High School Halt: Ways to Support Youth Working on Adult Life Plans During COVID-19

A Brief Overview

  • The pandemic and its impact on education may feel especially confusing for youth working toward graduation and life-after-high-school plans. Read on for information about how to support young people working on their diplomas and goals for college, vocational education, independent living, and more.
  • The state continues to navigate questions related to graduation pathways and credit requirements for students impacted by COVID-19. This article includes links to resources where information is regularly updated.
  • Students learning from home may need support to organize their days and incorporate the activities of daily living into their educational programs. This article includes some ideas for organizing at-home learning.
  • Another article from PAVE provides more information about vocational rehabilitation options for young people, during COVID and beyond: Ready for Work: Vocational Rehabilitation Provides Guidance and Tools.

Full Article

The COVID-19 pandemic and its impact on education may feel especially confusing for those who are working toward graduation and life-after-high-school plans. Parents and students may be wondering what will enable students to complete work toward their diplomas, meet college admission requirements or continue work toward vocational and/or independent living goals.

Since March 2020, the National Technical Assistance Center on Transition (NTACT) has provided webinars and other materials to promote home-based learning for transition-age youth with disabilities. This article includes some of NTACT’s ideas. The agency’s website provides webinar recordings and additional materials: Transition Resources in the 2020-2021 School Year.

In collaboration with the Center for Parent Information and Resources (CPIR/ParentCenterHub.org), NTACT provides an interactive tool for young people: Secondary Transition Considerations and Guiding Questions for Youth Exiting from High School. Throughout the document, a young person is guided to a variety of links and resources based on the way questions are chosen and answered. For example, “Things you can do now to help meet your postsecondary employment goal” provides a set of suggestions:

“Make a list of your career interests, the best work location for you, and types of jobs that best fit your skills. If you aren’t sure what jobs or careers interest you, explore your options at ‘Get My Future’ on the Career One Stop website.”

Graduation requirements shift

The Washington State Board of Education (SBE) provides information about graduation impacts of COVID-19. SBE in summer 2020 began a rulemaking process to provide districts more flexibility to:

  • Award credit based on demonstration of mastery or competency
  • Offer courses that meet more than one subject area graduation requirement
  • Waive the Washington state history requirement for some students impacted by school closures or other disruptions. Waivers are individually determined.

The State Legislature passed a law in response to coronavirus (EHB 2965) that supported emergency waivers for the graduating Class of 2020. The goal was to ensure that students on track to graduate would not be held back because of the pandemic.

Graduation standards and requirements also are impacted by a 2019 law that provides multiple pathways toward a diploma. The Office of Superintendent of Public Instruction (OSPI) offers a website page describing the Graduation Pathways, with toolkits for families and students.

For a student eligible for an Individualized Education Program (IEP), the IEP team determines what criteria are met for the student to earn a diploma and the timeline for graduation. Families are encouraged to reach out to IEP team members, district staff, and school counselors to collaborate on how the IEP and graduation targets are adjusted in light of the pandemic.

Recovery services and/or compensatory services may be available

The Office of Superintendent of Public Instruction (OSPI) provides a 60-page booklet: Reopening Washington Schools 2020: Special Education Guidance. The guidance defines recovery services, as “additional, supplemental services needed to address gaps in special education service delivery due to COVID-19 health and safety limitations, of which districts had no control.”

Compensatory services are provided as a remedy when a school is found through a dispute resolution process to have denied a Free Appropriate Public Education (FAPE). By federal law (Individuals with Disabilities Education Act/IDEA), a student with an IEP is entitled to FAPE, which provides an individualized program to enable progress appropriate in light of a student’s unique circumstances. Those circumstances include strengths and assets, disability condition, family considerations, the pandemic, and more.

Students in transition programs who aged out during Spring 2020 may be eligible for recovery and/or compensatory services. Other students who missed key learning also could be eligible. Families can reach out to their IEP teams and/or district special education program staff to discuss options. Data about school/family communications, accessibility of educational materials, and IEP/transition services provided/not provided will contribute to conversations about recovery/compensatory services.

Creativity may be needed to ensure educational access in all areas of learning, including those related to the transition into adulthood. OSPI’s guidance includes a section on Graduation & Secondary Transition, with step-by-step instructions for educators supporting youth with transition programming:

“Secondary transition is more than providing pathways for the individual’s movement from high school to employment,” the guidance states. “It is a comprehensive approach to educational programs, focused on aligning student goals with educational experiences and services. When we move these activities to the continuum of reopening models, we have to stretch our thinking about how this can be done.”

What about college admission requirements?

Students who are college-bound may have questions about admissions requirements and whether they can still be met. The National Association for College Admission Counseling has encouraged colleges to be flexible and has created a central resource for information related to Coronavirus and College Admission.

How can I help my student organize the day to include learning?

NTACT offers a range of downloadable Transition Focused Instructional Resources, including tools to help with scheduling and others for helping young people stay socially connected. In a March 24 webinar, the agency encouraged creative ways to support regular work in each of the key areas of learning for a student with an IEP:

  • Life skills
  • Self-determination
  • Self-advocacy
  • Desire to work
  • Enriching experiences
  • Appropriate goals

Teachable moments might include real-life situations related to the pandemic and a new routine. Students still can have the opportunity to make choices and to live with the consequences of choices and actions. For example, a student-made meal might not be gourmet but can be enjoyed on its merits of life-skill-building and risk-taking.

How can the IEP support work at home?

NTACT recommends development of a consistent routine and documentation of daily work and any progress or regression. To help with planning, anyone supporting the student can take a close look at the current IEP.

The Present Levels of Academic Achievement and Functional Performance, which are built from evaluation results, can provide inside about the student’s strengths, interests, and capacities. Annual goals will highlight the areas of specially designed instruction being provided through the IEP. Consider how instruction might be adapted for at-home instruction—or whether a more suitable goal might be considered. School staff and family members can collaborate to set up a shared approach.

For a student older than 16, a post-secondary transition plan is included in the IEP and includes projections about adult goals and the skills being worked on to get there. NTACT provides Choice Boards to support ongoing work in three key areas that are aspects of a transition plan:

  • Career exploration
  • Education and training
  • Independent living

The Choice Boards are pre-loaded with resource linkages and suggestions.

Think into the future

PAVE provides a webinar and a comprehensive article about life-after-high-school planning with further guidance about the transition process in general. More time at home together might give families a good opportunity to sit back and consider key questions to help the student make future plans:

  1. Where am I now?(strengths, interests, capacities—the Present Levels of Performance in the IEP)
  2. Where do I want to go?(aspirations, dreams, expectations—Transition Plan Goals in the IEP)
  3. How do I get there?(transition services, courses, activities, supports, service linkages, community connections, help to overcome barriers—Annual Goals, Accommodations and other provisions included in the IEP)

What can we do at home today?

Consider how transition programming can be adapted to current circumstances so a young person continues to be connected to important relationships and inspired toward the future. Daily successes are to be celebrated, and high expectations elevate everyone. Below are some typical home-based subject areas that might support learning and skill-building, with a few linkages to resources that might help.

  • Leisure and Recreation
  • Home Maintenance
    • Organizing
    • Cooking
    • Cleaning
    • Yard Work
  • Personal Care
  • Finances
    • Budgeting—Cents and Sensibility from the Pennsylvania Assistive Technology Foundation provides an approach for individuals with autism.
    • Practice with money by paying for things throughout the day
  • Communication
    • Letter and email writing
    • Webinars
    • Phone calls/interview a friend or relative about their career path and write about it?

Other places that provide vocational questionnaires and forecasting tools

  • AgExplorer.com helps students imagine themselves in fields related to farming and beyond
  • ExploreWork.com helps students with disabilities consider their strengths and interests and how to relate them to work options
  • RAISECenter.org offers a variety of tools related to vocational rehabilitation. (RAISE stands for Resources for Advocacy, Independence, Self-determination and Employment.)
  • CareerOneStop.org, sponsored by the US Department of Labor, provides career assessments through its website and a mobile app.
  • Options for further information related to higher education
  • ThinkCollege.net
  • OffToCollege.com
  • ParentCenterHub.org provides a library of college preparation resources related to specific disability categories

For additional ideas about supporting a student with in-home learning please refer to PAVE’s Links for Learning at Home During School Closure.

Please note that any resource list provided by PAVE is not exhaustive, and PAVE does not endorse or support these agencies. Links are provided for information only.

IEP on Pause? How to Support Continuous Learning

A Brief Overview

  • This article provides some considerations for families while students are doing school in new ways during the COVID-19 pandemic.
  • As always, programming for students who qualify for special education services is uniquely designed to address a student’s strengths and needs. Special education law maintains a student’s right to a Free Appropriate Public Education (FAPE), although some aspects of a student’s Individualized Education Program (IEP) may not be deliverable because of health and safety concerns.
  • The Office of Superintendent of Public Instruction (OSPI) in July 2020 issued a guidebook, Reopening Washington Schools 2020: Special Education Guidance, with information for educators and families.
  • Updates and additional handouts for families are available in multiple languages on OSPI’s website: Special Education Guidance for COVID-19.  
  • The Special Education Continuous Learning Plan is provided by OSPI to support but not replace the IEP. Read on for more information about how to make contingency plans so students continue to make progress regardless of where education is provided.

 

Full Article

Some teachers and family caregivers are cooking up clever ways to deliver learning to students during the public health crisis caused by COVID-19. Their recipes for success include carefully built schedules; a mix of curriculum materials that adapt to different settings; regular check-ins between school and family; social-emotional support strategies; and adaptability to address a student’s unique interests, talents, and needs regardless of where education is provided.

If that is not your family’s reality, you are not alone. During this national emergency, families are not expected to have a perfect plan for what to do and how to do it. Neither are schools, which are being asked to redesign themselves by the moment. This article provides some basic considerations for families and schools who serve students with special educational needs. This time of crisis clearly calls for communication, creativity, and unique efforts toward collaboration.

For more about social-emotional support for the family see PAVE’s article, Stay-Home Help: Get Organized, Feel Big Feelings, Breathe. PAVE also provides a library of short mindfulness practice videos for all ages/abilities: Live Mindfully.

School decisions are made locally

Uncertainty about the 2020-21 school year is ongoing. At an Aug. 5, 2020, press conference, Washington State Superintendent Chris Reykdal noted that 2020-21 will be “the most complicated school year in American history.”

WA Governor Jay Inslee stated at the press conference that decisions about whether school buildings are open will be made locally. 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. Public comment is part of each public meeting, and the open meeting rules apply in any space or platform.

No disability rights are waived

Reykdal has encouraged families to stay engaged with their Individualized Education Program (IEP) teams regardless of where the student is learning. “I want to constantly challenge you to work with your school district and reach out,” Reykdal said in April 2020.

“Make sure you understand who is responsible for delivering those services at this time and whether you think that IEP needs to be revisited. That is the right of parents, and that is the relationship that has to happen on the local level. We’ll keep guiding to this. The expectation is clear. We are delivering special education services. We are delivering supports for students with disabilities. There’s no exemption from that. There’s no waiver from that.”

The Office of Superintendent of Public Instruction (OSPI) in July 2020 issued a guidebook, Reopening Washington Schools 2020: Special Education Guidance, with information for educators and families. Included is a section about “recovery services” to support students who have fallen behind because of the pandemic.

TIP: Collaborate, communicate, keep careful records

Documentation about what is happening with the student is key to discussions about the IEP moving forward and whether the student gets recovery services. Family caregivers and school staff can collect and share notes that address these questions and more:

  • Have educational materials been accessible during distance learning?
  • What learning location will work for this student and the family moving forward?
  • When or how often has the school communicated with the family, and what could improve that communication?
  • Does the student have the tools and technology needed for learning?
  • Where has the student made progress? (any bright spots?)
  • Where has the student lost ground? (any lost skills?)
  • What else needs to be addressed to meet the unique needs of this individual student, so the student can make progress appropriate, in light of the child’s circumstances?

Recovery services are not the same as compensatory services

To determine whether recovery services are needed, OSPI encourages IEP teams to:

  1. review progress toward IEP goals, and
  2. assess progress toward grade-level standards within the general education curriculum.

Both points are standard aspects of a student’s right to a Free Appropriate Public Education (FAPE), protected by the Individuals with Disabilities Education Act (IDEA). The IDEA is the federal law that entitles eligible students to an Individualized Education Program (IEP). IDEA rights are not waived due to COVID-19.

OSPI makes clear that recovery services are part of the school day and are not the same as “compensatory services,” which are educational opportunities provided outside of regular school to make up for IEP services that were not provided even though the student was available to receive them. A student may qualify for compensatory services if it is determined through a dispute resolution process that the standard of a Free Appropriate Public Education (FAPE) was not fully met in the provision of special education.

Recovery services, on the other hand, are considered in the context of the national health emergency that impacted all students and staff within the system. OSPI’s 2020 special education guidance document states: “The extent of a student’s recovery services, if needed, must be an individualized determination made by the IEP team, considering individual student needs, in the context of instructional opportunities provided to all students during the school facility closures.”

TIP: Consider a child’s total circumstances

Keep this in mind: A student with an IEP has the right to FAPE—Free Appropriate Public Education. To meet the standard of FAPE, a school provides an individualized program that is “reasonably calculated to enable the student to make progress appropriate, in light of the child’s circumstances.” That phrase is part of IEP case law, from a 2017 Supreme Court ruling referred to as Endrew F.

A child’s circumstances include, but are not limited to:

  • Strengths, talents, assets
  • Disability
  • Family (work schedules, finances, housing…)
  • COVID-related impacts (distance learning, medical fragility of self or family member, grief from a loved one’s death or economic hardships…)
  • Mental health (impacts of social isolation, loss of friendship connections…)
  • Whatever is true for the individual child!

A key question for all IEP teams: How can we create equitable educational opportunities, in light of all of these aspects of the child’s circumstances?

Section 504 protects students too

The Rehabilitation Act of 1973 also provides FAPE protections, and none of those rights are waived because of COVID-19. Section 504 is part of the Rehabilitation Act, so students who receive support through a Section 504 Plan have civil rights protections under that federal law. Students with IEPs have Section 504 protections in addition to the protections of the IDEA.

School staff and families might discuss whether a student on a Section 504 Plan has made adequate progress within the general education curriculum and whether the accommodations and modifications in the plan are correctly adjusted for the student to access learning in light of the pandemic. Families and schools can discuss what additional supports are needed so the student can access the curriculum equitably.

Recovery services may support academics or social emotional learning

OSPI provides a few examples of recovery services to help families and schools think creatively about what is possible:

  • A student who regressed behaviorally during the closure may need new or different positive behavior interventions during the school day.
  • A student who lacked social skills opportunities during the closure may need additional instruction in social communication.
  • A student who lost academic skills during the closure may need additional supplementary aids and services in the general education classroom.

How and when additional services are provided is up to school/family teams to consider and may depend on the district’s reopening schedule. Some recovery services may be deliverable through distance learning, while others may require schools to be fully open.

Focus on key elements of learning

Within the Inclusionary Practices section of its reopening guidance, OSPI highlights four core areas that support planning and teaching students with disabilities in a variety of learning environments:

  • Family Partnerships and Communication to foster continuity of learning, high expectations, and support to students through shared goals and partnerships between home and school.
  • Student Engagement to maintain knowledge and skills, feelings of connectedness, curiosity, and a love of learning while progressing toward benchmarks and standards.
  • Social-Emotional and Behavioral Supports to create positive learning experiences and shared understanding of expectations to help students achieve learning goals.
  • Instructional Delivery and Universal Design for Continuous Learning to create conditions that make learning accessible, stimulating, relevant and rewarding so students will make academic gains and develop self-determination.

TIP: Parents parent, teachers teach

Parents can consider that first and foremost, their role is to parent. When all schools were in distance-learning mode, the Florida Inclusion Network provided Tips for Families in Supporting Their Children with Disabilities in Virtual Formats. Included is this recommendation:

“It can be confusing for students if families try to assume the role of teacher. Explain to your child that their teacher is still their teacher, and that you are in communication with the teacher to help them learn at home.”

Presume competence and maintain high expectations

OSPI’s resource about special education access in the 2020-21 school year contains a chapter called Inclusionary Practices Across the Continuum of School Reopening Models. The first paragraph states (emphasis added):

“In the context of change, students with disabilities are most successful when educators and families presume competence in what they are capable of learning and accomplishing in school. Rather than view student challenges or inability to meet learning objectives in new and different learning environments as a deficit in the student due to a disability, recognize how instruction or environments may be affecting what a student learns and how they demonstrate what they know.

Students learn best when they feel valued and when people hold high expectations. When students cannot communicate effectively, or behavior impedes participation and learning, explore multiple pathways for understanding and assume students want to learn but may have difficulty expressing their needs.”

Least Restrictive Environment (LRE) encourages inclusion

Federal special education law (IDEA) entitles students to individualized education in the Least Restrictive Environment (LRE) to the maximum extent possible. While education is being provided in a mix of environments, IEP teams may need to think in new ways about how the right to LRE is protected.

The National Association of State Directors of Special Education (NASDSE) issued a policy brief regarding LRE in the wake of COVID-19. The brief includes examples of how LRE might be provided for a student in a virtual, hybrid, or traditional model of school. For example, a fictional 3rd grader with special education services to support learning in math and English Language Arts (ELA) could attend a virtual classroom with all students and receive instruction in break-out rooms with math and ELA teachers at additional times.  

The right to LRE is not waived due to COVID-19. “NASDSE stands ready to support its members with the effort of ensuring all students receive FAPE in the LRE,” the brief concludes.

Language access is protected

Some families face barriers related to language access. Under state and federal law, all parents have the right to information about their child’s education in a language they can understand, and students have a right to accessible learning materials. The Office of Superintendent of Public Instruction (OSPI) provides guidance about language-access rights in multiple languages.

A Continuous Learning Plan may help with organization

A Special Education Continuous Learning Plan is a tool developed by the state in spring 2020 to help IEP teams make contingency plans. The plan does not replace a student’s IEP, but rather documents individual decisions for special education services when a student is not fully attending in-person school.

The plan is part of a downloadable document published April 7, 2020: Supporting Inclusionary Practices during School Facility Closure. Glenna Gallo, assistant superintendent of special education, worked with many agency partners to design the 31-page guidance document. The introductory paragraphs include the following statement:

“Providing equitable access and instruction during these times will require creative and flexible thinking to support continuous learning, where students and educators are in different locations. Educators and families should explore creative ways to respond to diverse languages, cultures, socio-economic status, abilities, and needs.”

Review the Present Levels of Performance

To consider what is most important for learning, regardless of where education is provided, IEP teams can carefully review the present levels of academic achievement and functional performance, which is the first section in a student’s IEP. 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.

PAVE also provides an article and a handout to help families participate in the goal-setting process: IEP Tips: Evaluation, Present Levels, SMART goals.

Request an IEP meeting to clarify how services are provided

Family caregivers can request an IEP team meeting any time there are concerns. For health and safety reasons, the meeting may be virtual, by phone, in a park…. Teams can get creative to meet all needs. PAVE provides an article about requesting a meeting and a letter template to support a written request. An additional article: Quick Look: How to Prepare for a Virtual Meeting.

While reviewing and amending the IEP, the team might consider the “service matrix,” which is the chart on the IEP document that shows how many minutes of each service a student receives, and which school staff are responsible to provide the service. An IEP team might decide to amend the matrix to reflect services provided remotely versus services provided in person at school.

Another option is to document on the IEP matrix the services to be provided when in-person school fully resumes and to use the optional Continuous Learning Plan template to document contingency plans during remote learning.

Before meeting with the school, family caregivers may want to design their own Handout for the Team to share their specific ideas and concerns.

Big Picture goals to consider

OSPI’s guidance includes the following tenets of inclusionary practices:

  • All students feel a sense of belonging and value, as full members of the school community.
  • All students have access to equitable and high-quality, meaningful instruction.
  • Instruction is culturally responsive, and student and family centered.

TIP: When communicating with school staff, families can have these tenets ready and request that each one is addressed somehow through the planning.

Additional ideas to support families

  • If a child is doing school from home, try to set up comfortable, adaptable spaces for learning. Include alternatives to sitting for children who need variety, sensory support or more movement. If the IEP includes accommodations for special seating, consider if those ideas could work at home.
  • On days when school is integrated with home life, establish a schedule that includes breaks (recess/nature walks) and activities of daily living. The amount of academic time needs to consider all impacted family members. Here are sample family schedules: COVID 19 Schedule From MotherlyGet-Organized-Mom.comHomeschool.
  • Make sure each day includes time away from screens to reduce eye strain and fatigue from being in one physical position too long.
  • During academic learning time, limit distractions from siblings, gaming devices, tablets, television shows, etc.
  • Find or create support networks. Some Parent-to-Parent groups are meeting virtually, and individuals can make agreements to check on each other. The Arc of Washington State provides information about regional P2P networks.
  • Be patient with your child, teachers, medical providers, and yourself. No one has ever been here before, and all are trying to figure it out.

PAVE staff are available to provide 1:1 support. Click Get Help at wapave.org to fill out a Helpline Request form. For additional resources related to the pandemic itself, see Links to Support Families During the Coronavirus Crisis.

 

PAVE Events during COVID-19

If a training, parent group, IEP clinic, class or any item on our Calendar of Events needs to be postponed or canceled we will state it here.  Please make sure you check our Calendar of Events regularly for updates.  We will do our best to also share via social media (e.g. Facebook, Instagram, etc.).

During this time, we are following the guidelines with our partner organizations where we host or facilitate our events and their local health department.  Of course, we understand you must make the best decision for you and your loved ones, especially if   they have an underlying medical condition or other high risks according to the CDC.

For all events where we have asked you to register, we will send you any cancellation, change of location, or other notifications directly to the contact information you provided.

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.

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.   

Technology Provides Options for Medical Care from a Distance

A Brief Overview

  • During the coronavirus pandemic and statewide stay-home orders, some providers are offering online appointments. This article includes information about access to telehealth and how to prepare for a virtual visit.
  • Federal privacy laws have been relaxed during the shutdown to allow more opportunities for on-screen healthcare. Washington’s telemedicine parity law was updated by the 2015 legislature. Those updates went into effect in 2017 (SSB 5175).
  • Generally, military families with TRICARE and families with state insurance, Apple Health, have coverage for medically necessary services provided through telemedicine.
  • A 6-minute video tutorial from the Hawaii Department of Health provides information about what to expect during a telehealth session.
  • Washington’s Department of Social and Health Services (DSHS) is providing free cell phones and minutes to low-income families through a federal program called Lifeline. State-specific information about this option is available from the Health Care Authority.
  • See Links to Support Families during the Coronavirus Crisis for additional resources.

Full Article

Families staying home during the coronavirus pandemic need new ways to access medical care. Onscreen appointments—telehealth, telemedicine, teleintervention, telepsychiatry—meet some needs.

The U.S. Department of Health and Human Services (hhs.gov) in early March 2020 relaxed legal requirements related to confidentiality in order to support the delivery of telehealth services while families shelter in place. Roger Severino, director of the Office for Civil Rights (OCR), issued the following statement: “We are empowering medical providers to serve patients wherever they are during this national public health emergency. We are especially concerned about reaching those most at risk, including older persons and persons with disabilities.”

The federal guidance refers to confidentiality rules under the Health Insurance Portability and Accountability Act of 1996 (HIPAA). The HHS website states that OCR will use discretion and relax compliance under HIPAA if services are delivered in good faith:

“During the COVID-19 national emergency, which also constitutes a nationwide public health emergency, covered health care providers subject to the HIPAA Rules may seek to communicate with patients, and provide telehealth services, through remote communications technologies.  Some of these technologies, and the manner in which they are used by HIPAA-covered health care providers, may not fully comply with the requirements of the HIPAA Rules.”

Washington State has grown telehealth since 2015

Even before social distancing requirements, virtual appointments for diagnoses and treatments that don’t require direct physical examination have gained popularity. Before COVID-19 took hold, Washington’s 2020 legislature passed HB 2728 to support further development of children’s behavioral health services delivered through telemedicine.

In order to meet needs in some rural communities and underserved fields, such as psychiatry, Washington’s telemedicine parity law was updated by the 2015 legislature. Those updates went into effect in 2017 (SSB 5175).

The law enables providers to seek reimbursement for most services provided virtually if those same services would be covered by insurance if they were delivered in person. The law defines telemedicine as “the delivery of health care services through the use of interactive audio and video technology, permitting real-time communication between the patient at the originating site and the provider, for the purpose of diagnosis, consultation, or treatment.”

Telephone (“audio only”) services or provider guidance by facsimile (FAX) or email may not be covered. Families can check with their insurance carrier to make sure an appointment would be covered if video could fail during the appointment or is unavailable because of a technology complication.

Generally, telemedicine is covered by insurance if:

  • The payor would cover the service if it was provided in-person, and the service can reasonably be provided without direct contact.
  • The health care service is medically necessary.
  • The service is recognized as an essential health benefit under the federal Patient Protection and Affordable Care Act

Individual providers create their own policies about whether they provide services electronically, and the parity law doesn’t guarantee equal reimbursement. Washington is part of the Interstate Medical Licensure Compact, making it easier for providers to get licensed in multiple states and provide services to a broader clientele, including through telemedicine.

Families with Medicaid in Washington State, which is called Apple Health, can find information related to telehealth from the Health Care Authority. In keeping with federal guidance, Medicaid in general is reimbursing telehealth services at the same rate they would reimburse in-person services during the pandemic.

TRICARE expands options for military families, including ABA

TRICARE provides coverage for medically necessary telemedicine visits from providers who offer that service. Preventive health screenings, psychiatric care and medication consultations are examples of appointments that are most easily held virtually. Depending on the TRICARE plan, an authorization or referral may be needed.

In addition, TRICARE is extending telehealth for families who access Applied Behavior Analysis (ABA) and are enrolled in the Autism Care Demonstration (ACD) March 31- May 31, 2020. This temporary extension includes ABA support to parents/caregivers, and the services don’t require the child to be present at the telehealth appointment.

How do I prepare for a telemedicine appointment?

Before services are rendered, providers are required to seek informed consent from patients and/or legal guardians and to provide information about how the technology works and how privacy is protected. Electronic signatures are generally acceptable, particularly as the state requires social distancing. The Washington State Department of Social and Health Services (DSHS) provides a downloadable guidebook about telehealth

Prepare for a routine check-up like you would if you were visiting the clinic: Write down questions and concerns, including any changes related to health or medication. A visual tutorial, created by the Department of Health in Hawaii, walks through the different types of telehealth and what someone might expect.

If you suspect COVID-19, carefully document symptoms. The Centers for Disease Control (CDC) provide a COVID-19 screening tool. Be sure to note anything about the illness or its possible treatment that might be affected by a disability condition.

If testing is prescribed, a drive-through testing site may be suggested. The Americans with Disabilities Act (ADA) affords individuals the right to accommodations when accessing what is publicly available. The Northwest ADA Center provides guidance about drive-through testing, specifically addressing topics related to blindness, deafness or wheelchair access, for example. Prepare for the telehealth appointment with any questions related to drive-through testing and disability, if that topic might come up.

What if I don’t have internet or a cell phone?

Families who do not have internet at home may be able to get service for free or low cost because of the pandemic. Some internet providers offer free internet for a limited time, based on income. Internet Essentials from Comcast and Charter Communications are examples. Their services are based on income, and students with free and reduced lunches are among those who may qualify.

Washington’s  Department of Social and Health Services (DSHS) is providing free cell phones and minutes to low-income families through a federal program called Lifeline. State-specific information about this option is available from the Health Care Authority.

How can I plan for an in-person doctor visit or emergency?

Children with complex medical needs may still need an in-person doctor visit for some conditions. General guidance is to call ahead if there is concern that anyone in the family might be ill so medical staff can take precautions to protect everyone from exposure to illness. In many locations, individuals are screened and checked for fever before they enter the facility.

For a medical emergency, prepare to offer first-responders clear information about the nature of the emergency. If a member of your household has a chronic condition that may create an urgent care situation, prepare a handout with basic information in advance. PAVE’s article about a Care Notebook might help. Because personal protective equipment (masks, gloves, gowns) are in short supply, responders will send minimal staff for less urgent circumstances. If the situation is clearly life or death, a larger team may suit up with personal protective equipment in order to help.

Many dental offices have closed, although some may remain open for emergency procedures. Call ahead: Schedules and policies are changing rapidly.

Caregivers of children with complex needs face additional challenges

Being the caregiver for a child with significant medical needs adds additional layers to current circumstances. Here are questions some will face:

  • Is my child’s medical need worth the risk of exposure to a hospital setting?
  • What are the short-term and long-term considerations in changing the plan for care during this time of national crisis?

The answers obviously are personal and different for every family’s circumstances.

While facing tough choices and uncertain times, your self-care is critical, and PAVE offers an article with ideas just for you. Of course, start with the basics: breathe with intention, nourish your body and seek points of fun and connection each day. Staying connected to a child’s care team can help, so you’re already in touch if there’s an emergent medical situation.

PAVE’s Family-to-Family Health Information Center continues to provide information for families and caregivers of children with disabilities and special healthcare needs in Washington State. Fill out a Helpline Request Form at wapave.org for individualized assistance.

Stay-Home Help: Get Organized, Feel Big Feelings, Breathe

A Brief Overview

Full Article

Big feelings are happening. We feel them, and we care for others who are having them. Times of uncertainly cause stress that makes big feelings feel bigger. Emotions might seem to run away with all the energy we had left. It can feel hard to breathe, and it’s easy to lose a sense of control over what happens within the span of a day.

Taking time to pause and organize the days ahead can help, especially if mindfulness and breath practices are built into the schedule.

Here’s a to-do list for every day

  1. Have a plan
  2. Be real with big feelings
  3. Breathe

The rest of this article provides ideas about these three strategies. Please note that resources included are not affiliated with PAVE, and PAVE does not recommend or endorse these programs or services.

Organize the day to create predictability

Getting organized with a clear routine is helpful because predictability calms the nervous system, suggests the Collaborative for Academic, Social, and Emotional Learning (CASEL). CASEL offered a webinar in early April to help parents and educators explore Social Emotional Learning (SEL) during the stay-home order related to COVID-19.

A key presenter was Jennifer Miller, founder of Confident Parents, Confident Kids, which  provides an article for parents: Setting up for Homework Success. Miller offers a video describing how to establish a morning routine to give each day a predictable jump-start. She advises families to schedule intentional moments for loving connection throughout each day. For example, one of her family’s rituals is a hallway hug first thing out of bed.

To support children in feeling safe, confident and in control, Miller recommends that adults plan-ahead to speak out loud when they notice children taking care of business: “I notice you are getting dressed…brushing teeth…feeding the dog… all by yourself.”

Predictability, contribution and accomplishment are all feelings that calm the brain and can be part of making and maintaining a family schedule. Miller advises that all members of the family work together to design the plan.

The family’s daily schedule can include a wake-up routine, movement, nature time, academics, rest time, meals and shared cooking/cleaning, screen time, art time, chores, reading, bath time, bedtime…. The schedule can have words and/or pictures and should be posted where everyone can refer to it.

Generally, children respond well to having some built-in choices and a variety of brain breaks. Sample family schedules are easy to search for online; families might prefer to design their own format, just for them.

Here are some places to look for ideas:

  • Mother.ly shares a mom’s family schedule that “went viral” during the pandemic.
  • Get-Organized-Mom.com offers printable forms and samples for how to use them.
  • Adding Homeschool to an online search brings up a wide selection of options, some for free and some with a small cost.

Feel big feelings, and let others feel theirs too

Generally, humans are emotional. We feel, and we respond to what we feel. Squished emotions usually don’t go away but loom larger. Here are a few strategies for being with big feelings:

Talk openly: Big feelings can be more manageable when they are spoken and shared. Ask another person, What are you feeling right now? Listen without judgment or analysis. Here’s one way to respond: Wow, that’s a lot to feel. Tell me more. A Sesame Street program called  Here for Each Other offers a 90-second video posted to YouTube to help adults talk to children about Big Feelings. To help families discuss feelings specifically related to COVID-19, PBS.org provides toolkits in English and Spanish.

Name it to tame it: Dan Siegel, a neuroscientist, recommends calling out emotions in order to manage them. Here’s a short video: Name it to tame it. To make brain science practical, Siegel talks about an upstairs brain and a downstairs brain. When the downstairs brain (emotion) controls the show, the upstairs brain (learning/problem-solving) clicks offline. Here are some ideas for what to do if someone is overwhelmed by emotion:

  • Create a safe physical space: Offer a drink of water, a blanket, a stuffed animal.
  • Keep a kind voice, move slowly, and back away/get low if your energy might feel like a threat (if you are a bigger or have more power, for example).
  • Turn down lights or turn on music if that makes sense for the other person.
  • Say something to simply acknowledge the big feelings: “I understand that (this is hard, makes you mad, scares you…).”
  • Allow enough time for the brain finds a way back “upstairs.”
  • When things are calm, work together to describe the big feelings and the experience of being with those feelings. 

Use pictures to identify emotions: Charts to help identify emotions are easy to find. Here’s a link on Pinterest with dozens of examples of printable or hand-made options. Making a chart together can create learning on many levels. A teacher might have a feelings chart to share.

Notice that feelings aren’t who you are: This strategy is from a meditation technique called Integrative Restoration (iRest.org). Notice a feeling as separate from the bigger picture of who you really are. Here’s a statement to sort that out: I have feelings, but I’m not my feelings. What happens when that statement is made? Is it possible to catch feelings in the act of forming or changing? This can be a conversation you have in your own mind or with another person.

Explore feelings through the body: This technique is common in yoga. Ask someone else or yourself: What feelings are happening right now, and where is the body feeling them? Talk about how a feeling seems to “live” in a certain place—or travel around the body. There is no good, bad, right or wrong way to feel. Give yourself or a family member permission to move around and maybe make sound in a way that safely helps the emotion express itself.  GoNoodle.com offers additional strategies for children to explore movement and mindfulness.

Schedule mindfulness: Make sure that big feelings have time to be seen and heard. According to an article for parents from the Child Mind Institute, “Designating time to practice mindful activities as a family will help everyone feel less anxious. It could be a daily family yoga session, or a quiet walk in the woods as a group, taking time to focus on the way the air feels, the sound of the birds and the smell of the trees. Another good family mindfulness idea is asking everyone to mention one good thing they heard or saw that day over dinner.” The Child Mind Institute provides access to live video chats with clinicians, telemedicine and more. The agency provides guidance in English and Spanish and offers parents an opportunity to sign up for a COVID-19 tip of the day.

Breathe with trees and plants

A calming breath works like a life vest when it feels like emotions are rushing us downriver and threatening to take us under. The basic goal is to regulate the flow of oxygen into the bloodstream and to make sure that carbon dioxide is being expelled in a balanced way. Here’s one idea for a breath that might boost relaxation:

  • Find a place where you can see a tree or a plant. Notice details about the leaves, needles or branches.
  • Note that trees and plants release oxygen into the air.
  • Breathe in gently and feel like the plant or tree is giving oxygen to you.
  • Breathe out gently and consider that your carbon dioxide is the food the tree or plant needs.
  • Experience a moment of being grateful that nature is breathing with you. Say thank you if it feels good to say it out loud.

PAVE provides a 5-minute video to help you breathe with trees and plants!

Feeling panic? Breathe easy and smooth

When anxiety causes feelings of panic, easy is the magic word for breathing. Some evidence suggests that a stressed-out person might feel more anxious by taking breaths that are too slow or deep. Dizziness, shortness of breath and feelings of suffocation can be signs that the gases exchanged during a breath aren’t balanced well. Here’s one source for information about why even breathing might be more calming than a really big, deep breath: LiveScience.com.

Here’s something to practice regularly to help your body find its calm, easy breath:

  • Notice your breath and just watch it for a little bit.
  • Start counting as you inhale and notice how long that lasts.
  • Start to match the inhale count and the exhale count.
  • Don’t try to slow your breath down, but gently try to make each breath about the same, counting the same time on the inhale and the exhale.
  • Don’t work to fill or empty your lungs all the way. Keep it easy.
  • Try breathing evenly for at least a minute—longer if you enjoy it.

Bonus Ideas: Consider whether there’s a young person in your house who could learn this breath, practice and then teach it to someone else. Another idea is for a child to practice breathing with a stuffed animal. On their tummy, the stuffed animal goes for a ride. Being hugged, the animal can feel the breath too.

PAVE hopes the ideas in this article might help your family members organize themselves around days and weeks at home that might nourish everyone with moments of peace, personal growth and learning. Understanding how to be with big feelings and breathe with ease can take a bit of practice, but the result can build emotional resilience. We hope all can find simple ways to make emotional learning and self-care part of each day to support the well-being of all.

If you need direct support in caring for children with special educational or medical needs, please click Get Help from our home page, wapave.org.

For serious conditions related to mental health and to find a professional provider, contact the Washington Recovery Help Line: 866-789-1511.

The WA State Department of Health provides a Behavioral Health Toolbox for Families Supporting Children and Teens During the COVID-19 Pandemic, published in July 2020. Each age-specific section (toddlers, school-age children, teens) includes information on common emotional responses, helping children heal and grow, and managing feelings and behaviors children may experience.