Transition to adult care

Introduction to transition

What is transition?
Transition is a process of moving from pediatric health care to adult health care. This transition often presents new challenges for youth with chronic illness or special needs and their families. Youth need to learn, practice and become confident in the skills they need to manage their own health. Families need to learn about the adult services that will help support their teen in the adult world.

Youth and their families often develop strong bonds with their pediatric care team members over time. Moving on to adult care can seem scary. The transition process takes several years. There are specific skills that teens can begin to learn when they are young that can lead to greater independence as adults. Youth, families and providers working together as a team will provide the best possible outcome during the transition process.

Although transition to adult health care is one part of the transition process, there are other transition issues that youth need to deal with during the process. These include adult services, education, employment, financial preparation, transportation and recreation. When planning for transition, consider who the youth or family would like to have help from. A nurse or physician team that has worked with the youth or family regularly to provide specialty care may be an ideal candidate.

What are concerns related to transition? Typical barriers that youth and families might experience include:

  • Youth and family feel the loss of respected caregivers and are forced to trust the new and unknown
  • Parents' inability to buy into youth's independence or assessing developmental readiness for transition
  • Pediatric professionals sometimes underestimate the potential independence of youth

See related topics below:

Self-management and self-advocacy

Self-management

  • How well does the youth understand the plan of care? Make sure he or she can explain the treatment plan and be able to list medications, the reason for taking medications and any side effects
  • What is the emergency plan of care? If necessary, use a medical alert bracelet or system
  • Does the patient have the necessary information to schedule and coordinate appointments? Identify providers, frequency of contacts and how to reach them
  • Insure the patient has the required information to order medications, supplies and equipment

Self-advocacy

  • Encourage the patient to write down health-related questions before appointments
  • Inform health care providers which family members are involved in the decision making regarding transition and medical care
  • Create a list that provides all resources for addressing transition-related needs and questions

Transition planning

What is a transition plan?

  • A transition plan is a written plan based on transition needs or issues that should to be addressed before a youth is ready to transition to adult care
  • After transition issues have been identified, action steps should be developed with input from the youth and his or her family. A responsible person and goal date should be identified for each action step
What are some issues that the youth and family may need to address as part of the transition plan?
  • Self-management of medical condition
  • Self-management of medications
  • Self-management of equipment/supplies
  • Management of financial issues
  • Adult decision-making
  • Adult services
  • Education plans after high school
  • Employment plans
  • Independent living, housing, transportation and recreation

Locating adult providers

Health issues that adults face are different than a child's health issues. It is important to have a primary care provider and specialty providers who are experienced in addressing adult health care issues.

Transition is a natural part of the developmental process from childhood to adulthood, but it can be scary. After many years of being part of the nurturing, family-centered pediatric health care system and developing strong bonds with various health care team members, it can be hard to make a change. Youth, families, providers and the community should work together as a team to promote the best possible outcome during the transition process.

Steps to consider:

  • Talk with the recommended pediatric primary/specialty care provider to recommend an adult primary/specialty care provider
  • Meet with the new adult primary care provider before making a decision
  • Check the health care insurance policy to see which adult primary/specialty care providers are approved by the insurance plan
  • Make an appointment to meet with a potential adult primary/specialty care provider. Bring a list of questions

What information will the adult providers need?

  • Copy of the transition plan
  • Copy of a clinical summary. A clinical summary is a document that covers important previous and current medical information. It introduces the youth to the adult primary and specialty care providers and aids in the initiation of care. It should be developed with input from the youth, family and all current health care providers
  • Copies of medical records
  • Contact information for someone on both the pediatric primary and specialty care teams. This is important if medical information needs to be clarified

Guardianship issues

When a teen turns 18, he or she automatically becomes his or her own legal guardian regardless of mental health or cognitive impairments, unless the court has appointed a legal guardian.

At age 18, the youth should be signing his or her own consents for procedures, authorizations, release of information, discharge instructions or other legal forms. Some youth with cognitive or mental health impairments are unable to make their own financial and medical decisions and need legal guardians.

If there are concerns at 14 years old that the youth will be unable to make his or her own financial and medical decisions as an adult, goals should be incorporated into the individualized education plan to help develop decision-making skills. Decision-making skills should be assessed annually. If there are concerns at 16 or 17 years old that the youth will be unable to make his or her own financial and medical decisions as an adult, a competency assessment will need to be completed. Contact a social worker to help initiate this process.

"Incompetent" is described by the State of Wisconsin as the level at which a youth is impaired in providing for his or her own care or custody, has diminished level of functioning in aspects of daily living and is unable to make his or her own informed and educated decisions due to a delay, disability or incapacity.

Insurance issues

As youth reach the teenage years and transition into adulthood, different types of insurances become available or unavailable to them.

A youth may be discontinued from his or her parent's private insurance due to age or change in student status, or may become ineligible for certain public aid programs.

It is very important that every youth with medical needs obtain insurance available to them through public aid and community programs regardless of age or stage in life.

Identify the type of insurance that applies:

  • Private insurance. The insured will be in school full- or part-time and remain on parent's insurance or will be self-employed and maintain private insurance through place of employment, or qualify under parent's insurance as an adult. It is important that the youth or his or her parent discuss the requirements for keeping insurance for an adult dependent with the insurance company
  • Government insurance: Medicaid (such as T19, BadgerCarePlus or HMO) or Medicare. In most cases, youth will remain on Medicaid or Medicare. BadgerCarePlus and Katie Beckett provide coverage until a youth turns 19 years old. However, SSI T19 requires that the youth reapply when they turn 18 years. When it is time to reapply (just prior to 18 years for SSI T19, just prior to 19 years for BadgerCarePlus), the process can begin at access.wi.gov for Badgercare or through the Social Security Office for SSI T19. A child who was receiving Katie Beckett will need to apply for SSI T19. At the time of reapplying, it is likely that any disability will need to be redocumented and the youth will need to requalify for benefits. It is important that the youth or their parent/guardian discuss the requirements for maintaining government insurance for an adult with a disability with the case worker before they turn 18 years
  • No insurance, legal citizen. Youth can see what government programs, such as Medicaid or BadgerCarePlus, for which they qualify at access.wi.gov or by calling the Recipient Services Hotline at (800) 362-3002. Youth also can receive Medicaid by applying for and being awarded SSI Disability or can apply for Medicare as an adult
  • No insurance, undocumented. Youth will continue to apply for charity programs and work toward achieving legal citizenship

Employment, education, recreation

Youth with special needs leaving high school have the same desire and need to participate in the community as their peers. Many youth with special needs require extra time and help transitioning from school to community life. Families are a key player in decisions related to transition to the community.

Preparation for transition covers areas that most people need when becoming an adult:

  • Postsecondary education
  • Employment
  • Independent living skills
  • Recreation and leisure activities

If the youth has an individualized education plan, schools are mandated by law (starting at age 14) to write and implement a plan that includes a coordinated set of activities that help prepare the student for life after high school.

Transition goals are developed collaboratively by youth, family and school staff based on individual strengths, preferences and interests of the youth. If the youth or family expresses an interest in postsecondary education, know that rights and responsibilities within postsecondary education are different from high school.

Common postsecondary education options are:

  • Technical school with support
  • Two- or four-year college with accommodations
  • Specialized programs for students with cognitive disabilities
Ranges of employment options exist for people with disabilities. These include:
  • Volunteer work
  • Competitive employment - working in the community with or without assistance from an adult service provider for paid wages and benefits typically provided for that type of job
  • Employment with accommodations - working competitively with certain changes to the work area, or with use of specialized equipment (such as use of assistive technology). People with physical disabilities often require these accommodations
  • Supported employment - working in a job in the community with support and assistance (such as job coaching) from an adult services agency
  • Self-employment - owning and operating a business to earn money. Usually this is done with support from an adult services agency
  • Community rehabilitation programs (sheltered employment) - Places in the community where work is done in a group setting under close supervision. Employees are paid based on piece rate or production
  • Day service programs can be an alternative to paid employment. These programs emphasize the development of social and functional skills and community integration.
Under the new long-term care system, integrated employment (a job in the community) is the preferred option for people with disabilities. Employment agencies that support individuals with disabilities provide a range of services that include:
  • Assessment of job skills
  • Work skills training, such as job shadows, short-term work experiences or vocational training
  • Job development, with assistance in finding jobs that match the skills of the individual seeking employment
  • Job support and training, such as on-the-job support for learning and performing job tasks. It can be temporary or long-term
  • Benefits counseling to provide assistance for individuals who receive SSI or SSDI so benefits are not jeopardized by employment

Participating in leisure activities allows people to connect with others and develop social networks, friendships, hobbies and interests. Many communities have opportunities for both inclusive and segregated forms of social/recreational activities. These can include:

  • Travel
  • Recreation
  • Sports
  • Arts
  • Self-advocacy classes
  • Personal development

Housing and independent living

Thought should be given to where the youth will live when the family is no longer able to provide care. Most youth (with or without a disability) experience an increasing need for independence as they develop and mature.

Youth with special needs require extra time and help developing skills for living away from home. As parents age, caregiving becomes more difficult. Ranges of residential living options are available in most counties. Choices are made based on individual needs and necessary levels of support (personal care, money management, meal planning, etc.). Levels of support can change over time so living arrangements can evolve.

Common options include:

  • Community-based residential facility (24-hour supervision in a five- to eight-bed facility for individuals who are dependent on others for care)
  • Adult family home (family home setting with supports)
  • Supportive living (individual chooses where they want to live and needed supports are provided by outside agencies)

Family resources

General information on transition

Self-managment and self-advocacy

Legal issues (insurance, guardianship)

Independent living (education, employment, recreation, housing)