Tag: special needs

Starting School: When and How to Enroll a Student in School

Posted on by Nicol Walsh

A Brief Overview

  • Compulsory attendance begins at 8 years of age and continues until the age of 18 unless the student qualifies for certain exceptions.
  • Infants and toddlers receiving early intervention services may be eligible to start preschool as early as 3 years old to continue receiving specialized instruction and related services.
  • A student aged 4 years old by August 31 may be screened for Transition to Kindergarten (TK), a state program designed for students who need additional support to be successful in kindergarten the following year.
  • A child must have turned 5 years old by August 31 to enroll in kindergarten, and 6 years old to enroll in first grade.
  • When registering your student for school, contact the school to find out what documents are required in addition to those listed in this article.
  • Students with a condition that may require medication or treatment

Full Article

If your child has never enrolled in school, back to school season can be a confusing time. This article answers frequently asked questions about school entrance age, compulsory education, and the enrollment process.  Note that “enrollment” and “registration” are used interchangeably regarding the steps leading up to a student starting school and within the OSPI (Office of Superintendent of Public Instruction) website.

At what age are children required to attend school?

Federal law protects the rights of children and youth to receive a publicly funded education. This is called compulsory education, or compulsory attendance. The age at which a child must begin school varies by state. In Washington state, children must begin attending school full-time at the age of 8 and continue attending regularly until the age of 18 (RCW 28A.225.010).

There are some exceptions to compulsory attendance, including if a child is –

  • enrolled in a private school, extension program, or residential school operated by the Department of Social and Health Services (DSHS) or the Department of Children, Youth, and Families (DCYF).
  • enrolled in home-based instruction that meets State supervision requirements.
  • excused by the school district superintendent for physical or mental incapacity.
  • incarcerated in an adult correctional facility.
  • temporarily excused upon the request of the parents when the excused absences meet additional requirements under Washington state law (RCW 28A.225.010).

Compulsory attendance is required in Washington until the age of 18, unless the student is 16 years or older and meets additional criteria for emancipation, graduation, or certification (RCW 28A.225.010).

At what age can a student begin attending school?

Students with special needs or disabilities may qualify for early education programs. An infant or toddler with a disability or developmental delay receiving early intervention services may be eligible to start preschool between the ages of 3-5 to continue receiving specialized instruction and related services through the public school district until they reach the minimum enrollment age for kindergarten. Washington’s Transition to Kindergarten (TK) program screens 4-year-olds with a birthday by August 31st to identify those in need of additional preparation to be successful in kindergarten.

Parents may choose to enroll a child in kindergarten at 5 years old, if the birthday occurred before August 31st of the same year, but kindergarten is not required under compulsory education. Similarly, a child must be 6 years of age to enroll in first grade.

Families have the right to choose whether to enroll their students in school until the child turns 8 years old and compulsory attendance applies.

How do I enroll my student in school?

If this is the first time your child will attend this school, call the school and ask what you must bring with you to enroll your child and the best time to go to the school for enrollment. Consider that things will be busiest right before the school day starts, during lunch breaks, and as school is ending. Also find out if there is an on-site school nurse and the best time to reach that person.

A parent or legal guardian must go with the student to the school for registration with the required information and documents. According to the Office of Superintendent of Public Instruction (OSPI)’s Learning by Choice Guide, most schools require the following at a minimum:

  • Proof of age (e.g., birth certificate or passport).
  • Health history, including name, address, and phone number of child’s doctor and dentist.
  • Proof of residency (e.g., utility bill, tax statement).
  • Parent or guardian’s telephone numbers.
  • Child’s immunization records.

If your child has attended another school, also provide:

  • Withdrawal form or report card from the last school attended.
  • Expulsion statement.

Enrollment for Military-Connected Students

A Washington law passed in 2019 (HB 1210-S.SL, School Enrollment-Nonresident Children from Military Families) allows advance enrollment of children of active-duty service members with official military orders transferring or pending transfer into the state. This means that qualifying children must be conditionally enrolled in a specific school and program and registered for courses. The parent must provide proof of residence within fourteen days of the arrival date listed in the military orders before the school will finalize the enrollment. The address on the proof of residency may be a temporary on-base detailing facility; a purchased or leased residence, or a signed purchase and sale or lease agreement; or military housing, including privatized and off-base housing. The child will be conditionally enrolled and registered for courses.

Schools are responsible for the health and safety of students during all school-related activities. If a student has a condition that may require medication or treatment while at school, Washington state law (RCW 28A.210.320 and WAC 392-380) requires additional steps before the student may begin attending school. The parent or guardian must:

  1. Provide the school with a written prescription and/or treatment plan from a licensed health care provider,
  2. Provide the prescribed medication and/or equipment outlined in the treatment plan, and
  3. Create an Individualized Healthcare Plan with the school nurse.

Schools may develop their own forms, so contact your child’s intended school to get the correct forms and provide complete, accurate information.

Download How to Enroll a Student in School Handout

How to Enroll a Student in School Checklist To download the fillable form and get access to the clickable links, download the PDF

Additional Considerations for Military-Connected Students

Children with parents in the uniformed services may be covered by the Interstate Compact on Educational Opportunities for Military Children, also known as MIC3, was created with the hope that students will not lose academic time during military-related relocation, obtain an appropriate placement, and be able to graduate on time. MIC3 provides uniform policy guidance for how public schools address common challenges military-connected students experience when relocating, including several issues related to enrollment. Learn more about how to resolve Compact-related issues with this MIC3 Step-by-Step Checklist.

Families who are new to Washington can learn more about navigating special education and related services in this article, Help for Military Families: Tips to Navigate Special Education Process in Washington State.

Additional Information

Movers, Shakers, and Troublemakers: How Technology Can Improve Mobility and Access for Children with Disabilities

Posted on by Nicol Walsh

A Brief Overview

  • Mobility (the ability to move around) is important for interacting with the world, developing social relationships, and participating in our community
  • Ableism is when people are treated unfairly because of their body or mind differences. This can make people feel ashamed. It can also make it hard for them to move around because places aren’t accessible. This means they have fewer chances to be mobile.
  • Studies show that when kids with disabilities have self-initiated mobility (can start moving on their own), it helps them grow, make friends, and take part in things. This is true no matter how they move around.
  • Many young children with disabilities lack access to mobility technologies such as wheelchairs or supportive walking devices
  • It is important to spread the word about the benefits of mobility technology, and some of the current barriers that limit access to mobility technologies for children with disabilities
  • We need to tell people about how mobility technology can help kids with disabilities. We need to talk about why it can be hard for families to get this technology and work on making it easier to access these tools.
  • There are many ways for families to try mobility devices for children. They can work with their therapy teams to access the technology they need.
  • This article was developed in partnership with PAVE by Heather A. Feldner, PT, PhD, PCS and Kathleen Q. Voss (ed.),  University of Washington CREATE  (Center for Research and Education on Accessible Technology and Experiences)

Connecting to the World through Mobility

I want to invite you to take 30 seconds and think back to when you were a kid. What did you love to do?​ Why did you love it? How did this contribute to who you were, and how see yourself now? For me, it was playing the 80’s childhood game ‘ghosts in the graveyard’ around my neighborhood in the summer. Ghosts in the graveyard combines tag and hide-and-seek…in the dark. What could go wrong?!  I was with my friends, people I trusted. I was in my own yard, and the yards of my neighborhood. Places I knew well. Sure, there was a bit of risk, or what we thought to be risk in our young minds, but I loved to do it. I felt free and safe at the same time.​

So, what did you think of? Maybe for some of you, it was reading. For others, playing with friends at a playground, or in the sand and water at the beach. Maybe you were a dancer, or an artist. Perhaps you were on a sports team of some sort. Maybe it was none of these things. And regardless of how or where, I imagine we all got into some troublemaking. So, what made it all possible? I would guess that whatever it was, it was possible because of your ability to connect to the world, and objects, and people through mobility. ​

Ableism, Troublemaking, and the Importance of Mobility

Though we may have our own special idea of what mobility means, there’s also likely a lot of common ground, too. Let’s start with how the dictionary defines mobility and locomotion. According to Merriam-Webster, locomotion is defined as ‘the act or power of moving from place to place’. For mobility, we find ‘the ability or capacity to move; the ability to change one’s social or socioeconomic position in a community and especially to improve it.’ What stands out to you when you see these definitions? What is or isn’t included?

Note the definitions don’t talk about how people move or who’s moving. But what they do highlight is that mobility is powerful and social. We know society values some types of movement, like walking, more than others. For those with disabilities, this value judgement can lead to harm. This is ableism at work. It is thinking that being normal means being able-bodied. Ableism leads to unfair treatment of those who function differently. This connects to other ‘isms’ and makes things even harder. Even though there are tools like wheelchairs, walkers, scooters, and gait trainers to help with mobility, ableism affects how we see and value this technology in society. Because of this, people with disabilities wait longer for access, pay more, and have fewer choices. Just exploring these options can cause people to feel shame. Even then, many places are still inaccessible. Our mobility isn’t just about getting from one place to another. It helps us connect with others, make friends, explore new things, and have fun. When the mobility of disabled people is limited, it is an equity issue. For children with disabilities, ableism can take away their chance to be troublemakers.

Parents know that toddlers can be a handful. They touch everything, make messes, and often try to run away. But what if a toddler has a physical disability? How can we help them learn about their bodies and the world around them, especially when they might need help or special equipment to move around? Research shows that when kids start moving on their own, they learn a lot. They get better at understanding space, thinking, talking, and moving. Their relationships with parents and caregivers also improve. They show more emotions and hear more language from adults. These benefits happen for all kids, whether they crawl, use a baby walker, or drive a mobility device.

When kids can’t move on their own, either by using their muscles or with technology, they may have trouble starting to play and interacting with others. They may also have slower development in thinking, seeing shapes, and body awareness. Caregivers may not notice when the child tries to move or talk. Kids with disabilities are often described as quieter and better behaved than other kids. They are often placed near the fun but are not always part of the fun. This is not the child’s fault. It’s because our surroundings, technology, and ways of doing things don’t reflect how important it is for very young children with disabilities to move on their own. Parents and disabilities rights groups have worked hard to make schools more inclusive. But we need to do more to see how technology and design can help kids move and truly take part in things. As a pediatric physical therapist for kids and a technology researcher, my goal is to help kids with disabilities have more chances to be movers, shakers, and troublemakers.

Spreading the Word about the Importance of Self-Initiated Mobility

I work at the University of Washington as a researcher and associate director of an accessibility center called CREATE- The Center for Research and Education on Accessible Technology and Experiences. Our center has researchers from many different fields. We all focus on accessibility in different ways. My focus is on helping kids with disabilities access mobility technology. Our team works with children ages 1-5 who have trouble moving because of conditions like cerebral palsy, Down syndrome, spina bifida, muscular dystrophy, spinal muscle atrophy, and genetic conditions. Some kids will learn to walk. But it’s important for them to have other ways to move around while they practice. Sometimes people think using mobility technology keeps children from developing motor skills like walking. This isn’t true. Research shows that using technology can even help kids learn to walk and do other things better! Our work at CREATE is to learn more about how kids use technology to move and to explore new technology together with the disabled community. We want to share how mobility technology helps kids grow and interact with their world.

Trying Out or Obtaining Mobility Technology

  • We know it’s important for kids with disabilities to be able to move around on their own. Mobility technology can help them do that. If families want to try out or get this technology, how can they start? Here are some important things to think about:
  • Talk with your therapy team to see if they have any devices at the clinic that you can try or borrow
  • If they do not have any devices you can try, ask to be put in touch with a local durable medical equipment supplier. In Washington, you can also contact NuMotion, Bellevue Healthcare, or Olympic Pharmacy and Healthcare.
  • Regional equipment lending libraries may mobility technology for children. It is always worth asking. In Washington, Bridge Disability Ministries has locations in Tukwila and Bellevue, The Washington Technical Assistance Program (WATAP) ships mobility technology accessories (not devices themselves) across the state. There are many other libraries throughout the state that are grouped together on the Northwest Access Fund loan program website.
  • When buying mobility technology, there are many things to consider. Think about the size and weight of the device and your transportation needs. Also think about how your home is set up and how your child will grow. An equipment clinic at a local hospital or therapy center can help. They have staff that can help you find the best equipment for your child as they grow.
  • Some people buy mobility technology themselves, but most get it through public or private funding. To get funding, you need a letter from a doctor saying your child needs the equipment. The letter must explain why the equipment is a good match for your child’s needs, how much it costs, and how it will be used at home and in the community. Staff at equipment clinics usually write the letter and send it to the doctor to sign. Then they send it to the funding agency.
  • It can take 3-12 months to get approved for mobility technology, depending on how you’re paying for it. Sometimes the first request is denied, and you have to appeal. It’s important for you and your equipment clinic team to keep fighting for your child’s needs.
  • You can also make your own mobility technology through the University of Washington Go Baby Go! program. This program changes battery-powered toy cars so kids with disabilities can use them. The cars are changed with a switch and special seats to help kids move around on their own. The program is for young kids from 9 months to 5 years old and is free for families.

Families can learn more about mobility technology by taking part in research. This can help them find out what types of technology are available and get practice using it. For example, at CREATE, we have done studies on how kids with Down syndrome move and explore, how young kids learn to use powered mobility devices, and how families use adapted toy cars. Taking part in research is always up to the family. Parents must give permission for their kids to join. Research studies are usually advertised on university websites and at therapy clinics. You can also join a research registry or ask your therapy team for help finding local researchers. Research centers like CREATE partner with people with disabilities and families to find out what research is most important to them.

In conclusion, being able to move around on your own is a basic human right. It is also really important for kids’ development and social life, no matter how they do it! Mobility technology can help children with disabilities, but it can be hard for families to get. Trying out equipment through therapy providers or lending libraries, buying equipment, or taking part in research can all help your child experience the benefits of mobility technology. These benefits can help your child grow, make friends, and take part in things.

References and Additional Resources:

Sabet, A., Feldner, H., Tucker, J., Logan, S. W., & Galloway, J. C. (2022). ON time mobility: Advocating for mobility equity. Pediatric Physical Therapy, 34(4), 546-550.

Feldner, H. A., Logan, S. W., & Galloway, J. C. (2016). Why the time is right for a radical paradigm shift in early powered mobility: the role of powered mobility technology devices, policy and stakeholders. Disability and Rehabilitation: Assistive Technology, 11(2), 89-102.

UNICEF Assistive Products and Inclusive Supplies

Family Information Guide to Assistive Technology

Oregon Family to Family Health Information Center – Wheelchairs for Children and Youth. Safe and Practical Options that Support Dignity and Community Inclusion

Washington State Department of Social and Health Services – Assistive Technology Services

Center for Research and Education on Accessible Technology and Experiences CREATE

Back To School Checklist!

Posted on by Nicol Walsh

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:

  1. 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
  2. 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?
  3. 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
  4. 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.”
  5. 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?
  6. 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
  7. Have thank you notes ready to write and share!
    • Keep in mind that showing someone you appreciate their efforts can reinforce good work
  8. 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.

Tip! you can click on the image and access an accessible PDF to print and keep handy.

Back to School Checklist click to find the accessible PDF

Click to access an accessible PDF of the infographic above

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

Surrogate Parents Support Unaccompanied Students in Special Education

Posted on by Nicol Walsh

A Brief Overview

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

Full Article

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Life After High School: Tools for Transition

Posted on by Nicol Walsh

Helping a student with disabilities prepare for life after high school requires thoughtful organization and planning. This presentation describes three ways to support this important time of life:

  1. High School and Beyond Plan
  2. IEP Transition Plan
  3. Agency Support

Here are resources referenced in the video:

  • OSPI Model Forms: Scroll down to find and open the IEP Form with Secondary Transition
  • OSPI Graduation Requirements, including links to download the High School and Beyond Plan in various languages
  • DDA: Developmental Disabilities Administration
  • DVR: Division of Vocational Rehabilitation
  • TVR: Tribal Vocational Rehabilitation, for Native Americans with disabilities
  • DSB: Department of Services for the Blind, for people with blindness or low vision
  • WAC 392-172A-03090, including description of Age of Majority rights that transfer to the student at age 18
  • PAVE article about Supported Decision Making
  • OSPI: The Office of Superintendent of Public Instruction has a family liaison for special education
  • OEO: The Office of the Educational Ombuds provides online resources and 1:1 support
  • OCR: The Office for Civil Rights can help with questions about equity and access
  • ESD: Nine Education Service Districts; each has a behavioral health navigator, and some are licensed to provide behavioral health services
  • Developmental Disabilities Ombuds
  • PAVE School to Adulthood Toolkit

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.

Disability Rights for Littles: Key Information for Families of Babies, Preschoolers, and Primary-School Children

Posted on by Nicol Walsh

This two-part video series provides information about the rights of babies, toddlers, and young children with developmental delays or disabilities.

Part 1 provides information about early support services for babies through age 3. An interactive exercise is included to help families better understand how to participate in development of functional outcomes as part of the Individualized Family Service Plan (IFSP). The video includes information about how early support services are provided and delivered in Washington State and where to begin. Keep in mind that early services are provided in the natural environment—places where babies and toddlers would spend their days if there was no disability.

Part 2 includes information about the transition from early services into preschool and primary school. Families will learn how decisions are made about eligibility for an Individualized Education Program (IEP) and how to participate in educational decision-making for their child. Inclusion in general education is covered, with information about federal requirements for services in the Least Restrictive Environment, to the maximum extent appropriate. The video explains the components of an IEP and provides advocacy tips to support parents and children throughout their educational years.

Families can reach out for individualized assistance from our Parent Training and Information (PTI) staff at PAVE. Click Get Help or call 800-572-7368.

After you view the video, please take a quick moment to complete our survey. Your feedback is valuable!

Early Learning Toolkit: Overview of Services for Families of Young Children

Posted on by Nicol Walsh
Download the Early Learning Toolkit

New parents have a lot to manage. Concern about whether a child’s growth and development are on track can be confusing. This toolkit provides places to begin if caregivers suspect that a baby or young child may need services due to a developmental delay or disability.

How do I know if my child is developmentally delayed?

Washington families concerned about a child’s development can call the Family Health Hotline at 1-800-322-2588 (TTY 1.800.833.6384) to connect with a Family Resource Coordinator (FRC). Support is provided in English, Spanish and other languages. Families can access developmental screening online for free at Parent Help 123 developmental screening tool.

In addition, several state agencies collaborated to publish Early Learning and Development Guidelines. The booklet includes information about what children can do and learn at different stages of development, from birth through third grade. Families can purchase a hard copy of the guidelines from the state Department of Enterprise Services. Order at: myprint.wa.gov. A free downloadable version is available in English and Spanish from the website of the Office of Superintendent of Public Instruction (OSPI): Early Learning and Development Guidelines.

The Centers for Disease Control and Prevention (CDC) manages a campaign to Learn the Signs. Act Early. The website includes tools for tracking milestones and materials for families to learn more and plan home-based activities to promote skill development.

Birth-3 services are provided by ESIT

In Washington, the Department of Children, Youth and Families (DCYF) administers services for eligible children from birth to age 3 through Early Support for Infants and Toddlers (ESIT). Families can contact ESIT directly, or they can reach out to their local school district to request an evaluation to determine eligibility and consider what support a child might need. ESIT provides information on a page called Parent Rights and Leadership, with procedural safeguards described in a brochure that can be downloaded in multiple languages.

Evaluation determines eligibility

After a referral is accepted, a team of professionals uses standardized tools and observations to evaluate a young child’s development in five areas:

·       Physical: Reaching for and grasping toys, crawling, walking, jumping

·       Cognitive: Watching activities, following simple directions, problem-solving

·       Social-emotional: Making needs known, initiating games, starting to take turns

·       Communication: Vocalizing, babbling, using two- to three-word phrases

·       Adaptive: Holding a bottle, eating with fingers, getting dressed

Services are provided through an IFSP

Children who qualify receive services through an Individualized Family Service Plan (IFSP). Early learning programs are designed to enable success in the child’s natural environment (home, daycare, etc.), which is where the child would be if disability was not a factor. PAVE provides more information in an article and a two-part video series: 

 IDEA includes three parts

The federal law that protects children with disabilities and creates a funding source for services to meet their individualized needs is the Individuals with Disabilities Education Act (IDEA).

  1. Part A includes general guidance about the rights of children 0-21 with disabilities.
  2. Part B protects eligible students ages 3-21 with the right to school-based services delivered through an Individualized Education Program (IEP).
  3. Part C guarantees the right to early intervention services for children Birth-3 who meet eligibility criteria.

PAVE provides an overview article about the federal law and its primary features: IDEA: The Foundation of Special Education.

Child Find protects the right to evaluation

Under IDEA, school districts have the affirmative duty to seek out and evaluate children with known or suspected disabilities who live within their boundaries. That affirmative duty is protected through IDEA’s Child Find Mandate.

Child Find Mandate protects:

  • Children Birth-3 with known or suspected disability conditions that may significantly impact the way they learn and engage within their natural environment
  • Students 3-21 who may be significantly impacted in their ability to access grade-level learning at school because of a known or suspected disability condition

If these criteria are met, the school district in which the child lives has the duty to evaluate to determine eligibility for services. For more information, PAVE provides an article: Child Find: Schools Have a Legal Duty to Evaluate Children Impacted by Disability.

Information for children 3-5 or older

Children with early intervention services are evaluated to determine whether they are eligible for school-based services when they turn 3.

If a child did not receive early intervention services but disability is suspected or shown to impact learning, a family caregiver or anyone with knowledge of a child’s circumstances can request that the school district evaluate a child 3 years or older to determine eligibility for school-based services. PAVE provides information about how to make a formal written request for an educational evaluation: Sample Letter to Request Evaluation.

Preschool children have a right to be included

If eligible, students 3-21 can receive free services through an Individualized Education Program (IEP) served by the local school district. PAVE provides guidance for families new to the process: Steps to Read, Understand, and Develop an Initial IEP.

The Office of Superintendent of Public Instruction (OSPI), provides guidance specific to Early Childhood Special Education. Districts must consider how to include preschool students with non-disabled peers. General education classrooms are considered the Least Restrictive Environment, and LRE is a primary guiding principle of the IDEA.

There are 14 IEP eligibility categories

Students 3-21 may be eligible for IEP services if they meet criteria in a category defined by federal and state regulations. A PAVE article provides more detail about each of these categories and describes the evaluation process: Evaluations Part 1: Where to Start When a Student Needs Special Help at School.

Below is a list of IEP eligibility categories. The Washington Administrative Code (WAC 392-172A-01035) lists state criteria for each category.

Developmental Delay is an eligibility category for Washington students through age 9. At that point, an evaluation would need to show eligibility in one of the other 13 categories for the student to continue receiving IEP services.

Please note that a medical diagnosis is not required for a school district to determine eligibility, which is based on three criteria:

  1. a disability is present
  2. a student’s learning is significantly impacted, and
  3. services are necessary to help the child access appropriate learning.

All three prongs must be present for a student to be eligible for an IEP in one or more of these disability categories:

  • Autism
  • Emotional Disturbance (In Wash., Emotional Behavioral Disability)
  • Specific Learning Disability
  • Other Health Impairment
  • Speech/Language Impairment
  • Multiple Disabilities
  • Intellectual Disability
  • Orthopedic Impairment
  • Hearing Impairment
  • Deafness
  • Deaf blindness
  • Visual Impairment/Blindness
  • Traumatic Brain Injury
  • Developmental Delay (ages 0-9 in Wash.)

Improving Services for All Young Children with Disabilities

The Department of Children Youth and Families, State Interagency Coordinating Council (SICC) ensures interagency coordination and supports the ongoing development of quality statewide services for young children and their families. The Council advises, advocates, and collaborates on state, local and individual levels to maximize each child’s unique potential and ability to participate in society. The Council works to improve the quality of life for children who experience disability and promotes and supports family involvement and family-centered services. If you are interested in becoming a member of the SICC, attending a public meeting, and/or learning more, go to DCYF State Interagency Coordinating Council

PAVE is here to help!

Parent Training and Information (PTI)is federally funded to provide assistance for family caregivers, youth, and professionals. We know educational systems use a lot of complicated words and follow regulated procedures that can feel confusing. We do our best to help school-and-family teams work together so students with disabilities can access their right to a Free Appropriate Public Education (FAPE). Learn more about PTI and click Get Help to receive individualized assistance.

Download the Early Learning Toolkit

Early Intervention: How to Access Services for Children Birth to 3 in Washington

Posted on by Nicol Walsh

A Brief Overview

  • Early intervention services help infants and toddlers with disabilities or delays to learn and catch up in their development. This article covers some basics about services for young children in Washington State.
  • Families concerned about a child’s development can call the Family Health Hotline at 1-800-322-2588, with support in multiple languages. Parents can complete a developmental screening online for free at Parent Help 123.
  • Early Learning and Development Guidelines are downloadable from the Office of Superintendent of Public Instruction. Hard copies can be purchased at myprint.wa.gov.
  • PAVE provides an article for next steps after age 3: What’s Next when Early Childhood Services End at Age 3? Another PAVE article for families new to special education: Steps to Read, Understand, and Develop an Initial IEP.
  • PAVE’s Parent Training and Information (PTI) staff help families understand and navigate service systems for children 0-26. Click Get Help at wapave.org or call 800-572-7368.

Full Article

New parents may struggle to know whether their child’s growth and development are on track. They may have a feeling that a milestone is missed, or they may observe siblings or other children learning and developing differently. Sometimes a parent just needs reassurance. Other times, a child has a developmental delay or a disability. In those cases, early interventions can be critical to a child’s lifelong learning.

Seek guidance from a Family Resource Coordinator (FRC)

Washington families concerned about a young child’s development can call the Family Health Hotline at 1-800-322-2588 (TTY 1.800.833.6384) to connect with a Family Resource Coordinator (FRC). Support is provided in English, Spanish and other languages. Families can access developmental screening online for free at Parent Help 123 developmental screening tool.

Several state agencies collaborated to publish Early Learning and Development Guidelines. The booklet includes information about what children can do and learn at different stages of development, focused on birth through third grade. Families can purchase a hard copy of the guidelines from the state Department of Enterprise Services. Order at: myprint.wa.gov. A free downloadable version is available in English and Spanish from OSPI’s website on a page labeled: Early Learning and Development Guidelines.

Washington early services are provided by ESIT

In Washington, the Department of Children, Youth and Families (DCYF) administers services for eligible children from birth to age 3 through Early Support for Infants and Toddlers (ESIT). Families can contact ESIT directly, or they can reach out to their local school district to request an evaluation to determine eligibility and consider what support a child might need. The ESIT website includes videos to guide family caregivers and a collection of Parent Rights and Leadership resources, with multiple language options.

Early intervention services are provided in the child’s “natural environment,” which includes home and community settings where children would be participating if they did not have a disability. According to ESIT, “Early intervention services are designed to enable children birth to 3 with developmental delays or disabilities to be active and successful during the early childhood years and in the future in a variety of settings—in their homes, in childcare, in preschool or school programs, and in their communities.”

Early services are delivered through an IFSP

Children who qualify receive services through an Individualized Family Service Plan (IFSP). The right to an IFSP is protected by Part C of the Individuals with Disabilities Education Act (IDEA). The IDEA is a federal grant program that provides funding for states to implement early learning and special education programs. Part B of the IDEA protects an eligible school-age student’s right to an Individualized Education Program (IEP). Part A includes general guidance about the educational rights of children 0-21.

Family caregivers, childcare professionals, teachers, or anyone else can refer a child for an early learning evaluation if there is reason to suspect that a disability or developmental delay may be impacting the child’s growth and progress. The school district’s duty to seek out, evaluate and potentially serve infants, toddlers or school-aged students with known or suspected disabilities is guaranteed through the IDEA’s Child Find Mandate.

First Step: Evaluate to determine eligibility

Early intervention is intended for infants and toddlers who have a developmental delay or disability. Eligibility is determined by evaluating the child (with parental consent) to see if the little one does, in fact, have a delay in development or a disability. Eligible children can receive early intervention services from birth to the third birthday. 

After a referral is accepted, a team of professionals uses standardized tools and observations to evaluate a child’s development in five areas:

  1. : Reaching for and grasping toys, crawling, walking, jumping
  2. : Watching activities, following simple directions, problem-solving
  3. : Making needs known, initiating games, starting to take turns
  4. : Vocalizing, babbling, using two- to three-word phrases
  5. : Holding a bottle, eating with fingers, getting dressed

The tools used to evaluate a child provide scores that are compared with the scores of children who are typically developing. Eligibility is met based on one or more of these conditions:

Next Step: Develop a service plan

If an infant or toddler is eligible, early intervention services are designed to meet the child’s individual needs. Options might include, but are not limited to:  

  • Assistive technology (devices a child might need)
  • Audiology or hearing services
  • Speech and language services
  • Counseling and training for a family
  • Medical services
  • Nursing services
  • Nutrition services
  • Occupational therapy
  • Physical therapy
  • Psychological services

Services are typically provided in the child’s home or other natural environment, such as daycare. They also can be offered in a medical hospital, a clinic, a school, or another community space. 

Individualized Family Service Plan (IFSP): What is the plan?

The IFSP is a whole family plan, with the child’s primary caregivers as major contributors to its development and implementation. Parents/custodial caregivers must provide written consent for services to begin. In Washington, Family Resource Coordinators (FRCs) help write the IFSP. Team members may include medical professionals, therapists, child development specialists, social workers, and others with knowledge of the child and recommendations to contribute. 

The IFSP includes goals, and progress is monitored to determine whether the plan is supporting appropriate outcomes. The plan is reviewed every six months and is updated at least once a year but can be reviewed at any time by request of parents or other team members. The IFSP includes:

  • The child’s current developmental levels and needs in physical, cognitive, communication, social/emotional, and adaptive areas
  • Family information: resources, priorities, and concerns of parents/caregivers.
  • Major results/outcomes expected from the child and family
  • Specific services:
    • Where services are provided—any services provided outside the child’s “natural environment” of home/daycare/community require a statement explaining the rationale for the placement
    • When the child receives services—the number of days or sessions for each service, and how long each session will last
  • Who pays for the services
  • Name and contact information for the Family Resource coordinator (FRC) responsible for IFSP implementation
  • Steps to begin at age 2.5 to support the child’s transition out of early intervention and perhaps into school-based services.
  • If relevant, additional services or information for the family—such as financial guidance or parenting support

Dispute resolution options are available

If parents have a concern or disagree with any part of the early intervention process, they can contact their Family Resource Coordinator (FRC). If issues remain unresolved, families may choose from a range of dispute resolution options that include mediation, due process, and more. ESIT provides access to a downloadable parent rights brochure with information about dispute resolution options in multiple languages.

Most services are free to families

Washington State provides most early intervention services at no cost to families of eligible children. Some services covered by insurance are billed to a child’s health insurance provider, with the signed consent of a family caregiver. The early intervention system may not use health care insurance (private or public) without express, written consent.

Part C of the IDEA requires states to provide the following services at no cost to families: Child Find (outreach and evaluation), assessments, IFSP development and review, and service coordination.

More resources

  • Learn the Signs. Act Early. The website includes tools for tracking milestones and materials for families to learn more and plan home-based activities to promote skill development. “Early intervention services can change a child’s developmental path and improve outcomes for children, families, and communities,” the CDC encourages. “Help your child, help your family! Families benefit from early intervention by being able to better meet their children’s needs from an early age and throughout their lives.”
  • The Center for Parent Information and Resources (CIPR—ParentCenterHub.org) provides an Overview of Early intervention.
  • The US Department of Education Office of Special Education Programs (OSEP) provides funding for the Early Childhood Technical Assistance Center (ectacenter.org), based at the University of North Carolina, Chapel Hill. The center builds state and local capacity to improve outcomes for young children with disabilities and their families.
  • PAVE’s Parent Training and Information (PTI) staff provide information, training, resources, and technical assistance to help family caregivers, students and professionals understand rights and responsibilities within education systems, including those for early learning. For support, complete an online help request at wapave.org or leave a message at the helpline: 1-800-572-7368/press 115.

Find Civilian Services for Your Child With a Disability When You Leave the Military

Posted on by Barb Koumjian

A guide to finding civilian supports and services when your service member separates or retires from the military if you have a child (including an adult dependent child) with disabilities. If you are PCSing to a “forever” home location, it includes resource finders available across the United States and Territories.

As you read down the columns, you will see references to Parent Centers. Parent Centers are funded by Office of Special Education (OSEP), US Department of Education to support parents of children age birth to 26 with disabilities. If you are reading this article through the website for PAVE (*******) or through their Pipeline newsletter, you are in the right place because PAVE is the Parent Training and Information Center (Parent Center) for Washington State.

 You can also use resources at the Center for Parent Information and Resources (CPIR), a national center serving Parent Centers and families with online information. According to the CPIR:

“There are nearly 100 Parent Training and Information Centers PTIs) and Community Parent Resource Centers (CPRCs) in the US and Territories. These Centers perform a variety of direct services for children and youth with disabilities, families, professionals, and other organizations that support them. Some of the activities include:

  • Working with families of infants, toddlers, children, and youth with disabilities, birth to 26
  • Helping parents participate effectively in their children’s education and development
  • Partnering with professionals and policy makers to improve outcomes for all children with disabilities” – https://www.parentcenterhub.org/the-parent-center-network/ “

Quick-find links:

Children’s Benefits or Services
Active Duty
or Active Reserve

Keep Benefit or Service?
(retiring after 20 yrs service)

Equivalent Civilian Resources

TRICARE Medical Coverage (may include case management, mental health, hospice care)

Yes, but there may be extra financial costs

Private insurance (useful article at the Military Wallet website)
Medicaid  NOTE:  your child can be enrolled in both Medicaid and TRICARE

TRICARE for children after age 21, up to age 26 (including college students)

Yes-up to age 23 if in college (or up to graduation); after which and up to age 26, child may be eligible for TRICARE Young Adult, which charges premiums, has co-pays and deductibles.

Private insurance

Medicaid NOTE:  your child can be enrolled in both Medicaid and TRICARE

TRICARE benefits after age 26 through secondary dependency

Yes

Medicaid NOTE:  your child can be enrolled in both Medicaid and TRICARE

Supplemental Security Income (SSI) (in some states, receiving SSI helps determine Medicaid eligibility)

Private insurance

ABA Services through TRICARE’s Autism Demonstration Project

Yes, but only if the service member retires, as opposed to leaving the military prior to fulfilling the terms of service for retirement. If the service member leaves without retiring, try the resources in the right-hand column.

Medicaid NOTE:  your child can be enrolled in both Medicaid and TRICARE

Medicaid Home and Community Based Services (HCBS) Waiver * NOTE:  your child can be enrolled in both Medicaid and TRICARE

Autism resources by State (Easter Seals)

State Agencies on Developmental or Intellectual Disabilities

Extended Care Health Option (ECHO) provides supplemental support and services not available through TRICARE’s regular coverage. Some benefits similar to Medicaid HCBS waivers

No

Medicaid HCBS Waiver * NOTE:  your child can be enrolled in both Medicaid and TRICARE

Respite Care through ECHO and other programs

No, but check with the community family center at a local installation to identify any military-family support organizations which may offer funding or locator services.

Medicaid HCBS Waiver * NOTE:  your child can be enrolled in both Medicaid and TRICARE

Lifespan Respite (WA)

EasterSeals Respite locator: https://archrespite.org/respitelocator

Exceptional Family Member Program (EFMP) Family Support (help with navigating military and some civilian service systems)

Yes, at the discretion of installation

PAVE (Parent Center, Washington State)

Parent Centers

Military Child Care BenefitsMilitary Child Care Benefits

No

Private: not subsidized, but can use the directory: ChildCareAware.org. If a family has income restrictions, many States have subsidized care through Department of Health and Human Services (or equivalent)

School Liaison Office for help navigating school systems and services, especially under MIC3 (Interstate Compact)

No, except that the Interstate Compact covers your child for one year after you retire

PAVE (Parent Center, Washington State)

Parent Centers (other states)

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