Alzheimer’s Texas Cuts Ties with National Group Over Funding Dispute

Austin-based Alzheimer’s Association Capital of Texas Chapter (known as Alzheimer’s Texas) announced that the organization has separated from the national organization, based in Chicago.

The organization, a leader in Alzheimer’s care, education, and support in Central Texas, and the state’s pre-eminent force for new funding for Alzheimer’s disease and dementia research, says that the decision was made so that Alzheimer’s Texas will be able to keep funds raised in Central Texas within the region.

A nonprofit in continuous operation since 1982, Alzheimer’s Texas notes that it is one of six chapters to date that has formally disaffiliated since October 2015, when the national Alzheimer’s Association announced that funds would go directly to the national organization, rather than being dispersed within each chapter’s region.

The locally managed and controlled chapter had operated under a name use agreement with the Chicago office for many years while maintaining its own books and records, its own independent IRS-exempt ruling, and an annual independent audit.

The other five Alzheimer’s Association chapters that have broken with the national organization are Greater New Jersey, Orange County (CA), San Diego/Imperial Counties (CA), New York City, and Greater Los Angeles (CA). The six, cumulatively, serve more than 38 million people and have a combined annual budget of almost $24 million.

Alzheimer’s Texas emphasizes that the organization will continue providing high quality, informed, and compassionate care in Central Texas for the thousands of families and individuals affected by Alzheimer’s disease and related dementias.

“We have a new name but we offer the same service, support and commitment,” says Christian Wells, president of Alzheimer’s Texas, in a release. “By disaffiliating, we retain critical flexibility to respond quickly to community needs and we retain the authority to innovate and control our ongoing programs and service. This action also allows us to commit to our community and donors that all funds raised in Central Texas will be retained for use in our geographic region and not shared with the National Chicago office. Retaining the Texas-raised funds will allow us to better serve clients and expand our programs in Central Texas. Under the business policy mandate from the National office, 40 percent of all funds raised in Central Texas and 100 percent of all funds restricted for research were remitted to the Chicago office.”

The organization says the move to separate began at a chapter delegate assembly in October, when the Austin-based chapter joined the majority of independently run chapters in voting against the national Alzheimer’s Association’s proposed merger and mandatory transfer of assets to the Chicago office. In spite of many regional chapters’ opposition, the national organization voted to go ahead with the plan.

“The national organization has become increasingly less focused on grassroots care. I have personally reached out to National leadership numerous times in order to give voice to a positive and supportive message of a dignified life for those with the disease and their caregivers,” says Dr Ron DeVere, a neurologist who serves as Board chair. “Had Alzheimer’s Texas not separated from the national organization, the business model would have changed dramatically, making it difficult to continue doing the great work we have always done, and our local board would have been replaced by an advisory committee. This was crucial to our decision because, in the absence of a cure or effective therapy for Alzheimer’s and other forms of dementia, the best and only medicine is good care. That requires working with families in a close, interactive, and personal relationship that takes time and compassion.”

Wells assures Alzheimer’s patients and supporters in Central Texas that they will continue to receive the same quality service and programs they have come to expect for 30 years. She notes that more than 18,000 Central Texans were reached through the organization’s various service channels in 2015, a 16 percent increase over 2014.

Alzheimer’s Texas Walks will also continue, helping to raise awareness and community support for the approximately 340,000 Texans living with Alzheimer’s, and the nearly 1.3 million family members and friends who care for them. Five events are planned for 2016. For more information on dates or to pre-register, visit: alztexas.com/walk.

Services provided by Alzheimer’s Texas include:
• A 24-hour Helpline for support, information, referrals, and consultation
• Extensive educational classes and conferences for caregivers, persons with dementia, members of the general public, and professionals
• Rural outreach though the Lunch-N-Learn program, speakers’ requests, and local partnerships
• Caregiver Support Groups that meet monthly, providing support to over 3,100 clients annually
• Early Stage support through the Alzheimer’s Texas Tele-Support Group, Early Stage Engagement Program, and Community Respite Development
• Partnerships across the spectrum of the care community, including local and state agencies, leading researchers, and local organizations
• Advocacy initiatives to support funding for Texas Alzheimer’s Research and Care Consortium (TARCC), a collaboration among six of the state’s leading medical research institutions to improve early diagnosis, treatment, and prevention of Alzheimer’s, as will advancing the Texas State Plan on Alzheimer’s Disease

Alzheimer’s Texas says it has spearheaded efforts resulting in almost $38 million in state funding for Alzheimer’s research in Texas from a number of research institutions: Baylor College of Medicine, Texas A&M University Health Sciences Center, Texas Tech University Health Sciences Center, The University of Texas Southwestern Medical Center, The University of Texas Health Sciences Center, the University of North Texas Health Sciences Center, and, most recently, the University of Texas at Austin.

“With the direction the national organization is taking, we simply are not confident it can do justice to or replicate the high standard of care we are providing the Central Texas Alzheimer’s population and no compelling business model was presented to justify a change of this magnitude,” says J.E. Buster Brown, a former Texas senator and member of the Board of Directors of Alzheimer’s Texas, in the release.

Alzheimer’s Texas has also long enjoyed support from community partners committed to improving Alzheimer’s disease care and finding a cure or effective treatment.

“It is gratifying to work with a professional staff so devoted to the people it serves,” says the Board’s treasurer, Ava Late. “The people of Alzheimer’s Texas truly care about our patients and families. They are steadfastly devoted to helping people navigate through the difficult decisions and uncertainties people with Alzheimer’s and their families face at every stage of the disease.”

For more information, visit: www.txalz.org

Sources:
Alzheimer’s Texas