Aug 28, 2011

The Local Versus National Alzheimer's Presence

The good news is that since independence from the top-down and wasteful policies of the National, we have been better able to accompany people in Wisconsin in their own journeys at what ever stage. Independence has resulted in deeper connectedness locally.

By Mary Kay Baum

At age 57 I left the work I loved due to cognitive decline probably of the Alzheimer’s type. I was falling, had seizure activity, had disturbed sleep, lost my train of thought and had a hard time finding my words.

I benefited from programs of the then named South Central WI chapter of the Alzheimer’s Association. In a unique and important move to include consumers, in 2006 I was invited to their Board of Directors and eventually became Board Secretary .

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But by April of 2010 I was writing a whistleblower letter to the National Board Members because of the way the National was treating me and my colleagues. This is the heart of what I wrote, to which I never received an inquiry or substantive reply:

SHARED FUNDRAISING - Our local Board openly opposed the new 60/40 split Shared Fundraising Policy. It was vague as to which fundraising expenses could be deducted, how grant funded projects would be handled when the grant ended, and how the National would live up to its fundraising goals. Many chapters were silent because they knew they had no real say anyway as it was the National Board alone who would set this policy.

SHARED FUNDRAISING IMPLEMENTATION - The National treated us harshly in implementation largely, I believe, because of our opposition. Wherever there was a question of interpretation National officials, who never met with us, decided against us. For example, we were ordered send more money to National because we had raised funds to continue innovative rural services that a grant had previously provided. And what irony! The only discretionary area in our budget that we could cut was this very same rural project. National’s step-lock implementation would not be sharing fundraising, it would be robbing rural patients of important services.

MEDIATION - I was especially stunned by National‘s outright refusal to submit this interpretation dispute to mediation. This was a clear breach of the Statement of Relationship, which is the one “binding legal agreement” between the National and a Chapter.

CENTRALIZATION - Unlike some national health organizations, our local organizations developed first and are independently incorporated. As a Board of Directors we have a fiduciary duty to assure that funds we raise are spent for our mission. The current push by National towards a single top-down organization is counter-productive and at odds with the legally binding Statement of Relationship. Centralization gives the appearance of hard-earned local dollars going to support excessive compensation packages (over $1 million a year for one CEO), premium office space, and luxurious meetings at hotels most of us cannot afford.

LAW VIOLATIONS - When National confirmed our decision to disaffiliate (Nov. 2009) National immediately diverted our website and email system to their office without notifying us. After months of promises they still were keeping our emails and not notifying the sender that they withheld them from us. Only with months of our lawyers intervening did they stop these practices that violate communications law.

Since I wrote my whistleblower letter over a year ago, I have much to add about the National’s DECEPTIVE COMPETITION IN OUR AREA. Like in other areas where a chapter has disaffiliated, National opened an office in Madison to fundraise for itself. It is not a chapter as it has no Board of Directors to enter into a relationship with the National. But this tiny office with no program staff tells people that it is the old South Central WI Alzheimer’s Association and raises money through mailings and a Madison-based memory walk. It appears to deliberately try to confuse donors into thinking they are us. Until caught, their office even tried to divert our US mail to their little fundraising office.

BAD MARKETING I have twice written the National asking then to stop using marketing that hurts people with cognitive changes. I had written in January of 2009. Then in January 2011, National CEO said again, "Alzheimer's is a tragic epidemic that has no survivors. Not a single one," I wrote again as follows, “these words of ‘no survivors’ are demoralizing to all of us with the disease - the very persons you are working for. I objected to these same words two years ago when you had a public official say them to promote your public policy forum. You took them off the site but said they really increased sign-ups. The ends do not justify the means. There is no excuse for such hopeless words that further stigmatize the disease. I have found people give more money when hope is more obvious.”

LITTLE CONSUMER EMPOWERMENT In every communication with the National I try to encourage them to follow standard nonprofit best practices. Those would include a good representation of consumers on their Board of Directors. Consumers could be persons with cognitive changes and persons who are in a care partner role. The National ‘s board has only token representation from time to time and no long standing consumer members on their 50 plus member Board of Directors.

The good news is that since independence from the top-down and wasteful policies of the National, we have been better able to accompany people in Wisconsin in their own journeys at what ever stage. Independence has resulted in deeper connectedness locally. You can see that in our website,


Mary Kay Baum

Mary Kay Baum is living well with cognitive changes. Her current calling is to promote prevention and early intervention of Alzheimer’s and related conditions. Mary Kay was a school board member, county board supervisor, attorney, court administrator, and director of Madison Urban Ministry. You can learn more about Mary at The Hope of Alzheimer’s: An Advocate’s Journey.

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Original content Bob DeMarco, the Alzheimer's Reading Room