEDULED AS SOON AS POSSIBLE.  You can find all councilmembers’ addresses at:  The Health and Human Services committee, chaired by Alexander, and the Judiciary committee, chaired by McDuffie, have joint responsibility for this bill.  

Please re-read my blog posts from this past winter, in particular “Overdue Change for the District” and “A New Year, A Chance for New Beginnings” if you need to be reminded what B21-0385 is about.  You’ll remember that the hearing scheduled for January 27 had to be cancelled due to the Snowzilla blizzard, but it has never been rescheduled.  A prompt hearing is needed so that the council has time to vote on the bill before it adjourns this year.

Folks in the legal profession can be very persuasive, and quite a few of them have a stake in keeping in place D.C.’s system of mandatory court commitment for people with intellectual disabilities.  It’s hard to fault them for advocating on behalf of their own self-interest and incomes.  They’ve been loud in their opposition to this bill, so loud that the committee chairs have gotten scared off and are trying to either avoid a hearing completely or to hold it so late that there won’t be time for a vote this year. 

So the two of them need to be told that a hearing has to take place as early as possible after the council returns from recess on September 15.  They also need to hear voices in favor of progress, voices in favor of civil rights, voices in favor of choice.  (Remember, this bill allows those currently under civil commitment for DDA services to choose to continue under the court system.)  Self-advocates from Project Action! ( are working overtime to write letters to the council, but the balance of power is in favor of D.C. lawyers right now and our friends with disabilities need your support!  Please flood the council with your emails and letters so they know not everyone is a lawyer with a stake in denying people their choice to receive services without court control. 

Even if you wrote the council back in the winter, WRITE AGAIN.  The time is now to get the hearing scheduled.  It won’t take you long.  One email to all three – the two committee chairs and your councilmember – will do the job.  BUT PLEASE DO IT.  

Thursday, June 30, 2016

Running the Race

Summer’s here, and everything’s gone quiet:

-          Finding a replacement for Laura Nuss seems to be going nowhere fast.  Last I had heard (see “Here’s the Scoop,” May 12) the process of reviewing candidates was expected to get started around Memorial Day, but local disability organizations are hearing nothing from the mayor’s office about starting that process.  Andy Reese, the interim director, is settling in.

-          Yvette Alexander was defeated by former mayor Vincent Gray as the Democratic nominee for her seat on the D.C. council, so the long-delayed rescheduling of the joint hearing on the Citizens with Intellectual Disabilities Civil Rights Restoration Act ( is seeming even less likely to happen during this council session.

Summer doldrums are real, and it’s easy to feel discouraged.  But when advocating for change it pays to remember that old adage from Aesop’s fable about the tortoise and the hare, “Slow and steady wins the race.”

I was thinking about this when I attended the third public session of the D.C. statehood commission on June 13 (  Now THAT is an effort that’s been under way for decades, and the forces are still arrayed against allowing D.C. residents our full rights to representation in the U.S. House and Senate.  What’s almost worse is that those who live here are so used to the situation that few of us try to do anything about it.  This new effort, which may show up on the November ballot if it makes it through the council, deserves serious support and effort from all of us.

Think about how hard people with disabilities have pushed, and continue to push, for their civil rights.  As a matter of fact, while I was attending the statehood convention that morning, self-advocates from Project Action! were meeting to talk about how they can bring more pressure to bear to get B21-385 back onto the council agenda.  They aren’t giving up because they know how far things have come already and that, sooner or later, this odd relic of D.C.’s history, civil commitment, will finally be rolled aside.

But it all takes effort.  So I’d like to add extra pressure with some direct personal appeals:

-          Ms. Alexander, I’ve appreciated your hearing me out when I’ve testified before your committee, and you seem sincere about making progress on the rights of D.C. citizens with disabilities.  You could leave an important legacy by moving ahead on B21-385 – so give Council member McDuffie a call and say, “Let’s schedule that hearing!”

-          Mr. Walker, everyone’s wondering what’s up with the search for a new director of the Department on Disability Services.  There’s a meeting of the Supporting Families Community of Practice on July 11.  How about coming to talk to families about where the process stands?

-          Everyone - add your voice by posting a comment on these issues.  And while you’re reading, pay attention to the progress of the constitution for New Columbia through the D.C. council.  It may show up on the ballot in November, and it deserves your support.  Imagine how much more we could do about the future of our family members with disabilities if we actually had national voting representation.

Now I think of it, we need to have the impatience of the hare and the determination of the tortoise in the race.  And above all, don’t just stand there!

Monday, June 13, 2016

How We Change the World

My son voted for the first time last week, in early voting before Tuesday’s formal D.C. primary.  I convinced him to register a couple of years ago, but getting him actually to vote has been much harder.  I’ve had trouble understanding exactly why.  It could be because the cocoon of support around him still makes him feel childlike and fearful of “stepping out” into the adult world.  It could just be because it’s too much trouble to try to understand candidates and issues when listening to music is a lot more fun!  Whatever the reason, he came around.  But before going to vote, I insisted that we spend a little time talking about the positions and people on the primary ballot.  At first he said he didn’t want to come with me; then he called back and said he would, and he would let me “tell him who to vote for.”  I refused to do that, and tried to be as objective as I could in describing who was who: in the end he didn’t even ask whom I favored, and that made me happiest of all.

When we walked into the voting site, it was as empty as I had hoped.  I had written ahead to say he might be anxious and need my help with voting, and I had the Board of Elections response in my bag in case the issue came up.  But I know from monitoring polling places myself that there also are election workers available to help out.  We were the only two entering the room, so I told the volunteers that it was his first time voting, and they all clapped for him.  He instantly felt at ease, and walking in with confidence, he told me he didn’t need my help.  And he didn’t.  The only assistance he received was the same that I got – being shown how the new machines work, then how to print and proofread the ballot before feeding it into the tabulator.

Sure, I know how little our D.C. vote counts in the big picture (see yesterday’s Washington Post,  With our single (non-voting) member and a shadow D.C. representative on the ballot, I had gently tried to explain to him D.C.’s “special status” without launching into a tirade about taxation without representation.   Still, the local elections count for more, and I wanted him to be enthusiastic, not discouraged.

And yes, I still felt a mother’s pride when he slapped the “I Voted Early” sticker on his T-shirt and strutted out of the community center.  After all, every vote is about the future, not about the past, and one by one, little by little, votes and advocacy do bring change.  It’s harder to believe in positive change with the ugliness of this political season and the news of our latest mass shooting out of Orlando, but I truly believe the wavy line of history does tend toward the good. 

That comes primarily by people speaking up for themselves, including people with disabilities.  We parents sometimes have a hard time stepping out of the way and shedding our protective instincts, and I know I don’t always get that right myself.  But the more people with disabilities vote, speak up, are visible in our community, across the country and across the globe, the more they have the ability to change the world.  And maybe my son and the rest of his generation will also bring about, and live to see, the full civil rights of all the people in our nation’s capital.  I’m counting on him.

Thursday, May 26, 2016

Here's What I Would Ask

I mentioned in my last blog post that Steve Walker, director of the mayor’s Office of Talent and Appointments, thought they would start reviewing candidates to succeed Laura Nuss this week.  So far, folks who would have expected to be involved in the first round haven’t been contacted.  Let’s hope there are some top-notch candidates who’ve expressed interest so things can get moving soon.  The annual meeting of the National Association of State Directors of Developmental Disabilities Services (NASDDS) will take place in a couple of weeks, and I hope there will be some lively lobbying there to get more people interested in applying.

I won’t be at the table for the selection of the new director, but if I were here are some questions I would want to ask:

  •           What do you view as your greatest personal accomplishment in the past five years to improve the lives of adults with developmental disabilities?
  •           Besides closeout of the Evans case, what will be your #1 priority if you are chosen for this position?
  •           What is your personal record of advancing organizational change and motivating staff for sometimes unpopular reforms?
  •           What actions have you taken in previous jobs to foster public transparency and increase give and take with stakeholders, including families?
  •           How do you plan to approach the legislation on commitment that is currently under consideration in the D.C. council?
  •           As director, would you advocate for broadening DC waiver services to citizens with autism or other developmental disabilities who do not have an intellectual disability?

For background on any of these questions, a good start for candidates or other readers would be to click on the Advocacy label in this blog and read some of my past postings.  If you have additional concerns, post a comment!  There’s a lot of work ahead to make things better in our city for citizens with developmental disabilities, and we want to be sure the new director builds on past progress and takes our hopes for the future to heart.

Thursday, May 12, 2016

Here's the Scoop

It’s taken some doing, but at last I have a fairly clear picture of how Laura Nuss’s successor at DDS is going to be chosen.  The selection process is being handled by the mayor’s Office of Talent and Appointments (MOTA), headed by Steven Walker (, in very close collaboration with the deputy mayor for Health and Human Services, Brenda Donald (   Based on conversations with Steve Walker, this is how I understand the process will unfold.

The position already is being advertised, with outreach through a number of different channels normally used for executive-level positions as well as more targeted advertisements to reach those already in positions similar to the DDS director job who might be interested in applying.  MOTA has not yet collected a large enough pool of candidates to move to the first round of consideration, and Walker is eager to receive specific names of individuals he might want to reach out to.  So if you know of someone – for example someone good in a DDS director or deputy DDS director job in another state – it’s important to let Steve Walker and Brenda Donald know.                  

By May 23 or so he hopes to have a pool of at least 4 or 5 viable candidates so that the first round of consideration can start.  This first round is most important for the disability community, because this initial panel will include stakeholders in addition to D.C. government representatives.  “Stakeholders” will definitely include representatives of DDS-affiliated commissions such as the State Rehabilitation Commission (SRC), the State Independent Living Commission (SILC), and the Developmental Disabilities Commission (DDC).  (See my page, “Acronyms and Organizations You Should Know,” for more background on these commissions.)  Beyond these, there are plans to include organizations such as the Quality Trust (, University Legal Services (, and Georgetown’s University Center (, and hopefully also the Family Support Council and Project Action!  I have encouraged Steve to include representation by the local D.C. Autism Society chapter ( as well, since the DDS-administered Medicaid waiver will hopefully extend eligibility beyond those with intellectual disabilities on the new director’s watch.  (See my earlier post, “On the Spectrum in D.C.,” October 23, 2014, at

After the field of candidates has been narrowed to the strongest 3 or 4, in a second round of consideration MOTA, the deputy mayor’s office, and the National Association of State Directors of National Disabilities Services (NASDDDS, will examine these candidates and narrow them down to a final 2 or 3, with the final round including Mayor Bowser, Deputy Mayor Donald, the city administrator, and the mayor’s chief of staff to make the final selection of an individual who will go before the council for final confirmation.

As I look at this process, I would anticipate that Andy will be acting throughout the summer.  I’ll do my best to keep you as informed as I can as I learn more about the timing.

Friday, April 22, 2016

Today's the Day

Today is the last day that Laura Nuss is on the job at DDS.  Many of you are grieving, a few may be cheering, but all of us should feel a sober determination to move forward together to ensure DDS systems remain strong and the momentum for change continues. 

I heard Laura received a standing ovation at the Wednesday hearing on the Evans lawsuit – hailed by the judge and even by the plaintiffs’ attorneys for the progress D.C. has made.  It would be great to be able to say that the lawsuit is now closed, but from what I understand there are still some legal issues to work through and it’s going to be at least several more months before the page has turned.

Andy Reese will be acting director of DDS for a time, and I understand the mayor has launched a nationwide search for Laura’s successor.  I don’t know much about that process but have offered my opinion that there should be some significant local participation in the selection.  I certainly hope this will happen.

Best of luck to you, Laura, in your next chapter.  And now – shoulders to the wheel!

Wednesday, April 20, 2016

Oh No You Don't!

Don’t just read this and not take action.

I know I have a lot of readers out there, and many of you tell me I speak for you.  But you need to speak for yourselves, and for those you care about – and not just when you want to complain about services.  The DDS budget is in trouble.  You need to help.

No one gets services without resources.  And remember, if you or someone you love is getting services now from DDS – DDA or RSA – you are the lucky ones.  Many, many people in our city don’t qualify for DDA supports at all under the current eligibility criteria.


I was the only family member testifying in person on Monday, and I know there are others who could have been there.  You still have time to send written testimony, anytime today until 5 p.m., to Malcolm Cameron at It doesn’t have to be as detailed as mine – 2 or 3 lines – The DDS budget isn’t enough!  The mayor needs to pay attention to people with disabilities in our city!  DDS matters to my family, to our city!

And if you don’t get to it today, you’re not off the hook.  Find your council member here: Then take five minutes sometime over the next two weeks to send him or her the same message. 

Numbers matter.  Let the council hear from you. Now.

Saturday, April 16, 2016

We Need to do this, Folks!

All of you know that Laura Nuss is about to leave and the future leadership of DDS is unclear.  What you may not realize is that the DDS budget for the 2017 fiscal year is as lean as can be this year.  The mayor’s focus on education, homelessness, housing and safety has the resources pointed elsewhere, in an overall city budget that’s already tight.  

I had hoped to have available for you the Power Point used to present the DDS budget at a session on April 13, but with the closure of DC offices for Emancipation Day it doesn’t look like it’s yet been posted to the DDS website. But you don’t need a lot of details in order to make the case for this budget.  Please, override your (legitimate) concerns about specific aspects of services, and send even brief testimony to the Health and Human Services committee, which will be considering the budget in a hearing on Monday.  You’ll have until Wednesday to submit testimony.  Send it to Malcolm Cameron at mcameron@DCCOUNCIL.US.  Also let your council member know that this is important to you!  Find your member at and send an email!  They need to hear our voices!

You know that I have long advocated to expand DDA services to people with developmental disabilities who do not also have an intellectual disability.  Well, the DDA budget is so tight that we’re close to needing a wait list just to serve those with ID who qualify under current criteria for the Medicaid waiver.  And without its budget request, RSA will be cannibalizing services for adults it serves in order to meet federal requirements for transition services to students.

Your voice must be heard.  Folks in the council are used to hearing from me – they need to know there are others out there.  Do it.  I mean it.  Do it before Wednesday.

Thursday, March 24, 2016

Busy Times Indeed!

There are a lot of important things happening right now, and I want to keep folks up to date:

First, the correct date for the DDS budget hearing is Monday, April 18 at 10 a.m.  I apologize for broadcasting a different date earlier ("As Budget Time Approaches," 3/14/16).  So brush up that testimony and have it ready by April 15!

Second, there is a new hearing on the Evans lawsuit scheduled for April 20.  I don’t yet have the details but will communicate them when I do.

And finally, Laura Nuss has been persuaded to remain in her post through April 22 (not April 8 as she announced) in order to accommodate these two extremely important events.  Bravo!  

Monday, March 21, 2016

Turning the Page at DDS

No sooner had I sent my earlier post today than I learned a piece of late-breaking news that’s important to our whole community.  Today Laura Nuss announced she will leave her post as director of the Department on Disability Services in a short two weeks.  Here is the verbatim text of her announcement: 


I have been honored to serve in the Department on Disability Services for the past 8 and 1/2 years; first as the Deputy Director for DDA and then as of May, 2010 as the Director.  We have accomplished more than anyone could have imagined, and I am proud to have worked side by side with all of you to achieve this progress.  However there is a season for all things and spring is a time for change, which for me means  that I will be leaving DDS in the upcoming weeks. 

As you know, we are on the cusp of achieving final compliance with our last 5 exit criteria in the Evans v. Bowser class action after 40 years!  Regardless of the outcome of our Certifications of Compliance, our path forward is clear.  The new CMS requirements demand that all people with IDD receive services in an environment like people without disabilities, and, that we move aggressively forward on assisting people to gain employment and engage in learning in inclusive environments.  That will take all of DDS, other District agencies and our community partners to work together to make this goal a reality for all of the people we serve.  The District has a transition plan in progress and our provider community will need to take very seriously the changes that will need to be made in support of those CMS requirements.  I know DDS will be doing its’ part to ensure our continued success.

While I would have enjoyed being here especially when Judge Huvelle dropped the gavel on the Evans case, my tenure with DDS was about more than the Evans case.  I have always said "systems change" is not dependent upon one person.  It is about working together to support the development of a sustaining system of services, built on policies, rules, training, staff development, leadership, cross-agency collaboration,  funding, performance management systems, technology, customer service, commitment, teamwork and enthusiasm.  That sustainable system has been established, and now it simply must remember to follow the tenants of a learning organization and always strive to improve.

I have decided that my tenure with DDS has run its' course, and coupled with my family obligations I have decided resign my post as  Director of the Department on Disability Services, and accept another position that will allow me to continue my contributions to the field but with a bit more flexibility.   I know I have worked hard, am proud of what we have achieved, and will always be committed to the people of the District and the team at DDS.  I am confident that each one of you will also continue your commitment to serve the people of the District of Columbia.

My last day will be April 8, 2016.  I look forward to talking with many of you before then to personally thank you for all that you do and for making these last 8 plus years easily the most meaningful of my professional life.


Even though she correctly states that “ ‘systems change’ is not dependent upon one person,” anyone who listened to the Austermuhle broadcast last week knows how central she has been to the turnaround in D.C. disability services in recent years.  She has worked hard to get systems in place, and she has gotten some strong people in leadership positions around her.  One of them will surely step into her role on an acting basis, but the next move will be Mayor Bowser’s.  These are very big shoes to fill.

So Much Accomplished, So Much More to Do

Last week was a great one for shining a light on all that’s been accomplished for persons with developmental – mainly intellectual – disabilities over the past decade.  As I reported in my last post, WAMU-FM (88.5) broadcast an entire four-day series by reporter Martin Austermuhle focused on the road the District has traveled since Forest Haven, “From Institution to Inclusion” (  I hope everyone will take the time to fully explore all the written, audio and video materials accompanying the series.  You’ll come away with a very good historic understanding of the road D.C. has traveled and the meaningful progress that’s been made.  In addition to that series, on Thursday of last week Kojo Nnamdi interviewed Laura Nuss, DDS director, and Tina Campanella, CEO of the Quality Trust ( – though unfortunately too briefly to allow for call-in questions.

I’m extremely happy that Austermuhle did such a comprehensive and thoughtful series, heard throughout the city.  However, as he wrote in an “Author’s Note” to the introduction:  “Intellectual disabilities are a subset of developmental disabilities, but not all people with a developmental disability have an intellectual disability.”  This is very true, and for that reason I was quite disappointed when he didn’t acknowledge that only those found to have an intellectual disability are eligible for waiver services in D.C., leaving those with different types of developmental disability left out of the system.   For more on this topic, see my earlier posts labeled Past Reforms and Advocacy, in particular “As Budget Time Approaches“ (3/14/16), “It Takes Money to Make Things Run” (4/18/15), and “Thirty-five Years and Counting” (12/19/14).

This leads to my second misgiving about the series – namely, it was so focused on progress made since the dreadful days of Forest Haven and group homes that it glossed over significant current challenges with service delivery and the lack of access to services by so many in D.C.  No question that employment is an essential issue, but the sudden shift in the story to employment programs in Washington state left the impression that there are just two sides to the coin:  deinstitutionalization and employment.  We know it’s much more complicated than that.  While there were a few broad references to the complexity of community integration in the report, the hasty conclusion left so very much unsaid.  I hope Austermuhle will do a follow-up before too long which takes a broader and longer-range view of D.C.’s challenges going forward. 

Monday, March 14, 2016

As Budget Time Approaches

The DDS performance review hearing before the Council’s Health and Human Services committee took place on March 10.  And first, I want to say how happy I was to see some of you there.  Secondly, I wish more folks had been there to testify.  It’s hard to overstate how important it is for the council to hear from individuals who are touched by DDS, either directly or as family members/friends. I hope some of you sent written testimony even though you couldn’t be there.  You’ll have another opportunity when the same committee hears testimony on the DDS budget for fiscal year 2017 on April 20:  let Malcolm Cameron ( know if you plan to testify or submit testimony. 

There was a substantial amount of discussion at the hearing about bill B21-0385 (“A New Year, A Chance for New Beginnings,”  January 19), and in her remarks Chairperson Alexander seemed to favor the naming of a DDS ombudsman as a way to alleviate some of the concerns being expressed by the families of people who now receive services under court commitment.  No mention was made about rescheduling the hearing that was cancelled due to the January snowstorm, but on the fringes of this hearing Kenyan McDuffie, the chair of the judiciary committee, which also has jurisdiction, was meeting separately with people who favor that bill (as I do).  Please reach out to your council member to express your viewpoint on this important piece of legislation that will help shape the future of disability rights in the District!

The majority of the questioning by council members Alexander and Nadeau – the only members who came, although Grosso had staff there through most of it – was about RSA issues, particularly transition services, staff counseling and caseloads.  There was also questioning about DDA, although less than last year it seemed to me.  I was personally disappointed that, although last year she was very engaged on the subject, Chairperson Alexander seemed much less energized, even a bit confused, on the issue of expanding D.C. waiver services to include people with a developmental but not an intellectual disability.  It also was disappointing that DDS director Nuss, in her response on that matter, was not very up to speed herself about the estimated number of people affected or the status of the updated needs assessment which DDS and the Developmental Disabilities Council are working on.  Luckily the DDC director, Mat McCullough, was able to shed some light on this topic in his testimony later in the day.

The video of the full day of hearings is at:  I testified on the panel that starts about an hour and 15 minutes into the video, which included very informative testimony by University Legal Services about DDA and RSA, as well as testimony about the self-advocacy group, Project Action!  Among other things, I discussed the emerging tension between person-centered thinking and the way in which community-based day programming is being implemented.  If this is a concern for you, I urge you to view and comment by March 21 on the pending D.C. state plan at

Testimony by Laura Nuss begins about three hours into the video, and questioning of her and her two deputies – Andy Reese for RSA and Jared Morris, now formally named as deputy for DDA – about three and a half hours in.  If you can only watch part of the video, I strongly recommend that you watch this question and answer portion.  Incidentally, if you’re interacting this month with DDS, be aware that the agency is preparing to move toward the end of this month to a new location, at 250 E St SW.

Finally, this week WAMU-FM (88.5) is marking Developmental Disabilities Month with a four-part series, Tuesday-Friday at 6:50 and 8:50 AM, by Martin Austermuhle on “struggles of  D.C. residents with developmental disabilities.”  Also, Kojo Nnamdi will interview Tina Campanella of the D.C. Quality Trust on Thursday at noon.  These should be well worth hearing, and I hope you'll tune in.

Saturday, February 13, 2016

Who's Watching Out?

Let’s face it – this is what we all want to know.  Whether your loved one is among the 700 or so people receiving services under civil commitment, or one of the great majority in D.C. who aren’t, we all want to know:  Who cares?  Who’s watching out?  Who’s keeping an eye on the service providers?  I believe persons with disabilities have the right not to have a judge deciding for them what services they need.  But I worry too, and I realize the less your loved one is able to communicate verbally his or her own needs, the more you worry about who is there – who will be there – to make sure DDS is doing what it should do.

These aren’t easy issues.  Families and friends across the country are grappling with this every single day.  My husband and I have no other relatives in the D.C. area, and we work constantly to build our son’s circle of support here so that there will be people around who care, who will be paying attention, when we no longer are here for him.  Here are the things that concern me most about DDS services, today, and what I’m trying to do about them so things go better in the future:

-          Turnover.  What we all want is for support personnel and decision makers to know, really know, the needs and preferences of the person we love who is in their care.    Fortunately D.C. requires providers to pay a living wage, but the “churning” of staff still sometimes seems endless. This is true in provider organizations, where it affects the quality of record keeping and how well DSPs know and understand our loved ones.  But it’s also true inside DDS:  our son has been receiving DDA services for only 1 ½ years, but already he has had three service coordinators.  (Refer to the page of acronyms over on the right to help you understand some of the abbreviations I'm using.)

-          Poor information flow.  A lot of work has been done, especially in the State Office of Disability Administration (SODA), to try to make more information available to the public, through briefings, the DDS website (, and in other ways, about new policies and directions in which DDS is heading.  But often the folks we deal with directly are the last to know:  they just don’t seem to get information systematically from the SODA, or from DDA management, about new initiatives or policy directives. Sometimes provider agency personnel know before service coordinators do.

-          Unclear systems.  It often seems the answer you get to a question changes depending on who you’re talking to.  In some ways this may be due to poor information sharing, but I notice it happens all the way up the chain to senior management.  Being a squeaky wheel can help get results in any system, but too often with respect to DDS it seems to BE the system.  Reliable, understandable regulations and procedures, with clear criteria for exceptions, would be a fairer approach.  I think things are moving in this direction, but often that movement seems far too slow. 

-          Lowest common denominator.  The only way I’ve been able to get the kind of day programming my son needs is to push and push, and make arrangements myself for classes and volunteer opportunities.  There’s an inertia in the system that discourages creativity in tailoring support to individual needs and interests.  What’s worrisome in this regard is that DDA is now pushing all providers of day programming to become more “community-based,” essentially requiring them to keep people offsite to the maximum extent possible.  People have different preferences and tolerances for going from library to rec center, rec center to McDonalds, and for some the obligation to be out in the community all day long is a source of great anxiety.  Unless it’s implemented in a smarter way, this “community-based” push is going to conflict more and more with another stated goal, person-centered programming, which should mean individualization and choice if it means anything.

-          Employment.  “Employment first” is a good slogan.  I even believe it’s a sincere goal.  But here again, DDS - both RSA and DDA - needs to show a lot more creativity.  Day programs need to help people identify their particular skill sets, help them address the challenges standing in the way of competitive employment, and bring them into contact with potential employers.   At the same time, RSA needs to get together with local businesses and come up with plans that make more diverse employment opportunities available.  Relying on the federal government, Project Search, and grocery stores is not a plan well suited to everyone. 

You’ll notice that my concerns aren’t mainly about health and welfare.  A lot of effort has gone into establishing monitoring systems in recent years.  DDS has beefed up its own monitoring and oversight of provider performance – in fact as I write this, provider certification reviews (PCRs) are taking place.  University Legal Services (ULS) has direct responsibility for investigating accusations of abuse or neglect.  The Quality Trust has been monitoring the quality of DDA and provider service delivery for many years, and with the impending closeout of the Evans case it is assuming oversight for those individuals as well.  The D.C. council, too, keeps watch over DDS operations, and will conduct hearings on DDS performance on March 10 (put it on your calendar!).

Still, it’s true that D.C.’s services for people with disabilities – as in most of the rest of the country - don’t operate in very creative or imaginative ways to help people make progress and realize their personal potential, unless there’s someone pushing hard from the outside to make them do so.   Keeping my own information records in order; making sure the service coordinator and agency personnel know about new initiatives and regulations; seeking out and arranging for concrete opportunities:  these are some of the things I do routinely.  And yes, I worry about who will do all this when I’m not around.  This is what makes me a woman in a hurry to see improvements, to help my son learn to advocate for himself, and to cultivate local friends and supporters who – with out-of-town family - will continue paying attention even when we no longer are here.  We all need circles of support, and these make the very best watchdogs.  

Monday, February 1, 2016

Curb Cuts!

This topic is a little outside my normal set of concerns, but during and since our “Snowzilla” storm it’s been on my mind.  Then this morning I heard a friend who gets around by motorized chair being interviewed on the radio, and I decided to do a short post about “snow mountains” at intersections.  The subject on the radio was about people who rely on wheels to negotiate the sidewalks, but the fact that street plows have been piling snow (now ice!) at intersections that residents often have already shoveled is an issue that affects everyone – wherever we are on the different-abilities spectrum.  As was pointed out, this has prevented many folks from even getting out of their house, but it also has regularly forced schoolkids, workers, retirees and other people, of all abilities, into the line of traffic.  We should never have another snowstorm in which street plows systematically block the route for those who need to use the sidewalk.  I hope Susie Cambria ( has written about this, or will.  I also hope the mayor ( next time will not only berate citizens for getting in the way of the plows, but also make sure plow drivers know to push the snow where if won’t consistently block citizens’ access to the sidewalk.  City council members  ( please also pay attention!

Another problem “Snowzilla” caused was the cancellation of the January 29 council hearing on the “Citizens with Intellectual Disabilities Civil Rights Restoration Act of 2015,” which I wrote about in my last posting.  The best way to be sure you learn when the hearing is rescheduled is to watch the council website (see above) or to let Erin Leveton in the State Office of Disability Administration ( know you’d like to be notified.  Also, if you’re interested in testifying – in person or in writing – contact Malcolm Cameron (  You may be tired of reading about this bill (although it’s important!), so you should know I’m also working on some posts that deal with more day-to-day concerns.  Keep watching this space, and I hope we all will soon have emerged safely from the snow and ice!