Voting Rights Complaint in Los Angeles County

From the Disability and Abuse Project:

This Disability and Abuse Project of Spectrum Institute has filed a voting rights complaint with the United States Department of Justice. It alleges that the Los Angeles Superior Court has routinely and systematically engaged in activities that violate the civil rights of people with developmental disabilities.

Violations of the Voting Rights Act and the Americans with Disabilities Act are alleged in the 100-page complaint. Victims are identified as adults who have had or who will have a limited conservator appointed by the Probate Court.

Limited conservatorships are a form of adult guardianship. Petitions for limited conservatorship are generally filed by parents or other relatives of adults with developmental disabilities because the parent or relative believes the adult in question lacks the capacity to make decisions in one or more major life areas: financial, medical, educational, marital, sexual, or social.

The issue of capacity to vote is raised in each new case after a petition for conservatorship is filed. A test is used by petitioners, attorneys, court investigators, and judges to decide whether a conservatee should be disqualified from voting.

The test is whether the adult in question is able to complete an affidavit of voter registration. Judges have told attorneys who represent people with developmental disabilities that the adult must be able to complete the affidavit on his or her own and may not have someone else fill out the form for them.

The federal Voting Rights Act prohibits states from using any test to determine eligibility to vote. The federal Americans with Disabilities Act requires states to allow an adult with a disability to have someone help them in the voting process.

The Los Angeles Superior Court, including its investigators, judges, and court-appointed attorneys are ignoring the clear mandates of these federal laws. As a result, thousands of people with developmental disabilities have unnecessarily and improperly been denied the right to vote in Los Angeles County.

The complaint documents these illegal practices and asks the Department of Justice to intervene so that the voting rights of past victims are reinstated. It also asks the Attorney General to require the court to stop using a test for voter eligibility in the future. A successful resolution of this case has statewide and national implications.

Michael Blood writes at AP:

The complaint says judges in Los Angeles Superior Court use literacy tests to determine if adults in limited conservatorships should have voting rights, a violation of the federal Voting Rights Act. It also says that judges and court-appointed attorneys violate federal laws that allow people with disabilities to have assistance to complete voter-registration forms and cast ballots.

"Autism is a broad spectrum, and there can be low skills and there can be high skills. But what I observed was that people tend to just dismiss it as though they have no skills," Teresa Thompson, whose son has autism and whose case helped prompt the complaint, said in a videotaped statement.

More on the Prevalence Controversy

A previous post noted a recent critique of CDC prevalence estimates.

Disability Scoop gets a statement from CDC:

For their part, the CDC did not respond to an interview request, but defended its current approach in a statement to Disability Scoop. 

“CDC is committed to scientific integrity and a high standard of quality for the autism data that we report. There are different methods to estimate the number of children with autism, each with its strengths and limitations. CDC stands behind the (Autism and Developmental Disabilities Monitoring) Network’s autism tracking method for providing the most complete picture of autism in communities across the United States,” the statement said. 

Furthermore, a CDC spokeswoman pointed to a 2011 study published in the Journal of Autism and Developmental Disorders that the agency said backs its current surveillance methods, finding that the autism rate reported is likely a conservative estimate.

A Guide to Services in the States

From Autism Speaks:

 Federal officials today presented the first state-by-state autism guide on insurance and Medicaid coverage, service delivery, transition services and more. The guide represents a 2012 snapshot of autism in each state, but does not evaluate or compare the quality of services between states or identify best practices. 

Read the report here.   

Ata meeting of the Interagency Autism Coordinating Committee, Sonya Bowen with the Centers for Medicare & Medicaid Services (CMS) said the report took about three years to complete and set out to answer three questions for each state:

• What are states and/or local government doing to provide services for people with ASD?
• What are the types of services and supports that a person with ASD can access?
• How are these supports and services funded?

Medicaid and Behavioral Treatments

Autism Speaks reports:

In a major victory for Medicaid coverage of autism, a federal agency has directed the states to cover medically necessary treatments for autism for children and young adults, including behavioral health treatments such as Applied Behavior Analysis (ABA). An estimated one-third of all children with autism receive primary coverage through Medicaid. 

The announcement by the Centers for Medicare & Medicaid Services (CMS) makes clear that autism treatment must be addressed under Early and Periodic Screening, Diagnostic and Treatment (EPSDT) services which cover Medicaid-eligible children up to the age of 21. 

Dan Unumb, the executive director of the Autism Speaks Legal Resource Center, said the new CMS guidance "is extremely useful in providing a road map for Medicaid coverage of autism treatments, including ABA, and admonishing the states that their obligation to provide all necessary medical care under EPSDT applies with full force to children with ASD.”

IEPs in Louisiana

Disability Scoop reports:

Under a law signed by Louisiana Gov. Bobby Jindal late last month, IEP teams in the state will have the authority to exempt students with disabilities from passing standardized tests in order to receive a high school diploma or advance from one grade to the next. In such cases, IEP teams would determine “rigorous educational goals” for students to meet instead. 

Supporters say the measure will offer more students in special education the opportunity to earn a high school diploma. Critics, however, including some national disability advocacy organizations, have spoken out against the approach saying it will do nothing more than lower expectations. 

Now the law known as HB No. 1015 is drawing concern from the Obama administration. In aletter to Louisiana Superintendent John White, officials at the U.S. Department of Education said the measure may violate federal law and warned that the state could jeopardize its federal education funding if the law is implemented in a manner that’s inconsistent with the Individuals with Disabilities Education Act and other requirements.

One Gene, One Subtype

Jessica Wright writes at Scientific American:

CHD8, a gene that regulates the structure of DNA, is the closest thing so far to an ‘autism gene,’ suggests a study published today in Cell.

People with mutations in this gene all have the same cluster of symptoms, including a large head, constipation and characteristic facial features; nearly all also have have autism.

Autism is notoriously heterogeneous, perhaps involving mutations in any of hundreds of genes. Typically, researchers begin by studying people with similar symptoms and working backward to identify what causes those symptoms. But that approach has not been particularly productive.

“We’ve tried for so long to identify subtypes of autism based on behavior alone and we’ve done abysmally at that,” says lead researcher Raphael Bernier, associate professor of psychiatry at the University of Washington in Seattle.

The reverse approach — that is, beginning with people who all have mutations in the same gene and characterizing their symptoms — may prove to be more useful for simplifying autism’s complexity.

Worse Than Death?

At The Daily Beast, Emily Picciuto writes:

If people are still anti-vax in 2014, not only are they unswayed by strong evidence, they are also unmoved by reportage of outbreaks of vaccine-preventable illnesses. They laugh off the risk of their children’s death. They seem unbothered by the idea that even if their children fully recover from such illnesses, they may pass it to someone who might well be more vulnerable to its dangers. In fact, the more pro-vaxxers explain the evidence, the more intransigent anti-vaxxers are in their beliefs.

It would be bad enough if the only problems with anti-vaxxers were their resistance to evidence and their endangerment of their children and members of their community. There is, however, another, less discussed problem with their movement. It’s not a factual problem, but an ethical one.

Let’s pretend for a moment that the anti-vaxxers are right—that vaccines are linked with autism. Then their repeated exhortations to avoid vaccines suggest that autism is actually a fate worse than death. That autism is the worst thing that could happen to a child—worse even than the suffering and death that can accompany measles, mumps, polio, and diphtheria.

Peter Bell

The Times of Trenton reports:

Because more children these days get classified as autistic, and for other reasons experts do not yet fully understand, autism rates are soaring in New Jersey and elsewhere, but for Peter Bell, autism really hit the radar screen when his own son was diagnosed. 

“I got involved in autism advocacy entirely because I was recruited into it the hard way,” Bell said. His oldest son, Tyler, now 21, was diagnosed with autism in 1996. 

Bell is not just the father of a young adult with autism; he is the CEO of Eden Autism Services, a role he assumed in February. Before that, Bell was with Autism Speaks, the world’s largest advocacy and science organization for autism 

Eden Autism Services was founded in 1975 as a family-oriented school for children with autism 

In the last 30 years, it has expanded to an institution with a wide variety of programs and services for children and adults with autism, and also offers services and resources for their families.

Training ASD People for Police Encounters

Previous posts have described training for police in dealing with autistic people. At The Los Angeles Times, Sandy Banks describes training in the other direction:

Emily Iland spent decades advocating for her 30-year-old son, who has autism, his own apartment, a college degree and an accounting career.

Now, as part of the Autism Society of Los Angeles, Iland is trying to make sure young people like him, pushing for independence, don't wind up as law enforcement statistics.

Since 2007, Iland has been trying to teach Los Angeles Police Department officers how to recognize and interact with people who have autism spectrum disorders. Now she's trying to teach people with autism what to do if they are stopped by police:

Don't run or reach into your pocket. Stay calm. Show them your hands. If you're handcuffed or put into a patrol car, be quiet, be patient, be still. If you're arrested, tell the officers you have a disability and ask to talk to a lawyer.

Those are the basics of Iland's "Be Safe" campaign, which includes a DVD starring young people with autism role-playing police encounters, and a guidebook for parents, teachers and counselors.

New IACC Public Members

A July 2 release from IACC:

The Department of Health and Human Services today announced the appointments of Wendy Chung, M.D., Ph.D., and Robert Ring, Ph.D., as public members of the Interagency Autism Coordinating Committee (IACC), a federal advisory Committee composed of federal agency officials and appointed community stakeholders that provides coordination and a forum for public input on issues related to autism spectrum disorder (ASD). Prior to her departure, former HHS Secretary Kathleen Sebelius appointed Dr. Chung, Director of Clinical Research for the Simons Foundation Autism Research Initiative (SFARI), and Dr. Ring, Chief Science Officer of Autism Speaks, to join the IACC in order to provide additional perspectives and expertise to the Committee. Dr. Chung and Dr. Ring serve as leaders within the two organizations that are the largest private funders of autism research in the United States. Both organizations were previously represented on the Committee by individuals who were appointed in 2012, but who have since left or changed affiliation.

Dr. Insel, Chair of the IACC and Director of the National Institute of Mental Health, welcomed the expertise and dedication that Dr. Chung and Dr. Ring bring to the IACC. "Both Dr. Ring and Dr. Chung will be important additions to the Committee, given the depth of their scientific and clinical experience, and their dedication to improving the lives of people on the autism spectrum," he said.

Dr. Chung, in addition to directing clinical research at SFARI, served as a member of SFARI's scientific advisory board. Dr. Chung is also the Herbert Irving Associate Professor of Pediatrics and Medicine and the Director of Clinical Genetics at Columbia University College of Physicians and Surgeons, where she is the principal investigator for the Simons Variation in Individuals Project (Simons VIP), funded by the Simons Foundation.

Dr. Ring, who has been the Chief Science Officer of Autism Speaks since 2013, also serves as the Chairman of the Board of Delivering Scientific Innovation for Autism (DELSIA), the venture philanthropy arm of Autism Speaks, and leads Autism Speaks' collaboration with the Simons Foundation to launch the Autism BrainNet, a privately-funded multisite brain banking effort, focused on supporting autism research. Dr. Ring previously served as Autism Speaks' Vice President of Translational Research. He holds adjunct faculty appointments in the Departments of Psychiatry at Mount Sinai School of Medicine and Pharmacology and Physiology at Drexel University College of Medicine. Prior to his work at Autism Speaks, Dr. Ring served as Senior Director and Head of the Autism Research Unit at Pfizer Worldwide Research and Development and worked in the area of psychiatric drug discovery at Wyeth Research.

These two new members of the Committee will serve for the remaining months of IACC activity under the Combating Autism Reauthorization Act of 2011, which will expire on September 30, 2014. If reauthorized, the IACC will be open for nominations of new potential public members in late 2014.

Caged

Many posts have discussed restraint and seclusion in school..  It happens at home, too. In Los Angeles, KTLA-TV reports:

The parents of an 11-year-old boy with autism so severe he cannot speak were arrested after police allegedly found him living in a dog kennel inside a home in Anaheim, authorities said Wednesday.

Officers were called to a residence in the 1300 block of Garrett Street (map) at about 6:15 p.m. Tuesday to help Child Protective Services investigators who had received a tip that a young boy was living inside a cage, according to Lt. Bob Dunn with the Anaheim Police Department.

After talking with the parents, officers went inside the home and discovered a fairly large cage, described as a “large dog kennel” containing a mattress, the Police Department stated in a news release.

It appeared the parents had been keeping their son inside it, possibly because the boy was prone to violent outbursts, Dunn said. He emphasized the investigation was in its preliminary stages.

“Perhaps, as a part of his autism, he would have outbursts on occasion. As he’s grown older, the parents had difficulty adapting to these outburst and controlling them,” Dunn said.

“Putting him in that cage may have been a way for them to try to, in their way, control what was going on,” he said.

The boy appeared clean and to have been well cared for otherwise, and did not have any visible injuries, according to Dunn.

DSM and SCD

At  The Chicago Tribune, Wendy Donahue writes:

The previous edition of the DSM included three distinct subgroups under the broad definition of ASD: autistic disorder (AD), Asperger's disorder and pervasive development disorder-not otherwise specified (PDD-NOS).

The latest edition of the manual eliminates those subgroups. It adds a new subcategory called social communication disorder (SCD) to diagnose people who have verbal and nonverbal communication impairments but lack other attributes associated with autism.

Some people diagnosed with PDD-NOS under the old manual would be identified as people with SCD under the new manual.

Some states are "grandfathering in" those diagnosed under the old criteria so they don't lose insurance coverage, said Genevieve Thornton, a clinical psychologist and owner of SociAbility in Northbrook, Ill., which offers programs and therapy for children and adults with ASD, ADHD and related conditions.
...
In recent years, many states have mandated that insurance companies cover applied behavior analysis, delivered by a board-certified behavior analyst, for people diagnosed with an ASD, said Dr. Jeff Skowron, a licensed psychologist and clinical director for Autism Intervention Specialists in Worcester, Mass.

As insurance companies adapt to the diagnostic changes, he said, some plans may not cover services for the new social communication disorder. That could lead to inappropriate diagnoses to enable the person to obtain treatment.

Vaccine Safety

Margaret A. Maglione and colleagues have an article in Pediatrics titled "Safety of Vaccines Used for Routine Immunization of US Children: A Systematic Review."

The abstract [links and emphasis added]:

BACKGROUND: Concerns about vaccine safety have led some parents to decline recommended vaccination of their children, leading to the resurgence of diseases. Reassurance of vaccine safety remains critical for population health. This study systematically reviewed the literature on the safety of routine vaccines recommended for children in the United States.

METHODS: Data sources included PubMed, Advisory Committee on Immunization Practices statements, package inserts, existing reviews, manufacturer information packets, and the 2011 Institute of Medicine consensus report on vaccine safety. We augmented the Institute of Medicine report with more recent studies and increased the scope to include more vaccines. Only studies that used active surveillance and had a control mechanism were included. Formulations not used in the United States were excluded. Adverse events and patient and vaccine characteristics were abstracted. Adverse event collection and reporting was evaluated by using the McHarm scale. We were unable to pool results. Strength of evidence was rated as high, moderate, low, or insufficient.

RESULTS: Of 20 478 titles identified, 67 were included. Strength of evidence was high for measles/mumps/rubella (MMR) vaccine and febrile seizures; the varicella vaccine was associated with complications in immunodeficient individuals. There is strong evidence that MMR vaccine is not associated with autism. There is moderate evidence that rotavirus vaccines are associated with intussusception. Limitations of the study include that the majority of studies did not investigate or identify risk factors for AEs; and the severity of AEs was inconsistently reported.

CONCLUSIONS: We found evidence that some vaccines are associated with serious AEs; however, these events are extremely rare and must be weighed against the protective benefits that vaccines provide.

In the same issue, Carrie Byington writes:

The relationship between parents of young children and their medical providers is powerful. Parents trust their child’s doctor over government officials, family members, or celebrities as the best source of information on vaccine safety.16,17 Furthermore, there is concordance between the beliefs of parents and the beliefs of their child’s health provider about vaccine  safety.18  Importantly, data also demonstrate that for parents who are hesitant to immunize their children but who ultimately do so, it is the physician’s recommendation that is most often cited as the reason they chose to vaccinate. Clinicians can examine the nonbiased data presented in the IOM report and the report by Maglione et al to increase their own confidence in vaccine safety and their advocacy for vaccines. Ideally, provider confidence in vaccine safety will increase the confidence of the families they serve and increase vaccination rates for children, safeguarding the health of the nation.

16. Freed GL, Clark SJ, Butchart AT, Singer DC, Davis MM. Sources and perceived credibility of vaccine-safety information for parents. Pediatrics. 2011;127(suppl 1):S107–S112
17. McCauley MM, Kennedy A, Basket M, Sheedy K. Exploring the choice to refuse or delay vaccines: a national survey of parents of 6-through 23-month-olds. Acad Pediatr. 2012; 12(5):375–383
18. Mergler MJ, Omer SB, Pan WK, et al. Association of vaccine-related attitudes and beliefs between parents and health care providers. Vaccine. 2013;31(41):4591–4595