Perceptions of Health and Disability Among Service Providers in AL

PURPOSE: Data from Healthy People 2010 Midcourse Review is useful to compare health status of populations related to quality of life and disparities. Little is known about barriers to accessing health information and clinical services in AL. Study purposes were to build a database of health information and service needs among those with disabilities and to improve clinical service access. Project funders include the Alabama Council for Developmental Disabilities and the National Network of Libraries of Medicine.

METHODS: A collaborative research team representing diverse disciplines and settings formed two working groups to guide the project. Members included university researchers, service providers, students and consumers. Surveys were developed for 4 audiences: Individuals with disabilities, family/other caregivers, health profession students and service providers.

The focus of this program is on the final group. Surveys were available in alternate formats and included 27 items. Researchers activated social and professional networks to widely distribute surveys.

RESULTS: Service providers (N =135) revealed areas of strength and need related to health disparities among patients with developmental disabilities. Thirty-seven percent are physicians; 29% are therapists (PT, OT, SLP). Eight of 10 respondents reported understanding developmental disabilities, feel comfortable treating these individuals and believe they do so fairly.

Three-fourths refer these patients to specialists, when necessary. Two-thirds assist their patients or family caregivers to follow treatment recommendations and feel skillful as clinicians with this population. However, only half teach healthy behaviors (diet, exercise, hygiene) and access clinical resources for their patients with disabilities.

Four tasks were perceived as “very difficult” for these patients: understanding health insurance benefits, learning about agency programs and services, locating transportation to health care and finding a dentist. Accurate communication, resource availability, obtaining family support and coordinating care were often mentioned as treatment challenges. Providers desire additional continuing education opportunities to increase knowledge and skills.

Needs identified from surveys with all four groups will be prioritized for training modules. For instance, video modules and written information will assist caregivers to understand programs/services of AL agencies, understand health insurance benefits and communicate needs to health care providers. Training information for service providers may emphasize how to assist the individual with a disability to follow treatment, prevent illness and access valid sources of health information.