Thursday, September 25, 2014

Where We've Come From

In this post I’d like to start filling in some of the history of the system for people with developmental disabilities that we have in the District today.  There’s been a lot of legal involvement in this area, and I’m not a lawyer, so I’m going to keep as much as I can to the essentials. 

Forest Haven is really where it started.  This was an institution opened in the 1920s in Laurel, Maryland, to house (some would say warehouse) District residents with intellectual and developmental disabilities.  Like many of the large institutions of its type and era it did a poor job, but for a half century it was allowed to continue in existence without getting much public attention.  Then in 1976 Harold and Betty Evans, on behalf of their daughter Joy who resided there, brought suit against the city over the deplorable conditions, and this led, in 1978, to the first of many “consent decrees,” or legal understandings between the court and the District government, concerning changes needed in the way the District was treating people at Forest Haven.  The idea was gradually to move people out into better living situations while at the same time improving conditions at Forest Haven.  At the same time, this flurry of attention to Forest Haven and the Evans case also led to political action in 1978, in the form of a law passed by the relatively new (after enactment of home rule in 1974) D.C. council, which, with only minor amendments, remains the law still on the books as the basis for provision of services in D.C.

After all these years, the Evans case continues to dominate the way in which services are provided in the District.  A whole series of further consent decrees have been issued since 1978, including one in 1991 that closed Forest Haven once and for all and moved out the last group of people still living there, and the most recent one in 2006 that established the Department on Disability Services.  Huge amounts of legal ink and major efforts by D.C. disability advocates have brought us to the present day, when the District appears close – within a few months most likely – of meeting the final requirements under Evans and being out from under court oversight.  Although there have been system improvements and also significant efforts to update the District’s 1978 legislation - most notably the gargantuan but ultimately unsuccessful effort to obtain passage of the Developmental Disabilities Reform Act in 2010 - it’s truly the conclusion of the Evans case which will open the door to the possibility of real reform of the D.C. system.

So we’re very near a crossroads, in terms of the opportunity created by the closeout of the Evans case, to launch a new chapter in the way the District delivers services to its citizens with developmental disabilities.   That doesn’t mean it’s an easy road ahead though – far from it.  In some of my future blogs I’ll talk a bit more about the ways in which the history complicates the way forward, as well as other hurdles that will need to be overcome. 

Saturday, September 20, 2014

Getting Rolling on Advocacy

Getting Rolling on Advocacy

This post will be brief, and is mainly to alert folks that the DDS-sponsored Supporting Families Community of Practice is beginning to be a more active and promising forum ( for information).  I attended much of the session on September 17, at which the main focus was on getting parents to organize on disability issues and to advocate with local authorities on shared concerns.  Laura Nuss, Director of DDS (see my August 11 post) was there, and she spoke about possibilities for advocacy around future legislation with respect to support for people with developmental disabilities, such as alternatives to the current court-commitment process for most D.C. Medicaid waiver recipients and funding an expansion of coverage beyond those with intellectual disabilities.  There was also a very good presentation on advocating for system change in D.C. by Diane Lewis of Alta Consulting.   Based on the turnout and the substantive focus of this session, it’s clear that things are starting to bubble and there are people ready to get more active, but efforts need to be focused in order to make a difference.  With the number of people in D.C. who are not being served currently, for reasons having to do with the history of service provision in D.C. (more about this in upcoming posts), I believe this deserves a major push from all of us, with our council members as well as the new mayor, so that a broader array of people with developmental disabilities and their families get the support they need. 

I’m developing questions to send to the three mayoral candidates with respect to their perspectives on issues of developmental disability in D.C.  If you have thoughts you believe should be reflected in the questions I submit, feel free to weigh in – click below on “No comments,” and make it one, two, three and more comments.   I’m proceeding, but will welcome your ideas.

And while you’re at it, make sure you go to the bottom of the blog and select “Follow by email,” so you can see future posts with less effort. 

Monday, September 8, 2014

It's Far from Person-Centered Yet

From my last entry you might think I’m very mellow about how the D.C. system is progressing.  But having the right long-term goal doesn’t mean that all is well in the here and now.  This still is a system that is falling well short of making person-centered planning, much less person-centered implementation, real.  Much of the time the service coordinators and provider staff are chugging along, holding the meetings they need to hold, doing the paperwork they need to do, making sure procedures are followed as their organizations demand.  Getting the different actors to come together and coordinate around the needs of a particular individual is a different kind of challenge, and too often secondary.

When our son first began receiving services in June, there were many meetings that had to take place in a short time.  This was even more true given that his annual Individual Support Plan (ISP) was due for revision in early July.  DDA and providers whipped into action, scheduling meetings at the times most convenient for them, then “inviting” our son and us with little or no lead time.  I pulled myself out of my sick bed, and my husband reorganized his work day, in order to accommodate their timing.  Worse, they had no understanding yet of our son’s anxieties about meetings, and we had to watch him grow increasingly overwhelmed as people peppered him with questions and talked over one another.  In one particularly challenging meeting he left the meeting with an aide and took hours to calm back down.

What left us even more amazed was that in the planning process, he was treated as though he was born the day he began receiving DDA services.  Everything we know about our son’s first 21 years, all the information shared by the school he was attending until mid-June, were set aside while the first impressions of staff during his ten days with them were taken at face value.  This institutional arrogance, even if unintentional, was infuriating and did not serve him well.  We had to be assertive, and more, in order to get anyone to pay attention to what made him tick as a person rather than making instant assumptions based on little information.

It’s also taken tremendous effort to get his two providers to work well together.  Early days were full of arguments over logistical issues such as meeting points and times for his “handoff” between supported-living and day services.  And establishing any time, ever, for him to be with family rather than providers during a weekday for medical or other appointments has necessitated endless negotiation, while last-minute cancellations of his day services have occurred with annoying frequency.   And heaven forbid that both providers should use the same calendar to avoid scheduling conflicts.

The “bubble” within which DDA and its service providers operate is so self-contained that they scarcely realize anyone exists outside its boundaries.  We’re still struggling to get his supported-living provider to realize  that our son’s doctors might not be immediately available at whatever time they choose to telephone or want to call a meeting – or to get anyone to imagine that his father or I might have a competing work or other priority that prevents our immediately jumping when they say jump.  Somewhere behind the scenes is probably a demand from DDA of which we’re not fully aware, but this only serves to prove that the requirements are rolling out from DDA rather than keeping our son at the center.  We also still wonder, given the limited pool of 2000 or so people that DDA supports, how he will be able to maintain contact with his few social contacts outside that very restricted pool, make new friends, or someday live with someone who isn’t also living inside this bubble. 

Even realizing that our son is doing remarkably well within today’s constraints, these are tremendous hurdles that loom in the future for people with disabilities in D.C. and elsewhere.