COFAR blog

Deinstitutionalization has not been a uniform success 

Judge Tauro believed in the importance of a continuum of care for people with intellectual and developmental disabilities (I/DD), and knew that institutions such as Fernald had an important role to play in it. In his 1993 disengagement order, he maintained that facilities such as Fernald should not be closed unless it was certified that each resident would receive equal or better care elsewhere.

As the years went on, the promise of equal or better care in the community was not realized. Deinstitutionalization has turned out to be fraught with problems for people with I/DD just as it has for people with mental illness. Between 2000 and 2014, the VOR, our national affiliate, catalogued hundreds of cases of abuse and neglect in privatized group homes around the country.

In testimony in 2018 to a legislative committee, Nancy Alterio, executive director of the Massachusetts Disabled Persons Protection Commission (DPPC), stated that abuse and neglect of persons in the Department of Developmental Services (DDS) system had increased 30 percent in the previous five years, and had reached epidemic proportions.

Alterio’s testimony came long after the State of Massachusetts had begun to rely primarily on privatized, community-based group homes for residential care of persons with I/DD, and long after the state had phased out and closed all but two state-run ICFs comparable to Fernald.

Our own analysis of more than 14,000 allegations of abuse made to the DPPC showed that the rates of substantiated abuse and neglect per client in those two remaining ICFs — the Wrentham Developmental Center and the Hogan Regional Center — were practically zero between Fiscal 2010 and 2019.

Yet many advocates for corporate providers, such as the Arc of Massachusetts, have pushed for decades for complete deinstitutionalization and for additional privatization of services for people with I/DD. They have been joined by administrations at the state and national levels, which have continually made state-run care and services targets for closure and outsourcing to contracted providers.

Since 2009, the U.S. Justice Department has filed, joined, or participated in lawsuits around the country to close ICFs regardless of whether the residents or their families or guardians wanted to close the facilities they were living in or not.

Fernald’s opponents have misinterpreted the landmark Olmstead v. L.C. Supreme Court decision

Those advocates of deinstitutionalization and privatization have consistently misinterpreted the 1999 Olmstead v. L.C. U.S. Supreme Court decision, which held that institutional care is appropriate for those who desire it and whose clinicians recommend it.

The late Justice Ruth Bader Ginsburg wrote the majority opinion in Olmstead, which has been characterized as holding only that unjustified isolation in institutions is “discrimination based on disability.” But that statement is only half the holding of Olmstead.

There was another major element of Justice Ginsburg’s Olmstead decision that has continued to be disregarded by many who have then gone on to mischaracterize the decision as advocating or requiring the end of institutional care. It didn’t. As the VOR has pointed out, Justice Ginsburg wrote a balanced decision that “supports both the right to an inclusive environment and the right to institutional care, based on the need and desires of the individual.”

Justice Ginsburg’s majority opinion held that:

We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings. . . Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.

As Justice Ginsburg stated, community-based care is an appropriate option for those who desire it, whose clinicians support it, and in cases in which states have the resources to reasonably support care in the community system. Unless all three of those conditions hold, institutional care may well be the appropriate setting.

Fernald’s families fought the closure of Fernald from 2003 through 2014 

In 2004, the plaintiffs in original Ricci v. Okin consent decree litigation asked Judge Tauro to reopen the case, arguing that the then Romney administration was illegally trying to close Fernald, and was thereby violating the terms of Tauro’s disengagement order. Those plaintiffs included families and guardians of Fernald residents, and members of COFAR and other advocacy organizations.

In February 2006, Tauro appointed then U.S. Attorney Michael Sullivan as Court Monitor in the case and asked Sullivan to review the transfers of 49 residents from Fernald since 2003. Sullivan ultimately recommended to the newly installed Patrick administration that Fernald remain open.

In making the recommendation, Sullivan maintained in his report to Tauro that while the level of care there might be able to be duplicated elsewhere, the loss of familiar surroundings and people “could have devastating effects [on the residents] that unravel years of positive, non­abusive behavior.”

Tauro subsequently ruled that the families at Fernald must be given the option of remaining there. But the Patrick administration ignored Sullivan’s recommendation and appealed Tauro’s ruling to the U.S. First Circuit Court of Appeals. The Circuit Court of Appeals overruled Tauro, without giving deference to his expertise in the case; and the Patrick administration proceeded to phase down and close Fernald and later three other ICFs of the six remaining in the state.

By 2014, the year Fernald was closed, some 14 families were still fighting legal and administrative battles to keep the facility open for their loved ones because they believed the care there was better than in the community-based system.

Those families came in for relentless media criticism and blame from lobbyists for corporate providers, who were seeking to close Fernald and the remaining state-run centers, and to garner the lucrative state contracts that would result from it.

The incestuous nature of the privatized system

The closures of ICFs around the country and the rise of the privatized system of care have provided enormous financial windfalls for politically connected corporate contractors. Their executives have garnered huge increases in their personal compensation, but have frequently neglected to pass through the ever higher levels of state funding to direct-care workers. That is one of the reasons for the epidemic of abuse and neglect in the corporate provider-based system of care.

In 2015, we calculated that more than 600 executives employed by corporate human service providers in Massachusetts received some $100 million per year in salaries and other compensation. By our calculations, state taxpayers were on the hook each year for up to $85 million of that total compensation.

As noted, the line item in the Massachusetts state budget for DDS-funded residential providers has been boosted by hundreds of millions of dollars since Fernald’s closure. Yet, as Massachusetts State Auditor Suzanne Bump’s office reported in 2019, while that boost in state funding resulted in surplus revenues for the providers, those additional revenues led to only minimal increases in wages for direct-care workers.

Administrations mistakenly believe closing ICFs will save money

Much of the justification for, and reasoning behind, closing developmental centers has been based on the fact that providers pay lower wages than do public agencies to direct-care workers. Successive administrations in Massachusetts have also sought to operate the ICFs as inefficiently as possible in order to make them appear as expensive as possible, thereby justifying their closure.

In 2014, the Fernald Working Group, a coalition of local organizations, had recommended a cost-effective approach to care in that setting. Their proposal was that the Fernald Center be downsized and converted to group homes on a portion of the campus while the remainder of the campus was opened to development, open space, and other uses.  Similar proposals had been made over the years by the former Fernald League and COFAR.

But the then Romney and subsequent Patrick administrations were interested only in one thing — closing Fernald and three other ICFs in the state, contending the state would save tens of millions of dollars a year in doing so. They never considered any of the proposed alternatives to the closures.

That there isn’t necessarily a long-term fiscal savings in transferring people from developmental centers to decentralized, provider-based care has been acknowledged even by one of the leading proponents of deinstitutionalization in the Obama administration.

In a law journal article, Samuel Bagenstos, a former top litigator in the Justice Department’s Civil Rights Division, acknowledged that any cost savings in closing developmental centers “will shrink as people in the community receive more services.”

He added that a significant part of the cost difference between institutional and provider-based care “reflects differences in the wages paid to workers in institutional and community settings — differences…that states will face increasing pressures to narrow.”

Today, as noted, two ICFs remain in Massachusetts – the Wrentham Developmental Center (WDC) and the Hogan Regional Center in Danvers. We rarely, if ever, hear that families or guardians are unsatisfied with the care there.

Mary Ann Ulevich, a COFAR member and a member of the Wrentham Board of Trustees and of the Wrentham Family Association, wrote to DDS Commissioner Jane Ryder in November 2019 in praise of the care her cousin, Tom Doherty, had received at WDC. Tom had died on October 24 at the age of 68. Ms. Ulevich wrote:

I just want you to know how proud you can be of the work carried out at WDC. I know that the philosophy of care for those with intellectual disability is to provide support to remain in their community with their families, with guidance and services. I fully support this contemporary approach, but acknowledge that there are many who because of their history and challenges, and/or because of the progression of their needs combined with diminished family and community resources, can and do thrive in facility-based care.

Here are additional accounts of the value that families put today on the care at WDC.

Apparently, if we keep blaming Fernald and other congregate-care facilities for all of the dysfunctionality of the DDS system, we will not have to admit that the problems with abuse and neglect and financial mismanagement in the system primarily lie elsewhere.