Community-Based Services Waiver Research Articles

Impact on Appendix K Flexibilities in the NC Innovations Waiver During the COVID-19 Public Health Emergency

In March 2020, the COVID-19 public health emergency com¬pelled NC Medicaid to implement Appendix K flexibilities to change the 1915(c) Home & Community-Based Services Waivers. This paper will examine the impact of these flex¬ibilities and the subsequent decision to sunset them, with a focus on the Innovations Waiver.

Medicaid Home- and Community-Based Services Waivers for People With Intellectual and Developmental Disabilities.

Medicaid Home- and Community-Based Services (HCBS) 1915(c) waivers are the most prominent funding mechanism for the long-term services and supports (LTSS) of people with intellectual and developmental disabilities (IDD). This study's aim was to conduct an in-depth national analysis of fiscal year (FY) 2021 HCBS 1915(c) waivers for people with IDD. In FY 2021, over $43.2 billion was projected for the HCBS of 861,038 people with IDD. An average of $47,315 was projected per person with IDD annually. The services that received the most funding were: residential habilitation; supports to live in one's own home; and day habilitation. HCBS is necessary so people with IDD can live and thrive in their communities.

Admitting what is needed: How the health system and society can reduce hospitalizations for children with medical complexity.

Admitting what is needed: How the health system and society can reduce hospitalizations for children with medical complexity.

State-level Medicaid 1915(c) home and community-based services waiver support for caregivers

BackgroundInformal caregivers encounter emotional distress, worsening personal health, and financial strain. The Medicaid 1915(c) Home and Community-Based Services (HCBS) waiver programs provide an array of services including support for caregivers. PurposeThis policy analysis examined Medicaid waiver services offered to persons 65 and older among the 50 states and District of Columbia (DC). MethodsData were obtained from Medicaid waiver applications for adults age 65 and older available at Medicaid.gov. Data elements included number of waiver programs and services for supporting caregivers. Descriptive statistics were applied. FindingsForty-three states including DC (84%) offered a Medicaid waiver for older adults; seven states (14%) offer two waiver programs; eight states (16%) had no Medicaid waiver. Payment to a relative or legal guardian caregiver was the most common service offered in 39 (76%) states. Other services included in-home respite care and adult day health care (35 states; 67%), out-of-home respite care (32 states; 63%), skilled nursing (28 states; 55%), paid spousal caregivers (18 states; 35%), caregiver training (15 states; 29%), and adult day care for socialization (7 states, 14%). DiscussionThis study identifies wide variability in caregiver support across state-based Medicaid waivers. Future research should evaluate effectiveness of the waiver programs in supporting caregivers and inform evidence-based policy advocacy for supporting caregivers.

Trends In Medicaid Home And Community-Based Services Waivers For Older Adults.

During the past several decades, state Medicaid programs have expanded the use of home and community-based services, particularly through Section 1915(c) waivers and Section 1115 demonstration waivers. We document trends from the period 1997-2020 in waivers targeting older adults, focusing on services offered. Nearly every service category saw an increase in coverage and spending, especially support for self-direction and community transition.

Employing Family Caregivers: An Innovative Health Care Model.

Employing Family Caregivers: An Innovative Health Care Model.

Inequities in Receipt of the North Carolina Medicaid Waiver Among Individuals with Intellectual Disability or Autism Spectrum Disorder.

We examined characteristics associated with receiving the North Carolina Home and Community-Based Services Waiver for intellectual and developmental disabilities (I/DDs) and its association with emergency department (ED) utilization. Through analysis of the North Carolina 2017 to 2018 Medicaid claims and enrollment data, we examined characteristics (age, sex, race and ethnicity, geography, diagnosis (intellectual disability [ID] with or without autism spectrum disorders or autism spectrum disorder without ID) associated with receiving the NC I/DD Waiver and the association of this Wavier with ED utilization. We identified patients with at least 1 International Classification of Diseases-10-CM diagnosis code for an ID or autism spectrum disorder. We excluded patients with missing county information and whose enrollment in the NC I/DD Waiver program began after October 1, 2017. Only 22% of 53,531 individuals with I/DD in North Carolina received the Waiver. Non-Hispanic Blacks and Hispanic individuals were less likely to receive the Waiver than non-Hispanic White individuals. Adults (>21 years old), men, and urban residents were more likely to receive the Waiver. Individuals who received the Waiver were 31% less likely to use the ED. Innovative strategies are needed to provide equitable access to the NC I/DD Waiver and provide services to the 14,000 people with I/DD currently waiting to receive the Waiver. Through the Waiver, those with I/DD can access preventative and therapeutic outpatient services and decrease their need for ED care. These findings highlight the need for policy reform to address inequities in access to the Waiver for individuals with I/DD.

Therapy use for U.S. school-aged children with developmental disabilities: State variation and determinants.

Therapy services can support developmental needs, improve social emotional outcomes, and reduce persistent health inequities for children with developmental disabilities (DD). Receipt of therapy services may be especially timely when children with DD are school-aged, once diagnosis has often occurred. Yet limited knowledge exists on geographic variability and determinants of therapy use among school-aged U.S. children with DD. We aimed to (1) determine if therapy use varies significantly by state and (2) examine associations of health determinants with therapy use among U.S. school-aged children with DD. This was a secondary analysis of 2016 and 2017 National Survey of Children's Health data. The sample included 9984 children with DD ages 6-17 years. We obtained odds ratios and predicted margins with 95% confidence intervals from multilevel logistic regression models to examine therapy use variation and determinants. Overall, 34.6% of children used therapy services. Therapy use varied significantly across states (σ2=0.11, SE=0.04). Younger age, public insurance, functional limitations, individualized education program, frustration accessing services, and care coordination need were associated with higher adjusted odds of therapy access. In states with Medicaid Home and Community-Based Services waivers, higher estimated annual waiver cost was associated with lower adjusted odds of therapy use. Results highlight geographic disparities in therapy use and multilevel targets to increase therapy use for school-aged children with DD.

The Association of the Medicaid 1915(c) Home and Community-Based Services Waivers with Emergency Department Utilization among Youth with Autism Spectrum Disorder

Using the 2008-2013 Medicaid Analytic eXtract files, this retrospective cohort study was to evaluate the effect of Medicaid home and community-based services (HCBS) waiver programs on emergency department (ED) utilizations among youth with autism spectrum disorder (ASD). Our study showed that the annual ED utilization rates were 13.5% and 18.8% for individuals on autism specific and intellectual and developmental disabilities (IDD) waivers respectively, vs. 28.5% for those without a waiver. Multivariable logistic regression showed that, compared to no waiver, autism specific waivers (adjusted odds ratio: 0.62; 95% Confidence Interval: [0.58-0.66]) and IDD waivers (0.65; [0.64-0.66]) were strongly associated with reduced ED. These findings suggest that HCBS waivers are effective in reducing the incidence of ED visits among youth with ASD.

Learning about and qualifying for Home and Community-Based Services Waivers: Families’ perspectives and experiences

Learning about and qualifying for Home and Community-Based Services Waivers: Families’ perspectives and experiences

A New Era of Segregation Twenty Years After Olmstead: The Failure of HCBS Waiver Programs and the Need for a Comprehensive Federal HCBS Program

Despite significant improvements in treatment and care over the last century, individuals with Intellectual and Developmental Disabilities (IDD) still face barriers to access of appropriate services that allow for total integration into local communities. The United States Supreme Court held in Olmstead that individuals with IDD have the right to receive services in the community to avoid institutionalization. While attempts have been made to provide such services, the current scheme of Home and Community-Based Services Waiver Programs at the state level is failing, which has resulted in a new era of segregation. This Article compares and contrasts the failed Kerr-Mills Medical Assistance for the Aged Act, a precursor to Medicare, and the failing HCBS Waiver Programs. Drawing on the damning similarities between the two programs, this Article highlights the failure of the state HCBS Waiver Programs and calls for the creation of a Federal Home and Community-Based Services program for the same reasons that Congress ultimately enacted Medicare, a Federal program, as a replacement for the Kerr-Mills Medical Assistance for the Aged Act.

Variability In States' Coverage Of Children With Medical Complexity Through Home And Community-Based Services Waivers.

Even though children with medical complexity represent less than 1percent of the US pediatric population, they are among the costliest users of the health care system. Much of the care for these children is delivered in home and community-based settings and covered by Medicaid waivers under Section 1915(c). Expenditures related to these waivers have been steadily increasing, with most recent estimates showing spending that exceeds $48billion per year. Little is known about these waivers' economic impact or effectiveness, because their components and coverage have not previously been well defined. Our study addressed this paucity of data by analyzing the scope of coverage offered by the waivers and evaluating how states are using them to cover children with medical complexity. We found great variability in how states choose to interpret scope of coverage and services offered, and this variability may have an impact on child and family outcomes.

The effect of Medicaid waivers on ameliorating racial/ethnic disparities among children with autism.

To examine the effects of Medicaid Home and Community-based Services (HCBS) waivers on reducing racial/ethnic disparities in unmet need for services among families of children with autism spectrum disorder (ASD). Data from the 2003, 2007, and 2011 waves of the National Survey of Children's Health and the 2005 and 2010 waves of the National Survey of Children with Special Health Care Needs were used. Data on waiver characteristics were collected from source materials that were submitted in support of each state's waiver application. Waiver characteristics were combined to create a single waiver generosity variable. Quasi-difference-in-difference-in-difference models were used to determine the effect of waiver generosity on racial/ethnic disparities in unmet need among children with ASD. Increased waiver generosity was associated with significantly reduced odds of having unmet need for black children with ASD compared with white children with ASD. Unmet needs among black children with ASD were roughly cut in half, a 13 percentage point decrease, with the implementation of an average generosity waiver. No significant differences were seen for Hispanic ethnicity. These findings suggest that Medicaid HCBS waivers have the potential to ameliorate disparities in unmet need among children with ASD. Future policy development should focus on replicating the most effective characteristics of these waivers.

The Role of Choice and Control in the Impact of Autism Waiver Services on Family Quality of Life and Child Progress.

Home and Community-Based Services (HCBS) Waivers provide support and services to families with a child/youth with autism spectrum disorder (ASD). Research indicates HCBS Waivers are positively related to family quality of life (FQoL) and Child Progress. This study replicated and expanded prior research using propensity score matching of 460 families. Results support prior findings that HCBS waivers have a positive impact on FQoL and aspects of child progress. This study also found that having choices in the selection of services and service providers, as well as control over day-to-day provision of services, strengthened both the child and family impacts of the Waiver services. In addition, the study provides preliminary evidence for psychometric properties of a quick and inexpensive parent-report of ASD severity.

Medicaid Cost Trajectories for Children With Serious Emotional Disturbance: The HCBS Waiver Program Versus Targeted Case Management.

The study compared Medicaid cost-effectiveness for children with serious emotional disturbance receiving services from two programs operated by the New York State Office of Mental Health: the Home and Community-Based Services (HCBS) Waiver program and targeted case management (TCM). Children ages four to 18 who received services from the HCBS Waiver program (N=1,602) or TCM (N=2,740) during 2009-2012 were selected. A quasi-experimental study design with propensity score-matched comparison groups was used to examine Medicaid costs (per member per month [PMPM] total cost) before admission to and after discharge from the HCBS Waiver and TCM programs. Exponential smoothing models were used to examine Medicaid cost trends before and after each program. Difference-in-difference techniques were used to estimate the average annual difference in PMPM Medicaid cost. Trends for PMPM total Medicaid cost for HCBS Waiver-enrolled children after discharge decreased by 25%, whereas postdischarge costs for TCM-enrolled children increased by 15%. The adjusted pre-to-post difference in PMPM total Medicaid cost for HCBS Waiver children decreased by $498 and increased for TCM children by $448-a statistically significant decline of $946 (range $927-$963) in average PMPM Medicaid cost for HCBS Waiver children compared with TCM children. The PMPM Medicaid cost for children during HCBS Waiver enrollment was higher than for similar children enrolled in TCM. However, Medicaid cost savings for the HCBS Waiver group after the program may support investment in the more intensive HCBS Waiver program for children with comparable psychiatric needs.

Family perceptions of the impacts of a home and community based services autism waiver: Making family life possible.

An important mechanism that provides support and services for families with a child/youth with autism spectrum disorder is the home- and community-based services (HCBS) Waiver authorized by Section 1915(c) of the Social Security Act or Medicaid. This study used qualitative research methods to explore parent perspectives about the impact of HCBS Waiver services on the child/youth with autism and their family. In-depth interviews focused on aspects of the programme they valued, identification of barriers and general issues they experienced. Results of the qualitative study indicated that improved outcomes could be explained by providers of services who were well-trained, flexible and allowed parents' opportunities for choice regarding provision of services to meet child/youth and family needs. The findings of this study provide guideposts for further research about factors that contribute to satisfaction of families receiving waiver services for quality of life and child progress.

Participant Direction for People With Intellectual and Developmental Disabilities in Medicaid Home and Community Based Services Waivers.

Participant direction allows people with intellectual and developmental disabilities (IDD) and/or their families to direct services; in doing so, participant direction shifts participants from passive recipients to active consumers. Medicaid encourages, but does not require, states to allow participant direction. The aim of this study was to examine if and how states permitted participant direction in Medicaid HCBS 1915(c) waivers for people with IDD. We analyzed HCBS waivers from across the country to determine frequency of participant direction, expenditures directed toward participant direction, and states' goals for utilization of participant direction. Our findings revealed a disconnect between the large number of waivers that allowed participant direction, and states' extremely low goals for actual utilization of participant direction.

Occupational Therapy in Medicaid Home and Community-Based Services Waivers.

Medicaid Home and Community-Based Services (HCBS) 1915(c) waivers are the largest provider of long-term services and supports for people with intellectual and developmental disabilities (IDDs). In this study, we explored how HCBS IDD waivers projected providing occupational therapy services in Fiscal Year (FY) 2015. Medicaid HCBS IDD waivers across the nation gathered from the Centers for Medicare and Medicaid Services were qualitatively and quantitatively analyzed to determine how they projected providing occupational therapy services in terms of service expenditures and utilization. In FY 2015, $14.13 million of spending was projected for occupational therapy services of 7,500 participants. However, there was large heterogeneity across states and services in terms of total projected spending, spending per participant, and reimbursement rates. Comparisons across states strengthen the profession's ability to assert the value of its services. These findings can help identify best practices and can advocate for the refinement of state occupational therapy programs.

A National Analysis of Medicaid Home and Community Based Services Waivers for People With Intellectual and Developmental Disabilities: FY 2015.

Medicaid Home and Community Based Services (HCBS) 1915(c) waivers are the largest source of funding for the long term services and supports of people with intellectual and developmental disabilities (IDD). National-level analyses of HCBS IDD waivers are crucial because of the large variance across states, the recent CMS rule and regulation changes (CMS 2249-F/2296-F), and the ever changing economic and political landscape. Therefore, the aim of this study was to examine state waiver priorities for people with IDD. In FY 2015, 111 waivers projected spending $25.6 billion for approximately 630,000 people with IDD. The services with the most funding were residential habilitation, supports to live in one's own home, and day habilitation. However, our analysis revealed large discrepancies across states and services.

Sexual health in the community: Services for people with intellectual and developmental disabilities

BackgroundSexuality is a central dimension of overall health and well-being. People with intellectual and developmental disabilities (IDD) continue to experience disparities in healthcare, particularly regarding access to sexual health related services. Medicaid Home and Community-Based Services (HCBS) waivers are ideally situated to provide sexual and reproductive healthcare in accessible settings. ObjectiveThis preliminary study analyzed national Medicaid HCBS waivers to determine how they provide sexuality services for people with IDD. Methods111 FY 2015 HCBS 1915(c) waivers for people with IDD from 46 states and the District of Columbia were analyzed to determine which waivers were providing services related to sexuality. Expenditure and utilization data were analyzed to determine service allotment. ResultsCurrently, less than 12% of waivers include any kind of sexuality services, and those services provided are predominantly reactive, rather than proactive. Reactive services focused on interrupting sexually inappropriate behaviors through assessments and plans, intervention and therapy, and supervision. Meanwhile, proactive services promoted the healthy sexuality of people with IDD by providing sexuality education related to sexuality awareness, reproduction, and victimization avoidance. ConclusionsThe limited availability of Medicaid HCBS sexuality service provision not only hints at a lack of understanding of sexuality for people with IDD, but also presents an opportunity to perform increased evaluations on current service offerings in order to justify future expanded offerings in other states.