Dialing for Autism Dollars · 2009-03-12 13:30

The “Autism Spectrum Disorder Foundation” & Its Telemarketing Campaign

I had just finished putting away my groceries last Wednesday afternoon when the phone rang. I picked up the receiver, and several seconds later an unfamiliar woman’s voice asked for Mr. or Mrs. Seidel. Although I am generally quick to tell telemarketers my policy of not responding to telephone solicitations, this time I replied, “This is she, may I help you?”

Her pitch went something like this:

“I’m calling for the Autism Foundation Wings of Hope Neighborhood Campaign. We’re calling to ask if you would send letters to your friends and neighbors to raise funds for camp scholarships and help for families with autistic children. You don’t have to write the letters yourself, we have a kit that we can send you.”

I said, “What was the name of that organization again?”

“The Autism Spectrum Disorder Foundation.”

I told the woman that I happened to be an autism advocate and was familiar with the names of many different autism organizations, but had never heard of either the Autism Foundation or the Autism Spectrum Disorder Foundation. I asked her where it was located. She left the phone briefly, then returned and stated that it was based in Everett, Washington. I then asked whether the foundation conducted programs in New Hampshire, and what other programs it provided in addition to the one for which she was raising funds. When she was unable to answer, I said, “So you’re not personally familiar with the foundation, but are raising funds on their behalf?” She admitted that this was true, and suggested that I visit the Autism Spectrum Disorder Foundation website at http://www.myasdf.org.

Establishing The Virtual Presence

The Autism Spectrum Disorder Foundation website greets visitors with a statement of charitable purpose and legal status.

“The goal of the Autism Spectrum Disorder Foundation (ASDF) is to support children with an autism spectrum disorder by providing education, information and financial assistance to their families and relevant community service organizations.”

“Funds donated to ASDF will be used to address any and all kinds of issues in assisting children with Autism and their families.”

“Autism Spectrum Disorder Foundation is recognized as tax-exempt under section 501(c)(3) of the internal Revenue Code. Your donation is TAX DEDUCTABLE. [sic]“

Visitors are informed that ASDF furnishes daycare providers, pediatricians and early childhood educators with free “autism emergency response” kits that include “risk assessment tools” and an educational video designed to assist them in early identification and diagnosis. The logo of Goodwill Industries of Southwestern Michigan is displayed beside an announcement of that agency’s partnership with ASDF to “help disseminate key information” about autism.

Other pages on the site provide basic information on autism spectrum conditions, screening tools for autism and Asperger Syndrome, intervention programs, safety issues, and entitlement programs. Most of this text is adapted from publicly available sources such as the National Institute of Mental Health, National Research Council and Autism Society of America.

Descriptions of ASDF’s family assistance and camp scholarship programs state that “ASDF partners with state Autism chapters [sic] in helping to locate and assist families in need.” Testimonials from the directors of the Mt. Hood Kiwanis Camp and the Autism Society of Oregon express their gratitude for donations that enabled local ASO members to participate in a social skills seminar and camp programs.

In a brief podcast, an unnamed mother describes her concern over her son’s development, and her discovery of the ASDF website. In a 30-second public service announcement, pediatrician Dr. Mary Alice Reid briefly describes early signs of autism, and encourages concerned parents to visit http://www.myasdf.org.

Visitors to the “Wings of Hope” page wishing to participate in the letter-sending campaign are instructed to address return envelopes to Autism Spectrum Disorder Foundation, P.O. Box 96730, Washington DC 20090-6730, and to call 866-747-7691 should they require additional fundraising materials.

Visitors to the “Donate Today!” page are promised that contributions will “help us help children with autism,” exhorted to “feel confident in their donation” due to the organization’s tax-exempt status, and encouraged to mail checks, money orders or cashier’s checks to Autism Spectrum Disorder Foundation, 228 W. Lincoln Hwy. #301, Schererville, Indiana 46375

Filling In The Blanks

Although the Washington, D.C. address suggests a national presence, although the references to a neighborhood campaign and regional grantmaking suggest widespread local programming, and although numerous autism researchers, organizations and advocates are invoked and personally thanked throughout the ASDF website, the identities of its own directors, officers, staff, members or volunteers are nowhere to be found.

A call to directory assistance yielded no District of Columbia telephone listing or street address for the Autism Spectrum Disorder Foundation. The District of Columbia Business License Center confirmed that ASDF is not registered to conduct charitable solicitations in that jurisdiction, and that solicitation endorsements are never issued to charities without a street address.

The Schererville, Indiana address provided on the “Donate Today!” page belongs to a rented mailbox at a UPS Store in a strip mall.

A call to the toll-free number listed on the website (866-747-7691) was greeted by a “please hold” recording that did not specify an organizational name; the call was disconnected after a 35-minute wait.

A call to the toll-free number identified as the source of the call to my home (866-670-6296) was greeted by a recorded message:

“Thank you for calling the Autism Foundation Wings of Hope Program. We are very sorry we missed you. We will try to reach you again in the next few days. We are calling you with some recent updates. If you would like more information about our organization please press “1” now. To speak with an Autism Foundation representative, please hang up and dial 1-866-582-7634. Representatives are available 8:00a.m. to 9:00p.m. Eastern Standard Time.”

Pressing “1” led to another message:

“The goal of the Autism Spectrum Disorder Foundation (ASDF) is to support children with an autism spectrum disorder by providing education, information and financial assistance to families and relevant community organizations.”

A call to the toll-free number mentioned on the recorded message (866-582-7634) was greeted by another non-specific “please hold” recording. The call was answered after thirty minutes by a young woman who informed me that my name and contact information had been provided to her employer, InfoCision Management Corporation, by the Autism Spectrum Disorder Foundation.

The GuideStar database contains numerous entries for groups with names that incorporate the terms “Autism” and “Foundation,” such as the Autism Society of America Foundation and the California Autism Foundation, and for state and local Autism Society of America chapters, such as the Autism Society of Colorado. However, although the telephone solicitation, recorded call-back message and “Wings of Hope” website page refer to “The Autism Foundation,” the only groups called simply “The Autism Foundation” are a Florida- and Massachusetts-based charity that was dissolved in 1998, and a small, identically-named fund associated with the Philadelphia-based Center for Autism.

GuideStar does, however, contain an entry for the Autism Spectrum Disorder Foundation, c/o Michael Slutsky, at 10512 19th Avenue, Ste. 101, Everett, Washington 98208. ASDF was granted tax-exempt status in 2007; its address belongs to the office of Charlotte Maris, CPA. A 990 nonprofit tax return has not yet been filed by the organization.

A file for ASDF was opened with the The U.S. Better Business Bureau in October 2008, but it is not identified as an BBB Accredited Charity. A comment from BBB indicates that “the most recent report on this organization has expired,” and that “a new report has not been developed due to lack of inquiries.”

The domains autismspectrumdisorderfoundation.com, autismspectrumdisorderfoundation.org, autismspectrumdisorderfund.com, autismspectrumdisorderfund.org, and myasdf.org are registered to Michael Slutsky at a residence on Muirfield Court in Schererville, Indiana. (The first four domain names were secured on February 15, 2007, and myasdf.org eight months later.) Mr. Slutsky is principal of Angel Lite Fundraising, a business located at the same address that sells private label scented jar candles to school groups, sports booster clubs and churches conducting fundraising campaigns. Angel Lite was established in 2002 and is registered with the Indiana Secretary of State as an active for-profit business entity; however, the company’s website was taken offline sometime after January 2008.

Building The “Nonprofit” Business Enterprise

In March 2007, shortly after its first four domains were registered, the Autism Spectrum Disorder Foundation was incorporated in Delaware (1) with Ms. Doris Rieke named as its initial director. The initial mailing address provided for ASDF is that of the Kansas City law firm of Copilevitz & Canter, which represents nonprofit organizations, professional fundraisers, and commercial businesses in the areas of charitable solicitation, telemarketing, fundraising and regulatory compliance. Among the firm’s more notable victories was a successful First Amendment challenge to the Federal Trade Commission’s 2003 restrictions on telephone solicitations, made on behalf of telemarketers U.S. Security, Global Contact Services and InfoCision Management Corporation, and the Direct Marketing Association.

ASDF’s Bylaws locate its main office at a residential address in Marysville, Washington, and describe its purpose:

“to provide education, financial support and in-kind support in connection with the early detection of, and intervention in, autism and related disorders affecting children, as well as supporting research and treatment of autism and related disorders by any and all means and to engage in other charitable and educational activities consistent with an organization exempt from Federal Income Taxation under Section 501(c)(3) of the Internal Revenue Code.”

Copilevitz & Canter attorneys registered the Autism Spectrum Disorder Foundation as a Washington state nonprofit entity and submitted ASDF’s application for tax-exemption in May 2007. The application names Michael Slutsky as President; Marysville, Washington school psychologist James Michael Roan as Treasurer; and Jan Coyer of Moriches, New York as Secretary. The application discloses the organization’s projected income and expenses from May 2007 through December 2009:

  2007 2008 2009 TOTAL
Income $200,000 $400,000 $750,000 $1,350,000
Expenses        
Fundraising $10,000 $30,000 $50,000 $90,000
Grants $0 $30,000 $30,000 $60,000
Prof. fees $10,000 $30,000 $30,000 $70,000
Programs $180,000 $310,000 $540,000 $1,030,000
Total expenses $200,000 $400,000 $650,000 $1,250,000


A description of planned activities states that roughly half of program expenses will be spent on information services — i.e., website development, preparation and distribution of informational materials and assessment tools — and the other half on making grants to other organizations that conduct autism research and provide direct services to autistic children and their families. Central to the public information program is the Modified Checklist for Autism in Toddlers (M-CHAT), a screening instrument developed by University of Connecticut researchers in 1999; since its creation, the M-CHAT has enjoyed increasingly widespread use by clinicians, researchers and social service agencies working with young children.

A description of fundraising programs describes the anticipated source of capital for ASDF’s plans.

“ASDF will rely primarily on personal solicitation of individuals and the development of foundation and government grant appeals. All members of the board and volunteers will be encouraged to inform their families, friends and contacts about the ASDF and its many services, and need for public support. When future resources are available, ASDF may seek the services of outside consultants to assist it in further developing its fundraising strategies. However, no such service providers have been engaged, to date.”

“ASDF may also rely on passive, on-line giving by those who visit the organization’s website once it is developed. Interest will also be generated through word of mouth and partnerships with participating (and benefitting) organizations.”

“ASDF will primarily conduct fundraising in a limited geographic area in its first years of existence, but will be prepared to accept funds from any potential donor located outside of that intended region.”

Tax-exempt status was granted by the IRS to the Autism Spectrum Disorder Foundation on August 14, 2007.

In mid-2007, a website was created for ASDF by Indiana web designer Nikki Massey, who also developed Mr. Slutsky’s fundraising supplies business website. The new ASDF site went live shortly thereafter, and in early 2008, the Angel Lite Fundraising site was taken offline.

In November 2007, Ms. Massey posted ASDF’s public service announcement to YouTube. Two months later, new YouTube member “watrpilot” — a username identical to the prefix of the email address listed on Mr. Slutsky’s domain registrations — praised the video as “excellent and informative,” without disclosing that he had commissioned its production.

Bankrolling The Charitable Start-Up

Contrary to his assurances to the IRS that fundraising would initially be conducted in a limited geographic area in ASDF’s first years of existence, as soon as tax-exemption was granted, Mr. Slutsky contracted with Precision Performance Marketing, a for-profit fundraising consulting firm that plans and manages multi-state direct mail campaigns and targeted mailing list rentals. Campaigns could be conducted immediately in the twelve states that do not require charities to register before soliciting donations — i.e., Delaware, Hawaii, Idaho, Indiana, Iowa, Montana, Nebraska, Nevada, South Dakota, Texas, Vermont, and Wyoming — and after October 29, 2007 in California, the first regulated state to grant ASDF a charitable solicitation license. In a Fundraising Disclosure Form later filed with the North Carolina Secretary of State, ASDF indicated that it received $14,602 from the PPM campaign by the end of 2007.

According to documents later filed with the Washington Secretary of State, the Oregon telemarketing firm Jadent, Inc. also conducted fundraising campaigns for ASDF during 2007, but no further information is publicly available about their outcome.

In May 2008 — barely eight months after tax-exempt status was awarded — Mr. Slutsky expanded the scope of his fundraising to encompass direct-mail and telemarketing campaigns in all fifty states. He and co-director and Chief Financial Officer Janet Coyer entered into a three-year contract with Precision Performance Marketing. The PPM campaign, and the ultimate fate of contributions made by well-meaning donors, carries considerable uncertainty.

“Targeted Audience. It is the intention of the parties to contact those individuals who have a predisposed interest in the program service of ASDF, but who have not yet affirmatively expressed the same. Because of the nature of this campaign, PPM and ASDF acknowledge and agree that the income generated from the contemplated mailing program cannot be forecast in advance, and may in fact prove to be less than the cost of maintaining this program.”

Also in May 2008, ASDF’s attorneys at Copilevitz & Canter began to submit ASDF’s charitable solicitation registrations in the thirty-nine states besides California that require them: Alaska, Alabama, Arkansas, Arizona, Colorado, Connecticut, Florida, Georgia, Illinois, Kansas, Kentucky, Louisiana, Massachusetts, Maryland, Maine, Michigan, Minnesota, Missouri, Mississippi, New Hampshire, New Jersey, New Mexico, New York, North Carolina, North Dakota, Ohio, Oklahoma, Oregon, Pennsylvania, Rhode Island, South Carolina, Tennessee, Utah, Virginia, Washington, West Virginia, and Wisconsin.

Although he is identified as a Director and Treasurer in ASDF’s application for tax-exemption, the name of school psychologist James Michael Roan does not appear on the board rosters filed with the state registrations. (2) The address provided for Mr. Slutsky in the state filings is a unit in the Camelot Apartments in Schererville, Indiana. A newly-named Foundation director, Helen Ignas, is owner of the apartment complex and owner-occupant of the Muirfield Court residence previously given as Mr. Slutsky’s home address. CFO Janet Coyer, formerly identified as a resident of Moriches, New York, is listed in the state registrations at another Schererville residence.

The audit submitted with the state registrations was prepared by Charlotte Maris, CPA of Everett, Washington, who is designated as custodian of ASDF’s financial records. Ms. Maris discloses that she “is not independent with respect to Autism Spectrum Disorder Foundation, Inc.” but does not elaborate further on the nature of her relationship to the organization. The audit reports the following figures for the period March 14-December 31, 2007 — the first nine months of ASDF’s existence:

Revenue  
Revenue from direct public support $14,602.00
Expenses  
Business expenses $865.00
Contract services $2,250.00
Employee wages $138.90
Operations $3,005.38
Other $12,428.70
Total operating expenses $18,699.69
Net loss ($4,097.69)
   
Assets  
Checking account $234.01
Liabilities  
Michael Slutsky payable $4,245.71
Payroll liabilities $22.35
Wages payable $63.64
Total liabilities $4,331.70
Net loss ($4,097.69)
Total liabilities & stockholder’s equity $234.01


After obtaining approval to solicit donations in a number of states, Mr. Slutsky and Ms. Coyer entered into a contract with the Akron, Ohio-based firm InfoCision Management Corporation, “to recruit volunteers through a residential campaign, who will solicit voluntary contributions from neighbors” on behalf of ASDF. InfoCision’s responsibilities include developing scripts, making telephone solicitations, verifying pledges, and sending mailings. Completed telephone calls are charged at $3.30 apiece; each fulfillment and follow-up letter costs ASDF $1.01, plus the cost of postage and stationery. Communicator training, telephone lookups, computer programming and other services are also separately charged.

The contract offers no estimate of the percentage of gross revenues that ASDF can hope to receive from the campaign. A “break even” clause guarantees that the “client’s liability for costs incurred under this Agreement shall not exceed the gross telemarketing income generated under the agreement” — i.e., although ASDF may ultimately receive nothing from the campaign, the only losers will be the donors who intended their contributions to support autism research and programs for autistic children and their families.

Sprinting To The Financing Goal

The Autism Spectrum Disorder Foundation’s telemarketing campaign began in late summer 2008. Calls were received by participants in online autism discussion groups, who expressed skepticism about the organization’s legitimacy and the ultimate destination of donations. Call recipients complained of hang-ups and calls made late in the evening. Others commented on how unusual it was for an autism organization to raise funds in such a manner. The Autism Society of North Carolina issued an “Autism Telemarketing Alert” to warn its members that ASDF was in no way connected with their organization, and that its representatives were unaware of well-established autism programs in their state:

“The Autism Society of North Carolina wants you to know that despite the [The Autism Spectrum Disorder Foundation’s] claims to provide support to families of children with autism and camper scholarships, it does not appear that this happens. In fact, when contacted about their claims to work with state organizations, a representative of myasdf.org did not know that the Autism Society of North Carolina existed or that we run a summer camp program.”

“The above organization is located in Washington state and uses telemarketing to raise funds. The Autism Society of North Carolina does not have any affiliation with this organization.”

“The Autism Society of North Carolina’s mission is to provide supports and promote opportunities that enhance the lives of individuals within the autism spectrum and their families. To accomplish this we hold fundraising events like the Autism Ribbon Run on October 11. ASNC also may ask for contributions to support programs like the summer camp program or other services via the mail and email. The Autism Society of North Carolina DOES NOT USE TELEMARKETERS to raise funds. The money raised through our mail and email campaigns is used to provide services and supports to North Carolinians on the autism spectrum and their families.”

Although Mr. Slutsky asserts that donors to his Foundation can “feel confident” that their donation will “help us help children with autism,” this caveat from the Oregon Department of Justice offers a much less rosy view:

“InfoCision Management Corporation estimates that the nonprofit organization will receive 22.0394736842105% of all donations collected. Please note that if InfoCision Management Corporation over-estimated donations or under-estimated expenses of the solicitation campaign, the nonprofit organization may receive nothing and InfoCision Management Corporation may retain all donations collected to cover the cost of conducting the campaign.”

Parallel to the ongoing InfoCision effort, on November 14, 2008, ASDF retained another professional fundraising enterprise, Associated Community Services — a firm with a track record of returning as little as 11% of contributions raised to its nonprofit clients. (In August 2008, the firm was fined $100,000 by the Missouri Attorney General’s Office following consumer complaints about its employees’ belligerent, rude, obscene, intimidating and too-frequent fundraising calls.)

The calls continue into 2009, with telemarketers located in call centers and home offices throughout the Midwest making thousands of automatically-dialed contacts with members of the target audience, introducing themselves as representatives of “The Autism Foundation,” soliciting donors to send their checks to a post office box in the nation’s capital, all for the alleged purpose of benefiting autistic children and their families.

A Foundation Of Little-Known Quantities

Although the Autism Spectrum Disorder Foundation’s current principals all live in Schererville, Indiana, neither ASDF nor Mr. Slutsky are known to Lake County, Indiana members of the Autism Society of America or to representatives of the Indiana Resource Center for Autism.

When I called Michael Slutsky to ask him for more information about ASDF, he described its program of public and professional education, camp scholarships, and financial support to families. When I asked about the scholarship program, he was unable to recall the names of any participating camps. When I asked about financial support, he stated that ASDF had underwritten swimming lessons for a child in Massachusetts, making the grant directly to the family rather than through an agency. He acknowledged that he has no personal connection to or professional expertise in the field of autism, yet claimed that ASDF works with “community health departments across the country.” When pressed for specifics, he identified the Multnomah County (Oregon) Health Department as one such agency.

During our conversation, Mr. Slutsky stated that he was the source of most of the contributions to ASDF. However, a Fundraising Disclosure Form filed with the North Carolina Secretary of State indicates that the entire $14,602 in “direct public support” described in the 2007 audit came from ASDF’s initial direct mail campaign, conducted by Precision Performance Marketing. (3) Additionally, the net loss recorded in the 2007 audit is roughly equivalent to the liability payable to Mr. Slutsky, suggesting that his “contributions” are recorded in the Foundation’s books as loans which he expects to be repaid.

The Multnomah County Health Department staff member whose name was given to me by Mr. Slutsky indicated that he had recently called her with an offer to provide a computer to a local family in need; she noted that although the donation had not yet been completed, he had already expressed his hope that she would provide a testimonial thanking ASDF for its gift. When I asked whether she was acquainted with ASDF board member and CFO Janet Coyer, she replied that Ms. Coyer was Mr. Slutsky’s office manager.

When I called James Michael Roan to inquire about ASDF, he described himself as a “technical advisor” and Mr. Slutsky as a childhood friend and businessman with no autistic family members or professional credentials. He explained that he and Mr. Slutsky developed the idea of establishing a nonprofit organization several years ago during a conversation about Mr. Roan’s work evaluating children with suspected developmental and learning disabilities. He indicated that he had helped to develop the informational material on the website about a year and a half ago, but has had little contact with his old friend since that time. When I asked for his opinion about ASDF’s telemarketing solicitations of donations from residents of states where no programs were offered, he stated that he knew nothing about the business part of the Foundation’s operations. Although in his responses to parent questions on AllExperts.com Mr. Roan formerly described himself as “Past President and current board member of the Autism Spectrum Disorder Foundation,” the reference was removed from his biography in January 2009.

I also asked Dr. Mary Alice Reid, the Elkhart, Indiana pediatrician featured in ASDF’s public service announcement, about the nature of her relationship with the organization. Dr. Reid stated that she appeared in the PSA after being invited to do so by the media director of a local high school given a grant by ASDF to produce it; she felt that it had excellent potential to educate families in the early signs of autism, and to educate students in video production techniques. She also stated that she has no other connection to the organization, has no knowledge of its financial data or business dealings, and has never met anyone directly involved with it.

The director of the Autism Society of Oregon, Genevieve Athens, confirmed that Mr. Slutsky contacted her directly some time ago offering to make small grants to local families for respite care, social communication seminars and camp attendance, and that those grants were very much appreciated by their recipients. However, after ASDF’s telemarketing campaign was brought to her attention by ASA chapter directors who had received telephone solicitations at their homes, she informed Mr. Slutsky that she could no longer accept his offers of assistance, and has more recently sought to have her testimonial removed from the ASDF website.

Let The Donor Beware

In the December 2008 report, Pennies for Charity: Telemarketing by Professional Fundraisers, New York State Attorney General Andrew Cuomo aggregated the results of 553 telemarketing campaigns conducted on behalf of 442 charities, which raised a total of $178.7 million during the year 2007. Key findings include:

“In nearly 80 percent, or 436 of the 553 campaigns, the charities kept less than 50 percent of the funds raised.”

“In nearly half, or 271 of the 553 campaigns, the charities received less than 30 percent of the funds raised.”

“In 51 of the 553 campaigns reflected in the report, charities actually lost money.”

“In only 45 of the 553 campaigns did the charity retain at least 65 percent of the money raised, the amount deemed acceptable under the Better Business Bureau’s standards for charitable organizations.”

“In total, 60.54 percent, or $108.2 million, of the funds raised by telemarketers in 2007 was paid to the fundraisers for fees and/or used to cover the costs of conducting the campaigns. By comparison, charities retained 39.46 percent, or $70.5 million, of the total funds raised in the campaigns.”

According to the Cuomo report, the rate of return to nonprofits for fundraising campaigns conducted by InfoCision Management Corporation ranged from 0% to 78.5%. Although well-established organizations such as St. Jude Children’s Research Hospital, American Heart Association and the U.S. Fund for UNICEF netted from 57% to 78% of their donors’ dollars, size and name recognition did not guarantee high performance; for instance, an Easter Seals campaign netted only $28,355 out of $373,876 raised — a paltry 7.58%. The one campaign conducted by Associated Community Services that is included in the Cuomo report returned 17.5% to its nonprofit client — $190,164 out of a total of $1,086,651 in donations collected.

Other public reports indicate that ASDF’s other telemarketing partner, Jadent, Inc., averages a return of only 26% of contributions to its nonprofit clients — a pittance, albeit a significant improvement over the 12% figure reported by the Oregon Department of Justice in 2003.

The Autism Spectrum Disorder Foundation’s fundraising projections, were they to be realized, would place the organization among the wealthier small nonprofits dedicated to autism research, education and service provision. ASDF’s grandly-stated plans to work with public health departments and organizations across the country might seem credible were they formulated and executed by individuals with a personal or professional stake in furthering the welfare of autistic people and their families, and expertise in how this might be brought about. However, this is far from the case with respect to this fledgling enterprise — an enterprise established by a professional fundraising supplies salesman, its board populated with old friends, business associates and housemates, none of whom have any connection to autism save for a school psychologist who helped to develop content for its website, but who has been only nominally involved since.

References to ASDF as “The Autism Foundation” and to “partner[ing] with state Autism chapters in helping to locate and assist families in need,” and instructions to potential “volunteers” to address solicitation letters to a Washington, D.C. address, create the very real potential of misleading donors into believing that they are contributing to the most well-known national, membership-based autism organization — the Autism Society of America, which provides services to and advocacy on behalf of individuals and families affected by autism, which supports autism research and professional education, and which has 190 local and regional chapters throughout the United States.

Autistic citizens, their families, and the organizations that serve them need all of the financial support they can muster. Most operate on a shoestring budget and concentrate their expenditures on programs intended to provide immediate benefit to their constituents. Donors to community- and membership-based autism organizations can generally feel confident that their contributions will be used for their intended purpose, and will not be deployed as InfoCision founder Gary Taylor recently pledged to deploy $10,000,000 of his profits — to purchase naming rights to a football stadium.

Autistic citizens and their families do not need self-appointed philanthropic middlemen who concoct an obfuscatory tangle of toll-free telephone numbers, post office boxes and forwarding orders, and misrepresent their identity and scope of activity in their public appeals, to create an illusion of prestige and far-reaching effect. They do not need carpetbagging fundraisers-for-hire who blanket the nation with intrusive telephone solicitations and siphon resources away from legitimate support and advocacy organizations. They do not need ambitious empire-builders who exploit the golden opportunity in increased autism awareness, gather a fortune from well-intentioned donors, expend most of that fortune on their own salaries and fundraising expenses, dole out the meager leftovers to the real intended beneficiaries of their donors’ generosity, and seek credibility-boosting testimonials from their grantees before the ink on the check has even had a chance to dry.

A Creative Alternative

If the Autism Spectrum Disorder Foundation’s tele-minions come to call, turn the tables and suggest that they themselves donate to reputable organizations that actually provide services to children and adults on the autistic spectrum, and to the families and professionals who love and educate them. Here are a few:

Asperger’s Association of New England (AANE)
ARC of King County
Autism National Committee
Autism Network International
Autism Society of America Foundation
Autism Society of Indiana
Autism Society of New Hampshire
Autism Society of North Carolina
Autism Society of Oregon
Autistic Self-Advocacy Network
Autistics.org
Provincial Autism Center (Halifax, NS)

Resources on nonprofits, professional fundraisers and fundraising campaigns

State Filings for Nonprofits (USA.gov)
Features state-by-state links to information on incorporating nonprofit organizations, and to state forms and information on charitable solicitation activities.

Better Business Bureau: Check Out A Business or Charity
Organization entries provide information on programming, governance, fundraising, tax status and finances, and evaluate compliance with BBB’s “20 Standards for Charity Accountability.”

GuideStar
Information on nonprofit organizations from federal filings. Includes 990 forms for organizations with more than $25,000 in annual contributions.

Charity Navigator
Features “Top Ten” lists such as “10 Charities Overpaying their For-Profit Fundraisers,” “10 Charities Drowning in Administrative Costs” and “10 Charities Stockpiling Your Money.”

Office of the Attorney General of Massachusetts: Non-Profits & Charities Document Search
Includes document filings from 2005 forward in .tiff format.

North Carolina Secretary of State Charitable Solicitation Licensing Section
A gold mine of information on the business of fundraising. Publishes .pdf’s of all documents submitted by charities seeking to solicit donations in the state, including incorporation papers, audits, and contracts with professional fundraising firms. Start here, then go to New York for the tax exemption application, and you will have everything you need to document an organization’s federal and state filing history.

New York State Office of the Attorney General Charities Bureau Registry Search
In addition to requiring organizations to submit their certificate of incorporation, bylaws and IRS determination letter, New York also requires an organization’s application for tax-exemption. All of these documents are made available in .pdf format.

West Virginia Secretary of State
Unique among the states, West Virginia publishes nonprofits’ disclosures of the percentage of contributions from the state and the percentage of program funds disbursed within it.

Washington Secretary of State Division of Charitable Solicitations and Trusts; Registered Charity and Commercial Fundraiser Search
Features a cleanly-designed, easily navigable database interface.

Washington State Commercial Fundraiser Activity Report Listed by Overall Percentage of Funds Retained by Charity Clients
Office of the Secretary of State Charitable Solicitations Program, December 2007.

Iowa charities and fund-raisers
A user-friendly directory maintained by the Des Moines Register, with information current to November 2008. The database contains information for all nonprofit organizations and professional fundraisers registered to raise funds in that state, whether based in Iowa or elsewhere.

Pennies for Charity: Telemarketing by Professional Fundraisers
New York State Office of the Attorney General

Professional solicitors take a cut of your donation to charity: Data on over 4,000 Virginia fundraising campaigns
Provides data from 2000 forward. Search interface features simultaneously useful and cumbersome drop-down lists of all registered charities and solicitors.


Footnotes

1. See document labeled “09/09/2008 Filing Amendment” at NC Secretary of State.
2. See document labeled “06/27/2008 Attachment” at NC Secretary of State.
3. See document labeled “06/27/2008 Attachment” at NC Secretary of State.

Comments


  1. They had the slightest idea what they were getting into when they called you, right?

    That was fascinating, and disturbing. Amazing work.

    — Joseph    2009-03-12 14:39    #

  2. Kathleen, at the risk of repeating myself, I never met someone as thorough as you.

    — _Arthur    2009-03-12 15:16    #

  3. Awe-inspiring. Blogged.

    — Ken    2009-03-12 16:09    #

  4. I learn a lot when I read your posts. Sometimes more than I want to.

    Thanks for the work that you do Kathleen!

    — Patrick    2009-03-12 16:12    #

  5. If there are no criminal charges for this Slutsky character, there sure ought to be.

    — Clay    2009-03-12 18:06    #

  6. Kathleen, make sure you make this maestro sleuthing example part of your portfolio.

    There are many small companies that NEED someone like you.

    — _Arthur    2009-03-12 20:16    #

  7. Amazing. Great work from you Kathleen. I’d never realised how grasping some selling themselves as aiding charities could be.

    — Sharon    2009-03-13 05:58    #

  8. WOW! Kathleen, how come every newspaper in the country is not busting down your door to have you do investigative reporting on this kind of stuff? Oh, yeah, because they hate real news. Great work!

    — Ryan Wilson    2009-03-13 10:12    #

  9. Boy, are they sorry they called you, right? ;-) Thanks very much for this eye-opening post about this organization. Sad to say, I’m sure there are many well-intentioned people out there who would donate thinking they were doing something good.

    — Niksmom    2009-03-13 11:05    #

  10. Sickos :( well done for catching them out. I linked to this and put it on Krumblr and Twitter.

    — Kev    2009-03-13 12:38    #

  11. Kathleen, I will never call you and ask for money.

    — bmartinmd    2009-03-13 14:05    #

  12. “Kathleen, I will never call you and ask for money.”

    Well I would, but I sure won’t lie about it! hehe Great job, Kathleen.

    — trog69    2009-03-14 05:49    #

  13. Wow. Carpetbagger is a good choice of terms.

    Kathleen, thank you your incredible investigative reporting of this purported “charity”.

    — Regan    2009-03-15 04:01    #

  14. Great sleuthing. Your intel on this guy gives me good leverage in telling people not to provide services to this charity. I’ll pass the word.

    — quail    2009-03-17 14:12    #

  15. Stupendous demolition. Sledgehammer, meet nut… but that’s actually the baby pool end. Have a look at the world’s second biggest charitable foundation, the one that owns Ikea: the Stichting INGKA Foundation. Assets of 36 billion, payouts of approximately 1.7 million – say 0.05 percent – according to the Economist, via Wikipedia. Think what autism research could do with 3.6 billion dollars a year…
    Actually, no, it’d probably all go on ABA. Don’t.

    — ChrisB    2009-03-18 20:09    #

  16. Awesome investigation!

    I’ll bet you’re on their do-not-call list now.

    — Elaine    2009-03-20 02:26    #

  17. This is very interesting. James Michael Roan works at the school where I work. He very boldly advertises himself as a psychologist when in fact he is not licensed to do so in the state of Washington. He is not authorized to present himself as a psychologist outside of his employment at my school since he is not a licensed psychologist. I always considered him to be misinformed, a quack, a rogue psychologist, and have not addressed my concerns about his ethics to him personally since it would be very harmful to relationships within the school. Maybe his activities are more expansive than false advertising. I have reported him to the Washington State licensing section for unauthorized practice, because I am a mandated reporter, but I don’t know whether or not they have taken action. It seems not.

    — Gretchen Saari    2009-03-31 23:23    #

  18. Woe to the fraudster who tries to trick the astute Mrs. Seidel!

    Have you thought of taking up private investigation?

    — isles    2009-04-13 17:04    #

  19. Someone posted this link on our AutismKing (ARC of King County) group. YOU are amazing, and helpful, and I can’t wait to delve further into this wonderful blog!

    — Kathy Weatherford    2009-04-25 08:56    #

  20. I am in awe. That was as thorough and dispassionate a dissection as I’ve seen. Please do the same for some televangelists.

    — Mona Albano    2009-05-06 20:16    #

  21. I’m certainly glad my research resulted in my finding your blog! I found myself unwittingly agreeing to their mail campaign during a moment of household chaos. I waffled from guilt for not wanting to fullfil my ‘obligation’ to anger that I had been roped into begging my neighbors for cash!! Thank you for some insightful information which absolved my guilt and fuels my anger!

    — K. Anderson Bflo, NY    2009-05-07 07:53    #

  22. Hey – thanks for the thoroughness of your research. I agreed to a campaign, but I too planned on researching it before bugging my neighbors. Turns out you have already done the investigation for me … and I AM a journalist!
    Thanks for the info – you saved me hours of research.

    — Dixie    2009-05-15 01:29    #

  23. Terrific, thorough-without-being-deadening piece of investigative work! Of course, why not start a “non-profit” that asks for money on behalf of autistic children—who could refuse? As the mother of twins who are on the spectrum (we’re still trying to work out where), I could tear this guy’s throat out.
    Thank you!

    — Helena    2009-06-23 13:31    #

  24. Very good work. Very imformative and thorough. Is there any way to make these people stop calling my home every day?
    Thanks and keep up the good work.

    — Carol    2009-06-26 10:33    #

  25. Thank you for this great article!!! I was called also. I have been taking some classes at the University, some concerning ASD, and my nephew has AS, so I was a prime target for their calls. But I research everything first. Oh boy, am I glad I did. They are not getting a penny from my neighborhood. Again, thank you!!!

    — Beth    2009-07-06 15:14    #

  26. I get some hang-up calls, Google the number, wind up spending an hour reading about this tangled web of obfuscation and and essentially theft from well-intentined donors. I am now outraged. Your work is exemplary in depth of delve and in presentation. Attorneys General in all 50 states should be reading and learning from your work.

    — Alden    2009-07-07 07:48    #

  27. Thank you for this invaluable information. You certainly do a very thorough job!

    — Sue    2009-07-14 18:01    #

  28. This morning, 08/01, I received the same call you did, Kathleen. We both volunteer and contribute to a local program serving preschoolers with disabilities, including many with autism. The name of this organization was unknown to me and so I asked for the web address. After much hemming and hawing, the caller provided it. Fortunately, when I went to check it, I found your post at the same time. All my vague misgivings were confirmed. Thanks for your excellent work. It needs even more attention.

    — Mary Ann Maggitti    2009-08-01 09:28    #

  29. Thank you! I had asked if they were associated with autism speaks and they did not give me a straight answer. I am due to get their packet in a few days and will inform my neighbors of this scam. No money will be sent from here. I was suspicious but didn’t follow up – thanks for letting us know.

    — Virginia Keller    2009-08-15 17:09    #

  30. Kathleen, thank you for taking the time to research this organization. I have a “donation packet” sitting in front of me as we speak. And since I am not a “couch muffin” I decided to do a little research before sending this out to friends and neighbors. Lucky I happened upon your site, and the work was done for me! I worked as an autism tutor before starting my own day care. I have friends that have children with autism. It sickens me that organizations would take advantage of people trying to do something productive. I will skip the solicitations, and make a donation to a more worthy organization. Thanks for saving me the money on stamps!

    — Miranda Ewing    2009-08-21 06:58    #

  31. I was about to send information to my neighboors, but I never heard of this institution so I research on interent. I’m glad I found your blog and immediatly took my name off of their list.

    — Vanessa Scocchera    2009-08-22 10:31    #

  32. Kathleen — I’m so glad I decided to check into the ASDF organization before I solicited donations from my neighbors. I’m so glad I found your web site. Thank you for your investigative work. I will not be donating to this sham organization nor will I ask my neighbors to do so.

    — Rich    2009-08-22 12:08    #

  33. I’m so glad that this has been useful to you all.

    Hmm, I’m reminded that ASDF was due to file a post-fundraising-campaign report with the CT Secretary of State’s office back in June or July. I’ll be interested to see and do the numbers.

    — Kathleen Seidel    2009-08-22 20:55    #

  34. Thanks Kathleen. Our son is Autistic and neighbors asked me about this organization. What a shame.

    — Mike McBride    2009-08-25 12:10    #

  35. My wife received a call August 09 here in Long Island, NY and accepted a kit. We got it with the names of 14 neighbors. She asked me to check it out with Give.org and charitynavigator. Naturally, I couldn’t find anything, but I searched and found you and this great investigation. But, why are they still operating?

    — Steve Walk    2009-08-25 19:47    #

  36. Wow, I agreed to participate in their mailing campaign. I received the kit and began preparing the envelopes, then decided to check this organization out Online. Thank you for this report. I am returning this kit to the sender with a note that their organization does not pass the muster test.

    — Ruth Parrish    2009-08-26 08:25    #

  37. Thank you very much for your dilgence in exposing this questionable “charitable” organization. I have an autistic granddaughter, and these folks seemed fishy. I looked on the internet and found this info. Wonderful job!!!

    — Michel Lee Blauser    2009-09-04 00:07    #

  38. Thank you for this very informative blog. I received a call from “ASDF” and agreed to help with the fundraising by mailing out letters. While addressing the envelopes, I noticed a typo in the packet. That missing letter bothered me enough that I came up to research the organization. After coming up blank (except for their own website), I found your info. I’ll be tossing the “kit” in the trash. Thanks for what you’ve done!

    — Courtney Kalnoske    2009-09-10 11:49    #

  39. Thank you for your wonderful investigative report on this organization.

    — Leo    2009-09-18 06:47    #

  40. I received the call and accepted the packet thinking that I was only going to be asked to mail out information about autism to promote awareness. I was surprised to find that this also involved asking for a donation. My husband did some checking and found this information. I’d already mailed the flyers, and just spent an hour visiting and calling neighbors to tell them to disregard the mailings. Then I called ASDF to let them know I wanted to be removed from their phone and mailing lists immediately. The woman I spoke was dumfounded to hear me state that I wanted nothing to do with this organization!

    — Liz    2009-09-18 09:34    #

  41. Just received the kit. Double checked their website and then found you. Hallelujah! Thanks for letting me know this is a ruse. I got suspicious when I didn’t see a chart with their use of funds like the March of Dimes or Doctors without Borders.

    I am embarrassed that I fell for this.

    Thanks so much.

    — Monica    2009-09-21 09:31    #

  42. ASDF has filed its 2008 audit and tax return, and current fundraising contracts, with the NC Charitable Solicitation Division. My update is here:

    Waist Deep In The Autism Fundraising Hole

    To summarize: At the end of 2008, ASDF was $165,000 in the red thanks to the telemarketing and direct mail campaign. Until that debt's paid off, you can bet that no more than a fraction of a cent from every dollar donated will ever go to the camp scholarships and financial assistance to families that they describe in their fundraising spiel and literature.

    — Kathleen Seidel    2009-10-03 10:47    #

  43. Ditto a lot of the above posters… we have a son who we thought might be on the spectrum and 2 of our closest friends have sons who are autistic. I accepted the kit and now can’t wait to get the phone call asking if I mailed out the envelopes!

    Thankfully intelligent, hard-working ‘reporters” like Mrs. Seidel are not gone the way of the dodo as newspapers flounder financially. This new breed of investigative minds have tools and the means to reach an even greater audience. Kudos to you on your research and thank you on behalf of those of us who were duped.

    — Eric    2009-10-03 10:55    #

  44. Update: they are now involved in the sweepstakes scam industry. My Dad, with early-to-mid dimensia, has been heavily involved in entering sweepstakes. He gets many offers that look similar, including ASDF. ASDF’s is for $6,888.00 and requests a donation. My Dad really thinks the donation will help his chances, even though the offer states—as by law—that a gift is not required. There is a huge industry that got his name and must have sold his name…an industry that ASDF is involved in. Further damning evidence.

    — coo    2009-12-14 12:15    #

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