Tag: special needs

Self-Care is Critical for Caregivers with Unique Challenges

Posted on by Nicol Walsh

Consider that 20 percent of the population has a disability. That’s one-fifth of all people who need extra support! Caregivers for those high-needs individuals may experience compassion fatigue and stress at high levels. National Geographic’s film, Stress, Portrait of a Killer, provides an overview of the risks and includes a story of parents who care for a child with special needs (See Minute 38 for that section of the report). 

The way to manage chronic stress is consistent self-care. Here are ways to stay mentally and physically healthy. In other words, here’s how caregivers can pull on that oxygen mask first in order to be well enough to assist others!

1. Connect

Meet up with people who get what you are going through. Schedule coffee with another parent with similar challenges on a regular basis. Parents often find each other at school, but here are other ideas about where you might find one another: Special Olympics practice, Special Needs Parent-Teacher Association, extracurricular events. A local Parent-to-Parent network can help by matching parents with similar interests or by providing a regular parent-group meeting.  

2. Sleep

The body uses sleep to recover, heal, and process stress. Here are ideas if anxiety or intrusive thinking interrupts sleep: Turn off screens after 7 p.m.—or use a blue-light filter; find sleep-music beats or a hypnosis program online; drink a calming herbal tea, such as chamomile; journal to process thoughts before bed. For more ideas, visit Sleepfoundation.org.

3. Exercise

Go for a walk, practice yoga, swim, wrestle with your kids, chop wood, work in the yard, or have a living-room dance party. Moving releases feel-good body chemicals. Check out the Mayo Clinic for more information on exercise and stress.

4. Be Mindful

Mindfulness can be as simple as taking time to notice your breath and focus attention there. Other ways to focus the mind for a general calming benefit: meditate, color, work on a car, build something, do art, put together a puzzle. The key is to find a quiet place that feels nurturing and calming. For more resources, check out mindful.org.

5. Make Time

An overfull calendar or unscheduled chaos can take over the day. A carefully organized calendar, managed with realistic boundaries, can help: If someone requests time, the calendar clearly shows when a meeting is possible. Parents can set SMART goals for a day, week or month: Assess whether the goals are Specific, Measurable, Achievable, Relevant and bound by a clear Timeframe. PAVE’s article on SMART Goals can help parents manage time while learning about how to assist with educational planning. Another resource with time-management tools: calendar.com: Why Stress Management and Time Management Go Hand in Hand.

6. Seek Help

Respite care provides temporary relief for a primary caregiver. In Washington State, a resource to find respite providers is Lifespan Respite. Parents of children with disabilities can apply through the Developmental Disabilities Administration (DDA) to seek eligibility for in- home personal care services and to request a waiver for respite care. For further detail about how to access services, refer to wapave.org DDA Access video or Informingfamilies.org DDA services.

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

 

Early Learning Transition: When Birth-3 Services End

Posted on by Nicol Walsh

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?

Posted on by Nicol Walsh

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: