By Popular Acclaim

It’s not often I’m asked to blog about a particular subject.  This time, though, I’ve had readers in contact with me on a matter to which I hadn’t paid a lot of attention at first, and I’ve been convinced to put some views out there.  So thanks to those who’ve pushed me - this one’s for you.

Some readers may have seen the email from DDS inviting you to the upcoming “No Wrong Door Stakeholder Feedback Session.”  For those who didn’t see the email, the session is this coming Wednesday, July 1, from 1:00 to 2:30 at DDS headquarters, 1125 15^th St NW, just north of McPherson Square.  The purpose is described as follows:  “Do you or a family member receive services and supports through the Developmental Disabilities Administration (DDA)? Have you ever applied for services with DDA? If so, we want to hear from you! The District is in the process of getting feedback from District residents who have applied for or are currently receiving long-term services or supports, either for themselves or their family member.  We want to know what worked about the process of getting services and what didn’t work, so that we can start fixing it. Please join us for this feedback session!” 

I certainly encourage anyone who is interested in giving feedback in this way to attend, by all means. Contact Jestina Heroe (jestina.heroe@dc.gov) to RSVP.

But I wouldn’t be writing this if I weren’t concerned. 

First, as usual, I’m concerned that there doesn’t seem to be a vehicle for participation by those who can’t be available in person at the assigned time, and (I’m a broken record on this subject) there always needs to be a way for people to provide input if they can’t be there.  Second, though, in this case I’ve heard of quite a few folks who, available or not, aren’t so eager to come to DDS and discuss their experiences.  Their interactions with DDS have been and in some cases continue to be adversarial and unpleasant, and they’re nervous that openly discussing their experiences may only result in a worsening of relationships, or even of the services they or their family member are receiving. 

This leads me to suspect that most of the folks who’ll show up next Wednesday are those who are pleased with their experience and satisfied with the services they’re getting.  Those with misgivings (or a scheduling conflict) are likely to stay away. 

So let me speak to the well-intentioned DDS staff – many of whom I know from the Supporting Families planning committee – who are putting this together:  If you limit the opportunity for feedback to what you hear in Wednesday’s session, you won’t get the valuable input you’re hoping for.  I know it’s more difficult to arrange, but if DDS is really looking for honest feedback and intends to take action in response to it, there needs to be a vehicle for people to provide feedback without identifying themselves.  Best of all would be an anonymous standardized survey, but if not that, find some way for the people who don’t want to step forward in person to be heard.  They’re the ones most likely to give you the information you really need to hear.

Where's the Follow-up?

I write you a bit frustrated today on several fronts, and although it doesn’t add up to a single substantive theme, I’ve decided it all fits into one irritant:  lack of follow-up.  And that is, actually, a theme in itself.  So let me launch:

The new DDS deputy director for the Developmental Disabilities Administration (DDA) is named Holly Morrison, a former executive with Mosaic (http://www.mosaicinfo.org/). Welcome aboard, Ms. Morrison, although I wish it were DDS and not me announcing your arrival.  Three weeks ago I was actually promised a press release when the new deputy came on board, but – no follow-up.  Still I managed to find out about her appointment, even though I can't readily find it on the DDS website either.

After my blog post on May 20 (“Setting the Record Straight”), I did, in fairness, get some immediate updated information on the estimated headcount for DC citizens with developmental disabilities, but I was promised information on the other issues I raised and received no follow-up.

I’ve spoken favorably in the past about initiatives being taken in the Supporting Families Community of Practice, and based on the planning meeting, I announced in my blog on April 3 that the next CoP meeting would take place in June, with a focus on community supports and an exciting keynote speaker from the Bowser administration.  I missed the June 3 planning call, but when I found out what had happened on the call, I learned there was no June meeting planned and no clear plan for follow-up.

On January 5 (“DDS New Year’s Resolutions”) I noted the need to “facilitate payments to DDA by individuals’ designated representatives.”  Representative payees trying to do the right thing by sending monthly payments to DDS have to write physical checks which must be transferred among offices and which get lost about a quarter of the time.  If these checks aren’t cashed by the end of the month the individual’s asset limit for Social Security can be in jeopardy.  This is a disincentive to Supported Decision Making since it can make folks give up and transfer representative payee status to DDS.  I’ve been pushing for nearly a year to get DDS to establish a system for electronic transfer of these payments but…no follow-up.

I wish I couldn’t go on with other examples.  I could, but I’ll stop here.  Yes, OK, DDS has a lot on its plate.  Yes, OK, a lot has been accomplished.  Yes, OK, unforeseeable things do come up.  I’ve worked in a government agency, and I know. But then don’t overpromise.  But then don’t require requests to go to the top of the organization for remediation or response.  But then set priorities, focus on them, and really follow up.  The problem is chronic, and needs attention. 

Ms. Morrison - can you help?

Change is in the Air (but not quite enough)

The D.C. council is still chewing over the FY16 budget, but it looks as though DDS will make out all right when the council takes its final vote the middle of this month.  I’m glad to see this, although the budget hearing in April (“A Complicated Picture,” April 30) pointed up some real challenges on which I hope we’ll see significant improvement between now and the next performance review eight months from now.  Rumor has it that Laura Nuss soon will be getting a new deputy to oversee the Developmental Disabilities Administration (DDS/DDA), and that person will still have her work cut out:  wrapping up the Evans lawsuit, giving real meaning to person- (and family-)centered planning, determining what DDA itself can do to facilitate supported decision making, and – oh yes! – getting D.C. to reach those who do not get any coverage at all under the waiver. 

After my last posting (“Setting the Record Straight,” May 20), Erin Leveton (erin.leveton@dc.gov) was good enough to forward me an email from the National Association of State Directors of Developmental Disabilities Services (NASDDS), citing a study by the University of Minnesota that estimates the number of persons with developmental disabilities in D.C. (in 2013) at 9,632.  So my original estimate of 10,000 turns out not to have been that far off after all.  Still, when asked by Health and Human Services committee chair Alexander whether there is any legislation DDS will be submitting to the council in fiscal year 2015, DDS only said it would be seeking a little more flexibility on the definition of “intellectual disability.”  This (which may or may not really require legislation) may indeed allow a few more people who don’t fall strictly under the IQ limit of 69 or below to become eligible.  It doesn’t show the ambitious thirst for equity that disability advocates showed in 2009-2010, though, when they tried to get the Developmental Disabilities Reform Act (DDRA) passed by the council.  

With a new DDA deputy, at least DDS will have more high-level folks to focus on this critical issue, along with some of the issues raised in hearings before the Alexander committee this past spring.