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Archive for May, 2018

State Public Records supervisor reverses self, upholds secrecy of DPPC reports

May 23, 2018 2 comments

In a reversal of her earlier decision, the state’s Public Records Supervisor has issued a final determination that the state Disabled Persons Protection Commission can keep investigative reports about the abuse or neglect of any “identified individual” secret.

We were surprised and disappointed by the final decision by Public Records Supervisor Rebecca Murray, which was issued on April 20. It may become nearly impossible for the public to learn the outcomes of many, if not most, investigations of abuse and neglect of developmentally disabled persons as a result.

On May 16, Murray declined my request that she reconsider and restore her original March 22 order to the DPPC. That original determination had appeared to recognize at least some DPPC reports as public records.

In her final decision on April 20, Murray focused on one exemption to the Public Records Law [known as “Exemption (a)”], which appears to us to give blanket authority for the enactment of statutes and regulations that can potentially exempt all records of particular state agencies from disclosure.

Murray’s interpretation of Exemption (a), in our view, could establish a precedent under which blanket secrecy laws and regulations could be enacted on behalf of agencies throughout the state government. That would be the case even though the Public Records Law supposedly establishes a presumption that all governmental records are public and that exceptions to that rule must be considered on a case-by-case basis.

Murray’s two contradictory decisions stem from an appeal I filed in February based on my request to the DPPC for investigative records regarding the death of Karen McGowen, a client of the Department of Developmental Services.  Ms. McGowen was killed in an apparent accident last November. She reportedly fell from a wheelchair lift while getting out of a van at her DDS-funded day program in Pittsfield.

The DPPC, which is charged with investigating or supervising investigations of abuse and neglect of disabled adults under the age of 60, confirmed it was investigating Karen McGowen’s death.

DPPC HQ

DPPC headquarters in Braintree (Google Maps image)

On February 13, the DPPC denied my request for the records in the case, stating that the investigation was incomplete. But in denying the records, the DPPC’s assistant general counsel stated that even when the investigation was completed, any records the Commission had on the case would be exempt from public disclosure and that I would need permission from Ms. McGowen’s legal representative to obtain them.

The problem, as I stated, is that even if we were able to find Ms McGowen’s legal guardian, that individual, if he or she exists, would have to agree to authorize the release of the records in the case to us. That effectively nullifies these as public records.

In denying the records, the DPPC cited Exemption (a) as well as other exemptions to the Public Records Law, arguing that because I had sought records “regarding an identified individual and (because) redaction of personal data would be insufficient to protect existing privacy interests, … the responsive materials in their entirety cannot be disclosed.”

In her prior decision on March 22, Murray had determined that none of the exemptions cited by the DPPC applied in the case because the DPPC had provided no specifics to explain why it would not be possible to protect the various parties’ privacy interests through the redaction of names and other identifying material.

Murray had gone on to state that the DPPC “bears the burden to prove with specificity any exemption (to the Public Records Law) that applies.”

However, in her April 20 decision, Murray no longer noted the DPPC’s lack of specificity. She concluded, in  discussing Exemption (a), that the DPPC’s enabling statutes and regulations:

 …provide that the records of the Commission are not public records … Additionally, the regulations provide that the Executive Director, General Counsel and/or designee has the discretion to determine if records subject to disclosure should not be disclosed due to the specific nature of the request (my emphasis).

It seems to us that to the extent that Exemption (a) — or at least Murray’s interpretation of it — permits the enactment of statutes and regulations that classify all records of an agency as non-public, Exemption (a) creates a major loophole that circumvents the intent of the Public Records Law.

The absurd logic underlying the privacy argument in this case is that the supposed violation of Karen McGowen’s privacy in releasing the documents is somehow worse than revealing the actions that caused her death.

In this case, in fact, the “identified individual,” Karen McGowen, is deceased. Murray herself stated in a 2017 determination that privacy interests, other than in medical information, are “extinguished at death.” We are not seeking medical information in this case.

Moreover, we have to wonder why Murray didn’t seek to review the materials we are requesting to determine whether redactions to protect privacy interests would be possible.

As I stated before,  it’s disappointing that to the extent the DPPC does get involved in crucial investigations of abuse and neglect in the state’s human services system, it has taken the position that the products of its work must be kept secret.

Despite what the DPPC apparently thinks, the public has a strong interest in knowing the outcomes of the Commission’s investigations. If the Commission finds, for instance, that the wheelchair lift that Ms. McGowen used was defective, it would be important that the public know this.

If the DPPC finds that the staff of a particular facility failed to provide proper care to an individual because they lacked proper training, the public should know that too. As things currently stand, these are the types of things the public may never find out.

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DDS appears to look the other way as provider illegally bans guardian from daughter’s group home

May 14, 2018 21 comments

Despite a broadly worded state regulation that gives residents of state-funded facilities the right to be visited, a human services provider agency is upholding a directive barring a guardian of a developmentally disabled woman from entering her group home.

Yet, the Department of Developmental Services does not appear to be pushing the provider to rescind its months-long ban.  Instead, the Department appears to have decided to ignore the fact that the ban exists.

The August directive from the provider, Toward Independent Living and Learning, Inc. (TILL), stated in writing that the guardian, Susan Fernstrom, “will not go into the residence” even to bring food or other items to her daughter, Holly. “Anything you need to deliver to the residence must be given to the staff or the manager and they will see that it is properly put away,” the directive stated.

In their most recent exchange about the situation, Susan emailed Jennifer Killeen, DDS area director, on May 4, stating that the ban was restricting her ability to serve as Holly’s guardian. In an email in response to Susan on May 8, however, Killeen did not address that concern or mention the ban.

Instead, Killeen’s email described the TILL directive as simply “calling for coordination and notice of any visits to the home…” As such, Killeen said, the directive was “reasonable and compliant with DDS regulations concerning visitation.” This was exactly the same language used by DDS Regional Director Kelly Lawless in an email to Susan in April regarding the TILL directive.

Killeen had also advised Susan in an email on May 2 to establish “regular discussions with TILL and the DDS Service Coordinator about your concerns.”  But when Susan raised the issue of the ban in a phone call with Dafna Krouk-Gordon, TILL’s president, two days later, she said Krouk-Gordon flatly refused to rescind the ban.

It is abundantly clear that the TILL directive goes further than calling for coordination and notice of visits. It bans Susan outright from entering the home.

We have previously noted that we have heard of no evidence that Susan ever acted in a disruptive way either inside the home or in any other location. It appears that the only reason for TILL’s prohibition against her from entering the home and for a subsequent notice of eviction of Holly is that Susan pointed out deficiencies in the staff’s compliance with Holly’s medically necessary dietary restrictions and with conditions in the residence on a number of occasions.

DDS regulations, which give DDS clients the right to receive visitors, specifically state that family members and guardians shall be permitted private visits “to the maximum extent possible.”

The regulations add that clients and their family members and guardians must be allowed to meet “under circumstances that are conducive to friendships and relationships,” and that the location must be suitable “to confer on a confidential basis.”

Enforcement of the ban raises further questions

Enforcement of the ban on entering the home appears to be up to the discretion of the staff and to Krouk-Gordon. Susan said she was allowed three visits in Holly’s room in April, two of which were used to help Holly pack for an upcoming trip and to try on clothes.

Susan noted that not only was she not allowed in the kitchen in the three instances in which she was admitted to the house since August, she wasn’t even allowed in the living room with Holly. Her visits were confined to Holly’s bedroom. She said she has not been allowed for nearly a year into the basement where Holly keeps seasonal clothes and personal items.

In most instances since last August, Susan has been made to wait outside the house for Holly, even in the dead of winter. She said she has even been made to stand outside the house while signing paperwork involving Holly’s care.

As we have reported, in addition to having an intellectual disability, Holly has a serious genetic metabolic condition called galactosemia, which requires a diet free of galactose, a form of sugar found in milk and cheese. That diet must be strictly adhered to in order to avoid complications including brain and kidney damage. Holly must also eat multiple servings of vegetables because she does not metabolize all the nutrients in her food.

Susan has in the past raised concerns that the group home staff was not following her instructions either in buying food for Holly or preparing and serving it to her. Her complaints appear to have led directly to the issuance of the directive banning her from the residence.

Susan said that in the phone call she had with Krouk-Gordon on May 4, Krouk-Gordon declined to discuss Susan’s concerns about Holly’s diet or other issues involving care and conditions in the group home.

Because Susan has only been provided sporadic access to the house since last August, she has been unable since then to determine what Holly is being fed. That has impeded her ability to function effectively as Holly’s guardian and to assure her health and wellbeing.

Krouk-Gordon has not returned phone calls or emails from COFAR for comment on the case.

Susan said said Holly’s dietician at Children’s Hospital had come to the house when Holly moved in, in June 2015, to help management and staff and to also explain why Holly’s diet was so important.

“During Fran’s (the dietician’s) presentation, she stressed to management and staff they should defer to me on Holly’s diet because I knew as much as she did about a galactose-free diet,” Susan wrote to us in an email. She added that she was involved in helping recruit subjects for a first-ever study on adults with galactosemia.

Susan said that to the extent the TILL directive has specified coordination of communication with TILL, the agency hasn’t followed the directive. For instance, Susan said she has not been able to get in contact with the group home’s current nutritionist.

“I’m very worried about what’s going in that house with her food,” Susan said. She said that while Holly is supposed to eat a lot of vegetables, she is concerned, based on Holly’s own reports to her, that she is not getting the food she needs.

During her May 4 phone call with Krouk-Gordon, Susan said Krouk-Gordon also wouldn’t say whether she would rescind the eviction notice for Holly, which she had also issued in apparent violation of DDS regulations. After only a short discussion, Susan said, Krouk-Gordon ended the phone conversation, saying, “‘Your time is up.'”

On April 24, DDS Commissioner Jane Ryder responded to an April 17 email I sent her regarding the TILL ban on entering the residence and a number of Susan’s other concerns. Ryder stated that DDS cannot comment on the specific matters I raised because that would violate client confidentiality. Ryder stated only that, “DDS has been working with the provider and families involved to address any issues and will continue to do so.”

On May 7, I emailed Ryder back, asking whether she could comment generally as to whether providers are permitted to ban guardians from access to residential facilities when there has been no demonstrated disruption of the facilities by those guardians. To date, Ryder has not responded to my query.

Tens of millions of dollars in government funding

As a recipient of state funding, TILL is obligated to comply with state law and DDS regulations.

TILL received $38.6 million in “government grants (contributions)” in Fiscal Year 2017, according to the organization’s IRS 990 form, although the form doesn’t specify which agency or agencies the funding came from. We are assuming the funding is primarily from DDS.

According to the IRS form, Krouk-Gordon received $321,772 in compensation as president of TILL in Fiscal 2017.  Kevin Stock, TILL vice president, received $229,988 in total compensation.

I’ve checked back to Fiscal 2015 so far, and TILL does not appear to have filed the standard online Uniform Financial Report with the state that contractors are supposed to file. That report is supposed to show how much the agencies get in state funding from identified agencies.

I called the state Operational Services Division earlier this month to ask why TILL’s UFR reports don’t appear to contain required information. I haven’t received a call back.

TILL’s financial and business practices have in the past been the subject of controversy.  A January 2002 report by the state auditor stated that TILL, under Krouk-Gordon’s management, had spent more than $4 million in state funds in “unallowable, undocumented, and questionable business activities.” We reported on this in The COFAR Voice in 2005.

In an email to Jennifer Killeen on May 9, which was copied to Commissioner Ryder, I urged DDS “to fully acknowledge the facts and the truth” about TILL’s treatment of Susan and Holly. In particular, I urged DDS to acknowledge the existence of the ban on Susan from entering the group home.

This is an important test for DDS, in our view. If the agency isn’t even willing to acknowledge the clear facts of the cases before it, it cannot effectively carry out its mission of supervising the care of the most vulnerable among us.

Channel 5 uncovers tip of the DDS system iceberg

May 4, 2018 2 comments

A Channel 5 investigative report earlier this week disclosed that group homes and other providers of services to the developmentally disabled are often not informed about substantiated abuse allegations against individuals they hire as caregivers.

The TV news report also made the important point that abusers of disabled persons in Massachusetts are rarely prosecuted for those crimes.

In no way are we criticizing Channel 5 in saying they have uncovered the tip of an iceberg with their findings. Their report revealed more to the public about the Department of Developmental Services system than the rest of the media in the state and most state and legislative investigative authorities have revealed in recent years.

At the same time, it is important to keep in mind that abuse and neglect are only the most outward and visible signs of an overall breakdown in DDS’s largely privatized system.

It is a system that is not adequately monitored by DDS, that underpays and provides inadequate training to direct-care staff, and that overpays a padded layer of corporate provider executives. Moreover, when family members and guardians attempt to question the care and conditions in the system, they are ignored, or worse, intimidated and subjected to retaliation by both the providers and DDS.

One of those family members who has suffered apparent retaliation is Susan Fernstrom, who we just wrote about last week. Susan was banned by her daughter’s provider agency from entering her daughter’s group home after she raised concerns about poor care and conditions in the residence. The provider then sought to evict Susan’s daughter from the home.

In cases in which family members do not have guardianship rights, those persons can find themselves restricted from all contact with their loved ones, apparently indefinitely.

In the past several months, we have tried to make the Legislature’s Children, Families, and Person’s with Disabilities Committee aware of these interrelated issues. In January, the Committee did hold a brief hearing on DDS; but, as we have noted, family members and other members of the public were not allowed to speak before the panel.

We continue to hope that the Children and Families Committee will show that it is taking this situation seriously.  If the Committee were serious, it would get behind legislative reforms.

One of the first pieces of legislation that we think needs to be enacted is the guardian rights bill (H. 887), which has been stuck in the Judiciary Committee, effectively since 1999. The bill would require that probate judges presume that parents of developmentally disabled individuals are the proper guardians for them. That bill, if it ever passed, would give basic rights to family members that are not currently extended to them.

We think that proposed legislation to impose fines on providers that provide substandard care or that otherwise fail to adequately respond to instances of abuse could follow from that.

The Channel 5 report discussed the need for an additional piece of legislation (S. 2213), which would establish a registry containing the names of individuals who have had abuse or neglect allegations substantiated against them by the Disabled Persons Protection Commission or other agencies that investigate those issues.

As Channel 5 noted, persons applying for caregiver positions in the DDS system currently must undergo criminal background checks, which disclose previous convictions for abuse and other crimes in Massachusetts and other states.

However, even when abuse against persons with developmental disabilities is substantiated by agencies such as the DPPC, it does not usually result in criminal charges. As a result, those findings of substantiated abuse are not made known to providers or other agencies seeking to hire caregivers. That’s why an abuse registry is needed in Massachusetts.

We would note that such a registry needs to be designed to take into account the larger issue of the dysfunctionality of the system. Most if not all abuse occurs because upper management in both provider agencies and DDS itself doesn’t care enough about the problem to ensure that staff are properly trained and supervised.

Until executives within provider agencies are held accountable for the abuse that occurs by low-level agency employees, those low-level employees will simply continue to be replaced by other equally bad personnel.

One other thing to keep in mind is that even though the DPPC does have a backlog of abuse investigations, as the Channel 5 report pointed out, the Commission refers the vast majority of its complaints to DDS for investigation. This creates a conflict of interest for DDS, which is also supposed to be overseeing the same providers that it is now investigating.

We think the DPPC needs to be given the resources necessary to allow it to serve as a truly comprehensive and independent investigatory agency.  The DPPC also needs to make its investigative process more transparent and, in that vein, make its reports available to the public.

The Channel 5 report this week demonstrates that at least one media outlet in the state recognizes that there is a serious problem with the oversight of care for a large segment of the disabled population in Massachusetts. We hope the report serves to wake up the rest of the media, the Legislature, and the Baker administration to this problem.