Community-based Service Programs Research Articles

Mental and Behavioral Health, and Crisis Services for People with Intellectual and Developmental Disabilities in Medicaid Home- and Community-Based Services.

People with intellectual and developmental disabilities (IDD) often have higher rates of comorbid mental health conditions compared to the general population. Yet, many people with IDD also have unmet needs for mental and behavioral health services. The aim of this study was to examine how states provided mental and behavior health, and crisis services to people with IDD in their Home- and Community-Based Services (HCBS) programs, the largest funding mechanism for Long-Term Services and Supports (LTSS) for people with IDD in the United States. We analyzed fiscal year (2021) Medicaid HCBS waivers for people with IDD from across the United States to examine if and how they provided mental and behavior health, and crisis services. States projected spending $968.9million for mental and behavior health, and crisis services for 190,299 people with IDD. Applied behavior analysis services were provided at greater rates than positive behavior supports and other forms of behavior interventions. While most states provided mental and behavior health, and crisis services in their waivers, there were vast inconsistencies in how they did so, across states, waivers, and services. HCBS are a crucial safety net to ensure people with IDD, especially those who also have mental health disabilities, can live and thrive in their communities.

Associations among drug acquisition and use behaviors, psychosocial attributes, and opioid-involved overdoses

AimsThis study sought to develop and assess an exploratory model of how demographic and psychosocial attributes, and drug use or acquisition behaviors interact to affect opioid-involved overdoses.DesignWe conducted exploratory and confirmatory factor analysis (EFA/CFA) to identify a factor structure for ten drug acquisition and use behaviors. We then evaluated alternative structural equation models incorporating the identified factors, adding demographic and psychosocial attributes as predictors of past-year opioid overdose.Setting and participantsWe used interview data collected for two studies recruiting opioid-misusing participants receiving services from a community-based syringe services program. The first investigated current attitudes toward drug-checking (N = 150). The second was an RCT assessing a telehealth versus in-person medical appointment for opioid use disorder treatment referral (N = 270).MeasurementsDemographics included gender, age, race/ethnicity, education, and socioeconomic status. Psychosocial measures were homelessness, psychological distress, and trauma. Self-reported drug-related risk behaviors included using alone, having a new supplier, using opioids with benzodiazepines/alcohol, and preferring fentanyl. Past-year opioid-involved overdoses were dichotomized into experiencing none or any.FindingsThe EFA/CFA revealed a two-factor structure with one factor reflecting drug acquisition and the second drug use behaviors. The selected model (CFI = .984, TLI = .981, RMSEA = .024) accounted for 13.1% of overdose probability variance. A latent variable representing psychosocial attributes was indirectly associated with an increase in past-year overdose probability (β = .234, p = .001), as mediated by the EFA/CFA identified latent variables: drug acquisition (β = .683, p < .001) and drug use (β = .567, p = .001). Drug use behaviors (β = .287, p = .04) but not drug acquisition (β = .105, p = .461) also had a significant, positive direct effect on past-year overdose. No demographic attributes were significant direct or indirect overdose predictors.ConclusionsPsychosocial attributes, particularly homelessness, increase the probability of an overdose through associations with risky drug acquisition and drug-using behaviors. Further research is needed to replicate these findings with populations at high-risk of an opioid-related overdose to assess generalizability and refine the metrics used to assess psychosocial characteristics.

Understanding community-dwelling older adults' preferences for home- and community-based services: A conjoint analysis

BackgroundOlder adults' preference for home- and community-based service programs has been highlighted as an essential but usually ignored ingredient in current care models. Disentangling how preferences contribute to older adults' decision-making could facilitate finding optimal ways to deliver home- and community-based services in times of increasing scarcity. ObjectiveTo identify Chinese community-dwelling older adults' preference structure for home- and community-based services and thus to optimize service provision. MethodsConjoint analysis, a preference-based technique, was employed to study older adults' preferences. A stepwise qualitative approach was first adopted to identify the attributes and attribute levels of home- and community-based services. Scenarios were defined through an orthogonal fractional factorial design, and a cross-sectional survey was conducted through a face-to-face, anonymous questionnaire. Conjoint analysis was performed to determine preference weights representing the relative importance of the identified attributes, and cluster analysis was performed to identify clusters of participants with similar preference structures. All data analyses were performed using SAS v9.4 and SPSS 22.0. ResultsA total of 321 of 350 invited participants completed the questionnaire. Four attributes were identified and used to create the conjoint scenarios: care-giving attitude, price, technical care-giving skills, and the type of service provider. Care-giving attitude was the most valued attribute for older adults when making decisions (relative importance score = 48.28), followed by price (relative importance score = 21.618), technical care-giving skills (relative importance score = 19.518), and finally, the type of service provider (relative importance score = 10.585). Three preference phenotypes were identified by applying cluster analysis: “price-oriented”, “comprehensively balanced”, and “attitude-oriented”. ConclusionThe present study underscored the importance of considering attributes valued by Chinese older adults in the design and delivery of home- and community-based services. The preference structure, including the utility score of the attribute levels, differs among older adults. The findings could inform future research and practice and suggest incorporating flexibility during the service delivery stage.

Describing providers’ perspectives on the needs and challenges of family caregivers of African American people living with dementia

ABSTRACT The primary purpose of this study was to explore the needs and challenges of African American family caregivers of People living with dementia (PLWD) from the perspective of service providers including healthcare and social service providers. The study conducted three online semi-structured focus group interviews with service providers (n = 15). Data were analyzed using Braun & Clarke’s guide to thematic analysis approach. Five themes emerged from the analysis of the focus group data: (i) Inadequate information about resources; (ii) Dementia education; (iii) Burden of dementia on families; (iv) Limited financial support and funding; and (v) Suggestions for needed resources. Service providers expressed the lack of community-based dementia service and support programs in African American communities. Findings from the study indicated the need to provide culturally appropriate information on dementia caregiving. This study adds to the scope of knowledge by exploring the processes of seeking help and using services.

Long-Term Outcomes of a Home- and Community-Based Services Program: Competing Risk Models

Purpose:The purpose of this study is to investigate the incidence of all-cause mortality, institutionalization, and condition improvement among participants of a state home- and community-based services program (HCBS).Methods:We evaluated the follow-up data of 11,444 individuals with disabilities aged 45–59 years at application who received services from the HCBS program from the state of Illinois. Statistical analysis was conducted using the cause-specific hazard and the subdistribution hazard regression models.Results:In all, 4,900 (42.8%) individuals died, 1,005 (8.8%) were institutionalized, and 1,980 (17.3%) improved at service closure. Males of older age, living with others, with a medical referral, a general physical debilitation, and receiving more service hours increased the risk of all-cause mortality. Middle-aged women with a physical orthopedic disability and a low number of service hours showed greater improvement.Conclusions:The risk of the outcomes was related to baseline characteristics, types of disabilities, and service factors. We also observed that demographic factors such as gender, race, and living arrangements affected the risks of the outcomes.

Exploring health promotion efforts for non-communicable disease prevention and control in Ghana.

Noncommunicable diseases (NCDs) are a growing public health challenge in Ghana. Health promotion can provide useful avenues to reduce the incidence of NCDs in the country. We used the Ottawa Framework to assess health promotion efforts for the prevention and control of NCDs in Ghana. Data were collected using key informant interviews and documentary sources. A content analysis approach was adopted for data analysis using Nvivo 11 Software. We found a strong policy framework for NCD prevention in Ghana with the ratification of several international protocols and resolutions and the development of national and specific NCD-related policies. Implementation of these policies, however, remains achallenge due to limited resources and the overconcentration on communicable diseases. Attempts have been made to create a supportive environment through increased access to NCD services but there are serious challenges. Respondents believe the current environment does not support healthy eating and promotes unhealthy use of alcohol. The Community-based Health Planning and Services (CHPS) program engenders community participation in health but has been affected by inadequate resources. Personal skills and education programs on NCDs are erratic and confined to a few municipalities. We also found that NCD services in Ghana continue to be clinical and less preventative. These findings have far-reaching implications for practice and require health planners in Ghana to pay equal attention in terms of budgetary allocations and other resources to both NCDs and communicable diseases.

A Holistic and Community-Based Service Program Promoting Mental Health among Latina Breast Cancer Survivors and Informal Caregivers.

This report discusses the components and uptake of a holistic-health community-based service program designed to promote mental health among Latina breast cancer survivors and their caregivers. Salud Holística para la Mujer's (SAHOM) strategic plan tackled all phases of the mental health prevention continuum and of the cancer care continuum.

Facilitators and barriers to person-centered planning from the perspectives of individuals receiving medicaid home and community-based services and care managers

BackgroundWhile person-centered planning is required within Medicaid Home and Community-Based Services (HCBS) programs, we know little about the extent to which it is being implemented and best approaches to measuring quality. ObjectiveOur study explored the experiences of individuals receiving Medicaid HCBS and care managers facilitating person-centered planning in three states to learn from their perspectives of facilitators and barriers. MethodsWe partnered with a national health plan and affiliated health plans in three states for recruitment. We used a semi-structured interview guide to conduct remote interviews with 13 individuals receiving HCBS and 31 care managers. To triangulate our findings, we reviewed assessment instruments from the three states and the person-centered care plans of HCBS recipients. ResultsFrom the perspectives of individuals receiving HCBS, facilitators to person-centered planning included: choice and control, personal goals and strengths, and relational communication. Care managers similarly identified the importance of relational communication, but also identified the development of measurable goals. Barriers from the perspectives of individuals receiving HCBS included: medical orientation of care plan, administrative and systemic barriers, and competencies of care managers. Care managers similarly identified administrative and systemic barriers. ConclusionsThis exploratory study provides important perspectives on implementation of person-centered planning. Findings can help inform improvements in policy and practice, as well as guide future directions in quality measure development and assessment.

How different incentives influence reported motivation and perceptions of performance in Ghanaian community-based health planning and services zones

Background:Maternal mortality is still a burden worldwide, and Ghana’s maternal and child mortalities are still high. Incentive schemes have been effective in improving health workers’ performance thereby reducing maternal and child deaths. The efficiency of public health services in most developing countries has been linked to the provision of incentives. Thus, financial packages for Community Health Volunteers (CHVs) serve as enablers for them to be focused and committed to their work. However, the poor performance of CHVs is still a challenge in health service delivery in many developing countries. Although the reasons for these persistent problems are understood, we need to find out how to implement what works in the face of political will and financial constraints. This study assesses how different incentives influence reported motivation and perceptions of performance in Community-based Health Planning and Services Program (CHPS) zones in the Upper East region.Methods:A quasi-experimental study design with post-intervention measurement was used. Performance-based interventions were implemented for 1 year in the Upper East region. The different interventions were rolled out in 55 of 120 CHPS zones. The 55 CHPS zones were randomly assigned to four groups: three groups of 14 CHPS zones with the last group containing 13 CHPS zones. Several alternative types of financial and non-financial incentives as well as their sustainability were explored. The financial incentive was a small monthly performance-based Stipend. The non-financial incentives were: Community recognition; paying for National Health Insurance Scheme (NHIS) premiums and fees for CHV, one spouse, and up to two children below 18 years, and; quarterly performance-based Awards for best-performing CHVs. The four groups represent the four different incentive schemes. We conducted 31 In-depth interviews (IDIs) and 31 Focus Group Discussions (FGDs) with health professionals and community members.Results:Community members and the CHVs wanted the stipend as the first incentive but requested that it be increased from the current level. The Community Health Officers (CHOs) prioritized the Awards over the Stipend because they felt it was too small to generate the required motivation in the CHVs. The second incentive was the National Health Insurance Scheme (NHIS) registration. Community recognition was also considered by health professionals as effective in motiving CHVs and work support inputs and CHVs training helped in improving output. The various incentives have helped increase health education and facilitated the work of the volunteers leading to increased outputs: Household visits and Antenatal Care and Postnatal Care coverage improved. The incentives have also influenced the initiative of volunteers. Work support inputs were also regarded as motivators by CHVs, but the challenges with the incentives included the size of the stipend and delays in disbursement.Conclusion:Incentives are effective in motivating CHVs to improve their performance, thereby improving access to and use of health services by community members. The Stipend, NHIS, Community recognition and Awards, and the work support inputs all appeared to be effective in improving CHVs’ performance and outcomes. Therefore, if health professionals implement these financial and non-financial incentives, it could bring a positive impact on health service delivery and use. Also, building the capacities of CHVs and providing them with the necessary inputs could improve output.

A person-centered approach to home and community-based services outcome measurement.

In the United States, over 2.5 million people with disabilities are recipients of supports through the Center for Medicare and Medicaid Services (CMS) Home and Community-Based Services (HCBS) program. Recent decades have seen a growing focus on providing HCBS in a person-centered manner thereby supporting outcomes that are both important for and to the person. HCBS outcome measurement, however, has not kept pace with advancements in person-centered thinking as it relates to providing supports to people with disabilities. The concept of person-centered outcome measurement has been inadequately defined and is frequently misunderstood including by those in the measurement field. The authors first operationally define person-centered measurement and establish its importance within the context of HCBS and the recent CMS's Final Settings Rule. The important role that person-centered measurement has to play in quality improvement efforts in this area is then explored. A discussion is subsequently provided as to the challenges that are faced in person-centered measurement specific to the disability field. In addition to further conceptualizing and defining this form of measurement, recommendations are provided for moving the field forward.

Community perspectives on cardiovascular disease control in rural Ghana: A qualitative study.

Cardiovascular disease (CVD) prevalence is high in Ghana-but awareness, prevention, and treatment is sparse, particularly in rural regions. The nurse-led Community-based Health Planning and Services program offers general preventive and primary care in these areas, but overlooks CVD and its risk factors. We conducted in-depth interviews with 30 community members (CM) in rural Navrongo, Ghana to understand their knowledge and beliefs regarding the causes and treatment of CVD and the potential role of community nurses in rendering CVD care. We transcribed audio records, coded these data for content, and qualitatively analyzed these codes for key themes. CMs described CVD as an acute, aggressive disease rather than a chronic asymptomatic condition, believing that CVD patients often die suddenly. Yet CMs identified causal risk factors for CVD: not only tobacco smoking and poor diet, but also emotional burdens and stressors, which cause and exacerbate CVD symptoms. Many CMs expressed interest in counseling on these risk factors, particularly diet. However, they felt that nurses could provide comprehensive CVD care only if key barriers (such as medication access and training) are addressed. In the interim, many saw nurses' main CVD care role as referring to the hospital. CMs would like CVD behavioral education from community nurses at local clinics, but feel the local health system is now too fragile to offer other CVD interventions. CMs believe that a more comprehensive CVD care model would require accessible medication, along with training for nurses to screen for hypertension and other cardiovascular risk factors-in addition to counseling on CVD prevention. Such counseling should build upon existing community beliefs and concerns regarding CVD-including its behavioral and mental health causes-in addition to usual measures to prevent CVD mortality such as diet changes and physical exercise.

Tailoring Perinatal Health Communication: Centering the Voices of Mothers at Risk for Maternal Mortality and Morbidity.

The United States has the highest maternal mortality rate of any industrialized country. According to the Centers for Disease Control, Black women die at 2-3 times the rate of white women, and the infant mortality rate in the U.S. is 2.5 times higher than their White counterparts. Maternal and child health programs, such as Healthy Start, are an important gateway to increasing awareness, education, and referral to perinatal care and mental health services. This paper explored mothers' perceptions of the importance of health and healthcare during pregnancy and postpartum and their preferences for communication from a community-based service program, such as Healthy Start. Data were collected from four focus groups with 29 expectant or current mothers. Most participants (57.7%) identify as Black or African American. They age from 24 to 43 with a mean of 31.7. We analyzed the data using the thematic analysis approach. Themes that emerged supported an overall desire for inclusive, strength-based educational materials. Use of advocacy-based health educational materials, materials that show diverse and realistic images of mothers, peer-based education through testimonials, and health education materials that are easy to understand and apply to one's own experience emerged as the broad theme from the focus groups.

CAREGIVER SUBGROUP ANALYSES FROM AN EMBEDDED DEMENTIA CARE EFFECTIVENESS TRIAL

Abstract Efficacious dementia care interventions for family/informal caregivers are increasingly being tested for effectiveness in “real world” service delivery settings. We conducted an effectiveness trial in which we embedded the Care of Persons with Dementia in their Environments (COPE) program into Connecticut’s publicly-funded Home and Community-Based Services program. COPE is designed to build dementia management skills in caregivers of people with dementia in the home setting. In published results from this trial with the full study cohort, caregivers who received COPE, compared to controls, experienced improved well-being due to the dementia management skills they learned (perceived well-being), but they did not experience reduced levels of distress due to dementia-related behavioral and psychological symptoms (distress). For this presentation, we determined COPE effects for selected caregiver subgroups on perceived well-being and distress. Regarding caregiver sex, we found that COPE effects were statistically significantly positive on both outcomes for females (both p&amp;lt;.05) but on neither outcome for males. Controlling for sex, we also found positive COPE effects on both outcomes for daughters (both p=.03) but on neither outcome for spouses or sons. For perceived well-being, we found positive COPE effects for White (p&amp;lt;.001) but not for Black caregivers. For distress, we found positive COPE effects for caregivers living apart (p=0.03) but not for those living together with people with dementia. Findings suggest that male, Black, and co-residing caregivers may need more support from COPE, and more broadly demonstrate the value of subgroup analyses in offering greater precision when embedding nonpharmacological interventions in effectiveness trials.

THE IMPACT OF COMMUNITY HEALTHCHOICES ON PERSON-CENTERED SERVICE PLANNING

Abstract Person-centered service planning (PCSP) is a required component of home and community-based services programs that operate under Medicaid waivers. CMS requires that states have processes in place to assure that participants and their family members (as desired and appropriate) are involved in decisions about their care. This mixed-method study combines interviews with participants and qualitative service coordinators regarding the PCSP process. Participant interviews using the Consumer Assessment of Health Providers Survey – Home and Community Based Services version found that the measure of “choice over services” improved slightly however, the “planning your care” measure was unchanged. Interviews with service coordinators found that the introduction of managed care had led to a system that was overly bureaucratic and focused on medical rather than social needs. This led to a perception that the service plans neglect aspects of daily living that are important for a good quality of life.

Moving home: Community transition supports for people with intellectual and developmental disabilities

BackgroundIn recognition of the important role housing plays in people's health and quality of life, Medicaid Home- and Community-Based Services (HCBS) programs are more frequently working to promote the housing security of Medicaid beneficiaries. One mechanism states use to promote housing security of people with intellectual and developmental disabilities (IDD) is to offer community transition services in their HCBS programs. Community transition services help with transition by assisting with securing housing and leases, obtaining basic furnishings, paying for utility setup, funding moving expenses, and making accessibility adaptations. ObjectiveThe aim of this study was to examine if and how states provided community transition services in their HCBS waiver programs for people with IDD. MethodsWe analyzed 107 fiscal year (FY) 2021 HCBS 1915(c) waivers for people with IDD from across the United States. We analyzed the service expenditures and utilization data for community transition services, including projected spending, projected number of users served, reimbursement rates, projected spending per participant, and annual service provision per participant. ResultsIn FY2021, 49 waivers (45.8%) from 28 states provided community transition services to people with IDD. A total of $7.21 million of spending was projected for community transition services for 2405 people with IDD, with an average spending per person of $2303. ConclusionsWhile community transition services can help promote the housing insecurity of people with IDD, there was wide variance in how these services were allocated to people with IDD in FY2021.

Duration of Dementia and Social Service Use in the U.S.-Born and Foreign-Born Mexican-American Population.

The study estimates the number of years after age 65 that Mexican Americans live with likely dementia and the impact of dementia on community-based services (CBS) use by nativity. Using the Hispanic Established Populations for the Epidemiologic Studies of the Elderly Sullivan methods are employed to predict duration of dementia and logistic regressions identify the predictors of service utilization. Foreign-born women spend more years than other groups with dementia. The foreign-born are more likely to use out-of-home services, whereas U.S.-born are more likely to use in-home services. The foreign-born with dementia of relatively recent onset had the highest probability of service use. Given the high cost of institutional care and availability of family caregivers, community-based services are a potentially useful alternative for the growing Mexican-American population living with dementia. Expanded Medicaid and CBS programs could be an equitable and cost-effective alternative that should be investigated.

Measuring Organizational Readiness for Change in Michigan’s Home and Community-based Services Program: Instrument Adaptation and Psychometric Testing

ABSTRACT Short, valid, and reliable tools that measure organizational readiness are needed in practice. This study adapted and tested a previously developed instrument for measuring organizational readiness in a Medicaid Home and Community-Based Services (HCBS) program. The Texas Christian University Organizational Readiness for Change (TCU-ORC) scale was adapted and tested for validity and reliability in a sample of 522 registered nurses and social workers employed at 18 program sites. Structural validity was established using the exploratory factor analysis. Convergent validity was evaluated via correlations with the Implementation Leadership Scale (ILS) score. The adapted ORC scale consisted of 23 items. Cronbach’s alphas for 5 subscales, Climate, Culture, Training, Motivation, and Pressure to Change exceeded .70. Convergent validity was supported by significant moderate correlations with the ILS. The adapted 23-item TCU-ORC scale is a valid and reliable instrument for measuring the organizational readiness for change in the Medicaid Home and Community-Based Services programs.

Implementing the Care of Persons With Dementia in Their Environments (COPE) Intervention in Community-Based Programs: Acceptability and Perceived Benefit From Care Managers' and Interventionists' Perspectives.

Nonpharmacologic interventions have demonstrated benefits for people living with dementia and their caregivers. Few studies have evaluated their implementation in real-world settings. Using normalization process theory (NPT), an implementation science framework, this study evaluated the acceptability of the care of persons with dementia in their environments (COPE) intervention by care managers and interventionists implemented in a Medicaid and state-revenue funded home and community-based services (HCBS) program. NPT and data from 9 care manager focus groups (n = 61) and 2 interventionist focus groups (n = 8) were utilized to understand COPE acceptability to program care managers and interventionists. NPT's 4 criteria, coherence, cognitive participation, collective action, and reflexive monitoring, framed the research questions used to evaluate the intervention's implementation. Care managers and interventionists demonstrated a shared understanding of COPE aims and the value of practices implemented (coherence). Training by national experts facilitated program buy-in to meet COPE goals and was demonstrated by care managers and interventionists as they used the training to broaden their program involvement (cognitive participation). Operational work done by care managers and interventionists to implement the intervention (collective action) and their shared perceptions of program benefits (reflexive monitoring) contributed to program implementation, families' positive responses to COPE and enhanced sustainability. Introducing evidence-based dementia care interventions into HCBS programs strongly depends upon building shared understandings between care managers and interventionists and valuing the contributions of all stakeholders involved in delivering care innovations to people living with dementia and their caregivers.

Impact of reduced restrictions on buprenorphine prescribing during COVID-19 among patients in a community-based treatment program

BackgroundMedications such as buprenorphine are considered the gold standard for the treatment of opioid use disorders. This study aimed to determine whether less restrictive buprenorphine prescribing practices during the COVID-19 pandemic impacted retention in and adherence to buprenorphine among patients accessing treatment from 2018-2020 at a community-based syringe services program. MethodsIn this retrospective cohort study, we compared retention in treatment before and during the COVID-19 pandemic. Then, with relaxed restrictions acting as the intervention in a natural experiment, we conducted a sub-analysis of “continuity participants” who accessed treatment services both before and during the COVID-19 period. Records of 418 historical control patients treated with buprenorphine before COVID-19 were compared to 88 patients enrolled during COVID-19 (n=43 remote telemedicine and n=45 remote provider with patient on-site). Cox proportional hazards regressions were used to assess risk factors for treatment discontinuation. The sub-analysis used proportion of days covered (PDC) differences before and during COVID-19 (n=164) for a paired analysis in a nonparametric bootstrap test. ResultsThe risk of discontinuation was 71% lower in those accessing remote telemedicine during COVID-19 (HR=0.29; CI: 0.18, 0.47) and 51% lower in those accessing their remote provider onsite during COVID-19 (HR=0.49; CI:0.31, 0.77), compared to the historical control group. The average PDC did not significantly differ before and during COVID-19 (difference=2.4%; CI:-0.6%, 5.3%). ConclusionsThe risk of discontinuing treatment was lower in both COVID-19 treatment groups compared to historical controls. Less restrictive buprenorphine prescribing guidelines during COVID-19 led to improved retention in care over 6-months.

Experiences of individuals self-directing Medicaid Home and Community-Based Services during COVID-19

BackgroundIn response to COVID-19, many state Medicaid Home and Community-Based Services (HCBS) programs increased flexibilities and options for self-direction. ObjectiveOur study sought to investigate the experiences of individuals self-directing during COVID-19. In particular we explored the following areas: 1) How have individuals maintained access to HCBS and workers?; 2) how have individuals maintained safety against COVID-19?; and 3) how have individuals maintained their health and well-being? MethodsWe partnered with community-based and national disability organizations for recruitment. We used a semi-structured interview guide to conduct remote interviews with 36 individuals from eleven states. The sample was diverse with regard to age, race/ethnicity, gender, and disability type. ResultsThree main themes emerged related to maintaining access to HCBS and direct care workers: 1) Benefits of authority to hire and fire; 2) benefits of ability to hire family members; and 3) fluctuations in needs and availability of workers. Two themes emerged related to maintaining safety against COVID-19: 1) Strategies for staying safe with workers; and 2) barriers in public health and service system response. Three themes emerged related to maintaining health and well-being: 1) Barriers to basic needs; 2) delaying needed care; and 3) use of telehealth and technology. ConclusionsThis study was among the first to examine the experiences of individuals self-directing their HCBS during COVID-19. The flexibility of the model provided many benefits, which have implications for future policy and practice. Findings also highlight barriers in maintaining health and well-being during COVID-19, illustrating the importance of planning for future public health emergencies.