2.2: Supporting Young Adults, Ages 18–21, Transferring From Pediatric Care to Adult Care

Below are important distinctions related to health care accommodations for young adults in school prior to postsecondary education, and young adults in employment and postsecondary education.

18- to 21-Year-Old Young Adult in School (Prior to Postsecondary Education)

• Young adults should be enrolled in family/caregiver’s medical insurance or Medicaid (uninsured, Children’s Health Insurance Program [CHIP]).
• A supported decision-making agreement form, from the state disability rights website, should be completed if appropriate. See sample for Illinois.
• IEP should include goals and objectives related to independent living skills for health care and self-determination. 
• IEP should include instructions on how to:
  
  • Find a physician
  • Make medical appointments
  • Explain health needs
  • Manage medical information, including insurance
  • Make health care decisions
  • Get a prescription filled 
  • Find immediate support when in a health crisis 
• The school nurse will assist with medical needs, while special education staff will assist with toileting support and transfers from wheelchair to desk, chair, or bed.
• Not all special education curricula include sexual/reproductive function and safety education. The curriculum is also unlikely to address the needs specific to individuals with physical and intellectual disabilities. It is up to the families and clinicians to provide this education.

18- to 21-Year-Old Young Adult in Employment or Postsecondary Education 

• Young adults should be enrolled in family/caregiver’s insurance, employer’s insurance, insurance with the institution of higher education, or Medicaid.
• The student and family/caregiver must contact the Office for Students with Disabilities and share test results from high school and IEP and possibly obtain additional or up-to-date testing, as indicated.
• The medical clinician maintains the medical care plan. Most institutions of higher education and employers do not formally support health care needs.
• Clinicians should be aware that for young adults in employment or postsecondary education, there is likely no continued instruction or support offered on how to manage and participate in one’s own health care unless it is conducted by the clinician themselves.
• A supported decision-making agreement form, from the state disability rights website, should be completed if appropriate. See sample for Illinois.
• Most employers may not assist with medical needs, toileting, transfers from wheelchairs to an alternate setting, and so forth. In a few cases, some may have a medical clinic that may provide assistance pertaining to illness and injury.
• Similarly, most institutions of higher education do not assist with medical needs, toileting, transfers from wheelchairs to an alternate setting, and so forth. Some institutions of higher learning may have a medical clinic, which may provide assistance pertaining to illness, injury, and health insurance for their students. They do not administer medication, or assist with toileting, and other relevant care needs for individuals with SB.
• A letter of medical necessity may also be required for work accommodations (eg, requesting additional time for bathroom breaks).
• For individuals enrolled in higher education who require support, such as from a personal care attendant, the student’s care team should work with the student and appropriate agencies to identify the funding source. Reach out to the state Health and Human Services Commission or work through the Medicaid Managed Care Organization coordinator. Some private insurance may cover the cost of a personal care attendant or contact the state disability rights office to obtain information. If the individual requires support, the physician may be asked to write a letter of medical necessity for school accommodations (eg, requesting an individual dorm room with a bathroom for bowel/bladder routines). The letter should be given to the college’s office of disability services.
• In some states, college students can receive funding for personal care attendants. Specific guidelines must be followed related to finding, hiring, and managing personal care services. To find out if a state provides personal care support, the young adult should contact disability services at the college and/or the state’s vocational rehabilitation services. The clinician is encouraged to support the young adult through this process, as needed.

Young adults who remain in public school on an IEP under special education services have goals and objectives designed to support the transition from school to adult life. For a young adult on an IEP with health care needs, collaborative goals that support the treatment provided by the clinician, teach independent living skills to transition from pediatric to adult care, and teach self-determination and self-advocacy skills are appropriate and beneficial. Below are examples of independent living skills related to health care. Young adults, parents and guardians, and/or clinicians can provide input regarding goals to the IEP committee with permission from young adults.

• Got Transition Health Care Transition Quiz
• Got Transition Sample Transition Readiness Assessment for Youth
• Transition Readiness Assessment Questionnaire-Spina Bifida (TRAQ-SB)
• Illinois Transition Checklist for Teens
• Brigance Transition Skills Inventory -2

Navigating the health care system can be daunting for an adult, and if complicated by language and/or cultural differences, it can be especially challenging. According to the PACER Center at the University of Kansas, research indicates that students with disabilities who are from culturally and linguistically diverse backgrounds do not always fare well when it comes to major transition outcomes and suggests that these outcomes may be more than just disability-related (PACER Center, 2017). Students with special health care needs should have access to information and resources from personnel who have knowledge of the wide range of needs that are tailored to all children/families in the setting of health care transition planning. According to the PACER Center, barriers for students, families, and clinicians may include:

• Lack of understanding by families and schools of each other’s cultures
• Language differences 
• Stereotypical biases on both sides
• Generational differences

Students and families with language and cultural differences may benefit from the following (adapted from the PACER Center):

• More support to understand the steps, phases, and goals of the transition process
• Additional explanation of the phases of the transition process
• Additional explanation of the skills the student may need to seek information
• Access to a translator and translated resources
• Help accessing new opportunities, networks, and resources

Additional ideas for schools and clinicians (adapted from the PACER Center):

• Develop a plan that encourages and increases knowledge, sensitivity, and skills about culturally and linguistically diverse youth and their families.
• Promote cross-cultural awareness, competency, and responsiveness.
• Keep an open mind to potential cultural differences and perceptions when it comes to family, home, school, and community.
• Take the necessary time to build trust, rapport, and credibility to address the fears and concerns of the young adult and family.

To participate in the management of their own health care, young adults must be able to communicate with clinicians. For young adults transferring from pediatric care to adult care, communication with clinicians may be a new experience. Barriers to communication may be the lack of health care understanding or limited English proficiency. Moreover, young adults may also demonstrate cognitive challenges in the areas of attention, executive functions, and inference-making skills, all of which may complicate communication with clinicians. Examples include:

• Lack of understanding about what the clinician is saying regarding a young adult’s medical care
• Inability to assimilate new information quickly or process information appropriately to provide the correct answer to a question
• Lack of organizational skills

Clinicians should check frequently with the young adult to determine the degree to which they understand what is being communicated. 

More than 60 million people live in rural areas in the United States, and nearly 25% of the rural population younger than 65 years is covered by Medicaid (National Center for Health Statistics, 2018; Medicaid and CHIP Payment and Access Commission, 2021). To ensure appropriate and continuous medical care from the pediatric to adult health care system, it is important for young adults and families to be aware of additional factors that may need to be taken into consideration in a rural health care setting.