Wednesday, October 1, 2014

An App

 Reading this otherwise positive story, a hard-bitten autism parent will hear alarm bells go off at the bolded passage below.  Thought bubble: "Are they going to use this doodad as excuse to cut services?"

An app has changed the way young people with autism and developmental disabilities in Mississippi can communicate and grow.
The app—called TalkingTiles—is being used in the Mississippi Adolescent Center, which is part of the state’s Department of Mental Health. Many of the center’s patients have autism and are nonverbal, Donna Horton, director of client services for the center, said in an interview. The app is a way for the children to communicate what they want without using words, like choosing what to eat for a snack.
They can use the app to develop a range of skillsets from math and reading to learning about colors and how to recognize signs, Horton said.
...

The app operates on Microsoft Dynamics CRM and is a Caretiles application from CoCENTRIX, a company that works to find solutions for the health and human services community.
The tiles surface as different pages in the app, said Bill Keyes, senior vice president of marketing and sales for CoCENTRIX. They could be videos, pictures or words and patients can use them to communicate.
The idea is to engage patients with apps that tie into their specific care plan and let’s them engage in their recovery process, Keyes said. It is also individually designed for different types of patients, he said, in order to cater to their needs. Keyes said it’s comparable to Windows 8, but with tiles.
Mississippi is getting ready to expand the app’s reach statewide and plans to implement it with the Department of Mental Health’s ALS and Alzheimer’s unit later this year. With ALS, Horton said, a person’s ability to speak decreases over time. With the app, there are hopes that more people could use it to help them communicate.
A patient’s progress is also tracked so that a patient’s group of caregivers can see their progress and determine the next step, Keyes said.
Another goal of the app is that states can save money on long-term residential care for patients which can be costly. Patients are also given the chance to become more independent. [emphasis added]
 

In The Autistic Brain, Temple Grandin explains:
Tablets, for example, have a tremendous advantage over plain old computers, even laptops: You don't have to take your eyes off the screen. Usually typing is a two-step process. First you look at the keyboard, then you look at the screen to see what you have typed. That could be one step two many for someone with severe cognitive problems. Before tablets, a therapist would have to mount the keyboard of a desktop computer on a box so that it was right below where the print was appearing on the screen.In tablets, however, the keyboard is actually part of the screen, so eye movement from keyboard to the letter being typed is minimal. Cause and effect have a much clearer  correlation. That difference could well be meaningful in terms of allowing people with extreme sensory problems to tell us what it's like to be them.



Tuesday, September 30, 2014

"Parenthood" and Autism Awareness

Many posts have discussed the role of popular culture in autism awareness. Emily Orley writes at Buzzfeed:
In a series that has depicted teenage pregnancy, abortion, alcoholism, a breast cancer battle, and a young war veteran’s PTSD, one of the most emotional, and painful, scenes to watch on NBC’s critically acclaimed Parenthood came when Max Braverman (Max Burkholder) went on his first unsupervised school field trip in Season 5. A few hours in, he is so tormented by his classmates, he throws a tantrum and has to be picked up by his parents. In the car ride home, after two hours of silence, Max begins to tell them how one of his peers peed in his canteen. “Why do all the other kids hate me?” Max asks. “Is it because I’m weird?” His parents, Kristina (Monica Potter) and Adam (Peter Krause), are speechless, but Max is overwhelmingly honest. It’s a moment that showcases a realistic situation many people on the autism spectrum, like Max, and the families of those people unfortunately deal with regularly.
When Parenthood showrunner Jason Katims started thinking about Season 5, he knew the difficult scene was on the horizon. “I had this instinct that I really wanted to make sure we weren’t sugarcoating the experience of what it would be like for Max. And I was thinking about what would be the next challenge and I thought the next challenge would be Max’s awareness that he was different,” Katims told BuzzFeed News of the character who was diagnosed with Asperger’s in the show’s first season. “I thought that that scene itself was just so wrenching and… Max in particular was so relentless in his performance. He went to a place with it where he was really there and it was just such a beautiful, heartbreaking scene.”
Parenthood, which begins its sixth and final season on Sept. 25, has been telling the poignant story of Max’s battle with autism since the series premiered, detailing his diagnosis and the subsequent issues that both he and the extended Braverman family deal with at the heart of the show as he grows and struggles with his disorder daily. And while a majority of that comes from Katims, who has a child with Asperger’s — though he is clear to note that Max is not directly based on his own son — Burkholder has also made incredible contributions to the show’s portrayal of a child on the autism spectrum. “As a parent who’s gone through this and knowing a lot of parents who have gone through this, I had a wealth of experience and things to draw from as a storyteller,” Katims said. “But Max gave me the confidence to know I didn’t have to shy away from any story.”

Monday, September 29, 2014

Mental Health Services

At Autism Research and Treatment, Johanna K. Lake and colleagues have an article titled "Mental Health Services for Individuals with High Functioning Autism Spectrum Disorder."  The conclusion and recommendations:
Adolescents and adults with HFASD represent a complex and underserved population. Of the studies completed to date, findings suggest that this subgroup of adolescents and adults faces a multitude of psychiatric and psychosocial issues, alongside significant challenges in accessing services. Social skills deficits for individuals with HFASD persist into adulthood, and adults appear to be at heightened risk for developing depression, low self-esteem, and anxiety. Despite this, very few studies have examined treatment patterns and interventions (pharmacological and psychosocial) for adolescents and adults with HFASD. Evidence is beginning to emerge for interventions targeting this population, including CBT, MBT, and SST, but further large-scale studies which compare the effectiveness of, for example, CBT or MBT versus other treatment options (e.g., medication, counseling, etc.) are required and the need for mental health clinicians trained to apply these techniques is now.
In developing interventions for these individuals, programs must consider what adolescents and adults want. For example, adolescents and adults with HFASD may be more interested in interventions targeting vocational opportunities than interventions targeting social skills. Individuals with HFASD and their family members must be viewed as valuable contributors and fully engaged in this process. Further, researchers must look at issues of service cost and efficiency when evaluating the impact of interventions [15].
The large majority of adults and adolescents with HFASD live at home with their families and, of those employed, most obtain jobs in low level, poorly paid, sheltered or supported employment. It is not surprising therefore that the parents of these teens and adults report a number of challenges and concerns related to future independence and availability of appropriate services and supports.

Together, findings point to a number of important practice recommendations. First, developmental disability agencies or agencies supporting individuals with ASD must partner with community mental health agencies to help train, mentor, and build capacity to care for this population across the lifespan. It is important to note that many clinicians working within community mental health agencies already have the skills to effectively deliver this care, but programs either preclude their ability to do so or they lack the confidence to work with this population. Second, there is a critical need for community mental health agencies to review their exclusion criteria to include persons with ASD. For example, agencies providing care for persons with mood or anxiety disorders should not exclude individuals on the basis of a diagnosis of ASD. Community mental health agencies have the resources and expertise in mental health, along with the programs to care for individuals with mental health issues (e.g., vocational programs, counseling, and therapies), but will need guidance from developmental disability agencies to successfully adapt these programs for adults with HFASD. Third, developmental disability agencies must reevaluate their inclusion criteria to include persons with HFASD, regardless of IQ, and across the lifespan. Organizations must work together, combining expertise in ASD from developmental disability agencies with knowledge and resources from community mental health agencies. Fourth, there is a need to study and identify programs and supports that are most effective in both school and community settings. To do this will require a full continuum of mental health services including counseling, vocational support, inpatient services, and outpatient services. It will also require a network of experienced clinicians and community partners. Many of these efforts are already underway in pediatric settings; however, these same efforts are required in adolescent and adult mental health services. Finally, there is a need to prepare and equip older youth with HFASD for the transition to adult services. A number of key recommendations and principles can be gleaned from the broader ID education/vocational literature [114] and from studies of individuals with ID transitioning from the pediatric to the adult medical system [115, 116], many of which could be tailored to persons with HFASD. For example, the use of meaningful transition tools and the importance of transition workers, protocols, and policies [118, 119] are required.

Sunday, September 28, 2014

Emergency Department Use by ASD People

At The Journal of Autism and Developmental Disorders, Dorothea Iannuzzi and colleague have an article titled "Brief Report: Emergency Department Utilization by Individuals with Autism."

To identify medical problems most commonly presenting to emergency departments among individuals with autism as compared to non-autistic persons across age groups. Data was obtained from the 2010 National Emergency Department database and was analyzed by age categories: 3–5, 6–11, 12–15, 16–18 and 19 years and older. Epilepsy emerged as the leading presenting diagnosis among those with Autism spectrum disorder (ASD), ages 16–19 years and 19 over. Psychiatric conditions were primary among ASD individuals aged 12–15 years, accounting for more than 11 % of all visits. In this sample, age-related differences were noted in medical diagnoses among autistic individuals as compared to non-autistic persons
From the article:
The findings of this preliminary study highlight several trends in ED utilization by individuals with ASD by age group. One important finding was that ED use by adults on the autism spectrum is considerably higher than ED utilization by children with a diagnosis of ASD. In addition, a high rate of psychiatric diagnoses and seizure disorders amongst individuals with autism was found as compared to those without autism. This finding supports the previous report of Kalb et al. (2012), and supports the need for further exploration into the psychiatric comorbidities that are most commonly diagnosed in individuals with autism.
...

An issue that merits further evaluation is how many of the individuals presenting with self-injurious or aggressive behavior were evaluated for underlying medical conditions. In many individuals with autism, maladaptive behavior can be an expression of physical pain or discomfort. Making the assumption that maladaptive behavior is purely psychiatric or ‘‘behavioral’’ in nature can result in inappropriate treatment intervention, which could then compromise the quality of care received by individuals with autism during an ED visit. Assumptions and presumptions made by ED clinicians that aberrant behavior is simply due to the autism can result in medical errors and or exacerbation of the presenting disorders. A complete medical work up is essential for individuals in order to rule out an underlying medical condition that could be the cause of the self- injury or aggression. [emphasis added]
Kalb, L. G., Stuart, E., Freedman, B., Zablotsky, B., & Vasa, R. (2012). Psychiatric -related emergency department visits among children with an autism spectrum disorder. Pediatric Emergency Care, 28(12), 1269–1275.

Saturday, September 27, 2014

FAQ: Medicaid, Autism, and ABA

A FAQ from the Center for Medicare and Medicaid Services:
On July 7, 2014, CMCS issued an Informational Bulletin (CIB) (see http://www.medicaid.gov/Federal-Policy-Guidance/Downloads/CIB-07-07-14.pdf ) to provide information on approaches available under Medicaid for providing services to individuals with Autism Spectrum Disorder (ASD). In this CIB, CMS discussed the various authorities under which services to address ASD could be reimbursed including section 1905(a) of the Social Security Act (the Act). Services to address ASD can be covered under three benefit categories: Section 1905(a) (6) Other Licensed Practitioner (OLP), section 1905(a) (13) Preventive Services, and section 1905(a) (11) Therapies.
The informational bulletin also reviewed state obligations under section 1905(a)(4)(B) of the Act, the Early and Periodic Screening, Diagnostic and Treatment (EPSDT) benefit, where states must cover all medically necessary services for children, including services to address ASD.
Q1: Has CMS mandated Applied Behavior Analysis (ABA) services for children under 21 with Autism Spectrum Disorder (ASD)?
A1: No. Applied Behavior Analysis (ABA) is one treatment modality for ASD. CMS is not endorsing or requiring any particular treatment modality for ASD. State Medicaid agencies are responsible for determining what services are medically necessary for eligible individuals. States are expected to adhere to long-standing EPSDT obligations for individuals from birth to age 21, including providing medically necessary services available for the treatment of ASD.
Q2:When will CMS begin to assess state compliance with coverage requirements for children with Autism Spectrum Disorder (ASD)?
A2: There is no specific time frame for CMS review of state practices in this area. The CMCS Informational Bulletin released July 7, 2014 (see http://www.medicaid.gov/Federal-Policy-Guidance/Downloads/CIB-07-07-14.pdf), related to Autism Spectrum Disorder discusses the obligations under the Medicaid statute and regulations that are already in effect. However, CMS recognizes that states may not have focused on the application of these requirements in this area. As a result, a state may need time to review its current program policies to determine if changes are needed to existing state regulations and/or policy to ensure compliance. States may also want to confer with the stakeholder community for public input on the benefit design of autism services for children. CMS believes states should complete this work expeditiously and should not delay or deny provision of medically necessary services. CMS is available to provide technical assistance to states to ensure the availability of services that children may need.
Q3: Do states need to submit a Medicaid state plan amendment (SPA) to offer benefits to individuals with Autism Spectrum Disorder (ASD)?
A3: In order to have services reimbursed under the Federal Medicaid program, a service must meet the definition of a coverable service under section 1905(a) of the Social Security Act. Treatment for ASD is not specifically referenced as a section 1905(a) service. However, some treatment modalities, or components of such treatment modalities, are within the scope of the federal Medicaid program under the following service categories: section 1905(a)(6) Other Licensed Practitioner (OLP), section 1905(a)(13) Preventive Services, and section 1905(a)(11) Therapies :. States may provide services to address ASD under each of these benefit categories. States will need to determine what, if any, steps are needed to implement this policy clarification. In keeping with the role of the Medicaid state plan as a comprehensive written statement of the nature and scope of services available under the state’s Medicaid program, a SPA is strongly encouraged to articulate the state’s menu of services for ASD treatment.
Q4: How should a state that has a section 1915(c) home and community-based services waiver that is limited to EPSDT-age individuals but includes services related to Autism Spectrum Disorder (ASD) that are now available through the state plan respond to this policy clarification?
A4: The ASD-related services should be provided through the Medicaid state plan for the EPSDT-eligible individuals, rather than the 1915(c) waiver. CMS will work with states to ensure that such services are able to be made available under the state plan. Accordingly, CMS with also work with states to remove the service from the 1915(c) home and community-based services waiver at the next amendment or renewal, whichever comes first.
Q5: How should a state that has a section 1915(c) home and community-based services waiver that includes individuals in the EPSDT age group and also individuals beyond their 21st birthday address the Autism Spectrum Disorder (ASD)-related services that are now available through the Medicaid state plan?
A5: The ASD-related services for EPSDT eligible individuals (under age 21) must be provided under the Medicaid state plan and not under the 1915(c) waiver. When the state submits the home and community-based services waiver for renewal or amendment, the state should include a restriction under the ‘limits’ section for that specific service indicating that EPSDT-aged individuals are excluded as the services are fully covered in the state plan. ASD-related services for individuals over age 21 may continue to be provided under the 1915(c) waiver.

Hollywood and Vaccine Refusal

Gary Baum reports at The Hollywood Reporter:
Whether it’s measles or pertussis, the local children statistically at the greatest risk for infection aren’t, as one might imagine, the least privileged — far from it. An examination by The Hollywood Reporter of immunization records submitted to the state by educational facilities suggests that wealthy Westside kids — particularly those attending exclusive, entertainment-industry-favored child care centers, preschools and kindergartens — are far more likely to get sick (and potentially infect their siblings and playmates) than other kids in L.A. The reason is at once painfully simple and utterly complex: More parents in this demographic are choosing not to vaccinate their children as medical experts advise. They express their noncompliance by submitting a form known as a personal belief exemption (PBE) instead of paperwork documenting a completed shot schedule.

The number of PBEs being filed is scary. The region stretching from Malibu south to Marina del Rey and inland as far as La Cienega Boulevard (and including Santa Monica, Pacific Palisades, Brentwood, West Hollywood and Beverly Hills) averaged a 9.1 percent PBE level among preschoolers for the 2013-14 school year — a 26 percent jump from two years earlier. By comparison, L.A. County at large measured 2.2 percent in that period. Many preschools in this area spiked far higher, including Kabbalah Children’s Academy in Beverly Hills (57 percent) and the Waldorf Early Childhood Center in Santa Monica (68 percent). According to World Health Organization data, such numbers are in line with immunization rates in developing countries like Chad and South Sudan. These two schools aren’t outliers; dozens more — including Seven Arrows, Turning Point and Calvary Christian — report PBE levels that are five times the county average. And THR has found that administrators at many of these facilities are hardly alarmed.
...

According to more than a dozen area pediatricians and infectious disease specialists THR spoke to, most vaccine-wary parents have abandoned autism concerns for a diffuse constellation of unproven anxieties, from allergies and asthma to eczema and seizures. “If I talk to most of my patients, who are very savvy by the way, they will say they know someone directly or indirectly who felt that their child has not been the same since the vaccine,” says Dr. Lauren Feder, whose pediatrics practice, popular with those leery of immunizations, is based just south of L.A.’s Miracle Mile.
 

Friday, September 26, 2014

Two More Risk Factors: Low Iron and Pregnancy Timing

In light of ongoing news coverage of various potential causes and risk factors, it is very tempting to disregard the "everything causes autism" genre. 

A release from the UC Davis MIND Institute:
Mothers of children with autism are significantly less likely to report taking iron supplements before and during their pregnancies than the mothers of children who are developing normally, a study by researchers with the UC Davis MIND Institute has found.

Low iron intake was associated with a five-fold greater risk of autism in the child if the mother was 35 or older at the time of the child's birth or if she suffered from metabolic conditions such as obesity hypertension or diabetes.

The research is the first to examine the relationship between maternal iron intake and having a child with autism spectrum disorder, the authors said. The study, "Maternal intake of supplemental iron and risk for autism spectrum disorders," is published online today in the American Journal of Epidemiology.
From PsychCentral:
New research suggests the spacing of pregnancies may play a factor in the development of autism spectrum disorder (ASD).
Investigators discovered children who were conceived either less than one year or more than five years after the birth of their prior sibling were more likely to be diagnosed with autism than children conceived following an interval of two to five years.
The research is published in the Journal of the American Academy of Child and Adolescent Psychiatry.