"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.

Wakefield Update

The Austin American-Statesman reports:

Andrew Wakefield, who was stripped of his British medical license in 2010 after his autism research had been discredited, cannot sue a British magazine, editor and reporter for defamation in Texas, a state appeals court ruled Friday.

The articles in the British Medical Journal — raising substantial questions about the accuracy of Wakefield’s 1998 study alleging a link between autism and vaccines — did not have strong enough ties to Texas to give Wakefield access to the district court in Austin, where he lives, the 3rd Court of Appeals said.

State courts lack jurisdiction over the British publication because its 2011 articles did not concern Texas or activities that occurred in Texas, nor were they aimed at Texans, said the opinion, written by Justice Scott Field.

“The publications concerned Wakefield’s conduct and activities that occurred in England, and Texas is never mentioned in any of the articles,” Field wrote.

The court upheld District Judge Amy Clark Meachum’s decision to toss out Wakefield’s lawsuit because Texas courts lacked jurisdiction over the defendants, including reporter Brian Deer and editor Fiona Godlee.

Disability Treaty Stalls Again

Ramsey Cox reports at The Hill:

Republicans blocked Sen. Tom Harkin’s (D-Iowa) request to vote on the United Nations' treaty for persons with disabilities.

Harkin asked for unanimous consent to debate the treaty for two hours and then hold an up-or-down vote that would require two-thirds of the Senate’s support for adoption. But Sen. Mike Lee (R-Utah) objected.

“Another sad, irresponsible day in the United States Senate,” Harkin said on the Senate floor Wednesday. “There is no controversy over this.

“Is this just another blatant form of discrimination against people with disabilities?”
Harkin pointed out that the treaty has bipartisan support. He said only Tea Party extremist who hate the United Nations oppose it.

Lee said the adoption of any treaty deserves more than two hours of debate and senators should be able to offer amendments.

Two years ago, Senate Republicans blocked the treaty on a 61-38 vote despite former Senate Majority Leader Bob Dole (R-Kan.) lobbying for adoption.

Autism and Medicaid: Recent Developments

Autism Speaks reports:

In response to a July directive from the federal government to step up Medicaid-funded treatment for autism, a number of states are quickly moving forward to add benefits for behavioral health treatment. One state--Hawai'i--has been hit with a class action suit for failing to provide the coverage.

The Autism Speaks Legal Resource Center (ASLRC) has been working with advocates and state officials from around the country on implementing the July 7 directive from the Centers for Medicare & Medicaid Services (CMS), said Dan Unumb, ASLRC's executive director.

One-third of all children with autism receive primary insurance coverage through Medicaid; including secondary coverage, half of all American children with autism are impacted. Medicaid is a joint federal/state program.

"This a game-changer for the autism community," Unumb said. "How soon this will play out in each state and kids get treatment remains to be seen, but the ball is moving down the field."

Among the highlights since the CMS announcement was issued:

• California has moved forward with plans to require coverage of behavioral health treatment, including applied behavior analysis (ABA), starting Monday. An estimated 12,000 children will gain coverage through Medi-Cal, including 6,000 who currently have no coverage for treatment.
• Nevada is hosting a public workshop today to start implementing behavioral health treatment coverage through its Medicaid program. Based on the public input and further review, the state will submit a Medicaid plan change to CMS for approval.
• Connecticut Gov. Dannel Malloy has directed his administration to develop a "full range" of autism treatments, including ABA, to be covered through the state's Medicaid program. Further details are to be provided in October at a meeting of the Autism Spectrum Disorders Advisory Council.
• A federal class action suit has been filed against Hawai'i for denying ABA benefits through its Medicaid program for autism treatment. The complaint, Egan v McManaman, estimates that 1,500 to 1,900 children under the age of 21 would be affected.

FDA Considers Shock Ban

AP reports:

The Food and Drug Administration is considering whether to ban devices used by the Judge Rotenberg Educational Center in Canton, Massachusetts, the only place in the country known to use skin shocks as aversive conditioning for aggressive patients.

It's a rare move by the FDA, following years of complaints from disability rights' groups and even a U.N. report that the shocks are tantamount to torture.

FDA Commissioner Margaret Hamburg says the shock therapy has raised a lot of questions.

"We really wanted to take a much more focused and rigorous look at it," Hamburg said in an interview with The Associated Press. "There's a lot of concern about the downside of this approach and the harm and the risk to the patients receiving it."

Rotenberg must get a court's approval to begin administering skin shocks to a student. The center uses a graduated electronic decelerator, or GED, that is attached to the arms or legs. If the student acts aggressively — head-banging, throwing furniture, attacking someone — then a center worker can press a button to activate the electrode, delivering a two-second shock to the skin.

...
Cheryl McCollins sued the center for malpractice after her autistic son, Andre, was shocked more than 30 times over approximately seven hours in 2002. In a surveillance video played in court, Andre is seen lying face down with his arms and legs tied to a restraining board. He can be heard screaming, "Help me. No." The center settled the suit.

The center says that "is not the same treatment approach JRC would take today." Crookes, the center's executive director, said skin shocks would be suspended earlier and the center would take a closer look at potential triggers of aggression.

Sharon Wood of Charlottesville, Virginia, fears a ban on skin shocks would return her 21-year-old son, Joshua, to the violent behavior that used to force her to lock herself in a room with her young daughter. Joshua Wood is profoundly autistic. His parents say they tried everything but the only thing that worked was the shocks.

"Do not take away what is saving his life," Sharon Wood said in an interview as the FDA considers the ban. "Don't take this away until you are convinced there are better alternatives."

NIMH Funds Research on Services

The federal government has come under criticism from self-advocates for stressing medical treatments over services in funding autism research. From a release by the National Institute of Mental Health:

While research has yielded much on understanding the biology of autism, access to effective treatment and services tailored to life stages remains a challenge for people with ASD and their families. In 2013, the Interagency Autism Coordinating Committee, a U.S. Department of Health and Human Services federal advisory group, developed an updated Strategic Plan for Autism Spectrum Disorder Research which identified access to services as a central concern of individuals and families affected by ASD. To foster research on these issues, NIMH solicited applications to study models for ASD service delivery in early childhood, during the transition out of high school, and in adulthood.

...

NIMH has awarded $7.9 million in initial year funding for these 12 research grants. Each project addresses issues particular to one of three age groups (also see a separate list of the 12 projects with a brief description of each):

• Early childhood (five projects): Research suggests that early and intensive interventions for ASD can reduce language and behavioral challenges, but early screening and referral to treatment is not routinely provided in pediatric settings. These newly funded projects target infants from birth to 2 years of age and are intended to test strategies for universal screening coupled with referral to and engagement in services when indicated in order to determine how to achieve earlier intervention for children with ASD in this age group. These studies will address the issues of coordination among different settings, such as primary care, social services, the education system, disability programs, ASD specialty care, and public and private health care funding.
• Transition-age (four projects): The transition period between secondary school and adulthood can be especially difficult for young people with ASD. Once they graduate from high school, these young people may not qualify for or get immediately connected to adult services. Research suggests they are less likely to continue their education or be employed, even in comparison with young adults with other types of disabilities. The new research will develop school-based service coordination to engage youth and their families in planning for the transition to adulthood in order to reduce or eliminate disconnection from needed supports, services, or age-relevant activities.
• Adults (three projects): In addition to the challenges faced by young people with ASD aging into adulthood, an increasing number of previously undiagnosed adults are being identified. Many adults diagnosed with ASD have difficulties with employment, social relationships, housing, and functioning independently. Studies will develop and test strategies to maintain engagement in community support, vocational and employment programs, and other services aimed at supporting independent living.

The five early childhood studies form a research network that will pool data to expand the ability to conduct further research on this valuable dataset. These data, from which personally identifiable information is removed to protect privacy, will be housed In the NIH-funded National Database for Autism Research and will be made available to others in the ASD research community.

An emphasis of this initiative is that the service strategies being developed must be effective in the real world of diverse communities and health systems. An explicit goal is to help reduce the disparities between different ethnic and socioeconomic groups in access to services. These studies have the potential to transform the current ASD service system by designing a set of strategies for young children, transition age youth, and adults that are effective and engineered for rapid adoption and implementation on a broad scale.

“The studies will provide a critical evidence base on how community services can improve the treatment, functioning, and community integration of people with ASD at important life stages,” said Denise Juliano-Bult, M.S.W., chief of NIMH’s Systems Research Program and the Disparities in Mental Health Services Research Program.
For a full list of grantees and projects, visit: http://www.nimh.nih.gov/news/science-news/2014/new-grants-fund-cross-lifespan-services-research-for-autism-spectrum-disorder.shtml

Parent and Educator Perspectives on Services

Suzannah Iadarola and colleagues have an article in Autism titled "Services for Children with Autism Spectrum Disorder in Three, Large Urban School Districts: Perspectives of Parents and Educators.  The abstract:

This study used qualitative methods to evaluate the perceptions of parents, educators, and school administrators in three large, urban school districts (Los Angeles, Philadelphia, and Rochester) regarding services for children with autism spectrum disorder within the context of limited district resources. Facilitators followed a standard discussion guide that contained open-ended questions regarding participants’ views on strengths and limitations of existing services and contextual factors that would facilitate or inhibit the process of introducing new interventions. Three primary themes were identified: (1) tension between participant groups (teachers and paraprofessionals, staff and administration, teachers and parents, special education and general education teachers), (2) necessity of autism spectrum disorder–specific and behavioral training for school personnel, and (3) desire for a school culture of accepting difference. These themes highlight the importance of developing trainings that are feasible to deliver on a large scale, that focus on practical interventions, and that enhance communication and relationships of school personnel with one another and with families.

Yet Another Autism Charity Scam

A number of posts have described various autism scams. The Seattle Post-Intelligencer reports:

A Lynnwood wife and husband claiming to help impoverished autistic children were actually lining their pockets with donations taken outside Seattle-area grocery stores, the state Attorney General’s Office claims.

Brandie Christian was already caught in one charity scam involving assistance to children with autism. Now, state consumer protection investigators contend she and husband Joshua Hani have been scamming donors to a charity they launched – Autism Outreach Foundation – as regulators shuttered the other bogus nonprofit.

While they pledged to give money to poor parents whose children needed therapy for autism or related conditions, just $4,000 of the more than $400,000 they collected from donors actually went to needy families. Instead, state investigators contend Christian and Hani spent donors’ money on designer clothes, travel and personal expenses.

Earlier in September, attorneys for the state filed a civil lawsuit against the pair in an effort to shut down the Autism Outreach Foundation. The organization – which hasn’t issued a single grant to a struggling family in 2014 – appears to still be collecting money from donors.

A Small Pilot Study of Infant Start

A release from UC Davis:

Treatment at the earliest age when symptoms of autism spectrum disorder (ASD) appear – sometimes in infants as young as 6 months old – significantly reduces symptoms so that, by age 3, most who received the therapy had neither ASD nor developmental delay, a UC Davis MIND Institute research study has found.

The treatment, known as Infant Start, was administered over a six-month period to 6- to 15-month-old infants who exhibited marked autism symptoms, such as decreased eye contact, social interest or engagement, repetitive movement patterns and a lack of intentional communication. It was delivered by the people who were most in tune with and spent the most time with the babies: their parents.

“Autism treatment in the first year of life: A pilot study of Infant Start, a parent-implemented intervention for symptomatic infants,” is co-authored by UC Davis professors of Psychiatry and Behavioral Sciences Sally J. Rogers and Sally Ozonoff. It is published online today in the Journal of Autism and Developmental Disorders.  [CLICK HERE FOR FULL TEXT]

"Most of the children in the study, six out of seven, caught up in all of their learning skills and their language by the time they were 2 to 3," said Rogers, the study's lead author and the developer of the Infant Start therapy. "Most children with ASD are barely even getting diagnosed by then."

"For the children who are achieving typical developmental rates, we are essentially ameliorating their developmental delays," Rogers said. "We have speeded up their developmental rates and profiles, not for every child in our sample, but for six of the seven."

Rogers credited the parents in the small, pilot study with making the difference.
"It was the parents – not therapists – who did that," she said. "Parents are there every day with their babies. It's the little moments of diapering, feeding, playing on the floor, going for a walk, being on a swing, that are the critical learning moments for babies. Those moments are what parents can capitalize on in a way that nobody else really can."

...
Given the preliminary nature of the findings, the study only suggests that treating these symptoms so early may lessen problems later. Larger, well controlled studies are needed to test the treatment for general use. However, the researchers said that this initial study is significant because of the very young ages of the infants, the number of symptoms and delays they exhibited early in life, the number of comparison groups involved, and because the intervention was low intensity and could be carried out by the parents in everyday routines.

The findings may indeed be promising, but the media are hyping the study.  The word "miracle" appears in at least one story.  There were only seven infants in the treatment group and seven in the comparison group.  See the highlighted passage above.

Low Rate of Developmental Screening

Catherine E. Rice and colleagues report at MMWR:

The results in this report indicate that despite recommendations that all children be screened for developmental delays by health-care providers at 9, 18, and either 24 or 30 months and for ASD at 18 and either 24 or 30 months (22), the parents of only 21.1% of children aged 10–47 months reported in 2007 that they were asked by a health-care provider to complete a developmental screening tool concerning their child's development in the past year. The prevalence of physician-ordered, parent-completed developmental screening was low regardless of demographic, health-care, or risk indicators. Developmental monitoring was reported for 52.3% of children in the past year, indicating that health-care providers are more likely to use informal discussions and questions about parental concerns related to learning, development, or behavior than they are to use parent-report questionnaires. However, indications of a parental concern or risk for a developmental delay did not result in additional screening for those children. This type of informal monitoring is less likely to result in appropriate identification of children with developmental delays (9). As of 2007, only one in five children were reported to have met national standards for quality health care specified by NQF targeted by Healthy People 2020 for universal developmental screening of all young children in pediatric health-care settings.

Housing: Seniors v. People with Disabililties

At The Minneapolis Star-Tribune, Chris Serres writes about a housing conflict in Columbia Heights, MN:

Heights Manor, much like subsidized senior housing across the state, is being pulled apart by a recent influx of younger people with mental disabilities, who are being forced by a tight rental market and a shortage of affordable apartments to live with the elderly. Statewide, the percentage of disabled people in public housing increased 24 percent between 2009 and 2012, the last year for which data are available, according to the Department of Housing and Urban Development (HUD).

The mix of elderly and younger disabled populations can be volatile. At Heights Manor, elderly residents have complained of an increase of physical threats, drug use, thefts, loud music, late-night parties, and disorderly behavior. Over the past year, calls to local police have risen enough that residents have set up a neighborhood watch program — something they would have considered unthinkable not long ago.

Not reported to the police, however, are the everyday clashes occurring as elderly people used to living among people like them seek to enforce building rules on the newcomers. In some cases, the younger disabled people feel discriminated against by the older residents.

Disability advocates say such tensions are likely to intensify as the state moves forward with ambitious plans to further desegregate housing for the disabled. Under pressure from the federal courts, which recently admonished the state for not moving quickly enough to integrate disabled people into the community, state and local authorities are preparing to move thousands of people with mental and physical disabilities from group homes and other institutional settings to individual apartments.

Educational Inclusion Varies by State

At Focus on Autism and Other Developmental Disabilities, Jennifer A. Kurth has an article titled "Educational Placement of Students With Autism: The Impact of State of Residence."  The abstract:

Typically, child characteristics such as IQ and severity of autism symptoms are thought to determine educational placement. The present study examines external factors, including state of residence and state funding formulas, to determine their potential influence on placement outcomes. Findings reveal that considerable variations exist among states in placing students with autism spectrum disorders in inclusive, mainstreaming, self-contained, and separate schools. This variation suggests that factors beyond child characteristics, such as IQ, play a major role in educational placement decisions. Furthermore, states in the Eastern United States tend to have more restrictive placement rates than states in the Western United States. State special education funding was found to have a minimal impact on placement outcomes. As a whole, it is unlikely that child characteristics alone determine placement outcomes.

From the article:

States range in the percentage of students who are educated in general education settings for 80% or more of the school day from 8% (Washington, D.C.) to 62% (Iowa). The average percent of students with ASDs in the 51 states (50 U.S. states and Washington, D.C.) was 36.6%, with a standard deviation of 10.8. Inspection of Figure 1 further reveals that 7 of the 10 most inclusive states are West of the Mississippi River (Western United States). Of the 10 least inclusive states, 7 of those states are in the Eastern United States (East of the Mississippi River).

...

Autism Media Coverage in China

Nicholette Zeliadt writes at SFARI:

Newspapers in the U.S. are replete with stories about autism. That’s not necessarily the case in many other parts of the world, where autism tends to be unknown or misunderstood by both the public and health professionals.

In China, newspaper coverage of autism has increased over the past decade, according to a new study, but those media reports often do not discuss scientific facts, and they cite family members of people with the disorder more often than health professionals or researchers. That could send the message that autism is a family issue, rather than a medical or societal one, the authors say.

The study, published 29 July in Health Communication, analyzed the content of 795 news stories containing the Chinese words for ‘autism’ and ‘lonely disease,’ a name sometimes used to refer to the disorder. The articles were published between 2003 and 2012 in five of the country’s most popular daily newspapers.

Autism Society on the ABLE Act

The Autism Society has a statement on the ABLE Act:

Congress is coming back next week, and we need our lawmakers to take dramatic action. The Achieving a Better Life Experience (ABLE) Act of 2013 (S.313/H.R.647 was introduced in the 113th Congress by a bipartisan, bicameral set of Congressional Champions including Sens. Robert Casey, Jr., (D-PA) and Richard Burr (R-NC), and Reps. Ander Crenshaw (R-FL), Chris Van Hollen (D-MD), Cathy McMorris Rodgers (R-WA), and Pete Sessions (R-TX). The act was sent to the House Floor just before Congress adjourned for the August recess. We are encouraging you to remind your representative to move this bill and get it approved and signed by the President. If this Act is passed and signed into law, parents and individuals will have one additional way to take advantage of tax-free savings through ABLE Act accounts, similar to IRA accounts. The bill aims to ease financial strains faced by individuals with disabilities to cover qualified expenses such as education, housing, and transportation but we need it passed now. Get involved and contact your legislator and tell them the positive change this bill will make!

Another Bus Incident

KNBC in Los Angeles reports on yet another bus incident, this time in Orange County, California:

California Vaccinations Down

The Los Angeles Times reports:

California parents are deciding against vaccinating their kindergarten-age children at twice the rate they did seven years ago, a fact public health experts said is contributing to the reemergence of measles across the state and may lead to outbreaks of other serious diseases.

The percentage of kindergartens in which at least 8% of students are not fully vaccinated because of personal beliefs has more than doubled as well, according to data on file with the state. That threshold is significant because communities must be immunized at a high rate to avoid widespread disease outbreaks. It is a concept known as herd immunity, and for measles and whooping cough at least 92% of kids need to be immune, experts say.
...
State law requires kindergartners to be vaccinated against measles, pertussis ( whooping cough), polio, mumps, rubella, hepatitis B, chicken pox, diphtheria and tetanus.

Parents who say immunization is against their personal beliefs can get exemptions. Some opt out of all the mandatory shots, while others allow students to get select vaccinations. There are also temporary and medical exemptions.

That makes exact vaccination rates hard to assess. But the upward trend in belief exemptions is troubling to health experts. California is coping with a whooping cough epidemic and earlier this year experienced a cluster of measles outbreaks, thanks in part to insufficient vaccination.

The anti-vaccination movement is being driven by parents who question the medical consensus that inoculations are safe. Some are concerned that vaccines could trigger autism — a theory that has been thoroughly discredited by scientists.

CBO Analysis of the ABLE Act

From the Congressional Budget Office:

H.R. 647 would allow for the creation of a new type of tax-favored account—an ABLE account—for the benefit of individuals with disabilities. Assets in an ABLE account and distributions from the account for qualifying expenses would be disregarded when determining the beneficiary’s eligibility for most federal means-tested benefits.

CBO estimates that enacting H.R. 647 would increase direct spending by $1.2 billion over the 2015-2024 period. Additionally, the staff of the Joint Committee on Taxation (JCT) estimates that enacting H.R. 647 would decrease revenues by $0.9 billion over the 2015-2024 period. In total, CBO and JCT estimate that enacting the bill would increase deficits by $2.1 billion over the next 10 years. Pay-as-you-go procedures apply because enacting the legislation would affect direct spending and revenues.

CBO has determined that the nontax provisions of the bill contain no intergovernmental or private-sector mandates as defined in the Unfunded Mandates Reform Act (UMRA). Similarly, JCT has determined that the tax provisions of the bill contain no intergovernmental or private-sector mandates as defined in UMRA.

Screening and Followup

A number of posts have discussed screening. Shaun Heasley reports at Disability Scoop:

Kids with developmental delay are far more likely to receive the early intervention services they need if pediatricians follow up after conducting routine screenings, researchers say.

In a study of clinic patients at a large children’s hospital in Colorado, researchers found that simply performing regular developmental screenings was often not enough to ensure kids got help.

Even after implementing standardized screening procedures for doctors, just 20 percent of the children flagged as having possible delays were referred to community resources including early intervention.

However, when the clinic began aggressively following up with phone calls in cases where children were found to have possible delays, referrals increased to 50 percent, the study found.

The abstract, from Pediatrics:

 Improving Developmental Screening Documentation and Referral Completion
Ayelet Talmi, PhD, Maya Bunik, MD, MSPH, Ryan Asherin, MA, Michael Rannie, RN, MS, Tyler Watlington, MD, Brenda Beaty, MSPH, and Stephen Berman, MD
BACKGROUND AND OBJECTIVES: Screening, early identification, and referral improves outcomes for young children at risk for developmental delays. Effective developmental screening processes should include efforts to ensure referral completion and documentation of evaluation results and service eligibility in the child’s medical record. Our objectives were to improve provider documentation of actions taken after an abnormal developmental screening result and increase Early Intervention (State Part C) referrals.
METHODS: Various strategies including an electronic medical record template, monthly clinical informatics reporting, and a phone follow-up after an abnormal screening result were implemented to enhance provider documentation of screening results and improve referral actions and outcomes.
RESULTS: Of the children eligible for screening (n = 3023), 2610 (86%) were screened, with 382 (15%) scoring in the abnormal range. With phone follow-up, 50% of the abnormal screenings were referred to community resources, including 43% to Early Intervention (EI), in contrast to 20% community referrals and 13% EI referrals with the screening template only (P < .0001). Provider documentation of EI outcomes increased when screening templates and follow-up calls were implemented together (31%) as compared with using the screening template alone (15%).
CONCLUSIONS: Enhanced documentation of developmental screening efforts using screening templates and clinical informatics reporting in combination with phone follow-up after an abnormal screening result improved developmental screening outcomes, including referral rates, completed evaluations, and provider documentation of EI services. Such strategies can be effectively used in pediatric primary care settings to improve screening processes and ensure that young children access appropriate services.