What can I do for my child?
Learn. And act.
Educate yourself about brachial plexus or brain injuries, or cerebral palsy. Ask questions of your child’s doctors, pay attention to the answers, and then do some research, both on the injuries and to locate the most knowledgeable healthcare providers. With the existence of the Internet and online search engines you are far better able to locate information than parents years ago whose only recourse was the card catalog at the public library. If you find something that appears to differ from what your doctor has said, go back and check. But do it politely. Just because something appears on your computer screen in response to your search query doesn’t automatically make the answer authoritative and accurate.
You can, and probably should, talk with other parents who have already gone through the first stages of responding to the same type of injuries. They can be an invaluable resource in terms of information, and emotional support as well.
Action goes hand in hand with your education. You are not only your child’s advocate—asking the questions he or she is too young to ask, doing what is necessary to obtain the assistance your child is entitled to receive—but you are also the primary source of care. Besides acting outside the house, with doctors, and insurance companies, and government agencies, you have to act inside as well, overseeing the treatment your child needs and learning what you have to know in order to provide some of that care yourself.
How do I fight with insurance companies, Medicaid, etc., to get the medical care my child needs?
Vigorously.
All too often your insurance company is interested in its bottom line and would much prefer not to have to pay all the benefits to which you are entitled under the policy. Never take the word of a claims adjuster or anyone else employed by the insurance company about what your rights are and what your policy covers. Find out for yourself. Get a copy of the policy and read it carefully. Then ask questions and keep on asking until you get a satisfactory answer. But remember, a “satisfactory” answer isn’t necessarily one that agrees with the result you want. You may not be happy with the answer, but if it’s the right one under the policy, then you’ll just have to deal with it.
Government bureaucracies are much the same way, sometimes even more so. Ask questions. Find out what laws (Federal and/or state) govern the type of aid you’re seeking. Find out what state or Federal regulations govern the process of providing the aid. Get copes of everything, and read everything carefully.
Although there’s no way we can give you advice that will guarantee a victory in whatever insurance or government agency battle you may have to wage, click here for some more suggestions that we hope will increase the odds in your favor. [Insert link to __]
Is my child entitled to educational assistance from our school district?
Two Federal statutes require that a child with a demonstrable disability, whether a brachial plexus injury, a brain injury, or cerebral palsy, must not be discriminated against in receiving an education. Indeed, as a rule of thumb, your school must affirmatively provide for your child’s education on a par with children who do not have disabilities.
Those two statutes are the Individuals with Disabilities Education Act, and Section 504 of the Rehabilitation Act of 1973.
One or both statutes may apply to your child, but please do not start the process of finding out which statute is applicable with the assumption that your school has a duty to provide your child with whatever conceivable resources might be necessary to provide him or her with the best possible education. And all just because you say so or your doctor says so.
Each statute sets the standards which determine whether your child is eligible for benefits under the law. Each statute has regulations issued by the appropriate Federal agency which govern how the law is applied, i.e., how eligibility is determined, what goods or services have to be provided, etc.
For further information on the Individuals with Disabilities Education Act, and its requirement for Individualized Education Plans, click here.
For further information on Section 504, click here.
How do I get a handicap sticker or placard for our car?
There are a variety of ways a state may use to indicate that a handicapped person is an occupant or operator of a car and is therefore entitled to use handicap parking spaces. Sometimes the license plate will indicate that fact (often with a stylized person-in-a-wheelchair symbol). Sometimes there will be a sticker on the bumper. Sometimes there will be a placard to hang from the rear view mirror.
In trying to answer this question, our research in Kansas and Missouri didn’t find anything that expressly addressed the issue of whether a handicap placard or license plate could be issued where the disabled person is a baby or young child. While a baby or young child might not be able to walk the specified distance without stopping, that tends to be true of most children, regardless of disability. So before you try to get a handicap plate or placard for a child, directly check with your state’s Department of Motor Vehicles, to find out whether it’s even possible.
Missouri Placards
In Missouri, a placard is the most frequently used method. Since most vehicles will have “mixed” use, i.e., sometimes a handicapped person will be in the vehicle and sometimes not, the placard is simply kept in the car, attached to the rear view mirror when parking, and removed when leaving. It is obtained from the Missouri Department of Revenue, Division of Motor Vehicles.
Note that the placard is issued to the handicapped person, and not to the owner or driver of the vehicle. Thus, parking in a handicap zone when the handicapped person is not being transported is a crime, for which you can be ticketed and punished.
A temporary placard is obtainable for physical disabilities that are unlikely to last more than 180 days. A permanent physical disability is just that. The law defines a physical disability as being blind or:
1. The person cannot walk 50 feet without stopping to rest;
2. The person cannot walk without the use of, or assistance from, a brace, cane, crutch, another person, prosthetic device, wheelchair, or other assistive device;
3. The person is restricted by lung disease to such an extent that the person’s forced respiratory expiratory volume for one second, when measured by spirometry, is less than one liter, or the arterial oxygen tension is less than 60 mm/Hg on room air at rest;
4. The person uses portable oxygen;
5. The person has a cardiac condition to the extent that the person’s functional limitations are classified in severity as Class III or Class IV according to the standards set by the American Heart Association; or
6. The person is severely limited in the ability to walk due to an arthritic, neurological, or orthopedic condition.
A temporary placard will have an expiration date; the permanent placard is renewable every four years. There is no charge for the placards.
For detailed information on temporary placards, go to:
http://dor.mo.gov/mvdl/motorv/placards/temporary.htm
For detailed information on permanent placards, go to:
http://dor.mo.gov/mvdl/motorv/placards/permanent.htm
Kansas Placards and Plates
In Kansas, disabled persons can obtain a handicap plate for the vehicle, or placards which can be used in any vehicle transporting the disabled person. The disabled person also has to carry an identification card because even if you have the placard showing, but you don’t have the card (thereby proving the placard was lawfully issued), you don’t have the right to use handicap parking. The disability definitions are essentially the same as Missouri, although Kansas refers to a “severe visual impairment” and the walking distance standard is 100 feet instead of 50 feet.
Click here for the Kansas online form for obtaining a handicap placard or plate:
http://www.ksrevenue.org/pdf/forms/tr159.pdf
An interesting side note is that in Kansas, if there is a valid handicap plate or placard on the vehicle, you can park in metered parking for up to twenty four hours without incurring a fine.
What is a brachial plexus injury?
The brachial plexus is a network of nerves running from the spine, at the back of the neck, down through the armpit and into the nerves of the upper arms. An injury occurs when these nerves are stretched or torn (wholly severed or not), or otherwise damaged. The injury can occur at any time in your life, for example, in an automobile accident, but at birth it is most often caused by a problem with the baby’s shoulder getting caught, and too much force being applied to get the shoulder free. For more information click here.
How will a brachial plexus injury affect my child?
In general, a brachial plexus injury will limit sensation and movements of your child’s shoulder, arm, wrist, hand and fingers. As an infant, this may make it difficult for your child to hold a bottle or crawl. Learning to sit and walk may be challenging because of balance problems from the affected side. Toilet training and dressing may be difficult. There may be limitations in participating in sports, hobbies and occupations that require good use of both hands and arms. There may be pain, muscle aches, arthritis, scoliosis, dislocation and other joint, bone and muscle problems, although most patients will have some limited degree of mobility and strength in the affected arm. For more information click here.
My baby isn’t moving her arm, and the doctor said to give her time. How much time?
As a general rule, if there is a brachial plexus injury during birth, and the child’s body is going to heal itself naturally, that will occur in the first three to four months. This isn’t an absolute for every child, so don’t make an assumption that the best course of action is to do nothing at all in those first few months.
Think for a moment of what your arm would be like if you literally did not move it at all for four months. How much strength or dexterity do you think you would have? Probably very little to none. So even if the doctor wants you to give her time to heal, ask your doctor what you can do so that she doesn’t lose ground. Are there exercises you can do or help your child to do? Are there things you should not do? For further information, click here.
Did I do anything to cause my baby’s brachial plexus injury?
Relax and stop beating up on yourself. Doing so won’t create the positive frame of mind you need to be able to effectively help your child. The likelihood that anything you intentionally did or did not do during pregnancy caused or helped to cause the injury is probably just about as likely as you winning your favorite lottery four times in a row. For further information on brachial plexus injury causes, click here.
Will the Brachial Plexus Injuries Go Away?
Some minor brachial plexus injuries may resolve completely with time. Other injuries will be permanent. The more severe the original injury, the more likely there will be permanent damage. And don’t let appearances fool you. Sometimes a child will learn to compensate for the injury with other movements, or be able to perform most tasks of living, thereby creating the perception that the injury has been resolved. Don’t assume that is so. Many children with these injuries will have some subtle signs of the injury throughout life during particular movements or they may experience a small deficit in range of motion of the affected arm. Others will have more severe problems.
To be honest, unless the brachial plexus injuries are very minor, the odds are that they will continue to have an effect on your child throughout his or her life. Be sure to have a brachial plexus specialist examine your child initially, and thereafter as often as his or her condition warrants, so that you can be sure everything possible is being done.
For further information on long term consequences of brachial plexus injuries, click here.