What can you do to become a Grassroots Advocate? Turns out there is plenty that you can do. Just showing up to governments meetings and letting them know your care about what happens. Let the public know that what the committees are saying is not what people are actually seeing.
As evidenced by a WNYT news story, the media will take notice. When you see a news story online, make sure to comment so the news organization knows that these types of stories are important to the community they serve.
Please feel free to contact us with links to TBI related news stories so we can post them for everyone to see.
Training
A big part of advocacy is knowing your rights. Understanding the admissions and discharge rights are critical to overall TBI care. Admission & Discharge Rights in NY State Nursing Homes is an excellent primer for your rights in New York State.
We are working to the TBI community by empowering Professional Advocates. We are continuing to create programs for Advocacy Specialists, to help people understand their rights, and Investigative Specialists, to identify when someone with TBI had their rights violated.
KAC In Action
In a November 15, 2015, letter to NY State Dept. of Health Commissioner Howard Zucker, the New York State Traumatic Brain Injury Services Coordinating Council recommended that the Dept. of Health not put the Traumatic Brain Injury and Nursing Home Transition and Diversion wavers into managed care. The TBISCC was created by Chapter 196 of the Laws of the State of New York, 1994 and charged with “recommending to the department long range objectives, goals, and priorities. It shall also provide advice on the planning, coordination, and development of needed services”
In a letter to the commissioner dated Dec. 3, 2015, the Kahrmann Advocacy Coalition came out in strong support of the TBISCC and carving out the waivers from being placed in managed care.
In December 22, 2015, Mark L. Kissinger, Director, Division of Long Term Care for the NY State Dept. of Health responded on behalf of the commissioner. This is a copy of that letter.
KAC Accomplishments
* KAC members have acted as advocacy mentors for New Yorkers with brain injuries and their families, when one or both believe their rights are being denied, either by a TBI Waiver Provider, the state’s DOH, or both. KAC has worked closely and continues to work closely with Disability Rights New York, the Albany-based Protection and Advocacy Agency for the state. Every state is required to have a P-and-A for people with disabilities.
* In 2008 KAC discovered and revealed that a contract-employee with New York State Department of Health (who’d been given nearly total control over the state’s Traumatic Brain Injury (TBI) Waiver (a Medicaid program meant to return TBI survivors and keep TBI survivors living in the community)) had been grossly misrepresenting his educational credentials. The PhD and Master’s Degree this individual claimed to have were in fact awarded to him through a diploma mill located off the coast of Australia. (Documentation available on request). It took several years of relentless pressure, solely from KAC, before the state’s DOH cut ties with this person.
* KAC uncovered the fact that since the NY State TBI Waiver began in 1995, waiver participants and others who filed waiver-related complaints were never informed by the state’s DOH of their outcomes. It took months of relentless pressure, again from KAC only, before the DOH agreed to change its policy and inform complainants of the outcome of their complaints.
* KAC was the first voice in the New York brain injury arena to draw attention to the fact the state does not require TBI Waiver providers to have any measurable knowledge of the brain. Moreover, as a result of information gleaned from FOIL requests, KAC established that none of the DOH staff (including contract staff) overseeing and running the waiver are required to have any knowledge at all of the brain and brain injury.