Life After High School: Tools for Transition

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

  • 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

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

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

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

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

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)

Response to Intervention (RTI) – Support for Struggling Students

Brief overview

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

Full Article

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

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

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

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

RTI has three levels, or tiers, for intervention:

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

RTI works best when parents are involved

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

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

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

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

For more information on RTI, MTSS, and PBIS:

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

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

 

Early Learning Transition: When Birth-3 Services End

The Individualized Family Service Plan (IFSP) ends when a child turns 3. A transition to a preschool plan with an Individualized Education Program (IEP) requires a new evaluation and is a team-led process:

Planning begins 6-9 months before the third birthday.

  • The Family Resource Coordinator (FRC) schedules a transition conference to design a written Transition Plan.
  • The transition includes an evaluation that is conducted by the local school district and usually begins 2-3 months before the child’s third birthday.
  • If the child is determined eligible, the child will transition from a family-centered program of early learning (IFSP) into a school-based program (IEP).
  • Parent participation is critical: You are an important member of the transition planning team!

To qualify for an IEP, the child must meet evaluation criteria under the Individuals with Disabilities Education Act (IDEA). Criteria for Birth-3 services (Part C of the IDEA) are slightly different than the criteria for Special Education programming available for ages 3-21 (Part B of the IDEA).

To qualify for an IEP: (1) The student is determined to have a qualifying disability.  (2) The disability adversely impacts education. (3) The evaluation indicates a need for specially designed instruction.

Differences in Eligibility

IDEA Part C
(Also called Early Intervention -IFSP)

IDEA Part B
(Also called Special Education – IEP)
25% or 1.5 SD (Standard Deviation) Below the mean in one area of development – OR- 2 SD (Standard Deviation ) below the mean in one or more areas of development – OR –
Diagnosed physical or medical condition that has a high probability of resulting in delay  1.5 SD below the mean in two or more areas of development

Qualifying Disability Categories for IEP:

  • Developmental Delay (ages 3-8)
  • Specific Learning Disability
  • Intellectual Disability
  • Autism
  • Hearing Impairment
  • Emotional Disturbance
  • Deaf-blindness
  • Multiple Disabilities
  • Orthopedic Impairment
  • Other Health Impairment
  • Deafness
  • Speech/Language Impairment
  • Traumatic Brain Injury

A child who doesn’t qualify for an IEP:

  • May qualify for a Section 504 plan, which provides accommodations under the Rehabilitation Act of 1973 when:
    • The disability significantly limits one or more major life activities.
    • The student needs accommodations to access the general education curriculum.
  • May qualify for other services like Head Start, co-operative pre-school, paid pre-school or day care with early achievers, play-to-learn programs, and other early learning opportunities in a community setting.

Use this checklist to help track your family’s transition steps:

6-9 months before the child’s third birthday:

  • The Family Resource Coordinator (FRC) starts talking about transition.
  • The FRC transmits your child’s records to the school system, with your written consent. The most recent IFSP and evaluations/assessments are included.
  • If your child is potentially eligible for Part B services, a transition conference is scheduled.
  • Community resources are located.

Transition Conference:

  • Parent’s rights in special education are explained.
  • Options for early childhood special education and other appropriate services are discussed.
  • A transition time line is developed.
  • A transition plan is written into the IFSP.

Evaluation:

  • If you agree, you sign consent for evaluation.
  • Records from Early Intervention Services are received at the school.
  • Information from the family is considered.
  • Evaluation is completed, and the eligibility meeting is held within 35 school days so that an IEP can be developed before the child’s third birthday.

IEP Meeting:

  • The IEP meeting is scheduled with a formal written invitation with date, time and location.
  • Discussion and decision-making include the family, the FRC (with parent permission), and an early childhood special education staff member.
  • Eligibility for special education is decided.
  • If the child is eligible, the Draft IEP is brought to the team meeting and you will have the opportunity to agree or disagree.
  • You receive a copy of your rights and procedural safeguards.
  • If you agree, you sign consent for services to begin.

The IEP in action:

  • The child makes the transition from Early Intervention to Early Childhood Special Education or another pre-kindergarten arrangement, if chosen.
  • The IEP is in place by our child’s third birthday.
  • The team of professionals and parents continue working together to resolve any issues that arise.
  • All IEP team members communicate during this time of change.

What’s Next when Early Childhood Services End at Age 3?

A Brief Overview

  • Services for families with infants and very young children include family-focused, home-based support. Families are served with an Individualized Family Service Plan (IFSP). An IFSP ends when the child turns 3.
  • A child who qualifies for an Individualized Education Program (IEP) receives those services at school. Not all children who qualified for an IFSP will quality for an IEP. An IEP is for children ages 3-21, or until high-school graduation.
  • Families may transition from getting in-home help for their child with special needs to participating as members of an IEP team. This can feel like a big change. The information in this article can empower parents.
  • Transition planning starts at least half a year before the child’s third birthday. Providers, teachers, school administrators and the family start thinking and collaborating early about what the child might need to do well.
  • Read on to learn what parents need to know when a young child with special needs makes the transition from Birth-3 services into preschool or another program.
  • A parent-support agency called Informing Families provides a 12-minute video to guide parents through the early-learning transition process. 

Full Article

When a child is born with a disability or the family realizes early that an impairment might impact a young child’s ability to learn and develop at a typical rate, the family can get help from the state. Early Support for Infants and Toddlers (ESIT) is managed by Washington’s Department of Children, Youth, and Families (DCYF).

Services for families with infants and very young children include family-focused, home-based support. When a child is ready to graduate from those early-learning services, the school district determines whether to conduct an educational evaluation to see whether the child qualifies for school-based services. If a child qualifies, the family and school district work together to generate an Individualized Education Program (IEP), which can begin at age 3 in preschool.

A child who qualifies for an IEP receives those services at school. Families transition from getting in-home help for their child with special needs to participating as members of the IEP team. The goals change, and parents help teachers and school staff talk about what the child needs to successfully access school and learning. This transition can be disorienting to some families. Read on for more detail.

Early Intervention can start from birth

Early intervention services are guaranteed by the Individuals with Disabilities Education Act (IDEA), under “Part C” of the IDEA. The U.S. Department of Education manages a federal grant program under the Office of Special Education Programs (OSEP) that helps states manage early intervention programs to support infants and young children and their families.

Part C services are available for infants and young children who:

  1. Experience developmental delays, which are medically diagnosed to impact cognitive, physical, communication, social-emotional and/or adaptive skills
  2. Have a diagnosed physical or mental condition that has a high probability of resulting in a developmental delay

Washington’s ESIT program assigns agencies in each county to serve as a “lead agency” to coordinate early learning services and testing. The lead agency works with service providers and the family to review a child’s medical record, discuss any observations by caregivers, and conduct screenings to see what’s going on and whether the issues of concern meet criteria under Part C for early intervention. 

When a child is found eligible for services, a Family Resource Coordinator (FRC) manages the case. The FRC helps to develop an Individualized Family Service Plan (IFSP). Each plan is unique and may involve individualized instruction, therapy services and supported access to community resources. The plan is designed around the needs of the child and family and is not based on a predetermined program model.

Family-based, early learning services end on the child’s third birthday. A new educational evaluation is required to see whether the student qualifies for an IEP under “Part B” of the IDEA.

Part B services are available for children ages 3-21 (or until high-school graduation) who:

  1. Have a qualifying disability in at least one of 14 federal qualifying categories
  2. Are significantly affected by that disability at school (“Significant Educational Impact” is determined with evidence and data)
  3. Require specialized instruction to overcome the barriers of that disabling condition

To qualify for an IEP under the IDEA, a student meets criteria in one of 14 disability categories

Autism

Deaf-blindness

Deafness

Emotional Disturbance

Hearing Impairment

Intellectual Disability

Multiple Disabilities

Orthopedic Impairment

Other Health Impairment

Specific Learning Disability

Speech / Language Impairment

Traumatic Brain Injury

Visual Impairment/Blindness

Developmental Delay (ages 0-8)

 

Note that the disability category of developmental delay can qualify a child for free, family-focused services to age 3 and school-based, IEP services through age 8.

Helpers get creative during “Part C-to-B Transition” planning

The FRC helps the family and school district get ready. Often this is referred to as “Part C-to-B Transition” planning, so it’s helpful when families understand that Parts C and B come from federal law, the IDEA (Individuals with Disabilities Education Act), designed to ensure that children with disabilities get the help they need to be successful at school and prepared for life.

For families who have received services through the state’s early-learning program (ESIT), Part C-to-B Transition planning starts at least half a year before the child’s third birthday. Providers, teachers, school administrators and the family start thinking and collaborating about what the child might need to do well. The work includes a “Transition Planning Conference,” which happens about 90 days before a child turns 3. The participants at this meeting write a plan for what services or community supports the child might receive. 

Each plan is unique and designed to respond to individual needs. A child’s plan might indicate need for a specific child-care setting or medical-based therapies. The plan might include a referral to a specific, state-funded special-education preschool program through Head Start or the Early Childhood Education and Assistance Program (ECEAP, pronounced “E-Cap”). A transition plan also can name local playgroups or parent-support networks to connect the family to community resources. If a child’s educational evaluation has determined that the child is eligible for an IEP, then information about that is included.

Not all children who qualified for early-learning support will qualify for an IEP. Children who are not eligible for IEP services might be eligible to receive accommodations and support through a Section 504 Plan.

Early learning isn’t the only pathway to an IEP evaluation

Children who didn’t receive early-learning interventions can also be evaluated to determine whether they qualify for school-based services that can start as young as age 3 and can continue through age 21, or until a student graduates from high school.

Anyone with concerns about a child can refer the child for an educational evaluation. These referrals usually come from parents, teachers, medical providers or early-learning specialists. When a concerned adult formally requests an evaluation from the school district (best-practice is to make the request in writing), then the district is bound by the IDEA to respond to that request within 25 school days. PAVE provides a comprehensive article about the evaluation process.

The school district has a responsibility under the Child Find mandate of the IDEA to seek out and evaluate children with known or suspected disabilities who may need services. 

When a school district agrees to evaluate, parents sign consent for the assessments to begin. The IDEA requires schools to complete an evaluation within 35 school days. For a child receiving early-learning services, the first IEP meeting is required on or before the child’s third birthday.

Families may invite whomever they want to an IEP meeting. For example, they can invite the Family Resource Coordinator (FRC), a family member, a friend or any other support person. 

If the school district does not conduct an educational evaluation, or if the evaluation indicates that the child doesn’t qualify for school-based, IEP services, parents have the right to disagree with the school’s decision. The family can request a written statement that describes the school district’s position, with any information or data that was used to justify the decision.

Parents have rights to disagree through a variety of dispute engagement options. PAVE provides comprehensive articles about evaluation, IEP process and Procedural Safeguards, Student and Parent Rights.

PAVE’s Parent Training and Information (PTI) center provides technical assistance and can help parents understand how to participate in their child’s learning. Got to: wapave.org/get-help or call (253) 565-2266, 1-800-5-PARENT ext.115

The Arc of Washington hosts local Parent-to-Parent (P2P) programs across the state. Families can request a “support parent match” to talk with another parent who has already navigated this process. Visit Arcwa.org for more information.

Additional Resources:
Informing Families – informingfamilies.org
Office of Superintendent of Public Instruction (OSPI) – k12.wa.gov   
OSPI Early Childhood services –  k12.wa.us/Specialeducation/earlychildhood
Early Intervention Resources in English and Spanish – ParentCenterHub.org
Washington State Department of Children, Youth, and Families – dcyf.wa.gov

If you are concerned about a child’s development:

Developmental Screening (Birth to Three and Medically needed developmental screening)

What is Developmental Screening?

Developmental screening is the practice of systematically looking for and monitoring signs that a young child may be delayed in one or more areas of development. Screening is not meant to establish a diagnosis for the child, but rather to help professionals and families determine whether more in-depth assessment is the next step. By using a high-quality screening tool, professionals can screen children for delays accurately and cost-effectively.

Think about your child’s first months. The medical professionals set up regular “Well-child” appointments just to monitor how your child is doing.  These “Well-child” visits allow doctors and nurses to have regular contact with children to keep track of the child’s health and development through periodic developmental screening. Developmental screening is a simple process that can have both informal and formal assessments. When using a tool that is more formal in nature, the short test can tell if a child is learning basic skills when he or she should, or if there are delays. Developmental screening can be done by other professionals in health care, community, or school settings.

We have heard many times over the years that a child’s greatest window for development is in the first five years of life. Eighty-five percent of the brain’s development occurs before age three, making the first years of life critical to a child’s future success. The research shows that early intervention greatly improves a child’s developmental and social skills. Early intervention services help children from birth through 3 years of ages. Services usually include the support of an early educator who works with the family, as well as therapy (if identified as a need) to help the child talk, walk, and interact with others.

It’s not uncommon for parents to become concerned when their little one doesn’t seem to be developing within the normal schedule of “baby” milestones. You may worry that he hasn’t rolled over yet, or that he isn’t doing what the neighbor’s child, who is about the same age is doing. There may be concerns about your baby sitting up or beginning to verbalize words and sounds.

While it’s true that children develop differently, at their own pace, and that the range of what’s “normal” development is quite broad, it’s hard not to worry and wonder. If you think that your child is not developing at the same pace or in the same way as most children his or her age, it is often a good idea to talk to your child’s pediatrician. Explain your concerns. Tell the doctor what you have observed with your child. The doctor or other professionals might ask you some questions they may also talk and play with your child to see how he or she plays, learns, speaks, behaves, and moves. A delay in any of these areas could be a sign of a problem.

You can also get in touch with your community’s lead agency for birth-to-three services, and ask for an evaluation to see if there are possible delays. Based on referrals from the Doctor and the evaluation provided by the early intervention team, your child may be eligible for early intervention services, which will be developed with you and will address your child’s special needs.

Screening is a simple process that can identify infants and young children who may be at risk for health, developmental, or social/emotional problems. It identifies children who may need a health assessment, diagnostic assessment, or educational evaluation. “Screening” means using a standardized instrument. This could include a parent questionnaire, observational process, or other form of measurement that has been validated by research to learn more about the child’s development. Using a standardized instrument is much more effective for identifying real concerns or delays than just using professional judgment or informal questions about the child’s development.

The screening process provides an opportunity for young children and their families to access a wide variety of services and early childhood programs. It also supports the parents’ understanding of their child’s health, development, and learning.

The developmental screening and evaluations can lead to the involvement of a Family Resource Coordinator who will walk with the family through those first three years. They do a family needs assessment, if the family wishes to have one done. This helps identify areas the needs and priorities of the child’s family. Family-directed services are meant to help family members understand the special needs of their child and how to enhance the child’s development.

The need to provide early intervention is significant. Many children with developmental delays are not being identified as early as possible. This can result in these children waiting to get the help they need to do well in social and educational settings until they are in a school or pre-school setting. Research has shown that in nearly one in six Washington kids has a developmental delay, but only 30% of these children are identified before starting kindergarten, when early support services are most effective. Additionally, research has also identified that in the United States, about 13% of children 3 to 17 years of age have developmental or behavioral disabilities. These can include autism, intellectual disabilities, and attention-deficit/hyperactivity disorder. Additionally, there are children who have delays in language, social skills, or other areas that affect school readiness. This same research found that many children with developmental disabilities weren’t identified before age 10. These types of delays have significant implications since by that age there are significant delays that might have been addressed earlier and provided opportunities for services and support that was missed.

Because of the rapid growth in a child’s first three years of life, early support and monitoring of child development is essential for these children to reach their full academic potential as well as social and personal success. In all cases, kids will experience greater success academically, socially, and personally if delays are caught early and kids and families get the support they need. Free developmental screening using the Ages and Stages Questionnaire-3 screening tool is one of the best ways to get more awareness of what can help your child. In addition to the Ages and Stages survey a terrific tool and support network has been established called “Within Reach”. The “WithinReach” website is committed to supporting optimal child development of all Washington families. Through the “WithinReach” Family Health Hotlineand Child Development program, families can access free developmental screening, connections to early learning and family support and referrals to early intervention for developmental delays.

If you would like a free developmental screening for your child or have concerns about your child’s development, it is as easy as calling their Family Health Hotline (800) 322-2588 or visiting their website at www.ParentHelp123.org.

Remember that as important as Developmental screening is as a part of early intervention, can go also be important in assuring that the needs of children of older ages also find success and resources. Developmental screening for older youth can include areas of the individual’s development in mental health, social and emotional needs, and communication needs, just to name a few. Developmental screening will help assure that the needs of the individual whether an infant or an older child, can be met, and how those needs can be met. As parents and family members we have a responsibility to help our children thrive and developmental screening can help us know which path to follow to make that happen.

Resources for this article:

http://www.cdc.gov/ncbddd/childdevelopment/screening.html

http://www.parentcenterhub.org/repository/ei-overview/

http://www.health.state.mn.us/divs/cfh/topic/devscreening/screening.cfm

http://agesandstages.com/research-results/why-screening-matters/developmental-screening/

http://www.cdc.gov/ncbddd/autism/index.htm

http://www.cdc.gov/ncbddd/actearly/pdf/parents_pdfs/intellectualdisability.pdf

http://www.cdc.gov/ncbddd/autism/index.htm

http://agesandstages.com/

http://www.withinreachwa.org/what-we-do/healthy-families/child-development/

http://www.cdc.gov/ncbddd/childdevelopment/screening.html#references

 

What is a Medical Home?

A medical home is a partnership between you and your child’s doctor that makes sure your child is getting the best possible care.

It is not an actual place or building you can go to. The word home means that you have a “home base” for your child’s health care needs.  The medical home concept has been growing more and more in the last few years and creates a coordination “team” around the medical needs of your child.

The place where you usually take your child for health care can be your child’s medical home.  Medical homes don’t happen right away and don’t always look the same. No matter who provides coordination a medical home provides support for your child and help for you as the parent or guardian in the coordination of care. If you would like to work on creating a medical home for your child often the first place to start is with your child’s primary care physician to see if they are familiar with how to coordinate care around your child. Some families have medical homes built through a specialist’s office, some a primary care pediatrician, and others who are on Medicaid can have that coordination through a managed care patient care specialist.

When choosing a provider to help you create a medical home here are some tips to consider:

  • Their willingness to negotiate and respect your input and decisions
  • That your child’s best interest is at the heart of their care and that the family’s dynamics are taken into consideration when a care plan is put into place
  • Your provider has at least some experience with your child’s condition. The relationship of the provider with your child is the most important element.
  • Open communication so that you and your doctor can make decisions together and that you are recognized as the expert on your own child’s care

It is important that the provider you consider also work well with the other members of your child’s care team and that they are willing to communicate and share information. You and your child’s providers should make decisions together calmly and information should be shared with all members of the team. A willingness to work with supports inside and outside the medical profession is also something to think about. A physician that is willing to work with a school and advocate for the child’s needs in a school environment goes a long way in setting up a strong IEP or 504 education plan.

When working with a provider understand that respect is a two-way street. Working with complex needs can be frustrating and scary and just because someone is a physician doesn’t mean they have all the answers. Asking questions and letting your provider know that you don’t understand their decision or don’t agree with their decision can be done respectfully and can help to build a strong line of communication if it is done with respect. You are the driver of your team so it helps to come from a place of respect.

It also helps to respect the time utilized in appointments as well. Be sure and let the office know ahead of time if you need more time in an appointment and write out your questions and concerns ahead of time. If you have a teenager or young adult start having them write out their questions and needs as well so that they become a part of the team in managing their own care.

I know it seems like a lot of work but there are a great deal of reasons why a medical home is of benefit. Some of these reasons include:

  • Help in the early identification of special health care needs
  • Provides ongoing primary care
  • Ongoing coordination with a broad range of other specialty services
  • Your child’s doctor can help you find more medical services for your child
  • More cost effective
  • Your doctor will get to know your child’s needs better
  • Your child will get better healthcare because you and your doctor have a partnership
  • Information is shared between you and your child’s doctors
  • You and your child’s providers can build a relationship
  • Fewer visits to the emergency room and hospital when problems are found more quickly
  • Lower long-term health care costs

Family can be a constant in many children’s lives. They know the history of the child and they will be there in the future. Bringing a trusted medical provider into that circle to help with the coordination and care of your child frees you, as a family, to look beyond the need to juggle the many complex issues of caring for a child with special healthcare needs. A medical home can spread the burden of coordination and decision making between many hands and can keep everyone on the same page. This alone can be worth the extra work that you may face in beginning.

There are some great web resources around establishing a medical home both at national and state sites and you can access them below.

American Academy of Pediatrics

Bright Futures

Washington State Medical Home

Medical Homes Checklist

  1. You are valued and acknowledged as the expert on your child.
  2. You are the central member of your child’s health care team.
  3. There is respect and trust between you and your child’s Doctor.
  4. Your culture and religion are valued.
  5. Your doctor shows effort and interest in learning about your child’s healthcare and other needs
  6. Your child receives his or her shots, well child visits and urgent care (when needed).
  7. You receive help and support when finding specialty care and community services.
  8. Your child’s doctor provides helpful information to other people involved in your child’s healthcare and helps you manage your child’s care.
  9. If your child has special healthcare need you feel supported.
  10. You are given helpful information to help you learn about your child’s health care concerns
  11. Your doctor helps you understand the choices for your child’s treatment.

Inclusion Vs. Self-Contained Opportunities for Students in School

Debate continues even today on whether students should be educated in inclusive programs or self-contained programs.

When looking at the Individuals with Disabilities Education Act (IDEA), the law never uses the word “inclusion,” instead the law refers to “Least Restrictive Environment” or LRE.

For some students LRE cannot be achieved in a fully “inclusive” classroom. There are a number of reasons based on the individual needs of the child.  For instance, in a fully inclusive classroom the level of stimulation may be too high, the classroom size may limit the student’s ability to gain the knowledge they need or there are language barriers.  If a student is deaf and uses sign language, for example, the inclusive class may not have the ability to allow the student to “communicate with their peers in their language or mode of communication.”* However, opportunities for people with disabilities to be educated with their non-disabled peers to the greatest extent “appropriate” for the student with the disability is an essential part of the law. There is the expectation that the student with disabilities is a general education student first. Therefore, removal from the general education environment should only occur when it is determined that even with appropriate aids and services the student will not benefit.

So how is all of this decided and is there a blanket process? The answer is no. Each child’s program and services must be decided on an individual basis. The decision is not “one size fits all’ nor is it a decision that is only made once and then continued for the rest of the student’s educational career. The IEP (Individualized Education Program) Team must consider the student’s placement each year as they review the IEP and develop the new goals. Only after the goals have been created should placement be discussed. Placement does not drive services, but services drive placement options. This means that the parent needs to be a large part of the team discussions and, as appropriate, so should the student. The IEP team should consider the many factors that can have an impact on the quality of the education the student will receive.

To address these different factors the IEP team may wish to consider the following questions:

If the student is going to be in an inclusive class setting:

  • Is the learning environment able to support the child’s academic needs? For some students, the need for more specialized instruction may make learning in the inclusive environment more difficult unless supports are put in place to assist in that instruction.
  • Can the child sustain attention among the 25 to 30 students in the classroom? Classes can be large, especially as students get older, and such increases in student count can cause some students to become anxious or to lose the ability to stay focused. The need for accommodations, such as sitting at the front of the classroom or wearing earplugs, may be needed to support the student.
  • What are some of the unwritten “social skills” that a student is expected to follow and how will the learning of social cues be provided? Social skills are an area that has long been challenging for some people with disabilities. If they have not had the opportunity to learn the social cues they are at a disadvantage that can cause difficulties in learning. Some have the opinion that social cues and social skills need to be a part of the learning environment, not just for students with disabilities, but for all the students.
  • What opportunities will be made possible for the child to display their newly learned skills in different settings or with different people? Studies show that until a skill can be demonstrated in more than one setting, it is not truly learned. Therefore, when considering the inclusive environment, opportunities to demonstrate new skills should be available in different settings.
  • How will the team know if the child is gaining the needed skills outlined in the IEP? Measurable goals require the ability to show data and track progress. When considering goals in an inclusive setting the data collection should not be overlooked. The goals need to be well defined and the tracking needs to be done on a consistent basis using measurements that are understood by all.

If the team is considering a self-contained environment they may wish to consider the following questions:

  • Is the learning environment able to support the child’s academic needs?Research has shown that students who are educated in separate settings from those of their peers without disabilities, have greater learning gaps as they get older. The expectation for learning can be decreased because the student is not challenged at the same level that their peers in the general education setting might be. So, it is important to consider whether the child is being appropriately challenged academically. The team may want to look at the learning objectives for all students of that age or grade and then consider how they can adapt or address those learning objectives in a manner that will support the student.
  • Is the teacher able to address the varied needs of the all the students in the classroom? Many times, a self-contained setting will have students with a wide-range of ages and learning needs. While in an inclusive classroom students will have varied learning styles and skills, the expectation is that the students will all receive instruction in a universal manner that addresses those different learning styles. In the self-contained setting there is still the need for the learning strategies to be universal in their design to provide the greatest opportunity for the student to gain the expected skill.
  • Is there ample opportunity for the student to practice the new skills they have learned? Just as in the inclusive setting, students need the opportunity to test their knowledge and skills with different people and in different environments. If the self-contained setting does not provide for opportunities to test these new skills, it may limit the child’s learning.

The options are there for parents to consider. The questions and how they are answered may help determine the approach that is used to support the student. Remember, that while students with disabilities are to be considered general education students first, it doesn’t mean that the need to look at the full range of placement options shouldn’t occur. The decisions will be made by the team with the expectation that all decisions are based on what is appropriate for that student at that time.

Websites used for this article:

Inclusion vs. Self- Contained Education for Children with ASD Diagnoses

Mainstreaming and Inclusion Vs. Self Contained Classrooms: https://prezi.com/4-eoazdwxtey/mainstreaming-and-inclusion-vs-self-contained-classrooms-for-special-needs-education/

Wisconsin Education Association Council: http://weac.org/articles/specialedinc/

IDEA – http://idea.ed.gov/explore/view

 

Positive Behavioral Interventions & Supports (PBIS) in Schools

By Kelcey Schmitz, MSEd
Center for Strong Schools
University of Washington Tacoma

We wouldn’t exclude, humiliate or send a child home for making an academic error.

However, when it comes to misbehavior, a typical response has been to punish or wait until the behavior escalates or occurs at a high rate or intensity before intervening. But this is changing. The direction of discipline is moving from reactive, punitive and exclusive measures to more positive, proactive and preventative approaches.

According to the National Technical Assistance Center on Positive Behavioral Interventions and Support (PBIS) (www.pbis.org), over 21,000 schools (elementary, middle, high) across the nation are implementing PBIS. As a result of using the same methods for teaching academics to students for behavior, schools report a decrease in problem behavior, an increase in instructional time, an increase in perception of safety, more positive school and classroom environments and an increase in student achievement. Taking an instructional approach to behavior is much better than waiting for problems to occur.

Positive Behavioral Interventions and Supports (PBIS)

PBIS offers an alternative to traditional discipline methods. Evidence shows that harsh and punitive responses do not change behavior for the long term and may even contribute to the erosion of relationships between students and adults. Creating a positive climate and culture contributes to parents, students and staff feeling happier about the school environment and strengthening the bond between teachers, students, and families

PBIS is a framework schools use to organize behavior supports for students. Much like the public health model, PBIS emphasizes prevention instead of waiting for problems to happen. The practices and programs range in intensity and duration depending on the level of behavior.

Just like many health issues and diseases are preventable, there are many ways adults can prevent student problem behaviors.  Many students will respond to Tier 1 prevention strategies.  In fact, we expect 80% of students to be successful in Tier 1. Twenty percent of students will need additional support in the form of Tier 2 and Tier 3 supports.

Tier 1

To effectively implement PBIS, schools identify a team that is representative of the staff in the building to learn the steps. This team, with frequent input from their colleagues, students and families, create a school wide (Tier 1) PBIS plan. The first step the team takes is to establish 3-5 positively stated expectations or pillars. Some common expectations are “be responsible”, “be respectful”, “be kind” and “be safe.”

Next, they identify a few “hotspots” throughout the school where misbehavior happens frequently. For example, teams may conclude that the hallways, cafeteria or playground are good places to start. They generally pick two locations to get “quick wins.” Lesson plans, or “cool tools”, are developed expected behaviors for each setting are explicitly taught to students. Students are taught what being respectful looks and sounds like in the classroom and non-classroom settings and then are provided opportunities practice.

Every adult that interacts with students (i.e. nutrition services, transportation, custodians, teachers, para-educators) are trained on the specific effective practices. This way, no matter where students are, they are getting consistent, predictable and positive messages.

Students are acknowledged with specific positive feedback for showing the appropriate behavior.  Positive feedback is an essential component of PBIS. Some schools pair feedback with a ticket and students can turn in their tickets for drawings or save them up and spend them at a school store or exchange them for things like school dances, VIP seating at an assembly or a front of the lunch line pass. It is most effective that for every corrective statement, four positive statements must be given. This is referred to as the 4:1 ratio.

Another essential element of PBIS is using data to make decisions. Instead of being driven by tradition, emotions, or convenience to staff, regularly collected data is summarized and reviewed by teams. The types of data teams review include office discipline referrals, suspensions, expulsions, attendance, grades and even school nurse referrals. Office discipline referrals can give teams more detailed information about the problem behavior happening in school. This is called looking at the “Big 5” data (how often, where, when, why and by whom). Drilling down allows precise problem identification and more effective problem solving. It is one thing to say “the sixth grade boys are unruly” – but much more actionable if we can create a statement with the specific information such as “between 2:00 p.m. and 2:30 p.m. in the west hallway the sixth grade boys are using inappropriate language 15 – 20 times a day, motivated by peer attention.” Now the team can brainstorms solutions.

Regular review of data allows teams to identify problems early, before they become chronic. It is much easier to address a low-level behavior than behaviors that have been practiced over time.

It is expected that schools will take 2-4 years to fully implement their Tier 1 PBIS plan. Once a strong foundation is in place, the school begins to work on supports for students in need of more than what Tier 1 supports have to offer. In many cases, school teams are guided through the steps of the PBIS implementation process by an expert in the field either within their district or outside the district.

Tier 2 and Tier 3

Just like with academics, some students will need more instructional support for social behavior skills. Advanced tiers (Tier 2 and Tier 3) offer students more practice and feedback. Students with mild to moderate problem behaviors such as being off task, talking out, difficulty getting along with others, or not following directions are good candidates for Tier 2 supports. Some examples are the Behavior Education Program, a modification of Check-in/Check-out, social skills instruction, and homework club. A few students will still need very intensive support, or Tier 3, for chronic challenging behavior. Tier 3 supports include a functional behavior assessment and behavior intervention plan and may involve a wraparound or person-centered plan, as well. A professional with substantial behavioral expertise often provides the Tier 3 supports and services.

Get Involved

Ask your school if they have a PBIS plan. A fully implemented plan involves family input and involvement and there are many other ways you can support PBIS.  For example, families can use the same expectations and apply them to home settings such as morning, homework and bedtime routines. The common language and an instructional approach to behavior provide the much-needed consistency, predictability and positivity kids need across all learning, living and leisure settings.

Find more information:

Office of Special Education Programs Technical Assistance Center for PBIS

When Having a Medical Action Plan is Mentioned, Do You Think of your Child?

When is a Medical Action Plan necessary and do I need more than one?

In a school setting a medical action plan is required if your child has a life-threatening illness or a condition (Asthma, cardiac, seizure disorders, food allergies) and/or require giving out medication and medical monitoring (Diabetes, complex on going medical needs, mental/behavioral health). Many school districts have asthma, epi pen, food allergy, and seizure disorder specific medical action templates and a general one for all other needs. It is important to contact your school nurse before the school year starts to see where you can get the templates and to see what documentation you need. Some districts also require a Doctors input or signature, especially if medication is involved. It is good to schedule a doctor’s visit in late July or August to help fill out the action plan so that you can get any input and signatures you may need.

It is good to meet with the school nurse and the staff working with your child to go through the action steps of an emergency if your child has an active, life threatening condition such as cardiac, seizure, severe asthma, or anaphylactic shock allergic reactions. In middle school and high school, it is important to have the student be a part of this meeting so that they can express what their triggers may be and what it looks like when they have an episode. Often it is not stated when to call 911 so be sure to be clear about stating the circumstances that require the 911 call and make sure it is written into the action plan. Many specialists and pediatrician also have premade action plan that they can run off and you can attach to the district templates so be sure and ask your child’s provider.

Please note, a Medical Action plan is not a 504 plan.  Click here to learn more about what a 504 plan is all about

Below are links to guide you:

Diabetes Management Plan

Asthma Action Plan

Emergency Care Plans

Five Action Plans Templates for Schools

A second medical action plan is the one you have for home and travel. This action plan pulls all of the medical information together in a file or note book for your child or youth. Inside of this you will put the diagnosis, the medications, emergency contacts, and other pertinent information. It should also contain information on what an emergency looks like and what steps to take to deal with it. This will reflect your medical action plan at school but should talk about the steps taken at home, other people’s house, or in the community. An “information at a glance” sheet is a good piece to put on your fridge for first responders to grab in an emergency. This sheet can also be used when you or your child are out in the community