Family Caregiving of Adults with Mental Retardation: Key Issues for Rehabilitation Counselors.

Rehabilitation professionals agree that families can be the "most powerful and enduring (Krause & Seltzer, 1994, p. 217) influence in the lives of persons with mental retardation (Cook & Ferritor, 1985; Kelley & Lambert, 1992; Power & Dell Orto, 1986; Sutton, 1985). Historical events and demographic changes have brought about an increased need for families to be actively involved in assisting adults with mental retardation as they secure employment, make informed choices, and achieve independence. An understanding of family processes associated with family caregiving can increase the effectiveness of rehabilitation professionals working with adults with mental retardation.

The family processes associated with caregiving can be analyzed within the context of the Resiliency Model of Family Stress, Adjustment, and Adaptation (McCubbin, Thompson & McCubbin, 1996). The Resiliency Model of Family Stress, Adjustment and Adaptation, based on earlier family stress theorists (Angell, 1936; Hill, 1949, 1958), seeks to answer this question: "What makes some families fall apart or deteriorate in the face of crises demanding changes, while other families negotiate these troubled times with relative ease by finding new patterns, and restoring and modifying old patterns of functioning?" (McCubbin et al., 1996, p. xxv). The focus of the Resiliency Model is on understanding those family strengths and capabilities which buffer the family from the disruptions associated stressors. Analysis within the Resiliency Model provides the rehabilitation counselor with a deeper understanding of the process of adjustment for the family and provides a framework for consideration of intervention based on the analysis.

The Resiliency Model has been tested with families in the general population (Lavee, McCubbin & Olson, 1987; Lavee, McCubbin, & Patterson, 1985; McCubbin, Thompson, Pirner & McCubbin, 1988), (b) families with a member with a disability (Kazak, Reber, & Snitzer, 1988; Kosciulek & Lustig, 1998; McCubbin & Huang, 1989; McShane, 1987; Patterson, McCubbin, & Warwick, 1990), and (c) families with an adult member with mental retardation (Lustig, 1997; Lustig & Akey, in press).

The Resiliency Model, a stress and coping framework based on a family systems approach, provides a theoretical basis for understanding a family's adjustment to demands placed upon the family (McCubbin et al., 1996). A stressor is defined as a demand placed upon the family that produces or has the potential to produce changes in the family system. These changes (e.g. closure of a day program, movement to a residential facility) can affect all members of the family, as well as how the family functions and the family's goals. The severity of the stressor is determined by the extent to which the stressor disrupts the family or places excessive demands on the family.

Family stress is the result of an imbalance between the demands placed on the family and capabilities of the family to deal with the stressor. When the demand-capability imbalance is pronounced the family may experience maladjustment. The ability of the family to successfully adjust to a stressor is determined by the family's vulnerability, resources, appraisal, and problem solving and coping strategies.

These determinants can be used to analyze four central issues for rehabilitation counselors in providing assistance to adults with mental retardation and their families. These issues are (a) relationships with service providers, (b) permanency planning, (c) social support, and (d) multicultural considerations. Within the context of the Resiliency Model, relationships with service providers and permanency planning are discussed as family vulnerabilities, social support is discussed as a family resource, and multicultural considerations are considered within the context of family appraisal.

Family vulnerability refers to the range of co-occurring stressors that contribute to the pile-up of demands on the family (McCubbin et al., 1996). For example, a family may experience a crisis when their daughter's supported employment program is phased out due to funding problems. This family stressor may be exacerbated when the mother quits her job in order to provide supervision during the day which, in turn, causes financial hardship. Broad categories of potential co-occurring stressors include (a) individual and family transitions, (b) prior family strains, (c) situational and contextual difficulties, (d) the consequences of the family's efforts to cope, (e) ambiguity about how the family should act in the a stressor situation, and (f) new patterns of functioning established to handle the stressor which conflict with the family's values, rules, and expectations. According to the Resiliency Model, relations with service providers can be understood as a potential co-occurring stressor related to intrafamily and social ambiguity created by inadequate guidelines on how families should cope with stressors. Permanency planning can be understood as a co-occurring stressor related to family transitions and to intrafamily and social ambiguity.

Family resources are characteristics, traits, or competencies of individuals, the family, or community that can be used to meet the demands faced when confronted with a stressor. Family social support can be thought of as an important resource emanating from persons outside the family including support from relatives, friends, and community institutions (McCubbin et al., 1996).

Family appraisal is concerned with the meaning the family attaches to individual stressors at the most specific level, and to the family's basic set of beliefs at the broadest level (McCubbin et al., 1996). The family's appraisal constitutes the family's assumptions about the family, about the family's relationships to the world, and about the world outside of the family (Reiss, 1981). The relationship between these shared family assumptions and family adjustment was expressed by Reiss and Oliveri (1980) in this way: "... it follows that if we know the family's [shared assumptions] we should be able to predict a wide range of its responses to ambiguous and stressful events in its social world" (p.435). An important determinant of the family's assumptions is the cultural background of the family (McCubbin et al., 1996).

This article first discusses trends predicting the family's continued central importance for services to adults with mental retardation. Next, four central issues important for rehabilitation counselors working with adults with mental retardation are discussed: (a) relationships with service providers, (b) permanency planning, (c) social support, and (d) multicultural considerations. Finally, assessment instruments useful to rehabilitation counselors are introduced.

Central Role of Families

Demographic shifts and changes in caregiving needs converge into three trends suggesting that the family will continue to be an important context for adults with mental retardation into the next millennium. First, the vast majority of the approximately seven million individuals with mental retardation will live with their parents for their entire life (Seltzer & Krauss, 1994; The Arc, 1993). It is estimated that 80 to 85% live with their parents, typically until the parents' health declines or they die (Heller, 1993; Meyers, Borthwick, & Eyman, 1985). Second, the life expectancy of individuals with mental retardation has been increasing for several decades (Janicki & Wisniewski, 1985; Walz, Harper, & Wilson, 1986). In fact, individuals with mild retardation can expect to live as long as persons without mental retardation (Eyman & Borthwick-Duffy, 1994) and, consequently, it may be assumed that most individuals with mental retardation will outlive their parents. The reasons cited for increased longevity are improved health care and deinstitutionalization (McDermott et al., 1996). The third trend is the aging of the general population. The number of Americans age 65 or older has increased from 7% of the population in 1940 to 13% today and is expected to increase to 20% of the population by 2030 (Senate Task Force on Social Security, 1997). These three trends suggest that a family caregiver could provide care for a person with mental retardation for sixty years or longer.

Parents have been a driving force in shaping the substance of services and laws related to individuals with mental retardation (Turnbull & Turnbull, 1997). For example, The Arc, a grassroots organization, has successfully advocated for community-based services for individuals with mental retardation (The Arc, 1997; Turnbull & Turnbull, 1997). Parents strongly influenced the passage of the Education for All Handicapped Children Act and subsequent amendments (Heward, 1996; Turnbull & Turnbull, 1997). Advocacy groups, including parent groups, were essential to the passage of the Americans with Disabilities Act (Dart & West, 1995). As Dart and West (1995) have noted, the ADA was initiated by advocacy from the disability community. It can be stated that the history of people with mental retardation has also been the history of their families (Marsh, 1992). Current legislation clearly states that families of individuals have an important and valued role in the rehabilitation process. For example, the 1992 Amendments to the Rehabilitation Act (PL 102-569) state that it is important to support the involvement of a parent or family member in the rehabilitation of the individual with a disability.

The family of the individual with mental retardation has historically been involved in the development of services on local, state and federal levels, and in the lifelong care of their child. The intersection of demographic, caregiver, and historical trends suggest that the family will continue to be play an important role for rehabilitation services to individuals with mental retardation.

The effectiveness with which rehabilitation professionals carry out the family-focused mandate of the 1992 Amendments to the Rehabilitation Act (PL. 102-569) is linked to their understanding of the factors that influence the family of the individual with mental retardation. The following considerations give the rehabilitation professional a basic understanding of the impact of the family on the adult with mental retardation.

Relations to Service Providers

Empirical Bases

As the 1992 Amendments to the Rehabilitation Act (PL 102-569) stated, the involvement of the family of the individual with a disability should be supported. Parental participation and support can be critical to the success of a rehabilitation plan. For example, it is unlikely that supported employment would be successful when the parents are unwilling to provide assistance with transportation, ensure that the supported employee is prepared to go to work, and provide emotional support and encouragement (Wehman et al., 1992; West, 1992).

Involvement in the rehabilitation process may be problematic for rehabilitation counselors and families for several reasons. Case managers working with adults with developmental disabilities expressed frustration working with aged caregivers and felt these caregivers were less trusting than others they counseled (Smith & Tobin, 1993). In addition, case managers felt parents were resistant to change when it was, in the opinion of the case manager, in the best interest of the client.

Professionals sometimes send a message to caregivers that they are either doing too little or too much (Ferguson et al., 1988; Hanley-Maxwell et al., 1995; Irvin, 1993). Parents who are considered nonparticipants often give professionals great latitude, while involved family members may conflict with professionals about outcomes (Stineman, Morningstar, Bishop, & Turnbull, 1993). While parents may feel an increased need to be involved in securing services, they are also confronted with "cultural norms that typically include less parental involvement in the daily life of the child" (Ferguson et al., 1988, p. 177). Jamison (1993) noted that parents have concerns related to the delineation of both parental and professional roles in the vocational rehabilitation of their child.

Resource barriers may also affect the relationship between service providers and families. Resource barriers refer to the time, opportunity, and supports needed to make it possible for the family to become involved (Moxley, Raider, & Cohen, 1989). For example, a parent who is asked to attend a meeting during work hours may find it difficult or impossible to take time off from work. What may appear to be uncooperativeness may, in fact, be difficulty attending meetings and conferences because of conflicting work schedules or a problem in securing child care (Wehman et al., 1992).

Irvin (1993) stated that many parents have difficulty interacting with professionals for two reasons. First, while professionals encourage maximizing adult independence, they may not understand the cost in terms of time and energy. Parents consider the effect of involvement in terms of a lifetime of meeting the daily needs of family life. Thus, burn-out may be an issue. Some parents tire of dealing with the system and want to avoid further interactions. Second, parents may be skeptical, believing that professionals are not listening to them. Older parents, in particular, are more likely to be skeptical of service systems because they cared for their child at a time when institutional care was the only other option and contact with professionals was thought to lead to institutionalization (Smith et al., 1994; Smith & Tobin, 1993).

Practice Implications

The Resiliency Model posits that the uncertainty associated with a stressful situation can increase the likelihood that the family will encounter adjustment problems (McCubbin et al., 1996). For most situations families have an expectation that society will offer guidelines for dealing with the stressor. When society offers no advice, inappropriate advice, or is not supportive of the family's efforts, then the family's stress will increase. The uncertainty associated with the conflict between the need to be more involved when their child enters adulthood and societal beliefs that suggest less parental involvement (Ferguson et al., 1988) can be understood as co-occurring stressors.

While the parameters of the consumer's involvement in the rehabilitation process are typically specified (e.g. Individualized Written Rehabilitation Plan), the boundaries of the parent's participation are often unclear. Consistent with the Resiliency Model, rehabilitation counselors should facilitate the development of family guidelines for providing services to a client with mental retardation and be supportive of family efforts to assist their child. Walker and Singer (1993) offered professionals several principles for improving relationships with parents: (a) parents and professionals should work as allies; (b) professionals should be flexible in accommodating family's roles; (c) both parents and professionals should demonstrate knowledge of and respect for each other's expertise; (d) since the rehabilitation system and family system can constrain both the parent and professional, identifying those constraints is important; and (e) professionals and parents should respect differences in culture, beliefs, class, and family structure.

A number of approaches have been developed which facilitate family involvement in the planning process. Person-centered planning is a planning method for developing a parent-professional partnership (Stineman et al., 1993). The person-centered team, comprised of the individual with mental retardation, the family, school personnel, rehabilitation counselor, and other interested stakeholders, develops an action plan following an eight step process: (a) build a positive profile of the consumer; (b) develop a relationship diagram, identifying the significant people in the consumer's life; (c) create a vision of the future; (d) identify goals; (e) brainstorm obstacles; (f) brainstorm resources; (g) prioritize options and resources; and (h) develop an action plan (Stineman et al., 1993). Other planning methods include Group Action Planning (Reilly & Lustig, 1997), McGill Action Planning System (Vandercook, York, & Forest, 1989), Personal Futures Planning (Mount & Zwemik, 1988), and Circles of Support (Reilly & Lustig, 1997).

Permanency Planning

Empirical Bases

Since the majority of adults with mental retardation living with their parents will survive their parents, an important issue for these families is to plan for the residential transition from the home when the parents are unable to provide care or the parents die (Marsh, 1992; Turnbull, Summers, & Brotherson, 1986; Wood, 1993). Permanency planning for the transfer of care involves planning for the residential, legal, and financial situation of the individual with mental retardation (Smith & Tobin, 1989; Wood, 1993). A substantial number of parents have talked about the future of their child after they are gone (Heller & Factor, 1991; Kaufman, Adams, & Campbell, 1991; Smith et al., 1994). Reasons for not initiating permanency planning include: (a) belief by the caregiver that they would outlive their son or daughter, (b) "mutual dependencies" (Wood, 1993) where the caregiver role can be gratifying and the adult child may provide both material and emotional assistance to the caregiver, and (c) the realization that acceptable residential alternatives are limited (Wood, 1993). While many families have not planned for the future living and financial situation of their son or daughter, concerns about what will happen to their child after they are gone are consistently mentioned as an area of great concern to these families (Heller, 1993; Heller & Factor, 1991; Kaufman, Campbell, & Adams, 1990). It is not unusual for families to first consider residential options after a family crisis, such as a debilitating illness of a caregiver (Heller & Factor, 1991). When a family experiences a caregiver crisis, professionals assisting the family often must find an emergency placement (Heller & Factor, 1991).

Most states have waiting lists for out-of-home residential options (Essex et al., 1997; The Arc, 1997). While considerations about the future of their child can engender parental anxiety (Freedman, Krauss, & Seltzer, 1997), the person with mental retardation may experience trauma when faced with both the loss of their parents and the need to move to another residence (Smith & Tobin, 1989). When caregivers are asked what their preferences are for residential placement, most parents would prefer a family member to continue care (Heller & Factor, 1991, 1993; Wood, 1993). While it may be preferred that their child reside with a family member, the willingness of other family members to continue care will vary from family to family. Two factors that increase the likelihood that there will be a transfer of care from the parents are higher maladaptive behaviors (Heller & Factor, 1991, 1993) and the declining health of the caregiver (Seltzer, Greenberg, Krauss, & Hong, 1997).

Practice Implications

Permanency planning can be understood as a co-occurring stressor related to family transitions and intrafamily and social ambiguity (McCubbin et al., 1996). The planning and eventual movement of the individual from parental care to care by others is a predictable, although non-normative, family transition. Family transitions are a time of increased stress involving "adjustment, reorganization, consolidation, and adaptation" (Olson et al., 1983, p. 113). When the family transition is non-normative there can be additional stress-related differences between cultural expectations and the experiences of these families (Fewell, 1986; Neugarten, 1976; Turnbull, Summers & Brotherson, 1986; Wikler, 1981). Thus, while the transition from parental care to care by others is stressful, the lack of societal prescriptions make the situation more stressful.

The impact of delayed permanency planning on the rehabilitation process can be considerable. For example, an unanticipated change in caregiver and residence could disrupt supported employment as the consumer adjusts to the loss of his/her parent and entrance into a new residence. The primary focus for the rehabilitation professional is to begin planning for changes in the individual's residential, legal, and financial situation before the caregiver can no longer provide care. As Seltzer et al. (1997) have noted, the declining health of the caregiver is a warning that the rehabilitation professional should start to discuss permanency options. Consistent with the Resiliency Model, the predictable yet uncertain nature (e.g. typically long waiting lists for out-of-home residential placement) of the transition away from parental care suggests that permanency planning should occur long before the caregiver's health is declining.

Social Support

Empirical Bases

Social support is an important resource in family adjustment (Cobb, 1982; Dunst, Trivette, & Cross, 1986; Dunst, Trivette, & Deal, 1988; Heller & Factor, 1993; McCubbin, Thompson, & McCubbin, 1996; Trivette & Dunst, 1992). Two forms of support have been identified. First, formal support is support received from government, service agencies, or self-help groups. Support groups are particularly effective in assisting families because the members of the groups "understand the pain, know the system, are aware of the resources, and are educated about the condition" (Lefley, 1997, p. 447). Second, informal support is received from extended family, neighbors, co-workers, or friends. These two kinds of support provide an avenue for parents to give and receive affective and instrumental assistance. The social support received by the family can affect the success of the son or daughter with mental retardation in vocational endeavors such as supported employment. For example, being able to discuss concerns with other parents about supported employment (affective assistance) or having a neighbor that can transport their child to a work site when necessary (instrumental assistance) can increase the likelihood that the supported employment experience will be positive and successful (Antonak, Fiedler, & Mulick, 1989; Ferguson, Ferguson, & Jones, 1988; Thorin & Irvin, 1992; Wehman, Sale, & Parent, 1992).

Research has shown the effectiveness of social support on reducing caregiver stress and burden. Heller and Factor (1991) found that caregivers reporting low informal social support and a high number of unmet service needs (i.e. formal supports) were more likely to perceive higher caregiving burden. Essex, Seltzer, and Krause (1997) found that the larger the mother's social support network, the less likely the child would be placed on a waiting list for residential placement outside the home. Support from nondisabled siblings also affects the family caregiver. Seltzer, Begun, Seltzer, and Krauss (1991) found that only 20% of the nondisabled siblings provided instrumental support. Maternal well-being, morale, and health are associated with increased levels of sibling involvement in the family (Seltzer et. al., 1991).

Other studies have shown that sometimes too much support can be stressful (Krause, 1995). It has been suggested that social support can become a stressor when the support provider implies that the support receiver is not competent or when the support provider provides tangible support but not emotional support (Krause, 1995). Greenberg, Seltzer, Krause, and Kim (1997) suggested that when the support provider is also a parent, the supporter may need assistance and consequently may increase the support receiver's focus on their own problems.

Practice Implications

Within the context of the Resiliency Model, social support can be understood as an important resource available for dealing with stressors and promoting family adjustment (McCubbin et al., 1996). As professionals, an important focus should be to increase a person's level of social support (Heller & Factor, 1993) and to elicit from the parents whether the support is perceived as helpful. Professionals can increase a family's use of formal supports through referral to available services (Seligman & Darling, 1989). For some families the use of formal support services is limited (Smith, Fullmer, & Tobin, 1994) and for others the impact of informal supports on family adjustment is significant (Dunst et al., 1988; Heller & Factor, 1993). Smith et al. (1994) noted that for those families with limited involvement in the formal service system, attempts to connect these families with available supports could be difficult. Long-term efforts by service professionals may be required. For example, while the consumer is receiving vocational assistance from a State Vocational Rehabilitation agency, the family may not be receiving other kinds of assistance such as independent living services.

One reason cited for nonuse of services is a historical distrust of service providers by some families (Smith et al., 1994). Thus connecting these families with appropriate support may be more difficult for the rehabilitation professional than it would be to connect other consumers and families on their caseload. Involvement of families with relevant service systems can be increased when interaction between families and professionals is based on family-centered principles which are consumer driven, and emphasize shared responsibility and collaboration (Dunst, Trivette, Statues, Hamby, & Gordon, 1993; Reilly & Lustig, 1997). It is likely that the most salient social support for these families will come from friends and relatives (Dunst et al., 1988; Heller & Factor, 1993). Consequently it is important for the rehabilitation practitioner to elicit the participation of the family in the rehabilitation process and consider the nature of the social support received from other friends and relatives.

Families with inadequate social support from persons outside the family can become involved in support groups with families having common experiences. For example, parent-to-parent programs provide emotional support by matching a trained veteran parent in a one-to-one relationship with a parent in need of support (Santelli et al., 1993). Parent-to-parent groups and other forms of support groups provide an avenue for parents to assist and support other families. Psycho-educational support groups have also been helpful to parents of adults with mental retardation (Smith, Majeski, & McClenny, 1996). It is important for the rehabilitation professional to be knowledgeable about the range of formal social support resources in the community and to consider whether these resources meet the specific needs of the caregivers (Greenberg et al., 1997).

Multicultural Considerations

Empirical Bases

While families from different cultures must learn to cope with the same kinds of potential stressors (e.g. money, work, aging, success), the manner in which families respond to these stressors differs from one culture to another (Gladding, 1998). Although a family's identification with a particular cultural group can provide insights into the family's pattern of thinking, feeling, and behaving (McGoldrick, 1993), each family must be considered unique (McCallion, Janicki, & Grant-Griffin, 1997). While rehabilitation counselors working with families cannot expect to be an expert on all cultures (Gladding, 1998), certain cultural themes have been identified which can be used to differentiate the experience of families from groups with diverse cultural backgrounds (McCallion et al., 1997). In a qualitative study of older caregivers of individuals with developmental disabilities, focus groups with African American, Chinese American, Haitian American, Hispanic/Latino American, Korean American, and Native American groups identified the following factors which distinguished particular cultural groups: (a) how the disability is perceived; (b) who is considered part of the family; (c) who provides care; (d) how the family makes decisions; (e) what family members expect of each other; (f) what is the level of support received from friends and community; (g) whether and how closely the family adhered to traditional values; and (h) how willing is the family to accept outside help (McCallion et al., 1997). McCallion and associates stated that participants believed that their perceptions and beliefs about disability and caregiving were tied to their cultural values, but beliefs that highly differentiated one group from another were not identified. Rather, similarities between groups were emphasized with the level of emphasis on the values serving to distinguish the groups.

Practice Implications

Within the context of the Resiliency Model, multicultural considerations can be understood as an important influence on the family's appraisal, defined as the family's assumptions about the family, about the family's relationships to the world, and about the world outside of the family (Reiss, 1981). A thorough understanding of the cultural influences which inform the family's appraisal assist the rehabilitation counselor in providing services in a culturally competent manner. Discussion with the family about the considerations discussed earlier (e.g. how the disability was perceived and who is considered part of the family) are focus points for the rehabilitation counselor to begin to understand the cultural perspective of the family.

There are general competencies that rehabilitation counselors can develop that may assist in counseling families from many cultures (Gladding, 1998). The following competencies are suggested by Gladding (1998) that counselors should: (a) be sensitive to the similarities and differences between themselves and the families they are counseling; (b) accept families from diverse cultures; (c) consider utilizing the support networks emanating from the family's cultural setting; and (d) consider each family unique. Generalizations about a culture can be instructive but should only be used as a guide to developing counseling approaches for a particular family.

Assessment Methods

Use and Instruments

Since the family may significantly affect the rehabilitation of the adult with mental retardation, gathering information about family functioning is important. Assessment may serve several functions, including (a) screening and general disposition, (b) definition of the problem, (c) planning treatment, (d) monitoring treatment progress, and (e) evaluation of treatment outcomes (Carlson, 1995). The rehabilitation counselor does not typically function as a family counselor (Herbert, 1989); the primary function of the family assessment is to screen families for potential problems and, if appropriate, refer to a qualified family counselor.

The following family assessment instruments have shown adequate evidence of reliability and validity. These instruments may be useful in providing the rehabilitation practitioner with basic information about the family that may be useful when considering referral to a family counselor. Each instrument is a self-report measure and consequently provides the rehabilitation professional an insiders view of the family (Carlson, 1995).

Family APGAR The Family APGAR is a five-item instrument that assesses the respondent's view that the family is either a psychosocial resource or lacking in social support (Sawin & Harrigan, 1994). The five statements are: (a) I am satisfied that I can turn to my family for help when something is troubling me; (b) I am satisfied with the way my family talks over things with me and shares problems with me; (c) I am satisfied that my family accepts and supports my wishes to take on new activities or directions; (d) I am satisfied with the way my family expresses affection and responds to my emotion, such as anger, sorrow, or love; and (e) I am satisfied with the way my family and I share time together. For each of the five statements the respondent chooses almost always, some of the time, or never. Results suggest a high level of family dysfunction, a moderately dysfunctional family, or good family functioning. Internal consistency reliability has been reported between .80 and .90 and test-retest reliability (2 weeks) as .82 (Sawin & Harrigan, 1994). Evidence of validity is found in correlations between similar measures of family functioning, such as the Feetham Family Functioning Scale (Sawin & Harrigan, 1994). The instrument was able to predict postpartum complications in high-risk mothers and discriminate between well-adjusted and maladjusted students (Sawin & Harrigan, 1994). The Family APGAR requires a reading level of a 10-year-old but a simplified version may be used with individuals with lower reading levels.

Family Adaptability and Cohesion Evaluation Scales II (FACES II) FACES II measures the cohesion and flexibility of the family system (Olson, Portner, & Bell, 1982; Olson, Russell, & Sprenkle, 1983; Olson, Sprenkle, & Russell, 1979). These two dimensions have been critical to understanding family functioning. Family cohesion is the emotional bonding that family members feel toward one another. Family adaptability is the family's ability to change its relationship roles and rules. The FACES II can be completed by one family member who represents the way the family functions or by more than one family member. Since the instrument requires at least a seventh grade reading level, it may be inappropriate for the client with mental retardation. Respondents read 30 statements and rate the frequency of the behavior from 1 (almost never) to 5 (almost always). FACES II may be self-administered (requires about a seventh grade reading level) or used as part of an interview. Based on normative data, families are classified on the dimensions of cohesion and adaptability. The therapeutic goal is to move families from disengaged to very connected on the cohesion scale and from rigid to very flexible on the adaptability scale. Various versions of FACES have been used in hundreds of studies, providing strong evidence of its research and clinical usefulness. Internal consistency reliability has been measured at between .78 and .87 and test-retest reliability (4 weeks) at .80 (Olson et al., 1982). Factor analysis has supported the two hypothesized scales (Sawin & Harrigan, 1994). The FACES has discriminated between families experiencing problems and families experiencing few problems. FACES has shown a significant relationship to family adjustment in families with a member with a disability (Kazak, Reber, & Snitzer, 1988; Kosciulek & Lustig, 1998; Lustig, 1997; Lustig & Akey, in press; McCubbin & Huang, 1989; McShane, 1987).

McMaster Family Assessment Device (FAD) The FAD measures family functioning in six areas: problem solving, communication, roles, affective involvement, affective responsiveness, and behavior control (Epstein, Baldwin, & Bishop, 1983). In addition there is a measure of overall, general functioning. The 60-item instrument may be self-administered (seventh grade reading level) or used as part of an interview. The scales can be used to develop a profile of the family's strengths and weaknesses. Internal reliability consistency ranged from .57 to .86 for the six scales (Epstein et al., 1983). Test-retest reliability (two week) ranged from .66 to .76 (Sawin & Harrigan, 1994). It should be noted that the roles scale has not demonstrated adequate reliability and, consequently, is not recommended for use. The FAD has been shown to discriminate between clinical and nonclinical families and to be associated with various indicators of family functioning (e.g. postdivorce adjustment, recovery from stroke) (Epstein et al., 1983). The FAD - General Functioning scale has shown a significant association with measures of social support, adaptability and cohesion (Lustig, 1997; Lustig & Akey, in press).

Personal Resource Questionnaire (PRQ - 85) The Personal Resource Questionnaire (Brandt, & Weinert, 1994; Weinert, 1987; Weinert & Brandt, 1987; Weinert, & Tilden, 1990) measures social support in a two-part self-administered questionnaire. Part one consists of ten life situations in which one might be expected to need support. For each situation respondents are asked to state who would provide assistance (e.g. friend, co-worker, self-help group), whether they have needed help in that area in the past six months, and whether they were satisfied with the assistance received. Part One provides descriptive information about the availability of social support resources and their satisfaction with those resources. Part Two is a 25 item global measure of social support that measures the respondent's level of perceived social support. An internal consistency estimates of .90 and .93 has been reported (Lustig, 1997; Weinert & Brandt, 1987). The PRQ has shown a significant relationship to family functioning in families with an adult with mental retardation (Lustig, 1997) and a significant relationship to positive health practices (Hubbard, Muhlenkamp, & Brown, 1984).

In addition to the preceding instruments the rehabilitation counselor may conduct an interview with the client and family (Herbert, 1989). Power and Dell Orto (1986) have proposed that rehabilitation counselors explore (a) the strengths and weaknesses of the family's structure that would influence the consumer, (b) the family's response to the consumer's disability, (c) the information and expectations that the family has about the consumer's disability, and (d) the service needs of the family.

Practice Implications

As a rehabilitation professional gathers information about the impact of the family on the consumer, the following factors should be considered. First, while interviewing various members of the family may be beneficial, some instruments may have reading levels that are too difficult for a particular family member. The simplified version of the Family APGAR or an interview may be an appropriate alternative. Second, there are positive aspects of caregiving for the adult child with mental retardation (e.g. emotional support of caregiver by individual with disability and material assistance with family chores). These positive aspects may be interpreted as negative within a culture that values independence of the adult with mental retardation rather than interdependence. The information gained from the assessment should be interpreted within the context of the unique caregiving circumstances of the family. For example, the family may need to spend a considerable amount of effort in caring for the individual with mental retardation and the FACES II may suggest a problem in this family when they are actually responding appropriately to the family situation (Padula, 1995).

Discussion

The Resiliency Model provides a framework for the rehabilitation counselor to understand the impact of the family on the adult with mental retardation. The understanding of key issues confronting these families - relationships with service providers, permanency planning, social support, and multicultural considerations - is enhanced when they are conceptualized as family vulnerabilities, resources, and appraisal within the context of the Resiliency Model. Of these concepts, family appraisal underscores the importance of viewing the family from the family's perspective. For example, the rehabilitation counselor may see a need for planning for residential options, while the family may have more immediate concerns related to supervision during day hours when the consumer is not in supported employment. While it is essential that the counselor understand the potential issues confronting these families, the relative gravity of these issues for the family will vary at different times in the family life cycle and from family to family (Aldous, 1978; Duvall, 1977; Olson, et al., 1983; Turnbull et al., 1986).

The importance of viewing the family situation from the perspective of the family is an important concept in family theory (Hill, 1958; McCubbin et al., 1996; Patterson & Garwick, 1994). The family perspective is the "interpretations, images, and views that have been collectively constructed by family members as they interact with each other; as they share time, space, and life experiences, and as they talk with each other and dialogue about these experiences" (Patterson & Garwick, 1994, p.288). The family perspective assists in predicting the family's response to situations related to their child with mental retardation (Reiss & Oliveri, 1980). Each family develops its own perspectives and consequently will perceive its relationships with service providers, permanency planning, social support, and the impact of cultural considerations differently.

An accurate understanding of the family's perspective increases the effectiveness of the rehabilitation counselor. This understanding is also an important step in the rehabilitation counselor's efforts to empower the family to act on their own behalf (Dunst et al., 1993). Ultimately, the family benefits when it can achieve permanency plans in a timely fashion, interact with service providers effectively, seek out social support when needed, and interact meaningfully with a rehabilitation counselor from a culture different from its own.

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Daniel C. Lustig, Ph.D., Department of Rehabilitation and Special Education, Auburn University, 1228 Haley Center, Auburn, AL 36849-5226.