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

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

 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.)

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.

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

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.

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 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 up to the work of IEP teams, which include parents and students.

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. PAVE provides a general overview of transition planning in a written article and in a video. Included is basic guidance about the state’s requirement for a High School and Beyond Plan (HSBP) to start in middle school and how to align HSBP with the IEP Transition Plan, required by age 16.

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.

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, 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. A pilot project has made the library available to individuals in select counties, and more widespread access is forthcoming. 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 will be needed. Applying for social security just past the young person’s 18th birthday not only creates a pathway toward a cash benefit but enables the young person to access Medicaid (public health insurance) and various programs that depend on Medicaid eligibility.

Benefits Information for Individuals and Families is available from the Washington Initiative for Supported Employment (gowise.org). Clark County WISE staff partner with PAVE and other regional agencies to produce a Family Training Series, with topics that include school services planning, life planning, social security, and more. The Start Now 2020-21 series was launched in partnership with PAVE, and a recording is accessible in English, Spanish, sign language, and with subtitles: Transition Training Series: Preparing for High School and Beyond (In English and Spanish).

A photo depicting a zoom call with youth and a mentor is displayed Inviting people to the Tools 4 Success Conference
Register Now! The Tools 4 Success Conference is designed for youth, young adults, and community members who experience a disability to dream, imagine, and shape their future! The 2021 Virtual Conference will be LIVE on two dates: March 23rd and March 30th LIVE sessions at 10 am and 1 pm on both days, Pre-recorded sessions will be available to view on-demand, Community Resource pages, and Bonus materials.

Respite Offers a Break for Caregivers and Those They Support

A Brief Overview

  • Respite offers a short-term break for caregivers and those they support. This article provides information and resources to get started seeking respite services.
  • Lifespan Respite Washington, a program of PAVE, provides vouchers with up to $1,000 per qualifying household, to fund respite care.
  • Pathways to Respite, an online booklet published by several Washington agencies, provides further guidance. The guidebook defines caregiver stress and explains why breaks are critical to everyone’s well-being.
  • The ARCH National Respite Network and Resource Center provides a free, downloadable 17-page guidebook, ABCs of Respite: A Consumer Guide for Family Caregivers. ARCH stands for Access to Respite Care and Help. The ARCH resource center also provides information and resources specific to Respite During COVID-19.
  • Veteran’s families may qualify for respite through the Program of Comprehensive Assistance for Family Caregivers (PCAFC), operated by the United States Department of Veterans Affairs. The final section of this article includes additional military-specific resources.

Full Article

Modern families come in many styles. Primary caregivers may be parents, and they might be other relatives (kinship providers), friends, or neighbors. “Care recipient” is a term for anyone who requires assistance for daily living. “Caregiver” refers to anyone who provides regular assistance to a child or adult with a chronic or disabling conditions.

Caregivers and care recipients develop unique rhythms and relationships. Sometimes, both need to press pause and reset. Pathways to Respite, an online booklet published by several Washington agencies, provides guidance about caregiver stress:

“Putting the needs of everyone else before your own may solve an immediate stress; however, in the long-term, it can lead to increased anxiety, frustration, overwhelming feelings, resentment, depression, burnout, and even illness. Whether you think of yourself as a caregiver or not, these are all signs of caregiver stress.”

Respite offers a short-term break for caregivers and those they support. Time apart can boost well-being for all: While caregivers temporarily shift their focus to self-care, care recipients have time to meet new people and explore new interests.

Finding an appropriate respite service and organizing payment can feel challenging. This article provides guidance to simplify the steps.

Check standards and safety measures

When researching a respite agency, caregivers can assess whether the agency meets standards and is following appropriate safety measures, especially during the COVID-19 pandemic.

Lifespan Respite Washington provides a checklist with questions to consider. Here are a few examples:

  • How are the workers selected and trained?
  • Can the respite worker administer medications or assist with medical tasks?
  • If the provider will be driving the care recipient, do they have a valid driver’s license?
  • How are emergencies and problems handled?
  • What safety measures are in place to protect against COVID-19?

Registered, publicly funded respite providers are required to meet certain standards and qualifications, including background checks and training. The public agency that pays for the service is responsible to track and share information about those procedures and quality measures. If respite is paid for by private medical or long-term care insurance, providers must meet the insurance company’s standards. Caregivers can ask an insurance company representative to explain the standards and how they are upheld.

The ARCH National Respite Network and Resource Center provides a free, downloadable 17-page guidebook, ABCs of Respite: A Consumer Guide for Family Caregivers. ARCH stands for Access to Respite Care and Help. The ARCH resource center also provides information and resources specific to Respite During COVID-19.

What respite services would be most helpful?

Respite includes a broad range of services. Some organizations offer short-term, overnight stays in their facilities and some provide daytime services. Some respite services are delivered into the home, including these examples:

  • personal hygiene care
  • meal preparation
  • light housekeeping
  • companionship, activities, or supervision

Community Living Connections (CLC) provides an online assessment to help caregivers figure out what type of help they may want or need. Washington State’s CLC is part of a national collaborative that includes the U.S. Department of Health and Human Services, the Veterans Administration, and the Centers for Medicare & Medicaid Services.

Washington’s Pathways to Respite booklet includes “fill-in-the-blanks” tools to help define needs, including the following example:

“I would like to take a break, but I am concerned that___________” and “If I had some time to myself, I would _____________.”

Pathways to Respite was developed by Informing Families, a resource of the Washington State Developmental Disabilities Council, in partnership with the Washington State Developmental Disabilities Administration, Aging & Long-Term Support Administration, and PAVE, which administers Lifespan Respite WA.

Determine payment to choose a provider

If a family will pay directly for respite services, providers are easily found online. Here are some suggestions to launch a search:

  • Adult Day Services Washington State
  • After-school programs children with special health care needs Washington State
  • In-home respite care Washington State

Another way to navigate the provider system is to connect to a website managed by SEIU 775:  The Service Employees International Union is comprised of independent service providers who have a collective bargaining agreement with Washington state’s Department of Social and Health Services (DSHS).

If a care recipient is eligible for respite through private medical insurance, the insurance company will list approved providers.

Publicly funded respite programs also provide lists of registered providers. Family caregivers who have respite funding through Medicaid or the Developmental Disabilities Administration (DDA) can use CarinaCare.com, an online tool to connect individuals with providers. A Who’s Who page describes provider credentials.

Vouchers are available from Lifespan Respite WA

Lifespan Respite WA provides information about how to apply for a voucher. Vouchers are “mini-grants” for unpaid caregivers supporting a family member, friend or neighbor who has a special need or condition. The vouchers, up to $1,000 per qualifying household, can be used with any of the registered Lifespan Respite Providers

To qualify, the caregiver or care recipient cannot be enrolled in a respite or Medicaid personal care program. (Exceptions are made for persons on a waiting list and not scheduled to get respite services within 30 days of applying for a Lifespan voucher.) Additionally, a caregiver must:

  • Be unpaid
  • Provide 40 or more hours a week of care
  • Not receive respite from any other program
  • Live in Washington State
  • Be unable to afford to pay privately for respite care

Who qualifies for free or low-cost respite care?

In Washington State, eligibility for free or low-cost respite services may depend on a person’s circumstances or the category of disability.

  • Seniors and Adults with Disabilities
    • Seniors 65 and older who meet functional and financial eligibility can receive a variety of services through Home and Community Services (HCS).
    • Unpaid caregivers of adults 55 and older who meet functional and financial eligibility can receive respite care and other needed support services like caregiver education, support groups, housework and errands and other services.
  • People with Developmental Disabilities (All Ages) and Children with Disabilities
    • Children and adults with developmental disabilities who meet eligibility criteria for Developmental Disabilities Administration (DDA) may be able to receive respite, personal care, assistive technology, community engagement support, and other services provided through Home and Community-Based Services and Community First Choice (CFC).
    • Children with disabilities who are not DDA eligible may still be able to receive CFC through DDA.

How to apply:

Foster care respite

Respite care is available for foster parents licensed by the Division of Licensed Resources (DLR), a Tribal agency, or a Child Placing Agency (CPA). Unlicensed relative caregivers or those determined to be “suitable person placements” also can receive respite, as can caregivers assigned by the Department of Children, Youth, and Families (DCYF) or a Washington Tribe. 

Child Specific Respite (CSR) is linked directly to the medical, behavioral, or special needs of an individual child. CSR authorizes respite relief to families providing care to a child placed by DCYF on a case-by-case basis, consistent with the written service plan for the child.

Veterans and Military Family Caregivers

Veteran’s families may qualify for respite through the Program of Comprehensive Assistance for Family Caregivers (PCAFC), operated by the United States Department of Veterans Affairs. PCAFC offers up to 30 hours of respite: Program options, eligibility and the application process are described in a downloadable booklet published Oct. 1, 2020.

The Elizabeth Dole Foundation and the U.S. Department of Veterans Affairs offer Respite Relief for Military and Veteran Caregivers, no-cost, short-term relief with the help of in-home care professionals. See Hidden Heroes for further information.

Active-duty military and Activated Reserve or National Guard family caregivers may be eligible for respite care through TRICARE, the military healthcare system. Here are resources for military family caregivers:

  • Respite care for primary caregivers of service members injured in the line of duty can be found on the TRICARE website.
  • Extended Care Health Option (ECHO) can be a respite resource for caregivers of non-military family members.
  • Some installations have respite funding available when the care recipient is enrolled in the Exceptional Family Member Program.
  • Coast Guard family caregivers have the Special Needs Program which may offer respite or funding for respite:
  • Coast Guard Mutual Assistance has Respite Care Grants available for eligible Coast Guard clients who have responsibility 24 hours per day to care for an ill or disabled family member who lives in the same household.