Special Education and Disability Resources Page
from The Cure Our Children Foundation

Lainie, Alon, Lilah and Barry Sugarman Alon Sugarman During Chemotherapy


In Honor of Alon Sugarman,
13 Years Old, Alive and Well

This site maintained by Barry Sugarman, B.S.ENGR.
Father of Alon Sugarman, Diagnosed March 6, 1998
with Ewing's Sarcoma of the Distal Femur.
E-Mail to: barry@cureourchildren.org
 **This guide has been written for educational purposes only, it cannot be used for diagnosing or treating a health problem or a disease. If you have or suspect that you or your child may have a health problem, you should consult your doctor.  Additionally, this site is not intended to provide legal advice or legal opinions.  If you need legal advice or opinions, please consult your attorney.** 

Original Article: An Overview of Special Education Services
 Available to Cancer and Leukemia Patients

by Barry Sugarman, B.S.ENGR., President
The Cure Our Children Foundation

Special Thanks to Lori Milstein, Mark Ross, and Izac Ross

    Patients being treated for Ewing's Sarcoma and any other cancer or Leukemia by themselves or through their parents are entitled to seek and receive special education services for their children before during and after treatment.  The legal qualification is termed "other health impairment" (OHI is the abbreviation).  Special Education and related services and aids designed to meet patients' unique needs and prepare them for employment and independent living are provided for by federal law under the Individuals with Disabilities in Education Act Amendments of 1997 (IDEA), United States Code Title 20, beginning at section 1400.  Although there are many rights and entitlements that are available under this act, the reality is that you have to fight for everything that you get because Congress did not fully fund this law, and the schools are always looking for reasons to deny services or reduce them to amounts that their budgets can withstand.

    Students are entitled to a Free and Appropriate Public Education (FAPE) which may include a variety of services to the patient including teaching and tutoring in the hospital, home, institutions, and other settings.  Included in the law are provisions for free assistive technology, modified working schedules and accommodations that are individualized.  Related services are also required by law to be provided free of charge to parents, and these may include transportation, and such developmental, corrective, and other supportive services (including speech-language pathology and audiology services, psychological services, physical and occupational therapy, recreation, including therapeutic recreation, social work services, counseling services, including rehabilitation counseling, orientation and mobility services.  Additionally,  medical services for diagnostic and evaluation purposes are available.

    The first step is to formally request an Individualized Education Program (IEP) in writing by notifying your school and school district of this request.  An example letter requesting an IEP and free educational services is here. There are numerous procedures that are triggered by this request including convening of an IEP program team, and the drafting of an appropriate IEP that provides the cancer patient with all of the education services needed to meet the federal requirements.  Parents are required by law to be a part of the IEP team.  Getting to a workable IEP that really provides services is involved, and is usually a battle, but many court cases have shown that a wide variety of services are available to students who require modification of regular school.  The parents must be given notice and consent to an evaluation and generation of an IEP, and there are specific topics and goals that must be covered in an IEP.  Additionally, there must be a provision for a review and update to the IEP, and the parents may also request an IEP revision which must be heeded by the school district.

    IDEA also specifically provides for physical education and transition services including physical and occupational therapy as appropriate, and as determined by the IEP team.  IDEA also specifically requires school districts to utilize the "least restrictive environment" whenever possible.  In other words, removal from the regular classroom is a last resort, and the legal requirement is to aid the child in the regular classroom and provide the needed services and assistance there if appropriate.

    There are also provisions for the schools to remove a child and place them in a private school at public expense if this is the most appropriate.  And there is a provision for the parents to place the children in a private school without the consent of the school district if the parent disagrees with the IEP; however, be advised that there are strict notice requirements and other requirements in the law.  You should consult an attorney if you wish to utilize this section of the law.

    The IDEA also provides numerous procedures for appeal of an IEP or if you are not getting what you want from a program.  A request for a mediation and/or a due process hearing can be made to appeal any type of decision that is adverse.  Attorney's fees are available to prevailing parties in appeals.

    The above is just a basic overview of IDEA.  It is highly recommended that you view the links listed below and read the IDEA statutes and articles by advocates and attorneys.  We wish all of you well in your endeavors to assist your cancer patients in receiving a quality Free Appropriate Education...Barry Sugarman, B.S.ENGR., President, The Cure Our Children Foundation


Special Education Resources:

Wright's Law Education Advocates Home Page, Phone: 804-257-0857  Wright's Law IDEA Statute and Regulations
Wright's Law Case Pleadings and Legal Documents
Edlaw.net Resource Site, Phone 954-966-4489, FAX 954-966-8561
Mark Shehan's Special Education Page
Reed Martin's Special Education Home Page, Phone: 304-598-3406, Fax: 304-598-3512
SpecialEdLaw.net from The Center for Education Rights, Phone 610-499-9280, Fax:610-499-9282
AACTE Education Policy Clearinghouse, Phone: 202-293-2450
U.S. Department of Education Mailing List--Reports and Grant Opportunities
                        Phone: 1-800-USA-LEARN, TTY: 1-800-437-0833, Fax: 202-401-0689
Tech Connections Direct, People and Assistive Technology, Phone: 877-835-7335
AbilityHub.com Assistive Technologies, Phone:  802-775 1993, Fax: 802-773 1604
ISER, Internet Special Education Resources, Phone:  301-230-9010 or 301-649-6207 , Fax: 240-465-0050
DIMENET, Disabled Individuals Movement for Equality Computer Network, Phone:  937-237-8501
Division for Early Childhood, Phone: 406-243-5898, Fax: 406-243-4730
SERI - Special Education Resources on the Internet
Eduhound, Phone: 860-875-8821
The Council of Parent Attorneys and Advocates, Phone: 954-966-4489, FAX: 954-966-8561
University of Virginia Special Ed. Resources, Phone: 804-924-3332, Fax: 804-924-0888
The Council for Exceptional Children, Toll-free: 1-888-CEC-SPED,
           Local Phone 703-620-3660 , TTY (text only) 703-264-9446, Fax 703-264-9494
IDEA Practices Page, Toll Free: 877-CEC-IDEA, TDD: 703-264-9480, FAX 703- 264-1637
Federal Government IDEA Page
Learning Disabilities Online, Phone: 1-800-343-5540, Fax: 201-652-1973 
National Center for Learning Disabilities, Phone: 212-545-7510, Fax: 212-545-9665
American Library Association Roads to Learning, Phone: 1-800-545-2433, 1-4397
The Instant Access Treasure Chest, Phone: 804-828-8470, FAX 804-828-9001
National Ctr.  to Improve Practice in Special Ed., Phone: 800-793-5076 , FAX 412-741-0609 
Ohio Federation Council for Exceptional Children, Phone: 800-374-2806,
FAX 614-383-6421, TDD: 614-382-5452
Internet Resources for Special Children
Protection and Advocacy, Phone: 202-408-9514, Fax: 202-408-9520 
Learning Disabilities Association, Phone: 412- 341-1515, FAX: 412-344-0224
Canada Special Education Page, Phone: 613-235-9550, FAX: 235-3807
Institute for Special Education University of Fribourg/Switzerland, 
Phone: 011 41 26 300 77 00, FAX: 011 41 26 300 97 49
Special Needs Advocate for Parents, Phone: 888-310-9889, FAX: 310-201-9889
Consortium for Appropriate Dispute Resolution is Special Education, Phone: 541-686-5060
FAX: 541-686-5063
Yahoo Special Education Resources Links
Google Directory of Special Education Resources
Kerr Law Office, Relay Service: 800-627-3529, Phone 651-552-4900
Assistive and Adaptive Computing Technology In Special Education

State Special Education Departments:

State Education Law Resources from The Council of Parent Advocates, Phone 202-544-2210
California Department of Education, Special Education Division
           Phone: 916-445-4613; FAX: 916-327-3516; TTY: 916-327-3678 
New York Department of Education, Special Education Division
Phone: 518-473-2878, Fax 518-474-2219
Florida Department of Education, then choose Special Education or Vocational Rehabilitation
Janet Adams, Phone: 850-487-3164, SUNCOM 277-3164
            or Jane Silveria Phone: 850-487-1603, SUNCOM 277-1603
Illinois Department of Education, Special Education Division, Phone: 217-782-5589
Nevada Department of Education, Education Equity Division, Phone: 775-687-9171, Fax 775-687-9123
Texas Department of Education, Special Education Division
            Debbie Blue, Phone: 512-475-3488, FAX: 512-463-9176

Disabilities Resources:

Children with Disabilities Information Web Site, Phone: 1-800-851-3420 or 301-519-5500
TTY: 1-877-712-9279 or  301-947-8374
Social Security Disability Page, Phone: 410-965-0945, FAX: 410-965-0696
National Parent Network on Disabilities, Phone: 703-684-6763, FAX: 703-836-1232
Department of Justice Americans with Disabilities Act Page, Phone: 800-514-0301,
TDD: 800-514-0383
Americans with Disabilities Act Document Center, Phone: 1-800-949-4232. 
The National Information Center for Children and Youth with Disabilities, 
Phone/TTY: 1-800-695-0285 and 202 884-8200, FAX: 202-884-844
Disabilities Rights Advocates, Phone: 510-451-8644, Fax: 510-451-8511, 
TTY: 510-451-8716
World Association for Persons with Disabilities, Phone: 405-672-4440 , FAX 405-672-4441 
National Council on Disability, Phone: 202-272-2004, FAX: 202-272-2022, 
TTY: 202-272-2074
Advocacy Inc., Phone/TDD: 1-800-252-9108 and 512-454-4816, FAX: 512-323-0902
Department of Labor--Office of Disability Employment Policy, Phone: 202-693-7880
or 202-376-6200, TTY: 202-693-7881 or 202-376-6205
Kids Together

This site last updated on November 14, 2003