Challenges with the care of people who have developmental disabilities: A case study of recycled history in Western New York

Over the last month there have been several stories in the news about the shared 'decision' to close down the Ridge Road Intermediate Care Facility that is operated by Baker Victory Services.  The 'decision' was actually prompted by conversations between the NY State Office for People with Developmental Disabilities (OPWDD) and Baker Victory administrators.  In the recent past there have been reports of problems at the Ridge Road site including failures in quality of care.

New York State monitors performance on quality indicators of these facilities.  In June 2011 Baker Victory Services was placed on Early Alert Status for deficiencies in care and this was followed by imposition of a $2000 fine in January 2012 due to ongoing concerns.

It is difficult to assess how serious the violations are without more direct knowledge of the findings.  Of course any dereliction of responsibility to provide proper care is a concern, but family members of those housed in the facility are expressing their belief that the care is appropriate and of generally high quality.  From superficial appearances, although there may have been concerns, these do not seem to be of Willowbrook proportion.

Any time that there are alleged failures in the quality of our care for people who have developmental disabilities we have an opportunity and in fact an obligation to fully investigate those failures.  However, in this instance I have some questions because of the apparent disconnect between the concerns of OPWDD and the general support and concern of families who are generally satisfied with the care that is being provided.

What is the truth?  It could be that the parents are misinformed or not fully informed and that the care at this facility is poor.  That is a possibility that must be considered.  Or it could be that the care is good and that the dizzying complexity of these people's needs combined with the dizzying complexity of the bureaucratic system in which it all operates is making it difficult and perhaps impossible to provide appropriate care.

I don't know what is true - like I said I am only some guy in the community who cares about the issue and reads articles and attempts to get to some source documents.  Here is what is written in the OPWDD fine letter:

A 60-day letter was issued on September 26, 2011, for seven incidents where individuals did not receive oxygen per physicians’ orders. The Plan of Corrective Action (hereinafter POCA), dated November 4, 2011, provides that there will be a “check of the oxygen tank and oxygen tubing throughout each day, by all staff, after any oxygen source transfer is completed and/or any hands on activity is completed, which is documented on the Medical Monitoring Oxygen Equipment Check Form and which includes a verification sign off by second staff.” The failure to follow this measure detailed in the POCA resulted in a 60-day letter, dated December 23, 2011, when an outside vendor was allowed into the home to refill the liquid oxygen tanks without the assistance or involvement of a staff member. A fine in the amount of $1000.00 is imposed for the failure to follow your POCA with regard to oxygen administration.

So when I read this I am a little unsure if people who needed oxygen did not get it - and they were gasping for air and great harm and discomfort was caused.  Or maybe someone didn't get a second signature on verification form. There is kind of a big difference between these scenarios and that is why it is difficult to ascertain the severity of the violation.  Of course all violations have a degree of severity because obviously we have regulations in place for a purpose.

An important consideration that we must not ignore is history.  In 2005, almost exactly seven years ago, ANOTHER local human services agency was having a difficult time with meeting established care standards.  The Cantalician Center for Learning, which is a similarly structured organization, transferred seven group homes over to Baker Victory Services. 

People outside of Western New York need to know that both agencies have deep roots in the Catholic Church and the local diocese.  Both agencies have similar missions regarding charitable works and how they hope to serve the community.  These are not profit motivated institutions that can legitimately be criticized for providing poor care.  Being a religious-based institution certainly doesn't inoculate you against anything but when you start tossing around Father Baker's name in this community it still resonates with people and it still MEANS something culturally.  People trust these agencies, and for the most part I have no reason to believe that the trust has been violated when it comes to the work of these agencies.  That contributes to the difficulty in being able to understand why there are repeated concerns about meeting performance standards.

So if Cantalician had difficulty meeting the standards seven years ago and transferred some responsibilities to Baker Victory, and then if Baker Victory has difficulty meeting the standards and is going to transfer some responsibilities to someone else - I think we need to ask some questions.

Of course the immediate questions have to do with the performance itself within these agencies.  But then we need to balance that against the support that is verbalized from the family members.  How does this square???  Or is there something more inherently incorrect about the way that these services are structured within a larger context?  Are the requirements and regulations too burdensome?  If our culturally iconic institutions fail at providing care within these systems does that mean that we should consider looking also at the systems and whether or not ANYONE will be able to provide "proper" care?

Big questions - I have no answers - but I think we need to do more than just spin the wheels of history and watch this repeat again in another seven years.  That would be the biggest disservice to the people who have developmental disabilities and receive services from these agencies, and indirectly, from us all.

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