What is transitioning 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 Specialty Healthcare 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 Specialty Healthcare 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
Where will I live?
How will I know if I need a guardian when I reach 18? With the help of your parents, you can connect with a Gillette Social Worker the next time you’re in clinic or your county case manager.
You may want to live at home or 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.
The people responding to your emergency call need critical information about you. There are documents you can fill out in advance to be prepared. Speak to a Gillette Social Worker about these forms and developing your plan.
What if something unexpected happens? Having a plan in place in case of an emergency is piece of mind. Talk to your specialists about what might be appropriate for you.
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.
Occasionally, you may need some extra assistance in doing chores, or may want some companionship. This could include a nurse or personal care assistant coming to your home for a few hours a week. Contact a Gillette social worker when you are in clinic or connect with your county case manager for assistance.
Where do you go for any equipment or supplies? Gillette Rehabilitation Services can refer you to a vendor or your county case worker can assist with recommendations as well.
Who is my care team?
Your care providers are here to help with the Transition to adult care, which can feel overwhelming. You can speak to your provider when you are in clinic for more information on making this a smooth transition.
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 Emergency Care Plan and First Responder Plan/EMS information up to date. That way, the doctors will have all the important medical information they need to better assist you.
The Gillette Rehabilitation Therapies staff can assist you in developing a plan to suit your needs, interests and lifestyle. Increasing your mobility or doing some strength training might be something you would like to do. Working with Gillette Recreational Therapists as well to make this fun and engaging.
The Gillette social workers are available to assist with almost any question(s) you may have – or point you in the right direction.
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. You can start by talking with a member of your care team.
What will I do?
Seeing family and friends is important. This may also include going to a church, mosque, synagogue or temple. Shopping, music, reading and discovering hobbies are great pass times too. Check with the Gillette Recreational Therapy folks to assist in helping you find great activities that fit you and your lifestyle!
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 Recreational Therapists are available to help you get started.
Having a career or career goals can be exciting. You may want to pursue a post high school education to obtain a degree. Or you might just want to begin working and receive some special on-the-job training. Your Gillette social worker is a great place to start. You can also begin by contacting the Vocational Rehabilitation Services in your county.
Working at a job you like will give you purpose as well as money. You can be engaged in something that’s stimulating as well as satisfying. A good place to start is by contacting the Vocational Rehabilitation Services in your county.
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 have to do would help make things less stressful. Start by talking to a member of your care team
How will I pay for things?
You may want to work to earn money and be engaged in something that’s stimulating as well as satisfying. You can start by contacting the Vocational Rehabilitation Services in your county.
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. At 26th birthday, straight MA get letter saying need to switch to Medicare. Talk to your county social worker or ask to talk to a Gillette social worker the next time you are in clinic.
Waivers are used for many things – they help pay for what you need to live. Your county case manager can help guide you through what a waiver is and how it works specifically for you.
Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI) are two ways to receive money for living expenses. You will move from Supplemental Security Income to Social Security Disability Income when a parent becomes eligible for Social Security. Your county case manager will be able to assist you with any questions you have as well as logging into SSA.Gov.