The agencies described below are the foundation of the network you are building. Keep in mind, you will locate other resources and helpful people along the way. Each community has its own service network, both professional and volunteer, formal and informal. Some of the agencies listed below offer advocacy training for parents so that they can develop the special skills they will need. There are also some great books on how to become a better advocate for your child.
Most states have a chapter of the Brain Injury Association. This organization focuses on improving the quality of life for people with brain injuries and their families by developing support services, injury prevention, education, and advocacy programs. The membership includes survivors, families, health care providers, and other professionals associated with brain injury.
The Brain Injury Association of America at http://www.biausa.org provides outreach, support, and information for individuals with traumatic brain injury and their families. The staff can help you identify local resources, as well as connect you with your state Brain Injury Association. You can contact the National Brain Injury Association at 800-643-4444.
The Brain Injury Association of New Hampshire at http://www.bianh.org offers outreach and advocacy services, training for schools, assistance with developing service plans, and provision of services. You can contact the Brain Injury Association of New Hampshire at 800-773-8400.
The Individuals with Disabilities Education Improvement Act (IDEIA) is a federal law regarding early intervention services, education, and related services for infants, toddlers, and children with disabilities and other conditions that affect learning. IDEIA defines related services to include assistive technology, rehabilitation, transition counseling, and social work. The IDEIA law has a special category for traumatic brain injury. New Hampshire's law for education matches the federal guidelines under IDEIA.
While your child is still in school, it is important to start planning for your child's future after graduation. Your child may decide to go to college or may want to enter the work force. New Hampshire has a federally mandated vocational rehabilitation program which provides guidance, counseling, and placement services to all eligible individuals. A vocational rehabilitation counselor can help develop an individual vocational plan for your child. This plan may include physical restoration, counseling, skill training, transportation, maintenance, tools, and equipment.
If your child is less than 3 years of age, contact the National Early Childhood Technical Assistance System at 919-962-2001 or visit the National Early Childhood Technical Assistance Center website at http://www.nectas.unc.edu. Also, ask your local school district for the Early Intervention Services Coordinator. You can also contact your local Area Agency for Developmental Services at http://www.bianh.org/resource/agencies.htm.
If your child is between the ages of 3 and 5 years, contact your local school for application and information regarding the Early Education Program for Children with Disabilities.
If your child is between the ages of 6 and 18 years, contact the principal, special education director, or teacher at your child's school and request an evaluation of your child for special education.
When your child turns 14 years old, contact your state's Division of Vocational Rehabilitation and ask for information about transition planning to adult services.
Every state has support organizations for families. They are staffed by parents who have shared a similar experience. Some of these organizations center on a specific disability or condition, like cerebral palsy or Down's syndrome, while others focus on broader parenting issues. Rather than limiting yourself to parents whose children share your child's diagnosis, network with parents of children with other diagnoses as well. Children with different medical or behavioral issues may have similar educational and/or social challenges. Financial concerns are common ground for all families.
The following organizations can provide information, support, and training for families of children with disabilities on national and state issues related to education and health.
Parent Advocacy Coalition for Educational Rights (PACER) at http://www.pacer.org.
Parent Training and Information Centers
Family Voices at http://www.familyvoices.org.
New Hampshire Family Voices
New Hampshire Parent Information Center
Parent to Parent
Project Brain at http://www.tndisability.org/brain/.
Brain Injury Association of America, Inc. at http://www.biausa.org.
Brain Injury Association of New Hampshire at http://www.bianh.org.
For additional information about these and other family support services, visit the Brain Injury Association of New Hampshire website at http://www.bianh.org/resource/familysupport.htm.