Journal of Pediatric Rehabilitation Medicine: An Interdisciplinary Approach 7 (2014) 93–104 DOI 10.3233/PRM-140274 IOS Press

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Implementation and sustainability of statewide transition support services for youth with intellectual and physical disabilities Mary R. Ciccarellia,∗ , Matthew W. Brownb , Erin B. Gladstoneb, Jason F. Woodwardc and Nancy L. Swigonskid a

Departments of Medicine and Pediatrics, Indiana University School of Medicine, Indianapolis, IN, USA Indiana University Center for Youth and Adults with Conditions of Childhood, Indianapolis, IN, USA c Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA d Departments of Public Health and Pediatrics, Indiana University School of Medicine, Indianapolis, IN, USA b

Accepted 12 January 2014

Abstract. PURPOSE: Significant gaps in care and limited existing models establish the need to innovate systems of care for youth with special health care needs in the transition between pediatric to adult health care settings. METHODS: Using implementation science, a statewide transition support program was created. University and community partners explored needs and adopted a strategic plan and funding sources. The existing consensus statement provided a framework. A team was hired, policies were piloted and the initial ambulatory consultative transition service for youth with special needs ages 11 to 22 was launched. Full program activities during year four were analyzed. RESULTS: During 2011, there were 139 consultations for youth with intellectual disability and/or physical disability (average 16.74 years, 46% female). Services include routine and focused co-morbidity screening and recommendations, care coordination of complex health and community service needs, and support for families. The evolving transdisciplinary team adapted their methods to collaborate with a growing population of youth and primary care providers. CONCLUSION: A statewide transition support program is a viable delivery model to provide needed resources for youth, families and primary care practices. Weekly improvement meetings continue to adapt services to sustain family satisfaction and community provider satisfaction. Keywords: Adolescent health services, implementation science, intellectual disability, physical disability, transition to adult care, consultation and referral, program development, youth with special health care needs

1. Introduction Over the last two decades, literature has called attention to the growing population of youth with special health care needs (YSHCN) and their approach∗ Corresponding author: Mary R. Ciccarelli, Center for Youth and Adults with Conditions of Childhood. Riley Hospital for Children, Room 5850, 705 Riley Hospital Drive, Indianapolis, IN 46202, USA. Tel.: +1 317 948 1999; Fax: +1 317 948 7577; E-mail: [email protected].

ing transition to adulthood [1]. Adolescents and early adults report many barriers in their transition process from pediatric to adult health care, affecting their healthcare access and satisfaction [2], as well as barriers in their achievements of educational, employment and living goals [3]. Youth with more complex health conditions account for higher healthcare costs and have multifaceted coordination needs which may exceed the time constraints and skill sets of primary care medical homes [4,5]. In an American Academy of Pediatrics (AAP) Fellows Survey, most pediatricians did not yet

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offer recommended transition services and the majority still believed that transition planning should begin at ages 17–18 despite AAP recommendations for earlier initiation [6]. The lack of time to address transition in pediatric primary care settings and the lack of skills in caring for adolescents in adult primary care settings are notable specific barriers [7,8]. Governmental and organizational recommendations to improve both process and outcomes have been published [9], yet functional delivery models for transition services are not established. Implementation science (IS) is the study of processes which take evidence acquired through research and apply this knowledge into everyday practice. It addresses obstacles that hamper program delivery, ensures fidelity to effective interventions and integrates process improvement and feedback into sustainable practices. This approach, endorsed by the National Institutes of Health and the Centers for Disease Control, is thought to be particularly useful in the development of innovative programs in healthcare, such as programs focused on transition of YSHCN into adult care. This methodology focuses on biological as well as social and environmental effects of the implementations [10], just as systems of care for youth with disabilities are encouraged to address the individual’s body functions as they interrelate with personal and environmental factors in determining the person’s ability to participate in the community [11]. In this article we describe the development of ambulatory consultative transition support services using an implementation science approach. The stages of the implementation process are described as exploration, program installation, initial implementation, full operation, innovation and sustainability [12].

2. Methods Implementation Science Stage 1: Exploration is the process of Identifying the need for an intervention, assessing the proposed innovation and examining its potential fit within the system. Readiness factors that are key include the system’s motivation for change, resources and organizational climate. Data from the National Survey of Children with Special Health Care Needs 2005/06 (NS-CSHCN) indicated that the majority of parents of YSHCN in Indiana reported they did not receive the services necessary to make appropriate transitions to adult health care, work and independence [13]. In 2005, stakehold-

ers from an established academic-community collaboration between parent advocates and academic pediatricians within a community pediatric residency training initiative identified a shared interest in the issue of transition [14,15]. With the knowledge that nearly sixty percent of the state’s YSHCN ages 12–17 had unmet transition needs [13], the group engaged discussions across four of the state’s centers for independent living and confirmed that local barriers and needs paralleled those described nationally. These discussions created the impetus to improve transition service delivery at a statewide level. Key participants initiated planning for a local solution and sources of funding were sought. Discussions between pediatric residents, parents and faculty at the children’s hospital and with young adults and parents at four of the seven centers for independent living across the state were conducted. A two day retreat was then organized to incorporate youth, family and provider recommendations into the development of mission, values and goals for transition service delivery. Engaging a broad array of stakeholders in the multidisciplinary implementation process is one classic recommendation from IS: in designing the question, collecting data and on-going feedback, and restructuring the process to maintain relevance with goals and principles [16]. A wide range of stakeholders representing government agencies, family and community organizations, and multidisciplinary health care providers were engaged (Table 1). A mission was adopted “to steer YSHCN towards successful adult life” with the following values: utilizing a youthand family-centered approach [17] focused within the medical home [18], and achieving and maintaining the highest desired quality of life, including attention to self-advocacy and community participation [19]. It was also agreed that a “whole-life” rather than a pure medical approach to services was needed. In order to promote early planning and encourage a sense of ability and future goals, the program would serve youth ages 11 to 22 during periods of stability to allow for proactive and intentional planning. Services were designed to address physical and mental health as well as social needs, optimizing both capacity and participation as encouraged by the International Classification of Function model of disability (Fig. 1) [20]. Inherent in this model is the understanding that patients’ diagnoses viewed alone without concurrent attention to school or work performance and social integration do not provide the information needed for health planning and service delivery.

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Table 1 Planning retreat stakeholders Consumers, parents and professionals Children’s hospital chief of pediatrics Faculty from general pediatrics, developmental pediatrics and medicine-pediatrics Pediatric Health Service Researchers Children’s hospital care coordinator Leadership Education in Neurodevelopmental Disabilities staff University Center for Excellence in Developmental Disabilities staff University Department of Social Work faculty State Maternal Child Health medical director and staff State Developmental Disabilities council member State Department of Education staff State Parent to Parent network director and staff State ARC director Regional Center for Independent Living director Medicaid managed care office of quality administrator

Fig. 1. International classification of functioning, disability and health. (Colours are visible in the online version of the article; http://dx.doi.org/ 10.3233/PRM-140274)

Implementation Science Stage 2: Instillation prepares the new program prior to actually beginning the delivery of patient services. Attention must be given to budgets, human resources, facilities and policies. The model for service delivery utilized adaptations from a variety of other sources. The Institute of Medicine addresses the need to facilitate the participation of persons with disability within their communities for employment, living and recreation and to engage in health promotion to prevent comorbidities [11]. A tertiary care – primary care partnership program for children with complex needs improved care through generation of plans of care, facilitated provider communication, and community agency collaboration [21]. Geriatric programs have demonstrated benefits of comprehensive assessments and case management for frail elders [22]. Integration of both

medical and psychosocial management within programs has value in promoting the community participation of patients [23]. Therefore, the collective of stakeholders proposed that an ambulatory consultative and care coordination service would help improve transition services for YSHCN across the range of diagnoses in cooperation with their medical homes, subspecialty services, education and employment support agencies and other related community resources. A transdisciplinary team model was selected to allow cross-training and overlapping of role responsibilities and to provide cohesive and integrated management plans. This model promotes development of management plans through collaboration between multiple professions, including patient advocates, nursing, medicine, and social work [24]. The model evolved to include an ambulatory consultation with subsequent care coordination.

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Fig. 2. Consensus statement recommendations on health care transitions for young adults.

In 2007, the group secured funding from the state Title V program to launch transition services through the academic medical center’s central campus which houses three hospitals: children’s, university and county. An advisory group of stakeholders supported program development through their roles and experience. This group included persons with knowledge about community resources, persons with authority on the medical center campus, and persons with the responsibility to enact the plan (the team themselves). A transition team of medicine-pediatric physicians, a pediatric rehabilitation physician, nurses, a social worker, a community disability advocate, parent advocates, and an administrative assistant was hired by specifically seeking individuals who were also experienced as health care consumers or family members of consumers with chronic conditions or disabilities. Two team members were shared employees, one with the local center for independent living and another with one of the state parent-to-parent networks. These collaborations were designed to expedite the team’s acquisition of skills in navigating community systems of service. Also important was the commitment to quality improvement and professional education as a means to promote system change and incremental improvements. At the initiation of service delivery, the team planned an approach to data collection, with entry of patient key indicators into a clinical database. Institutional review approval (IRB #0706-67B/1009001810) for the project database included establishment of both assent and consent processes for vulnerable youth and new young adults and their caregivers [25]. A survey instrument was designed to assess self-reported health and community activity status of youth [26] at enrollment and annually. Family satisfaction surveys were col-

lected. Methods to address education of primary care providers were proposed, initially as shared communication of the medical summary, care plan and transition goals. As a new and innovative program, the team invested heavily in quality improvement methodology, using dashboards of process and outcome data at weekly meetings to lead to stepwise and progressive rapid cycle changes and program modifications. Implementation Science Stage 3: Initial Implementation moves all the planning into service delivery. It tests the service delivery plan against the originally referenced evidence, principles and policies, using process observations and cycles of improvements. The 2002 AAP-AAFP-ACP consensus’ six recommendations [9] in Fig. 2 formed the template as numbered below for the design of the service model. (Fig. 3) A health care professional attended to the issue of a patient’s transition needs either through providing transition services themselves or by referring a youth ages 11–22 for consultation to the transition support program. Referrals were accepted from any source: primary care, specialty care, community agency or the family themselves. Referrals were sent when a youth or family expressed or demonstrated a transition need. In order to be ready to deliver the transition service model, the team of professionals enumerated the core transition knowledge and skills and became trained through collaboration with those selected community agency partners who had advanced expertise in caring for youth and adults with disabilities. As the team acquired knowledge they then also shared their skills with other providers, including primary care residents from pediatrics, medicine-pediatrics and internal medicine who were scheduled to participate with

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Fig. 3. Transition service delivery model. (Colours are visible in the online version of the article; http://dx.doi.org/10.3233/PRM-140274)

the team during ambulatory residency rotations. Community medical home practices participated in a learning collaborative which included practice educational visits and resource packets for self-education. A portable medical summary was created for each individual patient subsequent to the comprehensive intake assessment and team meeting. The summary format is available at http://www.eskenazihealth.edu/ourservices/center-for-youth-and-adults-with-conditionsof-childhood/after-your-visit. The assessment included the reconciliation of the medical history and current treatment plan, a psychosocial, functional and selfmanagement assessment, and a current medical history and physical exam. The initial visit typically totaled two to two-and-one-half hours divided into discussions with nursing, social work, medical learner and physician. One team member was involved with the patient and family in their component of the assessment while others completed additional tasks related to the transition services. Nursing contacted pharmacies,

providers and home health agencies for information clarification. Social work contacted schools, community resources, or other case managers. Learners stayed with the patient and family to observe the full assessment. After the visit, the printed or electronic summary was shared with youth, families, the medical home and other providers as the family requested. The completed summary for a typical complex patient generally was 3–4 pages in length. A written transition plan identified goals and needed services in four domains – health, education/employment, independent living, and community participation. It included the current state, future goals and action plans, and recommendations regarding eligible community and governmental resources. The plan was updated annually at follow up visits. Care coordination activities then assisted families in the implementation of their plan through counseling, support in navigating systems and provision of additional resources. Once a year, the young adult patient re-

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ceived a follow-up phone call which queried their selfassessment of readiness to graduate from the transition program. Graduation criteria included engagement in satisfactory adult medical homes with adult health care financing plans, comfort with their ability to identify their own health needs and navigate the system, identification of the person who would serve as the adult legal decision-maker, and a working interdependence within their own support system of family, caregivers, and friends. Youth were assessed using routine preventive care guidelines to address if recommended care was already received. Age-appropriate prevention needs are noted as suggestions to the current or new medical home. At times, gaps in primary care access required the transition program to be the provider of the needed medical service. Condition-specific health promotion guidelines were also reviewed to address other preventive care needs, i.e. annual thyroid screening for patients with Down syndrome. A plan regarding patient’s eligibility and application for the most appropriate affordable and continuous health care coverage was incorporated into the transition plan, including eligibility for home and community-based service programs. Implementation Science Stage 4: Full implementation takes the new innovation and further integrates it across the organization. It expands the program to full staffing, full patient loads, and stabilizes standard practices. It is a process which usually takes 2–4 years to achieve. The full team grew to include 0.5 FTE physician time, four full-time care coordinators (two each in nursing and social work), as well as a program manager, part-time research coordinator, and an administrative assistant. At full implementation, the team scheduled two to four visits to each of four weekly sessions, with an average of eight total new and return visits per week. Each care coordinator, working full time, required a balance of about 3.5 days of care coordination time for 1.5 days of office visits and actively worked on serving an average of thirty-five families who had recent visits. Physicians estimated that each patient requires about 2 hours of non-face-toface preparation and follow-up for each two hour visit. The care coordinator and administrator salaries were funded through an external grant. Physician encounters were billed as new or return comprehensive care visits or comprehensive consults. Return appointments occurred between one to two years after first visits and

continued to require two hours per visit, due to the complexity of the needs and changes experienced by the patients and their families. The patient volume accrued by about 150 new patients per year to the current total patient base of over 900 patients. As they gained more experience and skill in transition service delivery, the team edited and refined its medical summary and transition plan forms, as well as graduation criteria. Various methods of comanagement and communication with primary care providers were trialed and tailored to the preferences of the different practices, including physician-to-physician office visits, faxed co-management agreements, phone calls, secure emails, and nurse-to-nurse calls. Other educational tools for primary care providers such as one-page chronic condition handouts or device information sheets were developed. Participating primary care residents developed these tools by reviewing the literature, vetting them with subspecialists and creating a quick-reading overview of the topic, including topics such as antegrade continence enemas or caring for adults with Down syndrome. The point-ofcare educational handouts were distributed along with the patient’s portable summary and transition plan to new adult primary care providers, as well as pediatric providers. Primary care provider surveys about the utility of the transition services were initiated. Services and key activities provided for youth and families were regularly reviewed and summarized for the funding agency reports. Once the team had enough experience with transition services, they reviewed their work and developed a consensus list of key transition activities (as listed in Table 5) and then prospectively recorded their delivery of these activities for a full year of new patients. The categories of the seventeen most common transition activities did not mirror the types of unmet needs solicited in the intake survey. Services offered were based on youth or family request, as well as the comprehensive assessment, rather than solely on the family’s intake survey report of an unmet need.

3. Results When analyzing the results of implementation science research, operational factors are assessed repeatedly using dashboard views of key performance indicators. It requires an emphasis on process, even over outcomes. Work is often in areas of innovation where good measures are not yet sufficiently validated. Surveys, observations, objective measures and self-reports may be pertinent tools to utilize.

M.R. Ciccarelli et al. / Implementation and sustainability of statewide transition support services Table 2 Demographic Table (2011 patient group with intellectual and/or physical disabilities)

Total = 129 Age Female∗ Disability type∗∗ Physical disability Intellectual disability Both Metropolitan size∗∗ Small Medium Large Ethnicity∗∗ Black Hispanic White Other Health care financing∗ Private only Public only Both private and public ∗ Chi

Consented group n = 71 16.83 [11–22] 42.2%

Non-consented group n = 58 16.43 [11–23] 50.0%

9.9% 38.0% 52.1%

6.9% 62.1% 31.0%

29.6% 5.6% 64.8%

31.0% 5.2% 63.8%

14.0% 5.6% 76.1% 4.2%

17.2% 3.4% 79.3% 0.0%

16.9% 62.0% 21.1%

5.2% 67.2% 27.6%

square test, ∗∗ Fisher’s exact test.

Annually there are approximately 250 new referrals from providers, agencies and families. In the 2011 year, 146 patients from 30 counties across Indiana were seen for new patient appointments and intake into the transition support program. The frequency of key conditions for this patient group is highest for intellectual disability, followed by physical disability, with a third smaller group (n = 17) solely with a chronic illness, such as cystic fibrosis or diabetes mellitus. For the purpose of this discussion, we will focus on that population of patients with either intellectual or physical disability. There were 129 new patients (average age 16.74, range 11–23, 46% female) of which 46 percent had both intellectual and physical disabilities, 46 percent had intellectual disabilities alone and 8 percent had physical disabilities alone. All new patients were invited to participate in the study, which was approved by our institutional review board. Seventy-one of eligible patients completed consent and, when appropriate, assent requirements and provided responses to the intake survey. A comparison of the demographics of patients in the study and those who did not participate showed no significant difference in age, gender, chronic condition type, geography, ethnicity and insurance statuses, as analyzed by Chi square test and Fisher’s exact test (Table 2). The diagnostic mix of the primary chronic conditions of the study patients are noted in Table 3. Consented patients were referred to the transition services

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Table 3 Primary chronic conditions Cerebral palsy Down syndrome Intellectual disability NOS Autism Spina bifida Angelman syndrome Neurodegenerative disease Traumatic brain injury CHARGE association Corpus collosum agenesis Osteogenesis imperfecta Prader willi syndrome Tetrasomy 18P

31 9 9 6 5 2 2 2 1 1 1 1 1

#Consented patients, n = 71.

more often by subspecialists (58%) than primary care providers (23%) and less frequently by families themselves (18%) or community agencies (1.4%). Within the intake survey completed by the study families, questions were answered regarding the youth’s need for various clinical services in the past year, as well as their receipt or lack of those services during the same time period. The summaries of their responses regarding met and unmet services needs are summarized in Table 4. Families reported that 93 percent of youth needed routine preventive care visits, 89 percent reported the need for prescription medications, and 87 percent reported the need for dental care. It is notable that in comparison, a lesser group (70%) reported a need for additional specialty care. The services which demonstrated the greatest unmet needs were physical, occupational and speech therapies (21%), advance care planning (21%) and physical activity counseling (15%). The transition services delivered by the team are listed in Table 5 using the team’s consensus list of transition services as catalogued at post-visit team meetings. These youth and families received an average of five transition services per individual, with the range spanning from 1 to 11 activities per individual. The percentage of families receiving each of the transition services is provided in Table 5. More than fifty percent of parents or caregivers received education and counseling on issues related to parental activities in transition. Over one third (36%) of the youth and families received services in condition-related and routine preventive care, behavioral/mental health, current health care financing, work-related information and self-management/community participation planning. Of particular note is the discovery of a new diagnosis and delivery of subsequent treatment in 36 percent of patients. Simplification and clarification

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M.R. Ciccarelli et al. / Implementation and sustainability of statewide transition support services Table 4 Family-reported percent who needed services and who had unmet service needs in year prior to entry (percentage, n = 71 consented patients) Services Physical, occupational or speech therapy Advance care planning Physical activity counseling Mental health Dental care Durable medical equipment Home health care Nutrition counseling Routine preventive care visits Subspecialty care Prescription medications Medical supplies Sexual health care Counseling on smoking, alcohol, drugs

Total who reported need for service 71.8% 25.4% 29.6% 31.0% 87.3% 53.5% 30.6% 29.6% 93.0% 70.4% 88.7% 50.7% 11.3% 2.8%

of treatment plans included issues such as addressing polypharmacy, modifying daily schedules to better meet life needs and working with other providers to achieve agreement on proposed changes. New health care financing support and securing new providers occurred a little less frequently, in about one quarter of patients, but were still found to be very timeconsuming activities for the care coordinators. Issues related to employment needs occurred over twice as frequently as school issues. Often the unmet needs of families did not match the frequency of delivery of a transition service. Eleven percent of families reported a mental health need, while 39% agreed on receipt of new mental health services after completion of their comprehensive assessment which included mental health screening. Less than 20 percent described an unmet need in areas related to routine teen preventive health of physical activity, nutrition, sexuality or substance use, while 41% agreed to action items and/or referrals related to these routine teen preventive care needs. Coordination of care with other providers was noted as a transition service once per patient even when it included activities around therapies, medical equipment, and home health care. Perceived therapy needs were not always met by the transition program, particularly when not allowed through either health care financing prior authorization or school individualized education plans. In 2011, family satisfaction surveys were mailed to 227 families. There was a 34.8 percent response rate (n = 79). Ninety-two percent of responders noted that their questions and concerns about planning for the future were addressed. Families demonstrated a high level of satisfaction in their receipt of transition services. Some suggestions were incorporated into

Those who felt the need was unmet 21.1% 21.1% 15.5% 11.3% 9.9% 8.5% 8.5% 8.5% 7.0% 7.0% 5.6% 4.2% 4.2% 1.4%

Table 5 2011 Summary of audited transition services delivered (percentage, n = 71 consented patients) Services provided Parenting/caregiver education Condition-related preventive care Routine preventive care Behavioral/mental health Current health care financing issues Treat new diagnosis New work- related information Self-management/community participation issue Simplify/clarify treatment plan New primary care provider New source of health care financing Coordinate care with other providers New subspecialist Coordinate care with current physician providers Primary care provider education New school-related information Determination of decision making status

% Receiving service 52.1% 42.3% 40.9% 39.4% 38.0% 36.6% 36.6% 35.2% 32.4% 29.6% 28.2% 23.9% 21.1% 21.1% 19.7% 15.5% 9.9%

clinic processes including better directions and parking, scheduling follow up phone calls, and increasing the assistance in navigating more complex resources.

4. Conclusion The IS approach to the development of a transition support program has created a sustained collaboration between academic and community partners. Our experience in providing transition services demonstrates that a statewide transition support program is a viable delivery model to provide important resources for youth, families and primary care practices. In a previously published study, youth attending our transition program were noted to have more functional limita-

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tions, poorer reported health status, different diagnosis distribution, and higher levels of needed health services than those surveyed in the NS-CSHCN. Few parents prior to our transition services identified needs for routine adolescent preventive services while they did identify higher needs for the range of special services [27]. Despite our focus on non-urgent future planning, over one-third of patients received a new diagnosis and treatment at their transition assessment. We attribute this to our approach of obtaining a thorough review of systems, which is accommodated to specific issues associated with disabilities and adapted from other examples of health surveillance for adults with intellectual disabilities [28]. We believe that regional access problems for mental health and behavioral resources (particularly for individuals with intellectual disabilities) have an impact on the frequency of this service need in our program. Crosscommunication between primary care and specialty doctors and time spent in arranging complex services are critical components of the care coordinators’ work. The lower frequency of addressing school compared to employment issues may reflect the lack of previous exposure for families to employment services such as vocational rehabilitation and supported employment programs. Our team has developed a transition model by review of existing literature and other programs. Preliminary observational data of the care coordinator activities show parallels to those described for U.K. key workers: identifying and addressing the family needs, providing emotional support, providing information on eligible services, speaking on behalf of the family to other agencies or services, and coordinating clinical care [29]. The program utilizes a developmental approach to youth’s readiness through education and referrals from a team providing case management and advocacy [30]. Many of the components incorporated into the transition program services reflect activities advocated for inclusion in medical homes for children with complex needs [31]. The “whole person” approach as well as the close work with community partnerships reflect proposals from the AAP Council on Children with Disabilities [32]. Our efforts to foster growth of transition skills within existing and new medical homes [33] while still providing the additional support for those with high-intensity needs, uses an alternative approach for similar patients to that in the Minnesota Medical Home Center [34]. Implementation Science Stage 5: Innovation adapts and adjusts to particulars of program ex-

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pansion while still maintaining sufficient fidelity to the model and originating principles. We continue to experience a referral bias of youth who have more high intensity and complex needs. This may be the explicit value of a transition support program, to aid those youth and family who feel activated to work on their transition or who are more complex [35]. Our work in caring for youth predominantly with intellectual and physical disabilities has directed the skill development of the team to a better understanding of community and governmental services related to these types of disabilities. We have continued to collaborate with many of the same community organizations, although we no longer subcontract staff from the parent to parent network or the center for independent living. Outcome measures from good transition planning will require costly longitudinal evaluation. It may be difficult to measure [36] improved health outcomes or cost savings from better preventive and planning services. Despite the value in starting early in transition planning, our average age of program entry in year four was 16.6 years, decreased from 18 years of age during year 1. It is notable that families who self-refer tend to use the program at an earlier age. We continue to provide feedback to referring providers to encourage earlier referral and/or incorporation of transition preparation within their own practices. Of note, the frequency of self-referral has increased as the program ages and the team participates in community education outreach. While we initially used an open-ended period of care coordination for each family, we have now tailored the period of acute post-visit care coordination to last approximately 90 days. We have found that if we can “jump-start” families and decrease initial barriers, then they can continue their own progress towards transition goals. Families may call at any time to ask for assistance for a new issue of concern and are routinely called at each one year anniversary to offer an annual return visit. As our census of patients has grown, this post-transition assessment three month period helps to focus both care coordinators and families on making some changes and then working on maintaining them for the year. Functionally this means that each care coordinator is providing care coordination for about 3550 active families at any given time. Youth seem to need more education around their own self-management than can be constructed within the program’s clinic visits and phone care coordination support. The team continues to work on the devel-

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opment of additional self-management program activities, including a workshop series for youth and young adults with typical cognitive development and a youthcaregiver activities curriculum for individuals with intellectual disabilities. These youth education programs are in pilot phases in coordination with a local center for independent living and the local Down syndrome organization. Implementation Science Stage 6: Sustainability requires attention to long-term funding, facilities, staff turnover, governance and incorporation in the larger system of care. Full program maturation is generally realized over five to ten years. The cost of the transition support program is attributable to the high complexity of the referred patients. Funding for this program comes from four sources: state Title V funding constitutes the majority of the budget (approximately eighty percent) for the care coordination services, the School of Medicine supports twenty percent of the program director’s time and the team’s administrative space, the county health system provides in-kind clinical space, and clinical physician revenues from face-to-face visits cover only a small portion of physicians’ time. Office visits typically require two hours and the typical clinical billing for a half day of a physician’s time in our program is averaged at 7.54 relative value units. All the physicians work other half-days in primary care settings and meet their minimum clinical productivity requirements by tallies from both their primary care and transition care sessions when added together. The lack of compensation for physician non-face-to-face activities is a continued issue of concern. The collection of succinct medical summary data is cumbersome when performed as a retrospective record review by the transition program physicians. Funding this type of intensive transition work in a more disseminated manner will require payer systems to incorporate recommendations such as those to the Center for Medicare and Medicaid Services that payment be provided either as bundled care coordination payments or individual payments for non-face-to-face patient services such as team meetings or care plan oversight. Other limitations include problems with future planning occurring during periods of instability when patients with complex health needs and their families arrive during crises. Primary care providers do not yet have high familiarity with transition knowledge and recommendations to provide this service to patients without other education or support. It is our

hope that over time our interactions with primary care providers will serve to improve their transition skills, especially for less complex patients. Championing the model within the health care system, as well as bridging across to schools, state agencies and community advocacy organizations requires time. Although the emphasis of current recommendations focuses on the medical home as the center of transition activities [37, 38], we demonstrate the need for a consultative transition support program to help medical homes. Our program’s transition experts serve not only youth with complex and high intensity needs and their families, but also fulfill an unmet need by building expertise in transition and disseminating it into medical homes and across our community. The program’s training of community physicians and primary care trainees is ongoing and very important to affect culture, knowledge and skill development in the transfer of youth from the pediatric to the adult health care system. This type of regional transition support program should be further explored as an important resource for primary care practices, functioning in many ways like the intent of “regional extension centers” of the American Recovery and Reinvestment Act of 2009, offering technical assistance, guidance, and information to support and accelerate health care providers’ efforts, in this case, to provide for the transition of children with special health care needs into the adult world. This delivery of services by an expert transition team may also provide for further training of pediatric and adult subspecialists in supporting the implementation of effective transition polices and services within the larger health care system. Acknowledgements This work is supported through granting funds from the Indiana State Department of Health Maternal Child Health A70-0-069224 (MCH 200-11). The authors acknowledge the contributions and hard work of all founding and current members of the CYACC team including Gale Bellamy, Brandy Dickerson, Holly Elliott, Lorena Flaa, Christine Held, Brittaney Hindman, Sandy Love, Elise Montoya, Bethann Morton, Donna Gore Olsen, Hannah Ricker, Christina Rogers, Kerstin Sobus, MD, Jane Taylor-Holmes, Katie Weber, MD, Teri Whitaker. Conflict of interest The authors report no conflict of interest.

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