Adolescent Health Care Act Provides Options for Families Seeking Mental Health and Substance Use Help for Young People Resistant to Treatment

A Brief Overview

  • The Adolescent Behavioral Health Care Access Act, passed into law by the Washington Legislature in 2019, gives parents and providers more leverage in treating a young person who will not or cannot independently seek medical help for mental illness and/or substance use disorder.
  • The Washington State Health Care Authority (HCA) hosts website links with information about the new law, which allows Family Initiated Treatment (FIT). The landing page includes an email address: hcafamilyinitiatedtreatment@hca.wa.gov.
  • Enactment of FIT is a project of the state’s Children and Youth Behavioral Health Work Group. CYBHWG supports several sub-work groups, including one focused on school-based services and suicide prevention. Information group membership, public meetings, resources, events and training is available through a dedicated HCA website page.
  • A place to connect with other families concerned about these topics is a Facebook group called Youth Behavioral Healthcare Advocates (YBHA-WA).
  • If a person ages 15-40 is newly experiencing psychosis, Washington offers a wraparound-style program called New Journeys. This website link includes access to a referral form.

Full Article

Getting mental health help for a youth in crisis can be complicated, frustrating, and frightening.

Mental Health America ranks states based on the incidence of mental illness and access to services. The 2021 youth rankings list Washington 35th in the nation. Various measures indicate a high prevalence of major depression, substance use disorder, and/or emotional disturbance as a category of disability on the Individualized Education Program (IEP). Barriers to treatment consider insurance as well as availability of services.  

The 2021 indicators show Washington has risen since 2020, when the youth ranking was 43rd nationally. However, overall statistics are dire, indicating the COVID-19 pandemic has worsened mental healthcare conditions and treatment access across all age groups and states. “Youth mental health is worsening,” the data shows. “Even in states with the greatest access, over 38 percent are not receiving the mental health services they need. Among youth with severe depression, only 27.3 percent received consistent treatment.”

Sometimes a barrier to treatment involves a complicated balance of youth autonomy and parental responsibility. The most severe psychiatric conditions often include a symptom called anosognosia, which blocks the brain’s ability to see the impairment or understand why professional help could be of benefit. In youth whose brains are still forming, symptoms that impact insight and choice-making are particularly problematic.

New Journeys is an option when psychosis is present

Sometimes anosognosia co-occurs with psychosis, which indicates a person has lost touch with reality. Delusions and hallucinations may be present. If a person is newly experiencing psychosis, Washington offers a wraparound-style program called New Journeys: This link provides access to information for clients and families and includes an online referral form.

Causes of psychosis are the subject of ongoing research, but some theories suspect the brain is trying to make sense out of a world that does not make sense. Synapses fire errantly, and the brain tries to organize them into stories to calm itself. Synaptic loops get built during these firestorms of neural activity, and the stories that emerge become reality to the person whose brain is narrating the experience, even if they are untrue or grounded in false perceptions. Choice-making in the empirical world is often compromised.

Family education about psychosis is an aspect of New Journeys, which is for youth and adults ages 15-40 who have experienced psychotic symptoms for more than or equal to 1 week and less than or equal to 2 years. Staff from the University of the Washington contribute support to the state’s New Journeys program, which is offered in various but not all regions of the state.

UW staff also support a program called Psychosis REACH, which provides evidence-based skill-building for relatives and friends of individuals with psychotic disorders. The practices are based in cognitive behavioral therapy (CBT). The program’s website includes information about training opportunities and resources.

Age of Consent in Washington is 13

In Washington State, the age of medical consent is 13. That means that a person 13-17 years old can independently seek medical treatment, without the consent or knowledge of parents.

Age of consent laws also have meant that Washington youth could say no to behavioral health treatment, regardless of whether parents and providers agreed that such treatment was necessary to protect the safety and well-being of the adolescent. Exceptions are made when there is a threat of imminent danger or grave disability due to psychiatric deterioration. Read on for more information about involuntary treatment/commitment.

The Adolescent Behavioral Health Care Access Act, passed by the Washington legislature in 2019, gives parents and providers more leverage when a young person is struggling with behavioral health and does not independently engage with treatment. The law allows parents/caregivers to bring a youth, ages 13-17, to a provider for evaluation without requiring consent from the youth. The law includes elements introduced by the state Senate and House of Representatives, which originally titled the bill as HB 1874. In 2020, passage of HB 2883 added residential treatment as an additional option under Family Initiated Treatment (FIT).

The law does not limit an adolescent’s ability to initiate treatment on their own.

Parents have felt shut out of their teenager’s care

January 8, 2020, article in Crosscut profiles several families impacted by the new law. “Until the new law,” the article states, “parents often were shut out of their teenager’s care and treatment plans and couldn’t push a teen toward necessary outpatient or inpatient care without their consent.”

Passage of FIT marks a win for the Children and Youth Behavioral Health Work Group, which studied and reviewed recommendations from a stakeholder advisory group authorized by the 2018 legislature. Final language in the law was impacted by family members, youth, clinicians, hospital staff and many others who met dozens of times.

“Parent” is broadly defined, and information sharing is more open

Under the law, the definition of parent is expanded to include a wide range of family caregivers, guardians and others who have authority to initiate treatment. The Revised Code of Washington (RCW 9A.72.085) provides standards for “subscribing to an unsworn statement” that can apply to a caregiver initiating treatment. 

The law enables providers to share information with parents without an adolescent’s consent, if the provider determines that information sharing with family is in the best interests of the adolescent patient. A list of information-sharing guidelines is included below.

Note that parents retain the right to make medical decisions for children younger than 13, and adults 18 and older are responsible for medical decision-making if there is no guardianship.

In accordance with RCW 71.34.375, providers are required to provide notice to parents of all available treatment options, including Family Initiated Treatment. The state Health Care Authority provides a fact sheet to clarify those requirements.

Family-Initiated Treatment (FIT)

The FIT law allows a parent/caregiver to escort their adolescent child to certain licensed behavioral health facilities and request that a professional person examine the adolescent to determine whether treatment is medically necessary. That treatment might include outpatient, inpatient, or residential care.

According to the Health Care Authority (HCA), FIT is not a guarantee of immediate services and no provider is obligated to provide services under FIT. Each provider has processes, procedures, and requirements pertaining to evaluation and admission to services. However, the only reason for not providing services cannot be the youth’s lack of consent (RCW 71.34.600).

If a facility covered by this law does not have a professional person available to perform the examination, the facility is not required to make staff available on demand. Additionally, if the professional determines the adolescent needs in-patient treatment but the facility does not have a bed available, the facility is not required to make a bed available. Included are those facilities that house children and youth under the Children’s Long-term Inpatient Program (CLIP). CLIP beds are generally subject to a waiting list and a multi-step referral process.

According to staff at Washington’s Health Care Authority, the COVID-19 pandemic and capacity limitations within the behavioral health system have hindered many providers from fully developing processes to implement the law. Families are encouraged to contact providers before taking an adolescent to a facility to determine if the provider has the capacity or ability to perform an assessment.

FIT in a community setting

If medical necessity is found by an outpatient provider who evaluates a young person brought into care through FIT, the provider is limited to 12 sessions over 3 months to attempt to work with the adolescent. If the young person still refuses to engage with treatment, then the period of Family-Initiated Treatment with that provider ends. The family at that point could seek treatment elsewhere.

State laws continue to encourage autonomy for young people, despite recognition that family involvement is important. According to the Revised Code of Washington (RCW 71.34.010):

 “Mental health and chemical dependency professionals shall guard against needless hospitalization and deprivations of liberty, enable treatment decisions to be made in response to clinical needs in accordance with sound professional judgment, and encourage the use of voluntary services. Mental health and chemical dependency professionals shall, whenever clinically appropriate, offer less restrictive alternatives to inpatient treatment. Additionally, all mental health care and treatment providers shall assure that minors’ parents are given an opportunity to participate in the treatment decisions for their minor children.”

For children and youth with Medicaid, the Wraparound with Intensive Services (WISe) program is Washington’s most intensive option for outpatient care. The Health Care Authority (HCA) maintains a website page with information about WISe in multiple languages. Families can discuss their options for FIT with WISe staff and leadership at HCA.

FIT in a hospital setting

An inpatient or residential facility can detain the adolescent under Family-Initiated Treatment (FIT) if medically necessary for a mental health condition. In these settings, FIT may last up to 30 days. Then the adolescent must be discharged, unless:

  • they agree to stay voluntarily, or
  • a designated crisis responder (DCR) initiates involuntary commitment proceedings

The Involuntary Treatment Act (ITA) can apply to persons of any age who are determined to be gravely disabled or at imminent risk of harm to self, others, or property. Under Ricky’s Law, community members of any age who are a danger or gravely disabled due to a drug or alcohol problem may beinvoluntary detained to a secure withdrawal management and stabilization facility—also known as secure detox.

For substance use disorder treatment, due to Federal Privacy Laws, a parent/caregiver can only provide consent for an assessment. The youth would have to consent to the results of the assessment being shared with their parent/caregiver and volunteer for ongoing treatment if it is deemed medically necessary.

Guidance for Information Sharing

Federal law, 42 CFR Part 2, restricts information sharing related to substance use, and clinicians cannot share that information without a patient’s written consent, regardless of whether the substance use co-occurs with mental illness.

Providers have discretion in determining what information about mental health diagnoses and treatment is clinically appropriate to share with parents of an adolescent 13-17. A provider retains discretion in withholding information from family/caregivers to protect an adolescent’s well-being. In general, however, the Adolescent Behavioral Healthcare Access Act encourages sharing information to support collaboration between the clinical setting and home. Specifically, providers and families are encouraged to discuss:

  • Diagnosis
  • Treatment Plan and Progress
  • Recommended medications, including risks, benefits, side effects, typical efficacy, dosages, and schedule
  • Education about the child’s mental health condition
  • Referrals to community resources
  • Coaching on parenting or behavioral management strategies
  • Crisis prevention planning and safety planning

To support family caregiving for individuals of all ages, the Washington State Hospital Association provides general guidance about exceptions to federal confidentiality laws (HIPAA): Permitted disclosures of mental health information and substance use disorder information without patient consent.

Resources

The  Health Care Authority (HCA) provides a range of information about behavioral health services for children and youth, including this downloadable resource: Parent’s Guide to Family Initiated Treatment.

Families can direct specific questions to: hcafamilyinitiatedtreatment@hca.wa.gov. Please note that this business email is not intended for crisis response.

An agency called CaseText organizes links related to Family Initiated Treatment for direct access to various statutes.

Families with Disability Concerns Take Extra Care when Planning for Emergencies

A Brief Overview

  • All families prepare for emergencies, but extra planning is critical when a loved one has a disability.
  • The Family-To Family Health Information Center provides Information about COVID-19 and updates about local, regional, and statewide healthcare policies and programs.
  • Virginia Commonwealth University offers an Emergency Preparedness Tool Kit for People with Disabilities through its university center called Partnership for People with Disabilities. The downloadable, 29-page booklet includes checklists and resources.
  • The Federal Emergency Management Agency (FEMA), an agency of the United States Department of Homeland Security, also provides a downloadable brochure: Preparing Makes Sense for People with Disabilities.
  • Military families, each installation has a Comprehensive Emergency Management Plan (CEMP 10-12). Read on for links to specific military resources.
  • This article includes a variety of resources and ideas about how to be informed and organized, with a disability-specific toolkit and emergency plans that are ready to roll if something unexpected does occur.

Full Article

COVID-19 has highlighted a need for emergency planning, and Washington State families might consider additional contingencies to plan for: winter snowstorms, flooding, wildfires, volcanoes, earthquakes…. The planning can alleviate stress and create a sense of confidence that a plan is in place for everyone’s safety if something unexpected does occur.

To be fully prepared, a family may need an emergency plan and a survival kit to support to a loved one with additional needs that are specific to a disability. Following are guidelines for getting organized and ready, with each person’s individualized needs in mind.

While building an emergency plan and toolkit, families may need to consider how to include tools and strategies for providing a sense of comfort and safety for individuals with anxiety, sensory needs, or behavioral challenges. A favorite blanket, stuffed toy, or noise cancelling headphones might be part of the kit. A handheld electronic device might provide a sense of normalcy; if one is included, be sure chargers or batteries are also part of the toolkit.

Gathering the toolkit ahead of time can enhance a sense of calm and save time when quick action is needed. Family to Family Health Information Center at PAVE has a page set up with tools and links around disability and special healthcare needs.

Be informed

Some disaster scenarios include sheltering in place, and others require movement to a safe location. The Red Cross provides information on a page titled Be Informed to help determine which types of emergencies are most likely in a designated community. Some areas are more prone to forest fires, floods or earthquakes, for example. Consider whether local public systems share information or alert the public if something is happening or about to happen. Will there be a telephone alert or a broadcasted siren? Will there be an emergency broadcast to tune in? The Emergency Alert System (EAS) includes a statewide list of radio stations that broadcast emergency alerts by area.

Consider whether there are shelters nearby, or an evacuation route. The Red Cross encourages people to download the agency’s mobile app to receive local alerts that can include emergency-specific instructions in real time. The agency also provides a page dedicated to disaster safety that takes a step-by-step approach for people with disabilities. Included are guidelines for creating a personal assessment and registering with a local emergency assistance program.

You can also download the FEMA app to get weather alerts from the National Weather Service for up to five different locations.

Make a plan

Create escape routes that are accessible to everyone within the household. Choose a meet-up spot after everyone has evacuated the home, property, or neighborhood. Consider accessibility based on the entire family’s needs: For example, will someone need to arrive at the meet-up spot by wheelchair? If someone will need a helper to evacuate, designate a helper and a back-up person to provide that support.

Tell emergency contacts about the family’s plan. Consider telling neighbors or nearby friends about where medications or mobility assistance devices (crutches, wheelchairs, walkers) are stored in case help is needed to get those things. The plan includes what may happen before, during and after a disaster.

The Red Cross provides a template for a 3-step plan, to be shared and verified with everyone who might be involved or recruited to help:

  1. All household members discuss how to prepare and respond to the types of emergencies most likely to happen where they live, learn, work and play.
  2. Identify responsibilities for each member of the household and plan a way to work as a team.
  3. Practice as many elements of the plan as possible.

Military Families

Military families may have unique and specific concerns. Each installation provides support for a Comprehensive Emergency Management Plan (CEMP 10-12). Additionally, families might seek assistance from the family support office through the Exceptional Family Member Program (EFMP) or a Family Resource Specialist (Coast Guard).

Here are additional places to seek information about emergency planning for military families:

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

A Brief Overview

  • 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 are still in place, without waivers. PAVE provides an article: Early Intervention: How to Access Services for Children Birth to 3 in Washington.
  • Students retain the right to access high-school transition and vocational rehabilitation services. PAVE provides an article: Ready for Work: Vocational Rehabilitation Provides Guidance and Tools.
  • 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.

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.”

Keep notes about student learning

Schools and families are encouraged to keep notes about student learning and access to educational services. 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.”

IEP and Section 504 meetings are encouraged, and teams can discuss whether Recovery Services are needed to make up for services not provided or accessible due to the circumstances of the pandemic. Documentation from families and schools will support conversations about what was needed and what was provided. Families can collect and share their own observations about progress toward goals and whether materials provided by the school have been accessible.

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 coronavirus pandemic, families with students of all ages and abilities are figuring out strategies for coping with the disruptions. This article may provide some help: How to Get Organized, Feel Big Feelings, and Breathe during the crisis.

PAVE provides ongoing 1:1 support. Fill out a Helpline Request online or call 800-572-7368. Language access services are available.

IDEA: The Foundation of Special Education

A Brief Overview

  • The Individuals with Disabilities Education Act (IDEA) is a federal law that entitles children to special education services if disability significantly impacts access to education and a specially designed program is needed.
  • Key concepts are from the Education for All Handicapped Children Act, passed in 1975. The United States celebrated 45 years of special education law Nov. 29, 2020. In recognition, the Office of Special Education Programs (OSEP) offers an historical infographic: OSEP Fast Facts: IDEA 45th Anniversary.
  • The IDEA is unchanged during the pandemic. Although education is delivered in a variety of new ways, student rights and protections are intact. For more information, PAVE provides a training video: Student Rights: Special Education During COVID-19 and Beyond.

Full Article

The Individuals with Disabilities Education Act (IDEA) is a federal law that was passed in 1990 and has been amended. The IDEA provides children with qualifying disabilities, from birth to age 21, with the right to a free public education that is specifically designed to meet their unique, individual needs.

Key concepts came from the Education for All Handicapped Children Act, passed in 1975. That was the first United States law that required schools to provide special education services to all children with eligible disabilities. PAVE has an article about special education history.

This article provides an overview of the IDEA, which is unique as a law that provides an individual entitlement. Entitlement means that a child with unique needs gets those needs served on an individual basis, not based on a system or program already built and available. The strengths and challenges of a specific student are assessed, and a team including family members and professionals works together to design a program.

No rights are waived due to COVID-19

The IDEA drives how states design their own special education policies and procedures. Title 34, Part 104 is the non-discrimination federal statute under the Office for Civil Rights Department of Education. In Washington State, rules for the provision of special education are in Chapter 392-172A of the Washington Administrative Code (WAC).

No federal or state laws are altered because of the COVID-19 pandemic. Although education is being delivered in a variety of new ways, all student protections and special education rights are intact.

FAPE is an important acronym to learn!

The first principle of the IDEA is the right to a Free Appropriate Public Education, FAPE. Figuring out how to provide FAPE is the work of an Individualized Education Program (IEP) team that includes school and family.

The local school district is responsible to provide FAPE through an IEP, which includes specially designed instruction, services, accommodations, and anything else that the team identifies as necessary to provide the student with education that is accessible, equitable and appropriate.

Part of FAPE is ensuring that the student finds meaningful success, in light of the circumstances. If a neighborhood school cannot provide the services and programming to guarantee FAPE within the general education classroom, then the school district is responsible to create a program within a placement that does meet the student’s needs. Keep in mind that Special Education is a Service, Not a Place: see PAVE’s article with that statement as its title.

The IDEA considers the whole life of a person with a disability

The IDEA is written in three parts: A, B and C. The right of a child with disabilities to receive an education that prepares that child for adult life is stated in Part A: ​

“Disability is a natural part of the human experience and in no way diminishes the right of individuals to participate in or contribute to society…

“Improving educational results for children with disabilities is an essential element of our national policy of ensuring equality of opportunity, full participation, independent living, and economic self-sufficiency for individuals with disabilities.”

Part B of the IDEA covers children ages 3 through 21—or until graduation from high school. Students who receive services through an Individualized Education Program (IEP) are covered under Part B. The six principles listed at the end of this article describe IDEA’s Part B protections.

Part C protects children Birth to age 3 who need family support for early learning. ​The disability category of developmental delay overlaps early learning and IEP and can qualify a child for free, family-focused services to age 3 and school-based services through age 9. PAVE has an article: Early Intervention: How to Access Services for Children Birth to 3 in Washington.

To qualify for an IEP, a student meets criteria in one of the IDEA’s 14 disability categories:

  • Autism: A student does not need a medical diagnosis to be evaluated by the school. If features from the autism spectrum may significantly impact access to learning, then the school can assess those features to determine eligibility and special education needs.
  • Emotional Disturbance: Psychological or psychiatric disorders (anxiety, depression, schizophrenia, post-traumatic stress, etc.) can fall under this category, which Washington schools often refer to as Emotional Behavioral Disability (EBD). Please note that all eligibility categories are intended to identify the needs of students and are not intended to label children in ways that might contribute to stigma or discrimination.
  • Specific Learning Disability: Issues related to dyslexia, dysgraphia, dyscalculia, or other learning deficits can be educationally assessed. A formal diagnosis is not required for a student to qualify under this category. A Washington law taking full effect in 2021-22 requires schools to screen for dyslexia: See PAVE’s article about dyslexia.
  • Other Health Impairment: ADHD, Tourette’s Syndrome and other medical diagnoses are captured within this broad category, often shorted to OHI or Health-Impaired on the IEP document.
  • Speech/Language Impairment: This category can include expressive and/or receptive language disorders in addition to issues related to diction (how a student is able to produce sounds that are understood as words). Social communication deficits also might qualify a student for speech services.
  • Multiple Disabilities: Students with complex medical and learning needs can meet criteria in this category.
  • Intellectual Disability: A student with Down Syndrome or another genetic or cognitive disorder might meet criteria in this category.
  • Orthopedic Impairment: OI refers to physical disabilities that impact access to education.
  • Hearing Impairment: Whether permanent or fluctuating, a hearing impairment may adversely affect a child’s educational performance.
  • Deafness: A student unable to process linguistic information through hearing, with or without amplification, may be eligible for services under this category.
  • Deaf blindness: A combination of hearing and visual impairments establishes a unique set of special education service needs.
  • Visual Impairment/Blindness: Partial sight and blindness may fit this category when, even with correction, eyesight adversely affects a child’s educational performance. Washington State’s Department of Services for the Blind (DSB) is an agency that provides youth and adult services for individuals who are blind or low vision.
  • Traumatic Brain Injury: Brain Injury Alliance of WA is a place for resources to better understand TBI and how to support a student with medical and educational needs.
  • Developmental Delay (ages 0-8): This category can qualify a child for early learning (Birth-3) services in addition to IEP services through age 8. By age 9, a new evaluation may determine eligibility in another category for IEP services to continue.

Educational evaluations ask 3 key questions

The disability must have an adverse impact on learning. Not every student who has a disability and receives an evaluation will qualify for an IEP. Following procedures described by the IDEA, school districts evaluate students to consider 3 key questions:

  1. Does the student have a disability?
  2. Does the disability adversely impact education?
  3. Does the student need Specially Designed Instruction (SDI)?

When each answer is yes, a student qualifies for services. In each area of eligibility, specialized instruction is recommended to help the student overcome the impact of the disability to access FAPE. PAVE provides various articles about the evaluation process, including a sample letter to refer a student for services.

IDEA’s Primary Principles:

  1. Free Appropriate Public Education (FAPE): Students with disabilities who need a special kind of teaching or other help have the right to an education that is not only free but also appropriate, designed just for them. Under IDEA rules, schools provide special education students with “access to FAPE,” so that’s a common way to talk about whether the student’s program is working.
  2. Appropriate Evaluation: The IDEA requires schools to take a closer look at children with potential disabilities (Child Find Mandate). There are rules about how quickly those evaluations get done. The results provide information that the school and parents use to make decisions about how the child’s education can be improved.
  3. Individualized Education Program (IEP): An IEP is a dynamic program, not a packet of paper or a location (Special Education is a Service, Not a Place). The program is reviewed at least once a year by a team that includes school staff and family. Every student on an IEP gets some extra help from teachers, but the rest of the program depends on what a student needs to learn. Areas of need may be academic, social and emotional skills, and/or general life skills. By age 16, an IEP includes a plan for life beyond high school, and helping the student make a successful transition into life after high school becomes a primary goal of the IEP.
  4. Least Restrictive Environment (LRE): The IDEA says that students should be in class with non-disabled classmates “to the maximum extent appropriate.” Regular classrooms and school spaces are the least restrictive. If the school has provided extra help in the classroom but the special education student still struggles to access FAPE, then the IEP team considers other options. The school explains placement and LRE in writing on the IEP document. PAVE has an article about LRE.
  5. Parent and Student Participation: The IDEA and state regulations about IEP team membership make it clear that parents or legal guardians are equal partners with school staff in making decisions about their student’s education. When the student turns 18, educational decision-making is given to the student. The school does its best to bring parents and students into the meetings, and there are specific rules about how the school provides written records and meeting notices (WAC 392-172A-03100).
  6. Procedural Safeguards: The school provides parents with a written copy of their rights at referral and yearly thereafter. A copy of the procedural safeguards is available online from the Office of Superintendent of Public Instruction (OSPI), the guidance agency for Washington schools. Parents may receive procedural safeguards from the school any time they request them. They also may receive a copy if they file a complaint with the state. Procedural safeguards are offered when a school removes a student for more than 10 days in a school year as part of a disciplinary action. When parents and schools disagree, these rights describe the actions that a parent can take informally or formally.

PAVE provides information, resources and, in some circumstances 1:1 support through our Parent Training and Information (PTI) center. To get help, reach out through our Help Request Form or by calling 800-572-7368.

Child Find: Schools Have a Legal Duty to Evaluate Children Impacted by Disability

A Brief Overview

  • School districts have an affirmative duty to locate, evaluate and potentially serve any infant, toddler or school-aged student impacted by disability under the Child Find Mandate — part of special education law.
  • The duty to evaluate is based on a known or suspected disability that may significantly impact access to learning. Data from evaluation then determines eligibility. Washington’s Office of Superintendent of Public Instruction (OSPI) has state specific information about Child Find.
  • PAVE recommends making referrals in writing and provides a sample letter.
  • Public school districts provide evaluations and special education services at no cost to the family.
  • Child Find is intact during the pandemic, as are all student rights and protections. For more information, PAVE provides a training video: Student Rights: Special Education During COVID-19 and Beyond.

Full Article

Family caregivers, teachers, or anyone else can refer a child for an educational evaluation if there is reason to suspect that a disability is impacting that child’s ability to learn. The local school district provides a comprehensive evaluation, free to the family, if there is a known or suspected disability and reason to believe that appropriate early learning or school success requires intervention.

The school district’s duty to seek out, evaluate and potentially serve infants, toddlers or school-aged students is guaranteed through the Individuals with Disabilities Act (IDEA), as part of the Child Find Mandate. The law says that this obligation to evaluate exists for all children ages 0-21, regardless of whether they:

  • Attend private or public school
  • Are housed in a stable way or are homeless
  • Live with a birth or adopted family or are a ward of the state

Receiving adequate marks and “passing from grade to grade” does not erase the school’s responsibility to evaluate. Impacts to all areas of school and learning are considered. Academic challenges might trigger an evaluation. So can school refusal, communication deficits, missing social skills, trouble with emotional regulation and behavior challenges.

Children in private and home-based schools are protected by Child Find

Parents have the right to request an evaluation from the public-school district regardless of whether a child attends public school. If the child is found eligible, the local district is responsible to provide services unless the family does not want them. In some cases, families arrange to have a child attend private or home-based school but receive special-education services through the public school. Private schools do not have to evaluate children or provide special education, but they are responsible to provide equitable services and to comply with the Americans with Disabilities Act. See PAVE’s article about navigating private school.

The IDEA includes categories of disability that might qualify a student for special education services at a public school. PAVE has an article about IDEA and additional articles with information about evaluation process.

Request an evaluation in writing

PAVE’s Parent Training and Information (PTI) staff recommend that families request evaluation formally—in writing. Specific deadlines apply in the evaluation process. Washington districts have 25 school days to decide whether to evaluate. After parents sign consent, staff have 35 school days to complete the evaluation.

sample letter to request evaluation is available on PAVE’s website. The Office of Superintendent of Public Instruction (OSPI) provides more detail about state requirements. A national agency called Wrightslaw has additional information about Child Find.

The Child Find Mandate requires states to implement programs to locate children who might need more support, particularly those who might need services as infants or toddlers. Child Find is written into the IDEA in “Part C,” which protects children 0-3 with known or suspected disabilities in need of early intervention. However, Child Find applies to all children who might need services—through age 21 or until high-school graduation.

Testing determines whether the child has a disability that is causing learning delays. For very young children, this includes a known or suspected disability that might delay learning. For a child younger than 3 in Washington State, early intervention is provided with an Individualized Family Service Plan (IFSP). PAVE’s website includes an article with more information about early intervention services and the transition to school-aged services at age 3.

For a child ages 3-21, an evaluation determines whether a disability is significantly impacting access to school and whether specially designed instruction is necessary for the student to access learning at school.

Schools use data to determine whether a child is eligible for services

The duty to evaluate is based on a known or suspected disability that may significantly impact access to learning. Data from evaluation then determines eligibility. Washington’s Office of Superintendent of Public Instruction (OSPI) has state specific information about Child Find.

The referral process includes a review of existing data about a student. Existing data might include information from families, medical providers and anyone who can discuss a child’s performance at public school, preschool, private school, at home or in another setting. Based on this data, the district decides whether to evaluate. Often the decision is discussed at a “referral meeting” with school staff and parents. If a school district refuses to evaluate, family caregivers can request an explanation in writing and have the right to dispute that decision by exercising Procedural Safeguards.

Child Find requires schools to do outreach

School districts operate Child Find programs in a variety of ways. For example, a school might:

  • Train teachers to recognize signs that a student might need to be screened
  • Publish, post and distribute information for parents so they can understand how to request evaluation and why a child might benefit from services
  • Offer workshops or other trainings to parents about evaluation, early intervention and special education

When should the caregiver for a young child be concerned?

If parents do not think their child is growing or developing like other children the same age, they can request an educational evaluation, even if a pediatrician says there is no cause for concern. The national Center for Parent Information and Resources (CPIR website: ParentCenterHub.org) provides a list of developmental milestones to help parents recognize potential delays.

Early intervention can be critical. Parents can contact their local school district or seek more information and assistance from Early Support for Infants and Toddlers (ESIT), managed by Washington’s Department of Children, Youth, and Families (DCYF).

To determine whether early intervention is needed, an evaluator considers:

  • Physical skills (reaching, crawling, walking, drawing, building)
  • Cognitive skills (thinking, learning, solving problems)
  • Communication skills (talking, listening, understanding others)
  • Self-help or adaptive skills (eating, dressing)
  • Social or emotional skills (playing, interacting with others)
  • Sensory processing skills (handling textures, tastes, sounds, smells)

The evaluator uses natural situations to look at these skills while a child stacks blocks, draws, counts, cuts with scissors, jumps, or performs other activities. Testing time varies, and parents can ask how much time was spent, which settings were reviewed, and who conducted the review.

Parents can decide whether they agree with the results and whether they believe the evaluation was appropriate. “Appropriate evaluation” is protected by special education law, the IDEA, as a primary principle. Parents who disagree with the results of an evaluation—or a school’s decision to not evaluate—have the right to dispute decisions through a variety of informal and formal processes, described in Procedural Safeguards.

Birth-3 services are provided through an IFSP

If an evaluation determines that a child requires early intervention, then those services are provided through an IFSP. Early intervention services might include speech and language therapy; physical therapy; psychological services; home visits; medical, nursing, or nutrition services; hearing or vision services.

In most cases, services are provided in the home or in a child-care setting. The goal is for services to take place in the child’s “natural environment.” Occasionally a child may visit a provider’s office for specialized services.

What does an older child’s evaluation look like?

Educational evaluations for children 3-21 are conducted in consultation with a team that includes parents, teachers, special education professionals and school district administrators and evaluation specialists who can interpret and explain the results.

The assessments can look like academic tests, questionnaires, or informal observations. There are no right or wrong answers, and the evaluators are looking for clues that might show an area of need for different or specialized instruction. A comprehensive evaluation can measure a child’s ability to:

  • Think, reason and problem-solve
  • Understand spoken language
  • Explain ideas and speak clearly
  • Understand facial expressions and body language
  • Use facial expressions and body language to express emotion
  • Remember what they hear and understand different sounds
  • See differences in pictures and designs, remember what they see, and understand those visual images
  • Use body parts with physical skill
  • Get along with other people
  • Read, write, spell, and do math
  • Hear and see

Parents can provide a health history and notes and diagnoses from medical providers that contribute outside information to be considered as part of the assessment.

The Down Syndrome Guild of Greater Kansas City provides a comprehensive list of commonly used assessments for a variety of disability conditions.

Help for children 3-5 years old

Children ages 3-5 with identified disabilities can receive free special education and related services at preschools run by the local public-school district or through federal Head Start or the state-run Early Childhood Education and Assistance Program (ECEAP). Often these preschools are specifically designed for children with disabilities, so inclusion with general education students may be limited.

Once a student enters the local public school for kindergarten, specialized instruction may be provided in general education by special educators who “push in” with support in the classroom. The IDEA requires education in the Least Restrictive Environment (LRE) to the greatest extent possible with typically developing peers. Special education is a service, not a place: See PAVE’s article with that slogan as its title.

Some children do not thrive in typical classrooms. The IEP team, including the parent, may determine that a smaller classroom or “pull out” instruction is needed for the student to make meaningful progress. These decisions are documented in the IEP.

Related services can support parent training

“Related services” might include speech-language therapy, occupational therapy, mental health counseling or special transportation to school or extracurricular activities. Training about positive behavior interventions for family caregivers, school staff and children also could be provided as a related service. Students who are enrolled in a private or home school may be dually enrolled in public school to access related services provided through an IEP.

During the pandemic, some extra attention has been paid to parent training as a related service in order for parents to understand how to support children learning from home.

What happens if a doctor or teacher refers a child for evaluation?

Any adult knowledgeable about a child’s condition can refer that child for evaluation. If a person outside the family makes the referral, parents get a formal written notification about the referral. Parents must sign consent for an evaluation process to begin.

Parents/guardians do not have to give permission. Parents who refuse to give permission have the right to request an evaluation later.

If school staff refer a student for an evaluation and parents do not want their child evaluated, the school district may ask parents to participate in mediation to further discuss the decision. If parents still refuse to sign consent, a school district can begin a legal procedure called Due Process to have the case considered by an administrative law judge. Through this process, a district may be allowed to screen a child for special education without parent consent.

If a student does not qualify for IEP services, a Section 504 Plan might help

A student who is evaluated and determined ineligible for special education might still qualify for some support with a Section 504 Plan. Section 504 defines disability much more broadly than the IDEA, and a student can qualify for support if an identified disability significantly impacts a major life activity, such as learning or socializing with peers.

Educational evaluations identify barriers to education, so schools can figure out how to help children make meaningful progress. Sometimes special education is provided to help with access to academic learning, and sometimes it is needed for a child to build functional skills or to develop more skill in Social Emotional Learning. When requesting a full and complete evaluation, parents can ask questions and provide feedback to make sure the school evaluates in all areas of suspected disability and that the tools for evaluation are comprehensive and varied.

Sometimes a child comes to the attention of the school because of unexpected behaviors that might lead to disciplinary actions. PAVE’s article, What Parents Need to Know when Behavior Impacts Discipline at School, has additional information for families who might be requesting an educational evaluation because of behavior incidents.

Holiday Survival Tips For Families with Special Healthcare Needs

Holidays provide a mix of social situations and emotions, and the COVID-19 pandemic adds elements that look a little different for every family. This article provides ideas for celebrating and finding points of joy, with specific tips for those impacted by special healthcare needs.

Here are the quick takeaway topics:

  • Break the routine: Although travel or a gathering with extended family might not be possible, take a break from everyday routines to share moments that feel special.
  • Plan and save surprises too: Mix up the activities so the children can help with some planning but there are also surprises.
  • Wise men staying afar? Get creative to create social contact through media and other means.
  • Handle with care: If you travel, make a careful plan for health and safety.
  • Families need a village: Asking for help from those who also care for your child can strengthen the ability to cope and enjoy the season.
  • Gratitude keeps giving: Moments of thankfulness calm the mind.

Read on for more detail!

Break the routine, but keep the comfort

Families have been home a lot in 2020, so staying home during the holiday might feel like more of the same. Seek ways to add sparkle to the holidays by doing some things the family does not always have time for: cooking or baking together, singing, story time by the fireplace, games, checking for signs of Santa or sending notes to the North Pole or other special places.

WestEd.org, a California-based nonprofit committed to equity for learners of all ages, provides a guidebook with practical support for family caregivers during stay-at-home orders. Caring for Young Children While Sheltering in Place provides quick links to activity videos (story-based yoga, for example, with winter and holiday themes), easy-to-learn songs, arts-and-crafts, sensory play, cooking with kids, and much more. Choosing a couple of developmentally appropriate ideas for each special day might add just the right amount of sparkle to a holiday staycation!

Some families struggle to keep children nestled all snug in their beds in any season. Maintaining a sleep schedule can certainly minimize challenging behaviors. However, if appropriate, a “Holiday” sleep schedule with an extra hour of special family time before bed might add a fun flavor of flexibility for some families. For others, sleeping in or staying in jammies longer than usual might create a relaxing holiday feel. Be sure to call out these relaxed rules as holiday specials so everyone understands they are temporary changes and part of the “break.”

Silver bells, strings of streetlights and some of the holiday hustle is still happening. Drive through light shows and virtual celebrations for Christmas, Hanukkah, and Kwanzaa are popping up online. One tradition that has always been virtual is the NORAD Santa tracker, which keeps tabs on Santa’s business on Christmas Eve and has kid-centered games and songs.

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

Plan and save surprises too

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

  • How I celebrated when I was a kid
  • Christmas 1820, 1720, etc.
  • Holiday food, decorations, stories, music, etc. from another culture

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

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

Wise men staying afar?

If the household is staying isolated from family and friends to slow the spread of COVID-19, getting socially connected might require a bit of creativity. Of course, video teleconferencing or video phone calls are options. Letters and cards can be sent and received by mail, email, text, video…

Someone might drop by to deliver a singing telegram from a safe distance. Special messages can get written on front windows or shared by signs placed strategically inside or outside where someone will look. In-the-car parades or celebration drive-by events work for some people, while others can meet safely in outdoor spaces.

Consider who needs to connect, what messages need to be shared, and how to make the contact meaningful, whatever the format.

Handle with Care

For families choosing to travel, bags with medication and equipment need to include plenty of masks, hand sanitizer and sanitizing wipes. Plan extra supplies to accommodate unexpected delays and follow health and safety guidance related to the COVID-19 crisis.

If plans include planes and trains, be sure to let agents and attendants know about a family member’s special accommodation needs. Washington travelers can make preflight preparations from Sea-Tac Airport by sending an email to: customerservice@portseattle.org. The phone number for the Spokane Airport Administrative Offices: (509) 455-6455. Amtrak provides a range of Accessible Travel Services.

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

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

Families need a village

No holiday is ever perfect, and unrealistic expectations can cause a celebration to sour. As always, ask for support from family, friends, doctors, and therapists—perhaps virtually—to reinforce positive messages and realistic expectations. Saying no can be nice, so choose what works and toss the guilt if the family needs to pass on a tradition or an invitation.

As always, remember to plan self-care, whether it is a soak in the tub, a special movie with popcorn, or simply a few pauses for five steady breaths. A caregiver is always stronger when that oxygen mask is well secured!

Gratitude is a gift

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

Families experiencing loss or grief may need more outside support. The Dougy Center, Stoney Brook, and New Hope Grief provide resources to help children and families manage loss and grief.

“Remembering the person who died is part of the healing process,” the Dougy Center site advises. “One way to remember is simply to talk about the person who died. It’s okay to use his/her name and to share what you remember. You might say, ‘Your dad really liked this song,’ or ‘Your mom was the best pie maker I know.’”

Talking openly about the loss might add an important element to a family’s unique and heart-felt holiday.

Respite Offers a Break for Caregivers and Those They Support

A Brief Overview

  • Respite offers a short-term break for caregivers and those they support. This article provides information and resources to get started seeking respite services.
  • Lifespan Respite Washington, a program of PAVE, provides vouchers with up to $1,000 per qualifying household, to fund respite care.
  • Pathways to Respite, an online booklet published by several Washington agencies, provides further guidance. The guidebook defines caregiver stress and explains why breaks are critical to everyone’s well-being.
  • The ARCH National Respite Network and Resource Center provides a free, downloadable 17-page guidebook, ABCs of Respite: A Consumer Guide for Family Caregivers. ARCH stands for Access to Respite Care and Help. The ARCH resource center also provides information and resources specific to Respite During COVID-19.
  • Veteran’s families may qualify for respite through the Program of Comprehensive Assistance for Family Caregivers (PCAFC), operated by the United States Department of Veterans Affairs. The final section of this article includes additional military-specific resources.

Full Article

Modern families come in many styles. Primary caregivers may be parents, and they might be other relatives (kinship providers), friends, or neighbors. “Care recipient” is a term for anyone who requires assistance for daily living. “Caregiver” refers to anyone who provides regular assistance to a child or adult with a chronic or disabling conditions.

Caregivers and care recipients develop unique rhythms and relationships. Sometimes, both need to press pause and reset. Pathways to Respite, an online booklet published by several Washington agencies, provides guidance about caregiver stress:

“Putting the needs of everyone else before your own may solve an immediate stress; however, in the long-term, it can lead to increased anxiety, frustration, overwhelming feelings, resentment, depression, burnout, and even illness. Whether you think of yourself as a caregiver or not, these are all signs of caregiver stress.”

Respite offers a short-term break for caregivers and those they support. Time apart can boost well-being for all: While caregivers temporarily shift their focus to self-care, care recipients have time to meet new people and explore new interests.

Finding an appropriate respite service and organizing payment can feel challenging. This article provides guidance to simplify the steps.

Check standards and safety measures

When researching a respite agency, caregivers can assess whether the agency meets standards and is following appropriate safety measures, especially during the COVID-19 pandemic.

Lifespan Respite Washington provides a checklist with questions to consider. Here are a few examples:

  • How are the workers selected and trained?
  • Can the respite worker administer medications or assist with medical tasks?
  • If the provider will be driving the care recipient, do they have a valid driver’s license?
  • How are emergencies and problems handled?
  • What safety measures are in place to protect against COVID-19?

Registered, publicly funded respite providers are required to meet certain standards and qualifications, including background checks and training. The public agency that pays for the service is responsible to track and share information about those procedures and quality measures. If respite is paid for by private medical or long-term care insurance, providers must meet the insurance company’s standards. Caregivers can ask an insurance company representative to explain the standards and how they are upheld.

The ARCH National Respite Network and Resource Center provides a free, downloadable 17-page guidebook, ABCs of Respite: A Consumer Guide for Family Caregivers. ARCH stands for Access to Respite Care and Help. The ARCH resource center also provides information and resources specific to Respite During COVID-19.

What respite services would be most helpful?

Respite includes a broad range of services. Some organizations offer short-term, overnight stays in their facilities and some provide daytime services. Some respite services are delivered into the home, including these examples:

  • personal hygiene care
  • meal preparation
  • light housekeeping
  • companionship, activities, or supervision

Community Living Connections (CLC) provides an online assessment to help caregivers figure out what type of help they may want or need. Washington State’s CLC is part of a national collaborative that includes the U.S. Department of Health and Human Services, the Veterans Administration, and the Centers for Medicare & Medicaid Services.

Washington’s Pathways to Respite booklet includes “fill-in-the-blanks” tools to help define needs, including the following example:

“I would like to take a break, but I am concerned that___________” and “If I had some time to myself, I would _____________.”

Pathways to Respite was developed by Informing Families, a resource of the Washington State Developmental Disabilities Council, in partnership with the Washington State Developmental Disabilities Administration, Aging & Long-Term Support Administration, and PAVE, which administers Lifespan Respite WA.

Determine payment to choose a provider

If a family will pay directly for respite services, providers are easily found online. Here are some suggestions to launch a search:

  • Adult Day Services Washington State
  • After-school programs children with special health care needs Washington State
  • In-home respite care Washington State

Another way to navigate the provider system is to connect to a website managed by SEIU 775:  The Service Employees International Union is comprised of independent service providers who have a collective bargaining agreement with Washington state’s Department of Social and Health Services (DSHS).

If a care recipient is eligible for respite through private medical insurance, the insurance company will list approved providers.

Publicly funded respite programs also provide lists of registered providers. Family caregivers who have respite funding through Medicaid or the Developmental Disabilities Administration (DDA) can use CarinaCare.com, an online tool to connect individuals with providers. A Who’s Who page describes provider credentials.

Vouchers are available from Lifespan Respite WA

Lifespan Respite WA provides information about how to apply for a voucher. Vouchers are “mini-grants” for unpaid caregivers supporting a family member, friend or neighbor who has a special need or condition. The vouchers, up to $1,000 per qualifying household, can be used with any of the registered Lifespan Respite Providers

To qualify, the caregiver or care recipient cannot be enrolled in a respite or Medicaid personal care program. (Exceptions are made for persons on a waiting list and not scheduled to get respite services within 30 days of applying for a Lifespan voucher.) Additionally, a caregiver must:

  • Be unpaid
  • Provide 40 or more hours a week of care
  • Not receive respite from any other program
  • Live in Washington State
  • Be unable to afford to pay privately for respite care

Who qualifies for free or low-cost respite care?

In Washington State, eligibility for free or low-cost respite services may depend on a person’s circumstances or the category of disability.

  • Seniors and Adults with Disabilities
    • Seniors 65 and older who meet functional and financial eligibility can receive a variety of services through Home and Community Services (HCS).
    • Unpaid caregivers of adults 55 and older who meet functional and financial eligibility can receive respite care and other needed support services like caregiver education, support groups, housework and errands and other services.
  • People with Developmental Disabilities (All Ages) and Children with Disabilities
    • Children and adults with developmental disabilities who meet eligibility criteria for Developmental Disabilities Administration (DDA) may be able to receive respite, personal care, assistive technology, community engagement support, and other services provided through Home and Community-Based Services and Community First Choice (CFC).
    • Children with disabilities who are not DDA eligible may still be able to receive CFC through DDA.

How to apply:

Foster care respite

Respite care is available for foster parents licensed by the Division of Licensed Resources (DLR), a Tribal agency, or a Child Placing Agency (CPA). Unlicensed relative caregivers or those determined to be “suitable person placements” also can receive respite, as can caregivers assigned by the Department of Children, Youth, and Families (DCYF) or a Washington Tribe. 

Child Specific Respite (CSR) is linked directly to the medical, behavioral, or special needs of an individual child. CSR authorizes respite relief to families providing care to a child placed by DCYF on a case-by-case basis, consistent with the written service plan for the child.

Veterans and Military Family Caregivers

Veteran’s families may qualify for respite through the Program of Comprehensive Assistance for Family Caregivers (PCAFC), operated by the United States Department of Veterans Affairs. PCAFC offers up to 30 hours of respite: Program options, eligibility and the application process are described in a downloadable booklet published Oct. 1, 2020.

The Elizabeth Dole Foundation and the U.S. Department of Veterans Affairs offer Respite Relief for Military and Veteran Caregivers, no-cost, short-term relief with the help of in-home care professionals. See Hidden Heroes for further information.

Active-duty military and Activated Reserve or National Guard family caregivers may be eligible for respite care through TRICARE, the military healthcare system. Here are resources for military family caregivers:

  • Respite care for primary caregivers of service members injured in the line of duty can be found on the TRICARE website.
  • Extended Care Health Option (ECHO) can be a respite resource for caregivers of non-military family members.
  • Some installations have respite funding available when the care recipient is enrolled in the Exceptional Family Member Program.
  • Coast Guard family caregivers have the Special Needs Program which may offer respite or funding for respite:
  • Coast Guard Mutual Assistance has Respite Care Grants available for eligible Coast Guard clients who have responsibility 24 hours per day to care for an ill or disabled family member who lives in the same household.

Home for the Holidays: The Gift of Positive Behavior Support

A Brief Overview

  • This article provides examples and simple guidance about how to be more strategic in parenting a child who struggles with behavior—during the weird winter of 2020 and beyond.
  • PAVE consulted with University of Washington positive behavior support expert Kelcey Schmitz for this article.
  • Anticipating trouble and making a best guess about the behavior’s “purpose” is a great place to start.
  • Listen and look for opportunities to praise expected behavior. It’s easy to forget to pay attention when things are going well, but keeping the peace is easier if praise is consistent while children are behaving as expected.
  • Read on to gift the family with a plan for improving holiday happiness.

Full Article

Holidays can be challenging for families impacted by disability, trauma, grief, economic struggles, and other stressors. Holiday season 2020 has its own flavors of confusion. Families with children who struggle with behavior may want to head into the winter with plans in place. Anticipating where trouble could bubble up and developing a strategy for working it out provides all family members with opportunities for social-emotional growth, mindfulness, and rich moments.

PAVE consulted with a University of Washington (UW) expert in positive behavior supports to provide insight and information for this article. Kelcey Schmitz is the school mental health lead for the Northwest Mental Health Technology Transfer Center, housed at the UW School Mental Health Research and Training (SMART) Center. An area of expertise for Schmitz is Multi-Tiered Systems of Support (MTSS), a framework for schools to support children’s academic, social, emotional, and behavioral strengths and needs at multiple levels. An MTSS framework makes room for Positive Behavioral Interventions and Supports (PBIS). When done well, PBIS teaches and reinforces positive social skills, communication strategies and “restorative justice” (working it out instead of punishing).

“This holiday season may present additional challenges given the pandemic,” Schmitz says. “Families, like educators, need to go back to the basics during times of stress and uncertainty. Remembering core features of PBIS at home, such as predictability, consistency, safety, and positive interactions are going to be key. In fact, lessons learned during stay-at-home orders during the pandemic can and will carry us through the holidays and beyond. Never before have routines, regulation, relationships, and reinforcement been more important for everyone in the family than they will be this winter.”

Schmitz has provided articles and content to support PAVE families over the years and offers the following tips for navigating the holidays by using PBIS strategies at home.

Make a list and check it twice to know what troubling behaviors are about

Whatever the holidays mean and include, family routines can shift. Food can look and taste different. The house may be decorated in a different way. School takes breaks. Weather changes, and sunrise and sunset are closer together.

Children may struggle with changes in routines, different food items on the menu, overstimulating environments, long periods of unstructured activities, or sensory issues that make long pants, socks, gloves, coats, and hats feel like shards of glass.

Keep in mind that all behaviors serve a purpose; they are a way for the child to solve a problem. Without appropriate social skills, children will do what is necessary to have their needs met in the quickest way possible. However, adults who can predict problem behaviors may also be able to prevent them.

TIP: Anticipate trouble and make a best guess about the motivation

Set your child (and family) up for holiday success by thinking ahead about the types of routines and situations that might be challenging. Craft a plan to intervene early, before a full-blown escalation.

Create a best guess statement to better understand the relationship between an unwanted behavior and the child’s environment. Summarize what usually happens by describing:

  • The behavior (tantrum, hitting, refusal)
  • Circumstances that set the stage (what’s going on right before the behavior?)
  • What happens after the behavior (time out, angry adults, something removed or given)
  • A best guess about the child’s motivation/the “purpose” of the behavior (to get something or get out of something)

Here is an example:

At Grandma’s holiday gathering, an adult encourages a child to try a food, demands a “please” or “thank you,” or scolds the child. Note if the child is tired, hungry, or uncomfortable in an unusual or unpredictable situation. These are the circumstances that set the stage.

The child cries and yells loud enough to be heard in another room (description of the behavior).

During the child’s outbursts, others leave her alone (what happens after the behavior).

Best guess about the purpose? The child may want to avoid unpleasant people, food, or situations.

Making a good guess about what causes and maintains the behavior (crowded or overstimulating environment, being rushed, being told they can’t have or do something they want, different expectations, demands, exhaustion, hunger) can support a plan and potentially avoid worst-case scenarios.

Determining the purpose or function of a behavior may require a closer look at what typically happens (what others say or do) after the behavior occurs. The behavior may be inappropriate, but the reason for it usually is not.  Most of the time there is a logical explanation. Here are some questions to help think it through:

  • Does the child get something–or get out of something?
  • Does the child generally seek or avoid something, such as:
    • Attention (from adults or peers)?
    • Activity?
    • Tangibles (toys/other objects)?
    • Sensory stimulation?

Make a list and check it twice: Prevention is key

Many behaviors can be prevented using simple proactive strategies. Adults can use their best-guess statement to build a customized strategy. Here are some starter ideas that might help prevent or reduce the intensity, frequency, or duration of unwanted behaviors:

  • Make sure the child is well rested and has eaten before going out.
  • Bring food that is familiar and appealing.
  • Anticipate challenges, and plan accordingly.
  • Pre-teach family expectations (respectful, responsible, safe) and talk about how those expectations work at grandma’s house: “When someone gives you a present, say thank you and smile at the person who gave you the gift.” For information about developing family expectations, see PAVE’s article, Tips to Help Parents Reinforce Positive Behaviors at Home.
  • Encourage the child to bring a comfort item (toy, book, blanket).
  • Give more “start” messages than “stop” messages.
  • Teach a signal the child can use to request a break.
  • Create a social story about family gatherings; review it regularly.
  • Rehearse! Practice/pretend having a meal at Grandma’s house, opening gifts, playing with cousins, and other likely scenarios.
  • Arrive early to get comfortable before the house gets crowded.
  • Create a visual schedule of events, and let the child keep track of what’s happening or cross off activities as they happen.

Respond quick as a wink: Reward replacement behavior

An essential prevention strategy is teaching what to do instead of the unwanted behavior. “What to do instead” is called replacement behavior. To be effective, the replacement behavior needs to get results just as quickly and effectively as the problem behavior.

For example, if a child learns a signal for taking a break, adults need to respond to the signal just as fast as they would if the child starts to scream and cry.

Responding quickly will strengthen the replacement behavior and help make sure that the unwanted behavior is no longer useful.

Here are steps to help teach replacement behaviors:

  1. Demonstrate/model the wanted behavior
  2. Provide many opportunities for practice
  3. Let the child know they got it right (as you would if they learned a skill like riding a bike, writing their name, or saying their colors)

Praise a silent night

Inspect what you expect. Listen and look for opportunities to praise expected behavior. It’s easy to forget to pay attention when things are going well, but keeping the peace is easier if praise is consistent while children are behaving as expected.

Evidence indicates that children’s behavior improves best with a 5:1 ratio of positive-to-negative feedback. Increasing positive remarks during difficult times—such as holidays and pandemics—might reduce escalations.

Provide frequent, genuine, and specific praise, with details that help encourage the specific behavior being noticed. For example, say, “You did a nice job sharing that toy truck with your cousin!”

All is calm: Intervene at the first sign of trouble

Be ready to prompt appropriate behavior, redirect, or offer a calming activity when there are early signs of agitation or frustration.

  • Provide early, clear instructions about “what to do instead,” using language and modeling consistent with what was pre-taught and practiced (see above).
  • For example, if a child is getting frustrated, say, “Remember, you can give me the peace signal if you need a break.”
  • Redirect the child to another activity or topic when appropriate and practical.
  • Hand the child a comfort item (stuffed animal, blanket).
  • Show empathy and listen actively: “It seems like you’re having some big feelings right now. Want to talk about it?” After listening, maybe say, “Wow, that’s a lot to feel.”

Do you hear what I hear? Heed alarm bells when plans need to shift

Not all challenging behaviors can be prevented, and adults may overestimate a child’s ability to control emotions. A child experiencing significant distress may be unable to process what is going on around them and follow what may seem like simple instructions.

If an adult’s best efforts are unable to prevent or diffuse a behavior escalation, a graceful exit may be the best strategy. It’s important for adults to remember that a child’s crisis isn’t their crisis. An adult’s ability to remain level-headed is critical, and children may ultimately learn from the behavior they see modeled.

Wait for a child to calm down before addressing the issue: An overwhelmed brain is not able to problem solve or learn. Later, everyone can review what worked or did not work in order to adjust the strategy for next time.

Believe: Be a beacon for hope

Support a child to learn, practice, and perform behaviors that enable fun, rich family experiences. The work may feel challenging—and the scale of the project may be impacted by a unique set of tough circumstances—but expecting and accepting the challenge enables the whole family to move toward new opportunities. Trust that the work will pay off—and relish the moments of success, however large or small. Believe that consistency and predictability can make a big impact this holiday season and beyond.

Here are a few points to review:

  • What might seem fun and relaxing to adults, could be overwhelming and upsetting to children.
  • Children are more likely to exhibit the behavior that will most quickly get their needs met, regardless of the social appropriateness.
  • Acting out is typically a symptom of an underlying issue – it’s important to examine the root of the problem for long-term positive results.
  • Prevention strategies and intervening early can be very effective, but they are often underutilized. Plan ahead to eliminate, modify, or neutralize what might set off behavior.
  • Support wanted behaviors by teaching them, practicing them, modeling them, and making them consistent sources for praise and encouragement.

Resources:

COVID-19 Handbook and Family Binder (multiple language options) from the Autism Intervention Research Network on Behavioral Health (airbnetwork.org)

The Comprehensive, Integrated Three-Tiered Model of Prevention (ci3t.org) provides videos and other COVID-Related Resources for Families in English and Spanish

The Center on Positive Behavioral Interventions and Supports (PBIS.org) provides a downloadable booklet (English and Spanish) for Supporting Families at Home with PBIS

Parent Training Modules from Vanderbilt University’s Center on the Social and Emotional Foundations for Early Learning (CSEFEL), available in English and Spanish

YouTube video interview with Mark Durand, author of Optimistic Parenting: Hope and Help for You and Your Challenging Child

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.