Today was better than yesterday.  That is a small victory in the books.  At the moment I am happy for these small victories and am taking one day at a time.

Since April of 2011 I have watched as a small “organization” in Illinois elevated my families hopes of obtaining a autism service dog to stratospheric heights and then within just a few months sent it all crashing down.

Since officially withdrawing from their training program – I believe that we were the first family to join them in 2011 – I have sought answers to question and even to this day I have received very little.  There are several people who have stepped forward in an effort to help us get those answers and I would like to say thank you to them and those for which they work.  Without further ado…thank you for shedding some light on this story:

Mike Brooks, WICS ABC NewsChannel 20 Springfield for your segment
Chris Henry, Kitsap Sun for your story and Meegan Reid for the great photo.
Jesse Jones, KING 5 Seattle, for your hard work and the segment airing soon.
Better Business Bureau of Central Illinois
Office of the Attorney General of Illinois
Springfield Autism Resource Center
The Autism Program of Illinois

I hope that it will not end here but continue to burn bright and bring out the truth of it all.  For this to happen I believe that there will need to be a constant reminder for the families involved to have closure.  I wish I could say that I thought it stopped with the families mentioned in the various articles – I have a sinking fear that it extends beyond that even beyond the confines of our country into possibly Canada, New Zealand, and Australia.  Each person who has posted a comment on the Siberian Snow Babies’ Animals for Autism Facebook page inquiring about a possible service dog was given instructions to email for further information.  Below is our email inquiry to Lea Kaydus, founder of Siberian Snow Babies’ Animals for Autism.

Hello,

 My wife and I are searching for a service dog for our soon-to-be 8 year-old daughter, Faith.  A very quick background on her and why we are seeking a service dog.  Faith had a right-hemisphere stroke prior to birth.  She is diagnosed with Autism, mild cerebral palsy, Familial Mediterranean Fever Syndrome, Rapid Cycling Mood Disorder and several life-threatening food allergies.  The stroke also caused a disruption in her growth – the left side of her body is smaller than the right side.  Although not as extreme as some it has been systemwide to include bones and internal organs.  As a result she has had developmental delays and her fine motor skills and coordination are very poor which is only compounded by increased swelling in her extremities.  

 We are hoping to find her a dog which can help her become more independent and less fearful.  To help her mobility: provide assistance when she is having difficulty walking, retrieve items that she has dropped, possibly open doors, assist with getting dressed.  Emotionally: to interrupt self-harming behavior, stay with her during the night and alert us if she wanders, help her calm during “meltdowns” and ease both transitions and public places by providing support.  If it were possible for her dog to alert us in the event of an allergic reaction.

With all this being said; a service dog is desired over a therapy dog.  Our goal is to help make her more independent and less reliant on our constant presence.

 Would your program be able to assist with these items?  What is your wait list?  Do you have specific requirements?  What are the anticipated costs?  

 Thank you so much for your time and help.

This was answered the next morning with the following email which included an application to their program:

Thank you for your inquiry about our service animal program.  The basic requirements for our program are a diagnosis of an autism spectrum disorder, be age 5+, and have a prescription from a physician stating the need for a service animal, none of which should be a problem for you.  I would be most honored to develop a training program for one of our animals to meet your daughter’s needs.  Some of the challenges you have presented are more time consuming than our usual requests from a training perspective, however, they are all attainable.  I will address each of your requests individually.

1 – Balance assistance with gait is a fairly common training challenge, yet unique to each individual.  Part of our application package is a request from you of a short video to help familiarize our team with your daughter’s needs.  A clip showing her walking and mobility challenges should be a part of that submission.

2 – Picking up dropped items – easily accomplished.

3 – Opening doors – easily accomplished.

4 – Assistance with dressing is a bit more challenging and depends on the specificity of the actual tasks.  Retrieving and passing on articles of clothing is quite doable, but I would like a clearer description of what it is you would expect of the animal.

5 – Interruption of self-injurious behaviors – easily accomplished through a combination of the service animal and ABA techniques, but I would like additional details about the specific behaviors we will be training to interrupt.

6 – Spending the night and wandering alert – easily accomplished.

7 – Calming meltdowns – easily accomplished through a combination of the service animal and ABA techniques.

8 – Allergic reaction alert – This concerns me the most.  There are two ways of training for this, and I will need to know what your daughter is allergic to.  At this point, I am assuming she has an anaphylactic reaction to whatever the allergen(s) may be.  The easiest (and safest) method of training for allergy alerts is to train the animal to alert in the presence or near proximity of the allergen.  Additional details will be necessary.

Training for an average autism service animal takes 12-18 months with 1000 to 1500 hours of active, hands-on time.  Most of these programs are actually completed close to the 12 month/1000 hour set-point.  With some of the advanced skills needed for your daughter, I feel the minimum hands-on time will be 1500 hours.  That is normally spread over an 18 month period, but if time is of the essence to you, the animal could be trained for longer daily periods, and still finish close to the 12 month mark. 

All of the animals in our program are generously donated by quality breeders who are our close, personal friends we have known since our “show dog days” many years ago.  All are from champion or grand champion AKC or UKC bloodlines and are of optimal health.  The average life span of the animal is 12-15 years, with most dogs ready to retire between 8 and 10 years of age.  At retirement, you can either retire him/her with you but no longer in service, or the animal can be returned to us to live out his or her retirement years.  There has been recent press regarding a gentleman whose animal was repossessed for what the agency considered just cause.  I will not comment personally, other than to say that when we transfer an animal to a family for service, we relinquish all rights to that animal and simply ask you to return it to us if it is no longer of service or you can no longer care for it. 

In addition to having donated puppies, we have also been blessed to have donated space in which to work with the animals, gracious volunteer puppy raisers, and some donations of food and other supplies.  We also have incredible trainers who work contractually for us at a rate of just $5 per hour.  They consider their discounted rates to be their gift to our families.  We even have a couple of junior trainers who are on the autism spectrum and working toward careers of their own in animal husbandry and training.  All of this takes place under the supervision of myself, and I am a Certified Master Trainer.  The actual cost to raise and train a service animal is in the $20,000+ range, but we are able to place our highly-trained service animals in the $5000 to $7500 range, and the pricing reflects the number of training hours required. 

I cannot make a final determination of cost without a completed application package, however.  There are many pointed questions in the application package, and each is extremely important for the development of the training program.  It is not a test, but the clearer and more detailed your responses are, the better we can map a course of action.  Once I have that in hand and can meet with our team, we can determine the necessary training time, and let you know the outcome.  Our general policy is that our families travel to central Illinois for the final phase of training, which is a week of intensive integration and proper handling techniques to use with your service animal.  If you case, I am thinking may be more appropriate for a trainer to come to you for that week.  Should that be decided, there will be travel fees associated in addition to the training program. 

At the present time, we do not have a waiting list, and we have puppies just entering the early “citizenship” phase of training.  However, the waiting list can and does tend to change from one day to the next.  I have attached a copy of our application package for you, and if you have any further questions, do not hesitate to ask.  You are also welcome to call me directly if you wish at 217-XXX-XXXX.  I spend much of my time with puppies and in meetings, so leave a message if necessary, and I will get back with you as soon as possible.  Thank you again for your inquiry, and I hope we can work together to enhance the quality of life for your little one.  

Sincerely,

~LM Kaydus, CMT, BSA, MAS
Founder, Animals for Autism
AKK National Rescue
Autism Mom 

And even more impressive was how quickly the organization’s board met and voted to approve our application; and how quickly we were matched with our 5-week-old pup.  And even though we had been cautioned because of the lack of trainer names listed on the web site and where they learned to train service dogs; we decided to proceed.  Hindsight is 20/20.  I can only hope that others will learn from our haste and make a more informed decision that might also include advice/counseling from a local autism resource center, discussion the organization with an autism resource center in their geographic area, advice/counseling from knowledgable dog trainers and verifying tax status, business status, and their compliance with regulations.

Consider reading a few of the following blog entries:

Autism Service Dog 101 by Shane Nurnburg of Autism Epicenter
Time to Light a Fire by living legend Lindserella
Hey Pepsi! by Katherine Stone of Stollerderby posted on Babble.com
Another Fleecing of the Autism Community by Liz Ditz of I Speak of Dreams

Just a little light reading to get your started.  Thank you for your patience.  More to follow in the near future.

[Editorial note: My other posts talk of ten families that were part of the Animals for Autism program.  This is mostly true - there were ten families that became part of the program sponsored by the Pepsi Refresh Everything project but there were others caught up in this]

Thirteen families entered into a program with high hopes, high energy and expectations of a better life on the other side.  Autism Service Animals can bring that to a family.

Yes, I said thirteen.

We should not forget the first that brought all of our attention to Siberian Snow Babies’ Animals for Autism.  The family that was to receive a free service dog in honor of Autism Awareness Month,were the Johnson’s.  After all, if we had not found that press release we might have missed all this fun.  They have not had any real contact with Lea Kaydus or any other trainer from Animals for Autism.  This pup was the one Animals for Autism had planned from the get-go to donate free-of-charge.  He had been donated to the training program and all expenses should have already been taken into account, even the cost of paying the trainers.  Which makes me wonder – so what has happened to James?

Then shortly after the announcement of the placements to be funded by the Pepsi Refresh Everything Program, our group was joined by the DiRedo family.  Even though their training costs were not covered by the Pepsi grant their pup, Kino, was to be trained alongside all the others.  Whatever happened to Kino?

And then one last family, with funding in place from a generous benefactor.  The requirements were that it would only be given to a program which was a 501c(3) and must be used prior to the end of 2011.  Animals for Autism claimed to be a non-profit on their Facebook page.  People were told time after time from June onward that the all paperwork had been submitted to the IRS and AFA was simply awaiting their final determination.  When the elusive tax ID number was received it was discovered that it had never applied for non-profit status AND that it did not belong to Animals for Autism or Siberian Snow Babies.  The Spencer family not only wasted a lot of time waiting for the “right” dog to be found and the tax ID number in order to utilize there funding; the family is now in the position that they no longer have the funding.  This could have been utilized somewhere else had they been told the truth.

So what happens now?  To be honest, I am not really sure.  I wish there was an answer that I felt truly satisfied all aspects.  What value do you place on the time that families spent waiting because they believed in the organization providing the excuses.  Those excuses were bolstered by the insistence of the grant program that all was well – that all was on schedule and nobody should be worried.  What value do you assign to this?  Global Giving, would it be acceptable to have treated Ms. Indra K. Nooyi in the same manner that you have treated the families who called with concerns?  Were these concerns forwarded to anyone in the leadership.  Have you read the PepsiCo Values and Philosophy?  Maybe they don’t apply to you but I would think that Pepsi would be looking at your actions since their Values and Philosophy are the foundation for every business decision they make which would include your oversight of their Refresh Everything Project.

Taken from the Pepsi Co website here:

Pepsi Co Values and Philosophy

Our Values & Philosophy are a reflection of the socially and environmentally responsible company we aspire to be. They are the foundation for every business decision we make.

Pepsi Co Commitment

We are committed to delivering sustained growth through empowered people acting responsibly and building trust.

What it Means

Responsibility and Trust form the foundation for healthy growth. We hold ourselves both personally and corporately accountable for everything we do. We must earn the confidence others place in us as individuals and as a company. By acting as good stewards of the resources entrusted to us, we strengthen that trust by walking the talk and following through on our commitment to succeeding together.

Pepsi Co Guiding Principles

We uphold our commitment with six guiding principles. [3 of the 6 shown]

We must always strive to:

1.  Care for our customers, our consumers and the world we live in. 
We are driven by the intense, competitive spirit of the marketplace, but we direct this spirit toward solutions that benefit both our company and our constituents. Our success depends on a thorough understanding of our customers, consumers and communities. To foster this spirit of generosity, we go the extra mile to show we care.

3.  Speak with truth and candor. 
We tell the whole story, not just what’s convenient to our individual goals. In addition to being clear, honest and accurate, we are responsible for ensuring our communications are understood.

6.  Respect others and succeed together. 
Our mutual success depends on mutual respect, inside and outside the company. It requires people who are capable of working together as part of a team or informal collaboration. While our company is built on individual excellence, we also recognize the importance and value of teamwork in turning our goals into accomplishments.

All I am asking is that you hold to your values as a company, as individuals, and honor your commitment.  Show the world that even though you may come out with a bit of a black eye you will do so with integrity.

[Editorial note: I apologize for covering items mentioned in the previous post(s) but there is just so much that has happened and I do want to paint a complete picture.  There really is a wealth of information and to put it all in one post is overwhelming.]

Parents Raising Concerns Over Local Autism Group <- News Channel 20 story

Our life since withdrawing from the Siberian Snow Babies’ Animals for Autism program has been quite the roller coaster.  It was hard enough to admit to ourselves that maybe, just maybe, we had made a mistake in the organization we had chosen to provide our Autism Service Dog.  After all, the “founder” of the organization had a child on the spectrum.  She knew our trials and tribulations, at least to some extent after all, no two autistic children are identical.  Please read my previous post, if you have not already, for some more background.

We wanted to believe that it all was true, that autism service animals could be provided for a minimal cost even with the extensive training that would be required.  This organization claimed that their access to resources and volunteers would allow them to cover most of the costs associated with providing Autism Service Animals.  ”The only costs associated with acquiring one of our animals are for the the training required to prepare them for a career as service animals.  In addition, our trainers have greatly reduced their normal fees to make the dream of owning an Autism Service Animal a reality for more families than ever before.”

It was a dream.  A dream shared by many a special needs family.  We dream of the freedom, of the stability, that could be provided by a well-trained autism service dog.  Many do not believe that dream is even close to a possibility due to the high costs associated with the acquisition.  The promise of only needing to pay for training costs at a highly reduced rate is very appealing.  Animals for Autism promised this.  A service dog for on average $5000.00 which could be paid over a period of one year while your dog was being carefully trained under the watchful eye of a trainer who would be in continuous communication with the family.  Then mention that this organization is planning on giving away an Autism Service Dog in honor of Autism Awareness Month.  That certainly garners attention.

The fees were kept lower by screening and testing donated AKC and UKC puppies.  By securing funding for all veterinary expenses, including spay/neutering, immunizations and microchipping, prior to placement.  Securing “foster care” for the animals’ socialization (also known as puppy raisers) prior to placement.  Providing a consistent diet of nutritionally balanced, high-quality food for the animal for the duration of the program (Lea was very specific that she utilized Purina products).  Animals for Autism would secure donated equipment – tethers, leashes, collars and harnesses as well as a crate or “den” for the animal and then provide a “working vest” and proper credentials, documentation and all health records at time of placement.

Just recently, a reporter, Mike Brooks, from an ABC affiliate in Springfield, Illinois went to try and get some information and maybe some answers.  Ms. Kaydus told Mr. Brooks that the dogs were with donor families learning the basics, and that they only come to her for training sessions.  She said that everything was on schedule and going fine.  When he asked to see the dogs she said that it would not be possible.  This was the story the news reporter was given.  An “anonymous” person called to “inquire” about a service dog and was told that they have the service dog training program on hold until Pepsi gives them the rest of the money.  Pepsi has only given them $25,000 and is holding off on the rest because people are lying about them and saying that there are no dogs.  Due to this, they can’t afford to even feed the dogs right now and so they are in emergency shelters waiting.  They have not yet begun training and they cannot get the dogs out until they get the rest of the money from Pepsi.  Are you hearing this Pepsi (and Global Giving)?  Once they get them back it will take at least 18 months to train.  Anybody is welcome to come out to visit the dogs at the shelter in the meantime.  It was so bad that they didn’t have a Christmas.  Please remember that since May they have received over $5,000 from the families participating in their program AND $25,000 from Pepsi through Global Giving.  This does not even include donations made directly to them on behalf of the families in the program since that has never been fully disclosed.  If you figure that a 40 pound bag of Purina dog food can be purchased for about $30 a bag…why is it that they could not feed the animals?  Especially, if the animals are actually out in their “foster homes” learning the basics.  I believe that the volunteer puppy raisers were donating their time and providing for the puppies during that stage.

Each family seems to be given a version of the story most suitably tailored for them.  How much of what we have been told is true and how much is false?  I cannot even begin to guess.  I do know that I would not wish this upon any family, let alone a family with a child on the autism spectrum.  A child that has been told since May that soon they would have their very own puppy, who would be able to be there for them, no matter where.  A puppy with a name and a face that was apparently a dream too good to be true.

Through this experience I have met and become friends with a group of families I would not have met otherwise.  For that I am grateful.  I am very bitter that you hurt my family.  I am upset that I was not able to stop that from happening.  I am angry that so many refuse to even see it as a problem.  How would you feel had it happened to you?

{Editorial note: I initially planned to link to the various pages of the Animals for Autism website but it has been pulled from the web for some unknown reason. Instead I will post screenshots of their website.]

In April of 2011 my wife and I decided it was time to take the plunge and actively seek a service dog for our daughter.  We had actually been searching for a service dog trainer/training organization for a while on and off for several months.  Most of the organizations we came across required a substantial (we are talking $15,000 – $20,000) amount of fundraising prior to being placed onto a waiting list to be matched with an animal.  That amount just seemed so daunting.  And then we stumbled upon what appeared to be a godsend.  There was this organization in Tallula, Illinois that was placing, free of charge, a highly-trained Autism Service Dog with a child or adult in need in recognition of Autism Awareness Month and World Autism Awareness Day.  We were informed that they were completing certification as a 501c nonprofit and that all donations made during the year would be tax deductible for our donors.  When we went to the website for Siberian Snow Babies’ Animals for Autism (http://siberiansnowbabies.com) we were surprised by how much less their final costs were compared to the others.  Their website stated “By privately funding all of the medical care, various incidentals, foster care and all of the animal’s other expenses, we are able to provide our Autism Service Dogs for as little as $5000.” (See following picture)
This was nothing short of a miracle for us – we knew we could do this!  We decided to skip applying for the free service dog, and begin their normal program.  Our application was submitted and much to our delight was accepted.  We were informed that since we were asking for our pup to also be trained to alert upon detection of peanut that we would need to pay a bit more than the normal $5000 but that we would be given a 10% military discount.  We were ecstatic.  Two weeks later our daughter was “matched” with a beautiful Isabella White Siberian Husky.  A week after we were matched their computer was invaded by a computer virus and they were required to purchase all new computer systems and reinstall all their photo and media programs.  They were unable to provide any updates or photos.

Beginning May 1, 2011 Animals for Autism began a campaign for a Pepsi Refresh Everything Grant in the amount of $50,000.  This grant would allow them to place TEN service dogs free of charge.  How amazing would that be.  Now this was definitely something we would/could and did support.  Our family, like many of the other “fan families” recruited friends, family members and anyone else we could wrangle into our corral.  We received daily contact with Lea Kaydus, founder of Animals for Autism, with Pepsi Power Vote codes to vote on their behalf.  And we did it, we accomplished our goal and Animals for Autism made it into the top 10 and became one of the funded programs.  We (those who began a training program despite not being selected for their Go Blue pup) were offered the opportunity to be part of the Pepsi Refresh Everything grant award, and accepted this opportunity – at this point almost $3000 had been paid to Animals for Autism on our behalf.  The miracle continues.  And yet, there still have not been any updates on our pup’s training progress, no contact with our trainer, no new pictures and our requests for assistance with our own fundraising was met with “we are too busy working on the Pepsi grant at the moment, maybe later.”

While working with the pictures we had received of our pup we noticed that they had been taken back in May of 2007.  All of our pictures had date stamps from 2007 – a red flag pops up and begins to wave.  So I became curious and began to check the other pictures on the site.  All were taken with the same camera and so many of them were two years old or older.  Now one could assume that the camera was just set wrong, since we knew that our pup was born on March 7, 2011 and not May, 2007 but the dates of the pictures on the site ranged from 2007 to 2011.  The 2011 pictures were of the brand new litter with pups up for sale.

Did I mention that 11 pups from two consecutive litters were placed into the training program for 11 families.  I should mention at this point that the reason service dogs are so expensive is the washout rate.  Here is a basic breakdown – one out of forty dogs has the proper temperament to become a service dog and half of those that begin training are unable to successfully complete the training.  And yet all 11 of these were all but guaranteed to be successful as service dogs – another red flag begins to wave.

We wanted to reassure ourselves that we had made the right decision with this company and so we contacted the Springfield Autism Resource Center (SPARC) which is just down the road from Tallula.  After all, Lea Kaydus had listed herself as active in the autism community and as Acting Director of Finance at SPARC.  Surely they would be able to calm our fears.

Unfortunately, none of the people we spoke with knew of Lea Kaydus or Animals for Autism.  They were unaware that there was an organization in their local area training and providing autism service animals – red flag.  How could this be??  They suggested that we contact the Autism Program of Illinois (TAP-IL).  We did this and received the same answer – this really was not helping calm our fears – yet another red flag.  We were finding ads online at various sites (PuppyFind.com and this one in Pakistan for one of the named Pepsi Pups)  Do I even need to say that this was a red flag?  At this point nothing felt right and the people we hoped would be able to alleviate our worries only caused more.  I would also like to have it noted that none of their animals are registered in the county in which they are currently residing, nor the one they previously resided.  They are not licensed by the State of Illinois as a business entity, nor a kennel.  They have never applied for 501c status with the Internal Revenue Service and the tax ID number that they gave to us did not belong to them.

I have spoken to many people.  I have made contact with the Internal Revenue Service, the State Department of Illinois, the Illinois Attorney General, the Illinois Department of Agriculture, the Better Business Bureau of Central Illinois, Springfield Autism Resource Center, The Autism Program of Illinois, Members of Sangamon and Menard Country Animal Control, my Naval Legal Services Office (AFA ignored their letter for information), program managers for the Pepsi Refresh Everything Project and all with very little to show for it.

To this date, Animals for Autism ignores the requests for information, updates from those in its program.  They respond to those inquiring as to how to get their own service animal with a simple – email for info.  I am flabbergasted.  I do not know how to respond but I feel that I must do something, say something, to prevent this from happening to anyone else.

Pepsi, I am sad.  You have lent credibility to this organization by your association.  I realize that the $50,000 you gave to them through Global Giving means very little to you but it did to us.  And the people you have in charge of your Refresh Everything Project have brushed our concerns aside, treating us as mere annoyances.  I wish I could get your attention, and truly get your help but I have to say that I doubt it will ever happen.  I had faith in the good of Refresh Everything but am beginning to think that it is nothing more than a tax write-off for you and a popularity contest for others.  While it has the potential to bring out good in people, and improve the world it seems to have also brought out an awful lot of deceit.  If you would like to know the people I have spoken with a simple email to me will evoke that response unless I receive that email from either Terri or Dennis.  In which case, I really am tired.  Global Giving has told one of the other families involved that my family (really that means my wife and I) are just troublemakers and that we should not be associated with.  Really??  Please walk through along the path I took to reach this point and tell me that you would be free of questions.  A bad case of Pepsi Autism Service Animals can really change your perspective of things.

What I really meant to do here was to introduce a very well-written post by another member of the Pepsi Pup fiasco and ask you to read her post but I got long-winded.  Please read the post by Ashley.  Pass it along to your friends to read.  Tweet about it.  Please don’t let this happen to anyone you know.