What is Person Centered Planning?

What it is?

Person-centered planning is all about making decisions that focus on you as a unique individual. It’s about listening to what you want and need, and then working together to make those things happen.

Woman who uses a wheelchair smiles while holding her phone.

Get Involved! Become a Person Centered Planner.

Training sessions are starting soon! Seize this chance to make a positive impact on other’s lives while pursuing your dreams!

Who we are looking for:

  • Individuals with disabilities who are inspired to lead and innovate.
  • Motivated persons interested in personal and community development.
  • Aspiring entrepreneurs looking to create a significant impact through their own business.

What Are the Benefits?

  • You’re in Charge: With person-centered planning, you get to take the lead in making choices about your life. It’s about giving you the power to decide what’s best for you.
  • Tailored Support: Instead of fitting you into a standard plan, person-centered planning creates a plan just for you. It’s like having a customized roadmap to help you reach your goals.
  • Looking at Everything: This approach looks at all parts of your life, not just one aspect. It helps make sure you get the support you need for everything that matters to you.
  • Feeling Good: When you’re in control and getting the support you need, it can make life more enjoyable and fulfilling. Person-centered planning helps you feel good about yourself and your future.
  • Working Together: It’s not just about you making decisions alone. Person-centered planning brings together everyone who cares about you to help support you on your journey.

What Makes it Special?

  • You’re the Focus: Person-centered planning is all about you. It respects your thoughts, feelings, and dreams, putting you at the center of everything.
  • It Adapts: Life changes, and so do your needs. Person-centered planning is flexible and can change and grow with you as you move forward.
  • Thinking Long-Term: It’s not just about today but your future, too. Person-centered planning helps you set goals for the long haul and supports you in reaching them.
  • Being a Part of Things: This approach encourages you to be involved in your community and pursue things that matter to you, like school, hobbies, and friendships.
  • Feeling Strong: Person-centered planning helps you become more confident and independent. It’s about empowering you to speak up for yourself and make choices that shape your life.

If you’re interested in learning more about person-centered planning:

For Teachers: If you’re a teacher and would like assistance from a PAVE staff member to help your students develop a plan, please contact us for pricing details.

For Parents: If you’re a parent who believes your child could benefit from a person-centered plan, inform your child’s teacher to contact us.

You can get in touch with us at: pcp@wapave.org

What Will Happen When We’re Gone? Planning for the Future for Your Child with Disabilities, Part 1: Ages Birth to 12

Overview:

Full Article

Thinking about the future when you will no longer be available to help your child because of death or a condition where you cannot participate in their care can be emotionally difficult. On top of that, this planning process is full of important decisions with significant impacts on your child’s future. To prevent being overwhelmed, it may help to review the entire article, and then tackle the tasks and steps needed to create a plan.

Legal Planning. You will need:

  • A will:If you die and either don’t have a will or don’t specify a guardian in your will, the courts will appoint someone, and it won’t necessarily be a family member. It could be a complete stranger. A will usually includes almost all your instructions for how you want your child to be cared for when you die.
  • A Letter of intent: It expresses your wishes for your child which are not included in the will. It has no legal standing, but acts as a guide for guardians, Power of Attorney agents, and trustees.  It can be provided to your selected guardians and a copy can be saved with the lawyers who helped you set up your will and Powers of Attorney.
  • Powers of Attorney (POAs): Create agents, people who can legally act on behalf of your child for financial, health care and other life areas. They are selected by you, for after your death or when you are temporarily or permanently not capable of caring for your child. These agents do not have to be the same people you select as guardians. These are legal documents best prepared with the help of a lawyer and must be notarized.

Wills:

Who will be your minor child’s guardian? What will they need to know about your child?
How will your child be financially supported while a minor? It’s recommended that parents select someone different than the guardians to manage their child’s finances. Think about close friends as well as your parents or siblings. If your child is older, think about adults with whom your child has a bond. This can help if you want your child to continue in their current school, job, or neighborhood.
List each child individually when naming a guardian, and list all your minor children. Probate courts will not assume you want the same guardian for all your children unless you list them that way and might appoint a separate guardian for unlisted children!

            For ex: “I/We name Harold and Maude Green as guardians for our minor children Georgia Brown, Michael Brown, and Theodore Brown”.

Important: Do not directly leave your child with disabilities any money or assets in your will. Instead, have that child’s share of their inheritance pass to a Special Needs Trust and/or ABLE Account (as described below). Note that in this situation, it’s good to have a lawyer draw up the will to make sure that the inheritance does not impact your child’s current or future benefits, such as Social Security programs or Medicaid.

Financial Planning

Government Benefits: For the present time, and for your child’s future

Supplemental Security Income (SSI) for your child at any age. The SSI program makes cash assistance payments to aged, blind, and disabled persons (including children) who have limited income and resources. Many states pay a supplemental benefit to persons in addition to their Federal benefits.

People who qualify for SSI may, in some states, qualify for Medicaid health insurance, which is either free or low-cost.

Social Security Disability Insurance (SSDI) program for disabled and blind persons. The amount of the benefit is based on your child’s contributions to Social Security OR based on the parents’ earnings. Your child must meet Social Security criteria for disability.

Social Security Administration provides a useful comparison chart on important differences between the two programs on their Red Book page.

Payments from either program are often not enough to pay for everything your child may need or want, and any money or assets in your child’s name may cause their Social Security benefits, Medicaid coverage, and other benefit programs (supported housing, SNAP /food stamps, etc.) to be cut back or eliminated.

Funding your child’s future directly

Special Needs Trusts and ABLE accounts are ways to provide for your child financially that do not reduce their government benefits. They differ in many ways, with their own pros and cons. You might wish to have both an SNT and an ABLE account based on your family’s circumstances.

An ABLE account is a tax-advantaged savings account that can fund disability expenses. Currently, the beneficiary of the account (the person with a disability) must have acquired the disability before age 26, and this age limit will increase to before age 46 on January 1, 2026. The beneficiary of the account owns the funds. Interest (income) earned by the funds will not be taxed. Anyone can contribute to the account (the individual with disabilities, their family members, friends, or a Special Needs Trust).

The funds in the ABLE account are generally NOT COUNTED as income or assets against an individual’s eligibility for SSI, Medicaid, and other programs with income and asset limits, such as federal student aid, HUD housing programs, and SNAP (food stamp) benefits.

Money from an ABLE account may be used for disability-related expenses to supplement benefits through private insurance, Medicaid, SSI, employment, and other resources. The ABLE National Resource Center gives specifics on ABLE accounts on their website.

Special Needs Trust (SNT): A trust is a legal “tool” for managing funds, and Special Needs Trusts are set up so that the beneficiary of the trust, in this case your child with disabilities, can have the funds used on their behalf. Money in the SNT is not counted against income limits for government benefit programs. You can arrange for the Special Needs Trust to be the beneficiary for life insurance policies and retirement plans. You can let friends and relatives know that they can give or leave money/assets to your child through the trust.

Government benefits will cover most of the basic needs while monies from the trust can pay for your child’s wants. Only a qualified attorney should set up the trust. If it is done incorrectly, your child’s benefits could be at risk.

There are several types of SNTs. The one most commonly set up by parents or guardians for a child is called a third-party special needs trust, which means that the funds in the trust are from someone other than the child. Military parents may designate Survivor Benefit Plan payments to an adult dependent child with disabilities, but only through a first party trust.

NOTE: Unlike ABLE accounts, which were set up according to federal law, there is no “official” source of information on Special Needs Trusts. Many elder and disability law practices will have information on their websites about SNTs. Additional information from disability organizations can be found at:

ARC of the United States: Type “Special Needs Trust” in the search bar to find a large number of articles on the topic, not only for individuals with developmental disabilities.

Military OneSource: Type “Special Needs Trust” into the search bar for military-specific information on SNTs.

It’s important to know that a professional should help you create the SNT. Consult with an attorney with expertise in elder and disability law. When naming trustees, it’s important to not only name yourselves, but to name backup (“secondary”) trustees to cover situations when you are not able to act as trustees. Setting up secondary trustees is separate from setting up agents using a Power of Attorney (POA). The authority of an agent under a POA may not be accepted by the financial or legal organization where the trust funds are held. You may choose to use the same individuals you selected for your financial POA, or different people.

Special Needs Alliance “is a national alliance of attorneys for special needs planning.”  They have a directory of attorneys which currently lists two attorneys in Washington State who are members of that organization.

You can search for attorneys with SNT experience through the American Bar Association.

Legal work can be expensive! Here are some resources to seek out free or low-cost help and referrals:

  • WashingtonLawHelp.org: This website has articles on topics about future planning, such as wills, guardianship of children and adults, alternatives to guardianship, Powers of Attorney, and information for non-parents raising children along with many others
  • CLEAR intake hotline: “CLEAR is the statewide intake line for free and low-cost civil legal aid in Washington. Call 1 (888) 201-1014 or use the online intake form on the website. Seniors (people age 60 and over) can access intake by calling CLEAR*Sr at 1 (888) 387-7111. Veterans may dial 1 (855) 657-8387”.
  • ABA Home Front: If you are military, and you do not wish to use your Judge Attorney General (JAG) or they do not have experience with Special Needs Trusts or other future planning when your child has a disability, the American Bar Association has several programs, including free or low-cost options, to locate an attorney or program with a focus on military families. Veterans can get free legal answers on this website, too!

For information on future planning steps in your child’s teen years and through adulthood, see PAVE’s article: What Will Happen When We’re Gone? Planning for the Future for Your Child with Disabilities, Part 2: Age 13 through Adulthood

Home for the Holidays: The Gift of Positive Behavior Support

A Brief Overview 

  • This article provides examples and simple guidance about how to be more strategic in parenting a child who struggles with behavior. 
  • 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. The holiday season 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,” Schmitz says. “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.” 

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 
  1. Provide many opportunities for practice 
  1. 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 —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 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: 

The Comprehensive, Integrated Three-Tiered Model of Prevention (ci3t.org) provides videos and other Related Resources for Families in English and Spanish (scroll down the page to find the Resources for Families). 

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 

Step-By-Step Guide to Requesting Accommodations on SAT and ACT Exams

The transition from high school to college can be a daunting experience for any teenager. Part of the transition process is preparing for and taking the entrance exams for college. If the student is receiving accommodations in school, they may qualify to receive special accommodations while taking a college entrance exam.

The ACT and College Board Services for Students with Disabilities (SSD) do not approve accommodations for all college entrance exams. Contact your school, college, or testing center for the CLEP and ACCUPLACER tests. Students with documented disabilities may request accommodations on PSAT-related assessments with the help of their school counselor.

Differences Between SAT and ACT Exams

Most universities accept both SAT and ACT and the length of both tests is approximately the same.  ACT has more questions in that same period, so fast workers may prefer it.  However, the best one for a student is the one they feel best about, so trying sections of both before choosing which one to study for is recommended by most test prep professionals. Both ACT and SAT have free practice sections available.

SATACT
Reading (65 min, 52 Questions)Reading (35 min, 35 Questions)
Writing (35 min, 44 Questions)English (45 min, 75 Questions)
Math (80 min, 58 Questions)Math (60 min, 60 Questions)
Optional essay (50 min)Science (35 min, 40 Questions)
Scored 400-1600Optional essay (30 min)
Scored 1-36

A student must have approval from the College Board SSD (for the SAT) or ACT to use accommodations on an exam. If a student uses extended test time or other accommodations without prior approval, their test results will be invalid.

The process of requesting accommodations varies depending on the exam. These are the steps to request accommodations on SAT and ACT college entrance exams:

Step 1: Document the need for accommodations.

The student must have a documented disability. Documentation can be a current psycho-educational evaluation or a report from a doctor. The type of documentation depends on the student’s circumstances. The disability must impact the student’s ability to participate in the college entrance exams. If the student is requesting a specific accommodation, documentation should demonstrate the difficulty the student has performing the related task. The College Board provides a disability documentation guideline and accommodation documentation guideline, as does the ACT. Doctor notes and Individualized Education Program (IEPs) or 504 plans may not be enough to validate a request for accommodations; you must provide supporting information, such as test scores. 

While students typically only receive accommodations if they have a documented disability, some (very few) students who have a temporary disability or special healthcare need can also be eligible. The request is different in these circumstances for those who wish to take the SAT exam and students are often urged to reregister for a date after they have healed. If the student cannot postpone their test, the request form for temporary assistance must be completed by a school official, student (if over 18) or parent, doctor, and teacher. Then, the form must be faxed or mailed to the College Board for processing.

Step 2: Allow plenty of time for processing.

It takes time to apply for accommodations, including a processing period of up to seven weeks after all required documentation has been submitted to the College Board SSD or ACT. If they request additional documentation, or if a request is resubmitted, approval can take an additional seven weeks. Start as early as possible before the exam date to allow enough time for processing, responding to a request for more documentation, and additional processing time. If the student will take the exam in the fall, they should begin the process in the spring to allow sufficient time for processing.

Step 3: Identify appropriate accommodations.

If the student has a formal education plan, review the current plan, and note accommodations listed throughout, especially (but not only) those the student uses during assessments. Read through recent medical evaluations, prescriptions, and records to ensure all accommodations have been included in the formal education plan, if the student has one, or to locate appropriate accommodations recommended by medical professionals. You may recognize some of the Possible Accommodations for SAT and ACT Entrance Exams.

Some accommodations may only be provided during certain sections of the exam, depending on the specific accommodation requested. For example, a student with dyscalculia may receive extended time during the math section of the exam but not for any other subject.

Step 4: Submit the request for accommodations.

The easiest way to request SAT accommodations is to go through your student’s school. If you choose to go through the school, the school’s Services for Students with Disabilities (SSD) Coordinator (Special Education Coordinator, Guidance/School Counselors, etc.) can go online to review the SAT Suite Accommodations and Supports Verification Checklist and submit the application. Having the coordinator submit the application will help streamline the process. Homeschooled students or those who choose not to go through the school may request accommodations on the SAT exam by printing the Student Eligibility Form and submitting all documentation by fax or postal mail.

Requesting accommodations for the ACT exam requires working with a school official who is a part of the IEP team. The accommodations requested should be similar to the accommodations currently being received in school and must be approved by ACT before the test. All requests, including appeals, must be submitted by the late registration deadline for the preferred test date. Homeschooled students may request accommodations on the ACT exam by creating an ACT account online and submitting the required documents electronically.

Step 5: Register for the college exam.

Once the student is approved for SAT accommodations, they will receive a Service for Students with Disability (SSD) number that must be included when registering for the test. The school’s SSD Coordinator should ensure all the correct accommodations are in place when it is time to take the college exam. Approved accommodations will remain in effect for one year after graduation from high school.

Additional Information

Dyslexia Screening and Interventions: State Requirements and Resources

A Brief Overview

  • Dyslexia is a common condition that makes it hard to work with language. Reading difficulties are one sign of dyslexia.
  • Washington passed a law in 2018 requiring schools to screen young children for indicators of dyslexia. The law took effect in the 2021-22 school year.
  • Dyslexia isSpecific Learning Disability. Students with learning disabilities are eligible for an Individualized Education Program (IEP) if they demonstrate a need for Specially Designed Instruction (SDI). SDI is key when a student isn’t keeping up with grade-level work and standard teaching strategies aren’t working.
  • The Revised Code of Washington (RCW 320.260) requires schools to support literacy with “multi-tiered” programming. That means schools provide different levels of help for all students who need it, regardless of special education eligibility.
  • Washington Office of Superintendent of Public Instruction (OSPI) has handouts about dyslexia screening and supports in WA Schools, some in multiple languages.
    [ ខ្មែរ (Khmer), 한국인(Korean), ਪੰਜਾਬੀ (Punjabi), Русский (Russian), Soomaali (Somali), Español (Spanish), Filipino/Tagalog, 中國人(Traditional Chinese), and Tiếng Việt (Vietnamese)] They are listed at the end of this article.

Full Article

A child who struggles to read can quickly fall behind in school. Nearly every learning area includes some reading, and children might become confused or frustrated when they don’t get help to make sense of their schoolwork. Behavior challenges can result, and sometimes schools and families struggle to understand why the student is having a hard time. Reading difficulties affect a student’s literacy. One definition of literacy is the ability to read, write, speak and listen in ways that let people communicate well. The Revised Code of Washington (RCW 320.260) requires schools to support literacy with “multi-tiered” programming to help with reading difficulties.

One cause of difficulty with reading is a specific learning disability called dyslexia. The state’s definition of dyslexia, adopted in 2018, is similar to a definition promoted by the International Dyslexia Association. According to Washington State’s definition:

“Dyslexia is a specific learning disorder that is neurological in origin and that is characterized by unexpected difficulties with accurate or fluent word recognition and by poor spelling and decoding abilities that are not consistent with the person’s intelligence, motivation, and sensory capabilities.”

Understood.org provides a video and additional materials to learn about dyslexia. Here’s their plain language definition: “Dyslexia is a common condition that makes it hard to work with language.”

Washington State requires dyslexia screenings (tests to find out if a student may have or be at risk for dyslexia) and interventions (help with reading). Lawmakers in 2018 passed Senate Bill 6162 to require schools to screen children from kindergarten through second grade using state-recommended literacy screening tools. The law took effect in 2021-22.

Since reading is used in almost every learning area, this law means schools have a duty to identify students who show signs of possible dyslexia while they are in their early reading years. The law also requires schools to provide “interventions” (help) to students identified through the screening.

OSPI offers a Fact Sheet about the screening in multiple languages. It includes the reason for the screening, who gives the screening, the skills that are screened, the process, and information about dyslexia.

What happens if the screening shows indicators (signs) of dyslexia?

The law requires the school to:

  • Notify the student’s family of the identified indicators and areas of weakness
  • Share with the family the school’s plan for multitiered systems of support to provide supports and interventions (help with reading)
  • The notice should include resources and information about dyslexia for the family’s use.
  • Update families regularly on the student’s progress

How can families tell if a student has trouble, or may have trouble with reading and language? Families can look for these signs in children who are toddlers and pre-kindergarten:

  • Trouble learning simple rhymes
  • Speech delays
  • following direction
  • Difficulty reading short words or leave them out
  • Trouble understanding the difference between left and right
    -Child Mind Institute Parent Guide to Dyslexia.

Screening happens in kindergarten through grade 2. If a student is already older than that, families can check for these signs of reading and language difficulty at home.

Understood.org states: “Dyslexia can also cause trouble with spelling, speaking, and writing. So, signs can show up in a few areas, not just in reading.” Understood.org lists these signs for students older than grade 2: Signs a Student May Have Dyslexia (handout)

The Washington Office of Superintendent of Public Instruction (OSPI) offers a Family and Caregiver Discussion Guide that may help when families are planning to speak to their child’s teacher or school administrators about their student’s reading difficulties, behavior, or other concerns.

What happens if the screening shows a student has signs of dyslexia, or if families or teachers notice signs and want a student to get help?

The school puts multi-tiered systems of support (MTSS) into action. “Multi-tiered systems” usually means beginning reading help as part of regular classroom reading instruction. If a student’s reading difficulties continue, the student may get more intensive instruction in smaller groups, and perhaps move up to intensive one-on-one time with a reading instructor. For any of these levels, the reading instruction must be “evidence-based” methods which means the methods have been tested and shown to be useful in helping with reading difficulties.

This guide for schools from OSPI has details about MTSS.

These more intensive levels of reading help may work very well. Not every reading difficulty is due to dyslexia, and not every person with dyslexia has the same level or type of reading difficulty.

At any point during these interventions, families or teachers may see a student is not making progress and ask that the student be evaluated for special education to see if the student qualifies for an Individualized Education Program (IEP). An IEP can provide Specially Designed Instruction (SDI), which means instruction will be based on the student’s unique needs and provide extra instructional time, assistive technology, and other supports.

The federal law that provides special education eligibility and funding is called the Individuals with Disabilities Education Act (IDEA). According to the IDEA, Dyslexia is a Specific Learning Disability. Specific Learning Disability is a category of eligibility for an Individualized Education Program (IEP). IDEA states that students have the right to a Free, Appropriate Public Education (FAPE), and the IEP is a key factor in a student having FAPE.

What types of help can a student get with reading and literacy?

Multi-tiered systems of support (MTSS) use instruction methods that have been proven to work for many students, starting with help in the general (regular) classroom. If a student doesn’t make progress that way, the student may join a smaller group for that gives each student more time with a teacher or reading specialist and even move on to one-to-one instruction with a reading specialist. These options are available to any student who shows signs of dyslexia or reading difficulty. OSPI offers Dyslexia Guidance (for schools): Implementing MTSS for Literacy with more specific information.


IEP: Students can get Specially Designed Instruction (SDI) based on their unique needs, such as particular areas of language and literacy where they have difficulties. Reading programs offered by the school can be included in an IEP. IEPs can include accommodations, which may include texts and instructions in audio format, text-to-speech/speech to text software, recording oral answers to assignment or test questions, access to distraction-free location for reading, allowing extra time to complete work or tests, and many more. Accommodations for Students with Dyslexia by the International Dyslexia Association lists many other options.

Section 504 Plan: Section 504 plans don’t include Specially Designed Instruction. They do include accommodations.

The National Center on Improving Literacy has information on when a Section 504 plan may make sense for a student with reading difficulties or dyslexia. They note that Section 504 Plans, which fall under Section 504 of the Rehabilitation Act of 1973, do not provide for Specially Designed Instruction. If a student’s reading has improved without an IEP by receiving multitiered systems of support, a Section 504 plan may offer Assistive Technology options, spelling checks, extended time on assignments and testing and other accommodations.

PAVE has articles and a video with more information about special education, IEPs, and Section 504 plans.

Interventions (help with reading) are schoolwide

Not all students who need reading support will need IEPs or a Section 504 Plan. The Revised Code of Washington (RCW 320.260) requires schools to support literacy through “evidence-based multi-tiered” programming. That means schools provide different levels of support for all students who need help, whether or not the student has an IEP or Section 504 Plan.

Some schools have reading programs funded by Title 1, which is part of a federal law called Every Student Succeeds Act (ESSA). Title 1 is funded to close opportunity gaps related to poverty and other measures.  

TIP: Ask about all options for reading support at your school. If a student with an IEP participates in a schoolwide reading program, then the IEP can list that program as part of the student’s services.

Dyslexia can be identified and helped without a diagnosis

Students do not need a diagnosis of dyslexia to be evaluated (tested) for special education eligibility. If the family has concerns, they can ask the school to evaluate the student. Requests should be in writing. PAVE provides a sample letter to help families request an educational evaluation.

Here’s a sentence to include in the evaluation request letter:

“I need my child tested for a specific learning disability. I believe there is a problem with reading that is disability related.”

TIP: When a student’s need for reading help qualifies for an IEP, there are important things that families need to know about how IEPs work, what the goals are for the student’s reading abilities, what type of reading help will be given, where the Specially Designed Instruction will take place, and what the parent’s and student’s roles and responsibilities are when their student has an IEP. These are the basics:

  • IEP Eligibility is based on a student’s needs
  • Specially Designed Instruction (SDI) serves the identified needs
  • The IEP tracks learning progress with specific goals in each area of SDI

What options do families have if they disagree with a school’s decisions about their student’s reading supports or other decisions?

  • If a student has not been screened for signs of dyslexia and the family has concerns, a first step is to meet with the student’s teacher. This article by the International Dyslexia Association offers specific steps families can take.
  • Families can request an evaluation to see if the student qualifies for an IEP or a Section 504 Plan.
  • If families disagree with the evaluation, they can request an Independent Educational Evaluation (IEE) from a provider outside the school. This article from PAVE gives steps and a sample letter to request and IEE: Evaluations Part 2: Next Steps if the School Says ‘No’
  • If the student has an IEP, this article gives specific steps to follow: Parents as Team Partners: Options When You Don’t Agree with the School.
  • For students with a Section 504 Plan, OSPI recommends:
    “The Section 504 coordinator in each district makes sure students with disabilities receive the accommodations they need and respond to allegations of discrimination based on disability. [Section 504 coordinators are members of a school’s Section 504 team which develops 504 Plans to accommodate a child’s needs]. A discussion with your school principal, or Section 504 coordinator at the school district, is often the best step to address your concerns or disagreements about Section 504 and work toward a solution. Share what happened and let the principal or coordinator know what they can do to help resolve the problem. If you cannot resolve the concern or disagreement this way, you can file a complaint.”

What else to know:

Keep in mind that families and schools don’t need to use the term dyslexia at all. They can talk about a student’s learning disability in reading, writing, or math in broader terms such as “Specific Learning Disability.” Under the Individuals with Disabilities Education Act (IDEA), dyslexia is a Specific Learning Disability that qualifies a student for special education.

Specific Learning Disability is defined by the Washington Administrative Code (WAC 392-172A-01035):
“Specific learning disability means a disorder in one or more of the basic psychological processes involved in understanding or in using language, spoken or written, that may manifest itself in the imperfect ability to listen, think, speak, read, write, spell, or to do mathematical calculations, including conditions such as perceptual disabilities, brain injury, minimal brain dysfunction, dyslexia, and developmental aphasia, that adversely affects a student’s educational performance.”

The state’s definition of learning disability excludes “learning problems that are primarily the result of visual, hearing, or motor disabilities, of intellectual disability, of emotional disturbance, or of environmental, cultural, or economic disadvantage.”

Here’s a handout on Accommodations and Modifications for Students with Dyslexia.

Resources

From PAVE:

Special Education is a Service, Not a Place
Student Rights, IEP, Section 504 and More (video)
Steps to Read, Understand, and Develop an Initial IEP
Supporting literacy: Text-to-Speech and IEP goal setting for students with learning disabilities
IEP Tips: Evaluation, Present Levels, SMART goals
Section 504: A Plan for Equity, Access and Accommodations
Evaluations Part 2: Next Steps if the School Says ‘No’
There’s more: just type “Special Education,” “IEP” or “504” in the search bar

From OSPI:

Family and Caregiver Discussion Guide with Educators and Schools
Understand Literacy Screening: Parents and Families
Available in ខ្មែរ (Khmer), 한국인(Korean), ਪੰਜਾਬੀ (Punjabi), Русский (Russian), Soomaali (Somali), Español (Spanish), Filipino/Tagalog, 中國人(Traditional Chinese), and Tiếng Việt (Vietnamese)
Best Practices for Supporting Grades 3 and Above
Section 504 & Students with Disabilities (web page)
Dyslexia Guidance (for schools): Implementing MTSS for Literacy

Dyslexia awareness is promoted by the National Center on Improving Literacy (NCIL), which provides resources designed to support families, teachers, and policy makers. On its website, the agency includes state-specific information, recommends screening tools and interventions and provides research data about early intervention.

The International Dyslexia Association has many detailed resources for families.

Supplemental Security Income (SSI)

A Brief Overview

  • Supplemental Security Income (SSI) is a monthly financial payment made to persons meeting specific eligibility requirements defined by the Social Security Administration (SSA).
  • A person may be eligible for SSI if they are aged, blind or disabled; have limited income and resources; and are a citizen or resident of the United States.
  • SSI is different from Social Security Disability Insurance (SSDI), which is an insurance that workers earn by paying into taxes on their earnings.
  • There is a special rule that allows dependent children of military families serving on overseas assignments to begin or continue receiving SSI benefits while outside of the United States.

Full Article

What Is SSI?

Supplemental Security Income (SSI) is a monthly financial benefit from the Social Security Administration (SSA) to people with limited income and resources who are age 65 or older, blind or disabled.  Blind or disabled children, as well as adults, can get SSI.

Eligibility Requirements

To be eligible for SSI, a person must meet specific eligibility criteria, including:

  • SSA definitions of aged, blind, or disabled
  • Having limited income and resources
  • Citizenship or residency status

Aged Determination

A person who is 65 years of age or older may qualify for SSI as “aged” if they also meet the financial determination.

Blind or Disabled Determination

SSA defines “blind” as seeing at a level of 20/200 or less in the better eye with glasses or contacts, or having a limited field of vision that can only see things at within a 20-degree angle or less in the better eye.  A person with a visual impairment that does not meet the criteria for blindness may still qualify for SSI based on the disability.

An adult or child may qualify for SSI as “disabled” if they have a physical or mental impairment that can be medically diagnosed through clinical and laboratory diagnostic techniques for anatomical, physiological, and psychological irregularities. The condition must cause marked and severe functional limitations, including emotional or learning challenges, that have lasted or are supposed to last for at least 12 months without interruption.

A person aged 18 or older must qualify as an adult, which includes proving they are unable to do substantial gainful activity.  Two (2) months before a child receiving SSI benefits turns 18, SSA will conduct a disability redetermination to determine whether the child meets the adult criteria to continue receiving SSI payments.

Eligibility for disability is determined by a team that includes a disability examiner and a medical or psychological consultant at a state agency known as the Disability Determination Service (DDS).  The team will review medical and financial documents, and determine eligibility based on the documents provided or request more documents be provided.

It is necessary to complete both disability and financial determinations when assessing eligibility. This is because SSI eligibility determination may be used in other programs within your state. 

Limited Income and Resources

SSI is a needs-based program. In order to receive SSI, the applicant must have limited income and resources.

If the applicant has too much income, their application will be denied, and they will be ineligible for SSI payments. A child does not earn income so part of their parent’s income will be attributed to the child. Different sources of income are treated differently and some have greater exclusions than others. When an adult applies on behalf of a child, the parent or guardian’s income is considered “deemed” income to the child. SSA will prorate the adult’s income among the family members to determine the amount applicable to the child.

If you received SSI in another state, be aware that some states have a higher income limit that allows an individual to receive SSI benefits despite being over the federally established income limits. Washington is not a state with a higher income limit and applications submitted in Washington state must meet the federal income limits.

Resources include both money (e.g., cash, bank accounts, Certificates of Deposit, stocks and bonds, investment accounts, life insurance) and property (e.g. vehicles, houses, real estate) that could be sold or converted to cash to pay for food or shelter. There are limits for how much an applicant may have in resources and maintain eligibility for SSI:

  • An individual may have up to $2,000
  • A couple may have up to $3,000
  • When applying on behalf of a child, an adult may have an additional $2,000 in resources and a portion of the adult’s resources may be applied to the child

Some resources are excluded from the eligibility determination, including:

  • Your house and the property you live on
  • The first vehicle (per household)
  • Most personal and household belongings
  • Property that can’t be used or sold for income
  • Up to $100,000 saved in an ABLE account
  • Properly distributed funds from a special needs trust (SNT) on behalf of the individual with a disability

Citizenship or Residency Status

SSI is only available to U.S. citizens and nations residing in the United States or the Northern Mariana Islands, and qualifying non-citizens with certain alien classifications granted by the Department of Homeland Security (DHS).  SSI benefits will stop if a person leaves the U.S. for a full calendar month or at least thirty (30) consecutive days, with the exception of dependent children of active duty servicemembers serving overseas.

Is SSI The Same As SSDI?

Supplemental Security Income (SSI) is not the same thing as Social Security Disability Insurance (SSDI).  SSI is a needs-based public assistance program for children and adults. The eligibility criteria include limited income and resources. SSI payments come from the general funds of the U.S. Treasury from tax revenues.

SSDI is an insurance that workers earn by paying into the Social Security through taxes on their work earnings. It is not affected by income or resources. In order to receive SSDI, the person must have worked and paid from their earnings into the Social Security trust funds in the U.S. Treasury.

How Do I Apply For SSI?

Family to Family Health Information Center (F2FHIC), a program of PAVE, provides technical assistance, information, and training to families of children, youth, and adults with special healthcare needs. The F2F website contains invaluable information and resources to help family members, self-advocates, and professionals navigate complex health systems and public benefits, including SSI. After reviewing F2F’s article about how to apply for SSI, if you have questions and would like to speak with an F2F team member, please submit a Help Request.

Special Consideration For Military Families Overseas

A special rule allows dependent children of military families serving on overseas assignments to begin or continue receiving SSI benefits while outside of the United States. The child must be:

  • is a U.S. citizen
  • living with a parent who is a member of the U.S. Armed Forces assigned to permanent duty ashore outside the United States
  • listed in the Command sponsorship orders.

If the child is receiving SSI benefits before moving overseas with the active duty service member, the benefits will continue based on the rate of the state in which they applied. If the child is born overseas or becomes eligible for SSI while overseas, you can apply for SSI by contacting the Federal Benefits Unit at the nearest U.S. Embassy or Consular Office, or by applying online. For additional support with your application, call SSA at 1-800-772-1213 (TTY 1-800-325-0778).

Once the child turns 18, they will no longer be eligible for SSI until they have been living within the United States for thirty (30) consecutive days and will be subject to the disability redetermination process.

When relocating on military orders overseas, you must report:

  • the servicemember’s expected report date to the duty station overseas
  • the child’s expected date of arrival at the overseas location
  • the mailing address at your new duty station
  • changes in military allowances at your new duty station

Additional Resources

Possible Accommodations for SAT and ACT Entrance Exams

The following information is part of the college readiness workbook. You can download this and other parts of this workbook for your personal use. Each document is fillable.

Extended time

  • Only if the disability causes them to work more slowly than others
  • May not be necessary for every section
  • If necessary for reading, will be provided for every section

Reading and seeing accommodations

  • Large-print test book
  • Braille with raised line drawings
  • Tactile graphics with a human reader or prerecorded audio
  • Assistive technology, such as text-to-speech

Recording responses

  • Large-print answer sheet
  • Recording answers accommodations
  • Computer for word processing for essay and short answer only
  • Record answers in their test books
  • Scribe to record both multiple-choice and essay or short answer

Use of four-function calculator

Assistive technology

  • Must request each device or software separately
  • Electronic magnifying machines
  • Text-to-speech (screen readers) and speech-to-text
  • Electronic/talking calculators

Breaks

  • Extended time (10 minutes)
  • Additional (5 minutes each)

Other accommodations

  • Signing or orally presenting instructors
  • Printed copy of verbal instructions
  • Colored overlays
  • Preferential seating
  • Wheelchair accessibility
  • School-based setting
  • Permission for food, drink, or medication
  • Permission to test blood sugar and access to testing supplies

COVID – 19 Updates:

  • Check the for updates related to COVID-19 and guidelines for participating in testing
  • Check the test center’s website for any additional or specific entry requirements, including College Board or local public health guidelines
  • If students don’t feel well on test day, they should contact Customer Service immediately to set a new test date.

Source:

Accommodations and English Learner Supports for Educators

Accommodations on College Board Exams

Disclaimer: All content is for informational purposes only. The information on this page is not a substitute for legal advice. When it comes to the law and policy matter, please consult an attorney or advocate on your child’s behalf.

How to Decide on a Post-Secondary Program

The following information is part of the college readiness workbook. You can download this and other parts of this workbook for your personal use. Each document is fillable.

Talk with your parents and/or guardians:

  • What are my abilities and strengths?
  • How does my disability affect my learning and ability to show what I know on tests?
  • What accommodations do I need to be successful?
  • What postsecondary education or training programs do my teachers and school counselors recommend for my areas of interest?

Talk together about your concerns with Student Support Services / Disability Office

  • A school’s location could deter your child, even if the program is perfect. Where is the school located and does that school setting (urban, suburban, or rural) meet your student’s needs? If they cannot live independently, what is the distance from home?
  • Does the student/instructor ratio ensure your student can access office hours with their instructor as needed?
  • Not all programs provide the same accommodations, and colleges do not make modifications to alter academic requirements.  Accommodations are what make it possible for your student to access the curriculum.  An inaccessible program would be a waste of time and money.
  • Are the housing options accessible for your student’s individual needs?
  •  Will they require someone to assist with self-help (like bathing), managing their medications and medical treatment, or nutrition and hygiene needs (like laundry, washing dishes, cooking)? 
  • Do they have a service or emotional support animal?

* High school counselors and teachers are resources for connecting with colleges and training programs. Many schools have “College Fairs.”

*This resource describes a typical process to ask for accommodations, and also lists key questions to ask of the Disability Office: How to Request Disability Supports in College

*You can also call postsecondary school admission officers to request brochures and fact sheets about the school and its programs. Schools almost always include information about their programs online.

Source: PACER’s National Parent Center on Transition and Employment – Preparing for Postsecondary Education

Disclaimer: All content is for informational purposes only. The information on this page is not a substitute for legal advice. When it comes to the law and policy matter, please consult an attorney or advocate on your child’s behalf.

How to Decide on a Post-Secondary Program Worksheet

The following information is part of the college readiness workbook. You can download this and other parts of this workbook for your personal use. Each document is fillable.

Fill in your answers to the questions.

Talk With Each Other

  • What are my abilities?
  • What are my strengths?
  • How does my disability affect my learning and ability to show what I know on tests?
  • What accommodations do I need to be successful?
  • What postsecondary education or training programs do my teachers and school counselors recommend for my areas of interest?

Talk Together About Your Concerns With Student Support Services

  • Where is the school located and does that school setting (urban, suburban, or rural) meet my needs?
  • If I cannot live independently, what is the distance from home?
  • Does the student/instructor ratio ensure I can access office hours with my instructor(s) as needed?

Not all programs provide the same accommodations, and colleges do not make modifications to alter academic requirements.

  1. Does the program offer the accommodations I need to be successful?
  2. Are the housing options accessible for my individual needs?

Do I require someone to assist with:

  1. Self-help (like bathing)?
  2. Managing my medications and medical treatments?
  3. Nutrition and hygiene needs (laundry, washing dishes, cooking?)
  4. Do I have a service animal?

Disclaimer: All content is for informational purposes only. The information on this page is not a substitute for legal advice. When it comes to the law and policy matter, please consult an attorney or advocate on your child’s behalf.

College Experience Terms: Non Degree Post-Secondary Transition Programs

The following information is part of the college readiness workbook. You can download this and other parts of this workbook for your personal use. Each document is fillable.

These are some terms for post-secondary education programs that are unique to those supporting students with intellectual disabilities.

Click on each term for more information.

Transition and postsecondary education program for students with intellectual disability (TPSID)

  • A federally funded model demonstration grant that allows schools to create and/or further develop their program.
  • Programs receiving the TPSID grant are more likely to have accommodations to support students with IDD because they’re literally being paid to create and expand their programs.
  • Students attending schools that are CTP approved can apply federal funding from the Department of Education to pay for non-degree programs.
  • Some programs may use the acronym “IPSE” to indicate they are focused on supporting students with IDD.

Inclusive post-secondary education (IPSE)

Sometimes used to refer to college programs for students with intellectual disability; also referred to as inclusive higher education programs.

Comprehensive transition program (CTP)

Approved by the U.S. Department of Education and eligible for federal student aid.

*If a student has an IEP and they intend to participate in a non-degree college program, their transition goals don’t have to be focused on a major to help them prepare for higher learning.

Disclaimer: All content is for informational purposes only. The information on this page is not a substitute for legal advice. When it comes to the law and policy matter, please consult an attorney or advocate on your child’s behalf.

Requesting Accommodations in Post-Secondary Education

The following information is part of the college readiness workbook. You can download this and other parts of this workbook for your personal use. Each document is fillable.

Post-secondary schools each set their own procedures and requirements to request accommodations. Here are some key points and tips on effective ways to request accommodations.

Accessibility is one important way a post-secondary school can show it is inclusive. Over the last few years, many colleges and universities have been highlighting accessibility and the services they offer students with disabilities. This may help a student to decide to apply to a particular school and make it easier to find out how to apply for accommodations at a school they have selected. (Check out the College Readiness Workbook created by PAVE to see resources for post-secondary program selection.)

To request accommodations:

  1. Begin by locating the campus disability services office on the school website. Type “disability” into the search bar.  Often, the first result will be the office that provides accommodation for students with disabilities.

Name of Office:                                                                Phone:      

  1. Call the office to make an appointment and request any forms you can complete beforehand and how to obtain them (such as by mail or downloading from the school website).  Make your appointment well before classes begin.  It may take 6-8 weeks to process your request, so start early to have accommodations in place by the time you need them.
  • Note that some accommodations, such as Braille or interpreter services, may take more time than others to arrange.
  • If you have an IEP, note that transition planning is mandatory beginning at age 16. Parts of a transition plan can include selecting a post-secondary program, deciding which accommodations you will need, and starting the request process on time.

Appointment Date:                                             Time:                           Contact:   

Requirements to document a disability range widely from one post-secondary program to another. It’s important to reach out to disability services to learn their specific requirements, and if possible, talk with other students who have experience with school services. DREAM (Disability Rights, Education, Activism, & Mentoring) Group has lists of student organizations to contact for this type of information.

Schools may ask for documentation from a medical or other therapeutic provider, or disability services may be able to use a student’s current IEP or 504 plan.

3. You will need to submit proof of a disability that impacts activities of daily living, to meet the requirements to provide accommodations under Section 504 of the Rehabilitation Act of 1973 and the Americans with Disabilities Act. The proof may be a form letter for a medical or therapeutic provider to fill out, or it may be notes from such a provider. It may be your most recent IEP or 504 plan. It must be specific to the condition or conditions for which accommodation is requested.

  • Be aware that a disability which is ‘mitigated’, that is, made less of an impairment by a device, an accommodation, or any other strategy for coping does not change a student’s rights under the ADA or Section 504.
  • The same is true for a condition that ‘comes and goes. For example, bipolar disorder, an autoimmune disorder, a gastrointestinal condition, or similar conditions in which symptoms are present at some times and not at others.
  • From a medical or therapeutic provider, schools often require that documentation must be in writing, must be current within three years, and include the following where appropriate:
    • A description of the student’s disability and how he/she is affected educationally by the presence of the disabling condition.
    • Identification of any tests or assessments administered to the student.
    • Suggestions for educational accommodations that will provide equal access to programs, services, and activities.

4. Documentation submitted to the college should provide clear evidence of need and demonstrate a history of use of the accommodations requested.  While a high school IEP or 504 plan does not “transfer” to the postsecondary program, the disability office may accept these plans as proof of disability or use them as guidance in determining appropriate accommodations.

Collect and check the documentation you need:

  • Most recent Individualized Education Program (IEP)
  • Most recent 504 plan, Accommodations Plan, or Service Plan
  • Most recent educational evaluations
  • Diagnosis and/or treatment plan
  • Medical or professional service providers notes, including suggested accommodations (colleges may have a form for this)
  • Make copies of the completed request forms for your home file
  • Other

Remember to check the school website for any disability-specific or need-specific documentation requirements.  For example, a student may be required to provide the results of a hearing assessment with expected progression or stability of the hearing loss, when requesting accommodations for a hearing disability.

5. Meet with the disability office staff to request and discuss accommodations.  Complete the How to Decide on a Post-Secondary Program worksheet to help you prepare for this meeting, including organizing your questions and concerns.

Write down any additional questions to help you remember during the meeting.

6. When you receive written notice of the decision regarding your eligibility for accommodations and the list of approved accommodations, make enough copies to share with your instructors and keep a copy with you in class, in the event of a substitute instructor.  Put the original in your home file for safekeeping.

Understand the limits of what the school is providing for assistive technology. For instance, many schools limit the loan of portable screen-readers to specified uses or time frames. Students may have to provide their own equipment or software outside those limits.

It is the student’s responsibility to give the eligibility notice with specific accommodations to each instructor every semester.

7. If accommodations become ineffective or you are not receiving approved accommodations, contact the disability services office immediately for assistance.

8. All accommodations are provided on a case-by-case basis.  If your request for accommodations is denied, contact the disability services office to determine the process for appeal and equitable resolution.

9. Once at college, this resources may help:
So, you’re in college, now what next?
College Readiness Workbook

Additional Resources:

So, you’re in college, now what next?
College Readiness Workbook (contains this article and many other helpful resources)

Sources:

How to Request Disability Supports in College

Tacoma Community College, Tacoma, WA Access Services

Disclaimer: All content is for informational purposes only. The information on this page is not a substitute for legal advice. When it comes to the law and policy matter, please consult an attorney or advocate on your child’s behalf.

Five Tips for a Smooth PCS

Military families are likely to switch schools more often than other families. This can require learning new rules and finding new resources. To help plan, here are four valuable tips for a smooth PCS (permanent change of station, which is the military language for “relocation”) with a special educational or medical needs child.

Tip 1: Organize your files.

Records are critical for planning and stability. Accessing records once you have left a duty station is far more complex than getting copies to take with you. Keeping track of your child’s records can make the transition to a new assignment far easier. With your child’s information and records organized and up to date, you can quickly find any new trends, needs, or program changes to consider when you PCS.

  • Save copies of evaluations, educational plans and programs, work samples, and behavior plans.
  • Monitor regression by comparing student work samples and grades before, during, and after your PCS.
  • Note what has worked to support your student through previous transitions and share these successes with the Individualized Family Service Plan (IFSP), Individualized Education Program (IEP), or Section 504 team.

If your student comes from a Department of Defense Education Activity (DoDEA) school, you may also have records and evaluations from a Student Support Team (SST) or Case Study Committee (CSC).

Tip 2: Know your resources.

When you are moving to a new place, it is important to know who can help you. Contact the School Liaison and Exceptional Family Member Program (EFMP) family service office as soon as possible. They have useful information about things that can support your child’s health, well-being, and quality of life, like assignment locations, schools, housing, and other essentials. In your new state, you can also reach out to the Family Voices program. They can help you apply for public benefits such as extra money (SSI) and healthcare (Medicaid). It is also good to know your child’s rights as a military student when switching schools between states. Learn about the protections under the Interstate Compact on Educational Opportunity for Military Children and use this Step-by-Step Checklist for resolving school issues with the Interstate Compact.

Tip 3: Keep open lines of communication.

Building strong communication links with your child’s teachers and other school officials can be critical. Remember to keep track of notes, emails, texts, and conversations. Always follow up on agreements with a note summarizing what was agreed to and any timelines. Building a solid relationship with your child’s teachers will help you address potential difficulties while they are minor issues and build trust among all team members. Discuss all the efforts that are helping your child. Keep communication lines open by responding promptly and respectfully, and reach out to school staff with positive feedback, as well as for problem-solving concerns.

Tip 4: Ask questions.

The Individualized Family Service Plan (IFSP) and Individualized Education Program (IEP), or Section 504 Accommodations Plan, are the heart of how your child will receive services, accommodations, and modifications tailored to their unique needs. Never feel that you shouldn’t ask questions. Terms can change from place to place, but what the service includes will follow strict guidelines set up through the Individuals with Disabilities Education Act (IDEA) and the Americans with Disabilities Act (ADA). Since you will be the single consistent factor in your child’s educational career, the more you know, the better you can collaborate and plan within the IEP or 504 teams. Locate and contact the Parent Training and Information (PTI) center in your new state to assist you in navigating this process. Students and families in Washington State may contact PAVE for one-on-one support, information, and training through our Get Help request form.

Tip 5: Include your student.

All people need the ability to understand and communicate their needs and wants. The ultimate goal for our children is to help them become self-advocates to the best extent they are capable and comfortable. Providing them with tools early and on an ongoing basis will help them plan for their future. In the long run, it will help them to be the driver of services they need and want.

These are just a few tips on navigating the special education and medical systems when PCS’ing. If you want to learn more, register for an upcoming STOMP workshop or webinar.

Prior Written Notice (PWN): An Important Document to Read and Understand  

A Brief Overview

  • Prior Written Notice (PWN) is a document that explains school district decisions about a student’s Individualized Education Program (IEP).  
  • Family members can request changes to the PWN if their concerns or positions are inaccurately described or left out of the PWN.
  • If a family caregiver files a special education complaint, the PWN may be among documents reviewed in an investigation.
  • PWN must be provided in the family’s native language.

Full Article

When family members and school staff meet to discuss a student’s services, certain things have to happen. One requirement is for the school to take notes and share those notes with the family within a reasonable amount of time (usually a few days) after the meeting. Those notes are formatted as a Prior Written Notice (PWN). This document is shared after a decision is made and prior to changes in a student’s program.

For example, if the IEP team meets and decides to change a student’s placement (where educational services are delivered), that decision is written down on the PWN. The PWN includes information about how the team made its decision and when the student will start receiving services in the new placement.

Parents can ask for their positions and reasons to be included in the PWN

During a meeting, family members can specifically ask for their position to be noted in the PWN. For example, if a school district staff member recommends changing a service and the parent does not agree to that change, the parent can say, “Please include in the Prior Written Notice that I do not agree to this change in service.” Family members can make sure their reasoning is included along with their position.

Family members also can request changes to the PWN after a meeting if they disagree with the wording or if their concerns or positions are left out. They might also provide something in writing and ask for it to be attached to the PWN for the record.

If the school takes an action that the family continues to disagree with, the family member might use a PWN among documents filed with a formal complaint. The PWN shows how disagreements were managed and documented through the IEP meeting process and whether family participation in decision-making was honored.

Washington State’s educational agency is the Office of Superintendent of Public Instruction (OSPI). On its website, OSPI guides families in what to expect in the PWN. According to OSPI, “The Prior Written Notice should document any disagreements with you and should clearly describe the reasons for this disagreement.”

PWN is an aspect of federal special education law, the Individuals with Disabilities Education Act (IDEA Sec.300.503(b)).

In accordance with IDEA, a PWN must include:

  • A description of the action proposed or refused by the school
  • An explanation of why the school proposes or refuses to take the action
  • A description of each evaluation procedure, assessment, record, or report the school used as a basis for their decision
  • A statement that the parents of a child with a disability have protection under the procedural safeguards and how the parents can obtain a copy of them
  • Sources for parents to contact to obtain assistance in understanding these provisions
  • A description of other options that the IEP Team considered and the reasons why those options were rejected
  • A description of other factors relevant to the school’s proposal or refusal

The school is required to provide PWN to the family when:

  • The school plans to evaluate your child
  • You’ve asked for your child to be evaluated and the school denies your request
  • The school wants to begin or change your child’s identification as a “child with a disability”
  • The school proposes or refuses a particular educational placement for your child
  • The school wants to change your child’s educational placement
  • The school wants to change aspects of the special education or related services that your child is receiving
  • The school refuses a request from you, as parents, with respect to the educational services your child is receiving

Like all formal educational documents, PWN must be provided in the family’s native language.

For more information about PWN and other special education requirements, refer to the Procedural Safeguards, available for download in multiple languages from OSPI’s website.

Tips to Help Parents Reinforce Positive Behaviors at Home

A Brief Overview

  • Positive Behavioral Interventions and Supports (PBIS) is a strategy schools use to teach children expected behavior. Read on for PBIS strategies families can use at home.
  • A key PBIS principle is that punishment fails to teach what to do instead. Adults can direct children and youth toward better choices and interrupt escalation cycles by consistently teaching expected, skillful behaviors.
  • The easiest way to change a behavior is to point out what a person does right. Remember this catchy phrase, “5-and-1 gets it done,” to ensure five positive interactions for each negative interaction.
  • PAVE provides a video with key information to help families and schools analyze a child’s behavior and develop a positive behavior support plan: Behavior and School: How to Participate in the FBA/BIP Process.
  • If you come up with some great behavior support strategies this summer, be sure to share them with the school in the fall!

Full Article

Changes in routine and seasonal transitions can cause emotional upheaval for families. A few strategies, described below, might help families keep things chill this summer and beyond.

These ideas come from education, where research has helped teachers see the benefits from using Positive Behavioral Interventions and Supports (PBIS). PBIS has been implemented in more than 26,000 U.S. schools. The PBIS framework has been shown to decrease disciplinary removals and improve student outcomes, including grades and graduation rates. When done well, PBIS provides positive social skills, communication strategies and “restorative justice,” (working it out instead of punishing) and may prevent 80-90 percent of problem behaviors.

Punishment does not teach

PBIS research highlights problems with punishments, which are called “aversive interventions.” Research shows that a punished child is likely to flip into an emotionally dysregulated state (fight/flight/freeze) that actually blocks learning. Chances are low that the child will know what to do next time because the punishment didn’t provide a learning opportunity.

PBIS teaches what to do instead—and how to do it. Adults who calmly direct a child toward a new way of problem-solving can interrupt or prevent an escalation and help the child make better and better choices moving forward.

Keep in mind that adults need to stay regulated to help children. PAVE provides resources to help adults work on their own self-control and support their children:

Behavior is a child’s attempt to communicate

Simple, consistent, predictable language is critical for teaching and reinforcing behavior, says Kelcey Schmitz, who works for the University of Washington School Mental Health Assessment, Research, and Training (SMART) Center.

“PBIS is a game changer for children and youth with behavior challenges and their teachers and caregivers,” Schmitz says. “In fact, everyone can benefit from PBIS. Behavior is a form of communication, and PBIS aims to reduce problem behavior by increasing appropriate behavior and ultimately improving quality of life for everyone. The same approaches used by schools to prevent problem behaviors and create positive, safe, consistent and predictable environments can be used by families at home.”

Schmitz, an MTSS training and technical assistance specialist, provides the following specific tips for creating a successful PBIS home environment.

Support Positive Behavior before there is a problem

PBIS is set up with three layers—called tiers—of support. The parent-child relationship is strengthened by loving and positive interactions at each tier.

Tier 1 support is about getting busy before there is a problem. Much like learning to wash hands to prevent getting sick, expected behavior is taught and modeled to prevent unexpected behaviors.  Parents can look at their own actions and choices and consider what children will see as examples of being respectful, responsible, and safe.

Tiers 2 and 3 are where adults provide more support for specific behaviors that are getting in the way of relationships or how the child or youth functions. In a school setting, Tier 2 is for students who need a social group or some extra teaching, practice, and reinforcement.

Tier 3 supports include a Functional Behavioral Assessment (FBA) to find out why the behavior is occurring, and an individualized Behavior Intervention Plan (BIP). PAVE provides a video: Behavior and School: How to Participate in the FBA/BIP Process.

Any student may access supports that include aspects of Social Emotional Learning at all three Tiers. At home, Tiers 2 and 3 naturally will be more blended and may include support from a community provider. Note that targeted interventions in Tiers 2-3 work best when Tier 1 is already well established.

Define, teach, and routinely acknowledge family expectations

  • Discuss how you want to live as a family and identify some “pillars” (important, building-block concepts) that represent what you value. Talk about what those pillars look and sound like in every-day routines. To help the family remember and be consistent, choose only 3-5 and create positive statements about them. Here are a few examples:
    • Speak in a respectful voice.
    • Be responsible for actions.
    • Be safe; keep hands, feet, and objects to self.
  • Identify a couple of “hot spots” to begin. Challenging behaviors often occur within routines.  Perhaps mornings or mealtimes create hot spots for the family. After discussing 1-2 ways to be respectful, responsible, and safe in the morning, teach what each looks like. Have fun with it! Set up “expectation stations” for practicing the plan and assign each family member one pillar to teach to the rest.
  • Behaviors that get attention get repeated. Notice when a child does the right thing and say something about each success: “I noticed you stopped to pick up your shoes in the hallway. Thanks for putting them away and keeping the walkway safe for others.” The easiest way to change a behavior is to point out what a person does right!
  • Remember this catchy phrase, “5-and-1 gets it done” to ensure five positive interactions for each negative interaction. When the expected behavior becomes routine, the reinforcement can fade away.

Create engaging and predictable routines

  • Children crave structure and routine. Adults may look forward to a relaxing evening or weekend, but kids often need regular activity and engagement. Consider that either the kids are busy, or the adults are busy managing bored kids!
  • Use visuals to create predictability. A visual schedule can display major routines of the day with pictures that are drawn, real photos or cut-outs from magazines. Create the schedule together, if possible.  Parents can ask a child to check the schedule – especially when moving from a preferred to non-preferred activity. It’s hard to argue with a picture!

Set the stage for positive behavior

  • Teach, pre-teach, and re-teach. Children need to learn behavior just like they learn colors and shapes. A quick reminder can help reinforce a developing skill: “When we get in the car, sit up, buckle up, and smile!”
  • Give transition warnings or cues to signal the end of one activity and the beginning of another: “In five minutes, it will be bath time.”
  • First/then statements set up a child for delayed gratification: “First take your bath; then we can play dolls.”
  • Focus on Go instead of Stop. Children often tune out words like NoDon’t and Stop and only hear the word that comes next, which is what an adult is trying to avoid. Tell a child what to do instead of what not to do: “Take your plate and put it in the sink.” Save Stop and No for dangerous circumstances that need a quick reaction.
  • Choices prevent power struggles: “Would you rather play for five more minutes or get in the bath now?”  “Feel free to choose the pink pajamas or the green ones.”

While these strategies may not eliminate all problem behaviors, they create consistency, predictability, and a more positive atmosphere. They teach new skills to help children get their needs met. The solid foundation will help even if challenging behaviors persist by creating a bedrock for additional layers of support.

Here are places to seek additional information:

Self-Care is Critical for Caregivers with Unique Challenges

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

Full Article

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

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

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

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

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

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

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

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

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

Connect with others

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

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

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

Here are additional places to find one another:

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

Get Enough Sleep

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

Move the Body

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

Here is information from the Mayo Clinic about exercise:

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

Be Mindful

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

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

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

Schedule Time

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

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

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

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

Seek Help

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

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

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

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

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