Originally published in Medium on September 27, 2021. Another version appeared as “The Group Home Racket” in Dollars and Sense in November/December 2021.
The Biden administration’s proposed $3.5 trillion investment in the “care economy” is an unexpectedly apt concept now that the pandemic is not exactly over. The lion’s share of the funds is meant to stand up a “human infrastructure” around perennial gaps in child and elder care. A smaller amount, approximately $100 million attached to the U.S. Senate’s Better Care, Better Jobs Act, could permanently alter the situation of disabled adults. A proposed change in the formula behind Medicaid reimbursements to U.S. states for residential care would widen access to home- and community-based services at the expense of congregate care facilities, where many disabled adults have suffered the pandemic. The legislation reflects the good-government convictions of progressive Democrats. A population that does not vote, tweet, or shop normally counts for nothing in the calculation of national priorities.
A lot of Americans know a little of the pertinent history. In the nineteenth century, our forebears interned thousands of disabled adults in state-run schools and asylums. Local newspapers and magazines periodically exposed spates of injuries and deaths that ensued from the horrific conditions in these state institutions. But a consensus on their legitimacy went unchallenged for more than a century. Then, in the 1970s, the gears of social policy slammed into reverse. State governments from Michael Dukakis’s Massachusetts to George Wallace’s Alabama and Ronald Reagan’s California manumitted the captives and began to resettle them in group homes located in neighborhoods and operated by private providers. A new and novel political economy took the oxymoronic form of the human service corporation. The legislation now pending in Congress aims, in effect, to complete a jagged half-century of “de-institutionalization.”
That a cruel paradox has dogged de-institutionalization is less well known. The upwelling of shame and anger that engulfed the state institutions in the 1970s reflected the rediscovery of collective action. Yet this conscience-stricken movement ended by reducing government to a purchasing agent in thrall to a business vanguard.
The same paradox has shaped the broader chronicle of American social reform. A burst of shame assails the collective conscience and impels policy reversals, which then wind up serving the narrow class interests of the reformers. The campaign to abolish of chattel slavery, for example, followed an arrow of humanitarian sensibility that rose over Europe and America after 1750. Then the growth of industrial methods of production ushered the newly emancipated into “wage slavery” at factories owned by antislavery partisans and agitators.
De-institutionalization, like emancipation, has entailed a vast and inarguable improvement in conditions, by any standard of comparison. Thanks to this movement, a presumption against coercion has girded the seams of disability law, education, medicine, and social policy. Yet the same movement created the first publicly financed, privately operated proprietorships in the history of American disability provision, yoking disabled adults to a phalanx of human service corporations that incubate self-enriching executives, trammel trade unions, and pinch profits from spheres of social existence previously spared the crucible of commerce. As dwellings have become smaller, providers have grown larger.
The resulting conflict of interest, between care and profit, has often resolved itself at the expense of the clients. In 2015, a ProPublica investigation tracked deaths in group homes operated by AdvoServ in Florida, Delaware, and New Jersey. “The sprawling system of privately run residential programs is quietly — and with few repercussions — amassing a record as grim as the institutions it replaced,” reporter Heather Vogel concluded. More recently, a series of audits by the Inspector General of the U.S. Department of Health and Human Services (HHS) has found violations of health and safety requirements in provider agencies in Alaska, Connecticut, Illinois, Iowa, Kentucky, Louisiana, Maine, Minnesota, Mississippi, Pennsylvania, Texas, and Wisconsin.
Whether the pending legislation can ameliorate the epidemic of violence we may never learn. No federal agency tallies abuse accusations or tracks providers. No federal statute comparable to the Violence Against Women Act has been enacted. No national history of de-institutionalization has been published. Medicaid reimbursements are powerful incentives, but far from sovereign edicts. How disabled adults are habilitated shall remain the due discretion of states and their agency subcontractors, with all the variability so entailed.
Removing the canker of abuse will require something other than tinkering with funding formulas. What explains our society’s tolerance for violence against its most vulnerable members? Federal investment in the “care economy” seems sure to improve material conditions. The way to overcome the paradoxical history of disability reform, however, is to acknowledge and then transcend the conflict it created between care and profit.
Massachusetts, where I live, opened America’s first state institution for the intellectually disabled in 1851. Today, private providers superintend more than ninety percent of its group homes. HHS has accused them of neglecting to report and investigate hundreds of clients’ visits to hospital emergency rooms for gangrenous bedsores, second-degree burns, cracked spinal cords, swallowed razor blades, lacerated skulls, and drug overdoses. The pandemic turned the seamy side of agency operations from inscrutable to invisible. Nancy Alteiro, the Executive Director of the Massachusetts Disabled Persons Protection Commission (DPPC), says the quarantine further hampered her commission’s capacity to police the provider agencies. “Abuse reporting went down as the state closed,” she told me in April, “and when the state began to open up again last summer, we saw an increase in reporting. When the state closed down again, we saw a decrease in reporting. So that has been a big concern for us.”
Then again, reporting during normal times is also concerning. The DPPC receives approximately 13,000 allegations every year. “There’s no day that goes by that we don’t receive reports,” Alteiro says. “Seven days a week, 365 days a year. When you see the numbers, they’re staggering. It’s been a problem for a long time.”
One of the provider agencies that DPPC monitors, Toward Independent Living and Learning (TILL), caters to adults with developmental disabilities in 60 group homes nested in 27 cities and towns in Greater Boston. Banking approximately $40 million annually in public payments, and serving as one of the state’s seven Autism Support Centers, TILL is a stable, trusted, middling agency, neither notorious nor celebrated — one of hundreds of similar organizations operating quietly across the country. TILL exemplifies the quotidian corruption that mars the current, conflicted system.
TILL’s founder, Dafna Krouk-Gordon, is President and Treasurer of its Board of Directors as well as its Executive Director and highest-paid employee. Krouk-Gordon has occupied these top positions since 1980, when she began TILL in a halo of high-mindedness. “TILL was founded in response to the deplorable condition into which we had let our state schools for people with mental retardation get, to the point that over 8,000 people were being warehoused in large institutions all over Massachusetts just because they were seen to be a little bit different and not fitting into society,” Krouk- Gordon intoned at the grand opening of a TILL group home in Charlestown in 2016. “De-institutionalization of state schools began in 1972,” she continued. “Together with other colleagues who felt equally horrified by the conditions to which the state schools had deteriorated, we began building a new community-based system.”
Krouk-Gordon took a hand in shaping that system. She served two terms as a Member of the Governor’s Commission on Mental Retardation, which the executive created in 1993 to monitor de-institutionalization. She served as a member of the board of the Association of Developmental Disabilities Providers and one term as President of the Provider’s Council, the human service industry’s leading professional association in Massachusetts. Boston Magazine toasted her in its 2018 gallery of “faces of women-led businesses.” She describes herself as an altruist, a force for moral improvement. “I wanted to be a part of this revolution of social change,” she said about entering human services with de-institutionalization.
Only Krouk-Gordon knows how much money her benevolence garners her. The Massachusetts Comptroller’s Office discloses the state’s payroll expenses to the public. No such mechanism reports the compensation of private contractors, even those nonprofits, like TILL, that depend entirely on state monies.
Self-reporting in tax returns on file at the charities division of the Massachusetts Attorney General’s office does afford some partial, belated information. In 2019, for example, Krouk-Gordon received $483,651 in compensation. State regulations cap the salaries of the executives of the agencies. But a loophole permits agency heads to speculate in the real estate where their publicly funded group homes operate. According to the documents on file at the Secretary of State’s office, Krouk-Gordon is a general partner in Specialty Management Services, LP, a real-estate management company. Property records at the Registry of Deeds show that company headquartered at her home in the tony suburb of Lincoln. Financial statements with the Operational Services Division say the nonprofit TILL (controlled by Krouk-Gordon) pays the for-profit Specialty Management Services (owned by Krouk-Gordon), more than $14,000 per month to lease residential properties. Her own home, in Lincoln, is assessed at $900,000.
In requesting variances and special dispensations to local zoning and planning boards for TILL’s group homes, Krouk-Gordon has claimed that more than 90 percent of her employees do not own cars but travel to work in public transportation. More detailed, company-wide information about TILL’s pay and benefits is not readily verifiable. Job postings set wages at $14.50 for entry-level work as a “Day Support Professional” in a TILL group home.
Krouk-Gordon is hostile to the prospect of collective bargaining by her employees, a common stance in the industry. Of human service workers employed by Massachusetts state government, 50 percent belong to a union. In the private agencies, among workers engaged in the same fields, the percentage drops below 10. Those employed by the state received hazard pay for pandemic work; those employed by the agencies did not.
The Service Employees International Union (SEIU) has organized approximately 6,000 private agency workers. “We’ve been doing this for 25 years,” Cliff Cohn, the chief of staff of SEIU’s Local 509, told me, “but TILL is one of the worst agencies in running anti-union campaigns.” TILL, Cohn alleged, holds captive-audience meetings telling workers how awful their work lives would become were they to attempt to form a union. TILL’s anti- worker animus is long-standing. In 1992, the Wage and Hour Division of the U.S. Department of Labor sued TILL in U.S. District Court for violating the Fair Labor Standards Act. Krouk-Gordon admitted she cheated 160 employees out of $120,000 in overtime pay.
Krouk-Gordon complains that underfunding by the state encumbers TILL. When rates increase, she pockets the extra for herself. TILL’s state funding rose by 15 percent between 2016 and 2019. Krouk-Gordon’s salary rose by 29 percent in the same period; her administrative expenses rose by 31 percent. Still, the Biden administration’s response to the pandemic has delivered a windfall to TILL. The American Rescue Plan yielded a $300,000 grant from the HHS Provider Relief Fund and another $7 million in forgivable Paycheck Protection Program loans. Time will tell where the money goes.
Or maybe not. In 2002, the Massachusetts State Independent Auditor accused TILL of improperly charging to state contracts gardening supplies, silk flowers, an $800 table, a sofa from Pier I Imports, a lease on a new Jeep Grand Cherokee, and a $25,000 check to an unidentified person. The auditors found hundreds of improprieties implicating all of TILL’s program services. They identified $1 million “in unallowable and questionable related-party relationships and transactions,” $3 million in “undocumented payroll costs,” and $300,000 in “questionable salary and vehicle expenses for TILL’s President.” They found that Krouk-Gordon had concealed the existence of private businesses that she controlled and that enjoyed contracts with TILL. In one case, they found, Krouk-Gordon used state money for a down-payment on a property purchased by a private company she controlled. “TILL’s President used funds generated from state contracts for the benefit of the President and other related-party organizations owned by the President,” the auditors charged.
Krouk-Gordon blamed glitches in TILL’s software. Pledging to provide documentation for the $4.3 million that the auditors accused her of misappropriating, she failed to do so. The auditors referred their findings to law enforcement. In 2013, another independent state audit “found problems with all $528,681 of TILL’s accounts-payable-period transactions, including inadequate documentation to substantiate that services were properly authorized, inadequate documentation to support billings, and contract funding not being used for its intended purposes.” A third, 2019 audit, by MassHealth’s Office of Long-Term Services and Supports, accused TILL’s Personal Care Management program of violating a half-dozen laws and regulations. TILL could not demonstrate that it had performed all the work for which the state had paid, according to the audit.
This pattern of unpunished financial transgressions mirrors the high volume of neglect and abuse accusations against TILL. The Disabled Persons Protection Commission received 79 allegations against TILL in the two years before the pandemic. The most numerous by far were classified as “injuries of unknown origin.” These were often discovered during a shift change or a transition between a day program and a group home. They run the gamut from lacerations, contusions, bumps, and burns to sprains, fractures, and protuberances found from head to toe. Typically, by the the time a witness noticed, the bruises were yellowed, the lacerations scabbed, the burns festered with pustules.
One woman disclosed “a large hematoma on the back of her head” and pleaded for help from her caretaker, who “screamed at her and told her to return to bed.” Hours of internal bleeding later, the wound warranted emergency treatment in a hospital. A woman with a contracture deformity grew “fearful, crying to a point of only being able to shriek” as her caregiver lifted and lowered her legs maladroitly in and out of her bed. A man finished eating Friday’s lunch and rose unsteadily from his table. Tangling his legs in his chair, he tripped and fell, pinioned to the floor. He visited the emergency room for treatment. The following Thursday, a caretaker asking him whether he planned to fall again the next day triggered a burst of ridicule. “The victim felt really bad,” the report states. “It hurt his feelings.”
A TILL staffer edged a woman’s wheelchair into a patch of grass, causing it to tip forward and propel her out. The ground broke her collarbone. A caregiver treating conjunctivitis placed a boiling hot cloth over a man’s visage, scalding his eyelids. The man “does not have feeling in his face and can’t give off any sign that his eyes are burning.” A TILL driver left an autistic woman standing alone on the porch of her group home for an hour. On March 20, 2020, a week after Governor’s Declaration of Emergency and Stay-at-Home Advisory, a nonverbal, autistic man walked through an unlocked, unsupervised front door at a TILL group home. The Lowell Police Department found him perambulating the streets and returned him to the home before anyone there knew he had gone missing.
Each of the allegations described is vitally important to the aggrieved party. Of interest from a more general standpoint is the connection between TILL’s feudal management structure and its practical impunity. Krouk-Gordon, like many executives in comparable human service positions, quadruple-dips as chief executive officer and highest-paid employee as well as president and treasurer of a small, inert, unchanging board of directors. She enjoys total personal control over a nonprofit corporation funded entirely by taxpayers yet untouched by auditors, shareholders, unions, independent directors, or regulators. She exploits the salary cap loophole for her personal benefit. Her purchasing agent and alleged regulator, the Department of Developmental Services (DDS), ignores the matter. Auditors accuse her of misappropriating $5 million and refer their findings to law enforcement. Law enforcement shrugs.
Abuse and neglect allegations pile up with no greater consequence. Massachusetts is one of a handful of states that still affords nonprofits limited immunity from civil liability, capping tort damages at $20,000. The doctrine of charitable immunity entered into law in the nineteenth century to protect private philanthropists from liability in creating their charities, not to give government-funded boondoggles like TILL a pass. But because the doctrine also protects big hospitals from medical malpractice, the statute is likely to stay in place. And this little hiding place in the law gives TILL no financial incentive to increase pay or improve staff retention—or to undertake any other measures that are known to reduce abuse and neglect. Docket reports in the Massachusetts Trial Courts show the small number of civil lawsuits filed against TILL are the prayers of pro se litigants; the claims are quickly settled or dismissed. At every point of conflict, a mechanism springs to the fore to propitiate an unaccountable executive.
A close examination of TILL’s 2019 licensure and certification report—the last before the pandemic—discloses fault lines in the state’s regulations that ensure additional injuries will occur. The report shows TILL’s group homes failing to meet the state’s threshold of compliance in half of the indicators reviewed. One of the deficient indicators, “Medication Treatment Plans,” stands out.
DDS’s inspectors found 41 percent of the Medication Treatment Plans on file in TILL’s group homes contained erroneous or insufficient information. DDS followed up and found that the percentage of deficient plans rose to 45. By this time, the Disabled Persons Protection Commission had received five allegations of harm stemming from TILL’s deficient Medication Treatment Plans. A TILL caregiver gave a client four wrong medications—and as a direct result, the person “likely faces a lengthy hospital stay.” According to another report, “The alleged victim was given incorrect medication. The medication was meant for another resident. The alleged victim’s heart rate and blood pressure were noted to be low. The alleged victim kept repeating the word ‘scared.’ The alleged victim was transported to the hospital, and a medication was provided. The first medication list had errors, and another was provided later. The alleged victim was admitted to the ICU.” According to a third report, a TILL caregiver force-fed pureed meals that contravened the client’s dietary restrictions. The client contracted aspiration pneumonia and “passed away at the hospital from an unknown cause of death.”
DDS, in other words, found that TILL did not meet the state’s requirement to maintain Medication Treatment Plans. DDS followed up and found the problem had worsened. DDS recertified TILL, in spite of reports that inaccurate MedicationTreatment Plans already had put one disabled person in the hospital for a lengthy stay, admitted another to the intensive care unit, and might have killed a third.
Maintaining accurate Medication Treatment Plans for every client could be vitally important in the event of (say) a pandemic. I asked DDS whether its agency licensure and certification process (which spotlights potential harm) includes individual allegations on file at the Disabled Persons Protection Commission (which records actual harm). “I’m not sure what you’re asking,” spokesperson Christopher Klaskin replied. “DDS licensing and certification processes apply to agency operations and site locations — not individual employees.”
There you have it. Individual injuries, assaults, and errors, no matter how predictable, numerous, or grave, are apprehended in isolation from operations. Accusations of specific abuses by individual TILL employees are never blamed on TILL’s leaders having failed to comply with general regulations. TILL sees no incentive to prevent abuse and suffers no consequence when it happens. With minor variations, the same standard passes for accountability throughout the disability provider industry in America.
Massachusetts legislators have not undertaken a comprehensive review of group homes this millennium. When last they looked, in 1997, an oversight committee bemoaned “problems of substandard care and abuse” enabled by obstructionist agencies who “used client confidentiality as a means to obscure the facts” and to hinder police inquiries. “Despite its public commitment to community placement,” the committee report observed, the privatized system “has in many cases created an artificial, contained, and isolated environment that does not include the local community.”
De-institutionalization was not a mistake, in other words, but a misnomer. Massachusetts, like other U.S. states, transferred persons with disabilities from a few large public institutions to many smaller, private ones under cover of the magic word, “community.” The asymmetry of power in the state institutions replicated itself on a smaller scale in group homes. Clients depend on the provider agencies to keep them safe, to furnish them quarters, and to learn and implement their treatment protocols. The agencies cluster them by diagnosis and regiment their social activities.
A disenchanted resident may elect to fire an agency in order to be rid of abuse — an important prerogative — but only upon the peril of not finding another place to live. In 2015, as if to illustrate this burden, the mother of a young woman with a rare genetic disorder living in one of TILL’s group homes in Danvers complained that her daughter’s residence looked grimy and smelled filthy. Her daughter, she further alleged, did not receive sufficient food and water. Krouk-Gordon retaliated by traducing the mother and barring her from visiting. The daughter, threatened with eviction, suffered a concussion and black eye.
The Better Care, Better Jobs Act may indirectly reform agencies like TILL. The act aims to improve the bargaining power of direct care workers and to create opportunities for ombudsmen to answer directly to clients and families. Additional reforms are easy to deduce. Establish a mechanism to disclose the compensation of the Dafna Krouk-Gordons of the industry. Forbid them from owning the real estate beneath their publicly funded operations. Create a metric for staff turnover and decree that an agency falling below the standard shall forfeit its contract. Introduce an exception in charitable immunity statutes everywhere they exist for nonprofits that accept Medicaid.
Such remedies are doomed to uneven enforcement. Agency leaders have learned how to stay upwind of the abuse and neglect accusations that swirl around their operations. A Massachusetts law signed last year by Governor Charlie Baker, for example, established a blacklist of workers who have been fired for abusing persons with developmental disabilities. “Dana and Nicky’s Law” intends to prevent abusers who have been fired for cause at one agency from rejoining the workforce at another one. An agency that flouts the law can face sanctions. But the law applies only to one industry in one state and adds one level of penalty to a passive investigative process preoccupied with scapegoating individual malefactors. I asked Matthew Ritter, the Legislative Director for the State Senator who sponsored the bill, about its narrow scope. “Everyone who worked on the bill agreed that this legislation alone is not enough to prevent abuse,” Ritter told me, confirming that the bill applied “solely to the individual disciplinary process.” Attempts to incorporate mechanisms to expand oversight of the agencies ran into obstruction by state legislators, Ritter added.
Nor will patching up the “innovation gap in caregiving” through the tactical placement of body sensors, video cameras, and surveillance apps outfox the underlying dilemma. As long as social relations between providers and clients take the form of a transaction, an axiom of efficiency prevails. Neglect is always cheaper than care, and cruelty is a tolerable cost of doing business. Reforms fired by the best of intentions fall under the shadow of a universal expectation that, left alone, some workers will inevitably prey on disabled persons — battering, stealing, raping, ridiculing — while most executives will inevitably exploit them both. Whence comes this grim expectation? What kind of society devalues and discounts disabled persons, as if their lives bear no intrinsic dignity?
Most Massachusetts adults in the early republic worked alongside their families. Neurologically inhibited members may not have been available for combat with the natives or expeditions surveying the continent. But contributing to a trade, household, or farm, in tune with the cadence of craft and season, fell squarely within their social compass.
Then industrialism, revolutionizing the mode of production, dis-abled them. The technique of mass production enlarged, accelerated, and reformulated the work process, excluding non-standard minds and idiosyncratic bodies from the new industrial labor market of the nineteenth century. Out went the communal relationships that had overseen economic activity. In came wages, which forced families to flee from their small farms and towns and herded them into cities and factories.
Social bonds forged between household manufacturing, agriculture, and artisanal trades had staved off spells of involuntary idleness by providing supplementary sources of family income. Now the concept of “unemployment” congealed into a social problem and manifested in the creation of the Massachusetts Bureau of Statistics of Labor, the country’s first. An invidious distinction emerged to elevate those who were able to provide for their own subsistence over those could not. A disabled member of an unemployed family cost it twice over. Idled, no longer able to contribute to the family weal, the member’s new needs added to its woe. (Readers of Franz Kafka’s “The Metamorphosis” may recognize this plot.)
The Massachusetts School for Idiotic and Feeble-Minded Youth, the first such institution in America, opened in 1851. The School disavowed any intention of becoming a custodial facility, admitting only youth — and only those whom it deemed educable. Girls received training in the domestic arts, boys in agricultural skills. The School saw its mission as returning girls and boys to their communities as more productive citizens. Today’s policy preference for home- and community-based services essentially looks back to the beginning of the story.
But a default standard of segregation — permanent incarceration — overtook the Massachusetts School amid the boom-and-bust business cycles of the industrial age. Two out of every five years between 1870 and 1921 dealt Massachusetts a recession or depression. Families, educators, and legislators appealed to the state institutions as backdoor poor relief. The Massachusetts School added its first custodial annex for “unimprovable” admissions during the long depression that followed the Panic of 1873. The institution moved its campus from South Boston to a larger facility in Waltham in 1888. There it opened an outpatient clinic where physicians evaluated legions of applicants from working-class families. The Panic of 1893 precipitated a spasm of capital flight that sent much of the state’s textile manufacturing industry southward. A four-year depression ensued, the worst in American history. Boston responded by moving its “slow” students into separate, “special education” classes. The Massachusetts School added a teacher training program to support the innovation.
Disabled persons fell in status from burden to menace as the economic exigency of segregation acquired the allure of scientific principle. In the 1880s, spores of new thinking on race, heredity, and intelligence coalesced into the eugenics movement. The theory of natural selection in Charles Darwin’s Origins of Species could not be depended on (went this thinking) and needed to be supplemented by artificial means. Preventing disabled persons from debauching the race required a vigorous program of isolating and eliminating defective genetic stock — breeding by persuasion or coercion.
Teams of psychologists and physicians formed mobile clinics, administering IQ tests to Massachusetts schoolchildren, stalking working-class families. But the movement for racial hygiene tripped over its tail. The estimated number of “defectives” appearing out of the woodwork of the rural counties surpassed the state’s capacity to quarantine them all. The flagship in Waltham enjoyed the largest acreage per inmate of any state institution in the country, yet exceeded capacity. Massachusetts added a second institution, in Wrentham in 1906, and then a third, in Belchertown in 1922, to relieve overcrowding.
The original, antebellum aspiration of community contact persisted, albeit under conditions that reflected the eugenic bewitching of the state’s institutions. Winnowing the more capable inmates from the mix, paroling them to non-mechanized farms and semi-skilled jobs like seamstress and laundress, superintendents took out genetic insurance policies in the ghastly forms of castrations, vasectomies, and tubal ligations. Other community programs hugged the margins of industrial ideology. Goodwill Industries, founded in Boston, operated a network of “sheltered workshops” that occupied inmates in scut work and paid pennies, if anything. “Vocational Rehabilitation” programs attempted to fit inmates to jobs, only to find jobs undulating with technological innovation.
Superintendents realized greater success in relocating economic productivity. Massachusetts pioneered “farm colonies.” Inmates raised dairy cattle and grew garden vegetables. A toothsome harvest could nourish an institution’s entire population of inmates, attendants, and administrative staff. Along with domestic chores and construction and repair work, farm colonies defrayed the state’s ballooning overhead costs. Confined due to their inability to advance industrial values, the unpaid labor of the inmates became too valuable to the institution’s sustenance to release.
The Great Crash of 1929 ended such ironies and indulgences. As competition for jobs grew desperate, Massachusetts probate judges acquired the power to commit children and adults involuntarily to the state institutions. The convulsions of the Great Depression and the Second World War resolved in a postwar conformity that squeezed out “defective” family members from the nuclear unit. In every one of the thirty years from 1936 to 1966, the institutional population grew. The state opened yet another facility, the Myles Standish School for the Mentally Retarded, in Taunton. Even so, overcrowding at Waltham, Wrentham, and Belchertown led officials to cram inmates into the state hospital in Monson as well.
History records some uneasiness over eugenic demagogy and observes nuance and faction within the racial purification movement. But no challenge to the state institutions has surfaced. “The only difference between Belchertown and Auschwitz is the lack of gas chambers.” That was the opinion of M. Philip Wakstein, the Western Regional Administrator of the Massachusetts Department of Mental Retardation, as told to the Springfield Union in 1970 (an indiscretion for which he was promptly reassigned). Until then, the state government’s conscripting of thousands of disabled children and adults into a lifetime of involuntary incarceration adumbrated little more than a silhouette on the public’s conscience. There were no underground railroads, no Sojourner Truths’ arising from the demimondes and arresting the public’s attention. And no wonder why. The gospel of work obliged all to be economically independent without ensuring the sufficient means to any. The invention of disabled persons by this big contradiction of industrial America consigned them to civil death.
The new middle class of the postwar period changed the dialectic of power. In 1972, Benjamin Ricci, acting on behalf of his son Bobby and 1,000 other residents of the Belchertown State School for the Feeble- Minded, filed in U.S. District Court the first class-action lawsuit by disabled persons in Massachusetts history. Ricci, a college professor, acted in his capacity as head of Belchertown’s parents’ association. More and more middle-class parents who had acceded to social pressure and placed a disabled family member in a state institution entertained second thoughts. They joined parents’ associations and challenged the longstanding reign of the superintendents, the medical profession, and the state.
Ricci’s lawsuit accused Belchertown of violating the First, Fifth, Eighth, Thirteenth, and Fourteenth Amendments to the U.S. Constitution. Joseph L. Tauro, the U.S. District Court Judge who caught the case, made an unannounced visit to the school to personally assess the allegations. He spent nine hours there in May 1973. Outside, he observed manicured lawns, a Potemkin village meant to resemble a prep school. Inside, he found conditions even worse than Ricci’s 46-page complaint alleged. Before departing that day, Judge Tauro informed the Massachusetts Assistant Attorney General accompanying him of his intention to waive trial and proceed to judgment. “I didn’t see how it would be possible at all for the Commonwealth to come up with any sort of expert opinion that would convince me that little girls are supposed to drink out of urinals, that there were supposed to be welts all over people’s bodies, that there were supposed to be feces all over the floor, that people were supposed to be unclothed, writhing around in obvious pain,” Judge Tauro said.
The parties settled six months later through a consent decree that would place Belchertown under the supervision of Judge Tauro’s federal court for two decades. The pattern swept the state. Lawsuits filed in 1974 and 1975 against the other Massachusetts state institutions settled through consent decrees consolidated under Judge Tauro.
A cluster of state and federal legislation, meanwhile, changed the fiscal calculus. In 1965, the U.S. Congress passed the Social Security Act amendments that created Medicare and Medicaid. The landmark legislation made it possible for states to receive reimbursements for the residential care of disabled persons, shifting the cost burden. Wary of Bolshevizing American families by funding them directly to take care of their dependent members, Medicaid extended reimbursements only through institutions and facilities. Massachusetts took the hint. In 1966, the state legislature passed Chapter 735, the Comprehensive Mental Health and Retardation Services Act. This law invented a regional network of state offices, created citizen review boards, encouraged community placements over state institutions, and authorized the outsourcing of the reorientation to private agencies. In 1974, the legislature passed Chapter 766, the Right to Education Act, which guaranteed a “free and appropriate public education in the least restrictive environment” to all persons aged three to 21. With government revenue guaranteed from a mix of federal, state, and local coffers, the “purchase of services” mechanism shot to the center of the new model of public-private partnership.
Still, neither litigation nor legislation by themselves brought de- institutionalization to Massachusetts. The federal government’s new grant- in-aid programs made community placements possible. Massachusetts began to receive Medicaid reimbursements in 1974. But the federal government could not have mandated the closure of state-owned institutions, which were also eligible for (and received) the reimbursements. The “least restrictive environment” doctrine acquired a Constitutional basis for recipients of funds under the Social Security Act. But courts ordered Massachusetts to meet its burden by converting the large, impersonal quarters of its state institutions into smaller, more intimate dwellings on the same grounds. The class-action lawsuits struck a blow against the institutions. But as between remediating or closing them, Tauro’s court stood neutral. Some plaintiffs embraced institutional improvements. Others urged community placements.
The state nevertheless rushed to discharge inmates. Some awoke in communities hundreds of miles away from their families. Others the state removed to nursing homes or left to fend for themselves in decrepit hotels or room-and-board houses. Nicer neighborhoods changed zoning laws. The stampede of improvisation infuriated Benjamin Ricci. “The scheme was quickly recognized as an immoral and evil dumping campaign under the banner of de-institutionalization,” Ricci wrote in his memoir, Crimes Against Humanity. Many hundreds “vanished into society to become the homeless, the prostitutes, the petty criminals, and the public nuisances.”
The preference for de-institutionalization that handed power to private agencies did not proceed from any single piece of legislation, judicial order, deadline, or signal event, yet it triumphed in Massachusetts virtually overnight. Why?
Call it political economy. Four of the five state institutions supervised by the consent decrees had been founded between 1851 and 1922. Their physical plants were outfitted with fixed thermostats, group showers, tight rows of metal-framed bunks, and tile walls that cleaned with hoses. These features, devised to generate cost efficiencies, produced the regimentation that consent decrees impelled the state to ameliorate. State revenues lagged behind expenditures as they were. The capital investments that would be required to honor the new treatment rights in the institutions threatened to bankrupt the state. As if to raise the stakes, the lawsuits coincided with a new and potentially expensive phase in labor militancy, throwing another bolt of anxiety into state managers. In 1976, following several major expansions in the bargaining power of Massachusetts state employees, more than 30,000 of them picketed their jobs in a three-day strike.
The first generation of provider agencies responded by transforming disability service into a special interest. The Massachusetts Council for Human Service Providers, an agency lobbying group founded in 1975, leveraged the class conflict to define favorable terms in state contracts. They won generous payment rates paired with remedial standards of program evaluation. The agencies connived to pay their workers less than their counterparts employed by the state and forged more flexible terms of employment, sabotaging the bargaining power of state unions. The state promptly announced its intention to fire hundreds of workers at the five institutions subjected to the consent decrees.
Ann Withorn’s The Circle Game (1982), a study of the dueling concepts of human service in Massachusetts, shows how frantic state managers went about divesting their departments of fiscal responsibility while putting a thumb on the scale for the more expedient private agency system. “Officials have been willing to parade their difficulties before the legislature and the public in order to get funds, but they always exposed problems in the institutions, not in the community facilities. Instead, the community facilities were always praised, with few of their difficulties surfacing for the press, the public, or the General Court.” As a result, Withorn concluded, “it was difficult to launch a full attack without appearing to support the large state institutions, which were universally discredited.”
A 1977 report by the Comptroller General of the United States deemed the implementation of de-institutionalization in Massachusetts chaotic. But the state pressed ahead, announcing that it aimed to achieve “full de-institutionalization” by 1980, the same year Dafna Krouk-Gordon founded TILL.
The concept of the “care economy” in disability conceals an irony so deeply buried amid the ruins of the state institutions as to be undetectable. The industrial specialization and division of labor that disenfranchised disabled persons in the first instance then redounded to confront them in the person of the paid, private technician of caregiving. The financial origins of this manifestation stirred to life with the passage of Medicare and Medicaid in 1965. By subsidizing social reproduction, a measure that was anathema to the industrial creed, Medicaid helped to de-stigmatize the distinction between productive and unproductive persons. But the course of national development disappointed the expectation of shared values and limitless economic growth that underwrote the shift from industrial to welfare capitalism. Decades of austerity exposed an underlying conflict between profit and care in “human infrastructure.”
Today, a growing federal policy preference for direct spending (child tax credits, stimulus payments) over indirect investment in institutional incentives is taking root alongside a ferment of big ideas (universal basic income, single-payer health care, the four-day work week). The resulting federal legislation might augur another shift in social structure, this time to a post-capitalism whose signal feature is reducing the share of life that is subject to economic struggle. The Biden administration appears to be gouging out a new conceptual framework with progressive Democrats in Congress. For now, though, it is difficult to see how the “care economy” in disability will not remain hostage to the corruption endemic to the political economy that succeeded the state institutions.
To endow disabled adults with a greater degree of personal security, we need to rehabilitate the desiccated communities where we encourage them to reside. The best bulwark against abuse is a strengthened social bond, forged between the spheres of economy and government.
An ethic of care, Jane Addams wrote at the height of the industrial age, rests on neither pity nor profit, but “subjective necessity.” Caring for others ought to be a practice in reciprocity, a gift to oneself. “Nothing so deadens the sympathies and shrivels the power of enjoyment as the persistent keeping away from the great opportunities for helpfulness and a continual ignoring of the starvation struggle which makes up the life of at least half the race,” Addams wrote. “To shut one’s self away from that half of the race life is to shut one’s self away from the most vital part of it; it is to live out but half the humanity which we have been born heir to and to use but half our faculties.” The yearning for “a higher civic life” gives “tangible expression to the democratic ideal.” Just so.