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School and Work

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Although routine health maintenance and stable graft function are important outcomes of long-term transplant care, it is essential to assess school progress, career planning, vocational training, and employment for a comprehensive understanding of the patient’s long-term psychosocial outcomes.  This should be part of the pediatric and adult providers’ routine assessment with an appreciation for how acute medical events, frequent hospitalizations, the burden of daily care, psychosocial concerns, and intellectual disability can impact school attendance and performance, vocational goals, and future employment. 

The multidisciplinary transplant team can be helpful in advising school counselors and staff about additional effects of the AYA’s transplant health on pre-existing cognitive and developmental disabilities.  Based on routine assessments, recommendations for IEPs and 504 plans can be submitted to the patient’s school counselor, in collaboration with parents, to advocate for educational support.  Additionally, team members should provide information to the school’s intervention specialist and nurse about the AYA’s transplant health and routine transplant care so they understand how they can best attend and engage in school. 

Educational accommodations

  • Absences: Transplant recipients may have frequent or sustained absences due to illness, hospital admissions, and appointments. These should not be counted as absences and should be excused with appropriate documentation from the healthcare provider.  The transplant team can help the patient and family by verifying appointments and admission dates, providing medical updates, and confirming excusals for medical appointments.
  • Allowances: The AYA should be permitted to reschedule tests and make up assignments without penalty while recovering from an illness, procedure, or surgery.
  • Home-bound schooling: Home-bound education may be arranged if the AYA cannot participate in the classroom due to a lengthy illness or recovery.      This may also occur when there is a high incidence of communicable infections in the school or community such as influenza or COVID, or a communicable disease that is of greater risk for transplant recipients (measles, varicella). 

Special Education Services 

These services are provided under the Individuals with Disabilities Education Act (IDEA).

  • Individualized Education Plan (IEP): This educational plan provides specialized services and instruction for children and adolescents while enrolled in public schools. By law, private schools do not have to provide IEPs although they often offer these programs.
    • IEPs are created by an educational team and may include input from the medical team, particularly social work and psychology.
    • IEPs set educational and functional goals for each child and outline a plan of how goals will be met.
    • To be eligible for an IEP, a child must have one of the 13 disabilities listed under IDEA law in addition to a disability that impacts the child’s educational performance and/or their ability to learn and benefit from the general education curriculum.
  • 504 Plans: This service originated from the Rehabilitation Act of 1973, the Americans with Disabilities Act of 1990, and the 2008 amendment to Section 504.
    • Section 504 provides a broader definition of disability than IDEA.
    • A child is eligible for a 504 plan if they have any disability, which includes having a chronic medical condition such organ transplantation, that affects the child’s ability to learn in a general education classroom.
    • 504 Plans are similar to IEPs in that their goals change over time to meet the needs of the AYA.

Educational Strategies and Support 

  • The adolescent transplant recipient should have a brief (three-sentence) explanation of their medical condition that they can present to their teachers, friends, and peers. Child life specialists, psychologists, advanced practice providers, and social workers can help the AYA develop an explanation that is understandable and meaningful to them.
  • Encourage patient and family advocacy.  Guide them in asking their school system for additional support services and resources if they are struggling.
  • Refer patients for a neuropsychological evaluation through the medical center as needed. These comprehensive evaluations help characterize a child’s profile of strengths and weaknesses, and can provide tailored recommendations to the school district.
  • Keep track of your patient’s progress in school. If they are having difficulty meeting grade-level expectations, consider a referral for additional testing or encourage them to contact the school district.
  • Contact the patient’s school about additional medical, learning, or emotional support services that would help them succeed to the best of their ability.
  • Engage the AYA in a discussion about what they would like to do in the future.  Help them think about their interests and goals by identifying their strengths and interests, how they can pursue these interests, and accessing resources and supports needed to achieve their goals. 

Promote self-advocacy skills through communicating directly with the AYA, encouraging them to ask questions, and praising them for working through issues independently.  Completing the Self-Advocacy assessment with them is a helpful step to understanding their abilities.  

Hospital-based Schooling

For some patients, hospital-based schooling may be needed for the short-term during periods of extended hospitalization. Enrollment usually requires a referral from the medical team to the hospital-based school program and collaboration with the patient’s local school. Hospital-based teachers: 

  • provide instruction at the bedside for those who have extended hospital stays
  • are licensed teachers for K through 12, and certified in various subjects and special education
  • work closely with their patients’ local teachers and hospital social workers
  • maintain curriculum continuity with the local school district
  • develop and maintain IEPs and 504 plans
  • arrange for homebound instruction upon discharge
  • help students transition into the local classroom when they have returned home and are medically stable 

Educational and Vocational Strategies For Young Adults 

Vocational rehabilitation (VR) services can provide career counseling and guidance to young adults to help identify employment goals and services needed.  Patients are advised to become familiar with the Americans with Disabilities Act (ADA), which protects people with disabilities in many areas of public life, as they navigate how best to disclose their health condition and employment needs to their employer. The following eligibility criteria for VR services must be met to be enrolled and results in the development of an Individualized Plan for Employment (IPE):

  • The individual must have physical, intellectual, sensory, or mental impairment.
  • The impairment must result in a substantial barrier to employment.
  • The individual is presumed to benefit from VR services in terms of an employment outcome.
  • The individual must require VR services to gain or retain employment.

Post High School Education

School counselors, as well as parents and families, play a significant role in advising AYAs as they consider their plans for post-high school educational and vocational opportunities and employment.  AYAs are often directed to consider vocational counseling through their high school, local community colleges, or various community services to assess their interests and abilities. They can also attend job fairs or shadow someone who is employed in a job of interest to get a more realistic view of that career.  Similarly, these strategies are relevant for young adult transplant recipients, who may also benefit from additional guidance by their transplant team.

 

Additional resources:

 

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This content was developed independently by AST and supported by a financial contribution from Sanofi