This year marks the 25th anniversary of the closing of Pineland Center. Since the Maine Legislature appropriated funds for the earliest iteration of the institution, the purpose, effect, and philosophy of Pineland changed in response to societal whims and social reforms. Reform movements, often marked by a name change or a new building, failed in their attempts to produce an institution free from abuse and neglect. Similarly, the rights of individuals receiving developmental services changed during the course of the Pineland consent decree; the rights to humane treatment and freedom from abuse and neglect existed in stark contrast to the shifting definitions of permissible and impermissible forms of restraint.[1] Effective change required deinstitutionalization and the prioritization of the voices of self-advocates—the former and then-current residents of Pineland. Self-advocates and their allies struggled to end “the routine use of all forms of restraint”[2] but succeeded in closing Pineland for good in 1996. Regardless, the systematic use of restraints continued despite the closing of Pineland.
For much of Pineland’s history, widespread belief in eugenics and the restrictive physical settings of these institutions kept the public at bay, either by fear or by force.[3] Reform movements of the 1960s sought to erase the Pownal State School’s “custodial and punitive past…with its corrosive and destructive impact on the minds and personalities of the patients”[4] when they rebranded it as the Pineland Hospital and Training Center. Throughout the following decades, a landmark class action lawsuit brought to light the rampant violence, isolation, and demoralizing living conditions experienced by the thousands of persons who were and had been institutionalized at Pineland. Pineland was found to have used restraints “as punishment, for the convenience of staff, [and] as a substitute for programs.”[5] However, litigation alone did not effect systemic change; federal legislation, national news coverage, and, most importantly, activism by advocates for and survivors of Pineland sought an end to institutionalization.
Today, Maine law continues to allow for the planned restrictions of the rights of individuals with intellectual and developmental disabilities,[6] including non-emergency restraint.[7] Interventions such as restraint are often applied to people with intellectual and developmental disabilities in crisis. Such interventions are at best ethically gray; the evidence of physical and psychological harm resulting from such restrictive interventions is well documented[8] and runs counter to public policy.[9] There are more humane and less restrictive alternatives to restraint.[10]
Just as the closing of Pineland forced the creation of services capable of supporting autonomy and community engagement, the abolition of laws and regulations that allow for the planned use of restraints and similar violations of the rights of individuals with intellectual and developmental disabilities is necessary to end the cyclical, systemic traumas suffered by those who witness, carry out, and suffer from the planned use of restraints.[11] Research suggests “inadequate community capacity to provide necessary intervention for situation in which an individual is experiencing a behavioral crisis.”[12] Increasing funding and access to communication supports, behavioral therapy, crisis services, and experienced, well-supported staff capable of providing those services in a trauma-informed manner can help ensure the treatment needs of individuals subjected to restraints are met.[13] Persons receiving trauma-informed care[14] are subjected to far fewer restraints than their counterparts;[15] the benefits of trauma-informed care are exponential.[16] Recipients of developmental services in Maine have a right to receive trauma-informed care;[17] direct support professionals deserve the opportunity and support to provide it.[18] Ultimately, the rights of recipients of developmental services in Maine—the rights to dignity, privacy, appropriate medical care, human treatment, freedom from discipline and abuse, and access to truly positive supports, among others—will never be fully realized unless Maine abolishes the use of non-emergency restraints.
Beginning March 1, 2021, Maine’s Department of Health and Human Services, Office of Aging and Disability Services is hosting a series of three listening sessions concerning Regulations Governing Behavioral Support, Modification and Management for People with Intellectual Disabilities or Autism (14-197 C.M.R. Ch. 5). The Office of Aging and Disability Services (OADS) is encouraging individuals receiving developmental services in Maine, their families and guardians to attend these listening sessions. The listening sessions are open to the public, anyone is welcome to attend; more information, including instructions on how to register for the listening sessions, may be found here. Disability Rights Maine looks forward to attending these listening sessions with self-advocates and encourages others directly or indirectly affected by the aforementioned behavior management regulations to attend or submit feedback to OADS in advance.
[1] Compare 34-B M.R.S. § 5605 historical and statutory notes (noting P.L. 1993, ch. 326, § 9, deleted a provision “which allowed for discipline by placement of a resident alone in a locked room for less than an hour” and P.L. 2007, ch. 573, § 1, repealed 34-B M.R.S.A. § 5605(14), which read, in part: “Physical restraints. Persons with mental retardation or autism are entitled to be free from physical restraints, which include totally enclosed cribs and barred enclosures, but physical restraints may be employed only in emergencies to protect the person from imminent injury to that person or others. … B. Physical restraints may impose only the least possible restrictions consistent with their purpose and must be removed when the emergency ends. … D-1. A device whose effect is to reduce or inhibit a person’s movement in any way but whose purpose is to maintain or ensure the safety of the person is not considered behavioral treatment”), with 34-B M.R.S. §§ 5605(12)(B)-(C) (2020) (stating “[c]orporal punishment or any form of inhuman discipline is not permitted. … Seclusion as a form of discipline is not permitted”), and 34-B M.R.S. §§ 5605(14-A)(A)-(B) (2020) (stating “[a] person with an intellectual disability or autism is entitled to be free from restraint unless the restraint is a short-term step to protect the person from imminent injury to that person or others; or the restraint has been approved as a behavior management program in accordance with this section).
[2] Consent Judgment, Appendix A at 32, Wuori v. Zitnay, No. 75-80-SD (D. Me. July 14, 1978).
[3] See Stephen T. Murphy, Voices of Pineland, 139-41 (2011) (“[Residents were] widely considered to be socially deviant…. Residents … remained incarcerated, not only because they were needed to run the facility efficiently and cheaply, but also because their presence prevented the facility from being identified as a strictly custodial institution for only the most chronic cases.”).
[4] John Hoffman, An Investigation of Factors Contributing to Successful and Non-successful Adjustment of Discharged Retardates, Pownal, ME: Pineland Hospital and Training Center, 1969 (ERIC Doc. Reproduction Service No. ED 043 152).
[5] Report of the Special Master at 67, Wuori v. Zitnay, No. 75-80-SD (D. Me. Nov. 14, 1979).
[6] 34-B M.R.S. § 5605(13)-(14-A) (2020); 14-197 C.M.R. ch. 5 (2020).
[7] E.g., 14-197 C.M.R. ch. 5, § 5.02-43 (2020) (defining Restraint as “a mechanism or action that limits or controls a Person’s voluntary movement against his or her will. Restraint deprives a Person of the use of all or part of the Person’s body, or maintains a Person in an area through physical presence, physical limitation or Coercion. Restraint includes Blocking, as well as the Coercive movement of a Person to a place where the Person does not wish to go. Restraint also includes any inaction that limits or controls a Person’s voluntary movement, such as refusing to give support to meet a Person’s mobility needs. Some Restraints are Prohibited Practices”); 14-197 C.M.R. ch. 5, § 5.02-1(A) (defining Behavior Management Plan as “a written plan that described all planned interventions which include restrictions of Rights or the use of Restraint”); 14-197 C.M.R. ch. 5, § 5.05-1(A) (instructing Planning Teams to Act “[w]hen a person is subject to a court order or conditions of probation and the Planning Team decides that the Service Provider will need to use interventions that restrict the Person’s rights in order to enforce those orders or conditions a Behavior Management Plan must be developed that is consistent with the court order”); see also 14-197 C.M.R. ch. 5, §§ 5.02, 5.08 (2020) (defining “emergency” as “a situation in which there is Imminent Risk of harm or danger to the Person or community. Risk of criminal detention or arrest constitutes an Emergency,” and further stating that “[e]mergencies occur when a Person’s Challenging Behavior presents an Imminent Risk to the health and/or safety of the Person or the community).
[8] See Carl Friedman & Caitlin Crabb, Restraint, restrictive intervention, and seclusion of people with intellectual and developmental disabilities, 56 Intell. & Dev. Disabilities 171 (2018).
[9] See Caderyn J. Gaskin, et al., Initiatives to reduce the use of seclusion and restraints on people with developmental disabilities: a systematic review and quantitative synthesis, 34 Res. Dev. Disabilities 3946 (2013) (noting how “healthcare practices often diverge from policy objectives [when] restraints [are] routinely used with people who have developmental disabilities” in many Western countries, including the US)
[10] E.g., Wilfred Beaudoin & Adam Moore, Living Without Restraint: One Parent’s Reflections and Recommendations for Supporting At-Risk Individuals With Developmental Disabilities, 56 Intell. & Dev. Disabilities 155 (2018) (describing proactive strategies for reducing the use of emergency restraints, crisis de-escalation strategies, and post-crisis strategies that allowed one man with intellectual and developmental disabilities); Carl Friedman & Caitlin Crabb, Restraint, restrictive intervention, and seclusion of people with intellectual and developmental disabilities, 56 Intell. & Dev. Disabilities 171 (2018).
[11] See Carl Friedman & Caitlin Crabb, Restraint, restrictive intervention, and seclusion of people with intellectual and developmental disabilities, 56 Intell. & Dev. Disabilities 171 (2018) (concluding that research, based on a review of states’ HCBS 1915(c) waivers, suggests a correlation “between a waiver’s allocation of behavioral therapy and/or crisis services, and their [authorization and] use of restraint, restrictive interventions, or seclusion”)
[12] Friedman et al., Mental/behavioral health services: Medicaid Home and Community-Based Services 1915(c) waiver allocation for people with intellectual and developmental disabilities, 53 Intell. & Dev. Disabilities 257, 258 (2018).
[13] See Julia Merineau-Cote & Diane Morin, Correlates of restraint and seclusion for adults with intellectual disabilities in community services, 57 J. Intell. Disability Res. 182 (2013) (detailing a Canadian study of persons with intellectual and developmental disabilities that found individuals who were prescribed anti-anxiety medications, were non-traditional communicators, had undergone a functional assessment concerning aggressive behavior, and/or were supported by direct support professionals with limited experience were more likely to be subjected to restraint than other similarly-situated peers); see also Gregory Hanley, Functional Assessment of Problem Behavior: Dispelling Myths, Overcoming Implementation Obstacles and Developing New Lore, 5 Behav. Analysis Prac. 54, 54-72 (2012) (noting that “hundreds of studies have shown the efficacy of treatments for problem behavior based on an understanding of its function,” yet there is widespread disagreement, misunderstanding, and misapplication regarding the functional assessment process).
[14] Trauma-informed care “is a systemwide approach that emphasizes organizational practices based upon principles of safety, choice, collaboration, empowerment, and trustworthiness.” John Keesler, From the DSP Perspective: Exploring the Use of Practices That Align With Trauma-Informed Care in Organizations Serving People With Intellectual and Developmental Disabilities, 58 J. Intell. Disability Res. 208 (2020).
[15] E.g., Nirbhay Singh et al., Caregiver training in mindfulness-based positive behavior supports: Effects on caregivers and adults with intellectual and developmental disabilities, 7 Frontiers Psychol. 1 (2016) (showing how well trained and well supported direct support professionals, who have been taught self-care, utilize restrictive interventions less often than similarly-situated staff); Nirbhay Singh et al., Mindful staff can reduce the use of physical restraints when providing care to individuals with intellectual disabilities, 22 J. Applied Res. Intell. Disabilities 194 (2009).
[16] See Keesler, supra note 14, at 215-220 (noting how providers who utilize trauma-informed practices with direct support professionals see less staff turnover, less use of restrictive interventions, and more consistent support given to individuals person-centered planning goals and related activities).
[17] 34-B M.R.S. §§ 5605(1), (8), (13)-(14-A) (2020).
[18] One study found that over 75% of direct support professionals have suffered at least one adverse childhood experience and 30% have experienced more than three. John Keesler, Adverse Childhood Experiences Among Direct Support Professionals, 56 J. Intell. Disability Res. 119 (2018).