Acquired Brain Injury Network Of Pennsylvania, Inc.

"Empowering Survivors and Family Members to Rebuild Their Lives."

Please click on one of the following to read information concerning children with brain injury:










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The CASSP Newsletter for March 2007 on brain injury contains articles by parents and a neuropsychologist explaining the special problems children face because their brain development is not complete. It would be a good idea to read this newsletter. Children are not better off than adults when recovering from brain injury.

Please read everything in our Library because most information applies to both adults and children. Check Buy At Amazon for descriptions of many books on brain injury, some on pediatric brain injury. Go to Lash & Associates Publishing & Training for books for all ages and levels of expertise. You can find books for yourself and your child.

Get free brochures and books from the Department of Health Brain Injury Help Line at 1-866-412-4755. They are available from 7am to 7pm, Monday through Friday, and 9am to 3pm on Saturday. You can also order free literature (brochures only) from their website at Scroll down the Home Page and click on the HPA Publications logo. Choose brain injury in the drop down list. Next you will see a list of brochures. Quantities are up to 250 except where restricted. For single copies of books, you must call.

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Information on the Pennsylvania Elks Home Nurse Service is available at The Elks Nurses cover the state by counties. They go to your home and are able to help coordinate services, negotiate systems issues, advocate, guide, provide referrals, etc. to families who have a child with a disability and/or special health care need. This is a free program.

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Children must have brain injury rehabilitation, even more so than adults, because their subsequent development is at risk. Damage to a child may cause injury to parts of the brain that are not even in use until years later. Then, people will wonder what is wrong but forget that there was a brain injury years ago.

Children should be getting brain injury rehabilitation up to age 23 when brain maturity is complete. Medical Access will cover them until age 21 when they can apply for adult brain injury programs in Pennsylvania (Head Injury Program, CommCare Waiver).

You must have a primary care physician who understands the cognitive, behavorial and physical effects of brain injury and will continue to prescribe ongoing rehabilitation and monitoring because children can not recover on their own. This physician must be willing to fight Medicaid denials, and then the PA Health Law Project will supply a free lawyer to help you. Without the testimony of the physician, the PA Health Law Project cannot help you.

The child will need neuropsychological evaluations, neuropsychological therapy, occupational therapy, physical therapy, speech & language therapy, and the help of other professionals.

Medicaid is paying for Hyperbaric Oxygen Therapy in some states and it is available for private pay in non-medical settings. Check out the information on Hyperbaric Oxygen in our Library - the last section.

Pennsylvania provides Medical Access to all disabled children regardless of parent income. If your child has Medical Access but has difficulty in getting services, go to Complaints and look up Children's brain injury rehabilitation.

Pennsylvania may pay the private insurance premium for your child so that Medical Access doesn't pay all the bills:

If your child is covered by private insurance, Medical Access will provide secondary coverage and pick up any remaining bills. The state has a rule that Medical Access will pay the bill and then chase the child's private insurance company for reimbursement. Contact

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Children under age 21 in Pennsylvania are federally entitled to Medicaid reimbursement for services needed for brain injury rehabilitation. This federal mandate is found in the definitions section of the federal Medicaid Act, 42 United States Code, Section 1396 (d)(r)(5) and applies to all states that accept federal Medicaid money. Go to: 42/chapter 7/subchapter xix/section 1396d.

The relevant paragraph is found under 42 U.S.C. 1396 (d)(r) Early and periodic screening, diagnostic and treatment services (EPSDT).

Paragraph 5 reads: "(5) Such other necessary health care, diagnostic services, treatment, and other measures described in subsection (a) of this section to correct or ameliorate defects and physical and mental illnesses and conditions discovered by the screening services, whether or not such services are covered under the State Plan."

All necessary services for recovery should be provided under your child's Medical Assistance card (secondary to other health insurance).

Services should be provided in accordance with the recommendations in your child's neuropsychological evaluation and any recommendations for physical rebabilitation that might be provided by a physciatrist or other physician.

If you have difficulty in accessing the proper services, contact your child's physical health care provider and ask for the Special Needs Coordinator. If this does not bring results, contact Eric Ulsh in the state's Special Needs Unit at 717-705-8259 or

If you live in a fee-for-service county and you need help arranging services for your child, contact Jean Whitehead, R.N., at 866-588-9819 or

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Neuropsychological evaluations are essential for planning children's brain injury rehabilitation. Here is some information on arranging for reimbursement: 

          A. Employer/Private insurance - contact your liaison for network requirements, doctor's referral form, etc.

          B. Medicaid/Medical Access - under E.P.S.D.T. (the federal Early, Periodic Screening, Diagnosis and Treatment requirements) states must reimburse all necessary services. Contact Eric Ulsh in Harrisburg with the Special Needs Unit - at  to get directions. All disabled children are eligible for Medical Access in PA regardless of parent income - MA Hotline 800-543-7633 - and parents should be asked only for a few pay stubs, not asset information. Be careful to get the proper referrals for services. Be prepared to ask your physician for a letter of medical necessity. Insist on a denial letter because otherwise you can not appeal.

        C. Medical Access plus private coverage - child should get service under private coverage through those approved physicians. Try to find a physician who also accepts Medical Access. Medical Access must pay first and then chase the private insurer for reimbursement where applicable -  contact Be careful to get the proper referral.

        D. Where there is no neuropsychological evaluation/services provider on the Medical Access list of approved providers, the physical healthcare company negotiates an hourly rate and a specific number of hours with an outside provider. 

        E. IEP's should be based on a neuropsychological evaluation and the child's neuropsychologist should be consulting with the school as the child's needs change. If the school does not arrange for a neuropsychological evaluation, the parent should request that the school provide an independent evaluation for the child. Parent can say that the neuropsychological evaluation is needed as the basis for the IEP and the school psychologist is not trained to provide this evaluation. Go to the website for the citations. You might also contact Judith Gran of the Public Interest Law Center in Philadelphia at Also, contact the Disability Rights Network at 800-692-7443 because they have taken over the work of the Education Law Center. The parent education groups for special education are the PEAL Center for Western & Central PA and PEN or Parent Education Network serving Eastern PA  The Special Education Consult Line 800-879-2301 sends out materials. The Special Kids Network 877-986-4550 can also provide information.

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After brain injury, children need adjustments in their school programs, and need monitoring to at least age 21 for late appearing difficulties due to failure of the brain to develop properly. If you have trouble with your child's school, go to Complaints and look up Special Education.

On a more positive note, you should urge your Intermediate Unit to participate in the Brain S.T.E.P.S. program. Click here for contact information about existing participants:  Brain Injury School Re-entry Program team leaders and their contact information. Volunteers across the state are being trained to help schools serve children with brain injury.

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by Brenda Eagan Brown

Each year, over 3,000 of Pennsylvania's children survive a traumatic brain injury (TBI) significant enough to require hospitalization.  Many of these children are left with life-altering difficulties in physical, cognitive, or behavioral functioning.

Children who sustain a brain injury and then go back to school are often faced with great difficulty reintegrating and becoming successful learners again. This is due to a lack of understanding of brain injury among school staff, and thus the absence of appropriate educational planning, strategies, and techniques for the student with brain injury.

The Brain Injury Association of Pennsylvania, under contract from the PA Department of Health, has created the "Brain STEPS (Strategies Teaching Educators, Parents, and Students) School Re-entry Program" to provide in-service training, ongoing technical assistance and consistent consultation to educators of students with brain injury throughout the state.  

Based on a successful "Traumatic Brain Injury School Re-entry" model implemented in other states, Brain STEPS will establish Brain Injury Consulting Teams across Pennsylvania.  The team model of brain injury consultation for school reentry has been successfully implemented in Oregon, Kansas, Iowa, Tennessee and several other states. 

Brain STEPS Consulting Teams will be composed of professionals from varying disciplines. After extensive training in educating students with brain injury, these Team Members will act as consultants for the region in which they work, and may also provide basic training and resources to colleagues and families as needed. Team members trained in Pennsylvania will lead in-service trainings, share resources, and assist teachers with the design and implementation of learning interventions.  Brain STEPS will make sure that those who provide educational support to children with brain injury understand what is required to achieve optimal educational success.

Brain STEPS Consulting Teams will:

     Promote accurate identification and intervention by school personnel.
     Provide school personnel with coordinated training and consultation regarding identification, school re-entry planning, IEP development, intervention selection and implementation, long-term monitoring of students, and any other concerns professionals face in supporting students with brain injury.
     Serve as consistent and familiar contacts for hospital and rehabilitation personnel who work to successfully transition children back into schools.

For more information, contact:

Brenda Eagan Brown, Coordinator, at  or 724-944-6542.

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Search for transition material on the web and ask your school guidance department. Transition means preparing a child with disabilities to transition from high school to adult life. Transition services can begin at age 14.

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Children with brain injury are often provided with special education services that are not appropriate. Identical IEP's or individual education plans may be used for most children, in violation of federal law. Generally there is no experience in providing modified educational planning for children with brain injury because these children are routinely provided with services that are suitable for children with other conditions, such as mental illness, mental retardation, or learning disabilities.

For help in understanding your child's rights under federal law, go to and

For help with difficulties at your child's school, contact the state's Special Education Consult Line at  800-879-2301.

Information is also available at the website of the PA Training and Technical Assistance Institute of the PA Department of Education, Bureau of Special Education, at

Check with the Special Kids Network at or 800-986-4550, TTY 877-232-7640. Look in Complaints under Special Education for PEAL, PEN, and the Disability Rights Network (handles calls formerly accepted by the Education Law Center). 

If you are having difficulty reaching agreement with your school district, you can request a facilitator by asking the school district to contact the Office of Dispute Resolution. See Check this site for additional resources using various buttons including Resources and Links.


"Section 504 of the Rehabilitation Act, Section 794. Nondiscrimination under Federal grants and programs. (a) Promulgation of nondiscriminatory rules and regulations. No otherwise qualified individual with a disability in the United States, as defined in Sec. 705(20) of this title, 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 or under any program or activity conducted by any Executive agency or by the United States Postal Service...."


"The Americans with Disabilities Act, Section 12132. Discrimination. Subject to the provisions of this subchapter, no qualified individual with a disability shall, by reason of such disability, be excluded from participation in or be denied the benefits of the services, programs, or activities of a public entity, or be subjected to discrimination by any such entity."


The Individuals with Disabilities Education Act. "20 U.S.C. Section 1400(d) Purposes. The purposes of this title are--(1)(A) to ensure that all children with disabilities have available to them a free appropriae public education that emphasizes special education and related services designed to meet their unique needs and prepare them for further education, employment, and independent living."

The Individuals with Disabilities Education Act. "20 U.S.C. Section 1401(3)(A) In General. The term'child with a disability' means a child--(i) with mental retardation, hearing impairments (including deafness), speech or language impairments, visual impairments (including blindness), serious emotional disturbance (referred to in this title as 'emotional disturbance'), orthopedic impairments, autism, traumatic brain injury, other health impairments, or specific learning disabilities; and (ii) who, by reason therof, needs special education and related services."

The Individuals with Disabilities Education Act. "20 U.S.C. Section 1401(26) Related Services. (A) In General. The term 'related services' means transportation, and such developmental, corrective, and other supportive services (including speech-language pathology and audiology services, interpreting services, psychological services, physical and occupational therapy, recreation, including therapeutic recreation, social work services, school nurse services designed to enable a child with a disability to receive a free appropriate public education as described in the individualized education program of the child, counseling services, including rehabilitation counseling, orientation and mobility services, and medical services, except that such medical services shall be for diagnostic and evaluation purposes only) as may be required to assist a child with a disability to benefit from special education, and includes the early identification and assessment of disabling conditions in children."

The Individuals with Disabilities Education Act. "20 U.S.C. Section 1401(30) Specific Learning Disability. (A) In General. The term 'specific learning disability' means a disorder in 1 or more of the basic psychological processes involved in understanding or in using language, spoken or written, which disorder may manifest itself in the imperfect ability to listen, think, speak, read, write, spell, or do mathematical calculations. (B) Disorders Included. Such term includes such conditions as perceptual disabilities, brain injury, minimal brain dysfunction, dyslexia, and developmental aphasia."

The Individuals with Disabilities Education Act. "20 U.S.C. Section 1401(33) Supplementary Aids and Services. The term 'supplementary aids and services' means aids, services and other supports that are provided in regular education classes or other education-related settings to enable children with disabilities to be educated with non-disabled children to the maximum extent appropriate in accordance with section 1412(a)(5) of this title."

The Individuals with Disabilities Education Act. 20 U.S.C. Section 1414(a,b,c) concerns the rules for evaluations. (b)(6) Specific Learning Disabilities. (A) In General. Notwithstanding section 1407(b) of this title, when determining whether a child has a specific learning disability as defined in section 1401 of this title, a local educational agency shall not be required to take into consideration whether a child has a severe discrepancy between achievement and intellectual ability in oral expression, listening comprehension, written expression, basic reading skill, reading comprehension, mathematical calculation, or mathematical reasoning."

The Individuals with Disabilities Education Act. "20 U.S.C. Section 1414(d) Individualized Education Programs. (1) Definitions. (B)Individualized Educational Program Team. The term 'individualized education program team' pr 'IEP Team' means a group of individuals composed of- (vi) at the discretion of the parent or the agency, other individuals who have knowledge or special expertise regarding the child, including related services personnel as appropriate;..."

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