Tag: special needs

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

You can print this toolkit as a PDF! Click to download this page

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.)

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.

Click to download this 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

Response to Intervention (RTI) – Support for Struggling Students

Posted on by Nicol Walsh

Brief overview

  • Students struggle in school for different reasons.
  • RTI is an acceptable way of identifying students with learning disabilities.
  • RTI isn’t a specific program or type of teaching.
  • RTI works on a tier system with three levels of intervention.

Full Article

Students struggle in school for different reasons. Response to Intervention (RTI)  can help by combining high quality, culturally responsive instructions with assessments and interventions that are proven to work by evidence from research.

RTI was originally recognized in the 1970s as a system for helping students with potential learning problems early, instead of waiting until they fail. With the reauthorization of the Individuals with Disabilities Education Act (IDEA) in 2004, RTI was noted as an acceptable way to identify students with learning disabilities. RTI can help students who haven’t yet been identified as eligible for special education or those who struggle but don’t qualify for special education services.

At any time during the RTI process, parents or teachers can request an evaluation for special education services.  The evaluation can determine whether a student qualifies for an Individualized Education Program (IEP) or accommodations through a Section 504 Plan. RTI does not replace a school’s responsibility to evaluate students who might qualify for special education services. See PAVE’s article on Child Find, a mandate of the Individuals with Disabilities Education Act (IDEA).

RTI’s goal is for schools to intervene before a student falls too far behind. RTI is not a specific program or type of teaching, but rather a proactive way to check in with a student to see how things are going. Data help school staff decide which types of targeted teaching would work best for the student. If a student’s progress is slow or stagnant, then teachers adjust based on the student’s needs. 

RTI has three levels, or tiers, for intervention:

  • In the general education classroom
  • In a special education classroom, resource room, or small group
  • For an individual student

RTI works best when parents are involved

Parents can monitor their child’s progress and participate in the process. Parents can talk to the school about which instructions or reinforcements are working and boost the benefit by being consistent with the same strategies at home.

As military families move from one location to another, they may notice that each school uses different techniques to implement RTI programs.  Schools will format their programs to best fit the needs of their students by using a variety of tools to improve learning for all students. Keeping up with what’s happening at school might be challenging but can help the student find success.

RTI is part of a Multi-Tiered System of Supports (MTSS) framework.  MTSS provides a method for intervention in academic and non-academic areas, including Social Emotional Learning or behavior support. MTSS is used to support adult students and professionals as well. In this video, a researcher from the American Institutes for Research, Rebecca Zumeta Edmonds, Ph.D., discusses differences between MTSS and RTI.

PAVE has an article that describes MTSS and how it can provide a larger framework for Positive Behavior Interventions and Supports (PBIS), when a child’s behavior becomes a barrier to learning.

For more information on RTI, MTSS, and PBIS:

The Three RTI Tiers

Center on Response to Intervention

Response to Intervention (RTI)

 What is the Difference Between RTI and MTSS?

MTSS: What You Need to Know

Positive Behavioral Interventions & Supports (PBIS) in Schools

I want the kind with the people and the pictures

Posted on by Nicol Walsh

By John O’Brien

After a Difficult Start…

Institutionalized from age three to twenty-three in a place where “they treated us like animals”– Mike has composed a good life, taking many valued roles: husband, father, worker, home owner, friend, organizer, advocate, mentor, teacher, neighbor.[1] Anticipating the changes that come with aging, Mike requested funding for a person-centered plan from his case manager (a service option in his state). The case manager said that it was unnecessary for him to spend any of his budget on a plan because a new Federal Rule requires that Mike’s annual plan of care meeting be a person-centered plan. Mike, who has participated in many person-centered plans organized through self-advocacy, asked some questions about the required plan and concluded, “I still want the kind with the people and the pictures.”

Regulations that require a person-centered plan as a condition of receiving Medicaid Waiver funds introduce a distinction between Want-to-plans and Have-to-plans. Each can make a positive contribution; both must creatively respond to constraints. A good Want-to-plan supports discovery of possibilities and life direction and mobilizes a person’s allies at important moments in their lives. A good Have-to plan gives a person effective control of the Medicaid waiver funded assistance they rely on. Committed and skilled facilitators with the time necessary to prepare and follow-up make a difference to the impact of both kinds of plan. How well either process works for a person depends on conditions outside the planning process: the extent, diversity and resourcefulness of the person’s social network; the openness of the person’s community; the flexibility and responsiveness of providers of necessary assistance; the sufficiency of public funds for necessary assistance and the means for people to control those funds. Good plans will identify the current reality of these conditions and consider how to engage them.

Mike’s is a want-to-plan. At his initiative, he and his invited allies (the people) collaborate to create a customized process to address his desire to deal proactively with the new responsibilities and increasing impairments that show up with aging. Mike chose Michele, an experienced facilitator, to guide the process. Their agreement makes it clear that Michele is responsible for facilitating a process of change over time, not just a meeting.[1] A graphic record (the pictures), created by Alex, provides an energizing memory of what emerges, a way to track and update action plans, and a way to orient new people to Mike’s intentions.[2] Occasional check-ins and revisions guide continuing action. One-to-one meetings assist Mike in sorting through all the suggestions and offers of help he receives to assure a good fit with who he is. Mike will bring some the information generated by this work to inform the required annual person-centered support plan, but his Want-to-Plan does not substitute for it.

Mike’s experience unfolds under highly favorable conditions for any person-centered plan. He has a strong desire to assure his wife and himself the best possible old age. Reciprocity for decades of generous neighborliness, concern for co-workers and leadership in advocacy give him a diverse network to call on. He is not inhibited in asking for help when he needs it. The help he needs is largely with navigating the unfamiliar territory of selling and buying property and preparing wills and other necessary documents and demands no change in his current paid services. Hard work and careful management has accumulated equity in family home. Many Want-to-plans will need to include provision for strengthening or establishing the social and material conditions for moving toward a desirable future.

Want-to-plans can also originate in a person’s positive response to an invitation to join a process of organizational change. This sort of plan poses a challenge that an organization must stretch its capacities to meet.

Have-to-plans are a necessary step in determining expenditure of Medicaid funds on services to meet the assessed needs of eligible people. They are the final responsibility of system staff assigned to coordinate services. While the process can vary to accommodate a person’s preferences, the process and resulting plan must comply with detailed standards. The New York OPWDD Person Centered Planning Regulation Checklist enumerates 23 requirements, 21 of which track US Federal Regulations.[3]

Have-to-plans serve a worthy purpose. The rules set conditions for the person to direct the meeting, understand the results and assure that the person-centered service plan documents the person’s needs strengths, preferences, goals and appropriate services.

This checklist item, based on a Federal requirement, identifies the intended result of Have-to plans:

2‐5. The plan documents the necessary and appropriate services and supports that are based on the individual’s preferences and needs and which will assist the person to achieve his/her identified goals. [Complies with CFR 441.301©(2)(v)]

This form of words sets Have-to-plans in the context of publicly funded disability services. Offering increased influence on which available provider(s) will serve a person and how those services will be of assistance is a clear benefit of Have-to-plans when there is a real choice among providers with a capacity to individualize supports.

This standard also locates a tension that constrains Have-to-plans as two impulses struggle with each other within the same sentence. One impulse, energized by commitment to self direction and the development of people’s strengths, expresses the life a person wants to live and the supports that they prefer to live that life. The other, tied to the historical anomaly of funding US disability support as if it were a medical service, aims to select necessary and appropriate services that are clearly linked to professionally assessed need. State policy can bias the struggle toward one impulse or the other. In some states[1] the person centered plan is bracketed between an assessment of need that involves an extensive inventory of a person’s deficiencies and writing an Individualized Service Plan (ISP) that must demonstrate a direct connection between assessed need and specified services and avoid public funding of “wants” or “lifestyle choices”. Without the skillful facilitation of an intentional shift in perspective, a Have-to-plan will be primed by a focus on deficiencies and develop within unconscious boundaries set by judgements of what can realistically be funded.

A Want-to-plan can safeguard a Have-to-plan. A person and those who care can choose to create a space outside the world of disability services for conversation about a person’s identity, gifts and capacities and the circumstances that offer the best life chances. Often, as with Mike, some action will result from this conversation that requires no change in publicly funded services. When the sort of changes in services that require a Have-to-plan are necessary, a person and their allies have a foundation for negotiating what they need from publicly funded services.

____________________________________________________

[1] See for example, NJ Division of Developmental Disabilities (March 2016). Supports Program Policies & Procedures Manual (Version 3.0).

[1] Other agreements might suit other circumstances. A different person might agree to fill the necessary follow up role.

[2] Denigrating graphic records has become a cliche criticism of person-centered planning (“people have colorful pictures on their walls but their lives are unchanged”). Lack of commitment or capacity for creative action seem to me more likely causes of inaction than a vivid record of people’s thinking does.

[3] http://www.opwdd.ny.gov/sites/default/files/documents/PCPChecklist.pdfThe 22nd standard, specific to New York, defines a person-centered planning process as a right and requires written notice of that right. The 23d assures that all relevant attachments are filed with the plan. The rule itself, Medicaid Program; State Plan Home and Community-Based Services, 5-Year Period for Waivers, Provider Payment

Reassignment, and Home and Community-Based Setting Requirements for Community First Choice (Section 1915(k) of the Act) and Home and Community-Based Services (HCBS) Waivers (Section 1915(c) of the Act), was published in the Federal Register on January 16, 2014.

[1] You can view Mike’s witness to growing up in an institution and a snapshot of his life today in this 2015 TV investigation into his state’s continuing operation of institutions: http://www.king5.com/news/local/ investigations/wash-decades-behind-in-serving-developmentally-disabled-1/48265785