Diagnosis Problems for Adults and Children

In The Politics of Autism, I discuss evaluation, diagnosis, and the uncertainty of prevalence estimates.

Lily Altavena at The Detroit Free Press:

It wasn't until Ashley Marchuck started experiencing frequent anxiety attacks at work — almost every day — that she started to suspect she might be autistic.

Working at Starbucks, she was bombarded with loud noises such as the whirr of the coffee machines, the music playing and the conversations among customers. The sensory overload was too much. The anxiety attacks, leaving her sweaty and panicked, wouldn't stop. Marchuck took a leave of absence to figure out what was going on. At 31 years old, she was diagnosed with autism spectrum disorder.

She'd realized that her anxiety attacks were a symptom of sensory issues related to autism, she said.

"It basically takes a mental crisis to get diagnosed," said, Marchuk, now 32. "And that's how it was with me, unfortunately, you know, having those anxiety attacks for months."
...

Brian Calley, former Michigan lieutenant governor and vice chair of the Autism Alliance of Michigan Board of Directors, said identification will expand as early childhood programs expand in the state. And he said pediatricians are conducting more developmental screenings but noted that such screenings won't help vulnerable populations who can't regularly go to the pediatrician's office.

Calley, who is the father of a child with autism, added that society also needs to reduce stigma around the condition. He remembers feeling unsure about seeking a diagnosis at first for his child, fearing what a diagnosis could mean.


"There's still some of that, that happens where people might notice that there's issues challenges, problems, delays, and not ready to seek a diagnosis because of societal stigma," he said.

Calley on Restraint and Seclusion

In The Politics of Autism, I discuss the use of restraint and seclusion, along with cases of abuse.

Brian Calley served as lieutenant governor of Michigan and has long been an advocate for people on the spectrum.   At WP, he writes about restraint and seclusion:

I have a daughter with autism. When I first heard about this practice, I thought it must be rare. But it is shockingly common, having been used against tens of thousands of U.S. students in recent years.

In Michigan alone, where my family resides, restraint and seclusion was used in schools more than 94,000 times from 2017 to 2022. Because there are no penalties issued to schools for failing to report, this number is undoubtedly an undercount. An Education Department analysis covering the 2017-2018 school year (based on self-reporting) showed that more than 100,000 children across the United States had been subjected to these inhumane practices.

...

It was clear this was a major problem. So, my office developed a proposal to ban restraint and seclusion in non-emergency situations. In 2016, I signed legislation that did just that, and that required schools to report to parents and the Michigan Department of Education when the practice was used, so we could track its prevalence. The resulting data revealed a situation that was even worse than I feared.

At the Detroit Free Press, however, Dave Boucher and Lily Altavena report that implementation has not been entirely successful:

While Michigan lawmakers tried to ban the tactics in 2016, a Free Press investigation found educators across the state secluded or restrained students nearly 94,000 times in the last five school years. The state began collecting data in the 2017-18 school year following the passage of new laws.

That means on average, more than 100 times a day, Michigan educators used what experts say are psychologically damaging practices on children. Considering most schools limited or canceled in-person classes for weeks or months due to the COVID-19 pandemic, the daily usage of both seclusion and restraint are likely much higher.

Autism Services: Pay Now, or Pay Later

Uncertainty and complexity are major themes of The Politics of Autism.

At Crain's Detroit Business, Ron Fournier writes about the Autism Alliance of Michigan and its "navigators." who answer the calls of autistic people and caregivers.

Navigators consult in-house specialists in autism education, clinical treatment, insurance and adult services. They refer callers to the cornucopia of uneven services available to people on the spectrum. Their notes go into a database, and they follow up on the callers for weeks, months or years — whatever is necessary.

Michigan legislators might cut state support for the program.

While I have a son with autism and I'm on the Autism Alliance board, this issue is bigger than my personal biases. According to Lt. Gov. Brian Calley, a Republican who has a daughter on the autism spectrum, the GOP legislation would jeopardize a variety of autism programs, as well as state services that improve mental health, combat child lead poisoning, give disabled people opportunities to live independently and that would provide caretakers a small raise.

Calley likes tax cuts and smaller budgets as much as the next Republican, but he considers these proposals to be short-sighted and fiscally foolish. It costs the state far less to give people with disabilities the tools they need to seek some measure of independence, Calley said, than it does to provide for them for life.

"If we get it right early, the long-term outcomes are better and more efficient. In other words, cheaper," Calley told me in a telephone interview.

A consistent theme in autism policy is very simple:  pay now, or pay later. 

Fournier Talks to Calley

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.

At Crain's Detroit Business, autism dad Ron Fournier talks to another autism dad, Brian Calley, the lieutenant governor of Michigan:

You have an opportunity here to talk to the influential folks who read Crain's publications. What would you say to a businessperson to convince them that hiring people with different brain wiring isn't just a nice thing to do, but there's actually a return on investment?

I am very careful to reject the notion that this is … charity, because that is not at all what I'm talking about. This is an effort to treat people who have a neurological difference the same way we would anyone else. You hire people that are well-suited for the job.
Ford's recent experience with … a pilot (program) is now being expanded, because they had difficulty in certain high-tech positions — in finding the right people to fill those jobs and there are people with autism filling those jobs today. There are examples across the different forms of employment, from the type of jobs that are entry-level all the way through to complicated jobs. People are excelling (at their jobs) because they have mostly been given a chance to prove what they were able to do.

Restraining Seclusion and Restaint in Michigan

In The Politics of Autism, I discuss the use of restraint and seclusion.

A release from the Office of the Governor of Michigan:

The use of non-emergency restraint and seclusion practices will no longer be allowed in Michigan schools under legislation signed today by Lt. Gov. Brian Calley.

“By putting an end to non-emergency restraint and seclusion in our schools, we are showing kids that their safety and their academics matter to us,” Calley said. “This legislation is a great safeguard for our kids that will help them grow and thrive instead of the archaic and barbaric practices of the past that made school an unsafe place for children.”

Calley signed the bills at an inclusion rally in Troy where he was joined by nearly 300 special education advocates.

House Bills 5409-5417 resulted from recommendations of Gov. Rick Snyder’s Special Education Reform Task Force that was chaired by Calley. The nine-bill bipartisan package was sponsored by state Reps. Frank Liberati, Christine Greig, Amanda Price, Hank Vaupel, Jim Tedder and Kurt Heise.

Under the legislation, restraint and seclusion practices may only be used if a child is a danger to themselves or others. The bills also require any use of restraint and seclusion to be reported both to the parents and the Michigan Department of Education, as well as requiring additional training for school personnel on how to handle behavioral situations.

The legislation codifies the current State Board of Education policy regarding appropriate usage of restraint and seclusion practices into law.

The bills are now Public Acts 394-402 of 2016.

Article V Section 26 of the Michigan Constitution gives authority to the lieutenant governor to sign legislation when the governor is out of state.

For more information on this and other legislation, visit www.legislature.mi.gov.

Calley and the Michigan Mandate

At The Detroit News, Marianne Udow-Phillips and Dr. John F. Greden write:

It will take leaders like Lt. Gov. Brian Calley, who are willing to speak up about their personal journey, to move public policy in a way that will make the difference for the more than 1 million people in Michigan who suffer from other depression, bipolar illnesses and other mental disorders.

In 2012, Michigan passed significant legislation to expand insurance coverage for children with autism spectrum disorder, a group of developmental disabilities that can impair a person’s behavior and social and communication skills. A little more than two years later, it appears that implementation of the legislation has challenges—but also considerable promise—for achieving its goals.

While it is too early to see the legislation’s full impact, there are important lessons in the law’s passage for mental health advocates who want public policy to go beyond autism according to a recent report from the Center for Healthcare Research & Transformation, “Autism Spectrum Disorder in Michigan.”

The debate on autism coverage had been an active and contentious one when Gov. Rick Snyder was first elected governor in the fall of 2010. Bills to expand coverage for autism spectrum disorder were considered and defeated in 2010 because of cost concerns expressed by health plans and groups representing employers.

The legislative climate changed, however, when Snyder assumed office in January of 2011 because a father with a young daughter with autism also assumed an accompanying legislative leadership position that year.

Lt. Gov. Calley, who had long advocated for expanding autism services, served as a powerful advocate for finally moving this legislation forward—a key missing piece in advocates’ efforts to broaden the legislation past autism.

TV Report on Michigan Mandate

In Michigan, WEYI reports on the state's insurance mandate and interviews Lieutenant Governor Brian Calley, an autism dad and supporter of the legislation:

Michigan Plan

A release from the Michigan Department of Community Health:

Today, Mar. 18, the Michigan Department of Community Health (MDCH) and the Michigan Autism Council released the Michigan Autism Spectrum Disorders (ASD) State Plan. This plan represents another major step to addressing the many needs of the 16,000 students with ASD in our public school system and the 50,000 individuals and their families living with ASD in our state.

"Today marks another significant day for Michigan and our efforts to help families and individuals with autism," said Lieutenant Governor Brian Calley. "It was an honor to sign the autism insurance legislation last year and I'm glad to see that our efforts have not stopped there. We have a great opportunity in front of us with this plan. I'm eager to see the progress Michigan will continue to make."
...
The key focus areas identified in the Michigan ASD State Plan are:

• Infrastructure: System, Service, and Resource Coordination
• Family Engagement and Involvement
• Early Identification and Intervention Services
• Educational Supports and Services
• Adult Supports and Services
• Physical, Mental, and Behavioral Health Care
• Training and Professional Development

The development of the plan included identifying current best practices in supporting individuals with ASD of all ages, reviewing current practice in Michigan across key priority areas, identifying gaps between best practice and current practice in Michigan, and making recommendations for improving services and outcomes. The ultimate goal of this plan is to guide future planning, decision making, and resource allocation to meet the needs of individuals and families living with ASD.

For more information about Michigan's efforts to address autism and to view the Michigan ASD State Plan, visit www.michigan.gov/autism.

Michigan Mandate to Take Effect

MLive reports:

Michigan’s autism insurance mandate officially kicks in on Monday.

Lt. Gov. Brian Calley, whose daughter has autism, signed a bipartisan package of billsin April requiring insurers to offer coverage for autism treatment and diagnosis.

It takes effect on Monday, but there will be a grace period allowing insurers to begin programs at the start of their next plan year.

“This new law means that Michigan is well on its way to going from being one of the worst 10 states to raise a child with autism to being one of the best,” Calley said in a statement.

State regulators launched a website for the Autism Coverage Reimbursement Program. The fund, which received a $15 million appropriation for its first year, will reimburse eligible health insurance companies and third-party administrators for paid claims tied to autism treatment and diagnosis.

Medicaid, Insurance, and Michigan

MLive reports:

Medicaid would cover certain treatments for autism under a budget proposal that soon will be voted on in the Michigan Legislature.

The bill was one of many approved Tuesday by joint panels made up of lawmakers from the House and Senate. Bills still need approval from the full Senate and House, along with Gov. Rick Snyder, before they can become part of the state’s spending plan for the fiscal year that starts Oct. 1.

Lawmakers are likely to take final votes on budget bills this week. They appear to be following a framework agreement reached last week between the Republican governor and Republican leaders of the GOP-controlled Legislature.

The autism coverage is included in a budget bill for the Department of Community Health. It would extend coverage through Medicaid to qualifying children 18 and under. That’s expected to cost about $21 million, with roughly $7 million coming from the state's general fund.

The move comes after state lawmakers earlier this year approved requiring insurance companies to offer coverage for certain autism treatments. That legislation was backed by Lt. Gov. Brian Calley, who has a daughter with autism.

Sue Thoms writes at The Grand Rapids Press:

With insurance coverage now required for intensive therapy for autism, therapists hope to see a surge of children starting treatment this fall, says a Hope Network therapist.

“We’re excited about it,” said Elyse Wiseman, a behavior analyst at Hope Network’s Center for Autism. “Families have been dying to get treatment, but it hasn’t been an option.”

The long-term effect of the treatment mandate approved by state lawmakers in April will be seen in better quality of life, less need for special education services and better job and income potential for people with autism, she said.

Michigan Mandate Becomes Law: It's Personal

MLive reports:

Lt. Gov. Brian Calley said he became an advocate for expanding care for autism patients after some families struggling to find help for their children came to his office.

But nearly three years later, it became personal.

“I was at a Heath Policy Committee hearing, and I heard testimony about what it was like from a boy who had received treatment as he described himself before he had access to treatment,” Calley said.

“And my wife and I, we knew we were having such difficulty with our daughter, and we had a hard time getting anybody to help and figure out what the problem was. It became clear at that point that what they were describing was how she was.”

Surrounded by his family and others with children diagnosed with the disorder, Calley on Wednesday signed into law a bipartisan package of bills making Michigan the 30th state to mandate insurance companies provide coverage for autism treatment and diagnosis.

Calley was pressed into service to sign the bills because Snyder is in Afghanistan visiting troops.

AP reports:

Lawmakers gave final approval to the measures last month, and both Republicans and Democrats who worked on the legislation said it was the plight of families trying to pay for their children's treatment that made the legislation so critical.

"When things are personal, you work a lot harder," said Democratic Sen. Rebekah Warren of Ann Arbor. [emphasis added]

Last month, Calley testified on the legislation:

Michigan Mandate Passes

The Detroit Free Press reports:

Insurers must provide coverage for therapy for Michigan's autistic children beginning Oct. 1 as part of a package of bills passed Thursday by the Michigan Legislature.

The bills, which are expected to be signed by Gov. Rick Snyder, also create a state fund to reimburse insurers for treatment costs.

"This is a big day," said David Meador, executive vice president and chief financial officer for DTE Energy. His 15-year-old daughter, Maribel, is autistic.
...
Advocates for the insurance mandate had failed in several earlier attempts to win legislative approval, largely because of opposition from business groups opposed to insurance mandates and worried about costs.

But the campaign built significant momentum in the last year with backing from Snyder and Lt. Gov. Brian Calley, who has an autistic daughter. The autism bills were approved Thursday with broad bipartisan support.

They passed with a 91-19 vote in the House and 30-8 in Senate.

The Detroit News reports:

In Michigan, about 15,000 children and teens are diagnosed with autism disorders. Autism is diagnosed by making judgments about a child's behavior; there are no blood or biologic tests. Its cause remains a mystery.Calley said passage of the bills will benefit not only families but the state of Michigan. The state will realize $13 billion to $15 billion in savings over the lifetimes of children who will now be able to receive therapies needed to reach their full potential, he said.

"We know that half of (children with autism) can reach independence, reach typical function," Calley said.

Calley championed the three-bill autism package as the father of a small daughter with autism.

"This will benefit other families much more than mine," Calley said. "I'm in a fortunate position to have resources and connections, to be (among) the 1 or 2 percent of families in Michigan that have access to therapy.

"The vast majority (can't afford treatment) so they get this diagnosis and they don't get the therapy they need. That's why you see divorces and why families with autism are much more likely to be in poverty."

Michigan Mandate to Move to House Floor

The Detroit News reports on Michigan mandate legislation:

"There seems to be an effort to speak ill of federal health insurance mandates while at the same time we're having conversations of state-level mandates," said Dave Jessup, director of government relations for the Small Business Association of Michigan, which opposes the autism bills. "A mandate is a mandate whether it be a federal mandate or a state mandate."

The House Families, Children and Seniors Committee on Tuesday passed  Senate Bills 414, 415 and 981 after lowering the amount the state would reimburse insurers and third-party administrators annually for certain autism therapies.

Lt. Gov. Brian Calley, a Republican whose daughter has autism, said a mandate is necessary to stop a brain drain of autism specialists who get trained in Michigan but move to states with insurance mandates. [emphasis added]

...

"We have no idea how much it's going to cost," said Sen. Phil Pavlov, R-St. Clair Township, who voted against the bills. "It's wide open."

There are an estimated 15,000 children in Michigan with some form of autism, but not all children will require the expensive one-on-one speech and occupational therapy that bankrupts some families, Calley said.

"It doesn't really make sense to expect utilization will always be capped out," Calley told the committee.

The legislation is drawing opposition for different reasons. Business groups oppose the individual mandate, fearing it will drive up insurance premiums on top of new regulations in the federal health care reform law being argued before the Supreme Court this week and open the door to new mandates in the future.

"The question is: 'How do you say yes to some (mandates) and no to others?'" asked Wendy Block, health policy director for the Michigan Chamber of Commerce.

Action in the Michigan Senate

MLive reports:

Lawmakers said a package of bills requiring autism diagnosis and treatment coverage shouldn't be considered a mandate on insurers, but a “moral public responsibility.”

A series of bipartisan bills sailed through the state Senate’s Health Policy Committee on Thursday with support from both sides of the aisle.
But Democrats and Lt. Gov. Brian Calley – a strong advocate of the package – said the bills are only a first step, and that coverage should someday be extended to other forms of brain disorders.

“This was a time when both parties could rise above the rhetoric and do the right thing for Michigan’s kids,” Calley said after the committee vote. “It’s a good day, and a good first step.”

None of the senators voted against any of the bills, thought Rick Jones, R-Grand Ledge, passed on voting for two because he disagreed with some language.

The bills -- SB 414, 415 and 981 -- would require insurers to cover an autism diagnosis and treatment. They would also direct the state Licensing and Regulatory Affairs Department to create an autism coverage incentive program through which insurance carriers and third-party administrators could seek reimbursement for paid claims.

The bills, sponsored by Sens. Tupac Hunter, D-Detroit, Mike Green, R-Mayville, and Majority Leader Randy Richardville, R-Monroe, are estimated to cost about $15 million a year at first, and supporters said 29 states have similar laws.
The two days of hearings included testimony from high-profile supporters, including Richardville and Calley, who has a daughter with the disorder.

Michigan Mandate

AP reports:

Democrats in the Michigan House are renewing calls for a law requiring insurance companies to offer coverage for certain autism treatments. Lawmakers held an event at the state Capitol on Wednesday to ask Republicans who hold the majority in the Legislature to pass an autism treatment bill. Some Republicans, including Lt. Gov. Brian Calley, have supported proposals to require insurance coverage for some autism treatments. But the measure is opposed by business and insurance groups that say mandating coverage would raise the cost of employer-sponsored health insurance.

Michigan Governor Backs Mandate

Previous posts have noted the autism efforts of Michigan Lieutenant Governor Brian Calley. This past week, the governor joined in. WWJ in Detroit reports:

As part of his bold plan for a healthier Michigan, Governor Rick Snyder wants to mandate that insurers cover treatment for autistic children.

One of Lt. Gov. Brian Calley’s children suffers from autism, but his efforts to push through legislation requiring the coverage have failed in the Senate. Snyder said “it’s time” for Michigan to join the 27 states that require insurers to cover the disorder.

Autism Speaks spokesman Rick Remington told WWJ Newsradio 950 that 27 states now offer such coverage.

“Unfortunately, in Michigan and in a number of other states that do not provide insurance coverage, many children with autism have not been getting treatment. So, it could make a big difference in their quality of life,” Remington said.

Remington said an estimated 15,000 children in Michigan are autistic and early treatment can actually save the state money in the long run.

Remington said he hopes the state legislature acts quickly to approve the governor’s plan.

“The cost for parents without any insurance coverage can reach $50,000 or more a year,” he said. “Without that coverage and without the resources, many parents unfortunately cannot give their children the treatment that they need.

Brian Calley

The Detroit Free Press profiles Michigan Lieutenant Governor Brian Calley:

Calley said his family and his Baptist faith are what truly define him, not politics. He and his wife have three children, all with Irish names -- Colin, 7; Reagan, 4, and Karagan, 16 months.

When Reagan was diagnosed with autism, Calley led an effort in the Legislature to require insurance companies to cover autism treatments. It's not a typically conservative cause -- more government control of private insurers.

The bill failed. But his daughter's autism sensitized him to the plight of other families. He said his family spends $20,000 a year for Reagan's therapy.

"My daughter is one of the fortunate few that has access to all the things she needs to in order to develop appropriately," he said. "Most parents of kids with autism have no hope whatsoever in accessing these sorts of things."

Insurance in Michigan

The Detroit News reports:

Autism legislation passed by Democrats in the state House but once dead in the water in the Republican-controlled Senate will get a second look Tuesday after pressure from Michigan's lieutenant governor-elect, Rep. Brian Calley of Portland, whose daughter is diagnosed with the complex neurobiological disorder.

The House legislation would require insurance companies to cover autism therapies, which can cost as much as $50,000 annually. According to the Autism Society, 23 states have adopted similar reforms.

Calley released an emotional YouTube video this week [see November 23 post] in which he vows he "will no longer remain silent" on the need for autism insurance reform, which he says can save the state money.

Matt Marsden , spokesman for Senate Majority Leader Mike Bishop , said the issue will get a hearing — at which Calley will speak — before the Senate Republican Caucus next week.

Sen. Randy Richardville , the majority leader-elect who co-chaired hearings on autism last summer, said the House-passed legislation is unacceptable because it mandates insurance coverage. He wants to look at alternatives, such as riders on insurance policies, and would impose dollar limits on the cost of care.

Also see:

• Detroit News editorial against the mandate
• October hearing
• Article by David Meador
• June hearing

Michigan's Incoming Lieutenant Governor is an Autism Dad