Tag: disability

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.

Sample Letter to Request an IEP Meeting

Posted on by Nicol Walsh

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

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. The school’s meeting invitation will list 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.

In accordance with the IDEA and 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.

The requirement for an annual IEP review is part of the Individuals with Disabilities Education Act (IDEA), the federal law that entitles students with qualifying disabilities to special education services. PAVE has an article that describes key principles of the IDEA. One priority of the IDEA is parent participation, and schools are responsible to invite parents to meetings at which a student’s special education program or placement is discussed. The Washington Administrative Code (WAC 392-172A-03100) provides detail about the requirements for parent participation in IEP process. When a student is 16 and/or postsecondary goals are being discussed, schools are required to invite students to their IEP meetings.

The IDEA requires schools to evaluate special education students every three years to determine whether they continue to qualify for services and whether the IEP needs to be adjusted. PAVE provides an article about evaluation process. Family participants or school staff can request a re-evaluation sooner if there are concerns. PAVE provides an article with a Sample Letter to Request Evaluation.

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
  • academic struggles
  • lack of meaningful progress toward IEP goals
  • behavior plan isn’t working
  • placement isn’t working
  • parent wants to discuss further evaluation by the school or an independent agency

Under the IDEA, family members and/or caregivers who participate on the IEP team have the right to request an IEP meeting any time there are concerns.

PAVE provides a short video overview of the IEP and an article about SMART goals and progress monitoring. For guidance about how to approach a meeting during the COVID-19 pandemic, PAVE offers tips for prepare for a virtual meeting and this article: Key Information and Creative Questions for Families to Consider During COVID-19 Closures.

Below is a sample letter families and caregivers can use when writing a request for an IEP meeting:

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 (son/daughter), 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 that 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 (her/his) 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 hope that a copy of the IEP draft will be provided to me before our team meeting so that I will have the opportunity to review the document and prepare for the 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 son/daughter. 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.

Home for the Holidays: The Gift of Positive Behavior Support

Posted on by Nicol Walsh

A Brief Overview

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

Full Article

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

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

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

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

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

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

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

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

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

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

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

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

Here is an example:

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

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

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

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

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

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

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

Make a list and check it twice: Prevention is key

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

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

Respond quick as a wink: Reward replacement behavior

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

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

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

Here are steps to help teach replacement behaviors:

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

Praise a silent night

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

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

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

All is calm: Intervene at the first sign of trouble

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

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

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

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

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

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

Believe: Be a beacon for hope

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

Here are a few points to review:

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

Resources:

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

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

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

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

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

Disability History Month Provides Opportunities for Reflection

Posted on by Nicol Walsh

A Brief Overview

  • October is Disability History Awareness Month, providing an opportunity for policy makers, teachers, families and people throughout communities to reflect on the disability rights movement and work that still needs advocacy.
  • State agencies collaborated to share biographical videos of middle-school students talking about their own diverse experiences with disability: One Out of Five: Disability History and Pride Project.
  • Understanding how historical actions have impacted the vocabulary of disability rights can help families in current advocacy. The ADA Legacy Project features specific “Moments in Disability History” with videos, articles and other archival materials.
  • This article highlights some key laws and legal actions that have impacted school access for students with disabilities.

Full Article

In the early part of the 20th century individuals with developmental, intellectual and other disabilities were often isolated from their communities and denied basic access to education. Many lived in large institutions, and it’s well known that those asylums were traumatizing for individuals and segregated them from their families. 

October is Disability History Awareness Month, providing an opportunity for policy makers, teachers, families and people throughout communities to reflect on the disability rights movement. Many agencies provide videos about disability history. Here is one 7-minute documentary that provides a summary of the eugenics* movement through current laws that protect rights for educational access: Disability Rights Activist Movement Documentary.

*Note: Eugenics involved the forced sterilization of individuals because of disability conditions. Parents may want to discuss topics in a developmentally appropriate way before sharing this or other historical information with children. An online children’s encyclopedia called Kiddle provides Eugenics Facts for Kids.

Washington State in 2008 passed a law that requires public schools to promote educational activities to enhance awareness of disabilities and the history of protections available to individuals with disabilities. A collection of historical biographies and artwork by school children is available online. The Revised Code of Washington (RCW 28A.230.158) includes this statement of findings:

“The legislature finds 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.”

The Office of the Educational Ombuds (OEO), in collaboration with the Rooted in Rights documentary project that is part of Disability Rights Washington, created a set of biographical videos of middle-school students talking about their own diverse experiences with disability. Access the videos and other educational materials on OEO’s website under the project’s title: One Out of Five: Disability History and Pride Project.

“One out of five people in the United States has a disability, and this resource is designed to celebrate the history and identities within this large and diverse community,” OEO states on its introductory page for the project.

Note: OEO provides online resources and 1:1 support when special education issues are not resolved through collaboration. A PAVE article about conflict resolution describes OEO as one of the “Three O’s” that can assist families when there is a question about whether student rights are being upheld. OSPI and the Office for Civil Rights are the other two O’s.

Disability rights activities can be traced back hundreds of years. Diversity Inc provides a PDF timeline that starts in the mid-1700s, with information about early hospital wards for individuals with mental illness. A few key historical points of note on this extensive timeline include passage of the Social Security Act of 1935, the launching of Medicaid in 1965 and the 1978 founding of US Department of Education’s National Council on Disability.

Understanding how historical actions have impacted the vocabulary of disability rights can help families in current advocacy. In an article providing history about special education law, the US Department of Education includes data showing that in the early 1970s, public schools educated only one out of five children with disabilities. Even though civil rights laws had been written and enacted, many states still had laws rejecting children from schools because they were deaf, blind, emotionally disturbed, or intellectually disabled.

Parent Centers like PAVE, which began in 1979, participate in making sure that families and individuals understand disability rights and how history has impacted current protections and the language of disability rights. 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.

 1972: Key State Precedents

  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 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

In 1975 Congress passed 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 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.

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.

The Minnesota Council on Developmental Disabilities celebrates the impact of the Americans with Disabilities Act with the ADA Legacy Project. To honor the contributions of individuals with disabilities and their allies who persevered in securing the passage of the ADA, the project features 31 specific “Moments in Disability History” with videos, articles and other archival materials:

“In order to fully realize a world where all people are accepted and valued, it is crucial to preserve and promote the history of the ADA and the disability rights movement.”

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 asses 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. 

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)

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.

Legal actions influence ongoing changes

Special Education Law impacts what happens every day at school and with a child’s Individualized Education Program (IEP). A few prominent lawsuits have influenced the way special education laws are interpreted. Following are a few examples.

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.

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.

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.”

Special education law continues to evolve

Interpretation of the IDEA continues to evolve as the US Department of Education creates documents to guide schools in how they understand and follow the law. “Dear Colleague” letters guide school staff to apply legal principles in daily practice. There are letters about IEP, FAPE, early learning, least restrictive environment (inclusion principles), alternative learning environments (such as Charter Schools), bullying and many more topics. Some letters review recent legal proceedings related to special education. For example, courts often discuss how schools are providing FAPE (Free Appropriate Public Education), and their rulings further fine-tune how the schools are meeting their obligation to provide FAPE for students with identified disabilities. A library of these letters and other federal guidance and memos is available on the website of the Office of Special Education Programs (OSEP).

Ideas to Support Children and Families Impacted by Abuse, Trauma and Divorce

Posted on by Nicol Walsh

Brief Overview

  • The National Education Association (NEA) recognizes that childhood experiences related to domestic abuse, trauma or divorce affect education. This article includes recommendations for teachers, family members or other adults who might advocate for a student who needs more help due to challenging life circumstances.
  • Researchers agree that a trauma-sensitive approach to special education can be critical and urge schools to approach discipline with caution in order to avoid re-traumatizing students.
  • After a divorce, both parents participate in educational decisions unless the divorce decree or another court action specifically removes a parent’s rights. This article includes tips for navigating those circumstances. A parenting plan that designates a primary parent for school interactions is one idea.
  • Schools can accommodate survivors of domestic abuse to help them participate safely in the special education process for their children. Alternative meeting spaces are among ideas further described below.

Full Article:

Students who experience trauma often have a rough time staying emotionally stable and keeping their behavior on track for learning at school. Research about Adverse Childhood Experiences (ACEs) lists many childhood conditions that impact a person’s lifelong health and access to opportunities. High on the list are trauma from domestic abuse and divorce. For many families, complex trauma includes both.

A child’s response to trauma may look like disobedience or lack of motivation. A family member or teacher might notice that a child is regressing. A student may have delays in social communication or emotional regulation–skills schools teach in an emerging area of education called Social Emotional Learning. Some children survive severe distress but don’t demonstrate obvious changes in behavior or disrupt the classroom. In all cases, figuring out what’s happened and how to help requires a thoughtful, individualized process.

A family member, school employee or any concerned adult can respond by seeking an evaluation to determine whether the student has a disability and qualifies for services delivered through an Individualized Education Program (IEP) or a Section 504 plan.

Note: Section 504 is part of the Rehabilitation Act of 1973, which protects individuals with a disabling condition that impact a “major life activity.” An article on PAVE’s website further describes Section 504 and the differences between a 504 Plan and an IEP. PAVE also provides comprehensive articles and on-demand webinars about special education process, the IDEA, evaluation, and other topics listed under Learning in School at wapave.org.

A behavioral or emotional disability that significantly impacts access to learning can qualify a student for an IEP under the Individuals with Disabilities Education Act (IDEA) if the student demonstrates a need for Specially Designed Instruction (SDI). Among the IDEA’s 14 qualifying categories of disability are Emotional Disturbance, which captures a variety of behavioral health conditions, and Other Health Impairment, which sometimes captures conditions related to attention deficit, anxiety or depression. A child who isn’t found to have a qualifying disability might benefit from a behavior support plan or counseling services at school. 

Supporting and educating students with trauma histories has become a priority for the National Education Association (NEA), with a specific focus on students who have experienced or witnessed domestic violence, sexual abuse and related traumas.

The problems are widespread: More than half of women who experience domestic violence have children younger than 12, and data indicate that nearly half of those children witnessed the abuse.

Response to a child’s symptoms may be complicated by cultural considerations: Some cultures may be more accepting of abuse, less trusting of authorities or afraid of the fallout within the community. An agency in Washington that helps when multicultural issues create barriers is Open Doors for Multicultural Families.

Best Practice Strategies to Help

On its website, the NEA offers an article: Best practices for supporting and educating students who have experienced domestic violence or sexual victimization. The article provides strategies to support traumatized students. Here is a summary of some points:

  • Provide structure, a sense of security and a safety plan: “Children who experience abuse often yearn for structure and predictability.”
  • Help students understand available support and the teacher’s role as a mandated reporter: “The larger the number of people available to listen to a student, the more likely that student is to disclose abuse.”
  • Validate and reassure the student: “Provide non-judgmental, validating statements if a student discloses information. Sample statements include That must have been scary or It must be difficult to see that happening.”
  • Identify triggers of anxiety or challenging behavior: “…be prepared for negative emotions and behaviors from the student in response to triggers.”
  • Use a daily Check In to provide a solid foundation for relationship building: “It can be helpful to use pictures or a rating scale to help students identify and label their emotional states.”
  • Directly teach problem solving skills: “Be honest with students about how you’re feeling and talk through your actions in response to challenging situations.”

Domestic Abuse is Common

Understanding the nature and prevalence of domestic abuse can grow compassion, combat stigma and promote shared problem-solving. The National Coalition Against Domestic Violence (NCADV), defines domestic violence as “willful intimidation, physical assault, battery, sexual assault, and/or other abusive behavior as part of a systematic pattern of power and control perpetrated by one intimate partner against another.”

Acts of domestic violence can be physical, sexual, threatening, emotional or psychological.  Statistically, 1 in 4 women and 1 in 9 men experience some form of domestic violence; its prevalence is noted among all people regardless of age, socio-economic status, sexual orientation, gender, race, religion, or nationality.

How to Notice Something is Wrong

When domestic abuse impacts a child’s access to education, figuring out how to help requires thoughtful consideration. The NEA describes specific characteristics of children who have experienced trauma and how their ability to function is compromised. Here is a summary from NEA’s article:

Regulation

  • Children may find it hard to explain their emotional reactions to situations and events.
  • They may appear inattentive or hyperactive—or fluctuate between both.
  • Loud or busy activities can trigger a confusing reaction: a child might lose control about something that is usually a favorite.

Social Skills

  • Children may have “disordered social skills,” playing inappropriately or lacking typical boundaries.
  • They may withdraw socially or try to control situations in ways that seem rude or look like bullying.
  • They might develop “friendships” based on negativity and be unable to develop high-quality, appropriate friends.

Cognitive Function

  • Children impacted by trauma may be mentally overwhelmed and struggle to follow directions or shift from one activity to another, even with prompting. (Adults may mislabel these cognitive inabilities as deliberate or defiant behaviors.)
  • Children may overly depend on others but struggle to ask for help.
  • An impaired working memory can make it difficult for the child to start or finish a task, pay attention and/or concentrate.

Evaluate with Trauma in Mind

The Federation for Children with Special Needs provides a downloadable article called Trauma Sensitivity During the IEP Process. The article provides suggestions for making the evaluation process trauma sensitive and includes this statement:

“By becoming aware that violence may be at the heart of many of the child’s learning and behavioral difficulties, school personnel may be able to mitigate much of the lasting impact of trauma.”

The federation urges schools to approach discipline with caution in order to avoid re-traumatizing students and encourages use of the Functional Behavioral Assessment tool and a framework of Positive Behavioral Interventions and Supports (PBIS):

“Self-regulation describes the ability of a child to ‘put the brakes on’ in times of emotional stress. Traumatized children are hyper-aroused; they view their world as dangerous and unpredictable and they are prepared to react in a moment’s notice, usually in inappropriate (and possibly unsafe) ways…IEP Team Meeting members can go a long way towards ameliorating this hyper-arousal by asking for Functional Behavioral Assessments to ascertain the reason for the inappropriate reactions as well as ways to replace the behaviors with better coping skills and strategies.”

A trauma-informed approach at school meetings can help the team figure out why unexpected behaviors happen or why academic progress seems so hard to achieve. Promoting healthy relationships by designing intentional time with trusted adults and developing a creative strategy for Social Emotional Learning (SEL) at school are strategies the team can discuss. A trauma-informed approach, the federation contends, “encourages educators to ask, What happened to you? instead of What’s wrong with you?”

When Divorce Complicates Work with the School

Another domestic issue that sometimes complicates circumstances for families navigating special education is divorce. The US Department of Education stresses that parents or legal guardians are decision-makers for their children. Whether parents are married or separated, they both are equal decision-makers in special education process unless the divorce decree or another court action specifically removes that right.

A parenting plan can be written with specific instructions about which parent is the educational decision maker.

The school needs a copy of the parenting plan in order to follow it. Without a plan in place, either parent who shares joint legal custody can sign an educational document that requires parental consent, even if the student lives full time with only one parent. Parental rights include access to records and educational information about the student. A non-custodial parent has the right to be informed of meetings and attend meetings.

Parents with joint custody who share parenting decisions may want to draft an agreement with the school to specify how the child’s time is divided and which parent is responsible for specific days, activities or meetings.

Schools Can Offer Safe Space

If one partner has been abused and there is no restraining order to prevent the non-custodial parent from attending school meetings, schools can accommodate the domestic abuse survivor by offering a separate meeting in a different space, at a separate time.

If a parent is bound by a restraining order, the IEP team will need to determine whether the order limits access to the school building and whether the order specifies that the parent has lost rights under the IDEA. If the order limits building access, but does not limit IDEA rights, then that parent has the right to attend a meeting in another space or by phone. A restraining order might include “no contact” with the child, and the meeting must ensure that the child’s safe distance from the parent is protected.  

Visit the following websites for additional information:

Access Rights of Parents of Students Eligible for Special Education (Washington State)

Best practices for supporting and educating students who have experienced domestic violence or sexual victimization.

In the Best Interests of the Child: Individualized Education Program (IEP) Meetings When Parents Are In Conflict (PDF)

Divorce: It Can Complicate Children’s Special Education Issues

Adverse Childhood Experiences (ACEs)

Trauma Sensitivity During the IEP Process (PDF)

Trauma Informed Schools Resources (OSPI)