Over the past months, and again this week, there have been awful, frightening stories coming out of the New York State developmental disability system, and in particular their institutions.

These stories have been highlighted by the New York Times and I would encourage you to go and read them, even though you won’t enjoy the experience.

There is no doubt in my mind, based on a lifetime of experience working both in institutional, community, and family based settings supporting people with diabilites that institutions by their very design are, at best, an inappropriate model for supporting people with disabilities.  However, while the environment undoubtedly contributed to the horrors in these stories, I really don’t think it is the sole casue.

The problem here is a complete lack of accountability and transparancy.  In fact I think that the two are so closely linked that they are almost the same.

When someone is able to deny that they saw something, knew something, or said something you end up with the situation where people are debating what it means to be hit by a stick, or whether something was actually or accurately reported.

A number of years ago, we had quite a cool poster out entitled “10 Reasons not to use Therap“.  Reason number 10 was “You want to be able to deny you saw it so you don’t have to take action.”  Once documentation is completed in Therap it is not going anywhere.  There may be a perfectly legitimate need to edit it or even delete it, but even if that is the case there will always be a full audit trail there showing what was there before and who did what to it.  You will also have a full list of who looked at it and when.

Not only do I find stories like these (which unfortunately are not confined to New York, or institutions) heartbreakiing and infuriating, I also find them increadibly frustrating as I know that there are simple, cost effective ways of providing tools that can stop this happening.

Take the following example from the story:

During one visit, an employee told the Careys to take home a duffel bag they had never used. They discovered a logbook inside the bag detailing startling changes to Jonathan’s treatment plan. Among other things, the school was withholding food from Jonathan to punish him for taking off his shirt at inappropriate times.

In this case, the family found out information (by accident) and immediately acted upon it.  How much better would care have been if the family saw all the documentation as it was written?

Was is most frustrating is that we and many agencies across New York and across the country know the answer to this and are actively making themselves more transparent and accountable while at the same time becoming more person centered, efficient, and effective.

When an agency uses Therap they have the option of giving controlled, recorded, HIPAA secure access to parents so that they can see exactly what is written about their child as it happens.  I have heard so many stories of how this not only improves the quality of supports, it also improves the relationship between the family and the agency.  If you’d like some examples, give me a call.

By using Therap, there are now 700 or so agencies across the country supporting more than 70,000 individuals who have taken steps to address the lack of accountability and transparancy that comes from keeping data hidden away in books and filing cabinets.  Combined these agencies are witing more than 1,000,000 progress notes each month in Therap (along with countless other items).  Each one of those notes is read on average 12 times.  That is 12,000,000 opportunities each month for someone to see something going wrong and address it.

No system in the world can completely prevent abuse from taking place, but by becoming open and accountable, while maintaining security and privacy, states and agencies can involve entire circles of support in the prevention effort.

:: Justin ::