June 19 @ 12:00 pm – 2:00 pm PDT
In need of support, training and resources for your child’s IEP/504? Sherry Mashburn with PAVE is here to help.
Free
pti@wapave.org
Tag: WA
Sunnyside – Families United for a Better Future / Familias Unidas Para un Mejor Futuro
May 31 @ 8:00 am – 3:00 pm PDT
Families United for A Better Future
Familias Unidas Para Un Mejor Futuro
05/31/2025
No Childcare Provided
Doors open at 7:30am
No Habrá Cuidado de Niños
Las puertas abren a las 7:30 am
7:30-8:00am- Registration/Registro
8:00-9:00am-Welcome & Keynote/Bienvenido y Keynote
9:15am-First Session will begin/ La priemera sesión comienza
“The Families Unite for a Better Future Conference is a bilingual (English and Spanish) event created for families and others caring for children—including those with developmental and other disabilities. This engaging, community-centered conference brings together parents, caregivers, educators, and professionals to explore practical strategies, share experiences, and strengthen support systems for children and youth.”
“La Conferencia Familias Unidas por un Futuro Mejor es un evento bilingüe (inglés y español) creado para las familias y otras personas que cuidan a niños y niñas—including aquellos con discapacidades del desarrollo u otras discapacidades. Esta conferencia, atractiva y centrada en la comunidad, reúne a padres, cuidadores, educadores y profesionales para explorar estrategias prácticas, compartir experiencias y fortalecer los sistemas de apoyo para la infancia y la juventud.”
• Limited Interpretation/Interpretación limitada
Free
pti@wapave.org
Related Events
Procedural Safeguards: Student and Parent Rights in Special Education
A Brief Overview:
- Procedural safeguards are a legal requirement for schools and must be provided to parents once a year and during specific situations (e.g., initial referral, filing a complaint, change in placement due to disciplinary action).
- The Office of Superintendent of Public Instruction (OSPI) issued a statewide procedural safeguards notice, available for download in multiple languages, that outlines parental rights in special education.
- The Individuals with Disabilities Education Act (IDEA) requires that each state education agency provide ways to solve disagreements between parents and schools regarding a student’s special education. Procedural safeguards provide information on the formal and informal dispute resolution options available in Washington state.
- Specific protections are in place when disciplining students with disabilities, including requirements for conducting manifestation determinations and continuing education services during extended removals.
- Section 504 includes its own procedural safeguards to protect the rights of students with disabilities who are not eligible for special education under IDEA. The Section 504 Notice of Parent Rights is available for download in multiple languages from OSPI.
Full Article
The Procedural Safeguards are a written set of legal protections under the Individuals with Disabilities Education Act (IDEA) designed to ensure that students with special needs receive appropriate education. IDEA, implemented under Washington State law, requires schools to provide the parents/guardians of a student who is eligible for or referred for special education with a notice containing a full explanation of the rights available to them (WAC 392-172A-05015). Understanding these safeguards allows for effective advocacy in a child’s education and ensures their rights are protected throughout the special education process. They do not constitute legal representation or legal advice.
A copy of the procedural safeguards notice is downloadable in multiple languages from the Office of Superintendent of Public Instruction (OSPI). School districts must provide this notice once a year and during key times such as:
- At the initial referral for special education evaluation and at least once every year after.
- Upon receipt of the first special education complaint or due process hearing request filed by a parent or guardian in a school year.
- When a school decides to remove a student for more than 10 school days in a year through exclusionary discipline, and that removal constitutes a change in placement.
- Any time a parent, guardian, or student aged 18 or older requests them.
In addition to detailing when the procedural safeguards notice must be provided, the procedural safeguards contain information about several key areas, including:
Prior Written Notice
Schools must give prior written notice (PWN) before making any significant decisions about a student’s education, such as changes in identification, evaluation, or placement. This notice must include a detailed explanation of the decision and the reasons behind it. This document is shared after a decision is made and prior to changes in a student’s educational program.
Parental Consent
Schools must get written parental consent (permission) before conducting an initial evaluation or providing special education services for the first time. Parents can withdraw their consent at any time, but this doesn’t undo actions already taken. Once consent is given, the school has 35 school days to complete the evaluation. This consent is only for the evaluation, not for starting services. If the child is a ward of the state, consent might not be needed under certain conditions. When starting special education services under the initial IEP, the school must get consent again, and if refused, they can’t force it through mediation or legal action. Consent is also needed for reevaluations involving new tests, and schools must document their attempts to get it. However, consent isn’t needed to review existing data or give standard tests that all students take.
Independent Educational Evaluation
If a parent disagrees with the school’s evaluation of their child, they can ask for an independent educational evaluation (IEE) that the school district will pay for. The district must give the parent information on where to get an IEE and the rules it must follow. If the district does not agree to the IEE, they have 15 calendar days to either start a file a due process hearing request or agree to pay for the IEE. PAVE provides a downloadable sample Letter to Request an Independent Educational Evaluation.
Confidentiality of Information
Student educational records are confidential. IDEA provides parents and guardians the right to inspect and review their student’s educational records and request amendments if they believe they are inaccurate or misleading. When the child turns 18 years of age, these rights pass from the parent or guardian to the student. The Department of Education provides a website page called Protecting Student Privacy to share resources and technical assistance on topics related to the Family Educational Rights and Privacy Act (FERPA). The procedural safeguards explain terms about educational records from IDEA and FERPA to help parents understand their rights and protections.
Dispute Resolution
IDEA requires that each state education agency provide ways to solve disagreements between parents and schools regarding a student’s Individualized Education Program (IEP). In Washington State, there are both informal and formal options. When parents and school districts are unable to work through disagreements, the procedural safeguards outline the dispute resolution processes available. These options ensure that parents and schools can work towards a mutually agreeable solution while protecting the child’s right to a Free Appropriate Public Education (FAPE). The formal dispute resolution options available through OSPI are mediation, due process hearings, and state complaints.
Disciplinary Protections
When disciplining students eligible for special education, schools must follow specific rules to ensure fair treatment. If a student is removed for more than 10 consecutive school days or shows a pattern of removals totaling over 10 days in a school year, it’s considered a change of placement, and parents must be notified. After 10 days, the school must provide services to help the student continue their education. A manifestation determination must be conducted within 10 days to see if the behavior was related to the student’s disability. If it was, the IEP team must address the behavior and return the student to their original placement unless agreed otherwise. If not, the student can be disciplined like other students but must still receive educational services.
Also, schools must keep providing educational services to students with disabilities even if they are removed from their current school setting for disciplinary reasons. This helps the student keep making progress in their education. Parents and guardians have the right to join meetings about their child’s disciplinary actions and can ask for a due process hearing if they disagree with decisions. These safeguards ensure students with disabilities receive necessary support and fair treatment during disciplinary actions.
In special cases, such as carrying a weapon or using drugs at school, the student can be placed in an alternative setting for up to 45 days regardless of whether the behavior was related to the student’s disability.
Protections for Students Not Yet Eligible for Special Education
The procedural safeguards outline protections for students who have not yet been found eligible for special education but for whom the school should have known needed services. A school is considered to have this knowledge if a parent previously expressed concerns in writing, requested an evaluation, or if staff raised concerns about the student’s behavior to supervisory personnel. However, if the parent refused an evaluation or the child was evaluated and found ineligible, the school is not considered to have knowledge. In these cases, the student may be disciplined like other students, but if an evaluation is requested during this period, it must be expedited. If the student is found eligible, special education services must be provided.
Requirements for Placement in Private Schools
If parents believe the public school cannot provide FAPE and choose to place their child in a private school, there are steps to request reimbursement from the district. If the child previously received special education services, a court or administrative law judge (ALJ) may require the district to reimburse the cost of private school enrollment if it is determined that the district did not timely provide FAPE and that the private placement is appropriate, even if it does not meet state educational standards.
Reimbursement may be reduced or denied if the parent did not inform the IEP team of their rejection of the proposed placement during the most recent IEP meeting, failed to provide written notice to the district at least 10 business days before the removal, or did not make the child available for a district evaluation after prior written notice. However, reimbursement cannot be denied if the district prevented the notice or if the parent was unaware of their responsibility to provide it. The court or ALJ may also choose not to reduce reimbursement if the parents are not able to read or write in English, or if reducing or denying the reimbursement would cause serious emotional harm to the child.
This PAVE article, Navigating Special Education in Private School, explains the rights of students to receive equitable services in private schools, regardless of whether they are placed there by their parents or through an Individualized Education Program (IEP) decision.
Procedural Safeguards under Section 504
The procedural safeguards under Section 504 ensure that parents are informed of their rights before any evaluation or development of a 504 plan begins. These safeguards include the right to request a referral for evaluation, the formation of a 504 team to assess the student’s needs, and the requirement for parental consent before any evaluation or implementation of the plan. Parents must be provided with a copy of their rights at key points in the process. Additionally, the school must review and evaluate the 504 plan annually and re-evaluate the student’s eligibility at least every three years. Parents also have the right to file formal complaints if they believe the school is not following the 504 plan or if their child is experiencing discrimination or harassment. The Section 504 Notice of Parent Rights is available for download in multiple languages from OSPI.
Conclusion
Procedural safeguards are a requirement under the Individuals with Disabilities Education Act (IDEA) that ensure the rights of students with disabilities and their parents are protected throughout the special education process. By outlining the legal protections available, these safeguards empower parents to actively participate in their child’s educational planning and decision-making. Understanding these rights—from prior written notice and parental consent to confidentiality and dispute resolution—allows families to advocate effectively and collaborate with schools. Through adherence to these safeguards, schools and parents can work together to provide a Free Appropriate Public Education (FAPE) tailored to the unique needs of each child.
Additional Resources:
- OSPI’s Special Education webpage includes information about data collection, dispute resolution, funding information, guidance for families, legal procedures, program improvement initiatives, resource libraries, and support for secondary transition services.
- Special Education Parent & Community Liaison provides non-legal support by phone (360-725-6075) or through an online message portal, Ask OSPI web page.
- PAVE provides direct support to parents and guardians, youth with disabilities, adult self-advocates, and professionals. Complete the Get Help request form to be connected with individualized information, resources, and training.
When Parents and Schools Disagree: Navigating Special Education Disputes
A Brief Overview:
- The Individuals with Disabilities Education Act (IDEA) requires states to provide ways to resolve disagreements between parents and schools about a student’s Individualized Education Program (IEP).
- IEP facilitation is a voluntary and informal process where a neutral facilitator helps parents and schools resolve special education concerns collaboratively. This service is provided at no cost by Sound Options Group.
- Washington State Governor’s Office of the Education Ombuds (OEO) acts as a neutral guide to help parents and schools resolve disagreements about special education services, without providing legal advice or advocacy.
- OSPI provides three formal special education dispute resolution processes: mediation, special education community complaint, and due process hearing.
- If parents win a due process hearing or civil lawsuit, the school district might have to pay their attorneys’ fees. Conversely, if the complaint is deemed frivolous, parents might have to pay the school district’s fees.
- Protections are in place for children not yet identified as needing special education if disciplinary actions are taken.
- Every school district has a process for filing complaints related to harassment, intimidation, and bullying (HIB).
- Complaints about discrimination involving students with disabilities can be filed with OSPI or the U.S. Department of Education’s Office for Civil Rights (OCR). OCR will not handle cases already being addressed by another agency or school process unless the process is completed and the complaint is filed within 60 days.
Full Article
The Individuals with Disabilities Education Act (IDEA) requires that each state education agency provide ways to solve disagreements between parents and schools regarding a student’s Individualized Education Program (IEP). These options ensure that parents and schools can work towards a mutually agreeable solution while protecting the child’s right to a Free Appropriate Public Education (FAPE). The Office of Superintendent of Public Instruction (OSPI) offers both informal and formal dispute resolution processes.
These dispute resolution options provide structured processes for addressing and resolving disagreements, ensuring that the rights of students with special needs are upheld and that they receive the education and services to which they are entitled.
Informal Dispute Resolution
IEP facilitation is a voluntary and informal process where parents and school districts can address their special education concerns with the assistance of a trained, neutral facilitator. This process allows both parties to resolve issues collaboratively without the formality of mediation, and it is provided at no cost. OSPI contracts with Sound Options Group to offer free facilitation services from facilitators skilled in conflict resolution to help clarify disputes, set agendas, and work towards mutually agreeable solutions. Participation in facilitation is entirely optional for both families and districts.
The IEP facilitation process starts when either a family or a school district contacts the Sound Options Group to request help. A parent can request facilitation by contacting Sound Options Group directly by phone at 800-692-2540 or 206-842-2298 (Seattle) to request a mediation session. For Washington State relay service, dial 800-833-6388 (TDD) or 800-833-6384 (voice). Sound Options Group gathers initial information about the student and the needs of both parties, confirming that both the family and district agree to proceed with a facilitated IEP meeting. Once the IEP team sets a date for the 3–4-hour meeting, the facilitator is assigned. The facilitator helps everyone prepare by sharing documents, setting a mutually agreeable agenda, confirming the meeting details, and preparing both parties for the meeting. After the facilitated IEP meeting, a case worker from Sound Options Group and the facilitator review the session and decide if another meeting is needed. A successful facilitated IEP meeting will result in the development of an IEP that is tailored to meet the unique needs of the student.
Another option for informal dispute resolution is Washington State Governor’s Office of the Education Ombuds (OEO), which helps parents and schools resolve disagreements about special education services. Acting as a neutral and independent guide, the OEO helps parents and educators understand special education regulations, facilitates problem-solving, and advises on communication strategies to support a team approach to a student’s education. The OEO does not provide legal advice, act as an attorney, conduct investigations, or advocate for any party. OEO can be contacted through their online intake form or by phone (1-866-297-2597) with language interpretation available.
Formal Dispute Resolution
When informal methods are unsuccessful, families and schools can turn to formal dispute resolution processes outlined in the procedural safeguards and available through the special education system. A copy of the procedural safeguards notice for Washington is downloadable in multiple languages from the Office of Superintendent of Public Instruction (OSPI).
In Washington state, the formal dispute resolution options are:
1. Mediation
Mediation is a voluntary process provided at no cost to parents and schools. It is designed to resolve disputes related to the identification, evaluation, educational placement, and provision of FAPE. Both parties must agree to participate in mediation. Mediators are trained, impartial individuals knowledgeable about special education laws. OSPI contracts with Sound Options Group to provide trained, neutral mediators to facilitate effective communication and problem-solving between parents and school districts. This brochure, Mediation in Special Education, outlines the services provided by Sound Options Group. Discussions during mediation are confidential and cannot be used in due process hearings or civil proceedings. If an agreement is reached, it must be documented in writing and is legally binding. Parents can contact Sound Options Group directly to request mediation.
2. Special Education Complaint
Any individual or organization can file a special education complaint if they believe a school district or public agency has violated Part B of the Individuals with Disabilities Education Act (IDEA). Complaints must be filed within one year of the alleged violation. OSPI investigates the complaint, gathering information from both the parent or guardian and the school district. OSPI then issues a written decision addressing the complaint and any corrective actions required within 60 days of receiving the complaint. PAVE has developed this training video, Procedural Safeguards: How to File a Special Education Complaint, that walks through OSPI’s community complaint form with a pretend scenario.
3. Due Process Hearing
A due process hearing is a formal meeting to resolve disputes about a child’s identification, evaluation, placement, or FAPE. Either parents or the school district can request this hearing, but they must do so within two years of the issue, unless there was misrepresentation or withheld information. The request for a due process hearing must be in writing, signed, and include:
- the name, address, and contact information of the student (even if homeless)
- the name of the student’s school
- the school district responsible for the IEP
- a description of the issue, the facts, and related events
- your proposed resolution
The original request must be provided to the other party – the parent or guardian must send it to the superintendent of the student’s school district, and the school district must provide the original to the parent or the guardian of the student. In addition, a copy of the request must be sent to the Office of Administrative Hearings by mail (PO Box 42489, Olympia, WA 98504-2489), fax (206-587-5135), or email (oah.ospi@oah.wa.gov). The party asking for a due process hearing must have proof that they gave their request to the other party.
Before the hearing, the school district must meet with the parents and relevant IEP team members within 15 days to try to resolve the issue at a resolution session. OSPI provides a direct to download form, Information and Forms on Resolution Sessions. During the hearing, both sides present evidence and witnesses. Parents have the right to bring a lawyer, present evidence, and question witnesses. An administrative law judge (ALJ) makes a decision, which can be appealed in state or federal court. The decision is final unless it is appealed and the decision is overturned. If an agreement is reached before the hearing, it must be written down in a settlement agreement.
For disputes about disciplinary actions that change a student’s placement, expedited due process hearings are available. These hearings happen faster than regular ones to resolve urgent issues quickly.
Dispute Resolution Outside of Special Education
If parents disagree with the decision made in a due process hearing, they have the right to file a civil lawsuit in state or federal court. This must be done within a specific time period, often 90 days, after the due process hearing decision. The court will review the administrative record, hear additional evidence if necessary, and make a ruling (decision) in the case. The civil lawsuit is not a part of the special education dispute resolution process and there are additional costs associated. Please note that PAVE is not a legal services agency and cannot provide legal advice or representation. Washington State Office of Administrative Hearings has compiled this Legal Assistance List for Special Education Due Process Disputes.
If parents win a due process hearing or lawsuit, the school district might have to pay their attorneys’ fees. But if the court decides the complaint was frivolous or filed for the wrong reasons, parents might have to pay the school district’s attorneys’ fees.
Additional Considerations
If a child hasn’t been identified as needing special education but parents think they should be, there are protections if the child faces disciplinary actions. If the school knew the child might need special education services before the behavior happened, they must follow special education disciplinary procedures.
Every school district has a process for filing a formal complaint related to harassment, intimidation and bullying (HIB). PAVE has compiled information and resources to address bullying in this article, Bullying at School: Resources and the Rights of Students with Special Needs.
Complaint Processes Related to Discrimination
OSPI’s Complaints and Concerns About Discrimination page states, “Each student must have equal access to public education without discrimination.” This page contains Discrimination Dispute Resolution Information Sheets that contain definitions of key terms, information about the role of district Civil Rights Compliance Coordinators, and instructions and requirements for filing different types of complaints, available for download in different languages. Anyone can file a complaint about discrimination involving students with disabilities in a Washington public school, which is prohibited by Washington law (RCW 28A.642.010). Formal discrimination complaints must be written, and the complaint must contain:
- a description of the incident
- why it is allegedly discriminatory
- proposed corrective action the district or charter school can take
The formal discrimination complaint must be hand carried, mailed, faxed, or emailed to district superintendent, administrator of the charter school, or Civil Rights Coordinator. When a school district or charter school receives a complaint, it must investigate and respond within 30 days, unless an extension is agreed upon. The civil rights coordinator provides the complaint procedure and ensures a thorough investigation. If exceptional circumstances require more time, the school must notify the complainant in writing. The school can also resolve the complaint immediately if both parties agree. After the investigation, the school must respond in writing, summarizing the results, stating whether they complied with civil rights law, explaining appeal options, and detailing any corrective measures, which must be implemented within 30 days unless otherwise agreed.
Students with disabilities in public schools are also protected against discrimination by federal laws, including Section 504 of the Rehabilitation Act of 1973 and IDEA. The U.S. Department of Education’s Office for Civil Rights (OCR) accept complaints with overlapping civil rights concerns, such as racism and disability discrimination. An OCR complaint must be filed within 180 calendar days of the alleged discrimination. If the school district’s dispute resolution process is already handling the case through a means like what OCR would provide, OCR will not take on the case. Once the school district’s process is completed, individuals have 60 days to file their complaint with OCR, which will then decide whether to accept the result from the other process. OCR provides step-by-step instructions for filing a discrimination complaint.
Some families are anxious about questioning actions taken by the school. Parents have protections under the law. The Office for Civil Rights maintains specific guidelines that prohibit retaliation against people who assert their rights through a complaint process.
Additional Resources:
- OSPI’s Dispute Resolution page
- OSPI’s Students’ Rights Information Sheet: Discriminatory Harassment (available in multiple languages)
- OSPI’s Students’ Rights Information Sheet: Section 504 (available in multiple languages)
- PAVE’s Quick Start Your Advocacy in Two Steps (video)
- TeamChild civil legal services provided to youth (King, Pierce, Spokane, and Yakima counties only)
What is a Medical Home?
Brief Overview
- A “medical home” is a coordinated care team with a coordinated care plan for an individual’s medical needs.
- Medical homes can be very useful any time an individual has more than one provider and more than one provider prescribing medications or treatments. They are not only for highly complex medical conditions.
- Medical homes have many advantages, but it’s important to select providers with the interest and qualities to make it work
- This article offers tips and questions to ask yourself and your family’s providers to help decide if your child or other family member needs a medical home.
Medical Home: What is it? Does my child need one?
A medical home creates a coordinated team and a coordinated care plan around all your child’s medical needs. When a family or youth works with a physician or clinic to build (create) a medical home they all work together to “wrap around” the different medical providers and services needed for that person’s best health and wellbeing.
Medical homes don’t happen right away and don’t always look the same. Often a medical home is started and/or managed through a primary care or pediatric clinic, but if a person has complex medical needs, a specialist provider, practice, or clinic may be a useful “site” for the medical home.
Medical complexity, or a diagnosis that affects multiple systems in the body or has the potential to be life-threatening, adds its own set of challenges to a medical home. A medical home for an individual who is considered medically complex often has multiple specialists as well as therapists, medication management, and other systems such as school or early intervention. A good medical home can be a communication hub that helps this large multi-disciplinary team stay on the same page and not work at cross purposes.
No matter who provides coordination, a medical home supports your child and helps you as the parent or guardian with care coordination. Some families have medical homes “built” through a specialist’s office, some a primary care pediatrician, and others who are on Medicaid can have that coordination through a managed care patient care specialist.
There doesn’t need to be medical complexity to start discussing a medical home with a child’s team; there just needs to be more than one provider working with the child/youth or young adult, and with different medications prescribed by different providers. A medical home helps everyone be on the same page and you as a family to be part of the overall care plan.
When working with a provider to develop a medical home, remember that respect is a two-way street. Working with complex needs can be frustrating and scary and just because someone is a physician doesn’t mean they have all the answers.
Ask questions and let your providers know when you don’t understand a decision or if you disagree with their decision. This can be done respectfully and can help build a strong line of communication.
A medical home set up under this mutual respect with the family and patient at the center and as co-creators of care is at the heart of the medical home idea and an essential foundation for a medical home that works.
When choosing a provider to help you create a medical home, here are questions to ask yourself:
- Who is being valued and honored as the expert on the child or youth? Is it the family and the individual?
- Is this team family and patient-centered?
- Is there trust and respect that goes both ways?
- Are Culture, race, language, and religion being honored?
- Is an effort being made to understand not only the diagnosis but also its long-term impact on the patient and the family?
- Are all an individual’s healthcare needs included in the care plan, including well-child and required immunizations?
- Can you get help to find specialty care and community services when needed?
- Do you feel supported in managing the care plan as a caregiver, family, or individual?
- Is information provided to help understand choices and options in care, and is time set aside for discussion, with the family and/or patient being the person who decides?
What other qualities are important when choosing a provider or practice to create a medical home?
- It’s helpful if your provider has at least some experience with the diagnosed condition. The relationship of the provider with a patient and their family can be just as important.
- Is the provider a good listener? Open communications are important so decisions are developed together, and the provider recognizes that the family and their youth/young adult are the experts in developing the young person’s care.
- If your child is a transitioning youth an important consideration may be a provider or clinic’s connection to adult care and their willingness to work with the youth rather than the adult caregiver in developing care plans.
- Does a provider work well with the other members of a child’s care team? Are they willing to communicate and think proactively about sharing information? When a family with their child, youth, or young adult works with a provider in a medical home to make decisions together as a team, and information is shared with all members of the team, it provides a robust model for long-term working care plan development no matter who moves in and out of that family and individual’s medical home.
- A willingness to work with supports inside and outside the medical profession is also something to think about. A physician that is willing to work with a school and advocate for the child’s needs in a school environment goes a long way in setting up a strong IEP or 504 education plan.
Additional advantages to consider taking time to work with a provider to develop a medical home:
- It can help in the early identification of additional healthcare needs or potential complications, creating a proactive approach
- Provides consistent, ongoing primary care
- Continuing coordination with a broad range of other specialty services
- Medical home team’s support can help in finding more medical services when needed
- More cost-effective care overall
- A child or youth’s doctors will get to know their needs and individual circumstances better
- The integrated partnership approach creates better healthcare outcomes
- Information is easier to share across the different providers, with therapists, schools, and the patient and families themselves
- Strong relationship building is emphasized in care
- Fewer visits to the emergency room and hospital when problems are found more quickly
Family can be a constant in many children’s lives. They know the history of the child and they will be there in the future.
Bringing a trusted medical provider into that circle to help with medical coordination and care can increase a family’s ability to look beyond the need to juggle the many issues of caring for a child with special healthcare needs.
A medical home can spread the burden of coordination and decision-making between many hands and can keep everyone on the same page. This alone can be worth the extra work that you may face in the beginning.
Resources
Here are some useful online resources for creating and using a medical home:
American Academy of Pediatrics
Related
Tips to Organize Your Child’s Medical and School Documents
Where to Begin When A Student Needs Help
Where to Begin When A Student Needs Help
A toolkit to guide you through the special education process in Washington State
When a student has unmet needs and may need new or different school-based services, figuring out what to do next can feel confusing or overwhelming. PAVE provides this toolkit to support families in taking initial, critical steps. These guidelines apply regardless of where school happens.
Presenting our newest resource – the Where To Begin When a Student Needs Help. This user-friendly toolkit has been created to give you and your family the guidance you need when you are navigating the special education process in Washington State.
A user – friendly toolkit for families, Each section is detailed below:
- What’s the Big I.D.E.A?
- Pre-Enrollment : What You Need to Know Before Your Student Starts School
- Pathways to Support for School-Aged Children
- In What Areas Can a Student Be Evaluated? – Explanation is found on Evaluations Part 1: Where to Start When a Student Needs Special Help at School
- Washington Special Education Categories
- How to Request an Evaluation for an Individualized Education Program (IEP)
- Your Child has Met the Eligibility for an IEP – Preparing for the IEP Meeting
- Today Our Partnership Begins -Sample Letter to the IEP Team
- What you need to know About My Child
- Timeline of IEP Evaluation and Development – This information can be found on Evaluations Part 1: Where to Start When a Student Needs Special Help at School
- Steps to Read, Develop, and Understand an IEP
- IEP Tips and SMART Goals
- Advocacy Tips for Parents
- Communication Log
- Who’s Who on the IEP Team
- Military Families – How and Who to Tell When Your Child is Exceptional
- EFMP Enrollment Checklist
- Your Child’s Application for Supplemental Security Income (SSI)
- Your Child’s Application for Developmental Disabilities Administration (DDA)
- Resources to Help You Be the Best for Your Child – Support programs to help
- Resources to Help You Be the Best for Your Child – WA Respite Programs
- Abbreviation Cheat Sheet and Glossary of Terms
- Sample Letter to Request an IEP Evaluation
- Sample Letter to Request an IEP Meeting
- Sample Letter to Request a Functional Behavioral Assessment (FBA)
- Sample Letter to an Independent Educational Evaluation (IEE)
- Frequently Asked Questions
Where to Start Articles:
- Ensuring Safety and Inclusion: Adding an Emergency Action Plan to the IEP or 504 Plan
- Help for Military Families: Tips to Navigate Special Education Process in Washington State
- Section 504: A Plan for Equity, Access and Accommodations
- What Parents Need to Know when Disability Impacts Behavior and Discipline at School
- Military Interstate Children’s Compact Commission (MIC3), Part 3: How the Compact Protects Academic Progress toward Graduation
- Procedural Safeguards: Student and Parent Rights in Special Education
- Placement: Deciding Where a Student Spends the School Day
- When Parents and Schools Disagree: Navigating Special Education Disputes
- Ages 3-5 Transition Toolkit
- Where to Begin When A Student Needs Help
- Starting School: When and How to Enroll a Student in School
- Tips to Help Parents Plan for the Upcoming School Year
- Steps to Read, Understand, and Develop an Initial IEP
- Steps to Read, Develop, and Understand an IEP Worksheet
- What Happens During an Early Intervention Evaluation?
- Autism Spectrum Disorder: Information and Resources for Families
- 7 Factors Linked to Post – High School Success
- How to Request an Evaluation for an Individualized Education Program (IEP)
- Washington Special Education Categories
- Pathways to Support for School Aged Children
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.
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
Healthcare in Transition
Healthcare transition, like all other aspects of transitioning to adult care and services, can be difficult. However, if teenagers and families plan ahead for healthcare changes that occur when a child becomes an adult, things can go smoothly and be successful. Here are some resources and information for making the health care transition to adult care successful and seamless.
There are two main components for individuals transitioning from pediatric (children’s) to adult health care.
- New medical providers and systems, including changes in insurance.
- The young adult’s new responsibility to be in charge of their own health care.
Health Insurance and Providers
For individuals on Medicaid, Medicare, or private health insurance, eligibility, cost, and what services are covered may change.
Washington’s Medicaid option, Apple Health, has different financial requirements for adults than they do for minors. See the chart below for current income requirements for Apple health.
| Program | Single person | 2-person house-hold | 3-person household | 4-person household | 5-person household | 6-person household | 7-person household |
| Apple Health for Adults, age 19 through 64 years of age | $1,677 monthly | $2,268 monthly | $2,859 monthly | $3,450 monthly | $4,042 monthly | $4,633 monthly | $5,224 monthly |
- To apply or renew for Apple Health, go to the Health Plan Finder website. Even if an individual is not eligible for fully subsidized healthcare, the Health Plan Finder can reveal some low-priced options.
- For young adults on their parents’ private insurance, they will have coverage under their parent’s plan until they are 26, at which time they will need to apply for their own health insurance. The Health Plan Finder can help you find affordable options, including Apple Health.
- For individuals under 65 who are receiving Medicare due to a disability, insurance should not change due to the transition to adulthood.
A person’s health insurance may limit the health care providers available. Once you and your family know what type of health insurance you will have, you can select from physicians and other health professionals who accept that insurance. Most medical practices either list what insurances they accept, or you can call the office and ask. Health care insurance plans may also send information on where to find a provider, or you may find it on their website.
Taking on Responsibility for Health Care and Decisions
Healthcare is just one of many new responsibilities that young people take on as they become adults. Parents can avoid overwhelming a teen with new obligations, beginning with giving younger teens options and increasing tasks to help them adapt to this change. There are several resources for families and youth to use in this transition:
- Family to Family has a youth-written curriculum about Transitioning to Adult Doctors for individuals with disabilities that can help teens start their medical transition journeys.
- Charting the LifeCourse™ was created by families to help individuals and families of all abilities and all ages develop a vision for a good life, including their health care.
- Got Transition is a comprehensive website about the transition to adult health care, with quizzes, FAQs, and timelines to make it easier to understand.
- The Center for Transition to Adult Health Care for Youth with Disabilities is a national health care transition resource center. The goal of the center is to empower youth and young adults with intellectual and developmental disabilities (ID/DD) ages 12-26 to direct their own transition from pediatric to adult care with no reduction in quality of care and no gaps in service.
Beyond these resources, the most useful are the young adults, whether you are the parent/caregiver or a transitioning individual. It’s important to recognize that lived experience gives knowledge even in a new situation. There is the knowledge of medical need that may not be in a chart, emotional or behavioral challenges, developing self-determination that supports transition, and other important things only you know. Next in line are the current medical providers and specialists. They not only have helped numerous other teens transition to adult healthcare, but they are a part of developing the care plan, a critical resource for transitioning to an unfamiliar doctor or clinic when a young adult may have complex care needs. Doctors’ office staff are also used to dealing with these issues and may have some good planning advice for families. Lastly, advice from families who have already helped a child transition to adult care can help to know what to do—and what not to do! Parent-to-Parent can match parents up with families who have already gone through such transitions with those who seek their knowledge and experience.
Including Health Considerations in the Transition Plan
Parents, Students, and everyone on the IEP team should think about how health and healthcare can affect a student’s goals for college, work and living on their own. PAVE has made a fillable form that you can download when starting to think about this area in transition.
What Will Happen When We’re Gone? Planning for the Future for Your Child with Disabilities, Part 1: Ages Birth to 12
Overview:
- Planning for your child’s future will involve different tasks at different stages in your child’s life. This article covers what you will need from ages Birth to 12. Part 2 covers the years from age 13 through adulthood.
- This article has information on:
- Legal and informative documents parents may want to create (wills, powers of attorney, letter of intent)
- Financial planning, including options which do not affect your child’s benefits.
- Supporting and protecting your minor child after your death or when you are unable to care for them.
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:
- Demonstrate/model the wanted behavior
- Provide many opportunities for practice
- 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
Back To School Checklist!
Late summer is the time to gather school supplies, find out what time the school bus will pick up and drop off, and prepare to find new classrooms and meet new teachers. Parents of students with disabilities have some additional things to check off the list to be ready for the year ahead. As August is National Immunization Month, we are adding updated immunizations and flu and covid boosters to the reminders. These are fully covered medical expenses whether you have insurance or not and can go a long way to keeping your child and your family healthy as we move into the fall and winter months. There are multiple events across our state where families can go to for immunizations.
Super important: As school begins, make sure you know what’s included in your child’s Individualized Education Program (IEP), Section 504 Plan, and/or Behavior Intervention Plan (BIP). For more, see PAVE’s article: Tips to Help Parents Plan for the Upcoming School Year.
If you are new to Washington State, perhaps because of military service, you also may want to review some basic information about how education and special education are structured and delivered here. PAVE provides an article: Help for Military Families: Tips to Navigate Special Education Process in Washington State.
Here’s a checklist to help you get organized:
- Create a one-pager about your child to share with school staff
- Include a picture
- List child’s talents and strengths—your bragging points
- Describe behavioral strategies that motivate your child
- Mention any needs related to allergy, diet, or sensory
- Highlight important accommodations, interventions, and supports from the 504 Plan, IEP, or BIP
- Make a list of questions for your next meeting to discuss the IEP, BIP, or 504 Plan
- Do you understand the goals and what skills your child is working on?
- Do the present levels of performance match your child’s current development?
- Do accommodations and modifications sound likely to work?
- Do you understand the target and replacement behaviors being tracked and taught by a Behavior Intervention Plan (BIP)?
- Will the child’s transportation needs be met?
- Mark your calendar for about a week before school starts to visit school and/or send an email to teachers, the IEP case manager, and/or your child’s counselor
- Share the one-pager you built!
- Ask school staff how they prefer to communicate—email, phone, a notebook sent back and forth between home and school?
- Get clear about what you want and need, and collaborate to arrange a communication plan that will work for everyone
- A communication plan between home and school can be listed as an accommodation on an IEP or 504 Plan; plan to ask for your communication plan to be written into the document at the next formal meeting
- Design a communication log book
- Can be a physical or digital notebook
- Plan to write notes every time you speak with someone about your child’s needs or services. Include the date, the person’s full name and title, and information about the discussion
- Log every communication, whether it happens in the hallway, on the phone, through text, via email, or something else
- After every communication, plan to send an email thanking the person for their input and reviewing what was discussed and any promised actions—now that conversation is “in writing”
- Print emails to include in your physical log book or copy/paste to include in a digital file
- Having everything in writing will help you confirm what did/didn’t happen as promised: “If it’s not written down, it didn’t happen.”
- Consider if you want to request more information about the credentials of teachers or providers working with your child. Here are some things you can ask about:
- Who is providing which services and supports?
- Who is designing the specially designed instruction (SDI)? (SDI helps a child make progress toward IEP goals)
- What training did these staff receive, or are there training needs for the district to consider?
- Ask the special education teacher or 504 case manager how you can share information about your child, such as a one-pager, with school team members. This includes paraprofessionals or aids and other members of the school team.
- Parents have important information that benefit all school team members. Ask who has access to your child’s IEP or 504 Plan and how you can support ensuring team members receive information
- Have thank you notes ready to write and share!
- Keep in mind that showing someone you appreciate their efforts can reinforce good work
- Celebrate your child’s return to school
- Do the bus dance on the first morning back to school!
- Be ready to welcome your child home with love and encouragement. You can ask questions and/or read notes from your child’s teachers that help your loved one reflect on their day and share about the new friends and helpers they met at school
Below is an infographic of the above information.
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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
- Benefits Through Supplemental Security Income (SSI): An explanation of how to apply, what documentation and information to provide, and how to appeal a denial.
- Disability Redetermination: What happens to Supplemental Security Income (SSI) when a child turns 18?
- Expedited Payment Options: Conditions and criteria that may be eligible for fast-track processes
- How to Apply for SSI for Your Child: A 6-step article that walks you through the process of applying for SSI benefits.
- Supplemental Security Income (SSI) for Children: What it is, who it is for, and how Parents/Caregivers can help.
- Your Right to Question the Decision Made on Your Claim (SSA Publication No. 05-10058, May 2022, English) Available in Spanish and other languages
Surrogate Parents Support Unaccompanied Students in Special Education
A Brief Overview
- Parent participation in IEP process is a protected right for students with disabilities. If a student doesn’t have a family caregiver or legal guardian to advocate in their behalf, a surrogate parent is assigned to fill that role.
- A surrogate parent is not paid and cannot be employed by the school system, or any other agency involved in the care or education of the child.
- The provision for a surrogate parent is part of federal special education law, the Individuals with Disabilities Education Act (IDEA Section 300.519).
Full Article
If a student eligible for special education services does not have a family caregiver, adoptive parent, or other legal guardian fulfilling the role of parent, then a surrogate parent is assigned to ensure the student’s rights are protected. The surrogate parent fulfills the family caregiver role on a student’s Individualized Education Program (IEP) team and advocates to ensure the student’s needs are met.
A surrogate parent is an individual appointed by the public agency (usually a school district) responsible for the student’s special education services. Schools are responsible to assign a surrogate parent within 30 days after recognizing the need. Note that a child who is a ward of the state may be assigned a surrogate parent by the judge overseeing their case.
If a private individual, such as a neighbor or friend, has explicit written permission from the student’s parent or guardian to care for the student, a surrogate parent is not required.
A student 18-21 is responsible for their own educational decision-making unless they have a guardian to exercise their legal rights. A school district is responsible to assign a surrogate parent for a student declared legally incompetent or if an adult student with a disability asks for a surrogate parent.
A surrogate parent is required for a minor student when the parent cannot be identified or located or if parental rights have been terminated. A student’s parents are considered to be unknown if their identity cannot be determined from a thorough review of the student’s educational and other agency records.
A student’s parents are considered unavailable if they cannot be located through reasonable effort that includes documented telephone calls, letters, certified letters with return receipts, visits to the parents’ last known address, or if a court order has terminated parental rights. A parent is also considered unavailable if unable to participate in the student’s education due to distance or incarceration.
If a parent is too ill to participate at a meeting, either in person or by phone, that parent has the option of giving another individual written permission to act for them.
An uncooperative or uninvolved parent is not the same as an unavailable one. A surrogate parent is not assigned because parents choose not to participate in their child’s education.
A child identified as an unaccompanied homeless youth by the McKinney-Vento Homeless Assistance Act is an example of a student who would be assigned a surrogate parent to support them within the special education system. Children with surrogate parents might live in foster homes, nursing homes, public or private group homes, state hospitals, or correctional facilities.
In some cases, a state agency has guardianship of a student with a disability: That student requires the assignment of a surrogate parent.
Foster parents need to be formally appointed by the school as surrogate parents if they do not have legal guardianship. Relatives without formal kinship rights also can be designated as surrogate parents within the special education process.
A surrogate parent is not paid and cannot be employed by the school system, or any other agency involved in the care or education of the child. However, an unaccompanied homeless youth may be supported by appropriate staff from an emergency shelter, street outreach team, or other agency temporarily until a surrogate parent with no conflict of interest is appointed.
A surrogate parent must have knowledge and skills that ensure adequate representation of the student. A community volunteer, guardian ad litem, or other invested adult might serve as a surrogate parent. The surrogate parent must commit to understanding the student’s strengths and needs and how the educational system is structured to support the student’s services. Ideally, the surrogate parent lives near the student and is a match for providing culturally appropriate help in the student’s language.
The surrogate parent represents the student in all matters relating to special education identification, evaluation, and placement and works to ensure that the student receives a Free Appropriate Public Education (FAPE) from their school-based services.
The provision for a surrogate parent is part of federal special education law, the Individuals with Disabilities Education Act (IDEA Section 300.519).
Washington’s Office of Superintendent of Public Instruction (OSPI) includes some downloadable resources about the surrogate parent in its Special Education Resource Library.
PAVE is here to help all caregivers, including surrogate parents. For direct assistance, click Get Help to complete an online Help Request Form.
Response to Intervention (RTI) – Support for Struggling Students
Brief overview
- Students struggle in school for different reasons.
- RTI is an acceptable way of identifying students with learning disabilities.
- RTI isn’t a specific program or type of teaching.
- RTI works on a tier system with three levels of intervention.
Full Article
Students struggle in school for different reasons. Response to Intervention (RTI) can help by combining high quality, culturally responsive instructions with assessments and interventions that are proven to work by evidence from research.
RTI was originally recognized in the 1970s as a system for helping students with potential learning problems early, instead of waiting until they fail. With the reauthorization of the Individuals with Disabilities Education Act (IDEA) in 2004, RTI was noted as an acceptable way to identify students with learning disabilities. RTI can help students who haven’t yet been identified as eligible for special education or those who struggle but don’t qualify for special education services.
At any time during the RTI process, parents or teachers can request an evaluation for special education services. The evaluation can determine whether a student qualifies for an Individualized Education Program (IEP) or accommodations through a Section 504 Plan. RTI does not replace a school’s responsibility to evaluate students who might qualify for special education services. See PAVE’s article on Child Find, a mandate of the Individuals with Disabilities Education Act (IDEA).
RTI’s goal is for schools to intervene before a student falls too far behind. RTI is not a specific program or type of teaching, but rather a proactive way to check in with a student to see how things are going. Data help school staff decide which types of targeted teaching would work best for the student. If a student’s progress is slow or stagnant, then teachers adjust based on the student’s needs.
RTI has three levels, or tiers, for intervention:
- In the general education classroom
- In a special education classroom, resource room, or small group
- For an individual student
RTI works best when parents are involved
Parents can monitor their child’s progress and participate in the process. Parents can talk to the school about which instructions or reinforcements are working and boost the benefit by being consistent with the same strategies at home.
As military families move from one location to another, they may notice that each school uses different techniques to implement RTI programs. Schools will format their programs to best fit the needs of their students by using a variety of tools to improve learning for all students. Keeping up with what’s happening at school might be challenging but can help the student find success.
RTI is part of a Multi-Tiered System of Supports (MTSS) framework. MTSS provides a method for intervention in academic and non-academic areas, including Social Emotional Learning or behavior support. MTSS is used to support adult students and professionals as well. In this video, a researcher from the American Institutes for Research, Rebecca Zumeta Edmonds, Ph.D., discusses differences between MTSS and RTI.
PAVE has an article that describes MTSS and how it can provide a larger framework for Positive Behavior Interventions and Supports (PBIS), when a child’s behavior becomes a barrier to learning.
For more information on RTI, MTSS, and PBIS:
Center on Response to Intervention
Response to Intervention (RTI)
What is the Difference Between RTI and MTSS?
Positive Behavioral Interventions & Supports (PBIS) in Schools
I want the kind with the people and the pictures
By John O’Brien
After a Difficult Start…
Institutionalized from age three to twenty-three in a place where “they treated us like animals”– Mike has composed a good life, taking many valued roles: husband, father, worker, home owner, friend, organizer, advocate, mentor, teacher, neighbor.[1] Anticipating the changes that come with aging, Mike requested funding for a person-centered plan from his case manager (a service option in his state). The case manager said that it was unnecessary for him to spend any of his budget on a plan because a new Federal Rule requires that Mike’s annual plan of care meeting be a person-centered plan. Mike, who has participated in many person-centered plans organized through self-advocacy, asked some questions about the required plan and concluded, “I still want the kind with the people and the pictures.”
Regulations that require a person-centered plan as a condition of receiving Medicaid Waiver funds introduce a distinction between Want-to-plans and Have-to-plans. Each can make a positive contribution; both must creatively respond to constraints. A good Want-to-plan supports discovery of possibilities and life direction and mobilizes a person’s allies at important moments in their lives. A good Have-to plan gives a person effective control of the Medicaid waiver funded assistance they rely on. Committed and skilled facilitators with the time necessary to prepare and follow-up make a difference to the impact of both kinds of plan. How well either process works for a person depends on conditions outside the planning process: the extent, diversity and resourcefulness of the person’s social network; the openness of the person’s community; the flexibility and responsiveness of providers of necessary assistance; the sufficiency of public funds for necessary assistance and the means for people to control those funds. Good plans will identify the current reality of these conditions and consider how to engage them.
Mike’s is a want-to-plan. At his initiative, he and his invited allies (the people) collaborate to create a customized process to address his desire to deal proactively with the new responsibilities and increasing impairments that show up with aging. Mike chose Michele, an experienced facilitator, to guide the process. Their agreement makes it clear that Michele is responsible for facilitating a process of change over time, not just a meeting.[1] A graphic record (the pictures), created by Alex, provides an energizing memory of what emerges, a way to track and update action plans, and a way to orient new people to Mike’s intentions.[2] Occasional check-ins and revisions guide continuing action. One-to-one meetings assist Mike in sorting through all the suggestions and offers of help he receives to assure a good fit with who he is. Mike will bring some the information generated by this work to inform the required annual person-centered support plan, but his Want-to-Plan does not substitute for it.
Mike’s experience unfolds under highly favorable conditions for any person-centered plan. He has a strong desire to assure his wife and himself the best possible old age. Reciprocity for decades of generous neighborliness, concern for co-workers and leadership in advocacy give him a diverse network to call on. He is not inhibited in asking for help when he needs it. The help he needs is largely with navigating the unfamiliar territory of selling and buying property and preparing wills and other necessary documents and demands no change in his current paid services. Hard work and careful management has accumulated equity in family home. Many Want-to-plans will need to include provision for strengthening or establishing the social and material conditions for moving toward a desirable future.
Want-to-plans can also originate in a person’s positive response to an invitation to join a process of organizational change. This sort of plan poses a challenge that an organization must stretch its capacities to meet.
Have-to-plans are a necessary step in determining expenditure of Medicaid funds on services to meet the assessed needs of eligible people. They are the final responsibility of system staff assigned to coordinate services. While the process can vary to accommodate a person’s preferences, the process and resulting plan must comply with detailed standards. The New York OPWDD Person Centered Planning Regulation Checklist enumerates 23 requirements, 21 of which track US Federal Regulations.[3]
Have-to-plans serve a worthy purpose. The rules set conditions for the person to direct the meeting, understand the results and assure that the person-centered service plan documents the person’s needs strengths, preferences, goals and appropriate services.
This checklist item, based on a Federal requirement, identifies the intended result of Have-to plans:
2‐5. The plan documents the necessary and appropriate services and supports that are based on the individual’s preferences and needs and which will assist the person to achieve his/her identified goals. [Complies with CFR 441.301©(2)(v)]
This form of words sets Have-to-plans in the context of publicly funded disability services. Offering increased influence on which available provider(s) will serve a person and how those services will be of assistance is a clear benefit of Have-to-plans when there is a real choice among providers with a capacity to individualize supports.
This standard also locates a tension that constrains Have-to-plans as two impulses struggle with each other within the same sentence. One impulse, energized by commitment to self direction and the development of people’s strengths, expresses the life a person wants to live and the supports that they prefer to live that life. The other, tied to the historical anomaly of funding US disability support as if it were a medical service, aims to select necessary and appropriate services that are clearly linked to professionally assessed need. State policy can bias the struggle toward one impulse or the other. In some states[1] the person centered plan is bracketed between an assessment of need that involves an extensive inventory of a person’s deficiencies and writing an Individualized Service Plan (ISP) that must demonstrate a direct connection between assessed need and specified services and avoid public funding of “wants” or “lifestyle choices”. Without the skillful facilitation of an intentional shift in perspective, a Have-to-plan will be primed by a focus on deficiencies and develop within unconscious boundaries set by judgements of what can realistically be funded.
A Want-to-plan can safeguard a Have-to-plan. A person and those who care can choose to create a space outside the world of disability services for conversation about a person’s identity, gifts and capacities and the circumstances that offer the best life chances. Often, as with Mike, some action will result from this conversation that requires no change in publicly funded services. When the sort of changes in services that require a Have-to-plan are necessary, a person and their allies have a foundation for negotiating what they need from publicly funded services.
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[1] See for example, NJ Division of Developmental Disabilities (March 2016). Supports Program Policies & Procedures Manual (Version 3.0).
[1] Other agreements might suit other circumstances. A different person might agree to fill the necessary follow up role.
[2] Denigrating graphic records has become a cliche criticism of person-centered planning (“people have colorful pictures on their walls but their lives are unchanged”). Lack of commitment or capacity for creative action seem to me more likely causes of inaction than a vivid record of people’s thinking does.
[3] http://www.opwdd.ny.gov/sites/default/files/documents/PCPChecklist.pdfThe 22nd standard, specific to New York, defines a person-centered planning process as a right and requires written notice of that right. The 23d assures that all relevant attachments are filed with the plan. The rule itself, Medicaid Program; State Plan Home and Community-Based Services, 5-Year Period for Waivers, Provider Payment
Reassignment, and Home and Community-Based Setting Requirements for Community First Choice (Section 1915(k) of the Act) and Home and Community-Based Services (HCBS) Waivers (Section 1915(c) of the Act), was published in the Federal Register on January 16, 2014.
[1] You can view Mike’s witness to growing up in an institution and a snapshot of his life today in this 2015 TV investigation into his state’s continuing operation of institutions: http://www.king5.com/news/local/ investigations/wash-decades-behind-in-serving-developmentally-disabled-1/48265785