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Spinal Cord Injury Paralysis Resource Center

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Whether your child is a newborn or 17, it is important to start early to look at educational programs and services. There are a variety of educational programs to assist your child. Most fall under The Individuals with Disabilities Education Act (IDEA). Eligibility for these programs is based on the child's age and needs. IDEA is the major federal law that addresses the needs of children with disabilities.

There is a series of steps for referral and evaluation and they vary based on the age of the child. There are time frames that school systems must follow as outlined by federal law. In order to ensure that your child is ready to return to school and receive services immediately, it is important to make the referral in the early days of your child's recovery or diagnosis. Call your school's principal and notify them of your child's disability and ask the principal to convene an IEP team meeting for evaluation for services.

Some schools will want you to wait until your child has been discharged from the hospital. Inquire if the school system will accept the hospital’s assessments and recommendations--if they will, ask for communication to begin between the school and hospital. It is important to document all communication and if necessary, put your request in writing.

For children and teens, school is their "work". Many families feel the pressure of keeping their child caught up in school so they can continue on with their classmates the following school year. While your child is in the hospital and in a rehab center, school can come directly to them. Your child can be assigned a teacher and their class work can be sent from their school. Many rehab programs have set hours for class room instruction. These programs are called Home and Hospital instruction and do not fall under IDEA.

The Individuals with Disabilities Education Act (IDEA)
(IDEA) is a law created to ensure that all children with disabilities, regardless of the severity of their disability, have available a "free appropriate public education," including special education and related services. IDEA makes funds available for states and cities to assist in the education of infants, toddlers, preschoolers, children and youth with disabilities. In order to remain eligible for federal funds, states must ensure that children with disabilities receive a complete individual evaluation and assessment of their specific needs.

An Individualized Education Program (IEP) or an Individualized Family Services Plan (IFSP) will be drawn up for every child or youth found eligible for special education or early intervention services. An IEP is the contract between the school district and the student that lists the type and amount of services it will provide to the student. To the maximum extent appropriate, all children with disabilities are to be educated in the regular education environment.

Those receiving special education have the right to receive the related services, which may include transportation; speech pathology and audiology; psychological services; physical and occupational therapy; recreation, including therapeutic recreation; rehabilitation counseling; and medical services for diagnostic or evaluation purposes. Parents have the right to participate in all decisions related to identification, evaluation and placement of their child with a disability. Parents may appeal any decision concerning the education of their child. IDEA was reauthorized by Congress in 2004.

Among the changes in the law are provisions that all public elementary and secondary special education teachers be "highly qualified" as special education teachers, and there are new rules for children in private schools.

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Early Intervention or Part C: Birth to 3rd birthday
Paralysis can occur at any time during a person's life. Sometimes the disability is visible and can be diagnosed at birth, like a newborn with spina bifida. Other times it can take several years for a child to be diagnosed, such as the premature baby who is diagnosed with cerebral palsy at age two. There are many supports available for infants, toddlers, and preschoolers with disabilities, thanks to the federal law, Individuals with Disabilities Education Act (IDEA).

Services for very young children, from birth through age two, are called Early Intervention or Part C services (named for where they are described in IDEA). Early intervention is an effective way to help children catch up or address specific developmental concerns as soon as possible in their lives. Early intervention services are specifically designed to address the educational and developmental needs of very young children with disabilities and those who are experiencing developmental delays.

If you believe your infant or toddler can benefit from early intervention services, you can make a referral yourself or have your hospital or doctor refer your young child. The state is responsible for implementing early intervention programs for infants and toddlers. Call your state agency (see below for NICHCY info.) and explain that you want to find out about early intervention services for your child. Ask for the name of the office, a contact person, and the phone number in your area where you can find out more about the program and have your child screened for a disability or delay. Even though you know that your child has paralysis, they will still need to be screened so that necessary services will be identified.

The Reeve Foundation suggests that you use the state resource forms provided by the National Dissemination Center for Children with Disabilities (NICHCY). Using the drop down menu, select your home state. Look under the heading "Programs for Infants and Toddlers with Disabilities: Ages Birth through 3." The agency listed there is your state contact, the one responsible for overseeing early intervention in your state.

As with all areas of your child's health and education, keep a log of who you talked with, the date, time and any notes you may have taken. A marbled composition note book is an excellent way to keep track of your all calls.

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Special Education Services for Preschoolers with Disabilities: Ages 3 through 5
Services for preschool children (ages 3 through 5) are provided free of charge through the public school system. These services are available through the same law--the Individuals with Disabilities Education Act--that makes Early Intervention services (Part C of IDEA), and services for school-age children, in grades K through 12 (Part B of IDEA) available.

If your child was receiving Early Intervention services and they are still eligible, they will transition over to services for preschool, ages 3-5. Another way for very young children to become identified is through the local Child Find office. In keeping with IDEA, each state must have comprehensive systems in order to identify, locate, and evaluate children with disabilities residing in the state and who are in need of special education and related services. Your pediatrician or rehabilitation hospital may suggest that you contact the appropriate agency to have your child screened and/or evaluated to determine if your child qualifies for services. Such screenings cover a range of skill areas--vision and hearing, gross and fine motor skills, speech and language use, social and emotional behavior, and more. Even though you know your child has paralysis, they still need to go through the assessment and screening process.

You don't have to wait until someone suggests that your child be screened, though. If you are concerned about your child’s development, you can contact the local child find office (through your local school system) and arrange to have your child screened. These screenings are free of charge. The screenings are considered part of the state’s responsibility toward the well-being of its resident children.

The Reeve Foundation suggests that you use the state resource forms provided by the National Dissemination Center for Children with Disabilities (NICHCY). Using the drop down menu, select your home state. Look under the heading "Programs for Children with Disabilities: Ages 3 through 5." The agency listed there is your state contact, the one responsible for overseeing special education services for preschoolers in your state.

As with all areas of your child's health and education, keep a log of who you talked with, the date, time and any notes you may have taken. A marbled composition note book is an excellent way to keep track of your all calls.

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Individuals with Disabilities Education Act (IDEA), Kindergarten thru age 22
While IDEA covers ages birth through 22nd birthday, young children fall under the programs already covered. If you have a school age child who has spinal cord injury/ disease or another type of paralysis, your child may be eligible for services under IDEA. Critical to IDEA is the referral and evaluation phases. Before your child can receive any special education and related services (occupational therapy, physical therapy, nursing, assistive technology) they must be referred and evaluated. The school system has 60 days to complete the assessments so the quicker you make a referral, the faster your child can return to school.

If your child qualifies for services, an Individual Educational Plan will be drafted and the specific services goals, objectives and accommodations will be outlined. For many students with disabilities, the key to success in the classroom lies in having appropriate adaptations, accommodations, and modifications made to the instruction and other classroom activities. This is particularly true for students with paralysis. Examples of related services are: physical and occupational therapy, school health services, rehabilitation counseling. Supplementary aids and services might include an aide, a note taker or assistive technology.

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Transition to Adulthood
If your child is 16 or older, their IEP will include transition services that are intended to help them prepare to move from the world of school to adulthood. As part of transition planning, the IEP team will consider post-secondary education, vocational training or employment.

Often, the school’s IEP team is joined by a vocational rehabilitation counselor from the state. By planning the transition process, your teen will be prepared to move onto the next phase of their life and supports will be in place.

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Section 504 of the Rehabilitation Act of 1973
"No otherwise qualified individual with a disability in the United States . . . shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance . . ." Section 504 of the Rehabilitation Act of 1973

Not all children with disabilities qualify for services under IDEA. If your child is not eligible for IDEA, they may be eligible for protections by other laws, such as section 504 of the Rehabilitation Act of 1973. Section 504 is a civil rights law that prohibits discrimination on the basis of disability. This law applies to public elementary and secondary schools, among other entities.

Reeve Foundation Fact Sheets
- Vocational Rehabilitation Resources for Teens Transitioning into Adulthood

View the full list of Reeve Foundation Fact Sheets.

Office for Civil Rights
Section 504 is enforced by the Department of Education's Office for Civil Rights (OCR). Not surprisingly, OCR is a fabulous source of authoritative information on Section 504.

The three sites you'll want to check out in particular are:

- About disability discrimination and your rights
- Find the OCR regional office nearest you
- Technical assistance documents can be helpful when disability is involved

- National Dissemination Center for Children with Disabilities (NICHCY) 
- U.S. Department of Education’s Office of Civil Rights

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The ArcThe Arc is the world’s largest community based organization of and for people with intellectual and developmental disabilities. It provides an array of services and support for families and individuals and includes over 140,000 members affiliated through more than 850 state and local chapters across the nation. The Arc is devoted to promoting and improving supports and services for all people with intellectual and developmental disabilities.

Alliance for Parent CentersThe Technical Assistance ALLIANCE for Parent Centers (the ALLIANCE) is an innovative partnership of one national and six regional parent technical assistance centers, each funded by the U.S. Department of Education’s Office of Special Education Programs (OSEP). These seven projects comprise a unified technical assistance system for the purpose of developing, assisting, and coordinating the over 100 Parent Training and Information Centers (PTIs) and Community Parent Resource Centers (CPRCs) under the Individuals with Disabilities Education Act. The national and regional parent technical assistance centers work to strengthen the connections to the larger OSEP Technical Assistance and Dissemination Network and fortify partnerships between Parent Centers and education systems at local, state, and national levels.

Ability OnLineA computer friendship network where children and youth with disabilities or chronic illnesses connect to each other as well as to friends, family members, caregivers and supporters.

All Kids Can!A disabilities awareness program that helps students of all ages learn attitudes of acceptance, dignity and respect, especially toward those with disabilities.

A Reeve Foundation Fact Sheet on Children's and Teen Books (PDF)

Association of University Centers on Disabilities61 centers of excellence for developmental disabilities

Council for Exceptional ChildrenThe Council for Exceptional Children (CEC) is the largest international professional organization dedicated to improving the educational success of individuals with disabilities and/or gifts and talents. CEC advocates for appropriate governmental policies, sets professional standards, provides professional development, advocates for individuals with exceptionalities, and helps professionals obtain conditions and resources necessary for effective professional practice.

Camp Ronald McDonaldA fully accessible residential camp for kids with special needs located in the high Sierra.

Education/TrainingAssociation on Higher Education and Disability (AHEAD).

Easter SealsEaster Seals provides exceptional services, education, outreach, and advocacy so that people living with autism and other disabilities can live, learn, work and play in our communities.

Education Resources Information Center (ERIC)ERIC - the Education Resources Information Center - is an online digital library of education research and information. ERIC is sponsored by the Institute of Education Sciences (IES) of the U.S. Department of Education. ERIC provides ready access to education literature to support the use of educational research and information to improve practice in learning, teaching, educational decision-making, and research.

Family Voices Family Voices Information and Publications, and links to external resources can be located in a number of different ways. All of our materials are categorized by topic (format and audience coming soon) on the publications page. You may also use the "Search FV" Tool in the left column to find materials by keyword. Some materials are available for download, some for viewing online, and others are available by hardcopy only from our catalog. State specific information may be found by contacting a Family Voices State Network Member. Please contact the kidshealth@familyvoices.org if you require any assistance.

HEATHGeorge Washington University’s Heath Resource Center is a national clearinghouse on postsecondary education for people with disabilities. See their 2006 Financial Aid for Individuals with Disabilities

Island Dolphin CareAllows children to swim and play with dolphins.

Family Center on technology and DisabilityThe Family Center is a resource designed to support organizations and programs that work with families of children and youth with disabilities. We offer a range of information and services on the subject of assistive technologies. Whether you're an organization, a parent, an educator, or an interested friend, we hope you'll find information that supports you in your efforts to bring the highest quality education to children with disabilities.

FacingDisability.comFacing Disability is a web resource with more than 1,000 videos drawn from interviews of people with spinal cord injuries, their families, caregivers and experts. I know that this is a lot to ask, but we'd be so grateful for your help. I'm looking forward to discussing this link with you, and to answering any questions you may have.

Kosair Charities Center for Pediatric NeuroRecovery at the University of LouisvilleThe Kosair Charities Center for Pediatric NeuroRecovery provides activity-based therapies to promote recovery from neurologic injury in children; conducts research to enhance recovery; and trains families, practitioners and scientists to maximize recovery and improve the quality of life for children and their families. In short, we are here to help kids kick paralysis and through science have every reason to hope.

KidsComSite has plenty of games, message boards, kids chat, video game cheats, contests and prizes.

National information Clearinghouse for Children and Youth with Disabilities INICHCY) NICHCY is very pleased to offer you a wealth of information on disabilities! NICHCY stands for the National Dissemination Center for Children with Disabilities.

National Early Childhood Technical Assistance Center (NECTAC) Our mission: To strengthen service systems to ensure that children with disabilities (birth through 5 years) and their families receive and benefit from high quality, culturally appropriate and family-centered supports and services.

The Office of Special Education and Rehabilitative ServicesThe Office of Special Education and Rehabilitative Services (OSERS) is committed to improving results and outcomes for people with disabilities of all ages.

The Office of Special Education ProgramsSupports numerous programs that improve results for children.

Parents Helping Parents (PHP) Parents Helping Parents (PHP) provides lifetime guidance, supports and services to families of children with any special need and the professionals who serve them.Parents Helping Parents (PHP) provides lifetime guidance, supports and services to families of children with any special need and the professionals who serve them.

Parent Advocacy Coalition for Educational Rights (PACER) The mission of PACER Center (Parent Advocacy Coalition for Educational Rights) is to expand opportunities and enhance the quality of life of children and young adults with disabilities and their families, based on the concept of parents helping parents.

The Sibling Support Project The Sibling Support Project is a national effort dedicated to the life-long concerns of brothers and sisters of people who have special health, developmental, or mental health concerns.

Shriners Hospitals Children up to the age of 18 with orthopaedic conditions, burns, spinal cord injuries and cleft lip and palate are eligible for admission and receive all care in a family-centered environment at no charge – regardless of financial need.

Starlight Foundation for ChildrenDevelops multi-media and technology projects that empower seriously ill children to deal with the medical and emotional challenges they face on a daily basis.

Through the Looking GlassThe purpose of the National Parent-to-Parent Network at Through the Looking Glass is to connect parents, as well as those who are considering becoming parents, with others who may have shared similar experiences or faced common barriers as parents with disabilities.

U Can DoA site that emphasizes what you can do, not what you can’t. Promotes ‘ability awareness’ to help kids focus on what is possible, regardless of their challenges.

YahooligansBig list of links for all sorts of kids’ sites, including tons of places to go for games, sports, TV and movie stuff.

Paralysis Resource Center The Reeve Foundation Paralysis Resource Center Information Specialists are reachable business weekdays, Monday through Friday, toll-free at 800-539-7309 from 9:00 am to 5:00 pm ET. You may also schedule a call or send a message online.

Reeve Foundation Online Paralysis Community Connecting people living with paralysis, families, friends and caregivers so we can share support, experience, knowledge, and hope.

Quality of Life Grants DatabaseFind resources within the PRC Quality of Life Grants Database. Search by Zip Code, State or an Entire Category.

Library Books and VideosFind resources within the PRC library catalog.

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The Reeve Foundation Paralysis Resource Center Information Specialists are reachable business weekdays, Monday through Friday, toll-free at 800-539-7309 from 9:00 am to 5:00 pm Eastern U.S. Time. International callers use 973-467-8270. You may also schedule a call or send a message online.

This project was supported, in part by grant number 90PR3001, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy.