One Year In: Personal

Even without a child in school anymore, fall is one of my busiest seasons.  But although I haven’t posted to my blog in a month, I’ve been thinking hard about how things have unfolded over the past year.  It’s actually been over a year - 16 months since my son began receiving services from DDS and 14 months since I started my blog.  But even if my timing’s a little off, the point is that it’s time to take stock.  In this blog post I’ll talk about where things stand for my son and our family; in the next, I’ll talk about policy issues.  And sometime soon I plan to post a page of acronyms to help you wade through the alphabet soup without having to go back to earlier posts.

So, on the personal front:

-          Supported living.  You know if you’ve been reading my blog for a while that our son recently transitioned to a new provider agency for his home support when the agency we’d chosen in 2014 sadly left D.C. after a little over a year (“Sometimes It’s Personal,” 8/4/15).  It’s too early to make a firm judgment about the quality of his ongoing care, but I can say that the promise of continuity hasn’t come true.  The new organization has changed the entire management team overseeing his apartment and his ISP, including one direct support professional (DSP) who was especially close to him.  Fortunately a few of his DSPs remain the same – for now – although this is small comfort since it could change anytime, as we’ve just been reminded.  Still, we believe he’s safe and has staff who mean well by him, and he has a reasonably compatible roommate as well.  We just wish we could rely on the promises made by both DDS and the new agency about a "seamless" transition.

-          Individualized day services.  IDS was a new option last year when our son began receiving services in DC.  Our experience is a clear demonstration of the difficulties this day program has had in delivering for the people who’ve chosen it.  It was originally intended as an alternative to work or other fixed-location day programs for people of retirement age who still wanted to be occupied productively during daytime hours.   Increasingly it’s also been chosen by people such as my son, who are transitioning from school and still in a period of exploration befitting their age.  Over the past year his IDS programming has helped our son get to know the D.C. community again, and better, after a four-year absence.  He has had a caring and sincere community navigator, and has sometimes had a companion who has obliged him to develop skills of compromise and collaboration.  However, our son needs an individualized but structured program of day supports, and the only structure he’s had so far has come from the courses our family has identified and enrolled him in.  Given the number of daytime opportunities available, and our own efforts to bring options to the provider agency’s attention, we’ve been hard pressed to understand the lack of creativity shown in developing an individualized program to address those needs.

-          Skills development and employment.  On this subject I refer you to my earlier post (“It’s About Work,” 8/21/15) which describes our discouraging personal experience with trying to cut through the bureaucracy and get the support our son needs to prepare himself for competitive employment.  A ping-pong match between DDA and RSA isn’t the way to help a person move forward in life.

Someone who’s been a very good friend to our son and our family told me a few months ago, “You don’t know it yet, but you’re at the beginning of a long process.”  I begin to understand what she meant.  But I’m an impatient person, and I’m continuing to push.  I hope you will, too.

So Long, It’s Been Good to Know Ya

Early this summer I wrote in a blog post (“Where’s the Follow Up?” 6/17/15) about the arrival of the new DDS deputy director in charge of the Developmental Disabilities Administration, Holly Morrison.  I had been told there would be a press release announcing her arrival, but I never saw one.  And when she left in August, it was treated like a state secret.

I had met with the director and her new deputy on July 31 about my son’s transition to a new provider agency (“Sometimes It’s Personal,” 8/4/15), as well as some of the policy-level issues I had raised in the June post I cited above.  It was a pleasure to see that there was going to be someone on the job who could take some of the burden off the DDS director and give DDA management the attention it deserves.  Following that meeting, Ms. Morrison jumped on a couple of important matters, about which she last communicated with me on August 17.  I emailed her back on August 18 and again on August 19, and when I got no response and saw others in DDS were taking her off the addressee list I began to wonder.  On August 26 I reached out and asked someone I thought might know whether she was on vacation or was already gone.  Sure enough, I learned she had left the week before.

So Holly Morrison came, and left.  Fast.  Her predecessor, Cathy Anderson, lasted much longer but also disappeared very quickly.  These quick departures are a matter of concern.  Too much is riding on the DDS director herself.  She needs a reliable deputy to oversee the DDA side of the operation so that she can look to the bigger stuff.  I don’t know why two deputies have moved on so quickly, and it may be a little embarrassing that Holly Morrison left after only two months, but that’s no reason to keep it secret.

There I was, sending emails to her, and no one in DDS bothered to mention she was gone.  The director and others included on my emails to Ms. Morrison were simply silent about her departure for days on end.  When I learned she had left and raised this silence with the director, Ms. Nuss told me she does not “post such things on the website nor send personnel announcements to families.”  There was no out-of-office message from Holly Morrison’s mailbox.  Is an out-of-office message a “public announcement?”  How long was I, and anyone else trying to reach her, supposed to wait before being told she was gone?  We were notified before our son’s service coordinator left recently, but the deputy director was gone for days and there was no communication.  This isn’t a matter of “personnel announcements to families,” but rather a matter of DC government transparency – or lack of it. 

And, in fact, I do believe that the comings and goings of someone as senior as the deputy director of an agency deserve a public announcement – on the website, in a press release and any other way DDS can get the news out.  Why wouldn’t DDS do that?

It's About Work!

A quick personal note:  Some of you who know our family have reached out with words of reassurance and comfort about the DDA transition we’re going through.  I appreciate that.  But I write my blog to shine a light on what isn’t working well, and I don’t want anyone to think we believe we or our son are the unfortunate ones.  Far from it.  Services are mostly going well for him, and because we are in his life we make sure of that.  So I hope I never sound like a whiner.

Now, down to business.  Or to be more specific, down to – work.  Because DC is an Employment First!  (http://dds.dc.gov/page/employment-first) jurisdiction, and that means we collectively want to be doing everything in our power to get anyone who wants employment into a job.  That’s the headliner, but oh boy, are there problems getting there – and some of those problems are definitely avoidable.  Again I’ll draw on our experience as an illustration (not whining!).

I wrote several months ago (“DDS:  Intentions Versus Reality,” March 1) that the minute I mentioned a meeting to talk about my son’s potential job interests, his then-service coordinator created roadblocks, insisting he had to fill out a bunch of paperwork and hand things over to RSA before we could even say the word “work.”  But that’s just wrong.  For one thing, there were plenty of team meetings that included the whole team, RSA included, when a previous service coordinator was on the job.  Second, our son receives Individualized Day Services (IDS), and DDA policy on IDS (http://dds.dc.gov/publication/individualized-day-services-final-rulemaking) specifically states that IDS should provide “Highly individualized, structured activities that  emphasize social skills development, and/or vocational exploration, and life skills training, within an inclusive community setting.”  Still, no matter how much we protested that it wasn’t necessary, both the service coordinator and his IDS provider pushed for a referral to RSA.  No harm done, we thought, so we went along with it.

The good side:  He got referred to a much more active and engaged vocational specialist than the one he previously had.  The bad side, which swamped the good:  He has a very specific type of interest, in many ways driven more by characteristics of the job site and comfort with the people he’ll be working with than by the general goal of employment.  The process of “helping” him, though, was driven by meeting after meeting, leading our overwhelmed son to become more and more anxious and leading the RSA specialist to come back and say she had to close his case since he was saying no.  Not too surprising.  In fact, completely predictable.

We had been asking for his slight, budding interest to be encouraged, approached creatively, within the IDS guidelines.  It was DDA and the IDS provider who insisted instead on opening the RSA door, and it was premature.  He needed to be led along, given an opportunity to explore the type of job site in which he had expressed possible interest – maybe through some volunteering, or through some structured discussion with people at likely workplaces.   Instead he got meetings and paperwork, which shut down the glimmer of interest he had expressed and gave him cold feet.  This narrow-minded approach isn’t the path to Employment First, and it set him back rather than moving him forward.  All he felt was a buildup of pressure and anxiety – the last thing he needed.

I haven’t written that much about RSA because so much of our experience has been on the DDA side.  I’ve heard testimony and had conversations with any number of you whose problems with RSA have had more to do with efforts on post-secondary education, but our experience suggests the problems are at least as acute when someone needs to get a toehold on the first rung of competitive employment.  Not everyone is suited to RSA’s current “off the shelf” employment options for people with disabilities.  Finding the right option, especially for a young person at the cusp of adulthood, requires some real coordination between DDA and RSA, some creativity in developing an interest into a real job option – and the ability to communicate with the person being served not in the way the bureaucracy dictates, but in the way that works for them.  

DDS Director Nuss Responds

After my last post I was asked by a reader what could be done to help strengthen and retain quality providers.  I posed that question to DDS and received a lengthy response from the director.  Surprised by the comprehensiveness of her message, I asked if I could quote her in my blog, which she agreed to.  So here it is (her words in italics):

I fully support your sentiment that we all need to demand high quality services from those who provide supports to our DC residents with intellectual disabilities.  It has to be something everyone embraces and that is always the hard part as you know.  We first have had the task of trying to raise expectations and providing training and education to our staff, providers and stakeholders about what “good services” actually means and looks like.  For D.C. that meant more than a clean home, food to eat and compassionate care.  Initially when I got here I think people were happy to gain that.  For the last eight years we have transformed our service system to one that at least expects and requires in rules and consequences that supportive and habilitative services be delivered, good healthcare be coordinated and maintained and health and safety be protected.  In the last two years we have immersed our staff in what Person-Centered Thinking really means, what our role is to advance rights, self-advocacy, choice and meaningful community inclusion.  And of course the Family Support Community of Practice has opened our ears and solidified our commitment to real stakeholder engagement and leadership by families and people we support to really shape the system of the future- today.

But despite this progress, the day to day reality for someone is only as good as the staff and organization is that provides the supports and services; and good outcomes only achieved when the people we support, family members, government personnel, community members and the provider agencies all demand, each and every day, that higher expectations are understood and valued, are capable of being delivered, and conversely low expectations are rejected in a loud, clear and consistent voice.  If we all worked each day to make that day an everyday, then we would feel confident that the good providers would grow, others would come and stay and those who don’t embrace the values and have the capacity to manage to those values would truly wither and die on the vine. 

As always, thank you for your advocacy.  I am confident D.C. will continue to demonstrate progress and its firm commitment to becoming a better, person-centered, inclusive and outcome orientated system of services and supports each day.

I don’t know if this makes me feel any better about the unintended transition to a new provider that we’re experiencing, but in general I agree with her that continued improvement will take effort from all of us, on a lot of fronts, and there’s still a long road ahead.  On Tuesday I’ll reach the one-year mark for my blog, and I’m sticking with it.  I hope to find you on the road with me.

Sometimes It's Personal

If you’ve been reading my blog for a while, you know that I stay away from personal specifics concerning my son.  Sometimes, though, our particular experiences with DDS or provider agencies can help illustrate the challenges that may face families even once a person is receiving support.  This is one of those times.

I’ve written in very positive terms about the provider agency that’s been supporting my son in his home since June of last year.  I had heard about their work in Pennsylvania and was glad they were coming to D.C.  Selecting them not only felt right for our son, but also like a positive step in helping DDA (the arm of DDS that administers the Medicaid waiver for persons with intellectual disabilities) to attract new provider organizations.  And while no agency is going to deliver 100% satisfaction, our son has seemed well satisfied and our family has had a very cooperative relationship with them based on shared values and a common vision for his future.

Two weeks ago we were hit in the face with the news that they were going to have to leave D.C., effective September 1.  Throughout the past year we had heard that referrals were going much more slowly than they had originally expected.  To a significant extent, this has been due to the fact that agencies with a poor record of support in D.C. have been fighting efforts to close them down, leaving often-vulnerable individuals in their care while the process plays out.  Our agency was ready, willing and able to receive a good number of those people, but time ran out.  The high degree of professionalism they brought with them, involving a great deal of mandatory training and standards for staff that went beyond DDA requirements, also required a level of budgetary outlays that they could not sustain if DDA was not referring new people to them.  So off they go.

We had known the news for ten days before we received official notification from DDA.  Even our service coordinator learned the news through the grapevine a week before his management communicated it.  Needless to say, it’s been a rough two weeks, and foremost in our minds is ensuring that our son, his roommate and others who have received such a high standard of service will not now be left high and dry. 

We’ve been assured of a smooth transition to another provider agency that hasn’t been working in D.C. for much longer than ours had.  We know little about the new organization, and so we remain apprehensive.  Time is very short, and we have to hope for the best.  The outgoing agency, the incoming agency, and DDA all have told us that existing local staff will remain in place.  Based on this, we’re providing our son all the reassurance we can that there won’t be disruption in his life.  Abruptly shifting to another provider at this stage would, we fear, only create the disruption we so much want to avoid.

Besides personal concerns, though, I think about what this means for efforts to ensure all providers in D.C. operate responsibly and professionally, and to see that D.C. is a welcoming jurisdiction for providers coming in from out of state.  Put simply, the D.C. provider community is too much of a “closed shop,” and those of us who care need to push to make sure everyone knows we have high expectations which must be met.  D.C.’s citizens with intellectual disabilities deserve no less.

Celebrating the Anniversary of the ADA

This week marks the 25^th anniversary of the passage of Americans with Disabilities Act – a historic event that continues to benefit all of us and those we care for.  The coming week is full of ways to mark this important landmark, and here are a few:

It’s not too late to attend the Quality Trust cruise on the Potomac, Sunday evening, July 19.  Tomorrow!  This is Quality Trust’s major annual fundraiser, so it’s a wonderful way to kick back and enjoy yourself while helping out an organization that does so much for folks with developmental disabilities in our community and beyond.  Here is the link for tickets: http://www.dcqualitytrust.org/category/news-events/  I’m on the Quality Trust’s board, and I’ll definitely see you there!

Here’s another:  On Tuesday, July 21, 10:00-11:00 a.m., at the Department of Labor, 200 Constitution Avenue NW, there will be a special conversation with former senator Tom Harkin, who was a major champion of the ADA when it was passed, and a spirited champion of persons with disabilities throughout his many years in the Senate.  To RSVP:  http://www.eventbrite.com/e/the-next-25-years-of-the-ada-invitation-registration-17591984098, or watch it live at http://www.dol.gov/dol/media/webcast/live/.

There’s a whole variety of DC- and federally-sponsored events going on in the next couple of weeks that the Department on Disability Services has put into one list:  http://dds.dc.gov/sites/default/files/dc/sites/dds/release_content/attachments/DDS_ADAFlyer_R2_0.pdf.  The Smithsonian in particular is hosting a large number of events and exhibits:  http://www.2540celebration.com/schedule-of-events/.

And finally, if you do nothing else, I hope you’ll read this awesome and touching testimonial by Mat McCullough, executive director of D.C.’s Developmental Disabilities Council:  https://usodep.blogs.govdelivery.com/2015/07/15/happy-anniversary-to-all-of-us/#more-9686.  He says it all, and so very well.

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.

Setting the Record Straight

I’ve been writing this blog for nine months now, and I find there are things that don’t look completely accurate anymore.  Since I want to give out correct information, in this post I want to provide a few updates:

• In several posts I’ve said that the closeout of the  Evans lawsuit was nearly complete.  In September I said it was only months away, but things are unfortunately moving more slowly than expected.  In her most recent budget testimony Laura Nuss specified that DDS still has six of the 70 so-called “outcome criteria” to resolve before the case will be closed.  Nuss says she has made a commitment to the new mayor, and she likewise promised the council last month, that this will happen by fiscal year 2016 (which will run from October 1, 2015 through September 30, 2016).   Immense progress has been made over the past year on this 39-year-old lawsuit, but unfortunately the time has not yet come for court oversight of D.C. disability services to be lifted.

• I’ve also spoken a number of times about a new waiver, the Individual and Family Services (IFS) waiver, which would provide more flexible in-home supports than the current waiver does.  (This wouldn’t change the eligibility requirement of intellectual disability.)  There’s mostly been silence on this waiver for months now, but the last I heard DDS was going to turn its attention back to it once the state transition plan on compliance with the federal rule on home and community based waivers had been submitted (see March 10, “Why Friday the 13th Matters”).  The transition plan went to the federal Center for Medicare and Medicaid Services in March, so I hope we’ll be hearing soon about progress on the IFS waiver.  If someone from DDS can provide an update, feel free to comment in response to this post!

• I’d also like to provide some clarification about my own information concerning the likely number of people with developmental disabilities living in D.C.  In “The Way Ahead,” January 26, I used the proportion of Americans with developmental disabilities nationwide to estimate that there should be around 10,000 D.C. citizens with a developmental disability.  Since then I’ve become aware of a report commissioned by DDS and the DDC in 2011 that approached this in a more analytical way and came up with a number closer to 9,300.  Just this week I’ve heard from a local disability group that the number probably falls within a range of 8000-10,000 D.C. citizens.  Even though the overall number may turn out to be slightly lower than the 10,000 I estimated – we really don’t know what the right number is – and even though not all of those people would require Medicaid waiver services, it’s a long way between any of these numbers and the less than 1700 people now getting services from DDA under the waiver.