Tuesday, January 31, 2017

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.

Thursday, January 12, 2017

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:


Definitely worth a listen.

Monday, January 9, 2017

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.