The Times They Are A-Changin'

I remember when I first heard Dylan, I was young enough to think progress was an inevitable fact of life.  Now I’ve lived long enough to understand that progress takes a lot of work.

I’d like to take the opportunity, then, to salute all of those who made it their business over the past 40 years to bring the District out of the dark days of Forest Haven, through the many years of poor services and stalled reforms, to the recent years of determined efforts and political will – to bring the Evans case, at last, to a close.  This accomplishment, and the new roads ahead, were a major focus of the performance hearing on February 15.  You can find the archived video, including many important witnesses and some very good Q and As from the new committee chair, councilmember Brianne Nadeau, and others, at www.dccouncil.us.  If your time or patience is short, here are some specific pieces of written testimony you’ll definitely want to read:  Andy Reese, DDS director, https://tinyurl.com/gnqq6mw, and Jimi Lethbridge, Quality Trust, https://tinyurl.com/jj3aulh.

I had serious laryngitis that day and was preserving my voice for the D.C. Statehood Coalition’s Lobby Day on the Hill (http://www.dcvote.org/events/statehood-coalition-lobby-day), so I didn’t testify in person.  I did, however, submit written testimony, and this time I chose to focus on an issue near and dear to all our hearts:  employment.  One positive way in which things are changing, as you see from Reese’s testimony, is that employment is becoming a much more prominent focus of efforts on behalf of local citizens with disabilities.  Still, we have far to go, and based on my family’s experience up to now, I offered these specific recommendations to the committee: 

-       The need to redouble efforts to reach DCPS students – even those in out-of-state placements – with effective RSA transition assistance, since it is infinitely harder to recoup delays after the school years.

-       The need for RSA and DDA to pay particular attention to the needs of young adults in their 20s who may not be students but who are nevertheless still establishing their direction in life and need substantial support in these efforts.

-       The need not only to pursue customized employment, but also to customize the ways in which RSA and DDA conduct “discovery,” tailoring it to the particular needs of the individual in order to help build confidence and let the person lead with their skills rather than being overwhelmed with bureaucracy.

-       The need for DDA to clarify for providers of Individualized Day Services the exact parameters of what they can and cannot do to assist people with career exploration.

-       The need for DDA to think very carefully about proposed deadlines on the duration of employment-readiness services under the waiver, in order to ensure sufficient flexibility in extending those services where that is clearly in the best interests of the person being served.

-       The need for DDS provider agencies to be aware of the full array of D.C. community resources and to ensure that front-line Direct Support Professionals receive this information and put it to use on behalf of the people they support.

-       The substantial work yet to be done through No Wrong Door and other DDS efforts to sensitize other departments of the D.C. government about their role in offering volunteer and paid work opportunities to D.C. citizens with disabilities.

I know readers have their own views about this topic, so feel free to join the conversation by commenting.  (You’ll need a Google email address.)

I’ve spoken here about ways in which things are changing locally, and mostly for the better.  However, I attended one of the mayor’s budget engagement forums (https://tinyurl.com/z7kokty) last week, and it’s clear that some changes at the national level could be problematic for those of us who make our home here in D.C.  We all need to work hard, in the weeks and months to come, to make sure our city’s progress is sustained and strengthened.

Update Your Calendar!

I’ve been pretty distracted by national issues lately, and by the potential effects of the election on our city.  But the beat goes on, and there are many upcoming events you should be aware of.  Here are a few, and all are open to the public without RSVP unless otherwise indicated:

Wednesday, February 15, 10 A.M., Room 412, Wilson Building.  The new chair of the council’s human services committee, councilmember Brianne Nadeau, will preside over the DDS performance review (http://dccouncil.us/events/performance-oversight-hearing-human-services) on Wednesday of this week.  Andy Reese will testify for the first time as DDS director.  This is the “season opener” for the 2018 fiscal year budget, looking backward at DDS’ performance.  Over the next couple of months DDS will be developing its budget, and sometime in April the committee will hold a forward-looking hearing on that. 

While you’re downtown for this on Wednesday, you can also make it to DC Vote’s Lobby Day on Capitol Hill:  http://www.dcvote.org/events/statehood-coalition-lobby-day.

Thursday, February 16, 3:00 P.M., Conference Room 1114, 441 4^th St. NW (Judiciary Square).  The D.C. Developmental Disabilities Council (DDC), also known as the Developmental Disabilities State Planning Council, will hold its first meeting of the new year this Thursday:

https://drive.google.com/file/d/0B489LE-2ltOgWkpReTdqUjg5Yms/view?usp=sharing

Saturday, February 18, 10 A.M.-1 P.M., Kennedy Institute, 801 Buchanan St. NE.  On Saturday Project Action will hold its monthly meeting until noon, followed by pizza and a seminar on alternatives to guardianship led by Quality Trust attorneys.

Wednesday, March 1, 4:30-7:00 P.M., Momofuku Restaurant, 1090 I St. NW.  And on the subject of Quality Trust (https://www.dcqualitytrust.org), QT will hold its annual Better Together reception - tickets $45.00 for an outstanding cause, great eats and wonderful company – on the evening of March 1^st.

Friday , March 10, 10:00-2:00 P.M., Walter Washington Convention Center, 801 Mount Vernon Place NW.  “Voices of Change” conference on secondary transition - requires preregistration:  http://events.r20.constantcontact.com/register/event?oeidk=a07edo5sz1gbbae7d13&llr=7r5atidab).

Thursday, March 16, 9:30-3:30, place to be determined.  Supporting Families Community of Practice.  Subjects will be new employment initiatives and (back to those national issues) ways in which Medicaid might be affected over the next few years.  

This spring promises to be busy.  We in D.C. need to stay aware and active in these uncertain times.  Disability rights, and D.C. rights, are human rights.  Let’s be ready to protect them.

Whose Information is It, Anyway?

Talk of civil rights – human rights – is in the air.  There are a lot of large-scale, national worries on this front.  But today I want to talk about something that’s easier to get hold of – how the Department on Disability Services and provider agencies handle sensitive data about the people they support.

Over the years I’ve had conversations with former DDS director Laura Nuss, Erin Leveton (erin.leveton@dc.gov) and others on this subject.  I know there are existing secure systems such as Therap and MCIS that DDS uses to share sensitive information with agencies providing services and supports.  In the past, DDS also has explored secure email communications systems for its interactions with agencies.  But here’s the problem:  no secure email system has ever been adopted, and the secure systems that exist aren’t available to family members or other supportive decision makers.  This means that everything that’s shared by email – sometimes very sensitive information - is insecure, and until DDS finds and adopts some sort of secure email system, that will continue to be the case.

I’ve asked over and over again for our son’s full name not to be included in emails that contain sensitive health information, but no matter how many times I ask this it seems the professionals who should know better keep on including his full name in their messages.  Even if I send an email specifically including only initials, or avoid being too specific in an email about some problem he’s having, they will write back with his full name and very detailed discussion of his personal business.

This needs to stop.  At a minimum, until such time as DDS has a secure email system for communicating sensitive information, guidelines should be provided to DDS and agencies receiving DDS funding about how to communicate in emails about people’s personal business.  Just because someone is receiving government assistance doesn’t mean that they lose their right to privacy.  Not my son, not your daughter, brother, sister or cousin.  We all have the right to privacy.

I know this can be cumbersome.  In the past I’ve had to work with secure systems and their logins, passwords, etc.  They’re a hassle, but they have a purpose, and they don’t have to be set up so that every email has to be sent this way:  if you’re just scheduling a meeting it’s clearly not necessary.  Let’s remember, though, that we owe it to the people we support to protect sensitive personal information.  DDS needs to set an example, starting now.

Austermuhle Report

In my last post I promised to provide an update on Martin Austermuhle's Evans follow-up.  Here is the report he gave on WAMU-FM yesterday morning:

http://wamu.org/story/17/01/10/judge-settles-40-year-old-lawsuit-d-c-treatment-people-developmental-disabilities/

Definitely worth a listen.

Big Developments in the New Year

Before the holidays I wrote about two particular upcoming events, one national and one local.  The national one, of course, is the inauguration of President Trump on January 20.  In my latest blog post I encouraged those who are eager to communicate a message of inclusion to the incoming president to turn out on January 21 for the Women’s March on Washington - https://www.womensmarch.com.   However, in the meantime, D.C.’s self-advocates’ organization, Project Action!, has made the decision to participate  as a group in the We Shall Not Be Moved rally - http://nationalactionnetwork.net – on January 14.  So - take your pick or do both!  If you’re interested in joining on January 14, Phyllis Holton at Quality Trust - pholton@dcqualitytrust.org – can put you in touch with the Project Action! group.

An event with more local potential is the formal closeout of the 40-year-old Evans class action lawsuit tomorrow, January 10, at the U.S. district court at 333 Constitution Avenue, NW (courtroom 23A).  DDS will host a celebration later in the day, 5:00 to 7:00, at their offices at 250 E Street SW.  It’s hard to overstate the significance of this moment – what it means about the immense progress made by advocates and by DDS itself, especially over the past decade, and also the opportunity it offers us now to look ahead and focus on today’s new challenges.  I understand that Martin Austermuhle of WAMU-FM may do a follow-on to his well-received series broadcast back in the spring (see my post, “So Much Accomplished, So Much More to Do,” March 21, 2016) to mark this event, and I’ll let you know when I hear more about the timing.

I’d also like to take the opportunity to note that a number of existing members of the Developmental Disabilities Council (http://ddc.dc.gov/), as well as a few new ones including myself, were sworn in by the mayor on December 15.  The DDC will be implementing its new five-year plan and helping confront new challenges facing our city’s developmentally disabled citizens.  I look forward to joining others in these tasks, but the views I express in these pages will continue to be entirely my own.

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 (alison.whyte@dc.gov) 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.

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.

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 (http://washingtonpeacecenter.net/) 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.  

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 (alison.whyte@dc.gov) or Rhonda White (rwhite@dcqualitytrust.org) 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 (https://www.facebook.com/brightpuzzle/) 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:  http://ddc.dc.gov/page/final-ddc-five-year-plan-2017-2021.

 

-          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): http://dccouncil.us/events/hhs-public-roundtable.

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 (http://supporteddecisionmaking.org).  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: http://www.dcqualitytrust.org.

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.

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 21^st 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.