Measuring Prevalence of Childhood Disability: Addressing Family Needs while Augmenting Prevention.

The impact of disability among children is significant for parents, schools and communities. Families need to plan for proper supports to ensure success for children with disabilities, and long term planning is necessary to insure full participation in community life, including employment, social, and recreational opportunities. Additionally, children with disabilities typically require more medical and rehabilitation services than children without a disability, therefore planning programs to assure access to health care is necessary (Newacheck & Halfon, 1998). Accurately assessing the prevalence of disability among children is critically important, but very challenging due to the variety of ways in which disability has been defined and measured, as well as the various survey techniques which have been employed in past studies.

Adler, Clark, DeMaio, Miller, and Saluter (1999) describe the efforts of the Social Security Administration to modify prevalence questions developed by the US Census Bureau, so that they could ascertain disability prevalence for children, as well as for adults, and additionally gather information on various disability domains, such as sensory, mental, or physical. As Adler et al. observe, if this type of data were collected nationally on a regular basis, the implications would extend beyond their use for a census. Critical matters concerning policy and program evaluation could be addressed by a cross section of agencies as more extensive information on changes in prevalence and on the characteristics of people with disabilities would be collected. Adler et al. commend the efforts of other organizations for their attempts to gather information in that manner, including the Social Security Administration's study on working-age disability and the National Study of Health and Activity, formerly the Disability Evaluation Study.

President's Task Force on the Employment of Adults with Disabilities. Screening tools to assess prevalence of childhood disability are more effective if they inform rehabilitation professionals regarding the possible services the children or their families might require. As Glascoe (1999) observes, while screening tests exist which have improved disability detection rates, they have not been optimal due to their length, or the difficulty in managing the children's behavior during testing. She cites, as an alternative, the need to elicit and carefully assess the concerns of the parents. Such concerns have been evidenced by research to be as valid as quality screening instruments (Glascoe, Altemeier, & MacLean, 1989; Glascoe, MacLean, & Stone, 1991). She also observes that half of all children with disabilities are not identified before school entrance, which prevents their participation in early intervention programs. This information could also have value in reducing high school dropout rates, increasing employment, delaying child-bearing, and reducing criminal behavior (Barnett & Escobar, 1990; Glascoe, Foster, & Wolraich, 1997; Gomby, Lamer, Stevenson, Lewit, & Behrman, 1995). Accurate assessment could provide needed information on specifics such as the interaction for parents and siblings; accessing quality rehabilitative services dealing with both social as well as educational goals; and adequate accessing of health care needs to ensure that rehabilitation is maximized. Measures of access to health care services, their cost effect, and preventive/educational programming are vital for children with disabilities, not only to address the medical and rehabilitation needs of the child, but to ensure the viability of the family structure in which s/he is reared. Such an approach subsumes the longevity and societal integration of the child under its rubric, as well as the rehabilitation and normalization of the child's family members in preserving the integrity of their relationships.

Specifically, information on the nature of parent-child interactions, the mutual support systems between parents, the community support network, and their collective impact on the child's functional status and community integration should be available. While some information is available regarding non-disabled parents and their disabled children, relatively little has been published regarding disabled parents who have children with disability. Regarding non-disabled parents, Frey, Fewell, and Vadasy (1989) found a significant association between the father's adjustment to the child's disability at the start of observation, the mother's adjustment to the child's disability three years later, and the child's daily living skills and social competence three years later. Additionally, the study found higher levels of both parents' adjustment to be significantly associated with having a female with a disability as opposed to a male. This finding was in contrast to the study of Sloper and Turner (1993) who found that good paternal adjustment was associated with the child being male. Frey et al. suggest an emotional reciprocity between parents, which is largely dependent on the role of the father.

The husband/wife as well as parental roles also affect the amount of stress a family has in regard to having a child with disability. Brinchmann (1999) characterizes the nature of the parental stress to be in part due to the ambivalences they share over having a child with a disability. Feeling that the child will remain overly dependent on them predicates feelings of frustration regarding what they may perceive as an unchangeable situation. Yet the same intensity of caring for such a child often engenders exceptional degrees of affection or devotion. Larson (1998) reinforces Brinchmann's views by observing that a parent can vacillate between loving the child in the state they're in, while wanting to eradicate the disability. Moreover, Larson observes parents struggling with the issue of the incurability, while at the same time remaining hopeful for the future of the child as they actively pursue solutions which the community can offer. Those conflicts are likely to foster significant stress. Validly and thoroughly measuring stress therefore becomes important to parents and family members, not only in terms of managing their personal lives, but to ensure adequate access to psychosocial, educational, and health related services. Assessing levels and nature of familial stress consequently becomes paramount if a family is to successfully cope with having a child with a disability and ensure the child's integration with society. Conceptualizing and operationalizing what is meant by "disability" compounds the difficult but necessary task of developing measures for these critical issues.

To assess the impact of disability among children within a state, valid and cost-effective methods of gathering information are needed. Telephone surveys such as the Behavioral Risk Factor Surveillance System (BRFSS) are used in all fifty states to measure health conditions and behaviors among adults. Modified versions have been used to measure similar variables in the adult population possessing either physical or developmental disabilities (Verbrugge, Merrill, & Liu, 1999). The feasibility of using a similar telephone survey to describe issues in childhood disability through adult interviews was examined by the State of Kansas Disability and Health Program. Specifically, we sought to answer the questions:

* What is the prevalence of childhood disability in the state of Kansas?

* What is the prevalence of childhood disability by specific type of disability?

* Is reported parental self-perceived health and life satisfaction associated with the presence of disabled children or with the reported type of disability?

Method

Participants

Prevalence was estimated by assessing the number of children with a disability. For comparisons between families by type of disability, the household as a unit was used. A randomized telephone survey was utilized. This telephone survey was conducted using a simple random digit sampling method. Area codes and prefix listings in use in Kansas during 1997 were obtained through the Southwestern Bell Corporation. Using this six digit number (area code and prefix), a random sample of all possible telephone exchanges in Kansas was generated. The six digits were then assigned all possible four digit suffixes, from which a randomly selected sample was obtained for use in the survey. Prescreening of the sample at the state level was conducted to eliminate businesses, institutions, and non-working exchanges. Potential working telephone numbers were dialed during three separate calling periods (daytime, evening, and weekends) for a total of 15 call attempts before being replaced. Upon reaching a valid residential number, one household member aged 18 or older was randomly selected using the Kish respondent selection procedure (Kish, 1965). This selection process cross-referenced the last digit in the telephone number with the number of adults in the household to eliminate potential over sampling and bias in the sample. If the selected respondent was not available, an appointment was made to call at a later date. If the selected adult could not be reached during the survey calling period or refused to participate on three separate occasions, that telephone number was replaced with another randomly selected number.

Participants' rights were protected by the Institutional Review Board of the state health department: interviewers had only participants' phone numbers, not their names. The phone numbers were kept until a subsample of respondents were called back for validation purposes. The interviewers received training on survey procedure, including handling refusals, and were monitored by the survey supervisor. An "800" number was provided for any respondent who wished more information on the survey, such as wishing to confirm its authenticity. These calls were handled by the survey supervisor. A total of approximately 3300 participants were interviewed.

Instrumentation

Interviews were conducted through the state's special disability BRFSS. This was a pilot questionnaire developed using the state's general BRFSS questionnaire for chronic disease as its prototype. This special BRFSS was primarily directed at adults with disabilities, ages 18 and over. As such, only one section with questions pertaining to children was used to gather the information used for this study.

Prevalence of childhood disability was determined by asking three questions:

1) "Thinking about the children in your household under the age of 18, how many need services or treatment for a health problem beyond what is needed for most children their own age?"

2) "Thinking about the children in your household under the age of 18, how many have problems or delays in physical development, speech/language development, or difficulties doing activities that are normal for other children their own age?"

3) "Thinking about the children in your household under the age of 18, how many regularly take prescription medication, require a special diet, or use assistive devices due to a health condition?"

The face validity of these questions was predetermined to be good. These questions were formulated after consultation with other professionals within the state health department, including the bureau director for children and family services who had been a member of a national panel for survey questionnaire development. A literature review was conducted (McManus, 1997; Stein, Bauman, Westbrook, Coupey, & Ireys, 1993; Stein, Westbrook, & Bauman, 1997) to see how type of disability had been conceptualized -- as well as possible dimensions. Prototypes of the questions were then asked of parents with children having disabilities prior to their implementation in the survey to see if the parent responses matched the child's disability by type. The original set of questions did not sufficiently capture children with the problems or delays described in question 2, so that question was modified as stated above. The modified question was judged to be satisfactory.

The level of parental stress was measured by how household respondents rated their self-perceived health and life satisfaction. The general BRFSS, from which these measures were taken, has established that self-ratings of health and life satisfaction have been valid indicators of health status and quality of life across states (Hennessy, Moriarty, Zack, Scheer, & Brackbill, 1994). Prevalence estimates of disability were obtained by analysis of individual questions as well as grouping the three questions to derive a single estimate of the prevalence of children with a disability.

Data were also examined by cross tabulation and stratified analysis to determine differences between households where the adult respondent had a disability compared to those households where the respondent did not. Disability, in this context, was established by one of three criteria: respondents were asked if they had any activity limitations due to an impairment or health problem; they were asked if an impairment or health problem kept them from working; or they were asked if they used any assistive devices, such as a wheelchair, cane, braces, or prosthesis. If they answered "yes" to any of these questions, they were identified as a person with a disability. These criteria questions were taken from the general BRFSS disability and health core, and have demonstrated a high degree of validity when measuring disability by limitation or restriction in daily or work activity (Verbrugge et al., 1999). The BRFSS, when administered by phone across a number of states, has demonstrated a high degree of reliability for monitoring chronic disease prevalence (Stein, Lederman, & Shea, 1993; Stein, Courval, Lederman, & Shea, 1995). The data were collected in the fall of 1997 and analyzed over a two year period.

Data Analysis

Data were entered into Epi Info, Version 5 for statistical analysis. For comparisons with large cell sizes, chi-square analysis employing the Yates correction was utilized.

Results

Of the total sample of 3,297 respondents, 1,212 (36.8%) were in households with one or more children under age 18. 137 (11.3%) of the households had at least one child needing services or treatment beyond those needed by other children their age. When examined by the number of children, of 1,896 children in all households, 165 (8.7%) were in need of extra services or treatment. There was no apparent statistical difference or trend in prevalence estimates when examined by respondent demographics (gender, age, marital status, or education). Income and employment could not be analyzed, as those questions were asked only of those adults who identified themselves as having a disability.

Of 1,206 households with children, 93 (7.7%) contained children with either delays in physical or speech/language development, or who were unable to conduct activities which would be normal for children their age. Of the 1,896 children in these households, 106 (5.6%) were delayed in development or had difficulty conducting age-appropriate activities. Of 1,209 households with children, 173 (14.3%) had children regularly using prescription medicines or assistive devices, or who needed to follow a special diet. Of 1,896 children, 203 (10.7%) demonstrated these needs.

520 of 3,033 respondents met the aforementioned criteria and were classified as adults with a disability. As indicated in table 1, of these respondents with a disability who lived in a household with children, 19.8% of the households contained one or more children needing extra services or treatment; 16.7% contained one or more children with speech or language delays or activity limitations; and 30.1% contained one or more children needing special diets, assistive devices, or prescription medicines. Among households where the respondent did not have a disability, the percentages were lower, at 9.8%, 6.9%, and 12.8%, respectively.

Table 1

Prevalence of Kansas childhood disability by type of disability
and disability status of parent.

Parent disability status.          Percentages of
                                   households with one
                                   or more children
                                   needing extra services
                                   or treatment,

Households having children and             19.8%
a parent with a disability.

Households having children with

a disability and a parent
without a disability.                       9.8%

Parent disability status.          Percentages of
                                   households with one
                                   or more children
                                   with speech or
                                   language delays or
                                   activity limitations,

Households having children and             16.7%
a parent with a disability.

Households having children with
a disability and a parent
without a disability.                      6.9%

Parent disability status.          Percentages of
                                   households with one
                                   or more children
                                   needing special diets,
                                   assistive devices, or
                                   prescription medicines.

Households having children and              30.1%
a parent with a disability.

Households having children with
a disability and a parent
without a disability.                       12.1%

As illustrated in table 2, differences in ratings of self-perceived health and life satisfaction were observed for adults living in Kansas households with children with a disability. For adults in households where children need extra services, 25.6% rated their health as fair to poor while 9.9% rated it as very good to excellent. 10.9% were very satisfied or satisfied with their lives, as opposed to 19.7% who were not. Among those adults who lived with a child needing a special diet, assistive devices, or medications, 34.4% ranked their health as fair to poor, versus 13.8% who rated it very good to excellent. 13.9% were satisfied with their lives; 30.4% were not. The differences between self-perceived health or life satisfaction were smaller in households where a child had physical or language delay or activity limitation. 14.7% of these adults ranked their health as fair to poor, as opposed to 6.7% who rated their health as very good to excellent. 7.4% said they were satisfied with their life, as opposed to 11.7% who said they were not. Using a z test, there was a significant difference between adults living with a child needing a special diet, assistive device, or medication who ranked their own health as fair to poor (34.4%), and those adults living with a child who had a physical or language delay or activity limitation who ranked their health as fair to poor (14.7%), (p [is less than] .05).

Table 2

Differences in ratings of self-perceived health and life
satisfaction for adults living in Kansas households with
children who have a disability.

                     Percentage of adults     Percentage of adults
                     rating their health as   rating their health to
                     fair to poor.            be good to excellent,

Households where             25.6%                     9.9%
children need
extra services.

Households where             34.4%                    13.8%
children need a
special diet,
assistive devices,
or medication.

Households where             14.7%                     6.7%
children have a
physical or
language delay
or activity
limitation.

           Adult rating of self-health and life satisfaction

                     Percentage of adults     Percentage of adults
                     who are satisfied with   who are not satisfied
                     life.                    with life.

Households where             10.9%                   19.7 %
children need
extra services.

Households where             13.9%                    30.4%
children need a
special diet,
assistive devices,
or medication.

Households where              7.4%                    11.7%
children have a
physical or
language delay
or activity
limitation.

Of households with children, a greater proportion of children with a disability lived in a household where there was also an adult with a disability. Among 103 adults with a disability, 42 (40.8%) had children with a disability versus 206 (18.6%) among 1,108 respondents who were not disabled. Parents without disabilities but having a child with a disability were twice as likely to report their health and quality of life as fair to poor, as their parental counterparts with normal children (odds ratio = 2.1, 95% confidence interval: 1.1, 3.0). There were no significant differences, however, for parents with disabilities whose children were or were not disabled (odds ratio = 1.4, 95% confidence interval: .55, 3.4).

A summary estimate of the number of households containing children with disabilities was obtained by grouping positive responses to the three questions used to define disability among children. Of 1,212 respondents, 248 (20.5%) were in households where there was at least one child meeting this definition. Thus, roughly one out of five Kansas households would appear to have a child with a disability.

The results may be summarized as follows:

1) General ratings of self-perceived health and life satisfaction were higher for adults living with children who had physical or language delays or activity limitations as opposed to adults living with children who were in need of special diets, assistive devices, or medication.

2) Adults not possessing a disability but living in a household with a disabled child rated their self-perceived health and life satisfaction lower compared to adults with a disability living in a household with a disabled child.

Discussion

The disability prevalence rates yielded in our study reflect those of a national survey estimate of childhood disability (Newacheck & Halfon, 1998). Both surveys reflect a relatively high disability level. In assessing the brief children's section of the Kansas telephone survey, it would appear that more detailed information is indicated to adequately address specific issues related to childhood disability. These include the prevention of primary and secondary disorders related to that disability, and the behavioral and family dynamics surrounding children with disability.

Studies have revealed the prevalence of disability to vary by demographic and socioeconomic characteristics of the families surveyed (Haggerty, 1983; McNeil, 1993; Newacheck & Halfon, 1998; Pless, 1994). Older children, boys, children from poor families, and those from single- parent households have demonstrated higher prevalences of disability (Newacheck & Halfon). Our study revealed no apparent differences in trends of prevalence estimates based on these demographic variables. However, one should consider that our data represent a state relatively homogeneous in its population (i.e. rural, white), whereas data in the former study represent a national cross-section. Further stratification of our data by metropolitan statistical analysis failed to show any difference in trend.

As the educational level of respondents increased, fewer households emerged with children having physical or language delays or difficulty in conducting activities considered normal for their age. While this current trend for Kansans did not reach statistical significance, lack of education, money, employment, single parenting, gender of the child, and the child's type of disability can contribute to perceived stress and family tension.

Adult respondents not possessing a disability but living in a household with a disabled child were found to be more likely to rate their self-perceived health as fair to poor compared to adults with a disability having a disabled child. Such a finding may be due to the latter group developing some sort of support network, coping skills, or group of resources unknown to the former. Wortman and Dunkel-Schetter (1979) rank adequacy of the social network as critical for parental adjustment. Adequacy, as they define it, would refer to satisfaction with support, rather than the amount. It is therefore necessar-y to understand how better quality, of support to families who have children with disability is effected, rather than simply focus on quantity. Such an understanding implies how stress is viewed. Stress may best be viewed as a breakdown between person and environment.

These observations can be applied to the significant others of people with disabilities, especially when considered in the context of the parents with a child with disability. If the parents, as well as the child are to be integrated with the environment, it is necessary to comprehend what the barriers are to this integration, and how they can be overcome. If our finding pertaining to the better quality of life reported by parents with disability is attributable to their developing more adequate social networks, coping skills, and personal resources, one must explore how such networks, skills, and resources are developed.

Turner and Beiser (1990) have found life stress to be associated with major depression in the population with disability, whereas such stress is not observed to contribute to major depression in those without disability. Additionally, they found such stress to be associated with depressive symptomatology in the population with disability. Such stress can create a breakdown between person and environment, especially if it creates conditions of depression for those with disabilities, or those on whom they depend. Turner and Beiser make the additional point that personal and social resources can moderate the impact of stress on depression as a result of disability. Since people with physical or developmental disability have to cope with daily stress, so do the parents of the child with disability. Hence, surveillance should attempt to measure what constitutes coping behavior for either those with the disability, or for those who are their significant others.

Coping and stress management can contribute greatly to quality of life. Folkman (1984) examines coping in health-related contexts. She cites Cohen and Lazarus (1979), who emphasize two contributors to successful coping with chronic illness: "reducing harmful environmental conditions" (social or physical), as well as "tolerating or adjusting to negative events and realities" (p. 232). The support networks and coping skills parents with disabilities can develop by virtue of their own experiences can lead to reduction of adverse social conditions, and increase their adjustment to negative realities.

Gallagher and MacLachlan (1999) describe barriers to adjustment in disability coping which can have particular relevance for parents with disabled children. These barriers include social isolation and less psychological resilience. To reduce the stress we observed which appeared to be associated with the type of child disability, an initial step would be to examine the degree to which parents exhibit psychological resilience, and under what conditions, including those which pertain to the child's type of disability and the specific stresses it induces. If specific effective coping mechanisms can be identified, or associated, with certain stressful conditions, resilience can be enhanced.

Folkman (1984) makes further reference to Cohen and Lazarus (1979), who recommend that people who suffer from chronic illness be allowed "to continue satisfying relationships with others" (p. 232). Development, as well as continuation, of such relationships for parents with children who have disabilities is vital, if parents are to adjust and successfully cope with the new situation of having such children. Development of these relationships will reduce social isolation. Access to parent support groups, as well as increased home and community-based services, can enhance social facilitation, as well as result in increased tolerance of everyday negative realities.

The concept of self-determination emphasizes a point which Gallagher and MacLachlan (1999) stress: that coping goes beyond problem solving or seeking support. They cite Aldwin (1990) who observes that individuals widely differ in their reactions to stress, as well as its resolution. If one is going to meaningfully address how to overcome barriers between the person and the environment, one must acknowledge individual differences in how problems are overcome, a process which reinforces the basic tenet of the consumer model.

As Kansas disabled parents of children with disabilities rated themselves higher on questions of self-health and life satisfaction than non-disabled parents of children with disabilities, it could be useful to investigate what was sustaining about the former group's coping resources. Turbiville (1997) indicates that parents of children with disabilities can benefit greatly from mutual support. Specifically, she observes that for these parents who do not have disabilities themselves, having a disabled child is usually a new experience for a family. Moreover, she observes that such an experience can create feelings of pessimism for the child's future. Turbiville points out that parents with disabilities can draw from their own experiences to create a more viable life for these children. In turn, these parents can take this experience and influence other parents who do have this perspective.

Perrin et al. (1997) call for health care professionals to scrutinize and monitor the various domains central to the health of families whose children suffer from chronic conditions. When considering self-determination in the management of stress, respite care can be a major resource in assisting parents to cope. Abelson (1999), along with Brinchmann (1999) and Faulkner (1999), emphasize the importance of respite care and its association not only with effectively helping parents to manage stress, but in contributing to the developmental outcome of the child. Faulkner refers to the prohibitive expense of seeking such care. Brinchmann cites too little rest and sleep for the parents, as well as feeding the children, as the most serious problems associated with living with a child with a severe disability. Abelson explored how a lack of availability of respite care affected the careers of 574 parents having children with disabilities. Among such parents, a relationship was observed between the severity of the disability and the parents' missing hours of work or passing up occupational opportunities. It should be added here, that this type of process can eventuate in a vicious cycle: the less time the parents have to pursue their careers can increase their strife and undermine their ability to care for their child. With this undermining, can come an exacerbation of the child's disabling condition. Abelson calls for "advocating more available and accessible respite services, as well as more in-depth studies of the cost effect of respite care on parental income and career progression" (p. 880).

The issues confronting familial adjustment to having a child with disability are myriad. The complex and extremely sensitive nature of helping parents not only adapt to the child, but, moreover, adapt to the roles they play and the relationships they have to each other demand increasing scrutiny. It is important for both rehabilitation and other health care professionals to begin evaluating these issues together. Unless these issues are examined in greater depth, one will never have adequate prevention of secondary conditions, such as depression. Quality as well as quantity of services, along with adequate stress management, will define how effective our interventions have been, not only in terms of preventing secondary conditions, but in recognizing that disability and health are not mutually exclusive.

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David Ehrenkrantz
Corinne Miller

Kansas Department of Health & Environment

Dee K. Vernberg
Michael H. Fox

University of Kansas

David Ehrenkrantz, Dr.P.H., Epidemiologist, Injury and Disabilities Programs, Bureau of Health Promotion, Kansas Department of Health & Environment, Mills Building 109 SW 9th Street, Suite 602, Topeka, KS 66612-1271. Email:[e-mail]