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.