Childhood disabilities and the cost of developmental therapies: the serviceprovider perspective.

PURPOSE: For children with neurodevelopmental disabilities (CWNDs), early diagnosis that leads to early intervention with regular targeted therapies is critical. In Qatar, private therapy centres that address this demand often have highly exclusive prices restricting families from availing them. This paper examines the challenges faced by families with CWNDs, as well as various financial and systemic obstacles, from the vantage point of these centres, all of which culminate in an extraordinarily high disability price tag for disability families in Qatar. METHODS: This study is based on qualitative, semi-structured, and in-depth interviews with private therapy centres and developmental paediatricians. RESULTS: Therapy centre representatives expressed common struggles in lengthy and cumbersome administration and licencing procedures, difficulty in hiring and retaining high quality staff, and expenses that need to be paid to the state. From their experience, families largely struggle with delayed diagnoses that significantly slow down intervention plans and therapies as well as staggeringly high financial costs with a dearth of funding options. CONCLUSIONS: We recommend sincere engagement, dialogue, and cooperation between multiple stakeholders; a supportive ecosystem to balance and distribute the demand that includes schools and parents; as well more efficient administrative procedures and recruitment strategies.

Attention-deficit/hyperactivity disorder and occupational outcomes: The role of educational attainment, comorbid developmental disorders, and intellectual disability.

BACKGROUND: Individuals with ADHD are at increased risk for poor occupational outcomes. Educational attainment and psychiatric comorbidity may be important contributing factors for these outcomes, but the role of these factors is not well characterized. This study aimed to investigate the associations between ADHD and occupational outcomes, and to examine the influence of educational attainment, comorbid developmental disorders and intellectual disability on these associations. METHODS: We linked the Swedish population graduating from compulsory school 1998-2008 (N = 1.2 millions) to population-wide register-based data on clinical psychiatric diagnoses and medications, objective annual measures of educational, and occupational outcomes. Individuals were followed for between 6 to 16 years after graduation. RESULTS: Individuals with ADHD had annually on average 17 percent lower income, ratio = 0.83 (95% CI 0.83-0.84), 12.19 (11.89-12.49) more days of unemployment, and a higher likelihood of receiving disability pension, odds-ratio = 19.0 (18.4-19.6), compared to controls. Comorbid diagnoses of intellectual disability and developmental disorder explained most of the association between ADHD and disability pension, while lifetime educational attainment partially explained associations between ADHD and all occupational outcomes. Analyses of occupational trajectories found that income was lower and unemployment elevated relative to controls with the same educational attainment. Higher educational attainment correlated with higher income similarly among individuals with ADHD and controls after accounting for individual background factors. CONCLUSIONS: The occupational burden associated with ADHD is substantial. Comorbid developmental disorders, intellectual disability and educational difficulties (e.g., failing grades) from childhood to adulthood are important factors to consider when designing interventions to improve occupational outcomes in individuals with ADHD.

Adaptive innovations to provide services to children with developmental disabilities during the COVID-19 pandemic.

Children with developmental disabilities are experiencing significant challenges to service access due to suspension of in-person assessments during the current COVID-19 pandemic. Telehealth is rapidly becoming the new service delivery model, which presents a unique opportunity for innovation in care that could be beneficial in the post-pandemic period. For example, using a combination of in-home video and telehealth options could form the first step in developmental assessment, allowing children to receive the necessary supports without delay. Recent telehealth funding is welcome but additional Medicare items for joint consultations including general practitioners (GPs), and paediatric, mental health and allied health professionals is critical.

Disability, Hospital Care, and Cost: Utilization of Emergency and Inpatient Care by a Cohort of Children with Intellectual and Developmental Disabilities.

OBJECTIVE: To use medical claims data to determine patterns of healthcare utilization in children with intellectual and developmental disabilities, including frequency of service utilization, conditions that require hospital care, and costs. STUDY DESIGN: Medicaid administrative claims from 4 states (Iowa, Massachusetts, New York, and South Carolina) from years 2008-2013 were analyzed, including 108 789 children (75 417 male; 33 372 female) under age 18 years with intellectual and developmental disabilities. Diagnoses included cerebral palsy, autism, fetal alcohol syndrome, Down syndrome/trisomy/autosomal deletions, other genetic conditions, and intellectual disability. Utilization of emergency department (ED) and inpatient hospital services were analyzed for 2012. RESULTS: Children with intellectual and developmental disabilities used both inpatient and ED care at 1.8 times that of the general population. Epilepsy/convulsions was the most frequent reason for hospitalization at 20 times the relative risk of the general population. Other frequent diagnoses requiring hospitalization were mood disorders, pneumonia, paralysis, and asthma. Annual per capita expenses for hospitalization and ED care were 100% higher for children with intellectual and developmental disabilities, compared with the general population ($153 348 562 and $76 654 361, respectively). CONCLUSIONS: Children with intellectual and developmental disabilities utilize significantly more ED and inpatient care than other children, which results in higher annual costs. Recognizing chronic conditions that increase risk for hospital care can provide guidance for developing outpatient care strategies that anticipate common clinical problems in intellectual and developmental disabilities and ensure responsive management before hospital care is needed.

Employment Outcomes After a Birth of a Child with a Developmental Disability: A National Nested Case-Control Study.

Using records from the National Insurance Institute of Israel, we recognized all children with autism spectrum disorders (ASD, N = 8072) or hearing loss (HL, N = 2231) born in Israel between 2005 and 2010. Typical developed children were taken from a random 20% sample of children born during the same years (N = 227,492). Analyses were adjusted for year of birth, population group, parental ages, parental education, child birth order and peripherality. Working women, who gave birth to children with either ASD or HL, were at increased risk of not maintaining their working status over the 5 years after birth. There is a decreased ratio between household wage after and before birth, in families with children with either ASD or HL.

Engaging Families in Employment: Individuals and Families' Retrospective Transition Experiences With Employment Services.

In the United States, employment experiences of people with intellectual and developmental disabilities (IDD) have been dominated by discrepancies between recent policy shifts promoting integrated employment for people with IDD and the stagnation of the employment rate in integrated settings for this population. Although there is no direct source for labor force participation for individuals with IDD in the general population, data from the National Core Indicators Project suggest that, in 2015-2016, only 19% of working-age adults supported by state IDD agencies worked in one of the three forms of integrated employment-group-supported, individual-supported, or competitive (individualized and without supports). Twelve percent (12%) worked in competitive or individual-supported employment, and 7% worked in group-supported employment (Hiersteiner, Bershadsky, Bonardi, & Butterworth, 2016). In addition, individual employment supports have not been implemented with fidelity to a consistent model or set of expectations, and participation in nonwork services has grown rapidly (Domin & Butterworth, 2013; Migliore et al., 2012; Winsor et al., 2017).

Identifying Predictors for Enhanced Outcomes for People With Intellectual and Developmental Disabilities.

People with intellectual and developmental disabilities (IDD) often rely on Medicaid-funded services and supports to facilitate their daily living. The financial investment for these services is significant, yet little work has been conducted to understand how these investments affect life outcomes. This pilot study used a novel data integration approach to offer initial insights about how Medicaid expenditures relate to outcomes using Medicaid claims data, results of the National Core Indicators consumer survey, and data from the Supports Intensity Scale (SIS). Findings suggested that subpopulations of people with IDD who also had high behavioral needs or high medical needs had significantly higher expenditures than individuals with more typical SIS-assessed support needs. Regression analyses suggested mixed outcomes based on the factors we considered, including a finding that people with IDD who lived in sponsored residential care homes were more likely to engage in inclusive activities in the community than those who lived in larger congregate settings, or those who lived in a family home. Results of this pilot, when brought to scale, will be useful in examining the performance of state IDD service systems over time.

Health Care Use and Spending of Pediatric Patients With an Intellectual or Developmental Disability.

BACKGROUND: Health care costs and utilization for those with an intellectual or developmental disability (IDD) have been shown to be higher than the general population. OBJECTIVE: To investigate the services that contribute to higher costs and utilization among noninstitutionalized children with an IDD. DESIGN: Matched case-control secondary analysis of the 2000-2017 Medical Expenditure Panel Survey. Pediatric (age 0-21) patients with an IDD were matched to non-IDD subjects. Health care utilization and costs were evaluated with zero-inflated negative binomial regressions and generalized linear models, respectively. MEASURES: Outcome measures included high-acuity health care utilization [ie, emergency department (ED) visits and hospital admissions], and cost outcomes for total spending, ED use, hospitalization, medications, office visits, home health, and physical therapy. RESULTS: There was no statistical difference in utilization of EDs among the 2 groups though subjects with an IDD showed more hospitalizations than their matched cohort (incidence rate ratios=1.63, P=0.00). Total health care spending was higher among patients with an IDD (coefficient=$5831, P=0.00). Pediatric spending was higher in all measures except for ED. The biggest discrepancies in spending were seen in home health (coefficient=$2558, P=0.00) and outpatient visits (coefficient=$1180, P=0.00). CONCLUSIONS: Pediatric patients with an IDD had higher health care spending and utilization than non-IDD subjects in all categories except for ED use.

Exploring the Valley of Savings: Minimizing Part D Costs and Optimizing Drug Therapy Outcomes in Medicare Beneficiaries With Developmental Disability.

Nonelderly disabled Medicare beneficiaries have a higher prevalence of chronic conditions, higher utilization of prescription medications, and increased demand for clinical services when compared to beneficiaries 65 years of age and older who are not disabled. Out-of-pocket costs and medication-related problems are major barriers to medication compliance and achievement of therapeutic goals. A school of pharmacy partnered with a nonprofit organization that provides care to individuals with developmental disabilities. The present study highlights outcomes resulting from (a) providing Medicare Part D plan optimization services to lower prescription drug costs and (b) Medication Therapy Management services to evaluate safe and effective medication use in this beneficiary population. Provided interventions were shown to reduce overall medication costs and identify significant medication-related problems.

Depressive Symptoms and Care Demands Among Primary Caregivers of Young Children with Evidence of Congenital Zika Virus Infection in Brazil.

OBJECTIVE: Evidence suggests that caring for a child with special health care needs can affect many domains of family life, including caregiver mental health. However, few studies have examined these outcomes among families impacted by the Zika virus (ZIKV). This study examines depressive symptom severity and care demands among primary caregivers of children, aged 15 to 26 months, with evidence of congenital Zika virus infection (ZVI). METHODS: A sample of primary caregivers of children with evidence of congenital ZVI in northeastern Brazil (n = 150) reported on depressive symptoms, care demands, and their children's development. Children were categorized into groups according to their developmental delay status. Bivariate analyses were run to test for differences between groups. A path analysis model was used to examine the indirect effects of developmental delay on depressive symptoms through economic challenges and time spent providing health care at home and whether these associations varied by child care support. RESULTS: Compared to primary caregivers of children without developmental delay, primary caregivers of children with developmental delay had higher depression scores (p = 0.002), reported more economic (p < 0.001) and child care (p < 0.001) challenges, and spent more time providing health care at home (p < 0.001). Among primary caregivers who did not have child care support, developmental delay had a significant indirect effect on depressive symptoms through economic challenges but not through time spent providing health care at home. CONCLUSION: For families impacted by the ZIKV outbreak in Brazil, economic and child care challenges may be associated with primary caregiver mental health.

Hypothermia for perinatal asphyxia: trial-based resource use and costs at 6-7 years.

OBJECTIVE: To assess the impact of hypothermic neural rescue for perinatal asphyxia at birth on healthcare costs of survivors aged 6-7 years, and to quantify the relationship between costs and overall disability levels. DESIGN: 6-7 years follow-up of surviving children from the Total Body Hypothermia for Neonatal Encephalopathy (TOBY) trial. SETTING: Community study including a single parental questionnaire to collect information on children's healthcare resource use. PATIENTS: 130 UK children (63 in the control group, 67 in the hypothermia group) whose parents consented and returned the questionnaire. INTERVENTIONS: Intensive care with cooling of the body to 33.5°C for 72 hours or intensive care alone. MAIN OUTCOME MEASURES: Healthcare resource usage and costs over the preceding 6 months. RESULTS: At 6-7 years, mean (SE) healthcare costs per child were £1543 (£361) in the hypothermia group and £2549 (£812) in the control group, giving a saving of -£1005 (95% CI -£2734 to £724). Greater levels of overall disability were associated with progressively higher costs, and more parents in the hypothermia group were employed (64% vs 47%). Results were sensitive to outlying observations. CONCLUSIONS: Cost results although not significant favoured moderate hypothermia and so complement the clinical results of the TOBY Children study. Estimates were however sensitive to the care requirements of two seriously ill children in the control group. A quantification of the relationship between costs and levels of disability experienced will be useful to healthcare professionals, policy makers and health economists contemplating the long-term economic consequences of perinatal asphyxia and hypothermic neural rescue. TRIAL REGISTRATION NUMBER: This study reports on the follow-up of the TOBY clinical trial: ClinicalTrials. gov number NCT01092637.

High health care costs among adults with intellectual and developmental disabilities: a population-based study.

OBJECTIVE: While it is generally accepted that adults with intellectual and developmental disabilities (IDDs) use health services to a greater extent than the general population, there is remarkably little research that focuses on the costs associated with their health care. Using population-based data from adults with IDD in Ontario, this study aimed to estimate overall health care costs, classify individuals into high and non-high cost categories and describe differences in the demographics, clinical profiles and health care use patterns between these groups. DESIGN: A retrospective cohort study based in Ontario, Canada, was conducted with the use of linked administrative health data. METHODS: A costing algorithm developed for the general population in Ontario was applied to estimate health care costs of adults with IDD under age 65 for 2009 and 2010. Individuals were categorised into two groups according to whether their total annual health care costs were among the highest decile in the general population. These groups were compared on demographic and clinical variables, and relative mean costs for six types of health care services in the two groups were computed. In addition, we computed the proportion of individuals who remained in the high cost group over 2 years. RESULTS: Among adults with IDD, 36% had annual health care expenditures greater than $2610 CAD (top decile of all Ontario adults under 65). These individuals were more likely to be female, to be in the oldest age groups, to live in group homes and to be receiving disability income support than individuals whose expenditures were below the high cost threshold. In addition, they had higher rates of all the physical and mental health conditions studied. Greatest health care expenses were due to hospitalisations, especially psychiatric hospitalisations, continuing care/rehabilitation costs and medication costs. The majority of individuals whose health care costs placed them in the high cost category in 2009 remained in that category a year later. DISCUSSION: Adults with IDD are nearly 4 times as likely to incur high annual health care costs than those without IDD. Individuals with IDD and high health care costs have unique health and demographic profiles compared with adults with IDD whose annual health care costs are below the high cost threshold. Attending to their health care needs earlier in their health care trajectory may be an opportunity to improve health and reduce overall health care costs. It is important that we explore how to best meet their needs. Models proposed to meet the needs of adults with high health care costs in the general population may not apply to this unique group.

Association of state-level and individual-level factors with choice making of individuals with intellectual and developmental disabilities.

BACKGROUND: State-level factors have not been examined in research on choice, despite findings of between-state differences. AIMS: To examine both individual and state-level factors associated with choice. METHODS AND PROCEDURES: We used multilevel modeling to explore two choice scales, support-related and everyday choice, based on the National Core Indicators (NCI) data from 2013-14. OUTCOMES AND RESULTS: At the individual level, milder ID, greater mobility, fewer problem behaviors, answering questions independently, communicating verbally, and living in a non-agency setting, particularly independent settings, were associated with more choice for both scales. State-level factors overall explained variance for both scales, but were more strongly associated with support-related choice. A higher proportion of people with IDD living independently within the state predicted more support-related choice. High cost of living within a state predicted less everyday choice. Higher proportion of people living with family and lower proportion being served within a state predicted more everyday choice. CONCLUSIONS AND IMPLICATIONS: These findings suggest further study of choice in relation to policies that: (1) increase independent living for individuals with IDD, and (2) assist individuals/families living in high cost states. State differences on important QOL outcomes are likely to be associated with economic and system-based factorsbeyond individual differences.

Exploring Retirement for Individuals With Intellectual and Developmental Disabilities: An Analysis of National Core Indicators Data.

To begin to understand retirement, we examined age-related differences in (a) employment rates, employment hours, and rates of individual-plan employment goals; and (b) participation rates in unpaid formal day programs. We report weighted analyses of 2014-15 National Core Indicators data from 32 states. Unlike younger age groups, a similar proportion of workers with intellectual and developmental disabilities continued working beyond age 65 as for the general community. We found that most workers with intellectual and developmental disabilities retire in older age and that their retirement appears to be sudden, rather than a gradual reduction in work hours. Facility-based day programs were the only program with an increased participation rate in older age groups, revealing an even greater reliance on facility-based services for older participants.

Array CGH como primera opción en el diagnóstico genético: 1.000 casos y análisis de coste-beneficio / Comparative genomic hybridisation as a first option in genetic diagnosis: 1.000 cases and a cost-benefit analysis

FUNDAMENTO Y OBJETIVO: La citogenética convencional detecta un 3-5% de los pacientes con retraso global del desarrollo/discapacidad intelectual y/o malformaciones congénitas. La amplificación de sondas múltiples dependientes de ligación permite incrementar la tasa diagnóstica entre 2,4-5,8%. Actualmente, los arrays de hibridación genómica comparada o aCGH son la herramienta diagnóstica con mayor rendimiento en estos pacientes, en malformaciones congénitas y trastornos del espectro autista. El objetivo del presente trabajo ha sido evaluar la eficiencia del uso del aCGH como técnica de primera línea diagnóstica en estas y otras indicaciones (epilepsia, talla baja). Pacientes y método: Se ha estudiado a 1.000 pacientes afectados por las patologías mencionadas mediante la técnica de aCGH. Resultados: Se detectaron desequilibrios de efecto patogénico en un 14% de los pacientes (140/1.000). Según el fenotipo, se diagnosticaron un 18,9% de los pacientes afectados de retraso global del desarrollo/discapacidad intelectual; un 13,7% de las malformaciones congénitas; un 9,76% de las patologías psiquiátricas, un 7,02% de los casos con epilepsia y un 13,3% de los pacientes con talla baja. Dentro de las malformaciones congénitas destacan las del sistema nervioso central con un 14,9% y las cardiopatías congénitas con un 10,6% de diagnósticos. En las patologías psiquiátricas destacan los pacientes con trastornos del espectro autista, con un 8,9% de diagnósticos. Conclusiones: Nuestros resultados demuestran la efectividad y la eficiencia de la utilización del aCGH como test de primera línea en el diagnóstico genético de los pacientes con sospecha de desequilibrios genómicos. Todo ello avala su inclusión dentro del Sistema Nacional de Salud

BACKGROUND AND OBJECTIVE: Conventional cytogenetics diagnoses 3-5% of patients with unexplained developmental delay/intellectual disability and/or multiple congenital anomalies. The Multiplex Ligation-dependent Probe Amplification increases diagnostic rates from between 2.4 to 5.8%. Currently the comparative genomic hybridisation array or aCGH is the highest performing diagnostic tool in patients with developmental delay/intellectual disability, congenital anomalies and autism spectrum disorders. Our aim is to evaluate the efficiency of the use of aCGH as first-line test in these and other indications (epilepsy, short stature). PATIENTS AND METHOD: A total of 1000 patients referred due to one or more of the abovementioned disorders were analysed by aCGH. RESULTS: Pathogenic genomic imbalances were detected in 14% of the cases, with a variable distribution of diagnosis according to the phenotypes: 18.9% of patients with developmental delay/intellectual disability; 13.7% of multiple congenital anomalies, 9.76% of psychiatric pathologies, 7.02% of patients with epilepsy, and 13.3% of patients with short stature. Within the multiple congenital anomalies, central nervous system abnormalities and congenital heart diseases accounted for 14.9% and 10.6% of diagnoses, respectively. Among the psychiatric disorders, patients with autism spectrum disorders accounted for 8.9% of the diagnoses. CONCLUSIONS: Our results demonstrate the effectiveness and efficiency of the use of aCGH as the first line test in genetic diagnosis of patients suspected of genomic imbalances, supporting its inclusion within the National Health System

Restraint, Restrictive Intervention, and Seclusion of People With Intellectual and Developmental Disabilities.

Restraint, restrictive interventions, and seclusion are hotly contested practices with inconclusive evidence of their effectiveness. Because the use of restraint and seclusion on people with intellectual and developmental disabilities (IDD) is controversial and its effectiveness doubtable, this study was conducted to explore if and how they were permitted in Medicaid HCBS 1915(c) waivers, the largest providers of long-term services and supports (LTSS) for people with IDD. To do so, 111 fiscal year 2015 IDD waivers from across the nation were examined to determine if and how states permitted restraint, restrictive interventions, and seclusion. Findings revealed an overwhelming majority of waivers permitted the use of restraint (78.4%) and restrictive interventions (75.7%). A smaller proportion (24.3%) allowed the use of seclusion.

Health Services Use and Costs for Americans With Intellectual and Developmental Disabilities: A National Analysis.

Health services and associated costs for adults with intellectual and developmental disabilities (IDD) were nationally profiled and the predictors of high expense users statistically modeled. Using linked data from the National Health Interview Survey and Medical Expenditure Panel Survey for the years 2002 through 2011, the study found a mixed pattern of differences in rates of service use and costs when compared to the general population depending upon personal characteristics, health status, and type of health care service. Prescription medication costs were the primary driver of total health care expenditures for Americans with IDD. The presence of secondary chronic health conditions and poor mental health status were the consistent predictors of high expense users across types of health care. Study results are discussed in terms of implications for more nuanced evaluations of health care costs and need for recurring surveillance of health care for Americans with IDD in the years following passage of the Patient Protection and Affordable Care Act.

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.

The relationship of undernutrition/psychosocial factors and developmental outcomes of children in extreme poverty in Ethiopia.

BACKGROUND: Extreme poverty is severe deprivation of basic needs and services. Children living in extreme poverty may lack adequate parental care and face increased developmental and health risks. However, there is a paucity of literature on the combined influences of undernutrition and psychosocial factors (such as limited play materials, playground, playtime, interactions of children with their peers and mother-child interaction) on children's developmental outcomes. The main objective of this study was, therefore, to ascertain the association of developmental outcomes and psychosocial factors after controlling nutritional indices. METHODS: A community-based cross-sectional study design was used to compare the developmental outcomes of extremely poor children (N = 819: 420 girls and 399 boys) younger than 5 years versus age-matched reference children (N = 819: 414 girls and 405 boys) in South-West Ethiopia. Using Denver II-Jimma, development in personal-social, language, fine and gross motor skills were assessed, and social-emotional skills were evaluated using the Ages and Stages Questionnaires: Social-Emotional (ASQ: SE). Nutritional status was derived from the anthropometric method. Independent samples t-test was used to detect mean differences in developmental outcomes between extremely poor and reference children. Multiple linear regression analysis was employed to identify nutritional and psychosocial factors associated with the developmental scores of children in extreme poverty. RESULTS: Children in extreme poverty performed worse in all the developmental domains than the reference children. Among the 819 extremely poor children, 325 (39.7%) were stunted, 135 (16.5%) were underweight and 27 (3.3%) were wasted. The results also disclosed that stunting and underweightness were negatively associated with all the developmental skills. After taking into account the effects of stunting and being underweight on the developmental scores, it was observed that limited play activities, limited child-to-child interactions and mother-child relationships were negatively related mainly to gross motor and language performances of children in extreme poverty. CONCLUSION: Undernutrition and psychosocial factors were negatively related to the developmental outcomes, independently, of children living in extreme poverty. Intervention, for these children, should integrate home-based play-assisted developmental stimulation and nutritional rehabilitation.

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.