The Postpediatrician Transition

Preface

Medical providers accustomed to treating adults often lack appropriate training and sufficient understanding of how children, adolescents, and young adults with special health care needs or disabilities are impacted over their life span. Situational barriers within practice settings further exacerbate problems associated with providing these patients with quality care with dignity—including inadequate time and reimbursement, limited provider training in or knowledge of adolescent and young adult disorders, and a lack of access to specialty resources. In adult-oriented practice settings where patients are expected to function autonomously and independently, it is often challenging to accommodate families and caregivers, even though they frequently accompany patients with disabilities and play important roles in achieving good health outcomes (Hait, Arnold, & Fishman, 2006; Lugasi, Achille, & Stevenson, 2011; Madge & Bryon, 2002; Rosen, 1995; Sawyer & Aroni, 2005).

There are numerous reasons why individuals with developmental disabilities or other special health care needs experience difficulty finding appropriate providers (Herzer, Goebel, & Cortina, 2010; Reiss, Gibson, & Walker, 2005). What follows is a description of barriers in care coordination and transition for this population. This includes a discussion of organization, communication, and training barriers that result from our current bifurcated system of health care delivery in which pediatric medicine does not smoothly link up with the medical care received by adults. We then present a detailed literature review of the medical home model. Originally, the medical home model defined the practice where children with special health care needs (CSHCN) received their care and where their medical records were kept, and over time, the model has expanded to include nonmedical care. Despite recommendations by the American Academy of Pediatrics (AAP) among others to collocate providers, or assumptions that family-centered care will improve transitions, little progress has been made, in particular for youths and children with less complex medical needs (McManus et al., 2013; Scal & Ireland, 2005).

We make a case for the reconceptualization of the medical home model with a life span perspective. A life span approach supports not only the advances in medicine over the past 50 years but recognizes the abilities of these individuals to participate in school, work, and community. Providers who adopt a life span perspective have the direct knowledge and support of others on the medical home team to provide medical care and coordination of services over the entire developmental spectrum as these children transition to adulthood. This reconceptualization of the medical home model fits appropriately with the needs and interests of this population.

Background

As defined in the National Survey of Children With Special Health Care Needs (NS-CSHCN), CSHCN include those with “chronic physical, developmental, behavioral, or emotional conditions.” The prevalence of CSHCN is increasing, from just less than 13% in 2001 to more than 15% of the population aged 0 to 17 in 2009; children with behavioral or developmental issues represent almost one third of this group (NS-CSHCN, 2009–2010). Historically, long-term survival of many now grouped in the special needs population was a rare occurrence. As a consequence, even after reaching adulthood many of these patients were maintained within a pediatric setting (Scal & Ireland, 2005).

Major changes in the health care arena specifically and in society generally have allowed many children and adults with special health care needs to live longer and fuller lives, frequently outside the doors of an institution. These changes have included increased knowledge about nearly all the disabilities affecting the special needs population; a vastly expanded array of evidence-based medications, devices, and therapeutic strategies; a set of programs and resources unimaginable just a few decades ago; and a greater willingness throughout much of society to re-examine stereotypes and to enhance the productive potential of populations that previously would have been shunned (Doka & Lavin, 2003). Consequently, CSHCN entering adulthood increasingly find themselves accessing the health care system used by adults.

The ability of the health care system to effectively address the health of persons with special needs has undergone rigorous examination (Michaud, Suris, & Viner, 2004). These analyses have found that the transition of CSHCN is far from seamless, a consequence of two distinct health care systems—one child-oriented, the other adult-oriented. These systems are separated not just by distinct sets of providers who deliver care, but also by funding mechanisms, insurance eligibility, resources, and the expectations placed on patients and their families (Hait et al., 2006; Herzer et al., 2010; Kennedy & Sawyer, 2008; Lotstein et al., 2009; Lugasi et al., 2011; McManus, Newacheck, & Greaney, 1990; White & Blum, 2002). While the health care needs of essentially healthy children and adults may be sufficiently distinct to allow such a division to work relatively well, decades of research have shown that the same is not true for individuals with special health care needs or disabilities. For these individuals to maintain health and to realize their lifetime potential they require access to interventions and resources that are often not available when there is an abrupt and definitive ending of pediatric care and are cast into the unfamiliar world of adult medical care (Blum et al., 2002).

People with special health care needs face organizational barriers and those related to the ability of patient and provider to communicate effectively and in a timely fashion. In treating persons with disabilities, doctors and staff working in the adult setting often overlook and dismiss patient observations and input to the detriment of optimal outcomes. Adult settings often present physical and social barriers that inhibit the ability of people with special health care needs to gain access to necessary health care services (DeJong et al., 2002). Physicians often fail to acknowledge the importance of communication with caregivers and other members of the patient’s support system, a vital component, if successful care outcomes are to be achieved (Reiss et al., 2005). Recent studies by Kuo, Cohen, Agrawal, Berry, and Casey (2011) and by Venkat, Jauch, Russell, Crist, and Farell (2012) demonstrated the critical importance of family caregivers as navigators for their children and family members with special health care needs including those with autism spectrum disorders (ASD). Patients in these categories are challenged by the limited understanding exhibited by many providers in dealing with their needs. As a result of limited care coordination, the burden of unmet medical and service needs is carried by their caregivers, who, because of their children’s medical condition, are already burdened in other ways.

Concerns have been raised by pediatricians as to whether providers whose focus on the care of general adult patient populations possess the requisite specific and nuanced awareness of the needs of CSHCN during the often stressful transition to adulthood (Kennedy & Sawyer, 2008). Several researchers have noted that many providers, of pediatric and adult patients, are largely unwilling to care for those with chronic illnesses and disabilities who are now too old to receive pediatric care (Okumura et al., 2010; Rosen, 1995). Physicians who identified themselves as being unable to care for young adults with special health care needs generally cited disease-specific barriers rather than the organization of care or their ability to communicate with patients or their families (Reiss et al., 2005). In one survey of providers, 50% of all internists and 62% of pediatricians expressed the belief that adolescents with chronic diseases of childhood onset would have difficulty finding an adult-focused primary care provider, although the majority of internists and pediatricians reported that when providers were found, communications about transitioning were easy to facilitate (Okumura et al., 2010).

Even if communication issues are fully resolved, other matters would impede the successful transition of young adults with special needs into the realm of adult medical care. A persistent problem is that most general pediatricians are inadequately trained to address the ongoing care and transition needs of this population. A review of the literature of physician practice with and knowledge of patients with ASD by Venkat and colleagues (2012) demonstrates that when physicians are faced with patients with special needs who are unable to verbally communicate the pain or suffering they experience, many of these physicians were unable to adequately interpret behavioral changes. These researchers also found that most physicians lack information regarding metabolic disorders related to the condition of patients with special needs. They conclude that specialized preparations on the part of physicians, including accommodations in the office or practice environment to adequately assess, diagnose, and treat these patients, are often missing.

The Medical Home Revisited

Studies evaluating the effectiveness of the medical home indicate that all children who are linked with a specific provider within a medical home have fewer delays in care, fewer unmet needs, better concordance, and increased satisfaction—and this applies to CSHCN as well (Golnik, Scal, Wey, & Gaillard, 2012; Romaire, Bell, & Grossman, 2012a, 2012b; Starfield & Shi, 2004; Strickland et al., 2004). Yet, access to medical homes is frequently absent for this population. Such access turns out to be influenced as much by where patients live and family socioeconomic circumstances as by patient needs. A recent study by Aysola, Orav, and Ayanian (2011) examining the relationship between social determinants of health and whether children received care in medical homes provides evidence that “place matters”; children in unsafe, less cohesive neighborhoods were less likely to receive patient-centered care.

Studies evaluating the implementation of the medical home indicate that only half of CSHCN have access to a medical home; and among those with ASD, access is even lower—less than 30% (Kogan et al., 2008; Strickland et al., 2004; Strickland et al., 2009). Additional disparities exist by race and socioeconomic status: In one study of post–high school use of services by children with autism, African American and low-income youths were far more likely to receive no services on exiting the school system (Shattuck, Wagner, Narendorf, Sterzing, & Hensley, 2011). As patients transition out of childhood into adolescence, there is a reduced likelihood that persons with special health care needs will belong to a medical home, a fact that further exacerbates the difficulties inherent in the transition (NS-CSHCN, 2009–2010).

During the past decade, structuring the transition to care among young adults has continued to receive insufficient attention. The 2011 Joint Statement on Transition changed this (Cooley & Sagerman, 2011). This document significantly revised the long-standing 2002 AAP Consensus Statement on Health Care Transition for Young Adults with Special Health Care Needs (Blum et al., 2002) and provided a well-considered algorithm for transition. However, the emphasis of the 2011 Statement continues to be on the “hand off” from youth- to adult-medical home-based providers, thus maintaining the bifurcated structure of two distinct medical training and health care systems.

Scal and Ireland (2005), in an attempt to assess transition from pediatric to adult care, identified characteristics of children and their families that predict use of services. Relying on survey responses to questions about transition planning from 4,332 youths aged 14 to 17 years from the NS-CSHCN, the authors found that 50% of parents had discussed transition plans with a physician but only 16% had actually taken the next step and developed transition plans for their children. Older, female children with more complex special health care needs whose parents reported higher quality interactions with their providers were more likely to have such a plan. As the authors advocate, their findings support an increased emphasis on medical homes and family-centered care to improve the likelihood of transition plans for all CSHCN. In particular, they focused on those youths with less complex conditions—those who were least likely to have any discussions or implementation of these plans.

In a systematic review of literature on family-centered care for CSHCN published between 1986 and 2010, Kuhlthau and colleagues (2011) found limited evidence of the impact of this type of care on either costs of care or transition planning. Despite noting that family-centeredness is the “hallmark of the pediatric medical home,” they provide no indication that a life span perspective was included in the medical home design in any of the studies reviewed. Furthermore, in their review of studies of children with attention deficit hyperactivity disorder (ADHD), there was no evidence that family-centered care improved either behavioral symptoms or communication among parents, teachers, and providers, an outcome that could potentially be improved if care management included a life span perspective. Family-centered care seemed most effective in studies of children with chronic conditions. Ironically, the one study cited by Kuhlthau et al. as purportedly supporting the effectiveness of medical homes in transitions was that by Scal and Ireland (2005).

In a review of medical homes for CSHCN, Homer and colleagues (2008) examined 33 articles. They used the Institute of Medicine’s framework for assessing quality of care and outcomes, evaluating safety, effectiveness, efficiency, and timeliness. Their findings were similar to those of Kuhlthau and colleagues (2011), in part due to an overlap of the studies examined. Here again the authors site Scal and Ireland (2005) as the single study providing evidence that medical homes can offer long term, developmental transitions for CSHCN. Yet Scal and Ireland simply provide evidence that transition plans exist for less than 20% of these children and that “the importance of transition services for adolescents with less complex needs and the overall impact of health care transition services were not assessed in this study and remain important questions for future investigations” (p.1607).

The finding that transition plans are rarely used for health services is consistent with the inadequacy of other transition planning required for this population. Although estimates vary, a study by the Department of Health and Human Services (2007) reported that 14% of school-aged children have special health care needs (including developmental needs). School-based planning is accomplished through the Individual Education Plan (IEP). An IEP includes transition planning (e.g., post-secondary, vocational, or employment) and integration within the community. Although required by law, as many as 44% of states are not in compliance with the Federal requirements of the IEP process and 88% are not in compliance with the limited transition planning requirements already built into the IEP (Wrightslaw, 2011). The requirements of the IEP planning documents are limited in scope in relation to the information recorded and required of other health care and service providers. These requirements are also limited with respect to integrating community-based partners and programs that might work in concert with school-based services. Therefore, the approach advocated in this article may have a secondary effect of strengthening the potential beneficial impact of IEPs.

Similarly, other recent models to improve health care quality do not adequately address the needs of youth with disabilities and chronic conditions, as the mechanisms proposed to bridge care are taken from the perspective of adult-oriented care (Iezzoni, 2011; Lynn, Straube, Bell, Jencks, & Kambic, 2007). Additional innovations such as disability-care coordination organizations, while respecting the needs of the adult population, do not address transitions from child- to adult-oriented care (Palsbo & Diao, 2010; Palsbo, Mastal, & O’donnell, 2006). Finally, none of these models consider the import of other nonmedical determinants of health including unmet community-based service needs that are “critical for optimal medical, developmental, and service outcomes” for a child with special health care needs (Kuo et al., 2011).

At present, care coordination is limited, resulting in unmet medical and service needs. However, this does not mean that conceptually the medical home is without merit. The research clearly supports its effectiveness when these children have access, when families are involved, and when physicians understand the medical care needs of their patients. However, a more active approach will be required to impact the majority of CSHCN who are still not receiving adequate transition planning, especially youths with less complex medical conditions. Care must be coordinated and managed from early childhood. Nonmedical elements must be skillfully integrated with medical ones. What follows is a reconceptualization of the medical home model, introducing a life span perspective to resolve the postpediatrician transition.

A Solution Already Exists and Is Waiting to Be Recognized

As far as we have been able to determine, the literature details no distinct pathways that bridge pediatric-to-adult care with a life span perspective. The existing medical home focuses on clinical practice for children, although with the passage of health reform legislation innovations like accountable care models are adapting this approach for adults. The move toward addressing social determinants of health by Aysola and colleagues (2011) is also receiving increased attention made possible by funding streams that support community-based services. What is missing from the current models are the conceptualization and practical application of a life span perspective that extends the traditional definition of patient-centered care with an emphasis on maintaining patients from childhood to adulthood. What follows are the arguments for a medical home model that includes this life span perspective, which is in direct contrast to current models that plan for “hand offs” from pediatricians to adult providers. Our reconceptualized model provides a pathway to fully integrate this special patient population into our evolving health care system.

We believe that this strategy could provide the supportive environment that is required to address the unmet needs of this population and to foster participatory decision making between patients and physicians (Golnik et al., 2012; Venkat et al., 2012; Warfield & Gulley, 2006; Weedon, Carbone, Bilder, O’Brien, & Dorius, 2012). In addition, it provides a planning framework that begins early in a patient’s life (and care plan), thus ensuring that their health care needs are met (Nishikawa, Daaleman, & Nageswaran, 2011; Roerbroeck, Jahnsen, Carona, Kent, & Chamberlein, 2009). Compared with pediatric-oriented practitioners, life-span-oriented practitioners are more likely to discuss with their patients and their families changing health needs and other critical care issues, like continuity of health insurance coverage. Communication with the family is crucial, as the majority of children with intellectual and developmental disabilities continue to live with their families into adulthood. For these patients many positive outcomes associated with living with family are accompanied by some negatives, and a recent study found those who live at home are less likely to receive preventive health exams than those who live in other types of residential settings (Bershadsky et al., 2012). Life-span-oriented practitioners can also anticipate changes in services other than direct medical care, including education, transportation, housing, and work transitions. All of these comprise the more complex social and environmental determinants of health outcomes (Nishikawa et al., 2011; Roerbroeck et al., 2009).

An approach that calls for the creation of medical practices that congregate patients with similar needs is not a new concept. Many subspecialty clinics focus on chronic illnesses, such as diabetes. Team-based, multidisciplinary “person- and family-centered” care is an innovation that is being advocated by organizations such as AARP in care for the elderly (Feinberg, 2012). These practice arrangements enable teams to learn from their encounters with certain categories of patients and their families, to consolidate resources, to implement technological innovations (such as telehealth models used by the Veterans Administration), and to refine practices creating efficiencies for the benefit of patients (Bendixen, Levy, Olive, Kobb, & Mann, 2009). They have also been shown to be cost-effective and to improve care outcomes; and are among the reasons that they have become integral to the performance of major health systems, such as Geisinger’s (Aanesen, Lotherington, & Olsen, 2011; Bendixen et al., 2009; Maeng et al., 2012; Palsbo & Diao, 2010).

Not surprisingly, maintaining patients from childhood through adulthood may improve the coordination and care of the individual and capitalize on the results demonstrated in the models and innovations described here. It seems likely that over the lifetime of care provided for CSHCN and developmental disabilities, cost and resource savings could even be greater (Kogan et al., 2008). Efficiencies learned in the management of a child’s illness would not be lost when the child reaches adulthood. Instead, care teams that have mastered the coordination of care for an individual will remain in place, allowing for sustained access to resources and therapies necessary to maintain the relatively high level of functioning achieved in childhood.

Building practices capable of such longitudinal care would address a number of issues that currently prevent seamless transitions of care. These include an understanding of what constitutes typical behavior for various categories of patients and difficulties associated with incomplete health histories and practice environments and settings that are not adapted to the sensory and physical needs of patients (Venkat et al., 2012).

Although we are advocating a longitudinal model of care, continuous from childhood through adulthood and delivered in settings that are fluent in the appropriate modalities of care, we are not suggesting that an individual physician provider remain constant over a patient’s life span. This certainly represents one ideal that might be achieved through an increased presence of Family Medicine specialists and an emphasis on grouping patients with similar needs, with ensuing benefits resulting from providers having repeated exposure to commonly encountered issues. But like most ideals it may be impractical much of the time. It is likely, however, that a single patient may remain within our reconceptualized medical home for an extended period of time.

If presented with the choice between developmentally appropriate care or maintaining care in a setting with patients of similar needs, it is always preferable to make the move toward developmentally appropriate care, if the patient so wishes. Achieving such respect may be particularly important to young adults and their caregivers who want to share in the decision-making process with their physicians. The medical practice responsible for each patient should acknowledge when a patient’s needs change requiring care in an alternate setting. This transition could then be managed consistent with the Consensus Statement. At the same time, it would be a way of respecting the views of patients, who have stated a preference for being treated based on developmental status rather than disease (Kennedy & Sawyer, 2008).

There is no reason why a practice could not serve healthy patients and patients with special health care needs, an approach similar to the family-centered care model advocated by AARP (Feinberg, 2012). In fact, given the number of patients with special health care needs within a given geographic area, it is unlikely that they would fill a physician’s panel, something particularly relevant in less densely populated rural areas. Although it is preferable that practices have enough patients with similar needs to learn from treatment patterns and repeated experiences, it is likely that many practices would also see a diverse panel of patients. Such an approach would be consistent with an emphasis on family-centered care, allowing siblings and family members to receive their care in the same place as a family member with special health care needs. This would further reduce the health care fragmentation experienced within a single family. Provider teams would be familiar with the medical history and needs of patients; patient and provider communications would be improved; and confidence among family members would be fostered by a structured transition process (Feinberg, 2012).

It is appropriate to focus additional attention on the needs of certain subpopulations. In a study by Lotstein, Kuo, Strickland, and Tait (2010) that examined racial and ethnic disparities in youths with special health care needs, the authors conclude that adequate health care transition planning was even worse for African Americans and Hispanic youths than for their peers. The authors acknowledge that their study does not evaluate or discuss additional components of planning, including education and jobs. However, they discuss the importance of insurance as the key to determining whether any type of transition planning takes place. It is conceivable that the Patient Protection and Affordable Care Act (PPACA) may reduce racial and ethnic disparities in health care transition planning and improve planning for all CSHCN. A review of the PPACA by Williams and Redhead (2010) indicates that several components of the legislation will improve access to insurance coverage for families and children through the expansion of Medicaid and the development of insurance exchanges. The legislation is likely to help this subpopulation in other ways. It allows families to cover their children through age 26. It forbids insurers to deny insurance coverage to children and adults with preexisting conditions. It provides funding for coordination of services in medical homes and community health teams, and it has the ability to “empower patients by facilitating shared decision making among patients, caregivers and providers, or modifying requirements for patient navigator services.”

The PPACA not only provides financial support for workforce training and incentives, encouraging multidisciplinary teams to provide care through medical homes, but, in addition, it assures patient-centered care for home- and community-based services and teams. With the advent of health care reform, there is nothing to preclude a transition from pediatric to adult care for CSHCN within family-centered medical homes. What needs to be considered and what is not specifically defined is an approach that includes life span planning and integration of other important transitions that impact health functioning, including living accommodations, education, and employment opportunities.

Life span planning and integration of services is particularly important for children with relatively less complex needs (Scal & Ireland, 2005) and is a consideration that has been missing from other studies of family-centered care or medical homes (Homer et al., 2008; Kuhlthau et al., 2011). Patient navigators working within community health teams should be permitted to facilitate these transitions. In addition, physicians that adopt a life span perspective will be encouraged to take responsibility for and coordinate the medical management component of transition with the patient navigators. Communication is fostered by these providers coresiding within a practice dedicated to the mission of providing continuous care. This would minimize disruptions in care or services that are appropriate and supportive of associated transitions (e.g., educational, transportational, residential) from childhood to adulthood. The PPACA provides a reconsideration of the medical home that, in addition to the postpediatrician transition, is capable of taking on the larger transition framework that is capable of care and services coordination within communities where these young adults will likely remain throughout their lifetimes.

Community-oriented care management can also go a long way toward reducing health disparities that exist within this population, in addition to supporting the medical home. Staffing a care management team that is community-oriented and helps patients and families navigate through other critical life transitions, such as transition from school-based instruction to vocational training or independent housing, would constitute an expanded view of current conceptual designs of the patient-centered medical home: These incorporate practice-based team care, care plans, and patient-centered care (Berenson, Devers, & Burton, 2011; Viola & Arno, 2012).

Feasibility

Some may challenge the feasibility of transitioning postpediatrician care in the ways we have described involving a reconceptualization of the medical home model—a step we felt necessary given the track record with this population in pediatric medical homes as currently constituted (Kogan et al., 2008; Strickland et al., 2004; Strickland et al., 2009). Such challenges may invoke qualms about the inadequacy of training child- and adult-oriented providers (Okumura et al., 2010; Reiss et al., 2005; Rosen, 1995; Venkat et al., 2012) and the uncertainty inherent in working with communities to provide nonmedical services (Berenson et al., 2011; Nishikawa et al., 2011; Roerbroeck et al., 2009). Alternately, such a challenge may in part be based on recent studies indicating that despite some notable and promising successes in targeting services, reducing costs, and improving outcomes, successful medical homes require appropriate staffing levels, training and financial incentives that are difficult to achieve (Harbrecht & Latts, 2012; Patel, Rathjen, & Rubin, 2012; Raskas et al., 2012).

These objections may have had greater traction in the past than they will in the future. Recent changes in health care reform legislation and a renewed emphasis on patient-centered care suggest the promise and feasibility of our approach (Lind & Archibald, 2012). We realize that a reformulation of current thinking is also required if we are to resolve the postpediatrician transition issues for children and young adults with special health care needs. In any case, reconceptualization cannot be avoided, as the current state of affairs does not foster an appropriate level and quality of medical and social services to children and families with special health care needs. We offer the following framework that should be considered by policy makers and providers toward achieving the medical home model we have described. This framework is adapted from The Five Pillars of System Transformation introduced by the SCAN Foundation to develop long-term services and support systems for adults with chronic condition and functional limitations (The SCAN Foundation, 2012). The five pillars they suggest to transform systems include: administrative reorganization, global budgeting, universal assessment, integrated information systems, and quality measurement and monitoring. This framework is an ideal start for our initiative, but given the age of our population, requires some additional considerations, including a sixth pillar that goes beyond system transformation.

Administrative reorganization requires coordination between federal and state level regulations. CSHCN may be covered by federal legislation such as the Americans with Disabilities Act or Individuals with Disabilities Education Act, yet school-based planning for transitions, as we noted, varies by states. Changing requirements of the IEP to include health and community-based social support transitions is critical to life span planning. To truly support family-centered care, we will need to include systems that integrate care plans for caregivers and care recipients and that consider the impact of aging on caregivers. The Older Americans Act provides legislative support “to older individuals providing care and support to persons with mental retardation and related developmental disabilities,” but currently little attention has been given to the additional burdens placed on aging caregivers who must plan for themselves and their dependents (Administration on Aging, U.S. Department of Health and Human Services, 2011).

Global, or flexible accounting practices, could be achieved as a result of additional funding streams provided by the PPACA. However, there are limited resources to extend the funding life of the IEP, which is integral for transitions to work or additional educational or vocational training beyond age 21. Advocacy that serves to remove barriers to combining federal resources, including Social Security, Medicaid, and IEP dollars and allow these to be combined with state and local funds, would provide increased possibilities for access to health-related services, workforce and postsecondary education or training. The PPACA has eliminated some financing barriers that protect children with private health insurance through age 26.

Universal assessment may be facilitated by aligning goals of the medical home with Healthy People 2020 objectives. For example, topic area Disability and Health lists specific targets and baseline indicators for improving transition planning, increasing the proportion of children and youth with disabilities in regular education programs, reducing barriers to primary care and use of appropriate medications and community-based measures that include participation in recreational, employment, social and emotional support services.

Integrated information systems, including automating IEPs and the use of electronic health records, may be the best way to reduce caregiver and care recipient concerns and empower these children and youth to make decisions about their own care when possible. Integrating primary care with nonmedical determinants of care, within one practice over the life span, increases the likelihood of utilizing proven self-care interventions and improving outcomes for this population. Reducing the reliance on caregiver navigators by coordinating services with trained patient navigators can also increase community capacity so that all individuals requiring care and services are matched appropriately to the care they need.

Quality in the context of our life span model is not dissimilar to quality expectations for any model of care; it should “reflect what is important to the individual receiving services and quality improvement efforts should center on those aspects of the system that reinforce person-centeredness” (The SCAN Foundation, 2012, p.9). Participation by families, providers, and community stakeholders through participation in initiatives like the Measurement Applications Partnership will assure that these measures reflect expectations of children, youths, and adults with special health care needs (National Quality Forum, 2012).

Together these five pillars provide a pragmatic framework toward achieving our reconceptualized model, but a final “pillar” is needed. Critical to the life span approach is an understanding on the part of physicians and professionals of the social context of this population’s and their families’ lives and challenges. Arthur Kleinman described the need for health care providers to “understand the illness experience and therewith provide care as well as cure” 40 years ago, soon after the AAP introduced the original medical home model of care for children; Kleinman still laments that this may be the “the greatest challenge” facing the practice of medicine today (Kleinman, 2013, p.1377). Although the structural transformations we described may facilitate the provision of care and transitions, success will be predicated “on the importance professionals give to the deep experience of their patients” (Kleinman, 2013, p.1377) and how these experiences are shared, communicated, and translated into practice behaviors may require more than traditional curricula that focuses on cultural competency or humanities courses. Field-based experiences, internships, rotations, and residencies that take physicians and professionals into homes, schools, and communities where these children, youths, adults, and their families experience their challenges may be the best approach to expanding knowledge, understanding, and awareness of how these lives are lived.

Conclusion

Aysola and colleagues acknowledge that the “interplay between social determinants, health services such as the patient-centered medical home, and health outcomes has not been well described” (Aysola et al., 2011, p.2089). They conclude that community engagement and integration is essential if we are to design effective and efficient medical practices within the medical home model. We would add that we need to move away from a bifurcated system of care and delivery. We have assembled evidence suggesting that a consideration of a life span perspective can achieve this expanded integration and advance the equality of children and young adults who must deal with their illnesses and disabilities over their life time. A more holistic, longitudinal approach will foster their independence and the potential for richer and more productive participation in their own communities as adults. Our approach will require flexibility and nuance, as it is adapted to changing circumstances and to various geographic and social settings. That is fine. What is not acceptable is to continue what we have been doing, when outcomes have been inadequate and better approaches have been developed. These approaches are waiting for us to act on. Our patients, our children, and our families deserve our dedication and our willingness to move forward.