Service Dogs and Autism

  • By advocatesforautism
  • 30 Jan, 2017

Need to justify purchasing a service dog?

Unfortunately for families and parents of children like those described above, there is no break from this constant demand. Children and adults with the diagnosis of autism are unique in many ways:
• The child with Autism does not connect well with his or her environment.
• Autism manifests itself most strikingly as impairments in communication and in the formation of social relationships.
• Children with Autism are often nonverbal, or when they are verbal they usually do not use the skill to actively communicate with other people in their environment.
• Many children with this disability have a strong need for a structured, routine environment; change creates feelings or fear and/or anxiety. Some children even exhibit serious behavioral changes including, at times, self-injury.
• Another behavior common to Autism is a tendency to wander away. Parents often refer to their children as “Houdini,” stating they are able to escape from even the most secured environment and the family usually has multiple locks on every door and window in the home. When this happens, the child may be in a life-threatening situation, especially if they are already out of the physical sight of their caregiver.
• Children with Autism often don’t respond to their names consistently, if they respond at all. They rarely understand the many dangers in their environment; an approaching car or a stranger with ill intentions. Many parents report their greatest fears center on their child being missing or if they look away only for a minute; they will find their child gone or darting out into the path of an oncoming car.
With the use of a canine companion many families and adults living with autism are able to take their eyes off their child for a brief moment to attend to their other children, answer the phone or even use the bathroom alone!
These parents are quite adept at creating opportunities for their children which in turn makes it so their children can remain living with them. To remain as an intact family with a developmentally disabled child is rare. Not only do these parents find a way for their child to remain in their care, saving the state millions of dollars over a lifetime, but found a way for their child to stay living at home and do so safely. The safety is the key.
The dog requires specialized training costing thousands of dollars, but without this training, the dog will simply be nothing more than a pet; another living being for the parents to care for.
A service dog’s sole purpose for a child with autism is to respond to the child in many ways, such as: The dog will interrupt the behavior of self-harming; social Isolation is lessened as the focus shifts to the dog, opens doors for socialization; enhances verbal skills by using commands for the dog; the dog will crawl onto the child's lap and calm the child; and lastly in LOCATING A LOST CHILD – The dog will have the ability to find child by various methods, i.e., tracking, area search, building search.
This is NOT ordinary obedience training that an owner brings the dog to the local vet, vocational school or even use of a video can do. This is training that only a specialized behaviorist can do and the particular behaviorist chosen for this task requires travel on the part of the parents. The parents and anyone who interacts with the dog will need to undertake this type of training in order to ensure the dog’s purpose and role is carried at all times. This may include but not limited to: The parents, the child’s staff, the siblings, and of course the child himself will also participate at some point
The bottom line is safety. This canine companion plays an important role along with the use of locks, fences, 911 and tracking devices to keep a child with autism SAFE and HOME. Having this dog is much more than a pet. It is a large sacrifice on the part of the family. The family has already put all the locks, bolts, video monitoring, GPS devices and alarms on their home that they can. The potential for liability far outweighs the cost of the service dog.
For more information: www.autismservicedogsofamerica.com ; www.autismassistancedog.com ; www.4pawsforability.org

Copyright - Advocates For Autism, LLC and Sally J Colletti

Advocates For Autism News

By advocatesforautism 27 Aug, 2017
Look up the word adulting in the Urban Dicitionary and you will find "Adulting - Verb - requires action to do grown up things and hold responsibilities such as, a 9-5 job , a mortgage/ rent , a car payment, or anything else that makes one  think of grown ups.  Used in a sentence: Jane  is adulting quite well  today as she is on time for work promptly at 8am and appears well groomed.   #adulting #responsible #responsibilities #bills #grown up

Just when we thought our adult children with autism were the only ones lacking in skills such as balanding a checkup, changing a lightbulb and learning to balance it all, we find out many others their age lack the same skills.   But...our kids really did have an excuse.  Well, there are some of us who were helicopter parents or there were some who thought having the best grade in calculus was going to win their autistic child friends.  I must say, the best, most important skill I taught my son was how to tell a joke.  He has a sense of humor and he can "fake until he makes it".  However, because he, like so many with autism focused on how to get through the school day with all the sensory bombardment, changes, the challenges of learnng in a large classroom, he had difficulty learning the academics; the basics required in math to budget his paycheck, read a map, a cookbook, or learn how to write a letter.  

Don't get me wrong, my son is a success in that he has a part-time job, some friends and a good well-rounded life that we never expected to occur.  But all of this takes work, planning and diligence on those of us in his cirle of support.  I have noticed the longer he is away from school, now four years, the less he is able to write a complete sentence legibly, read for leisure and do simple math.  Like many who graduate and move on into world, his routine becomes more restricted, as if to control this huge world he was catapulted into.  

So starting in the late Fall, early Winter, Advocates for Autism, LLC will begin to offer a series of classes that will focus on gaining these necessary skills.  Many of our kids will have supportive type living arrangements, but they cannot lose those skills they worked so hard to learn all through their school years.  This is a chance to gain them back or even learn them for the first time, make a new friend, and have fun while doing it.   This is for the Binghamton NY area only.  However, we may be providing cirriculum that other communities can purchase to do their own programs.  Stay in touch with the website, Twitter, and Facebook for updates.  



(Adulting with Autism 101 - copyright 2017 - not to be used without permission of Advocates for Autism, LLC)
By advocatesforautism 12 Aug, 2017
Telemedicine -- connecting health care providers and patients via computer or smart phone for diagnosis and treatment -- has been making it easier, and more cost-effective, to "see" the doctor. Using a camera-enabled computer or smart phone, patients with common health concerns can get some diagnoses without leaving their homes. Emergency room doctors and nurses are able to communicate with their peers in larger trauma centers via computer, as well.
Specific to Autism is the is the challenging situation to find experts in remote geographical areas including here in Binghamton, NY. This is just one area of the country where it is more typical to see a lack of highly trained professionals to diagnose, consult, and prescribe psychotropic medications; and the outlook remains bleak. Technological advancements, such as telehealth, can offer an alternative to services provided in-person that may increase access of individuals with ASD to experts (e.g., behavior analysts) and at a fraction of the cost.
Even more difficult to find are the professionals who are certified in applied-behavioral analysis, or a CABA. This is a form of therapy that is covered by health insurance. For example, in NY State, Excellus Blue Cross/Blue Shield will cover this therapy at a co-pay of $25.00 to subscriber under the Platinum level of care. This same health insurer will also cover telemedicine for the same price. We know that in the managed care realm of providing services, the NY State agencies of Office of People with Developmental Disabilities and Office of Mental Health are already providing this service, of which it is paid for by Medicaid funds. Currently, one solution for families is to have a provider who is over 5 hours away fly in, see the patients all on one day, prescribe the medications and then leave. This option obviously leaves parents with no one to follow up with for medication adverse reactions that can sometimes happen on a new medication. Instead they have to bring their children, both young and adults to the local crisis center where, a person with autism quickly finds out that is not the appropriate service.
"Autism spectrum disorders, now estimated to affect one in 68 children, are just as common in rural America," said Heitzman-Powell, research assistant professor of the University of Kansas, Life Span Institute "but ABA-trained professionals are rare."
While involving parents in training is critical, according to the National Research Council, little is known about how to make training resources available to families in remote areas or with limited capacity to travel to facilities for one-on-one practice and coaching, said Heitzman-Powell, a licensed psychologist and a board-certified behavior analyst. Tele-medicine will provide that answer.
Now a new University of Iowa study, published recently in the journal Pediatrics, shows that parents with children on the autism spectrum are able to have a specialist address challenging behavior in these children by interacting over the computer, too -- and at less than half of the cost of receiving similar care in person.
This means not just ABA as a therapy that can be provided through a television screen, but consults on behaviors and medical issues, particularly troubleshooting new medication regimens that are limiting the person and their family from enjoying more activities together. The parents or caregivers can follow-up more easily in these sessions.
"A lot of kids who are on the autism spectrum have significant problems with behavior," says Scott Lindgren, PhD, professor of pediatrics in the Stead Family Department of Pediatrics at University of Iowa Carver College of Medicine, and lead author of the study. "These kids may have trouble following directions, or have problems when there are changes in their schedule or routine. They also don't always have good enough communication skills to be able to explain to someone why they're getting upset or having a meltdown."
Already we are seeing providers of telemedicine set up businesses with one being The Autism Tele-medicine Company. They state that they founded the company because they "bring not only the medical expertise, but also the three dimensional experience with the disorder that comes from living with it at home. This combination renders us vastly more empathetic and sensitive to what you may experience all the way from the crushing time of autism diagnosis through your child's adulthood." However, again, they are a private health provider and it is still a provider's choice as to whether or not they will accept public or private health insurance.
The major research centers in the country, particularly those under the National Institute of Health's Research on Autism Centers of Excellence not only provide this service but continue to research its effectiveness. These centers are located at UCSF, Boston University, Emory, UCLA, UNC at Chapel Hill, University of Iowa, and Yale among others.

Copyright - Advocates For Autism, LLC and Sally J Colletti
By advocatesforautism 30 Jan, 2017
The Fifth Edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) was released at the American Psychiatric Association’s Annual Meeting in May 2013. ASPERGER'S Disorder no longer is a Diagnosis all its own. The symptoms must meet these criteria now. See below.
Must meet criteria A, B, C, and D:
A. Persistent deficits in social communication and social interaction across contexts, not accounted   for by general developmental delays, and manifest by all 3 of the following:
1. Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure   of normal back and forth conversation through reduced sharing of interests, emotions, and affect   and response to total lack of initiation of social interaction,
2.   Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly   integrated- verbal and nonverbal communication, through abnormalities in eye contact and body- language, or deficits in understanding and use of nonverbal communication, to total lack of facial   expression or gestures.
3.   Deficits in developing and maintaining relationships, appropriate to developmental level (beyond   those with caregivers); ranging from difficulties adjusting behavior to suit different social   contexts through difficulties in sharing imaginative play and in making friends to an apparent   absence of interest in people
B. Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two   of the following:
1.   Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor   stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases).
2. Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive   resistance to change; (such as motoric rituals, insistence on same route or food, repetitive   questioning or extreme distress at small changes).
3.   Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong   attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative   interests).
4.   Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment;   (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures,   excessive smelling or touching of objects, fascination with lights or spinning objects).
C.   Symptoms must be present in early childhood.
D.   Symptoms together limit and impair everyday functioning.

There are also 3 “Severity Levels”

Level 3: ‘Requiring very substantial support’
Severe deficits in verbal and nonverbal social communication skills cause severe impairments in functioning; very limited initiation of social interactions and minimal response to social overtures from others.
Preoccupations, fixated rituals and/or repetitive behaviors markedly interfere with functioning in all spheres. Marked distress when rituals or routines are interrupted; very difficult to redirect from fixated interest or returns to it quickly.
Level 2: ‘Requiring substantial support’
Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with supports in place; limited initiation of social interactions and reduced or abnormal response to social overtures from others.
RRBs and/or preoccupations or fixated interests appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts. Distress or frustration is apparent when RRB’s are interrupted; difficult to redirect from fixated interest.
Level 1: ‘Requiring support’
Without supports in place, deficits in social communication cause noticeable impairments. Has difficulty initiating social interactions and demonstrates clear examples of atypical or unsuccessful responses to social overtures of others. May appear to have decreased interest in social interactions.
Rituals and repetitive behaviors (RRB’s) cause significant interference with functioning in one or more contexts. Resists attempts by others to interrupt RRB’s or to be redirected from fixated interest.
What if One Size does not fit all?
Does your child fit the new criteria? Or if you are an adult with ASD, do you? What if those with Asperger’s Syndrome do NOT meet the new criteria above, as I suspect many with Asperger’s won't then what are their options?
Try these diagnoses on for size:
A 05 Social Communication Disorder
T 00 Borderline Personality Disorder
T 02 Avoidant Personality Disorder
T 04 Antisocial Personality Disorder (Dyssocial Personality Disorder)
These are just a sampling. See http://www.dsm5.org for more information.
Copyright - Advocates For Autism, LLC and  Sally J Colletti
By advocatesforautism 30 Jan, 2017
Unfortunately for families and parents of children like those described above, there is no break from this constant demand. Children and adults with the diagnosis of autism are unique in many ways:
• The child with Autism does not connect well with his or her environment.
• Autism manifests itself most strikingly as impairments in communication and in the formation of social relationships.
• Children with Autism are often nonverbal, or when they are verbal they usually do not use the skill to actively communicate with other people in their environment.
• Many children with this disability have a strong need for a structured, routine environment; change creates feelings or fear and/or anxiety. Some children even exhibit serious behavioral changes including, at times, self-injury.
• Another behavior common to Autism is a tendency to wander away. Parents often refer to their children as “Houdini,” stating they are able to escape from even the most secured environment and the family usually has multiple locks on every door and window in the home. When this happens, the child may be in a life-threatening situation, especially if they are already out of the physical sight of their caregiver.
• Children with Autism often don’t respond to their names consistently, if they respond at all. They rarely understand the many dangers in their environment; an approaching car or a stranger with ill intentions. Many parents report their greatest fears center on their child being missing or if they look away only for a minute; they will find their child gone or darting out into the path of an oncoming car.
With the use of a canine companion many families and adults living with autism are able to take their eyes off their child for a brief moment to attend to their other children, answer the phone or even use the bathroom alone!
These parents are quite adept at creating opportunities for their children which in turn makes it so their children can remain living with them. To remain as an intact family with a developmentally disabled child is rare. Not only do these parents find a way for their child to remain in their care, saving the state millions of dollars over a lifetime, but found a way for their child to stay living at home and do so safely. The safety is the key.
The dog requires specialized training costing thousands of dollars, but without this training, the dog will simply be nothing more than a pet; another living being for the parents to care for.
A service dog’s sole purpose for a child with autism is to respond to the child in many ways, such as: The dog will interrupt the behavior of self-harming; social Isolation is lessened as the focus shifts to the dog, opens doors for socialization; enhances verbal skills by using commands for the dog; the dog will crawl onto the child's lap and calm the child; and lastly in LOCATING A LOST CHILD – The dog will have the ability to find child by various methods, i.e., tracking, area search, building search.
This is NOT ordinary obedience training that an owner brings the dog to the local vet, vocational school or even use of a video can do. This is training that only a specialized behaviorist can do and the particular behaviorist chosen for this task requires travel on the part of the parents. The parents and anyone who interacts with the dog will need to undertake this type of training in order to ensure the dog’s purpose and role is carried at all times. This may include but not limited to: The parents, the child’s staff, the siblings, and of course the child himself will also participate at some point
The bottom line is safety. This canine companion plays an important role along with the use of locks, fences, 911 and tracking devices to keep a child with autism SAFE and HOME. Having this dog is much more than a pet. It is a large sacrifice on the part of the family. The family has already put all the locks, bolts, video monitoring, GPS devices and alarms on their home that they can. The potential for liability far outweighs the cost of the service dog.
For more information: www.autismservicedogsofamerica.com ; www.autismassistancedog.com ; www.4pawsforability.org

Copyright - Advocates For Autism, LLC and Sally J Colletti
By advocatesforautism 30 Jan, 2017
With the increase in adults with autism living in the community in their own home or apartment whether alone with support or with others with support, the development of apps for smart phones and tablets will make the all the difference. Many of those who are now embarking on this huge transition are of the age where using a tablet in school or on a daily basis was not something they were used to. Therefore, apps are not the first thing their parents go to for learning. Some use pictures from magazines or familiar photos taped to a poster board, or the use of white boards on the refrigerator to teach a skill. But a combination of the 'old school' method developed by Linda Hogdon, CCC-SLP in her book Visual Strategies For Improving Communication. as well as apps for mobile devices with support from direct care professionals and parents, an adult with autism will find keeping up with daily household tasks and grooming will be easier to attain.
There are hundreds of apps available and take hours on a limited schedule choosing the right one. Here are the top five for creating independence, with that independence for an adult with autism being defined as learning to manage time, steps in grooming, tasks of daily living for household maintenance, medication management and safety for parents and caregivers to check in. Note, not all of these apps are offered for free.
The first step in learning time management is by being able to judge lapses in time, such as approximating how long it takes to perform the morning routine in order to get to work on time, the time it takes to do dishes or take out the garbage. Everyone knows that when teaching a person with autism a new skill, it starts with relating it to something the love, such as how long do they have to wait for the caregiver to arrive. The method of a Timed Timer was used and implemented in schools througout the country. It is also available on both Google Play-Timed Timer and iTunes Store - Time Timer
Next is the app for basic grooming, but they do have them for the more involved steps in a skill such as shaving. Yet, personal care is so individualized that one app fits all is not possible. Instead, the Personal Success iTunes app can be personalized.
Third, we have the need for household maintenance and chores, such as feeding pets, washing dishes, and making their bed. The idea of a checklist to see what is done or not done is vital. This is very similar to the concept used originally with the 'all done' folder when using the original Visual Strategies as mentioned above. Here, there is My Chore Pad, available in iTunes, or the one on Google Play as Chore Check List seems to be more mature and better suited for an adult.
Of course, medical management with medications and blood sugar checks, as well as reminders are all available on the Touch Streams Solutions app. This is an entire program that requires the purchase of a tablet. Still, it's comprehensive.
Last of the top 5 apps for increasing independence in adults with autism is one that will provide security and peace of mind for caregivers. This is done through the use of passive technology in apps such as Wellness alarm services.
There are resources available for full listings of mobile apps for those with autism at Autism Speaks and on the Friendship Circle.

Copyright - Advocates For Autism, LLC and Sally J Colletti
By advocatesforautism 29 Jan, 2017
Starting in April of 2016, the Social Services law will be amended in NY State to allow for parents of their adult child to be paid under the Consumer Directed Personal Assistance Program (CDPAP) , as long as the parent is not also named as the designated representative. This is a program where the consumer, i.e., the individual with the disability, can hire anyone he or she chooses.

The CDPAP is a statewide Medicaid program that provides an alternative way of receiving home care services, where the consumer has more control over who provides their care and how it is provided. Rather than assigning a home care vendor or agency that controls selection, training, and scheduling of aides, the "consumer" or the family member, friend or guardian directing his/her care performs all these functions usually done by a vendor.

The change was signed into law by Governor Cuomo on November 20, 2015 which amends the Social Services Law §365-f, subd. 3, L. 2015 Ch. 511, enacting Senate bill S05712-A proposed by Senator Simcha Felder. State regulations now prohibit only the spouse or parent from being hired as the CDPAP aide, but allow a son or daughter or any other family member, provided the family member does "...not reside with the consumer or ... who resides with the consumer because the amount of care the consumer requires makes such relative's presence necessary...."

The aide need not be 'certified' as training is done by the consumer and family. However, CDPAP aides may perform skilled care that otherwise only be performed when a person cannot self-administer, such as suctioning tracheotomies, insulin injections, administration of oxygen and medications.

What's all this mean for families? Many parents of developmentally disabled children are stressed to their maximum abilities when they have a child who requires 24/7 care. If there are two parents in the home, they often work opposite hours of one another in order to be sure their disabled child is cared for in their best interest. They do this in place of a group home, as they want their child home with them for as long as possible. After all most are happiest living with their parents. While the parents are very willing to do this for their children many find that by the time their child has reached the age of 21 and they are no longer in a school setting, they are the full-time caregivers for their now adult children. Where there were financial strains prior to the child becoming adult, they now find themselves bankrupt and on assistance programs. At planning meetings, advocates often hear from parents the need to work to support their family, yet they are staying home unpaid in place of a professional caregiver. There just aren't enough caregivers to go around. The solution for several states since 2011 has been to pay the parents; however, the Home and Community Based Medicaid Waiver program in NY has allowed for everyone in the family except the parents to be paid.

Parents will need to call their local Consumer Director Personal Assistance Program (CDPAP) agency for their county. A good place to start is the Department of Health who contracts with the fiscal as the aide is not an employee of a home care agency, but is instead an independent contractor, who is paid wages and benefits by a "fiscal intermediary," an entity that contracts with either the county or a managed care plan to provide services authorized by that county or managed care plan. It is the fiscal intermediary that pays the aide wages and benefits.

"This is wonderful news for families all across New York State. There is no one who understands the complex needs and challenges of a child with a disability better than a parent," said Assemblyman Joe Morelle (D-Irondequoit), who co-sponsored the bill.
Copyright - Advocates For Autism, LLC and Sally J Colletti

By advocatesforautism 29 Jan, 2017
As an employer, other than the obvious contribution to your community, what’s in it for you? The data is in and studies upon studies are proving that a person with ASD is someone who should be your next new employee.
Also, as an employer in NY State, you will get tax credit. What are the advantages of the New York State tax credit WETC? According to the NYS Department of Labor, employers that do business in NY can trim their labor costs through several NY State workforce and economic development programs. Employment-based tax credits save your business money by cutting federal and state liability. You may obtain tax credit savings from $750.00 to $9,000.00 simply by hiring ONE employee with a disability. Call the New York State Labor Department at 1-888-4-NYSDOL or go to the website www.labor.ny.gov .
A person with developmental disabilities can make a great addition to your workforce. They have:
• Motivation
• Dependability
• Flexibility
• Positive Attitude
• Average Job Retention for greater than 2 years is 67%!

Need more reasons? Here’s a few:
1.   Motivation – these employees with always be on time, always report to work – a report of perfect attendance is not uncommon. They will stay at the job until retirement age. They WANT to work!
2. Pre-insured and with job coaches! Many people with autism have consolidated supports and services where a job coach is paid for by their services funding stream and the liability for that job coach is on that funding stream, not on you. The job coach will be there as much or as little as the person with autism needs it. Many with autism are not interested in healthcare benefits, as they have funding in place that will remain for the rest of their lives.
3. Expand Market Share: employees with disabilities can relate better to customers with disabilities, who represent $1 trillion in annual aggregate consumer spending.
Let’s face it, with 1 in every 37 boys in NY State having a diagnosis of autism, you as an employer will be part of the solution!

Copyright - Advocates For Autism, LLC and Sally J Colletti

For more information, read below.
www.labor.ny.gov/businessservices
www.thinkbeyondthelabel.com
www.advocatesforautism.com
www.opwdd.ny.gov
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