Establishing Best Practices in Telehealth Care for Adults with Developmental Disabilities in the United States: An e-Delphi Study.

Background: Telehealth care is now a key element of mainstream health care since the COVID-19 pandemic, with all types of health care providers joining the digital revolution. As a population experiencing health care disparities, adults with developmental disabilities and their supporters have described variable experiences with telehealth care that contribute to overall care quality and health outcomes. Methods: This e-Delphi study established consensus on best practices in telehealth care for adults with developmental disabilities in the United States. Online surveys and videoconferencing interviews were conducted with 44 expert panelists with experience with telehealth care and developmental disabilities, including adults with developmental disabilities, family members, direct support professionals, nurses, and health care providers. Results: Three rounds of surveys resulted in a set of 9 guidelines consisting of 42 items. The guidelines addressed 1) appropriate situations for telehealth care, 2) communication needs and preferences, 3) support person collaboration, 4) education and anticipatory guidance, 5) reminders, 6) coordination of care, 7) equitable and fair access, 8) privacy and safety, and 9) evidence-based practice. Conclusion: Health care providers can adopt these best practice guidelines to ensure telehealth care is provided equitably and safely to adults with developmental disabilities. Policy advocacy is needed for the uptake of these guidelines and for health care providers and adults with developmental disabilities to access the resources needed for safe and effective telehealth care use.

Health professionals' education related to people with intellectual and developmental disabilities: A scoping review.

BACKGROUND: People with intellectual and developmental disabilities are among the most underserved in an inequitable healthcare system. METHODS: Using Arksey and O'Malley's methodology and a social determinants of health framework, we conducted a scoping review of literature on the state of practice in education of healthcare professionals in the health and healthcare needs of this population. RESULTS: Searches found 4948 articles, with 182 included in the final review. Themes identified included gaps of not being informed by workforce needs, continued use of the medical model of care, not addressing intersectionality with racial/ethnic and other discriminations, and lack of involvement of the population in developing/evaluating programs and promising trends of development of competency-based interprofessional programs with experiential learning. CONCLUSION: We provide recommendations for best practices in a concerted effort to educate a healthcare workforce equipped with the knowledge and skills to address the health needs of this population.

Partner Caregiver Resilience: A Scoping Review.

PURPOSE: Caring for older adults with Alzheimer's disease and related dementias (ADRD) is a significant challenge for partner caregivers (i.e., committed, married, or cohabiting individuals). Understanding partner caregivers' needs is crucial to promote their well-being during the disease trajectory. The concept of resilience may help explain how ADRD partner caregivers manage in the face of significant challenges. The purpose of the current scoping review was to synthesize the qualitative evidence of the level of resilience among partner caregivers of persons with ADRD. METHOD: A scoping review was conducted, which resulted in 19 research studies meeting inclusion criteria. RESULTS: Findings were grouped by significant aspects of resilience as reflected in the studies reviewed, including risk and protective factors, partner caregivers' characteristics, and challenges and facilitators of resilience. Knowledge, skills, and access to social, psychological, and emotional support are needed to foster partner caregiver resilience. CONCLUSION: Further resilience research is necessary to inform development of public policies, programs, and interventions tailored to the unique needs of ADRD partner caregivers. [Research in Gerontological Nursing, 17(2), 99-108.].

Presentation of Depressive Symptoms in Autism Spectrum Disorders.

BACKGROUND: Depressive disorders are frequently mis- and underdiagnosed in individuals with autism spectrum disorders (ASD). OBJECTIVE: Our objective was to identify and synthesize current knowledge regarding (1) the presentation of depressive symptoms and (2) the use of self-reports in assessing depressive symptoms in individuals with ASD and comparisons between self-reported and observer-reported symptoms. A scoping review was conducted to capture the full range of literature on the topic and to identify research gaps. METHODS: Articles were identified through a search of academic literature and screened for relevance to the aims of the review. RESULTS: In addition to typical depression symptoms, individuals with ASD may demonstrate atypical symptoms such as changes in autistic symptoms, self-injurious behavior, and psychomotor changes. Moreover, the review revealed a bias toward observer-reports of symptoms. Self-reports frequently were not included or were ascribed less weight than observer-reports. Self-reports typically differed from reports given by parents or other caregivers, but a consistent pattern in these differences has not been established. CONCLUSIONS: Further research on the use of self-reports in assessing depressive symptoms in individuals with ASD is needed. Self-reports may provide information not obtainable through observer-reports, and integrating both self- and observer-reports in psychiatric evaluations may produce more comprehensive and accurate assessments.

Mental Health of Older Adults With Intellectual Disability.

Across most age groups, individuals with intellectual disability (ID) have higher rates of mental health conditions than the general population. Approximately one third of older adults with ID living in the community experience the same mental health conditions as older adults in the general population but have unique needs for assessment and treatment. A health equity framework offers an important social perspective in addressing these needs. Timely recognition and diagnosis of mental health conditions in individuals with ID involves collaboration with family and other supports. Among older adults with ID, polypharmacy is strongly associated with mental health conditions. Older adults with ID are more likely to use the emergency department for treatment of their mental health conditions. The majority of mental health providers are not trained in working with patients with ID. Education, policy changes, and research are needed to improve the mental health care of this population. [Journal of Psychosocial Nursing and Mental Health Services, 60(7), 10-14.].

Increasing Childhood Asthma Care Appointments on a Mobile Asthma Van.

Children in two communities of a large city in the Midwestern United States have higher rates of asthma than other areas of the city. The communities have barriers to accessing care, including high rates of unemployment and being uninsured and undocumented. A mobile van provides no-cost asthma care to children at schools in these communities, but use of these services has decreased more than 50% over the past 5 years. School nurses have the potential to improve asthma outcomes by collaborating with health-care providers. The purpose of the program was to increase the number of appointments scheduled and attended on the asthma van at both schools. For this program, we (a) implemented an unaccompanied minor consent, (b) enhanced care coordination, and (c) improved a respiratory health survey tool. Results showed an increased number of appointments scheduled and attended on the asthma van. The program was successful even though community-specific barriers existed.

Technical Standards for Nursing Education Programs in the 21st Century.

PURPOSE: The Institute of Medicine (2000, 2002) exposed serious safety problems in the health system and called for total qualitative system change. The Institute of Medicine (2011, 2015) also calls for improving the education of nurses to provide leadership for a redesigned health system. Intertwined with improving education is the need to recruit and retain diverse highly qualified students. Disability is part of diversity inclusion, but current technical standards (nonacademic requirements) for admission to many nursing programs are a barrier to the entry of persons with disabilities. Rehabilitation nurse leaders are in a unique position to improve disability diversity in nursing. The purpose of this paper is to discuss the importance of disability diversity in nursing. DESIGN: The history of existing technical standards used in many nursing programs is reviewed along with examples. METHODS: On the basis of the concept that disability inclusion is a part of diversity inclusion, we propose a new model of technical standards for nursing education. CONCLUSION AND CLINICAL RELEVANCE: Rehabilitation nurse leaders can lead in eliminating barriers to persons with disabilities entering nursing.

Patient outcomes associated with tailored hospital programs for intellectual disabilities.

OBJECTIVES: Hospitals have begun designing programs tailored to patients with intellectual disabilities to address their specific healthcare needs and social determinants of health. This study aimed to determine whether these programs improve hospital outcomes for patients with intellectual disabilities. STUDY DESIGN: This cross-sectional, retrospective study analyzed data for patients with a primary or secondary diagnosis of intellectual disability and/or autism who were discharged from 5 hospitals participating in Vizient's Clinical Data Base/Resource Manager between January 2010 and September 2018. METHODS: Generalized linear regression models were constructed to test the association between tailored program status and length of stay, cost, and cost per day, and a binary logistic regression model was constructed to test the association between tailored program status and 30-day readmission. A secondary analysis stratified patients by 3M All Patient Refined Diagnosis Related Groups grouper (the standard for inpatient classification) admission severity of illness (ASOI) score. RESULTS: Of the 6618 patients included in the study, 29% were treated at hospitals with tailored programs. After controlling for patient demographic characteristics and clinical factors, patients treated at hospitals without programs had higher total costs (relative risk [RR], 1.06; P = .038) and cost per day (RR, 1.11; P <.001). Patients with an extreme ASOI score who were treated at hospitals without programs had significantly longer stays (RR, 1.38; P = .001), higher total cost (RR, 1.42; P <.001), and higher cost per day (RR, 1.10; P = .025) than patients treated at hospitals with programs. CONCLUSIONS: Providing tailored programs for patients with intellectual disabilities is a promising strategy for improving inpatient care for this population.

Improving Stage of Change in an Employee Wellness Program.

Physical activity readiness of front-line employees caring for adults with disabilities (N = 381) improved during a two-phase project based on stages of change (SOC) theory. In Phase 1, we assessed barriers to, and readiness for, participation in an employee wellness program. We collected data from workers using focus groups and a preintervention physical activity readiness survey. Focus groups (N = 14) identified barriers, including lack of communication about the employee wellness program. With respect to their SOC (N = 82), 7% were in precontemplation, 16% in contemplation, 52% preparation, 5% in action, and 20% in maintenance SOC. In Phase 2, we aimed to improve readiness for participation in the program. We used SOC-based employee Facebook group messages, a health education fair, and measurement through a postintervention physical activity readiness survey. The mean number of "views" in which the workers saw the 16 theory-based messages was 12.2 (range = 0-27). Fourteen adults and 17 children attended the fair. Postintervention survey results (N = 125) indicated physical activity readiness improvement with 1% in precontemplation, 21% in contemplation, 33% in preparation, 33% in action, and 12% in maintenance SOC.

Evaluation of Factors Related to Prolonged Lengths of Stay for Patients With Autism With or Without Intellectual Disability.

Patients with autism spectrum disorder and/or intellectual disability (ASD/ID) face unique health care challenges. In addition to hospital experiences characterized by fear and insufficient staff training, these patients have 1.5-times longer lengths of stay (LOS) than patients without ASD/ID, and 3.4% of patients with ASD/ID have prolonged LOS (i.e., ≥30 days). Little research exists on factors related to prolonged LOS of patients with ASD/ID, hindering efforts to develop and implement evidence-based practices to improve care and reduce prolonged LOS. The purpose of the current study was to describe factors related to prolonged LOS of adult patients with ASD/ID in acute care settings using a retrospective chart review of 10 patients discharged from one academic medical center. Findings indicate that health care institutions should evaluate performance with this patient population and identify evidence-based strategies to provide a safe environment for care and reduce LOS that is due to non-health care needs. [Journal of Psychosocial Nursing and Mental Health Services, 57(7), 17-22.].

Steps to Effective Problem-Solving in group homes.

Aggressive/challenging behaviors (A/CB) are a major public health problem for individuals with intellectual disabilities (ID). A leading reason for psychiatric hospitalizations and incarcerations, such behaviors are costly to the health care system, agencies, and families. Social problem-solving (SPS) training programs for individuals with ID have had positive behavioral results, but most were conducted in clinical or forensic settings. None was a community-based preventive intervention, none examined whether the behaviors decreased in residential and work settings, and none addressed cost-effectiveness. In preliminary work, we modified an effective SPS training program (ADAPT: Attitude, Define, Alternatives, Predict, and Try out), using input from individuals with ID and residential staff, as a community-based preventive intervention that we delivered in group homes (STEPS: Steps to Effective Problem-solving). Individuals with ID have high rates of obesity, and our attention-control condition is a nutrition intervention: Food for Life. We describe the protocol for a randomized clinical trial to: (1) test the efficacy of the STEPS intervention for improving SPS skills and reducing A/CB compared to an attention-control nutrition intervention in group homes; (2) assess the mediating effect of residential staff SPS skills, group-home level SPS skills, and group cohesiveness on the improvement of SPS skills and reductions in A/CB; and (3) evaluate the cost-effectiveness of STEPS. We expect to show that STEPS is a preventive strategy to reduce A/CBs among individuals with ID and improve the cost-effectiveness of their care.

Improving hospital care of patients with intellectual and developmental disabilities.

People with intellectual disabilities and developmental disabilities (IDD) face poorer care and outcomes when hospitalized than patients without IDD. A panel discussion Hospital care for individuals with IDD: The Issues and Challenges was held at the Annual Conference of the American Academy of Developmental Medicine and Dentistry, held in Chicago July 8-10, 2016. Among the panelists were representatives from Rush University Medical Center in Chicago, IL and Saint Barnabas Medical Center in Livingston, NJ who discussed efforts to improve hospital care of patients with IDD at their institutions. Systemic changes are needed to improve care, however, programs that target improving care for patients with IDD are possible within current systems and with current staff who are empowered to make changes that improve the quality of care.

Technical Standards for Nursing Education Programs in the 21st Century.

PURPOSE: The Institute of Medicine (2000, 2002) exposed serious safety problems in the health system and called for total qualitative system change. The Institute of Medicine (2011, 2015) also calls for improving the education of nurses to provide leadership for a redesigned health system. Intertwined with improving education is the need to recruit and retain diverse highly qualified students. Disability is part of diversity inclusion, but current technical standards (nonacademic requirements) for admission to many nursing programs are a barrier to the entry of persons with disabilities. Rehabilitation nurse leaders are in a unique position to improve disability diversity in nursing. The purpose of this paper is to discuss the importance of disability diversity in nursing. DESIGN: The history of existing technical standards used in many nursing programs is reviewed along with examples. METHODS: On the basis of the concept that disability inclusion is a part of diversity inclusion, we propose a new model of technical standards for nursing education. CONCLUSION AND CLINICAL RELEVANCE: Rehabilitation nurse leaders can lead in eliminating barriers to persons with disabilities entering nursing.

Building a Culture of Inclusion: Disability as Opportunity for Organizational Growth and Improving Patient Care.

Administrators at Rush University Medical Center have made a commitment to diversity, including accommodating disabilities in the workplace and for students. This article explains extensive multilevel accommodations instituted by Rush University Medical Center that promote organizational growth and a healthier work environment and improve patient care.

Factors related to complications among adult patients with intellectual disabilities hospitalized at an academic medical center.

People with intellectual disabilities (ID) represent a small but important group of hospitalized patients who have higher rates of complications than do patients without ID hospitalized for the same reasons. Complications are potentially avoidable conditions, such as healthcare-acquired infections, healthcare-acquired skin breakdown, falls, and medication errors and reactions. Addressing factors related to complications can focus efforts to improve hospital care. The purpose of this exploratory study was to analyze data from reviews of academic medical center charts (N  =  70) about complications and to examine patient and hospitalization characteristics in relation to complications among adult patients (age ≥ 18 years) with ID hospitalized for nonpsychiatric reasons. Adults with ID tended to be twice as likely to have complications (χ2  =  2.893, df  =  1, p  =  .09) if they had a surgical procedure and were nearly four times as likely to have complications (χ2  =  6.836, df  =  1, p  =  .009) if they had multiple chronic health conditions (three of the following: history of cerebral palsy, autism spectrum symptoms, aggressive behavior, respiratory disorder, and admission through the emergency department). Findings suggest preliminary criteria for assessing risk for complications among hospitalized people with ID and the need for attention to their specific needs when hospitalized.

Hospitalizations of adults with intellectual disability in academic medical centers.

Individuals with intellectual disability (ID) represent a small but important group of hospitalized patients who often have complex health care needs. Individuals with ID experience high rates of hospitalization for ambulatory-sensitive conditions and high rates of hospitalizations in general, even when in formal community care systems; however, no research was found on the common reasons for which this population is hospitalized. Academic medical centers often treat the most complex patients, and data from these centers can provide insight into the needs of patient populations with complex needs. The purpose of this study was to analyze descriptive data from the UHC (formerly known as the University Healthsystem Consortium; an alliance of 115 U.S. academic medical centers and 300 of their affiliated hospitals) regarding common reasons for hospitalization, need for intensive care, and common hospitalization outcome measures of length of stay and complications for adult (age ≥ 18) patients with ID. Findings indicate the need for specific attention to the needs of hospitalized patients with ID.

Rasch analysis of the Mental Health Recovery Measure.

Consumer-oriented recovery among people with mental illness has been discussed for more than two decades, but few reliable and valid recovery measurements are currently available. This study used Rasch methods to assess the Mental Health Recovery Measure (MHRM). Participants were 156 adults with mental illness who lived in the community. After the Rasch analyses, the MHRM was modified to a 26-item measure with a 4-point Likert scale. Unidimensionality was confirmed for the revised MHRM, and it also showed proper rating scale functioning and high reliability. The revised MHRM is sufficient to assess only those in the initial and middle stages of recovery. More high-recovery-level items are needed to assess people in a high-recovery stage. Occupational therapists can use the revised MHRM in future quantitative studies and program evaluation.

Modifying a social problem-solving program with the input of individuals with intellectual disabilities and their staff.

Social problem-solving programs have shown success in reducing aggressive/challenging behaviors among individuals with intellectual disabilities in clinical settings, but have not been adapted for health promotion in community settings. We modified a social problem-solving program for the community setting of the group home. Multiple sequential methods were used to seek advice from community members on making materials understandable and on intervention delivery. A committee of group home supervisory staff gave advice on content and delivery. Cognitive interviews with individuals with intellectual disabilities and residential staff provided input on content wording and examples. Piloting the program provided experience with content and delivery. The process provides lessons on partnering with vulnerable populations and community stakeholders to develop health programs.