Q&A: Helping youth with disabilities transition to adult medical care
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Key takeaways:
- Advances in medical care mean more youth with disabilities are transitioning to adult care.
- Pediatricians should initiate transition planning early on and support youth and families.
A new policy statement from the AAP provides guidance on how to help youth with intellectual or developmental disabilities transition to adult care.
Each year, an estimated 750,000 people in the United States turn 18, assuming the “rights and responsibilities of adulthood,” including the legal right to make medical decisions independently, according to the authors of the statement.
Advances in medical care mean that more youth with intellectual and/or developmental disabilities (IDD) are also transitioning into adulthood, they wrote, noting that the absence of a formal transition plan for them is associated with poor health outcomes.
The statement recommends the establishment of support teams that include caregivers, teachers and pediatricians who engage in transition planning when the child is aged between 12 and 14 years.
Pediatricians are advised to advocate for the least restrictive decision-making environment for their patients and familiarize themselves with local and state resources supporting disability and autonomy for youth with IDD, including medical-legal partnerships.
We asked Renee M. Turchi, MD, MPH, FAAP, professor and academic chair of the department of pediatrics at Drexel University College of Medicine in Philadelphia and member of the AAP’s Council on Children with Disabilities, about the statement, including why it was created and what pediatricians need to know to ease these transitions.
Healio:What prompted this policy statement?
Turchi: I have been a pediatrician for more than 20 years. This policy statement was prompted from being in the field and caring for children and youth with IDD and recognizing the role of supportive decision-making in their transition to adult-oriented systems. There are legal considerations that we are not exposed to in medical school or training.
Early on in my career, we worked on the launch of Tower Health’s Center for Children and Youth with Special Health Care Needs. We had a patient for whom we failed to consider alternative decision-making, which negatively impacted that patient’s care. This prompted us to engage with community partners and establish a medical-legal partnership.
Needing to explore this area further, I approached my colleague, Dennis Z. Kuo, MD, MHS, FAAP, a member of the AAP Council on Children with Disabilities, and an author on this policy statement. I shared my personal experience with patients and the medical-legal partnership we have within my practice. [As members of the council], we are always thinking about ways to support pediatricians caring for children/youth with IDD. As such, we share considerations in the policy statement for the varied levels of alternative decision-making support for youth with IDD and resources to help pediatricians, families and those caring for this population.
Healio:What are the decisions that need to be made during transition planning for youth with IDD, and what is the pediatrician’s role?
Turchi: Ideally, the pediatrician’s role is to initiate transition planning early on and support youth and families during the process. Transition planning should start between the ages of 12 and 14 years. Having a transition policy in the office normalizes and prepares youth and caregivers for the journey.
Transitioning to adult-oriented systems is a natural part of the therapeutic relationship between pediatricians, youth and families. Being proactive and partnering prevents families from feeling like they are “falling off a cliff.”
This partnership between the youth, caregivers, community partners and pediatrician requires considering alternative decision-making support for youth with IDD. The process should honor the youth’s human rights and dignity. A key tenet in the statement is fostering the least restrictive alternative for decision-making for youth with IDD, promoting their autonomy and engaging youth at the inception of transition planning. Decisions regarding education, employment/vocational planning, financial independence and housing are also discussed in the transition process. Pediatricians play a critical role in customizing decisions based on the youth with IDD’s disability, supporting and advocating for them throughout the transition process.
Healio: Why should transition planning for patients with IDD begin between the age of 12 and 14 years?
Turchi: Initiating transition planning for youth with IDD at aged 12 to 14 is paramount since it takes time to ensure a successful transition considering all the facets that need to be addressed, including education and the individualized education program. What is their educational transition plan, and will they extend high school? Health care is another area: Who will be their adult health care team?
Financial independence also needs to be considered, including where the patient will live.
Youth are presumed to have the capacity to make decisions until proven otherwise. To address these issues, once the youth reaches the age of majority, pediatricians should consider the least restrictive alternative to decision-making and the spectrum of decision-making capacity of the youth. Addressing transition planning for youth with IDD requires care integration across multiple systems/stakeholders and assesses the goals of the youth and family in this collaborative process.
Healio: How is transition planning different for youth without IDD?
Turchi: Transition planning for all youth incorporates considerations in the areas of health care, education, employment, housing and independent/supportive living, recreation and finance — where the least restrictive alternative to decision-making becomes essential. Once they reach the age of maturity, pediatricians assess the youth’s capacity and where they are on the continuum of decision-making.
As we discussed in the statement, this spans from fully autonomous decision-making, supported decision-making, medical proxy decision-making, power of attorney, or establishing legal guardianship arrangements/fully substituted decision-making. Tailoring this assessment to each youth’s needs should be the approach. Youth without IDD might have capacity for more autonomous decision-making and require less support than youth with IDD.
The goal is to foster the best quality of life and independence that is safe for the youth.
Healio: Are there misconceptions about transition planning for youth with IDD?
Turchi: One misconception is that all youth with IDD would need guardianship or fully substituted decision-making. Instead, pediatricians can promote and support autonomy accounting for the youth's intellectual or developmental ability to express preferences, understand decisions and assess what support they may need in decision-making — if any.
A second misconception is that youth are not part of the team when making these decisions — quite the contrary, youth should be central in this process. They are integral in the approach to care integration and their perspectives and goals should be considered and embraced.
The policy statement shares the framework for seven steps to supportive decision-making underscored by the principles of commitment, organization and the iterative nature of this process. The pediatrician should assess and reassess the youth with IDD to ensure the approach is tailored to their specific needs.
Key takeaways from the policy statement for pediatricians, include:
- start the transition process between the ages of 12 and 14 years;
- maintain respect for human dignity and human rights for youth;
- consider the spectrum of supportive decision-making and the options available that promote autonomy and self-determination in decision-making for youth;
- identify the least restrictive alternative for decision-making for youth with IDD informed by the assessment, screening and discussion with youth;
- plan for the process of alternative decision-making and other support;
- building capacity for decision-making should be considered during the standard timeline and practice guidelines of health care transition planning; and
- be aware of local and state laws in this area.
The policy statement provides many resources and tools for pediatricians, including legal terms and a framework for approaching supportive decision-making for youth with IDD. Pediatricians should work with many stakeholders, including youth, family, community partners such as disability rights advocates, and medical-legal partnerships when needed.
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