Summer 2020 Recreation and Staycation Options

Summer activities might look different in 2020 because of measures to slow spread of COVID-19. Here are some links and ideas for accessible staycations and other recreation options. This list is subject to changes and updates. Have a suggestion to add? Send us an email: pave@wapave.org.

Please note that these resources are not affiliated with PAVE, and PAVE does not recommend or endorse these programs or services. This list is not exhaustive and is provided for informational purposes only.

Virtual Options

  • Crip Camp 2020: The Virtual Experience
    Join fellow grassroots activists and advocates this summer for a virtual camp experience featuring trailblazing speakers from the disability community. All are welcome, and no prior activism experience is necessary to participate.
  • Youth Leadership Forum
    A Facebook group called Friends of YLF provides the most up-to-date information about plans for a weeklong virtual camp in July 2020.
  • Visit your local library system
    This site provides contact information for Washington libraries. Many libraries offer online activities and options to make summer reading fun and rewarding.
  • Creativity Camp
    Register for a free week of writing, drawing and storytelling classes from award-winning author/illustrator Arree Chung. 
  • Camp Korey
    This 15-year-old program honors the courage, strength, and determination of children with serious medical conditions by providing a camp environment with specialized medical support. 2020 programs include virtual camps and campfire Fridays.
  • Taste of Home catalog of Free Virtual Museum Tours
    From the safety of home and for free, visit the Louvre, SeaWorld, the Winchester Mystery House and many more museums. For example, the Metropolitan Museum of Art provides a free 3-D tour of its exhibit halls.
  • National Parks Virtual Tours
    Insider provides links to virtual tours of 32 national parks, including the Grand Canyon, Yellowstone, and Arches National Park.
  • NASA Kids’ Club and NASA STEM @ Home
    The NASA Kids’ Club offers video-style games and opportunities to learn about the work of NASA and the astronauts. The STEM @ Home programs provide interactive modules in Science, Technology, Engineering and Math (STEM) for grades K-4, 5-8, and 9-12.
  • Sesame Street Caring for Each Other
    Favorite Muppets provide sing-alongs, interactive games, and other ready-to-use materials to spark playful learning for the whole family during COVID-19 and beyond.
  • Storyline Online
    Have you noticed that there are a lot of famous people reading books? Storyline provides a place to find many of them in a virtual library.
  • Nomster Chef
    Picture-book recipes for Kid Chefs and added tips for grown-ups are designed for families cooking together at home.

In-Person Options

Please note that scheduling may change based on COVID-19 restrictions. Please check each program website for the most current information.

  • Spectra Gymnastics
    Programs are designed to support individuals with Autism, sensory issues, and related disorders, ages 2-21.
  • Aspiring Youth  
    Summer camp opportunities with in-person and online options. Camps provide opportunities to explore theater, art, climbing and more. 
  • Camp Killoqua 
    These Camp Fire programs are open to all — including youth who are not members of Camp Fire. Camps strive to be inclusive; acceptance and participation is open to everyone regardless of race, religion, socioeconomic status, disability, sexual orientation, or other aspect of diversity.
  • C.A.S.T. for Kids
    Catch a Special Thrill (C.A.S.T.) provides fishing events for kids with special needs. Check the interactive map and calendar for summer events near you.
  • Blue Compass Camps
    Sea Kayaking in the San Juan Islands is among the offerings for youth with high-functioning autism, Asperger’s, and ADHD.

Low-Tech Fun

  • Pirate Treasure Hunt: Dress up as pirates to follow clues that lead to a bounty of treasure! Decorate the house, offer goldfish- shaped crackers as snacks, and design an X to mark the spot where the treasure is found!
  • Under the Stars:  Stay up late to learn about astronomy. No cost apps like Sky Map and Star Walk help locate planets, stars, and constellations with ease. Make it fun on a warm night with a blanket on the grass to keep you comfy while you gaze up!
  • Unplug and get off the grid: Make a point to unplug and tune into fresh air, exercise, and nature. If you don’t already know an outdoor spot to explore, All Trails can help you find hiking or walking trails.
  • Check out PAVE’s Lessons at Home videos: We’ve got short, curiosity-inspiring projects that require limited equipment for those “I’m bored!” moments.
  • Practice being Mindful: Need a breath and a moment of peace? PAVE has short videos for creating mindfulness that are accessible for almost all ages/abilities.
  • For more ideas and information, PAVE provides two resource lists to help with learning at home and to support families navigating the national health emergency:

Tips to Help Parents Reinforce Positive Behaviors at Home

A Brief Overview

  • Positive Behavioral Interventions and Supports (PBIS) is a strategy schools use to teach children expected behavior. Read on for PBIS strategies families can use at home.
  • A key PBIS principle is that punishment fails to teach children and youth what they should do instead. Adults can direct a child toward a better choice or interrupt an escalation cycle.
  • The easiest way to change a behavior is to point out what a person does right. Remember this catchy phrase, “5:1 gets it done,” to ensure five positive interactions for each negative interaction.
  • Parents might find success with strategies they can share with school staff eventually.
  • For additional strategies unique to COVID-19, the Office of Superintendent of Public instruction (OSPI) offers a series of 3 webinars for family caregivers. For information and links to the videos, see PAVE’s article: Webinars offer Parent Training to Support Behavior during Continuous Learning.

Full Article

Schedule changes and seasonal transitions cause emotional upheaval for some families in typical years. Summer 2020 includes unique conditions, with families moving into a summer with fewer-than-usual options to keep children busy after months of learning from home due to the COVID-19 building closures. A few strategies, described below, might help families keep things chill this summer.

Experts in education use a framework for creating a positive environment called Positive Behavioral Interventions and Supports (PBIS). PBIS has been implemented in more than 26,000 U.S. schools. The PBIS framework has been shown to decrease disciplinary removals and improve student outcomes, including grades and graduation rates. When done well, PBIS provides positive social skills, communication strategies and “restorative justice,” (working it out instead of punishing) and may prevent 80-90 percent of problem behaviors.

Punishment does not teach

PBIS requires an understanding that punishment fails to help a child know what to do instead. Researchers have learned that a child who is being punished enters an emotionally dysregulated state (fight/flight/freeze) that blocks learning. Adults who calmly direct a child toward a new way of problem-solving can interrupt or prevent an escalation.

Keep in mind that adults need to stay regulated to help children. For strategies related to mindfulness, see PAVE’s article: Stay Home Help: Get Organized, Feel Big Feelings, Breathe. PAVE also provides a library of short videos with mindfulness and breath practices for all ages and abilities: Mindfulness Videos.

Within a PBIS framework, de-escalation strategies might include:

  • Remove what is causing the behavior
  • Get down to eye level
  • Offer empathy—the ability to understand and share the feelings of another
  • Provide choices
  • Re-teach expectations
  • Reinforce desired behaviors
  • Communicate care instead of control

Behavior is a child’s attempt to communicate

Simple, consistent, predictable language is a critical component. Insights about these strategies and more were shared in a webinar by Change Lab Solutions on April 30, 2019.

Among experts talking about PBIS are staff at the University of Washington’s School of Mental Health Assessment, Research and Training (SMART) Center. Staff from the SMART center lead the School Mental Health supplement of the Northwest Mental Health Technology Transfer Center (NWMHTTC). These agencies, in collaboration with the League of Education Voters, in June 2019 hosted a webinar: How to Implement Mental Health Supports in Schools, focused on the importance of blending school and community supports with PBIS.

A University of Washington (UW) expert who participated in the webinar is Kelcey Schmitz, a former OSPI staff member who has written articles for PAVE about positive behavior supports and state initiatives and has experience helping families and schools implement PBIS.

“PBIS is a game changer for children and youth with behavior challenges and their teachers and caregivers,” Schmitz says. “In fact, everyone can benefit from PBIS. Behavior is a form of communication, and PBIS aims to reduce problem behavior by increasing appropriate behavior and ultimately improving quality of life for everyone. The same approaches used by schools to prevent problem behaviors and create positive, safe, consistent and predictable environments can be used by families at home.”

Schmitz, an MTSS training and technical assistance specialist, provides the following specific tips for creating a successful PBIS home environment.

Support Positive Behavior before there is a problem

PBIS is set up with three layers—called tiers—of support. The parent-child relationship is strengthened by loving and positive interactions at each tier.

Tier 1 support is about getting busy before there is a problem. Much like learning to wash hands to prevent getting sick, expected behavior is taught and modeled to prevent unexpected behaviors.  Parents can look at their own actions and choices and consider what children will see as examples of being respectful, responsible, and safe.

Tiers 2 and 3 are where adults provide more support for specific behaviors that are getting in the way of relationships or how the child or youth functions. In a school setting, Tier 2 is for students who need a social group or some extra teaching, practice, and reinforcement. Tier 3 supports include a Functional Behavioral Assessment (FBA) to find out why the behavior is occurring, and an individualized Behavior Intervention Plan (BIP).

Any student may access supports that include aspects of Social Emotional Learning at all three Tiers. At home, Tiers 2 and 3 naturally will be more blended and may include support from a community provider. Note that targeted interventions in Tiers 2-3 work best when Tier 1 is already well established.

Define, teach, and routinely acknowledge family expectations

  • Discuss how you want to live as a family and identify some “pillars” (important, building-block concepts) that represent what you value. Talk about what those pillars look like and sound like in every-day routines. To help the family remember and be consistent, choose only 3-5 and create positive statements about them. Here are a few examples:
    • Speak in a respectful voice.
    • Be responsible for actions.
    • Be safe; keep hands, feet, and objects to self.
  • Identify a couple of “hot spots” to begin. Challenging behaviors often occur within routines.  Perhaps mornings or mealtimes create hot spots for the family. After discussing 1-2 ways to be respectful, responsible, and safe in the morning, teach what each looks like. Have fun with it! Set up “expectation stations” for practicing the plan and assign each family member one pillar to teach to the rest.
  • Behaviors that get attention get repeated. Notice when a child does the right thing and say something about each success: “I noticed you stopped to pick up your shoes in the hallway. Thanks for putting them away and keeping the walkway safe for others.” The easiest way to change a behavior is to point out what a person does right!
  • Remember this catchy phrase, “5:1 gets it done” to ensure five positive interactions for each negative interaction. When the expected behavior becomes routine, the reinforcement can fade away.

Create engaging and predictable routines

  • Children crave structure and routine. Adults may look forward to a relaxing evening or weekend, but kids often need regular activity and engagement. Consider that either the kids are busy, or the adults are busy managing bored kids!
  • Use visuals to create predictability. A visual schedule can display major routines of the day with pictures that are drawn, real photos or cut-outs from magazines. Create the schedule together, if possible.  Parents can ask a child to check the schedule – especially when moving from a preferred to non-preferred activity. It’s hard to argue with a picture!

Set the stage for positive behavior

  • Teach, pre-teach, and re-teach. Children need to learn behavior just like they learn colors and shapes. A quick reminder can help reinforce a developing skill: “When we get in the car, sit up, buckle up, and smile!”
  • Give transition warnings or cues to signal the end of one activity and the beginning of another: “In five minutes, it will be bath time.”
  • First/then statements set up a child for delayed gratification: “First take your bath; then we can play dolls.”
  • Focus on Go instead of Stop. Children often tune out words like NoDon’t and Stop and only hear the word that comes next, which is what an adult is trying to avoid. Tell a child what to do instead of what not to do: “Take your plate and put it in the sink.” Save Stop and No for dangerous circumstances that need a quick reaction.
  • Choices prevent power struggles: “Would you rather play for five more minutes or get in the bath now?”  “Feel free to choose the pink pajamas or the green ones.”

While these strategies may not eliminate all problem behaviors, they create consistency, predictability, and a more positive atmosphere. They teach new skills to help children get their needs met. The solid foundation will help even if challenging behaviors persist by creating a bedrock for additional layers of support.

Here are places to seek additional information:

Parenting with Positive Behavior Support: A Practical Guide to Resolving Your Child’s Difficult Behavior 

Home and Community Based Positive Behavior Support Facebook Page

Home and Community PBS Website

Parent Center Hub Positive Behavior Supports Resource Collection

Intensive Intervention: An Overview for Parents and Families

The Association for Positive Behavior Support

Getting Behavior in Shape at Home

Family Resources for Challenging Behavior

The National Center for Pyramid Model Innovations (NCPMI) Resource Library, articles in multiple languages

Key Information and Creative Questions for Families to Consider During COVID-19 Closures

A Brief Overview

  • While schools are operating, districts are responsible to provide a Free Appropriate Public Education (FAPE) to students within their boundaries with known or suspected disabilities that significantly impact access to learning. Read on to learn more about FAPE and student rights.
  • Federal and state requirements to ensure that children with qualifying disabilities can access early learning services and make the transition to school-based services if eligible at age 3 also are still in place, without waivers.
  • FAPE requirements for high-school transition services apply now, as always. PAVE’s article, High School Halt, includes more information on topics impacting graduating seniors and youth transitioning through high school and beyond.
  • How a student of any age accesses FAPE during a national health crisis is a work-in-progress. A Continuous Learning Plan (CLP) is a tool schools and families might use for temporary circumstances. PAVE provides another article describing that process: IEP on Pause? How to Support Continuous Learning with School Buildings Closed.
  • Families might be interested in attending a school board meeting to learn more about decisions being made at this time. Read on for more information about Open Meetings.
  • The final section of this article includes creative conversation starters, some ideas and prompts that might help your family prepare to talk with school staff.
  • To support well-being for family members of all ages and abilities, PAVE provides this article, which includes links to videos with simple mindfulness/breathing practices: How to Get Organized, Feel Big Feelings, and Breathe.

Full Article

With schools closed and lives disrupted by the COVID-19 crisis, families impacted by disability have unique questions. This article includes key information about student rights and creative conversation starters that family caregivers might consider when planning to meet with school staff over the phone, through written communication or over a web-based platform.

Student rights have not been waived

Students with disabilities have protections under federal and state laws. Those rights and protections are not waived during the school building closures. While schools are operating, districts are responsible to provide a Free Appropriate Public Education (FAPE) to students within their boundaries with known or suspected disabilities that significantly impact access to learning. The protections of FAPE include the right to:

  • Appropriate evaluation if there is a known or suspected disability condition that may impact educational access (Please refer to PAVE’s articles on Evaluations Part 1 and Child Find for more information)
  • Specially Designed Instruction (SDI) in areas of learning with significant educational impact from the disability and an identified need for SDI
  • Meaningful progress toward goals, which are developed to measure the effectiveness of Specially Designed Instruction (SDI)
  • Accommodations (extra time, videos with captioning or embedded sign language interpreting, accessible reading materials, other Assistive Technology…)
  • Modifications (shorter or different assignments, testing, etc.)
  • Special services (speech/language, occupational or physical therapy through video conferencing, for example)
  • Not get bullied or discriminated against because of a disability circumstance

FAPE rights related to accommodations, modifications and anti-bullying measures are protected by the Rehabilitation Act of 1973 and apply to all students with disabilities, including those who have Section 504 Plans and those with Individualized Education Programs (IEPs). FAPE rights related to evaluation process, SDI, and formal goal setting are aspects of the IEP and are protected by the Individuals with Disabilities Education Act (IDEA).

In accordance with the IDEA, the IEP includes a description of the student’s present levels of academic achievement and functional performance. Special education attorneys Pam and Pete Wright have published books about special education law and maintain a website, Wrightslaw.com. Included during the pandemic is this page: IEPs During the COVID-19 Era: Your Parental Role and Present Levels in IEPs.

The Wrightslaw page encourages parents to read and re-read the present levels statements before meeting with the school. These statements form the basis for the student’s goals and other services. Up-to-date and comprehensive data within the present levels section of the IEP can be key to a successful outcome.

Wrightslaw encourages family caregivers to provide input for the present levels statements and to request further evaluation if the statements are incomplete or out of date. Creativity and collaboration are encouraged to allow for data collection while school buildings are closed: “Parents, never forget why you are essential members of your child’s IEP team. You are essential because your job is to represent your child’s interests. So, you need to be an active member, not a spectator. Your goal is to work with other members of the team to develop IEPs tailored to meet your child’s unique needs.”

No Waivers to Early Learning Requirements

Federal and state requirements to ensure that children with qualifying disabilities can access early learning services and make the transition to school-based services if eligible at age 3 also are still in place, without waivers.

Washington’s Department of Children, Youth and Families (DCYF) provides COVID-19 guidance for families of children in early learning through the Early Support for Infants and Toddlers (ESIT) program. Included is information about the Individual Family Service Plan (IFSP), how to manage a transition from IFSP to school-based services during the pandemic and tips for telemedicine appointments and protection of confidentiality.

The Office of Superintendent of Public Instruction (OSPI) provides guidance to schools in Washington. In early May 2020, OSPI issued guidance specifically related to early childhood programs during the COVID-19 closure. In particular, the document addresses a child’s rights through the federal Individuals with Disabilities Education Act (IDEA).

Services for children Birth-3 are defined by IDEA’s Part C, and school-based services for children 3-21 are defined by IDEA’s Part B. About 3 months before a child with an IFSP turns 3, the school district is responsible to evaluate the child to determine eligibility for an IEP. PAVE provides a general article about the early learning transition process.

According to OSPI guidance, “School districts are expected to move forward with initial Part B evaluations as specified in the Early Childhood Transition from Part C to B Timeline Requirements. School districts must make reasonable efforts to comply with the requirement and may utilize alternative means for conducting virtual assessment and IEP team meetings, such as telephone or videoconferencing.”

Communication is key

How a student of any age accesses FAPE during a national health crisis is a work-in-progress that requires communication and collaboration between schools and families. On its website page titled Special Education Guidance for COVID-19, OSPI provides links to numerous documents that guide schools in best-practice for outreach to families.

On May 5, 2020, OSPI issued a Question & Answer document to address special-education delivery. “This is a national emergency,” the document states, “and districts should be communicating with families and making decisions based on student need and how those services can be provided. There is no one right way to provide services.”

IEP and Section 504 meetings are encouraged, and teams can build different versions of the documents to support at-home learning now and in-school services when buildings reopen. A Continuous Learning Plan (CLP) is a tool schools and families might also use for temporary circumstances. PAVE provides an article describing that process, with linkages to the plan’s template: IEP on Pause? How to Support Continuous Learning with School Buildings Closed.

OSPI notes that health and safety are top priority and that some aspects of a student’s program may not be possible to implement during the crisis. Discussion about Compensatory Services to make up for elements of FAPE not provided during the closure will require a review of documentation.

Keep notes about student learning

Schools and families are encouraged to keep notes about student learning and access to education and/or special services during days that schools are providing educational services to all students. Parents can ask the district to define its official dates of operation. When a school is officially closed, the district is not responsible to provide FAPE, according to OSPI guidance.

State guidance related to the provision of FAPE aligns with federal guidance issued since the pandemic began. On March 16, 2020, the U.S. Department of Education Office for Civil Rights (OCR) and the Office for Special Education and Rehabilitative Services (OSERS) issued a fact sheet describing the federal rights of students with disabilities:

“If the school is open and serving other students, the school must ensure that the student continues to receive a Free Appropriate Public Education (FAPE), consistent with protecting the health and safety of the student and those providing that education to the student.”

Families can reach out to School Boards and Counselors

Families are meeting these emergency circumstances from a wide range of places economically, medically, emotionally, and logistically. School districts statewide have different staffing arrangements and approaches, and Washington schools are locally managed and overseen.

Families might be interested in attending a school board meeting to learn more about decisions being made at this time. Families have the option of making public comment at meetings to share thoughts or concerns. School board meetings are required monthly and must follow the state’s Open Public Meetings Act (Chapter 42.30 in the Revised Code of Washington).Families can reach out to their local district for information about how and when school boards meet. The Washington State School Directors’ Association provides a guidebook about the rules for Open Public Meetings. The rules apply in any meeting space or platform.

For additional support, families might consider reaching out to the school counseling office. The president of the Washington School Counselor’s Association, Jenny Morgan, provided comments in a May 7, 2020, webinar moderated by League of Education Voters. She said school counselors provide a broad range of services, from academic advising to social and emotional support. The American School Counselor Association provides a handout describing the roles of a school counselor.

Morgan says school counselors are uniquely trained to address the academic, career, and social/emotional development of all students through a comprehensive school counseling program. “We are advocates for your child’s educational needs,” she says. “Please do not hesitate to reach out to your school counselor for assistance and support. We are here for you.”

Creative conversation starters

Here are some ideas and prompts that might help your family prepare to talk with school staff. Keep in mind that some answers will not be easily provided, and conversations are ongoing.

  • My child struggles to understand social distancing. What strategy can we use to teach and practice this skill so it will be ready to use when schools reopen?
  • What social story does school staff have to share that will be accessible for my student to understand the coronavirus and why we need to stay home and practice good hygiene?
  • How can the school help my student cope with a high level of anxiety, grief, fear (any emotion that significantly impacts a student’s ability to focus on learning)? Which school counselor can help?
  • My child is turning 3 this month. Who can we talk to at the school district to help get our child ready for preschool? 
  • My student does not want to do school right now. How can we work together to motivate my student to participate in learning and do the work?
  • My student wants to cook, research cars, talk about space flight, do craft projects, walk in nature, play with the family dog, plant a garden … right now. How can we make sure that continuous learning objectives match my child’s natural curiosity?
  • My student loves to play the drums (or something else specific). How can drumming and music (or any interest) be part of the math (or other subject) assignment?
  • The homework packet, online platform, etc., is not accessible to my child. How can we work together and create a learning plan that will work for our family at this time?  
  • My child has a health condition that creates a greater risk for COVID-19 exposure. What could school look like for my child if buildings reopen but my child cannot safely re-enter a traditional classroom?
  • My student is in high school. How can we work together to make sure that the IEP Transition Plan and the High-School and Beyond Plan align? Can we invite the school counselor to our next meeting if we need more help?
  • Can my student do a self-directed project or an alternative assignment to earn a grade or meet a specific objective? Is there a modified way to demonstrate the learning, perhaps through a video, an art project, or a conference with the teacher?
  • Who is the transition counselor assigned to our school by the Division of Vocational Rehabilitation (DVR)? What tools and people can my student work with right now to explore career options and prepare for adult life?
  • What can school staff do to make sure that my student’s current education includes progress toward independent living goals? (Note: PAVE’s article, High School Halt, includes more information on topics impacting graduating seniors and youth transitioning through high school and beyond.)

During the school closures related to the coronavirus pandemic, families with students of all ages and abilities are figuring out strategies for coping with the disruptions. Additional articles from PAVE provide information about working with the school to design a Continuous Learning Plan, preparing for a virtual meeting, student rights during the School Shutdown and How to Get Organized, Feel Big Feelings, and Breathe during the crisis.

Tips to Organize Your Child’s Medical and School Documents

Care planning and a well-organized system to keep track of important documents can save time and create comfort during uncertain times. This article provides some tips for building a “care notebook,” which might be a three-ring binder, an accordion file, or a portable file box—whatever makes sense for your organizational style and the types of materials you need to sort.

A portable Care Notebook can include the most current versions of medical or school documents, while older files can be archived separately. Here are some examples of formal documents you might organize:

  • Medical paperwork: diagnoses, assessments, surgeries, medications, provider contacts
  • School paperwork:  Individualized Education Program (IEP), Section 504 Plan, assessments, meeting notifications, progress notes, correspondence, telephone logs
  • Personal care notes: hygiene routines and concerns, food preferences and issues, sleep schedules and challenges
  • Community access: transportation needs, hobbies, clubs, activities

Consider what else to include, such as business cards and contacts, a call log, a calendar, emergency/crisis instructions, prescription information, history, school schedule…

Each primary category can be a section of a large notebook or its own notebook. Consider how portable the notebook needs to be and where you might take it or share it. Will the size and shape be practical for where you plan to go? Do you need more than one notebook or system?

Keep emergency information handy and easy to clean

A small “on the go” handout might be helpful for critical care appointments or emergencies. A laminated handout or a page tucked into a protective sleeve will be easier than a large notebook to disinfect after being in public. Depending on a child’s needs, caregivers might create multiple copies or versions of an on-the-go handout for easy sharing with daycare providers, school staff, babysitters, the emergency room, camp counselors or others who support children.

Key information for a quick look could include:

  • medications and dosages
  • doctors and contact information
  • emergency contacts—and whom to call first
  • allergy information
  • preferred calming measures

Plan for a caregiver’s illness

Another pull-out page or small notebook might include specific instructions about what to do if a caregiver gets sick. These questions could be addressed:

  • Who is the next designated caregiver?
  • Where can the child live?
  • What are specific daily care needs and medical care plans?
  • Is there a guardianship or a medical power of attorney?
  • Are there any financial or long-term plans that need sharing?

Step-by-Step Instructions

Building a Care Notebook does not have to be daunting. Most people start small and try different approaches until they find the best fit.  Here are a few ideas to start the process:

  • Choose a holding system that makes sense for your organizational style: notebook, accordion file, small file box, or a primarily digital system with limited “to-go” handouts.
  • Identify and label the document sections by choosing tools that fit your system: dividers, clear plastic document protectors, written or picture tabs, color coding, card holders for professional contacts, a hierarchy of folders on your computer…
  • Include an easy-to-access calendar section for tracking appointments.
  • Include a call log, where names are recorded (take time to spell full names correctly!) and phone numbers of professionals. Take notes to create a written record of a conversation. It is also practical to send a “reflective email” to clarify information shared in a call, then print the email, and tape it into the call log to create a more formal written record of the call.
  • A separate sheet of easy-reference information can be used to share with a caregiver in a new situation, such as daycare, doctor, camp, or a sleepover. Mommies of Miracles has an All About Me template that serves this purpose.
  • When appropriate, invite the child to participate.
  • Use technology: Dr. Hempel Digital Network provides 10 health-record applications with four options that combine electronic medical records with telehealth capabilities. Other applications work with cellular phones. Here are three: MTBC PHR, Medical Records, and Medfusion Plus.

Tools to help you begin

Quick and easy forms can help you start. Here are two options:

  1. Portable Medical Summary from Seattle Children’s Hospital
  2. What’s the Plan from the Washington Department of Health

Guidance to help you build a more comprehensive care notebook is available from Family Voices of Washington. Printable forms can be done in stages and updated as needed to slide into a notebook or filing system. The templates include pull-out pages for Emergency Room or Urgent Care visits and forms to help organize medical appointments.

A child’s medical providers might help write a care plan and can provide specific contact information, medication lists and emergency contact procedures for each office. A school can provide copies of an Individualized Education Program (IEP), a Section 504 Plan, an Emergency Response Protocol, a Behavior Intervention Plan or other documents. If a child is in state-supported daycare (on location or in-home), staff can provide forms for emergency procedures and contacts.

You will thank yourself in the future!

Having information organized and ready can make it easier to apply for public services through the Social Security Administration, the Developmental Disabilities Administration (DDA), the Division of Vocational Rehabilitation (DVR) or others. For military families, a Care Notebook can make transitions and frequent moves easier to manage.

A well-established organization system also can help a child transition toward adult life. Easy access to a list of accommodations can ease that first meeting with a college special services office or provide a key set of documents for requesting employment supports through DVR. Easy access to key medical records can be the first step to helping a child learn what medications they are taking and advocate for an adjustment with an adult provider

Additional resources for long-term planning include:

Quick Look: How to Prepare for a Virtual Meeting

Schools and families continue to meet virtually to discuss special education services during the closures related to the coronavirus pandemic. Here are tips to help family members prepare for remote meetings to discuss a student’s Individualized Education Program (IEP), a Section 504 Plan, evaluation for special education services or something else related to a special education student’s needs and learning program.

For more comprehensive information, see PAVE’s article, IEP on Pause? How to Support Continuous Learning with School Buildings Closed.”

  • Determine a regular communication plan with the school. That might include email, telephone, text, web-based meetings, U.S. mail, packet delivery by school bus…  whatever works for regularly checking in.   
  • Family caregivers can request meetings. PAVE provides a template to formalize the request: Sample Letter to Request an IEP Meeting. Included with the letter template is detail about who is required to attend IEP meetings, and those requirements have not changed.
  • The Special Education Continuous Learning Plan is provided by the Office of Superintendent of Public Instruction (OSPI) to support but not replace the IEP during the national crisis caused by the coronavirus pandemic. Included in the form is a sample meeting agenda.
  • Consider confidentiality and privacy issues. Ask school staff to describe how privacy and confidentiality are protected through a suggested meeting platform, and make sure to have any passwords or PINs ready to use when you log in or call into a meeting.
  • Before a meeting, ask to sign any necessary paperwork or releases to have special education records sent electronically via email. Special education records can include meeting notifications, IEP or Section 504 documents, assessments, progress reports, Prior Written Notices that describe meetings and planned actions, or other materials that contribute to the program review and goals.  
  • Review records before the meeting and write down questions to ask during the meeting. PAVE provides a Parent Handout Form or, for self-advocates, a Student Handout Form, that can help organize concerns and questions. Another version of a Parent Input Form is provided by the Washington Office of Superintendent of Public Instruction (OSPI).
  • Carefully review goals, services, accommodations, modifications and consider how they might apply or need to be adjusted for current circumstances. Think creatively and prepare to collaborate and request expertise from school staff. Pay special attention to the present levels of academic achievement and functional performance. These present levels statements, within the first pages of the IEP document, describe how the student is doing and where there are challenges. Wrightslaw.com provides tools specifically to support parents in reviewing IEP present levels in preparation for a meeting during COVID-19.
  • Consider whether the student will attend the meeting. A student who is 14 or older is invited as part of the state’s Pathways to Graduation planning. PAVE provides an article: Attention Students: Lead your own IEP meetings and take charge of your future.
  • Communicate early—before the scheduled meeting—to request updates about progress, a student’s present levels of performance, or other concerns. If family caregivers build a handout for the meeting, that can be submitted ahead of time to ensure that this information is part of the agenda.
  • Family members can request a practice session to test the technology. Part of that training might include practice sharing the screen to make sure everyone will be able to view important documents during the formal meeting.
  • As with in-person meetings, family participants can invite support people. A friend or family member might be able to attend and take notes.
  • Refer to parent and/or student input forms to stay on topic and ensure that all concerns and questions are addressed.
  • When the meeting ends, family participants can ask for a copy of the program recommendations page.
  • After the IEP meeting, the school provides a Prior Written Notice (PWN) to the family participants to review meeting notes and any decisions, agreements, or disagreements. Ask when and how the PWN will be provided. Family participants have the right to request amendments or corrections to the PWN.
  • Be sure to leave with a clear action plan. Here are key questions to ask and record:
    • What will happen?
    • Who is responsible?
    • When will the actions happen? Are there timelines?
    • How will we communicate for follow through?
  • As with any meeting, any unresolved issues can be addressed in a follow-up meeting.

To learn more, PAVE provides a six-minute overview of IEP basics and a 30-minute training video about special education.