Resource List and Contacts

Brain Injury Association of America http://www.biausa.org

8201 Greensboro Drive, Suite 611
McLean, VA 22102
800-643-4444

Provides information and resources including information on local family support networks, coordinates resource network.

Disability Rights Education and Defense Fund, Inc. (DREDF) http://www.dredf.org

2212 Sixth Street
Berkeley, CA 94710
510-644-2555CAV/TTY

Provides access to legal issues and other advocacy assistance to persons with disabilities: information/referral

Emergency Medical Services for Children National Resource Center http://www.ems-c.org

111 Michigan Ave. NW
Washington, DC 20010
202-884-4927

Provides information and resource relative to prevention, acute care and rehabilitation of children.

Evaluating Managed Care Plans for Children with Special Health Needs: A Purchaser's Tool at http://www.ichp.ufl.edu/

Family Voices http://www.familyvoices.org

2340 Alamo SE, Suite 102
Albuquerque, New Mexico 87107
888-835-5669

Family network providing information, support and resources regarding health and advocacy for children with special health care needs.

Institute for Child Health Policy http://www.ichp.edu

5700 SW 34th St., Suite 323
Gainesville, Florida 32608-5367
888-433-1851

Provides state by state information about health/services related to children with special health care needs; information related to health finance and social security issues are also available.

National Association of Protection and Advocacy Systems (NAPAS) http://www.napas.org

900 2nd Street, NE, S-211
Washington, DC 20002
202-408-9514

Provides information and referrals to state protection and advocacy programs for individuals with disabilities.

National Early Childhood Technical Assistance Center http://www.nectas.unc.edu

500 NationsBank Plaza
137 East Franklin Street
Chapel Hill, NC 27514-3628
919-962-2001

Provides information and resources for each state on any intervention and pre-school programs for children with special health care needs.

National Information Center on Children and Youth with Disabilities http://www.nichcy.org

PO Box 1492
Washington, DC 20013-1492
800-695-0285

Clearinghouse on information and resources related to children with disabilities and state agency contact information.

Parent Advocacy Coalition for Educational Rights (PACER Center) http://www.pacer.org

8161 Normandale Blvd.
Minneapolis, MN 55437
952-838-2966

Information regarding state-by-state parent information training centers; provides resources on education and transition services identified in IDEIA.

Traumatic Brain Injury Program http://www.mchb.hrsa.gov/programs/tbi.htm

Health Resources and Services Administration
Maternal and Child Health Bureau
Parklawn Building, Room 18-05
5600 Fishers Lane, Rockville, MD 20857

Provides information on federally funded state brain injury grants. Provides links to collaborators websites.

Conclusion

Only families who have gone through the experience of their child receiving a brain injury can truly understand what this means. Your family has had this experience and by necessity learned about brain injury and its consequences for your child. Others will not fully understand because they lack knowledge and understanding of brain injury. The needs of the child with a brain injury are complex and change over time, and each child's injury and recovery are different.

As you seek services for your child, you will meet others who do not fully understand brain injury. Educating others about your child's brain injury is an important role for you to play. Your child's needs are unique, and no one knows them better than you do. No one else will be able to speak about your child's needs as well you can. The education of others will be a continuing process as your child matures and his needs change.

Education is part of the advocating process through which you can build awareness among professionals. By advocating for your child, you can also help match services and programs with your child's strengths and needs, develop partnerships with professionals, and even work toward changing the system. Advocating for your child to obtain medical, educational, and vocational services is a valuable skill for you to learn. You can become an effective spokesperson for your child.

Your family's life today may be different from the one you had before your child's brain injury. Looking back, you may be surprised to see that you have grown through this experience. As you look toward the future, know that you are not alone. Professionals and parents at the organizations and agencies listed in this guide can help you. Reach out to them to build a network of support for your family and child. With the support and help of others, your family and child will be able to set out in a new, rewarding direction.