Diagnosis and Frustration

In The Politics of Autism, I discuss evaluation and diagnosis of young children.

At The San Diego Union-Tribune, Bradley J. Fikes writes of the Samo family, which experienced frustration in getting an autism diagnosis for their son.

The Samos are fortunate to live in San Diego, which has strong programs to detect and treat autism and other neurological conditions. These include programs offered by University of California San Diego at its Autism Center of Excellence, at https://autism-center.ucsd.edu, and Autism Society San Diego at www.autismsocietysandiego.org. The San Diego Regional Center, at http://sdrc.org, helps individuals with a variety of developmental disabilities.

Dayna Hoff knows the Samo family’s frustration first-hand. She and husband Todd Hoff created San Diego-based Autism Tree Project Foundation in 2003 after their son Garret was diagnosed with autism. Garret was diagnosed at two years and nine months, and getting that diagnosis took nine months, Dayna Hoff said. After receiving therapy Garret, now 17, is doing well.

“It’s really disappointing to me to hear that this has happened, but it’s not surprising, because that’s why the foundation even exists,” said Hoff, the foundation’s volunteer executive director.

Pediatricians are more responsive than before, Hoff said. However, Hoff said they are at a disadvantage in detecting developmental delays. They simply don’t see the children enough to have a comprehensive understanding of their development. They usually see children when they’re sick.

In 2005 Autism Tree started a free preschool screening program to identify children at risk of developmental delays, including autism. Children found to be at risk are referred to specialists for a definitive diagnosis. The program works with preschools in San Diego and the San Francisco Bay Area. Go to j.mp/preschoolaut for more information.

“Every preschool director I’ve ever met, and teachers, have an absolute sense of urgency when they see that a child isn't meeting a developmental milestone,” Hoff said. “It really pops out to them when a child isn't meeting a milestone because there's all these other children right next to them.”

Go to www.autismtreeproject.org for more information on the foundation’s services.

Ernst and Young and Neurodiversity

In The Politics of Autism, I discuss the employment of adults with autism and other developmental disabilities. Many posts have discussed programs to provide them with training and experience. 

Olga Khazan writes at The Atlantic about Ernst and Young:

[Hiren] Shukla leads EY’s neurodiversity program, a small—at least for now—initiative by the firm to recruit and hire people on the spectrum to work on data-heavy tasks like process improvement and cybersecurity. Instead of checking for a firm handshake and can-do smile during an hourlong meeting, EY takes these job candidates through a two-week process that combines virtual interaction and an in-house “superweek” of team building and skills assessment. During that week, EY tries to acclimate the individuals to the office environment. Those who “pass” get job offers.

...

The challenges to growing the program have been in finding the right people, Shukla says—the company works with university offices of disability and vocational rehab agencies to recruit potential new employees. People with autism are often un- or under-employed, even in their 20s. Those who do have jobs might be stuck in roles like stocking shelves or filing, which spare them human interaction but also don’t utilize their intellect.

Neurodiverse employees bring unique skills to the job, Shukla said, like blunt honesty. When the company on-boards one of its 50,000 new employees each year, it sends the new hire instructions to set up their voicemail. “One of the [neurodiverse] individuals said, ‘The instructions are not correct,’” Shukla said. “We didn’t believe it, we said, ‘We give it out all the time to people.’”

But he was right. Thousands of employees, feeling hesitant to say anything, had been wasting time puzzling over the wrong instructions.

People on the spectrum also often have superior problem-solving and hyper-focusabilities, so they excel at finding signals in noisy data.

Medicaid Cuts Would Hurt Disabled Kids in Kansas

In The Politics of Autism, I discuss health care issues and state Medicaid services for people with intellectual and developmental disabilities.

At The Lawrence Journal-World, Peter Hancock reports on the potential impact of Medicaid cuts on Kansas, using the case study of a disabled child named Franklin Fergus.

Statewide, public schools in Kansas receive more than $46 million a year in Medicaid funds to provide those kinds of services to children in a school setting. The Lawrence school district alone receives more than $700,000 in Medicaid reimbursements.

Under standard Medicaid rules, children with severe disabilities like Franklin’s are entitled to receive medical care in an institutional setting such as a nursing home or state hospital.

However, Kansas and most other states operate programs known as “Home and Community Based Services” that allow a limited number of people to avoid institutions and remain in their homes by using Medicaid money to pay for non-medical services, such as the care Franklin receives at home from Govier, and the different kinds of therapy he receives at school.

Jane Fergus said that in his first year of life, the cost of Franklin's care exceeded $3 million. To this day, he requires ongoing medical care, including monthly visits to a children's hospital in Cincinnati where he undergoes an experimental form of chemotherapy — treatment that the Fergus family could never afford on their own.

Jane Fergus' husband, Fred Fergus, works as a teacher at West Middle School in Lawrence. But Jane does only occasional, part-time house cleaning work while spending virtually all of her available time helping to care for Franklin.

What concerns her most about the current health care debate, she said, is that those programs, known as HCBS waivers, are optional services under Medicaid, and thus they could be the first to be cut or eliminated if there are major cuts to Medicaid, which both the House and Senate health care plans propose to do.

Special education services, on the other hand, are not optional. Public schools in the United States are required to provide those services to students in their districts under a separate law, the Individuals with Disabilities in Education Act, or IDEA.

“They’re either going to cut (Medicaid) services or they’re going to cut enrollees,” Fergus said. “They’re going to have to cut something to make it work. All of that’s going to fall back on the states to cover that shortage.”

The Anti-Vax Movement and the Nation of Islam

In The Politics of Autism, I look at the discredited notion that vaccines cause autism.

Previous posts have noted RFK, Jr';s antivax partnership with Farrakhan's Nation of Islam.

At Jezebel, Anna Merlan reports:

In the summer of 2015, Kennedy enlisted the help of the Nation of Islam, a black separatist organization, in his years-long campaign to convince Americans that vaccines cause autism. According to several reports, Kennedy wanted to encourage black families to consider not vaccinating their children, based on a debunked claim that a mercury-based preservative in vaccines causes autism. At the time, Kennedy was trying to stop SB 277, a California bill which eliminated a personal-belief exemption that some parents had used to avoid vaccinating their kids. In April, in promoting an anti-vaccine movie called Trace Amounts, Kennedy referred to vaccine injuries as “a holocaust.”

 ...

[The] Nation of Islam has been anti-vaccine for decades, a skepticism that’s part of a broader distrust of the medical establishment. In the 1960s, according to Farrakhan, the NOI’s most influential leader Elijah Muhammad told his followers not to get the polio vaccine, but said others were acceptable. In 2004, a story in their official newspaper, the Final Call, suggested that vaccines could be linked to health problems from autism to diabetes. By 2013, Farrakhan was claiming children in Zimbabwe were being intentionally poisoned with vaccines from Europe and the U.S., “to limit the population of Black people in those countries and places in the world where America’s needs for their vital minerals and resources were deemed necessary.” (The idea that medicines are part of an effort to poison black people has a lot of traction in the NOI: In his 1965 book A Message to the Blackman in America, Elijah Muhammad said birth control was also a depopulation scheme and a “death plan.”)

The infamous conspiracy site InfoWars has also promoted the bogus theory that vaccines cause autism. 

Autism, Medicaid, and Delaware

In The Politics of Autism, I discuss health care issues and state Medicaid services for people with intellectual and developmental disabilities. Mitch McConnell has postponed the Senate vote on Trumpcare.  One reason for the bill's extreme unpopularity is its impact on Medicaid.

James Morrison reports at Delaware Public Media:

Sen. Tom Carper visited an autism services center in Lewes Friday to discuss how a Senate Republican healthcare plan would impact that organization’s programs.

Carper said the GOP’s proposed cuts to Medicaid could end some of the programs at Autism Delaware that train adults with autism to enter the workforce.

“These programs give adults with autism the skills to earn jobs and create a little bit of of a savings and be a contributing citizen to our society," he said.

It’s estimated the Republican-backed Better Care Reconciliation Act would cut Medicaid funding in Delaware by at least $2 billion over 10 years.

Thirty-Five Percent Less for Medicaid

In The Politics of Autism, I discuss health care issues and state Medicaid services for people with intellectual and developmental disabilities. Mitch McConnell has postponed the Senate vote on Trumpcare.  One reason for the bill's extreme unpopularity is its impact on Medicaid.

From the Congressional Budget Office:

In the Congressional Budget Office’s assessment, Medicaid spending under the Better Care Reconciliation Act of 2017 would be 26 percent lower in 2026 than it would be under the agency’s extended baseline, and the gap would widen to about 35 percent in 2036 (see Figure 1). Under CBO’s extended baseline, overall Medicaid spending would grow 5.1 percent per year during the next two decades, in part because prices for medical services would increase. Under this legislation, such spending would increase at a rate of 1.9 percent per year through 2026 and about 3.5 percent per year in the decade after that.

Evidence on Vouchers

In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act.

Christina Samuels writes at Education Week about studies of voucher programs in Indiana and Louisiana. Voucher students showed no academic gains in their early years of enrollment, and sine lost ground. MORE DETAIL HERE.

The Indiana study tracked a selection of students in grades 3-8 who switched from public to private schools using Indiana's Choice Scholarship Program, the country's largest voucher program. ...

[S]pecial education students in the study performed worse than students in the study as a group; they saw academic achievement losses in English/language-arts as well as in math.

The Indiana voucher program requires that parents of children with disabilities and the private school agree on a "Choice Scholarship Education Plan" that has some similarities to the individualized education program that is required under the IDEA. However, IEPs are much more comprehensive and are intended to meet the student's legal right to a free, appropriate public education.

In the Louisiana research, researchers found that students who participated in the Louisiana Scholarship Program had no statistically significant gains in math or English/language arts after participating in the program for three years... 

• About 13 percent of the voucher applicant pool was students was disabilities, roughly equal to the population of students with disabilities in Louisiana as a whole;

• In the second year of participation in the voucher program, students with disabilities were nearly 50 percent more likely than students who did not get a voucher to lose their disability identification;

• The chance of a voucher student being newly identified as having a disability was slightly lower than the control group rate.

Autism Speaks and ASAN Against Trumpcare

In The Politics of Autism, I discuss health care issues and state Medicaid services for people with intellectual and developmental disabilities. Mitch McConnell has postponed the Senate vote on Trumpcare.  One reason for the bill's extreme unpopularity is its impact on Medicaid.

From Autism Speaks:

ADVOCATES: Keep the pressure on!

The vote on the Better Care Reconciliation Act in the United States Senate has been delayed thanks to advocates like you who wrote to #SaveMedicaid. Autism Speaks has serious concerns with changes the bill would make to Medicaid, the single most important insurance program for people on the spectrum. Please contact your Senators and ask them to ensure that services are not cut for children and adults with autism.

Please SHARE this post with your friends and family and let us know you've contacted your senator in the comments below.

https://act.autismspeaks.org/site/Advocacy?cmd=display&page=UserAction&id=241

The Autistic Self-Advocacy Network is often at odds with Autism Speaks, but they are on the same side this time:

Your advocacy is working. After Senators’ offices began to receive a new wave of calls and protesters, the Senate has postponed their vote on the Affordable Care Act repeal bill. This is a good sign – Senators are worried about how this bill looks to the people they represent. But if there’s one thing we’ve learned from fighting this bill in the House, it’s that we need to ramp up the pressure. The politicians working to repeal the ACA and destroy Medicaid won’t stop, so neither can we.

This week and next week will decide the future of this bill. The other side will be negotiating, making deals, and doing everything they can to persuade more Senators to vote Yes. We need to make sure our voices are louder than the wheeling and dealing happening behind closed doors.

Here’s what you can do:

Call your Senators and tell them to vote NO. We need to keep up the pressure and flood their offices with calls. You can find your Senators’ office numbers at contactingcongress.org, and use our Civic Engagement Toolkit to help you plan your call/

Dangers of Trumpcare

In The Politics of Autism, I discuss health care issues and state Medicaid services for people with intellectual and developmental disabilities.

Mitch McConnell has postponed the Senate vote on Trumpcare.  One reason for the bill's extreme unpopularity is its impact on Medicaid.

Robin Rudowitz writes at Kaiser:

One mechanism to reduce per enrollee costs would be to restrict covered benefits. States could eliminate, restrict the scope or impose new or tighter utilization controls for “optional” services (those not required by statute). All states offer some optional services, including prescription drugs. Adult dental or chiropractic services are key examples of benefits that some states have restricted or eliminated during economic downturns. Nearly all home and community based long-term care services (HCBS) are also an optional service. (Figure 2) Over the last 2 decades, state spending for long-term care has moved from institutional care to home and community based settings. HCBS accounted for over half of long-term care spending by 2013. With restrictions on federal financing, an aging population and statutory requirements to cover nursing home care, states’ ability to invest in HCBS could be strained.

Emma Brown reports at The Washington Post:

The Republican plan for Medicaid is likely to hurt schools in several ways, said Sasha Pudelski, who tracks healthcare policy for AASA. [American Association of School Administrators] Most directly, states may decide to prohibit schools from receiving Medicaid dollars because of what is likely to be stiff competition against doctors and hospitals for limited resources, she said.

Less directly, states struggling to cover healthcare costs now covered by the federal government would have to seek cuts elsewhere in their budgets, including in education, which accounts for a large share of many states’ spending.

“The kids who will be hurt first and foremost are special ed kids and kids in poverty, but then everybody will be hurt, because we’ll have to shift dollars from the general education budget,” she said.

Schools receive less than 1 percent of federal Medicaid spending, according to the National Alliance for Medicaid in Schools. But federal Medicaid reimbursements constitute the third-largest federal funding stream to public schools, behind $15 billion they receive each year for educating poor children and $13 billion they receive to educate students with disabilities under the Individuals with Disabilities in Education Act (IDEA).

Jeff Horseman reports at The Riverside Press-Enterprise:

Under the House bill, California, which spends more than $100 billion a year on Medi-Cal, would have to replace about $24 billion in federal Medicaid dollars by 2027, according to the state Department of Health Care Services.

Caps would vary depending on the type of enrollee and growth in those caps would be indexed to the rate of inflation. But the Senate bill eventually uses a general inflation measure, rather than one tied to medical expenses. That would lead to even deeper Medicaid cuts than the House bill, opponents argue.

While children with disabilities are technically exempt from per-capita caps, “As soon as they turn 19, they would be affected by cut services,” Flory said.

“There are also a number of children who are not categorically disabled but are receiving a high level of services due to trauma, et cetera,” she said.

“I imagine there will be some dispute in which children to exclude from the cap … I just see more pressure and administrative bureaucracy on the horizon to administer this, not funding going to services.”

Medicaid in South Carolina

In The Politics of Autism, I discuss health care issues and state Medicaid services for people with intellectual and developmental disabilities.

In Columbia, SC, Ashleigh Holland reports at WIS-TV:

Palmetto Autism Intervention (PAI) in Columbia is closing on June 30. The center provides therapy like Applied Behavior Analysis (ABA), a treatment many consider critical for those with autism.

The center is one of few that takes Medicaid patients. But they blame the slightly higher reimbursement plan for putting them out of business, saying a rise from $13.58 per hour to $17.28 per hour just isn't enough.

Autism Speaks advocate and parent Lorri Unumb takes up for the treatment center.

"They are people who spend their days sometimes being spit upon and sometimes scratched, and it’s a very, can be a very demanding job. These providers are being reimbursed at such a low rate that they literally cannot afford to serve Medicaid children," Unumb says.

wistv.com - Columbia, South Carolina

Senate Trumpcare Update

In The Politics of Autism, I discuss health care issues and state Medicaid services for people with intellectual and developmental disabilities.

Mitch McConnell has postponed the Senate vote on Trumpcare.  One reason for the bill's extreme unpopularity is its impact on people with disabilities.

Darla Mercado at CNBC:

If you depend on Medicaid to supplement the cost of care for your special needs child, now is the time to reassess your long-term plans.

Some 11.2 million children in the U.S. have special needs — and of these, nearly 5 million rely on coverage from Medicaid and its Children's Health Insurance Program, according to the Kaiser Family Foundation.

Now, funding to those programs is imperiled as the House and Senate debate their health-care bills. The House proposal, the American Health Care Act, would reduce Medicaid spending by $834 billion from 2017 to 2026, according to the Congressional Budget Office.

Meanwhile, under the Senate bill, known as the Better Care Reconciliation Act, federal spending on Medicaid would decrease by $772 billion from 2017 to 2026, according to the Congressional Budget Office. The bill phases out Obamacare's Medicaid expansion program.

Dr. Lynne Williams at The Pittsburgh Post-Gazette:

While Medicaid is the sole health insurance for low-income families, it also serves as secondary insurance for families of all income levels whose children have “medically complex conditions” that require life long specialized health care. Medicaid supports children with cancer, cystic fibrosis, diabetes and autism, among a long list of serious conditions.

With Medicaid funding, children receive ventilators so they breathe, insulin to regulate their blood-sugar levels and behavioral health counseling to help them learn to engage with their families. Medicaid supports kids in school, too, providing additional learning support and therapists.

Thanks to Medicaid, these children receive comprehensive and preventive health care services to keep them healthy and out of the hospital. Without it, many families would face bankruptcy. Or worse, children would suffer and not get the care they need.

The proposed U.S. Senate version of the House’s American Health Care Act has been clear about one thing: Medicaid will be capped and cut. The legislation effectively would transfer all the financial risk to our state government — already running a budget deficit of more than $1 billion — which would be left to its own devices to figure out who gets help and who gets hurt.

Harold Pollack at Slate:

Within the disability community, block grants establish a poisonous zero-sum dynamic across different constituencies that have wildly varying needs and that command very different levels of resources. My own family receives intellectual disability services within Medicaid’s Home and Community Based Services program. Many medically fragile kids do the same, as articulated by Natalie Weaver in this poignant video. Such programs serve many middle-class families with politically potent connections and family stories. Less influential, cute, or cuddly constituencies may be elbowed aside within the Darwinian politics that block grants promote.

These dangers are compounded because BCRA weakens federal oversights. BCRA does require states to offer a basic package of Medicaid services. Yet its 142 pages are notably silent regarding granular details that give these requirements real meaning. These details include how states managed eligibility requirements and waiting lists, how often Medicaid will allow a growing child with cerebral palsy to replace her wheelchair, Medicaid reimbursement levels to specialty physicians, and more. Block grants pressure states to nickel-and-dime patients and providers on each of these matters.

Legal scholar Nicholas Bagley notes that BCRA gives governors breathtaking powers to demand essentially nonrevocable eight-year waivers to alter insurance provision and regulation in their states. The ACA imposes a reasonably stringent process through which the Department of Health and Human Services oversees state waivers. BCRA instead requires the HHS secretary to grant a waiver as long it does not “increase the federal deficit.”

California: "You've got your heart strings and you've got your purse strings"

In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act.

Harold Pierce reports at The Bakersfield Californian:

In 2013, the Kern High School District had 3,173 students with Individualized Education Programs. It's projected to serve almost 1,000 more next year. The Bakersfield City School District saw 64 new autistic students last year, bringing the total number of its special ed students north of 3,100 — a 4 percent increase over the prior year.
...
“We’re drowning,” Roberta Joseph, a speech language therapist at Leo G. Pauly Elementary School said.

Some disabled students cost more to educate than others. But on average, KHSD paid about $19,170 to accommodate each of about 3,800 special education students last year. BCSD educated 3,146 students at $16,326 apiece.
...

“We don’t get to control the funding that comes in and we are obligated, and want, to provide the best services possible to meet student needs,” said Sandy Niday, KHSD’s Special Education Local Plan Area, or SELPA, director.

Next year, KHSD is projecting the state will cover just 31 percent of the cost to teach special ed students, and the federal government less than 10 percent. That leaves KHSD footing the rest of the $73 million bill, or about $44 million, according to Niday.
...

“If parents say we need a communication board and our response is that we don’t have access to it, that’s not OK,” Joseph said, explaining that it leaves the district vulnerable to lawsuits for straying from student individualized education plans. “I wish there were more funds.”

The fact is, “special education goes to the front of the line,” said KHSD trustee Mike Williams, expressing dissatisfaction with the way funding is planned for those students. “It’s taking up a bigger and bigger piece of the pie … and these kids need the help they’re getting. You’ve got your heart strings and you’ve got your purse strings.”

As bad as things are now, school officials fear they will get worse as U.S. Secretary of Education Betsy DeVos has proposed a $113 million cut to federal spending on special education programs.

Waiting In South Carolina

In The Politics of Autism, I discuss health care issues and state Medicaid services for people with intellectual and developmental disabilities.

At The State, Jamie Self reports that there are long Medicaid waiting lists for ABA.

Behind the delay is South Carolina’s lowest-in-the-nation reimbursement rate for the therapy, advocates and providers say.

▪ Rates are so low – $13.58 an hour – that providers are backing out of the program, refusing to take on new patients like Zeph, who are covered by Medicaid, the joint federal-state insurance program for the poor and disabled
▪ A 27 percent increase — to $17.28 an hour — that goes into effect July 1 will leave South Carolina still in dead last, trailing the rates paid by the second-lowest state by about $13 an hour. The national average is $43 an hour, according to Autism Speaks, a national advocacy group.
▪ Making matters worse, an expansion of the program next month to include older patients could add hundreds of children and adults to the list of Medicaid patients awaiting autism treatment.

Of coruse, the problem will get worse if Congress carries out Trumpcare cuts in Medicaid.