Tag: disability

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.

PAVE has a sample template to help you keep track of who is who on the IEP Team

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.

Stay Stubborn! One Girl’s Self-Determination while Navigating Healthcare

Posted on by Nicol Walsh

By Kyann Flint

Being stubborn is the right approach when it means self-determination. Having the drive to learn what you want and need and then speak up for yourself gives you control over your life. 

I learned that lesson young. By age 6, I was advocating in my own healthcare. My doctor wanted to stick a swab up my nose and down my throat at the same time. I told him, “No!” and asked, “What would that accomplish?” I was not sick. Why put me through that? I had been through enough tests. If this one was not going to improve my pain or give me a diagnosis, then it did not need to happen. Because I spoke up, it didn’t!

My parents supported my growing self-advocacy and also advocated for me. As my voice blossomed, so did my skills for self-determination. The self-determination skills I worked on throughout childhood have helped me gain independence and make some of the most important adult decisions of my life.

When I was 8, I was diagnosed with a type of genetic peripheral neuropathy called Charcot Marie Tooth (CMT). The coating around my nerves becomes scarred and cannot be repaired, making it hard for my brain to tell my legs, arms, feet, and hands what to do.

I continued to have symptoms that did not quite fit this diagnosis, so testing continued. By age 12, I started asking whether further diagnoses would improve my quality of life. The answer was no, so I chose to end the poking and prodding and deal with my symptoms as they came.

Right after I turned 21, I was in tremendous pain and needed more help. Three years later, I had a second diagnosis: Heredity Spastic Paraplegia. Four years after that, the cause of my pain was finally found. My bladder was failing, which made it difficult to go to the bathroom. I eventually lost the ability to go to the bathroom on my own. On September 30, 2020, I made one of the best decisions of my life and had the Mitrofanoff surgery that now allows me to go to the bathroom independently.

I needed a lot of self-determination to get to this point. Before the surgery, one doctor advised against it, explaining that I wasn’t a good candidate due to my progressive neuromuscular disorders. She predicted that I would be incapacitated one day, so “why bother?” I decided that even if she were right, I wanted the independence that the surgery could provide now. I found a new surgeon. I am so thankful that I did!

My surgeon related well with me and supported my belief that I was “worthy” of this procedure. He agreed that it was a good choice to enable me to live more independently right now. The choice to proceed wasn’t easy or pain-free. I needed many tests and procedures, including a colonoscopy without anesthesia. Delays in scheduling the surgery tested my self-determination, but I persevered.

My surgery included a week in the hospital and months of recovery, but my stubborn nature helped me get through it all, despite the frustration of having limited manual dexterity and being legally blind. But I figured out how to go to the bathroom independently!

It took a lot of self-determination to move forward with one of the best decisions of my life, but I am proud that I made this decision. If you have a decision to make in your life, I hope you will tap into your own stubborn self-determination. Figure out what you need and want and speak up for yourself. I’m so glad I did.

About the author: Kyann Flint, Director of Accessibility for Wandke Consulting, is a passionate advocate for the disability community. As a person with a disability, she strives to educate society on how social barriers, like ignorance and stereotypes, limit the disability community. Kyann loves coffee and traveling.

COVID-19 and Disability: Access to Work has Changed

Posted on by Nicol Walsh

By Kyann Flint

The world of work is generally not built for the disability community. Federal laws guarantee the right to work and the right to accommodations, but modern-day jobs do not always give each person an opportunity to succeed. Many workers with disabilities must try harder to make the job fit, and some employers see accommodations as extra expenses or special rather than an investment for equal opportunity.

I have experienced this firsthand. My first employer told me that because of my legal blindness, he did not know what he would have me do. No empathy. No innovation. No Universal Design.

Universal Design is a plan for buildings, products, or environments that are accessible to all people, regardless of age, disability, or other factors. Universal Design accommodates everyone, reducing the need for anyone to need or request accommodations. My own opportunity to build a career was boosted by having a boss who is also disabled at an agency that incorporates Universal Design into our everyday work.

COVID-19 has reshaped many jobs and created opportunities for employers to see how Universal Design can benefit everyone. For example, the disability community has long advocated for work-from-home. Until organizations were driven by the need to keep everyone safe, the request for this accommodation did not seem like a good choice for many employers. Many now see the benefit of a work-from-home option.  

Because I cannot drive, working from home benefited me before the home office became common during COVID-19. My colleagues and I were already comfortable with Zoom and knew how to help our community adapt to using that online meeting platform and other tools to support the need for almost everyone to work from home.

Clearly, working from home is not just a disability accommodation but also provides access to jobs for more people. This change represents a benefit of Universal Design.

Curb cuts are another example of Universal Design. Curb cuts are built with wheelchair accessibility in mind, but they benefit everyone, making it easier for parents with strollers, people with leg injuries and anyone who might trip or fall because of a misstep over a curb. Ramps, elevators, and accessible websites are other examples of innovations that support everyone.

Better access for everyone means fewer people need to ask for accommodations. People with disabilities feel included. In a world built with Universal Design, disability is not a problem. When society gives people with disabilities access to work, we are all better off.

A lesson learned during COVID-19 is that accessibility is an investment, not an expense. Universal Design an everyday thing that creates equity and inclusion for all.

About the author: Kyann Flint, Director of Accessibility for Wandke Consulting, is a passionate advocate for the disability community. As a person with a disability, she strives to educate society on how social barriers, like ignorance and stereotypes, limit the disability community. Kyann loves coffee and travel.