What the New Affordable Care Act Provisions Mean For Those With Autism and Related Conditions

The Affordable Care Act, according to the US Department of Health and Human Services, contains crucial health care changes to those with autism or related conditions as well as their families. It's important that we spread the know, so that those affected can understand what these provisions are. The goal of this nationwide effort is to cut healthcare costs and help those without care obtain it.

These health care reforms matter for those affected with autism spectrum disorders because they will face more serious coverage and benefit gaps than others. A lot of families affected by autism spectrum and other related conditions do not get the healthcare they need, and this effort can change that. Or, as critics say, it could possibly only add to the convoluted nature of the healthcare system and its inconsistency among the states.

Some Provisions affecting those with autism/related issues under Affordable Care:

• No child under the age of 19 can be denied coverage by job-based or new individual health insurance plans due to preexisting conditions, including children on the autism spectrum. In 2014 these protections will extend to Americans of all ages.
• Health insurance policies must cover all preventative care expenses: shots, check-ups, immunizations etc.. There is no shared-cost (ie: copay, deductables ect). This includes autism screenings for children between 18 and 24 months (as recommended by the American Academy of Pediatrics). 
• Insurance companies can no longer cap, or set a dollar limit on coverage. Before the ACA, companies held the right to put a limit on the amount of offered coverage, leaving those who exceed this limit to pay out-of-pocket costs. Starting in 2014, no policy can place its own cap. 
• Young adults can now remain on their parents' plan until the age of 26, including those affected by autism/related disorders. For many, this offers peace of mind, as the economy is different and taking on your own health care plan can be difficult without a solid career. 
• Starting in 2014 there will be an expansion of marketplaces for families affected with spectrum disorder to find affordable healthcare
• Starting in 2014, new plans sold in the individual and small group markets will cover "essential health benefits" to make sure that insurance is comprehensive and fully cover realistic needs
• Instead of creating a national standard for autism coverage, a state-level standard will be implemented across America. (Spivey 1). 

Coverage for Autism Treatments

Before ACA, insurers across the country have come up with several mandates on how to manage or guide insurance standards for those with autism. Until now, "essential benefits", or the standard, if you will, has been a matter of statehouse politics. Legislators have created over 16,000 laws regarding health coverage standards for autism. Some state legislators require the coverage of behavioral therapy and other services for autism, but some do not. 

The process of gaining a country-wide requirement by all healthcare policies for coverage of behavioral treatment won't be instant, but it's already in the making. Thus far, 24 states, including Washington D.C., will require insurance carriers that sell policies on their insurance exchange to cover behavioral health treatments as well as preventative care such as behavioral analysis. This includes the following states: Arizona, Arkansas, California, Connecticut, Delaware, Indiana, Illinois, Kentucky, Louisiana, Maine, Massachusetts, Michigan, Missouri, Montana, Nevada, New Jersey, New Hampshire, New York, Ohio, Texas, Vermont, West Virginia, and Wisconsin. Though coverage or implementation may be different from state to state (Spivey 2).

For more information on how the Affordable Care Act will affect coverage for you and your family, or if you have questions regarding the new Health Insurance Marketplaces, or you'd like to know how this new coverage will be implemented in your state, visit http://www.healthcare.gov or call their hotline at 1-800-316-2596. Autism Speaks and the Autism Health Insurance Project are always updating their website with vital information and FAQs regarding the Affordable Care Act and how it may or will affect the autism community (Spivey 2). 

Whether this healthcare reform will truly help our whole nation is still a question to be answered, but at least the ACA is committing to better the system for those affected by autism spectrum. It's important we know what lies in the future, and although our healthcare system can seem convoluted and carelessly executed at times, change is a step in some direction and it's a wildly popular idea that change is necessary. Know the facts, understand the provisions, and fight for what you need.

P.R.O.M.P.T. Therapy: Who, What, & Why?

PROMPT stands for Prompts for Restructuring Oral-Muscular Phonetic Targets. The technique utilizes tactile-kinesthetic (a fancy word for "learning through doing") articulatory cues on one's jaw, face, and under the chin to develop OR restructure speech production.
Many therapists at Suffolk Center for Speech are trained in PROMPT therapy, versed in manually guiding children in articulating specific sounds or words. PROMPT, for many children, can be boring and unengaging. But we know how to make it fun. Our therapeutic platform for children is heavily focused on motivating and rewarding. Many parents of patients tell us their children "can't wait for speech."

During PROMPT, a clinician will use their hands to cue and stimulate articulatory movement in the patient's mouth area, and simultaneously, discourage unnecassary movements to eliminate them. This type of therapy addresses cognitive, social, pragmatic, behavioral, sensory motor and physical domains. Each individual is evaluated for his/her strengths and weaknesses. Strengths are utilized to improve the clients communication skills with a focus on dimishing weaknesses. PROMPT therapy may be different for individual patients in terms of how a clinican helps the patient improve motor control, cognitive skills, and social interactions. At Suffolk Center for Speech, our main objective in PROMPT therapy is to improve functional, interactive, and verbal communication of young ones. PROMPT therapy is not for everybody.

Who Can Benefit?

Children and adults who suffer from Apraxia of Speech, Developmental Delays, Dysarthria, Phonological Disorders, Autism Spectrum Disorders, and Hearing Impairments can all benefit from PROMPT therapy.



What Does A PROMPT Session With A Child Involve?

A therapist will initially evaluate a child's degree of focus during the communication process. If a child is having difficulty paying attention to the therapist, maintaining eye contact, and/or generally focusing, a therapist will implement strategies to help the child "be present". The therapist may attempt to slow down the child's rate of speech, and prompt the child to use vowel sounds. Once the child begins to imitate or initiate vowel sounds for the purpose of communication, Parameter PROMPTS (processes that facilitate jaw/facial control and a degree of articulatory movements) are provided. These will shape speech production for a child in need. It won't happen overnight, but PROMPT is an extremely effective approach to teaching a child to proper communication skills(physically and verbally). Therapy structure will shift from focus and attention to functional speech exercises.
 

Can Parents Carryover PROMPT Therapy Goals At Home? 

They sure can. In fact, parental involvement is critical to the success of PROMPT therapy. Parents are NOT encouraged to attempt to imitate PROMPT training. PROMPT therapy is a specialty that requires in-depth training, and incorrect emulation can interfere with PROMPT therapy goals. Parents are encouraged to talk with their children about what he/she did during therapy: to ask them questions about it. This will help the child remember what he/she has learned during therapy (how to articulate certain sounds or vowels, or how not to). Parents are also encouraged to read stories that contains words that force out the articulators the child is finding difficulty with in a fun and engaging environment (particular to the child). If the child is still pronouncing sounds wrongly, inform them subtly. Make it fun for the child to learn correct pronunciations by playing games that include well rehearsed words or phrases. A fun and natural environment is important for the child to rehearse pronunciation; otherwise, they may not bring what they've learned at Speech Therapy home or to school. It's extremely important that parents acquire a solid rapport with their child's speech-language pathologist, so that strengths and weaknesses can be discussed as well as ways to foster successful therapy (homework, if you will). A skilled therapist will give ideas to a parent regarding situations and scenarios where a child may experience most effective practice.
 

PROMPT Trained and PROMPT Certified:
What's the Difference? 

A PROMPT-trained therapist is allowed to practice PROMPT therapy on patients in need, and are completely qualified as well. The only difference between a PROMPT-trained therapist and a PROMPT-certified therapist is a video project, which is extremely costly to the therapist. Other than that, there is no difference.

Autism: Do You Know the Truth?

Let's talk about autism. It's time that somebody debunks all those myths and preconceived ideas regarding autism that mass media has implemented (Mercury Rising, What's Eating Gilbert Grape, etc.). A lot of us are uneducated on the truths behind this complex disorder, and given its prevalence, I think it deserves some clarification. Don't you? If you have a child with autism, than you're well aware of how complicated diagnostics can be and that there is a broad spectrum of comorbid symptoms that children with autism experience. There's so much unknown about the disorder, primarily because it's difficult for children with autism to express their thoughts or emotions in terminology others will comprehend. Fully understanding autism is a work in progress.

Let me digress for a moment and tell you about my first encounter with the word "autism". Every New Years Eve, my immediately family and I drive out to the Port Jefferson area to visit my father's side of the family. My cousin Tammy owns this beautiful home by the water. We usually meet at some fancy restaurant for dinner and then move on to Tammy's house to eat a plethora of delicious desserts and watch football until we pass out.

Every year, my father drives the same route. I remember when Tammy first bought the house, we were so excited to see it. We drove through her neighborhood and passed this little house with the most outlandish lawn I've ever seen. There was barely any visible grass: mostly sand. Every adjacent house had perfectly mowed lawns and long curvy driveways. This house, on the other hand, was an eye sore (according to local residents, at least). The entire lawn was riddled with giant plastic statues of one-eyed Pirates with fake swords and fake green parrots clawing their shoulders. It looked like all where in the midst of bloody battle by sword. My father slowly drove past so we could gander and ponder what in the world that homeowner was thinking. It clearly drove down the costs of neighboring houses, being the residential "blemish" it was. I thought it was cool.

Finally, we asked Tammy. Why the pirates? Turns out, the homeowners had an only child with autism. He hadn't spoken a word his whole life; that is, until the day they brought him to the Pirates of the Caribbean display at Disney World. He absolutely LOVED the setup, and it was the first time his parents ever heard him speak. Unfortunately, after they left, the child became nonverbal again. So, praying it could encourage their child to speak again, they devoted their lawn to a Pirates of the Caribbean theme. Now that's a tear jerker. Neighbors, even aware of the circumstances, petitioned to have the family remove the display they most likely spent thousands on. This was about a decade ago. It's still there.

That was the first time I had ever heard about autism. When I went to school at SUNY Buffalo, I learned a lot about autism as a Psychology major. I'm dedicating this post to that autistic child who would much rather be a pirate. This if for you.

Autism: Myth VS Reality

Myth: All children with autism are nonverbal, will never talk, or could talk if they wanted to.

Reality: A lot of children do actually improve their verbal skills through speech therapy. But talking is really only one way of communicating. At an early age, children with autism can learn to compensate their trouble with spoken word by using other forms of communication to express themselves, such as sign language, computers, alternative/augmentative communication devices, etc.

Myth: All children with autism have mental retardation.

Reality: Some children with autism may have some degree of mental retardation, but according to the Diagnostic and Statistical Manual of Mental Disorders, mental retardation is characterized "by significantly subaverage intellectual functioning (IQ of about 70 or below). Diagnostic criteria for autism, on the other hand, lists 6 or more items in impairment, including difficulty in speech, social interaction, and lack of emotion. There is no specific reference to IQ in the diagnostic criteria for autism, so to think that all individuals with autism have mental retardation is a misled generalization.

Myth: All children with autism are "geniuses," have a gift or talent, or are intelligent.

Reality: This is a myth that mass media has definitely perpetuated. Mercury Rising is one of my favorite movies, but it definitely perpetuates this false myth. In reality, all children with autism have their strengths and weaknesses. But, not ALL children with autism have a special gift. But, some do, which is pretty incredible: an anomaly of nature to truly be dwelled on and studied if you ask me.

Myth: Autistic children cannot learn.

Reality: Children with autism experience a much different learning process than individuals without. Some are visual learners, others learn through listening, and some through physical performance. This myth isn't true. Children with autism, when given an appropriate teaching style adherent to their learning process, can easily learn.

Myth: Children with autism cannot make eye contact.

Reality: Actually, many children with autism do make eye contact. It may me less frequent and more a visual gesture than a way of communicating.

Myth: Children who often demonstrate disruptive behaviors, like throwing temper tantrums, hitting, and destroying things, most likely have autism.

Reality: These symptoms are more tied to an antisocial personality disorder than autism. These criteria alone cannot bring a professional even close to diagnosing a child with autism.

Myth: Children will "outgrow" autism.

Reality: Unfortunately, this myth is far from the truth. Autism is not something an individual can simply outgrow. But, an individual, especially one who engages in early treatment, can progress, diminish symptoms, and improve their overeall ability to lead a normal life and follow a daily routine.

Myth: Children with autism cannot show affection.

Reality: Children with autism don't always show affection the way children without autism do. But, many can show affection; it's up to their caregiver to understand the ways in which their autistic child displays these acts of affection.

Myth: All children with autism have sensory issues.

Reality: Many children with autism DO have sensory issues, but it is not alone a criteria to diagnose autism. Several children without autism have sensory issues as well.

Myth: Autism can be cured with special diets.

Reality: There is no conclusive data supporting this hypothesis. However, many professionals and parents who place children with autism on special diets (ie. gluten free) claim to have seen significant progress.

I hope this clears up some of the misconceptions about autism. God bless all the parents and caregivers out there who devote their lives to caring for, loving and guiding children with autism, down syndrome, cerebral paulsy, etc. Love and praise from Suffolk Center for Speech.

Written by: Tim Strampfer

Myths and Realities taken from Super Duper Handy Handouts article:

Autism: It May Not Be What You Think