Fitting Into the System

Although hospitals and rehabilitation programs have special programs for children with brain injuries, this is often not the case in other agencies and organizations. In fact, many programs and services in local communities have very little experience with brain injury, though they have lots of experience with children who have other special health care needs. Children with brain injuries and those with other special health care conditions have some common needs for:

Many of the agencies and programs do not mention "traumatic brain injury" in their descriptions or written information. This means that your child may be the first with a brain injury to apply for services, and it may be up to you to "make the case" for eligibility. Programs have many different requirements for eligibility, including:

How your child's diagnosis is worded can affect how others judge your child's eligibility. It is important that your child's written diagnosis be accurate and up to date. As your child's condition changes during the recovery period, the written diagnosis may be revised by your child's doctor.

Your state's program for individuals with developmental disabilities is one of the programs that does not specifically mention traumatic brain injury in its eligibility criteria. However, it offers many services which your child may need. To be eligible, your child's condition must meet the definition of a developmental disability. A developmental disability is defined by federal law (PL 101-496) as severe, chronic disabilities due to mental or physical impairment, or a combination of both. The disabilities must be present before the age of 22, be likely to continue indefinitely, and result in the need for individually planned and coordinated services over an extended period of time. The disabilities must cause significant limitations in three or more of the following areas:

If you can show that your child meets this definition, your child may be eligible for services under your state's developmental disabilities program, even though brain injury is not specifically listed in the program's description. Your state may have a more specific definition of developmental disability. For more information about these services in New Hampshire, contact your Area Agency for Developmental Services at http://www.bianh.org/resource/agencies.htm.

You can also contact the National Association of Developmental Disabilities Councils (NADDC), which can give you information on your state council. The address is NADDC, 1234 Massachusetts Ave. NW, Ste. 103, Washington DC, 20005. The telephone number is (202) 347-1234.

Having demonstrated your child's eligibility, you now need to determine if the program is a "good fit" for your child. Many developmental disability programs are created for children with birth-related conditions, such as cerebral palsy and mental retardation. You may feel that your child does not belong there. Before shutting the door on this resource, consider two things:

  1. Can the program be modified to meet your child's special needs?
  2. If the existing program is not appropriate, can it reimburse or fund services in another location that would be more appropriate?

Here are some "buzz words" to look for. Think of these terms as gateways, not barriers, to joining programs. They are general categories that are used to include many diagnoses.

You may also come across the terms congenital, pre-existing, and acquired. Congenital means from or before the time of birth. Down's syndrome is classified as a congenital genetic disorder, as it occurs before the birth of a child. Pre-existing has different meanings depending on who is using the word. For insurance purposes, it means a condition that was present before the insurance coverage begins. Acquired usually refers to something that happens to a person at any point after birth, such as an acquired brain injury that is the result of a near drowning event or a car crash.

These conditions can stand by themselves or in combinations. For example, a child may have visual impairments from birth (congenital) that cause developmental delays. If this same child falls and has a brain injury (acquired), her original visual impairments and developmental delays would be considered pre-existing. She might have additional delays or impairments as the result of her acquired injury.

You can see how the right wording can make all the difference. Here are some questions to ask when deciding how appropriate a program is for your child:

  1. Does the program have any experience with traumatic brain injury?
  2. Do the program's staff members understand how a brain injury is different from other disabilities?
  3. What are the ages of most children in the program?
  4. Does my child's age at the time of the injury affect eligibility?
  5. Does my child's current age affect eligibility?
  6. Does the program help children whose development has been delayed or interrupted?
  7. Does the program include children with medical complications, such as seizures, respiratory support, or physical disabilities?
  8. Does the program provide services for children needing help with speech and language?
  9. Does the program have experience with emotional or behavioral difficulties?

The school system is the main place for special services that are related to your child's education. The school is required by state and federal law to accommodate your child's educational needs. However, schools are only responsible for services that are "educationally necessary". Medical insurers are the resource for care that is considered "medically necessary".

Changes in behavior and learning are the most common long-term consequences of brain injury. They are caused by a medical condition that has educational consequences. Your job is to understand the eligibility criteria and learn the terminology (words) well enough to use both educational and medical resources to get the services your child needs.

For example, irritability and angry outbursts are common changes in students who have had brain injuries. A child with these behaviors disrupts the learning process for himself as well as classmates. This is clearly an educational issue, but since the child is behaving this way as a result of his brain injury, it is also a medical issue. As a parent, this can be approached several ways:

The point is to focus on a team effort between providers and payers, rather than completely exhausting one resource at a time. For more information about special educational services, see "Child's Educational Needs".