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PPC Brief: Young Invisibles


...Like their healthy peers, Young Invisibles are struggling to figure out how to live on their own, get the right job and find their lifelong partner. But given their chronic conditions those goals are much harder to achieve. Young Invisibles have a prerequisite that needs to be met first: they must find a medical team that provides quality chronic condition management.


This task is daunting, because the adult health care system is not designed to provide care for childhood-onset conditions. Ideally, these patients would transition from pediatric patient-centered medical homes (PCMH) to adult PCMH. But typically, most adult providers, whether or not they are practicing in a PCMH, do not have experience with these conditions, nor do adult PCMH provide appropriate wrap-around services since most adult healthcare systems are focused on ill, elderly adults. Furthermore, Young Invisibles have more difficulty accessing adequate and consistent health insurance because of changes in insurance eligibilities and coverages at age 21. Pediatric and adult health care systems are culturally distinct, where pediatric care is family- centered and developmentally appropriate, while adult care presumes adult independence and decision-making. Young Invisibles need to be educated on how to manage their health and navigate the health care system.


The adult medical home should provide access to subspecialists with relevant expertise and in addition, the mental and reproductive health resources that are appropriate for their specific health condition.


Young Invisibles also have unique unmet psychosocial needs. Usually they hide their conditions for fear of being different and being avoided socially or by employers. One of the hidden problems they face is guilt; since they are young and appear healthy, educators, employers and society presume they are avoiding work and responsibilities when they are sick. Young Invisibles suffer from social isolation, because they cannot be honest about their health or keep up with social commitments. These young people do not have a voice.


The medical and social service systems are not set up to ensure this population’s health, well- being, or success in education, work, independent living, financial stability and social life. Young Invisibles are connected to the world by their cellphones. Solutions to improve their health and social needs can be enhanced by technology, e.g., universal access to a virtual medical home integrated with social services and will need to incorporate pay for performance measures.


Without the designation as a national public health population priority, this population will not be able to avail itself of grants, research, programs, services and supports from both public and private entities...

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