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Employment in Neuromuscular and Other Diseases.

Research & Training Center/Neuromuscular Diseases, Department of Physical Medicine & Rehabilitation, University of California, Davis, and National Institute on Disability & Rehabilitation Research. Grant H133B80016 & H133B30026. February 1997.

This profile is, in part, a summary of a paper to be published in the American Journal of Physical Medicine & Rehabilitation: Employment Profiles in Neuromuscular Diseases.

The purpose of this study was to develop and compare employment profiles for spinal cord injury, arthritis, and six hereditary neuromuscular diseases. Objectives for the employment profiles were to determine: (1) degree and characteristics of unemployment, and (2) disabled consumer and rehabilitation provider factors that might limit employment. Disabled consumer factors included type of occupation, education, interest in employment, participation in public assistance programs, and perceived reasons for unemployment. Provider factors included consumer awareness of and attitude towards a state vocational rehabilitation agency, degree of referral to, acceptance and closure by the state agency, and vocational counselor and physician attitudes toward individuals with the three disorders.

Methodology.

Methodology consisted of questionnaire surveys of ambulatory patients from a regional teaching hospital, California Department of Rehabilitation (DR) counselors, and regional physicians, and reviews of DR caseload files. The target area was one DR district, the Sacramento/Chico district, in which the regional teaching hospital was located. Forty-four individuals with paraplegia and quadriplegia secondary to spinal cord injury (SCI), 30 persons with rheumatoid arthritis (RA), and 162 individuals with slowly progressive neuromuscular diseases were evaluated and compared. Neuromuscular diseases (NMD) included spinal muscular atrophy types II and III (SMA), hereditary motor sensory neuropathy (HMSN), Becker's muscular dystrophy (BMD), facioscapulohumeral dystrophy (FSH), non-congenital myotonic muscular dystrophy (MMD), and limb-girdle syndrome (LGS). Details of the methodology are reported in Fowler et al(9), including impairment and disability evaluations in the individuals with NMD.

Gender, Age, and Disease Duration.

As can be seen in Table 1, there were significant gender, age and disease duration differences among the three groups. Individuals with RA were older than those with SCI and NMD while subjects with NMD had a longer disease duration than those with SCI and RA. A major reason for this difference is that SCI is a one-time non-progressive event with the age of injury occurring primarily in younger individuals (27) Arthritis and NMDs are progressive with a variable age of onset. Impairment and disability increase with increasing age in both arthritis (20) and NMDs (1,2, 8, 12, 13, 21, 22). There was also a gender difference. Females predominated in the RA group and males in the SCI and NMD groups. This would be expected since there are twice as many women as men in RA (20), 80% or more males with SCI (27), and 60% males with the six NMDs (1,2,8,12,13,21,22). Five individuals with SCI, eight with NMD and one with arthritis were full-time homemakers. These individuals were excluded from the rest of the study since the emphasis was on employment in the competitive labor market.

TABLE 1 - AGE, DISEASE DURATION, AND GENDER.   D

Employment Differences.

The NMD group (70%) had a far higher percent of employment at the time of the survey than the SCI (18%) and RA (10%) groups (Table 2). However, more individuals with RA (89%) and SCI (74%) had been employed in the past than those with NMD (50%). Ten percent of the NMD group, 8% of the SCI group had never been employed. All RA individuals had been employed at some time. There was no association between gender and employment status which is consistent with a national survey of individuals with all types of disabilities (14). Twenty-four percent of the NMD individuals employed at any time, 20% of those with SCI and 10% of the RA individuals were or had been employed part time. Eleven to 13 percent part time employment has been reported in national surveys (14, 19).

TABLE 2 - EMPLOYMENT STATUS. Number of Individuals Currently, Previously, and Never Employed.   D

   -Employed in Past

   -Never Employed

   -Total Unemployed

A comparison, however, between disorders or between the results in our study and other studies should be reviewed with caution. Employment rates in all diseases show marked fluctuations. Since study populations vary greatly in age and/or disease duration, education, and the severity of impairment which is related to age and age at the time of injury.

Another major problem with employment studies is attempting to identify a single employment rate at the time of the study, and it is probably more valid to evaluate employment rates as a function of key sample characteristics, such as time since injury (16). In addition, in SCI, changes in adjustment to impairment vary between cross-sectional and longitudinal studies (17). An example of this problem can be seen in our study. While there was a marked difference in current or past employment between the three disorders, there was no significant difference between groups in employment at any time; 90% NMD, 95% SCI, and 100% RA. This slight difference, however, is reflected in total length of time employed. Sixty-two percent of the RA group (100% employment at any time) were working or had worked for six or more years as compared to 55% in the NMD group and only 36% in the SCI group. Fifty-four percent of the previously employed individuals in the NMD group had been unemployed for six or more years as compared to only 34% in the SCI and RA groups.

Unemployment significantly increased with injury duration in the SCI group, depending on type of occupation. The latter is probably related at least in part to the increase in severity of impairment with age. While the current employment level of the SCI group was within the wide range of 13 to 65% post injury reported in the literature (3,16, 20,24,30), it was at the low end. A possible reason is that one-half of the SCI group were quadriplegics. However, while some studies have found lower employment rates among quadriplegic persons (6,27), other investigations failed to show any relationship (15,16). The major reasons are probably age related, since younger age and younger age at injury have been found to be correlated with employment status in SCI (6,16).

The employment level of only 10% in the RA group was well below the 43 to 45% reported in other studies (4,26). While the individuals with RA were older than those in the SCI and NMD groups, there was no age or disease duration association with employment.

The forty percent of individuals with NMD employed at the time of the survey was slightly higher than the 31 to 33% of employed work disabled individuals reported in national surveys (14,19). However, unemployment increased with age depending upon the type of occupation, which is consistent with a national survey (14), and is probably related to the increase in severity of weakness with age in individuals with NMD. There was also a significant disease-employment association between the six types of NMD (9). A comparison of the results from all of the NMDs combined in this study with other investigations was not possible, since previous reports were restricted to FSHD (31,34). Fifty-six percent of the FSHD individuals in this study were currently employed as compared to 44% in the Dutch (34) and 84% in the French (31) reports. Only 12% of the individuals with MMD in the Quebec study (25) were currently employed, as compared to 31% in our study.

Consumer Factors Related to Decreased Employment.

Occupations: Occupations for employed Americans with work disabilities are different from non-disabled workers since there is a slightly lower percentage of professional/management/technical workers and a higher percentage of skilled craftsmen and unskilled laborers in disabled workers (14,19). Type of occupation is considered to be a major barrier to employment. Unemployed disabled individuals who want to and believe that they are able to work cite low-paying jobs and the lack of education, training and skills needed for full-time work as a major cause of their unemployment (19).

The distribution between occupations, regardless of employment status, within each of the three disease groups was relatively equal (Table 3). Unemployment changed this profile depending on the type of disease and the type of occupation. Overall, however, occupation clearly affected employment with the highest levels of unemployment in the less skilled and trained workers. There was no association between employment and type of disease in service/clerical/sales, and industrial related jobs in any of the disease groups, and no association between employment status and gender in any of the occupational categories.

TABLE 3- TYPES OF OCCUPATIONS. Number of Individuals Currently and Previously Employed.   D