General FAQs

There are many ways to get involved and help support others. Anyone can participate in the message boards. You can join in or form a local support group. For help in starting or finding a local support group, email UBPN

If you would like to become involved in UBPN, we have many programs and committees. Please fill out this Volunteer form to let us know what you are interested in.

Fortunately the wait and see method is successful most of the time with birth palsies. However, too much optimism can lead to too much waiting and delay appropriate care. The timing and degree of muscle recovery in the first 3 to 9 months of life is very predictive of recovery and highlights those infants who may need nerve surgery. If your child has a Horner's syndrome (different size eye pupils, eyelid opening), then the prognosis is poor and you need to see a specialist in the first 3 months of life. Otherwise, you should monitor your child's ability to open his or her fingers, lift his/her arm to the shoulder level, and raise his or her hand to their mouth. Also, be certain to keep the range of motion of all joints full in order to prevent contracture or shoulder dislocation. It is very helpful to work with a therapist with experience with infants with brachial plexus birth palsies. If there is uncertainty, please seek consultation with a specialist in this area.

(UBPN thanks Dr. Peter Waters for contributing this answer)

Brachial plexus injuries have a wide spectrum of nerve impairment. Fortunately most begin anti-gravity recovery of shoulder, elbow, wrist and hand function in the first few months of life. If that is the case with your child (he or she can lift their hand towards their mouth in a sitting position; open his or her fingers wide, lift their arm to the shoulder level), then recovery will probably be full. However, if your child has no or minimal signs of recovery in the first three months of life, you should work with your primary care physician to (1) participate in a therapy program to maintain full range of motion of all joints (2) seek consultation regarding indications for nerve surgery.

(UBPN thanks Dr. Peter Waters for contributing this answer)

You can apply for Social Security or SSI benefits at your local Social Security office. You should have your child's SS# and birth certificate available. You will also need to provide records that show your income and assets, as well as those of your child. You may also call this number 1-800-772-1213. You will notice in the list provided by the SSA, that it states "2 limbs amputated", but familes and/or caregivers should not give up if they feel they have a good case. It is also mentioned in this information you may be more successful by having an attorney respresent you. Heed this advice. It is not uncommon to be routinely denied. Please keep this in mind and proceed to the next step. Don't give up.

The following web link may be helpful:
http://www.ssa.gov/pubs/10026.html#applying

Outreach is a free subscription. All you need to do is send in your mailing address to outreach@ubpn.org. Outreach is published twice a year.

Julia Aten, who chair's UBPN's Wings Program, can help guide you through this process if you qualify. UBPN does NOT have tickets directly from the airlines. However we can assist you in understanding the process of application with the various airlines who offer tickets to needy families and individuals. If a letter from a non profit organization is required as part of this process, we can also assist with providing that.

Brachial plexus injuries often occur during the birthing process. Availability of brachial plexus statistics vary widely, but where figures are available the general consensus is that brachial plexus injuries occur in 2-5 out of 1000 births.

The answer to this question is directly related to the extent of the injury, how many nerves are affected, and to what extent -- a stretch, tear or complete avulsion.

If there is complete recovery, for all intents and purposes there will be no noticeable limitations in the activities of daily living. For those where recovery is incomplete there will be limitations in movement. This kinematic study shows the limitations of certain movements of a small group of OBPI patients versus a "normal" group. Obviously some of these standard limitations have shown to be improved with certain surgical interventions and/or non-invasive intervention such as therapy and splinting. Again it should be noted that these limitations and how they affect the patient are individual, based on both the injury and also the perception of the patient or caretaker. What one person would view as a limitation that should be corrected/treated another may see as no big deal.

You can find a support group by going to the Support Group Registry on this website. Once at the home page for the Registry, just click on 'List Group Registries' and they will then be arranged geographically.

The military has their own insurance system, Tricare, which can be complicated. Julia Aten, who also chairs UBPN's Wings Programs, functions also as our liaison with military families and can assist with many of your questions.

Early intervention is a program that provides services to children from birth to age five. The program is instituted through the Individuals with Disabilities Education Act, Part H for infants and Toddlers and Part B for three to five year olds. Part H is governed by the Department of Public Health, and Part B is through the State Department of Education. Children may be eligible if they are (1) at established risk because they are diagnosed with a condition known to result in a disability or delay (2) at biological risk because of prenatal, perinatal or postnatal histories suggest an increased vulnerability to disability or delay or (3) at environmental risk because the conditions in their surroundings might result in a disability or delay.

Brachial Plexus Palsy would qualify the children under the first eligibility in most cases depending on the severity of the injury, the state that you live in (there may be different criteria to become eligible, such as two areas of need, or two standard deviations from the average etc.), and sadly the experience of the case manager and the tenacity of the caregiver.

The first step is to find if your child is eligible. The Early Intervention program will screen your child using an assessment tool that is age and developmentally appropriate. Assessment instruments include a variety of standardized and criterion references instruments which provide information across the traditional areas of development including cognition, fine and gross motor development, receptive and expressive communication development, social-emotional development and self help. A comprehensive assessment process includes the gathering of information about a wide range of a child's abilities, and parents have the most extensive information in such areas as motivation, interactive abilities, learning style and tolerance for learning. Lastly, if assessment is viewed as an integral part of intervention, then parent participation in assessment introduces the parent as an equal partner in facilitating their child's development.

If your child is found eligible an Individualized Family Service Plan (IFSP) will be developed. The IFSP is required for the provision of early intervention services for eligible infants and toddlers (aged birth to three) and their families and serves as the planning documents, which shape and guide the day to day provision of early childhood intervention services. An Individualized Education plan (IEP) is developed for children 3-5, although with agreement with the school system that administers IEP's, an IFSP can be employed for ages 3-5.

What services may be included in an IFSP? (from 34 Code of Federal Register (CFR) $303.12(d))

• family training, counseling, and home visits

• special instruction

• speech pathology and audiology

• occupational therapy

• physical therapy

• psychological services

• case management services

• medical services only for diagnostic or evaluation purposes

• early intervention, screening, and assessment services

• health services necessary to enable the infant or toddler to benefit from the other early intervention services

• social work services

• vision services

• assistive technology devices and assistive technology services

• transportation and related costs that are necessary to enable an infant or toddler and the infant's or toddler's family to receive early intervention services

The field of early childhood intervention must be prepared to use any technology necessary to enhance a child's development. So even if a particular service isn't currently offered by the provider, if it can be shown that it contributes towards the development of the child in a way that other services cannot, then they must consider the service. Aquatic Therapy is one such service that can be fought for. Some of these services may be offered in-house, at the agency or at a hospital/medical facility, however the delivery of services must be tailored to the needs of the child and family-not at the convenience of the EI providers.

The United Brachial Plexus Network welcomes donations of any size at any time. Individuals and businesses can direct their contributions to the UBPN general fund, or can choose to fund specific needs from our "Wish List" of particular items and services. UBPN is a registered non-profit 501(c)3 organization and your contribution is tax deductible to the full extent of the law. For more information on how to donate to UBPN, go to our Donations page listed in the menu above.

Beginning in 1999, UBPN has promoted an Annual Brachial Plexus Awareness Week during the 3rd week in October. That month was chosen as it is National Disability Month. Our goal is to have a national proclamation declaring this week officially in the year 2005 and we are working towards that goal. The Fall issue of Outreach is considered our Awareness issue and we gear our articles toward this broader perspective. Awareness is part of our mission and it infiltrates all that we do.