Positive Behavior Supports
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White Papers

The Family Alliance to Stop Abuse and Neglect
"White Paper" on Matthew’s Law and recent misinformation

New Jersey needs to solve the problem of restraint deaths and injuries in its facilities for people with disabilities by endorsing the standard set by other states and by the Federal government: limiting restraint use to emergencies only. A few service providers, represented by their state provider organization, continue to insist that they should be allowed to use restraints and other aversive punishers as legitimate therapeutic "treatments" for disability. Their arguments amount to ridiculous misinformation: that banning "therapeutic" restraint use would result in banning car seats and surgery; that responding to people with disabilities in a positive way is bad for them and a threat to civil society; and that people being restrained and punished can simultaneously enjoy an increasingly high quality of life. The fact that such frivolous claims are being made demonstrates conclusively that no plausible arguments for the therapeutic use of restraints and aversives exist.

With the unanimous passage of Danielle’s Law on the final day of June, the New Jersey legislature sent the unequivocal message that it is tired of seeing people with disabilities die due to inadequate medical treatment. A concurrent legislative Resolution thanking the parents and families who continue to advocate for reform gave hope that legislators are also tired of seeing people with disabilities killed, injured, and traumatized due to dangerous restraints and aversives masquerading as "treatment." "Matthew’s Law limiting the use of restraints" will be taken up again when New Jersey lawmakers return to Trenton in the Fall. We family members have worked hard and done our homework to provide our elected officials with clear and honest information. We applaud the legislature for its diligence in exploring this dangerous problem.

As Matthew’s Law gains momentum, however, a few service providers are making a noisy search for something to throw in its path. The sound produced is clearly that of the bottom of the barrel being scraped. Three red herrings, in the form of three documents circulated to legislators, have so far emerged from this location. The purpose of this Family Alliance "White Paper" is to clean up and dispose of this baseless fearmongering, much of which would be laughable if it did not have the potential to harm vulnerable children and adults.

The first document is "How Can You Legislate Against Aversives or Restraints?’ by Dr. David L. Holmes of The Eden Family of Services. Holmes, whose doctorate is in education, attempts to confuse low-level readers by giving "restraint" its broadest possible dictionary meaning instead of the precise technical meaning fixed in human services regulations and laws nationwide. Working from his own generic definition, Holmes then complains that Matthew’s Law would make infant seats and seat belts in automobiles illegal. This would indeed be unacceptable if true, but the safety belts and seats mandated to prevent injury in case of collision (while allowing passengers all needed mobility to drive, eat, read, harass their siblings and talk on their ubiquitous cell phones) are in a different class from those mechanical "restrictive devices" used to immobilize the limbs and stop the activity of people with disabilities. Ironically, when 14-year old Matthew Goodman of Matthew’s Law was transported to the emergency room in the final hours of his 16 months of mechanical and chemical restraint, he arrived not in a seat belt or safety seat -- as his precipitous weight drop from 100 to 70 pounds would have required under New Jersey’s car seat law -- but with his arms still immobilized in straps and his head immobilized in a large helmet. That prevention of the normal movements necessary to everyday life is what is meant by mechanical restraint. As Matthew’s mother later put it, "They told me the restraints were habilitative. Habilitation means ‘learning new skills.’ How could he learn new skills when he couldn’t even move?"

Chemical restraint also has a specific meaning in the field of disabilities services. It refers to the prevention of movement and activity via medication (sedation) that makes it difficult for the person to think clearly or to control his/her muscles. It does not refer to those medications needed to actively treat an illness or improve a disabling condition. The third form of restraint, called manual or physical, includes grabbing, holding, pulling to the floor, and immobilizing a person with one’s own body weight. It may take several people to carry out a physical restraint, and many of the blocks, trips, and holds used bear more than a passing similarity to martial arts techniques.

Nowadays people in the disabilities field recognize that restraints are inherently dangerous and demeaning, preventing rather than supporting the learning of new skills. If restraints teach anything to a person with a disability the message is a negative one about the acceptability of physical force and coercion (i.e. "might makes right"). Many people subjected to restraint have died, been seriously injured, or developed Post-Traumatic Stress Disorder. That is why Matthew’s Law, which is based on humane and successful laws and regulations from across the country, would limit mechanical, chemical and manual restraints to safety emergencies only, when (for example) a quick grab may prevent someone from stepping into the path of a car.

Restraint may also be needed during a medical emergency. Holmes’ disingenuous complaint to the contrary, Matthew’s Law does not mandate that we can only "have little talks" with the confused patient who is pulling out his IV. In fact, hospitals are already covered by statutes and regulations permitting emergency restraint in such situations, with very close medical supervision. Matthew’s Law would bring medical oversight to the emergency use of restraints in (non-hospital) residential facilities for people with disabilities, a level of care which is absent when restraint is routinely used as part of a person’s everyday "treatment."

Matthew’s Law would ban "aversives," by which is meant those corporal punishments and inflictions of harm for which a public school teacher could be fired or a parent come under the scrutiny of law enforcement and DYFS. They include, according to a helpful list in Holmes’ book Autism Through the Lifespan (1997), slapping, pulling hair, blindfolding, water squirts in the face, forced inhalation of ammonia, noxious oral stimulus, and restraints of many varieties. Reaching past his own list for the oldest chestnut on the tree, Holmes chooses life-saving surgery as his ultimate example of an "aversive procedure" and warns that it would be prohibited by Matthew’s Law. In fact, surgery is the classic example of the legitimate emergency that provides an ethical rationale for subjecting another human being to an intrusive and risky procedure. If surgery could be considered an aversive punisher we would currently find it included in the behavior support plans of people with disabilities in New Jersey, where it would then be performed on the same individual over and over, on a routine rather basis and often with increasing degrees of intensity, in hopes of effecting an improvement. The experience of Michael Jackson convinces us that this cannot be.

Having vented his fears about the impending loss of car seats and surgery, Holmes’ language becomes Biblical in his depiction of the Armageddon he anticipates if the powers of children with disabilities can no longer be leashed through aversives and restraints: "chaos will reign, service providers will be incapable of serving, educators will be incapable of educating, and families will be held hostage in their own homes. Neglect and abuse will rule the day...." Apparently this chaos will spread beyond disabilities services and "unlawful behavior" will multiply until "we would not have an orderly society, and it would be unsafe for all of us to leave our homes." Soon everyone would be speeding in their cars, and "it would be unsafe to drive on America’s highways."

Holmes’ theory to the contrary, most of us have assumed that these problems were caused by rock music and video games. Empirical studies of the many states that have legislated and regulated against restraints and aversives has shown that the breakdown of civilization is no further advanced within their borders than in New Jersey. In fact, in New Jersey civilization -- as measured by the humane assurance that people with disabilities will be allowed to live and receive services in their own communities rather than shipped off to institutions -- is only one step from rock bottom (Alabama). Civilization does not look kindly on people being pulled to the ground in a basket-hold restraint or slapped, pinched, squirted or otherwise treated with aversives, and should this occur in public places onlookers tend to call the police. Hence the targets of these punishments must be hidden away from public view, as a disproportionate number of New Jersey’s children and adults with disabilities are today. In Biblical terms, this is no Eden.

Even odder than Holmes’ lament for civilization is the article circulated with it: "Negative Effects of Positive Reinforcement" (Perone, 2003). Its author, Michael Perone, teaches at West Virginia University. This article is a "think piece," which means that the author is trying to find applications for societal problems in experiments he has read about or done. Apparently most of the experiments Perone is thinking about involve frogs, rats, and pigeons.

Just as Holmes stretches the term "restraints" until it snaps, Perone would rid us of the pesky problem of aversives simply by broadening the term until it becomes unrecognizable. Any unwanted consequence of a behavior is an aversive, he asserts: "(Aversive control) leads us to come in out of the rain, to blow on our hot coffee before we drink it, and to keep our fingers out of electric outlets" (p. 1). Now these are reasonable things to know, and more or less impossible to prevent most people from learning. What Perone carefully fudges is the fact that deliberately and repeatedly squirting someone in the face to control their behavior has nothing in common with the natural experience of strolling in the rain, nor is punishment via the forced ingestion or inhaling of noxious substances akin to discovering how to be careful with hot coffee, nor is an accidental household electric shock to be compared with forcing a child with disabilities to endure the repeated activations of a remote-controlled electroshock device strapped to his skin.

But Perone is not content merely to obscure these fundamental distinctions; surprisingly, he reveals himself as a moral reformer of the fire and brimstone variety. He wishes to convince us that negative consequences to our actions are not just inevitable but inevitably good, and that this is so because positive consequences are in fact negative. It is fun to make up your own definitions. As Lewis Carroll’s Humpty Dumpty said, "When I use a word, it means exactly what I want it to mean -- no more and no less." Perone declares that anything that effectively reduces a behavior is punishment, "And, by definition, the more effective it is, the more aversive it is" (p. 4). So to help change people’s behavior by so-called positive approaches of rewarding, praising, redirecting, prompting, calming, and engaging their natural interests is in fact aversive. We know this, according to Perone, because these "positive contingencies...do not generate avoidance, escape, and their emotional counterparts" -- a lack which Perone judges "detrimental" (p. 6). People will get soft, they will lose their edge. Once they get used to being motivated by things they actually like rather than by the need to escape and avoid, Perone declares, people will easily be "exploited by governments, employers, gambling casinos, pornographers, drug dealers, and pimps" (p. 6). Perhaps the entire population of New Jersey’s developmental centers will relocate to Atlantic City. It would be an interesting consequence of Matthew’s Law, and a significant boost to the state’s economy.

The final document from the bottom of the barrel is the COSAC Position Statement "On the Use of Restrictive Procedures in Behavior Support Plans" and the accompanying "Essential Elements of Comprehensive Behavior Support Plans That Include a Restrictive Procedure." COSAC, like Holmes and Perone, performs sleight of hand with language: into the Position Statement hat go those clunky aversives and restraints and -- voila -- out comes something gauzy and ethereal called "restrictive procedures." Wave it in front of a program director and -- presto, chango -- restraints and aversives are back again, right in the behavior support plan.

But wait, there’s more: a list of 22 "Essential Elements" (imported from The Australian Psychological Society) to make the routine use of aversives and restraints a sensitive and alluring experience. As with any good magic act, COSAC realizes that it is vital to use the right words and formulas, keeping the eye focused away from what is actually happening. The 22 "Essential Elements" state that "restrictive procedures" (aversives and restraints) should only be used when "basic needs" such as "positive social interaction," "preferred leisure activities," and "opportunities to be a valued and productive member of society" are "met on a continuous basis" and the plan is "designed to increase adaptive behavior, independence, and participation in meaningful relationships and activities." Yet behind this smoke and mirrors the backstage mechanics of immobilization and devaluation by means of restraints and aversives grinds away as usual. Close your eyes and try to picture a valued, productive member of society happily enjoying his favorite activity in the company of people whose meaningful relationship involves immobilizing him on the ground, blindfolding him, and applying noxious oral stimuli and ammonia inhalants. Even were we capable of engaging that willing suspension of disbelief required by all magic acts, this one would collapse on the basis of sheer improbability.

COSAC’s "Essential Elements" tease the audience with the claim that the "individual, parent, or legal guardian" must provide "informed consent" to the use of aversives and restraints, a gesture we easily recognize as illusory when the private facilities COSAC represents have the right to cancel an individual’s placement for withholding this consent. COSAC solemnly suggests that the program clinician should explain the "restrictive procedures" in a "culturally sensitive manner," yet discovering that your mugger is bilingual does not of itself make for a positive experience. COSAC advises that the individual selected to participate in "restrictive procedures" should have "no known physical or medical conditions that would contraindicate the procedure," yet many restraints deaths occur from asphyxiation, bones are broken without prior medical warning, and acute psychological trauma is an equal opportunity destroyer.

Other COSAC magic tricks involve the use of distorted perspectives to create an illusory point of view. For example, we are told that while restraints and aversives are being implemented "A functional assessment (must be) conducted and documented to determine the environmental and/or biological factors that maintain the behavior." Blink twice, look harder, and you can see that this is hardly possible when the behaviors are being maintained and exacerbated by the restraints and aversives themselves. Similarly, we are directed to focus on the prospect that the restraint or aversive "intervention" chosen actually "Teaches the individual more adaptive, functionally-equivalent behaviors." Central to all magic acts is the willingness to believe that something of value can arise from nothing; this would be the case if new adaptive behaviors could arise from immobilization. Finally and most audaciously, COSAC calls on programs to open the magic box and verify that the restraint or aversive punisher they favor "has empirical support from well-designed research studies." In fact, if honesty reigned that final trick would bring down the house, for reputable examinations and meta-analyses of data on restraints and aversives offer no support for their safety or efficacy.

What we do see emerging from COSAC’s labored and contorted apologia for restraints and aversives is a tacit agreement with the Family Alliance that these are dangerous procedures indeed, and that their continued use is causing no end of time and trouble to justify. No one really imagines that, once spraying, slapping, or take-down holds are written into a person’s routine habilitation plan, a staff person is going to work through COSAC’s suggested list of 22 "Essential Elements" each time they feel their client needs a little more improvement. Only when aversives go the way of the outmoded lobotomy, and restraint use is reserved for and treated as a dangerous emergency, will we finally be in a position to stop making excuses and start making life better for our citizens with disabilities..

The opponents of Matthew’s Law have taken their final shot. They have wheeled up the cannon and lit the fuse, producing much noise. What has emerged from the barrel is a ball of cotton candy. The fact that such frivolous claims are being put forth demonstrates that there exist no reasonable arguments for the continued "therapeutic" use of restraints or other aversives. Matthew’s Law offers a proven successful answer to the ongoing tragedy of deaths, injuries, and trauma caused by their use, and the Family Alliance sincerely urges that New Jersey accept this opportunity to follow in the footsteps of other enlightened states and service providers.
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REFERENCES

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Carr, E.G., Horner, R.H., Turnbull, A.P., Marquis, J.E., Magito McLaughlin, D., McAtee, M.L., Smith, C.S., Anderson Ryan, K., Ruef, M.B., and Doolabh, A. (1999). Positive behavior support in people with developmental disabilities: A research synthesis. [Monograph]. Washington, D.C.: American Association on Mental Retardation.

Carr, E.G., Levin, L., McConnachie, G., Carlson, J.I., Kemp, D.C., and Smith, C.E. (1994). Communication Based Intervention for Problem Behavior: A user’s guide for producing positive change. Baltimore: Brookes.

Donnellan, A.M, LaVigna, G.W., Negri-Shoultz, N. and Fassbender, L. (1988). Progress Without Punishment. New York: Teachers College Press.

Donnellan, A.M and Leary, M.R. (1995). Movement Differences and Diversity in Autism/Mental Retardation: Appreciating and Accommodating People with Communication and Behavior Challenges. Madison: DRI Press.

Durand, V.M. (1990). The aversives debate is over: And now the work begins. Journal of the Association for Persons with Severe Handicaps, 15, 140-141.

Fisher, W.A. (1994). Restraint and seclusion: A review of the literature. American Journal of Psychiatry 151, 1584-1591.

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Interdisciplinary Council on Developmental And Learning Disorders. (2000). Clinical Practice Guidelines: Overview and Recommendations. Bethesda, MD: Author.

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Singh, N.N., Singh, S.D., Davis, C.M., Latham, L.L., Ayers, J.G. (1999). Reconsidering the use of seclusion and restraints in inpatient child and adult psychiatry. Journal of Child and Family Studies, 8, 243-53.

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Among the national organizations which have taken positions against the use of non-emergency restraints are:

• The Federation of Families for Children’s Mental Health
• The Arc of the United States (formerly the Association for Retarded Citizens)
• The American Academy of Child and Adolescent Psychiatry
• TASH (formerly The Association for Persons with Severe Handicaps)
• The National Association of State Mental Health Program Directors
• NAMI (National Alliance for the Mentally Ill)
• The Autism National Committee
• The American Association of Psychiatric Nurses
• The Bazelon Center for Mental Health Law

• New Jersey SPAN (Statewide Parent Advocacy Network)
• Protection and Advocacy of New Jersey
• The Boggs Center of the Robert Woods Johnson School of Medicine
• Cerebral Palsy of New Jersey
• New Jersey TASH
• Community Options
• The Family Alliance to Stop Abuse and Neglect