Throughout the previous century, clinicians who have conducted psychotherapy for individuals with mental retardation have lamented over the lack of attention traditionally given to this field. As early as 1936, Chidester and Menninger stated, “Mental retardation has long been looked upon as an organic condition therapeutically hopeless” (p. 616). By the early 1950s, however, there seems to have been a growing body of work demonstrating positive results in this area. These results may have been partly due to a shift in focus with regard to the goals of psychotherapy. As Neham (1951) noted in a review, therapeutic goals had shifted from trying to cure mental retardation to helping individuals cope with their inherent limitations and frustrations. Clinicians continued to provide psychotherapy for individuals with mental retardation from the 1950s to the 1980s. However, the amount of material being published by researchers in this field was scant, and mental health clinicians, by and large, continued to neglect this area of practice. In 1982, Reiss, Levitan, and McNally stated that “Mentally retarded people may constitute one of the most underserved populations in the United States” (p. 361). These authors went on to make the case that psychotherapeutic services for individuals with mental retardation need to be made more available, especially in light of the deinstitutionalization movement.
Although still underserved, the situation has improved since the 1980s. The literature base has grown significantly during the past 20 years. First, articles on the topic have been published in journals both within and beyond the field of developmental disabilities, and a growing number of books focused on this topic are a healthy sign of the field's development (e.g., Blotzer & Ruth, 1995; Fletcher, 2000; Sinason, 1992). Second, workshops, seminars, and other types of trainings are more readily available. The growth of NADD, an association for persons with developmental disabilities and mental health needs, has been particularly instrumental in this regard. Third, there has been a growth in mental health programs in general for persons with mental retardation. In addition to the provision of direct services, some program administrators seek to foster links and collaboration between mental health providers and agencies that serve individuals with mental retardation (e.g., Beasley, Kroll, & Sovner, 1992; Carlsson, 2000).
An overview on psychotherapy as applied to persons with mental retardation has not been addressed in this journal since 1984 (Matson). An updated overview is warranted to incorporate some of the developments that have occurred in the field since that time. The following article is intended to cover some of the more salient concepts and practices in this area, including referral, theoretical, conceptual, and ethical issues as well as current concerns.
As with the population at large, persons with mental retardation are referred for and seek out psychotherapy for a wide variety of reasons. Data are lacking regarding the specific number and type of referrals psychotherapists treat. However, demographic trends and changes within the field of mental retardation have broadened the range of problem areas that psychotherapy can address, including addressing aging-related needs, assisting with transition to community living, addressing increased exposure to the “freedoms and dangers of society,” and treating individuals with severe or profound mental retardation.
Demographic changes and increased longevity have contributed to a larger number of individuals with mental retardation who have aging-related needs. These trends have placed a strain on many service delivery systems (Braddock, 1999). An aging population has several implications for the field of psychotherapy. There are a variety of issues that many individuals, including those with mental retardation, have to cope with as they age. Retirement, changing roles in society, bereavement (Good & Lynch, 1999; Hollins, 1995; Luchterhand & Murphy, 1998), vulnerability to mental illness (Menolascino & Fleisher, 1993), and loss of physical/sensory abilities are some issues that psychotherapists may help to address.
The movement of persons with mental retardation from large state facilities to community placements is a trend that began around 1960 and is ongoing (Lakin, Prouty, Polister, & Anderson, 2000). Such a move is a substantial transition that often requires a person to adjust to many changes simultaneously, which can be stressful for someone who is unprepared to cope with the challenges of community living (Reiss et al., 1982). Even within community settings, persons with mental retardation often have to adapt to new situations and role expectations due to increased efforts at community integration. Although integration is a highly valued principle, adapting to new situations that arise from more independence may result in significant stress (Butz, Bowling, & Bliss, 2000). Psychotherapists can play a role in helping individuals meet the challenges of community placement and community integration.
As individuals with mental retardation are integrated into society, they become exposed to the same freedoms and dangers as the general population encounters. Such freedoms and dangers may result in circumstances that warrant mental health services, for example, for victims of sexual abuse (e.g., Mansell, 2002; Razza & Tomasulo, 1996), those who have committed sexual offenses (e.g., Cox-Lindenbaum, 2000; Haaven, Little, & Petre-Miller, 1990), are having problems with substance abuse (e.g., Harris & Edwardson, 1999; Mayer, 2001), or need help with suicidal ideation (e.g., Kirchner & Mueth, 2000).
Within recent years, some attention has been given to applying psychotherapeutic principles to individuals with severe/profound mental retardation. Gaedt (1995) and Sinason (1992), for example, have applied and described psychodynamic principles to help understand the behaviors of persons with severe/profound mental retardation and the interactions such individuals have with caregivers. These authors emphasized the need to help caregivers understand how psychological issues impact their interactions with individuals who have severe/profound mental retardation. It will be interesting to see whether demand and interest in this area increase as more persons with severe/profound mental retardation are placed in community settings.
Theoretical and Conceptual Issues
One can find a variety of theoretical modalities and formats applied to the practice of psychotherapy for persons with mental retardation. Practitioners in the field have drawn from modalities as diverse as psychodynamic (e.g., Carlsson, 2000), cognitive–behavioral (e.g., Hurley & Sovner, 1991), Jungian (e.g., Baum, 1999), phenomenological (e.g., Blotzer, 2000), and humanistic theories (e.g., Perkins, 1993). In addition to theoretical modalities, clinicians have used formats as diverse as brief (e.g., Anger & Hawkins, 1999), group (e.g., Tomasulo, 1994), play (e.g., Hellendoorn, 1990), and family (e.g., Lindenbaum, 2000) therapies. Although clinicians may differ in terms of orientation or strategy, there are some theoretical and conceptual issues that can apply across a variety of approaches, including recognizing the need to modify psychotherapy, being cognizant of the impact of having a disabled identity, being attuned to dependency issues, and being aware of the frequent need to involve others in the treatment process.
Although practitioners in the field firmly believe in the value of psychotherapy, they do acknowledge the need for modification to address cognitive, developmental, and speech/language deficits (e.g., Butz et al., 2000; Hurley, Pfadt, Tomasulo, & Gardner, 1996; Levitas & Gilson, 2000a; Mansell, 2002; Tallant & Johnson-Burnham, 2000; Yepsen, 1952). Suggested modifications include simplifying language, presenting information at a slower rate, checking for comprehension of concepts, repeating concepts, using concrete language, structuring therapy sessions, minimizing distractions, shortening length of sessions, using a directive approach, involving caregivers to increase generalization of skills, making concepts relevant to recent real-life situations, allowing more time for verbal responses, using nonverbal communication, being more goal focused, using visual materials, and employing role-playing methods to bolster learning. Not all psychotherapy clients will require the same modifications. An individualized assessment can help determine an individual's strengths and deficits and the required modifications (Lynch, 2000).
Having a “disabled” or “mentally retarded” identity can have a substantial impact on an individual (Aman, 1991; Sinason, 1992), which can result in emotional pain. An individual may develop a variety of unhealthy defenses and strategies to avoid confronting such pain. In this vein, Sinason (1992) referred to the defensive exaggerations that develop in reaction to having a disability as a “secondary handicap” (or disability). Psychotherapists are not immune to negative thoughts, feelings, or attitudes regarding mental retardation. As Blotzer (2000) noted, “Mental retardation evokes strong reactions and defenses against these reactions. Sometimes we are repulsed by a client's appearance, mannerisms, or poor hygiene” (p. 96). Along with Levitas and Gilson (2000b), she highlighted the value of acknowledging these negative thoughts, feelings, and attitudes when conducting psychotherapy with this population.
Although dependency issues may be relevant for any psychotherapy client, it is particularly important when working with persons who have mental retardation. These individuals tend to present with a trait termed outerdirectedness (MacMillan & Wright, 1974; Zigler, Bennett-Gates, Hodapp, & Henrich, 2002), which refers to a tendency to look to others for cues to solutions of difficult or ambiguous problems. Another useful concept is Levitas and Gilson's (1990) mediated self, which refers to the tendency of these individuals to rely on the cognitive functioning of others—particularly during times of stress. Psychotherapy can help to counteract these dependent tendencies and help a person (and caregivers) develop a healthy balance between the need for autonomy and the need for support.
For the general population, psychotherapy is usually an intensely private undertaking. With the exception of marital and family therapy, a psychotherapist's only source of information and means of influence is the client. In the field of developmental disabilities, however, a number of individuals may become involved in the therapy process. Clinicians may need to involve others in the psychotherapy process for a variety of reasons. For example, communication with others is often necessary to gauge progress, implement treatment strategies, assist with appropriate goal setting, and increase awareness of salient mental health issues.
Although the standard ethical guidelines and practices for psychotherapists apply to all clients, there are three particular areas of concern when a client has mental retardation: (a) obtaining full and voluntary consent for treatment, (b) developing treatment goals that incorporate the client's input and preferences, and (c) maintaining confidentiality.
It is sometimes difficult to determine whether full and voluntary consent for treatment has been obtained before psychotherapy is initiated for an individual with mental retardation. Although data are lacking, clinical experience dictates that it is often an agency or caretaker that refers the prospective client for treatment. Persons with mental retardation have a tendency to acquiesce in interview-like situations for a variety of reasons (e.g., Finlay & Lyons, 2002; Sigelman, Budd, Spanhel, & Schoenrock, 1981). Consequently, they may give consent for treatment even though they do not really want to or do not fully understand what treatment entails. In other cases, the individual may be referred under significant pressure. For example, I have experienced some circumstances under which clients were told that they had to undergo psychotherapy if they want to remain in their current work or residential setting. Under such circumstances, consent cannot be considered full or voluntary.
Related to consent for treatment is the setting of therapeutic goals in an ethically acceptable manner. The determination of treatment goals may be influenced by the needs of the referring agency or caregiver. Although there are no specific data on this issue, clinical experience dictates that a referral is often made for psychotherapy because the agency or caregiver is seeking to eliminate a disruptive or undesirable behavior(s). The client's preference, however, may be to develop autonomy and independence rather than eliminating specific behaviors. In addition, persons with mental retardation may be more passive with regard to allowing others to set goals for them and may view the therapist as someone who will tell them what to do without any input on their part (Levitas & Gilson, 2000a). Being aware of these issues can help psychotherapists develop treatment goals in a collaborative manner that incorporates the client's preferences and input.
As noted above, a variety of individuals may become involved in the treatment of a person with mental retardation. As such, this can lead to dilemmas centered on the issue of confidentiality. In my own experience, caregivers often assume that they can inquire about any aspect of the therapy process without seeking the consent of the client. In addition, psychotherapists may regularly be asked to present sensitive information in team meetings. Once a psychotherapist provides sensitive information, he or she has little control over how that information will be shared or used. Thus, for example, a clinician may obtain full consent from a client to release information at a staff meeting; however, neither the clinician nor the client can be certain where that information will go or how it will be used once the meeting is over.
There are many other issues and dilemmas that may arise from working with persons with mental retardation (e.g., when treating several people who live in the same residence). In all cases, a psychotherapist must consider each aspect of a situation when deciding how to resolve an ethical dilemma. Clarifying roles and expectations as early as possible can help prevent ethical dilemmas. Often, families and service providers need to be educated with regard to the psychotherapy process and the importance of such issues as confidentiality. Keller (2000), for example, suggested preparing a fact sheet about psychotherapy to give to family members and service providers. Psychotherapy clients may also benefit from education with regard to the psychotherapy process. Such education facilitates active participation in goal setting.
There have been monumental changes in health care over the past 2 decades that have significantly impacted the practice of psychotherapy. Fiscal concerns that have been affecting the field of psychotherapy as a whole are becoming increasingly relevant to the field of mental retardation, including the impact of managed-care plans; increasing restrictions on government-funded insurance programs, such as Medicaid/Medicare; and the struggle for mental health parity. As a result of changes in health care spending, psychotherapists have been pressured to provide short-term treatment that is relatively limited in scope. Although such strategies may be effective for some individuals with mental retardation, this is not always the case. Because of cognitive deficits, these individuals may need more time to learn and incorporate coping strategies. They may also require “booster” sessions (e.g., monthly, bimonthly) after the initial trial of psychotherapy to review therapeutic principles and techniques and their application to novel situations. In addition, providing psychotherapy for persons with mental retardation often involves the use of indirect services (e.g., observation, participation on team meetings, consultation with agencies and caregivers). Such services are not typically reimbursed in the current cost-cutting environment.
Although the notion that psychotherapy can be effective for individuals with mental retardation has been increasingly accepted, concerns have been expressed regarding the lack of empirically sound research (Butz et al., 2000; Prout, Chard, Nowak-Drabik, & Johnson, 2000). A large systematic review of effectiveness studies has recently been conducted by Prout and Nowak-Drabik (2003). They looked at 92 studies, covering the 1968–1998 period, in which researchers examined the effectiveness of psychotherapy. They concluded from their review that psychotherapy is “moderately” effective for individuals with mental retardation and yields a “moderate” amount of change for this group. However, they acknowledged that many of the studies were poor in terms of methodological rigor and design (e.g., based upon single-subject designs and case studies, poorly described interventions, vaguely described outcome data).
In conclusion, psychotherapeutic approaches have been applied to persons with mental retardation since the beginning of the previous century. The work in this area, however, was relatively scant and the field lacked cohesiveness. Within the past 20 years, however, significant development has occurred. The literature base has grown substantially and a greater sense of cohesiveness has been obtained through conferences, trainings, and the efforts of professional organizations. Efforts have also been made to improve mental health treatment in general for persons with mental retardation. Psychotherapy has been an important part of these efforts. However, there are some current concerns that the field will need to address in order to maintain its growth and vibrancy. Two primary areas include examining the fiscal constraints that have been affecting the field of psychotherapy as a whole and demonstrating the effectiveness of psychotherapy for individuals with mental retardation through empirically rigorous research.
The completion of this article was made possible by the support of two organizations: Developmental Disabilities Center- Mountainside Hospital and The Brothers of Charity—Ireland, 4 Anglesea St., Clonmel County Ipperary Ireland.
Author: Christopher Lynch, PhD, Principal Psychologist, Developmental Disabilities Center, Brothers of Charity, Mountainside Hospital, Montclair, NJ 07042–4837. email@example.com