"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.”

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.

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."

The abstract:

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.

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.

 

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.

Due Process

The Government Accountability Office has a new report, "Special Education: Improved Performance Measures Could Enhance Oversight of Dispute Resolution." The executive summary:

From 2004 through 2012, the number of due process hearings—a formal dispute resolution method and a key indicator of serious disputes between parents and school districts under the Individuals with Disabilities Education Act (IDEA)— substantially decreased nationwide as a result of steep declines in New York, Puerto Rico, and the District of Columbia. Officials in these locations largely attributed these declines to greater use of mediation and resolution meetings—methods that IDEA requires states to implement. Despite the declines, officials in these locations said that higher rates of hearings persisted because of disputes over private school placements or special education services. GAO did not find noteworthy trends in the use of other IDEA dispute resolution methods, including state complaints, mediation, and resolution meetings. States and territories reported on GAO’s survey that they used mediation, resolution meetings, and other methods they voluntarily implemented to facilitate early resolution of disputes and to avoid potentially adversarial due process hearings.

States, territories, and other stakeholders generally reported on GAO’s survey or in interviews that alternative methods are important to resolving disputes earlier. Some stakeholders cited the potential of these methods to improve communication and trust between parents and educators. Some state officials said that a lack of public awareness about the methods they have voluntarily implemented was a challenge to expanding their use, but they were addressing this with various kinds of outreach, such as disseminating information through parent organizations.

The Department of Education (Education) uses several measures to assess states’ performance on dispute resolution but lacks complete information on timeliness and comparable data on parental involvement. Education requires all states to report the number of due process hearing decisions that were made within 45 days or were extended; however, it does not direct states to report the total amount of time that extensions add to due process hearing decisions. Similarly, Education collects data from states on parental involvement—a key to dispute prevention—but does not require consistent collection and reporting, so the data are not comparable nationwide. Leading performance measurement practices state that successful performance measures should be clearly stated and provide unambiguous information. Without more transparent timeliness data and comparable parental involvement data, Education cannot effectively target its oversight of states’ dispute resolution activities.

A previous post noted that the Bloomberg administration beefed up its special-education legal team to defeat parents seeking private placements for their kids.  Perhaps the decline in New York reflects hardball legal tactics that discourage parents from going to due process.

Autistic Adults: Health Care and Employment

Dr. Christopher Hanks writes at LiveScience:

Once patients move away from their pediatricians, they struggle. These patients often miss out on important check-ups, immunizations and cancer screenings. It's also important to note that without specialized care, these individuals can have a hard time transitioning into an intimidating world.

Many teens with ASD struggle to obtain meaningful vocational or educational opportunities after they've finished high school, which provides a structured environment and allows for social interactions and continual development. Unless these young adults are employed or enrolled in an educational program, most spend too much time alone or isolated, with little or no social interaction. When this happens, they often regress and lose some of the skills they previously developed.

These patients deserve physicians who understand their needs and will work with them to overcome the challenges associated with becoming an adult who has an illness that will impact their entire life.

That's what we're striving to do at The Ohio State University Wexner Medical Center, where we recently opened one of the only clinics in the country to care for adults with ASD. Here at the Center for Autism Services and Transition (CAST), we provide care coordination, along with primary and specialty care services for patients. We offer access to diagnostic testing, counseling services, therapy, dental care, nutrition and other resources. Our goal is to give new hope to these patients, and to connect them with medical experts who truly understand their needs so they can continue to grow and succeed.

A release from the Labor Department:

The U.S. Department of Labor has announced the establishment of a National Advisory Committee on Increasing Competitive Integrated Employment for Individuals with Disabilities. The purpose of the committee is to study and provide recommendations to the secretary of labor on ways to increase employment opportunities for individuals with disabilities, the use of the certificate program carried out under Section 14(c) of the Fair Labor Standards Act of 1938 (29 U.S.C. 214(c)) and ways to improve oversight of the use of such certificates.

...
The creation of the committee is mandated by the recent passage of the Workforce Innovation and Opportunity Act, signed July 22. WIOA strengthens the public workforce system and the partnerships that sustain it by unifying and streamlining services to better serve job seekers. It will improve accountability and transparency within the system. WIOA also builds closer ties among key workforce partners: business leaders, workforce boards, labor unions, community colleges, nonprofits, and state and local officials. And it addresses the needs of veterans, the long-term unemployed, individuals with disabilities and of other populations facing unique economic challenges.

Autism in a North Carolina Senate Ad

In North Carolina, a group supporting Senate candidate Thom Tillis is highlighting autism:

 

At WRAL in Raleigh, Mark Binker reports:

One thing that's not mentioned amid the images of a cute and happy child, soaring music and b-roll cribbed from Tillis' campaign website: The bill in question never passed.

Early on, Tillis made autism coverage a signature issue in his U.S. Senate campaign, wearing an Autism Speaks pin in some of his early campaign ads. In particular, he pushed a measure that would require insurance companies to cover certain behavioral therapies.

That measure cleared the state House 105-7 in 2013, but it never gained traction in the state Senate. House lawmakers tried to attach the measure to a broader regulatory reform measure in 2014, but senators rebuffed that effort as well.

Senators said they feared that adding new coverage mandates would raise the cost of insurance for everyone.

Politically, the measure became a bargaining chip. It is not uncommon for leaders of either the state House or the state Senate to take a signature bill associated with top leaders of the other chamber "hostage" in order to win last-minute concessions. In this case, Tillis and other House leaders never had something senators wanted in exchange for the autism bill, so it simply withered on the legislative vine.

Carolina Rising describes its mission as spreading a positive message about Republican efforts in the state, and he sees the autism bill as a good news story despite its ultimate failure

Explaining the Vaccine Theory

Many posts have discussed the theory that vaccines cause autism. At Nova, Emily Willingham and Laura Helft write of the development of the idea:

Two fears powered the unfolding of these events. One was a fear of the unfamiliar ingredients in vaccines, including the mercury-containing preservative thimerosal, which as of mid-2014 was still used in some multidose flu shots but was otherwise phased out of routine childhood vaccines in the United States starting in 2001. The other was a fear of autism, an anxiety fostered by media stories pitting emotional appeals by high-profile anti-vaccine advocates against statistically based reports by medical researchers.

These fears persisted even as evidence mounted that they were completely unfounded. Scientific verification relies on a process of testing and confirmation, not on a single observation. Researchers sincerely grappled with the question of a vaccine-autism link in numerous studies following publication of the 1998 Lancet paper. Some of these studies analyzed data from millions of people, in the quest to see if vaccines and autism might be linked. The overwhelming scientific consensus is that they are not. The Lancet paper specifically addressed a possible association between the MMR vaccine and autism, but later studies also looked at other vaccine-related factors, such as the mercury-containing preservative thimerosal, which is not used in the MMR vaccine. Thimerosal initially raised concerns because mercury is neurotoxic. However, no link with autism—not to mercury, not to thimerosal, not to any vaccines, including the MMR—has been found.

In some fraction of the American population, however, the belief in a link remains. One reason is a coincidence of timing: children are routinely vaccinated just as parents begin to observe signs of autism. Most vaccines are administered during the first years of life, which is also a period of rapid developmental changes. Many developmental conditions, including autism, don't become apparent until a child misses a milestone or loses an early skill, a change that in some cases can't help but be coincident with a recent vaccination.

Adding to such concern is the fact that, sometimes, vaccinations can lead a child to develop a high fever and accompanying febrile seizures. Such seizures are temperature-related and don't cause lasting damage. A tendency to experience febrile seizures runs in families, and about one in 20 young children will have one at some point. According to the U.S. Centers for Disease Control and Prevention, most febrile seizures happen when a child is sick rather than after a vaccination, though the MMR vaccine is associated with a slightly increased risk for febrile seizures. Children with and without autism have these febrile responses, but since their timing may coincide with emerging signs of autism, that can link the two incidents in a parent's mind, even though there is no causal relationship

Barriers to Self-Sufficiency

A release from the US Senate Health, Education, Labor, and Pensions (HELP) Committee:

At the Senate HELP Committee hearing “Fulfilling the Promise: Overcoming Persistent Barriers to Economic Self-Sufficiency for People with Disabilities,” Senator Tom Harkin (D-IA), Chairman of the Senate Health, Education, Labor, and Pensions (HELP) Committee, unveiled a report that he instructed his HELP Committee staff to investigate the barriers that people with disabilities face as they seek to rise out of poverty and enter the middle class....The main issue for people with disabilities over the past quarter century has been one of greater access to public services, businesses, entertainment, telecommunications, and almost every aspect of American life. Unfortunately, twenty-four years after the signing of the ADA, Americans with disabilities remain disproportionately poor and face significant barriers to joining and remaining in the middle class. Despite the greatly increased access, however, people with disabilities remain far more likely to be impoverished, to be out of the workforce, and to be experiencing the detrimental effects of living in poverty.

The full report can be found here.

Some excerpts dealing with autism (emphasis added):

• Individuals with disabilities have the added cost of requiring or needing additional time to perform tasks and accomplish activities that someone without a disability does not have to consider or expend. For example, preparing for work in the morning may take an individual without a disability 45 minutes, including getting out of bed, washing, dressing, and eating breakfast. For a person with a physical disability, an autism spectrum disorder, a sensory disability, or an intellectual disability, the amount of time to accomplish the same tasks may be 90 minutes to more than three hours. This additional time is a huge cost burden that decreases the amount of time an individual has to prepare for daily tasks, work, or care for their own family members.

• Another cost is the limitation in choices for some people with disabilities. Because of auditory processing or sensory input concerns, some individuals with chronic mental health disabilities or autism spectrum disorder, cannot use generally available public services. Many respondents indicated that crowded public transportation was not an option for them because of their disabilities. One person with a traumatic brain injury indicated he could not use public transportation because the tactile and auditory input overwhelmed him and he could not function after riding the bus or train.

• Respondents also reported what they considered unreasonable requirements to receive support services and a lack of knowledge about accommodations for people with disabilities. A young man with autism in the Southwest stated he had applied for SNAP benefits. As he stated, “the law require[d] 40 job search hours per week, but transportation did not count, neither did time on the phone, and neither did Internet time unless it was at the Workforce Solutions office. I wasn’t able to meet these requirements because of transportation and other issues and would repeatedly lose food stamps after a week and have to reapply. When I asked for assistance and said I needed a reasonable accommodation—among other things, not knowing how to make a resume, I was told they had ramps (which I don’t need).”

•  Some respondents recognized that it was not necessarily the fault of the representatives of these programs that caused problems, but the lack of adequate funding for necessary services. A middle-aged man with autism in the Pacific Northwest said, “The existing support systems are simply overwhelmed. The need is far greater than the available resources. The focus in my region is on mental health & substance abuse recovery, not dealing with developmental disabilities…I have experienced first-hand how little is known about helping individuals with developmental disabilities. Most of us are in mental health systems that often admit they have had little or no training in working with people like me.”

• Some of the respondents told about outright prejudice regarding their disabilities. A young man with autism learned that revealing his disability would often cause more problems for him rather than allow him to work with his supervisors to develop accommodations. When describing disclosing his autism to his manager he said, “ I once disclosed to a manager confidentially because I thought it would make things easier, only to have her tell the rest of the management team and have them ‘very concerned’ about it. This was the one job I had a union rep, and he told them it had nothing to do with my job and that was not something she was supposed to go around telling everyone, not that that did much at that point. I did get the message to stop telling people.”

• Respondents repeatedly reported interviews that were cut short once a potential employer discovered the individual had a disability. One middle-aged man with autism said, “I have had more 15-minute interviews than I can count with people who were impressed with my credentials on paper but were crestfallen to find they belonged to me. Most recently, I failed in a group interview process even though the director personally recruited me.”

• A young woman with autism also highlighted the lack of understanding regarding accommodations and prejudice for those who request accommodations. She said, “[If you] need an accommodation like working in a quiet corner with less bright lighting…you're almost guaranteed to not get hired. Skills and abilities take a backseat to fitting in the corporate culture. What is needed isn't more legislation. What we need is education. Employers need to know that basic accommodations aren't that much of a burden, and workers with developmental disabilities need to learn to ask for what we really need in accommodations. But that's not happening. And we're not getting hired. No matter how good we are.” 

ABLE Act Still Lives

A Friday release from the Senate Finance Committee:

Members of the United States Senate Committee on Finance today outlined a path forward on the Achieving a Better Life Experience (ABLE) Act. Senate Finance Committee Chairman Ron Wyden, D-Ore., Ranking Member Orrin Hatch, R-Utah, Senator Bob Casey, D-Penn., and Senator Richard Burr, R-N.C., issued the following joint statement: 

“Under the leadership of Senators Casey and Burr, the Senate has generated positive momentum on the ABLE Act. Thanks to constructive and bipartisan dialogue, the bill sponsors, collaborating with Chairman Wyden and Ranking Member Hatch, have reached a policy agreement that will serve as the foundation for final passage. We are committed to working with our House colleagues to ensure this legislation will be passed in a bipartisan, bicameral manner and sent to the President’s desk in the lame duck session.” 

The Senate Finance Committee Subcommittee on Taxation and IRS Oversight previously held a hearing to discuss the ABLE Act on July 23.

Adults: ASD, the Cliff, Siblings

Michell Andrews writes at Kaiser Health News:

It’s getting easier for parents of young children with autism to get insurers to cover a pricey treatment called applied behavioral analysis. Once kids turn 21, however, it’s a different ballgame entirely.

Many states have mandates that require insurers to cover this therapy, but they typically have age caps ranging from 17 to 21, says Katie Keith, research director at the Trimpa Group, a consulting firm that works with autism advocacy groups. In addition, the federal Centers for Medicare & Medicaid Services recently announced that all Medicaid and Children’s Health Insurance Programs for low-income families must cover comprehensive autism treatment for kids—until they’re 21.

After I wrote about the new Medicaid coverage requirements, the mother of a 23-year-old with autism wrote in asking about coverage options for her son.

Unfortunately, once someone with autism turns 21, “they fall off a cliff,” says Lorri Unumb, vice president of state government affairs at Autism Speaks, an advocacy organization. “It’s the next big frontier that’s got to be addressed.”

Parents of older children have a few options. Some state autism mandates don’t have age caps, including New York, California, Massachusetts, the District of Columbia, Wisconsin and Indiana, according to Keith.

If an insurer denies therapy and a parent lives in one of the states that has an age cap on its autism mandate, it’s worth appealing, Unumb believes. The appeal may be bolstered, she said, by the federal mental health parity law, which bars plans from imposing quantitative or qualitative treatment limitations on mental health care that are more restrictive than those on benefits for physical health conditions.

Like dollar caps on benefits, age is a quantitative limit, says Unumb.

Although the courts have yet to address the issue, she says, “In my opinion, all of these age caps are probably invalid under mental health parity.”

Nicholette Zeliadt reports at SFARI:

Siblings of people with autism face a unique set of challenges: They have a 20-fold increased risk of developing autism themselves, and even those without the disorder may show subtle signs of autism. These traits, such as repetitive behaviors and difficulties with social interactions and communication, are collectively known as the ‘broad autism phenotype,’ or BAP.

A new study suggests that siblings with BAP tend to struggle with employment, relationships and mental health as adults. The findings, published 5 September in the Journal of Autism and Developmental Disorders, highlight the need for greater awareness of BAP in both children and adults.