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Transition Planning Information for Physicians to Share with Families

Transition planning is a process that occurs as teens develop and become young adults and learn to function more independently. It is a time of realizing potential, developing a sense of self, and functioning more autonomously. Transition can be difficult. Youth with special health care needs (YSHCN), including those with disabilities, can find this time challenging. Many transition areas will require the learning of new skills that take time, practice, and adaptations to be accomplished.

Transition planning for these youth requires planning, and will evolve and may change over time. Some articles recommend that the process begin as early as age 12, but clearly by 14. Skills such as organization, self-advocacy, learning about one’s disability, and addressing the many areas of life where assistance might be needed take time to develop. The following discussion points are provided as a framework to assist families, physicians, and young adults with special health care needs to begin the conversation, and help them transition to the most independent life possible.

Transition can be divided into three major areas:

  1. Transition from pediatric health care to adult providers
  2. High school to post-secondary education or employment
  3. Transition from home to more independence in the community
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(click to expand) Transfer from pediatric health care to adult providers

A young person’s health is critical to his or her overall well-being. Good health is crucial for individuals to be successful at home, work, school, and in the community. For individuals with disabilities, transition planning may involve understanding how to manage their chronic health condition as well as having the ability to recognize and address issues related to an acute illness, and developing a healthy lifestyle. To ensure a successful transition, youth with special health care needs have to secure accommodations or needed supports that enable them to be successful:

  1. Transition planning goals: It is important to identify the short- and long-term goals that lead to healthy living, independence, and employment. These may change as the teen matures and learns more about the potential long-term impact of his or her disability. An individual’s goals may shape care coordination when the health care transition process begins. When setting goals, it is also important to consider the cultural and racial values of individuals with diverse backgrounds.

    Areas of specific goals to discuss with parents and youth:
    • Will she be able to take care of herself, and have her health care needs met?
    • Where does the youth plan to live?
    • Will he pursue additional education, or want to work after high school?
    • What are his interests? How will these be incorporated into his life?
    • Can she learn to advocate for herself?
    • What kinds of supports will be needed?
  2. Self-advocacy: Youth with special health care needs display a wide range of abilities related to self-advocacy. Each clinic visit offers an opportunity to build advocacy skills, empowering the youth to be more involved in transition and increasing the opportunity to gain more skills. The following list offers suggestions of where to start the process of addressing each teen’s skills, and building on their knowledge and ability to self-advocate.

    More information for professionals and parents:
    • Does the individual know his or her diagnosis?
    • Can the young adult describe his or her disability?
    • Is the young adult able to express her needs and advocate for herself?
    • Is the individual able to understand her physician’s instructions?
    • Can he be responsible for his own medications?
    • Can he follow directions on a medication label?
    • Does she know the names of her medications?
    • Does he know the side effects of his medications?
    • Is she able to understand the importance of medication compliance?
    • Would it be beneficial for the youth to have a medical binder, portable medical summary, or one-page summary outlining his or her disability and special health care needs and how these may impact behavior?
    • Is there a role for assistive technology to help with tasks such as scheduling, reminders, and contact information?
  3. Addressing emotional needs: Transition is a time for young adults that may include increasing awareness of their disability. Youth, including those with disabilities, begin seeing themselves as adults. They want to participate in conversations with their physician and should be part of the decision-making process.

    Information for physicians:
    • While some youth meet various goals, youth with special health care needs and his or her family may experience concerns and anxiety as they recognize that some of their goals are not possible at this particular time. This may include the desire to obtain a driver’s license, or the goal of being able to live independently.
    • Consider referral to a counselor, therapist or diagnosis-specific support group if appropriate.
    • It is helpful to know what resources are available in the community to support both parents and youth as they start the process of transition. This may include respite care for the parents and/or personal care attendant services for the youth.
    • In some cultures, there is no transition into the larger community as the individual with disabilities or special health care needs is expected to remain with his or her family.
  4. Addressing basic health care needs: All youth, including those with special health care needs, have basic health needs to consider, including nutrition, hygiene, exercise, substance abuse, safety, risk-taking behaviors, reproductive education, and sexuality. Some youth will need extra supports in place to make good decisions, and master these skills.
  5. Organizational skills needed for success: Identify skills that the parent and youth can include in the Individualized Education Program (IEP). Transition goals on the IEP can be connected to medical transition needs.

    Potential IEP objectives/goals:
    • Does the youth know how to keep a calendar? Can he follow it?
    • Does he know how to make an appointment, and the importance of being on time?
    • Can the school nurse be a resource to teach the youth about their specific medications, including the drug names, indications, dosage, and possible side-effects?
    • Can the youth explain basic insurance principles such as deductibles and co-pays?
    • Does he know how much money he will need to pay at the time of the medical appointment?
    • Does she understand why she needs to carry an insurance card, and when it will be needed?
    • Does the youth know how to have a prescription filled, when and how to order refills, and how to pay for the medications?
    • Revisit those transition areas where additional practice is needed to ensure competency.
    • Start the transition process early to allow plenty of time for the youth to develop effective skills.
  6. Ensuring compliance: Compliance with medication is often the cornerstone to successful transition for many youth with special health care needs or disabilities. It is important to answer these questions:

    Considerations for professionals and families:
    • Does he have reasonable organizational skills?
    • Who will be responsible for administering medications?
    • Will she need help managing her medication, or will she be able to be independent by using helpful tools such as a daily pill organizer?
    • Can she be trusted to take her medication?
    • Does the young adult understand the importance of staying on his or her medication?
    • Is there technology available that can remind him to take his medications?
    • What supports have been put in place? Are there additional supports needed?
  7. Health care financing: There are a number of resources available to youth with special health care needs to cover their health care-related expenses. Families or guardians need to contact their city, county, or state disability service office to apply.

    Information for physicians to share with families:
    • Does the individual need to continue on the family’s insurance plan?
      • The Affordable Care Act enables individuals to remain on their parent’s health insurance plan until age 26.
      • Some plans allow adult children with disabilities or special health care needs to stay on their parents’ plan for life.
    • Is the individual eligible for adult Medical Assistance, based on disability or income?
    • After age 18, will the young adult qualify for Social Security based on her resources and/or disability?
    • Does he qualify for waivered services for housing?
    • Are there other state-specific resources available?
  8. Transferring care: The transfer should occur as an integrated plan and be as seamless as possible. There are some changes that occur during transfer from pediatric to adult health care systems:
    1. The process of transferring from pediatric to adult health care:

      Suggestions for pediatric physicians to discuss with families:
      • Interview new adult providers with a support person, such as a parent, guardian or caregiver.
      • Maintain a link with the pediatrician to answer questions or provide information; plan on some interim communication.
      • Plan for the possibility of overlapping adult and pediatric care, especially if multiple specialists are involved.
      • Understand that for some youth, the transition may be a more gradual process.
    2. Changes that occur during transfer from pediatric to adult health care systems:

      Considerations for professionals and families:
      • What adult provider will deliver care in place of specialists that are unique to the pediatric care system (e.g., developmental behavioral pediatricians)?
      • Will the youth attend appointments alone? If not, who will accompany him?
      • How will information be communicated to medical personnel?
      • How will information be implemented by the youth?
      • How will compliance be ensured?
      • How will the guardian or family be informed? How will the family be impacted by no longer having the primary role in this process?
      • Is there a role for technology in this process?
      • Would it be useful for the family to develop a one-page summary or medical binder?
  9. Develop a transition health plan: Set up an action plan with the family and youth for acquiring needed skills. Use the assessment tools from PACER to determine what skills the individual needs, and can realistically accomplish via the IEP or at each doctor visit.
  10. Additional resources: For additional resources, please visit PACER.org/health.

Transition from high school to post-secondary, education or employment

After leaving high school, young adults, including those with special health care needs and disabilities, take a variety of paths toward further education or work experiences depending on their interests and abilities. Some may have the abilities needed to pursue higher education but will need physical accommodations.

  1. What are the youth’s interests, level of functioning and what kind of activities is he able to participate in?
    1. Is the individual interested or able to pursue post-secondary education; in what setting, and with what supports?

      Considerations for college-bound students:
      • Does the individual have good organizational skills?
      • Are there disability services available on campus?
      • Will the student be able to order his medications? Will he carry an insurance card? Can he make insurance copays? Will he make and keep appointments?
      • Is there technology available to help the youth develop organizational skills to ensure medical compliance?
      • Who will be the support staff and emergency contacts if there is a problem, medical or otherwise?
    2. Will the young adult pursue further education, such as community college, a job training program, or training for a technical certificate?
    3. Will the individual be able to work? What kind of job might he be able to do, for how many hours, and with what supports?

      Work supports and options:
      • Is she eligible for vocational rehabilitation services or supported employment through Medicaid?
      • Will he need a job coach?
      • How many hours will she be able to work, and what degree of support will be needed?
    4. Is a day program a good resource?
  2. Transition planning in the Individualized Education Program (IEP) process: How can the IEP team prepare the student for further education or work? The family should work with the school, and incorporate various goals within the IEP. Each subsection in this document allows for opportunities to develop IEP goals.

    Examples of IEP considerations:
    • Organizational skills:
      • Does the individual know how to sort or file documents?
      • Is she able to plan ahead? For example, when completing a process such as planning a meal, refilling a prescription, or scheduling an appointment, can she organize the steps in a logical order?
      • Does he know how to use a cell phone?
    • Identifying emotions:
      • Can the youth recognize her feelings such as happiness, sadness, anger or frustration?
      • Does he have a plan to cope with different feelings in various settings?
    • Using assistive technology:
      • Can the youth accurately keep a calendar?
      • Does she know how to schedule an appointment?
      • Does he understand the safety issues associated with using the Internet?
      • Are there specific devices available to meet his or her individual needs?
    • Transportation:
      • Is driver’s education appropriate?
      • If the youth needs to learn how to use public transportation, does he or she also need to learn how to read a map, navigate unfamiliar neighborhoods, and understand transit schedules?
      • Is the youth able to be safe when using public transportation?
    • Job applications:
      • Does the individual know the basic information to complete a job application?
      • Does she need practice with job interviews?
      • Is she able to articulate her strengths and weaknesses appropriately?
    • Work skills:
      • Does the youth understand how to dress appropriately for work?
      • Does he know appropriate subjects to discuss at work?
      • Does she understand what language is appropriate or inappropriate at work?
      • Is he clear about work ethic and what it means to do a good job?
      • Does she understand the role of a supervisor or manager and how that will impact her as an employee?
    • Money management and budgeting:
      • Can the youth accurately count money?
      • Can she make appropriate change?
      • Does she know how to write a check or use a debit card?
      • Can he develop a realistic household budget?
    • Cooking and cleaning:
      • Does the youth know what constitutes good nutrition?
      • Can he read a recipe or find one online?
      • Can she make a grocery list?
      • Does he know how to shop for ingredients?
      • Can she follow basic cooking instructions?
      • Does he know how to safely operate home equipment (e.g. vacuum or stove?)
      • Does she know how to safely use common household cleaners?

Transition plan from home to more independence within the community

The issue of adolescence for all teens and young adults is the transition to interdependence, learning to take care of themselves, and functioning as a contributing member of their community. At this age, some youth with special health care needs and disabilities may not have mastered all of the basic skills of daily hygiene, or may be physically unable to perform tasks without assistance. Additional supports in housing, transportation, decision making, and financial management may be needed in order for the individual to be successful.

  1. Accessing services: Until age 18, family members and others have located information and services for their young child with special needs. How will that change?

    Questions for physicians to pose to families:
    • Who will be responsible for arranging the youth’s care?
    • What responsibilities will he or she have? What will need to be done by someone else?
    • Who will identify community resources such as: Family-to-Family Health Information Centers, Parent Training and Information Centers, and Independent Living Centers?
  2. Housing: Where will the young adult live? Housing is one of the most challenging aspects of the transition process for youth and their families.

    Topics for physicians to discuss with families:
    • What are the youth’s goals and attitudes towards future housing?
    • Is the family proactively developing a plan for future housing needs?
    • Does the family have a case manager, or do they need to call state or county disability services to arrange for a case worker to assist them?
    • Will the family choose to keep their adult child at home for a period of time or until they are no longer able to care for them?
    • Are group homes and more individualized settings (e.g., adapted apartments) available in the community?
    • How does housing need to be customized to fit the individual’s needs for the least-restrictive environment including physical accommodations, accessibility features and other modifications?
  3. Transition to new in-home care staff: There are a number of services available to support individuals with special health care needs and disabilities.

    Types of staff available to families:
    • Personal care attendants (PCA), nursing staff, and service support professionals (SSP) provide a variety of support for independent living and can serve different functions.
    • Support staff for supports such as cooking, personal care, and budgeting or money management can assist with the transition from dependence on family members to more independence.
  4. Transportation: In order to travel to appointments, work, community activities or family events, youth and adults with special health care needs and disabilities will need to have a plan for transportation.

    Considerations for physicians and families:
    • What form of transportation will the youth be able to access?
      • Will he or she be able to drive? (Individuals may need an assessment to determine if their capacity allows them to operate a car safely.)
      • Does he have a vehicle? Will he need adaptations to a vehicle?
      • Can he learn to use public transportation?
      • Is she eligible for adapted mobility services?
  5. Decision making: Up to age 18, the individual’s parents or guardian make virtually all of the important decisions. Once individuals turn 18, they are legally considered adults, and legal procedures need to be taken to protect them if they are unable to make reasonable decisions on their own.

    Information for physicians to share with families:
    • Adults need to sign a consent to release information if a court-appointed guardian is not in place.
    • Will the individual be able to make sound medical, financial or legal decisions independently? If not, families need to be aware so they can obtain guardianship before the youth turns 18.
    • Other legal considerations include conservatorship, power of attorney, and advance directives.
  6. Self-care and chronic condition management: What skills does the individual need to have, and what is he or she able to do?

    Considerations for families:
    • Can he or she perform basic daily activities such as dressing, grooming, and feeding?
    • Does she know how to cook, clean, and do laundry?
    • Is she capable of managing her finances?
    • Can he comply with his medication regimen?
    • Can she make and keep appointments?
  7. Communications: How effectively can the individual with disabilities or special health care needs communicate his or her needs, and have them met?

    Considerations for physicians and families:
    • Is the teen able to appropriately express his desire for more independence, and his feelings about the changes in family dynamics that are occurring?
    • Is there a support network for the individual and parents?
    • Is there assistive technology that will enable the young adult to communicate more effectively, or function more independently?

Transition for youth with special health care needs can be a very positive experience as well as a challenging process that requires the collaboration of medical providers, schools, and families. It is important for families to start the process when the youth is 12 to 14 years old, and identify short- and long-term goals. Progress toward these goals can be broken down into small steps and included in both the IEP and physician visits. The goals will likely be modified over time as the individual matures and becomes a young adult. The discussion points and checklists provided here are intended as a helpful starting point for physicians and families to assist teens and young adults as they transition into independent living.

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