Tag: parenting
Genetic Testing: Parents Face Many Choices
A Brief Overview
- More than 1,000 genetic tests are available. Whether to test is voluntary, and families can consider how the testing might impact social and emotional well-being.
- Genetic testing is available at various ages and stages through the lifespan. Read on for information about options from pre-birth through adulthood.
- A directory from the National Society of Genetic Counselors provides a place to seek information and support.
- The Genetic Information Nondiscrimination Act (GINA) protects individuals from genetic discrimination. The National Human Genome Research Institute, (NHGRI) provides information about GINA.
Full Article
Genetic testing can provide information about changes in chromosomes, genes, or proteins that might impact a person’s health, development, or ability to respond to certain medical treatments. Testing is available from pre-birth throughout the lifespan.
A genetic test can confirm or rule out a suspected genetic condition or determine whether someone might develop a medical condition or pass on a genetic disorder to a child. More than 1,000 genetic tests are currently in use, and more are being developed.
Testing is voluntary and personal. Families can discuss with providers whether information found through testing might help with choice-making or whether the testing might cause stress. A geneticist or genetic counselor can provide guidance about the pros and cons of the test and discuss the social and emotional aspects of testing.
According to the National Institutes of Health (NIH), the three common methods for genetic testing include:
- Molecular tests, which look for markers that might identify small variations or mutations in the structure of a person’s cells.
- Chromosomal tests, which analyze whole chromosomes to see if large genetic changes, such as an extra copy of a chromosome, may cause a genetic condition.
- Biochemical tests, which analyze proteins to determine any abnormalities that might indicate a genetic disorder.
Genetic testing often involves a small blood sample or a cheek-swab that is sent to a medical lab for analysis. A medical provider or genetic counselor usually shares and interprets the results. Patients also can ask for lab results to be mailed directly to the home.
When deciding about genetic testing, families generally start with a reason to wonder if there might be a problem. A child may have a medical diagnosis, or someone else in the family may have suffered from a condition related to a genetic abnormality. Regardless of the reason, families may face choices at various ages and stages of the development. Here are a few examples of genetic tests that parents may consider:
Preimplantation Genetic Diagnosis (PGD)
PGD is provided when a mother chooses to become pregnant through a process of in-vitro fertilization, when the egg and sperm are introduced outside the woman’s body. The resulting embryo can be tested to ensure that only embryos free of genetic disorders are implanted into the woman’s womb.
Prenatal Testing
Genetic testing on the baby can be done inside the mother’s womb. Amniotic fluid or tissue is collected from the fetus. Because the tests introduce a potential for miscarriage, mothers often discuss risks and reasons for wanting the information before choosing.
Newborn Screening
The most common type of genetic testing is newborn screening. Typically, a baby’s heel is pricked within a day or two after birth. The blood sample can reveal genetic disorders that might be treatable early in life. Follow-up testing is sometimes needed for development of a care plan.
Diagnostic Testing
When a person is ill and doctors struggle to determine the cause, genetic testing can sometimes assist with diagnosis. Genetic information may impact the course of ongoing treatment.
Presymptomatic Testing
If a family member has been diagnosed with a genetic disorder, other relatives may wish to be tested to identify any risk. For example, certain genetic markers indicate a tendency toward a specific cancer or heart condition. Finding a gene that increases the chances of developing a disease may help patients make medical or lifestyle decisions.
Carrier Testing
Certain families or ethnic groups carry genetic markers for specific impairments. If both parents carry a marker, they may pass it on to their children. Knowing this through testing can inform parenting decisions.
Pharmacogenomic Testing
Genetic markers can provide information about how certain medications are metabolized. Knowing how a person might respond to medications removes some of the guesswork. Genetic testing is increasingly common for individuals with mental health diagnoses.
Research Genetic Testing
By studying how genetics impact health and development, researchers expand knowledge about what can happen and how the medical field might respond.
What are the costs?
Basic genetic testing can cost $100-$2,000. A more complex diagnosis can cost more. Whether insurance pays may depend on whether the test is being recommended by a provider. Most policies cover newborn testing.
Test results may arrive in a few weeks or take several months. Prenatal tests generally are completed more quickly. A genetic counselor or medical provider can provide more precise detail about expected costs and timing.
Some people worry that genetic testing could impact healthcare coverage. The Genetic Information Nondiscrimination Act (GINA) intends to protect individuals from genetic discrimination. The National Human Genome Research Institute, (NHGRI) provides information about this law.
According to the Institute, “Many Americans fear that participating in research or undergoing genetic testing will lead to being discriminated against based on their genetics. Such fears may dissuade patients from taking genomics-based clinical tests or volunteering to participate in the research necessary for the development of new tests, therapies, and cures. To address this, in 2008 the Genetic Information Nondiscrimination Act (GINA) was passed into law, prohibiting discrimination by employers and health insurers.”
Emotional costs of genetic testing can be complex. Finding out the results of a genetic test can cause anxiety, anger, guilt, or depression. A genetic counselor can help with decision-making. A directory from the National Society of Genetic Counselors provides a resource for finding support.
Relatives Raising Children Face Unique Challenges
Imagine a knock on the front door at night. Outside is a police officer, bringing a child to the safe-haven of a grandparent’s home. A grandparent might experience fear and confusion, trying to reconcile what has happened in the family and how to support the child. This is how a journey toward kinship care can begin.
May is Kinship Awareness Month, an opportunity to acknowledge relatives other than parents raising children. Nearly 50,000 family members in Washington are kinship caregivers. Many of the children in their care have experienced trauma and need special education or uniquely designed physical- or mental-health services.
Relatives who provide kinship care can qualify for state support. The Washington State Department of Social and Health Services (DSHS) provides a resource guide about kinship care that includes information about benefits and services, health care, legal issues and more. DSHS manages the kinship program as part of its Aging and Long-Term Support Administration (ALTSA).
Reasons that relatives other than parents raise children vary. Some family members are granted custody by courts involved in the child welfare system. In other circumstances, law enforcement places children with relatives after finding parents unfit. Parents may have died, or a relative may have intervened because of issues related to addiction or abuse. Some kinship caregivers are meeting a grandchild, niece, or nephew for the first time when that child needs a new home.
A child might arrive without any possessions. The financial cost and life disruption can significantly impact the relative providing kinship care. In Washington, the Kinship Navigator program can help. This program was adopted by the state in 2003.
A Kinship Navigator can direct family caregivers to a variety of community resources related to healthcare, finances, legal services, support groups, training, child care and emergency funds. Kinship Navigators also can explain how to apply for federal and state benefits. The Kinship Navigator helps families establish or maintain greater self-sufficiency and long-term stability, often with a goal to keep children out of foster care.
A navigator can help family caregivers get involved with support groups and learn to balance the needs of the child with a potentially complicated relationship with the child’s parents. Daycare options can be located, and children might gain access to recreational and social activities to help them find belonging in a new life circumstance.
In spring 2019, Governor Jay Inslee signed into law Senate Bill 5641 to create a statewide kinship care legal aid coordinator. The state budget was expanded to include $500,000 for growth of the Kinship Care Support Program and $468,000 to fund Tribal Navigators for Native American families. One of the bill’s supporters was Rep. Eric Pettigrew, who in 2002 helped create a statewide Kinship Care Oversight Committee that led to development of the state’s kinship programming.
The Seattle Times published an article Dec. 28, 2018, about kinship care and reimbursement rates in comparison to foster care. According to the Times, about 43,000 relatives other than parents are raising children in Washington State. More than 90 percent of those caregivers are grandparents. The article includes data that most families choose not to become legal foster parents because of state scrutiny over the welfare system. Informal kinship-care arrangements are four times more common than formal foster care.
Generations United, a Washington, D.C.-based nonprofit, collects data about government costs and savings related to kinship care. The agency coordinates projects to strengthen intergenerational connections and offers ways for families to advocate for system improvements to benefit children, youth and older adults.
The Military Parent Technical Assistance Center, The Branch, provides specific guidance about benefits and other issues that impact short- and long-term kinship caregivers in military families.
Parents as Team Partners: Options When You Don’t Agree with the School
A Brief Overview
- Not every meeting with the school ends in agreement. This article provides information about what parents can do when they disagree with decisions made by the school.
- When parents disagree with a school’s recommendation, they may need more information and time to organize ideas and priorities to prepare for a meeting. Read on for ideas about how to find common ground and resolve conflicts.
- Read PAVE’s companion article, Get Ready for Your Meeting with a Handout for the Team.
- Support for Washington State parents is available from PAVE and the Three O’s: OSPI, OEO, OCR. Read on to know what the O’s can do for you and for links to information from these important agencies.
- Read on to learn more about these dispute resolution options: Facilitated IEP, Mediation, Resolution Meeting, Due Process and Citizen Complaint.
Full Article
Parents partner with schools when they work together on a team to design and support an Individualized Education Program (IEP). The federal law that governs special education describes parent participation as a primary principle. However, not every meeting feels collaborative to every family. This article provides information about what parents can do when they disagree with decisions made by the school.
NOTE: PAVE has an article about the Individuals with Disabilities Education Act (IDEA) that describes key features in more detail.
Federal law has protected children in special education since 1975. Since the beginning families have been included as important school partners, with formal and informal options for disputing school decisions. When teamwork gets challenging, parents have options that are described in the “Procedural Safeguards,” an IDEA requirement.
Do your homework to be truly prepared for a meeting
What are the options when a parent disagrees with a teacher, evaluator, specialist, school district representative, or principal? Parents can start by understanding that their right to participate is protected by federal law, as described above.
Still, deciding when to challenge a school’s recommendation can feel overwhelming. Clearly, parents want the very best for their children. It can help to remember that schools want the best for children also. Seeking common ground at an IEP team meeting is the place to begin. Asking questions instead of aiming accusations can radically impact the direction of a conversation. Here are a few open-ended question starters:
- Help me understand…
- I’m wondering if you could explain to me…
- Here’s the problem from my point of view. What would you suggest…
- Is there another way to look at this problem?
The IEP team meets at least once a year to review progress and set goals for the next year, but parents or school staff have the right to request an IEP meeting any time they have concerns that the program isn’t working.
Being fully prepared for a meeting can help parents move the team toward outcomes they seek. See PAVE’s companion article about how to prepare a handout for a meeting.
Define the problem and set a goal
To problem-solve as a team member, it helps to first define the problem and consider what outcomes are most important. Parents can get overwhelmed by emotion. Contemplating that energy and time are limited can help parents set priorities and spend their resources on what matters most—usually a child’s health and success!
Preparing for a meeting with the school might require some research:
- Is there a federal or state requirement that you need to understand? PAVE’s website might have an answer, so look around in our Learning and School section.
- Is there a policy you need to read? Ask for copies of any relevant school or district policies or reports.
- Do you have the most recent copies of your child’s educational evaluation and/or the IEP document? Get copies and understand what’s in those documents. For example, if the child has an unmet need, it’s possible that a new evaluation is needed in order to set a new goal and establish skill-building with specialized instruction.
- Do you need better understanding of your child’s needs? Talk to providers and other experts and have them provide letters for the school. You can help the school team better understand your child’s needs in light of the circumstances of a unique disability.
- Learn to be an advocate AND help your child learn to self-advocate! Asking your child for input can help direct you and school staff toward what matters most.
Find resources and allies
PAVE’s team of Parent Resource Coordinators (PRCs) are available to help you prepare for a meeting with the school. Click Get Help on our website.
In addition to PAVE, support for parents is available from the Three O’s:
- OSPI–The Office of Superintendent of Public Instruction provides guidance about state policies
- OEO–The Office of the Educational Ombuds provides online resources and support to help resolve concerns
- OCR–The Office for Civil Rights can help with questions about equity and access
Preparing for a meeting with the school can include asking someone to attend with you. Having a trusted friend, provider, family member or another ally can help you track the conversation and keep your emotions in check. Ask that person to take notes for you.
At an IEP meeting the team can agree to adjust supports and goals, request additional evaluations, and work together with the student to improve outcomes and access. Going into that meeting with a clear plan and agenda can help parents direct the conversation.
Seek common ground
Even with good teamwork and great intentions, there will be times of disagreement. In moments where collaboration feels impossible, it can help to return the conversation to common ground. For example, a parent can remind the team that the student is skilled at something and look for ways to build on that skill to improve another area of need.
Parents can ask questions that are respectful and genuine. For example, “Given the expertise at the table, can someone help me understand a best-practice strategy to address this problem?”
Another idea is to return to the key issue—the child’s success or struggle. If a conversation gets off track and argumentative, a parent can redirect the conversation by asking, “Can we circle back to the most important issue, which is figuring out how best to help NAME successfully [do something specific]?”
Read your Procedural Safeguards manual and learn about your options
At official meetings with the school, parents are offered a copy of their Procedural Safeguards. This manual describes the rights of special education students and the process of delivery. The Office of Superintendent of Public Instruction provides a downloadable copy.
A national resource for information about parent rights is the Center for Appropriate Dispute Resolution in Special Education (CADRE). CADRE provides a resource that describes resolution options in a side-by-side comparison chart.
Here is a brief description of the different types of resolution meetings. Each title is a link to a resource with more information:
An impartial person assists the IEP team with communication and problem-solving by leading the work-group, which is focused on improving the Individualized Education Program and writing changes into the IEP document. The facilitator asks the team to clarify where they agree and where they disagree. IEP facilitation is provided at no cost to the parent, and the IEP team still makes all official decisions. The facilitator doesn’t have any influence and cannot make recommendations. The third-party facilitator is there to help the group clarify issues to see if they can agree on a program. The goal is to build common agreements and understanding.
This voluntary process brings parents and school staff together with a third-party trained in mediation, which is an intervention to help individuals find common ground and problem-solve. A mediator may have knowledge of special-education laws and services. The meeting is confidential: What happens in the room stays in the room and cannot be used later as evidence in a legal proceeding. However, the group may choose to sign a legally enforceable agreement that could be admissible in court. Sometimes families and districts agree to try mediation after a Due Process complaint is filed to attempt to resolve a conflict informally. Mediation is available at no cost to the parent, individual, or school unless a party chooses to pay for legal counsel. Mediation is not guaranteed to resolve disagreements.
A Resolution Meeting can be held during another dispute process and may solve the problem informally so that the other process is suspended. A resolution meeting is required within 15 days after a parent files a Due Process Complaint, which is a way to request a formal, legal hearing. If the school district does not hold the Resolution Meeting on time, a parent may ask the hearing officer or administrative law judge to start the hearing timeline. If held, the Resolution Meeting provides a chance for parents and schools to agree before decision-making authority transfers to an administrative law judge. Attorneys may attend, but schools cannot bring an attorney unless the family also brings a lawyer. If the family and school reach agreement, they can sign a legally enforceable document. The parties have up to 30 calendar days to work on a resolution before a hearing.
Due Process Complaint (Request for Hearing)
A Due Process Complaint initiates a legal process and is a way for a parent, student or public agency, such as a school district, to request a formal hearing before an administrative law judge. Due Process is the most adversarial of all the dispute engagement options and can impact a family’s ongoing relationship with the school.
This formal, legal process can address disagreements in many areas of special education. Here are some examples: identification, evaluation, educational placement or service provision. Schools are required to initiate Due Process if a parent formally requests an Independent Educational Evaluation (IEE) because of a dispute related to the school’s own evaluation or a refusal to evaluate, and the school refuses to pay for the IEE.
In most cases, a Due Process dispute in special education determines whether the school district is providing a Free Appropriate Public Education (FAPE) to a child who needs or is suspected of needing special education and related services.
The two sides are referred to as “the parties.” To request a Due Process hearing, one party submits very specific information, in writing, to OSPI and to the opposing party.
The due process hearing request includes:
- The full name of the student
- The address of the student’s residence
- The name of the student’s school
- If the student is a homeless child or youth, the student’s contact information
- A description of the nature of the problem, including facts relating to the problem
- A proposed resolution of the problem, to the extent known and available
Required forms and process are outlined in the Procedural Safeguards, and the school offers a copy to families at the beginning of this process. Until a Due Process decision is final, the child remains in the current educational placement. This provision is called “pendency” or “stay put.”
A written decision with findings of fact and orders is made by an administrative law judge and can be appealed to a higher court. The Individuals with Disabilities Education act (IDEA), requires that Due Process complaints be filed within two years of the date when a party knew or should have known of the problem. The written decision is issued within 45 calendar days from the end of the resolution period, unless a party requests a specific extension. The decision is legally binding. However, if a decision is appealed the resolution may be put on hold until the appeal is final.
Public funds pay for the hearing, the hearing officer/administrative law judge, and use of any facilities. Each party pays any fees due to attorneys or witnesses.
Expedited Hearing Request & Resolution Meeting
An Expedited Hearing follows the rules of Due Process but is used when parents disagree with:
- a school district’s discipline-related decision that affects a child’s placement
- a decision from a Manifestation Determination review, which is a meeting to decide whether a child’s behavior is related to his or her disability
Faster timelines require a Resolution Meeting within seven calendar days, unless the parties agree in writing to skip the meeting or use Mediation instead. The hearing schedule proceeds if the issue is not resolved within 15 calendar days. The hearing must be held within 20 school days of the date the request was filed. The decision is due 10 school days after the hearing.
Any individual or organization can file a complaint with the Office of Superintendent of Public Instruction (OSPI) to allege that a Washington school district or another public agency violated federal or state law related to special education. Regulations governing the development and content of an IEP are contained in the Individuals with Disabilities Education Act (IDEA, Public Law 108-446), and in the Washington Administrative Code (WAC 392-172A).
Citizen complaints are investigated by OSPI. Citizen complaints must be filed within one year of the alleged violation. OSPI issues a written decision within 60 calendar days of receipt with findings, conclusions, and reasons for the final decision. The response includes actions required to address the needs of the child or children related to the complaint.
The response may include timelines that specify calendar days or school days. Please note that “school days” will exclude weekends, holidays or any other days when school is not in session. Timelines for “calendar days” include all days, including weekends.
Good luck in your journey toward resolution!
Each of these options is available any time a parent or student disagrees with an action taken by the school. Getting well-informed and organized is key in any process. Start by clarifying how to direct energy and what the desired outcome will look like.
To get help and ask questions, parents can contact PAVE or one of the “Three O’s” listed above: OSPI, OEO, OCR.
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.
|
IDEA Part C |
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:
- Experience developmental delays, which are medically diagnosed to impact cognitive, physical, communication, social-emotional and/or adaptive skills
- 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:
- Have a qualifying disability in at least one of 14 federal qualifying categories
- Are significantly affected by that disability at school (“Significant Educational Impact” is determined with evidence and data)
- Require specialized instruction to overcome the barriers of that disabling condition
14 Disability Categories
- Autism
- Emotional Disturbance
- Multiple Disabilities
- Specific Learning Disability
- Visual Impairment / Blindness
- Deaf-Blindness
- Hearing Impairment
- Orthopedic Impairment
- Speech / Language Impairment
- Developmental Delay (ages 0-8)
- Deafness
- Intellectual disability
- Other health impairment
- Traumatic Brain injury
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:
- Please Ask is a three-minute video that shows the importance of referring infants and toddlers for early intervention.
- To learn about typical development, read the birth-to-6 pre-screening chart in English or Spanish
- Family Health Hotline: 1-800-322-2588. This statewide, toll-free number offers help in English, Spanish, and other languages.
- Families can call the local lead agency: Local Lead Agencies by County
- Early Learning Transition: When Birth-3 Services End
A Mother Shares her Personal Journey of Welcoming a Baby with Down Syndrome
By Elizabeth Paschich
The news that my son had Down syndrome came at a bad time. I was pregnant with our 6th child, and my husband and I were not on the same page about my pregnancy. Age 37, I qualified for extensive genetic testing that could identify the gender of my child at 11 weeks. I wanted to know—and to start planning for our new family member. I didn’t know the results would begin a different kind of preparation.
I got the news while visiting my younger sister in the hospital after she gave birth to her first baby, a girl. My doctor asked if it was a good time to call, and of course I said yes. He then told me that the test showed that my child had Down syndrome. He said he would refer me to Maternal Fetal Medicine for an ultrasound. He told me to store his number and to call any time with questions. Then he asked if I wanted to know my child’s gender and I said, “Oh, yes, yes I do.” He told me I was having a boy. I felt a tug in my chest; this was my first boy. I thanked him for his call and hung up.
There I was, in my sister’s hospital room, trying to figure out what to feel when I realized everyone was waiting for the news. I shook off any emotions and told them, “They think my baby has Down syndrome… but it’s a Boy!” No one knew what to say. I sat for a minute, my eyes fixed on that sweet baby girl. My other children were with me, and the youngest ones were so excited to know they were getting a baby brother. My oldest daughter asked a few questions and sat quietly with me on the ride home.
I felt completely alone. I didn’t call my husband because I felt like he wouldn’t say anything I needed to hear. I just wanted someone to tell me that everything was going to be okay. That night I shared the news with him, and this began an intense roller coaster of silence and arguing that lasted three days. I finally had the courage to tell my husband that he had a decision to make: Would he stay and support our family, or would he go? He opted to stay, but he coped with the news by staying in denial about the diagnosis of Down syndrome.
We went to our first ultrasound at Maternal Fetal Medicine, where they showed us the missing nasal bone and took some other measurements. They sent the results to my doctor, who reported that the baby also had a cyst on his brain that was considered normal and should fade in time. He gently told me that it wasn’t too late for other options. I briefly shared my husband’s desire to terminate the pregnancy because we already had so many children but that I just couldn’t. He asked me to give his number to my husband and to tell him to call if he had any questions or just needed to talk.
Each ultrasound provided new findings. As the months ticked by, we learned that our son had a pericardial effusion and some sort of calcification in his intestine. The 29-week ultrasound showed that the cyst was still there and identified a moderate dilation in his right ventricle and a moderate pericardial effusion. The 34-week ultrasound showed the same but with an increase in dilation and effusion; now they were talking potential Hydrops. I went for a fetal echocardiogram, which confirmed the ultrasound’s findings. My heart was heavy from worry, but I was beginning to accept that I was not in control. I opted out of the fetal MRI. Everything I read made these results even scarier. I had my last ultrasound at 38 weeks and learned that the cyst and effusion were still there but that the dilation had returned to normal.
Two days later I went into labor, which went quickly. My purple little guy was placed on my tummy, and he let out a cry. I was so thankful to hear him cry. Once they got him to turn pink it was time to try nursing and with a bit of effort he latched on. I started to cry because this meant I would know when he needed me, and I could feed him. He had an echocardiogram before we went home. The cardiologist felt confident that the few little holes identified in his heart valves would be stable enough to wait for re-examination at his one-month visit.
During that first month my son cried at appropriate times and, while it was challenging, he was nursing. At one month, the cardiologist told me that he didn’t need to see my son anymore. The holes were closing as expected, and the effusion was close to gone. In time his little blue feet regained their color and soon it was all just a memory. His development was a little bit slower than typical, but my son smiled, giggled, rolled over, crawled, stood up… and we celebrated. His sisters encouraged him, and we found joy in everything from his first giggle to his bowel movements. I never forgot what could have been, so we kept pressing on and encouraging him to be great.
While each ultrasound brought more anxiety about my child’s future, I used those moments to learn how to become what he would need me to be. I accepted that I was not in control of what was happening but that I could control how I thought about the experiences.
When Lincoln came into our lives, we had no idea that it would change our view of the world. We have a chance to teach and learn in every challenge we face. My family is learning sign language as a team. We are spending more time appreciating each other’s strengths, and we are teaching others along the way. When children ask questions about Lincoln, I have an opportunity to speak from love about my little guy before they have a chance to hear any other way. My son has the most contagious smile, and he continues to impress his therapists.
My son will be two this spring and he is standing on his own, walking with a walker, using multiple signs, and practicing with his voice constantly. He still ranks in the lower 25th percentile, compared with typically developing children, and we work with him daily to encourage his progress.
Has it been easy? Absolutely not! It has taken many therapy sessions and forced us out of our comfort zones. We have cried for him, and we have fears about his future. Being Lincoln’s mom has made me question everything about myself, but I wouldn’t change a thing. He is beautiful, loving, snuggly, smart, aware…. Above all else, he is my little boy.
In hindsight I am thankful for the way that every piece of our puzzle fell into place. This journey has pushed us to our limits and shown us that we can be okay. It gave us the opportunity to learn our boundaries, figure out what is worth fighting for, and that we are a team. I now advise others to open their minds and prepare for a new perspective on life. Your sadness is not wrong: It is real, and it will pass once you realize how much you have to celebrate.
Finding the Right Child Care Provider for Your Child
by Marcia Jacobs, Communications and Marketing Manager, Child Care Aware of Washington
Selecting a child care provider is one of a parent’s most important decisions. Your child may spend many hours with the provider you choose, and you want that playing and learning time to be well-spent.
All parents look for a provider who can offer basic health, safety and quality, but parents of children with special needs have additional considerations. The provider needs to be comfortable caring for the child in a unique set of circumstances and may need specialized training and materials. The child needs quality care but also a provider who can make the days fun!
How do you start your search?
Child Care Aware of Washington (CCA of WA) is a nonprofit organization that has been helping families find quality, licensed child care for almost 30 years. The referral services are free to families, and licensed providers are included in the database for free. Because providers don’t pay to advertise, the service is fair and not biased. Families can search online or contact a representative at the Family Center for help.
Families of children with special needs can call the CCA of WA Family Center, (1-800-446-1114) to find a child-care provider. The representatives at the Family Center will listen to what your child needs and then look through the database of Washington’s licensed child care providers based upon the following:
- Behavior Supervision/Supports
- Communication Supports
- Diapering/Toileting Assistance
- Eating Assistance
- Health Monitoring
- Mobility Assistance
- Medication Monitoring
- Nursing Care
- Physical Therapy
- Respiratory Supports
- Sensory Integration
- Specialized Equipment
- Vision Supports
Representatives from the Family Center also may be able to help families find financial help, if they qualify.
Child care providers may also be eligible for an increased subsidy for accepting eligible children with special needs.
Finding a licensed child care provider who meets your child’s unique needs may mean you have to look further than a few miles from where you live or work. Not all child care providers are prepared to care for all children. CCA of WA hopes to help you find the best fit for your family.
Organize Your Child’s Medical and School Documents with a Care Notebook
A Care Notebook is an important tool for parents of children with special medical and school needs. This “notebook” might be a three-ring binder, an accordion file or a portable file box; it’s a place where you gather and organize important paperwork. You can include business cards and contacts, a call log, a calendar, emergency/crisis instructions, prescription information, history, school programming and other important documents that relate to your child’s unique needs for support and care.
Your portable Care Notebook should be kept up-to-date, with the most current versions of medical or school programs. Older files and records can be stored at home for reference. An important element of your on-the-go notebook is a pull-out document that provides a snapshot of your child’s unique needs. Depending on your child’s needs, you might create multiple copies of this document or you might make different versions for easy sharing with daycare providers, school staff, babysitters, the emergency room, summer camp counselors (see PAVE’s article) or others who support your child.
If building a Care Notebook sounds daunting, don’t worry. Most people start small and try different approaches until they find the best fit. Here are a few ideas to help you begin.
- Choose a holding system that makes sense for your organizational style: notebook, accordion file, small file box…
- Identify and label the document sections by choosing tools that fit your holding system: dividers, clear plastic document protectors, written or picture tabs, color coding, card holders for professional contacts…
- Include an easy-to-access calendar section for tracking appointments.
- Include a call log, where you record the names (take time to spell full names correctly!) and phone numbers of professionals you talk to. You can take notes to create a written record of a conversation. You can also send a “reflective email” to clarify information shared in the call, then print your email and tape it into your call log to create a more formal written record of the call.
- Use clear plastic sleeves for single pages or a small notebook for easy-reference information to share with a caregiver in a new situation (daycare, doctor, camp, overnight, emergency room…) Mommies of Miracles has an All About Me template.
- Be creative! Use pictures, drawings, stickers… When appropriate, invite your child to participate.
- Use technology: A website called Health Deals provides linkages to 4 Top Apps for Organizing Your Medical Records.
Your child’s medical providers might help you write a care plan and can provide specific contact information, medication lists and emergency contact procedures for each office. Your school can provide copies of an Individualized Education Program (IEP), a Section 504 Plan, a Safety Response Protocol, a Behavior Intervention Plan or other documents. If your child is at a state supported daycare (on location or in-home), staff can provide forms for emergency procedures and contacts.
Many agencies provide online templates and information. Seattle Children’s Hospital, through its Center for Children with Special Needs, provides a downloadable Planning-Record-Keeping Care Organizer on its website.
The American Academy of Pediatrics sponsors the National Center for Medical Home Information and includes a care-planning tool on its resource pages for families.
A broader search, by simply typing Care Notebook into your website browser, provides access to a variety of tools that might be a good fit for your child’s specific diagnosis, age or situation. Swindells, an agency in the Providence Health and Services network, will send you a pre-filled binder by mail or you can download the pages (available in English and Spanish) to file in your own binder.
Your care planning tool can save time and provide easier access to information and resources as unique situations arise. This tool also can provide organized access to critical information if you apply for state services through the Social Security Administration, the Developmental Disabilities Administration (DDA), the Division of Vocational Rehabilitation (DVR) or others. For military families, a Care Notebook can make transitions and frequent moves easier to manage.
A well-established organization system can also help your child transition toward adult life. Easy access to a list of accommodations can ease that first meeting with a college special services office, for example, or provide a key set of documents for requesting employment supports through DVR. Easy access to key medical records can be the first step to helping your child learn what medications they are taking and advocate for an adjustment with an adult provider
Building a care notebook takes effort at first, but you will thank yourself when you have just what you need, when you need it. And get ready to share your awesome organizational skills, habits and tools with your child!