Tag: advocate

Myth and Misunderstanding in Special Education

Posted on by Nicol Walsh

A Brief Overview

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

Full Article

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

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

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

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

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

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

Parent Participation

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

Evaluation

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

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

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

Medical Diagnosis

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

Placement

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

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

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

Adult Aids at School

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

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

Section 504

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

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

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

Bullying

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

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

IEP Goals and Process

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

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

Behavior and Discipline

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

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

Privacy

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

Literacy

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

Graduation

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

Private School and Home School

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

Parent Support from PAVE

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

Surrogate Parents Support Unaccompanied Students in Special Education

Posted on by Nicol Walsh

A Brief Overview

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

Full Article

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Advocacy Tips for Parents

Posted on by Nicol Walsh

When a child has a disability, parents often learn that getting their child’s needs met requires persistence, organization, and advocacy. Advocacy is an action. A person is an advocate when they organize the work and press onward until a goal is achieved. Laws that protect the rights of students with disabilities also protect parents as legal advocates for their children.

This article includes tips for parent advocates working with the school. For more about parent rights, read PAVE’s article, Parent Participation in Special Education Process is a Priority Under Federal Law.

Before a meeting…

  • Invite someone to attend with you. A friend or family member can help you take notes, ask questions, and keep track of your agenda.
  • Make sure you understand the purpose of the meeting. Is it to talk about an evaluation, review the Individualized Education Program (IEP), write a Section 504 Plan, consider a behavior support plan, discuss placement, or something else? If you want a certain outcome, make sure it’s within the scope of the meeting. If not, you may need more than one meeting.
  • Make sure you know who will be at your meeting. An IEP team has required attendees. PAVE provides more detail about IEP team requirements in an article that includes a Sample Letter to Request an IEP Meeting.
  • Consider anyone else you want to attend. Parents have the right to invite vocational specialists, related service providers, behavioral health providers, peer support specialists—anyone with knowledge of the student and their needs.
  • Get copies of important documents (evaluation, IEP, 504 Plan, behavior plan, etc.). Read them carefully so you can use these documents to organize your concerns and questions. Keep in mind that a services program/plan is a draft until after you meet.
  • If the school doesn’t provide documents with enough time for you to prepare, consider rescheduling.
  • Mark up a Draft IEP with your suggestions and questions:
    • Read the educational impact statement carefully. Consider if it accurately summarizes your student’s strengths and needs. If not, makes notes about what you want to add or change.
    • Note any changes you want under Medical/Physical or Parent Concerns.
    • If a goal is too hard or too easy, make a note to ask about adjusting it.
    • If a goal is written with jargon and impossible to understand, ask for an explanation and maybe a rewrite
    • Prepare to ask how teachers are using Specially Designed Instruction (SDI) to help your student reach IEP goals.
    • Read the services table, sometimes referred to as a “services grid” or “services matrix” to understand how often and where your student is being served.
    • Consider any questions you have about placement or access to general education settings. If you believe your student could be successful in general education for more of their day, consider what supports would make that possible.
    • Write down any questions about how the classroom or curriculum are adapted to be accessible. You might ask if the teachers are using Universal Design for Learning (UDL) strategies to support multiple types of learners.
    • Write down your questions about progress and how it’s being tracked.
  • For an IEP or 504 Plan, read the accommodations carefully and make notes to ensure they are individualized and implemented to truly support your student.
  • Highlight anything in the behavior plan that sounds like bias or prejudice and consider how it might be rewritten. PAVE provides examples in a video training about development of a Behavior Intervention Plan.
  • To help you organize your questions and concerns, PAVE provides: Get Ready for Your Meeting with a Handout for the Team.
  • Learn about student and family rights and practice the vocabulary that empowers your advocacy. PAVE provides a three-part video training to help: Student Rights, IEP, Section 504 and More.

At your meeting…

  • Do your best to arrive on time to make sure there is time to address concerns. If you notice there may not be enough time to do this, request to schedule another meeting.
  • Make sure the meeting begins with introductions and that you know everyone’s job and what role they serve on the IEP team. If it’s important to you, when you introduce yourself you can ask team members to use your name instead of mom, dad, gramma, or something else other than your name when they refer to you.
  • Ask school staff to explain acronyms or jargon while they are talking because you want to understand what everyone says.
  • If an IEP team member is absent (WAC 392-172A-03095), parents must sign consent for the absence. If someone is missing and you don’t think it’s appropriate to continue, ask to reschedule. If key members need to leave before the meeting is over, consider ending the meeting and schedule an alternative day/time.
  • Keep focus on your student’s needs. Here are a few positive sentence starters: I expect, I understand, My child needs….
  • If you notice the conversation steering into past grievances, the district’s lack of funds, or what “all the other children” are doing, bring focus back to your child and their current needs. Try stating, “I want to focus on [name].”
  • Use facts and information to back up your positions and avoid letting emotion take over. Ask for a break if you need time for some regulated breathing or to review documents or notes.
  • Notice other team members’ contributions that support your child’s needs. Here are a few phrases to consider:
    • “I think what you said is a good idea. I also think it could help to…”
    • “I think you are right, and I would like to add…”
    • “I hear what you are saying, and…”
  • If you don’t understand something, ask questions until the answer is clear.
  • If you disagree about something and your comments aren’t changing anyone’s mind, explain that you want your position included in the Prior Written Notice (PWN), which is the document the school is required to send immediately after an IEP meeting.
  • If you hear something confusing, ask the school to put their position and rationale in writing so you can follow up.
  • Request to end the meeting if it stops being productive. Tell the other team members that you would like to continue working with them and ask to schedule another meeting. This might include adding people to the team to help resolve issues.

After a meeting…

  • Review your notes and highlight or circle places where there is an action or something that needs follow through. Transfer relevant information into your calendar.
  • When the Prior Written Notice (PWN) arrives (usually within a few days), compare it to your notes. Make sure all key agreements, actions, and IEP/504 amendments match what you understood to be the plan when you left the meeting.
  • If you want something changed in the PWN, ask for those changes in writing.
  • If you disagree with the outcome of the meeting, review your Procedural Safeguards (downloadable in multiple languages) and consider your dispute resolution options.
  • If you consider filing a Community Complaint, PAVE provides a video training to walk you through that option.
  • Consider contacting school district special education staff if they didn’t participate in the meeting and you think your team needs more support.
  • Consider asking for another meeting, Mediation, or a Facilitated IEP meeting, if issues are unresolved.

PAVE’s Parent Training and Information (PTI) program can help family caregivers organize their concerns and options. Click Get Help for individualized assistance.

Quick Start Your Advocacy in Two Steps

Posted on by Nicol Walsh

Asking for something you want or need for yourself or someone you love can take courage and inner strength. The ask is easier when you have basic advocacy tools. This short video provides a two-step process to help advocates step into their role with more confidence.

Here are the words that go with the video:

Being an advocate means speaking up to request something and pressing onward until the goal is met. The best advocates are really clear about two steps you cannot skip:

  1. Know what you want, and;
  2. Know who has the power to make that possible.  

This may sound obvious, but it’s not always easy. Let’s break it down with an example.

This is Julia—she’s a mom. Her 7-year-old son, Jose, isn’t learning to read like other kids his age. Julia wonders if Jose might have a learning disability. She mentions this to the attendance secretary one morning. Nobody contacts her. She assumes her worries are wrong or not important.

Hmmm, that doesn’t sound quite right, does it?

If she applies our two-step guide to advocacy, Julia can try again. She starts here:

  1. What does she want?
  2. Who has the power to make that happen?

First, she wants her son to get more reading help at school. Second, a classroom teacher or a special education teacher might help, but the attendance secretary is not the right person to ask.

It will take some work to press onward. Julia may need an appointment to formally talk with Jose’s teacher or a school administrator to get her advocacy project started. Here are some questions she might ask:

  • What do I do if I think my son might have a learning disability?
  • Is there a form for me to request a special education evaluation?
  • Who should I send my request to?
  • When will I get a response?
  • What’s the process for getting services to help my son?
  • What are my options if I disagree with the school’s decision?

Making a list of questions is an advocate’s homework. Taking careful notes helps with planning and often leads to faster results.

Remember, Julia wants her son to get more help learning to read. Her questions will help her figure out who to work with and what to do next.

Advocacy requires persistence. Don’t give up, and keep your eye on these two questions:

  1. What do I want?
  2. Who has the power to work with me and make that happen?

Telling Your Story with a Purpose: How to Inspire Action in Two Minutes

Posted on by Nicol Walsh

Every person’s story has the potential to impact how others think or act. Disability rights have been legislated because of individuals who spoke up and sparked change. This video introduces a strategy for telling a potent story in two or fewer minutes, using your own hand to guide the process. Think of this as a hand model for an inspirational elevator speech to improve or inspire:

  • Self-advocacy
  • Public comment
  • A meeting with public officials
  • Legislative forums or candidate meetings
  • Community education

 The Arc of Washington State provides pathways for people to participate in legislative advocacy. The Arc serves people with intellectual and developmental disabilities of all ages and their families. 

Some staff members at PAVE are certified to teach Telling your Story with a Purpose, a training created by the state’s Department of Health and Seattle Children’s Hospital. For support to create your story, fill out a PAVE Helpline request, and a trained staff member will contact you.

Questions to consider first:

  1. What is the challenge or problem that you, your child or your family faces? Think of a problem that also affects other people and families. Consider writing one sentence about people in general and one sentence about your own story, child, or family. 
  2. How does this challenge affect others?
  3. How might this challenge affect others if nothing changes?
  4. What needs to change?
  5. What can be done to improve the situation?
  6. Who has the power to make a change? 

Key information for your story:

  1. Who are you?  Be sure to say your name and the district, city, or town you live in.
  2. If you want to include information about other people be sure you have permission before sharing anything confidential, such as names, ages, or health information.
  3. Clearly and simply describe the problem or challenge.
  4. Explain why this is important.
  5. Include a short story (4-5 sentences) about how this issue has affected you and your family. If possible, use a positive example – a situation where things went well and why you want others to have a similar experience.
  6. What do you want your listener to do? State your request in one sentence with 30 or fewer words. Avoid a general request for “support.” Provide a clear action:
    • “I ask you to vote for…”
    • “I want you to change this policy in order to…”
    • “I want you to fund a program that…” 
  7. Stop and check: Consider if your comments might make the listener feel criticized or attacked. Focus on the solution. Make sure you’ve included statements about how others in the community can benefit.
  8. End by restating your request and saying thank you. When possible, thank the listener for something they have done in the past that you appreciate–voting for a bill, serving on a committee, funding a program. 

Self-Advocacy: Becoming an Active Member in Your Community

Posted on by Nicol Walsh

If you have ever stood up and defended the rights of yourself or others you were acting as an advocate.

Self-advocacy means taking the responsibility for telling others what you need and want in a respectful and direct way.   Anyone can be a self-advocate and while speaking up for you or someone else can make you feel empowered, independent and more in charge of decisions for your life, it is not always an easy thing to learn how to do. It takes time and practice.

Good self-advocates are informed about the topic they are sharing with others.  They speak clearly and calmly and they listen to others and consider the information that they are hearing as well.

Times that you might need to be a self-advocate could be:

  • In your IEP meeting if you are in high school
  • When you ask for accommodations for classes in high school or college
  • Asking for accommodations on the job.
  • Asking for assistance and accommodations so that you can be involved in your community.

Things you need to know to become a better self-advocate:

  • Understand your rights and responsibilities.
  • Make decisions based on what you want or need
  • Say yes or no
  • Know that its ok to change your mind
  • Know that its ok to make mistakes
  • Express your feelings in a safe and reasonable way
  • Know who your trusted support persons in your community are that you can ask for help when needed.
  • Be safe
  • Be treated with dignity and respect at all times
  • Learn to be assertive without being aggressive or disrespectful

It is important to have confidence in yourself, you know more than you may realize.  Being prepared is important and some things to remember are:

  • The goal is the wellbeing of the person you are advocating for
  • Communication skills, respond don’t react. Avoid seeing others as the enemy.  Try to be diplomatic
  • Learn how to read IEP
  • Maintain good records and request everything in writing.
  • Take notes or have someone take notes during meetings.
  • Don’t attend meetings alone. If you can bring someone with you for support and to help take notes, it really helps.  Try not to attend meetings alone.
  • Remember you are teaching by modeling good behavior and effective communication. Your efforts won’t just affect yourself and/or your loved one, but the community as whole as well.
  • Assert yourself with common courtesy but be firm. Begin with the end in mind and don’t let yourself get side tracked.

Another important thing to do in order to be a good self-advocate is getting to know your community.  What kind of resources are there that can help you?  You may gain knowledge and support from connecting with resources like: local support groups, advocacy agencies, faith communities, community associations, and private providers.

Each county has resources that can connect you to the special needs community.  PAVE has great programs and resources to help individuals build and strengthen self-advocacy skills such as Community Inclusion for Everyone (CIE) and Parent Training and Information (PTI).  You can go to PAVE’s website at www.wapave.org  to learn about additional programs.  Also, you can connect with your local DDA coordinator to get a listing of other local agencies and support groups/programs in your area such as Parent to Parent, People First, and others.  Attending local meetings is a way of connecting with like-minded people who have some of the same passions you do and can help you gain a deeper understanding of local relevant issues.

Becoming a strong self-advocate is key in achieving successful independence and healthy living as an adult in your community.  Always remember there are many people who are ready and willing to help you, so don’t be afraid to reach out and ask for assistance along the way!

‘What’s wrong with your brother?’

Posted on by Nicol Walsh

As a second grade student, this was a daunting question.

I knew Josh was different, but I didn’t know how to adequately explain the nature of his disability; he was just Josh, my brother. I was fortunate enough to grow up in an unwaveringly accepting and unconditionally loving family, as well as being a rather outspoken child, so I was able to converse with my parents about what exactly made Josh different and to find the best way to address these questions.

According to the Arc of the United States, an estimated seven million ‘typically developing’ American children have a sibling with a disability. These siblings often face many of the same challenges and joys as their parents, but they are also faced with their own set of unique tribulations. When a child with a disability is welcomed into the world an array of resources and supports become available to help educate and support parents as they begin their journey into the world of disability activism, but often times in the whirlwind of change and adaptation siblings aren’t directly addressed.

Growing up with a sibling with a disability gave me the opportunity to connect with others in similar situations to share stories and ask questions. We each share an unconditional love for our siblings—laughing about comical things they say or do, joking about the things that annoy us, the sort of stories you would expect to hear about ‘typical’ siblings. Amongst these conversations we also expressed the difficulties of having such a sibling; what it was like to be embarrassed to go out into public for fear of an outburst that would attract unwanted attention, dealing with less of our parents’ attention because our sibling required more, not knowing how to explain to our friends why they couldn’t come over to play, and most of all, dealing with the guilt of having these feelings in the first place.

In my opinion, my parents provided my brothers and myself with the most beneficial forms of support. We maintained open lines of communication and it was acknowledged and accepted that Josh had a disability. We were also provided with the scientific facts about his disability, so when posed with questions by uncertain peers we felt confident giving an intelligent answer. Often times that confidence put others insecurities at ease. Our feelings were always acknowledged and validated, and we learned as a family what it was that each member needed to feel appreciated and supported.