Julia Bascom and Coalitions

  In The Politics of Autism, I write:

In 2006, 19-year-old Ari Ne’eman, who had a diagnosis of Asperger’s, cofounded the Autistic Self Advocacy Network (ASAN) in response to what members saw as the absence of autistic voices in policy debates on autism. As a motto, the group adopted a saying from the broader disability rights movement, “Nothing About Us Without Us.” ASAN gained national publicity in 2007, with a successful campaign against billboards by the NYU Child Study Center depicting autism as a kidnaper. The ads, said the group, stigmatized people with autism by suggesting that their condition was hopeless. Although billboards appeared only in New York City, the response was nationwide. ASAN used the Internet to join forces with other disability rights organizations and gather thousands of petition signatures.

At The 19th, Sara Luterman profiles Julia Bascom, the executive director of the Autistic Self-Advocacy Network:

She and other disability advocates “were on the Hill constantly,” fighting to stop the Trump administration from gutting Medicaid. Protesters from the radical group ADAPT were dragged out of their wheelchairs by Capitol Police outside then-Majority Leader Mitch McConnell’s office and from Senate hearing rooms. At the same time, Bascom and other disability advocates were meeting with senators and representatives, begging them not to cut or cap Medicaid spending. The attempt to cut Medicaid and repeal the ACA failed.

The fight gave Bascom and other disability advocates new political capital. Labor unions and the reproductive rights movement both have strained histories with the disability community. That has changed significantly since 2017, in large part due to Bascom and other disability leaders building and maintaining bridges where none had previously existed.

“Before 2017, you wouldn’t get disability advocates and labor in the same room. The effort to expand [home care] has pulled together disability, aging and labor in a way that’s unprecedented. And Julia is a major part of that,” Nicole Jorwic, a longtime disability advocate and colleague, told The 19th

Opposition to Lily Eskelon Garcia

In The Politics of Autism, I discuss the issue's role in presidential campaigns. President-elect Biden supports labor unions and people with disabilities. The interests of the two groups do not necessarily coincide.

 From the National Center for Special Education in Charter Schools:

As the Biden education transition team conducts its search for the next Secretary of Education, the Center has joined fellow advocacy organizations in signing onto a letter expressing concerns about the possible nomination of Lily Eskelon Garcia. The full text of the letter is below.

Dear Members of the Biden Education Transition Team,

The signatories of this letter are national advocacy organizations that represent students with disabilities, their families, and the educators who serve them. Together, we advocate for policies that ensure students with disabilities are included in all aspects of society and have every opportunity to succeed. We write to express serious concern about the potential nomination of Lily Eskelsen Garcia as the Secretary of Education and positions previously taken by the National Education Association (NEA) while she served as their president.

Eskelsen Garcia served as President of the NEA from 2014 through 2020 and, in that role, led and oversaw the development of many positions that stood in direct opposition to those taken by parents and parent advocacy organizations in support of children with disabilities. The positions taken by NEA were detrimental to the success of students with disabilities. These include but are not limited to the following:

1. Opposing the core legal tenet of “least restrictive environment” in the Individuals with Disabilities Education Act (IDEA). IDEA makes clear that every child with a disability must receive their education alongside students without disabilities to the maximum extent appropriate. This fundamental promise within the law is known as the “least restrictive environment” (LRE) requirement. Students with disabilities are general education students first. Any student receiving specialized services (e.g., students with disabilities, low-income students, English Learners) is first and foremost a student in the general education system. Research overwhelmingly shows that providing students with disabilities an education in the general education classroom has clear academic, social, and behavioral benefits for students with disabilities and their peers without disabilities.1 Despite this, in 2016, NEA published an article suggesting that inclusion does not prepare students for life after high school and that following the law’s requirement of LRE is not always appropriate.2
2. Opposing statewide assessments, citing their harm on students with disabilities. NEA’s “2020 Policy Playbook” indicates their opposition to statewide assessments and calls on policymakers to reexamine the assessment system due to the tests’ “negative effects on students from all backgrounds, especially those from under-resourced communities, English language learners, children of color, and those with disabilities.”3 Ironically, statewide assessments are the only comparable indicator available to the public demonstrating how all students with disabilities are performing compared to their grade-level peers in multiple grades. It wasn’t until the passage of No Child Left Behind in 2001 that students with disabilities were counted in state and district accountability systems. Before this, parents did not know how their children were performing against state grade-level standards. Disability and civil rights advocates strongly oppose a return to an era when students with disabilities and other systemically marginalized students were invisible.
3. Opposing the 1% cap on the use of alternate assessments in the Every Student Succeeds Act. Research shows that the vast majority of students with disabilities can and should be achieving at grade level content standards.4It is only appropriate for a small percentage of students with disabilities to participate in statewide alternate assessments based on alternate achievement standards (AA-AAS). Thus, the Every Student Succeeds Act imposes a 1% cap, limiting participation in these assessments to 1% of students (approximately 10% or less of students with disabilities). NEA opposed this cap and fought to allow more students to be held to this lower standard, despite students’ ability to achieve at higher levels. Despite it being contrary to the law, being assigned to the AA-AAS can have very significant negative consequences for students with disabilities, including removal from general education instruction and lowering expectations for students to achieve grade-level standards, being assigned to segregated classrooms, and being unable to graduate with a regular high school diploma.
4. Opposing the elimination of the “2 percent” assessment. After the passage of No Child Left Behind (when students with disabilities were first included in the assessment and accountability system) and before the passage of the Every Student Succeeds Act (ESSA), states were permitted to develop alternate assessments on modified achievement standards (AA-MAS).5 According to the National Council on Disability (NCD), “[t]hese assessments allowed districts and states to count students with disabilities who were ‘unlikely to achieve grade-level proficiency’ as proficient if they scored proficient on alternate assessments on modified achievement standards (AA-MAS) as long as students included as proficient did not exceed 2% of all students assessed (2% translates to approximately 20 of students with disabilities).”6 In practice, this assessment (and the instructional practices that accompanied it) was used to lower expectations for students with disabilities and many states assessed more than 2% of their students using this test. In some places, such as districts in California, as many as 70% of students with disabilities were tested under the AA-MAS.7 With the support of the disability community, the U.S. Department of Education issued a rule in 2015 to prohibit the 2 percent rule.
5. Opposing efforts to eliminate seclusion and reduce physical restraint in schools. Data from the U.S. Department of Education Civil Rights Data Collection continues to show that most students restrained and secluded were students with disabilities, who comprised 13 percent of all students enrolled, yet represented 80 percent of all students physically restrained, and 77 percent of all students secluded.9 Restraint and seclusion are dangerous practices that continue to cause children trauma, injury, and death. The disability community has advocated for many years that federal legislation is needed to establish national minimum standards to prohibit the use of seclusion and prevent the use of physical restraint in schools. NEA supported the Keeping All Students Safe Act in 2014 but then failed to do so under Eskelsen Garcia’s leadership through 2020.

As the leader of NEA, Eskelsen Garcia had the opportunity to steer the organization toward equity and access for students with disabilities but failed to do so. We have serious concerns about placing someone with such values at the helm of the U.S. Department of Education — a federal agency that is charged with upholding the civil rights of students with disabilities and improving outcomes for all students.

We would be happy to discuss these concerns in greater detail and hope you’ll seriously consider them as you develop and finalize the slate of potential nominees. We encourage you to ensure that any nominee for Secretary of Education has a strong track record of supporting the inclusion of and ensuring high standards for students with disabilities.

Sincerely,

• Association of University Centers on Disabilities
• Autistic Self Advocacy Network
• Center for Public Representation 
• Council of Parent Attorneys and Advocates 
• Little Lobbyists 
• National Center for Learning Disabilities
• National Center for Special Education in Charter Schools
• National Down Syndrome Congress
• The Advocacy Institute

Hollywood, Autism, and Self-Funded Insurance

In The Politics of Autism, I write:

Sixty-one percent of Americans with employer-sponsored health insurance are in a self-funded plan, in which the employer takes direct financial responsibility for enrollees’ medical claims. Employers that self-fund typically contract with an insurance company to run the plan. Workers then get cards that bear the name of the insurance company and often look just like those from a traditional plan, so many do not even know that they are in a self-funded plan. Most of the time, the distinction makes little difference -- unless the employees are seeking coverage for a family member with autism. The catch is that the state mandates do not apply to self-funded plans. A federal law (the Employee Retirement Income Security Act of 1974, or ERISA) exempts self-funded plans from most state insurance laws, including mandated benefits. When South Carolina passed its mandate, the Unumb family was in a self-funded plan, so Ryan could not benefit from Ryan’s Law. As lawyers, the Unumbs knew about this exception all along, but for many autism families in states with insurance mandates, it comes as an unpleasant surprise.

At Variety, Jessica Ritz writes that her family relies on a Writers Guild of America (WGA) health plan.

But for many families in the entertainment industry affected by autism, there’s a stinging irony. Our WGA health care plan doesn’t cover most of our son’s therapies. Those who create the characters and stories that help spread autism awareness are themselves often denied essential funds to help treat this very condition, leaving the burden of extensive intervention costs largely on our shoulders.
...

California Senate Bill 946, California’s Autism Insurance Mandate initially passed in the state legislature in 2011 and implemented in 2012, helped nudge the needle forward to add autism services to behavioral health insurance coverage in California, including Applied Behavioral Analysis (ABA) and other autism therapies. And yet the loopholes are many. The Writers’ Guild-Industry Health Fund is a “self-funded” entity, meaning it’s administered by a third party and therefore has discretion over what’s included in members’ Anthem Blue Cross plan.

We received a letter explaining the Fund “recognizes” SB 946, but the Health Fund Plan excludes ABA and other “Educational Therapy” treatments. File this discretionary decision under perfectly legal — and a deeply unfair policy that needs to be challenged. (Yet another item to add to the parents of special needs kids’ To Do lists, along with consulting with therapists, attorneys, and advocates.) When your own insurance plan falls short, the buck gets passed to overburdened public agencies, such as California Regional Center.

Ohio State Employee Benefits

A release from the Governor of Ohio:

State of Ohio employees and their families with autism will be able to receive treatment as part of their employee health insurance benefits beginning July 1, 2013. The announcement today is a result of Governor John R. Kasich’s pledge late last year to make autism benefits available to State of Ohio employees, and negotiations recently concluded with state employees’ unions to revise the contractually-negotiated employee health plan. Ohio Department of Administrative Services Director Bob Blair, in cooperation with Joint Health Care Committee (JHCC) Co-chairs Kelly L. Phillips and Michael J. D’Arcy, solidified the language used in the contract earlier this week.
...
Beginning at the start of the next fiscal year, state employees and their dependents will receive access to quality healthcare for ASD including physical, speech and occupational therapy, clinical therapeutic intervention, and mental and behavioral health outpatient services.
Autism services are being defined as part of the “essential health benefit” package offered through the state employees’ health plan, some private health insurance and health insurance sold through the upcoming federally managed health insurance exchange.

OPM, ABA, and Maryland

Previous posts have discussed the decision by the federal Office of Personnel Management to allow (but not require) coverage of ABA under the Federal Employee Health Benefits Program.

The Baltimore Sun reports:

Autistic children of federal workers in 22 states begin receiving insurance coverage this month for a key behavioral treatment, under a decision by the Office of Personnel Management.

Maryland, home to the third-largest population of federal workers in the nation, is not one of them.

"These families desperately need the best coverage for their kids," said Stuart Spielman, senior policy adviser and counsel for Autism Speaks. He said the advocacy group would petition the OPM to expand its coverage as quickly as possible.

...
But Jacque Simon, policy director at the American Federation of Government Employees, said the mix of therapies and medication is not a substitute for applied behavior analysis. Simon said the union has fought for decades for coverage. 

"It's long been recognized as the most effective treatment," she said. "It's been absolutely horrible on the part of OPM to delay coverage for this long. It's really a half-measure, but it's better than nothing."

Union Comments on OPM Decision on ABA

A recent post discussed the Federal Employees Health Benefits Program. Here is a release from the American Federation of Government Employees:

The American Federation of Government Employees lauds the Office of Personnel Management’s (OPM) recent announcement to have Applied Behavior Analysis (ABA) treatment for children with autism included in Federal Employees Health Benefits Program (FEHBP) plans. For years, AFGE insisted that OPM recognize ABA as a clinically proven treatment for the medical condition of autism; however, OPM refused saying it was more an “educational” intervention than a medical treatment. Through AFGE’s efforts, beginning in 2013, 39 FEHBP plans in 22 states will offer some level of coverage for ABA. While this is a critical first step, it is short of the mandate in place in 31 states that requires private insurers to provide ABA coverage.

“OPM still has not required FEHBP plans to cover ABA. It has merely taken the important first step of allowing coverage,” said AFGE National President J. David Cox. “While we consider this an important victory, we still must do more to ensure that the parents of autistic children have all of the resources available to them to care for their children. Parents should not have to worry if vital services will be covered by their insurance plan.”

AFGE will continue to press OPM to require all plans to cover ABA on the same terms that they cover other therapeutic treatments for illnesses.

The following FEHBP plans will offer full or partial ABA coverage in the states listed below.

AZ Health Net Arizona
AR QualChoice
CA United Healthcare CA; Anthem Blue Cross Select HMO/CA; Blue Shield of CA Access + HMO
FL Capital Health; Coventry So FL; Humana Coverage First; Humana Inc
GA Humana Coverage First
IL Blue Cross Blue Shield Illinois; Blue Preferred Plus POS; Humana Coverage First; Humana Benefit Plan IL; Humana Health Plan
IN Physicians Health Plan No Indiana
IA Coventry IA
KS Coventry KS; Humana Coverage First
KY Humana Coverage First; Humana Health Plan Inc
LA Coventry LA
PA Geisinger; Health America; UPMC Health Plan
MA Fallon Community Health Plan
MI Bluecare Network MI; Grand Valley; Health Alliance
MO Blue Preferred Plus POS; Humana Coverage First; Humana Health Plan Inc; United Healthcare of Midwest
NV Health Plan NV
NM Lovelace
NY Blue Choice; CDPHP Universal Benefits; Independent Health Association; MVP Health Care
TX Firstcare; Humana Coverage First; Humana Health Plan TX; United Healthcare of TX
VA Optima
WA Group Health
WI MercyCare

Teamsters and Autism

Autism Speaks reports:

Teamsters Local 25 president Sean O'Brien announced the beneficiaries of the 5th Annual Light Up The Night, A Gala for Autism, which was held in April in Boston. On May 24, at a reception in Medford, Mass., O'Brien presented a check for $200,000 to Autism Speaks president, Mark Roithmayr and president of the New England Chapter of Autism Speaks, Larry Cancro.

Honorary committee members attending included boxing legend "Irish" Micky Ward and Lisa Strout from the Massachusetts Film Office. Other non-profits attended and received donations, but Autism Speaks was honored with the majority of the funds raised.

"We are incredibly grateful to have the support of Teamsters Local 25," Roithmayr said. "Sean O'Brien has become a powerful voice and advocate for families living with autism. In addition to raising significant revenue, his leadership, passion and commitment have led to the passage of autism insurance reform legislation in Massachusetts and greater awareness in the community."

"This event gets better and better each year," Sean O'Brien said. "We have a lot of fun but at the end of the night it's all about raising money for autism. We're thrilled to be able to donate $240,000 to local autism charities."

Verbal Abuse and the Wire: A Followup

Here is a followup to the story of the father who put a wire on his ASD son.  It shows why unions are not always allies of ASD people and their families.

The former teacher of an autistic boy allegedly mistreated by staff at a New Jersey school did not call him "a bastard" or make other harsh comments that were secretly recorded by the child's father, her lawyer said in a statement.

The statement also accused the boy's father, Stuart Chaifetz, of putting the teacher, Kelly Altenburg, and her family "in harms way," and said she wasn't even in the room for part of the day.
...
At least one classroom aide reportedly lost her job, but the state's largest teachers union said that because Altenburg had been transferred to another school, and not fired, she had been exonerated of making the remarks. Cherry Hill Superintendent Maureen Reusche, however, said "the investigation remains ongoing." [emphasis added]
...
The statement from Altenburg's lawyer said the accusations had "hurt her deeply" and she wanted to "set the record straight."

"Mr. Chaifetz ... has been disingenuous in his assertions and has failed to advise the public accurately, including the fact that for at least approximately one hour in the beginning of the day at issue, Mrs. Altenburg was not even in the classroom with Mr. Chaifetz's son," the lawyer, Matthew B. Wieliczko, wrote in the emailed statement. He said she was at a "Professional Learning Community Meeting" that morning.

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Disabled Adults in New Jersey

The Record has a series on the care of disabled adults in New Jersey.

Today's report focuses on the state's reliance on big institutions instead of community care.

There’s a lot of evidence backing up that assessment:

• Nearly 8,000 disabled adults are on a waiting list for services ranging from training to group homes; they live at home, often cared for by aged parents.
• It costs on average $100,000 more a year to care for someone at a developmental center than it does to care for people with the same level of disability in the community, the state estimates.
• New Jersey’s rate of institutionalization is higher than all but two other states: Mississippi and Arkansas. Nearly one in five of the more than 14,000 individuals who are provided with residences live in large state institutions.
• The Division of Developmental Disabilities spends just about a third of its $1.5 billion operating budget on those institutions, even though they are home to just 6 percent of disabled adults in New Jersey. Only Texas, Mississippi and Louisiana spend a smaller share of their disability services budgets on community programs.

...

The state has perhaps a more fundamental reason to expand its community services: In 1999, the U.S. Supreme Court ruled that the federal Americans With Disabilities Act requires states to provide the disabled with the most appropriate services possible in the least restrictive setting. Disability Rights New Jersey, a Trenton advocacy group, has filed two federal lawsuits against the state, arguing that both the waiting list and the large number of disabled individuals still institutionalized violate the Supreme Court ruling.

...

Caring for more of the disabled in the community would almost unquestionably reduce costs for the Division of Developmental Disabilities. But some question how much savings will actually be realized.

One researcher who analyzed a series of national studies [the 2003 literature review is here] on the costs of serving the developmentally disabled pointed out that a community system just shifts some expenses from one arm of government to another.

Instead of seeing a doctor who’s on the institution’s staff, for example, clients will go to physicians in the community.

“You’re just flopping the cost over to Medicaid,” noted Kevin Walsh, director of quality and management at the Developmental Disabilities Health Alliance in Gloucester.

But there is one area of real savings for the state, Walsh noted: Direct-care workers in the community are paid significantly lower salaries and pensions than their unionized counterparts at the state developmental centers.

Abuse at State-Run Homes in New York

The New York Times reports on abuse in state-run homes for the developmentally disabled:

The Times reviewed 399 disciplinary cases involving 233 state workers who were accused of one of seven serious offenses, including physical abuse and neglect, since 2008. In each of the cases examined, the agency had substantiated the charges, and the worker had been previously disciplined at least once.

In 25 percent of the cases involving physical, sexual or psychological abuse, the state employees were transferred to other homes.

The state initiated termination proceedings in 129 of the cases reviewed but succeeded in just 30 of them, in large part because the workers’ union, the Civil Service Employees Association, aggressively resisted firings in almost every case. A few employees resigned, even though the state sought only suspensions.

...

The Civil Service Employees Association, one of the most powerful unions in Albany, makes no apologies for its vigorous defense of the group-home workers it represents.

But the union’s approach — contesting just about every charge leveled at a worker — has contributed to a system in which firings of even the most abusive employees are rare. Most disciplinary measures represent a compromise between management and the union, often reached at the urging of an arbitrator chosen by both sides.

Ross D. Hanna, the director of contract administration for the association, likened the union’s role to that of public defenders, saying it was required by state law to represent its members.

“If they’re brought up on charges, we have an absolute duty to represent them,” Mr. Hanna said. “That’s our job.”

He added: “When we know the person is guilty, we try to convince the person to get out of it by resigning. But if the person decides to go forward, we have to do our best job.”