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American Association of People with Disabilities

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American Association of People with Disabilities

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The American Association of People with Disabilities works to increase the political and economic power of people with disabilities.

As a national disability-led and cross-disability rights organization, AAPD advocates for full civil rights for over 60 million Americans with disabilities. We do this by promoting equal opportunity, economic power, independent living, and political participation.

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The American Association of People with Disabilities is a convener, connector, and catalyst for change, increasing the political and economic power of people with disabilities.

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Our Mission

The Autistic Self Advocacy Network seeks to advance the principles of the disability rights movement with regard to autism. ASAN believes that the goal of autism advocacy should be a world in which autistic people enjoy equal access, rights, and opportunities. We work to empower autistic people across the world to take control of our own lives and the future of our common community, and seek to organize the autistic community to ensure our voices are heard in the national conversation about us. Nothing About Us, Without Us!

Who We Are

The Autistic Self Advocacy Network is a 501(c)(3) nonprofit organization run by and for autistic people. ASAN was created to serve as a national grassroots disability rights organization for the autistic community, advocating for systems change and ensuring that the voices of autistic people are heard in policy debates and the halls of power. Our staff work to advance civil rights, support self-advocacy in all its forms, and improve public perceptions of autism. ASAN's members and supporters include autistic adults and youth, cross-disability advocates, and non-autistic family members, professionals, educators, and friends.

What We Do

Our activities include public policy advocacy, the development of autistic cultural activities, and leadership trainings for autistic self-advocates. We provide information about autism, disability rights, and systems change to the public through a number of different educational, cultural, and advocacy related projects.
Click here to read about what we accomplished in 2020.
Position Statements

ASAN advocates specific policy positions on issues of importance to autistic people and others with disabilities. In so doing, we seek to ensure the meaningful involvement of autistic individuals in making policy at all levels, to promote a culture of inclusion and respect for all, to enforce the rights of autistic people to equal opportunity at school and at work, and to improve funding for community services and supports along with research into how they can best be provided.

Read our position statements here.
Read our Civil Rights are Disability Rights statement here.
Publications

ASAN's publications are available through this website and include books on self-advocacy, Autistic culture, and related topics, as well as reports and brief materials. Our reports and policy briefs discuss social issues of importance to the Autistic and disability communities, such as access to services and community living, while our books share self-advocate perspectives on a variety of issues and experiences.

Speaking and Consulting

Our speakers can customize their presentations to meet the specific needs of different audiences, including schools, businesses, and other groups. In addition, we provide consulting services to assist companies and agencies with including Autistic individuals in diversity employment programs and providing workplace accommodations. Contact info@autisticadvocacy.org for more information.

Corporate Information

ASAN was incorporated as a New Jersey nonprofit organization in November 2006 and was an all-volunteer group for the next four years. In January 2011, our application for 501(c)(3) tax-exempt status was approved, and we began receiving grants and hiring staff. Our national office is located in Washington DC.

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Our Mission The Autistic Self Advocacy Network seeks to advance the principles of the disability rights movement with regard to autism. ASAN believes that the goal of autism advocacy should be a world in which autistic people enjoy equal access, rights, and opportunities. We work to empower autisti

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iPad Apps for Learners with Reading/Writing Difficulties

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iPad Apps for Learners with Reading/Writing Difficulties

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Visor Card

The Visor Card is designed to be kept in a driver's visor to provide quick and helpful ways to communicate for individuals who are deaf, hard of hearing, or could have a traumatic brain injury, autism, or an intellectual disability. It includes Quick Communication Tips for professionals and is designed for individuals to touch pictures to express their wants and needs.
Download the Visor Card

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The Visor Card is designed to be kept in a driver's visor to provide quick and helpful ways to communicate for individuals who are deaf, hard of hearing, or could have a traumatic brain injury, autism, or an intellectual disability.

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National Organization for Rare Disorders

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National Organization for Rare Disorders

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National Organization for Rare Disorders

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NORD advances practical, meaningful, and enduring change so people with rare diseases can live their fullest and best lives. Every day, we elevate care, advance research, and drive policy in a purposeful and holistic manner to lift up the rare disease community.

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National Organization for Rare Disorders | NORD

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NORD is dedicated to supporting education, elevating care, advancing research, and driving policy for rare diseases

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If you are a parent/guardian or a person with a disability under the age of 21, apply for the Luke Stone Illumination Fund (LSIF) award!

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OUR TRUSTED PARTNER

In 2018, we reached out to the staff of WVABLE and Treasurer, John Perdue. They were instrumental in helping us to establish the LSIF and make this idea a reality. If you would like to learn more about how to sign up for a WVABLE account - check out their website at WVABLE.com. We would like to add that the staff at WVABLE have worked tirelessly to make WVABLE a success. Treasurer Perdue has offered his full support of this program and has been a dedicated advocate to advancing the well being of those with a disability.

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OUR TRUSTED PARTNER In 2018, we reached out to the staff of WVABLE and Treasurer, John Perdue. They were instrumental in helping us to establish the LSIF and make this idea a reality. If you would like to learn more about how to sign up for a WVABLE account - check out their website at WVABLE.com.

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Provides scholarships for adults with Down syndrome seeking post-secondary education, enrichment or vocational classes

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Ruby's Rainbow - Scholarships for Adult Students with Down Syndrome

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Ruby's Rainbow provides educational scholarships for college students with Down syndrome who are seeking post-secondary education to help them achieve their dreams of higher education while spreading awareness of their capabilities and general awesomeness.

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Parent and Family Digital Learning Guide

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Parent and Family Digital Learning Guide

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Share this Report

What can this guide do for you?

Your involvement in your child's education can lead to better learning results and outcomes. This "Parent and Family Digital Learning Guide" will inform you, as a parent or caregiver, as you monitor your child's progress as your child accesses and uses technology for learning.

This guide aims to help all parents and caregivers, including those who have limited experience with digital tools, those who are expert with these tools, and anywhere in between. Each section starts with foundational pieces and builds from there.

Making the most of this guide

1. Scan: Each section of the Parent and Family Digital Learning Guide can be read independently. Please scan the guide for content and resources that are most helpful to you.

2. Discuss: Find time to discuss the principles explained in the guide with your children. You can also use the questions at the end of each section to start conversations with teachers, school leaders, and other parents.

3. : Use the content of the guide to create resources to help your community better understand digital learning (checklists, social media content, or short video clips). Send us what you create and you just might be featured on our website or social media*. Send your examples to ED.Tech@ed.gov and use the subject line "Creating with the Parent and Family Digital Learning Guide.

* Sending examples to the Department would allow us to share them on its Department's websites and social media channels.

Other than statutory and regulatory requirements included in the document, the contents of this guidance do not have the force and effect of law and are not meant to bind the public. This document is intended only to provide clarity to the public regarding existing requirements under the law or agency policies.

Introduction

What should my child know and how do I know if they have learned it? How can I be sure that my child is progressing and getting the help they need? How should my child use technology for learning, and what technology is needed for my child's learning? What is the right balance of being online versus offline? How can my child stay connected with their friends and teachers? How can my child stay safe?

Parents, educators, and researchers have asked these questions for years; they are even more relevant in light of the effects of the COVID-19 pandemic.

Is technology the answer to all of these questions? No, of course not. Technology is a tool. Technology, when used appropriately, can empower learning, engage and motivate students, and help make learning interactive. Students can benefit from educational technology because it can personalize instruction and adapt to their strengths and weaknesses. Today's digital tools and resources support and enhance learning at home and in the classroom. In some cases, a student's engagement with educational technology can help them develop communications and technical skills for their futures.

Digital tools (such as devices, apps, and platforms) can enable multiple places for your child to learn, help you and your child set clear and easy to understand learning goals, and track progress. These tools can also help facilitate communication between you, as your child's primary educator, and your child's other teachers, allowing you to work together toward ensuring success. To take full advantage of the potential of digital tools, your child will need access to a device and the internet (at home and at whatever school option you choose for your child). You are also responsible for guiding your child on how to use technology safely and appropriately. This guide provides resources to help you fulfill that responsibility. While having multiple options for access, devices, internet connectivity, and digital tools is the ideal, it is not the reality for everyone. This guide focuses on empowering you with information and resources to improve your child's opportunity for successful and safe digital learning.

The following sections explain three distinct benefits of digital learning. Digital learning can help meet the specific needs of your child, monitor your child's academic progress, and connect you and your child with your school community and beyond.
Digital Learning
Digital learning is used throughout this guide to refer to learning that leverages digital tools and resources, regardless of where it occurs.

MEETING THE LEARNING NEEDS OF YOUR CHILD:

PERSONALIZED LEARNING

This section in 30 seconds

Technology and digital tools can help your child learn in ways that work for your child. These tools can help change the way content is presented and how learning is assessed. They can make instruction personalized based on what will help your child learn.

For decades, most American classrooms have taken a "one size fits all" approach to instruction, teaching to the average student and largely ignoring the uniqueness of each learner. Educational technology can move us toward meeting the needs of each student and providing support tailored to each student's strengths and interests.

To personalize learning, the learning experiences and resources provided should be flexible and should adapt to and build on your child's skills. You know your child best. Working with your child's teachers to help them understand your child's needs can contribute to their personalized learning. The sections below outline technology-based approaches that can help personalize your child's education.

Personalized learning is an educational approach that tailors learning experiences to each
student's strengths, needs, skills, and interests.

Digital tools can provide multiple ways to engage your child in personalized learning. Learners can be motivated to learn in different ways, and a wide variety of factors can influence learning engagement and effectiveness. These include:

relevance (e.g., can my child imagine using this skill outside of school?),

interest (e.g., does my child get excited about this topic?),

culture (e.g., does my child's learning connect to the culture they experience outside of school?),

language (e.g., do the assignments that are given to my child help build vocabulary, especially if English is not my child's native language?),

background knowledge (e.g., can this topic be connected to something that my child already knows and can build upon?), and

differences in how they process information (e.g., does my child have a disability such as a specific learning disability (e.g., dyslexia, dysgraphia, dyscalculia), or a sensory disability such as blindness or visual impairment, deafness or hearing impairment? Or does my child have a learning difference that is not a disability, but that affects the way my child processes or accesses information?)

Effective digital tools can help accommodate your child's needs and preferences. Here are five ways that technology can be used to customize learning:

1. Choose your preferred learning environment. Digital technologies allow learning to take place synchronously with others (i.e., at the same time with you, a teacher, or other students), asynchronously (i.e., not at the same time), or both (i.e., with a mix of live interactions and assignments completed independently by each student based on their own schedule and pace). Learning can be organized for individual, small group, and whole class interactions, which may appeal to different learners' needs and preferences. As you consider schooling options for your child, the examples below may help you consider how synchronous and asynchronous learning approaches and activities may meet the particular needs and preferences of your child.
Examples of Synchronous Activities

A scheduled class in a school or online.

Live video conferencing with interactive participation.

A scheduled online live chat session.

Scheduled times (e.g., office hours) when teachers or tutors are available.

Examples of Asynchronous Activities

Completing assigned work independently.

Viewing a playlist of videos.

Engaging with learning software or online educational materials at a time and sequence of the student's choice.

2. Uncover new learning opportunities. Many digital tools can support partner or group work and facilitate feedback from peers and teachers. Such applications can also help your child find new things to learn. For example, many sources of information are available online, such as from museums and libraries, historical sites, scientific laboratories, and other sources from the web that support curiosity, inquiry, and research. These tools can also help your child access digital books, simulations, games, interactive content, and online explorations. We have listed several examples in the resources at the end of this section.

3. Support creative expression. Your child can learn to use digital tools for organizing, researching, writing, publishing, and creating media on topics that are important and interesting. Such digital tools can be used to help your child creatively think through solutions to challenging problems while fostering their abilities to communicate, collaborate, and otherwise develop their creative skills. Students can also keep their own personal portfolios, a record of their learning, and a blog or journal including reflections on their goals and learning progress.

4. Provide fast feedback. Technology can offer real-time assessment of learning and progress to inform and guide your child as they work. Such feedback enables your child to self-monitor and gives you, and your child's other teachers, information to know how to provide effective support.

5. Provide multiple means of interacting with content. Learners differ in how they best access, process, and comprehend information. Your child may need or benefit from special supports, for example:

If your child has a sensory disability (e.g., blindness or deafness), or;

If your child has learning disabilities (e.g., dyslexia, dyscalculia, dysgraphia), or;

If your child has another health impairment (e.g., attention deficit disorder, attention deficit hyperactivity disorder); or

If your child is an English learner, or;

If based on your child's unique cultural background and experiences, they may benefit when content and resources are presented in a variety of ways.

Technology that your child with a disability may use, referred to as assistive technology, may include software and systems that translate text to speech or speech to text, closed captions, translation tools, and resources available in multiple media formats such as text, audio, and video. Some of this technology can present content in shortened or lengthened formats to accommodate students who have limited attention spans or other disability-related needs.

Under federal laws that prohibit discrimination on the basis of disability, websites and apps used in schools must be accessible or, if necessary, schools must provide equally effective alternate access.
Accessibility
The Office for Civil Rights (OCR) at the U.S. Department of Education has recognized this definition: "'Accessible' refers to information or technology that, at a minimum, affords a person with a disability the opportunity to acquire the same information, engage in the same interactions, and enjoy the same programs and activities as a person without a disability in an equally effective and equally integrated manner, with substantially equivalent ease of use."

Federal law also requires schools to provide support services for English learners: "Parents or guardians may choose for their child to receive services to learn English if their child is identified as needing these services. School districts and schools are required by federal law to provide these services. Schools must ensure meaningful communication with English learners."

Additionally, your child may differ in the ways that they can best demonstrate what they know. Your child may be able to express themselves well in written text but struggle with speech, or vice versa. Children may be able to show what they have learned through illustration better than following conventions of text on pages and margins. With the right tools and appropriate accommodations throughout the learning process, all students can have multiple means of accessing content and demonstrating content mastery.

Your child's personalized learning approach may also need to be addressed in your child's Individualized Education Program (IEP).6 The requirements for an IEP for eligible children with disabilities are contained in the Individuals with Disabilities Education Act (IDEA), and those same requirements do not apply to students who do not have a documented disability.

Guides with Tips and Tricks

Digital Tools

Instructional Activities

UNDERSTANDING YOUR CHILD'S PROGRESS:

COMPETENCY-BASED LEARNING

This section in 30 seconds

Your child masters content and develops skills at their own pace. Many children learn effectively when the support they receive is customized for each new skill. In a competency-based system, your child can be empowered to learn skills in a personalized manner and to take responsibility for and make more decisions in their own learning. As a result, your child may be more engaged and successful in their learning.

What is it? Competency-based learning (also known as performance-based, mastery-based, or proficiency-based education) is an approach in which the parent and teacher builds a structure around the difference in pace of each student. The learning is set up to help ensure that students progress after showing mastery of the skills and competencies. For example, rather than allowing only one week for all students to learn two-digit addition before moving on to a new topic, the expectation is that each student will be able to solve two-digit math problems using addition, and that they can work at their needed pace to demonstrate mastery.

In this approach, the learning environment supports the strengths, weaknesses, and unique abilities of each student who learns in different ways and at different paces. While each student is tracking their own progress, they are not alone in their learning. Students can work with their parents, peers and get support from members of their learning community. Technology can help parents and teachers provide the variety of support that each student will need to progress and help students know when they have gained a specific competency.

Goals of Competency-based Education at a Glance:

Your child progresses based on evidence of learning a concept, not the amount of time spent on that concept.

Your child is empowered to make learning decisions, including how to demonstrate what has been learned.

Assessment is a positive experience for your child and provides timely, relevant, and actionable information.

Your child receives different support based on their individual learning needs.

Strategies to ensure access for your child are embedded in the learning experience.

Expectations for learning are clear and measurable.

Why do some find competency-based learning beneficial? Competency-based approaches and systems value flexible learning environments where learning may happen at different times and in different spaces. The development of new skills can be independent of location, and students have the ability to pause or move ahead with their learning as needed.

Guides with Tips and Tricks

CONNECT WITH YOUR COMMUNITY AND BEYOND:

DEVELOPING PARTNERSHIPS

This section in 30 seconds

Students are more engaged when parents and families are involved in education. Using digital learning resources provides new opportunities for your family to develop a strong partnership with your school or education provider. Technology can help you and your child stay connected to your local community, your child's school and teachers, and other parents and children.

Social emotional support from your local community

Emotions and social relationships are essential components of learning. In a national survey of parents related to COVID-19, the top concern for parents during school closures is that their child is missing important social interactions at school and with friends. Schools provide counseling services and community spaces and can play a pivotal role in the social development and mental well-being of your child.

If your school is providing instruction virtually or your child is learning from home, technology can help support social connections. Consider these examples of ways technology can help. You and your child could:

Hold a video conference to stay connected to teachers and peers. Take pictures of their work or their creations and share them with their teacher or classmates. They can get to know their teacher and classmates better by exchanging pictures, stories, and special memories.

Practice writing by sending letters and e-mails to friends and relatives.

Set up virtual playdates for your younger child, and make sure your older child has time to talk with friends.

Set up video chats with grandparents and other family members.

Social connections can reduce the impact of stress while also helping children develop communication, problem-solving, and empathy skills. For example, time with friends can help your child build relationships and talk with others who understand and relate to their feelings.

Learning resources and support from your learning community

Staying connected to school and learning communities will help parents and families while better supporting their children in their learning environment moving forward. Two-way communication with your child and their learning community can be essential. Your child's school, district, or education provider's website may include important updates and information. Your child's teacher may post assignments online or communicate them through email. You may seek to establish lines of communication with your child's teacher or education provider to ask questions and exchange information through phone, email, text messaging, or other means.

Virtual communication can help you:

Better understand your child's progress and different subjects they are learning.

Learn about opportunities from device distribution to enrichment programs to exam preparation.

Know right away if your child's teacher or education provider has identified any issues, academic or non-academic.

Share what you know works best to support your child with their teacher or education provider.

Ways you and your child's teacher might use technology to facilitate connections and collaboration include:

Having your child share projects and essays by creating a website or photo gallery.

Providing opportunities for your child to share experiences, engage in digital class discussions and small group work, and support one another.

Providing avenues for your child to share questions, comments, and concerns that are related to instruction, as well as those related to how they are feeling.

Making space for informal connections and personalized support by regularly scheduling a virtual meeting with you, your child, or both of you.

Technology for two-way family and school connections include the school website, video conferencing, phone, text messaging, email, online office hours, and online surveys.

Learning resources and support from beyond your local community

Technology can give your child opportunities to engage in research and problem-solving activities and to share ideas and collaborate on projects with other learners beyond those in their local community.

Access to virtual learning schools

You may identify and pursue a virtual learning option that meets the needs and requirements of your child. This option may include full courses that are self-paced, access to a virtual classroom that provides teachers, content, and assessments, or some combination. If your child's school is closed or the options that it provides do not meet the particular needs of your child, a virtual learning option may provide access to what your child needs to continue progressing in their
learning.

Virtual learning
Virtual learning refers to online learning that takes place outside of the school or brings what is outside of the school into the school. It uses an online environment to connect students who may be physically located in one place with a course or learning opportunity located somewhere else.

Along with private virtual learning providers, some states have online K-12 schools that are operated by the state or district. These options can be helpful during school building closures and at other times that meet the particular needs and requirements of your child. Online schools may offer courses that your child may not otherwise have in their schools, and, if necessary, can also help your child make up credits to continue toward graduation.

Guides with Tips and Tricks

Digital Tools

To take full advantage of the benefits of digital learning, your child needs access to a personal learning device, such as a laptop, and access to the internet at home. While the hardware and software required on each device may vary based on your child's needs and their digital learning program, your child may generally need the ability to communicate reliably and safely with their personal learning device.

Ensuring access to a device and the internet can also facilitate a more seamless transition between school and home. Your child can access online platforms that record progress and provide digital learning activities and resources.

While having full access to devices and broadband connections is ideal, we know that isn't the reality for everyone. If your child has no device (or only a smartphone), limited internet access, or both no device and limited internet access, the sections below can help you find ways to obtain a device and connectivity for your child.

ENSURING YOUR CHILD'S ACCESS:

PERSONAL LEARNING DEVICES

You may have multiple options to access a personal learning device for your child:

Learn about available personal learning device options. There are multiple makes, models, and configurations of laptops, tablets, cameras, and software that can support digital learning. You, your child, or your school or education provider may maintain certain technical requirements and standards that affect your child's use of personal learning devices. Your school or education provider may or may not purchase personal learning devices for your child. Such devices may otherwise be made available to your child without cost or at reduced cost from your state or school district, from non-profit organizations, or from device manufacturers. Note though, that if your child has a disability and the device is required in order for your child to receive a free appropriate public education under the Individuals with Disabilities Education Act or Section 504 of the Rehabilitation Act of 1973, the device must be provided to your child at no cost to you and your child.

Learn about device distribution opportunities at your school or education provider. Reach out to your child's teacher or counselor to ask about access to a digital device, such as a laptop or tablet. Even if you already have a computer at home, each child should have their own reliable device so they can fully participate in digital learning when needed.

Get technical support. Ask your device provider, school, or education provider if and how they provide support setting up devices and thereafter. Your school or education provider may host virtual town halls or other events for parents and families.

Learning without a personal learning device. You may find opportunities for your child to learn without a device. Your child's teacher or local library may help you identify activities that your child can do without a screen so that your child can continue learning if a device is not available to them, and maximize meaningful use of screen time when a device is available.

ENSURING YOUR CHILD'S ACCESS:

INTERNET SERVICE

Streaming and downloading content and participating in video conferences requires a highspeed, reliable internet connection. Although many public spaces offer internet access, obtaining access at home is critical for supporting continuity of learning. If you do not have access to the internet to support your child's learning, some options may be available to you.

Discover school- or community-provided internet access. Some schools provide internet hotspots for students to check out, and some communities have open access to a community-based network. Check with your school and public library to learn about options in your community. The resources section below provides additional sources for finding internet access options in your community.

Learn about your internet access. If you already have service, make sure it can support the increased online activity and that you understand any data limits (if applicable).

ENSURING YOUR CHILD'S SAFETY, PRIVACY, AND RESPONSIBLE TECHNOLOGY USE

Know your rights and learn what information is being collected or shared about your child.

While federal, state, and local laws have been developed to protect your child's safety and privacy online, your child's safety and privacy also depends on your child's and the education provider's safe and responsible online practices. We offer the sections below as helpful places to start discussing internet security and privacy with your child, and to outline the federal laws that govern privacy and safety.

Security Settings

Turn on the security features on any device your child may use for learning activities. These can be found in the device's general settings under the privacy menu. These features can:

Restrict access to offensive or inappropriate content.

Require approval for downloads.

Limit time spent on certain apps.

For additional information on online safety concerns and ways of protecting your child online, see "Cyber Safety Considerations for K-12 Schools and School Districts."

Digital Citizenship

Talk with your child about how to be a responsible digital citizen. Remind your child that virtual communities are an extension of their classrooms and the same basic rules apply, such as treating others with respect. Let your child know that they should tell you, their teacher, or a family member if they or a classmate are being bullied or are worried about any troubling content, encounters, or activities online.

Password Management

Make sure you and your child have all the information to find their learning resources. Keep track of log-in and password information and URLs for each platform they use. Consider using a password manager in your internet browser, or keep passwords written down in a safe place. Change passwords regularly.

Video Conferencing

You may choose to talk with your child and your child's teacher if you aren't comfortable with your child using the video feature during virtual lessons. Many platforms allow you to use virtual backgrounds or images to protect the privacy of your home. If your child's teacher, school, or education provider plans to record a lesson or take screenshots during a lesson and you are uncomfortable, you may ask if your child can be off-camera or watch the recorded lesson later.

Privacy Policies

Keep in mind that your school or education provider may have different agreements with companies to protect the privacy of students, and checking with your school or education provider is always an important first step. Schools may use certain digital learning tools without your consent as long as the use of these tools aligns with state and federal law.

Federal Laws Governing Privacy and Safety: FERPA, IDEA, and COPPA

The Family Educational Rights and Privacy Act, known as FERPA, is a federal law that, among other things, generally prohibits FERPA-covered educational agencies (e.g., school districts) and institutions (i.e., schools) from disclosing personally identifiable information (PII) from the education records of a student without the prior written consent of the student's parent or the "eligible student" herself or himself (i.e., the student if he or she is 18 years or older or attends an institution of postsecondary education). 20 U.S.C. §§ 1232g(b), (h), (i), and (j), and 34 CFR Part 99, Subpart D. FERPA contains specific exceptions to this general consent requirement which are set forth in 20 U.S.C. § 1232g(b)(1)-(b)(3), (b) (5), (b)(6), (h), (i) and (j), and 34 CFR § 99.31. FERPA also generally provides parents and eligible students with the right to inspect and review their education records, and the right to seek to amend information in their education records that is inaccurate, misleading, or in violation of the student's rights of privacy. 20 U.S.C. §§ 1232g(a)(1)(A) and (a)(2), and 34 CFR Part 99, Subparts B and C. For more information regarding FERPA, please visit the U.S. Department of Education's Student Privacy Policy Office's website at https:// studentprivacy.ed.gov. Of note, the U.S. Department of Education recently released guidance to parents on FERPA in April 2020 titled, "The Family Educational Rights and Privacy Act: Guidance for Parents," which is available at https://studentprivacy.ed.gov/ sites/default/files/resource_document/file/FERPAGuidanceForParents.pdf.

The Individuals with Disabilities Education Act (IDEA) also contains confidentiality of information provisions that protect PII in the education records of children with disabilities. 20 U.S.C. § 1417(c) and 34 C.F.R. §§ 300.610-300.626. IDEA also generally provides parents with the right to inspect and review their child's education records, and the right to seek to amend information in their child's education records that is inaccurate, misleading, or in violation of the student's rights of privacy. IDEA's confidentiality provisions generally require parental consent for disclosure of PII in education records, to parties other than officials of participating agencies, and generally incorporate the FERPA exceptions to the prior written consent requirement. Note that the IDEA confidentiality of information provisions incorporate some of the FERPA requirements but also include several provisions that are specifically related to children with disabilities. More information about IDEA and FERPA confidentiality provisions is available at https://studentprivacy.ed.gov/resources/ferpaidea-cross-walk.

The Children's Online Privacy Protection Act (COPPA) generally gives parents control over what information is collected about their children online. Under COPPA, schools may, in certain circumstances, provide consent on behalf of parents to the collection of student personal information. The Federal Trade Commission recently clarified that "schools can consent on behalf of parents to the collection of student personal information-but only if such information is used for a school-authorized educational purpose and for no other commercial purpose. This is true whether the learning takes place in the classroom or at home at the direction of the school." More information about COPPA is available at https:// www.ftc.gov/news-events/blogs/business-blog/2020/04/coppa-guidance-ed-techcompanies-schools-during-coronavirus.

Guides with Tips and Tricks

Digital Tools

HOW TO FILE A DISCRIMINATION COMPLAINT WITH THE OFFICE FOR CIVIL RIGHTS

Educational institutions have a responsibility to protect every student's right to learn in a safe environment free from unlawful discrimination and to prevent unjust deprivations of that right. The Office for Civil Rights (OCR) in the U.S. Department of Education enforces several federal civil rights laws that prohibit discrimination on the basis of disability, race, color, national origin, sex, and age in programs or activities that receive federal financial assistance from the Department of Education. OCR also has responsibilities under Title II of the Americans with Disabilities Act of 1990, which prohibits discrimination on the basis of disability by public entities, whether or not they receive federal financial assistance.

Discrimination on the basis of disability is prohibited by Section 504 of the Rehabilitation Act of 1973 and, as noted above, by Title II of the Americans with Disabilities Act of 1990.

Discrimination on the basis of race, color, and national origin is prohibited by Title VI of the Civil Rights Act of 1964. This includes discrimination based on a person's limited English proficiency or English learner status; and actual or perceived shared ancestry or ethnic characteristics, including membership in a religion that may be perceived to exhibit such characteristics (such as Hindu, Jewish, Muslim, and Sikh individuals).

Discrimination on the basis of sex is prohibited by Title IX of the Education Amendments of 1972. This includes discrimination based on pregnancy, parental status, and sex stereotypes (such as treating persons differently because they do not conform to sex-role expectations or because they are attracted to or are in relationships with persons of the same sex).

Discrimination on the basis of age is prohibited by the Age Discrimination Act of 1975.

Anyone may file a complaint with OCR. The person or organization filing the complaint need not be a victim of the alleged discrimination but may file on behalf of another person or group. You may file a complaint by mail or fax with the appropriate regional office ( https://www2.ed.gov/ about/offices/list/ocr/addresses.html), by email ( ocr@ed.gov), or by using OCR's electronic complaint form ( https://www2.ed.gov/about/offices/list/ocr/complaintintro.html). Generally, a complaint must be filed within 180 calendar days of the date of the alleged discrimination. More information about OCR is available at https://www.ed.gov/ocr.

LEGAL DISCLAIMER

This document contains resources that are provided for the user's convenience. The inclusion of these materials is not intended to reflect their importance, nor is it intended to endorse any views expressed, or products or services offered. These materials may contain the views and recommendations of various subject matter experts as well as hypertext links, contact addresses, and websites to information created and maintained by other public and private organizations. The opinions expressed in any of these materials do not necessarily reflect the positions or policies of the U.S. Department of Education. The U.S. Department of Education does not control or guarantee the accuracy, relevance, timeliness, or completeness of any outside information included in these materials.

ENDNOTES

1. Morin, A. (n.d.). Personalized Learning: What You Need to Know. Understood. Retrieved from https://www.understood.org/en/school-learning/partnering-with-childs-school/ instructional-strategies/personalized-learning-what-you-need-to-know/

2. Unless otherwise noted this guide does not address schools' responsibilities to provide services or modifications to students with disabilities under the Individuals with Disabilities Education Act (IDEA), Section 504 of the Rehabilitation Act of 1973, or Title II of the Americans with Disabilities Act (ADA). Information about the IDEA is available at https:// osepideasthatwork.org/. Information about Section 504 and Title II is available at https:// www.ed.gov/ocr.

3. Section 504 of the Rehabilitation Act of 1973 (Section 504) and Title II of the Americans with Disabilities Act of 1990 (Title II).

4. Resolution Agreement: South Carolina Technical College System, OCR Compliance Review No. 11-11-6002.

5. English Learner Family Toolkit: Attending Schools in the United States. (2018). National Clearinghouse for English Language Learners. Retrieved from https://ncela.ed.gov/files/ family_toolkit/EL-Family-Tool-Kit-Attending-Schools-in-the-US.pdf

6. Note that a student's personalized learning approach may also need to be addressed through the services and modifications provided to students with disabilities under Section 504 of the Rehabilitation Act of 1973, 34 C.F.R. § 104.33.

7. The parents of a child with a disability have the right to request an IEP team meeting at any time to review the child's IEP and revise it, if appropriate.

8. Introduction to Competency-Based Education. (2020). Aurora Institute. Retrieved from https://aurora-institute.org/our-work/competencyworks/competency-based-education/

9. Kaufman, T. (n.d.). Family Engagement and Student Success: What the Research Says. Understood. Retrieved from https://www.understood.org/en/school-learning/foreducators/partnering-with-families/family-engagement-and-student-success

10. Immordino-Yang, M. H., Darling-Hammond, L., & Krone, C. (2018). The Brain Basis for Integrated Social, Emotional, and Academic Development. The Aspen Institute. Retrieved from https://assets.aspeninstitute.org/content/uploads/2018/09/Aspen_research_ FINAL_web.pdf

11. Learning Heroes. (2020). Parents 2020: COVID-19 Closures-A Redefining Moment for Students, Parents, and Schools [Webinar]. Retrieved from https://bealearninghero.org/ research/

12. Virtual Learning. (2020). Core Education. Retrieved from https://core-ed.org/researchand-innovation/ten-trends/2013/virtual-learning/

REFERENCES

English Learner Family Toolkit: Attending Schools in the United States. (2018). National Clearinghouse for English Language Learners. Retrieved from https://ncela.ed.gov/files/family_toolkit/EL-Family-Tool-Kit-Attending-Schools-in-the-US.pdf

Family Educational Rights and Privacy Act. (2020, April). Guidance for Parents. Retrieved from https://studentprivacy.ed.gov/sites/default/files/resource_document/file/FERPAGuidanceForParents.pdf

Federal Trade Commission. (2020). Children's Privacy. Retrieved from https://www.ftc.gov/tipsadvice/business-center/privacy-and-security/children%27s-privacy

Immordino-Yang, M. H., Darling-Hammond, L., & Krone, C. (2018). The Brain Basis for Integrated Social, Emotional, and Academic Development. The Aspen Institute. Retrieved from https://assets.aspeninstitute.org/content/uploads/2018/09/Aspen_research_FINAL_web.pdf

Introduction to Competency-Based Education. (2020). Aurora Institute. Retrieved from https://aurora-institute.org/our-work/competencyworks/competency-based-education/

Kaufman, T. (n.d.). Family Engagement and Student Success: What the Research Says.
Understood. Retrieved fromhttps://www.understood.org/en/school-learning/for-educators/partnering-with-families/family-engagement-and-student-success

Learning Heroes. (2020). Parents 2020: COVID-19 Closures-A Redefining Moment for Students,
Parents, and Schools [Webinar]. Retrieved fromhttps://bealearninghero.org/research/

Morin, A. (n.d.). Personalized Learning: What You Need to Know. Understood. Retrieved from
https://www.understood.org/en/school-learning/partnering-with-childs-school/instructionalstrategies/personalized-learning-what-you-need-to-know/

Schifferle, L. W. (2020, April). COPPA Guidance for Ed Tech Companies and Schools during the
Coronavirus. U.S. Federal Trade Commission. Retrieved fromhttps://www.ftc.gov/news-events/blogs/business-blog/2020/04/coppa-guidance-ed-tech-companies-schools-during-coronavirus

Virtual Learning. (2020). Core Education. Retrieved from https://core-ed.org/research-andinnovation/ten-trends/2013/virtual-learning/

ACKNOWLEDGEMENTS

This work was developed under the guidance of senior staff in the U.S. Department of Education, Office of Educational Technology, with technical support from Jessenia Guerra, Kevin Johnstun, and Maile Symonds, and contributions from Digital Promise and Learning Heroes.

The team extends their thanks to a Technical Working Group of education leaders and researchers who provided valuable insights and examples from their experience (listed in alphabetical order by last name):

Jose Blackorby, CAST

Jered Borup, George Mason University

Linda Burch, Common Sense Media

Jon Deane, GreatSchools

Bruce Friend, Pine Springs Preparatory Academy

Pete Just, Metropolitan School District of Wayne Township

Trynia Kaufman, Understood

Sarah Pottle, The New Teacher Project

Beth Rabbitt, The Learning Accelerator

Julia Rafal-Baer, Chiefs for Change

Justin Reich, Massachusetts Institute of Technology

Valerie Truesdale, American Association of School Administrators

Amelia Vance, Future of Privacy Forum

Casandra Woodall, International Society for Technology in Education

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Parent and Family Digital Learning Guide - Office of Educational Technology

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This guide will help you monitor your child's progress as your child accesses and uses technology for learning. It covers the benefits of digital learning and safety, privacy, and responsible technology use.

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Stories of successful employment and leadership opportunities for people with autism, intellectual and/or developmental differences.

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Families report a high need for information to improve their understanding of deaf-blindness (e.g., communication, impact of vision and hearing loss on learning), as well as the knowledge and skills they need to partner with educators and advocate for their childrens' needs (NCDB, 2017).

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An independent federal agency committed to disability policy leadership since 1978

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Helping Children with Learning Disabilities

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Helping Children with Learning Disabilities

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When it comes to learning disabilities, look at the big picture

All children need love, encouragement, and support, and for kids with learning disabilities, such positive reinforcement can help ensure that they emerge with a strong sense of self-worth, confidence, and the determination to keep going even when things are tough.

In searching for ways to help children with learning disabilities, remember that you are looking for ways to help them help themselves. Your job as a parent is not to "cure" the learning disability, but to give your child the social and emotional tools they need to work through challenges. In the long run, facing and overcoming a challenge such as a learning disability can help your child grow stronger and more resilient.

Always remember that the way you behave and respond to challenges has a big impact on your child. A good attitude won't solve the problems associated with a learning disability, but it can give your child hope and confidence that things can improve and that they will eventually succeed.

Tips for dealing with your child's learning disability

Keep things in perspective. A learning disability isn't insurmountable. Remind yourself that everyone faces obstacles. It's up to you as a parent to teach your child how to deal with those obstacles without becoming discouraged or overwhelmed. Don't let the tests, school bureaucracy, and endless paperwork distract you from what's really important-giving your child plenty of emotional and moral support.

Become your own expert. Do your own research and keep abreast of new developments in learning disability programs, therapies, and educational techniques. You may be tempted to look to others-teachers, therapists, doctors-for solutions, especially at first. But you're the foremost expert on your child, so take charge when it comes to finding the tools they need in order to learn.

Be an advocate for your child. You may have to speak up time and time again to get special help for your child. Embrace your role as a proactive parent and work on your communication skills. It may be frustrating at times, but by remaining calm and reasonable, yet firm, you can make a huge difference for your child.

Remember that your influence outweighs all others. Your child will follow your lead. If you approach learning challenges with optimism, hard work, and a sense of humor, your child is likely to embrace your perspective-or at least see the challenges as a speed bump, rather than a roadblock. Focus your energy on learning what works for your child and implementing it the best you can.

Focus on strengths, not just weaknesses

Your child is not defined by their learning disability. A learning disability represents one area of weakness, but there are many more areas of strengths. Focus on your child's gifts and talents. Your child's life-and schedule-shouldn't revolve around the learning disability. Nurture the activities where they excel, and make plenty of time for them.

Recognizing a learning disorder

By understanding the different types of learning disorders and their signs, you can pinpoint the specific challenges your child faces and find a treatment program that works.
[Read: Learning Disabilities and Disorders]

Helping children with learning disabilities tip 1: Take charge of your child's education

In this age of endless budget cuts and inadequately funded schools, your role in your child's education is more important than ever. Don't sit back and let someone else be responsible for providing your child with the tools they need to learn. You can and should take an active role in your child's education.

If there is demonstrated educational need, the school is required by law to develop an Individualized Education Plan (IEP) that delivers some educational benefit, but not necessarily one that maximizes student achievement. Parents who want the best for their kids may find this standard frustrating. Understanding special education laws and your school's guidelines for services will help you get the best support for your child at school. Your child may be eligible for many kinds of accommodations and support services, but the school might not provide services unless you ask for them.

Tips for communicating with your child's school

Being a vocal advocate for your child can be challenging. You'll need superior communication and negotiation skills, and the confidence to defend your child's right to a proper education.

Clarify your goals. Before meetings, write down what you want to accomplish. Decide what is most important, and what you are willing to negotiate.

Be a good listener. Allow school officials to explain their opinions. If you don't understand what someone is saying, ask for clarification. "What I hear you saying is..." can help ensure that both parties understand.
[Read: Effective Communication]
Offer new solutions. You have the advantage of not being a "part of the system," and may have new ideas. Do your research and find examples of what other schools have done.

Keep the focus. The school system is dealing with a large number of children; you are only concerned with your child. Help the meeting stay focused on your child. Mention your child's name frequently, don't drift into generalizations, and resist the urge to fight larger battles.

Stay calm, collected and positive. Go into the meeting assuming that everyone wants to help. If you say something you regret, simply apologize and try to get back on track.

Don't give up easily. If you're not satisfied with the school's response, try again.

Recognize the limitations of the school system

Parents sometimes make the mistake of investing all of their time and energy into the school as the primary solution for their child's learning disability. It is better to recognize that the school situation for your child will probably never be perfect. Too many regulations and limited funding mean that the services and accommodations your child receives may not be exactly what you envision for them, and this will probably cause you frustration, anger and stress.

Try to recognize that the school will be only one part of the solution for your child and leave some of the stress behind. Your attitude (of support, encouragement and optimism) will have the most lasting impact on your child.

Tip 2: Identify how your child learns best

Everyone-learning disability or not-has their own unique learning style. Some people learn best by seeing or reading, others by listening, and still others by doing. You can help a child with a learning disability by identifying their primary learning style.

Is your child a visual learner, an auditory learner, or a kinesthetic learner? Once you've figured out how they learn best, you can take steps to make sure that type of learning is reinforced in the classroom and during home study. The following lists will help you determine what type of learner your child is:

Is your child a visual learner?

Visual learners:

Is your child an auditory learner?

Auditory learners:

Is your child a kinesthetic learner?

Kinesthetic learners:

Studying Tips for Different Types of Learners

For visual learners:

Use books, videos, computers, visual aids, and flashcards.

Make detailed, color-coded or high-lighted notes.

Make outlines, diagrams, and lists.

Use drawings and illustrations (preferably in color).

Take detailed notes in class.

For auditory learners:

Read notes or study materials out loud.

Use word associations and verbal repetition to memorize.

Study with other students. Talk things through.

Listen to books on tape or other audio recordings.

Use a tape recorder to listen to lectures again later.

For kinesthetic learners:

Get hands on. Do experiments and take field trips.

Use activity-based study tools, like role-playing or model building.

Study in small groups and take frequent breaks.

Use memory games and flash cards.

Study with music playing in the background.

Tip 3: Think life success, rather than school success

Success means different things to different people, but your hopes and dreams for your child probably extend beyond good report cards. Maybe you hope that your child's future includes a fulfilling job and satisfying relationships, for example, or a happy family and a sense of contentment. The point is that success in life -rather than just school success-depends, not on academics, but on things like a healthy sense of self, the willingness to ask for and accept help, the determination to keep trying in spite of challenges, the ability to form healthy relationships with others, and other qualities that aren't as easy to quantify as grades and exam scores.

Six skills for success in life with a learning disability

A 20-year study that followed children with learning disabilities into adulthood identified the following six "life success" attributes. By focusing on these broad skills, you can help give your child a huge leg up in life.

1: Self-awareness and self-confidence

For children with learning disabilities, self-awareness (knowledge about strengths, weaknesses, and special talents) and self-confidence are very important. Struggles in the classroom can cause children to doubt their abilities and question their strengths.

2: Being proactive

A proactive person is able to make decisions and take action to resolve problems or achieve goals. For people with learning disabilities, being proactive also involves self-advocacy (for example, asking for a seat at the front of the classroom) and the willingness to take responsibility for choices.

3: Perseverance

Perseverance is the drive to keep going despite challenges and failures, and the flexibility to change plans if things aren't working. Children (or adults) with learning disabilities may need to work harder and longer because of their disability.

Talk with your child about times when they persevered-why did they keep going? Share stories about when you have faced challenges and not given up.

Discuss what it means to keep going even when things aren't easy. Talk about the rewards of hard work, as well as the opportunities missed by giving up.

When your child has worked hard, but failed to achieve their goal, discuss different possibilities for moving forward.

4: The ability to set goals

The ability to set realistic and attainable goals is a vital skill for life success. It also involves the flexibility to adapt and adjust goals according to changing circumstances, limitations, or challenges.

Help your child identify a few short- or long-term goals and write down steps and a timeline to achieve the goals. Check in periodically to talk about progress and make adjustments as needed.

Talk about your own short- and long-term goals with your child, as well as what you do when you encounter obstacles.

Celebrate with your child when they achieve a goal. If certain goals are proving too hard to achieve, talk about why and how plans or goals might be adjusted to make them possible.

5: Knowing how to ask for help

Strong support systems are key for people with learning disabilities. Successful people are able to ask for help when they need it and reach out to others for support.

Help your child nurture and develop good relationships. Model what it means to be a good friend and relative so your child knows what it means to help and support others.

Demonstrate to your child how to ask for help in family situations.

Share examples of people needing help, how they got it, and why it was good to ask for help. Present your child with role-play scenarios that might require help.

6: The ability to handle stress

If children with learning disabilities learn how to regulate stress and calm themselves, they will be much better equipped to overcome challenges.

Recognizing stress in your child

It's important to be aware of the different ways in which stress can manifest. Your child may behave very differently than you do when they are under stress. Some signs of stress are more obvious: agitation, trouble sleeping, and worries that won't shut off. But some people-children included-shut down, space out, and withdraw when stressed. It's easy to overlook these signs, so be on the lookout for any behavior that's out of the ordinary.

Tip 4: Emphasize healthy lifestyle habits

It may seem like common sense that learning involves the body as well as the brain, but your child's eating, sleep, and exercise habits may be even more important than you think. If children with learning disabilities are eating right and getting enough sleep and exercise, they will be better able to focus, concentrate, and work hard.

Exercise - Exercise isn't just good for the body, it's good for the mind. Regular physical activity makes a huge difference in mood, energy, and mental clarity. Encourage your child to get outside, move, and play. Rather than tiring out your child and taking away from schoolwork, regular exercise will actually help them stay alert and attentive throughout the day. Exercise is also a great antidote to stress and frustration.

Sleep - Learning disability or not, your child is going to have trouble learning if they are not well rested. Kids need more sleep than adults do. On average, preschoolers need from 11-13 hours per night, middle school children need about 10-11 hours, and teens and preteens need from 8½-10 hours. You can help make sure your child is getting the sleep they need by enforcing a set bedtime. The type of light emitted by electronic screens (computers, televisions, phone, and tablets) is activating to the brain. So you can also help by powering off all electronics at least an hour or two before lights out.
[Read: Childhood Insomnia and Sleep Problems]
Diet - A healthy, nutrient rich diet will aid your child's growth and development. A diet full of whole grains, fruits, vegetables, and lean protein will help boost mental focus. Be sure your child starts the day with a good breakfast and doesn't go more than four hours between meals or snacks. This will help keep their energy levels stable.

Encouraging healthy emotional habits

In addition to healthy physical habits, you can also encourage children to have healthy emotional habits. Like you, they may be frustrated by the challenges presented by their learning disability. Try to give them outlets for expressing their anger, frustration, or feelings of discouragement. Listen when they want to talk and create an environment open to expression. Doing so will help them connect with their feelings and, eventually, learn how to calm themselves and regulate their emotions.

Tip 5: Take care of yourself, too

Sometimes the hardest part of parenting is remembering to take care of you. It's easy to get caught up in what your child needs, while forgetting your own needs. But if you don't look after yourself, you run the risk of burning out. It's important to tend to your physical and emotional needs so that you're in a healthy space for your child. You won't be able to help your child if you're stressed out, exhausted, and emotionally depleted. When you're calm and focused, on the other hand, you're better able to connect with your child and help them be calm and focused too.

Your spouse, friends, and family members can be helpful teammates if you can find a way to include them and learn to ask for help when you need it.

Tips for taking care of yourself

Keep the lines of communication open with your spouse, family, and friends. Ask for help when you need it.

Take care of yourself by eating well, exercising, and getting enough rest.

Join a learning disorder support group. The encouragement and advice you'll get from other parents can be invaluable.

Enlist teachers, therapists, and tutors whenever possible to share some responsibility for day-to-day academic responsibilities.

Learn how to manage stress in your own life. Make daily time for yourself to relax and decompress.

Communicate with family and friends about your child's learning disability

Some parents keep their child's learning disability a secret, which can, even with the best intentions, look like shame or guilt. Without knowing, extended family and friends may not understand the disability or think that your child's behavior is stemming from laziness or hyperactivity. Once they are aware of what's going on, they can support your child's progress.

Within the family, siblings may feel that their brother or sister with a learning disability is getting more attention, less discipline and preferential treatment. Even if your other children understand that the learning disability creates special challenges, they can easily feel jealous or neglected. Parents can help curb these feelings by reassuring all of their children that they are loved, providing homework help, and by including family members in any special routines for the child with a learning disability.

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Helping Children with Learning Disabilities - HelpGuide.org

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Practical tips for making things easier both at home and school for a child with a learning disorder.

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FB Group: Parents of Special Needs Children

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FB Group: Parents of Special Needs Children

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This is the best smile, on the cutest face I know. in addition to being TBI awareness month, March is also CP awareness month. Eli has quad spastic CP due to... his traumatic brain injury (from shaken baby syndrome). Quad (meaning all 4 extremities are effected) spastic (meaning very tight muscle tone with frequent spasms) cerebral palsy, which is a disorder of movement, muscle tone, and posture. CP can be congenital (meaning it's happened at birth) or in Eli's case acquired (meaning it happened after birth, usually do to trauma). Quad spastic CP is one of the more severe forms of CP. It has contributed to Eli's scoliosis, which he has titanium rods attached to his ribs and spine to counteract. It also contributes to organ compression, which is what the rods are to help prevent or slow down. Also due to his CP, Eli has a baclofen pump implanted into his abdomen, with a catheter that goes directly into his spinal cord to deliver minute doses of his muscle relaxers where they are needed most. Bc his legs were the biggest thing we had issues with (changing, diapering and positioning due the the spasticity) we planted the catheter for his pump lower so it would help the bottom part of his body. You can see his spinal rods and his pump and feeding tube on his body scan in the third pic. He also gets Botox and phenol injection in his right upper body and neck every six to 8 months. He is unable to sit unassisted or walk on his own. So he uses a wheelchair is fully dependent for his care. At almost 17 he's 3 inches taller than me and weighs right around 110 pounds, so lifting him is quite a work out!

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This is the best smile, on the cutest face I know. in addition to being TBI awareness month, March is also CP awareness month. Eli has quad spastic CP due to... his traumatic brain injury (from shaken baby syndrome).

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Read More

Parenting Special Needs Kids

But you do what you have to do for your beautiful child. You endure with grace (usually) the annoying platitudes of friends and family who don't get it, who can't get it. And though you fight not to roll your eyes when you hear once again how strong you are to manage all that you manage, you have to admit there is truth there. You ARE, in fact, a rock star. more

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Read More But you do what you have to do for your beautiful child. You endure with grace (usually) the annoying platitudes of friends and family who don't get it, who can't get it. And though you fight not to roll your eyes when you hear once again how strong you are to manage all that you manage, you have to admit there is truth there.

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20 Things Every Parent of Kids with Special Needs Should Hear

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20 Things Every Parent of Kids with Special Needs Should Hear

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20 Things Every Parent of Kids with Special Needs Should Hear

By Dr. Darla Clayton, PsyD, The Mobility Resource

1) You are not alone.
There may not be anyone else with the same constellation of symptoms as your child but there are people with similar challenges. Find those people. I have never met anyone with all of these same challenges as my kid but I have a strong network within each separate diagnosis. We have made wonderful friends and have found-and I hope provided-a great deal of support within each of these. I just have to pop onto one of my Facebook groups and I'm immediately reminded, I'm not alone.

2) You too deserve to be cared for.
We are placed in a position of caring for others nearly constantly. However, you still need and deserve to be cared for. That entails asking friends or family to bring a meal by every now and then, or going for a pedicure, or a date night, or whatever else you enjoy doing. Whatever makes you feel special and taken care of, take the time to enjoy it, you are worth it!

3) You aren't perfect-and that's ok!
No one is perfect. We all make mistakes. We can wallow in our goof-ups or move on! Try to shift your thinking, maybe there was a good reason you missed that appointment, that you were sure was on Tuesday but apparently was on Monday. Maybe your kiddo had a tough day at school and just needed the night off. Who knows? But beating yourself up isn't going to change the situation, so try to move on.

4) You are a superhero.
You may not leap buildings in a single bound or run faster than a speeding bullet but you are a superhero none the less. Everyday, you manage situations that a regular parent would think are impossible. You stretch tight muscles, remember pills, inject and infuse medicine. You hold hysterical children during horrendous medical procedures. You deal with tantrums and melt downs. And most often manage not to have a tantrum or melt down yourself. You encourage your child to do things doctors told you they would never do but you never gave up hope. You are a therapist, nurse, doctor, friend and confidante. You are no regular parent.

5) Therapy is play.
Having sat in on several therapy sessions, I have been frustrated by what I thought was premature discharge from therapy on more than one occasion. Since then, I have grown, I have learned and I have come to understand. For children, therapy is play and play is therapy. What I mean is that the best therapists find ways to make my son engage in challenging activities that he otherwise would have balked at, by making it a game that he wanted to play. We took a page from their book and did the same at home.

6) Play is therapy.
Yes this is different from number five. After discharge from therapy, we sought extra curricular activities for my son that would offer therapeutic benefits. He played sled hockey, runs on a track team, learned to shoot archery and takes swim lessons. All of this is therapy. He's learning, having fun and getting stronger. Win, Win and Win!

7) Make time to enjoy your kids
We super parents tend to be fairly busy and often over scheduled. However, while everything on your calendar is important, it's also important to make time to play, laugh, be silly and just enjoy your kids. Read to them, snuggle with them, engage with them with what's important in their worlds. Make memories outside of hospital walls.

8) You will be obligated to make heart wrenching decisions.
You will have to make painful decisions that hurt your heart and leave you questioning everything you thought you knew or understood. Know that you are doing your best, remember number three. I am guilty of agonizing over these types of decisions, they can become really overwhelming to me. Talk about your conundrum with others who get it and trust yourself to make the best decision. Make it move on and once it's made don't rethink it. Easier said than done, but worth a try!

9) You won't always get it right.
Many of the choices you are forced to make have no right answer, just the lesser of the hard and painful wrong choices. You will do your best but you won't always get it right no matter how many sleepless nights you spend agonizing over how to handle a situation.

10) Forgive yourself.
Yes, you will screw things up sometimes despite the very best of intentions. No amount of torturing yourself will make you feel better, nor will it help you to make better choices. Remember many of the toughest decisions have no right answer.
See also: 7 Confessions of a Special Needs Mom

11) Being a parent is hard. Being a parent to a child with extra needs is extra hard.
It can also be extra rewarding. Make us extra passionate. And will almost always make life extra interesting. With the challenges come the rewards. Sometimes you have to search your heart for the rewards but they are there if you look for them.

12) Parenting a child with extra needs is like a marathon.
For those folks who are trying to win a marathon, there are no breaks. If you want to stay in the race, you eat, drink and even pee while running. But our marathon will go on for the foreseeable future and beyond. So remember, you don't need to win, just make it to the end. The guy who comes in last place in the marathon, he took breaks, he stood and drank some water, grabbed a quick bite and used the porta-john for his business, then got back on the road. Give yourself those moments-however brief-that are for yourself. Goodness, you might even get to pee in peace every now and then.

13) Don't lose yourself.
Don't let being the parent of a special needs child create or reshape your identity. We are many things, being the parent to a child with special needs is part of our identity. But it shouldn't be all of our identity. When you focus all of your life, all of your contacts, all of yourself around your child and their needs, who you are can get lost. Find things in your life you enjoy doing, a glass of wine, a hobby, shopping for yourself.

14) Keep your sense of humor.
Certain things get under my skin, we all have our buzz issues, one of mine is people first language. But if you're not careful, you can become overly sensitive to so many things that people start to avoid your company. Many colloquialisms like "I almost had a stroke", or "I nearly had a heart attack" are disconcerting to parents whose children have in fact had a heart attack or a stroke. However try to remember that people are not making these comments to offend or upset you.

15) Celebrate the little things!
Brag about those accomplishments that might seem small to others but are huge for our kids! Our kids develop on their own clock, they learn many skills late and some they never master. A wiggled toe that couldn't wiggle before, a word, a sentence, a smile, a hug, whatever that milestone may be, share it with those who love you and your child.

16) Don't let typical parents get you down.
I know how hard it is to hear from parents that their child six months younger than yours is walking and yours isn't. Or dealing with the well meaning stranger who asks why your 2-year-old is scooting around on their butt rather than being up on their feet. Try to remember that these people lack the context that we are constantly embedded in. Explain, teach, be patient, raise awareness amongst those who just don't get it. And remember, typical parents deserve the right to brag too and their pride at their child's accomplishments is not meant as a knock to your amazing kiddo.

17) Don't compare.
This is another challenging one folks, but worth the work. All kids are different, typical, or with extra challenges and they will grow and develop at their own pace. If a developmental milestone isn't met as you think it should be, certainly talk to your child's doctor. Comparing, siblings, cousins, kids in the daycare class, or even comparing kids within the same disability type rarely serves to make you feel better. Your child is unique, and will have their own individual strengths and challenges.

18) You don't have to be "THAT" parent.
You know the one who clearly spent 10 hours creating the amazing snack shaped like an animal with licorice whiskers. The one who sends adorable treat bags for every holiday. The one who finds the coolest gifts for the teachers every year. And whose child is always dressed in the cutest outfits that somehow never get dirty. If that's the mom you are led to be, more power to you! However, I have found that there are always enough of those mom's in my kid's classes to keep them in cute snacks and treat bags. Since I have bigger fish to fry, I let them have all the glory!

19) Make time for your marriage.
Marriage is hard work, period. Parenting is hard work, period. Parenting a child with special needs, is especially hard work, period! For those of you who are married or in a relationship, make time for that relationship away from your children.
See also: The Barracuda Momma: Celebrating Mom's Gift of Sacrifice

20) Trust your instincts.
You know your children best. Doctors, teachers, therapists are all fantastic resources but if you don't feel like you're being heard, or your child's needs are being met, it's very reasonable to get a second opinion. Don't be afraid to fight for your child and their needs. While the professionals are experts in their areas, you are the expert on your child.
Answering to Mom, Mama and Mommy, Dr. Darla Clayton is a Coach and psychologist as well. She earned a doctorate in clinical psychology from Indiana University of Pennsylvania. She is a wife and a mother to two fantastic children, a 9-year-old son who has cerebral palsy and a 5-year-old daughter. Inspired by her son's success competing in adaptive sports, and concerned by the lack of sport options available to him, she founded Strong as Steel Adaptive Sports in 2011. The team provides sport specific training and opportunities for children ages 5 to 21 with physical disabilities and visual impairments. Disclaimer: Dr. Darla writes from the perspective of a mom in the midst of raising a child with a disability and one without. While she works as a psychologist in her other life, she would like to make it clear that she is in no way intending to offer medical or mental health advice through this venue.
Pre-Register for Abilities Expo Today...It's Free!

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20 Things Every Parent of Kids with Special Needs Should Hear

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By Dr. Darla Clayton, PsyD, The Mobility Resource 1) You are not alone. There may not be anyone else with the same constellation of symptoms as your child but there are people with similar challenges. Find those people. I have never met anyone with all of these same challenges as my kid but I have a strong network within each separate diagnosis.

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Center for Parent Information and Resources

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Center for Parent Information and Resources

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Has a child's disability recently touched your life? Are you visiting our website today looking for information about that disability? Would you like to find organizations and people that can help address the disability-related questions and concerns you may have?

We're very pleased you're here, because the CPIR has a great deal of information about disabilities to share. We hope this page will:

give you a quick roadmap to the disability world of help that's available in the United States; and

point you to disability resources on this website and beyond that may come in handy, now and as time goes by.

To speed you to information most relevant to you and your situation, we've divided the discussion below into two main parts. Click on the section that seems most relevant to your quest for information today, or just read straight through!

For Parents and Family Members

The Parent Center network is honored to welcome you to the disability community of those who are raising a child with disabilities. There is a lot of help, understanding, and assistance available, you'll be glad to know.

First, A Home Truth About Disability
There are many home truths about disability, but perhaps the most visible one is that "disability is a natural part of the human experience..."

We've quoted here from Congress. This was the first finding of Congress when it wrote the nation's special education law, the Individuals with Disabilities Education Act. You'll find many disability laws in the United States. They are all part of a national policy "to ensure equality of opportunity, full participation, independent living, and economic self-sufficiency for individuals with disabilities." Not surprisingly, there are many systems in place to address disabilities. These exist at the national, state, and local levels. We'll describe how to connect with these systems in a moment.

Other Home Truths
Given that disability is a natural part of the human experience, you may also appreciate several related home truths. These come from people who have disabilities or those who are involved with someone who does.

Your child is a person first, always.
Disability does not define your child's selfhood, any more than the color of his or her eyes does. Individuality grows from the rich soil of personality, experience, health, education, upbringing, and more. Know this for fact, and see it unfold in real time, as your child grows and matures. Having a disability is part of the mix, but so are your child's strengths, humor, talents, and interests.

Don't let the labels get you down.
We humans like to have a name for things-and that includes disabilities. We use terms like "learning disabilities" or "AD/HD" or "autism." These can seem like labels sometimes, limiting and impersonal. It's not uncommon for parents to resist having a label hung on their son or daughter. Some parents even resist accepting special help for their child because of labeling. Yet--labels are just terms used for a particular purpose. They're a convenient way of referring to something. And in the case of children with disabilities, schools are required to report the number of students they've helped according to specific categories. They have to use labels.

All this is to say: Try not to get too bugged by the label issue. Use the label when it's convenient or helpful, like when you're looking for information on your child's disability. Forget the label the rest of the time. Your child's the same person, either way. He or she hasn't changed one bit, label or no label.

Disability does not mean that your child cannot learn or be educated with peers without disabilities.
Parent Centers talk to many parents who've just learned that their child has a disability. Many wonder and worry that the disability means their child cannot learn or must now be educated in a separate classroom, away from friends and peers without disabilities. Not true. As you learn more about the special education system and how it works, you'll find that IDEA actually prefers students being educated together in the regular classroom.

Also, keep in mind that everyone learns differently. We all have our own personal style of learning, and so does your child. This includes our strengths and weaknesses, preferences and interests, talents and motivation. All of these factors go into how we, as individuals, learn and grow. Your child can learn, will learn. It's the job of special education to adapt instruction to fit your child's learning needs.

Learn as much as you can about your child's disability.
They say knowledge is power, and they're right. It's essential to learn more about your child's disability. How does the disability affect learning, movement, memory, behavior, and so on? What kind of special services help? What type of instruction is effective? These are the kinds of questions to ask. Share relevant information with the professionals working with your child. Also share your insights about your child's learning styles and preferences that only a parent can have.

You know your child best. Does what you're learning "fit" your knowledge of your son or daughter?
So you're reading scads of information about this disability. Keep in mind that not all of it may actually fit your child. He or she is unique, after all. Take the info that fits your child, sounds like your child, or might be helpful to your child, and use it. Leave the rest aside.

You're not alone.
Disability being part of the human experience, it's safe to say that many parents are where you are today, or have been where you are--searching for answers. It really helps sometimes to read what other parents have to say about raising a child with a disability. We recommend reading the short essay You Are Not Alone, written many years ago by parent Patty McGill Smith.

Finding the Information and Help You Need
OK, friend, let's get down to different business-connecting you with resources of help out there. In this section, we're not going to explain anything in detail (the page would never end!). We ARE going to suggest that you visit certain pages on this website. That's where you'll find things explained.

Here's a handy list of topics you can investigate. We've organized them in roughly the same order in which a parent might move forward, gathering information from the ground up. But feel free to jump around, if you'd like.

Each of the choices below will open in a new window, so this page stays open. That way, you can keep coming back to it and finding another corner to poke around in.
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What information are you looking for today? Re: Babies and toddlers, birth to the 3rd birthday:
The baby next door can do so many things that mine can't, and they're both 11 months old! Should I be concerned?
Read our Developmental Milestones page.

Where can I have my little one evaluated to see why she isn't....(sitting up, babbling, talking, walking...) yet?
Evaluations of babies and toddlers are conducted free of charge by the state, when there's a concern that the little one has a disability or a developmental delay. Find out where you can have your wee one evaluated by reading Services in Your State for Infants and Toddlers.

Tell me about the help available for babies and toddlers with disabilities.
We're pleased to! Read about early intervention.

Where do I find help in my state?
You'll want to get in touch with the Parent Training and Information (PTI) center that serves your State. Your State may also have a Community Parent Resource Center (CPRC) that, too, helps parents and family members to connect with vital information and needed assistance in their State and beyond. Visit Find Your Parent Center.

Are there parent groups I can join?
Yes, indeed. Many different kinds, in fact.
Read Parent Groups.

I don't even know what to ask! It's all too new.
Understood. The first steps into the disability world can be overwhelming. But go step by step. There's a lot to learn and know. We humbly suggest that you poke around this website, especially the Repository of Resources, and see what you find. We also strongly suggest that you visit the website of the PTI or CPRC that serves your State.
Re: School-aged children, ages 3-21 I want to read about my daughter's disability.Oh, we have just the place for you to start.

Head over to Categories of Disability and connect with fact sheets on disabilities.
My child is not doing well in school. What should I do?
Ask the school to evaluate your child under IDEA. The evaluation is free. Results are then used by you and the school: (a) to determine if your child has a disability that's affecting his or her schoolwork; (b) to determine whether your child needs special services in school (called special education); and (c) if so, to help you and the school plan what type of help and support your child will receive.
Please read Evaluating Children for Disability.

I don't know much about special education. Tell me the basics.
Sure, can do.
Read 10 Basic Steps in Special Education.

Are there parent groups I can join?
Yes, indeed. Many different kinds, in fact.
Read Parent Groups.

Who can help in my State?
The Parent Training Information (PTI) center and the Community Parent Resource Center (CPRC) in your State. Not all States have CPRCs, but all have at least one PTI. Connecting with your PTI or CPRC can plug you into who's-who and what's-what where you live.

What are my rights as a parent?
That's a great question. The answer is: You have many rights. Hustle over to the Parental Rights section and dive in.

I don't even know what to ask! It's all too new.
Understood. The first steps into the disability world can be overwhelming. But go step by step. There's a lot to learn and know. We humbly suggest that you poke around this website, especially the Repository of Resources, and see what you find. We also strongly suggest that you visit the website of the PTI or CPRC that serves your State.

We hope this brief introduction to the disability network has gotten you started in your search for information and connection. As your child grows and your experience evolves, your questions will change. The Parent Center network stands ready as an ongoing source of answers and connections.
As a parent new to the disability community, you may also find these last few resources on target: The Unplanned Journey: When You Learn Your Child Has a Disability
https://www.parentcenterhub.org/journey/
Parent Participation in Early Intervention (Children birth to the 3rd birthday)
https://www.parentcenterhub.org/parent-participation-ei/

Parent Participation in Special Education (Children 3-21)
https://www.parentcenterhub.org/participation/

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Has a child's disability recently touched your life? Are you visiting our website today looking for information about that disability? Would you like to find organizations and people that can help address the disability-related questions and concerns you may have? We're very pleased you're here, because the CPIR has a great deal of information about disabilities to share.

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DEAR FUTURE MOM | March 21 - World Down Syndrome Day

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DEAR FUTURE MOM | March 21 - World Down Syndrome Day

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DEAR FUTURE MOM | March 21 - World Down Syndrome Day | #DearFutureMom

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HAPPY World Down Syndrome Day / Welt Down Syndrom Tag #HAPPYDAY Pharrell Williams

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I have one more chromosome than you. So what? | Karen Gaffney | TEDxPortland

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I have one more chromosome than you. So what? | Karen Gaffney | TEDxPortland

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I have one more chromosome than you. So what? | Karen Gaffney | TEDxPortland

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The I’m Determined project, a state directed project funded by the Virginia Department of Education, focuses on providing direct instruction, models, and opportunities to practice skills associated with self-determined behavior.

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Pathways to the Future - Your Future Begins Now

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Welcome to Pathways to the Future! This site is a collection of resources, tools and people to help students with disabilities, through the journey from youth to adulthood. Your future begins now! It's never too early to start planning for your future and exploring pre-employment transition services.

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Offering ABLE Accounts to West Virginians with disabilities

Tax-free savings plan for disability-related expenses

Save and invest without losing federal needs-based benefits

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Tax-Free Earnings

Earnings on savings are tax-deferred and tax-free when used to pay for qualified expenses.

Financial Benefits Not Affected

Balances and distributions do not affect federal needs-based financial aid such as Medicaid or SSI.
Subject to some limitations

The STABLE Card

Participants can request their own STABLE Visa® Prepaid Card that can be used to spend money on qualified expenses.

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MAKE EASY DEPOSITS ONLINE

Contribute up to $15,000 per year. If employed, you may be able to contribute up to an additional $12,490 of income.

DIVERSE CHOICES

Choose from among five different investment options, including four mutual fund based investments and one FDIC-insured investment

FLEXIBLE CHANGES

Freedom to change your investment options twice every calendar year

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Use the money in your account to pay for any expense related to your disability - not just medical expenses. Examples of things you can use your STABLE Account for:

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If you can't find what you're looking for or need assistance, we can help! Visit the WVABLE Frequently Asked Questions page or contact us below.

STABLE Accounts are not guaranteed or insured by any state, any state agency or subdivision thereof, or their authorized agents or affiliates. You could lose money by investing in a STABLE Account. Consider investment objectives, risks, charges and expenses before investing. Before you open an account, you should carefully read and understand the STABLE Account Plan Disclosure Statement and Participation Agreement. WVABLE is offered through a partnership with the Ohio Treasurer's Office, the administrator of the STABLE Account Plan.

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Offering ABLE Accounts to West Virginians with disabilities Tax-free savings plan for disability-related expenses Save and invest without losing federal needs-based benefits Audio Audio Earnings on savings are tax-deferred and tax-free when used to pay for qualified expenses. Balances and distributions do not affect federal needs-based financial aid such as Medicaid or SSI.

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What I Want New Parents of Children With Down Syndrome to Know

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What I Want New Parents of Children With Down Syndrome to Know

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Happy Down Syndrome Awareness Month! I am often asked what I would say to new parents and parents of younger children with Down syndrome. Twenty-one years later, this is what I would say.

I want to start by saying congratulations. You are not alone. You have a tremendous support system in the Down syndrome community and beyond. Keep that tucked in your heart and mind.

I do not remember who said it and I know it is cliche, but when my daughter was born someone told me, "treat her as much like a typical child as you can." That is one of the most meaningful things anyone has said to me, and that is my advice, too. We do not have other children, but we have been around some great and not-so-great parents and through the years, we have worked with teenagers in church and the community. I tried to think like Rachel was a typical child.

Clearly, most typical children are not in therapies and such, but when Rachel was old enough to go to the church nursery she did, and she was treated like all the other children. We did Mom's Day Out and preschool - just like our friends' kids. Time for dance and off we went to a typical dance studio. The same for soccer, T-ball, Kindermusik - whatever it was, as a starting point, we always looked for typical activities where she could be included. It was not bump-free, but I think it is a large part of why she is who she is now.

Be educated and educate. Notice I did not say, educate and be educated. You will hear repeatedly that you know your child best. You need to know that, believe that and proclaim it. Practice it in the mirror and believe it unquestionably. When you share what is best for your child, though, you need to be educated. Go to conferences and workshops and learn from other parents and adults with Down syndrome. Utilize dependable online resources and study the research. If you educate yourself, you will be able to educate others. Those others may be family and friends, and they may be teachers, doctors, and other professionals. You will be able to call the coach, teacher, or preschool director and tell them about your child and help them know how to work with your child and some of the research behind what works.

Find a support system with real live people. Facebook and social media outlets are nice, but try to find some real people who have walked or are walking in your shoes. If you live in an area and there are not many folks with children with Down syndrome, find someone with a child with another disability. You will have many things in common, and you will need them. They will tell you about the best healthcare professionals and activities, and they will tell you about programs and resources you need.

There will be a day when you want to celebrate something that your friends, no matter how great they are, do not quite understand because they do not have a child with a disability. These will be the people who will understand when your friend who has three children who all talked early, walked early and were accepted to the college of their choice at the age of three have the audacity to tell you that "you should be glad your 3-year-old isn't walking yet. When they start walking, they are just into everything."

They will understand that words really do hurt. They will celebrate what seems mundane to many parents, and they will hold your hand and listen when you are just tired of it all. They will also be the people that join you in advocating for systems change right where you are.

It is OK to have a pity party - as long as you do not stay stuck there. In fact, I highly recommend a good pity party from time to time. This journey is not for the faint of heart or weak, so from time to time you need to have a pity party, pamper yourself, whatever. Then, look in the mirror and say, "Time to be over this pity party. I have things to do." Now, go do it. As an aside, be in tune with your emotions and if you find yourself stuck, seek help. There is no shame in that.

Most likely, there will not be irreversible harm and your child may even thrive if they miss a therapy session. It is OK to act like other people sometimes. It is a holiday break, so take a break and do not feel guilty. Want to punt it all and head to the zoo because it is pretty outside? Do it. Give yourself permission to not be perfect.

Have high expectations and share those with others. Yes, you will have a few people on this journey that will not get it. You will also meet people on this journey who want to get it and need you to show them how. Think about where you want this precious child to be at 18, 21, or 25. Remember, your child is valuable just because he or she is and not because of anything he or she does or doesn't do. Every single one of us has strengths and challenges. When I found out by prenatal diagnosis my daughter had Down syndrome, I remember thinking "she will never be an Arkansas Razorback cheerleader." Of course, I did not really know that. It was just my perception. More importantly, I wasn't an Arkansas Razorback cheerleader either, and my life has been pretty good.

Finally, laugh.

Laugh at yourself. Laugh at and with your child, your spouse, your friends. Laugh at others and I do not mean in a disrespectful way. A little self-deprecating humor can keep you balanced. When I was pregnant with Rachel, my husband Jonathan had colorectal cancer. We were about six months into both journeys, and he was in the middle of his chemo and radiation regime. Our beloved Beagle Festas got this hacking cough.

Festas was on a heartworm preventative but a persistent hacking cough can still be a sign of heartworms in a dog. After listening to him hack half the night, Jonathan looked at me and said, "You should probably take Festas to the vet today. With our current luck, he probably has heartworms, and I do not want to be the next big country music hit: I have cancer, my baby has Down syndrome and my dog died." We fell out laughing.

Enjoy the journey. If I have learned one thing from my Rachel, it is that there is joy in the journey.

Twenty-one years later, that is what I would say.

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What I Want New Parents of Children With Down Syndrome to Know

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Happy Down Syndrome Awareness Month! I am often asked what I would say to new parents and parents of younger children with Down syndrome. Twenty-one years later, this is what I would say. I want to start by saying congratulations. You are not alone.

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Rewriting the Script for Parents of Babies With Down Syndrome

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Rewriting the Script for Parents of Babies With Down Syndrome

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Randi, Simon and Brian Beyerl

For new parents of babies born with Down syndrome, the educational brochures that were at their disposal made them feel less than hopeful. Mayo Clinic's Office of Patient Education knew they could do better, so a team set about creating new materials to provide families with a more optimistic outlook.

Mallory Diercks hadn't expected to be studying materials about babies with Down syndrome. But soon after their second child, Easton, was born, health care providers told Diercks and her husband that their son showed signs of Down syndrome. Tests later confirmed those suspicions.

As she sat in her bed at Mayo Clinic Hospital - Rochester, Methodist Campus, learning about the new world her family had entered, Diercks was overwhelmed. "It was all negative," she says. "It was all about what your child would not do."

Diercks read about potential health issues, developmental delays and never-wills. "There was nothing that made me feel, 'OK, I can do this,'" she says. "I had so many fears. There was nothing uplifting in the material, and I needed that."

She wasn't alone. Other parents of children with Down syndrome had similar experiences. Late last year, one of them reached out to the Mayo Clinic Office of Patient Experience. "A parent shared that she felt there was a gap in the quality of education provided to families," says Jill Walters, a Mayo Clinic senior patient education specialist. "She felt the material she received was not sensitive or hopeful."

When Walters reviewed the materials, she agreed. She also realized that none of the resources being given to parents had been created by Mayo Clinic. "The material looked nice," she says. "But after reviewing the messages, I thought, 'Oh, we could do a lot better.'"

Over the next several months, Walters and a team that included parents created a new printed brochure to be given to families at Mayo Clinic that better reflects the reality of life with Down syndrome.

As Diercks has discovered in the seven years since Easton's birth, it's a life that includes both more normalcy and more joy than she ever imagined that day in her hospital bed. "I used to think, 'I don't know how I would handle it if I had a child with a disability.' I didn't think I could do it," she says. "But my greatest fear has turned into my biggest blessing. I would take another Easton in a heartbeat."

Offering information and reassurance

Creating materials in response to feedback received directly from a patient was a new experience for Walters. "I haven't ever had that happen before," she says. "We're very proactive about assessing the need for educational materials. But this was a need we hadn't been aware of."

Walters was determined to meet that need. She requested and received approval to create new material that would provide honest information on Down syndrome. The piece would include medical information, but Walters also wanted to provide something else - the reassurance and hope that parents craved.

"The tone had to be positive. It had to be optimistic," says Mary Curtis, a communications consultant in Mayo Clinic's Office of Patient Education whose job it was to write the brochure. "We needed new parents to know they could look forward to a good and hopeful future for their children."

"It was really a gift to be able to do this and help shape the message that's going out to other families." Randi Beyerl

As Walters and Curtis discussed their approach to the project, they decided to involve a broad team of experts. In addition to consulting health care providers and geneticists for the most up-to-date information on Down syndrome, they also would include the voices of parents who had children living with the condition.

Walters reached out to the mother whose feedback had launched the project and asked if she'd be willing to provide input on the new material. She also asked to be connected to other families who might be open to helping out.

"We reached out to nine families and received enthusiastic yeses across the board," Walters says. Diercks was among them. "I was elated when they reached out to me," Diercks says. "I think it's wonderful that they asked parents for input. Geneticists and doctors may have the medical information, but they don't really understand things in the same way that parents do."

Randi Beyerl, whose son, Simon, has Down syndrome, agrees. "It was really a gift to be able to do this and help shape the message that's going out to other families," she says. "After we learned Simon would have Down syndrome, I desperately wanted to hear from other parents. The best part of the material I received after his diagnosis were the quotes from parents. Those are what I focused on."

Highlighting real families, real lives

In addition to incorporating messages from parents in the brochure, Walters wanted the publication to show real families living real lives. She scheduled a series of photo shoots where Mayo Clinic photographer Paul Flessland captured images of children with Down syndrome interacting with others at home and in the community. Walters and Curtis directed the photo shoots and got a firsthand look at the families' lives.

"It was an unbelievable experience," Curtis says. "Sitting at my desk, it can be easy to feel distant from our patients. This experience was a spectacular reminder of why I choose to do what I do. Jill and I knew we had to do right by these amazing people."

"Easton is way more like his brothers and sister than not. He's not that different." Mallory Diercks

The photos show children with their parents, siblings and classmates. They're reading, shopping for groceries and sharing dessert at a restaurant. The images are designed to convey a message to parents who have received the news that their child has Down syndrome: Your life will not be as different as you may fear at this moment.

"We are a very normal family unit," says Diercks, who has three other children. "Yes, there are hard days. But there are hard days with all children. Easton is way more like his brothers and sister than not. He's not that different."

Randi Beyerl also has found that to be true. "There are extra appointments, but lots of normal," she says. "When I hear co-workers talking about their kids, I'm like, 'Yep, us too.'"

For the aspects of her son's life that are different or difficult, Beyerl has discovered an army of supporters. "There are lots of specialists to help you along the way," she says. "There is also a community of other parents. Connecting with other families is so important and so helpful. We have each other. We are not alone."

Raising awareness, sharing hope

The new patient education brochure was completed in October, coinciding with Down Syndrome Awareness Month. But for the parents who participated in the project, every day is an opportunity to raise awareness.

"Having Simon has given me a fire inside for advocacy," Beyerl says. "It is important to my husband and I that Simon is valued for who he is and receives services that will help him thrive."

That's one reason she and other parents were grateful for the opportunity to help develop the material and shape the conversation around Down syndrome. "I'm thrilled Mayo is listening to families," Diercks says. "I'm very excited to be sharing our perspective and getting more awareness and hope out there."

"An awareness of the risks and challenges is important. But so is hearing about the joy and gifts your child will bring to your family." Randi Beyerl

Beyerl feels the new material provides a more balanced and accurate picture to parents who receive the news that their child has Down syndrome. "An awareness of the risks and challenges is important," she says. "But so is hearing about the joy and gifts your child will bring to your family."

Diercks agrees. "The worst thing people say - and people still say this to me - is 'I'm sorry,'" she says. "Don't be sorry. We're very thankful for Easton. We're truly blessed to have him."

That's a message that appears front and center in the brochure, which begins with the words new parents love to hear: "Congratulations on your new baby!"

View a slideshow of photos included in the new brochure:
HELPFUL LINKS
Tags: Down syndrome, Education, Mayo Clinic Children's Center, patient education, Pediatrics

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Rewriting the Script for Parents of Babies With Down Syndrome

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For new parents of babies born with Down syndrome, the educational brochures that were at their disposal made them feel less than hopeful. Mayo Clinic's Office of Patient Education knew they could do better, so a team set about creating new materials to provide families with a more optimistic outlook.

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WVU Center for Excellence in Disabilities

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WVU Center for Excellence in Disabilities

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Center for Excellence in Disabilities | Center for Excellence in Disabilities

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The WVUCED leads efforts to provide better services to West Virginians with disabilities through training, research and services.

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WVU Center for Excellence in Disabilities

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WVU Center for Excellence in Disabilities

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Specialized Family Care Program

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The Specialized Family Care (SFC) Program is in place to help link adults and children who have intellectual or developmental disabilities with families that are willing to open their homes to them and offer loving family environments. SFC allows a person to continue living in the community in safe, loving family units, rather than being confined to an institutional setting or left unattended without care in the community. SFC also gives help to families who care for their loved ones at home by providing part-time care for their family member over short periods of time, and then have their loved one returned to their own homes.

Persons qualified for this program live in a foster care setting with individuals and families who are specially screened, trained, and state certified to provide care in their home, 24 hours a day, offering the person care, support, training, and supervision. The person is welcomed into that home as a family member.

*If you have trouble accessing either of these forms, please contact Healther Boyd.

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The Specialized Family Care (SFC) Program is in place to help link adults and children who have intellectual or developmental disabilities with families that are willing to open their homes to them and offer loving family environments.

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The 2020 Census is quickly approaching, and it is important that people with disabilities and their families are ready to be counted!

Every 10 years, everyone in the United States is counted through the census. It is important that everyone is counted because the census data impacts many key things. For example, the census data is used to figure out how much money state and local governments get for Medicaid, housing vouchers, the Supplemental Nutrition Assistance Program (SNAP), and education programs. When there isn't enough money, services and programs for people with disabilities can be cut. Census data is also used to determine how many representatives each state gets in the House of Representatives. Click Here to take the pledge to be counted.

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The 2020 Census is quickly approaching, and it is important that people with disabilities and their families are ready to be counted! Every 10 years, everyone in the United States is counted through the census. It is important that everyone is counted because the census data impacts many key things.

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DRWV is available and here to help.

Disability Rights of West Virginia understands that COVID-19 is a serious threat to the health, safety and well-being of people with disabilities. We have taken prompt action to help stop the spread of this disease while continuing to provide the strong advocacy our clients need. DRWV staff have the tools to continue their important work. While doing our part to keep physical distance, we want you to know we are here for you.

Please call our Intake Department between the hours of 8:30 am - 4:30 pm at 800-950-5250 for assistance.

You Can Make a Difference

By giving, you will help Disability Rights West Virginia serve more people with disabilities.
DRWV is a non-profit organization that advocates for West Virginia residents with disabilities.

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DRWV is available and here to help. Disability Rights of West Virginia understands that COVID-19 is a serious threat to the health, safety and well-being of people with disabilities. We have taken prompt action to help stop the spread of this disease while continuing to provide the strong advocacy our clients need.

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WVDHHR Bureau for Behavioral Health Intellectual and Developmental Disabilities

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WVDHHR Bureau for Behavioral Health Intellectual and Developmental Disabilities

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The unit of Intellectual and Developmental Disabilities provides leadership, facilitation, technical assistance and funding to support children and adults who have intellectual/developmental disabilities. The Division works in partnership with the public and private organizations, at both the state and local level, to promote evidence-based practices that enable individuals to live, work and participate in their communities and with their families. The Division promotes self-determination, protects humans rights and supports services in the most integrated setting possible.

BBH Programs and Services:

Family and Community Support Programs
My Bike WV Application
Positive Behavior Support Training and Consultation
Traumatic Brain Injury Assessment and Resource Coordination
Supported Employment Grantee Contacts
TBI Funds for Y ou Updated 6/18/19
TBI Application FY 2020 Updated 6/18/19
Unmet Needs Policy 2017 Updated!
Unmet Needs Request Application Final
Wait List Support Grant Updated!

Other State Resources:

Centers for Excellence in Disabilities
Developmental Disabilities Council
Advocacy:

Contacts for Medley Advocates
Helpful Organizations in WV
Legal Aid of WV's Family Advocacy, Support and training (FAST)
The Arc of West Virginia
People First
Disability Rights of West Virginia

Other Service Links:

Specialized Family Care
WV Birth to Three Program
Team Autism
WV Parent Training and Information
WV Division of Rehabilitation Services
WV Assistive Technology System

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The unit of Intellectual and Developmental Disabilities provides leadership, facilitation, technical assistance and funding to support children and adults who have intellectual/developmental disabilities. The Division works in partnership with the public and private organizations, at both the state and local level, to promote evidence-based practices that enable individuals to live, work and participate in their communities and with their families.

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WV Advisory Council for the Education of Exceptional Children (WVACEEC)

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WV Advisory Council for the Education of Exceptional Children (WVACEEC)

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Advisory Council -The West Virginia Advisory Council for the Education of Exceptional Children (WVACEEC) is mandated by state Code §18-20-6 and charged in part with advising decision makers regarding the unmet needs of exceptional children which includes students with disabilities and students identified as gifted. The mission adopted by the Council is to influence the State Board of Education, public policy makers, and West Virginia's citizens in ways that continuously improve educational outcomes for children with exceptionalities.

The Council meets monthly in various locations across the state to seek input and gain information about programs and services for exceptional students. Local media, local and regional special education administrators, Parent Educator Resource Centers, principals, superintendents, school board members, school improvement councils, faculty senates and community members are informed about scheduled meetings. The Council produces an annual report to the WV Board of Education with recommendations.

Susan A. White, Executive Director, Council Staff:
sawhite2012@gmail.com, 304-796-4937, or 304-222-5885(c)
Kristin Clendinning, Adm. Assistant, haas22@marshall.edu, 304-746-8966 x 68966 or 800-642-9842 x 68966

Marshall University Graduate College
100 Angus E. Peyton Dr.
South Charleston, WV 25303

Council Members
Michelle Norweck, Chair, Cabell Co. Fair Shake Network, Parent
Jeff McCroskey, Community Access, Community Transition Specialist
Rebecca Derrenge, WVDE, McKinney Vento, Homeless Students Specialist
Patricia Homberg, WVDE, Executive Director Office of Special Education
Brenda Lamkin, WV Parent Training and Information, Parent
Ashley Mann, Monroe Co. Gifted Teacher, Parent
Kelly Miller, Lincoln Co. Parent
Dr. Conrae Lucas Adkins, Marshall University, Psychology Department

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WV Advisory Council for the Education of Exceptional Children (WVACEEC)

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Advisory Council -The West Virginia Advisory Council for the Education of Exceptional Children (WVACEEC) is mandated by state Code §18-20-6 and charged in part with advising decision makers regarding the unmet needs of exceptional children which includes students with disabilities and students identified as gifted.

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WELCOME TO WEST VIRGINIA PARENT TRAINING AND INFORMATION, INC.

The West Virginia Parent Training and Information, Inc. (WVPTI) is a 501(c)(3) non-profit parent organization committed to improving the lives and education of ALL children through a special emphasis on children and youth with all disabilities and special healthcare needs. We serve parents and families of a child or youth from birth to age twenty-six with special needs. We are committed to providing parents and families the tools to ensure that children, youth, and young adults with special needs lead enriched lives as full members of their schools and communities.
WV PTI IS A

For West Virginia Parents & Families United States Department of Education Office of Civil Rights
Questions and Answers for K-12 Public Schools in the Current Covid-19 Environment

United States Department of Education Office for Civil Rights.pdf

A Transition Guide to Postsecondary Education and Employment for Student and Youth Disabilities (New)

by Office of Special Education and Rehabilitative Services Department of Education, August 2020. Click Here: A Transition Guide to Postsecondary Education and Employment August 2020.pdf
Back to School Planning Guide (New)
West Virginia Parent Training and Information has a Back to School Planning Guide to help families as they are preparing for how their child with disabilities will be receiving the services and supports outlined in the IEPs or 504s.
Back To School Planning Guide 2020.pdf
Additional resources to help families with the process are linked below.

West Virginia Schools Re-entry Toolkit COVID-19 Guidance by WV Department of Education and WV Department of Health and Human Resources: WV Virginia Schools Re-entry Toolkit.pdf

WV Department of Education Special Education Tips and Suggestions: WV Department of Education Special Education Information.pdf

WV Department of Education's Providing a Free Appropriate Public Education (FAPE) During School Closure due to COVID-19 Pandemic Through Distance Learning Frequently Asked Questions: Frequently Asked Questions.pdf

WV Department of Education's Providing a Free Appropriate Public Education (FAPE) During School Closure due to COVID-19 Pandemic Frequently Asked Questions About In-Person and/or Blended Instruction/Virtual Options/Remote Learning/Homebound: QuestionsAboutFAPE.pdf

New Information from Office of Special Education Programs (OSEP)

The Office of Special Education Programs (OSEP) provided Q & A documents to help you with your inquiries concerning procedural safeguards and Dispute Resolutions in Part B and Part C.

IDEA Part B Dispute Resolution Procedures IDEA Part C Dispute Resolution Procedures

Questions and Answers IDEA Part B Procedural Safeguards

IDEA Part C Procedural Safeguards

Joint Statement on Serving Students with Disabilities during the COVID-19 with , Executive Director, Office of Special Education and Student Support, Brenda Lamkin , Executive Director, West Virginia Parent Training and Information, and Susan White , Executive Director, West Virginia Advisory Council for the Education of Exceptional Children. Joint Statement on Serving Students with Disabilities during the COVID-19 Outbreak.pdf

Resources for Parents and Caregivers during COVID-19
West Virginia Parent Training and Information is continually posting resources on Facebook for families of children and youth, including those with special needs, that can be helpful while we all respond to COVID-19 crisis. Please follow us for new resources every day. Please click on the Facebook link at the top right of this page.
COVID-19 and Special Education
Parents and Caregivers are learning to live a new normal with children, youth and young adults home. Schools are working to identify and provide virtual and other online learning options; this is even more challenging for students with disabilities who receive special education, related services and who have a right to a free, appropriate public education (FAPE) under the federal Individuals with Disabilities Education Act (IDEA). There are several guidance documents and websites that may be helpful to parents, caregivers and educators. Click on the tab at the top of the page to View COVID-19 Resources.

Information tailored to families and family-serving organizations can be found at the Center for Parent Information and Resources (CPIR): https://www.parentcenterhub. org/coronavirus-resources/
COVID-19 Updates (State)
WV Department of Education (WVDE) Special Education & Student Support: https://wvde.us/covid19/resources/

Special Education & Student Support Resources for Families & Educators:
https://wvde.us/wp-content/uploads/2020/03/SpecialEducation-StudentSupport-FamiliesEducators_final.pdf
Free Appropriate Public Education for Distance Learning - Frequently Asked Questions:

https://wvde.us/wp-content/uploads/2020/04/COVID-SpecialEducation-FAQs-v3.pdf

Resources for Parents and Teachers from WVDE: Resources for Parents and Teachers from WVDE.pdf

Virtual School Counseling Resources: Virtual School Counseling Resources.pdf

For other resources, please click the tab at the top of page titled View COVID-19 Resources.

West Virginia Parent Training and Information began in 1991 as a grass-roots efforts of parents, professionals and community leaders determined to provide information, support and resources for parents of children with disabilities and special healthcare needs. WV PTI strives to empower parents and families by strengthening the parents' role.

WV Parent Training and Information Center ensures that parents of children and youth (0-26} with disabilities receive information on their rights, responsibilities, and protections under the Individuals with Disabilities Education Act (IDEA} to develop the skills necessary to be effective participants in the planning and decision making relating to early intervention, education, and transitional services.

WVPTI is the federally designated Parent Training and Information Center for the State of West Virginia. As the state PTI, we have access to state of the art information and materials developed by some of the best experts in the field of disabilities and education law. Pat Haberbosch, the previous Executive Director of WVPTI Inc., (25 years) devoted her life to helping families of children with disabilities. The current Executive Director of WVPTI Inc., is Brenda Lamkin who has worked for WVPTI for fifteen years and has completed her M. Ed. Since our initial funding in 1991, we have trained parents and other professionals on a variety of topics, such as: Basic Rights, Special Education Laws, the Individuals with Disabilities Education Act (IDEA), Section 504 of the Rehabilitation Act, Individual Education Program (IEP), Transition, Assistive Technology, Effective Communication, Family Engagement and other topics.

Family Voices - West Virgina

West Virginia Parent Training and Information, Inc. is the State Affiliate Organization for Family Voices in WV. Family Voices of WV is a program that services parents and families who have children and youth with special health care needs. We provide information on advocating for your child in the health care system and refer you to resources that are available in West Virginia that provide information on health care.

West Virginia Parent Training and Information (WVPTI) is the Family Voices State Affiliate Organization (SAO) in West Virginia.

Family Voices is a national, nonprofit, family-led organization promoting quality health care for all children and youth, particularly those with special health care needs. Working with family leaders and professional partners at the local, state, regional, and national levels since 1992, Family Voices has brought a respected family perspective to improving health care programs and policies and ensuring that health care systems include, listen to, and honor the voices of families.

To learn more about Family Voices, please visit the Family Voices website using the following link: www.familyvoices.org/

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The West Virginia Parent Training and Information, Inc. (WVPTI) is a 501(c)(3) non-profit parent organization committed to improving the lives and education of ALL children through a special emphasis on children and youth with all disabilities and special healthcare needs. We serve parents and families of a child or youth from birth to age twenty-six with special needs.

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What is Right From The Start?

Right From The Start (RFTS) is a statewide program that helps West Virginia mothers and their babies lead healthier lives by offering home visitation services with a Designated Care Coordinator (registered nurse or licensed social worker)

Our services are FREE and support mothers, their new babies and their families by helping create a safe, nurturing home. Our Designated Care Coordinators discuss any questions and concerns you may have and help you find the resources you need.

How Do I Become Part of the Program?

To be eligible for Right From The Start, you need to:

All pregnant teens aged 19 or younger are eligible for medical coverage through the OMCFH regardless of family income if they are uninsured for maternity care.

If you were denied Medicaid and you are uninsured for maternity care, DHHR will forward your application to the OMCFH to see if you qualify for prenatal coverage with the Right From The Start Maternity Services Project.

To see if you are Medicaid eligible, you can apply for the Medicaid by:

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What is Right From The Start? Right From The Start (RFTS) is a statewide program that helps West Virginia mothers and their babies lead healthier lives by offering home visitation services with a Designated Care Coordinator (registered nurse or licensed social worker) Our services are FREE and support mothers, their new babies and their families by helping create a safe, nurturing home.

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Help Me Grow is a FREE referral service that connects families with critical developmental resources for their children birth through five years. The goal of Help Me Grow is to successfully identify children at-risk and link them to the help they need.

Help Me Grow offers parents and medical providers:

Referral line - Get expert advice and a referral to community resources to help support early childhood development; and

Ages and Stages Screening Questionnaire - 3 (ASQ-3)TM - A developmental screening tool that's endorsed by West Virginia Chapter of the American Academy of Pediatrics and available upon request.

Help Me Grow is part of a national program that connects families to resources right here in West Virginia. The program is funded by the Office of Maternal, Child and Family Health, West Virginia Home Visitation Program.

Who needs developmental screenings?

To ensure healthy behavior and development, all children from birth through age five should have regular screenings.
Learn More

What is proper development?

Think your child may be missing important milestones? We'll help you identify the warning signs of developmental delay.
Learn More

The Ages and Stages Questionnaire

Our screening questionnaire is endorsed by the West Virginia Chapter of American Academy of Pediatrics and helps parents understand proper childhood development.
Learn More

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Help Me Grow is a FREE referral service that connects families with critical developmental resources for their children birth through five years. The goal of Help Me Grow is to successfully identify children at-risk and link them to the help they need.

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WV Birth to Three - Early Intervention - Home page