ABSTRACT
Background: Autistic adults have high rates of co-occurring health conditions, suicide, and premature mortality, yet often experience health care barriers and poor health outcomes. A better understanding of the health care needs and experiences of autistic adults is essential for improving the health care system and patient experience. Methods: This study examined the perspectives of autistic adults regarding their health care experiences in primary care and other settings and their suggestions for improvement using both qualitative and quantitative methods. Twenty autistic adults (aged 18-35 years, 65% male) completed surveys and individual semi-structured interviews. Results: Qualitative data analysis results revealed 10 subthemes across 3 overarching themes: (1) system- and clinic-level factors affect access to care, (2) aspects of the clinic environment affect health care experiences, and (3) provider knowledge and practices affect health care experiences. Within the first theme, participants described barriers to obtaining services, including scheduling logistics, costs and inadequate insurance coverage, and transportation barriers. The second theme focused on aspects of the clinic environment that participants found especially relevant to their health care experiences and that required specific accommodations. This included sensory input, anxiety-provoking situations and procedures, and wait time. Within the third theme, participants emphasized aspects of providers' care that affected their health care experiences. Key factors included provider knowledge about autism, communication, rapport, and individualized care and patient-provider partnerships. Conclusion: Overall, the findings point to a need for provider training and improvements to the health care delivery system to better meet the unique needs of autistic adults.
Why is this an important issue?: Receiving good health care is important for health and well-being. Understanding autistic adults' perspectives on their health care experiences will help identify ways that health care services can be improved to better meet their needs and preferences in the future. What was the purpose of this study?: The purpose of this study was to learn from autistic adults about their health care needs, experiences, and suggestions for improvement. What did the researchers do?: The researchers asked autistic adults in the United States to complete a survey and participate in an interview over Zoom. The survey and interview questions asked about their experiences receiving health care services and suggestions for how to improve health care services for autistic adults. What were the results of the study?: Twenty autistic adults between the ages of 18 and 35 years participated in this study. Most participants were men (65%) and most were White (75%). The participants shared many important insights about their primary health care experiences and experiences in other health care settings. The results fell into main "themes" or ideas that people had in common. These themes are not listed in any particular order. Autistic adults described many factors that make it hard to access to care, such as getting an appointment, finding transportation, or paying for health care. They explained that the clinic environment needs to be better suited to their needs, such as having a quiet place to wait or sensory accommodations. Participants wanted their doctors to know more about autism and to be able to connect and communicate with them. They also wanted their doctors to partner with them to make sure their health care treatment plan is acceptable and understandable. What do these findings add to what was already known?: These findings show that autistic adults in the United States face many barriers in receiving health care. Some recommendations for improvement may be helpful for all patients, such as being able to book appointments online or having a doctor who does not rush you. Other improvements need to be tailored to the unique needs of autistic patients, such sensory accommodations or autism training for doctors and clinic staff. What are potential weaknesses in the study?: Because the study was small and only included adults who were able to share about their experiences during an interview, these results may not apply to all autistic adults. Another limitation is that the study was designed and carried out by non-autistic (allistic) researchers, who have different perspectives from autistic people. We asked participants to help us interpret our findings to help address this limitation. How will these findings help autistic adults in the future?: The insights from this study provide a lot of recommendations about how health care services can be improved to better meet the needs and preferences of autistic adults in the future.
ABSTRACT
Importance: In 2020, Michigan Medicaid implemented a new work requirement policy for enrollees in the Healthy Michigan Plan (HMP), the state's expanded Medicaid program. Under the policy, enrollees would be required to report 80 hours of work or other qualifying activities each month or obtain an exemption to maintain health insurance coverage. Objective: To assess the experiences of health navigators (and beneficiaries by proxy) with the implementation of Michigan's Medicaid work requirement. Design Setting and Participants: This qualitative study included health navigators who participated in 11 focus groups from September to December 2020. Focus group questions addressed topics related to implementation and communication of the HMP work requirement policy. A survey was administered to capture background information, assess readiness to assist with navigation, and assess the quality of the state's communication about the policy. Main Outcomes and Measures: The main outcomes were general understanding of policy components, communications about the policy, navigation of the exemption process, navigation of the reporting process, and beneficiaries' ability to comply with the policy. Results: Of 50 health navigators who participated in the focus groups, 44 (88.0%) responded to the survey and 43 provided demographic information (mean [SD] age, 44.0 [10.5] years). All 43 had at least some college or vocational education, with 27 (62.8%) reporting a 4-year degree or higher, and they resided in geographic regions across Michigan. Navigators indicated that they felt prepared to assist HMP enrollees navigate work requirements. Communication to beneficiaries regarding the new policy was viewed as an improvement compared with traditional Medicaid communications. However, the complex policy was potentially difficult for beneficiaries to understand. Limited language options besides English created barriers for some enrollees. Exemptions were confusing for beneficiaries owing to the numerous categories and sometimes vague guidelines. Those who used the online reporting system generally found the platform to be user-friendly. Navigators expressed concern regarding HMP enrollees' ability to report compliance with work requirements owing to barriers with internet access, telephone access, language challenges, and computer literacy. Conclusions and Relevance: In this qualitative analysis of health navigators in Michigan, respondents reported overall positive feedback about many of the implementation and communication strategies, including human-centered design, automatic exemptions, and use of state administrative data to assess whether beneficiaries were in compliance with the policy; however, barriers to reporting remained for enrollees. The findings suggest that state agencies should seek to reduce administrative barriers and apply a human-centered design approach to alleviate risk of unnecessary loss of Medicaid benefits.
