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Advocacy

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Following a brain injury, a lot of things can go wrong. You might not get all the insurance coverage you’re entitled to, or your rights might be violated such as by a doctor who does not keep your medical information confidential or a landlord who fails to make the stairs and elevators where you live work to safety standards. Or you may simply need someone to help you do laundry or balance your checkbook. Some people even find themselves trapped in extremely difficult situations, legal or financial. During the challenging times, people with brain injury must rely on advocacy.

“I started to call around to town officials and state government offices to ask them how to get out of the ward,” recalls Craig Sears, who found himself misplaced in the mental health system after a brain injury. “The ward was holding me against my will, and I knew I didn’t need to be there. I did know that I needed help in other areas because of my brain injury, but I also knew I was not mentally ill.”

Like Craig, there are many people with brain injury who may need to speak up, or who need someone to speak on their behalf. This act of speaking up and taking action is called advocacy.

What exactly does brain injury advocacy entail?
Brain injury advocacy involves identifying barriers to a better life and addressing those concerns with the right people and organizations. In many cases, a person with a brain injury will advocate for better healthcare treatment, better accommodations for their disability, and for better representation in legal matters.

Armed with basic information and helpful resources, anyone can become an effective advocate for themselves. Some people may choose to hire an advocate, such as a case manager or attorney, while others may ask family members and friends to help out.

Helpful advocacy resources

  • Case managers are individuals who help others find and access health-related services. If you are the current patient of a facility or the recipient of healthcare services in certain states, you may have a case manager assigned to assist you. But in many cases, you or a family member may need to act as your own brain injury case manager.
  • Most states have an organization known as a disability law center. These centers often represent the interests of people with brain injury and may also offer advocacy training opportunities. You can find this organization by contacting your state’s department of health and asking for legal organizations that represent people with disabilities. 
  • Every state has a designated employee known as a “head injury administrator.” As part of their responsibilities, this person should be aware of brain injury services and programs in your state and may know about opportunities to obtain further help and assistance.
  • You can learn lots of great tips by downloading and studying this advocacy toolkit, produced by Disabilities Rights Wisconsin.

Does advocacy really make a difference?
Advocacy can be a difficult and time-consuming activity, but it can also be rewarding. Through advocacy, people have been able to change state and federal laws so that they become more favorable toward people with brain injury and even implement new laws for the support of people with brain injury.

“After nearly 20 years of waiting and being turned down, I turned to a local Congressman’s office for help,” says Craig. “Within two months, they cut through the red tape, and I finally received recognition of my TBI. My advocacy started as a means to overcome my own difficulties,” he says. “Now, it’s become my mission to make sure that no one else has to go through what I have.”
 


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