Banding Together

There is such a lot of troubling news on the national front.  The House of Representatives has proposed a budget for the next fiscal year that would make drastic cuts in Medicaid funding, forcing the District and other jurisdictions to make wrenching decisions about how to support those in greatest need.  And the Trump administration’s budget seems to take the same approach.  It doesn’t mean everything is settled since the Senate hasn’t made its budget decisions yet, but the trends aren’t good. Even on the local front, I was disappointed to learn that the D.C. council’s committee on human services (http://dccouncil.us/committees/committee-on-human-services) has made cuts in the already-lean budget proposed for the Department on Disability Services (DDS):  https://drive.google.com/file/d/0B489LE-2ltOgMWxWUHJjWHNxNW8/view?usp=sharing.

These proposed budget cuts, nationally and locally, make it even more essential to make our own communities as supportive as we can for people with disabilities and their families.  I’ve been a part of the planning team for D.C.’s Supporting Families Community of Practice for some time now, but this was the first year I’ve attended the national-level Supporting Families conference, in Kansas City, Missouri.  D.C. was among the original six jurisdictions receiving a national grant in 2013 “to develop systems of support for families throughout the lifespan of their family member with intellectual and developmental disabilities (I/DD).”  Recently, eleven other states have joined the effort, and they participated along with the original six for the conference itself, followed by a day and a half of more in-depth sessions during which states shared their experience with the Lifecourse tools (http://www.lifecoursetools.com/planning) to help people and their families with individual planning.  The District’s efforts to bring local families together to develop and expand our own sense of community were highlighted in a variety of the sessions, on topics such as employment, supported decision making, and cultural and linguistic outreach.

A key aspect of the Kansas City discussions involved keeping the person’s life goals front and center, ensuring that waiver or other government supports, in addition to supports from friends, family and community, are provided within the context of the person’s own goals.  With my own son’s ISP meeting coming up, and given the frequent staff turnover that seems so much a part of waiver services, we’ve worked on his Employment Trajectory (http://www.lifecoursetools.com/wp-content/uploads/Life-Trajectory-Worksheet-updated-february-2017.pdf) and his Supports Star (http://www.lifecoursetools.com/wp-content/uploads/integrated-supports-star-worksheet-updated-february-2017.pdf) to guide discussion for the coming year.  We put a two-year timeline on these to make clear that everyone in his life needs to make the effort, now, to help him move ahead. 

Even if you use a different type of planning tool, the point is to make sure the focus isn’t just on day-to-day supports or DDS requirements, but rather on the needs of the particular person and his or her community of support, paid or unpaid.  Also, when you’re dealing with the operational side of DDS, it’s a good idea for families and friends to inject this sort of planning into discussions, since even reforms that are being pushed by the State Office of Disability Administration (DDS/SODA) can be slow to get implemented by DDS operations personnel in DDA and RSA.

Families supporting families, and even creating more welcoming communities, can’t replace all the support that some people with disabilities need, though.  So I urge you to contact your ward and at-large council members – especially if they are on the human services committee – to advocate against the cuts to the DDS budget.  And if, by any chance, you are a reader who lives and votes outside of D.C. – where we don’t get voting representation at the national level – please let your senators know that you absolutely oppose cuts to Medicaid, which provides essential supports to people with disabilities and others who depend on this minimal “safety net” to get by.  

It’s never been a more important time for advocacy, so step up.

Small Change

Early in April, Mayor Bowser presented her “DC Values in Action” budget proposal for the 2018 fiscal year, which boosts funding for schools, housing and infrastructure but overall keeps a tight lid on funding increases even though the District is in extremely good shape financially.  In part this lack of ambition is because of the council’s decision three years ago to direct budget savings toward tax cuts rather than toward spending on D.C.’s neediest residents.  The D.C. Fiscal Policy Institute is proposing a “pause” in this approach and calls on concerned organizations to sign this letter to D.C. elected officials:  https://tinyurl.com/kcacw8y.

In line with the mayor’s priorities, the Department on Disability Services (DDS) has presented a steady-state budget representing only a 1.4% increase over the 2017 approved budget.  It’s a businesslike proposal that provides for continuation of core services.  Here is Andy Reese’s testimony which he presented at the April 25 hearing on the DDS budget: https://tinyurl.com/kcmv5kh.  You can view the entire hearing before the Human Services Committee on the D.C. council website, www.dccouncil.us.  I was out of town on the 25^th, but yesterday I submitted my written testimony - https://tinyurl.com/ld8ytcb – which expresses concern (as did others) about the continued failure of the mayor and the council to rectify the continued exclusion of developmentally disabled people without an intellectual disability from eligibility for waiver services.  Questioning by committee chair Brianne Nadeau on this subject, and Andy Reese’s response to her, focused exclusively on the cost issue, but here we are facing a budget surplus, so If not now, then when?

Andy told the committee that creating an Individual and Family Services waiver – focused on services with a lighter touch than under the present waiver - will lay the groundwork for plans to extend eligibility for Medicaid supports to the broader population of citizens with developmental disabilities in D.C.  DDS is currently focused on amendments to the current waiver which it will present to the federal CMS (see my page on acronyms for explanation) for approval in August.  (Incidentally, here is today’s Power Point presentation on the proposed amendments - https://tinyurl.com/lppupr6  - and comments are due back to DDS by May 21.)  Once this is done, DDS will finally turn its attention to developing the IFS waiver, which has long been in the works and will probably take years before it has CMS approval.  The way I see it, by the time the IFSS waiver can show a track record of lowered costs to “justify” expansion of Medicaid eligibility, another five years at least will have passed.  Meantime, folks with autism and other developmental disabilities in need of supports, along with their families, will simply be fending for themselves. 

It’s obvious that this issue doesn’t have priority for elected officials at this time.  Personally, I think it’s high time for local organizations such as Quality Trust (QT), the Developmental Disabilities Council (DDC), the Georgetown UCEDD and Disability Rights D.C. to get organized to push DDS on this, because things are simply moving too slowly for those who are outside the system.  Lip service is no longer enough.  And yes, I’m on the QT board and recently named to the DDC, so both will be hearing my views on this subject.  

Building Community

I’ve written before about the importance of building circles of support.  All of us struggle to find the best way to ensure a rich life for our family members throughout their lifespan, and to provide the smoothest transition for them once our own lifespan is over.  D.C.’s Supporting Families Community of Practice (https://dds.dc.gov/page/dc-supporting-families-community-practice) has hosted quite a few discussions and training sessions on this theme, and helped many people and their families think through the best way forward for their particular circumstances.  Some of us are more fortunate in this regard, with immediate family or local relatives ready to help out along the way, and perhaps to step in once we’re gone.  Some have friends or church communities that can pitch in as well. 

Some also turn to intentional communities, like those created throughout the country by various groups of people who have common interests and want to socialize and share day-to-day responsibilities in a close living situation.  Over the years I’ve seen a number of efforts by families in Maryland to launch such communities on behalf of their adult children with disabilities, and a few have made headway.  Sooner or later though - particularly if they’re hoping for Medicaid funds to support some of those involved - they’ve had to make sure they aren’t working just to create communities of people with disabilities, but rather to facilitate their integration into the community as a whole.

This isn’t as straightforward as it sounds,though.  Just making sure people are living scattered among apartment buildings across the city is not enough to ensure community integration, as many with and without disabilities know very well.  This can still be a lonely and isolating way of life, especially since our society as a whole is still so far from enabling full participation by people with disabilities – in employment, social activities, and truly fulfilling opportunities to contribute to their communities.  So it’s easy to see why creating intentional communities has some attraction, and the concept shouldn’t be dismissed out of hand.  The crucial thing is not to be driven by parental fears or misgivings, but rather by what the person involved wants.  That way, I think it’s harder to go wrong.

A new group in town is grappling with how to forge intentional communities, both in D.C. and over the line in Montgomery County.  It’s not for everyone, and the families involved in its launch have brought personal resources to the table in order to get the process going.  Modeled on community-building efforts by parent groups based in Illinois, Integrated Living Opportunities, or ILO (https://www.ilonow.org), is forming clusters of families who provide mutual support to one another while helping facilitate social opportunities for their family members.  In some cases this may also involve people’s choosing to live in the same building or near one another and benefiting from some shared services, as has already happened with one of the Maryland groups.  ILO is also looking at ways to make sure solid supports will be in place for people when their parents or other family members are no longer around.  Some people involved in ILO have qualified for services under D.C.’s Medicaid waiver while others haven’t, but the organization is working with local providers and other agencies to make sure community integration stays in the forefront of their planning for everyone. 

Even though ILO is in its early days yet, it’s positive to see that D.C.’s disability community is maturing and expanding in some new directions as we move beyond Evans and find new ways to work together on issues that concern us all.

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.