Jennifer Wood, Laura Jackson
Due to the increasing number of adults with developmental disabilities who survive into late adulthood, future planning becomes imperative as parents or family members can no longer expect to outlive their children with developmental disabilities. Despite this, research indicates that few families of adults with developmental disabilities engage in future planning (Heller & Factor, 1991; Kaufman, Adams, & Campbell, 1991). The purpose of this study was to assess the degree to which parents and guardians of adults living in a residential setting plan for the future care needs of their loved ones. Results of The Baddour Center Future Planning Questionnaire indicate that, although the majority of family members have taken some steps to plan for the future care of their loved one, a need continues to exist among family members and guardians for further education and information regarding issues such as establishing guardianship, trusts, wills, and advanced directives, as well as information on future placement options.
Recently, increased attention has been devoted toward improving caregiver awareness of the importance of planning for the lifetime of an older person with developmental disabilities. Several organizations such as The Rehabilitation Research and Training Center on Aging with Developmental Disabilities and The Arc have developed programs specifically designed to assist family members in locating support services for their aging children with developmental disabilities (www. thearc.org/). This focus on future planning is largely due to the increasing number of adults with developmental disabilities who survive into late adulthood. Current estimates indicate that there are approximately 526,000 adults age 60 and older who are diagnosed with mental retardation or other developmental disabilities. This figure is expected to double to 1,065,000 by 2030 as "baby boomers" begin to reach their 60s (Heller & Factor, 2002). Due to changes in life expectancy, persons with mild mental retardation can now be expected to live as long as the non-cognitively impaired population and, in the absence of severe or multiple disabilities, they are likely to experience many of the same or similar age-related medical conditions as other elderly adults (Heller & Factor, 2002; Janicki & Wisniewski, 1985).
Given these changes, future planning becomes imperative as parents or family members can no longer expect to outlive their children with developmental disabilities. Despite this, research indicates that few families of adults with developmental disabilities engage in future planning (Heller & Factor, 1991; Kaufman, Adams, & Campbell, 1991). Broadly defined, future planning involves establishing financial and legal provisions with attention to issues such as living arrangements, educational programs, vocational, leisure, employment and other personal needs of an individual throughout his or her life time (Berkobien, 1991). Several explanations have been offered to account for the lack of permanency planning among families of adults with a developmental disability. As Kaufman, Adams, and Campbell (1991) point out, future planning is not only a multidimensional concept but a complex process in that the ideal plan should address the individual's current and future residential, financial, and legal needs while allowing for and adapting to potential changes in those needs. Designing a stable yet flexible plan that adequately addresses each of these domains can be a daunting and confusing task. Failure to plan may also be a result of the emotional and social difficulties in making such plans (Freedman & Freedman, 1994), or to the presumption that a sibling will eventually assume the care giving role (Goodman, 1978; Heller & Factor, 1991; Kaufman et al., 1991; Krauss, 1990).
In general, little is known about how families plan for the future needs of their disabled children (Griffiths & Unger, 1994). In a study of older adults providing in-home care for an adult child with mental retardation, Kaufman et al. (1991) found that 51% of parents had made no plans for their son or daughter's future care needs. Instead, several of these parents assumed that when they were no longer able to care for their child that the role of caregiver would be passed on to a sibling. Of those parents who indicated that they had engaged in some type future planning, 48% had secured written arrangements, 39% had an informal agreement with family members, and 14% had made both formal and informal plans for the future care needs of their child. In assessing a variety of individual variables, Kaufman at al. (1991) also found that the gender of dependent child, family income, and racial group were all significantly related to future planning. More specifically, parents whose dependent child was female were more likely to have engaged in future planning than parents of males. The researchers also found that Caucasian parents were more likely to have developed plans to meet the future care needs of their child than African American parents and that parents with a high estimated income were more likely to plan for the future than parents with a low estimated income.
Given that a large proportion of adults with mental retardation now reside at home, research has largely focused on this community population with relatively little attention devoted to assessing future planning among parents of adults who reside in residential facilities (Griffiths & Unger, 1994). The purpose of this study was to assess the degree to which parents and guardians of adults living in a residential setting engage in future planning. Participants included family members and guardians of residents of The Baddour Center, a private residential facility for adults with mild to moderate mental retardation, located in Senatobia, Mississippi. The Baddour Center Future Planning Questionnaire was used to obtain information from family members or guardians of Baddour Center residents concerning any efforts to establish future plans. Participants were asked to provide information regarding legal guardianship, financial planning, and future care needs. Demographic data for both residents and their family members was gathered from existing information on file at the Center. In addition to investigating the types of plans developed by residents' family members, an exploratory analysis was conducted to assess the relationship between future planning and participant variables such as age and gender. In accordance with previous research it was hypothesized that family members and guardians of female residents would be more likely to engage in future planning than those of male residents. In addition, it was expected that the degree to which families engage in future planning would vary by respondent age with older family members and guardians evidencing a greater degree of future planning than younger family members.
Participants The research sample included 134 (80 women and 54 men) family members and guardians of Baddour Center residents. Participants ranged in age from 42 to 91 years (M = 65). Of the 134 family members and guardians who completed the survey, 133 were Caucasian and 1 respondent was of Asian descent. Respondents resided in 28 different states, with the majority of participants located in the southern region of the U.S.. The dependent adults of those participants surveyed ranged in age from 23 to 69 years (M = 43).
Materials The Baddour Center Future Planning Questionnaire (BCFPQ), an 11-item self report measure, was used to obtain information from family members or guardians of Baddour Center residents concerning any efforts to establish future plans. More specifically, respondents were asked to provide information concerning legal guardianship, financial planning, future care needs, plans for care beyond that provided by The Baddour Center, and desire to receive further information regarding future planning. With regard to legal guardianship, respondents were asked to indicate whether or not the resident had a court-appointed guardian, to provide information about that person including their relationship to the resident, and to note whether or not an alternative guardian had been named in the event that the primary guardian should become unable to fulfill his or her obligations. If a guardian had not been appointed, respondents were asked to indicate who is currently responsible for assisting the resident with life decisions and who will assume this role if the primary party is no longer able to assist the resident. For items addressing financial planning, if the individual in charge of making financial decisions for the resident was different from the guardian or primary decision maker, respondents were asked to provide The Center with their identifying information as well as information regarding who will assume this role in the event that the primary party is no longer able to perform his or her duties. In order to gauge the degree to which respondents have considered the general future care needs of their family member, participants were asked to indicate with a yes or no response whether any plans had been established involving meeting the future care needs of the resident such as wills, trusts, preplanned funeral arrangements, etc.. To assess the degree to which respondents have considered planning beyond placement at The Baddour Center, participants were asked to provide a yes or no response to the question, "Have any plans been made for your family member should they need more intensive care than that provided by the Baddour Center?" Finally, participants were asked to indicate whether or not they would like to receive further information regarding future planning.
Procedure Questionnaires were initially mailed out to the primary contact for each resident in November of 2000. Each potential participant received a packet containing an informational letter explaining the purpose of the questionnaire, a copy of the Baddour Center Future Planning Questionnaire, and a postage-paid return envelope. The following February, a second set of questionnaires was sent to all individuals who had not responded to the first mailing.
Initially, descriptive statistics were used to analyze the data from the BCFPQ. Percentages were calculated in order to assess the proportion of respondents who had taken steps to ensure that the future needs of their loved one would be met. In addition, a correlational analysis was conducted to assess the relationship between future planning and participant age. In accordance with research conducted by Kaufman et al. (1991), a t-test was used to detect differences in the extent to which families engage in future planning for male and female dependents.
Of the 168 surveys mailed out, 134 completed questionnaires were returned for a response rate of 80%. Among the completed questionnaires, 70% were completed by a parent, 17% by a sibling, 9% by another relative, and 4% were completed by a friend or corporate guardian. Responses for those items designed to gather information concerning legal guardianship indicated that 50% of residents had a court-appointed legal guardian. Data regarding the relationship of the guardian to the resident revealed that 61% of guardians were parents, 19% siblings, 12% other relatives, 5% friends, and 3% were corporate guardians. For 51% of the residents with a legal guardian, an alternate guardian had been named in the event that the primary guardian is no longer able to fulfill his or her duties. When asked whether or not an individual had been appointed to manage the resident's financial matters, 66% of respondents indicated that they have selected someone to supervise the resident's financial affairs. Of the 134 respondents, 76% indicated that plans had been made concerning the future care needs of their family member (burial plans, wills, etc). Eight-nine percent of participants surveyed noted that they had not made any plans for their family member should they require more intensive services than The Baddour Center provides. The majority (81%) of respondents indicated that they would like to receive more information concerning future planning.
A Pearson Product Moment Correlation was used to assess the relationship between future planning and participant age. Analysis revealed that there was no significant relationship between participant age and future planning, r (133) = .058, p>.05. Thus, the extent to which respondents engaged in future planning does not appear to be related to the respondent's age. An independent t-test was used to assess any differences in the amount of planning reported by respondents for male and female dependents. Contrary to the hypothesis, there was no significant difference in the degree to which families engaged in future planning by resident gender, t (132) = .631, p> .05. In other words, families whose dependent child was female (M=2.39) were as likely to engage in future planning as respondents whose dependent child was male (M=2.27).
The present study sought to examine the degree to which parents and guardians of adults from a residential facility for individuals with mild to moderate mental retardation engage in future planning. Results from the Baddour Center Future Planning Questionnaire revealed that, in general, the majority (76%) of participants had engaged in some type of future planning such as investing in a burial plan or establishing a will to provide for the future care of their family member. With regard to financial planning, 66% of respondents indicated that they had selected someone to manage their family member's assets. Data collected for items concerning legal guardianship revealed that only 50% of residents had a court-appointed guardian. In most cases, this role was filled by either parents (61%) or siblings (19%). Eight-nine percent of participants indicated that they had not made any alternate plans should their family member require more intensive services than The Baddour Center can provide. The majority of those surveyed, 81%, indicated that they would like to receive more information about future planning. Contrary to hypotheses, there appeared to be no relationship between future planning and respondent age and no difference in the extent to which families engaged in future planning for male and female residents.
Compared with previous research, it appears that families of adults with mental retardation who live in a residential setting may be slightly more proactive in establishing future plans than parents who provide in-home care for their adult children. Several factors may account for this difference. For instance, Kaufman et al. (1991) noted that family members who provide in-home care for an adult with a developmental disability may have little to no involvement with formal service delivery systems. Such lack of contact with public or private mental retardation facilities may serve to restrict exposure to valuable information resources. On the other hand, parents or guardians who choose to place their loved one in a residential facility may have a greater degree of contact with formal service systems or access to a more extensive network of information and/or resources. In their study Kaufman et al. (1991), also found that the likelihood of future planning was influenced by caregiver variables such as income and racial group. Their research suggests that parents who have a high estimated income are more likely to engage in future planning than parents with a low estimated income level. Although income was not directly measured in this study, it is generally assumed that the socioeconomic status of most Baddour residents ranges from the middle to upper income level. Data from Kaufman et al.'s (1991) study also suggest that Caucasian parents are more likely to have begun the permanency planning process than African American parents. As previously noted, all but one of the participants in the current study were Caucasian. Thus, the restricted range of income levels and racial groups represented in this sample may account for the slightly higher rate of future planning among participants in this study. The problem of restricted range may also account for the absence of a relationship between future planning and participant age. As previously noted, the average age of respondents was 65 years. Although, intuitively, it seems that as caregivers age planning for the care of a dependent child would become more salient, this relationship may have been hard to detect given the limited age range of participants in this study.
Taken together these results indicate that, although the majority of family members have taken some steps to plan for the future care of their loved one, a need exists among family members and guardians of Baddour Center residents for further education and information regarding issues such as establishing guardianship, trusts, wills, and advanced directives, as well as information on placement options upon discharge from Baddour. To address this need, The Center aims to compile and disseminate information to family members or guardians who expressed an interest in learning more about future planning. In an effort to encourage family members to begin the future planning process early, all new applicants are now required to complete The Baddour Center Future Planning Questionnaire prior to their admission. Through educating and assisting family members in establishing future care plans, The Center hopes to improve communication between family members and staff and to enhance the quality of care provided to its residents.
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Goodman, D. M. (1978). Parenting an adult mentally retarded offspring. Smith College Studies in Social Work, 48, 209-234.
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For further information, including information about the BCFPQ:
The Baddour Center
P.O. Box 69
Senatobia, MS 38668