Tag: medical transition

Parents, Navigate Adapted Physical Education, IEPs, and 504 Plans

Posted on by Nicol Walsh

Physical Education (PE) is part of school for all students and may be particularly important for your student with a disability. What are the ways in which PE (general curriculum or Adapted PE) can improve their quality of life, now and into their adult years? This short list may give you ideas for your student’s IEP or 504 plan, and to discuss with your student for them to bring to a meeting with the IEP/504 team.

Overview

  • Physical Education (PE) can be adapted in four main ways to support students with disabilities.
  • Federal and state law protects a student with disability’s rights to access (be taught) PE. Adapted PE can be provided as a special education service in a student’s Individualized Education Program (IEP). It can also be included in a Section 504 plan.
  • Adapted PE can be useful for post-high school transition plans
  • Changes in WA State regulations mean that more teachers will qualify to design and teach Adapted Physical Education. These regulations are in effect as of May 1, 2024.
  • The Updated Guidance on Adapted Physical Education from the Washington Office of Superintendent of Public Instruction (OSPI) quoted in this article gives more information about Adaptive PE and how it fits into special education in WA State. Download or read Updated Guidance on Adapted Physical Education.

Introduction

Physical Education (PE) Classes teach students to care for their body and develop physical, mental, and emotional skills that include:

  • Motor skills (training to use muscles for a specific task, such as swinging a baseball bat to hit a ball, or running very hard in a race)
  • Physical fitness (keeping healthy and strong by exercising the body)
  • Social-emotional skills, teamwork, social play skills
  • Skills for athletics like team sports like soccer or basketball or individual athletics like gymnastics or dance
  • Skills for recreation like biking, swimming, hiking, throwing frisbees,

How Adapted PE works:

Access or accessible means how easy it is to do, to get, or understand something.

There are four main areas where adjusting or changing the general PE curriculum (school courses) may help students with disabilities access PE. Some of these changes will benefit ALL students using the general PE curriculum.

  • The physical space can be adjusted to work well for all students:
  • The size of the space and the number of other students can affect how accessible the PE class is for some students
  • Lighting, sound, and what someone can see may all affect comfort in a class.. Making thoughtful changes to these things can make a PE class more accessible.
  • Teaching: the teacher gathers information about individual students to ensure they use teaching methods accessible to everyone. This might mean spoken instructions, movements, pictures, written words, showing how to do something, or videos.
  • Equipment: depending on a student’s disability, some students might need PE equipment to move more slowly, be bigger or smaller, more tactile (easier to feel), be easier to see, and similar changes.
  • Rules: to make sure PE is inclusive, rules of the game may need to be added or taken away.

The information-gathering process above is a good place for you and your student to provide information about your student’s supports such as doctors, therapists, and interests outside of school that might be supported by Adapted PE. This information can be offered to the entire IEP/504 team, to give a well-rounded view of your student. You might want to review PAVE’s articles for students in the References section, below. It’s a good start for your student to self-advocate and practice self-direction.

Examples of Adapted PE

The point of Adapted PE is to change the general PE curriculum so that it is accessible for all students based on their individual strengths and needs. How it looks varies a lot depending on the student, but here are a few examples of Adapted PE in action:

  • A third grader with autism spectrum disorder uses a play script on her communication device to invite other students to play tag with her.
  • A high-school senior with Down syndrome is introduced to adult recreation opportunities in his community so he can continue building healthy habits beyond graduation.
  • A seventh grader with Cerebral Palsy attends general PE class. The Adapted PE teacher, general PE teacher, and the physical therapist collaborate to create an exercise plan to strengthen the student’s legs while using their gait trainer (walker).

Adapted Physical Education teachers are trained to make changes to the general education PE curriculum to make it accessible to students with disabilities.

IEPs can include Adapted PE as a service

Eligibility for an Individualized Education Program (IEP) uses an evaluation. The process helps to decide whether a student has a disability, whether the disability has a significant impact on (really affects) learning, and whether the student needs Specially Designed Instruction (SDI) and/or related services to access a Free Appropriate Public Education (FAPE). FAPE is the right of any student, ages 3-21, who is eligible for school-based services delivered through an IEP.

If a student’s access to PE really affects learning and the student needs the school’s PE course to be individualized, then Adapted PE can be given as an IEP service. IEP teams discuss how Specially Designed Instruction (SDI) is delivered for each individual student.

When Adapted PE is part of the IEP, there is a range of options for placement. A student might be in a general PE class, with or without accommodations. Additional aids, services, and modifications may be added depending on what the student needs. Get more details in the Updated Guidance on Adapted Physical Education.

This is a great opportunity for a student to share their goals and needs about physical activities with their IEP team. The topic might be a way to interest your student in IEP meetings even before the required age for planning their life after high school. See the Resources section below for information about students attending or leading their IEP team.

Post-High School Transition and Adapted PE

Physical education and/or Adapted PE can play a key role in students’ post-high school transition plans if, as young adults, they are to continue to maintain healthy, active lives.

If your student receives Adapted PE in their IEP or 504 plan, you and their transition team can help them identify the sports and recreation activities, entertainments, and any after-school programs they enjoy or want to join. Students can plan to continue favorite school PE activities out in the community and explore new options. The transition period is also an ideal time for students to create their own fitness plans or exercise routines that they can do independently after high school. For these aspects of your student’s transition planning, their PE/Adapted PE teacher can be invited to join the transition team, if they are not already a part of it.

Adapted PE teachers and physical and occupational therapists, if part of your student’s team, can collaborate on functional living skills related to physical activities and recreation. Some examples might include using a locker room, showing ID or membership at a reception desk, registering for programs or classes, and care and proper use of their own sports equipment at home. Frequently Asked Questions About Adapted Physical Education (Society of Health and Physical Educators (SHAPE))

Because Health is also a part of the PE core credit, students might consider requesting that health transition be added as a part of their transition planning.  This transition impacts students with disabilities far quicker than many families realize. When the student turns 18, because of HIPAA, students are completely in charge of their own healthcare decisions, healthcare coverage, and payment – whether they are ready or not. It is not what is typically taught in health class, but the information is available to be incorporated into a transition plan or adapted curriculum plan through sites such as Got Transition and  Center for Transition to Adult Health Care for Youth with Disabilities . These comprehensive websites provide information and multiple options for youth and teachers to explore and adapt to the needs of any student, whether they were impacted by disability or not. 

Two articles from PAVE provide information for families and students on steps they can do themselves to get ready for that transition and how to start developing the medical awareness and self-determination skills early: Insurance in Health Transition and I Have to Sign What? Healthcare in Transition.

Rules changed and removed some difficulties with getting Adapted PE

Until spring of 2024, Adapted PE was not recognized as a separate subject matter area or specialty that the state would endorse (add to the training listed on a teacher’s professional certificate). This meant a shortage of teachers who could design Adapted PE for students. It made it difficult for some students with disability in Washington State to get SDI in physical education.

As of May 1, 2024, qualifying[1] teachers in Washington State can be trained for and receive a specialty endorsement in Adapted Physical Education. The endorsement shows the teacher has specific skills and knowledge in both PE Learning Standards and special education competencies. As more teachers are taught this specialty, it will be easier to find teachers with Adapted PE training in Washington State.

The OSPI Updated Guidance says that in addition to teachers with an Adapted PE endorsement, SDI for physical education can be provided by “any other appropriately qualified special education endorsed teacher, or an “appropriately qualified Educational Staff Associate (ESA) such as an Occupational Therapist (OT) or a Physical Therapist (PT).”

Summary:

  • Physical Education (PE) is an important part of school. Students with disabilities have the right to be taught physical education.
  • Adapted Physical Education (APE) is when the general PE curriculum is changed or adjusted to accommodate the individualized needs of a student with disability.
  • Adapted PE can be included in an Individualized Education Plan or a Section 504 plan.
  • If a student needs Adapted PE, it’s important to include someone on the IEP team who is qualified to design individualized adapted PE, as well as the teacher or other school personnel who will be teaching the student.
  • Only certain qualified education professionals can design and supervise other educators and school staff teaching Adapted PE. Changes in WA State rules in 2024 allow more education professionals to qualify in Adapted PE.

Resources:

A previous version of this article was based on information provided by two experts in the field of Adapted Physical Education, Toni Bader, and Lauren Wood, who are Adapted Physical Education teachers in the Seattle area:

  • Toni Bader, M.Ed., CAPE – SHAPE Washington, Adapted Physical Education, Seattle Public Schools (tonibader24@hotmail.com)
  • Lauren Wood, NBCT, Adapted Physical Education Teacher, Highline Public Schools, and SHAPE Washington Board Member (lauren.wood@highlineschools.org)

[1] “Certificated teachers who hold any special education endorsement or a Health/Fitness endorsement are eligible to add the APE specialty endorsement to their certificate”  –OSPI Updated Guidance

How to Have Good Communication with Your Child or Youth’s Doctor 

Posted on by Nicol Walsh

When your child is impacted by chronic healthcare needs or disability it can be very important to learn to talk with the healthcare professionals that work with your child. Having a relationship that allows for respect and understanding makes it easier for families, the patient (if they are older), and the doctor or specialist to communicate concerns and changes.  

This article covers how preparation for a medical visit helps with communication, three key Communication Actions to follow with health providers, removing communication barriers and issues, communication styles, and introductions to youth health care transition and medical homes. 

A Brief Overview 

  • Respectful, two-way communication is a baseline for your child or youth’s best medical care. 
  • Preparing yourself (and your child or youth) for a medical visit helps get the most from a conversation with your medical professional and supports successful communication for the future. 
  • While there may be times when there are differences in ideas or understanding between you and your child’s medical team, communicating based on your knowledge as a parent can help the team gain a broader perspective. 
    The good news is that most communication difficulties can be solved! This article has many examples of how to do it. 
  • The way parents communicate can help get the attention of your child’s medical provider. 
  • Medical Homes are designed to make communication and working as a team easier. This article includes a brief explanation of medical homes and links to more information. 
  • Children reach an age when they are allowed, by law, to make medical decisions for themselves. This article introduces the concept of health care transition and gives resources for more information on this important topic. 

Introduction

When your child is impacted by chronic healthcare needs or disability it can be very important to learn to talk with the healthcare professionals that work with your child. Having a relationship that allows for respect and understanding makes it easier for families, the patient (if they are older), and the doctor or specialist to communicate concerns and changes.  

Preparation Helps 

Knowing what might happen during a medical visit is one way to prepare yourself to be a good communicator. Having a general idea of what a doctor or other health care provider wants to learn during an appointment is also a good first step. 

The US Department of Health and Human Services has web pages for parents called “Make the Most of Your Child’s Visit to the Doctor”. They are on the MyHealthFinder site on the “Regular Checkups” page. 

These resources are geared to parents of children without disabilities, but since accidents, sickness, developmental or behavioral health problems can occur at many points in a child’s life, they may be helpful as a place to begin. Each set of web pages has an age range, and the information is specifically for parents of children of those ages. 

  • The “Take Action” page in each two-page section has tips on preparing for the visit, including questions the nurse or doctor might ask, and questions you might wish to discuss.  
  • The examples include items you might not have thought about, so they can help you think about discussing a broad range of topics during the visit. 

Communication difficulties (barriers) and how to solve them 

Sometimes parents may find it difficult to speak up with doctors, nurses, and other health care providers because: 

  • Your child may have been born with a medical condition, and you as parents have been viewing health care providers as “the experts” since your child’s birth. 
  • If you, as a parent, grew up with the custom of taking a “professional’s” advice even if you have questions or you don’t believe their advice will work for your child. 
  • You don’t know enough about your child’s development or condition to know if the proposed treatment is a good idea for your child. 
  • You may be nervous about challenging a health care provider’s advice or treatment plan because you worry it might affect your child’s care. 

Dr. Rachel Bies is a pediatrician in Minnesota, and she wrote about parents not feeling heard in a blog post. She writes there “is a balance between what the provider feels is in the best medical interest of the child and what the parent feels is in the best interest of their child and family. We share the common goal of the health of the child but may have different ideas about how to achieve that goal.”  (emphasis added). 

If a parent does not feel they are being heard by their child’s pediatrician or health care provider, she asks parents to think about what might be causing communication barriers. Some common barriers in medical settings include: 

  • Language differences 
  • Too much use of medical terminology 
  • Time limits on an appointment 
  • Cultural differences 
  • Different expectations for the visit 

To get around these barriers, you can take some or all these actions: 

  • You can ask for an interpreter, and for medical information sheets to be translated or available in your preferred language. 
  • You can bring along another person to take notes and ask questions you forget to ask. (Dr. Bies mentions that people tend to only remember about 50% of discussions in a healthcare visit). You can expect an after-visit summary or a handout to help remember important information. 
  • Ask for medical terminology be explained. 
  • You can tell the health care provider about any cultural practices which are related to your child’s health or care. 
  • Ask who you should call or email if you have follow-up questions. 
  • If time is limited, are there ways to discuss less urgent matters with an appropriate member of the medical team?  
  • For instance, some practices and clinics have message phone lines or emails so patients or parents and guardians can ask questions and get answers from a team member less pressed for time, such as a nurse or nurse practitioner. Doctors, and particularly specialists, may be the most tightly scheduled staff in a practice or clinic. Another option may be to book a telehealth follow-up appointment for your questions, if covered on your health plan. 
  • To help make your expectations clear, let the health care provider or team know up front, if possible. 
  • Almost all advice about preparing for a medical appointment tells patients (or parents) to bring a list of current questions and concerns. Some practices have a document that patients or parents fill out in the waiting room “What brings you here today?” Rather than trying to transfer your list of questions to the document, bring a copy of your questions and a paper clip, and when you turn the form in, ask for your list to be stapled to the form so all the information gets added to your child’s record. 

Even when there are no obvious communication barriers, you can ask yourself: 

  • “Are my opinions and knowledge of day-to-day changes being noted? What does the health care provider say about them?” 
  • In situations where you believe there is a need for action, ask yourself “Major changes are happening with my child, and I have brought them to the attention of the health care provider or team. Has anyone in the practice (clinic, hospital) been providing resources to help with these changes? Have I or my child been referred to additional health care providers or resources?” 

If you can’t answer “yes” to these questions, it might be time to look for a different health care provider.  
 

Most people are somewhat limited in their choice of providers because of their particular health insurance. This is true whether you are on publicly funded health plans like Medicaid (Apple Health and CHIP) or TRICARE, private insurance through an employer, or Affordable Care Act (ACA or Obamacare) plans through Washington Healthplanfinder. 

Another limitation may be the limited choice of health care providers in your area.  

These are two important reasons to first try different ways to communicate with your child’s health care team, if your first attempts do not seem to work. 

Three Key Communications Actions and Communication Styles 

In a short YouTube video from Seattle Children’s Hospital, Lisa Peters, MN, RN talks about doctor-parent communication about pain management. The ideas in the video work for any situation where parents need to communicate with health care providers. 

The three key Communication Actions are: 

  1. Speak Up 
  2. Partner 
  3. Advocate 

Ms. Peters points out that “at any time, you have the right to stop and make a change in [your child’s] plan if it’s not working for your child.” 

PAVE’s article “Self-Advocacy: Becoming an Active Member in Your Community”  is helpful for anyone who wishes to communicate in ways that result in partnering with healthcare professionals while advocating for their child. 

Here are some tips from the article. The wording has been changed a bit to make it more about parents, children, and health care settings. 

  • Learn about the topic you are speaking about (your child’s condition or disability). 
  • Actively listen to the other person and ask if you don’t understand something (like a medical term).
  • Try to see the other person’s point of view. Most health care providers want to partner with patients and parents. You have the right to ask why they recommend a particular plan or treatment, and you can also explain your point of view: 
    “This plan means Tommy needs to be in the hospital for multiple procedures. Can you explain a bit more why you want the procedures to happen very close together?” 
  • Express your feelings clearly, calmly, and assertively, without being aggressive or disrespectful. 
  • What is an assertive communication style? A page at Nemours TeensHealth offers many easy-to-understand tips, and examples of how to achieve an assertive style of communication and advocacy for both teens and adults. They write “Assertiveness is a healthy way of communicating. It’s the ability to speak up for ourselves in a way that is honest and respectful.” (emphasis added). 

Medical Homes can help with communication 

 A medical home is a communication hub designed to focus on providing better medical communication with the patient’s family and medical and school medical IEP providers. The hub is a central communication manager where all members involved in the patient’s case can call to update medications, medical notes, upcoming appointments, and the family can call to contact doctors in an emergency or leave questions. The parent or guardian of the patient can select the hub. Possible hubs could be a primary care provider, a specialist, a medical case manager, DDA case manager or the parent or guardian. PAVE has a video and article which helps to define a medical home. The article offers questions to help you decide if your family may need to create a medical home. Washington State Medical Home Partnership Project has a website full of resources to help with medical homes, including The ABC’s of Medical Homes. 

Health Care Transitions 

In Washington State, children reach the age of majority for medical care at 18, which means they can get healthcare services in Washington State without an adult’s permission. It’s also a common age to move from the care of a pediatrician to a medical provider who treats adults. Preparing for this change is called “transition for medical care.” Just like the similar process for life after high school, “transition for medical care” begins much earlier than 18, and usually involves help from parents or guardians and the current medical providers. This “transition” is especially important to youth and young adults with a disability, as part of their preparation to take charge of their life as an adult.  

Important to know: the “age of medical majority” for teens is not always age 18. For certain types of medical treatment or testing, children aged 13 through 17 “can make their own decision to get birth control, seek mental health treatment, and get tested for sexually transmitted infections (STIs) and more” based on Washington State’s privacy laws. Adults 18 and over who are under legal situations like guardianship may not always be able to make healthcare decisions for themselves.  

Information on healthcare permissions, privacy, guardianship and many other legal topics can be found at WashingtonLawHelp.org. 

Many parents prepare their children to transition to adult healthcare when they are small, just by preparing them for medical appointments. Imaginative play of the child being the doctor and the parent being the patient re-enacting the scene of a doctor’s visit starts to prepare children for how to interact with healthcare providers. As the child gets older, we talk to them prior to a doctor’s visit about why we are going and ask if they have any questions we are building on the foundation.  

Teens are encouraged to learn about their medical and other allergies, what their health or disability condition is, what medications they take and the dosages. Gottransition.org has resources for parents outlining the stages and goals of the transition process. All stages and goals are flexible based on each youth’s ability levels, healthcare needs and personal needs, this is a guideline. Gottransition.org has resources to assist youth in discussing their concerns about transitioning to adult health care  with their doctor and an electronic means of keeping track of their health ID card. 

While transitioning from pediatric health care to adult health care, teenagers are developing their advocacy skills with their parents and their peers. Now, teenagers are having to learn how to advocate for themselves in an environment that can be uncomfortable at times. A short video presented by the University of Michigan’s website Michigan Medicine is Teen Self-Advocacy: How To Be Your Own Healthcare Advocate. It provides tips on self-advocacy in the doctor’s office. Teens may find electronic resources useful advocacy tools to plan their doctor’s visits.  

The Academy of American Pediatrics provides a tool to assist with preparing for a doctor’s appointment, Well Visit Planner and Patient Question Builder app. (Scroll down to the middle of the page.) 

Before using any phone or computer app, AAP advises that users check that no information is collected or saved, and the app does not sell any information to third parties.  

Parents can struggle with letting go of control over the health care of a youth with complex medical needs or a disability. Managing their child’s health care needs has been a major factor in their lives for as long as they can remember. This anxiety can create tension between teenagers and parents. Michigan Medicine presents a video showing a group of parents as they discuss their different parenting experiences through this transition period. Each experience is unique as each child is unique. Parents are learning to step back during doctor’s appointments and let their teenager speak to the doctor, asking questions about the doctor’s recommendations and ensuring that they understand the information presented. You may want to watch this video with your child who is transitioning to adult health care as a conversation starter about your feelings and their feelings about this transition period. 

A teenager needs to know their rights to privacy. A downloadable pdf from the Adolescent Health Initiative at Michigan Medicine outlines the privacy rights of a teenager with their healthcare professional. At all times patients are encouraged to talk to their medical professionals if they have any questions about confidentiality. Sharing this privacy document with your teenage child lets them know that you support their own healthcare communication and advocacy with their current and future health care providers.  

Health Information and Your Privacy is a resource to help adults and minors keep their privacy by having their insurance provider send any communications or documents  

Additional information on Health Care Transition