Care Transitions for Young Adults With Special Health Care Needs

ABSTRACT

Objectives: Over the past few decades, children who receive diagnoses that previously precluded long-term survival are living into adulthood. However, they now need to transition from pediatric to adult care providers. Multiple reports document gaps in how this transition occurs, especially for youth with special health needs (SHN). A Medicaid managed care plan (MCP) developed a pilot program for highest-risk youth (top 0.5%) with complex health care needs. The purpose was to address the gaps that exist in the transition of these youth from pediatric to adult care.

Study Design: The program model included these key points: no delegation, intensive case management by trained nurses/social workers, and support by plan senior leadership.

Methods: Steps to build the program addressed identified gaps, both internal and external to the plan. The model applied the Got Transition Six Core Elements, modified for an MCP.

Results: The first 2 patient case studies are presented. Their experiences outline challenges as well as successes. Twenty patients are now in the program. We anticipate adding more patients over the next 4 months—an accelerating growth curve, now that the pathway to meeting these young patients’ needs in adult care has been established.

Conclusions: Patient feedback and provider participation at all levels continue to improve how the program works. Through this program, plan patients and their parents have told us that the transition to adult care was more successful than they expected. Many youths with SHN could be helped if other MCPs instituted a model like this.

Am J Accountable Care. 2022;10(1):19-26. https://doi.org/10.37765/ajac.2022.88848

Pediatric specialty care has made notable achievements over the past few decades. Consequently, children who receive diagnoses that previously precluded long-term survival are now living well into adulthood. These laudable scientific gains have had a perhaps unforeseen outcome—children who in the past might spend their entire lives in a pediatric care system are now living long enough to need transition to adult care providers.

Data show that now more than 90% of children with chronic childhood illnesses reach the age of adulthood.¹ However, only up to 20% of such youth get any transition assistance when “aging out” of the pediatric system.² What are some of the issues that these youth need addressed? They include as follows:

• Who will pay for care after age 21?
• Where will the young adult be seen and by which primary care and specialty physicians?
• How will the parent and young adult let go of the relationships they have with their pediatric physicians?
• Who will find new adult health care providers for the young adults?
• Are such providers knowledgeable about diseases of young adults?
• Are they willing to accept increasing numbers of chronically ill youth who are aging out of the pediatric system?
• How are these issues affected by a payment structure such as a managed care delegated model, in which young adults are assigned to medical groups and independent practice associations (IPAs) for direct care?
• This is especially pertinent when IPAs, or even the overarching managed care plan, do not have contracts with tertiary/quaternary care providers.

A clinical review of this topic reveals numerous journal articles documenting concerns that transition raises in patients with medically complex or chronic illnesses. These include childhood cancer,³ cystic fibrosis,⁴ developmental disabilities,⁵ diabetes,⁶ HIV,⁷ inflammatory bowel disease,⁸ mental⁹ and neurologic¹⁰ problems, rheumatologic disorders,¹¹ sickle cell disease,¹² and tuberous sclerosis.¹³ The American Academy of Pediatrics¹⁴ and the Society for Adolescent Health and Medicine¹⁵ provide resources to assist with a successful transition. The Got Transition¹⁶ project, a federally funded national resource center, has developed Six Core Elements that address how to ensure successful transitions.¹⁷ The Got Transition website has become a core resource for many centers looking to develop a transition program. The Agency for Healthcare Research and Quality¹⁸ and CDC,¹⁹ as well as state and county health departments, in conjunction with federal Title V planning,²⁰ have also focused on this topic (E.M. Gabovitch, DPH, MPA, MA, teleconference, May 25, 2021; A. Long, PhD, DPH, teleconference, May 21, 2021).

However, none of these resources specifically addresses how a Medicaid managed care plan (MCP) should implement transition planning, particularly for youth with special health needs (SHN). Why should an MCP take this on, one might ask? Isn’t the purpose of the plan to pay for health care services? Don’t clinicians manage care?

In the past this has been the case, and perhaps it still is in some states. But in California, especially in the Medicaid managed care program, the managing of care is a key to a successful plan, not just financially but in particular for patients with SHN, via provision of case management services to streamline and remove barriers to care. We decided to use the Got Transition model to assist with developing a program for youth with SHN to effectively transition from pediatric to adult systems of care. We recognize that, due to the early nature of our program and lack of extended follow-up of patients at this time, this is one program’s “case study–type” report. However, because of the critical nature of this issue as more youth such as the ones we describe “age out” of the pediatric health care system, we have elected to present the data we currently have to bring further awareness of this issue to a national audience.

OBJECTIVES

The pilot program, Molina My Right Care (MMRC), led by plan clinicians and case managers, was created to address the ever-widening gap we saw in needs vs services in the adult health care setting for youth with SHN. Here is how it began—with a patient.

JR was a construction worker, aged 20 years, married with a new baby. He’d had a motorcycle crash that resulted in major arm injury—deep brachial artery laceration and through-and-through cuts of multiple right arm tendons. He received immediate high-level trauma care at an academic center. At discharge he was told he needed further specialized care to return to full function.

In California, California Children’s Services (CCS) is a state program that covers children and youth to age 21 years with chronic and complex conditions (funded jointly by state and federal funds). (See Sidebar 1 and Sidebar 2 for background information on Medi-Cal managed care and CCS.) JR’s care was initially covered by CCS. Because of the complex care needed, he was assigned a case manager, who worked with him while he was covered under CCS.

JR aged out of CCS when he turned 21. That left him with regular Medi-Cal managed care coverage. His county is delegated under our plan, so he was assigned to an IPA to manage his outpatient care.

The IPA sent him to 2 community orthopedists who each said that JR needed care that only a specialty center (center A) could provide. Because center A was not contracted with the IPA and its noncontract terms were expensive, the IPA referred JR to a different center: center B. The surgeon there also said that JR needed care at center A. So, the IPA approved a consult with center A’s surgeon.

The surgeon at center A examined JR. He said any more delay would further complicate the patient’s care. He even said he would schedule the patient on a Saturday to accommodate the patient. He submitted a prior authorization request to the IPA, but it was denied. The IPA said that JR needed to be seen by the previously approved network surgeons to ensure that they could not do the surgery, before approving center A.

By this time, JR was not just frustrated but in despair. We held a telephonic interdisciplinary care team (ICT) meeting with him at his request. He was asked to describe his major care concerns. As he did, he began to sob. He said he had not been able to work since the injury—almost 3 months—and he could not support his family. He just wanted his arm fixed. Our team medical director (MD) agreed. Our MD approved the surgery at center A so there would be no further care delay.

PROGRAM (STUDY) DESIGN

As a result of this and other similar cases, it became clear to our plan’s clinical team that, after aging out of CCS, young adults with the most complex medical conditions were falling through the cracks of our health care network. Their needed specialty care was not being provided adequately via their delegated IPAs.

This highest-need group was estimated to encompass the top 0.5% of our population of youth with complex health care needs. They made up approximately 6% of CCS patients, who needed active ongoing case management on an annual basis after aging out of CCS.

Led by our MD, we developed MMRC—intended to be a model program for patients like JR. In creating MMRC, we looked at the variety of clinical programs that exist to help youth with care transitions. Numerous children’s hospitals^21-24 have created formal transition programs for their patients. Others, such as Children’s Hospital Los Angeles²⁵ and Boston Children’s Hospital,²⁶ provide department-by-department transition assistance. Still others, such as University of California San Francisco²⁷ and Lucile Packard Children’s Hospital Stanford,²⁸ have specific disease-directed programs or guides for adolescents and young adults.

We also referred in detail to the Six Core Elements¹⁶ noted earlier. These 6 elements were developed for clinical programs, so we found that not all 6 applied directly to the development of an MCP transitions program. Therefore, we adapted the elements as needed to MMRC, using a similar structure but focusing on MCP-type activities rather than hospital or clinical practice ones (see eAppendix [available at ajmc.com] on transition activities).

In addition, we identified the following key components foundational to an MCP program model:

• Patients needed to be specifically managed by the plan, not delegated to an IPA, so we could authorize necessary care directly at tertiary care centers.
• We needed to provide intensive case management with nurses/social workers who would work with the patient and/or their parent to address any obstacles to care.
• We needed support from plan senior leadership.

All this had to be done in the context of patients losing their Medi-Cal eligibility, patients being reassigned to a different health plan once eligibility was regained, changing leadership at the plan, and moves by tertiary center champions to other institutions out of state—in short, the usual health care ups and downs.

METHODS

Persistence does pay off, or we wouldn’t have much of a story to tell! In 2019, our first 2 eligible patients turned 21 and aged out of CCS. For MMRC, our goals were that patients with complex health conditions would get the care they needed in the right setting without a lot of red tape—we wanted to cut through the usual barriers to care once they no longer had CCS coverage. We wanted to avoid delays in care and optimize their health status as best we could by having their intensive case manager (CM) work closely with the patient. The steps to meet these goals fell into place and, for the most part, aligned with the Six Core Elements.

Got Transition Element 1 is to develop a transition and care policy/guide. For MMRC, because only a small fraction of our total pediatric membership would be eligible, this consisted of developing clinical criteria for the program that outlined condition severity and complexity. We also established a senior leadership oversight team to ensure equitable application of criteria, with periodic meetings to discuss program updates, complications, and successes. We worked with plan staff to prepare patient and parent program brochures so eligible patients could read about MMRC and understand what it encompassed.

Element 2 calls for a flow sheet registry. We found that regularly updated Excel spreadsheets, along with biweekly multidisciplinary team (MDT) meetings, worked for us. In the MDTs, MMRC clinical leadership and CMs discuss each patient case, address any outstanding issues, and plan follow-up. These standing meetings, or email updates once the patients stabilize, are critical to ongoing team case management of the members and are a main difference between the Got Transition process and our program—MMRC does not end once there is a completed transition because the member’s clinical needs do not end there. As long as the patient’s clinical condition is active and they remain in the MCP, we continue to care for them in MMRC.

Element 3 assesses a patient’s readiness to transition to adult care. This is a component for which we found less congruence between our program and Got Transition. Because a major aspect of what MMRC provides is intensive case management, and because the patients being served are not typical youth moving from community pediatrics to comparable adult settings, a youth’s readiness to take over the responsibility for their adult care is not the initial key focus of the transition—instead, that focus is finding the specific care they need. Certainly, for youth capable of self-management, ongoing education is provided, and the CM gives regular pointers on how to self-advocate, organize and manage their daily care, make appointments, and more. But during the period of transition, ensuring that the patient gets the care they need is the goal.

Elements 4 to 6 include the planning, transfer, and completion of care transition. These did apply to our patients and can best be seen in our initial results, as follows.

INITIAL RESULTS

Case Study 1

Our first MMRC patient received a diagnosis of complicated mixed connective tissue disease as an adolescent. He had lost all his fingers to dry gangrene. He had kidney disease and pulmonary artery hypertension. Despite this, he was an easygoing, upbeat young man. After he aged out of CCS, he was willing to join MMRC so he could get integrated care. Until then, his primary care physician (PCP) and his specialists had not really communicated, so the former never seemed to know when he was hospitalized or what his medication doses were. We found this communication gap to be a typical problem for youth going from pediatric to adult health care. Consequently, as part of MMRC, we ensure that the PCP for each of our patients is affiliated with the facility where the specialty physicians work, has electronic health record (EHR) access, can message the specialists and make direct referrals, and the like. This helps avoid PCP–specialty physician miscommunication.

This patient demonstrated many challenges in the planning phase (Element 4) of his care. The initial tertiary care center with which we worked did not coordinate care very well, sometimes would not see him even after scheduling his appointments, and had a lot of turnover of our identified specialists. The transfer of care (Element 5) never seemed to be completed (Element 6). Fortunately, we were able to move him to another tertiary center in the region, and his care has been streamlined since then.

Lessons learned: Often, Medicaid MCPs cannot get contracts with tertiary care centers. This means we have to work with single case agreements. The centers are not really accustomed to these, and without ongoing diligence by the plan, patient care can be interrupted in spite of having these types of contracts. Trying to work with a specific group of primary care and specialty providers who become familiar with the special program, and educating patients about how their care is covered, can help overcome this access barrier—but it takes resolute planning (Element 4) to achieve it.

Case Study 2

Our second member was born with complex congenital heart disease. She was followed at a local children’s hospital for years. She developed sequelae including protein wasting and lymphoma. She was on daily total parenteral nutrition through a central line, received numerous medications by intravenous line and gastrostomy tube, and needed 10 hours per day of private duty nursing to administer these. She also received weekly blood product transfusions. Despite this support, in the year prior to MMRC, she had frequent hospital stays. When she aged out of CCS at 21 years, her care team was concerned about how transitioning to adult care would occur. They were extremely leery of any adult program being able to care adequately for this patient, whom they quite frankly had kept alive for the previous 10 years. However, their hospital licensure did not allow them to follow patients 21 years or older except for emergency circumstances. Thus, a transition plan had to be developed (Element 4).

Given how ill she had been, all options for the future were discussed with the patient multiple times. She quite clearly reiterated she was not ready to choose end-of-life care. The patient was very cognitively intact. When she wasn’t in the hospital, she was happy with her life—she read, went for short walks, and played on her computer.

Our challenge was to set up an adult care network near the patient’s home who could take over from the children’s hospital team. Each piece of her care had to be established before the children’s team would agree to transition her to an adult team. Additionally, the patient was very bonded to her children’s team. The ICT met with her to discuss transition plans, and she stated she couldn’t imagine going to other doctors. This team had taken care of her and seen her weekly for the past 10 years. But they explained they had no choice, so she agreed to try.

These are classic types of issues that patients with chronic childhood illness who transition to adult care must address. They encompass more subtle aspects of readiness (Element 3) that can complicate planning as well as successful transfer of care (Element 5).

We knew that we had to find comparable adult specialists who could care for our patient. Because of her complexity, we couldn’t merely refer the patient to these physicians once we found them. Our program MD called each of the physicians to discuss the patient and get their consent to follow her. After this, the PCP was identified. We found that the Internal Medicine–Pediatrics program at the center was an excellent PCP resource. Because our patient had never been cared for by anyone but a pediatrician, having a physician with pediatrics training seemed ideal; they would understand the developmental issues she faced from being chronically ill all her life. And having the internal medicine training would help as she developed complications more common to the adult population.

Once all the physicians were in place, we held our breath as we arranged first appointments for our patient. It became clear that fear of starting at a new center was a potential obstacle, so the patient’s nurse CM arranged to accompany her to the first appointments. This was also important so the CM could ask the questions identified as necessary to ensure that next steps for care were in place. The patient and her guardian (an older relative) were delighted to have the CM attend the first transfusion service, as well as the first PCP and cardiology visits. After that, amazingly, the patient said she felt comfortable enough to go alone to the subsequent specialty appointments. Readiness progress (Element 3)!

This transition took an incredible amount of planning to increase the likelihood of success for this fragile patient. Because our program was an MCP model, we had the ability to provide ongoing monitoring, with intensive case management and flexibility for financial remuneration to the superspecialists needed, leading to a greater likelihood of successful transition completion (Elements 5 and 6). This was hoped for, but until we saw it in person, we were not sure it would work.

And that wasn’t the only evidence of progress and success. In the 6 months prior to joining MMRC, the patient was hospitalized so many days at the children’s hospital that it cost the plan almost $1 million. In the 9 months after her transition, with intensive case management, hands-on interaction, and the ability to get care 20 minutes from her home instead of 2 hours away, she had only 1 hospital stay for sepsis, which cost the plan $13,000. And she reveled in her improved health status, spending more time at home instead of in the hospital.

Lessons learned: Relationships, as well as high-quality primary and specialty care, are key, especially for the most complex patients needing transition to adult care. Intensive case management is time consuming, but putting in the extra time needed to build patient trust is likely the only way a patient will comfortably move from a beloved pediatric team to a new adult team.

DISCUSSION

After these first 2 patients, MMRC has expanded to include 18 more patients for a total of 20. Five of these are in a special category for youth near end of life. All are youth who aged out of CCS and continue to need a higher level of care than that available in the adult community health setting. In addition, growth of the program is accelerating. Whereas in the first year of the program we went from 2 to 4 patients, in year 2 we have added 16 patients, 10 in the past 6 months. Our algorithm is based on problem solving on a case-by-case basis once a patient is identified as eligible for MMRC. In some ways this is improvisational, as each patient’s needs are unique, often requiring individual plan outreach to new specialists or different programs at tertiary care centers. But we continue to follow the blueprint that Got Transition and our first cases have established.

The model of using an MCP to facilitate the care transition of youth with SHN has unique pluses. Case management is already a known MCP function, so scaling this up to increase the intensity of services provided to these youth can be planned for based on patient numbers. Members usually continue in the plan regardless of aging past 21 years, so the MCP can ensure that ongoing care is provided in the pediatric and adult settings. The clinical leadership in the plan focuses on patient needs in the program. Therefore, as noted above in our case studies, our MD recruited and communicated patient details with new specialists and PCPs for each patient. The MMRC team ensured that any information needed about previous care, medical records requested, single case agreements, and so forth were in place as care began, facilitating many steps that would be challenging for individual PCPs or specialists in practice to carry out. And we specifically monitored visits via patient communication and EHR notes to ensure that appointments happened, saw what follow-up might be needed, and facilitated any next steps. We believe that this additional intense support has helped immensely in maintaining patient stability in the outpatient setting.

Limitations

As we continue to work on expanding and improving our pilot program, we are looking at how to quantitate any findings we establish. With our initial small N, our results currently are qualitative. Because we do not have a year’s worth of follow-up for most of the program members, we are still analyzing any possible outcomes, including overall savings generated. We recognize that our findings may end up being descriptive even after we do have longer follow-up, considering the small sample size.

But as we enter more patients into the program and have experience with them pre- vs post entry, we are collecting data about hospitalization frequency and cost, outpatient visits, and medications, as well as patient satisfaction with the program, so that our program can become even better. We are looking at lessons learned, as noted above, for future improvements.

CONCLUSIONS

One of the most important accomplishments of our program is that MMRC has become an established entity at our plan. Every senior leadership member is aware of the program. They each understand its importance in facilitating transition to adult care for complex youth aging out of the CCS program and their ongoing care thereafter. This is an important lesson learned—without the support of senior leaders at the plan, we couldn’t have had staff assigned to provide the level of intensive clinical support and case management that these complex patients needed.

In addition, we have developed workflows so new CMs know what their roles are. We have strengthened the relationships with our tertiary care centers. We have solidified the processes to set up single case agreements with members’ new physicians and facilities. All of these align with the Got Transition Six Core Elements.

We also know from the regular feedback received from our patients that we have made life easier for them. Repeatedly, both patients and parents have expressed how the transition has been much better than they ever expected. Another lesson learned: Parents want and appreciate having a specific touch point (their CM) to whom they can reach out when they have not received a needed prescription or an appointment with a specialist when they requested it. As noted earlier, this is a key resource that MCPs are particularly geared to provide.

MMRC has done something that every health care program should strive to do: addressed the needs of our most vulnerable patients and cut through any red tape, so the patient can get the right care when they need it. If this model were adopted by other MCPs across the country, the care transition of patients such as these would greatly improve. And the extended life expectancy that these youth have gained from pediatric technological improvements can continue as long as possible, with support from intensive case management, which values each patient and provides ongoing patient advocacy—something that never gets old, no matter what age our patients are.

Author Affiliation: Molina Healthcare (MDG, EJ, SK), Long Beach, CA.

Source of Funding: None.

Author Disclosures: Dr Giammona, Ms Jando, and Dr Khan are currently employed as staff at Molina Healthcare and own company stock.

Authorship Information: Concept and design (MDG, SK); acquisition of data (MDG, EJ); analysis and interpretation of data (MDG, SK); drafting of the manuscript (MDG); critical revision of the manuscript for important intellectual content (MDG, EJ, SK); statistical analysis (MDG); provision of study materials or patients (MDG); obtaining funding (MDG, SK); administrative, technical, or logistic support (MDG, EJ, SK); and supervision (MDG, SK).

Send Correspondence to: Mary D. Giammona, MD, MPH, Molina Healthcare, 200 Oceangate, Ste 100, Long Beach, CA 90802. Email: Mary.Giammona@molinahealthcare.com.

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