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

Keim‐Malpass, Jessica; Constantoulakis, Leeza; Letzkus, Lisa

doi:10.1377/hlthaff.2018.05413

Cited by 18 publications

(28 citation statements)

References 24 publications

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“…32,33 Reduced cost sharing likely improves access to primary care and preventive health services 34,35 while also potentially increasing hospital resource use. 36,37 Future research should further interrogate the relationship between Medicaid expansion in the ACA and intensive end-of-life care services for CAYAs with cancer.…”

Section: Discussionmentioning

confidence: 99%

Sociodemographic and hospital‐based predictors of intense end‐of‐life care among children, adolescents, and young adults with hematologic malignancies

Mun

Wang

et al. 2021

Cancer

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Background: Children, adolescents, and young adults with hematologic malignancies tend to receive high-intensity end-of-life care (HI-EOLC), but sociodemographic and hospital-based predictors of HI-EOLC remain unclear. Methods: The authors conducted a population-based, retrospective cohort study with the Premier Healthcare Database. They identified individuals with hematologic malignancies who were 0 to 39 years old at death and died between 2010 and 2017. HI-EOLC was defined as experiencing 2 or more of the following: cardiopulmonary resuscitation, intravenous chemotherapy, hemodialysis, mechanical ventilation, tracheostomy placement, or an emergency department visit within the last 30 days of life and death in the intensive care unit. Multivariable logistic regression models were constructed to identify patient sociodemographic and hospital characteristics associated with HI-EOLC. Results: Among 1454 decedents, more than half (55%) experienced HI-EOLC. In multivariable models, patients treated in medium (adjusted odds ratio [aOR], 1.63; 95% confidence interval [CI], 1.07-2.50) or large hospitals (aOR, 2.21; 95% CI, 1.45-3.39), insured by Medicaid (aOR, 1.40 ; 95% CI, 1.09-2.06), or receiving cancer-directed treatment in the Northeast (aOR, 1.50; 95% CI, 1.05-2.15) were more likely to receive HI-EOLC. Conclusions: A majority of children, adolescents, and young adults with hematologic malignancies experienced HI-EOLC, and the likelihood of HI-EOLC was influenced by the hospital size, type of insurance, and geographic region. Further research is needed to determine how to mitigate these risks.

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Section: Discussionmentioning

confidence: 99%

Sociodemographic and hospital‐based predictors of intense end‐of‐life care among children, adolescents, and young adults with hematologic malignancies

Mun

Wang

et al. 2021

Cancer

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“…This is a unique issue for families of newborns, where insurance coverage is not certain for days to weeks after birth. It is also unique for medically complex newborns, who may be awaiting confirmation of applications for private, public, and waiver coverage (28).…”

Section: Accepted Manuscriptmentioning

confidence: 99%

Costs of Neonatal Medical Complexity: Impact on New Parent Stress and Decision-Making

Miller¹,

Donohue

Seltzer

et al. 2022

Am J Perinatol

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Objectives: Parents of children with medical complexity experience substantial financial burdens. It is unclear how NICU clinicians prepare new parents of medically complex infants for this reality. This study explored new parent awareness of healthcare costs, desire to discuss costs with clinicians, and impact of costs on parents’ medical decision-making. Study Design: Semistructured interviews and surveys of parents of infants with medical complexity currently or previously in a NICU. Conventional content analysis was performed on interview transcripts and descriptive analyses were applied to surveys. Results: Thematic saturation was reached with 27 families (15 NICU families, 12 Post-NICU families) of diverse race/ ethnicity/ education/ household income. Most were worried about their infants current/ future medical expenses and approximately half wanted to discuss finances with clinicians, only one parent had. While finances were not part of most parent’s NICU decision-making, some later regretted this and wished cost had been incorporated into treatment choices. Family desire to discuss costs did not vary by family financial status. Parents described their infant’s healthcare costs as: “We are drowning;” and “We’ll never pay it off.” Conclusion(s): Most parents worried about current and future medical expenses related to their infant’s evolving medical complexity. Many wanted to discuss costs with clinicians; almost none had. NICU clinicians should prepare families for future financial realities of pediatric medical complexity.

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“…Each state's HCBS waiver program must be cost-neutral: that is, costs of the waiver program cannot exceed costs that would be incurred if the state did not have the waiver. 16 To achieve this cost-neutrality, states commonly use cost containment measures (e.g., waiting lists and individual cost limits). 16 , 20 Previous analyses have demonstrated large variability across states and the services they provide, revealing vast differences in total participants, average spending per participant, and total spending.…”

mentioning

confidence: 99%

“… 16 To achieve this cost-neutrality, states commonly use cost containment measures (e.g., waiting lists and individual cost limits). 16 , 20 Previous analyses have demonstrated large variability across states and the services they provide, revealing vast differences in total participants, average spending per participant, and total spending. 13 , 21 Friedman 13 found the HCBS I/DD waivers served an average of 12,784 participants a year per state and 563,116 unduplicated participants per year total in the United States.…”

mentioning

confidence: 99%

“…In a recent analysis of the scope of coverage and variability in states' coverage of children with medical complexity, with 1 being the highest coverage and 46 being the lowest coverage, NC was ranked 36. 16 In NC, open waiver slots occur infrequently because this only happens if the state creates more slots or the recipient moves, dies, or voluntarily leaves the program. Although nationally the average waiting time exceeds 2 years, 20 the NC I/DD Waiver waitlist is 7 to 10 years, 22 indicating that the need for these services far exceeds the currently available resources in NC.…”

mentioning

confidence: 99%

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

Franklin

Bush

Jones

et al. 2022

J Dev Behav Pediatr

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

Cited by 18 publications

References 24 publications

Sociodemographic and hospital‐based predictors of intense end‐of‐life care among children, adolescents, and young adults with hematologic malignancies

Sociodemographic and hospital‐based predictors of intense end‐of‐life care among children, adolescents, and young adults with hematologic malignancies

Costs of Neonatal Medical Complexity: Impact on New Parent Stress and Decision-Making

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

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