To most parents, this conversation sounds like babble. We, as parents, have to learn a new language and tasks so that we can successfully advocate for our children’s growth into society. To become effective advocates we must assume new roles as medical students, legal aides, educators, and therapists. This website will help you familiarize yourself with the new terms: www.specialedlaw.net/index.mv?action=glossary. Before long, this will all become second nature.

Advocating for your child is as important as finding the right brachial plexus injury (bpi) specialist. All the information you need is available on the internet and at state agencies. The two programs which you must become familiar with are Early Intervention (EI) and the Department of Education (DOE). Even after gathering all this information, the burden for advocating for your child can be overwhelming. There is support, frequently, through Parent Advisory Councils (PAC), or you may also choose to hire a special-education advocate and/or attorney. These services may be free through state run agencies, and your local EI program and educational agency will have listings of what is available.

EI is the first state agency that you should contact to begin advocating for your child. It is the state agency that provides services (physical therapy (PT), occupational therapy (OT), speech therapy (ST)) for your child from birth to age three. EI is the topic of Part C of the Individuals with Disabilities Education Act (IDEA) www.nectas.unc.edu/idea/idea.asp.

The hospital or birthing center where your child was born may have contact information for your local EI office. If not, this website www.ectac.org/default.asp has links under the Program for Infants and Toddlers with Disabilities, for the IDEA statute, your state contacts, and definitions of all the abbreviated terms with which you need to become familiar to get necessary services. Another good resource is the National Information Center for Children and Youth With Disabilities (NICHCY) www.nichcy.org.

The first three years of qualifying for services through EI, for most of our children, should be straightforward because the definition for qualifying is clear.  The child qualifies for EI – as defined in the IDEA Part C statute – if they are "diagnosed with a physical condition which has a high probability of resulting in developmental delay" (20 USC 1432(5)(A). Provide a written letter of necessity from your doctor referencing this law, and they cannot refuse services. Any bpi specialist will acknowledge that this injury has a high probability of resulting in developmental delay in both fine and gross motor skills. Although the child may not be behind in skills through the testing procedures - which often do not measure bilateral skills - they still qualify under this ruling. Make sure the doctor explains how predictable secondary complications will occur (scoliosis, limb asymmetry, pain, contracture, posturing, etc.) without services.

The type of modalities that are most beneficial is an issue for which you may have to fight (aquatic physical therapy (PT), range of motion (ROM), joint mobilization, Myofascial Release (MFR), Neurodevelopmental Therapy (NDT), etc.) Arm yourself with printouts about how these interventions are beneficial [e.g., Ramos, L.E. Zell, J.P. "Rehabilitation Program for Children with Brachial Plexus and Peripheral Nerve Injury." Seminars in Pediatric Neurology. Vol. 7, No. 1 2000 (March 2000):52-7.] The therapy should concentrate on maintaining passive ROM, increasing strength, and reaching developmental milestones (www.growingchild.com/milestones.html), such as stringing beads, building block towers, self help skills for grooming and dressing, simple puzzle manipulation, crawling, walking, maneuvering stairs, kicking and catching balls, hopping, jumping, balancing, page turning, pulling toys, etc.

The school system must have an Individualized Educational Program (IEP) in place by a child’s third birthday if he or she is found eligible. It is important to remember that EI is responsible for assisting in the transition to school-based services. "Medical versus Educational" (www.fcps.k12.va.us/DSSSE/PTOT/ptotedvsmed.htm) is the catch phrase that we usually have to understand when we begin our quest for therapy in the school system. It is the therapist’s responsibility to be able to apply useful therapeutic modality towards educational goals, like NDT and joint mobilization (www.coe.missouri.edu/~mocise/pubs/ta-6.htm).

Learning the laws and procedures are the most important tools for effective advocacy. The most useful website is www.wrightslaw.com. It contains links for nearly everything you might question, from legal rights to IEP format to procedural rights to Frequently Asked Questions (FAQ). State guidelines and programs can be found under State Materials at www.specialedlaw.net. This site also has the full PDF version of the federal CFR of IDEA. There is a Yahoo group for parents to learn and ask specific questions for support and networking http://groups.yahoo.com/group/IEP_guide/. Remember, also, to find out about the Parent Advisory Council (PAC) which should be available for parents of children in the school system with special needs.

There are some important differences between EI and the DOE programs. EI is generally run through the Department of Public Health, and the therapies they use may focus on medically-based outcomes. This can be quite a shock during the transition to school-based services, which specify that any therapy must be designed to provide educational benefit. Their argument is usually that a certain therapeutic modality that your child received in EI has no basis in the educational program because they do not address educational need. It is common, however, that the school therapist has never treated or followed a child with a bpi, and is unaware of the secondary ailments that will occur without proper intervention and hands-on modalities (deformity, pain, limb asymmetry, sensory integration issues, social self-awareness). The therapy services must be transferable to the school environment and include age appropriate annual goals such as: negotiating busy stairwells, buses, playground equipment (slides, monkey bars, climbing apparatus), balance, posture, ambulatory tasks (seating, walking; pushing and pulling open heavy doors, carrying books, utilizing backpacks, holding lunch trays), self-help and grooming (zippering, snapping, tying, dressing, independent restroom care), seat work (cutting, writing, folding, pencil sharpening, page turning), opening and closing (cartons, jars, bottles, pencil pouches), using chalkboards, lockers, field trips, and extracurricular activities (field day). All of these issues are relevant to the educational environment, and are essential to advancement in the general curriculum.

Richard Looby lives in Massachusetts with his wife Lisa and three small daughters, Kailyn, Julia and Sarah. Kailyn suffered a brachial plexus injury at birth in 1997. Richard has a B.S. degree in Chemistry, and currently works for Epix Medical developing new drugs for MRI diagnostic applications. He has a strong interest in the rights to services provided by IDEA, and has contributed resource information to the UBPN Awareness effort on the rights of families to services within the school system.