COFAR blog

[UPDATE: It was brought to our attention that a bill was filed earlier this year by state Rep. Carolyn Dykema of Holliston that would require that physicians, nurses, dentists, and other healthcare professionals receive training in treating persons with intellectual and developmental disabilities.

The bill (H. 1932) would also require the state to promulgate regulations to reduce disparities and discrimination in medical care provided to developmentally disabled persons.  The bill was referred last January to the Public Health Committee, which included the measure in a list of bills that were given a public hearing earlier today (Tuesday).]

A report provided to us by the state Department of Public Health exonerates Lowell General Hospital in the case of an an intellectually disabled man who died of an apparent heart attack in 2012 after having been sent home twice by the hospital without any significant treatment.

The DPH report confirms that the 51-year-old patient was discharged twice from the hospital in two days, and was pronounced dead after he was brought back to the hospital for the third time.

Despite the exoneration, the report appears to leave many questions about this case unanswered — particularly whether the man, whose identity is being withheld, may have received inadequate care because hospital staff was not properly trained in dealing with developmentally disabled people.

We obtained the latest version of the report after filing two appeals to the state public records supervisor.  The DPH first denied our request for the report entirely, citing the deceased man’s privacy; but the department later provided an initial version of the report after the records supervisor ordered it to do so in April.  That initial version was so heavily redacted, however, that it was virtually unreadable.

In a ruling on September 21, the public records supervisor ordered the DPH to produce a less redacted version of the report. We have received that version, which is more readable than the first version the department provided.  Still, every reference in the latest version to the resident’s physical condition when he was brought on the two occasions to the hospital emergency room remains redacted.

The report concludes that an allegation made by an unidentified person — that the hospital was “ill-equipped” to treat an intellectually disabled individual — was not valid.  In fact, the term for the man’s disability is redacted in the report, but we are assuming the allegation against the hospital was in reference to the fact that the man was intellectually disabled.

The report concludes that “appropriate care was rendered” and that discharge plans were appropriate and communicated to a staff member of the patient’s group home. There are no recommendations in the report.

The report states that the investigation of the incident was done over a two-day period in March 2012. The investigator or investigators interviewed the unnamed complainant, three nurses, three emergency department physicians, the hospital’s vice president of patient care, and the director of risk management.  In addition, the DPH reviewed the resident’s medical records, hospital procedures, the emergency department physician schedule, and the hospital’s personnel and credentials files.

While it may appear at first glance that the DPH investigation was exhaustive, we think a case can be made that the review was really somewhat cursory. It‘s hard for us to accept that the hospital did everything right in this case and that no recommendations regarding hospital policies or procedures were warranted, given that the man was not treated by the hospital in any significant way, and the outcome was his death.

To be fair, the report does state that a survey of the hospital was conducted under the authorization of the federal Centers for Medicare and Medicaid Services, and that no deficiencies were found.  The report doesn’t indicate when the survey was done. We assume that this was a separate licensure survey that the DPH periodically conducts of all hospitals in the state.

In this case, the man’s day program and group home staff were concerned enough on three separate occasions that they called 911 and had the man sent to the hospital emergency room. According to the DPH report, the emergency room staff did perform diagnostic testing and took the patient’s vital signs during the visits. During the second visit, a nurse also called the group home to ask for more information. All references to the results of the diagnostic tests and all references to the man’s vital signs are redacted in the report.

One troubling issue noted in the report is that it appears that a physician examined the patient when he was brought to the emergency room for the first time. But it appears that the man was discharged after the second visit to the hospital by a nurse.  There is no indication that he was examined by a physician during the second visit.

We think the report failed to substantively examine the specific allegation that was made in this case. This may reflect the fact that neither the health care nor oversight systems in Massachusetts or around the country seem to be very concerned about an apparent lack of adequate medical care provided to people with disabilities.

For instance it doesn’t appear that there are any federal regulations that specifically address the treatment of people with intellectual or other disabilities in acute care hospitals.  We couldn’t find any references to disabled patients in federal or state regulations governing licensure of acute care hospitals.

In its report on this case, the DPH cited three federal regulations governing hospital care, none of which appears to address the issue of patients with disabilities.  The federal regulations cited in the report require hospitals to have an “organized medical staff”; state that the patient has a right to receive care in a “safe setting”; and state that emergency department policies and procedures are “a continuing responsibility of the medical staff.” (42 CFR 482)

It’s not clear whether Lowell General Hospital has any policies for treating people with developmental disabilities. Based on studies we have reviewed, the lack of such policies and procedures is a serious problem in hospitals in this and other countries.

One study by BMC Health Services Research concluded that people with intellectual disabilities “are at risk of poor hospital experiences and outcomes.”  That study, which involved a review of papers written on the subject, noted that hospital patients with intellectual disabilities had a higher percentage of avoidable deaths than non-disabled patients due to misdiagnoses of their conditions (37 percent versus 13 percent).

A second study done for a group of disability advocates in California found that the inability to communicate their symptoms was a key reason that people with intellectual disabilities receive poorer treatment in hospitals than do non-disabled people. The study noted that those individuals are “commonly unable to identify pain, describe symptoms of illness, or articulate indicators of discomfort to physicians.”

It seems likely that the resident in the Lowell General Hospital case was nonverbal, although a statement in the report that appears to imply that the patient was nonverbal was partially redacted.

The California study, which was based on interviews with providers and advocates, added that in a “typical example,” one nonprofit executive reported that the provider had sent one of their group home clients to a hospital and the hospital sent him back home.  A couple of days later, the executive stated, “we found out he has a broken leg.”

In a report on health care for people with disabilities, the National Council on Disability stated that most medical schools do not include “disability competency” as a core curriculum requirement, and disability competency isn’t generally required in obtaining a medical or professional healthcare license.

The NCD report added that in a survey of Connecticut physicians, 91 percent said they had received no training in intellectual and developmental disabilities. The report also stated that health care providers frequently conduct examinations or diagnostic tests while disabled patients are seated in their wheelchairs, which can generate inaccurate test results or “conceal physical evidence required for appropriate diagnosis and treatment.”

Finally, the NCD study stated that:

For many people with disabilities, poor communication with providers and limited time for office visits reduces the quality of care they receive and may impede diagnosis of new health conditions and prolong or leave untreated chronic health problems. (my emphasis)

We are not saying any of the issues raised in these studies was necessarily a reason or cause of the former resident’s death in the Lowell General Hospital case.  But given that the DPH report doesn’t appear to address those issues in any way, we think that question remains unanswered.

In what we see as a win for the public’s right to know, the state’s Supervisor of Public Records has concluded that the Department of Public Health went too far in redacting virtually an entire report on an intellectually disabled man who died in February 2012 after he was reportedly sent home twice by Lowell General Hospital.

The September 21, 2015 decision by Public Records Supervisor Shawn Williams was issued in response to an appeal filed by COFAR after the DPH had sent us a report in May that was virtually unreadable because just about everything in it had been whited out.  Williams ordered DPH to provide us with “a new redacted copy” of the report within 10 days, along with a written explanation regarding any portion the Department still considers to be exempt from disclosure.

Last month, the Public Records Division reviewed an unredacted version of the report in camera to determine whether DPH was justified in the wholesale redactions based on a claim that the report contained medical information that might violate the deceased man’s privacy.

Williams stated in his Sept. 21 decision that “generally, medical information will always be of a sufficiently personal nature to warrant exemption” from the Public Records Law.  The decision also stated that even though the individual is deceased, “an individual’s privacy interest in medical information survives death.”

However, even given that exemption, Williams said DPH “provided no explanation as to why it could not redact portions (of the report) that specifically identify the individual to whom the medical information relates.”  DPH also redacted portions of the report “describing the actions of others who are not the person to whom the medical exemption would apply,” Williams stated.

Williams concluded that “…other than portions of the report that specifically identify a person, the Department (DPH) has failed to satisfy its burden under the law to merit nondisclosure of such significant portions of the narrative.”

The Public Records Supervisor’s decision pointed out that COFAR was willing to accept a redacted version of the report that did not reveal the individual’s name or medical information that might violate his privacy.  Williams also noted our complaint that it was impossible to tell from the redacted report whether DPH had examined the hospital’s policies for treating people with developmental disabilities, or whether the report contained any recommendations regarding hospital policies and procedures.

We have previously reported that the 51-year-old man had been having difficulty breathing and was sweating when he was taken to the hospital on both February 6 and 7 in 2012.  On both occasions, he was sent back by the hospital to the group home in which he was living with no significant treatment.  He died, apparently en route to the hospital, after staff in his group home called an ambulance for the third time on the afternoon of February 7.

The cause of death was listed on the death certificate on file in the City of Lowell as acute respiratory failure and aspiration pneumonia, which can indicate choking.  A death report form filed with the Disabled Persons Protection Commission stated that the man died after experiencing cardiac arrest.

The DPPC referred the case of the man’s death to the DPH, apparently because an allegation about improper care in the case involved the hospital and not the man’s group home, which is operated by the Department of Developmental Services. Williams’ ruling still seems to leave some room for DPH to redact anything that they contend could identify the deceased resident; but they will have to include more information in the report than they did in the document they previously provided to us.

Secretary of State Bill Galvin, whose office oversees the Public Records Division, has come in for criticism lately for his allegedly lackluster enforcement of the Public Records Law in Massachusetts.  But in this case at least, we have to commend Galvin and his staff for the work they’ve done.

The Department of Developmental Services is on the hook to create a national background check program that will cost the Department more than $500,000 in the current fiscal year alone and will involve background checks of tens of thousands of current and prospective staff, according to a document posted on the Department’s website.

Yet DDS has continued to balk at applying for up to $3 million in federal grant funds that could help the Department develop the much delayed program.  As a result, it appears DDS will have to continue to take money from departmental accounts that have been repeatedly shortchanged in terms of funding in recent years.

The online document states that DDS will be responsible for national background checks of more than 20,400 current human service corporate provider staff in the state, including some 6,500 staff working directly for the Department itself. The document appears to project that DDS will do national background checks on more than 10,600 new provider staff and 1,300 new DDS staff each year.

The document notes that in the current fiscal year, DDS will need a minimum of $510,000 to hire and train staff to be ready for the January 2016 implementation date for the first phase of the program, which involves undertaking background checks of new staff.

COFAR has been urging DDS for the past two years to apply for the federal grant funding, which has been available to states since 2010 under the Affordable Care Act or ObamaCare.  In August 2013, a DDS official replied in an email that the state had not applied for the funding because state legislation authorizing national background checks by DDS was not yet in place.  Once such legislation was enacted, the official wrote, “we will pursue the federal dollars.”

Even then, it wasn’t necessary to wait to apply for the funding, under the grant rules; but that long-awaited legislation was, in fact, signed into law by then Governor Patrick last August. Yet, on May 1 of this year, some nine months after the bill was signed, DDS was still considering whether to apply for the grant, according to a letter sent to us by the DDS general counsel.  As of May 27, the matter was still under consideration, according to a follow-up letter from a DDS assistant general counsel.

This is a year in which DDS Commissioner Elin Howe has said the Department has had to deal with “huge and difficult (budget) reductions.”  It would seem that the Department doesn’t have the luxury to spend months thinking about whether to accept federal assistance in paying for the development of a new, required program.

It’s not even a competitive grant, meaning it appears to be practically guaranteed money.  A total of 24 states and Puerto Rico have been awarded close to $57 million in this funding. Thus far, Massachusetts is among 26 states that still haven’t applied for the grants.

The state legislation signed in August authorizes DDS to conduct national criminal background checks of persons hired to work in an unsupervised capacity with individuals with developmental disabilities.  The law will ultimately require that both current and prospective caregivers in the DDS system submit their fingerprints to a federal database maintained by the FBI.  The law applies to DDS employees, employees of corporate service providers to the department, and caregivers over the age of 15 of persons living at home.

Up to now, persons hired to care for clients in the DDS system have had to submit only to an in-state criminal background or CORI check, which identifies only criminal arrests and convictions in Massachusetts.  CORI checks do not identify any convictions a job applicant might have from another state.

The new national background check requirements will not fully take effect until January 2019 for current employees, and until January 2016 for new employees.  As we have noted a number of times, neither the Legislature nor the administration of then Governor Deval Patrick appeared to place a priority on getting the new program up and running quickly.

That lack of urgency appears to be further reflected in the continued failure by the Baker administration to apply for the available grant funds for the program.  As noted, the program will not be a small undertaking.

In response to an information request we submitted in early March, the DDS general counsel stated in early May that the Department was in the process of “developing, designing, and preparing the various systems” needed to implement the new program.  Departmental staff were meeting weekly “to plan for the procurement and design of information systems needed to receive and securely store confidential national background information..”

DDS is also planning to establish a unit within the Department of specialists to review both state and federal information in order to determine, apparently on a case-by-case basis, whether each applicant or existing employee is suitable for employment.  DDS is currently drafting regulations to govern these processes.

Thus far, no additional funding has been allocated to DDS to implement the program.  The 510,000 needed for the current year in implementation money has to come from somewhere.  Why not take help when it’s offered?

An investigative report by the Department of Public Health appears to have concluded that Lowell General Hospital was not at fault in the case of a developmentally disabled man who died after having been turned away twice by the hospital in 2012 without any significant treatment.

I’m using the word “appears” to describe the report’s finding because virtually all of the text was redacted in the version of the document provided to us last week by the DPH.  Even the date of the report could not be determined from the document.  We are asking the state Public Records Division to order the DPH to produce a more comprehensible version of the report.

As I previously reported, the 51-year-old man, whose name is being withheld, died in February 2012 after having been taken twice in two days to the Lowell hospital and sent away each time.

The man had been having difficulty breathing and was sweating profusely when he was taken to the hospital on both February 6 and 7.  On the morning of February 7, he was sent back by the hospital to the group home in which he was living with a prescription.  He died, apparently en route to the hospital, after staff in his group home called an ambulance for the third time on the afternoon of February 7.

The cause of death was listed on the death certificate on file in the City of Lowell as acute respiratory failure and aspiration pneumonia, which can indicate choking.  A death report form filed with the Disabled Persons Protection Commission stated that the man died after experiencing cardiac arrest.

The DPPC referred the case of the man’s death to the DPH, apparently because an allegation about improper care in the case involved the hospital and not the man’s group home, which is operated by the Department of Developmental Services.

It seems surprising that state investigators would find no problems with the policies or procedures of a hospital that apparently failed to provide any significant treatment to someone who subsequently died due either to choking or a heart attack.  Common sense would imply that something went wrong somewhere in the hospital’s procedures between the time the man first arrived at the hospital exhibiting signs of physical distress and his death the next day.  But if the state did find something wrong, it’s not evident in the version of the report we received.

In February of this year, we requested a copy of the DPH’s report on the case, but the Department denied our request, citing the deceased man’s privacy rights.  We appealed to the Public Records Division, which last month upheld our appeal, ordering the DPH to produce the report or explain why it was exempt from the Public Records Law.

As we have previously noted here, our interest lies in whether the DPH examined the adequacy of Lowell General Hospital’s policies and procedures for treating persons with developmental disabilities.  This case suggests to us that there may have been inadequate training of hospital health care personnel in the treatment of developmentally disabled persons.  The lack of such training has become an issue of concern to advocates for the disabled and to many policymakers.

Given the narrow scope of our interest, we indicated prior to the Public Records Supervisor’s ruling that we were open to accepting a redacted version of the DPH report that did not reveal the man’s name or medical information about him that might violate his privacy.  We said, however, that we would not accept a report that was redacted to such an extent that we were unable to substantively discern either its findings or the support for its findings.

Unfortunately, that is the case with the document we have received from the DPH.  The redactions in this report appear to go far beyond what might be construed to be medical files or information. It is impossible to tell from the document whether the Department investigated the hospital’s policies or procedures for treating individuals with developmental disabilities or whether the DPH examined the training of staff in that regard. It is also impossible to tell whether the report contained any recommendations regarding hospital policies and procedures.

(Again, feel free to review the DPH report yourself at this link.)

The only statements in the DPH report that were not redacted and that appear to be relevant to the investigation of the case are four apparent findings in what is labeled the synopsis on the first page.  But even those findings have been at least partially whited out so that they cannot be fully understood.  Those apparent findings are that:

1. There was an allegation that hospital emergency staff were “ill-equipped” to deal with something.  We don’t know what that something was because the language is redacted.  We assume it was the treatment of the developmentally disabled man.  However, due to the redaction, it was impossible to determine that with any certainty.

2. Based on a review of medical records and interviews with staff, “the allegation was determined not to be valid,” the report stated. There is no text in the document providing any support or reasoning for the finding.  The finding indicated that in addition to medical records, three other things were reviewed as well, but the list of those three things was redacted.

3. Based on a review of something else that was similarly redacted, “appropriate care was rendered.”  Again, no further support or information was given for this finding.

4. The hospital’s discharge plans “were appropriate and communicated to”…redacted.

That is the extent of the readable text in the report that appears to be relevant to the investigation.  The full report is apparently more than five pages long.  However, after a heading labeled “Survey findings” on page 2, the report is entirely blank with the exception of one partial sentence on page 5 that states: “Review of the Medical Screening Examination dated 2/7/12 indicated”…  The sentence breaks off at that point and there is nothing further in the document. February 7, 2012 was the date of the disabled man’s death.

In his April 29, 2015 order to the DPH to turn over the report to us, Public Records Supervisor Shawn Williams wrote that the Public Records Law strongly favors disclosure by creating a presumption that all governmental records are public records.  In addition, Williams’ order noted that it is the burden of the department that possesses the requested records to demonstrate the application of an exemption in order to withhold any of those documents.

In our view, the DPH has failed to comply with the letter or spirit of the Public Records Law, and has not met its burden of demonstrating that the wholesale redactions of the report were either necessary or complied with the requirements of the records law exemption.

We sent a letter last week to Williams and to another attorney in the Division who handled our case to let them know of the nature of the document the DPH produced.  We’re confident Williams will agree with us that the DPH needs to do better that what they have done in providing the requested report.