On the Threshold to the Adult Medical Home: Care Coordination in Transition

Abstract

<div class="ftContainer"> <style> ol{ list-style-type:none; } </style> <div class="ftAuthorNotes"> <p>Patience H. White, MD, MA, is Professor of Pediatrics and Medicine, George Washington University School of Medicine and Health Sciences, Washington, DC, and Chief Public Health Officer, the Arthritis Foundation. Patti Hackett, MEd, is Co-director, Healthy and Ready to Work National Resource Center, Natick, Massachusetts. </p> <p>Dr. White and Ms. Hackett have disclosed no relevant financial relationships.</p> <p>Address correspondence to: Patience H. White, MD, MA, fax 202 887 1002; or e-mail pwhite@arthritis.org.</p> </div> <div class="ftArticle"> <div class="ftAnchorFigure"> <a name="x00904481-20090820-11-fig1"></a> <a target="_blank" href="/images/content/PED/2009/10.3928_00904481-20090820-11-fig1.jpg"> <img class="ftThumbnail" alt="© iStockphoto.com/Andre Prokhorov" src="/images/content/PED/2009/10.3928_00904481-20090820-11-fig1.jpg"></img> </a> <p class="ftAnchorFigureCaption">© iStockphoto.com/Andre Prokhorov</p> </div> <p>The American Academy of Pediatrics (AAP) states that all children and youth must have a medical home “where health care services are accessible, family centered, continuous, comprehensive, coordinated and compassionate.” <sup> <a href="#x00904481-20090820-11-bibr1">1</a> </sup> Offering the promise of continuous care includes assisting people with their transitions from different settings such as from the hospital to their outpatient provider or from one healthcare/community provider to another. Such action is required when the youth or family relocates their primary household, or when a new provider with expertise in adult healthcare is needed due to the developmental stage and age of the youth. This article discusses the role of care coordination for transitioning youth to adult medial homes and share the stakeholders’ views of transition. It will also offer tools assisting in the transition process. </p> <div class="ftSection"> <h3>Background</h3> <p>Care coordination is a core tenet of the medical home and is the central link between the pediatric and adult health systems of care. Care coordination should include the planned hand off of care from one healthcare provider to another. Care coordination is a process facilitating linkage of children, youth, and their families to appropriate services and resources, which in this case are adult healthcare providers and adult services, in a coordinated effort to achieve optimal preventive health and disease management. <sup> <a href="#x00904481-20090820-11-bibr2">2</a> </sup> The intensity of the care coordination provided must adapt to the complexity of the youth’s medical condition, the youth’s capacity for independent decision-making, and the depth of community and family support systems available. </p> <p>This planning for moving from a pediatric to an adult healthcare provider is one of the final milestones of pediatric medical home providers. Yet many youth do not have a planned exit from their pediatric provider and move into the adult health arena, having limited knowledge of the adult health-care system. As a result youth do not have accessible, continuous healthcare services. Many healthy youth and some with special healthcare needs (SHCN) stop seeing their primary care pediatric provider sometime between the 10 to 18 years and do not access medical care until an acute crisis such as an injury, or in the case of women, when birth control is desired or during pregnancy. For men, acute illness, injury, or occupational requirements often drive the need for the first visit to an adult healthcare provider. This chasm between the adult and pediatric health delivery systems leaves all those traversing this gap without a medical home or coordinated care. This transition is the subject of this article and covers what the national medical associations [ie, AAP, American College of Physicians (ACP), American College of Physicians (ACP)-American Society of Internal Medicine (ASIM), and American Academy of Family Physicians (AAFP)] and institutions agree is needed in this transition and what youth, parents, pediatricians and adult physicians, and other primary care providers need to support the process. </p> <p>Life and health transitions require change and affect much of society as a part of normal, healthy development. Dreaming about the future and planning for that future are key components for the next step in one’s life plan. Thinking about preventive health issues is not on the radar screen for most youth as they grow toward adulthood; yet for youth with SHCN, learning how to manage their health as they take on adult roles is essential to their success. All youth with proper care and nurturing grow into adults who are expected to manage their own health, or depending on their capacity for independent decision-making, designate a circle of support to legally manage their health partially or totally. Timing and tempo of the transition process is essential to a successful transition, fostering a youth’s ability to assume adult roles. The transition from a pediatric to an adult medical home or from being cared for to caring for oneself with advice takes time, guidance, and practice marked with multiple successes and failures. For some it will mean transferring their care from a pediatric to an adult healthcare provider and for others it will mean a re-orientation of the clinical interaction within the same practice such as is seen in family medicine. A central action for this transition is that everyone has the opportunity to practice, master, and foster skills and expertise leading to a successful navigation of the adult-oriented systems, promoting health, and fully participating in adult society. </p> </div> <div class="ftSection"> <h3>The Definition, Goal, and Principles of Transition</h3> <p>The goal of transition is maximizing quality of life through lifelong functioning, social participation, and productive activities. Healthcare transition should provide healthcare that is family-centered, and ultimately patient-centered in the adult health system, continuous, comprehensive, coordinated, compassionate, and culturally competent and which is as developmentally appropriate as it is technically sophisticated. <sup> <a href="#x00904481-20090820-11-bibr3">3,4</a> </sup> Transition is defined as “the purposeful, planned movement of youth from child-centered to adult-oriented systems” with coordinated provision of developmentally appropriate and culturally competent health assessments, counseling, and referrals. <sup> <a href="#x00904481-20090820-11-bibr3">3</a> </sup> Partnerships among the individual, his or her family, school personnel, the healthcare system, local community and adult service organization representatives, and others play a central role in successful planning for transition (see <a href="#x00904481-20090820-11-boxedtext1">Sidebar 1</a>). </p> <div class="ftBoxedText"> <div class="ftSection"> <h4>Components of Successful Transition</h4> <ul> <li> <p>Self-determination</p> </li> <li> <p>Person-centered planning</p> </li> <li> <p>Preparation for adult healthcare</p> </li> <li> <p>Preparation for work</p> </li> <li> <p>Independence</p> </li> <li> <p>Inclusion in community life</p> </li> </ul> </div> </div> <p>The following is a list of general principles for successful transitions.</p> <div class="ftSection"> <h4>Transition Is a Process, not an Event</h4> <p>Many people envision transition as the day the youth leaves one practitioner and moves to another. This act of moving is really transfer not transition. Transition takes many years of planning culminating in the transfer of the youth to the adult healthcare provider. Planning should begin as early as possible on a flexible schedule, recognizing the youth’s increasing independence and capacity to make choices. Transition to adult services should occur proactively rather than during a crisis and when the youth’s illness is under good control. Skills and supports for the child/youth need to be identified incrementally (based on developmental ability) allowing practice (trial and error) while learning mastery to implement. Whenever possible, children/youth need to be recognized as the central focus, not their parents. This self-differentiation is critical in the passage to adulthood. Families are temporary spokespersons until the age of majority, when and if a legal determination is otherwise made (ranging from full independence to needing ongoing support up to full guardianship). </p> </div> <div class="ftSection"> <h4>The Transition Process Should Begin Early</h4> <p>The transition process should begin at diagnosis or in middle school years and should include long-term sequential planning toward goals of independence to interdependence and self-management. Several studies point out that the period between 11 and 13 years is an optimum time to start the process in order to have the best outcome. Geeneen’s study <sup> <a href="#x00904481-20090820-11-bibr5">5</a> </sup> pointed out that parents and providers agreed that youth should be transferred to an adult provider at about 17 years. The literature today suggests the process of transition planning should begin at the latest between 11 to 13 years, which is when the youth is most engaged in the process before other issues become more captivating for the youth, such as their peer-group relations and social activities. <sup> <a href="#x00904481-20090820-11-bibr6">6</a> </sup> The outcome is to learn, practice, and gain health skills that will become habitual, routine, and lead to compliant health maintenance behavior. To assist the family in starting this process, the practice should post a written policy of when transition to an adult medical home is expected to occur. </p> </div> <div class="ftSection"> <h4>Coordination</h4> <p>Coordination among healthcare, educational, vocational, and social service systems is essential. This inter-disciplinary method provides a holistic approach to planning for the transfer. </p> </div> <div class="ftSection"> <h4>Changing Roles</h4> <p>Acknowledging the inevitable change in the roles of all involved (youth, family, and healthcare professionals) can be a challenge but is key to a successful transition for the adolescent, especially for those with SHCN. Parents want anticipatory guidance from their healthcare professional on how to transfer their skills and knowledge to their youth. A recent report from the Care Project suggests parents of youth with SHCN report a significantly lower health-related quality of life than parents of youth without SCHN. A family-centered approach was recommended and is paramount in transition planning. </p> </div> <div class="ftSection"> <h4>Self-Determination Skills</h4> <p>Self-determination skills should be fostered as the youth grows and changes. Best practices for transition services call for a youth-centered and asset-oriented approach involving young people as decision makers during the entire transition process. If the youth requires periodic or full-time support based on changing health status or cognitive limitations, it is imperative that legal assurances are in place protecting the choices the youths want, or the “trusted other” approves. A health power of attorney, and advance directives need to be in place. Some of these documents are time limited and require renewals; others can be changed when needed. These issues, along with a decision about end-of-life care, need to be discussed by the entire family and reviewed annually with the proper paperwork updated. </p> </div> <div class="ftSection"> <h4>Care in a Developmentally Appropriate Environment</h4> <p>Care in a developmentally appropriate environment is essential and many national standards include transition. For example, Healthy People 2010 goals and State Title V block grants include transition and promote youth independence, and recognize the need for vocational and educational planning as youth age into adulthood. </p> </div> </div> <div class="ftSection"> <h3>Stakeholders’ Views of Medical Transition-Families and Youth</h3> <p>Youth, parents, and providers all have stated their wishes and challenges around transition. In the past decade, many surveys have asked youth with SHCN what they believe are the best ways to build a successful adult life (employment, college, health, and independent living). Youth stated that they wanted to learn how to stay healthy, find a good doctor who treats adults, have family members expect them to be a successful adult, figure out what accommodations they need and how to ask for them, know what could happen if their condition gets worse, what to do in an emergency, and how to find and keep health insurance. <sup> <a href="#x00904481-20090820-11-bibr7">7</a> </sup> </p> <p>After the diagnosis, families initially want to learn how to manage the needs of their youth with SHCN and soon will think about the future. They want to know what to do to prepare their child for adulthood and how to navigate through the maze of systems with their youth (see <a href="#x00904481-20090820-11-boxedtext2">Sidebar 2</a>, page 515). </p> <div class="ftBoxedText"> <div class="ftSection"> <h4>Top 10 Transition Activities Parents Want Their Healthcare Professional to Do <sup> <a href="#x00904481-20090820-11-bibr5">5</a> </sup> </h4> <ol class="ftOrdered"> <li> <p>1. Take care of my child’s health and his/her disability.</p> </li> <li> <p>2. Coordinate my child’s care with other healthcare professionals.</p> </li> <li> <p>3. Help my child get health insurance.</p> </li> <li> <p>4. Assist with finding an adult health-care provider for my child.</p> </li> <li> <p>5. Teach my child to manage his/her own health.</p> </li> <li> <p>6. Work with school to coordinate care.</p> </li> <li> <p>7. Discuss with my child how to take care of his/her health.</p> </li> <li> <p>8. Help my child to be successful at work.</p> </li> <li> <p>9. Connect my child with other services in the community.</p> </li> <li> <p>10. Screen my child for mental health problems.</p> </li> </ol> </div> </div> <p>Yet despite these wishes, a 2005-2006 National Survey of 40,804 families with youth with SHCN younger than 18 years <sup> <a href="#x00904481-20090820-11-bibr8">8</a> </sup> found that only 48.8% of families stated their youth received the services necessary to make appropriate transitions to adult healthcare, work, and independence. For those who said they received transition services, fewer than half of the respondents said their health-care provider talked with them about healthcare needs as their child becomes an adult or encouraged their youth to learn about health and medications. Only one-fifth of the providers discussed with them how to obtain or keep some type of health insurance coverage as their child becomes an adult. </p> <div class="ftSection"> <h4>Pediatric Providers</h4> <p>The National Alliance to Advance Adolescent Health <sup> <a href="#x00904481-20090820-11-bibr9">9</a> </sup> collaborated with the American Academy of Pediatrics (AAP) and asked questions about transition practices on the periodic survey #71 of AAP members in 2008. They found the following percentages of pediatricians who reported nearly all of the time they did the following for youth with SHCN: 62% felt transition planning should start between 18 to 21 years for all youth, 47% assisted with a referral to family or internal medicine, 33% discussed consent and confidentially issues prior to 18 years, 27% created a portable medical record summary, 23% offered education and consultative support to families or adult providers, 19% assisted in identifying insurance options after 18 years, and 12% created an individualized health-care transition plan. Most pediatricians admitted they 1) lacked knowledge of community resources, 2) could not find adult primary or specialty providers to care for their young adult patients, 3) had difficulty breaking the bond with adolescents and parents, 4) had difficulty obtaining reimbursement for the time it took to assist youth with transition, and 5) knew that their adolescents could not describe their illness and their office staff lacked skills to assist youth in transition. <sup> <a href="#x00904481-20090820-11-bibr9">9</a> </sup> </p> </div> <div class="ftSection"> <h4>Adult Providers</h4> <p>In 2008, the N.H. Department of Health and Human Services surveyed 180 adult practitioners on transition issues <sup> <a href="#x00904481-20090820-11-bibr10">10</a> </sup> and found approximately 50% rarely/never received a medical summary or call, and as a result most youth that came to their practice experienced a care gap. They also had inadequate time, staffing, reimbursement, and support from pediatric generalists/specialists to manage the transition of youth with SHCN. To help them provide better transition care, 90% wanted a written summary, support from specialists, and to speak with the youth’s previous health-care provider. They felt that transfer should occur between 18 and 21 years. </p> </div> </div> <div class="ftSection"> <h3>Steps Pediatric Practices and Practitioners Can Take to Facilitate a Smooth Transition</h3> <p>In reviewing the various perspectives on transition, there are many mismatches in what youth, parents, and professionals desire for their own transition. With thoughtful communication, their desires and fears can be discussed so all have a more satisfying experience and the transition process proceeds smoothly between the pediatric and adult healthcare systems. All parties need to listen to each other and provide coordinated services bridging the gap to the next provider. Progress needs to be made in transition care financing, communication of medical information between pediatric and adult care systems, pediatric practice transition preparation training, adult provider availability, and consumer education and readiness for the change training. Providers must close the gap in knowledge and communication among all the parties involved in the process and move transition practices and services into the mainstream processes of their practices. Below are some first steps and tools that practitioners can utilize. </p> <div class="ftSection"> <h4>Develop a Transition Policy</h4> <p>One of the most important first steps to start the transition process is to develop a transition policy agreed upon by the practice team ensuring consensus and mutual understanding of the processes involved and providing a structure for evaluation. The policy should be posted for viewing by youth and families, <sup> <a href="#x00904481-20090820-11-bibr11">11</a> </sup> yet many practices have not developed such a written policy that is endorsed by their team. <sup> <a href="#x00904481-20090820-11-bibr12">12</a> </sup> (See <a href="#x00904481-20090820-11-boxedtext3">Sidebar 3</a> for a transition policy template.) A key component of such a policy is the preparation for transition of healthcare time-line including when most youth should be seen alone for their healthcare visit. Starting between the 11 to 13 years allows time for the youth to practice the skills required for their changing role, time for parents to let their youth have increased independence, and learn who they need to ask for help (develop adult interdependent relationships). It allows time for healthcare providers to prepare for the youth to leave their practice and time for exploration of options and obstacles with continuing healthcare insurance coverage, and applying/maintaining/leaving government benefits (Social Security, Vocational Rehabilitation). If the youth has the capacity for independent decision-making, having a policy outlining when the youth will be seen alone and when they are expected to orchestrate their own healthcare should also be posted. </p> <div class="ftBoxedText"> <div class="ftSection"> <h4>Transition Policy Template</h4> <p>Definition: What is it?</p> <p>Outcome: When the youth has left my practice, he/she should know/have …</p> <p>Timeline: Age of initiation and explanation of exceptions</p> <p>Components: See AAP consensus statement (see page 516)</p> <p>Practice processes</p> <p>Evaluation: Plan-do-study-act (PDSA) cycle</p> </div> </div> </div> <div class="ftSection"> <h4>Create a Transition Passport</h4> <p>Make a transition passport portable, such as saving information on a flash drive, or storing it on the youth’s/family’s computer so it readily available when the youth and family require it. <a href="#x00904481-20090820-11-boxedtext4">Sidebar 4</a> (see page 518) offers a basic checklist for a youth transition passport, expanded according to the capacity of the youth for decision-making and medical complexity. For youth without SHCN, a final visit where the one-page medical summary including essential components (see <a href="#x00904481-20090820-11-boxedtext4">Sidebar 4</a>, page 518) could be provided sending a message about future health prevention. This could inspire some youth to take better care of themselves during this transition time, rather than dropping out of the healthcare system and reappearing as adults with poor health. </p> <div class="ftBoxedText"> <div class="ftSection"> <h4>Basic Transition Template for All Youth</h4> <p>Allergies</p> <p>Immunization history</p> <p>Episodic events (eg, injury history)</p> <p>Build Health Family Tree ( <a target="_blank" href="https://familyhis-tory.hhs.gov/">https://familyhis-tory.hhs.gov/</a>) </p> <p>Prevention actions: <ul> <li>General: nutrition, physical activity guidelines, routine screenings, tests according to age</li> <li>Specific actions/screenings required due to the family health tree (eg, heart disease)</li> <li>How to handle medical emergencies, who to contact in case of emergency</li> </ul> </p> <p>List medical/dental providers with telephone numbers</p> <p>Emergency contact numbers near or programmed in phone</p> </div> </div> </div> <div class="ftSection"> <h4>Review the AAP/ACP-ASIM/AAFP Transition Consensus Statement</h4> <p>Review the AAP/ACP-ASIM/AAFP Transition Consensus Statement and activate suggested processes around the critical transition steps outlined below: </p> <p>In 2001, the Maternal Child Health Bureau (MCHB) convened an expert panel to draft a Consensus Statement on Health Care Transition for Young Adults with Special Health Care Needs. <sup> <a href="#x00904481-20090820-11-bibr13">13</a> </sup> The MCHB outlined six critical first steps “that the medical profession needs to take to realize the vision of a family-centered, continuous, comprehensive, coordinated, compassionate, and culturally-competent health care system that is as developmentally appropriate as it is technically sophisticated.” This Consensus Statement was endorsed in 2002 by the AAP, ACP-ASIM, and AAFP. </p> </div> <div class="ftSection"> <h4>Critical Step 1: Medical Home Primary Care</h4> <p>Ensure that all young people with SHCN have an identified healthcare professional who attends to the unique challenges of transition and assumes responsibility for current healthcare, care coordination, and future healthcare planning. This responsibility is executed in partnership with other child and adult healthcare professionals, the young person, and his or her family. </p> <p>Although the consensus statement refers to youth with SHCN, all youth deserve a medical home offering guidance for moving from pediatrics into adult healthcare system. </p> </div> <div class="ftSection"> <h4>Critical Step 2: Core Knowledge and Skills</h4> <p>Identify the core knowledge and skills required to provide developmentally appropriate healthcare transition services to all CYSHCN, making them part of teaching and certification requirements for trainees in primary care and physicians in practice. </p> <p>To understand areas a practice should incorporate into their processes and procedures, see Healthy and Ready to Work (HRTW) Core Knowledge and Skills Checklist (see page 518). </p> <p>An important issue requiring a flexible approach by the practice is that some youth, depending upon decision-making ability, will require a more formal support for partnering around their medical care. This may be the family or another trusted adult and when needed can be legalized through a “power of attorney” for medical decisions. The issue of a power of attorney should be addressed before the youth is 18 years. </p> </div> <div class="ftSection"> <h4>Critical Step 3: Portable Medical Summary</h4> <p>Prepare and maintain an up-to-date medical summary that is portable and accessible. This information is critical for successful healthcare transition and provides the common knowledge base for collaboration among health-care professionals. </p> <p>An essential component of transition for any youth is the communication of information from one set of providers to another. This can be placed in the electronic medical record, given to the youth and families on a flash drive, or stored on the youth’s/family’s computer. It is always updated and available as a communication tool. See an example that is available at <a target="_blank" href="http://hrtw.org/tools/documents/HRTW-TOOL-Template-Portable-Medical-Summary-July-2007.doc">hrtw.org/tools/documents/HRTW-TOOL-Template-Portable-Medical-Summary-July-2007.doc</a>. The one-page summary also includes current procedural terminology (CPT) codes to assist the next healthcare provider in billing for the services offered. Suggested additional components for youth with SHCN are: <ul> <li>List the critical problems that are life threatening,</li> <li>List hospitalizations, treatment protocols, past surgeries,</li> <li>List medications (prescribed, over the counter, allergies, and alternative medicines/herbs),</li> <li>List devices and equipment needed (wheel chairs, braces, etc.), List advanced directives and outline of resuscitation orders, and </li> <li>List Power of Attorney, health surrogate, guardianship.</li> <li>List levels of supports needed for care (family, grandparents, home health, others); method of learning for the youth (verbal, verbal reinforced with written materials, verbal/written with demonstration); and necessary communication supports (picture cards, sign language, gestures, verbal cues, or assistive technology devices providing verbal communication for the youth). </li> </ul> </p> </div> <div class="ftSection"> <h4>Critical Step 4: Healthcare Transition Plan</h4> <p>Create a written healthcare transition plan by 14 years together with the young person and family. At a minimum, this plan should include what services need to be provided, who will provide them, and how they will be financed. This plan should be reviewed and updated annually and whenever there is a transfer of care. </p> <p>The Health Care Transition plan should include the following 9 components:</p> <p> <b>1. Discussion of differences in the cultures of the pediatric and adult healthcare systems.</b> </p> <p>Preparation for transition prior to the transfer of care is central to success. Youth and their families need support, encouragement, education, and time to practice essential skills to learn how to be best prepared for maintaining health and wellness, and accessing care in the adult healthcare system. They find they have to negotiate two contrasting cultures and systems of healthcare: the pediatric and adult healthcare systems. Adult-oriented systems focus on the individual not the family unit and are rarely structured to provide multidisciplinary care. Pediatricians focus more on the family and, as pointed out by Mc-Manus, <sup> <a href="#x00904481-20090820-11-bibr9">9</a> </sup> many of the pediatric providers are reluctant to “let go” of caring for their youth with SHCN. Plan to discuss these differences and strategize how the youth and family will negotiate these differences and add the skills required to the youth’s transition plan. </p> <p> <b>2. The changing roles and skills to be acquired by the youth and family and coordinate the skill development with other systems such as education. </b> </p> <p>Coordination of care is a cornerstone of the medical home and is an essential component of a successful transition process. <sup> <a href="#x00904481-20090820-11-bibr2">2</a> </sup> Developing a common medical transition plan among all providers can assist in this process. There are various resources discussing the role of care coordination in transition. <sup> <a href="#x00904481-20090820-11-bibr14">14,15</a> </sup> In light of the differences in the two approaches of pediatrics and adult healthcare outlined above and understanding the capacity of the youth, develop a transition plan that matches the demands of the new system to the skills needed. If the demands match the skills, there will be far less anxiety on behalf of the youth and family as they move through the transition process. Steps to be taken include: </p> <p> <b>a) Delineating the necessary youth and family skills.</b> </p> <p>Healthy and Ready to Work (HRTW) offers tools listing skills for inclusion in a transition plan. This can be used as a screening tool to decide which skills need to be acquired. </p> <p> <b>b) Assisting youth in providing a concise medical report.</b> </p> <p>Central to receiving appropriate healthcare is the ability to clearly describe the medical symptoms and ask questions about the process, outcome, and therapy. This was a major barrier mentioned in the AAP periodic survey. <sup> <a href="#x00904481-20090820-11-bibr9">9</a> </sup> If the youth is dependent, the health surrogate should also learn to communicate this information. The one-page medical summary discussed previously is an essential part of the interaction and must be kept updated after the appointment. In addition, start having the youth seen by the provider without the parents present to test his/her reporting skills. Encourage the child/youth to come up with five questions to ask their doctor at each visit. </p> <p> <b>3. Creation of a Portable Medical record</b> (see Critical Step 3, page 517). </p> <p> <b>4. Creation of an emergency plan.</b> </p> <p>Youth and their families should be prepared for a medical emergency. The AAP has guidelines for this process and the youth should utilize In Case of Emergency (ICE) designation in a cell phone with the appropriate numbers and medications/allergies listed after the ICE designation. Most youth carry a cell phone, and this is the first place the emergency personnel will look for important numbers and information. Youth are interested in knowing what to do if their condition worsens and to know the signs if their health is deteriorating. See <a target="_blank" href="http://www.icesticker.com/">http://www.icesticker.com/</a>. </p> <p> <b>5. Outline of health promotion actions.</b> </p> <p>Regular exercise and good nutrition are the essentials to good health. Youth with SHCN have additional health risks, so screening and preventive counseling on risk behaviors are essential in the transition process. Utilizing the prevention schedules for adolescent health such as GAPS is important to for youth’s general health. In 2008, new physical activity guidelines for all youth including youth with disabilities were released. <sup> <a href="#x00904481-20090820-11-bibr16">16,17</a> </sup> </p> <p> <b>6. Outline of educational goals.</b> </p> <p>Pediatricians should assist youth in attaining education, as education level is related to health outcomes, and attending postsecondary education increases the likelihood of attaining adult social roles among young adults with childhood disabilities. There are resources for pediatricians on promoting postsecondary education and work for youth with disabilities. <sup> <a href="#x00904481-20090820-11-bibr18">18,19</a> </sup> In preparation for postsecondary education, develop questions to elucidate the accommodations needed. </p> <p> <b>7. Outline of career/work goals.</b> </p> <p>Attendance and volunteer and paid jobs during high school improves success in the workplace. Emphasize the importance of being on time for school and appointments as this translates to employment skills needed in maintaining employment. </p> <p> <b>8. Discussion of independence and transportation issues.</b> </p> <p>Offer handouts with community resources such as summer camps and travel training/resources.</p> <p> <b>9. Visit an adult practice or plan a joint visit with an adult provider.</b> </p> <p>To assist the youth in understanding the adult healthcare system and finding in an appropriate adult medical home, plan an observational visit to an adult practice a year or more before the actual date of transfer. The youth and family can experience the adult system and then return to the pediatric provider to assess and augment the level of skills still needed. This also affords the youth and family the opportunity to choose the adult provider when the youth is medically stable. Alternatively, plan a joint visit with an adult provider for verbal transfer of medical information with the medical record and discussion of remaining skills needed from the transition plan. <sup> <a href="#x00904481-20090820-11-bibr19">19</a> </sup> </p> </div> <div class="ftSection"> <h4>Critical Step 5: Screening</h4> <p>Apply the same guidelines for primary and preventive care for all adolescents and young adults, including those with SHCN, recognizing the latter may require more resources and services than do other young people to optimize their health. Examples of such guidelines include the American Medical Association’s Guidelines for Adolescent Preventive Service, the National Center for Education in Maternal and Child Health’s Bright Futures: Guidelines for Health Supervision of Infants, Children, and Adolescents, and the US Public Health Service’s Guide to Clinical Preventive Services. In addition to the prevention health screening mentioned above, screen for mental health issues. </p> </div> <div class="ftSection"> <h4>Critical Step 6: Health Insurance</h4> <p>Ensure affordable, continuous health insurance coverage for all young people with SHCN throughout adolescence and adulthood. This insurance should cover appropriate compensation for 1) healthcare transition planning for all young people with special health care needs, and 2) care coordination for those who have complex medical conditions. </p> <p>Providers caring for youth should help them to maintain health insurance through transition and beyond. There are three situations when a parent’s/family’s health insurance coverage may be extended to cover adult children after they turn 19 years: 1) He/she is a student (usually 22 to 25 years); 2) He/she is an adult-dependent disabled child (no age limit as long as parent does not change jobs); or 3) A parent opts to continue coverage through Consolidated Omnibus Budget Reconciliation Act (COBRA) due to a change of employment status of the insured family member. Youth who are students can often have their coverage continued up to 22 years if they are unmarried, full-time students, and dependent upon their parents/family for support and maintenance. Some plans have higher age limits. </p> <p>Adult disabled children are dependent if the parent/guardian provides more than 50% of yearly living expenses, and the parents declare the youth as a dependent on the federal income tax return, or as specified in a divorce decree. Once approved, insurance companies will request annual re-certification. Check to see if the youth’s state mandates this approach via their state’s health insurance commission. As of 2009, 13 states do not (Alabama, Alaska, Colorado, Delaware, the District of Columbia, Iowa, Kansas, Kentucky, Oklahoma, Oregon, Pennsylvania, Rhode Island, and West Virginia). </p> <p>In the spring of 2006, many states were exploring extending the age of family plan coverage for young adults with and without a disability to 25 to 30. Check your state’s plan. As of 2009, the following states (Colorado, Connecticut, Delaware, Florida, Idaho, Indiana, Illinois, Maine, Maryland, Massachusetts, Michigan, Montana, New Hampshire, New Jersey, New Mexico, Oregon, Pennsylvania, Rhode Island, South Dakota, Texas, Vermont, Virginia, Washington, and West Virginia) have adopted this approach. </p> </div> </div> <div class="ftSection"> <h3>Conclusion</h3> <p>All youth should have the opportunity of having some guidance about how to maintain their health and how to negotiate the adult healthcare system. Youth with special healthcare needs deserve a range of opportunities and require a higher level of support to access a coordinated adult system of care. There is much work that needs to be done to make the transition from pediatric to adult healthcare a seamless one. The challenge to all healthcare providers is to collaborate to simultaneously improve the system serving all youth and prepare them with the knowledge and skills necessary at the level required to promote self-determination and navigate the adult systems of care successfully. </p> </div> <div class="ftRefList"> <h3>References</h3> <ol> <a name="x00904481-20090820-11-bibr1"></a> <li> Medical Home Initiatives for Children with Special Health Care Needs Project Advisory Committee. American Academy of Pediatrics. The medical home. <i>Pediatrics</i>. 2002;110(1 Pt 1):184-186. </li> <a name="x00904481-20090820-11-bibr2"></a> <li> American Academy of Pediatrics Council on Children with Disabilities. Care coordination in the medical home: integrating health and related systems of care for children with special health care needs. <i>Pediatrics</i>. 2005;116(5):1238-1244. </li> <a name="x00904481-20090820-11-bibr3"></a> <li> Kelly AM, Kratz B, Bielski M, Reinhart PM. Implementing transition for youth with complex chronic conditions using the medical home model. <i>Pediatrics</i>. 2002;110(6 Pt 2):1322-1327. </li> <a name="x00904481-20090820-11-bibr4"></a> <li> Rosen DS, Blum RW, Britto M, Sawyer SM, Siegel DMSociety for Adolescent Medicine. Transition to adult health care for adolescents and young adults with chronic conditions: position paper of the Society for Adolescent Medicine. <i>J Adolesc Health</i>. 2003;33(4):309-311. doi:10.1016/S1054-139X(03)00208-8 <a target="_blank" href="http://dx.doi.org/10.1016/S1054-139X(03)00208-8"> [CrossRef]</a> </li> <a name="x00904481-20090820-11-bibr5"></a> <li> Geenen SJ, Powers LE, Sells W. Understanding the role of health care providers during the transition of adolescents with disabilities and special health care needs. <i>J Adolesc Health</i>. 2003;32(3):225-233. doi:10.1016/S1054-139X(02)00396-8 <a target="_blank" href="http://dx.doi.org/10.1016/S1054-139X(02)00396-8"> [CrossRef]</a> </li> <a name="x00904481-20090820-11-bibr6"></a> <li> Wolf-Branigin M, Schuyler V, White P. Improving quality of life and career attitudes of youth with disabilities: experiences from the Adolescent Employment Readiness Center. <i>Research on Social Work Practice</i>. 2007;17:324-333. doi:10.1177/1049731506295623 <a target="_blank" href="http://dx.doi.org/10.1177/1049731506295623"> [CrossRef]</a> </li> <a name="x00904481-20090820-11-bibr7"></a> <li> MCHB funded SPRANS transition grant a joint survey conducted by the Minnesota Title V CSHCN Program and the PACER Center in 1995 1300 students ages 13-19 years and The National Youth Leadership Network (NYLN) in 2002, conducted an email survey (300 responses) targeted at youth with disabilities, ages 16-24. </li> <a name="x00904481-20090820-11-bibr8"></a> <li> Data Resource Center, <a target="_blank" href="http://www.cshcndata.com">www.cshcndata.com</a>. Accessed August 18, 2009. </li> <a name="x00904481-20090820-11-bibr9"></a> <li> McMannus M, Fox H, O’Connor et al. Pediatric perspectives and practices on transitioning adolescents with special health care needs to adult health care, National Alliance to Advance Adolescent Health, Fact Sheet #6. October2008. </li> <a name="x00904481-20090820-11-bibr10"></a> <li> N.H. Department of Health and Human Services. <i>Survey of adult health care providers about health care transition for youth with special health care needs</i>. Concord, NH; 2008. </li> <a name="x00904481-20090820-11-bibr11"></a> <li> McDonogh JE, Shaw KL, Southwood TR. Translating policy into practice. Development of a transitional care policy for youth with chronic illness. <i>J Exp Rheumatol</i>. 2005;23:S88. </li> <a name="x00904481-20090820-11-bibr12"></a> <li> Lotstein DS, McPherson M, Strickland B, Newacheck PW. Transition planning for youth with special health care needs: results from the National Survey of Children with Special Health Care Needs. <i>Pediatrics</i>. 2005;115(6):1562-1568. doi:10.1542/peds.2004-1262 <a target="_blank" href="http://dx.doi.org/10.1542/peds.2004-1262"> [CrossRef]</a> </li> <a name="x00904481-20090820-11-bibr13"></a> <li> American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians-American Society of Internal Medicine. A consensus statement on health care transitions for young adults with special health care needs. <i>Pediatrics</i>. 2002;110(6):1304-1306. </li> <a name="x00904481-20090820-11-bibr14"></a> <li> Johnson CP, Kastner TAAmerican Academy of Pediatrics Committee/Section on Children with Disabilities. Helping families raise children with special health care needs at home. <i>Pediatrics</i>. 2005;115(2):507-511. doi:10.1542/peds.2004-2520 <a target="_blank" href="http://dx.doi.org/10.1542/peds.2004-2520"> [CrossRef]</a> </li> <a name="x00904481-20090820-11-bibr15"></a> <li> Bodenheimer T. Coordinating care: a perilous journey through the health care system. <i>N Engl J Med</i>. 2008;358(10):1064-1071. doi:10.1056/NEJMhpr0706165 <a target="_blank" href="http://dx.doi.org/10.1056/NEJMhpr0706165"> [CrossRef]</a> </li> <a name="x00904481-20090820-11-bibr16"></a> <li> Suris JC, Michaud PA, Akre C, Sawyer SM. Health risk behaviors in adolescents with chronic conditions. <i>Pediatrics</i>. 2008;122(5): e1113-e1118. doi:10.1542/peds.2008-1479 <a target="_blank" href="http://dx.doi.org/10.1542/peds.2008-1479"> [CrossRef]</a> </li> <a name="x00904481-20090820-11-bibr17"></a> <li> The Centers for Disease Control. Resources for Physical Activity. <a target="_blank" href="http://www.cdc.gov/physica-lactivity/">http://www.cdc.gov/physica-lactivity/</a>. Accessed June 1, 2009. </li> <a name="x00904481-20090820-11-bibr18"></a> <li> Committee on Children with Disabilities. American Academy of Pediatrics. The role of the pediatrician in transitioning children and adolescents with developmental disabilities and chronic illnesses from school to work or college. <i>Pediatrics</i>. 2000;106(4);854-856. </li> <a name="x00904481-20090820-11-bibr19"></a> <li> Van NaardenBraun K, Yeargin-Allsopp M, Lollar D. A multidimensional approach to the transition of youth with developmental disabilities into young adulthood: the acquisition of adult social roles. <i>Disability and Rehabilitation</i>. 2006;28:915-926. doi:10.1080/09638280500304919 <a target="_blank" href="http://dx.doi.org/10.1080/09638280500304919"> [CrossRef]</a> </li> </ol> </div> <div class="ftSidebarText"> <div class="ftBoxedText"> <h3>CME Educational Objectives</h3> <ol class="ftOrdered"> <li> <p>1. Outline the role of care coordination for transitioning youth to adult medical homes.</p> </li> <li> <p>2. Distinguish the different tasks required of each member of the care team to achieve a smooth transition to an adult care model.</p> </li> <li> <p>3. Identify tools useful for assisting in the transition process.</p> </li> </ol> </div> <div class="ftBoxedText"> <div class="ftSection"> <h4>Components of Successful Transition</h4> <ul> <li> <p>Self-determination</p> </li> <li> <p>Person-centered planning</p> </li> <li> <p>Preparation for adult healthcare</p> </li> <li> <p>Preparation for work</p> </li> <li> <p>Independence</p> </li> <li> <p>Inclusion in community life</p> </li> </ul> </div> </div> <div class="ftBoxedText"> <div class="ftSection"> <h4>Top 10 Transition Activities Parents Want Their Healthcare Professional to Do <sup> <a href="#x00904481-20090820-11-bibr5">5</a> </sup> </h4> <ol class="ftOrdered"> <li> <p>1. Take care of my child’s health and his/her disability.</p> </li> <li> <p>2. Coordinate my child’s care with other healthcare professionals.</p> </li> <li> <p>3. Help my child get health insurance.</p> </li> <li> <p>4. Assist with finding an adult health-care provider for my child.</p> </li> <li> <p>5. Teach my child to manage his/her own health.</p> </li> <li> <p>6. Work with school to coordinate care.</p> </li> <li> <p>7. Discuss with my child how to take care of his/her health.</p> </li> <li> <p>8. Help my child to be successful at work.</p> </li> <li> <p>9. Connect my child with other services in the community.</p> </li> <li> <p>10. Screen my child for mental health problems.</p> </li> </ol> </div> </div> <div class="ftBoxedText"> <div class="ftSection"> <h4>Transition Policy Template</h4> <p>Definition: What is it?</p> <p>Outcome: When the youth has left my practice, he/she should know/have …</p> <p>Timeline: Age of initiation and explanation of exceptions</p> <p>Components: See AAP consensus statement (see page 516)</p> <p>Practice processes</p> <p>Evaluation: Plan-do-study-act (PDSA) cycle</p> </div> </div> <div class="ftBoxedText"> <div class="ftSection"> <h4>Basic Transition Template for All Youth</h4> <p>Allergies</p> <p>Immunization history</p> <p>Episodic events (eg, injury history)</p> <p>Build Health Family Tree ( <a target="_blank" href="https://familyhis-tory.hhs.gov/">https://familyhis-tory.hhs.gov/</a>) </p> <p>Prevention actions: <ul> <li>General: nutrition, physical activity guidelines, routine screenings, tests according to age</li> <li>Specific actions/screenings required due to the family health tree (eg, heart disease)</li> <li>How to handle medical emergencies, who to contact in case of emergency</li> </ul> </p> <p>List medical/dental providers with telephone numbers</p> <p>Emergency contact numbers near or programmed in phone</p> </div> </div> </div> </div> </div>