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.

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 (steven.walker@dc.gov), in very close collaboration with the deputy mayor for Health and Human Services, Brenda Donald (Brenda.donald@dc.gov).   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 (http://www.dcqualitytrust.org), University Legal Services (http://www.uls-dc.org), and Georgetown’s University Center (http://ucedd.georgetown.edu), 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 (http://www.autism-society.org/chapter130) 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 http://ddinwdc.blogspot.com/2014/10/on-spectrum-in-dc-theres-not-yet-much.html.)

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, https://www.nasddds.org) 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.

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!

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.

So:

Here is the Power Point for the DDS budget:  https://drive.google.com/file/d/0B489LE-2ltOgbUdJV2xKbG9nU00/view?usp=sharing

Here is my testimony to the council committee:  https://drive.google.com/file/d/0B489LE-2ltOgTEpnTXpTQ3dxbEk/view?usp=sharing

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 mcameron@dccouncil.us. 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:  http://dccouncil.us/council. 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.

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 http://dccouncil.us/council 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.

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.:  http://dccouncil.us/calendar/index-filtered.  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!  

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: 

Colleagues:

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.

Sincerely,

Laura

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” (https://wamu.atavist.com/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 (https://thekojonnamdishow.org/shows/2016-03-17/better-served-a-turnaround-for-d-c-s-disability-services) – 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. 

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 (mcameron@dccouncil.us) 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:

http://dc.granicus.com/MediaPlayer.php?view_id=2&clip_id=3118.  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 http://www.dcregs.dc.gov/Gateway/NoticeHome.aspx?NoticeID=5857362.

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.

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 (www.dds.dc.gov), 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.