The health and quality of life consequences of not having access to timely, appropriate health care for individuals with disabilities is not well understood. We selected a total of thirty "access-stressed" individuals with spinal cord injury (SCI), multiple sclerosis (MS), or cerebral palsy (CP) from a group of participants in a longitudinal survey (N=488 ), based on difficulties they reported in getting access to at least three of five health care services (primary and specialty care, rehabilitation and mental health services, and durable medical equipment). We conducted in-depth telephone interviews which were audio-taped, transcribed, summarized using topic-content delineation methods, and coded with QSR Nvivo software for qualitative analysis. Perceived barriers to care included: lack of timely appointments and disability-specific knowledge among providers; lack of reliable transportation; limited and inadequate health plan benefits for durable medical equipment and physical/occupational therapies; and inaccessible facilities. We selected two case studies to illustrate how delayed or unmet health care needs can result in a "pile-up" of sequential events: such as the need for additional health services (hospitalization, emergency room visits, rehabilitation and mental health services) and a more dependent daily life (loss of participation in work, school, leisure and home life roles, increased dependence on family members for personal assistance, and increased stress and depression for the individual and the family). Findings suggest ways to modify health plan benefits and service delivery practices to improve health and quality of life for individuals with SCI, MS, CP and others with serious, complex health care needs. See www.nrhchdr.org
Learning Objectives: 1. Identify five key access barriers to health care for working-age individuals with SCI, MS and CP. 2. Describe how denied or delayed access to needed health care has a sequential, cascading effect on the health and well-being of these individuals. 3. Articulate how health plan benefits and service delivery practices can be modified to improve the health and well-being of these individuals, and by extension, to others with serious, complex health care needs.
Keywords: Disability, Health Care
Presenting author's disclosure statement:
Organization/institution whose products or services will be discussed: None
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.
Handout (.ppt format, 514.5 kb)
The 129th Annual Meeting of APHA