The Intersection of Personal Assistance Services and Transition Outcomes in Neuromuscular Disease

Abstract

Striking disparities exist in higher education and employment rates between young adults with disabilities and their non-disabled peers. This qualitative study examined the lived experiences of nine young adults ages 24-35 with neuromuscular disease and how their use of personal assistance services (PAS) impacted their pursuit of higher education and employment. Participants overall had positive college experiences and reported the easiest time coordinating PAS was during college. Families of participants expected college attendance, but the lack of experience with PAS prior to college impacted higher education; the need for PAS influenced choice of college. Participants used consumer-driven and agency based models, experienced great stress coordinating PAS, experienced low quality and high turnover of staff, were restricted in their ability to be spontaneous, and at times limited their needs to avoid asking for assistance. A significant amount of informal caregiving from family and friends was used to support higher education and employment. Participants speculated that societal stereotypes and low expectations of people with disabilities contribute to low rates of employment and higher education, and reported negative interactions with vocational rehabilitation counselors. Eligibility criteria for federal and state PAS programs limited income and created work disincentives, were complex to understand and navigate, and discouraged both advancement in their careers and the willingness to pursue advanced degrees. Young adults with neuromuscular disease are willing, wanting, and capable to participate in higher education and gainful employment and could not do so without access to reliable quality PAS. Efforts to prepare families and youth to fund and coordinate PAS, eliminate work disincentives, and coordinate transition planning between multiple support agencies could help break the cycle of poverty in the disability community and encourage employment.