Enhancing Health Care Transition for Youth and Young Adults Living with Chronic Medical Conditions and Disabilities Suggestions for Reform

Transcription

1 Enhancing Health Care Transition for Youth and Young Adults Living with Chronic Medical Conditions and Disabilities Suggestions for Reform Brenda L. Gleason, M.A., M.P.H. Jo Palmer Santi K.M. Bhagat, M.D., M.P.H. John Reiss, Ph.D. October 2009

2 Gleason B, Palmer J, Bhagat S, Reiss J. Enhancing Health Care Transition for Youth and Young Adults Living with Chronic Medical Conditions and Disabilities: Suggestions for Reform. Coalition for Young Adults Living with Chronic Medical Conditions and Disabilities. October 2009.

3 Preface This white paper was produced by Physician-Parent Caregivers, Inc. on behalf of the Coalition for Young Adults Living with Chronic Medical Conditions and Disabilities. Brenda Gleason, M.A., M.P.H., and Jo Palmer of M2 Health Care Consulting, Santi Bhagat, M.D., M.P.H., of Physician- Parent Caregivers and John Reiss, Ph.D., of the University of Florida authored this paper with ongoing input from Coalition members. The Coalition is committed to enhancing research, training and reform efforts related to quality health care for youth and young adults living with chronic medical conditions and disabilities. This paper is the first in a series. For a complete list of coalition members, please visit us online at About PPC Physician-Parent Caregivers, Inc. (PPC) believes that all children, young adults, and their families are entitled to Quality Health Care. Building on the unique perspective of physicians who are parents of Children & Young Adults with Chronic Medical Conditions & Disabilities (CMCD), PPC works with children, young adults, families, and physicians to find solutions for the delivery of optimal health care. As a grassroots, voluntary, board-run organization, we strive to represent the views of families and physicians in the community. While a framework has been established to advance the agenda for children and young adults living with CMCD, we as a nation have just begun to take action. Much work remains to be done and a sense of urgency is needed. PPC s goal is to find solutions that will make quality health care the norm for children and young adults with CMCD. Visit us at

4 Executive Summary...1 Background...4 Youth and Young Adults with CMCD Defined...5 Types of Conditions...6 Developmental Disabilities...7 Types of Care...8 Transition...8 Health Care Transition...10 Transition from Pediatric to Adult Insurance Coverage...12 Moving from Public to Private Insurance Coverage...13 Moving from Private Family Coverage to Private Individual Coverage...15 Coordination...17 Care Coordination Defined...18 The Medical Home...19 Reimbursement Issues for Care Coordination Activities...20 Transition from Pediatric to Adult Medical Care...21 Health Care Transition Clinics...22 Access to Care for Young Adults with CMCD...23 Lack of Specialty Care Providers...25 Young Adults Struggle to Find Needed Health Care...26 Recommendations for Health Care Reform...29 Implementation of Data Collection and Analytic Activities...30 Streamlining and Simplifying Public Programs...30 Conclusion...32 Endnotes...34

5 Executive Summary Enhancing Health Care Transition for Youth and Young Adults Living with Chronic Medical Conditions and Disabilities: Suggestions for Reform Almost one in five, or 8.8 million, American households include at least one child with a chronic medical condition or disability. The number of young people with chronic medical conditions and disabilities (CMCD) has increased over the past four decades to over 10 million children and 5 million young adults. Although youth with CMCD account for a small percentage of individuals under age 17, the costs associated with treating and caring for this population is approximately three times higher than for those without CMCD. In Medicaid, youth with disabilities account for less than 10% of recipients, but nearly 30% of costs. The combination of 15 million youth and young adults with CMCD and the aging of this group mean costs will only increase. Chronic disease prevalence and burden has grown rapidly in the past 20 years and highlights the inadequacies of our current health care system. Designed to meet emergency and acute care needs, people who have ongoing diseases or conditions find the system lacking essential qualities such as coordinated care and access to providers and specialists, to name a few. This white paper sets out to establish why it is so important to address the evolving needs of youth and young adults living with CMCD, ages 12 to 30 years, as they transition into adulthood, especially as the nation discusses health care reform more broadly. Addressing health care transition, coordination, continuity and access needs of the 15 million young Americans living with CMCD could not only slow the growth of health care costs, quality health care supports could also assure these young adults are healthy enough to make active contributions to society. Transition and related health care supports are important components of overall health care reform. Several possible strategies might be considered. Youth health care transitions to adult health care could be improved by changes to insurance rules, reimbursement policies and the medical workforce. While much of the health reform debate is focused on ideas such as a creating a public plan, forming insurance exchanges and mandating coverage, two core concepts that appear in proposals offered by those on both sides of the aisle would benefit youth and young adults living with CMCD: 1

6 1. Prioritizing care for the chronically ill 2. Improving coordination of care More specifically, the elements of health care reform proposals that would significantly enhance health care transition include: Offering incentives for coordination, e.g., paying physicians for coordinating care Utilizing a medical home model Enhancing health outcomes through the use of activities such as: Quality reporting Effective case management Care coordination Chronic disease management Medication and care compliance initiatives Encouraging innovative approaches to clinical teaching using models of primary care, such as the patient centered medical home, team management of chronic disease, and interprofessional integrated models of health care that incorporate transitions in health care settings and integration of physical and mental health Collaborating with local primary care providers and state and community based resources to coordinate disease prevention, chronic disease management, transitions between health care providers and settings and case management for patients, including children While these elements in the various approaches to health care reform do address some of the needs of this population, two key issues are being overlooked. First, little information is available about this population s use of health care services and related supports, especially as individuals move from pediatric to adult-oriented providers and facilties. This makes it impossible to project what impact specific health care policy proposals may have on access to and utilization of primary and specialty care services, and how improved care coordination and health care transition services and supports could both save money and enhance patient outcomes. Second, more work needs to be done to make health, education, employment, and independent living services and supports easy to use. While this paper focuses primarily on the medical aspects of the health care system, health includes 2

7 the ability to lead a fulfilling life. Much has been done over the past 30 years to develop services for youth and adults with CMCD. So much, in fact, that more than 200 federal and state programs have been identified. Therefore, system navigation services should be developed and promoted in health care and other settings where individuals with CMCD interact with the various parts of the expansive, but complex social services system. As stated in the 2007 Institute of Medicine The Future of Disability report,...the future of disability in America will depend on how this country prepares for and manages a complex array of demographic, fiscal, medical, technological, and other developments that will unfold in the next several decades. Inaction will lead to individual and societal costs avoidable dependency, diminished quality of life, increased stress on individuals and families, and lost productivity. We now have an opportunity to help ensure that today s youth and young adults with chronic medical conditions and disabilities will have access to the health care transition, system navigation and related supports they need to reach their full potential. 3

8 Background Health care in the United States costs more than $2 trillion a year 1, and a large portion is spent on people with chronic or ongoing disease. The magnitude of the issue becomes clearer when you consider that of the more than 300 million people in the U.S., about 133 million have a chronic condition. 2 Almost one in five, or 8.8 million, American households include at least one child with a chronic medical condition or disability. 3 The number of young people with chronic medical conditions and disabilities (CMCD) has increased over the past four decades to over 10 million youth and 5 million young adults. 4,5,6 Additionally, the frequency of chronic medical conditions increases with age, as seen below in Table 1. Young adults diagnosed with CMCD (ages 18 to 30) are included in the total population of adults with CMCD because the young adult population has not been formally defined or studied. 7 The needs of young adults with CMCD now and as they age are a part of the health care system that is largely uncharted territory. Table 1. Percentage of U.S. with Chronic Medical Conditions and Disabilities by Age Age Percentage Children up to 5 years old 8% Youth years old 8 16% Young adults years old unknown Adults years old 9 45% Although youth and young adults living with CMCD account for a small percentage of individuals under age 18, the costs associated with treating and caring for this population is approximately three times higher than for those without CMCD. 10 In the Medicaid program, children with disabilities make up less than 10% of the children served, but account for nearly 30% of costs. 11 Most importantly, Table 1 shows almost half of the adult population (ages 18 to 64) has a chronic medical condition or disability. According to the Institute of Medicine, the total number of younger adults with disabilities currently exceeds the total number of individuals with disabilities from the population ages 65 and over. 12 Many young adults with childhood conditions that were formally fatal now live with the aftereffects of treatments, such as chemotherapy, secondary health conditions and premature aging. Dr. Roberta Williams, the Chair of Pediatrics at 4

9 the University of Southern California School of Medicine, says because of a lack of preparation, paucity of appropriately trained providers and centers, inadequate insurance coverage, physician/parent/patient attitudes, and cognitive impairment...it is likely that secondary disabilities might accelerate and result in increased costs in later years. 13 The combination of 15 million youth and young adults with CMCD and the aging of this group mean health care costs will only increase. Chronic disease prevalence and burden has grown rapidly in the past 20 years and highlights the inadequacies of our current health care system. Designed to meet emergency and acute care needs, people who have ongoing diseases or conditions find the system lacking essential qualities, such as coordinated care and access to providers and specialists. This white paper sets out to establish why it is important to address the evolving needs of youth and young adults living with CMCD as they transition into adulthood, especially as the nation discusses health care reform more broadly. Addressing health care transition, coordination, and continuity and access needs of youth and young adults with CMCD is important to slow the growth of health care costs and assure these young adults are healthy enough to make active contributions to society. Youth and Young Adults with CMCD Defined The Maternal and Child Health Bureau (MCHB) resides within the U.S. Department of Health and Human Services. Starting as the Child Health Bureau in 1912, then What is it Like? The View from a Young Adult Diagnosed with nephrotic syndrome at the age of 12, Deidra Hall of North Carolina knows first-hand what it is like to transition from youth to adulthood with a chronic medical condition. Deidra received a kidney transplant in 1994 when she was 16 years old. Covered by her parents medical insurance until she was a young adult, Deidra considers herself lucky to have had access to coordinated care and providers who taught her how to manage her disease herself so she could move away from home and attend college. A stay-at-home mom and mother of two, Deidra became uninsured early in 2009 when her husband was laid off. Now, only one firm in her home state of North Carolina will cover her because of the pre-existing medical condition - at $1,600 per month. With her husband out of work, they can t afford the premium, so Deidra is depending on the generosity of her nephrologist, who has agreed to cover the costs of her routine lab tests and office visits. While her condition was well-managed for a time, Deidra recently experienced symptoms of rejection and was hospitalized for 11 days. On the verge of losing her kidney, she explained, I d rather live than worry about how the bills are going to be paid. Deidre is now at home recovering, and the hospital is helping her purchase her medications and is assisting by paying the COBRA premiums on her husband s insurance through the month of her hospitalization. They are also helping her apply for Medicaid, but the future is uncertain. The way the system works makes it difficult for someone like me, explains Deidra. I want to be an entrepreneur. I want to start something new to help other people know you can not only exist, but you can be successful with kidney disease. 5

10 formally established through the Social Security Act in 1935, MCHB oversees programs and services that assure the health of mothers and children across the nation. With a budget of almost $1 trillion annually, the MCHB has a primary responsibility of providing family-centered, community-based, coordinated care for children with special health care needs. In 1998 MCHB established the following definition of children with special health care needs (CSHCN) for the purposes of planning, reporting and systems development:...those (children) who have or are at increased risk for a chronic physical, developmental, behavioral or emotional condition and who also require health and related services of a type or amount beyond that required by children generally. 14 In keeping with the MCHB definition of CSHCN, this paper uses the term youth and young adults with chronic medical conditions and disabilities (CMCD) to mean individuals aged 12 through 30 years who have a chronic physical, developmental, mental, behavioral or emotional condition or disability. Types of Conditions What conditions, diseases and disorders are youth and young adults with CMCD living with? The range is broad and difficult to categorize, in part because many youth and young adults with CMCD have multiple conditions. Almost one-third have two conditions, and one-quarter have three or more conditions. 15 Additionally, young adults with CMCD are at an increased risk for developing secondary mental health problems, such as anxiety, depression and suicide, and are at risk for medical problems due to early aging. 16,17,18 Examples of CMCD 19 Allergies Asthma Attention deficit disorder/attention deficit hyperactivity disorder Autism or autism spectrum disorder Cerebral palsy Chronic kidney disease Congenital heart disease Cystic fibrosis Depression, anxiety, or other mental health problems or conditions Developmental disabilities Diabetes Down syndrome Epilepsy Hearing impaired Hemophilia Intellectual disability Juvenile rheumatoid arthritis Multiple sclerosis Muscular dystrophy Sickle cell disease Spina bifida 6

11 Developmental Disabilities Developmental disabilities (DD) include conditions such as intellectual disability, cerebral palsy and autism, and represent a large subset of conditions that affect youth and young adults with CMCD. The meaning of the term developmental disability has undergone many modifications over the past few decades. Originally, referring to mental retardation, cerebral palsy, epilepsy, and other neurological conditions, the most recent definition includes a functional aspect, focusing on the inability of an individual to perform certain life activities. The Developmental Disabilities Assistance and Bill of Rights Act (as reauthorized in 2000) defines developmental disability as:..a severe chronic disability attributable to a mental and/or physical impairment, manifesting before age 22, likely to continue indefinitely, and resulting from limitations in three of seven life activities; self-care, language, learning, mobility, self-direction, capacity for independent living, and economic self-sufficiency. 20 For children, the definition of developmental disability focuses on the existence of conditions with a high probability of resulting in a developmental delay. 21 Blindness, deafness and other sensory limitations are included in the definition when they occur in conjunction with intellectual impairments. Generally, DD are conditions that originate during childhood and require coordinated services, support or other assistance for an extended period of time or an entire lifetime. A study in the Archives of Pediatric and Adolescent Medicine, estimates the prevalence of children and youth with developmental disabilities to be about 13%. 22 This study also reports that having a developmental disability can affect a child s health and can also have a significant impact on the family. Families with a child with DD face substantial financial and caregiver burdens, and the child has higher rates of emergency room visits, physician office visits and hospitalizations (when compared to children without a DD). The study showed neurodevelopmental disorders such as autism, cerebral palsy and intellectual disability had the greatest impact on health and functioning. These children also had multiple functional limitations, causing them to need more physical, occupational, or speech therapy than children without DD. Types of Care The medical and health care needs of youth and young adults living with CMCD can be intense and long-lasting. Almost all of these young people need prescription medications to manage their disease. 23 More than half need treatment from specialists such as cardiologists, neurologists, and rheumatologists; and specialized 7

12 Examples of Services Needed by Children and Young Adults with CMCD Dental treatment Disposable medical supplies Durable medical equipment Home or in-center dialysis Mental health care Physical, occupational, or speech therapy Prescription drugs Specialty care therapies such as physical, occupational, or speech therapy. Many also require special medical treatments, such as respiratory care or organ transplantation. While a broad range of conditions and diseases affect youth and young adults with CMCD, their prevalence is spread quite evenly across income categories. For young children and the elderly, health care needs are more intense among lower income individuals, but this is not the case for youth with CMCD; disability rates hold steady, even as family income rises. 24 Further, youth and young adults across income and insurance categories have difficulty obtaining all of the health care services they need. Even families with private insurance and higher incomes report that some of the medical and related needs of their adolescent and young adult children with CMCD go unmet. 25 As with all children and adolescents in the U.S., dental treatment and oral health care is the most prevalent unmet health care need among youth and young adults living with CMCD. 26 Transition There are several different types of transitions young adults with CMCD encounter as they move from childhood to adulthood, including transition to post-secondary education or vocational training, transition to work, transition to independent living, and health care transition. The Future of Disability in America, published by The Institute of Medicine in 2007, notes the importance of addressing these multiple issues including health care transition, coordination and continuity of care, and access as essential for the U.S. health care system as a whole. The report defines transition as involving:...a significant change or set of changes in a person s life circumstances during a relatively limited time period rather than over the life span. Transitions may involve changes in social roles (e.g., from a minor to a legal adult), changes in living arrangements (e.g., from the family home to an independent living arrangement or from the family home to an institutional setting), or changes in functioning related to events such as traumatic injuries. Over a life span, a person will typically experience many transitions, with the transition to adult life being one of the most momentous. 27 8

13 Transition can be supported by policies and programs. For example, the Individuals with Disabilities Education Act (IDEA) requires schools to develop an individualized, written transition plan that addresses post-secondary education, vocational training, work, and independent living for all students, age 16 or older, who receive special education services. 28 While IDEA does not require that health care be addressed in school-based transition plans, students with CMCD would clearly benefit from having health related issues addressed in their school-based or other transition plans. 29 The state of their health is primarily what separates students with CMCD from their peers, so these young people must be able to continuously access needed health services and efficiently make the move from pediatric to adult oriented care if they are to reach their full potential. The knowledge, skills and experiences young people need to be the leader in their own health care can, in part, be provided through the schools and should be integrated into IDEA transition plans. That being said, a key characteristic that young people need to acquire to successfully transition to adulthood is self-determination. Self-determination is the drive to determine our own thoughts, feelings, behaviors, and choices over life events. It includes the internal motivation and self-awareness that encourages us to define personal goals based on our interests, preferences, values, and needs. 30 MENTAL HEALTH The mental health needs and issues for children and young adults with CMCD are extremely serious. While beyond the scope of this white paper, it is essential to understand the interplay of medical and mental health for this vulnerable population. Four out of five children with mental health problems do not get evaluated or treated. i Of parents with a child with a known mental health issue, almost half report an unmet need for mental health services. ii Studies show parents don t always discuss mental health issues with the pediatrician, perhaps because coexisting co-morbidities seem more important than addressing mental health issues during office visits. Additionally, many parents perceive mental health services necessary only when the pediatrician recommends them; however, it has been found that pediatricians under-recommend mental health services. Mental health needs are serious and often go unmet in children and youth with CMCD. Routine screening, better coordination of care, increasing the number of specialty pediatricians and home health providers and expanding coverage for a wider range of mental health services are but few of the ways better outcomes could be achieved. i Leatherman S, McCarthy D. Quality of Health Care for Children and Adolescents:A Chartbook. The Commonwealth Fund. April ii Warfield M, Gulley S. Unmet Need and Problems Accessing Specialty Medical and Related Services Among Children with Special Health Care Needs. Maternal and Child Health Journal, Vol. 10, No. 2, March

14 Health Care Transition The result of a national invitational conference in 2001, a consensus statement regarding transition was issued by the American Academy of Pediatrics, the American Academy of Family Practice, and the American College of Physicians- American Society of Internal Medicine. Chairperson, Dr. Robert Blum, sees the statement as setting forth the critical first steps that the medical profession needs to undertake if 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 is to be realized. 31 The consensus statement also calls upon all physicians who treat these individuals to: 1. Understand the rationale for transition from child-oriented to adultoriented health care; 2. Have the knowledge and skills to facilitate that process; and 3. Know if, how, and when transfer of care is indicated. These steps are in full accord with the Healthy People 2010 goal for all young people with ongoing health care needs to receive the services necessary for health care transition. Though children, youth and young adults routinely experience transition issues related to changing health care, the intricacies of their disease combined with the intensive levels of care from both medical providers and support systems including parents, teachers, social workers and others, make health care transition for youngsters living with CMCD fraught with risk and uncertainty. Physicians describe health care transition for the CMCD population as the provision of high-quality, developmentally appropriate health care services that continue uninterrupted as the individual moves from adolescence to adulthood. 32 One of the core goals of this process is to maximize lifelong functioning and potential of the young person. Health providers and researchers describe the health care transition process as having three phases: Preparation for transfer, Transfer, and Integration of the young person into the adult health system. Preparation for transfer refers to training and educating the young person and family so they are prepared for the transfer to the adult system. Training includes, for example, improving the young persons understanding of their CMCD, self- 10

15 determination, self-care skills, and ability to communicate effectively with health care professionals. Self-determination enables the young person to set priorities and to initiate and maintain health behavior change. 33 It is a priority to involve young persons with CMCD actively in the process of transfer and promote their ability to exercise self-determination. Preparation for transfer also refers to work that providers may do regarding referral to an adult provider, planning continuous health insurance, etc. Transfer is an event. In its simplest form, it is the event of leaving pediatric providers and starting with adult providers. Transfer also refers to the exchange of information, for example, medical records and summaries from pediatric to adult providers. Integration of the young person into the adult health system refers to those things that adult providers and facilities might do to orient the new patient to the world of adult medicine, including educating them as to how to negotiate adult systems and making them aware of modifications of standard adult practice that may be made in order to help assure the new patient will continue to seek care from the new adult providers. Orientation can include having a tour of the adult clinic and meeting staff before the first medical appointment. Education about how to navigate adult care might include: How to make appointments, After hours and weekend access to the clinic and providers, How phone calls into the doctor are handled, Types of insurance coverage reimbursed, and the Use of specialty referrals. Accommodations for individuals with CMCD might include having longer appointments, having shorter periods between visits, using parents and/or significant others as a source of medical information, providing additional self-management training, and ensuring the environment of care is acceptable to young adults. In addition to transitioning from one insurance type to another, young adults often find acceptable care difficult to find. 34 Because finding a qualified health professional to address CMCD can be a challenge, some young adults simply continue to see their pediatric specialist. Cases of patients well into their 50s with diseases like cystic fibrosis seeing the pediatrician who first treated them are not unheard of. Transitioning to another physician is either so difficult or so traumatizing, that the young adult, and then the middle-aged adult simply don t move on from their childhood providers. 11

16 Transition from Pediatric to Adult Insurance Coverage Figure 2 shows the dramatic change in insurance coverage that young people experience when they turn 18 years of age. This group as a whole falls off a cliff, so to speak, as programs designed to cover children, such as parent s insurance plans, Medicaid and the State Children s Health Insurance Program (SCHIP) become less available. Figure 2. 30% 25% 20% 15% 10% 5% 0% Percent Uninsured by Age Group Under 18 years of age 18 to 24 years 24 to 34 years 35 to 44 years 45 to 64 years 65 years and older Source: U.S. Census Bureau, Income, Poverty and Health Insurance Coverage in the United States: Issued August, Growing up for many youth or young adults may mean moving away from home, perhaps to go to college, get married, or start a job. Living on their own for the first time, young adults must learn to balance spending and income. Not surprisingly, young adults ages 18 to 29 are one of the largest and fastest-growing segments of the U.S. population without health insurance. 36 In many cases, becoming an adult means the young person is now on their own, working and paying rent or a mortgage. If their employer does not offer health coverage, or the price for insurance is too steep, many people choose to go without a decision much more likely to be made by young adults. In the case of young adults with CMCD, this already difficult decision is exacerbated by a number of issues. First and foremost, by definition, the young person has a pre-existing condition. They may be turned down for health insurance in the private market or asked to pay higher premiums to cover their CMCD. Second, certain medical conditions may be chronic, but not urgent, leading the individual to think 12

17 they can go without health insurance because they aren t sick currently. Third, moving from their parents insurance policy might mean they also have to change physicians. While many of us are faced with such a change if our insurance coverage changes, in the case of a young adult with CMCD, such a change could disrupt a carefully calibrated treatment and care regimen, which has been in place for years. Young adults with CMCD are subject to different types of insurance transition issues: Moving from Medicaid/ SCHIP to private coverage as youth age into adulthood Mini-case: A 22-year-old with rheumatoid arthritis When she was 12-years-old, a patient was seen by a pediatrician who specialized in rheumatic diseases in children. Because of her status as a youngster with what she understood to be an old person s disease, a specialist was in order. But as an adult, she no longer needs special care, and can see a rheumatologist for routine check-ups. In so doing, however, the 22-year-old sits in a waiting room with 70 and 80-year-olds. It is an uncomfortable setting for her, and sometimes she chooses not to go in for her quarterly check-up making a flareup more dangerous if it happens. Moving from private family coverage to private individual coverage Difficulty finding/maintaining academic-sponsored insurance Difficulty finding/maintaining employer-sponsored insurance Moving from Public to Private Insurance Coverage Medicaid is the state/federal program that provides health coverage to low-income people in the U.S. In 2007, 52 million people were served by Medicaid. Medicaid covers more than 31 million children nationally. 37 According to the Kaiser Commission on Medicaid and the Uninsured, 70% of low-income children with disabilities are covered by Medicaid, and 20% of all children with disabilities have Medicaid. 38 Certain programs within Medicaid are specifically designed to assist children with CMCD. The Early Periodic Screening, Diagnostic, and Treatment (EPSDT) component of Medicaid guarantees children will be screened and treated for certain diseases and disorders between the ages of 0 and 18 to 21, depending on how a state defines adult. Through EPSDT children receive routine medical, vision, dental and hearing screenings. They also receive comprehensive physical health exams and appropriate vaccinations. 39 The original intent of the EPSDT component of Medicaid gives a sense of the foresight and importance of the policy. Enacted in 1967, the program was created, 13

18 in part, to address the issue of military draftees being rejected due to untreated childhood illnesses. Specifically, the EPSDT provision states that services must be provided to correct or ameliorate defects and physical and mental illnesses and conditions. This conception of medical necessity, rather than requiring services only if they improve or eliminate a condition, requires services needed to stabilize conditions or maintain function. For children with disabilities and chronic illnesses, for whom medical services are not likely to correct or cure their conditions, these kinds of services can improve the chances of leading fuller and more independent lives. 40 If a child is diagnosed as having a medical condition during an EPSDT screening, the Medicaid program is required to pay for all services that are medically necessary to ameliorate that condition, even if the amount, duration or scope of these services exceed those included in the Medicaid state plan. Certain diseases and disorders are more prevalent, such as oral disease and tooth decay (the most common disease among Medicaid eligible children). 41 The Medicaid/EPSDT program is considered by advocates to be a critical component of the health care safety net. 42 It creates a bridge to access care for many youth and young adults who might not have had any other way to obtain health care services. The program is further extended when states choose not to create a separate SCHIP program, but instead extend Medicaid to SCHIP eligible children. If the state chooses expansion, the complete Medicaid benefits package must be made available to SCHIP recipients, including all the services covered by EPSDT. Although Medicaid is generally considered to improve access to care for children and youth, a significant health care transition issue occurs when those with CMCD reach adulthood. Since Medicaid only covers children until the age of 18 to 21 years of age, and SCHIP only covers youth up to their 19th birthday, young adults with CMCD are often left without any health insurance, which severely limits their access to health services. The main exception is if they qualify for disability by virtue of income or a determination of long-term impairment and can become eligible for Medicaid again, or Medicare. Medicaid eligibility is generally determined using financial (income and resources) criteria. Federal law sets minimum requirements, but states may set higher guidelines. Generally, children under six years of age whose family income is at or below 133% of poverty and children ages 6 to 19 with a family income up to 100% of poverty are eligible for benefits. In most states, those receiving Supplemental Security Income (SSI) are eligible for Medicaid. States are also authorized to 14

19 provide benefits to other optional eligibility groups and the medically needy those whose income exceeds the financial guidelines but still need assistance with health insurance if they choose. States can also provide Medicaid benefits to full-time students under age However, financial eligibility criteria for Medicaid for adults are much more restrictive than the criteria for children. Childless adults, for example, cannot be covered under the federal Medicaid program rules. If a state wants to provide Medicaid coverage to an adult who is not a parent, they must do so using state dollars only, and must obtain a Medicaid waiver to do so. Further, Medicaid beneficiaries over age 21 are not covered by EPSDT protections, and the type, amount, duration and scope of services they receive as adults can be significantly less than that which they received as a child. Moving from Private Family Coverage to Private Individual Coverage While Medicaid does have some coverage limitations, the public health insurance program provides families with a greater level of financial protection than do most private insurance plans. While about 15% of families with youth or young adults with CMCD who have public insurance spend more than 10% of their family income on health costs, about 20% of families with private insurance have a financial burden exceeding 10% of their income. 44 As would be expected, everrising health costs in the U.S. are putting an increasing financial burden on families supporting youth or young adults with CMCD. Difficulty finding/maintaining academic-sponsored insurance A comprehensive review of college health insurance benefits conducted by the General Accountability Office in 2008 showed that, in 2006: 80% of students ages 18 to 23 enrolled in college had health coverage Almost 70% had coverage from an employer-sponsored plan About 7% were covered by Medicaid or another public program About 7% were covered by a student or other private plan. 45 Notably, nearly 20% of college-enrolled students were uninsured. Estimates show these uninsured students generated between $120 million and $255 million in uncompensated care from physician and emergency room visits. 46 Further, the greatest proportion of uninsured was part-time students. A number of colleges do not make their student health insurance available to students who are not enrolled full-time. In the case of young adults living with CMCD, carrying a part-time class 15

20 What is it Like? The View from a Parent In many ways a story of successful transition, the parent of a 26-year-old from Maryland is proud her son lives in his own apartment and has held both part-time and full-time jobs. I wasn t sure he was ready, she says, but with the help of state-sponsored independence services, they found an apartment near his parents house. But the complicated and often frustrating process of navigating the various programs and help available to her son has not been easy. Although eligible for Medicaid, her son was covered through her company plan for years before he got a job that offered insurance. Since Medicaid is the payer of last resort, she and her husband didn t have to interact with the government-sponsored coverage until recently when their son lost his job. Figuring out which providers take Medicaid, what medications are covered and how to transition her son from his pediatric dental office has been a challenge. Additionally, a weekly visit to her son s long-time therapist is not covered in full, so she and her husband have been covering the difference out-ofpocket. Still, this mom is more concerned about health issues in addition to her son s chronic medical condition. Healthy living is a problem, this concerned mother explains. He has poor eating habits, is overweight and pre-diabetic. While her son does have a chronic medical condition, it isn t the medical problems that are the most difficult to manage. He is a typical young adult, which is a problem, too. load for health reasons could have an educational impact, but it could also affect health coverage. Finally, the coverage offered by academicsponsored plans is not as generous as that offered by parent s employer-sponsored coverage. The GAO found that 66% of employer sponsored plans had a maximum lifetime benefit of $5 million, and almost 100% had a maximum benefit of $2 million. However, the typical plan sponsored by an academic institution had a maximum lifetime benefit of $500, Young adults living with CMCD may not feel that a policy that limits total benefits to $500,000 will assure access to the health care services they may need. Difficulty finding/maintaining employersponsored insurance Some young adults with CMCD may not be able to go to college and will instead seek employment. Because of their health condition or disability and limited stamina, many can only work part-time. This puts these young adults at risk of being uninsured because many employers do not offer health insurance benefits to part-time employees. Additionally, based on the state of the overall job market, young adults who could work full-time sometimes have no choice but to take part-time work, or low wage or temporary positions that do not provide health benefits. Access to parents insurance can be limited as young people who work part-time may not be eligible for coverage under their parents insurance. Nearly 60% of employers who offer family health care coverage do not extend 16

21 coverage to dependent young adults over the age 18 or 19 if they are not students. 48 To ease the transition to new insurance coverage options and ensure that an abrupt cutoff of insurance benefits does not have negative effects on the health status of young adults, many states have passed legislation that raises the age of dependency. These laws allow a young adult to remain covered by their parent s private health insurance plan until they reach the new upper age limit. According to the National Conference of State Legislatures, as of December 2008, 31 states had passed laws raising the age to determine health insurance dependent status. 49 While New Jersey increased the age to 30, most states have increased the age to 24 or 25. With the exception of four states, these new laws apply to both non-students and students. However, the laws only apply to plans covered under state insurance regulations, and do not apply to employers who are self-insured, which accounts for a large portion of the insured. Coordination Care coordination is an essential component of case management, as many youth and young adults with CMCD and their families must learn to manage multiple health care services that are often provided across different settings. Proper care coordination may help reduce the financial impact families incur due to medical expenses and missed work. These financial burdens are outlined below in Figure 3. Figure 3. Financial Impact on Families Youth with CMCD whose families Percentage Pay $1,000 or more out of pocket in medical expenses per 20% year for the child Experience financial problems 18% Spend 11 or more hours per week providing or coordinating 10% the child s health care Must cut back or stop working 24% Achieving optimal care coordination should be an attainable goal, especially since the efficiencies coordination produce could potentially translate into cost savings. A groundbreaking study on the costs and outcomes associated with coordination of care in physician offices published in Pediatrics in 2008 showed improvements in the management and monitoring of patients with CMCD can generate significant 17

22 cost savings at the practice level and for the U.S. health care delivery system in general. Using a measurement tool to assess the value of daily care coordination activities performed by physicians, nurses and other practice personnel, researchers found a number of care coordination activities prevented unnecessary service use. Almost one-third of study participants indicated care coordination encounters prevented a level of resource use beyond primary care. Of these, 84% led to prevention of either an emergency department visit or an episodic, acute visit to the office for the family. 51 Besides the direct cost savings attributable to preventing emergency department visits, care coordination can also reduce the amount of time missed from work or school for youth with CMCD and their families. Employers might also experience a benefit because care coordination can reduce the need for face-to-face physician office visits, meaning employees could spend less time away from work. Care Coordination Defined The American Academy of Pediatrics (AAP) defines care coordination as: a process that links children and youth with special health care needs and their families with appropriate services and resources in a coordinated effort to achieve good health. 52 In a physician office setting, care coordination requires managing multiple details, including, but not limited to: Assessing and identifying patient s needs; Being knowledgeable of existing medical and non-medical resources; and Monitoring and following up with patients closely and frequently. All care coordination activities require some amount of time per patient in addition to time spent on direct treatment. As might be imagined, the additional time correlates closely with the patient s level of medical complexity. Reimbursement for services depends on whether or not the task was performed by a credentialed, licensed health care provider or office personnel

23 The Medical Home The concept of the medical home was originally introduced in 1967 by the American Academy of Pediatrics (AAP) as a central location for archiving a child s medical record. 54 The AAP expanded the concept of the medical home in 2002 to a model of delivering primary care that is accessible, continuous, comprehensive, family-centered, coordinated, compassionate, and culturally effective care. 55 This sort of support is essential to the care and wellbeing of youth and young adults living with CMCD and their families. In March 2007, the American College of Physicians, American Academy of Family Physicians, American Osteopathic Association and the AAP released a joint statement on the most critical principles of the medical home. The following selected guiding principles emphasize coordinated, high-quality care, and its value to patients, their families and the health care system. 56 Joint Principles of the Patient-Centered Medical Home Personal physician each patient has an ongoing relationship with a personal physician trained to provide first contact, continuous and comprehensive care. Physician directed medical practice the personal physician leads a team of individuals at the practice level who collectively take responsibility for the ongoing care of patients. Whole person orientation the personal physician is responsible for providing for all the patient s health care needs or taking responsibility for appropriately arranging care with other qualified professionals. This includes care for all stages of life; acute care; chronic care; preventive services; and end of life care. Care is coordinated and/or integrated across all elements of the complex health care system (e.g., subspecialty care, hospitals, home health agencies, nursing homes) and the patient s community (e.g., family, public and private community-based services). Care is facilitated by registries, information technology, health information exchange and other means to assure that patients get the indicated care when and where they need and want it in a culturally and linguistically appropriate manner. Enhanced access to care is available through systems such as open scheduling, expanded hours and new options for communication between patients, their personal physician, and practice staff. Payment appropriately recognizes the added value provided to patients who have a patient-centered medical home. Excerpted from: Joint Principles of the Patient-Centered Medical Home. March There is a consensus among health care policy experts and physicians that a team approach to patient care will produce improvements in health outcomes and significant cost savings. However, care coordination within the medical home is difficult to achieve in an efficient manner. Currently, many models of care 19

24 What is it Like? The View from a Physician Specialist A pediatric pulmonologist by training, Dr. Greg Sawicki is a cystic fibrosis (CF) specialist and helps run one of the country s preeminent CF centers, a combination pediatric/adult facility with more than 500 patients. In the 1980 s, most patients diagnosed with CF died in their late teens, or early 20 s, explains Dr. Sawicki. Now, many patients are living into their 30 s, 40 s, and beyond. This change in lifespan has required a commensurate change in the practice of medicine and the coordination of care for patients transitioning from childhood to adulthood. Training providers differently and providing a patient appropriate treatment atmosphere are but a few of the changes practitioners and facilities must make to better serve youth with CMCD. Helping patients understand why they are moving to adult care and changing the role of parents in medical treatment decisions are also important. We do more now to empower the young adult when it comes to their disease, says Dr. Sawicki. When we first started to transition patients to adult care some felt slighted, but now most see it as fostering their growth. We are at a critical juncture, not only structurally, but also from a patient point-ofview, says Dr. Sawicki. Providing education to patients and their families to help overcome barriers to health and health care is essential. Young adulthood is typically a time of high risk behavior. We know that without solid self-management skills patients do poorly long-term. coordination are being explored. Families of youth and young adults with CMCD recognize this difficulty, reporting in a study on families perceptions that although their children s health care professionals have the necessary skills to provide for their children, care coordination often is not provided through their primary care physician s office. Ideally, families seek a medical home that will: Develop a written summary of important information; Develop a customized action plan; Provide a collaborative, familycentered approach to care; and Utilize a clear process for the integration and coordination of multiple services and provide care-coordination. 58 Reimbursement Issues for Care Coordination Activities Provider reimbursement for care coordination activities is a complex issue. First, no standard definition of what constitutes care coordination in the physician office setting exists. Care coordination activities must be precisely described in order to improve the level of care coordination provided to families. Care coordination includes planning for personnel staffing, determining the cost of care coordination activities with the goal of reimbursement and assessment of the outcomes of care coordination. Second, the complexities of each patient s care 20