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Welcome back! As you know, we've been exploring transition, or the process of getting ready for medical care as an adult.
We've talked about what transition is and why it is important as well as the general steps in transition. As you can imagine, the general timeline applies to most teens, but can be much more complicated in youth that have complex medical needs. Some of this complexity can come from the number of providers involved (which can be many) or may relate to differences in intellectual ability that make it important to discuss things like whether another adult should be involved in helping the young adult make decisions after the age of 18.
In our final post in this series, we're going to explore some of these additional considerations, so that the transition process can be as smooth as possible for all teens. You might remember that I said in the first Transition post that whole conferences are devoted to this subject, so I also want to set realistic expectations: because we're limited to the space of a blog post, we're not going to be able to cover every transition scenario out there, but we'll do our best to highlight some areas to think about and strategies to make sure that things do not get missed.
The steps outlined in our last post are still relevant for a teen with complex medical needs, but may need to be adapted. For example, it's still important for youth that will eventually meet with their adult provider on their own to have time alone with their pediatrician, and youth with complex medical needs should definitely practice the skills that they'll eventually need to participate in managing their health, whether that be learning their medications, picking up a prescription from the pharmacy, taking a cab independently, or making a list of questions for their provider.
Beyond the medical: The school system and transition
Many youth with complex medical issues will have either a 504 plan or an individualized education plan (IEP). These plans are meant to address specific challenges faced by students with mental or physical disabilities that impact the way that they learn and the support that they need at school. Often, but not always, a 504 outlines a specific plan for students that remain in a mainstream classroom and an IEP outlines a specific plan for students that will receive specific special education instruction or accommodation, which may or may not be in a mainstream classroom.
We're going to stick to the basics here, but there is more information about 504s and IEPs and how to get them in place in the links above. A student with special needs may be eligible to continue to receive support from the public school system through age 20 or 21, though this varies by state. For IEPs in particular, transition planning is a required part of the process and must be initiated by age 16 (and even earlier than this in some states). The goal of transition planning in an IEP is to help the student and family set goals related to training, education, employment, and independent living skills (when appropriate) and the services and support needed to reach those goals.
This planning should also look at the services that a student is receiving and anticipate where those services will be provided after a young adult is no longer eligible for public school services. For example, a student with cerebral palsy may need a plan to transition physical and occupational therapy services from the school setting to a private practice and rehabilitation center. The transition plan should address this and include a plan for communication between providers in that process. IDEA 04 (the federal legislation that outlines requirements for IEPs) requires schools to provide a "summary of performance" to students that either exceeds the age for services in their state or are no longer eligible for special education services because they graduate from high school with a standard diploma. This summary should include recommendations about how the student can meet future goals as well as information on academic and functional performance.
Families can advocate for their young adult during the IEP process by ensuring that a transition plan truly addresses that youth's goals and by starting the process of a transition plan earlier than 16 if appropriate. For example, part of anticipating independent living may mean that it is appropriate for a youth with intellectual disabilities to have a plan for health education, including sexual health education, that is appropriate for their cognitive and developmental level. Depending on the youth, it may be important to get a process like this started earlier than age 16, so that a curriculum can be rolled out over time. For additional discussion of transition planning in an IEP, check out:
The National Collaboration on Workforce and Disability's "The Guideposts for Success"
The PACER Center's National Parent Center on Transition and Employment, under their "Mapping Your Dream" series
Legal considerations in transition
As we discussed in our last post, there are a lot of changes that happen at age 18 from a legal point of view, including changes in who is required for consent for medical care (the youth, not the parent!), who has access to the medical record, and what public insurance options a particular teen may be eligible for. It's important to anticipate all of these issues before a teen is 18.
We'll focus here on guardianship and shared decision-making, which can be a long and complicated process. Who should consider this issue, you may ask? When there is a teen that has an intellectual disability or mental health issue that poses challenges for their ability to make decisions about their health or finances, it is important to consider whether there should be a formal arrangement for guardianship or shared decision-making. The goal in this process is to honor the youth's ability to make decisions as much as possible while involving family or other adults in decisions where the youth might have limitations that would make them vulnerable or unable to fully weigh their options.
Many people think that the only alternative to independent decision-making is full guardianship. Guardianship is a legal process in which there is a request to a court to assume responsibility for a person; the court may then appoint an "agent" who may be a parent or family member, to act as the youth's legal guardian. The role of the guardian and extent of their authority is determined by the court or by state law.
Guardianship can be an important option, particularly for youth with significant intellectual disability. There are, however, alternatives to guardianship that still allow for shared decision-making. Some of these are informal and involve discussion and consultation with family or other adults as decisions arise. Other arrangements are more formal, and might include options such as joint financial accounts or financial or health care power of attorney (in which a person can appoint another to make decisions about health care or finances in particular circumstances).
Waivers of confidentiality can often be completed at a health care clinic to allow parents or other family members to have access to records or to more freely communicate with a young adult's health care providers. In short, shared decision-making or guardianship options are important to consider, but are anything but straight-forward. First and foremost, all of these arrangements take time, so it's best to start exploring these options early (at least one to two years before a person turns 16). It can be helpful to discuss these issues with your primary care physician, meet with a lawyer with experience with disability rights, or connect with a regional transition center that may be able to connect you with local resources. At times, additional evaluation, such as neuropsychiatric testing, can help a youth and family better understand the youth's decision-making capacity.
For more information about guardianship and shared decision-making, check out:
Gottransition.org's "Guardianship and Alternatives for Decision-Making Support"
The National Resource Center for Supported Decision-Making, which includes educational resources for individuals and families as well as information about relevant legislation in your state
Those regional transitions centers that I mentioned? Here's your resource for finding yours in Wisconsin! Links to transition centers in other states can be found here (click on Federal and State transition resources in the sidebar).
Oh, the insanity! Transitioning care with a large medical team
OK, so the IEP transition plan is rolling and your family has considered the legal aspects of transition. For many youth with complex medical needs, the actual transition to adult providers may be the rockiest part, particularly if they are followed by many different specialists. As we alluded to in our last post, different specialty clinics may have different ages for transition to an adult provider, and multidisciplinary clinics that exist for pediatric patients (like a cystic fibrosis clinic with dietitians, respiratory therapists, social workers, and pulmonologists all in one place, for example) might not always have an adult version to jump right in to.
The general principles discussed in our last post still apply: ask early and often how different providers handle transition in their clinic. It may be helpful to develop a transition file where you can organize information by specialty and keep track of what steps have been taken in different settings. This plan of care can help identify overall goals and who is responsible for different action items in transition and this transition flowsheet can help guide you and your providers in making sure that pediatric providers are communicating with adult specialists in an appropriate way.
For transitioning in both specialty and primary care, it may be helpful to ask your care provider to generate one or more condition fact sheets related to your medical condition(s) (here's a sample). These can not only be a great resource for a young adult as a patient, but can help a new primary care provider or specialist understand aspects of rare health conditions that they might be less familiar with. For many people, however, transitioning from pediatric to adult care with multiple providers involved can still be overwhelming. Many areas and hospital systems have programs that can be helpful in coordinating this process, and it's helpful to try to find out about what resources might be helpful early in the transition process (when the youth is as young as 12-14 years old!).
Some healthcare systems have complex care programs for youth with complex conditions that can include both care coordination and transition planning, and sometimes there are programs, through a hospital system or state or county resource, that connect young people with case workers who can facilitate tracking transition and making sure that all of the boxes get checked. If you're interested in such a resources and don't know where to turn, talk to your primary care provider or check out your local transition center (click on Federal and State transition resources in the sidebar).
Ready? Set? Transition!
All set, right? It's important to acknowledge that transitioning to adult medical care is often not easy, and can be even more challenging when complex medical conditions or other special health care needs are involved. Through this series, however, we hope that we've given you a basic road map and tools to navigate this process and empower youth and their families in asking for the support that they need in the process.
I'd like to thank Mala Mathur, MD, for her review of and suggestions for this post.