Navigating North Carolina’s Medicaid transformation: Caregivers’ perspectives through a family-centered lens

Abstract

Background

Medicaid provides health insurance for 40% of the United States (US) pediatric population. There is an increasing trend among states to transition from a fee-for-service model for Medicaid reimbursement to relying on risk-based delivery systems using Managed Care Organizations (MCOs). In 2021, most beneficiaries in North Carolina (NC) transitioned to one of five MCOs from Medicaid Direct. While research has examined the effects of these transitions, less is known on the impact of MCOs on the experiences of caregivers of children getting care for themselves and their children. This study aimed to explore the experiences of caregivers following the NC Medicaid Transformation, both in enrolling and accessing care for themselves, when applicable, and for their children.

Methods

We conducted a qualitative descriptive study to examine experiences of caregivers of children during the NC Medicaid Transformation. We identified participants from clinic sites and health services organizations in North Carolina. Nineteen caregivers participated in semi-structured interviews or a focus group. We conducted rapid qualitative analysis of transcripts for timely, action-oriented analysis. Rapid qualitative analysis involved developing a summary template with inductive domains from the interview guide categories.

Results

Among caregivers, all were mothers, and the majority resided in urban areas. Eleven caregivers were adult Medicaid beneficiaries in addition to their child receiving Medicaid. Caregivers described a variety of experiences and three themes were identified: increased obstacles among families with health conditions requiring additional care and non-English speakers; crucial role of clinical staff in navigating the transformation and accessing care; satisfaction with MCOs despite challenges.

Conclusions

Increasing access to specialty care by strengthening network adequacy standards, investing trained support staff within MCOs on how to best serve families with health conditions requiring additional care and non-English speaking families, and reimbursing clinical staff who are already performing a care management role, could positively impact families receiving care through Medicaid MCOs.

Keywords

Medicaid managed care organizations caregivers

Introduction

Medicaid provides health insurance for over 35 million low-income children, or 40% of US pediatric population, the majority who are covered through Managed Care Organizations (MCOs).^1,2 On 1 July 2021 North Carolina (NC) transitioned 1.6 million Medicaid beneficiaries from Medicaid Direct, a fee-for-service model, to one of five private MCOs under the 1115 waiver demonstration, also called Medicaid Transformation.³ While federal policies have promoted Medicaid MCOs since the 1980s, Medicaid MCO agreements became more common following the Affordable Care Act expansion in 2014, increasing in expansion and non-expansion states.^4,5 Managed care intends to control costs while maintaining quality through selective contracting with providers, financial incentives (e.g., bundled payments and capitation in contrast to fee-for-service model), and utilization management (e.g., prior authorization requirements, primary care gatekeepers).^4,6,7 Prior studies demonstrate mixed findings on access and quality of care and fewer studies have qualitatively examined the impact of managed care plans on Medicaid beneficiaries, with most focusing on perspectives of adult beneficiaries, Medicaid officials, and providers rather than on caregivers.^3,4,8–11

Understanding how caregivers navigate the MCO enrollment process and resultant access to medical care among families is crucial in evaluating the impact of an increasingly used healthcare delivery policy through a family-centered lens. Family-centered policies recognize the fundamental role of whole family units, or the members who define a family, and the interconnection of health and social-related needs among members.¹² For example, multiple states are implementing “two-generation” (2Gen) approaches across multiple sectors in order to benefit the caregiver and child.¹² These policies are especially important among Medicaid beneficiaries, who are more likely to experience health inequities of poorer health outcomes and less access to medical care compared to people with private insurance, and among children, whose caregivers interact directly with the healthcare system on their behalf and whose health is strongly influenced by the health of their caregivers.^13–16 Addressing these interconnected needs is inherently challenging when family members have different MCO plans and varying degrees of knowledge and support surrounding plans. Further, while presumed benefits of MCOs include reduced moral hazard, or overutilization of health services due to low cost-sharing, and increased consumer choice, this may not occur on the ground. For instance, insurer moral hazard, whereby MCOs increase earnings by denying coverage (e.g., denying prior authorizations and legitimate claims) has gained attention, with the federal government and states passing regulations to improve transparency.^17,18

We conducted a qualitative study to examine the experiences of caregivers of children following the NC Medicaid Transformation, both in enrolling and getting care for themselves, when applicable, and for their children. These findings help inform future implementation of MCOs and improve current delivery of care for families.

Methods

Study population

This study is part of a larger evaluation examining Medicaid beneficiaries experiences of enrolling and seeking care following the NC Medicaid Transformation.¹⁹ This current study focused on the experiences of caregivers of children seeking care for themselves and their children and was a subsample of interviews which included non-caregivers.

Participants were identified from clinic sites and health services organizations in North Carolina and recruited between January and May 2023. Flyers were sent to 227 medical and mental health clinics, health departments, Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) offices, and community centers. Interested Medicaid enrollees could reach out to the study team via phone, email, or by completing an eligibility screener on Qualtrics. The study staff screened each interested enrollee further over the phone to verify eligibility and obtain consent. Eligibility criteria included: caregivers were 18 years or older with a preferred language of English or Spanish; caregiver or child had NC Medicaid coverage in 2020 (pre-Transformation) and at the time of recruitment (post-Transformation); caregiver or child received medical care more than once in 2020 and since 1 July 2021. The study was approved by the University of North Carolina at Chapel Hill Institutional Review Board no. 20-0352.

Data collection

Nineteen caregivers of children participated in semi-structured interviews or focus group by Zoom after verbal consent was obtained. Fifteen semi-structured interviews were conducted in English. One focus group consisting of four caregivers was conducted in Spanish. Throughout data collection, we considered dimensions of information power (e.g., scope of the aim, sample specificity, quality of dialogue).²⁰ Based on preliminary analysis (e.g., memoing) and subsequent rapid analysis then confirmed by techniques of exploring outliers and rival hypothesis through discussion among authors in the context of participant characteristics, the interview process and content, and relationships of findings to other interviews, we found that the data were sufficient to support the themes identified. The interview guide was developed based on researchers’ knowledge of the Medicaid Transformation and literature review and was iteratively adapted during interviews. (Online Supplement section A) The interview guide consisted of five categories of questions: awareness of change; MCO experience; accessing needed care; additional benefits from prepaid health plans; care management. Interviews lasted up to 30 min (mean 23 min), were audio-recorded, and transcribed. The focus group lasted 29 min, was audio-recorded, transcribed into Spanish, and translated into English. Participants received a $50 gift card.

Data analysis

We analyzed data using rapid qualitative analysis which is designed to be deliberatively streamlined to meet a shorter time frame for actionable qualitative data.^21,22 Rapid qualitative analysis was conducted following interviews and involved developing a summary template with inductive domains from the interview guide categories. The first row of the template identified domains, and the following rows extracted key quotes and points from each interview. While focus groups are intended to create interactions and discussion among group members and are inherently different than semi-structured interviews, there was minimal dialogue among caregivers in the Spanish-speaking focus group. In the analysis for the focus group transcript, each participant had their own row in the Rapid Qualitative Analysis template and were summarized along with the semi-structured interviews, (e.g., each participant from the semi-structured interviews and focus groups had their own row in the template). Once summary consistency was established between two coders (M.A. and D.B.), the remaining transcripts were divided among them. Two team members (B.R. and M.A.) independently compared caregiver summaries across all domains. The team periodically met to discuss emerging themes, which were refined by the team until themes were finalized.

Results

Participant characteristics

Among 19 caregivers, all were mothers, with 12 (63%) residing in urban areas and 7 (37%) residing in rural areas. Eleven caregivers were adult Medicaid beneficiaries who also had a child on Medicaid, while eight caregivers only had children receiving Medicaid (e.g., they were not adult beneficiaries). Caregivers had a range of years with Medicaid coverage and represented four out of the six Medicaid regions within the state, covered by five Medicaid prepaid health plans. Two children out of 39 caregivers and children on Medicaid were covered by Medicaid Direct rather than an MCO, which provides services for beneficiaries with greater medical needs such as those requiring long-term services and support delivered in home and community settings, those with mental health disorders, substance use disorders, and intellectual disabilities.^23,24 (Table 1).

Table 1.

Participant characteristics.

Caregivers, n (%)	19
Caregiver medicaid coverage
Caregiver not covered by Medicaid	8 (42%)
Caregiver covered by Medicaid	11 (58%)
Number of children insured by Medicaid	28
Mean number of children per caregiver insured by Medicaid (min, max)	1 (1, 4)
Caregiver primary language (language in which interviews and focus group was conducted)
English	15 (79%)
Spanish	4 (21%)
Caregiver residence
Rural	7 (37%)
Urban	12 (63%)
Medicaid region^a
1	0 (0%)
2	4 (21%)
3	2 (10%)
4	6 (32%)
5	7 (37%)
6	0 (0%)
Average age in years (child)^b
	7
Children with health conditions requiring additional care
Yes	14 (50%)
No or unknown	14 (50%)
Health plan	Adult	Child
United Healthcare Community Plan	1	2
Healthy Blue	3	7
Carolina Complete	2	2
AmeriHealth Caritas	1	2
WellCare	4	11
Medicaid Direct	0	2
Unknown	0	2

^aSee Online Supplement section B for Standard Plan Regional Map.

^bThere were two children with missing ages.

Thematic findings

Caregivers revealed a variety of experiences in navigating North Carolina’s Medicaid Transformation for themselves and their children. Three themes were identified from transcripts: (1) increased obstacles among families with health conditions requiring additional care and non-English speakers; (2) crucial role of clinical staff in navigating the Transformation and accessing care; (3) satisfaction with MCOs despite challenges (Table 2).

Table 2.

Selected quotes from caregivers that illustrate study themes.

Themes	Illustrative quotes
Increased obstacles among families with health conditions requiring additional care and non-English speakers	“But to even try to inquire about different things in regards to their [two sons’] plan, I feel like I would probably, you know, hit a-a brick wall with that in regards to even getting a phone call back in a timely manner from their social worker…. I can’t even keep up with who his case workers are because they’re constantly changing, it seems like. So, I mean, that’s—you know, it’s one of those things. Like, is it really worth tryin’ to get in touch with a social work to ask a question, to see if there’s any changes in the policy or if there’s anything else I need to do? You know, I think it would be a more frustrating trip down that rabbit hole than it might be worth.” (ID 4)
	“It’s been challenging in some parts because a lot of the specialty ones don’t take Medicaid and don’t do the [MCO plan name], and/or don’t—won’t accept a referral from certain doctor’s offices.” (ID 22)
	“It took us almost 4 months to get in to a gastro doctor. And then when we got in to a gastro doctor, they would only see [child’s name] the first time…. because they didn’t take [MCO plan name]….then we ended up with, like, an out-of-pocket cost for that visit.” (ID 25)
	“You could (in the pre-transformation period) call Medicaid and say, ‘Hey, I went to the drug store and they said they couldn’t get my Medicaid to go through. But I know that I have it.’ and it would be no problem. You might be on the phone for an hour, but Medicaid is gonna get it fixed. [Plan Name]….there may be three or 4 days you go without medication because you’re still waitin’ for a representative to return your phone call if you had to leave a message if they were busy. Or the representative at the time wasn’t sure what was in your [plan name], so they need to look and give you a call back.” (ID 25)
	“They [speech therapist office] told me that they were going to call me if I qualify because I don’t know what type of Medicaid they were going to give….They don’t know what Medicaid he even had, and that, they were going to let me know, and so far, I’m still waiting, and I don’t know anything, and, well, I need, well, for my son to - to get those classes to help him with - with speech.” (ID FG/SP 3)
	“I don’t know why [children are on different plans]. I don’t know— the truth, I don’t know what benefits each has, and since they came in English, and the truth, well, I don’t know. I’m not too good at English.” (ID FG/SP 3)
	“They assigned me to the WellCare plan. And, well, I would [get] those things in English. So I don’t speak English, and I didn’t know what the benefits were.” (ID FG/SP 1)
Crucial role of clinical staff in navigating the transformation and accessing care	“Their primary care provider, if-if there’s a concern about somethin’, she’ll say, you know, “I’m gonna send you a referral to this one or that one.” Um, and that’s—it’s-it’s never really been an issue. It’s been pretty-pretty streamlined as far as that’s concerned.” (ID 4)
	“So they, the doctor’s office, took care of, like, the whole referral, where they were gonna send her to, and they sent me, they called me from the specialist and told me that, you know, they had received the referral, and I went there, and she got evaluated. So then, she—- her therapy started. So I feel like, I guess you can say the doctor’s office takes care of it— because they’re the ones who look for the place, and make sure, like, your insurance is covered by them, and um, then that place just calls you to make the appointment.” (ID 23)
	“There were a lot of, um, hurdles for—to get approved for the surgery, even approved for MRI or imaging, um, but the doctors seemed to know how to navigate it.” (ID 29)
	“Her pediatrician, she always helps me out because she has known her [daughter with autism] since she was born. She helps me with things that could benefit my daughter.” (ID FG/SS 4)
Satisfaction with MCOs despite challenges	“I mean, so far, with the plan that she has, it seems to cover all of her medical, dental, and vision needs as it is right now. So, I don’t think that I would, you know, search up lookin’ for a better policy because I’ve not had a problem with the policy that she has now.” (ID 4)
	“Medicaid helps with like that—with them not having to make decisions of, you know, getting their other needs that they need, or, you know, just having to-to think about those things. Cause it’s hard, it’s tough.” (ID 12)
	“Oh, geez, financially. I’m a single mom, so, um, that would definitely have an impact on me financially….A great impact on me. So I am grateful that we are allowed or able to get these services.” (ID 14)
	“I feel like having Medicaid opens the door to do a lot of what if I didn’t have Medicaid I wouldn’t want to ‘cause then I’ll have to obviously take it out of my pocket something I might not have or don’t have.” (ID 23)

Theme 1:

Increased obstacles among families with health conditions requiring additional care and non-English speakers.

Enrolling in plans and accessing care were more complicated for families when members had health conditions requiring specialist care or medication. Determining which plan best met their needs, and then obtaining approvals to access specialists and medications was more complex, frequently requiring multiple attempts and prolonged time spent by caregivers. The stakes were also described as higher, in that the deprivation of care and medications could have serious effects. For instance, a caregiver with epilepsy paid out-of-pocket for her antiepileptic medication while awaiting approval from her MCO plan as the medications covered by her plan were ones that had previously not worked for her. She narrated her experiences seeking care at the emergency department to obtain her medications:

“I mean, like, when I first got it, I couldn’t pay. I couldn’t get it. So I had to go up there to the emergency room, like, twice so I could get the medicine that I needed ’cause I couldn’t get it ’cause I couldn’t—you know, ’cause I couldn’t pay for it. So I had to go to the emergency room and sit in there for hours just to see a doctor to get it.” (ID 4)

Caregivers needing specialist care also described confusion among themselves and specialty offices about what services were in-network. This, at times, led to out-of-pocket charges despite initially being told that services were covered. One caregiver brought up how the multiple names for plans were confusing, such as the Local Management Entities (LME) assigned to manage behavioral health services for Medicaid beneficiaries. She described: “when I was searchin’ out somebody to get my son tested for Autism, when I was calling around and I—they would ask what his insurance policy was…. And I was like, '“Well, it was just Medicaid, that I know of. I don’t know of the specific type of policy.'” (ID 23).

Some caregivers contrasted the intricate process of accessing care on MCO plans with Medicaid Direct, a program for particular populations of NC Medicaid beneficiaries who are not enrolled in NC MCOs, and Medicaid pre-Transformation. A caregiver with two children with Autism on different Medicaid plans summed it up: “it’s so much simpler and so much like less stressful on me with the Medicaid Direct with my oldest son.” (ID 12).

Spanish-speaking caregivers with limited English proficiency faced unique barriers to accessing information about the Transformation and plan details as initial flyers arrived in English: “I don’t know what benefits each has, and since they came in English, and the truth, well, I don’t know.” (ID SS3) The same mother described being confused about why each of her children were placed on different plans. One bilingual caregiver described, however, that even with speaking English, “The problem was with the bureaucratic portion” (ID SS 3) as she spent days calling to verify that her child’s therapies would be covered.

Theme 2:

Crucial role of clinical staff in navigating the Transformation and accessing care.

Clinical staff acted as formal networks of support in navigating the Medicaid Transformation. They helped caregivers choose a plan, understand benefits, refer to in-network specialists, and request prior authorization for medications and imaging. Primary Care Providers (PCPs), in particular, were described as essential in ensuring patients received needed care after the implementation of the Transformation. One caregiver highlighted how their PCP was best positioned to meet their needs, in part, because she already had a relationship with the family:

“She (PCP) knows me and my daughter. She always try to make sure that she’s helping us and meetin’ our needs and she knows the insurance that we have. When she did a referral, she made sure that that doctor—that specialist…took our insurance.” (ID 13)

This relationship was particularly important to advocate for those needing specialty care. A caregiver of a child with a developmental delay explained how the primary care office staff handled the steps to receive her daughter’s services:

(The) doctor’s office took care of, like, the whole referral where they were gonna send her to, and they sent me, they called me from the specialist and told me that, you know, they had received the referral, and I went there, and she got evaluated….So I feel like, I guess you can say the doctor’s office takes care of it. (ID 23)

Others described how their providers wrote letters to managed care plans advocating for prior authorization for services and medications, as well as resending referrals and setting up therapies. For instance, the pulmonologist of one caregiver referred her to another specialist after the initial PCP referral was rejected. An occupational therapist working with a Spanish-speaking family whose child had autism also helped coordinate bilingual speech therapy services.

While clinical staff played a crucial role as unofficial care coordinators, this role was contrasted with the MCO support, such as care managers and other MCO representatives, who were at times difficult for families to reach and lacked the knowledge to support families. One caregiver described her experience of encountering inadequately informed MCO support when trying to enroll her children in plans:

“I tried calling a number, and it sent you to like the customer service representatives—they didn't have like the access to all of the information—they was just like, you know, “You just have to talk to your providers that you go to and ask them what they accept and what they take,” so it was like I had to do the work.” (ID 12)

Another caregiver with diabetes whose daughter had asthma described how “there may be three or four days you go without medication because you're still waitin' for a representative to return your phone call if you had to leave a message if they were busy. Or the representative at the time wasn't sure what was in your [MCO plan], so they need to look and give you a call back.” (ID 25)

Theme 3

Satisfaction with MCOs despite challenges

Almost all caregivers were satisfied with their Medicaid plan and grateful for the financial support Medicaid offered by covering their medical expenses. Overall caregivers described that their services were covered and their children and themselves could keep their PCP.

A couple of caregivers who had private insurance themselves or other children on private insurance differentiated the ease of Medicaid from the “hoops” that had to be jumped through to access care and the additional financial strain when covered privately. One caregiver contrasted the streamlined experiences accessing care for her Medicaid-insured younger sons with that of her privately insured older daughter, with stark differences surrounding the stress related to care costs.

Two caregivers stated that they would have been hesitant to receive needed medical care like gallbladder removal and spinal surgery for themselves due to costs that they could not afford had they not had Medicaid. Access to care was described as improving quality of life, permitting one caregiver to receive a needed spinal surgery: “I would have been just disabled (without the surgery) …I couldn’t stand up, and I couldn’t walk without pain.” (ID 29)

That Medicaid covered their health costs was described as crucial to their family’s wellbeing, allowing them to seek both medical care and prioritize their income for other needs. One mother who had two children with Autism summed up that without Medicaid it “would be such a struggle” but with the financial support from Medicaid, she could focus her attention on her children’s other needs:

“With them being autistic, and all the different things that they need, and the therapy is like weekly not like, you know, a every now and then doctors visit, like we would not be able to afford it. And I’d probably be bawling my eyes out every day, you know, ‘cause I would, as a parent, you know, I want my kids to have whatever they need to support them to be better and healthy, and, you know, mentally, physically, whatever kind of way.” (ID 12)

For many of the families in our study, Medicaid was depicted as a reliable resource and safety-net assisting when unforeseen life circumstances arose, such as losing a job and associated health insurance for the family.

Discussion

In this study, we examined the experiences of caregivers of children navigating the NC Medicaid Transformation from a fee-for-service to a MCO model for themselves and their children. Families of members with health conditions requiring additional care and specialist needs described increased obstacles in enrolling in care and accessing services and medications, as did non-English speakers. Caregivers narrated the vital role of clinical staff in advocating for them to support their medical needs. Despite these obstacles most caregivers were satisfied and appreciative of the financial support provided by Medicaid. This study contributes to the literature by highlighting caregiver experiences, including those who themselves are Medicaid beneficiaries, during the Medicaid Transformation, revealing potential approaches to improving experiences of families.

Our findings of difficulty accessing specialty services and obtaining medications, especially among families with additional healthcare needs, is consistent with findings from a related study that reported fears among key informants in the pre-implementation period that the complexity of five health plans would negatively impact access.²⁵ It is also consistent with prior work showing that Medicaid beneficiaries with high physical health care needs report challenges accessing services and medications, and prefer Medicaid Direct over MCOs.³ For instance, a quasi-experimental evaluation of Connecticut’s transition from private MCOs to a publicly run Medicaid program compared to a nearby state continuing to use MCOs demonstrated an increase in early-stage cancer diagnosis and cancer survival.²⁶ Another study found that Medicaid managed care was associated with greater caregiver frustration among all children and less access to mental health care among children with special healthcare needs.²⁷ An avenue to increase access to care is by strengthening network adequacy standards through limiting the number of beneficiaries per PCP and specialist, incorporating geographic distance between beneficiaries and providers into network design, and using wait time standards to understand access gaps.^28–31 Some states set limits on enrollee-to-PCP ratios but these limits vary widely from one PCP for every 100 beneficiaries in some states to one PCP for every 2,500 beneficiaries in others.³² Importantly, only providers actively seeing Medicaid beneficiaries should be included in these ratios. For instance, over 16% of physicians listed in Medicaid managed care plan provider network directories in Kansas, Louisiana, Michigan, and Tennessee qualified as “ghost” physicians, or physicians who never saw Medicaid beneficiaries when claims were reviewed.²⁸ “Artificial local provider deserts,” or areas without in-network providers despite providers being physically present in the area, are crucial to consider in network design, with rural areas particularly at risk as there is a small provider supply.³⁰ Capturing wait times in network adequacy standards is especially important because of the dynamic nature of provider networks, with providers entering and exiting networks and multiple plans relying on the same provider, which can affect availability.³¹

Our findings also highlight the importance of support staff to help decrease confusion and navigate initial enrollment in an MCO and assist with subsequent access to care and medications. The importance of bilingual support to people embedded in MCOs and clinics, interpreters, and translated materials was emphasized by Spanish-speaking caregivers lacking access to these services. The importance of bilingual support embedded within the healthcare system resonates with prior calls to build systems to support population health and care coordination rather than “digitalizing” the care experience.³³ There are several ways that formal support systems could be improved to decrease stress for families seeking care. One avenue is increased funding and training of formal support staff within MCOs that focuses on how to assist families with accessing specialty services and medications, and centrally within the Division of Health and Human Services (DHHS). Improved coordination between DHHS and other organizations, like the NC Navigator Consortium, a statewide network of federally qualified health insurance navigators, would assist families in selecting plans to meet their needs.³ Another method to provide ongoing support is to improve reimbursement mechanisms for clinicians and their staff for the “informal” work that they are doing to assist families. While currently in NC, practices can take part in the Advanced Medical Home (AMH) Tier 3 program in which clinics assume primary responsibility for care management, for many is it cost-prohibitive and time consuming. It involves substantial administrative effort involving contracting with each MCO plan, demonstrating the ability to provide care management, meeting quality metrics, and contracting on payment amounts. Another option under the AMH Tier 3 program is for clinics to become part of a “clinically integrated network,” which has its own staff who serves as care managers, creating yet another entity that families must interact with.^34,35

Other countries are increasingly introducing competition and privatization into healthcare systems or experimenting with its introduction.^7,36,37 In Germany, the Netherlands, and Switzerland, there has been resistance to managed care particularly regarding selective contracting of insurers with providers.⁷ In other countries, there have been concerns about poorer health outcomes. For instance, Italy implemented a natural experiment with privatization of healthcare among different regions which allowed a unique opportunity to compare outcomes, such as avoidable pediatric mortality from pertussis and measles.³⁷ Researchers found that greater investment in regional public healthcare delivery increased the rate of decline of avoidable mortality, with a slower rate of progress for private spending.³⁷ In the United Kingdom (UK), the National Health Services (NHS), is a universal, centrally funded healthcare system, but it is increasingly contracting out services to private hospitals.³⁶ The first evaluation of these NHS reforms found that there was a significant increased rate of avoidable mortality compared to the expected trend had reforms not occurred.³⁸

Caregivers who participated in this study were recruited through healthcare and public benefit offices and may have been more connected and aware of healthcare resources than those who did not participate. Focus group structure did not reveal many insights as a result of interactions between participants, so we may have obtained more information from each participant had we held individual interviews rather than the focus group. Our study was limited to English and Spanish-speaking caregivers and may not reflect the experiences of other linguistic backgrounds. Two Medicaid regions were not represented in interviews and caregivers may have had different experiences than represented regions. Finally, participants reflected on events that happened in the past, which may have implications for completeness and accuracy of information provided.

Conclusions

Caregivers in families with members who had medical conditions requiring additional care and non-English speaking caregivers faced challenges in enrolling in MCOs and accessing care. Clinical staff were crucial in navigating the NC Medicaid Transformation, and most families were satisfied with their plan despite the challenges. Increasing access to specialty care, investing in formal support people within MCOs trained to serve families with additional health needs and non-English speaking families, and reimbursing clinical staff already performing care management roles could positively affect the experiences of families receiving care through Medicaid MCOs.

Supplemental Material

Supplemental Material - Navigating North Carolina’s Medicaid transformation: Caregivers’ perspectives through a family-centered lens

Supplemental Material for Navigating North Carolina’s Medicaid transformation: Caregivers’ perspectives through a family-centered lens by Brittany J. Raffa, Monisa Aijaz, Brenda Amezquita-Castro, Paula H. Song, Valerie A. Lewis, Christopher M. Shea in Journal of Health Services Research & Policy.

Footnotes

ORCID iD

Brittany J. Raffa

Ethical considerations

University of North Carolina at Chapel Hill Office of Human Research Ethics, IRB no. 20-0352.

Author contributions

Brittany Raffa contributed to the conception and design of the study, interpreted the data, drafted the initial manuscript, and critically reviewed and revised the manuscript. Monisa Aijaz contributed to the conception and design of the study, coordinated and supervised data collection, interpreted the data, and reviewed and revised the manuscript. Brenda Amezquito-Castro coordinated and supervised data collection and critically reviewed and revised the manuscript. Paula H Song contributed to the conception and design of the study, coordinated and supervised data collection, and critically reviewed and revised the manuscript. Valerie Lewis contributed to the conception and design of the study, coordinated and supervised data collection, and critically reviewed and revised the manuscript. Christopher Shea contributed to the conception and design of the study, coordinated and supervised data collection and interpretation of data, and critically reviewed and revised the manuscript.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the NC Department of Health and Human Services, Division of Health Benefits, through contract #30-2021-017-DHB.

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data Availability Statement

For more information, including FAQs please . Research data is available upon request but transcripts are not shared due to confidentiality of participants and IRB requirements.

Supplemental Material

Supplemental material for this article is available online.

Appendix

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