1 Education Healthcare Transition A Law and Policy Factsheet for Teachers What is Transition? And what does it mean for youth with special healthcare needs? Transition is a gradual progression where children with special healthcare needs, shift from a primarily child centered, structured and supported student role to a more adult role, with increasing primary responsibilities (Lollar, 2010). Youth with special healthcare needs are [t]hose who have or are at increased risk from 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 (Cooley & Sagerman, 2011). Technically, all children transition from youth to adulthood, but children with special healthcare needs have to learn how to make the transition while also learning how to manage and advocate for their special healthcare needs in continuing education, employment, housing, community and adult healthcare settings (Kochlar-Bryant, Bassett & Webb, 2009; Sitlington, Neubert & Clark, 2010). Transitioning youth with special healthcare needs, which include chronic health conditions, disabilities and other special needs, have made progress in gaining access to employment and postsecondary education opportunities (Kochlar-Bryant, Bassett & Webb, 2009). This is likely due in part to expansions in federal and state laws that concern youth and young adults with special healthcare needs and growing public perception that people with special healthcare needs have the capability to succeed in their academic and employment endeavors (Kochlar-Bryant, Bassett & Webb, 2009). However, despite this initial progress the number of transitioning youth with special healthcare needs who complete their degree programs is not keeping pace with their nondisabled peers and they tend to have lower rates of employment than their nondisabled peers (Kochlar-Bryant, Bassett & Webb, 2009, Lollar, 2010). What is Education Healthcare Transition? Education Healthcare Transition is a collaborative process that involves at least 3 major fields: education, healthcare, law, along with several subfields such as employment, housing and transportation. [It] may encompass a variety of activities, including learning to make one s own decisions, further education, job training, and moving from the family home. A crucial element of successful transition for all young people, but especially those with health issues or disabilities, is gaining the knowledge and skills they need to sustain their health and wellness. Good health is the foundation for success in the community and on the job. The transition process must support these students to learn about and become responsible for their health so they may become as independent as possible (Adolescent Health Transition Project, 2011, p. 1). A major goal of Education Healthcare Transitions is to build self-advocacy skills in transitioning youth. Self-advocacy skills help people to effectively communicate their interests, needs and rights. Encouraging independent goals will involve students knowing how to advocate for themselves and their educational and healthcare needs. So what s the problem? Unfortunately, the current transition process for youth with special healthcare needs is largely fragmented. However, the three main components of Education Healthcare Transition, education, healthcare and law, have many overlapping goals, so more interaction between these transition partners may more effectively streamline the transition process for youth with special healthcare needs. Let s look at these three components in more detail.
2 What are the goals of Education Transition? The broad goal of education transition is to prepare youth for employment, post-secondary education, and adult independence (Kochlar-Bryant, Bassett & Webb, 2009, p. 2). Education transition is individualized, outcome oriented, and includes instructional methods and services, community and vocational experiences, the development of adult oriented objectives, and the acquisition of daily living skills (Lollar, 2010). What are the goals of Healthcare Transition? The goal [of healthcare transition] is to maximize lifelong functioning and potential through the provision of high-quality, developmentally appropriate health care services that continue uninterrupted as the individual moves from adolescence to adulthood. It is patient centered, and its cornerstones are flexibility, responsiveness, continuity, comprehensiveness, and coordination (American Academy of Pediatrics, 2002, p. 1304). Adolescents with chronic disease (ACD) must develop independent disease self-management and learn to communicate effectively with their health care team to transition from pediatric to adult-oriented health care systems (Huang et al., 2014, p. 1639). How is Law involved with Education Healthcare Transitions? Federal and state education transition focused laws have a general intent to provide a quality education to students and to prepare students for a competitive workforce (Sitlington, Neubert & Clark, 2010, p. 2). With regard to healthcare transitions most of the relevant laws are related to privacy concerns. Gaining knowledge of the major laws and policies involved in their transition is an essential step in preparing youth with special healthcare needs for their integration into adult society EDUCATION LAWS IDEA/IDEIA The Individuals with Disabilities Education Improvement Act (2004) (IDEIA) requires that children in public school have transitional aspects included in their Individual Education Program (IEP) by the time they are 16 (Sitlington, Neubert & Clark, 2010). The transitional aspects are individualized for each student and may include life skills, academic preparation for post-secondary education, vocational preparation for employment and community involvement (Sitlington, Neubert & Clark, 2010). The law requires that caretakers and students be involved in all aspects of transition planning and decision making. The IEP must be updated annually at a minimum, and the IEP team is required to revise the IEP if the student is not making expected progress toward the IEPs annual goals. IDEA/IDEIA Shortcomings IDEA/IDEIA protections end at the secondary level/age 21. So while it will begin the transition process it has no follow-up or assurances built in for post-secondary achievements. Federal funding was supposed to be 40% of states actual costs, however it has remained between 7% and 19% (Yell, 2012).
3 Because the Transitional IEP is different for each child the ways schools follow the transition mandate is variable (Sitlington, Neubert & Clark, 2010). The law limits coverage to specific disabilities that are defined under the law and that affect educational achievement There is a disconnect between healthcare and education. If the IEP team does not have a complete picture of the student s special healthcare need, medications and treatment it is difficult to create an effective transitional plan (Lollar, 2010). Section 504 (of the Rehabilitation Act of 1973) Section 504 is primarily a civil rights law and has an emphasis on protecting individuals from discrimination due to their disability. The law s protections cover any physical or mental impairment that substantially limits major life activities. Schools create 504 plans to provide accommodations to students who are protected by the law. The protections extend beyond secondary education into post-secondary education and employment (Lollar, 2010; Pearson, 2013). Though there is no requirement for cooperation or coordination between transitional actors such as healthcare and education, if transitioning youth are aware of the protections under this law they can help to ensure that they are not subject to discrimination in things like employment, education, housing, etc. Section 504 Shortcomings Section 504 is not federally funded, and schools are required to provide accommodations at their own cost. As a result, the type or quality of accommodations and services may vary significantly across settings. The law does not directly address transitional planning so the extent to which an individual with a 504 plan receives transitional planning will vary. The law limits coverage to specific disabilities that are defined under the law and that affect educational achievement There is a disconnect between healthcare and education. If the 504 team does not have a complete picture of the student s special healthcare need, medications and treatment it is difficult to create an effective transitional plan (Lollar, 2010). Family Educational Rights and Privacy Act of 1974 (FERPA)- Also known as the Buckley Amendment FERPA is a federal law that defines who is allowed to have access to students records Parents/caregivers are guaranteed the right to inspect and review their child s educational records There are procedures for challenging the accuracy of student records Requires that student records remain confidential unless parents/caregivers give consent to release the information When the student reaches the age of majority all rights transfer to the student and any prior consents to release information will be invalid from that point on. FERPA s Shortcomings FERPA s privacy requirements can impede open communication between educators and health care providers.
4 If such communication is limited, it can impact the quality of transition planning that occurs for youth with special health care needs. Healthcare Laws Health Insurance Portability and Accountability Act (HIPPA) HIPPA is a federal law that applies to all people regardless of disability status. It provides structure regarding the sharing of personal health information that can guide the collaboration between professionals transitioning a patient from pediatric to adult care. Under HIPPA medical disclosure requires written consent from an individual (or their legal representative), formalizes collaborations between professionals, and ensures that only necessary/requested medical information is shared. HIPPA s Shortcomings HIPPA s privacy requirements can impede open communication between pediatric and adult care providers. This can result in adult providers having incomplete information regarding a patient s medical history and treatment. In the absence of such critical information, providers may not make fully-informed treatment decisions. Additionally, these privacy requirements can impede open communication between educators and health care providers. If such communication is limited, it can impact the quality of transition planning that occurs for youth with special health care needs. This may result in the development of IEP/504 plans that inadequately address the youth s needs or it may result in two separate, unintegrated transition plans (an education transition plan and a separate healthcare transition plan) which can be overwhelming for the transitioning individual. Encumbered communication may delay the timely receipt of needed educational services/accommodations. The Affordable Care Act (ACA) - Also known as Obamacare Youth remain on their caregivers insurance until age 26. Medicaid coverage has expanded (in some states) and it provides for more prescription drug coverage. Emergency care is covered. Some preventative care may be is covered as part of all plans and there is no additional charge. You can t be denied cover because you have a preexisting condition. Patients have a choice of doctors within network. There is a central website (http://www.hhs.gov/healthcare/) that is fairly easy to navigate, and which contains up to date insurance information which could help healthcare workers, patients and their caregivers ensure that the patients have the type of coverage needed to properly care for their health needs ACA Shortcomings Health insurance, in general, is complex and will require transitioning youth to be fully aware of their actual and likely treatment needs when seeking coverage.
5 The law was created during a Democratic Administration, in a tenuous political climate, thus it is subject to repeal or amendment. The law is complex, and because it is subject to change, everyone involved in the transitional process will need to learn to remain aware what it does and does not cover over time. These legal, educational, healthcare related goals are interconnected in their individualized (youth) focus and their recognition that transition is multifaceted but that the end goal is successful entrance into adult society. Additional Laws to Consider Americans with Disabilities Act (ADA) Medicaid Supplemental Security Income (SSI) Rehabilitation Act of 1973 (Vocational Rehabilitation) Section 8 Housing Vouchers Helpful Websites National Health Care Transition Center: http://www.gottransition.org/ National Center on Secondary Education and Transition: http://www.ncset.org/ National Alliance for Secondary Education and Transition: http://nasetalliance.org/ References American Academy of Pediatrics, American Academy of Family Physicians and American College of Physicians-American Society of Internal Medicine. (2002). A consensus statement on health care transitions for young adults with special health care needs. Pediatrics, 110(3), 1304-1306. Cooley, W. C. and Sagerman, P. J. (2011). Clinical report- Supporting the healthcare transition from adolescence to adulthood in the medical home. Pediatrics, 128(1), 182-200. Huang, J. S., Terrones, L., Tompane, T., Dillon, L., Pian, M., Gottschalk, M., Norman, G. J. and Bartholomew, L. K. (2014). Preparing adolescents with chronic disease for transition to adult care: A technology program. Pediatrics. 133(6), 1639-1646. Kochlar-Bryant, C., Bassett, D. and Webb, K. (2009). Transition to postsecondary education for students with disabilities. Thousand Oaks, CA: Sage/Corwin Press. Lollar, D. (Ed). (2010). Launching into adulthood. An integrated response to support transition of youth with chronic health conditions and disabilities. Baltimore, MD: Paul H. Brooks Publishing Co. Sitlington, P. L., Neubert, D. A. and Clark, G. M. (2010). Transition education and services for students with disabilities. Upper Saddle River, NJ: Pearson Education, Inc. Yell, M. (2012). The law and special education. (3rd Edition) Upper Saddle River, NJ: Pearson Education, Inc.
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