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.