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.].

What is and isn't working: Factors involved in sustaining community-based health and participation initiatives for people ageing with intellectual and developmental disabilities.

As people with intellectual and developmental disabilities (I/DD) age, it is important that I/DD agencies are prepared to support healthy ageing in homes and in communities. This study explored supports and barriers to sustaining community-based health and participation initiatives (CBHPI) for people ageing with I/DD living in group homes managed by agencies. The study utilized interviews and photovoice with 70 participants-35 individuals with I/DD and 35 management/direct support agency staff. Data were analysed through content analysis and triangulation of data where five themes emerged: Agency values and policies related to healthy ageing; resources and staff competencies; communication between management and staff; community/university partnerships; and peer relations. Findings show that I/DD agencies and people with I/DD value CBHPI, but they find them difficult to sustain due to limited resources and lack of training specific to ageing with I/DD. Conducting system-level research within I/DD agencies to include first-person accounts of people with I/DD, staff and management provides insight on how to effectively support the needs of people with I/DD to improve their health and community participation as they age.

Impacts of an Integrated Medicaid Managed Care Program for Adults with Behavioral Health Conditions: The Experience of Illinois.

This study assessed the impact of the Integrated Care Program (ICP), a new Medicaid managed care model in Illinois, on health services utilization and costs for adults with behavioral health conditions. Data sources included Medicaid claims, encounter records, and state payment data for 28,127 persons with a behavioral health diagnosis. Difference-in-differences models, in conjunction with propensity score weighting, were used to compare utilization and costs between ICP enrollees and a fee-for-service (FFS) comparison group. The model considered the impact of the SMART Act, which restricted access to care for the comparison group. Before the SMART Act, ICP was associated with 2.8 fewer all-cause primary care visits, 34.6 fewer behavioral health-specific outpatient visits, and 2.5 fewer all-cause inpatient admissions per 100 persons per month, and $228 lower total costs per member per month relative to the FFS group. After the SMART Act, ICP enrollees had increased outpatient and dental services utilization without significantly higher costs. The relative increase in utilization was due primarily to decreased utilization in the restricted FFS group after the SMART Act. By the end of the study period, the ICP group had 13.3 more all-cause primary care visits, 1.5 more emergency department visits, and 1.4 more dental visits per 100 persons per month relative to the FFS program. A fully-capitated, integrated managed care program has the potential to reduce overall Medicaid costs for people with behavioral health conditions without negative effects on service utilization.

Disparities in Unmet Service Needs Among Adults with Intellectual and Other Developmental Disabilities.

BACKGROUND: Due to long waiting lists for services, many adults with intellectual and developmental disabilities in the United States have unmet service needs. Little research, however, has identified the characteristics of caregivers and individuals with intellectual and developmental disabilities that relate to the unmet service needs among individuals who are waiting for services. METHOD: The present authors conducted a statewide mail survey of 234 caregivers of individuals with intellectual and developmental disabilities who were waiting for services. The present authors identified which parent and individual with intellectual and developmental disability characteristics were significantly associated with the number of unmet service needs. RESULTS: Individuals with intellectual and developmental disabilities who were in poor health, from minority backgrounds and non-verbal were significantly more likely to have a greater number of unmet service needs. Additionally, individuals with younger caregivers and individuals with caregivers from low-income backgrounds were significantly more likely to report a greater number of unmet service needs. DISCUSSION: Implications for research and policy are discussed.

Systematic reviews for informing rehabilitation practice: an introduction.

The research literature that rehabilitation clinicians need to be familiar with has become too large for anyone to read, and numerous published studies are too complex for many practitioners to understand and fruitfully use. One method to keep up with new findings is through systematic reviews. Systematic reviews can be effective tools that help guide rehabilitation practice by identifying the best research that provides the evidence for enhanced clinical decision-making. This article describes how systematic reviews are created, indicates where rehabilitation clinicians may find them, and refers to a resource that may be of use in evaluating their quality and applicability.

Community Capacity to Provide Mental/Behavioral Health Services for People With IDD Transitioning From State-Operated Developmental Centers.

The study's aim was to explore the capacity of community-based providers of residential supports and services to support people with intellectual and developmental disabilities who transitioned out of state-operated institutions into community-based settings. Receiving agency survey results from 65 agencies and individual-level variables of 2,499 people who had transitioned from an institution to a community-based setting indicated that people who returned to an institution post-transition tended to be younger, have a higher IQ score, were more likely to have a psychiatric diagnosis, tended to have shorter previous lengths of stay at an institution, transitioned to larger settings, and received services from an agency receiving behavioral health technical assistance as compared to those who remained in their transition settings.

Longitudinal appraisals of family caregiving for people with disabilities enrolled in Medicaid managed care.

Objective: To longitudinally examine the impact of public family support on appraisals of caregiving burden, satisfaction, and self-efficacy among families of adults with disabilities.Background: Little research exists on family support and the family experience within Medicaid managed care across disabilities and longitudinally.Method: Illinois Medicaid managed care enrollees with disabilities and their family members completed surveys over 2 years. Only families and enrollees who lived together were included (N = 182 pairs).Results: Family members with more unmet family support needs had increased caregiving burden and decreased satisfaction and self-efficacy. Family members providing more unpaid care reported higher burden. Black family members had significantly lower burden, and parents had significantly lower satisfaction and self-efficacy. Family members of enrollees with intellectual and developmental disabilities had higher self-efficacy.Conclusion: Family support is important to caregiving appraisals.Implications: There is a need for including family needs for services within assessments for services and within policy.Implications for rehabilitationFamilies provide a substantial amount of care for their family members with disabilities.More family support for family caregivers of people with disabilities is related to better caregiving appraisals within Medicaid managed care.Family caregiver support needs should be taken into account within policy and service assessments.

Guidelines and criteria for the implementation of community-based health promotion programs for individuals with disabilities.

Health promotion programs for people with disabilities are in the early stages of development. This critical review utilizes a credentialed expert panel to develop a set of guidelines for community-based health promotion programs for individuals with disabilities. The procedures include a review of background material, systematic literature review with drafted guidelines consisting of operational, participation and accessibility recommendations. The role that those with disabilities can play is addressed and includes program planning, implementation and evaluation, physical and programmatic accessibility of programs, and importance of evidence-based practices.

Managed Care Experiences of Medicaid Enrollees with Disabilities: A Qualitative Analysis of Consumer Survey Responses.

This qualitative analysis of survey data explores service and care experiences reported by Medicaid enrollees with disabilities newly transitioned to managed care. Consumer surveys were distributed to a random sample of adult program enrollees with disabilities in an independent evaluation of one state's Medicaid managed care (MMC) rollout. Researchers performed conventional content analysis to code comments submitted by enrollee participants (N=402) in response to two open-ended survey items. Six key themes were observed in the data: (1) unmet medical, long-term services and supports (LTSS), and informational needs; (2) ineffective care coordination; (3) barriers in accessing providers; (4) limitations in benefit coverage; (5) unreliable transportation; and (6) variable provider care experiences. The results revealed salient managed care performance issues for the disabled Medicaid population. Enrollee experiences can inform recommendations for service access, provision capacity, and the integrated care of people with disabilities in the state MMC program.

The Impact of Medicaid Managed Care on Health Service Utilization Among Adults With Intellectual and Developmental Disabilities.

People with intellectual and developmental disabilities (IDD) are frequent users of health services. We examined how their service utilization of emergency department (ED), inpatient hospitalization, and primary care physicians changed as they transitioned from fee-for-service to Medicaid managed care (MMC). Our results showed that MMC reduced the utilization of all of these services. A substantial decrease in ED visits was associated with the reduction in visits due to mental/behavioral health conditions and conditions that could be nonemergent and manageable with the community-based health services. These findings suggest that health service utilization of people with IDD is related not only to their health needs, but also to the delivery model that provides their health services.

Health Service Utilization and State Costs Among Adults Aging With Early-Acquired Physical Disabilities in Medicaid Managed Care.

Objective: We evaluated the impact of Medicaid managed care (MMC) on health service use and state costs among adults with early-acquired physical disabilities. Method: Using claims data, we tracked utilization of the emergency department (ED), inpatient admissions, outpatient physician visits, and state expenditures on enrollees who transitioned to MMC (n = 881). The inverse propensity score weight and a difference-in-differences regression model were used to estimate the impact of MMC using their counterparts who remained in fee-for-service (n = 1,552) as the comparison group. Results: MMC reduced ED use by 3.2% points/month (p < .001). Relative to younger enrollees (age ⩽45 years), MMC reduced inpatient admissions of older enrollees (age ⩾46 years) by 3.3% points/month (p < .001), and state expenditures by US$839/month (p < .01). Discussion: MMC could reduce the hospital service use of and state spending on enrollees with early-acquired physical disabilities. This impact may vary depending on the enrollees' age.

Caregiving, intellectual disability, and dementia: Report of the Summit Workgroup on Caregiving and Intellectual and Developmental Disabilities.

INTRODUCTION: A specially commissioned working group produced a report on caregiving, intellectual and developmental disabilities (IDDs), and dementia for the National Institutes of Health-located National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers. METHODS: Experts in caregiving, dementia, and IDDs examined the current state of research, policy, and practice related to caregiving and supports; identified the similarities and dissimilarities between IDD-related care and services and the general population affected by dementia; and considered how these findings might contribute to the conversation on developing a dementia care research and services development agenda. RESULTS: Five major areas related to programs and caregiving were assessed: (1) challenges of dementia; (2) family caregiving interventions; (3) supportive care settings; (4) effects of diversity; and (5) bridging service networks of aging and disability. DISCUSSION: Recommendations included increasing supports for caregivers of adults with IDDs and dementia; increasing research on community living settings and including caregivers of persons with IDDs in dementia research; acknowledging cultural values and practice diversity in caregiving; increasing screening for dementia and raising awareness; and leveraging integration of aging and disability networks.

Impact of Medicaid Managed Care on Illinois's Acute Health Services Expenditures for Adults With Intellectual and Developmental Disabilities.

States have increasingly transitioned Medicaid enrollees with disabilities from fee-for-service (FFS) to Medicaid Managed Care (MMC), intending to reduce state Medicaid spending and to provide better access to health services. Yet, previous studies on the impact of MMC are limited and findings are inconsistent. We analyzed the impact of MMC on costs by tracking Illinois's Medicaid acute health services expenditures for adults with intellectual and developmental disabilities (IDD) living in the community ( n = 1,216) before and after their transition to MMC. Results of the difference-in-differences (DID) regression analysis using an inverse propensity score weight (IPW) matched comparison group ( n = 1,134) design suggest that there were no significant state Medicaid cost savings in transitioning people with IDD from FFS to MMC.

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.

Advancing Research on Care Needs and Supportive Approaches for Persons With Dementia: Recommendations and Rationale.

The first National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers was held on October 16-17, 2017, at the National Institutes of Health. In this paper, participants from the Summit Session on Research on Care Needs and Supportive Approaches for Persons with Dementia summarize the state of the science, identify gaps in knowledge, and offer recommendations to improve science and practice in long-term care. Recommendations cover 4 areas focused on persons living with dementia: (1) symptoms (behavioral and psychological symptoms of dementia, function, cognition, and sleep); (2) dementia care settings (physical and social environments, home, and residential care); (3) living with dementia (living well with dementia, living alone with dementia, and living with dementia and intellectual and developmental disabilities); and (4) technology as a cross-cutting theme. The participants identify 10 of the most pressing research issues based on the findings from their collective papers. Final Summit recommendations included those presented by session participants and will be used to advise federal agencies and other organizations that fund research.

Care coordination experiences of people with disabilities enrolled in medicaid managed care.

PURPOSE: To understand the impact of experience and contacts with care coordinators on Medicaid Managed Care (MMC) enrollees with disabilities. METHOD: Primary data was collected from a random sample of 6000 out of the 100,000 people with disabilities enrolled in one state's mandatory MMC program. Surveys were conducted through the mail, telephone, and Internet; 1041 surveys were completed. The sample used for analysis included 442 MMC enrollees who received care coordination. Regression analyses were conducted with the outcomes of number of unmet health care needs and enrollee appraisal of the health services they received. Race, age, gender, and disability variables controlled for demographic differences, and the independent variables included enrollee experience with a care coordinator (coordinator knowledge of enrollee medical history and whether the coordinator took into account enrollee wishes and input) and frequency of contact with a care coordinator. RESULTS: Positive enrollee experiences with care coordinators significantly related to more positive enrollee health service appraisals and fewer unmet health care needs; frequency of contact did not have any significant impacts. People with mental health disabilities and intellectual/developmental disabilities had significantly lower health service appraisals. People with mental health disabilities had significantly more unmet needs. CONCLUSIONS: Quality of care coordination, but not frequency of contact alone, is associated with better health outcomes for MMC enrollees. Implications for rehabilitation Care coordination is a core component of managed care and facilitates effective healthcare management for people with complex chronic conditions and disabilities. Better experiences with care coordinators is related to fewer unmet healthcare needs and more positive health care service appraisals for Medicaid managed care enrollees. The continuous development of person-centered care coordination strategies and training programs emphasizing quality relationships between coordinators and consumers should be prioritized.

Aging With a Physical Disability in Medicaid Managed Care.

This study examines health services appraisal (HSA) and unmet health-care needs for adults (age 50 and over) with physical disabilities in Medicaid managed care (MMC) versus Medicaid fee for service (FFS). Surveys from 309 individuals in MMC and 349 in FFS 2 years after MMC implementation included demographics, MMC processes, HSA, and unmet health-care needs. Regression analyses with HSA and unmet health-care needs as outcomes included demographics and group status (MMC or FFS) for the entire sample, and demographics and MMC processes (continuity of care, experience with care coordinators and primary care physicians) as independent variables for only MMC enrollees. Group status was not associated with HSA or unmet needs. Among MMC enrollees, better health and more positive MMC processes related to higher HSA and lower unmet needs. It is important to consider the perspectives of people aging with disabilities in MMC to better serve their needs.

Low Levels of Physical Activity and Sedentary Behavior in Adults with Intellectual Disabilities.

Adults with intellectual disabilities (ID) are more likely to lead sedentary lifestyles and have low levels of physical activity (LLPA). The present study investigated the prevalence of reported LLPA and time spent watching TV in adults with ID and identified the associated factors for these behaviors. The proxy informants of 1618 adults with ID completed the surveys regarding their health behaviors. Multiple logistic regressions were employed for LLPA and multiple linear regressions for time spent watching TV. About 60% of adults with ID had LLPA and average time spent watching TV was 3.4 h a day. Some characteristics and health and function variables were identified as associated factors. While engaging in community activities and involvement in Special Olympics were inversely associated with LLPA, they were not associated with time spent watching TV. Attending day/educational programs or being employed were associated with spending less time watching TV. Findings highlight differential factors associated with LLPA versus TV-watching behavior in adults with ID. Hence, a key strategy aimed at increasing physical activity includes promoting participation in social and community activities, while targeted activities for reducing sedentary behavior might focus on providing day programs or employment opportunities for adults with ID.

Health services appraisal and the transition to Medicaid Managed Care from fee for service.

BACKGROUND: Many states are transitioning fee-for-service (FFS) Medicaid into Medicaid Managed Care (MMC) for people with disabilities. OBJECTIVE: This study examined managed care's impact on health services appraisal (HSA) and unmet medical needs of individuals with disabilities receiving Medicaid. Key questions included 1) Do participant demographics and enrollment in MMC impact unmet medical needs and HSA? 2) Within MMC, do demographics and continuity of care relate to unmet medical needs? 3) Within MMC, do demographics, unmet medical needs and continuity of care relate to HSA? METHODS: We collected cross-sectional survey data (n = 1615) from people with disabilities in MMC operated by for-profit insurance companies (n = 849) and a similar group remaining in FFS (n = 766) in one state. Regression analyses were conducted across these groups and within MMC only. RESULTS: Across Medicaid groups, MMC enrollment was not related to either HSA or unmet needs; health status, having a mental health disability and unmet transportation needs related to HSA and health status, unmet transportation needs and having a mental health or physical disability related to higher unmet medical needs. Within MMC, in addition to better health and fewer unmet medical needs, less continuity of care significantly decreased HSA. Higher unmet transportation needs, poorer health status, having a physical or mental health disability, and less continuity of care significantly decreased unmet medical needs. CONCLUSIONS: This research points to the importance of meeting unmet needs of individuals in MMC and the need for increased continuity of care as people transition from FFS.

Perceptions of Health and Healthcare of People With Intellectual and Developmental Disabilities in Medicaid Managed Care.

This study examined perceptions of health and healthcare of people with intellectual and developmental disabilities (IDD) receiving Medicaid Managed Care. Exploratory, semistructured interviews were conducted with 23 participants. Findings indicate that participants generally expressed being in good health and defined good health as (a) absence of pain, disease, and symptoms; (b) adherence to or not requiring treatment; (c) physical self-care; (d) mental or spiritual self-care; and (e) ability to perform the activities one wants to do. Participants conceptualized healthcare as (a) ensuring needs are met through access to services, (b) obtaining quality services, (c) navigating the healthcare system successfully, and (d) receiving humanizing healthcare. This study has implications for improving healthcare and communications between people with IDD and healthcare providers.