Tag: disability

Myth and Misunderstanding in Special Education

Posted on by Nicol Walsh

A Brief Overview

  • Everyone has moments when they hear something and pause to wonder, Is that true? This article and its companion videos describe some special education topics that may be misunderstood. Included is an explanation of what is fact.
  • Topics relate to special education eligibility, placement, support personnel, bullying, student discipline, and more.
  • Read on to see if there are things you haven’t quite understood about your student’s rights or educational services. PAVE hopes to empower families with information to make sure students with disabilities have their best chance for an appropriate and meaningful education.
  • The final myth described in this article is that PAVE provides advocacy on behalf of families—we don’t! But we can help you learn to be your child’s most important advocate. Click Get Help at wapave.org to request 1:1 assistance.

Full Article

Everyone has moments when they hear something and pause to wonder, Is that true?

Parents/caregivers in meetings with their child’s school can feel particularly confused when something doesn’t sound right. They might wonder whether it’s appropriate to question school authorities. They might not understand all the words being spoken. Fear of not knowing something can make it uncomfortable to speak up.

At PAVE, we encourage families to ask questions and make sure they understand the words school staff use. Ask for important answers in writing, and plan to research explanations that are confusing.

For example, if you ask for something and the school says no because of a law or policy, ask for a written copy of the relevant parts of that law or policy. Try to understand the school’s reason for saying no. Write down what you understand and send a reflective email to school staff to make sure you understand their position correctly.

Having everything in writing is important, especially if filing a complaint is a possible next step.

This article describes myths and misunderstandings some people might experience when navigating school-based services for students with disabilities. These topics apply to students with Individualized Education Programs (IEPs), students with Section 504 Plans, and students with possible disability conditions impacting their educational access.

Parent Participation

MYTH: The school must hold a meeting without a parent if the parent is unavailable before an annual renewal deadline because the student’s IEP, 504 Plan, or eligibility will expire or lapse.
FACT: Parent participation is a higher priority than deadlines. Schools are required to accommodate parents/caregivers to ensure their attendance and participation at meetings where their child’s special education services are discussed. Those rights are affirmed in a court decision from 2013: Doug C. Versus Hawaii. If a meeting is delayed because a family member is temporarily unavailable because of illness, work, travel, or something else, services continue uninterrupted until the meeting. PAVE provies an article: Parent Participation in Special Education Process is a Priority Under Federal Law.

Evaluation

MYTH: The school is not required to evaluate a student who gets passing grades.
FACT: If there is a known or suspected disability condition that may be significantly impacting a student’s access to any part of their education—academic, social-emotional, behavioral, or something else—then the school district is responsible under Child Find to evaluate the student to determine eligibility for services and support. Child Find is an aspect of federal law, the Individuals with Disabilities Education Act (IDEA).

MYTH: Section 504 doesn’t apply for a student without a plan or program.
FACT: Section 504, which is part of the federal Rehabilitation Act of 1973, includes protections for students with suspected or known disability conditions that warrant evaluation. For example, if a student consistently misses school for reasons that may be connected to disability, the school may be accountable under the civil rights protections of Section 504 if an evaluation referral isn’t initiated.

MYTH: Section 504 eligibility does not involve an evaluation.
FACT: An evaluation process is required to determine whether a student has a disability condition impacting a major life activity. That evaluation process may include a review of grades, test scores, attendance, health room visits, parent and student input, teacher observations, medical or psychological evaluations, special education data, medical information, and more. If the student meets criteria, evaluation documents are used to support the design of accommodations and other individualized supports to ensure equity. The state provides a family-friendly handout, downloadable in multiple languages, to describe 504 eligibility, evaluation process, plan development, and civil rights complaint options.

Medical Diagnosis

MYTH: A student cannot be identified as eligible for services under the autism category unless they have a medical diagnosis of autism.
FACT: If there is a suspected disability condition and reason to believe there is a significant educational impact, the school is responsible under Child Find to evaluate the student to determine eligibility for services. Schools have evaluation tools to determine characteristics of autism, its possible educational impacts, and student needs. Medical information might help an IEP team design interventions, but families are not required to share medical information with the school, a medical diagnosis is not required, and doctors may not “prescribe” an IEP.

Placement

MYTH: Special Education is a location within the school.
FACT: Special Education is a Service, Not a Place, and PAVE provides an article by that title to further explain a student’s right to educational services in general education—the Least Restrictive Environment (LRE)—to the maximum extent appropriate.

MYTH: The school district is in charge of placement decisions.
FACT: The IEP team determines a student’s placement. If placement in general education, with support, is not meeting the student’s needs, the IEP team is responsible to locate or design a placement that best supports the student in accessing their Free Appropriate Public Education (FAPE). Placement might be general education, a segregated classroom setting where special education services are provided, day treatment, alternative learning environment, residential, home-based, something else, or a combination of any of these options. Once an IEP team designs a placement, the school district has some leverage in choosing a location. For example, if an elementary-age student who is struggling to read needs individualized services from a reading specialist, the district might bus them to a school in another neighborhood where a specially trained teacher provides reading instruction in a smaller classroom. The district doesn’t have to offer every placement or service within every building, but it does need to serve the IEP as written by the IEP team.

MYTH: Preschool IEPs are not required to serve students in the Least Restrictive Environment to the maximum extent appropriate.
FACT: An IEP is required to serve a student with a Free Appropriate Public Education (FAPE) in the Least Restrictive Environment (LRE), to the maximum extent appropriate, regardless of age or grade level. WAC 392-172A-02050 provides specific language about state requirements for LRE, including for preschool students.

Adult Aids at School

MYTH: A 1:1 creates a “restrictive environment” for a special education student.
FACT: Least Restrictive Environment (LRE) refers to placement. A helper is an aid, not a placement. Supplementary aids and services, including 1:1 support from an adult staff member, may support access to the Least Restrictive Environment (LRE) for some students. If having a 1:1 enables a student to appropriately access learning in the general education setting, then that support is provided to ensure FAPE (Free Appropriate Public Education). FAPE within LRE is required by federal special education law, the Individuals with Disabilities Education Act (IDEA).

MYTH: Support personnel should regularly rotate in their roles to ensure a student does not become “dependent” on specific individuals or relationships.
FACT: Healthy interpersonal relationships enable humans of any age to feel safe and secure. Because of the way our brains work, a person doesn’t learn well when a fight/flight nervous system response is activated. Connecting to trusted adults and receiving consistent help from safe, supportive people enhances learning. PAVE provides a collection of articles about Social Emotional Learning (SEL) and Washington State’s SEL Standards.

Section 504

MYTH: A 504 Plan is a watered down IEP.
FACT: Section 504 is part of a civil rights law called the Rehabilitation Act, passed by the US Congress in 1973. The anti-discrimination protections of Section 504 apply to any person identified as having a disability condition that impacts their life in a significant way. Public agencies, including schools, are responsible to provide individualized accommodations and support to enable the person with a disability to access the service, program, or building in a way that affords them an equitable chance to benefit from the opportunity. A 504 Plan at school ensures the right to a Free Appropriate Public Education (FAPE). Section 504 FAPE rights are upheld by the US Department of Education’s Office for Civil Rights. PAVE provides a video series: Student Rights, IEP, Section 504 and More.

MYTH: Section 504 doesn’t apply to a student with an IEP
FACT: Section 504 protections apply to students with IEPs and those with Section 504 Plans. The civil rights protections of Section 504 are threaded throughout the IEP, especially within sections that describe accommodations and modifications. Section 504 includes specific provisions to ensure students are not discriminated against within student discipline, by unmitigated bullying, or through denial of support that is needed for access to what non-disabled students access without support. All aspects of school are protected, including athletic events, field trips, enrichment activities, specialized learning academies, and more—everything the school is offering to all students. PAVE provides a comprehensive article about Section 504 and its protections for all students with disabilities.

MYTH: If the student has found ways to cope with their disability, they don’t need support.
FACT: Section 504 forbids schools from using “mitigating measures” to justify denial of evaluation or support. A mitigating measure is a coping mechanism—for example, a deaf student who reads lips or a student with an attention deficit whose symptoms are improved by medication. PAVE’s article about Section 504 provides more detail about mitigating measures.

Bullying

MYTH: The best way to help a student with a disability who is being bullied is to remove them from the bully’s classroom.
FACT: Section 504 protects a student with disabilities in their right to be protected from bullying. That means the school must stop the bullying and support the victim to feel safe again. Schools may not punish or disadvantage the victim. OCR says: “Any remedy should not burden the student who has been bullied.” PAVE provides a video: Bullying at School: Key Points for Families and Students with Disabilities.

MYTH: An informal conversation is the best way to address bullying.
FACT: The best way to hold a school accountable to stop bullying and support the victim is to file a formal HIB Complaint. HIB stands for Harassment, Intimidation, and Bullying. Washington State’s 2019 Legislature passed a law that requires school districts to write formal HIB policies and appoint a HIB Compliance Officer to spread awareness and uphold the laws. Families can contact their district’s HIB Compliance Officer for support with a complaint and to ensure student civil rights are upheld.

IEP Goals and Process

MYTH: An IEP provides education to a student with a disability.
FACT: An IEP is not the student’s education. An IEP provides educational services to enable a student to access their education. IEP goals target areas of learning that need support in order for the student to move toward grade-level curriculum and learning standards. Included are services for academics, adaptive skills, social-emotional skills, behavior—all areas of learning that are impacted by disability.

MYTH: If an IEP team agrees to change something about a student’s services or placement, the team must submit that idea to the district for approval or denial.
FACT: An IEP team has decision-making authority. The team is required to include a person knowledgeable about district resources (WAC 392-172A-03095) so decisions about program and placement can be made at the meeting. If a required IEP team member is not in attendance, the family participant must sign consent for the absence. The family can request a new meeting because a key team member, such as a district representative, is missing. PAVE provides more information and a Sample Letter to Request an IEP meeting.

Behavior and Discipline

MYTH: A Functional Behavioral Assessment (FBA) is used to figure out how to discipline a student more effectively.
FACT: An FBA is an evaluation focused on behavior. It helps IEP teams understand the needs behind the student’s behavior. A Behavior Intervention Plan (BIP) is built from the FBA to provide positive behavioral supports, teach new or missing skills, and reduce the need for discipline. PAVE provides a video about the FBA/BIP process.

MYTH: A school isn’t responsible to track exclusionary discipline if a parent agrees to take the child home and no paperwork is filed when the school calls to report a behavior incident.
FACT: “Off books” or informal suspensions count as exclusionary discipline for students with disabilities. If a student with a disability misses more than 10 cumulative days of school because of their behavior, the school is responsible to hold a manifestation determination meeting to decide whether the behaviors are directly connected to the disability and whether school staff are following the IEP and/or behavior plan. If services or placement need to change, this formal meeting is a key opportunity to make those changes. PAVE provides a video: Discipline and Disability Rights: What to do if Your Child is Being Sent Home.

Privacy

MYTH: A parent or provider who visits school to support or evaluate an individual student is violating the privacy rights of other students just by being there.
FACT: Federal laws protect private medical or educational records. Visiting a classroom or other school space should not expose student records for inappropriate viewing. The Department of Education provides a website page called Protecting Student Privacy to share resources and technical assistance on topics related to the Family Educational Rights and Privacy Act (FERPA). The confidentiality of medical records is protected by the Health Insurance Portability and Accountability Act (HIPAA). Understanding HIPAA and FERPA can help parents /caregivers ask their school for documented explanations whenever these laws are cited as reasons for a request being denied.

Literacy

MYTH: Schools cannot provide individualized instruction in reading through a student’s IEP unless the student is diagnosed by a medical provider as having dyslexia.
FACT: No medical diagnosis is needed for a school to evaluate a student for any suspected disability that may impact access to learning and school. An educational evaluation might show that a student has a Specific Learning Disability in reading, with characteristics of dyslexia. When a disability that impacts education is identified through evaluation, the school is responsible to provide services to meet the identified needs and enable appropriate progress. PAVE provides an article: Dyslexia Screening and Interventions: State Requirements and Resources and a video: Supporting Literacy for Students with Learning Disabilities.

Graduation

MYTH: The school has to withhold credits for a student to receive services beyond a traditional senior year.
FACT: Credits do not need to be withheld, and a student doesn’t automatically earn a diploma by reaching the required number of credits. The IEP team determines the target graduation date for a student receiving services through an IEP and how transition programming for a student ages 18-21 might support learning and life planning. Receiving the required number of credits is only part of what a student needs to earn a diploma, and the IEP team individualizes a plan for the student with a disability to earn their diploma within the state’s options for graduation pathways. PAVE provides a Toolkit for life after high school planning.

Private School and Home School

MYTH: Public schools do not have to do anything for students with disabilities who are home schooled or enrolled in private schools by parent choice.
FACT: Child Find applies to all students with known or suspected disabilities who live within a district’s boundaries, including those who are home schooled or enrolled in private schools. Child Find means the public district is responsible to seek out and evaluate all students with known or suspected disabilities. If the student is found eligible for services, parents/caregivers can choose to enroll the student in the public school to receive special education services, even if the primary educational setting is a private or home placement. If the student is fully educated in the private setting, by parent choice, the private school provides equitable services.

Parent Support from PAVE

MYTH: PAVE gives the best advice and advocates on behalf of families.
FACT: PAVE does not give legal advice or provide advocacy. We support families in their work.  Staff from our Parent Training and Information (PTI) program provide information and resources to empower family advocates. Our goal is to ensure that family advocates have knowledge, understand options, and possess tools they need to work with schools to ensure that student rights are upheld and the needs of students with disabilities are met. Click Get Help at wapave.org to request 1:1 assistance. Help us help you by reading your student’s educational documents and having those documents handy when you connect with us!

Surrogate Parents Support Unaccompanied Students in Special Education

Posted on by Nicol Walsh

A Brief Overview

  • Parent participation in IEP process is a protected right for students with disabilities. If a student doesn’t have a family caregiver or legal guardian to advocate in their behalf, a surrogate parent is assigned to fill that role.
  • A surrogate parent is not paid and cannot be employed by the school system, or any other agency involved in the care or education of the child.
  • The provision for a surrogate parent is part of federal special education law, the Individuals with Disabilities Education Act (IDEA Section 300.519).

Full Article

If a student eligible for special education services does not have a family caregiver, adoptive parent, or other legal guardian fulfilling the role of parent, then a surrogate parent is assigned to ensure the student’s rights are protected. The surrogate parent fulfills the family caregiver role on a student’s Individualized Education Program (IEP) team and advocates to ensure the student’s needs are met.

A surrogate parent is an individual appointed by the public agency (usually a school district) responsible for the student’s special education services. Schools are responsible to assign a surrogate parent within 30 days after recognizing the need. Note that a child who is a ward of the state may be assigned a surrogate parent by the judge overseeing their case.

If a private individual, such as a neighbor or friend, has explicit written permission from the student’s parent or guardian to care for the student, a surrogate parent is not required.

A student 18-21 is responsible for their own educational decision-making unless they have a guardian to exercise their legal rights. A school district is responsible to assign a surrogate parent for a student declared legally incompetent or if an adult student with a disability asks for a surrogate parent.

A surrogate parent is required for a minor student when the parent cannot be identified or located or if parental rights have been terminated. A student’s parents are considered to be unknown if their identity cannot be determined from a thorough review of the student’s educational and other agency records.

A student’s parents are considered unavailable if they cannot be located through reasonable effort that includes documented telephone calls, letters, certified letters with return receipts, visits to the parents’ last known address, or if a court order has terminated parental rights. A parent is also considered unavailable if unable to participate in the student’s education due to distance or incarceration.

If a parent is too ill to participate at a meeting, either in person or by phone, that parent has the option of giving another individual written permission to act for them.

An uncooperative or uninvolved parent is not the same as an unavailable one.  A surrogate parent is not assigned because parents choose not to participate in their child’s education.

A child identified as an unaccompanied homeless youth by the McKinney-Vento Homeless Assistance Act is an example of a student who would be assigned a surrogate parent to support them within the special education system. Children with surrogate parents might live in foster homes, nursing homes, public or private group homes, state hospitals, or correctional facilities.

In some cases, a state agency has guardianship of a student with a disability: That student requires the assignment of a surrogate parent. 

Foster parents need to be formally appointed by the school as surrogate parents if they do not have legal guardianship. Relatives without formal kinship rights also can be designated as surrogate parents within the special education process.

A surrogate parent is not paid and cannot be employed by the school system, or any other agency involved in the care or education of the child. However, an unaccompanied homeless youth may be supported by appropriate staff from an emergency shelter, street outreach team, or other agency temporarily until a surrogate parent with no conflict of interest is appointed.

A surrogate parent must have knowledge and skills that ensure adequate representation of the student. A community volunteer, guardian ad litem, or other invested adult might serve as a surrogate parent. The surrogate parent must commit to understanding the student’s strengths and needs and how the educational system is structured to support the student’s services. Ideally, the surrogate parent lives near the student and is a match for providing culturally appropriate help in the student’s language.

The surrogate parent represents the student in all matters relating to special education identification, evaluation, and placement and works to ensure that the student receives a Free Appropriate Public Education (FAPE) from their school-based services.

The provision for a surrogate parent is part of federal special education law, the Individuals with Disabilities Education Act (IDEA Section 300.519).

Washington’s Office of Superintendent of Public Instruction (OSPI) includes some downloadable resources about the surrogate parent in its Special Education Resource Library.

PAVE is here to help all caregivers, including surrogate parents. For direct assistance, click Get Help to complete an online Help Request Form.

Respiratory Disease Health Advisory

Posted on by Nicol Walsh
Respiratory Disease Health Advisory scroll to get more information

Description of the above graphic:

Washington State is experiencing an overwhelming number of children and babies being hospitalized for respiratory diseases. The CDC has issued a Health Advisory for the state as the rise in the Flu, Respiratory Syncytial Virus (RSV), and COVID pushes the limits of pediatric hospitals.

Protect children by making sure that they are up to date on flu shots and COVID boosters. Vaccinations reduce the severity of an infection if a child is exposed.

Remember lessons learned in the first COVID surges. Wear masks in crowded spaces. Wash hands frequently and use hand sanitizer to reduce the risks of infection.

What should you do?

If your infant or child is sick, here are some online resources to help: Seattle Children’s Bronchiolitis Care Packet at seattlechildrens.org and get information at kidshealth.org.

If your child is on Apple Health, here are the nurse support line numbers:

Amerigroup (AMS) 1-866-864-2544

Community Health Plan (CHPW) 1-866-418-2920

Coordinated Care (CCW) 1-877-644-4613

Molina Health Care (MHC) 1-888-275-8750

United Health Care (UHC) 1-877-543-3409

Download this information as a PDF

Life After High School: Tools for Transition

Posted on by Nicol Walsh

Helping a student with disabilities prepare for life after high school requires thoughtful organization and planning. This presentation describes three ways to support this important time of life:

  1. High School and Beyond Plan
  2. IEP Transition Plan
  3. Agency Support

Here are resources referenced in the video:

  • OSPI Model Forms: Scroll down to find and open the IEP Form with Secondary Transition
  • OSPI Graduation Requirements, including links to download the High School and Beyond Plan in various languages
  • DDA: Developmental Disabilities Administration
  • DVR: Division of Vocational Rehabilitation
  • TVR: Tribal Vocational Rehabilitation, for Native Americans with disabilities
  • DSB: Department of Services for the Blind, for people with blindness or low vision
  • WAC 392-172A-03090, including description of Age of Majority rights that transfer to the student at age 18
  • PAVE article about Supported Decision Making
  • OSPI: The Office of Superintendent of Public Instruction has a family liaison for special education
  • OEO: The Office of the Educational Ombuds provides online resources and 1:1 support
  • OCR: The Office for Civil Rights can help with questions about equity and access
  • ESD: Nine Education Service Districts; each has a behavioral health navigator, and some are licensed to provide behavioral health services
  • Developmental Disabilities Ombuds
  • PAVE School to Adulthood Toolkit

Disability History Month Provides Opportunities for Reflection

Posted on by Nicol Walsh

A Brief Overview

  • Disability History and Awareness Month (RCW 28A.230.158) takes place during October to increase awareness, respect, and acceptance for people with disabilities, and to bring a greater sense of pride to people with disabilities.
  • State law requires public schools to promote educational activities that provide instruction, awareness, and understanding of disability history and people with disabilities.
  • The Office of Superintendent of Public Instruction (OSPI) provides a list of resources and educational opportunities for recognizing and celebrating Disability History and Awareness.
  • The Office of the Educational Ombuds (OEO), in collaboration with Rooted in Rights, created a teaching resource: One Out of Five: Disability History and Pride Project.
  • This article highlights some key laws and legal actions that have impacted school access for students with disabilities in Washington State and nationally. Scroll down for a visual version of our timeline.

Full Article

Disability History and Awareness Month in October provides an opportunity for policy makers, teachers, families and people throughout communities to reflect on the disability rights movement. Equity and access are protected by law, yet there is still work to be done to ensure that laws are upheld and that everyone has fair access to opportunities.

Parent Centers like PAVE participate in making sure that families and individuals understand disability rights and how history has impacted current protections and the language of disability rights. Following is a timeline of key actions at the state and federal level.

Please note that this article is an overview and does not include every law or legal action involved in the long and complicated history of disability rights.

1954​: Brown versus Topeka Board of Education​

  • Separate but Equal was outlawed, and Equal Educational Opportunities became a right of all citizens. ​

1964​: Civil Rights Act​

  • Prohibited state and local governments from denying access to public facilities, establishing equality as a legal right and discrimination as illegal.  
  • Desegregated public schools and authorized the U.S. Attorney General to file lawsuits for suspected violations. ​
  • Established that agencies could lose federal funding for breaking the law.

1971: Washington guarantees special education rights

In 1971, the small but fierce Education for All Committee — Evelyn Chapman, Katie Dolan, Janet Taggart, Cecile Lindquist — worked with two law students to craft and advocate for passage of legislation (House Bill 90) to mandate public education for all children with disabilities age 3–21. HB 90 became Chapter 66 of the Laws of 1971, entitled Educational Opportunities for Handicapped Children, generally referred to as the Education for All Act. Washington’s special education law is now codified at RCW 28A.155. 

1972: Key precedents are established in other states

  1. P.A.R.C. v. Commonwealth of Pennsylvania*
    • Established Free Public Education for all students.
  2. Mills versus Board of Education of DC
    • Established accessible, free and suitable education for all children of school age, regardless of disability or impairment

In Pennsylvania parents led a class action suit that established that all children, regardless of their skill level, have a right to go to school for free. A few months later, a Washington, DC, court ruled that education should be free and accessible and “suitable.” These two cases set up the country to formalize the right of any student with a disability to a Free Appropriate Public Education (FAPE), which is the language of today’s law.

*Note: PAVE recognizes that past terms have led to stigma; using person-first language is our priority. To learn more about how individuals with intellectual disabilities earned education rights through these landmark cases, refer to Disability Justice.

1973: The Rehabilitation Act

The rights of a person with a disability to get the help they need in order to be successful in school and at work–and to access to any public place or program–was firmly established by the federal Rehabilitation Act of 1973, which is still an active law upheld by the Office for Civil Rights. Part of it, Section 504, defines disability as any impairment that significantly impacts a major life activity. When a student in school meets that criteria because of a physical or mental condition, the school is bound by this law to provide what a student needs to access their right to a Free Appropriate Public Education (FAPE).

1975: The Education for All Handicapped Children Act

  • Required public schools to provide equal access to free educational programming
  • Provided for evaluation, a specific educational plan and parent input
  • Declared that special education should emulate as closely as possible the educational experiences of non-disabled students
  • Contained a provision for education in the Least Restrictive Environment (LRE)
  • Provided dispute resolution procedures

The Act was the first federal law that was specific to the education of children with disabilities. The law used the word “emulate” to indicate that students with disabilities had the right to a school experience that would look as much like a typical student’s program as possible. The additional requirement for education in the Least Restrictive Environment (LRE) further motivated schools to work harder to include students of many abilities in general education classrooms. This 1975 law also set up specific guidance for parents to take action if they disagree with the school. Parents are informed about their rights through the Procedural Safeguards that are provided at IEP and other official meetings.

1979: PAVE began as one of the country’s first six parent centers

Pierce County was among six locations across the country to receive training in Special Education rights. Thirty Washington parents got trained about Special Education law in 1979. The goal was for those parents to share information throughout the state. To help this movement, a clearinghouse named Closer Look provided intense training for these pioneering parents about the laws. Closer Look evolved in the National Information Center for Children and Youth with Disabilities (NICHCY), and much of that work has been updated and preserved by the Center for Parent Information and Resources (CPIR), the current technical assistance center for PAVE and other parent centers across the country. CPIR provides free information to professionals and parents through ParentCenterHub.org.

1981: Federal waiver program enables more children to get help at home

The federal government created a system through Medicaid to provide a new way to care for children and adults with disabilities in their homes. The new system provided a financial mechanism called a “waiver” to pay for in-home care. Once the first state Medicaid agency applied for and received a waiver from the federal government, other states began to apply. As a result, thousands of children who in the past might have lived in hospitals or state institutions now live at home. PAVE’s Family to Family Health Information Center is part of a nationwide Family Voices community that helps families understand and apply for these waivers and manage other aspects of care for their loved ones with disabilities and complex medical needs.

1988: Washington State recognizes the capacity of all persons

The Washington legislature passed RCW 71A.10.015 to recognize “the capacity of all persons, including those with developmental disabilities, to be personally and socially productive.

“The legislature further recognizes the state’s obligation to provide aid to persons with developmental disabilities through a uniform, coordinated system of services to enable them to achieve a greater measure of independence and fulfillment and to enjoy all rights and privileges under the Constitution and laws of the United States and the state of Washington.”

1990: Americans with Disabilities Act (ADA)

  • Prohibits disability discrimination by federal and state government, including schools
  • Applies to all schools, workplaces—any space, public or private, that provides goods or services to the public
  • Covers people of all ages, including those who are discriminated against because they are perceived to have a disability, even if they don’t have one

Understood.org provides materials specifically designed for parents to provide basic understanding about ADA protections in schools. Included are printable fact sheets and instructions for filing formal complaints with various public agencies. Many ADA protections mirror those provided through Section 504 of the Rehabilitation Act of 1973. Key concepts in both are equity and access. The ADA and Section 504 protect a person throughout the lifespan. The Office for Civil Rights provides guidance for students with disabilities as they plan for higher education.

1990: Individuals with Disabilities Education Act (IDEA)

  • All children with disabilities get a Free Appropriate Public Education (FAPE)to be ready for further education, jobs and life! 
  • The rights of children with disabilities and their parents are protected. 
  • The law requires schools to assess a child’s program, to make sure it’s working, and the child is benefiting. 

When Congress passed the Individuals with Disabilities Act in 1990, the acronym FAPE (Free Appropriate Public Education) came into being. Now FAPE is key to this entitlement law. Entitlement means that a child with unique needs gets those needs served on an individual basis, not based on a system or program that’s already built and available.

The federal law drives how states design their own special education policies and procedures, which in our state are part of the Washington Administrative Codes (WACs). Title 34, Part 104, is the non-discrimination federal statute under the Office for Civil Rights Department of Education, and in Washington State rules for the provision of special education are in chapter 392-172A of the WAC. 

1992: Rehabilitation Act Amendments

Amendments to the 1973 Act put the abilities and choices of persons with a disability first and challenge the services system and the greater community to support individuals to work, live, and participate in the community. The Amendments are guided by the presumption of ability. A person with a disability, regardless of the severity of the disability, can achieve employment and other rehabilitation goals, if the appropriate services and supports are made available. The primary responsibilities of the vocational rehabilitation system are described:

  • Assist the individual with a disability to make informed choices about potential employment outcomes that result in integration and inclusion in the community.
  • Develop an individualized rehabilitation program with the full participation of the person with a disability.
  • Match the needs and interests reflected in the individualized programs with appropriate services and supports.
  • Proactively foster cooperative working relationships with other agencies and programs, including local education authorities, to unify the service system.
  • Emphasize the quality of services and the accountability that service representatives have to honor the dignity. participation, and growth of persons with disabilities as their employment interests develop over time.

2000: Settlegoode v. Portland Public Schools

  • Appropriate staff training is an important aspect of FAPE.
  • School staff have the right to advocate for children without retaliation.
  • The lawsuit was filed by a former special education PE teacher who was fired after highlighting errors in IEP implementation.

2004: IDEA Amendments

IDEA was amended by the Individuals with Disabilities Education Improvement Act of 2004. Several provisions aligned IDEA with the 2001 No Child Left Behind Act. Here are a few examples of updates:

  • IDEIA authorized 15 states to implement 3-year IEPs on a trial basis when parents continually agree. 
  • Drawing on the report of the President’s Commission on Excellence in Special Education, the law revised the requirements for evaluating children with learning disabilities.
  • More concrete provisions relating to discipline of special education students were added. These are influencing current work to revise disciplinary standards in Washington State.
  • Students are entitled to education in regular classrooms, with needed supplementary aides and services, “to the maximum extent appropriate” under the principle of Least Restrictive Environment (LRE)

2008: Washington schools are required to celebrate disability history each October

In passing a law to establish Disability History and Awareness Month (RCW 28A.230.158), the legislature determined that: “annually recognizing disability history throughout our entire public educational system, from kindergarten through grade twelve and at our colleges and universities, during the month of October will help to increase awareness and understanding of the contributions that people with disabilities in our state, nation, and the world have made to our society. The legislature further finds that recognizing disability history will increase respect and promote acceptance and inclusion of people with disabilities. The legislature further finds that recognizing disability history will inspire students with disabilities to feel a greater sense of pride, reduce harassment and bullying, and help keep students with disabilities in school.”

2012 Employment First in Washington State

The Washington legislature passed Senate Bill 6384 for Employment First requirements for clients 21 and older within the Developmental Disabilities Administration (DDA). In accordance with the new law, “The program should emphasize support for the clients so that they are able to participate in activities that integrate them into their community and support independent living and skills.”

The legislation:

  • Supports employment as the first choice for adults of working age
  • Incorporates the right to transition to a community access program after nine months in an employment service
  • Clarifies that a client receive only one service option at a time (employment or community access).

A DDA Policy Document describes history that led to passage of the legislation and rules for implementation.

2013: Doug C. v Hawaii

  • Parents must be included in the IEP process.
  • The lawsuit was filed in behalf of a parent who was not included in a school meeting at which key IEP decisions were made.

2015: Every Student Succeeds Act (ESSA)

  • Reauthorizes 50-year-old Elementary and Secondary Education Act (ESEA), the nation’s national education law.
  • Provides all children in the United States the right to a free public education “to ensure that every child achieves.”
  • Advances equity by upholding critical protections for America’s disadvantaged and high-need students.
  • Requires—for the first time—that all students in America be taught to high academic standards that will prepare them to succeed in college and careers.
  • Ensures that vital information is provided to educators, families, students, and communities through annual statewide assessments that measure student progress toward high standards.
  • Encourages evidence-based interventions.
  • Sustains and expands access to high-quality preschool.
  • Maintains accountability in low-performing schools, where groups of students are not making progress and where graduation rates are low.

2017: Endrew F versus Douglas County School District

  • The Supreme Court issued a unanimous decision that under the IDEA a school must offer an IEP reasonably calculated to enable a child to make progress, in light of the child’s circumstances of disability.
  • The “de minimis standard” is overruled; trivial progress isn’t enough.
  • Grade-level standards are prioritized.
  • Parent participation is emphasized

The Endrew F case is still being discussed by a variety of agencies, and many professionals from groups that oversee educational process are calling on parents to hold schools accountable to these new standards. Writing for the court, Chief Justice John G. Roberts said that trivial progress would no longer meet the standard of FAPE and that the IDEA aims for grade level advancement for children with disabilities who can be educated in the regular classroom. A child making trivial progress, he said, would be tantamount to “sitting idly … awaiting the time when they were old enough to drop out.”

The above information is shown below as an infographic. You can click on the image and access the PDF of the same:

Infographic of the Disability Rights Timeline. Visit wapave.org and type disability History on the search bar to read the article and receive accessible information included in this infographic

View this infographic in PDF form

Sample Letter to Request an IEP Meeting

Posted on by Nicol Walsh

When a student has an Individualized Education Program (IEP), their IEP team is required to meet and review the program at least every year. The annual review date is listed on the cover page of the IEP document. Family caregivers can request additional meetings, and this article includes a sample letter families can use to formally request an IEP meeting.

Keep in mind that parents have the right to participate in meetings where decisions are made about eligibility or changes to a student’s special education services. A court decision in 2013 further affirmed those rights. More information about that case, Doug C. Versus Hawaii, is included in an article from PAVE: Parent Participation in Special Education Process is a Priority Under Federal Law.

An IEP meeting request letter can be submitted to school staff and to district staff. Family participants have the right to invite guests to the meeting for support and to provide additional expertise about the student.

Best practice is for the school and parents to communicate about who will attend the meeting. If required school staff are unable to attend a meeting, parents must sign consent for their absence. Under state law (WAC 392-172A-03095), a school district must ensure that each IEP team includes:

  • Parent/legal guardian
  • At least one general education teacher
  • At least one special education teacher of the student
  • District staff qualified in the provision of specially designed instruction (SDI), knowledgeable about the district’s general education curriculum, and knowledgeable about the district’s available resources
  • Someone (usually a school psychologist) qualified to interpret the instructional implications of evaluation results
  • At the discretion of the parent or the school district, other individuals who have knowledge or special expertise regarding the student, including related services personnel
  • Whenever appropriate, the student (required to be invited once a transition plan is added, by age 16 or earlier)

The school’s meeting invitation lists attendees and can clarify when the meeting will start and end and the purpose or agenda for the meeting. PAVE provides an article about how families can prepare for a meeting by creating a handout for the team.

Note that in the above list, in accordance with state laws, the IEP team includes an individual who is knowledgeable about district resources. Sometimes a school principal or other staff member fulfills that role. Families or school staff can request attendance by someone who works in the district’s special education department. If the family is asking for something that might cost additional money or require a change in placement to another location inside or outside the district, it can be critical to have a district special education representative involved in decision-making.

TIP: If a school administrator in a meeting indicates that “we’ll have to check with district and get back with you on that,” the IEP team is probably incomplete. Parents can request another meeting with all required attendees.

Parents can request to meet with the IEP team any time of year if they have questions or concerns. Here are a few examples of reasons parents might request an IEP meeting:

  • New diagnosis or information about a student’s disability
  • Frequent disciplinary actions
  • Student is refusing to go to school
  • Academic struggles
  • Lack of meaningful progress toward IEP goals (PAVE provides an article with a handout about SMART goals and progress monitoring) 
  • Behavior plan isn’t working
  • Placement isn’t working
  • Parent wants to discuss further evaluation by the school or an independent agency

Below is a sample letter families can use when writing a request for an IEP meeting. If sending through email, the format can be adjusted to exclude street addresses:

Your Name
Street Address
City, State, Zip
Date

Name (if known, otherwise use title only)
Title/Director of Special Education/Program Coordinator
School District
Street Address
City, State, Zip

Dear Name (if known, otherwise use title only):

I am requesting an IEP meeting regarding the program for my student, NAME, (BD: 00-00-0000). I have some concerns that I believe need to be addressed by the entire team. I understand that I will be involved in scheduling so I can participate fully as an equal member of the IEP team and that I will be notified in writing when a meeting is arranged.

My hope is that this meeting will provide an opportunity for collaborative problem solving. I want to make sure (NAME’s) IEP provides enough support for improvement and learning within their capabilities. I look forward to discussing my specific concerns about: (add specific concerns here).

  • Use bullet points if the list becomes long.
  • Use bullet points if the list becomes long.
  • Use bullet points if the list becomes long.

I have attached documentation from (list any outside providers who provided letters or reports and highlight any specific recommendations from those attached documents).

I would like a copy of the most recent IEP (or amended Draft IEP) with enough time to review it so I can prepare for our team meeting.

I’m also requesting copies of (any other documents you wish to review before the meeting: evaluation reports, teacher progress notes, state curricula…).

I appreciate your help in behalf of my student. If you have any questions please call me at (telephone number) or email me at (email address, optional).

Sincerely,

Your Name

CC: (Names and titles of anyone else you give copies to)

You can email this letter or send it by certified mail (keep your receipt), or hand carry it to the district office and get a date/time receipt. Remember to keep a copy of this letter and all school-related correspondence for your records. Get organized with a binder or a filing system that will help you keep track of all letters, meetings, conversations, etc. These documents will be important for you and your child for many years to come, including when your child transitions out of school.

Please Note: It is the policy of PAVE to provide support, information, and training for families, professionals, and interested others on a number of topics. In no way do these activities constitute providing legal advice. PAVE is not a legal firm or a legal services agency. This message and accompanying documents are covered by the Electronic Communications Privacy Act, 18 U.S.C. §§ 2510-2521, and contain information intended for the specified individual(s) only. 

The contents of this document were developed under a grant from the US Department of Education. The contents do not necessarily represent the policy of the US Department of Education and you should not assume endorsement by the Federal Government.

Back To School Checklist!

Posted on by Nicol Walsh

Late summer is the time to gather school supplies, find out what time the school bus will pick up and drop off, and prepare to find new classrooms and meet new teachers. Parents of students with disabilities have some additional things to check off the list to be ready for the year ahead.

Super important: Before school starts, make sure you know what’s included in your child’s Individualized Education Program (IEP), Section 504 Plan, and/or Behavior Intervention Plan (BIP). For a more detailed article about getting ready for a new school year, see PAVE’s article: Tips to Help Parents Plan for the Upcoming School Year.

Here’s a checklist to help you get organized:

  • Create a one-pager about your child to share with school staff
    • Include a picture
    • List child’s talents and strengths—your bragging points
    • Describe behavioral strategies that motivate your child
    • Mention any needs related to allergy, diet, or sensory
    • Highlight important accommodations, interventions, and supports from the 504 Plan, IEP, or BIP
  • Make a list of questions for your next meeting to discuss the IEP, BIP, or 504 Plan
    • Do you understand the goals and what skills your child is working on?
    • Do the present levels of performance match your child’s current development?
    • Do accommodations and modifications sound likely to work?
    • Do you understand the target and replacement behaviors being tracked and taught by a Behavior Intervention Plan (BIP)?
    • Will the child’s transportation needs be met?
  • Mark your calendar for about a week before school starts to visit school and/or send an email to teachers, the IEP case manager, and/or your child’s counselor
    • Share the one-pager you built!
    • Ask school staff how they prefer to communicate—email, phone, a notebook sent back and forth between home and school?
    • Get clear about what you want and need, and collaborate to arrange a communication plan that will work for everyone
    • A communication plan between home and school can be listed as an accommodation on an IEP or 504 Plan; plan to ask for your communication plan to be written into the document at the next formal meeting
  • Design a communication log book
    • Can be a physical or digital notebook
    • Plan to write notes every time you speak with someone about your child’s needs or services. Include the date, the person’s full name and title, and information about the discussion
    • Log every communication, whether it happens in the hallway, on the phone, through text, via email, or something else
    • After every communication, plan to send an email thanking the person for their input and reviewing what was discussed and any promised actions—now that conversation is “in writing”
    • Print emails to include in your physical log book or copy/paste to include in a digital file
    • Having everything in writing will help you confirm what did/didn’t happen as promised: “If it’s not written down, it didn’t happen.”
  • Consider if you want to request more information about the credentials of teachers or providers working with your child. Here are some things you can ask about:
    • Who is providing which services and supports?
    • Who is designing the specially designed instruction (SDI)? (SDI helps a child make progress toward IEP goals)
    • What training did these staff receive, or are there training needs for the district to consider?
  • Ask  the special education teacher or 504 case manager how you can share information about your child, such as a one-pager, with school team members. This includes paraprofessionals or aids and other members of the school team.
    • Parents have important information that benefit all school team members. Ask who has access to your child’s IEP or 504 Plan and how you can support ensuring team members receive information
  • Have thank you notes ready to write and share!
    • Keep in mind that showing someone you appreciate their efforts can reinforce good work
  • Celebrate your child’s return to school
    • Do the bus dance on the first morning back to school!
    • Be ready to welcome your child home with love and encouragement. You can ask questions and/or read notes from your child’s teachers that help your loved one reflect on their day and share about the new friends and helpers they met at school

Below is an infographic of the above information.

Tip! you can click on the image and access an accessible PDF to print and keep handy.

Back to School Checklist click to find the accessible PDF

Click to access an accessible PDF of the infographic above

Self-Care is Critical for Caregivers with Unique Challenges

Posted on by Nicol Walsh
  • Self-care is not selfish. Self-care is any activity or strategy that helps you survive and thrive in your life. Without regular self-care, it can become impossible to keep up with work, support and care for others, and manage daily activities.
  • PAVE knows that self-care can be particularly challenging for family members caring for someone with a disability or complex medical condition. This article includes tips and guidance especially for you.
  • For a quick takeaway, here is a short video to inspire self-care today: Self Care for Caregivers.
  • PAVE provides a library with more strategies to cultivate resilience, create calm through organization, improve sleep, and more: Self-Care Videos for Families Series.

Full Article

Raising children requires patience, creativity, problem-solving skills and infinite energy. Think about that last word—energy. A car doesn’t keep going if it runs out of gas, right? The same is true for parents and other caregivers. If we don’t refill our tanks regularly we cannot keep going. We humans refuel with self-care, which is a broad term to describe any activity or strategy that gives us a boost.

Self-care is not selfish! Without ways to refresh, we cannot maintain our jobs, manage our homes, or take care of people who need us to keep showing up. Because the demands of caring for someone with a disability or complex medical condition can require even more energy, refueling through self-care is especially critical for caregivers. This article is for you!

Before you read anymore, try this simple self-care tool called Two Feet, One Breath. Doctors use this one in between seeing patients:

  • Notice your two feet on the ground. Feel the ground and feel your feet under you, with the weight of your body dropping into the ground through your feet. If you don’t stand on two feet, then notice whatever part of your body is connecting you to furniture or the floor.
  • Notice that you are breathing in and imagine that breath starts in your feet (or seated body) and travels all the way to the top of your head.
  • Notice that you are breathing out and imagine that your outbreath goes all the way down and out through your feet (or seated body).

Two Feet, One Breath can become part of every transition in your day: when you get out of bed or the car, before you start a task, after you finish something, or any time you go into a different space or prepare to talk with someone. This simple practice highlights how self-care can become integrated into your day.

Keep in mind: Although a day at the spa might be an excellent idea, self-care doesn’t have to be fancy or expensive to have a big impact!

These practices matter a lot, especially because almost everyone knows or cares for someone with special needs. According to the Centers for Disease Control (CDC), at least 26 percent of the population experiences a disability. The result is widespread compassion fatigue, which is a way to talk about burnout from giving more than you get.

Anyone who isn’t convinced that self-care matters may want to watch a film by National Geographic, Stress, Portrait of a Killer, which includes research data to show how caring for a child with special needs can impact parents (minute 38 includes that report).

Below are some ways to pull on your own oxygen mask first!

Connect with others

Meet up regularly with people who have similar life stressors. The Parent-to-Parent network can help by matching parents with similar interests or by providing regular events and group meetings.

Caregivers of youth who are Deaf or Hard of Hearing (DHH) can connect with other family caregivers at Washington Hands and Voices. 

For caregivers of young people with behavioral health conditions, there are several family-serving agencies that might provide help and solidarity. Some agencies are listed at the end of this article and in PAVE’s Behavioral Health Toolkit.

Here are additional places to find one another:

  • School
  • Sports teams
  • Community center
  • Special Needs Parent Teacher Association
  • Extracurricular events
  • Online support groups

Get Enough Sleep

The body uses sleep to recover, heal, and process stress. If anxiety or intrusive thinking consistently interrupts sleep, self-care starts with some sleeping preparations:

Move the Body

Moving releases feel-good chemicals into the body, improves mood, and reduces the body’s stress response. Walk or hike, practice yoga, swim, wrestle with the kids, chop wood, work in the yard, or start a spontaneous living-room dance party.

Here is information from the Mayo Clinic about exercise:

  • It pumps up endorphins. Physical activity may help bump up the production of your brain’s feel-good neurotransmitters, called endorphins. Although this function is often referred to as a runner’s high, any aerobic activity, such as a rousing game of tennis or a nature hike, can contribute to this same feeling.
  • It reduces negative effects of stress. Exercise can provide stress relief for your body while imitating effects of stress, such as the flight or fight response, and helping your body and its systems practice working together through those effects. This can also lead to positive effects in your body—including your cardiovascular, digestive and immune systems—by helping protect your body from harmful effects of stress.
  • It’s meditation in motion. After a fast-paced game of racquetball, a long walk or run, or several laps in the pool, you may often find that you’ve forgotten the day’s irritations and concentrated only on your body’s movements.
  • It improves your mood. Regular exercise can increase self-confidence, improve your mood, help you relax, and lower symptoms of mild depression and anxiety. Exercise can also improve your sleep, which is often disrupted by stress, depression and anxiety. All of these exercise benefits can ease your stress levels and give you a sense of command over your body and your life.

Be Mindful

Mindfulness can be as simple as the Two Feet, One Breath practice described at the top of this article. Mindfulness means paying attention or putting your full attention into something.

Focusing the mind can be fun and simple and doesn’t have to be quiet. Here are a few ways to practice that don’t involve a yoga mat or a meditation cushion:

  • Color
  • Work on/wash the car
  • Build something
  • Make art or do a craft project
  • Put together a puzzle
  • Laugh
  • Clean
  • More ideas: Mindful.org

Schedule Time

A day can disappear into unscheduled chaos without some intentional planning. A carefully organized calendar, with realistic boundaries, can help make sure there’s breathing room.

Set personal appointments on the calendar for fun, dates with kids, healthcare routines, and personal “me time.” If the calendar is full, be courageous about saying no and setting boundaries. If someone needs your help, find a day and time where you might be able to say yes without compromising your self-care. Remember that self-care is how you refuel; schedule it so you won’t run out of gas!

One of PAVE’s self-care videos for families is this one: Get Calm by Getting Organized.

Here’s more guidance: calendar.com: Why Stress Management and Time Management go Hand in Hand.

Seek Help

Respite care provides temporary relief for a primary caregiver. In Washington State, a resource to find respite providers is Lifespan Respite. PAVE provides an article with more information:  Respite Offers a Break for Caregivers and Those They Support.

Parents of children with developmental disabilities can seek in-home personal care services and request a waiver for respite care from the Developmental Disabilities Administration (DDA). Here are resources to help with that process:

For parents whose children and youth experience conditions related to behavioral health, PAVE provides a toolkit with resources for navigating crisis systems, medical care, school, and family support networks. Here are some family serving agencies:

Parents of youth who are blind or low vision may seek support from the Washington State Department of Services for the Blind (DSB). Learn from youth at PAVE: My story: The Benefits of Working with Agencies like the Washington State Department of Services for the Blind.

Parents of youth who are Deaf or Hard of Hearing (DHH) can connect with the  Office of the Deaf and Hard of Hearing | DSHS or connect with other family caregivers at Washington Hands and Voices.

Friendships & Taking Care of Yourself: PURPAS

Posted on by Nicol Walsh

Great takeaways:

  • Meet new people, have fun, and talk about what you like to do!
  • Find a good new friend, learn to take the bus, manage your money, and learn how to be more presentable.
  • The gym helped me get more in shape and gave me my first job!

“I just wanted to better myself.  To be like a superhero.  And after doing my resume and sending it to the online site << boom >> I got a job!  And joining PURPAS I got new friends and learn how to take of myself.” – Randy

We envision an inclusive community that values the unique abilities, cultures, voices, contributions, and potential of all individuals.  Please join us in sharing Randy’s Recipe for Empowerment!

And if you, or those you know, can make a year-end donation, of any amount, thank you!

Make a donation today

Navigating Life After Early Intervention Services

Posted on by Nicol Walsh

Great takeaways:

  • Get on waitlists and get engaged in community programs!
  • Connect with other parents
  • Grace for yourself & find what works for you!

“Our children are children.  Sometimes they are not ready, and we’re not ready to handle this now.  For example, cold and flu season can be hard to start or add more therapies.  We learned from our wrong turns.”  – Andrea

We hope you found hope, inspiration, and ideas for you, your child, or others you may know. And if you know We hope you found hope, inspiration, and ideas for you, your child, or others you may know.  And if you know of anyone able to donate…any amount – $5, $10, $50.  All donations will help PAVE provide support, training, information, and resources to empower and give voice to individuals, youth and families impacted by disabilities.   Please pass on Arianna & Andrea’s Recipe for Empowerment!

Make a donation today

Make Good Feelings Stick Like Velcro

Posted on by Nicol Walsh

This video provides a mindfulness practice to make good feelings stick like Velcro. When the mind focuses on what’s going well, stress can slide off like Teflon. We’re sort of hard-wired to do the opposite. Click to understand why and learn a trick to hack your nervous system to spend more time thinking about good stuff and feeling mentally well.

FAPE Fits Like a Proper Outfit

Posted on by Nicol Walsh

Have you ever felt like your student’s Individualized Education Program—their IEP—just isn’t a good fit? This short video provides an analogy to help families and schools talk about improvements.

Here are the words that go with the video:

Imagine if the school was responsible to provide a suit of clothes for your student. The clothes must fit in size and style. Let’s pretend your child is eligible for this specially tailored suit because clothes off the rack fit so poorly that the child won’t leave home. This problem is impacting everything.

This is sort of like the school’s responsibility to provide a child who has an IEP with FAPE. FAPE stands for Free Appropriate Public Education. The services delivered through an IEP make education appropriate because they are tailored to fit the child based on their strengths and needs. FAPE is what makes school accessible for a student with a disability.

Let’s go back to pretending that the school must provide a well-fitting suit. Imagine that the school opens a closet and says, “Let’s see what we have in here.” What they pull out might be too big, too small, outrageously mismatched or in colors and patterns that make your child grimace and refuse to get dressed. They might find bits and pieces that work, but chances are high that they won’t be able to put together a whole outfit without trying a little harder and getting out the sewing machine.

That’s like the work of an IEP team—to pull out the tools everyone needs to creatively build a program that is a good fit for the student.

The school is responsible under federal law to provide eligible students with FAPE. Tailoring a program to meet individualized needs in light of the child’s circumstances is part of FAPE. If you think your school is digging around in a closet trying to find a program for your student that is ready made, you can remind them that an IEP is individually tailored to fit the student.

Our Parent Training and Information team at PAVE hopes your IEP team designs a program that outfits your child for a successful journey through education. If you’d like our support, click Get Help from PAVE’s website, wapave.org.

Feel What You Feel

Posted on by Nicol Walsh

When emotions overwhelm us, we sometimes react in ways that we later regret. “Name it to Tame it” is a concept from neuroscientist Dan Siegel. It means that if we identify our emotions and work with them, instead of pushing them away, we are better equipped for self-control. This simple body sensing meditation creates a way to practice emotional self-awareness and build mental muscles for emotional regulation.

For more videos about mindfulness, please go to wapave.org Thanks for watching!

Parent to Parent (P2P) Connects Caregivers Statewide for Support

Posted on by Nicol Walsh

A Brief Overview

Full Article

Family caregivers for children with disabilities and special healthcare needs may feel isolated or uncertain about where to seek help for their children and themselves. A place for support is Parent to Parent (P2P), a network that connects families to trained parent volunteers who have experienced a similar journey with their own children. In addition to resources and information, parents share personal support and encouragement.

Families new to the disability world can find preliminary information and request help right away by filling out a short form on a website page designed just for them, hosted by The Arc of Washington: Getting Started/Contact Us…Welcome to our World.

The first P2P program started in Nebraska in 1971. Programs started in Washington State in 1980. A national P2P network was established in 2003 to provide technical support to the statewide networks, with a goal to reach all 50 states. P2P USA provides an historical timeline.

Washington has a network of P2P programs that serve every corner of the state. The Arc provides support to the regional programs and links them to national P2P resources. Families can go to arcwa.org to find a list of P2P coordinators, organized by region and listed under the counties served.

¿Hablas español? Para más información y hacer referidos, llama a su condado abajo: Coordinadores de Enlance Hispano.

Families can request a parent match 

When reaching out to the local P2P network, families can request a “parent match.” P2P leaders will locate a helping parent volunteer who has a similar lived experience and help the families get connected. From there, a supportive relationship can develop, where empathy, hope, and strength are shared.

Helping Parents cannot provide all answers, but they share insight, solidarity, and role modeling. They also share the joy and pride they’ve experienced while watching their child grow and achieve. A phrase commonly shared is: “I know, and I understand.”

In keeping with evidence-based practices promoted by national and state P2P organizations, the helping parent volunteers are training following a specific process and all personal information is kept confidential.

P2P services are free and include:

  • Emotional support for family caregivers of children with special needs
  • Referrals for community resources
  • Information sharing about disabilities and medical conditions
  • Family matching with trained helping parents
  • Social and recreational events
  • Training for parents who would like to become helping parent volunteers
  • Disability awareness and community outreach

Someone to listen and understand

Washington’s statewide P2P is funded by The Arc of Washington State, the Developmental Disabilities Administration (DDA), and the Department of Health/Children with Special Health Care Needs. Individual county programs receive funding from host agencies, county DDA offices, the United Way, local grants, private donations, and more.

The Council for Exceptional Children published a research paper about P2P in 1999. Respondents to a national survey reported the following benefits from participating in P2P:

  • Someone to listen and understand (66 percent)
  • Disability information (63 percent)
  • Care for my child (58 percent
  • Ways to find services (54 percent)

Statewide, various agencies and family-led organizations host local P2P programs. An interactive map of Washington State provides an easy way to locate information in English and Spanish about a P2P program in your area.

Another way to begin is to contact the statewide P2P coordinator, Tracie Hoppis, by sending an email to: parent2parentwa@arcwa.org.

Autism Spectrum Disorder: Information and Resources for Families

Posted on by Nicol Walsh

A Brief Overview

  • A short YouTube video by Osmosis.org provides an overview of Autism Spectrum Disorder (ASD).
  • A medical diagnosis of autism is not required for school-based evaluations or interventions. Read on for more information.
  • Families concerned about a child’s development can call the state’s Family Health Hotline at 1-800-322-2588. This toll-free number offers help in English, Spanish and other languages.
  • To encourage early screening for ASD, the Centers for Disease Control and Prevention (CDC) provides a 2-page tracking chart of developmental markers for children Birth-4.
  • The University of Washington Autism Center provides a collection of resources in categories that include online tools, early recognition, service organizations, and neurodiversity.
  • Information about early screening recommendations and state-specific guidance is available from the Washington Department of Health (DOH).
  • Help navigating medical systems is available from PAVE’s Family to Family Health Information Center. Fill out a Helpline Request for direct support or visit the Family Voices of Washington website for further information and resources.

Full Article

Parents of children with autism have many different experiences when watching for their baby’s first smile, their toddler’s first steps, emerging language, or their child’s learning in playtime or academic areas. When developmental milestones aren’t met in typical timeframes, families may seek a diagnosis, medical interventions, and/or supports from school.

April is Autism Acceptance Month, providing an opportunity to consider challenges and celebrations for individuals who experience neurodiversity, which is a word used to capture a range of differences in the ways that humans function and experience the world.

Self-advocates in the Autistic community celebrate diversity

Much of the Autistic community rallies to honor neurodiversity, uplift the voices of self-advocates, and forward the movement of civil and social rights. “Nothing About Us Without Us” is part of the disability rights movement supported by The Autistic Self Advocacy Network (ASAN), which shares resources by autistic individuals with lived experience for people who have autism spectrum disorders. ASAN created an e-book, And Straight on Till Morning: Essays on Autism Acceptance, as part of Autism Acceptance Month 2013. The agency also provides a welcome kit for newly diagnosed individuals: Welcome to the Autistic Community!

What is Autism Spectrum Disorder (ASD)?

Autism is referred to as a “spectrum” disorder, which means that signs and symptoms vary among individuals. The Centers for Disease Control and Prevention (CDC) defines Autism Spectrum Disorder (ASD) as “a developmental disability that can cause significant social, communication and behavioral challenges.

“There is often nothing about how people with ASD look that sets them apart from other people, but people with ASD may communicate, interact, behave, and learn in ways that are different from most other people. The learning, thinking, and problem-solving abilities of people with ASD can range from gifted to severely challenged. Some people with ASD need a lot of help in their daily lives; others need less.”

A diagnosis of ASD includes several conditions that were formerly diagnosed separately. Examples include autistic disorder, pervasive developmental disorder not otherwise specified (PDD-NOS), and Asperger syndrome. A short YouTube video by Osmosis.org provides an overview of ASD.

Signs and Symptoms

People with ASD may have problems with social, emotional, and communication skills. They might repeat certain behaviors or have rigid ideas about routines. Signs of ASD begin during early childhood and typically last throughout life. The CDC recommends that families seek early intervention if there are concerns about how a child plays, learns, speaks, acts, and moves.

Here are a few examples of some ASD symptoms:

  • Not pointing at objects, such as an airplane flying overhead, or looking when someone else points
  • Avoiding eye contact
  • Trouble understanding or expressing feelings
  • Not wanting to be held or cuddled
  • Repeating or echoing words, phrases, or actions
  • Not playing “pretend”
  • Unusual reactions to the way things smell, taste, look, feel, or sound

Diagnosing ASD can be difficult since there is no specific medical test. Doctors look at the person’s behavior and development to make a diagnosis. The CDC says a diagnosis from a credible professional by age 2 is considered very reliable.

How to seek a diagnosis

Medical diagnoses in Washington are provided by Autism Centers of Excellence (COEs). Many of these centers provide access to Applied Behavioral Analysis (ABA) therapy, an intervention that is helpful for some individuals with ASD.

An Autism COE may be a health care provider, medical practice, psychology practice, or multidisciplinary assessment team that has completed a certification training authorized by the state’s Health Care Authority (HCA). Physicians, nurse practitioners, and pediatric primary care naturopaths are eligible to apply for COE training and endorsement. The Developmental Disabilities Administration (DDA) accepts diagnoses from COEs as a component of DDA services eligibility, with the exception of naturopathic providers.

The American Academy of Pediatrics recommends that all children have a developmental screening at every well-child check-up, with an autism screening at 18 months of age and again between ages 2 and 3. To encourage early screening and intervention, the CDC provides a two-page tracking chart of developmental markers for children Birth-4.  Further information about these recommendations is available from the Washington Department of Health (DOH).

CDC numbers show that 1 in 88 children have ASD. According to Washington’s DOH, about 10,000 of the state’s children have ASD. An Autism Task Force has been at work since 2005 to promote early screening and intervention. In collaboration with DOH and other agencies, the task force in July 2016 published the downloadable Autism Guidebook for Washington State.

The guidebook includes information for families, care providers, educators, medical professionals, and others. It includes an extensive Autism Lifespan Resource Directory. Diagnostic criteria and special education eligibility criteria are described, as are specifically recommended interventions.

Getting help at school

Autism is an eligibility category for a student to receive school-based services through an Individualized Education Program (IEP). The categories are defined by the federal Individuals with Disabilities Education Act (IDEA). State law further defines the categories and criteria for intervention.

The Washington Administrative Code that describes IEP eligibility (WAC 392-172A-01035) describes autism as “a developmental disability significantly affecting verbal and nonverbal communication and social interaction, generally evident before age three, that adversely affects a student’s educational performance. Other characteristics often associated with autism are engagement in repetitive activities and stereotyped movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experiences.”

Regardless of whether a student is medically diagnosed with ASD, a school district has the affirmative duty to seek out, evaluate and serve—if eligible—any child within its boundaries who has a known or suspected disability condition that may significantly impact access to learning (Child Find Mandate). Child Find applies to IDEA’s Part B IEP services for children ages 3-21 and to IDEA’s Part C early intervention services for children Birth-3.

Families concerned about a child’s development can call the state’s Family Health Hotline at 1-800-322-2588. This toll-free number offers help in English, Spanish and other languages.

Schools have specific evaluation tools to determine how the features of an autistic disorder might impact school. Evaluations can also determine eligibility based on health impairments (for example, ADHD), speech delays, learning disabilities, or emotional behavioral conditions that might co-occur with autism. See PAVE’s article about evaluation process for more information, including a list of all IDEA eligibility categories.

In short, a student is eligible for an Individualized Education Program (IEP) if the evaluation determines:

  1. The student has a disability
  2. The disability significantly impacts access to education
  3. The student requires Specially Designed Instruction (SDI) and/or Related Services

Not every student with ASD is eligible for school-based services through an IEP. Some may have “major life activity” impacts to qualify for a Section 504 Plan, which can accommodate a student within general education.

Section 504 provides anti-discrimination protections as part of the Rehabilitation Act of 1973. Keep in mind that students with IEPs have disability-related protections from IDEA and Section 504. Additional protections are part of the Americans with Disabilities Act (ADA). See PAVE’s article about disability history for additional information.

Resources related to ASD

Resources for families, teachers, and medical providers supporting individuals with autism are vast. The University of Washington Autism Center provides a manageable place to begin with a small collection of resource categories that include online tools, early recognition, organization, and neurodiversity. Within its online tools, UW maintains lists of organizations that provide advocacy, assessments, intervention services, and research/training.

Families whose children experience autism may need services beyond school. Speech, Occupational Therapy, Applied Behavioral Analysis (ABA) therapies, and other services may be available through insurance if they are determined to be medically necessary.

PAVE’s Family-to-Family Health Information Center (Family Voices of WA) provides support to families navigating various healthcare systems related to disability. Fill out a Helpline Request for direct support or visit the Family Voices of Washington website for further information and resources.

The state Health Care Authority provides information about ABA resources and how to seek approval from public insurance (Apple Health) for specific therapies. HCA also hosts a list of Contracted ABA providers in Washington State. 

Another place to seek help with questions related to medical and/or insurance services is the Washington Autism Alliance (WAA). WAA provides free support for families navigating insurance and medical systems and can help with DDA applications. WAA’s website requests families to join the agency by providing basic information before they navigate to request an intake. Note that while basic services are free from WAA, the agency may charge a fee based on a sliding scale if families request legal services from an attorney.

WAA is sponsoring a virtual Day Out for Autism April 24, 2021, with family-friendly Facebook Live events starting at 10 am.