N.Y.C. Alzheimer’s Chapter Disconnects From National

The New York City chapter of the Alzheimer’s Association yesterday became the first of what could be more defections in response to a reorganization plan that would consolidate 81 affiliates into a single entity.

The local board unanimously voted to disaffiliate on Nov. 18 and communicated the decision to the national office yesterday, said President and CEO Lou-Ellen Barkan. The organization will go by its original name — Alzheimer’s Disease and Related Disorders, New York City, Inc. — until a new one is unveiled in four to six weeks, she said.

Affiliates have until Jan. 15 to notify the Chicago-based national office. How many more disaffiliations there will be before then is unclear but more are expected.

The New York City chapter was among 27 affiliates that voted against the so-called Mission Forward plan during a chapter delegate assembly on Oct. 3. That nonbinding vote was deadlocked at 27-27 and was followed by a 28-1 vote of the national board on Oct. 17 to move forward with the plan. There also are 27 national chapters that are considered part of the national organization.

The local chapter reported total revenue of $7 million in 2014, putting it among some of the largest traditional chapters after Massachusetts-New Hampshire ($10 million) and Northern California-Nevada ($18 million). It has 60 employees.

The chapter delegate assembly vote in October was “definitely controversial,” Barkan said.  “I think that was unexpected, both from us and from the national association. I think we all have to read into that what we can,” she said, adding that if the vote had been successful, it would have been unanimous or a better majority. Each traditional affiliate is probably having the same conversation the New York City chapter had, looking at it from its own lens, staff, its relationship with national, and the feelings for what it can accomplish for clients, she said.

Stewart Putnam, chairman of the board of the national Alzheimer’s Association, said board members knew there was the risk of some level of disaffiliation in advance of the decision to move forward. “Certainly we looked at it as a risk but felt strongly that the decision we made positions the organization and chapters working together to most effectively carry out our mission as the leading organization in the field dealing with the Alzheimer’s crisis,” he said. It’s early in the process, given the October vote, and Putnam expects the “vast majority” of chapters will vote to move forward as a single, unified organization, whether they voted for the motion at the delegate assembly or not. He’s heard directly from about a half-dozen affiliates that will continue with Alzheimer’s Association but no other chapters have indicated a decision to disaffiliate.

“It was clear to everyone here that the best way to serve clients was to retain a very strong focus on care here,” Barkan said. “To continue to do great work we’ve always done would have become more difficult,” she said.

Alzheimer’s Disease and Related Disorders, New York City, Inc., was established in 1978 and joined Alzheimer’s Association as a traditional chapter in 1985. “What we’re really doing now is returning to our roots as a stand-alone charity, serving clients affected by Alzheimer’s. We’re returning to that model,” Barkan said. She doesn’t expect the business model, staff or services to change as a result. If anything we’ll grow our services locally,” she said.

The national organization has become more focused on advocacy, particularly at the federal level, getting more funding from National Institutes of Health, and focused on raising money for research with some degree of care through electronic devices. “In our experience, we strongly feel that working with any family requires a high-touch relationship, typically that takes time, care, social worker or other professional to do this,” Barkan said. The business model would have changed dramatically and the local board would have been replaced with an advisory committee.

The shared fundraising model dedicated 40 cents of every unrestricted dollar to the national office. “Because we were very successful and had a very generous and supportive board, we were net payers to national,” Barkan said. She estimates that meant sending an average $400,000 to $500,000 a year to the national office. “We started talking about this, and that certainly was on the table to think about. Was it appropriate to stay in this relationship and pass money along in this way,” she said.

Asked whether Alzheimer’s Association might be evolving into two disparate organizations – one focused on advocacy and research and another on grassroots care – Barkan said, “ it does feel that way to me.” While the organizations share the same goals of advancing research, to a large extent the missions have changed, she said.

Putnam, on the other hand, sees it as an evolution in the opposite direction, “seeing consistent and robust aspects of the mission in all parts of the country. We fully expect and need to see are changes that allow us to do more. Not only are we providing care and support in local territories but care and support to more people, with programs proven to be effective,” he said.

“As leaders in the cause, we’ll do everything we can do to battle the disease, including services and mission in all parts of the country and we will do that. How we go about that and what it looks like in New York City is still to be determined,” he said.

What makes Alzheimer’s different from other diseases, Barkan said, is that there is no drug or cure or effective therapy. “There lots of stuff in the pipeline but it’s a long way away,” she said, while clinical and anecdotal evidence points to good care as the most effective therapy.

Advocacy efforts might change slightly but Barkan doesn’t expect them to “diminish materially” thanks to unique strategic partnerships with federated type organizations.

Putnam previously has said that Alzheimer’s Association would be prepared to introduce services in a region where there might be disaffiliations. Barkan doesn’t expect the national organization to go into the area and replicate the care work. “They’re getting out of this high-touch work,” she said. There have been a handful of separations from Alzheimer’s Association in recent years, including Eastern Tennessee, South Central Wisconsin, Eastern North Carolina and Long Island, which national disaffiliated.