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How can a service dog help a child or adult patient with mitochondrial disease?

 

Service dogs

DOWNLOAD THE SLIDES HERE

Learn more and ask questions, such as:

  • How can service dogs help someone with mitochondrial disease?
  • Do service dogs only help people who are deaf?
  • What do service dogs do medically?
  • How can my family apply for a service dog and what is our responsibility?

 

Presented by

John Moon

National Education for Assistance Dog Services (NEADS)

IntroductionThe National Education for Assistance Dog Services (NEADS) is an organization that was established in 1976 and provides well-trained service dogsto persons with disabilities. There are about 100 different accredited groups similar to NEADS in the United States. To find these, go to the web site: assistancedogsinternational.org. This is a great source for reputable organizations, and will direct you to organizations to fit specific needs. [Slides also accompany this presentation and can be viewed at http://www.mitoaction.org/files/NEADS.pdf]

What are NEADS dogs?NEADS dogs come from reputable breeders as well as from Guiding Eyes (guide dogs for the blind). Assistance dogs need to have a more mellow personality than guide dogs ("seeing eye dogs") because assistance dogs need to wait for instructions. Guide dogs for the blind, on the other hand, are more assertive and often need to take the initiative. Dogs (while they are puppies) that do not have the right personality for a guide dog can be used as assistance dogs and will be sent to NEADS.

TrainingThe training process involves enormous amounts of time and effort and is supported by over 300 volunteers in New England who help raise these puppies and transport them to vets appointments, etc.

NEADS dogs begin their training at 8 weeks of age. The Early Learning Center for NEADS dogs is located in Princeton, Massachusetts in a pastoral setting on 18 acres of land. Puppies are exposed tomany types of stimuli so that they are less distractible as adult dogs. For example, they are exposed to distractions such as vacuum cleaners, trucks backing up, airplanes flying overhead, squirrels, flowers, etc.

After 8 weeks at the NEADS Early Learning Center, the puppies go to one of 13 correctional facilities used for the special training of these dogs.  Here, inmates (who have been carefully screened for both ability and temperament) keep the dogs with them and train them 24 hours a day for 5 days a week. Trainers from NEADS go in every week to standardize the training. On Friday afternoons, a volunteer "puppy raiser" goes to the correctional facility and picks up his/her dog for the weekend. During the weekend, the dog will go to the mall, food shopping, drug store, soccer game, or wherever the volunteer goes in order to get the puppies used to these activities so that they will not be "unsettled" by any activity.  These volunteers are an essential component of the socialization of these assistance dogs.

At 18 months of age, the process to match the assistance dog to a human partner begins. 

Matching  When the puppy is fully trained, he or she is ready to be matched to a human partner.  Persons who are requesting a service dog first visit the NEADS web site and fill out an application.   Once this is received, a phone interview is conducted by the Director of Client Relations. This helps to narrow even further the needs of the person requesting the assistance dog. Finally, an in person interview is held. In order for the correct dog to be matched to it's partner's specific needs, it is essential for NEADS to see the size of the person, how they move, etc.

After the human needs are clear, the right dog is sought. The trainers who see the dogs and inmates every week talk with the Client Relations Director to see which client might be best matched with a specific dog. The first person on the "request for dog" list is not necessarily the first person to get the assistance dog; the match is made by personality of dog and needs of the person making the request. Once a match is made, the human partner spends a week or two at the Princeton campus for training. The facilities include fully equipped units to simulate the homes the dogs will be going to.

There is a lot for both the human and dogs to learn, and at first they train from about 10 am until 4 pm every day.  They may also take trips into town so the dogs and partners can see what "real life" will be like together.  After 3- 4 days the dogs are brought to the human partners for more bonding - they stay overnight with them.  This process allows the bond to develop between the dog and it's human partner.

Sometimes the match doesn't work the first time. If a particular dog and human are not warming up to each other, NEADS will swap the dog for another until a perfect match is made.The matching process is done with great deliberation by folks who have been doing this for over 20 years. Although the matching process is based on an application and questionnaire, it is alsodone by "feel"; that is, the match has to feel right to both the dog handlers and especially to the human partners.

CostThe cost to raise and train assistance dogs can run from $20 - 30,000. This is a large sum of money and most people cannot afford this. NEADS (a non-profit organization), therefore, works with the clients to help raise some funds for NEADS. This accomplishes more than just raising money. It builds bonds between the dogs, their human partners and their communities. Clients unable to raise money are not denied the help they need, but NEADS does try to encourage some fund raising effort.

Kinds of Dogs UsedMost often the dogs used as assistance dogs are golden retrievers, labrador retrievers, collies, poodles, or labradoodles, to name a few of the more common breeds.  The important aspect of the dog is that they have the personality and ability to support specific human needs. 

A commonly asked question is whether a family dog - one already owned by a person in need - can be trained to be an assistance dog.  The answer is yes, butthese dogs won't have had that early socialization.Some dogs may have the temperament and potential to become an assistance dog. They will NOT,however, be certified by NEADS (only those raised from puppies can have that certification). Accreditation is important to be sure that dog training programs meet the standards of  training and care required.

What can NEADS dogs do? First and foremost, NEADS dogs are companions who display a very specific loyalty to their human partner. They are trained to meet the specific needs of their human partner - often these revolve around the activities of daily living. For example, they can pick up dropped items or help put shoes & sox on and off. They are a "loveable tool." For clients in wheelchairs, they can help pull doors open and closed. They can help MS patients who have balance issues and prevent injuries. For children with autism, they can provide a social link with others. 

Children who use assistance dogs must have a parent or "facilitator" to help care for the dog. Dogs often help draw children out to socialize and to become more independent.  When a parent needs to, for instance, go to the basement to do the laundry, a child can be left "alone" if the service dog is by his side. The dog can also serve as a bridge between the child (or anyone) who has a service dog and the community. The focus becomes the dog rather than the disabled person: "What is your dog's name? What does he do?"

The very act of caring for assistance dogs provides physical and occupational therapy opportunities. You brush your own teeth - but also must learn to brush your dog's teeth; brush your hair, brush the dog's hair. Putting on and taking off the leash requires hand coordination. Even nonverbal commands require a form of communication for those persons who may be nonverbal.

Other Considerations Especially for Mito patientsNEADS dogs are not trained to detect low insulin, peanut oil, or imminent seizures.  These are very special traits and you can find dogs specially trained for this through the international dog site noted earlier.  Assistance dogs are not meant to pull you away from danger should you not be paying attention to your surroundings. Assistance dogs need to be kept close to you on a leash except when they are unleashed (for at least one hour a day) for exercisein a dog park or fenced in yard.

Patients with Mitochondrial disease suffer from fatigue and weakness, therefore going out and buying pet food can become burdensome. A company called Pet Flow will deliver pet food to your door. NEADS has a good relationship with this company and they provide a large variety of dog foods.

Many adult mito patients live alone and would benefit from an assistance dog, but finances are often an issue. Caring for a dog can get expensive (food, vets fees, etc).  There are organizations that will help with some of these financial issues. Some veterinarians also donate or discount the care they provide if the owner has a disability and uses an assistance dog. Patients with mitochondrial disease (or others) should not be shy about asking for this kind of help.NEADS also has scholarships to help defray the cost of caring for a dog. NEADS can help with special devices for disabled adults who live alone and have assistance dogs.

Having a dog is a lot of work but that "work" often helps people with disabilities look beyond themselves, because now they have someone they have to take care of.

Americans With Disabilities ActAssistance dogs, service dogs, guide dogs, or any dog used to assist a disabled person has full right of access into public buildings (that means hospitals, stores, restaurants, etc). Sometimes the proprietors of these locationsare unaware of or unfamiliar with the law.

NEADS will be happy to help. If you are challenged, you can carry with you an ADA card which has a phone number to call and lists your right of access. You may ask the proprietor to call the police while you wait.

These rights from ADA extend to housing rights as well. Whether you live in a single family house, an apartment, or a condo, the "no pets allowed" does not apply to assistance dogs. A service dog is not a pet, it is a device which helps you live your life. If there are specific questions or issues, the ADA web site should be consulted.

The Decision Process:Should I Get an Assistance Dog? The decision process about whether an assistance dog is right for you is as important as the training and matching process. Here are some questions to consider:

  • Am I a good fit for a dog?
  • Am I afraid of dogs?
  • Do I have allergies?
  • Do I have the ability to care for a dog's needs?
  • Does my family have the ability to care for a dog?
  • Will my family benefit from having a dog in the house?
  • Do I travel a lot?

Also, children must be 6 years of age or older and have a parent/facilitator to provide for the dog.  Anyone who is considering requesting a service dog cancontact Heidi Coleman atredtape@mitoaction.org or www.caninesforkids.org

Other contact information:

John Moon: jmoon@neads.org

978-422-9064 X 18

www.NEADS.org

 NEADS welcomes anyone who wishes to visit them as well - in Princeton, Massachusetts.

 

 Submitted by

Joanne M.Turco, RN, MS

For More Information:

 

"Service Dog Boot Camp for People with Mitochondrial Disease: a Survival Guide" ServiceDogHow-To.pdf 

provides information regarding:

  •  Finding a Service Dog organization that can meet your physical, medical, and emotional needs
  •  Suggestions for Interviews and information to share in order to ensure the best possible SD match      
  • Fundraising tips
  • Planning and preparing for a dramatically increased activity level
  • Tips for energy conservation
  •  Meeting your SD's needs despite your physical limitations
  •  Integrating your SD into your home life      
  • One person's account of the emotions associated with the life-changing nature of acquiring a SD

Are you deaf or hard of hearing and interested in obtaining a Hearing Dog?  Click here to read "Hearing Service Dogs: Ears on Duty" .

 

 

Q: What is the ADA definition of a Service Dog, and which laws protect the rights of a person with a service dog? 

Effective March 15, 2011, a "Service animal means any dog that is individually trained to do work or perform tasks for the benefit of an individual with a disability, including a physical, sensory, psychiatric, intellectual, or other mental disability."  (More ADA info can be found here.)  In order to be a service dog, the animal must be "individually trained" to "perform one or more tasks" that are only functional within the context of the person's disability.  The dog has to actively perform a specific task, dependably and successfully on your command, that your disability prevents you from doing without assistance.   A "task" is a specifically trained skill that is not considered a "naturally occurring behavior." The following occurrences are behaviors and do NOT count as trained tasks:

-protection of person or property
-emotional support
-companionship (even for individuals with agoraphobia or anxiety)

Q: Who is eligible to have a service animal?

In the United States, disability is a legal, not medical, determination. Only a judge can say for sure whether or not a person is disabled. A doctor's opinion, while an important piece of evidence, does not by itself qualify a person as disabled.  Congress defined "disability" in the Americans with Disabilities Act of 1990 as follows:

The term "disability" means, with respect to an individual:

(A) A physical or mental impairment that substantially limits one or more of the major life activities of such individual;

(B) A record of such an impairment; or

(C) Being regarded as having such impairment.

A person must fit the legal definition of "Disabled" in order to receive assistance from a service dog in a public place.  A service animal is legally considered an "adaptive/assistive device;" something used by a person with a disability in able to restore function or provide accessibility to a major life function (such as mobility, hearing, seeing, grasping objects, etc.)   Access rights belong to the Disabled Individual, not to the Service Dog.  If a fully trained, public access-tested service dog is not serving an adaptive/assistive purpose for a legally disabled individual, the dog does not have public access rights at that time.  (Special rules may apply for Service Dogs in Training.)

Q: Is a service dog appropriate for everyone with disabilities?

Service dogs are not for everyone.   Questions to consider if you want an assistance dog:  responsibilities;   reasonable expectations ; blunt, but accurate list of "points to consider" before applying for a hearing dog with one ADI-certified, well-respected organization. 

Q: What makes an assistance dog a Service Dog? 

The Service Dog Minimum Standards: http://www.deltasociety.org/Document.Doc?id=373 documents the recommended characteristics and minimum set of skills required of all service dogs.  This includes:

The necessary health, temperament, and obedience of the dog

health/ and safety of the public, handler, and dog. (Delta Society together with ADI and IAADP.) Includes: difference in task vs. behavior; health; temperament; and obedience. The SDMS addresses 'behaviors,' not 'tasks.'

Also includes minimum standards for the handler in order to ensure competence and ability to maintain control, safety, discipline.

What are 'behaviors?' General obedience commands: sit, stay, down, off, up, jump, heel, and recall ('come'.)   Actions such as greeting people/other dogs and then returning to "work mode" and ignoring the distraction, and eliminating on command are behaviors, albeit complex ones.

 

Q: What are Therapy Dogs and Social Dogs? 

That's a really good question!  Unfortunately, there is no easy answer.  As of this writing, the only assistance dog title that is legally defined is Service Dog, and there is no legal ADA-protected definition for Therapy and Social Dogs.  If you are considering training or receiving a dog with one of these titles, it is extremely important for you to ask about the trainer's or organization's selection criteria, training, and placement policies for these dogs before you begin any training or fundraising.  The dog's title is not as important as its ability to meet your needs.   

Service Animals are legally defined (Americans With Disabilities Act, 1990) and are trained to meet the disability-related needs of their handlers who have disabilities. Federal laws protect the rights of individuals with disabilities to be accompanied by their service animals in public places. Service animals are not considered 'pets'.

Therapy Animals are not legally defined by federal law, but some states do have laws regarding hygiene and behavior standards for dogs that work with the public in schools, hospitals, and other facilities. Therapy dogs are well-trained pets that are trained to participate in animal-assisted therapy, and other activities, as well as providing emotional support to individuals with and without disabilities.  A therapy dog interacts with lots of people in the course of its work, and goes home with its owner/handler at the end of the day.  Therapy animals usually are not service animals and their owner/handlers are not disabled.  For this reason, Therapy Dogs do not have public access privileges.  Therapy Animal Industry Standards can be found here.

Pet Partners is a therapy/social animal program created and managed by the Delta Society. http://www.deltasociety.org/Page.aspx?pid=259   Animals are screened, trained, and registered (not certified) per program guidelines, and function as Therapy Animals (described above.)  The biggest difference between the two programs is that the Pet Partners program is open to a variety of domesticated animals in addition to dogs. 

Social Dogs have no (federal) legal definition at this time, so the definition can be highly variable between organizations and trainers.  In general, social dogs meet or exceed therapy dog behavioral standards and participate in animal-assisted therapy, but live and work with only one family.  Some social dogs are trained to perform tasks for an individual with disabilities, often a child, and meet the definition of a service animals rather than a pet, and are granted public access.  In most cases, however, social dogs require the assistance of an adult facilitator at all times while in public, especially in the case of social dogs for children with disabilities.  In some cases, when the child is older, the ADI public access test can be re-administered without the adult facilitator, and the social dog would then be considered a standard Service Dog.  It is extremely important for a prospective social dog handler-facilitator/disabled child team to carefully research the organization or trainer's definition of a Social Dog before committing to training.

Q: Where do Service Dogs come from?

People with disabilities are partnered with service dogs in three ways: Established organizations, private trainers, and "owner-trained."

Established Assistance Dog Organizations: There are hundreds of assistance dog training operations throughout the United States and the world.  Each organization has its own animal breeding and/or selection processes, training methods, application and acceptance criteria, and more.  Assistance Dogs International is a non-profit organization that exists as a collaborative effort among service dog training organizations to create and maintain minimum standards and ethics that all member organizations must follow.  Membership and accreditation by ADI is not mandatory, but selection of an ADI-accredited organization ensures that minimum safety and behavioral standards will have been met.  For more information about ADI minimum standards, read here.2

For a list of all ADI-accredited programs in the United States, read here.  

Self-training or Hiring a Trainer: 

Countless owners have "self-trained" their dogs to perform specific tasks. There are pros and cons to doing so. Private trainers can be expensive, but they can custom tailor a program for the specific needs of a person, especially individuals with hearing loss, Autism, psychiatric disabilities. Unfortunately, many dogs wash out before they can become service dog material, and a person might go through several dogs before finding one that is right for the work. Self-training is difficult, and also runs the same risk of washing out several dogs before finding the right one. But many who have self-trained their dogs have a strong bond and partnership as a result of this work. Usually, people who self-train have very good mobility or caregivers to help out, have had one or more service dogs in the past and have had some training experience, even if only with their own dogs. Individuals can hire a trainer as well and some of these trainers assist in "puppy selection".

The Delta Society has compiled a list of resources for individuals seeking private Service Dog, Therapy Dog, or social Dog training:

Service Animal Trainers, Organizations & Resources (CLICK HERE)1

 

Service Animal Trainers & Training Programs

Delta Society's Service Animal Trainer Directory is unique, searchable and comprehensive. In addition to being able to search by your location, inside or outside of the U.S., you can also search by the type of disability for which you need an animal trained. CLICK HERE to begin your search.

When choosing an Assistance Dog trainer, be sure that the trainer has experience teaching dogs the tasks that you need the dog to do in order to meet the ADA description of a Service Dog.  Here's an  ADI-accredited organization that will train and certify your own dog: http://www.supportdogs.org/  (Note: they only certify dogs they train, not owner-trained animals.)

Owner-Trained Assistance Dogs

Canine obedience and task training is most successful when started early, by experienced animal trainers.  There are many training methods and goals, which are determined by the type of work the dogs will ultimately do.  Some individuals with disabilities are already experienced dog trainers, and may be able to learn the training skills necessary for training service dogs.  However, self-training an assistance dog is hard work, takes one to two years to complete initial training, and may involve situations such as "retiring" a service dog in training due to medical, behavioral, or temperament problems.  For more information about choosing a dog for self-training, click here.

Here's an organization that will administer the public access test and certify home-trained SD's: "The Gift of Sunshine"  is located in PA, and there's a chance that you may need to travel to them for testing.

Here are more resources for people interested in privately-trained of owner-trained assistance dogs:

Books and videos with info about teaching SD tasks 

http://sdog.danawheels.net/books.shtml

Delta's "Professional Standards for Dog Trainers" e-book http://www.deltasociety.org/Document.Doc?id=374

Training videos, from basic obedience through advanced training; clicker training.  http://www.takeabowwow.com/

Obedience Training Standards, Therapy Dog Standards, and SD Public Access Standards:

Obedience training is an important component of Assistance Dog training.  Here are examples of minimum safety and behavioral standards for Therapy Dogs and Service Dogs:

This is the Canine Good Citizens test: http://www.akc.org/events/cgc/training_testing.cfm

Here is the Minimum Standards for Therapy Dogs International (in addition to the CGC test) http://www.tdi-dog.org/images/TestingBrochure.pdf

Here are the Pet Partners Skills and Aptitude tests: http://www.deltasociety.org/Page.aspx?pid=264

ADI Public Access Test: http://assistancedogsinternational.org/publicaccesstest.php

Naturally, the ADI standards for public access are very strict.  As stated earlier, the big difference between a SD and all other kinds of assistance dogs is disability-specific task training.  In addition,  ADI-accredited SD organizations  must provide proof of public safety by the administration of ADI's Public Access Test. This test has some similarities to the CGC and Therapy Dog testing, but it also includes test items that shows learned obedience over instinct. Here are some examples of this:

The dog must ignore food within reach unless the handler gives the dog a command to "take it"

The dog must not lose focus or show a reaction to loud noises, crowds, small children poking/patting the dog, presence of other dogs (SD's as well as pets, including those without training)

Please note that the public access test serves as guidelines for obedience only.  In order for a dog to be recognized as a Service Dog under the ADA, the dog must also be trained to perform specific tasks on command, and the tasks must be related to the human partner's disability.   For examples of Service Dog tasks, click here.

Q:  My dog has passed the Canine Good Citizen and TDI tests, but his fear of cars is preventing him from passing the ADI public access test.  He performs tasks for me, such as picking up dropped objects and bringing my cell phone when I ask him to.  Can I still call him a service dog?

Yes, absolutely. Many therapy dogs are capable of learning traditional SD tasks, and can function as a "home companion dogs," which are basically service dogs without public access.  However, since your dog is meeting the ADA definition of a Service Dog, you are entitled to keep your dog even if pets are normally not permitted.  This is where ADA laws become controversial;  according to the ADA, you have the right to bring your dog into public places.  However, you know that your dog is unable to meet ADI's minimum standards for public access, which means that the well-being and safety of your dog, yourself, and the public may be compromised.  It is up to you to make a responsible decision to keep your dog at home when you are in the community, or to take him with you despite the safety issues that prevented him from passing the ADI public access test.

Footnotes

  1. These lists of organizations and private trainers are provided for informational purposes only and do not imply MitoAction's endorsement of any organization or individual listed here. 
  2. Please note: the ADI Public Access Minimum Standards Test is not a licensing exam; the Public Access Test is used by ADI-accredited programs as a tool to measure the SD's obedience and the human partner's ability to maintain control of the dog at all times in a variety of public settings and situations.   

"How do I know if an assistance dog would help me? Is it more trouble than it is help?"

These questions are important ones if the person is thinking about training for an assistance dog. Some others you may need to ponder:

1. Am I OK with the attention having an assistance dog draws to me in public?

2. Am I OK with people stopping me and asking what the dog does for me?

3. Am I OK with taking a dog everywhere I go every day of the year, whether it's a quick trip to the store or a vacation thousands of miles from home?

4. Am I OK with maintaining extremely strict behavior principles that are common actions for pet owners, such as feeding a dog table scraps or permitting a dog to rush to greet visitors to their homes, because a service dog is NOT a pet and can never be treated like one?

5. Am I OK with having to pack a "bag" to go anywhere in order to make sure I have the things needed to travel with a dog?

6. Am I OK with occasionally being confronted and denied access?

7. Am I OK with having to care for and groom a dog daily?

8. Am I OK with taking a dog outside to go to the bathroom first thing every morning, last thing every night, every 3 or 4 hours throughout the day, and immediately cleaning up after a dog when away from home?

9. Am I OK with being responsible for maintaining 100% control of a dog's behavior, obedience, and safety at all times, and that this may occasionally mean changing my plans and frequently dividing my attention between my dog and whatever I am doing?

10. Am I OK with placing the comfort and well-being of a service dog over ALL other household animals, including re-homing longtime pets if there is any sign of dissent?

11. Am I capable of stopping any activity and immediately following a hearing dog every time he alerts me to a sound?

12. Am I capable of providing all of the dog's care ( or at the very least being the strongest participant in its care, in the case of a handler with significant physical disabilities?)  If this is the case, are my personal care attendants 100% committed to making sure that the dog bonds to me, not them, and that all the necessary training and care guidelines will be followed at all times? 

 

 

 

 

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Comments

shannnonMK's picture

shannnonMK

05/31/2011

I  have what is call a therapy dog right now- but she is more then that.  Shia need more training and can not afford the training when i am having trouble breathing or walking she is the one who responds to get help.  I have Complex 1 with quite a few myopathies.  I cant image living with her now that she has been in my life for more 18 monthes she also helps out with depression and gives and hope.  the big goofy face and some that loves with with my diapers is nice.  now i am gonna cry she loves in the best a dog can and i wish a could get a her a red coat to go where i go so people wont discrimanate  so much as much against me.  I have been cll a drug addict- almost arrested and had to put out papers showing that i am really fighting something real i believe everyone with mito should have a service dog

red-tape's picture

red-tape

06/09/2011

Hi Shannon,

I've mailed some resources to the email address you used to register with MitoAction.  If you haven't received my email yet, or have changed your email address, please let me know. 

Take Care,

Heidi

redtape@mitoaction.org