If you haven’t read The Hartford Courant’s series this week on abuse and neglect of people with developmental disabilities in Connecticut, we urge you to do so.
It is eye-opening in its detailed depictions of the lack of training and supervision that led to 76 deaths over a seven-year period between 2004 and 2010.
One of the conclusions we hope people will eventually draw from this series is that it makes a strong case — although perhaps not intentionally– for opening the Southbury Training School to new admissions. We are trying to take this opportunity to let state and federal lawmakers and policymakers know why.
The Courant’s series primarily focused on deaths and other results of abuse and neglect in privately operated group homes and nursing homes around the state. The paper noted that this community-based system is facing budgetary pressures that have brought it to what the paper describes as a “breaking point.”
We think STS can play an important role in helping to fix this problem. It will, however, require a reversal of the state’s current policy of preventing new admissions at STS and persuading guardians there to move the current residents out of the facility.
STS is a critically important state asset. On its campus are group-home-style residences as well as medical and dental facilities that serve both its own residential population and many people in the community. Those facilities are staffed by on-site doctors and nurses and by specialists who regularly visit the residents, most of whom have severe and profound levels of intellectual disability and complex medical conditions.
While abuse and neglect can and does occur in all settings of care, the care at STS is provided by well-trained and experienced staff, and complies with high federal standards. Those factors have long provided peace of mind to the families and guardians of the residents.
Yet because STS has been closed to new admissions for decades, the declining residential population through attrition is pushing the cost per resident there ever upward to a point at which the facility will no longer be financially or politically viable to maintain. As of February, some 370 residents remained at STS, down from more than 450 in 2011.
In response to a court settlement in 2010, the state has stepped up its efforts to encourage guardians to move residents out of STS and into the community-based group-home system. However, there is currently a waiting list for residential placements in that system that is conservatively estimated at more than 1,000. There are not enough group homes for people who need them.
Anyone who agrees to leave STS will be moved quickly to any open or newly built community-based residence. But that means that they are moved ahead of many other people developmental disabilities, who may have been waiting for years for a residential placement.
The result is that ever larger numbers of people are being kept at home with inadequate care or are being placed in nursing homes, which state officials acknowledge do not have the staffing expertise to care for them.
The only solution to the problems outlined by The Courant that appears to be put forth by state officials is to care for even more people at home rather than in facilities such as STS or in group homes or nursing homes. But that is not a solution for everyone, particularly those who have severe and profound levels of developmental disabilities.
This is why we think STS needs to be opened to new admissions. Not only would that ensure that a setting with a record of highly supervised care will remain available to its own residents, but it will help solve the waiting list crisis for people throughout the state.
One of the people we have contacted to make our case lately has been U.S. Senator Chris Murphy, who has called for a national investigation of care of the developmentally disabled in group homes and nursing homes. Senator Murphy has long voiced the concern that privatizing state services is not a panacea and that it can cause standards of care to slip.
While he was a state senator, Murphy brought about a moratorium on the privatization of group homes in Connecticut. That moratorium expired in 2009. We’re not advocating that the moratorium be re-imposed.
What we are suggesting is that we view STS as part of the solution as we plan for how we will care for some of our most vulnerable residents in coming decades.
By David Kassel
We are concerned that a report on deinstitutionalization issued last month by the National Council on Disability (NCD) could put pressure on lawmakers and state officials to close vital facilities for people with developmental disabilities, ranging from group homes to the Southbury Training School.
The report and “Toolkit” (an online how-to manual), titled “Deinstitutionalization: Unfinished Business,” takes a radical anti-institutional position that facilities with more than three people living in them should be closed. In essence, the NCD is calling for shutting down not only facilities the size of STS, but most of the group homes into which STS residents are currently being transferred.
Here’s the first sentence of the NCD report, which lays out the scope of the agency’s position:
The unfinished business of closing state-run institutions and other public and private institutional settings that have traditionally served people with intellectual disabilities and developmental disabilities is an important first step and should be a top public policy priority in every state where such institutions exist. (my emphasis)
In the report, the NCD defines an “institution” as ”a facility of four or more people who did not choose to live together.”
The NCD is an independent federal agency that advises the president and Congress on issues concerning the disabled, and, as such, has a potentially powerful influence on federal and state policymaking.
The broad scope of the NCD’s anti-institutional agenda is surprising because private providers of group homes have been among the most vocal advocates of closing large state-run facilities. Now, it appears, the NCD is lumping most of the facilities operated by those providers in with the larger state-run facilities, and contending they must all be closed.
Equally concerning is that the NCD seems to be focusing most of its anti-institutional criticism on Intermediate Care Facilities (ICFs) for the developmentally disabled. ICFs tend to serve the most profoundly disabled people and must meet more stringent federal standards for care and treatment than do most group homes. STS is an ICF, and there are also approximately 70 small, privately operated ICFs operating in Connecticut.
The NCD report characterizes ICFs — even the small ones — as providing “a regulated program of services in a formally certified setting.” This means, according to the report, that residents in those facilities are “still living an institutional life.”
In other words, the NCD appears to oppose formal certifications or standards specified in federal regulations for staffing, treatment and other aspects of care in ICFs. Those standards make those facilities too institutional, according to the NCD. That raises the question whether the NCD is proposing an unregulated system of care for people with developmental disabilities.
In calling for the closure of all of these residential centers of care, the NCD does not appear to suggest what would replace them. In Connecticut, for instance, there were more than 1,000 people with intellectual disabilities who were waiting for residential placements as of September, including 57 who were deemed emergency cases, according to a DDS online report. Many of these people have been waiting for these placements for years.
We have long contended that the administration’s current policy of moving STS residents into community-based group homes is only making the waiting list longer for others who are seeking residential care. Yet, the NCD is now contending that most of the existing community-based residential infrastructure should be dismantled.
[The] NCD calls for the closure of facility-based homes of four or more people when families and legal guardians are nearly universally opposed to such closure. This is irresponsible given the widespread, well-documented tragedies associated with under-funded and ill-prepared ‘community’ programs for individuals with profound needs. NCD has put its most fragile constituency at great risk of harm.
Among the institutional closure strategies listed by the NCD is something that was done at STS many years ago: “close the front door.” The NCD Toolkit states that a strategy of blocking new admissions tends to reduce opposition among families when the decision is made to close facilities.
- “Define the choice (over closure) as not ‘if,’ but ‘when’ and ‘how,’”
- “Be clear that living in the community is a civil right,” and
- “Build your case with faces, not facts.”
In our view, these strategies demonstrate a lack of interest in thoughtful debate or discussion over how to provide the best possible care for people with developmental disabilities. For example, the Toolkit’s elaboration on the third bulleted strategy above states: “‘Faces not facts’ are important drivers of the discussion and the community’s support….”
It’s unfortunate that the NCD believes it needs to downplay facts and appeal to emotion in order to carry out its agenda. And the strategy of portraying community-based care as a civil right appears to ignore the rights of those who will lose their longtime homes as those facilities are closed against their wishes.
The family members and guardians of the residents at STS are in the best position to determine the type of care that is in their loved ones’ best interest. The federal Developmental Disabilities Assistance and Bill of Rights Act recognizes that fact in stating that guardians and family members should be considered the “primary decision-makers” regarding the services and supports such individuals and their families receive, including where the individuals live. Moreover, federal Medicaid Act and regulations state that all persons eligible for care under the Act must be given “the choice of either institutional or home and community based services.”
We hope people will contact their elected representatives at the state and federal levels to let them know that the NCD’s deinstitutionalization agenda will take us in the wrong direction and subject people with developmental disabilities, as the VOR says, to great risk of harm.
A list of our current Federal Elected Officials (Senators and Representatives) is available at www.usa.gov/Contact/Elected.shtml. The list Connecticut State Senators and Representatives is also available at www.cga.ct.gov/
The NCD as well can be contacted by phone at at 202-272-2004 (Voice), 202-272-2074 (TTY), and 202-272-2022 (Fax), or by email at firstname.lastname@example.org. You can also write to Aaron Bishop, executive director of the NCD, at 1331 F Street, NW, Suite 850, Washington, DC 20004.
By David Kassel
More than 41 percent of the complaints lodged over the past decade of abuse and neglect of intellectually disabled people in Connecticut were investigated by state-funded, nonprofit provider organizations and not by state agencies, according to data provided by the Department of Developmental Services.
The data, provided under a Freedom of Information Act request, show that nonprofit providers, which primarily operate community-based group homes, were the sole investigative agencies in 2,750 out of a total of 6,654 abuse and neglect cases in the state between 2002 and 2012.
As the table below shows, provider agencies were involved in a total of 4,677 investigations between 2002 and 2012, or 70.3 of the total investigations conducted. In contrast, DDS was involved in just 24.9 percent of the total investigations, and the independent state Office of Protection and Advocacy for Persons with Disabilities (OPA) was involved in directly investigating only 7.7 percent of those investigations.
The OPA appears to primarily monitor investigations by other agencies. According to the DDS data, OPA monitored a total of 2,048 investigations, or 30.8 percent of the total number.
The situation is of concern to guardians of residents at the Southbury Training School (STS), who are under increasing pressure from DDS to move their family members into community-based group homes.
If a case of abuse or neglect occurs at STS or in other state-run DDS facilities, it is investigated by either DDS or the OPA. However, an online DDS policies and procedures manual states that investigations of complaints involving providers and their staffs are “usually” conducted by those same providers. This, in our view, is a fox-guarding-the-henhouse approach to oversight of oversight of abuse and neglect in the DDS system.
A 2008 interagency agreement between DDS and OPA states that DDS must establish “minimum standards” to ensure that providers have staff that are qualified to carry out abuse and neglect investigations, and that both DDS and OPA will conduct independent reviews of investigative reports done by the providers. We would question, however, just how thorough such reviews tend to be.
The DDS manual states that a provider investigator must not be a supervisor in a program that he or she is investigating and cannot have a personal relationship with employees in that program. But while these restrictions indicate that DDS recognizes the potential for conflicts of interest in these situations, they don’t eliminate the basic conflict in allowing a provider to investigate itself.
The DDS records show that several public agencies are authorized to investigate allegations of abuse and neglect of intellectually disabled persons, including DDS, OPA, the Department of Social Services (DSS), the Department of Public Heath (DPH), the Department of Children and Families (DCF), and state and local police departments.
In many cases, more than one of these agencies were involved in investigating individual allegations over the past 11 years, often in addition to the private provider agencies. However, as the table below shows, the providers may have played the most prominent role in the investigations, having investigated almost as many allegations during the period as all the public agencies combined.
DDS Data on Abuse and Neglect Cases in Connecticut Investigated Between 2002 and 2012
|No. of Cases Investigated*||Percentage of Total Cases Investigated|
|Dept. of Developmental Services (DDS)||
|DDS Case Monitoring||
|Office of Protection & Advocacy (OPA)||
|OPA Case Monitoring||
|Dept. of Social Services||
|Dept. of Public Health||
|Dept. of Children and Families||
|Local Police Force||
|State Police Force||
|Local Education Agency||
*More than one agency often investigated individual complaints, so the total number of cases listed in this column exceeds the total number of cases investigated.
I checked with Emil DeRiggi, deputy executive director of the Massachusetts Disabled Persons Protection Commission (DPPC), to see how that neighboring state handles abuse and neglect investigations, and whether providers in Massachusetts are allowed to investigate these cases. The DPPC is an independent state agency that is charged with investigating abuse and neglect of the disabled, and is the Massachusetts counterpart to the OPA in Connecticut.
In an email, DeRiggi had this to say:
When an allegation involving an alleged victim with an intellectual disability meets the jurisdictional criteria to be investigated under DPPC’s authority, only DPPC or DDS (the Massachusetts Department of Developmental Services) will investigate. DPPC never accepts an evaluation/investigation conducted by a provider agency/vendor as a substitute.
The potential for abuse and neglect of an intellectually disabled person while in the care of any state-funded facility is a matter of serious concern to any guardian or family member of that person. A high likelihood that these cases will be investigated as thoroughly and impartially as possible is the best deterrent to would-be abusers.
There are many troubling aspects to the statistics on abuse and neglect investigations that have been provided by the Connecticut DDS. It is troubling, for instance, that DDS itself directly conducted more investigations (1,655) than did the OPA, which is an independent agency and should therefore be conducting most, if not all, of these investigations, in our view.
In Massachusetts as well, the DPPC refers most of the complaints it receives of abuse and neglect to that state’s DDS to investigate. The departments of Developmental Services in both states directly manage or contract for care of the intellectually disabled, and therefore face a conflict whenever they investigate abuse and neglect complaints in their own facilities. But, in our view, Connecticut’s practice of designating providers as the sole investigators of 41 percent of the state’s total complaints presents an even bigger conflict.
Provider agencies tend to be small and to rely heavily, if not entirely, on DDS funding for their survival. We question their incentive to let DDS know about the most serious problems of abuse or neglect in their operations that could potentially jeopardize that funding.
Tamie Hopp of the national VOR, which advocates for adequate care around the country for the intellectually disabled, maintains that states generally lack the resources needed to adequately monitor community-based group homes in order to prevent and investigate abuse and neglect. This lack of resources is the reason there have been so many examples in recent years of abuse and neglect and inadequate care in these facilities. It also appears to be the reason Connecticut has chosen to allow the providers to monitor themselves.
It is yet another reason most STS guardians and family members want their loved ones to stay where they are.
By David Kassel
Opponents of the Southbury Training School contend it is too expensive to continue to operate, but the amount of any financial waste and fraud that exists at STS may well be much lower on a per-client basis than in the privately operated group home system in Connecticut.
Department of Developmental Services records indicate that the financial management system at STS and in other state-run facilities for persons with intellectual disabilities is tighter and better overseen than in the privately operated group-home system. This appears to be largely due to the fact that detailed policies and procedures are in place for the management of residents’ funds, in particular, in state-run DDS facilities.
In contrast, the state-funded, nonprofit providers who run group homes in Connecticut are given the discretion to develop their own policies and procedures for managing client funds. DDS provides guidelines for the providers, but there is no force of law behind those guidelines, which are not even official policies or procedures of the department.
There are some 730 group homes and apartments in the state for persons with intellectual disabilities that are run by state-funded, nonprofit providers. I’ll refer to these as privately operated group homes to distinguish them from the 70 state-operated group homes in Connecticut.
The state-operated facilities that are subject to detailed state requirements for managing residents’ funds include the state-operated group homes, STS, and five state-run regional centers. Both STS and the regional centers are classed as Intermediate Care Facilities for persons with developmental disabilities (ICFs/DD), which must also meet federal requirements for managing client funds.
One other relatively small class of residential facility in Connecticut consists of privately operated ICFs/DD. Unlike the privately operated group homes, the roughly 70 privately run ICFs/DD in Connecticut are subject to the same federal requirements for managing client funds as are STS and the regional centers.
In at least one recent case, a discretionary financial management system for privately run group homes has blown up into a scandal for DDS. The Hartford Courant reported on September 11 that an audit of group homes operated in the Hartford area by Humanidad, Inc. found numerous financial problems and irregularities, including payments to staff from client funds for meals and transportation — items for which the provider is already paid in state funds.
The audit also found that Humanidad was comingling some client and staff funds. And there were nearly $7,000 in withdrawals from client accounts with no supporting documentation. The Courant also reported that separate DDS investigations in 2009 and 2011 confirmed the theft by Humanidad staff members of over $14,000 in client funds. In some cases, staff members were listed as beneficiaries on client bank accounts.
The Courant previously reported a number of other problems at Humanidad homes, including staffing shortages, a lack of resources such as groceries and activities programs, and that clients in general were receiving subpar treatment.
It is unclear what policies and procedures were or are in place at Humanidad for managing client funds in its residences. A DDS spokeswoman is quoted in the Courant article as saying that DDS would work with Humanidad to revise their procedures to “ensure compliance with DDS requirements.”
The problem is that the only requirements concerning the management of client funds in privately operated group homes appear to exist in DDS regulations, which state that providers such as Humanidad must develop their own policies and procedures that:
(1) provide for the safekeeping, availability and the accountability of the individual’s financial interests;
(2) ensure that individual finances shall be separate from the licensee’s financial records;
(3) ensure maintenance of receipts of monies disbursed or received for items in excess of $20.00; and
(4) address the licensee’s responsibility for individuals who are independent in managing their finances.
The only aspects of these regulations that are specific in nature are the requirements for separating the individual’s and provider’s financial records and for maintaining receipts for expenditures or income greater than $20.
The far more detailed and specific requirements regarding client funds that apply to state-operated facilities can be found in an online DDS Manual.
Among other things, the DDS Manual establishes a four-tiered level of procedures for managing client funds of state-operated facilities, based on the ability of the client to participate in the management of their own money. The Manual also requires that each DDS Regional Business Office oversee the management of facility finances in that region and that each region establish an aggregate checking account known as a Client Fund.
The Manual notes, for instance, that for clients in state facilities who are unable to manage their own money, all Social Security and other checks received by the client are sent to the client’s individual account in the Client Fund, where the money earns interest. In addition, an in-house cash account is maintained for each client, and staff are required to keep standardized records to account for all money coming in and spent for that client.
Receipts must be kept as well for all purchases made by state facility clients other than from weekly cash allowances, and the Manual specifically states that clients will never pay for staff or other client costs.
The DDS Manual also establishes procedures to allow state facility clients, who are able to do so, to keep their funds in community bank accounts. Among the procedures listed is that all checking account transactions must be recorded and initialed by DDS staff. The Manual specifically prohibits DDS staff from signing a client’s checks or accessing a client’s personal bank account.
The DDS Manual further states that if there is a shortfall of cash on hand which cannot be accounted for, residential staff in the state facility must report this immediately to the Region’s Business Office. And the Manual states that personal funds cannot be used to purchase any item that the facility would be expected to provide as part of its responsibility to the client. This last rule would have prohibited the apparent practice at Humanidad of charging clients for services or items such as food and transportation.
As noted, DDS provides a set of guidelines for management of client funds by private providers; but a DDS official stated in response to a Freedom of Information request that the guidelines are not offical departmental procedures, policies, or regulations.
The DDS financial management guidelines for privately run group homes state, for instance, that all expenditures of client funds have to be for the benefit of the clients and must be recorded on a ledger. However, as neither of those things appears to be specifically required in the DDS regulations, it is unclear that any provider would be required to include them in its own policies and procedures.
We’ve previously reported here how federally regulated Intermediate Care Facilities such as STS have more stringent staffing requirements than do privately operated group homes in Connecticut, and how the process for investigating and licensing STS is more transparent and comprehensive than the privately operated group home system.
Policies and procedures regarding financial management of state versus privately operated facilities appears to fit this pattern as well. In all of these cases, policies and procedures, transparency, and oversight appear to be more abundant and stringent for the state-operated facilities and less so for the privately operated facilities.
We’ve already seen the recent results of allegedly poor financial mangement, staffing, and other policies on group homes operated by Humanidad and another provider, Options Unlimited. We doubt these same types of problems are likely to crop up at state facilities such as STS for all the reasons we’ve given here.
These are further reasons why we question the administration’s assertions that care and conditions in the privatized group home system in Connecticut are equal or better than they are at STS.
A review of the literature
By David Kassel
In the past two decades, there has been a major shift around the country in care for the intellectually disabled, as tens of thousands of people have been moved from larger congregate facilities to community-based group homes.
(This process has generally been referred to as “deinstitutionalization,” and I’ll use that term here despite the negative connotation of the word “institution.”)
This shift in care, accompanied by a large-scale privatization of residential and other services, has engendered much debate among policymakers and advocates for the disabled.
That debate has played out for decades in Connecticut, picking up steam with the closure in 1993 of the Mansfield Training School by then Governor Lowell Weicker, and the filing of a lawsuit in federal court in 1996 to close the Southbury Training School and move its residents into a mix of public and privatized facilities. Today, STS remains open, but many of the families and guardians of the residents there, who contend STS provides excellent care, are concerned that the state is moving to close it as quickly as possible.
In a recent letter to the STS Home & School Association, Terrence Macy, commissioner of the Department of Developmental Services, sought to reassure the families and guardians about leaving STS, stating, among other things, that:
[A] … significant body of rigorous studies has consistently concluded that persons who have transitioned out of institutions in fact have benefited from placement in the community.
Has the deinstitutionalization effort been an unqualified success, and does academic research support that claim?
I reviewed academic research on the topic of deinstitutionalization of the intellectually disabled. Much has been written in scholarly journals on this topic in the past 20 years, and I think it would be safe to say that the writers of those articles have given out both good and bad grades on the impact of deinstitutionalization on the well-being, health and longevity of the people involved.
Specifically, the studies I reviewed found that:
- Many people who were deinstitutionalized did indeed experience improvements in the quality of their lives and adaptive skills after being transferred to community-based group homes.
However, many of those same studies reported that:
- Many deinstitutionalized people have encountered a lack of adequate medical care in the community system, and quality of life and adaptive skills often did not improve for those who had the most profound levels of disability or who were older.
I’ll first discuss the studies I reviewed on the well-being of deinstitutionalized persons and then will discuss an academic controversy over a study that found a higher death rate among people who were deinstitutionalized in California than what would have been expected in the institutions they were moved from. (A list of the articles I reviewed can be found at the end of this post.)
Quality of life studies on deinstitutionalized persons
One of the more comprehensive reviews I was able to find of well-being or quality-of-life studies of deinstitutionalized persons was a 2011 article by Monali Chowdhury and Betsey Benson in The Journal of Policy and Practice in Intellectual Disabilities.
Chowdhury and Benson reported that their review indicated that relocation from institutions to community-based settings had a “general positive impact on life quality of participants.”
At the same time, Chowdhury and Benson stated that many of the studies they reviewed found that “improvements were most prominent shortly after the move and plateaued after a year.” While some studies showed gains in adaptive behavior in former institutional residents who had been moved to the community, they wrote, other studies “have shown neither significant increase in adaptive skills nor the maintenance of modest gains when moving to community group homes.”
Chowdhury and Benson also reported that in a number of studies, ”participants continued to have low levels of community integration,” and there was “some evidence that healthcare needs might not be adequately met in the community.”
A 2007 article in Current Opinion in Psychiatry by J. Beadle-Brown et al. contained the following summation of the academic literature on deinstitutionalization of the intellectually disabled:
Work on deinstitutionalization continues to show that outcomes are better in the community than in institutional care, but recent papers highlight that there is more to deinstitutionalization than just hospital closure. Just moving people out of institutions into community settings does not bring about automatic improvement in quality of life in terms of choice and inclusion as well as self-identity and access to effective healthcare and treatment. This is especially true for people with more severe intellectual disabilities as well as complex needs such as challenging behaviour.
Among the other studies I reviewed that drew similar conclusions that transfers from institutional to community care were often but not always successful was a 2010 overview of research by Patricia Noonan Walsh et al. in The Journal of Policy and Practice in Intellectual Disabilities.
Citing what they termed “post-deinstitutionalization” studies that they had reviewed, Noonan Walsh and her colleagues stated that these studies provided “consistent evidence for greater choice, self-determination, and participation in community-based activities in smaller settings, but no evidence for greater physical health or material well-being…”
In addition, a 1998 study in the journal Mental Handicap Research by Andrew Bratt and Rob Johnston of five intellectually disabled adults who had left a hospital to live in a “bungalow” in Exeter, England, concluded that while the staff considered the group as whole to be better off after the move:
…little evidence of integration being achieved within the local community was recorded; and there was little or no evidence of individuals being supported in ways that increased their competence, particularly in relation to participating at a simple level in routine domestic tasks.
Perhaps one of the reasons for the discordant findings among many researchers over the impact of deinstitutionalization is the difficulty in measuring that impact. That difficulty may have contributed to the disagreement among many policymakers and advocates as to whether deinstitutionalization has been beneficial or not.
Chowdhury and Benson noted that many of the studies they reviewed on deinstitutionalization relied on interviews with intellectually disabled persons to determine quality-of-life differences between institutions and group homes. However, other studies have found, they stated, that these interviewing techniques can be compromised by “response biases,” which “can seriously damage the reliability and validity of self-report data on subjective QoL (Quality of Life) in individuals with ID (intellectual disabilities).”
One 2000 study, for instance, by Jonathan Perry and David Felce in Mental Retardation, reported that two thirds of the respondents in a sample of 154 adults with intellectual disabilities were either unable to respond to questions in a structured interview about their quality of life or exhibited response bias. The authors noted that the most common form of response bias among people with intellectual disabilities is “the tendency to acquiesce, that is, to say yes to questions regardless of their content” (emphasis in the original).”
Chowdhury and Benson further noted that given those problems with response bias, “a knowledgeable proxy,” such as a staff member or parent, is often asked to respond on behalf of an intellectually disabled person to quality-of-life survey questions. However, they stated using such proxies is ”usually not seen as an accurate substitute” for measuring QoL of people with ID.”
The California mortality study controversy
A major area of disagreement among academic researchers appears to center around attempts to determine whether moving intellectually disabled persons out of institutions causes them to die earlier than they would have had they stayed in those facilities. This disagreement as well has spilled out into the policymaking and advocacy worlds.
I was recently criticized, for instance, by a leading opponent in Massachusetts of developmental centers for the intellectually disabled for citing a one such mortality study on deinstitutionalization that had been done on residents who were moved from institutions to community group homes in California in the 1990s.
In a recent blog post calling for saving the Glavin Regional Center in Massachusetts from closure, I wrote that a 2005 paper by Robert Shavelle, David Strauss, and Steven Day in The Journal of Data Science, reported that the authors had analyzed data on more than 1,800 children and adults who had been deinstitutionalized in California between 1993 and 1996. The authors found that as of 1999, there were 81 deaths among those who had been transferred from institutions to community-based group homes. Using statistical regression, Shavelle et al. reported that the death rate represented a 47 percent increase in mortality over that expected in institutions.
Shavelle and Strauss concluded that the increase in deaths appeared to reflect less intensive medical care and supervision available in the community.
I wrote the post on behalf of the Massachusetts Coalition of Families and Advocates, Inc. (COFAR), a nonprofit organization that I consult for and that advocates on behalf of the intellectually disabled and their families.
COFAR, along with Strauss and Shavelle, were criticized by Gary Blumenthal, president of the Massachusetts Association of Developmental Disabilities Providers (ADDP), who wrote in a comment (under the user name “dcjayhawk”) to my post that:
COFAR…attempts to frighten families by telling them of higher mortality rates in community programs versus ICF (Intermediate Care Facility) programs by citing a flawed 1993-1998 California mortality study whose methodology and findings have been discredited by multiple expert researchers…
Blumenthal went on to cite four studies that he claimed discredited the work of Shavelle and Strauss. (More about that below.) The ADDP, which represents nonprofit operators of group homes in Massachusetts that contract with the state Department of Developmental Services, supports the closure of all remaining developmental centers in Massachusetts and the transfer of all of their residents to community-based group home programs.
The California mortality research of Shavelle and Strauss was also criticized by Macy, the Connecticut DDS commissioner. In the same letter to the Southbury Training School Home & School Association referred to earlier, Macy maintained that:
The California study is well over twenty years old. Its research methodology of contrasting deaths that occurred in the community to “those expected in institutions” is no longer a viable research methodology. I would doubt this research design would even be accepted for publication in today’s research periodicals. That study has been replaced with a large number of studies that have been conducted throughout the country over a long period of time. Many of these studies are longitudinal so by design they follow persons who have moved over extended periods.
Have the Shavelle study and earlier versions of it by Strauss really been discredited and are they really over 20 years old?
In answer to that second question, I would note that Strauss and co-author, Theodore Kastner, first published findings of a higher mortality rate among deinstitutionalized persons in California in 1996 in The American Journal on Mental Retardation. The article by Shavelle and Strauss, which I cited in my BMG blog post, was an update of the original study, and was published in 2005 in The Journal of Data Science. Thus, even Strauss’s earliest findings do not appear to be more than 16 years old, and the work done by him and his colleagues on this topic was accepted by a peer-reviewed periodical only seven years ago.
Strauss’s research website lists a total of 10 studies and one commentary on mortality issues associated with deinstitutionalization that he co-authored with a total of eight colleagues. Strauss himself is professor emeritus of statistics at the University of California, while Shavelle has been a visiting assistant professor at the University of California and has a Ph.D. in statistics. Kastner, a physician, has held associate professorships at the New Jersey Medical School and the Columbia University College of Physicians and Surgeons.
I reviewed all four of the studies cited by Blumenthal of the ADDP as having discredited Straus’s methodology and findings. What I found is that, as with the studies on the quality of life of intellectually disabled persons, studies on mortality rates of people who have been deinstitutionalized often reach differing conclusions.
I also found that while three of the four studies cited by Blumenthal did dispute the mortality findings of Strauss and his colleagues in the 1990s in California, two of those three were largely respectful of Strauss’s work. (More about the exception below.) Strauss and his colleagues, as far as I can tell, have not been discredited. The fourth study cited by Blumenthal as having discredited Strauss’s California mortality studies actually did not directly address that topic at all.
I would also note that each of the studies cited by Blumenthal that did dispute the mortality findings of Strauss and his colleagues was done by researchers who disclosed consulting relationships with state agencies that had or were seeking to close developmental centers. In my view, those relationships raise questions about the independence of those studies.
As noted, only one of the articles cited by Blumenthal was actually overtly critical of Strauss et al. and their methodology. That critical article, titled “Commentary on the mortality issue,” by James Conroy and Miriam Adler, was published in the journal Mental Retardation, in October 1998.
In the commentary, Conroy and Adler cited a 1995 study they undertook on the transfers of residents from the Pennhurst Developmental Center in Pennsylvania, and stated that they had found a “sharply decreased risk of death when people moved from institution to community.” They termed Strauss’s 1996 finding of a higher death rate in the community system “utterly false” and compared it to the discredited discovery of cold fusion.
It should be noted that Kastner returned the favor, critiquing Conroy’s methodology in a number of papers, including a 2000 article in Mental Retardation concerning Conroy’s Pennhurst closure study. Kastner also co-authored a 2006 article with Kevin Walsh in the same journal, titled “The Hissom Closure in Oklahoma: Errors and Interpretation Problems in Conroy et al. (2003).”
In that 2006 article, Walsh and Kastner charged that the research of Conroy and his colleagues had been “seriously compromised by data collection problems and discrepancies between reported findings and those obtained when the analyses were replicated.”
Several of Conroy’s reports were also criticized in the 1990s by former staffers of the California Department of Developmental Services, according to the May 1996 issue of Outreach, a publication of the California Association of Psychiatric Technicians. The journal article, titled “Conroy Reports Controversy,” also stated that Philip Bondy, who is a former chair of Yale’s Department of Internal Medicine and an STS Home & School Association Board member, was critical of a study done by Conroy on the outcomes of the closure of the Mansfield Training School in Connecticut.
Bondy emailed me that his criticism was based on Conroy’s reliance in the Mansfield study on quality-of-life interviews with attendants in community-based group homes as proxies for former Mansfield residents. “There is no reason to believe that the attendants were unprejudiced,” Bondy wrote, “since they were employed in providing community care and might reasonably expect to give favorable answers. Although Conroy quoted statistics in support of his conclusions, I believe that they were based on faulty data,” he added.
Bondy is a former editor in chief of both The Journal of Clinical Investigation and The Yale Journal of Biology and Medicine.
Conroy’s resume indicates that he authored or co-authored hundreds of reports on the well-being of deinstitutionalized residents, most of which appear to have been submitted to state agencies running ICFs and community-based facilities or to entities such as the Institutional Closure Commission of Ohio. I think that may raise some questions about his independence in researching this issue.
A second article cited by Blumenthal as having discredited the work of Strauss and his colleagues on mortality rates in California was a 1998 study by Kevin O’Brien and E.S. Zaharia. The study, titled ”Recent mortality patterns in California,” was published in the same issue of Mental Retardation in which the Conroy commentary was published.
The O’Brien and Zaharia study found no increased risk of death in the community for the same population that Strauss and his colleagues had studied. But far from discrediting Strauss’s results, O’Brien and Zaharia stated that the reasons for the discrepancies between the two studies were “unclear.” They acknowledged that due to validity problems with databases used to analyze the number of deaths, “there may have been quite a bit of contamination in all of our analyses.”
In a separate commentary in the same issue of the journal (titled “Is it Life Threatening to Live in the Community?”), O’Brien and Zaharia stated: ”We believe that the suggestions made by Strauss et al. (1998) (about closely monitoring initial placements of residents in community settings) should receive thoughtful debate.”
O’Brien and Zaharia disclosed in their papers that they were consultants to the California Department of Developmental Services.
A third study cited by Blumenthal as discrediting the Strauss studies was done by Paul Lerman, Dawn Hall Apgar, and Tameeka Jordan and published in Mental Retardation in August 2003. This study did not find evidence that moving residents out of a developmental center in New Jersey and into the community caused more deaths. However, the authors concluded that the difference between their results and Strauss’s findings could be due to variations in policies in the two different states on deinstitutionalization or to differences in population characteristics.
Lerman et al. also noted several limitations to their own study, including limitations on the reliability of their behavioral variables. The study was hardly an effort to discredit Strauss and his colleagues.
The Lerman study, by the way, was funded by the New Jersey Division of Developmental Disabilities.
The final study cited by Blumenthal as discrediting the Strauss studies was actually concerned with the well-being of people transferred from nursing homes to community residences. The 1998 study, by Tamar Heller, Alan Factor, and Kelly Hsieh, in The American Journal on Mental Retardation, mentioned Strauss’s research in passing and was not in any way critical of it.
In a defense of their work, published in the same 1998 issue of Mental Retardation as the Conroy and O’Brien and Zaharia articles, Strauss and Shavelle maintained that they were not attempting to evaluate “the merits of institutional versus community living,” and were not arguing that persons living in the community should move or return to a state institution.” Instead, they said, “[o]ur concern was with the quality of health care and supervision currently available in the community.”
In that commentary, Strauss and Shavelle cited a Congressional subcommittee report, newspaper reports on avoidable deaths in California group homes, and a critical report on the community system in California by the federal Health Care Finance Agency as buttressing their findings.
This review of the academic literature on institutional versus community-based care for the intellectually disabled is admittedly far from exhaustive. But I think most researchers in this field would probably agree that I’m correct in concluding at least one thing about the research that has been done on this topic: That is that there is no clear consensus among scholars that either system of care is better in all respects for all intellectually disabled people.
Both of the advocacy organizations that I work for believe that the community-based system is appropriate and beneficial for the majority of people with intellectual and developmental disabilities. At the same time, both organizations also maintain that for a portion of this population with severe and profound levels of disability as well as those who who are older or have complicated medical conditions, institutions such as STS continue to play a vital role in their care.
Both COFAR and the Southbury Training School Home & School Association are nonprofit organizations that advocate for families and guardians of intellectually disabled residents of state-run facilities. Many of those facilities have been targeted for closure by state administrators who, in many cases, appear to believe that all intellectually disabled persons should live in the community system.
I hope this survey of the literature on this topic will persuade at least some of those administrators as well as legislators, policymakers, and others that those in the academic community, who have looked at this issue objectively and scientifically, have not reached a consensus that the community is better for everyone. Instead, the scholarly literature on this topic appears to support the contention that “one size doesn’t fit all.”
References for this post:
Beadle-Brown, J.; J. Mansell; and A. Kozma, “Deinstitutionalization in intellectual disabilities. Current Opinion in Psychiatry, 2007, 20(5):437-42.
Bratt, A. and R. Johnston, “Changes in life style for young adults with profound handicaps following discharge from hospital care into a ‘second generation’ housing project,” Mental Handicap Research, 1998, 1(1): 49–74.
Chowdhury, M., and B. Benson, “Deinstitutionalization and Quality of Life of Individuals With Intellectual Disability: A Review of the International Literature,” Journal of Policy and Practice in Intellectual Disabilities, 2011, 8(4): 256–265.
Conroy, J., and M. Adler, “Commentary on the mortality issue,” Mental Retardation, 1998, 36(5).
Cullen, C.; M. Whoriskey, K. Mackenzie, W. Mitchell, K. Ralston, S. Shreeve, and A. Stanley, “The effects of deinstitutionalization on adults with learning disabilities,” Journal of Intellectual Disability Research, 1995, 39(6): 484–494.
Heller, T.; A. Factor, and K. Hsieh, “Impact of age and transitions out of nursing homes for adults with developmental disabilities,” The American Journal on Mental Retardation, 1998, 103(3).
Kastner, T., ”On the Need for Policy Requiring Data-Sharing Among Researchers Publishing in AAMR Journals: Critique of Conroy and Adler (1998),” Mental Retardation, 2000, 38(6): 519-529.
Lerman, P.; D. Apgar, and T. Jordan, “Findings of a Controlled Research Design in New Jersey,” Mental Retardation, 2003, 41(4): 225-236.
Noonan Walsh, P.; E. Emerson, C. Lobb, C. Hatton, V. Bradley, R. Schalock, and C. Moseley, “Supported Accommodation for People With Intellectual Disabilities and Quality of Life: An Overview,” Journal of Policy and Practice in Intellectual Disabilities, 2010, 7(2): 137–142.
O’Brien, K., and E.S. Zaharia, “Recent mortality patterns in California,” Mental Retardation, 1998, 36(5).
O’Brien, K., and E.S. Zaharia, “Is it life threatening to live in the community? Commentary,” Mental Retardation, 1988, 36(5).
Perry, J. and D. Felce, “Subjective and Objective Quality of Life Assessment: Responsiveness, Response Bias, and Resident: Proxy Concordance,” Mental Retardation, 2002, 40 (6): 445–456
Shavelle, R.; D. Strauss, and S. Day, “Deinstitutionalization in California: Mortality of Persons with Developmental Disabilities After Transfer Into Community Care, 1997-1999,” Journal of Data Science, 2005, 3(4): 371-380.
Strauss, D. and T. Kastner, (1996). “Comparative mortality of people with mental retardation in institutions and the community,” American Journal on Mental Retardation, 1996, 101(1): 26-40.
Strauss, D. and R. Shavelle, “Policy Implications of Mortality Research: What Can We Learn From the California Mortality Studies?” Mental Retardation, 1998, 36(5).
Walsh, K., and T. Kastner, “The Hissom Closure in Oklahoma: Errors and Interpretation Problems in Conroy et al.,” Mental Retardation, 2003, 44( 5).
Weismann, C., and K. Hearn, “Conroy Reports Controversy,” Outreach, May 1996.
By David Kassel
As we’ve previously noted here, recent allegations of substandard care and other problems in privately run, state-funded group homes have raised our concern about the safety of the state’s community-based system of care.
The Department of Developmental Services, as we’ve also reported, has stepped up long-standing efforts to persuade family members and guardians of Southbury Training School residents to move their loved ones to that community system.
While many group homes in Connecticut are undoubtedly excellent, a series of articles in May and June in The Hartford Courant reported on a number of issues in Hartford-area group homes operated by a provider called Humanidad. Those issues included employee allegations that staffing shortages were creating a dangerous situation in the homes, that the residences lacked basic resources such as groceries and activity programs, and that the clients in general were receiving subpar treatment.
Since those articles were published, even more troubling allegations of abuse surfaced in July concerning a second Hartford-area group home provider, Options Unlimited. The Courant reported earlier this month that a caregiver at an Options Unlimited group home, who had been caught on videotape hitting a resident with a belt and dragging her by her hair, told police he felt she had to prove herself to fit in with the staff, “like a gang.”
The woman told police about a mob mentality among the workers at the group home, according to the newspaper, which stated that eight or nine workers at the home had previously been terminated for abuse.
In our view, all of these cases raise questions about the policies of group home providers in Connecticut regarding staffing of their residences. They also raise the question whether DDS regulations and policies regarding group home staffing are adequate.
An online guide to state inspectors of Intermediate Care Facilities for the developmentally disabled (ICFs) such as STS states that “there is often a relationship between the adequacy of facility staffing and staff treatment of individuals.”
We examined staffing regulations governing both the DDS group home system in Connecticut and ICFs and found some differences that are concerning. (Staffing in group homes is governed by state regulations [17a-227-13], while staffing levels at ICFs such as STS are governed by federal Medicaid regulations [42 CFR 483.430].)
In this post, I’ll discuss regulations that pertain to the adequacy of staffing levels in group homes and ICFs. We are continuing to examine state and federal regulations that are concerned with staff training in group homes and ICFs.
Minimum staffing requirements
The major difference we’ve found between group home and ICF regulations regarding staffing levels is that the ICF regulations appear to be much more specific in requiring minimum levels of staffing and what the staffing levels are intended to accomplish than are the state’s group home regulations.
DDS group home regulations state that direct-care staffing levels in those residences must be “sufficient” to “ensure the residents’ essential requirements for health and safety are met.” There is no requirement that the homes maintain a minimum level of direct-care staff or licensed medical, clinical, or therapeutic staff.
The only staffing specified in the group home regulations, other than direct-care staffing, is for nursing: DDS regulations state that the group home provider ”shall provide nursing services in accordance with individual needs.”
Interestingly, the DDS staffing regulations for group homes further state that a residence will not be considered to be in violation of the regulations if its staffing levels are “consistent” with the amount of state funding the provider receives. We interpret this to mean that if a provider of a group home were found to have an inadequate number of staff, it could successfully argue that it was not receiving sufficient funding from the state to hire more staff. That could conceivably result in a situation in which a group home could remain understaffed with no loss of its license to operate.
On the other hand, federal regulations that apply to ICFs such as STS specify that direct-care staff must be on duty 24 hours a day, and that there be a minimum ratio of 1 direct-care staff to every 3.2 residents with severe and profound levels of disability, 1 to 4 for moderately disabled residents, and 1 to 6.4 for mildly disabled residents.
The federal regulations also state that ICFs such as STS must have sufficient ”qualified professional staff to carry out and monitor the various professional interventions in accordance with the stated goals and objectives of every individual program plan.”
This is more specific language than the DDS staffing-level regulations because the federal regulations refer to the individual’s care plan. This requires a facility such as STS to have a wide range of professional staff available on site. As noted above, the state group-home regulations say only that staffing levels be sufficient to ensure that “residents’ essential requirements for health and safety are met.”
The federal ICF regulations also specify that each facility must have a “qualified mental retardation professional” to coordinate and monitor each resident’s active treatment program. That professional must meet specific qualifications, including having at least one year of service in the field.
Hiring and evaluating staff
There are a number of other apparent differences between group home and ICF staffing regulations. One is that the state group home staffing regulations leave policies regarding such things as hiring of group home staff, performance expectations, duties and responsibilities, and evaluation and termination of staff up to the individual providers.
Given that there are hundreds of providers in the DDS system, the regulations appear to allow for hundreds of different policies concerning the hiring and evaluation of staff. This is in contrast to STS where uniform and standardized hiring and evaluation policies apply.
Who can administer medications
An additional difference between ICF and group home staffing requirements concerns the administration of medications.
State law in Connecticut exempts group homes from a requirement that applies to facilities such as STS that only licensed personnel administer medications to residents. As explained in an online DDS Medical Advisory, state law requires licensed staff to administer medications in residential facilities with 16 or more residents, such as STS. But the law exempts residences with 15 or fewer residents from that requirement.
“Licensed personnel” is defined as doctors, dentists, nurses, and pharmacists. Under the law, unlicensed personnel can administer medications in facilities with less than 16 residents after taking a 21-hour course and passing a test.
For all of the reasons noted above, it’s clear to us that there are two very different systems of regulation for staffing in DDS residential facilities in Connecticut. The system that applies to group homes is looser with regard to staffing than that which applies to STS.
Unlike STS, Connecticut group homes have no required minimum staffing levels, and the amount of staff required is not tied to the residents’ care plans. In addition, each provider in the state is free to develop its own plans for hiring, evaluating, and terminating staff. And unlicensed personnel are allowed to administer medications in group homes.
The situation at ICF facilities such as STS is very different. Minimum staffing levels are specified at STS, and the staffing levels must be adequate to meet each resident’s individual plan of care. Moreover, only licensed personnel such as doctors and registered nurses are authorized to administer medications at STS.
It seems to us that had these more strict staffing standards applied to the group home system in Connecticut, there would be less likely to be situations in which the staff were dominated by a mob mentality that promoted abuse and neglect or that certain homes would be experiencing staffing shortages that resulted in substandard care.
This is one of the reasons that STS guardians are leery of the claim that care and conditions in all or even most community-based group homes are just as good as they are at STS. It is also a reason that the STS Home & School Association disagrees with a DDS policy of redacting potentially important information about deficiency citations in group home inspection reports.
As we previously reported, inspection reports done on STS are not redacted, other than removing the names of residents; and those STS inspection reports appear to be far more comprehensive than the reports done of group home inspections.
Given that there appear to be relatively loose regulations governing group home staffing, in particular, it is vital that anyone seeking to place a loved one in a community-based residence have access to full and complete information about those residences in order to distinguish the good ones from the bad.
By David Kassel
Guardians and family members have had peace of mind over the years regarding the safety and care of their loved ones at the Southbury Training School, and data from the state Office of Protection and Advocacy appear to bear this out.
We compared data provided by the OPA on abuse and neglect incidents at STS and in group homes in Connecticut from 2002 to 2012. The OPA’s Abuse Investigation Division monitors investigations by the Department of Developmental Services of allegations of abuse and neglect of DDS clients between the ages of 18 and 60.
According to the OPA, there were a total of 158 alleged incidents of abuse and neglect at STS in the 10-year period. Based on a current population at STS of 450, that is a rate of 0.35 incidents per resident. In the group home system, in contrast, we calculated a rate of abuse and neglect incidents per resident at 1.04.* The apparent rate of abuse and neglect was nearly three times higher per resident in the group home system than at STS over the past 10 years.
Ironically, James McGaughey, the OPA’s executive director, is a fervent supporter of closing STS and recently argued in The Hartford Courant that the state has “a moral imperative” to move STS residents into community-based group homes because STS is too institutional. STS guardians, McGaughey wrote, want their wards to stay at STS only because they are “invested in placement decisions they (or their now-deceased parents) made years ago…” He declined to give those guardians credit for recognizing that STS provides excellent care and keeps their loved ones safe.
In fact, one has only to read any of several recent Courant articles concerning safety and other substandard care issues in the DDS community-based system to understand the concern STS guardians have about ongoing pressure to move their loved ones out of STS. While those guardians would love to further McGaughey’s aim of making communities “richer and stronger” by having intellectually disabled persons live there, they have to first be assured that their loved ones will equal or better care in community-based group homes and will be as safe as they were at STS.
- The Courant reported on May 9 that DDS was questioning in an audit why the executive director of Humanidad, a Hartford-based, state-funded group home operator, had hired his son to undertake internal investigations of abuse and neglect complaints against staff despite the son’s arrest on a variety of domestic violence charges in 2008.
- On May 18, the Courant reported that a series of internal memos alleged problems at Humanidad group homes, ranging from staff insubordination to neglectful care. The memos noted that various staff members skipped work without notifying the agency, went shopping and attended to personal errands during their shift, refused on one occasion to accompany a client to the emergency room, and periodically missed giving clients their medications at the scheduled times.
- On June 15, The Courant reported that a group of Humanidad employees had sent an unsigned letter to DDS and to the company’s executive director, alleging that staffing shortages were making the residences unsafe, that there weren’t enough resources to support community activities or buy groceries, and that “many employees have reported some of these incidents and nothing has been done.” The provider, meanwhile, was operating about $61,000 in the red, according to the newspaper.
The Courant has also recently reported on deaths of DDS clients living in nursing homes. The paper reported on June 13 that as of the end of April there have been three fatal chokings at Connecticut nursing homes in three months and that two of those who died had been developmentally disabled.
In the latest case, an intellectually disabled patient on a soft-food diet at the Meridian Manor nursing home in Waterbury died after choking on take-out meatballs and ziti delivered directly to the patient’s room while nursing staff was not present. On March 6, an 82-year-old intellectually disabled resident of the Aurora Senior Living Center in Cromwell died after choking on marshmallows.
Both the group home and nursing home cases recounted in The Courant are of concern to STS guardians. While most residents leaving STS would be transferred to group homes, many STS guardians are concerned that those group homes will be increasingly unable to care for their wards as they advance in age, and that nursing homes will become the only alternative for them.
Nursing homes, however, are not generally equipped to provide the specialized care needed by people with intellectual disabilities. And to the extent that a nursing home, like a group home, is not financially viable, the long-term outlook for a former STS resident who ends up in such a facility is likely to be one of continual uncertainty.
The Courant reported on June 13 that the Wethersfield Health Care Center, a nursing home, was closing because the company that runs it was experiencing financial losses. The result is that the 66 remaining residents there will have to find other homes. The company, HealthBridge, has threatened to close all six of the nursing homes it runs in Connecticut due to a dispute over health care benefits of employees with the Service Employees International Union District 1199, according to The Courant.
Ann Marie Mangiagli, the mother of a resident at the Wethersfield nursing home, told The Courant that the closure had made her feel powerless. “We’re moved around like chess people, like we have no say at all,” she said.
That’s exactly the way guardians and family members at STS are starting to feel, after years of peace of mind.
*The group home abuse rate is based on 3,554 reported incidents over the 10-year period, according to OPA data, and a current group home population of 3,402, according to figures from the Legislature’s Program Review and Investigations Committee.