Holiday Survival Tips For Families with Special Healthcare Needs

A Brief Overview 

Every family experiences holidays and end-of-year transitions differently. This article provides a sampling of ideas for families with children experiencing special healthcare needs. If a child also experiences behavioral difficulties, you may wish to read Home for the Holidays: The Gift of Positive Behavior Support 

Here are some quick takeaways: 

  • Keep to your everyday schedule and routine as much as possible to minimize medical and behavioral impacts. 
  • Add fun with home-based holiday activities and traditions tailored to your family’s needs or select family or group activities which work with your child’s medical needs. 
  • Plan and save surprises too: Mix up the activities so children can help with some planning and enjoy a few surprises. 
  • Plan for health and safety if travel is on the schedule
  • Families need a village: Help is a present, but sometimes you must ask for what is on your list. 
  • Gratitude is a gift: Moments of thankfulness calm the mind. For additional stress-reducers, PAVE provides a practical gift: Self-Care Videos for Families Series. We also offer short videos to help everyone find calm (Try Hot Chocolate Breath!): Mindfulness Video Series

Full Article 

Decide Which Routines and Schedules Might Be “Holiday Flexible” 

Many children with disabilities rely on schedules, either as a coping strategy or for medical reasons. It is critical to keep your child on schedule during the holidays as much as possible. This may mean leaving an event early or arriving later to accommodate tube feedings or respiratory treatments. It may mean putting your child to bed on time, even at Aunt Sally’s midnight party.” -Susan Agrawal, complexchild.org 

If your family can accommodate a bit more flexibility, a “Holiday” sleep schedule with an extra hour of special family time before bed might add a fun holiday flavor. For others, sleeping in or staying in jammies longer than usual might create a relaxing holiday feel. Be sure to call out these relaxed rules as holiday specials so everyone understands they are temporary changes and part of the “break.” 
 
Add Fun 

Families might set aside, or add onto ordinary routines, to: 

  • Bake 
  • Sing 
  • Read special stories 
  • Play games together 

On its website, WestEd.org, a California non-profit, provides a guidebook for families staying home for health and safety reasons: Caring for Young Children While Sheltering in Place.  Activity videos (story-based yoga, for example), easy-to-learn songs, arts-and-crafts, sensory play, and cooking with kids are among offerings for developmentally appropriate activities.  

Understanding your child’s healthcare needs and vulnerabilities can help with deciding which activities are right for your family.  

  • Drive-through light shows, and streaming concerts, theater, and holiday events are options in some areas that won’t expose a medically vulnerable child to other people’s germs. 
  • If weather and your family’s needs permit, outdoor holiday activities with groups of people are less likely to spread illness as we all learned during the height of the COVID-19 pandemic. Think of tree lightings, caroling, snow-sculpture or snowman-making events, and of course winter sports, if appropriate, for your child and family. 
  • One tradition that has always been virtual is the NORAD Santa tracker, which keeps tabs on Santa’s travel on Christmas Eve and has kid-centered games and songs. 

Finding the “just-right” amount of holiday celebrating can be tricky, so keep the Three Bears/Goldilocks principle in mind. For children who understand this theme, families can use the classic story to talk about how everyone makes choices about what is the “just right” amount of celebrating, eating, screen time, sleeping. 

Plan and Save Surprises Too 

A theme for the year can add a new flavor to family traditions. Here are some suggested themes: 

  • How I celebrated when I was a kid. 
  • Christmas 1821, 1721, etc. 
  • Holiday food, decorations, stories, music, etc. from another culture. 

The family can research the theme together to come up with ideas and activities. A theme night might include a chance for each family member to share something or lead an activity. On story night, each person might share a favorite holiday memory or a made-up story. If extended family want to take part, a video conference might be an added element to the evening. 

Adults can set aside a few ideas to save for in-the-moment surprises to sprinkle in. A prize, special treat, well-told joke, customized family game, or a surprise “guest” on the phone are a few ideas to plan out in advance. 

Travel 

For families choosing to travel, bags with medication and equipment still need to include masks, hand sanitizer, and sanitizing wipes. Even with mask mandates mostly a thing of the past, it’s sensible to have these on hand for crowded airports and planes and visiting more vulnerable, elderly relatives.  

If plans include planes and trains, be sure to let agents and attendants know about a family member’s special accommodation needs.  

  • Washington travelers can make preflight preparations from Sea-Tac Airport by sending an email to the Sea-Tac Airport customer service.  
  • The phone number for the Spokane Airport Administrative Offices: (509) 455-6455. Amtrak provides a range of Accessible Travel Services
  • TSA Cares is designed to aid travelers with disabilities with TSA screening procedures. Call them at 855-787-2227 (8 AM to 11 PM Eastern Time M-F, and 9 AM-8 PM Eastern weekends and holidays). 

Sugary treats might impact planning for children with diabetes: An insulin pump might help during the temporary splurges so a child can enjoy the holiday without feeling too different or overwhelmed. 

Visions of sugar plums might need a different flavor for children with specific allergies or food sensitivities. Being prepared with substitutions may prevent a child from feeling left out. If someone else is doing the cooking, be sure to share about any severe allergies to make sure utensils and mixing containers do not get cross-contaminated. 

Families Need a Village 

No holiday is ever perfect, and unrealistic expectations can cause a celebration to sour. Communicating with relatives and friends can help: 

  • Make a “Gift Wish List” for your child with special healthcare needs to let relatives and friends know what gifts will be good for your child based on what they might need to avoid and what they can use and enjoy. Many large retailers (Target and Kohls, for example) carry lines of adaptive clothing and sensory products and toys. 
  • Ask for understanding and support from family and friends to reinforce positive messages and realistic expectations. Saying no might be important, so choose what works and toss the guilt if the family needs to pass on a tradition or an invitation. Or use the “No, but” strategy and offer an alternative such as a different time or activity. 
  • As always, remember to plan self-care, whether it is a soak in the tub, a special movie with popcorn, or simply a few pauses for five steady breaths. “Putting your own oxygen mask on first” will make you a stronger caregiver.  

Gratitude is a Gift 

Gratitude helps the mind escape from stress-thinking and move toward feelings of peacefulness and grace. Taking a few moments to mindfully reflect on something that brings joy, beauty, love, sweetness—anything that feels positive—can create a sense of ease. An agency called MindWise Innovations provides tips to practice gratitude during the holidays, including this one: Make a list of things you have instead of things you want.  

For additional stress-reducers, PAVE provides a practical gift: Self-Care Videos for Families Series. We also offer short videos to help everyone find calm (Try Hot Chocolate Breath!): Mindfulness Video Series

Susan Agrawal, writing on complexchild.org, reminds us “No holiday is ever going to turn out like you want it to, even if you have the most perfect storybook family in existence. Don’t expect perfection or anything even close to perfection. For some families, getting through the holidays may be as much as you can expect. For other families, changing holiday traditions may make the season not feel the same. That’s OK. Instead, try to find the blessings in the season, whether that means seeing family members or celebrating your child’s inch stones.”  

Additional Holiday Resources 

Giving the Gift of Sensory-Regulation: Supporting a Happy Holiday Season for All 

Home for the Holidays: The Gift of Positive Behavior Support 
 
https://wapave.org/holidays-can-hurt-when-trauma-is-present/10 Tips to Surviving the Holidays When Your Child is Medically Complex or Has a Disability 

Related 
 
Respiratory Disease Health Advisory 
 
Explore Adaptive Play with Your Child 

Step-By-Step Guide to Requesting Accommodations on SAT and ACT Exams

The transition from high school to college can be a daunting experience for any teenager. Part of the transition process is preparing for and taking the entrance exams for college. If the student is receiving accommodations in school, they may qualify to receive special accommodations while taking a college entrance exam.

The ACT and College Board Services for Students with Disabilities (SSD) do not approve accommodations for all college entrance exams. Contact your school, college, or testing center for the CLEP and ACCUPLACER tests. Students with documented disabilities may request accommodations on PSAT-related assessments with the help of their school counselor.

Differences Between SAT and ACT Exams

Most universities accept both SAT and ACT and the length of both tests is approximately the same.  ACT has more questions in that same period, so fast workers may prefer it.  However, the best one for a student is the one they feel best about, so trying sections of both before choosing which one to study for is recommended by most test prep professionals. Both ACT and SAT have free practice sections available.

SATACT
Reading (65 min, 52 Questions)Reading (35 min, 35 Questions)
Writing (35 min, 44 Questions)English (45 min, 75 Questions)
Math (80 min, 58 Questions)Math (60 min, 60 Questions)
Optional essay (50 min)Science (35 min, 40 Questions)
Scored 400-1600Optional essay (30 min)
Scored 1-36

A student must have approval from the College Board SSD (for the SAT) or ACT to use accommodations on an exam. If a student uses extended test time or other accommodations without prior approval, their test results will be invalid.

The process of requesting accommodations varies depending on the exam. These are the steps to request accommodations on SAT and ACT college entrance exams:

Step 1: Document the need for accommodations.

The student must have a documented disability. Documentation can be a current psycho-educational evaluation or a report from a doctor. The type of documentation depends on the student’s circumstances. The disability must impact the student’s ability to participate in the college entrance exams. If the student is requesting a specific accommodation, documentation should demonstrate the difficulty the student has performing the related task. The College Board provides a disability documentation guideline and accommodation documentation guideline, as does the ACT. Doctor notes and Individualized Education Program (IEPs) or 504 plans may not be enough to validate a request for accommodations; you must provide supporting information, such as test scores. 

While students typically only receive accommodations if they have a documented disability, some (very few) students who have a temporary disability or special healthcare need can also be eligible. The request is different in these circumstances for those who wish to take the SAT exam and students are often urged to reregister for a date after they have healed. If the student cannot postpone their test, the request form for temporary assistance must be completed by a school official, student (if over 18) or parent, doctor, and teacher. Then, the form must be faxed or mailed to the College Board for processing.

Step 2: Allow plenty of time for processing.

It takes time to apply for accommodations, including a processing period of up to seven weeks after all required documentation has been submitted to the College Board SSD or ACT. If they request additional documentation, or if a request is resubmitted, approval can take an additional seven weeks. Start as early as possible before the exam date to allow enough time for processing, responding to a request for more documentation, and additional processing time. If the student will take the exam in the fall, they should begin the process in the spring to allow sufficient time for processing.

Step 3: Identify appropriate accommodations.

If the student has a formal education plan, review the current plan, and note accommodations listed throughout, especially (but not only) those the student uses during assessments. Read through recent medical evaluations, prescriptions, and records to ensure all accommodations have been included in the formal education plan, if the student has one, or to locate appropriate accommodations recommended by medical professionals. You may recognize some of the Possible Accommodations for SAT and ACT Entrance Exams.

Some accommodations may only be provided during certain sections of the exam, depending on the specific accommodation requested. For example, a student with dyscalculia may receive extended time during the math section of the exam but not for any other subject.

Step 4: Submit the request for accommodations.

The easiest way to request SAT accommodations is to go through your student’s school. If you choose to go through the school, the school’s Services for Students with Disabilities (SSD) Coordinator (Special Education Coordinator, Guidance/School Counselors, etc.) can go online to review the SAT Suite Accommodations and Supports Verification Checklist and submit the application. Having the coordinator submit the application will help streamline the process. Homeschooled students or those who choose not to go through the school may request accommodations on the SAT exam by printing the Student Eligibility Form and submitting all documentation by fax or postal mail.

Requesting accommodations for the ACT exam requires working with a school official who is a part of the IEP team. The accommodations requested should be similar to the accommodations currently being received in school and must be approved by ACT before the test. All requests, including appeals, must be submitted by the late registration deadline for the preferred test date. Homeschooled students may request accommodations on the ACT exam by creating an ACT account online and submitting the required documents electronically.

Step 5: Register for the college exam.

Once the student is approved for SAT accommodations, they will receive a Service for Students with Disability (SSD) number that must be included when registering for the test. The school’s SSD Coordinator should ensure all the correct accommodations are in place when it is time to take the college exam. Approved accommodations will remain in effect for one year after graduation from high school.

Additional Information

Section 504: A Plan for Equity, Access and Accommodations

A Brief Overview

  • Section 504 is part of the Rehabilitation Act of 1973, which is upheld by the U.S. Department of Education’s Office for Civil Rights.
  • Section 504 prohibits discrimination based on disability in any program or activity that receives federal funding. All Washington state public schools must comply with this federal law.
  • Every student with a disability is protected from discrimination under this law, including each student with a 504 Plan and each student with an Individualized Education Program (IEP).
  • Eligibility for Section 504 support at school is determined through evaluation. Washington’s Office of Superintendent of Public Instruction (OSPI) provides fact sheets in multiple languages that describe the evaluation process and state requirements.
  • Civil rights complaint options are described at the end of this article.

Full Article

A student with a disability is protected by multiple federal laws. One of them is the Rehabilitation Act of 1973, which is upheld by the U.S. Department of Education’s Office for Civil Rights. Section 504 is part of the Rehabilitation Act and provides key protections against disability discrimination.

To uphold a student’s civil rights under Section 504, schools provide accommodations and support to ensure that a student with a disability has what they need to access the opportunities provided to all students. That support is the essence of equity. Ensuring equity for students with disabilities is part of a school’s responsibility.

Students are protected in their access to academics, social engagement, extracurriculars, sports, events, and more—everything that is part of the school experience and school-sponsored activities.

Every student with a disability is protected from discrimination under this law, including each student with a 504 Plan and each student with an Individualized Education Program (IEP). Section 504 protects a person with disabilities throughout life and covers individuals in any public facility or program. A person can have a 504 Plan to support them in a vocational program, higher education, or in any location or service that receives federal funds.

All people with recognized disabilities also have protections under the Americans with Disabilities Act (ADA). Within a school, business, or other organization, the person responsible for upholding civil rights under these two laws might hold a title such as Section 504/ADA Compliance Officer.

TIP: If you have concern about civil rights being upheld within any organization, ask to speak with the person responsible for Section 504/ADA compliance. Ask for policies, practices, and complaint options in writing.

What counts as a disability under Section 504?

Section 504 does not specifically name disability conditions and life impacts in order to capture known and unknown conditions that could affect a person’s life in unique ways. In school, determination is made through evaluations that ask these questions:

  1. Does the student have an impairment?
  2. Does the impairment substantially limit one or more major life activities?

Washington’s Office of Superintendent of Public Instruction (OSPI) provides fact sheets in multiple languages that describe the evaluation process and state requirements. Included is this information about what Section 504 means for students:

“Major life activities are activities that are important to most people’s daily lives. Caring for oneself, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning, working, eating, sleeping, standing, bending, reading, concentrating, thinking, and communicating are some examples of major life activities.

“Major life activities also include major bodily functions, such as functions of the digestive, bowel, bladder, brain, circulatory, reproductive, neurological, or respiratory systems.

“Substantially limits should also be interpreted broadly. A student’s impairment does not need to prevent, or severely or significantly restrict, a major life activity to be substantially limiting.”

Pyramid of Rights: Students at the top have all these protections! 

Special Education Rights are protected by the Individuals with Disabilities Education Act (IDEA). Eligible students are served with an Individualized Education Program (IEP).

Civil Rights are protected by Section 504 of the Rehabilitation Act of 1973 and the Americans with Disabilities Act (ADA). Students with disabilities impacting a “major life activity” receive accommodations and individualized support as part of their IEP (if eligible) or through a Section 504 Plan.

General Education Rights are protected by Every Student Succeeds Act (ESSA). All children in the United States have the right to access free public education through age 21 or until they earn a high school diploma.

Does the student need a medical diagnosis?

A school cannot require a parent to provide a medical diagnosis to evaluate a student. However, a diagnosis can provide helpful information. The school could request a medical evaluation, at no cost to the parent, if medical information would support decision-making.

Note that a medical diagnosis does not automatically mean a student needs a 504 Plan. Doctors cannot prescribe a 504 plan—only the 504 team can make that decision. However, the 504 team must consider all information provided as part of its evaluation process.

Evaluations must disregard mitigating measures

A mitigating measure is a coping strategy that a person with a disability uses to eliminate or reduce the effects of an impairment. For example, a person who is deaf might read lips. A person with attention challenges might take medication. A person with dyslexia may read using audible books.

Because a person has adapted to their disability does not mean they give up the right to appropriate, individualized support. In its guidance, OSPI states:

“Mitigating measures cannot be considered when evaluating whether or not a student has a substantially limiting impairment.”

A school also cannot determine a student ineligible based on a condition that comes and goes. A student with a fluid illness (for example: bipolar disorder, Tourette’s Syndrome, or a gastrointestinal condition) may be eligible for Section 504 protections even though on some school days they function without any evidence of impairment. OSPI states:

“An impairment that is episodic or in remission remains a disability if, when in an active phase, this impairment substantially limits a major life activity.”

504 or IEP?

Eligibility for school-based services is determined through evaluation. Federal law that protects students in special education process is the Individuals with Disabilities Education Act (IDEA).

IDEA includes Child Find protections that require schools to evaluate a student if there is a reasonable suspicion that disability is impacting educational access. A student is evaluated in all areas of suspected disability to determine eligibility for services. If the student is found eligible, the evaluation provides key information about service needs.

Here’s what might happen after a student is evaluated:

  • A student is eligible for Section 504 protections but not an IEP. Data from the evaluation is used to build a Section 504 Plan for supporting the student with individualized accommodations and other needed supports.
  • A student is eligible for an IEP. The special education program includes goals that track progress toward learning in areas of specially designed instruction (SDI). Accommodations and supports that are protected by Section 504 are built into the IEP.
  • The school determines that the student does not have a disability or that a disability does not substantially limit educational activities. The student will not receive school-based services through an individualized plan or program.

Sometimes parents disagree with the school’s determination. Families have the right to request an Independent Educational Evaluation (IEE) at school district expense if they disagree with the methods, findings, or conclusions from a district evaluation. PAVE provides an article that describes that process and provides a sample letter for requesting an IEE.

Case example from federal court

A 2018 federal court ruling regarding a student with Crohn’s disease highlights one complaint process. Parents provided the school with information about their child’s diagnosis and requested an evaluation for services. Their request was denied. The Third Circuit Court found the school in violation of the student’s right to appropriate evaluation under the Child Find Mandate. The court also found that the school should have provided special education services, not only accommodations with a Section 504 Plan:

“In seeing Crohn’s as something requiring only a Section 504 accommodation, not IDEA special education, [the district] treated the disease as something discrete and isolated rather than the defining condition of [this student’s] life.” 

Crohn’s Disease is one example of a specific medical condition that might require a unique support plan. The Crohn’s and Colitis Foundation provides relevant information about Section 504 rights and suggestions for accommodations.

TIP: If someone you support has a unique medical condition and there is an agency with wisdom about that condition, it’s worth asking whether there are specific recommendations that could be customized for a student’s Section 504 Plan or IEP. For example, the American Diabetes Association provides a sample Section 504 Plan to make sure the school is prepared to support the student’s routine and emergency diabetes care.

FAPE rights under Section 504

The right to a Free Appropriate Public Education (FAPE) is protected by Section 504 and the Individuals with Disabilities education Act (IDEA). PAVE provides a video training with more information about FAPE and Student Rights, IEP, Section 504 and More.

The most common way schools protect Section 504 FAPE rights is through accommodations. A student might have specifically designed help to accomplish their schoolwork, manage their emotions, use school equipment, or something else. The sky is the limit, and Section 504 is intentionally broad to capture a huge range of possible disability conditions that require vastly different types and levels of support.

Here are a two specific topic areas to consider when a student is protected by Section 504:

Section 504 complaint options

Some families are anxious about questioning actions taken by the school. Parents have protections under the law. The Office for Civil Rights maintains specific guidelines that prohibit retaliation against people who assert their rights through a complaint process.

A civil rights complaint can be filed at the local, state, or federal level. Here are resources related to those three options:

  • Local: OSPI maintains a list of school officials responsible for upholding student civil rights. Families can reach out to those personnel to request a complaint form for filing a civil rights complaint within their district.
  • State: OSPI provides a website page with direct links to step-by-step instructions for filing a civil rights complaint with the state Equity and Civil Rights Office, or the Human Rights Commission.
  • Federal: The U.S. Department of Education provides guidance about filing a federal complaint. The U.S. Department of Agriculture is another option for dispute resolution related to civil rights.

Diabetes Care in Schools / School Action Plan

Kids spend half their day at school, which means it is incredibly important to have a well-thought-out diabetes management plan for the school day.

Every child will have a unique way of managing their diabetes. Some may use insulin pumps, insulin pens, or a syringe and vial. All students manage their diabetes differently, and all are at different stages. The older students may be more independent and administer their care, while others may be younger or less experienced and need assistance. It is essential that a doctor’s prescribed care and the medical management plan is specific to the individual child.

An excellent place to start is by looking at the diabetes medical management plan template that The American Diabetes Association and the National Diabetes Education Program created. This medical management plan can be customized for every student.  

Another thing to remember is that the school staff are a critical component in your child’s diabetes care plan. Therefore, it is essential that the school has a trained and knowledgeable staff to provide safe care and provision for your child with diabetes. As a parent, you play a considerable role in making that happen. Your child’s diabetes management plan requires a holistic approach. It is imperative that there is clear communication between the parent/guardian, childcare providers, healthcare providers, and the school staff so that all work together with the necessary information and resources that will help your child thrive.

If you are a parent of a child who recently got diagnosed with diabetes, and this is all new and overwhelming for you, it is important to remember that you are not alone in this. There are many resources and a wealth of information online from both professional and personal experiences.

Below is a list of helpful links to get you started:

When Having a Medical Action Plan is Mentioned, Do You Think of Your Child?

American Diabetes Association – Diabetes medical plan

Organize Your Child’s Medical and School Documents with a Care Notebook

Diabetes @ School – Individual Care Plan

School Setting – Insulin Pump, Diabetes School Action Plan

Diabetes Mom Blog – Type 1 Diabetes and Teacher Training