EMPLOYMENT PROFILES IN NEUROMUSCULAR DISEASES

Consumer and rehabilitation provider factors that might limit employme nt opportunities for 154 individuals with six slowly progressive neuro muscular diseases (NMD) were investigated. The NMDs were spinal muscul ar atrophy (SMA), hereditary motor sensory neuropathy (HMSN), Becker's muscular dystrophy (BMD), facioscapulohumeral muscular dystrophy (FSH D), myotonic muscular dystrophy (MMD), and limb-girdle syndrome (LCS). Forty percent were employed in the competitive labor market at the ti me of the study, 50% had been employed in the past, and 10% had never been employed. The major consumer barrier to employment was education. Other important factors were type of occupation, intellectual capacit y, psychosocial adjustment, and the belief by most individuals that th eir physical disability was the only or major barrier to obtaining a j ob. psychological characteristics were associated with level of unempl oyment. However, physical impairment and disability were not associate d with level of unemployment. There also were differences among the ty pes of NMDs. Compared with the SMA, HMSN, BMD, and FSHD groups, the MM D and LGS groups had significantly higher levels of unemployment, lowe r educational levels, and fewer employed professional, management, and technical workers. Nonphysical impairment factors such as a low perce ntage of college graduates, impaired intellectual function in some ind ividuals, and poor psychological adjustment were correlated with highe r unemployment levels in the MMD group. Unemployment in the LCS group was correlated with a failure to complete high school. Major provider barriers to employment were the low level of referrals to Department o f Rehabilitation by physicians and the low percentage of acceptance in to the State Department of Rehabilitation. The low rate of acceptance was primarily attributable to the low number of referrals compounded b y a lack of counselor experience with individuals with NMD. Both consu mer and provider barriers may contribute to the lack of interest in ob taining a job.