Advocacy by and for People with ABI (Acquired Brain Injury)
How You Can Help
Thank you for your interest. We truly need people to come forward and help. Here are a few possibilities. Please take your pick.
1. If you are a survivor, join a Brain Injury Network advocacy group. Befriend tbi_survivor or Sabisue on Facebook (BIN affiliation shows on the profile), and explain your interest. We have an advocacy forum entitled SABI on Yahoo groups and one on Facebook groups as well. SABI means Survivor, Acquired Brain Injury.
2. Ask your family who do not have brain injuries, but who are interested in discussing brain injury, to join the ABIRA - Acquired Brain Injury Requiring Assistance group on Facebook. To join this group a family caregiver should befriend Sabisue (BIN affiliation shows on Facebook profile) and explain his or her interest in joining ABIRA. We also have assorted pages on Facebook they might like to investigate. For example, there is the offical Brain Injury Network facebook page.
3. Spend time studying this site. Familiarize yourself with our advocacy platform. Sign our address book so that we have your email address and can correspond with you. We can send you the Cautionary Tale and A Call for National Standards email. If you agree with our philosophy, you can distribute it to all the people you know.
4. Join a survivor support group in your area and talk up these issues. If there is no survivor support group in your area, check with your local hospital, rehabilitation facility, college, school, BIA affiliate, or other disability organization about starting one up.
5. Contact your state legislative representatives (state assembly members and state senators). Share the proposed mandated reporter law with them. Ask them to sponsor and vote for a mandated reporter law in your state.
6. Find out who in your state oversees college level disability student services, departments and programs. (It could be a Chancellor's office, a commission, or several kinds of oversight.) Research these people and if you can find their email addresses, send them the Cautionary Tale and the Call for National Standards. In the alternative, correspond with them via snail mail (regular mail sent via the post office). Ask them to create abi/tbi program standards at their level, which will be required in all colleges in your state.
7. Write to your federal (representatives and senators) congressional people, especially if they are on the Congressional Brain Injury Task Force. Ask them to work on the creation of national standards for abi/tbi post-secondary programs. It could perhaps be done by the USA Department of Education in partnership with many other entities such as the various college systems, various associations that serve the disability community, the National Institute on Neurological Disorders and Stroke, the TBI model projects, the Protection and Advocacy organizations, AHEAD, CARF, and many, many others. We at BIN (the Brain Injury Network) would be delighted to throw in our two cents since these programs are all about services for us.
8. Get involved with any associations or other nonprofits in your state that work to help people with acquired brain injuries (from tbi, stroke, brain tumor, brain illness, and other abi's). Call them to see if they have survivor participation on their board of directors. Interact specifically with any survivor board of director members.
9. If you sustained a traumatic brain injury (tbi), see if your state BIA affiliate has a survivor council. If they have one, get on it. If they do not have a survivor council, ask that they start one. And then get yourself onto that survivor council.
10. Ask your association affiliates to reflect the public policy objectives of the brain injury survivor community. For example, share the Brain Injury Network (BIN) national standards for college level programs for people with abi (acquired brain injury) and tbi (traumatic brain injury) with your Brain Injury Association affiliate. Ask them to work on the creation and dissemination of such standards nationally and in your state, on behalf of survivors like you. Ask the BIA to seek out and lobby postsecondary institutions and systems to initiate such national standards.
11. Ask the BIA to work on passage of a college employee mandated reporter law in your state. Such a law would require college employees to report criminal conduct against college students with brain injuries to the authorities. The law would apply when a student with a brain injury is enrolled in a college's disability or brain injury program. You can refer your BIA affiliate and others to www.braininjurynetwork.org if they want to study the proposed legislation. (The legislation is just a prototype. Each state, with input from people like you, could develop something similar for that state.)
12. Ask your state acquired brain injury affiliates to work on other public policies, as defined by the Brain Injury Network, a survivor advocacy organization. We know what our brain injury survivor community requires in the way of services, protections, and legal interventions. They should know, too, and they should be helping by pursuing wide-reaching policies that put all of our survivors' priorities first.
15. Join Escrip or OneCause for the Brain Injury Network (formerly the Brain Injury Network of Sonoma County, Inc.) (Information on those is on this braininjurynetwork.org website on the please donate page.)
These are all free programs that support our work.
16. Search the Internet or buy on the Internet using the GoodSearch Search Engine. Select Brain Injury Network (Santa Rosa, California) as your GoodSearch charity.
If you choose to do any of the above, we strongly feel that you are going to be doing something that will help our collective community.
Sue Hultberg (tbi and abi survivor, 1985) President of the Brain Injury Network