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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Families of individuals with intellectual and developmental disabilities: policy, funding, services, and experiences.

Families are critical in the provision of lifelong support to individuals with intellectual and developmental disabilities (IDD). Today, more people with IDD receive long-term services and supports while living with their families. Thus, it is important that researchers, practitioners, and policy makers understand how to best support families who provide at-home support to children and adults with IDD. This article summarizes (a) the status of research regarding the support of families who provide support at home to individuals with IDD, (b) present points of concern regarding supports for these families, and (c) associated future research priorities related to supporting families.

Self-directed support: impact of hiring practices on adults with intellectual and developmental disabilities and families.

The study examined the differential experiences and outcomes for people with intellectual and developmental disabilities and their families receiving self-directed services based on the type of personal support worker hired (parents, siblings, other relatives, friends, and agency staff). The sample consisted of 372 participants in a self-directed waiver program who used personal assistance services. Results indicated that the caregiver's satisfaction with the personal support worker, self-efficacy in managing personal support workers, and mental health varied significantly based on type of personal support worker hired. Also, the physical health and daily choice making of the adults with disabilities differed significantly by type of personal support worker hired.

Support needs of siblings of people with developmental disabilities.

This qualitative study examines the support needs of adult siblings of people with developmental disabilities. A survey completed by 139 siblings of people with developmental disabilities captured the needs of adult siblings through 2 open-ended questions. A grounded theory approach was used, and the sibling responses anchored the analysis, interpretation of findings, and discussion using the constant comparison method. Eleven core variables and 3 overarching themes emerged. Three overarching themes for sibling support needs include: (a) getting disability-related information, (b) getting support for their caregiving role, and (c) enhancing the formal support system to address sibling needs.

Health profile of aging family caregivers supporting adults with intellectual and developmental disabilities at home.

The health status of 206 female caregivers supporting adults with intellectual and developmental disabilities at home was investigated using objective (i.e., presence of chronic health conditions and activity limitations) and subjective (i.e., self-perceived health status) health measures compared with those of women in the general population in 2 age groups: middle age (Ages 40-59 years) and older ages (> or =60 years). Prevalence of arthritis, high blood pressure, obesity, and activity limitations for the caregivers in both age groups was significantly higher than that for women in the general population. Middle-age caregivers reported a higher prevalence of diabetes and high blood cholesterol than their age peers from the general population. Despite the potential health challenges, the caregivers generally perceived their health better than that of women in the general population. Older caregivers' perceptions on their psychological well being, however, appeared to an exception. Implications regarding potential health risks for caregivers and residential services for persons with intellectual and developmental disabilities are discussed.

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.

Involvement of adult siblings of persons with developmental disabilities in future planning.

This study examined factors influencing involvement of siblings of individuals with developmental disabilities in future planning and their expectation of future caregiving. The sample consisted of 139 adult siblings recruited from an online sibling list and a sibling conference. Results indicated that few families made plans or involved siblings in the planning. Siblings who were most involved in future planning were older, more involved in disability activities, and provided more support to their sibling with disabilities. About 38% of siblings expected to be primary caregivers and were more likely to expect this role if the sibling with a disability lived closer and was female, had more sibling contact, provided them with more support, and felt greater caregiving satisfaction. Major support needs of siblings were for support groups, workshops-training on how to assume caregiving responsibility, financial support, and printed material on making future plans.