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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.**
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
