11/12/2013 03:28 pm ET Updated Jan 23, 2014

Disability and the Invisible American 'Gulag Archipelago'

The escape, earlier this year, of three women from a home in Cleveland where they were held captive for roughly a decade elicited intense interest here and around the world. This example of imprisonment is undoubtedly regarded by most as a bizarre and rare case, nothing like the system of prison camps described in Aleksandr Solzhenitsyn's 1997 book, The Gulag Archipelago, an in-depth account of the system of Soviet internment camps where "inconvenient" citizens were imprisoned, brutalized, and forced to serve as menial laborers, often until death.

Somewhat contrary to this belief, there is a vast, largely decentralized, and mostly hidden world probably reaching into every state in the union in which individuals with disabilities, whether acquired at birth or through disease, accident, or aging are housed in homes, apartments, or institutions and potentially receive treatment in some ways like that of a prisoner even if less brutal than occurred in the Soviet gulag. I do not mean to imply that every such residential setting is characterized by mistreatment, neglect, or exploitation, but many are in varying degrees.

Frankly, the preceding should come as no surprise. The individuals in group homes, government institutions, and various other residential facilities are there specifically because of one or more disabilities, which can be physical, cognitive, or both. While there is enormous variation in cognitive (and other) attributes in this population, many of these individuals are at significantly increased risk for exploitation or mistreatment. Examples include misappropriation of their financial resources, physical and/or psychological abuse, delayed or denied medical care, indifference to their needs and desires for social or recreational activities, and denial of access to family and friends.

Anyone who believes that the forms of mistreatment recited above are necessarily rare and that adequate oversight would surely prevent more frequent abuses should reconsider. Individuals requiring care, supervision, or even occasional supervision almost always involve numerous providers to cover different daily shifts and weekends as well as weekdays. It only takes one provider with inappropriate motivations to cause substantial harm to a client. Even if most of the providers have good intentions, their actions will not generally nullify the damage that can be caused by just one abusive, exploitative, or neglectful individual. The low wages and minimal training that are often associated with provider positions increase the likelihood that some of these individuals will be inadequately prepared for an often challenging mission.

Furthermore, supervisors may be on site rarely or never. These nominally more responsible individuals may be concerned about intense financial pressures and may receive explicit instructions from superiors to minimize costs. They may also expect that bringing problematic actions of subordinate employees to the attention of superiors will not be welcomed.

These claims are supported by conversations with many young adults affected by disabilities or their parents. A few examples may suffice to illustrate the types of mistreatment that are frequently encountered.

• A friend's young adult daughter failed to obtain timely and appropriate medical care while a ward of a corporate guardian so that she suffered hearing loss and lung damage. Thankfully, sustained and intense effort by the mother resulted in the daughter's liberation from this horrendous situation.

• An individual we know allowed her adult son to become a ward of a corporate guardian when she was overwhelmed by a recent death in her family in addition to other family members requiring substantial direct care. She was subsequently prevented from visiting her son and was denied access even when he was in the hospital, where the son ultimately died.

• Individuals in group homes or nominally-supervised apartments complain of frequently being unable to attend social or recreational events of their choosing.

• Therapeutic sessions in some facilities may occur with a frequency unlikely to have any beneficial effect. Billing is often the most efficient process at such facilities.

A fair question is, "How do adults with disabilities end up in these situations?" The answer often revolves around the operations of probate courts. This issue deserves a thorough treatment demanding more space than is available here, but I want to emphasize a key weakness of this aspect of the legal system. Cases of individuals with developmental disabilities frequently involve numerous medical and neuropsychiatric issues. The judges, magistrates, attorneys, and guardians ad litem that dominate the proceedings generally lack medical or scientific training, may have had minimal to no contact with the individual whose fate is being decided, and are frequently seriously lacking in the insights necessary for arriving at a just decision that advances the interests of the ward. This system is in desperate need of major redesign.