What is transition from pediatric to adult care?
Growing older happens to everyone. Infants become children who become adolescents and young adults. This is called transition. Successful transition from pediatric to adult care is a purposeful and on-going process of helping young adults and their caregivers (parents and guardians) identify and prepare for changes in care that go along with growing into adulthood. These changes include, but are not limited to:
- Finding providers, hospitals and home care services that work with adults
- Working with current health care providers while deciding if new providers, hospitals and home care services are the right fit
- Developing plans of care that help new providers understand your unique health care needs
- Preparing for changes in insurance eligibility and understanding options for managing health care such as guardianship, conservatorship or other supportive decision-making options
- Offering information and/or practicing skills related to finding options for post-secondary education, vocational or rehabilitation services, independent living, community inclusion, social and recreational resources, and post-secondary and community supports
- Providing parents and caregivers with information specific to their role, including community and professional supports, and advocacy groups
Transition is a team effort between young adult/caregiver/pediatric providers (primary care and specialty care) and community services.
Why does this transition feel challenging?
Transitioning from pediatric to adult care systems can be daunting and uncomfortable. For caregivers and young adults, this transition means saying good-bye to trusted pediatric providers and services. This can be hard. Caregivers might worry about important information ‘falling through the cracks’ or it may bring back stressful feelings from when your young adult was first diagnosed. Gillette Children's understands your concerns and works closely to ensure important health care information is transferred to each new provider.
When does this transition begin?
The care Gillette provides is specialized and many patients have multiple providers. The process of discussing transition to adult services ideally begins during adolescence, between the ages of 12 to 14. This allows time for a gradual and planned transition of providers and services.
Gillette providers work with patients and their caregivers to determine the age for transitioning care. This means some providers will discuss transition earlier or later, than others. This allows transition to be gradual and well controlled and gives patients and their caregivers time to find the ‘right fit.’
However, there are some firm age rules for two services provided by Gillette:
The Operating Room can conduct surgical procedures up to 40 years of age.
The Inpatient Adult Unit can admit up to certain ages, depending on the reason for admission
-Persons up to 40 years of age are admitted following a surgical procedure
-Persons up to 26 years of age are admitted for some medical conditions, depending on the care required
Who is the transition team?
Transitioning from pediatric to adult care is a team effort, and the transition team begins with you. Young adults and their caregivers bring needed expertise to the process. Gillette providers need your questions, hopes and dreams to guide the transition process and transition team. In addition to current healthcare providers, the transition team at Gillette may include the complex care team, social work, therapeutic recreation, rehabilitation therapies, psychology and care management. Talking to all Gillette providers about these services allows you to build a team that is helpful for you. Keep in mind the transition team also includes non-Gillette persons and services. Examples include but are not limited to primary care provider/pediatrician, county case manager, school, vocational and day programs, home nursing and equipment suppliers.
Sharing all current providers (primary care and specialty care) and community services with your transition team helps build a transition plan. This plan lists who and what needs transitioning and what you can do to begin the transition process. Remember, no one person is responsible for transition. It is a team effort.
Are you ready to begin the transition process?
Gillette Children’s is committed to helping our patients realize their potential and navigate the transition from pediatric to adult health systems and other community resources. We compiled a list of frequently asked transition questions and resources, to help you explore each question. If you have any questions, concerns or want to learn more about transition, Gillette is here to help. Please contact us at 651-229-3855.
Frequently Asked Transition Questions
How Will I Thrive?
As you are preparing for what independent living may look like for you, you may want to pursue occupational therapy services to increase your independence with self-care and home management tasks. Your occupational therapist can also help make recommendations to increase access to your living space.
You may want to live at home, independently on your own. Or you may want to share an apartment with friends for companionship and socialization. Check with a Gillette Social Worker or your county case manager for information on living arrangements. Another helpful resource is the Minnesota Association of Centers for Independent Living (MACIL) which is the State-wide link to all of the Centers for Independent Living across the State.
The people responding to your emergency call need critical information about you.There are documents you can fill out in advance to be prepared. Ask to talk with a Gillette Social Worker when you are in clinic, about these forms and developing your plan.
There are many modes of transportation. Maybe you prefer to drive your own vehicle. Or maybe you prefer the convenience of Metro Mobility or public transportation such as the MTC or light rail. Your Gillette Social worker is available to assist you with transportation as well as your county case manager. Depending on your insurance, may also be able to access free non-emergency transportation to medical appointments. Ask to talk with a Gillette social worker when you are in clinic to see if you qualify.
Occasionally, you may need some extra assistance with your personal cares, your chores or might enjoy some companionship. This could include a nurse or personal care assistant coming to your home for a few hours a week. Ask to talk with a Gillette social worker when you are in clinic or connect with your county case manager for assistance.
Where do you go for equipment and supplies? Gillette Rehabilitation Services can suggest vendors and your county case manager can assist with recommendations as well. You can also ask to talk with a Gillette social worker when you are in clinic.
Who is My Care Team?
Your care providers are here to help with the Transition to adult care, which can sometimes feel overwhelming. Talk to your providers when you are in clinic for more information on making this a smooth transition. If you need a coordinated approach to transitioning to adult providers, the complex care clinic can help. More information is available here.
What if something unexpected happens? Having an action plan in place in case of an emergency is piece of mind. Talk to your specialists about what might be appropriate for you.
One of the best things you can do to prepare yourself for a hospital stay or a trip to the ER is to have your Action Plan and First Responder Plan/EMS information up to date. Another good way to prepare is having access to MyGillette, the patient portal, so you can share clinic notes and other information with adult providers. Information on registering for MyGillette can be found here.
Your rehabilitation team can include occupational, physical, and/or speech therapy. They will work with you to increase your skills in the areas that matter most to you. The primary goal of the team is to support you to be as independent and comfortable as possible. You might work on strengthening, pain management, activity independence, use of equipment, communication skills, or other needs that you might have. Ask to talk with the rehabilitation therapies team when you are in clinic.
A Gillette transition social worker is available to assist with almost any question(s) you may have – or point you in the right direction. Talk to your provider when you are in clinic for more information on working with the transition social worker.
It’s wonderful to have someone to talk to about things and talking with your family is a great place to start. Sometimes a professional can help sort things out and put things into perspective. It’s always okay to ask for help. Gillette psychologists and neuropsychologists also provide evaluations to help with college and vocational school accommodations and testing to support planning for legal/medical decision-making in adulthood. You can start by talking with a member of your care team.
Therapeutic recreation helps individuals with disabilities get involved in recreational and leisure activities. The goal of therapeutic recreation is to help all people—regardless of physical or cognitive abilities and limitations—enjoy their lifestyle. While transition may involve new or different leisure or social interests, Therapeutic Recreation can help identify and prioritize what is most important to you.
What Will I Do?
Leisure activities and access to friends/family are important to feeling well-balanced and happy. Your interests and your social connections may change over time. Learning ways to stay engaged with activities or hobbies at home or within the community is something that Gillette can assist with. The Therapeutic Recreation Specialists may assist in identifying new activities, sports, leisure equipment needs, or other problem solving to incorporate these into your lifestyle!
Having a career or career goals can be exciting. You may want to pursue post-high school education to obtain a degree or special training. Or you might just want to begin working. Having a job you like gives you purpose as well as money. You can be engaged in something that’s stimulating as well as satisfying. Your Gillette social worker is a great place to start. You can also begin by contacting the Vocational Rehabilitation Services in your county.
Discovering what you want and like to do to stay active can be a lot of fun! You can engage in team sports or solo adventures. Gillette Therapeutic Recreational Therapists are available to help you get started.
Life can get very busy and may be different from day to day. How will I juggle everything? Having some guidance and assistance managing my time and all the things I must do would help make things less stressful. Start by talking to a member of your care team.
How Will I Pay for Things?
Work, career planning and job seeking can be hard for everyone. Many supports are available to help you achieve your employment goals. Gillette's Transition Social Worker can talk with you and provide direction is finding resources that support your employment goals. Another resources is the Division of Vocational Rehabilitation.
At some point, you may need to have your own insurance. You can discuss this with your parent(s)/guardian to determine the best course of action when the time comes. Gillette social workers are available to help you learn how your disability impacts your options for insurance coverage.
Waivers are programs that you may qualify for through your county if you are deemed "disabled." Waivers can pay for equipment or services that support daily living. Talk to Gillette social work to learn more about waivers and if you qualify.