AAP Encourages Minors to Participate in Medical Decisions

Our colleagues at the American Academy of Pediatrics (AAP) recently released an updated policy statement about informed consent for medical procedures. This update, the first since 1995, was also the subject of an explanatory article in The New York Times. The AAP policy goes into great detail regarding not just parental informed consent, but also assent by minors. Legally, all patients must be provided with enough information about medical conditions and procedures in order for them to agree to undergo any treatments. Children, however, are under the care of their parents, who are the ones providing the consent. That’s where assent comes into play. Even though children (anyone under 18) can’t legally make their own medical decisions, it’s still considered best practice to explain as much as possible to them in age-appropriate language, and to allow their voice to be heard in the decision-making process.

We’ve always taken student participation very seriously here at The Yellin Center, and we’re thrilled to know that the medical community is continuing to advocate for including children and teens in the decision-making process. Allowing children and teens the opportunity to become actively engaged in the conversation about their healthcare allows them to practice these decision-making skills safely for later on, with the understanding that parents and doctors ultimately (and legally) have the final say. Even more importantly, the AAP notes that letting kids and teens “in the loop” – helping them understand everything that’s going on – can promote empowerment and compliance with treatment.

Even though this policy statement was released by medical professionals, the sentiment translates well right down to the classroom level, and it’s something many teachers are starting to embrace. When kids understand why they’re being asked to do certain tasks, or learn certain concepts, they can develop an appreciation for their time in school. Similarly, many students can benefit from knowledge of how all brains work differently and what strategies might help them learn best, just like a doctor may explain to a child why she has to get her tetanus booster. It could make that shot a little less painful, and that classroom activity a little more worthwhile, from the child’s perspective.

New Pediatric Concussion Guidelines

Watching the amazing players on the World Cup teams, we suspect that the high level of play and the drama of many of the games will help make soccer more popular here in the U.S., especially among young people. But we can't help but notice the frequent and often traumatic contact between the players' heads and the ball and the lack of any sort of protective headgear. Parents are understandably concerned about this.

We were particularly interested, therefore, when we learned of the release last week of the first comprehensive pediatric concussion guidelines from pediatric emergency medicine researchers at the Children's Hospital of Eastern Ontario (CHEO) together with the Ontario Neurotrauma Foundation (ONF). The guidelines were developed by an expert panel including over 30 members across Canada and the United States, and included representation from the full spectrum of pediatric health disciplines (emergency medicine, family practitioners, neurologists, rehabilitation professionals, etc.) which worked for over two years and reviewed more than 4,000 academic papers.

"These are the first comprehensive pediatric guidelines that we're aware of; they reflect the very best available evidence today," said Dr. Roger Zemek, who led the panel. "It was fascinating to see how recommendations have changed over time. Years ago, children were told to 'rest' after concussion, which means something entirely different today with the onset of technology – now, rest also includes a break from screen time."

The guidelines include numerous tools and instructions for parents, schools, physicians, and coaches. For example, the guidelines provide a pocket tool to be used by a coach or parent at the sideline to recognize concussion and offer advice on when to remove kids from play and when to seek emergent medical attention. For the emergency department physician, algorithms are provided to guide the decision whether or not to obtain CT scans, and examples of written discharge handouts for patients and families are included. For family physicians and nurse practitioners in the community, the guidelines provide recommendations for ongoing symptom management and decision tools to help navigate 'return-to-learn' and 'return-to-play'. For school boards, the guidelines provide an example of a policy statement regarding pediatric concussion.

We have long been concerned about the impact of concussions on learning  It is encouraging to see the expertise of so many researchers and clinical physicians come together to offer practical guidelines that reflect the best current knowledge. 

Related Services

Both the Individuals with Disabilities Education Act (IDEA) and Section 504 of the Rehabilitation Act of 1973 (Section 504), the two federal laws that families rely upon when their children need help in school because of learning or other disabilities, mandate that children be provided with "special education and related services." We've written before about both of these laws and how they work, but our focus here is on the related services that both laws require schools to provide for students.


What are related services? The IDEA defines such services as:

"...transportation, and such developmental, corrective, and other supportive services (including speech-language pathology and audiology services, interpreting services, psychological services, physical and occupational therapy, recreation, including therapeutic recreation, social work services, school nurse services designed to enable a child with a disability to receive a free appropriate public education as described in the individualized education program of the child, counseling services, including rehabilitation counseling, orientation and mobility services, and medical services, except that such medical services shall be for diagnostic and evaluation purposes only) as may be required to assist a child with a disability to benefit from special education, and includes the early identification and assessment of disabling conditions in children.

The IDEA specifically notes that related services do not  include a medical device that is surgically implanted, or the replacement of such device. These devices can include a cochlear implant for students with hearing loss or an insulin pump for students with diabetes. Section 504 refers to "related services" without such an extensive definition, but districts generally apply the same definitions as they do to IDEA services.

Let's look at each of these services and see how they might apply to your child.

Transportation above and beyond regular bus service provided for all children may include bus service to and from school in a regular bus, or service in a bus with a bus aide, or transportation to school related activities. For students who have been placed by their district or parents in private special education schools, this can include transportation beyond the distances generally allowable to other students. Note that special transportation services must be specifically provided for in a student's IEP or 504 Plan; such service is not automatic.

Speech-language services include a wide variety of services provided by a licensed speech and language pathologist. These services are generally provided in small groups, but can be individual. They go beyond correcting difficulties with articulation and can be very helpful to students with expressive language problems of all kinds. Note that the IEP or 504 Plan needs to specify the frequency and duration of such services and the student-therapist ratio. In an IEP this can look like: "Student will be provided with speech-language services three periods of 45 minutes per week in 5:1 setting (ie: one speech therapist working with a group of five students)." Usually, the smaller the group, the more intensive the services provided.

Audiology, interpreting, and orientation and mobility services are provided to students with hearing and/or vision difficulties or blindness.

Occupational therapy is often provided to students with graphomotor (handwriting) issues and can assist these students with both handwriting and keyboarding.

Physical therapy helps students with mobility, balance, and movement difficulties manage their movements around the school. Note that these services, as well as the other services discussed, all must be specified in the IEP or 504 Plan as to frequency, ratio, and duration.

Other related services that can be included in an IEP or 504 Plan can include counseling, social work, and psychological services, all of which can be provided to any student who needs them. Medical services can also be provided, but are limited to diagnostic services. This distinction between educational and medical services is consistent with the focus of the IDEA on providing only those services which help as student to obtain a benefit from his or her education.