"Real" Person-Centered Planning

  • By advocatesforautism
  • 01 Oct, 2017

"Nothing About Us Without Us"

If you really want to empathize and serve those with disabilities, you need to be respectful of the language used when referring to them. Actually, don’t “refer” to "them" at all. That means, no workshops on how best to “serve” them, no workshops on how best to “emphathize with them” and no third-person references.  And certainly not through Empathy Mapping, which has been found to be MORE harmful to those with disabilities than it has been proven to be helpful.   This Empathy Mapping technique has been taught in social work schools for decades and needs to stop. Do you really know what it is like to have a developmental disability?   Here’s a new concept…invite someone who has self-identified their developmental disability (known as a self-advocate) to be at the workshop, meeting, or the planning session.

There is nothing more condescending, patronizing and downright offensive than to see a group a people sitting around a paper chart with colored markers working in groups saying how they are going to “Help” those with disabilities and those who receive Medicaid.  Just stop now. Instead, learn how to do person-centered planning.   Real person-centered planning. That’s the true meaning of “Nothing About Us Without Us”. Don’t hold a meeting discussing developmental disabilities at anytime, anywhere or anyplace without" us" in the room. If it’s not a self-advocate, then a parent who’s child has given them the right to speak on their behalf can stand in.  Contact us, we'll show you how.  It's not hard and doesn't even have to include a colored marker, though the illustration above by Dr.  Beth Mount, is brilliant and her work is outstanding as is John and Connie O'Brien's. 

Do yourself a favor…look in the mirror….you’re not the change agent you think you are if you are doing this out-of-date, offensive technique.

The Spectrum by Advocates For Autism, LLC

By advocatesforautism 12 Oct, 2017
Senator Fred Akshar  www.nysenate.gov/senators/fred-akshar  supports the initiative created by Marc Molinaro,  County Executive of Dutchess County called ThinkDIFFERENTLY.  The brain child of Molinaro, a Red Hook Resident was based on life with his daughter Julie, now almost 14.  This has been rolled out across all 62 counties in NY State and now soon to include Broome County on November 1st.  Advocates for Autism will be there as well.  “Our ‘Think DIFFERENTLY’ philosophy can be adapted in myriad ways, depending on a community’s distinct composition. Every municipality is different, and each has the opportunity to implement the ‘Think DIFFERENTLY’ initiative based upon what works best for them,” County Executive Molinaro said. “We in Dutchess County fund several projects to improve accessibility for residents, but there are countless opportunities to ‘Think DIFFERENTLY’ that require no funding at all – just a willingness to embrace a different way of thinking and put that into action. At its core, ‘Think DIFFERENTLY’ is about changing the way many of us think about and relate to residents with special needs and finding the innate potential inside us all. It’s a philosophy I’m happy to see spread throughout New York, and I encourage other communities to consider our initiative for adoption. Every individual of every ability deserves support, acceptance and respect and we start by asking all of us to 'Think DIFFERENTLY.’

This philosophy is no stranger to Advocates For Autism or those living in the Southern Tier, as we have already successfully collaborated (with Autism Society of America) and AMC Theaters (shout out to manager Heather)to provide sensory friendly films, as  well as trained all first responders across 7 counties with funds sponsored by the late Senator Tom Libous.  We have brought world-renowned speakers to the area to train the teachers and professionals and parents, but also the store owners, the neighbors.  This is what this initiative is about.  Learn who your neighbor is.  There is a good chance that it is a child or adult with autism. 

This region is rich with fun places to go with your child with autism and here's just a few:

If a place can make a child with autism no matter the ability, the level of need or the interests, feel welcome then they have made the top 5 list. Look for more top 5’s in the future as we explore more places!  How places were chosen: It’s not about where there is do or how much it costs – it’s about acceptance.  
1.   Broome County Parks: Still the best deal for prices, parking, accessibility, maintenance and best of all swimming! The playgrounds are big and fun to explore with parent-friendly areas to sit and watch or play along!
A description of the parks from the Go Broome County website: Broome County Parks and Recreation is a regionally based parks and recreation system serving a population of over 200,000 people. This park system consists of: Nathaniel Cole (317 acres) on County Route 63 in the Town of Colesville; Dorchester (1142 acres) in the Town of Triangle; Finch Hollow in the Town of Maine (12 acres); Greenwood (415 acres) on County Route 320 in the Town of Nanticoke; Grippen and Roundtop (46 acres) in the Village of Endicott; Hawkins Pond (307 acres) in the Town of Windsor; and Otsiningo (150 acres) in the Town of Dickinson. This system includes an eighteen hole golf course, three beaches, a campground, a performing arts theater, a 7200-seat arena - with professional AHL Hockey, cross-country skiing, swimming, boating, professional hockey, and many other leisure activities. Annually, two million people use this system.  Of course, there's My Space Adaptive Playland at Rec Park too.
2.  The Discovery Center – by far, hands down, old-fashioned fun! www.discoverycenter.org
A description of the Discovery Center is said best by those who created the organization: “The Discovery Center, located in Ross Park next to the Binghamton Zoo, has 30 play and learn exhibits that children can dig, drive, fly, shop, hop, perform and paint their way through. Soaring above the clouds in our A-10 cockpit, groovin’ in our Recollections III exhibit, shopping smart, directing an emergency call, dining out international-style, and sampling simple science are, perhaps the first steps in preparing a child to succeed in a changing society. The Story Garden, our outdoor exhibit space, and a signature project of the Junior League of Binghamton, was dedicated in 2007. The Story Garden seeks to spark the imagination of visitors through interactive experiences with images from favorite children’s books in an outdoor setting. The award-winning Story Garden promotes an appreciation for gardens, the environment, and, of course, having fun outside!”
The Discovery Center phenomenal and there is no place like it in all the places our family has travelled. This is where the imagination can be sparked and if you are looking to teach your child those imagination skills like pretending and role playing, what better a place to do it in than one that has a real fire truck, a real television studio and a telephone pole to climb!
3. Broome County Libraryhttp://www.bclibrary.info/ Never once have I heard a complaint or witnessed a child with autism being “shhhed” in the children’s area. The staff is very helpful and understanding. They have great displays of art by local artists and will do an art display during Autism Awareness Month featuring artists with autism. They have a room off to the side for children’s books and a great sensory friendly place to relax and read a book.
4.   The Boys and Girls Club of Binghamton. www.boysandgirlsclubsbinghamton.org This truly is a place where everyone feels welcome. With stats like these: 5 -9 years: 1,446, 10-14 years: 1,278, 15-18: 490 / Race Caucasian: 43%, African-American: 38%, Asian, Hispanic, other: 19% / Household Income Below $5,000: 23%, $5,000-$9,999: 35% $10,000-$14,999: 21% $15,000-$19,999: 10% , Above $20,000: 11%. Every program the club offers or is involved in makes a child with ASD feel welcome.
5. Midway Bowling Lanes in Vestal, NY: www.midwaylanes1.com
This is family fun atmosphere that hosts bowling leagues and bowlers from age 2 to 102! Seniors down to preschoolers come back for more. More often than not there will be a group of kids with ASD playing a game or two and feeling, even if just for an hour, that they are just like everyone else. There's never a worry with your kids playing here. They have other arcade games and are well known for fun birthday parties and you don’t have to plan around the weather.
6. The Integrated Activity Center - www.southerntierspecialneeds.com   This is the place to go for sensory integration.  Created by Dr. Teresa Schrader with sensory integration disorder in mind.  She wanted a place where not only could a child or adult on the spectrum go and enjoy themselves, but she wanted to make a welcoming space too.  She succeeded!  

By advocatesforautism 07 Oct, 2017

REPRINT FROM SEPTEMBER 2011:  Please note:     All questions are asked by a Binghamton University (SUNY)  Nurse Practitioner Student 

NP Student: What are your perceptions about autism, In terms of how it originated in children?

Sally:   It is believed to be a neurobiological disorder, that is, that there is a variety of reasons for the onset. Either there is autism that appeared from birth on and when a family looks back they can usually see it in videos of their child and then perhaps the environment triggered it to a more severe form or there is the regressive type of autism where the child was talking and developing normally and then suddenly halted and began to regress.   Generally, our belief is that there is something genetic being triggered by an environmental toxin.


NP Student: How can health care providers be more open and welcoming to these children and their family?

Sally : By learning the peculiarities - for instance, my son would shriek, kick and scream and fight whenever we pulled into the parking lot for the doctor's office. He had experienced many ear infections and not great experiences. He would scream the entire time. I would try to tell the doctors back when my son was only 9 months old, even back in 1993, that my son had autism. That this was not normal. So doctors and practitioners need to listen to the parent. If the child is a difficult patient, then perhaps schedule the visit for a time when the office is less busy. Absolutely no waiting can be tolerated. This is the worst thing to do for a patient with autism. Listen and be tolerant of the parent's requests. If you suspect autism, also test for immune system and GI tract disorders.

NP Student: How can we make them feel safe during check-ups in our clinic?

Sally:   By knowing that after you do something, for example a weight, height and then temperature - you need to do that every time and in that order. The child with autism has an extremely good memory and needs to have these done in the same order. The mother needs to know that you are trusting her instincts. The child needs to know that you are serious about medicine - meaning if you want to check the ears, then get down to business and don't use a lot of words and don't spend a lot of time trying to talk them "into it". Just say "I'm going to look in your ears with this light" and then do it. A child with ASD needs to know the exact names of things. My son knew that it was called an otoscope and that they were eustachian tubes, but he needed to be respected for his knowledge and so did the mother who spent a lot of time trying to learn all she can about her child.

NP Student: What resources would you recommend to these parents who need answers?

Sally:   There are two really great resources - one is the Autism Research Institute and the other is of course, this website.   There's now almost too much information out there and so by writing these articles and posting information, I can help point the parent or teacher where they need to go so they don't waste precious time or get overwhelmed.

NP Student: How do you differentiate between delayed development and/or behavioral problems and Autism?

Sally : Delayed development is just that... delayed but the key is that even though it's delayed, it's EVENLY delayed. With autism, there is uneven development. For example, my son (again as an example) could sit up and feed himself a Zwieback cracker/toast but never rolled over. He could tell you the word "off" when you turned off a light at the age of 10 months, but couldn't mimic you when you kissed or something like that.

NP Student: Are there any tools or diagnostic tests that aid in diagnosing Autism that will help providers with early diagnosis?

Sally:   The CARS - Child Autism Rating Scale - Has a version that's quick for docs to do as a prescreen when the child is 18 months and then there's the ADOS Autism Diagnosis Observation Scale.

NP Student: What is the next step after diagnosis for the A) family B) child and C) health care provider?

Sally: A.     To grieve a bit and let the feelings and emotions be there and be real. Don't deny them. Make the anger work for you by finding the way to reach your child. You need to act fast, but not overnight. It's a process. Connect with other parents. Call your school district if the child is over 3 and your health department if they are under 3 to get services going.

Sally: B. The child needs to still be as accepted as the child you had the hour before you found out. In other words, it's still the same child that was there all along. Disclosure and framing of autism in a positive way to your child is essential. Don't be caught down the road when they are older trying to explain autism to them. Be honest at the beginning.

Sally: C. Be there with resources that are listed on this website, Examiner.   Don't discount or make light of the disorder. Connect them with other families and respect whatever therapy or treatment they would like to seek out. If you don't provide that treatment, then refer them to someone who does. As long as it is not a harmful, invasive form of treatment, all forms of therapy and treatment should be considered. It's an individualized disorder. No two children are alike and so no two children with autism are alike.

By advocatesforautism 07 Oct, 2017


What's unfolded over the past few days will impact children, parents, and individuals diagnosed with autism quite possibly harder than the first day the words "Your child has autism" ever could. The effects are already being seen in the homes, schools and now the community as the first age group with autism graduates. It is said that each person with autism will need over 3.1 million dollars in a lifetime to live with adequate support and care.

This week it was announced that the CDC may have altered studies claiming there is no link between autism and MMR vaccines.   Thanks to a whistleblower who came forward this week with his identity - William Thompson, PhD. Dr. Williams has first-hand knowledge of the alleged cover-up.

From the Autism Action Network's John Gilmore, "For those of you who haven’t heard the news, William  Thompson, Ph. D., a senior research scientist at the Centers for Disease Control and Prevention (CDC) has provided information to several sources alleging that he and his colleagues, who are all senior people at the CDC, altered a 2004 study to cover-up the finding that African-American male toddlers who received the Measles Mumps Rubella (MMR) shot under the age of 36 months had 340% more autism than those who got the MMR older than 36 months. The alteration to the study was allegedly done to hide the relationship between the MMR and autism.  Even after the alleged deception, the study still showed that children who received the MMR at a younger age had a higher autism rate than those who received it later in life. Yet the study was marketed as showing no affect. "

A connection may not yet be made by some of the parents who are 'new to the autism scene', to all of these findings, studies and even the reason behind why some non-profits were formed to begin with. Autism is a complex disorder that should be considered neurobiological, not mental, in its origin. These 'newly diagnosed' parents too will read and be sickened, angered and then hopefully will go into action and join the parents who have been saying all along, "This is real and we need to be heard".

It seems autism may even trump race. The rate increase in autism is so high in this country that even the rate increase in this covered-up study is not the highest increased rate.   It's an issue that goes across all races, religion, nationalities and economic lines. When you have an increased rate dating back as far as 1995 showing an approximate increase of at least 900% in the rate of autism diagnoses in children aged 8 and up, it was only a matter of time before these rates would be illustrated throughout the country...and the world.   But know this - these studies of the rates were published by the CDC itself and there are alleged cover-ups from the start of these autism rate studies.   So now, there's a cover-up of an even higher rate? It's damage that can't be undone.

The next few days and weeks will hopefully unfold the next chapter in this long, unnecessary journey that parents of children with autism must travel. Stay tuned...

By advocatesforautism 01 Oct, 2017

If you really want to empathize and serve those with disabilities, you need to be respectful of the language used when referring to them. Actually, don’t “refer” to "them" at all. That means, no workshops on how best to “serve” them, no workshops on how best to “emphathize with them” and no third-person references.  And certainly not through Empathy Mapping, which has been found to be MORE harmful to those with disabilities than it has been proven to be helpful.   This Empathy Mapping technique has been taught in social work schools for decades and needs to stop. Do you really know what it is like to have a developmental disability?   Here’s a new concept…invite someone who has self-identified their developmental disability (known as a self-advocate) to be at the workshop, meeting, or the planning session.

There is nothing more condescending, patronizing and downright offensive than to see a group a people sitting around a paper chart with colored markers working in groups saying how they are going to “Help” those with disabilities and those who receive Medicaid.  Just stop now. Instead, learn how to do person-centered planning.   Real person-centered planning. That’s the true meaning of “Nothing About Us Without Us”. Don’t hold a meeting discussing developmental disabilities at anytime, anywhere or anyplace without" us" in the room. If it’s not a self-advocate, then a parent who’s child has given them the right to speak on their behalf can stand in.  Contact us, we'll show you how.  It's not hard and doesn't even have to include a colored marker, though the illustration above by Dr.  Beth Mount, is brilliant and her work is outstanding as is John and Connie O'Brien's. 

Do yourself a favor…look in the mirror….you’re not the change agent you think you are if you are doing this out-of-date, offensive technique.

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

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