Tag: family

Supplemental Security Income (SSI)

Posted on by Nicol Walsh

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

School to Adulthood: Transition Planning Toolkit for High School, Life, and Work

Posted on by Nicol Walsh
Download the School to Adulthood: Transition Planning Toolkit

Looking to the future can feel exciting, hopeful, confusing, overwhelming—or all emotions at once. For families supporting a young person with a disability, it’s never too soon to begin planning to ensure a smooth process from the teen years toward whatever happens next. This toolkit supports families as they organize this multiyear project.

For a visual map of the ages and stages of high school transition process, check out PAVE’s infographic: What’s Next? High School Transition Planning Timeline.

Learn the Words

A good place to begin is a Glossary of Key Terms for Life After High School Planning, which provides vocabulary building and an overview of topics relevant to this important phase of life. 

Pandemic Impacts

A student receiving special education services has a right to education through age 21, if needed, to meet requirements and achieve readiness. Some IEP teams may determine that because of COVID-19 a student who has not yet received a diploma needs to stay in school beyond 21 to access Recovery Services, a term developed by the Office of Superintendent of Public Instruction (OSPI) to help students recover learning losses related to the pandemic. Decisions about Recovery Services are made by IEP teams, which include parents and students.

OSPI provides a Family Information Session on Transition Recovery, available on YouTube from June 2, 2021. The presentation slides are also available online, and families may call OSPI at 360-725-6075 with questions about Transition Recovery Services.

Earning a Diploma

To earn a high-school diploma in Washington State, students must:

OSPI provides a two-page summary of graduation requirements to support families and students. Included is this statement: “Students who receive special education services under an Individualized Education Program (IEP), also have an IEP Transition Plan, which begins by the school year when a student turns 16 or sooner. The HSBP is required to align with their IEP Transition Plan to ensure a robust planning process toward post-high school goals.”

Various state agencies collaborated to provide a guidebook: Guidelines for Aligning High School & Beyond Plans (HSBP) and IEP Transition Plans.

The state’s 2019 legislature changed graduation requirements (HB 1599). Students may earn a Certificate of Academic Achievement (CAA) or a Certificate of Individual Achievement (CIA) to graduate. How a student earns a CIA is determined by their IEP team.

Students with disabilities seeking a diploma through General Educational Development (GED) testing may be eligible for testing accommodations. A website called passged.com lists a variety of disability conditions that might make a person eligible for testing supports.

Commencement Access

Regardless of when a diploma is earned, a student can participate in Commencement at the end of a traditional senior year, with peers, under a Washington provision called Kevin’s Law. Families may want to plan well in advance with school staff to consider how senior year events are accessible to youth with disabilities.

The Big Picture

The right to a Free Appropriate Public Education (FAPE) includes the right to school-based services that prepare a young person with a disability for adult life.

Here are links to a training video, infographic, and article:

Various state agencies collaborated to provide a downloadable guidebook: Guidelines for Aligning High School & Beyond Plans (HSBP) and IEP Transition Plans. Included are career-planning tools and linkages to current information about Graduation Pathways, which changed in 2019 when the Washington State Legislature passed House Bill (HB) 1599.

Student Self-Advocacy

As they move toward adulthood, many students benefit from opportunities to practice skills of self-advocacy and self-determination. One way to foster those skills is to encourage youth to get more involved in their own Individualized Education Programs (IEPs). To support that, PAVE provides this article: Attention Students: Lead your own IEP meetings and take charge of your future. Included is a handout that students might use to contribute to meeting agendas.

The RAISE Center (National Resources for Advocacy, Independence, Self-determination and Employment) provides a blog with transition related news, information, ideas and opinions. Topics in 2020-21 include how to “Be the Best You,” how issues of race and disability intersect with equity, and how “The Disability Agenda Could Bring Unity to A Fragmented Society,” by RAISE Center co-director Josie Badger, who is a person living with disability.

Student Rights after High School

An Individualized Education Program (IEP) ends when a student leaves secondary education. The protections of the Americans with Disabilities Act (ADA) and of Section 504 of the Rehabilitation Act of 1973 are ongoing throughout the lifespan.

These laws provide for appropriate accommodations in public programs and facilities. To support these disability protections, The IEP accommodations page or a Section 504 Plan can travel with a student into higher education, a vocational program, or work. Often a special services office at an institution for higher learning includes a staff member responsible for ensuring that disability rights are upheld. PAVE provides an article with general information about Section 504 rights that apply to all ages: Section 504: A Plan for Equity, Access and Accommodations.

Universal Design supports everyone

Asking for rights to be upheld is not asking for special favors. A person living with disability, Kyann Flint, wrote an article for PAVE to describe how Universal Design supports inclusion. Her article can provide inspiration for young people looking for examples of what is possible, now as ever: COVID-19 and Disability: Access to Work has Changed.

Agencies that can help

Washington State’s Division of Vocational Rehabilitation (DVR) provides services for high-school students engaged in transition planning as well as adults seeking employment. PAVE provides an article that describes Pre-Employment Transition Services (Pre-ETS) and more: Ready for Work: Vocational Rehabilitation Provides Guidance and Tools.

DVR’s website includes a section with information about Tribal Vocational Rehabilitation (TVR), which is available for people with tribal affiliations in some areas of the state. Each TVR program operates independently. Note that some TVR programs list service areas by county but that sovereign lands are not bound by county lines. Contact each agency for complete information about program access, service area, and eligibility.

Services for individuals who are deaf or hard of hearing are provided by Washington’s Center for Deaf and Hard of Hearing Youth (CDHY), which was formerly called the Center for Childhood Deafness and Hearing Loss (CDHL). This statewide resource supports all deaf and hard of hearing students in Washington, regardless of where they live or attend school.

Services for individuals who are blind or living with low vision are provided by Washington’s Department of Services for the Blind (DSB). Youth services, Pre-Employment Transition Services (Pre-ETS), Vocational Rehabilitation, Business Enterprise Program, and mobility and other independent-living skills are served by DSB.

The Developmental Disabilities Administration (DDA) also has a variety of school-to-work and waiver programs that support youth. PAVE provides a video to support families through the DDA eligibility process. An article provides further detail: How to Prepare for a DDA Assessment.

Not all youth with disabilities are able to access employment-related services through DVR, TVR, DSB, or DDA. A limited additional option is Goodwill, which provides access to a virtual learning library. Students can take classes at their own pace for skills development. Employment skills, workplace readiness, interviewing skills and more are part of the training materials. To request further information, call 253-573-6507, or send an email to: library@goodwillwa.org.

Graduation’s over: Why is school calling?

Schools are responsible to track the outcomes of their special education services. Here’s an article to help families get ready to talk about how things are going: The School Might Call to Ask About a Young Adult’s Experience After High School: Here’s Help to Prepare

Benefits Planning

A consideration for many families of youth with disabilities is whether lifelong benefits are needed. Applying for social security just past the young person’s 18th birthday creates a pathway toward a cash benefit and enables the young person to access Medicaid (public health insurance) and various programs that depend on Medicaid eligibility.

The Washington Initiative for Supported Employment (gowise.org) provides benefit planning information and resources through a program called BenefitU.

When a person 18 or older has a disability, family members may want to stay involved in helping them make decisions. Supported Decision Making (SDM) is the formal name for one legal option. Washington law (Chapter 11.130 in the Revised Code of Washington) includes Supported Decision Making as an option under the Uniform Guardianship, Conservatorship, and Other Protective Arrangements Act. The law changed in 2020 when the state passed Senate Bill 6287. The changes took effect Jan. 1, 2022. PAVE’s article about Supported Decision Making has more information about this and other options for families to support an adult with a disability.

Download the School to Adulthood: Transition Planning Toolkit

Possible Accommodations for SAT and ACT Entrance Exams

Posted on by Nicol Walsh

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

Download Possible Accommodations for SAT and ACT Entrance Exams

Extended time

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

Reading and seeing accommodations

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

Recording responses

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

Use of four-function calculator

Assistive technology

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

Breaks

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

Other accommodations

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

COVID – 19 Updates:

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

Source:

Accommodations and English Learner Supports for Educators

Accommodations on College Board Exams

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

How to Decide on a Post-Secondary Program

Posted on by Nicol Walsh

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

Download How to Decide on a Post-Secondary Program

Talk with your parents and/or guardians:

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

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

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

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

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

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

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

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

How to Decide on a Post-Secondary Program Worksheet

Posted on by Nicol Walsh

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

Download How to Decide on a Post-Secondary Program Worksheet

Fill in your answers to the questions.

Talk With Each Other

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

Talk Together About Your Concerns With Student Support Services

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

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

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

Do I require someone to assist with:

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

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

College Experience Terms: Non Degree Post-Secondary Transition Programs

Posted on by Nicol Walsh

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

Download College Experience Terms

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

Click on each term for more information.

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

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

Inclusive post-secondary education (IPSE)

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

Comprehensive transition program (CTP)

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

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

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

Requesting Accommodations in Post-Secondary Education

Posted on by Nicol Walsh

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

Download Requesting Accommodations in Post-Secondary Education

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

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

To request accommodations:

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

Name of Office:                                                                Phone:      

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

Appointment Date:                                             Time:                           Contact:   

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

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

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

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

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

Collect and check the documentation you need:

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

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

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

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

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

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

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

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

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

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

Additional Resources:

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

Sources:

How to Request Disability Supports in College

Tacoma Community College, Tacoma, WA Access Services

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

Five Tips for a Smooth PCS

Posted on by Nicol Walsh
Download the PCS Essential Contact Form

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

Tip 1: Organize your files.

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

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

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

Tip 2: Know your resources.

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

Tip 3: Keep open lines of communication.

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

Tip 4: Ask questions.

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

Tip 5: Include your student.

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

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

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

Posted on by Nicol Walsh

A Brief Overview

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

Full Article

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

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

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

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

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

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

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

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

In accordance with IDEA, a PWN must include:

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

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

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

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

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

Tips to Help Parents Reinforce Positive Behaviors at Home

Posted on by Nicol Walsh

A Brief Overview

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

Full Article

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

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

Punishment does not teach

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

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

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

Behavior is a child’s attempt to communicate

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

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

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

Support Positive Behavior before there is a problem

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

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

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

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

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

Define, teach, and routinely acknowledge family expectations

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

Create engaging and predictable routines

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

Set the stage for positive behavior

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

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

Here are places to seek additional information:

Self-Care is Critical for Caregivers with Unique Challenges

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

Full Article

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

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

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

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

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

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

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

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

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

Connect with others

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

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

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

Here are additional places to find one another:

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

Get Enough Sleep

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

Move the Body

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

Here is information from the Mayo Clinic about exercise:

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

Be Mindful

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

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

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

Schedule Time

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

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

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

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

Seek Help

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

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

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

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

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

Home for the Holidays: The Gift of Positive Behavior Support

Posted on by Nicol Walsh

A Brief Overview

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

Full Article

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

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

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

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

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

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

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

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

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

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

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

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

Here is an example:

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

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

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

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

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

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

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

Make a list and check it twice: Prevention is key

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

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

Respond quick as a wink: Reward replacement behavior

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

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

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

Here are steps to help teach replacement behaviors:

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

Praise a silent night

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

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

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

All is calm: Intervene at the first sign of trouble

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

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

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

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

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

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

Believe: Be a beacon for hope

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

Here are a few points to review:

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

Resources:

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

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

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

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

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

Quick Look: How to Prepare for a Virtual Meeting

Posted on by Nicol Walsh

Schools and families continue to meet virtually to discuss special education services during the closures related to the coronavirus pandemic. Here are tips to help family members prepare for remote meetings to discuss a student’s Individualized Education Program (IEP), a Section 504 Plan, evaluation for special education services or something else related to a special education student’s needs and learning program.

For more comprehensive information, see PAVE’s article, “IEP on Pause? How to Support Continuous Learning with School Buildings Closed.”

  • Determine a regular communication plan with the school. That might include email, telephone, text, web-based meetings, U.S. mail, packet delivery by school bus…  whatever works for regularly checking in.   
  • Family caregivers can request meetings. PAVE provides a template to formalize the request: Sample Letter to Request an IEP Meeting. Included with the letter template is detail about who is required to attend IEP meetings, and those requirements have not changed.
  • The Special Education Continuous Learning Plan is provided by the Office of Superintendent of Public Instruction (OSPI) to support but not replace the IEP during the national crisis caused by the coronavirus pandemic. Included in the form is a sample meeting agenda.
  • Consider confidentiality and privacy issues. Ask school staff to describe how privacy and confidentiality are protected through a suggested meeting platform, and make sure to have any passwords or PINs ready to use when you log in or call into a meeting.
  • Before a meeting, ask to sign any necessary paperwork or releases to have special education records sent electronically via email. Special education records can include meeting notifications, IEP or Section 504 documents, assessments, progress reports, Prior Written Notices that describe meetings and planned actions, or other materials that contribute to the program review and goals.  
  • Review records before the meeting and write down questions to ask during the meeting. PAVE provides a Parent Handout Form or, for self-advocates, a Student Handout Form, that can help organize concerns and questions. Another version of a Parent Input Form is provided by the Washington Office of Superintendent of Public Instruction (OSPI).
  • Carefully review goals, services, accommodations, modifications and consider how they might apply or need to be adjusted for current circumstances. Think creatively and prepare to collaborate and request expertise from school staff. Pay special attention to the present levels of academic achievement and functional performance. These present levels statements, within the first pages of the IEP document, describe how the student is doing and where there are challenges. Wrightslaw.com provides tools specifically to support parents in reviewing IEP present levels in preparation for a meeting during COVID-19.
  • Consider whether the student will attend the meeting. A student who is 14 or older is invited as part of the state’s Pathways to Graduation planning. PAVE provides an article: Attention Students: Lead your own IEP meetings and take charge of your future.
  • Communicate early—before the scheduled meeting—to request updates about progress, a student’s present levels of performance, or other concerns. If family caregivers build a handout for the meeting, that can be submitted ahead of time to ensure that this information is part of the agenda.
  • Family members can request a practice session to test the technology. Part of that training might include practice sharing the screen to make sure everyone will be able to view important documents during the formal meeting.
  • As with in-person meetings, family participants can invite support people. A friend or family member might be able to attend and take notes.
  • Refer to parent and/or student input forms to stay on topic and ensure that all concerns and questions are addressed.
  • When the meeting ends, family participants can ask for a copy of the program recommendations page.
  • After the IEP meeting, the school provides a Prior Written Notice (PWN) to the family participants to review meeting notes and any decisions, agreements, or disagreements. Ask when and how the PWN will be provided. Family participants have the right to request amendments or corrections to the PWN.
  • Be sure to leave with a clear action plan. Here are key questions to ask and record:
    • What will happen?
    • Who is responsible?
    • When will the actions happen? Are there timelines?
    • How will we communicate for follow through?
  • As with any meeting, any unresolved issues can be addressed in a follow-up meeting.

To learn more, PAVE provides a six-minute overview of IEP basics and a 30-minute training video about special education.   

Census 2020: Submit Your Response to Ensure Schools and Other Programs get Funding

Posted on by Nicol Walsh

The United States Census collects information to figure out how to spend about $1.5 trillion each year. Communities get federal money based on how many people of various ages live there. Money for special education, foster care, children’s health insurance and many other programs is distributed more fairly when the federal government has an accurate count of people living in each community.

The federal government counts citizens only every 10 years, so communities where people are undercounted might not get the money they need for a full decade. According to Count All Kids, the 2010 U.S. Census missed more than 10 percent of children under age 5. Count All Kids provides materials to help families understand why submitting accurate information is important. If a two-year-old isn’t included as a household member, for example, the community will have less money for education, childcare, and other services until that child has a chance to be counted at age 12.

A one-minute YouTube video with Sesame Street characters is a family-friendly way to learn more about Census 2020. For another musical take on why an accurate count is critical, talk show host and comedienne Samantha Bee shared a song about the Census by Baltimore rapper TT The Artist on her stay-home version of the show, Full Frontal.

The National Association for Family, School and Community Engagement (NAFSCE) provides materials to help families understand how to complete their census forms and why their accurate response is important. A recorded webinar from March 30, 2020, is available on YouTube: The 2020 Census and Equity – Why It Matters and How You Can Help.

Minority communities suffer when children aren’t counted

NAFSCE notes that poor and racial minority communities tend to suffer most when families don’t count their children: “Young children had by far the highest net undercount of any age group in the 2010 census. Black and Hispanic children are missed at more than two times the rate of white children.”

Homes received Census forms in the mail this winter/early spring. The questions take about 10 minutes to answer and the responses can be filed online, by phone, or by mailing in a paper form.

In Washington, the Office of Financial Management oversees a Complete Count Committee to help the public access and submit forms to include all members of their family. The state’s website includes a map of legislative districts that are drawn based on Census data and other information about programs that are impacted by the numbers:

“For every 100 households missed in the 2020 Census count, the state could lose up to $5.8 million, which would affect the ability to support children, veterans, senior citizens and middle- and low-income families adequately. An accurate count of Washington’s communities will ensure the fair distribution of taxpayers’ funds and political representation.”

Household information is confidential

On pages that address questions and concerns of families, the Office of Financial Management includes information about confidentiality and privacy protections: 

“The Census Bureau collects data for statistical purposes only. It combines your responses with information from other households or businesses to produce statistics, which never identify your household, any person in your household, or your business. Your information is confidential. By law, the Census Bureau will never identify you individually.

“Title 13 of the U.S. Code protects the confidentiality of all your information and violating this law is a crime with severe penalties. In addition, other federal laws, including the Confidential Statistical Efficiency Act and the Privacy Act, reinforce these protections. The penalty for unlawful disclosure is a fine of up to $250,000 or imprisonment of up to 5 years, or both.”

Beware of scams: Use official forms from snail mail

CensusOutreach.org provides a timeline for 2020 reporting. Families receive notifications by mail and are encouraged to submit response by the end of April. The last day for households to self-respond online, by phone or by mail is July 31, 2020. The Census Bureau will not email or text people for the 2020 Census and encourages people to beware of scams: Do not open or respond to any links sent by email or text that reference the Census. Official forms come through U.S. Mail.

Hard to Count Maps 2020 provides an interactive map that shows how various states are doing in collecting census data and provides state-by-state details about return rates and where to go for further information. If online access is difficult, Washington families can contact the state Office of Financial Management by phone for more information: 360-902-0584.

Families and Youth Have a Voice on Mental Health Matters Through FYSPRT

Posted on by Nicol Walsh

A Brief Overview

  • FYSPRT (pronounced fiss-burt) is a hard acronym to learn, but it’s worth the effort for families and young people who want to talk about improving mental healthcare systems.
  • Here’s what FYSPRT means: Family members, Youth and System Partners (professionals) get together at a “Round Table” (meaning everyone has an equal voice) to talk about issues related to emotional distress, mental illness and/or substance-use disorder. All participants share ideas about what helps and what could make things better.
  • The Washington State Health Care Authority (HCA) provides a map of the 10 FYSPRT regions and includes contact information for local leaders and a schedule of where/when meetings are held.
  • FYSPRT began after a class-action lawsuit against the state, TR v Dreyfus. The litigation resulted in development of the state’s out-patient mental-health services program for youth—Wraparound with Intensive Services (WISe).
  • FYSPRT is a place where families provide feedback about WISe, but all community members are welcome—regardless of age or agency affiliation.
  • Some regional FYSPRTs sponsor separate meetings and social events for youth.

Full Article

Parents and young people who struggle with emotional distress, mental illness and/or substance-use disorder can feel powerless to affect change in a complicated medical system. The Family, Youth and System Partner Round Table (FYSPRT) provides a meeting space for family members and professionals to talk about what’s working and what isn’t working in mental healthcare. The groups also provide informal networking and can provide ways for families to meet up and support one another under challenging circumstances.

The state sponsors 10 FYSPRT groups to serve every county: A list of the groups and which counties they serve is included at the end of this article. Each group reports to a statewide FYSPRT, which provides information to state government to influence policy. The Washington State Health Care Authority (HCA) provides a map of the FYSPRT regions and includes contact information for local leaders and a schedule of where/when meetings are held.

FYSPRT began as part of a class-action lawsuit against the state, referred to as TR v Dreyfus. The litigation began in 2009, and settlements were mediated in 2012-13. The federal court found that Washington wasn’t providing adequate mental-health services to youth and required that the state start delivering intensive community-based mental-health treatment. The state responded by developing the Wraparound with Intensive Services (WISe) program for youth under 21 who are eligible for Medicaid. WISe teams provide a wide range of therapies and supports with a goal to keep the young person out of the hospital, which costs more and can be traumatizing.

Young people under 18 who need residential care are referred to the Children’s Long-Term Inpatient program: PAVE’s website provides an article about CLIP.

To provide accountability for the delivery of WISe services, the state created FYSPRT as a forum for families to provide feedback about how the program is working. The mission is to provide an equal platform for everyone within the community to strengthen resources and create new approaches to address behavioral needs of children and youth.

 

FYSPRT provides a space where youth impacted by behavioral health issues and their family members can share ideas about what works well and what would work better. The FYSPRT model is based on the belief that everyone’s unique perspective is equally important, and everyone is invited. For many parents and youth, FYSPRT becomes a place to bond and connect to support one another. Some regional FYSPRTs include separate meetings for youth, and those groups can become a key social outlet.

 

FYSPRT meetings are open to all interested community members. Each community has unique participants depending on what agencies work in the cities and towns within the region.

Staff who serve families through WISe are key participants. Other attendees are case managers from the state’s Medicaid-provider agencies, behavioral health counselors, foster-care workers, staff of homeless programs and staff and volunteers from affiliates of the National Alliance on Mental Illness (NAMI). Other participants are leaders of support groups for youth in recovery or working with issues related to gender identity or sexuality. PAVE staff are regular attendees in many regions, and PAVE manages the Salish FYSPRT program.

Every area of the state of Washington has its own FYSPRT, overseen by the Health Care Authority.  Each of the ten FYSPRT regions is comprised of a single county or up to eight adjoining counties. In order to create greater participation from the general public, transportation and childcare stipends are available for families and youth in most areas. Some groups provide free meals for everyone and/or gift card incentives for the families and young people who attend.

Here are links to each regional FYSPRT’s website and a list of the counties each represents:

Great Rivers Regional FYSPRT – Cowlitz, Grays Harbor, Lewis, Pacific

HI-FYVE – Pierce

King County’s Family Youth Council – King

North Central Washington FYSPRT – Chelan, Douglas, Grant, Okanogan

North Sound Youth and Family Coalition – Island, San Juan, Snohomish, Skagit, Whatcom

Northeast FYSPRT – Adams, Ferry, Lincoln, Pend Oreille, Spokane, Stevens

Salish FYSPRT – Clallam, Jefferson, Kitsap

Southeast FYSPRT – Asotin, Benton, Columbia, Franklin, Garfield, Kittitas, Whitman, Yakima

Southwest FYSPRT – Clark, Klickitat, Skamania

System of Care Partnership – Mason, Thurston