Medicaid Cuts and Disability Services

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

At NPR, Alison Kodjak reports on Our Place Day Services, a day center for adults with disabilities, in Slinger, Wisconsin.

"We help men and women become the men and women they were meant to be," says Donna Ellenbecker, director of Our Place.

But she's worried about the Republican plan to overhaul Medicaid.
\
All but one of her 33 clients pay for their classes and care at Our Place with Medicaid dollars. Wisconsin's Medicaid system includes a program called IRIS that grants people with disabilities a budget, based on their level of need, to use for services that help them live in the community.

The state's approach is part of a national trend in recent decades to move people with severe developmental disabilities out of institutional settings by providing the support they and their families need to live more independently – either with their families, in community-based group homes or even on their own.
...

Ellenbecker worries that if the current Republican plan is passed, or the kinds of budget cuts Trump is proposing go through, the money for those support services just won't be there.

"It's a 25 percent cut you know, and a 25 percent cut it is going to affect these programs," she says. "There's no way that a 25 percent cut can come out of any other program — except long-term care."

That's because many support services are considered optional under the law that governs Medicaid. So, if state lawmakers are forced to choose between say, job coaches, and traditional medical care, the job coaching is likely to lose out.

Study Finds that Inclusion Works

In The Politics of Autism, I write about special education and inclusion.

The National Center for Analysis of Longitudinal Data in Education Research (CALDER) finds in a new report that inclusion works. The abstract:

We use longitudinal data on all high school students in Washington State, including postsecondary education and workforce outcomes, to investigate predictors of intermediate and postsecondary outcomes for students with disabilities. We pay particular attention to career and technical education (CTE) enrollment and the extent of inclusion in general education classrooms, as prior research suggests these factors may be particularly important in influencing the outcomes of students with disabilities. We
estimate models that compare students with other students within the same school district, who are receiving special education services for the same disability, and have similar baseline measures of academic performance and other demographic information. We find generally weak relationships between CTE enrollment in any particular grade and intermediate and postsecondary outcomes for students with disabilities, though we replicate earlier findings that students with disabilities who are enrolled in a “concentration” of CTE courses have higher rates of employment after graduation than
students with disabilities who are similar in other observable ways but are enrolled in fewer CTE courses. We also find consistently strong evidence that students with disabilities who spend more time in general education classrooms experience better outcomes—fewer absences, higher academic performance, higher rates of grade progression and on-time graduation, and higher rates of college attendance and employment—than students with disabilities who are similar in other observable ways but spend less time in general education classrooms. [emphasis added]

Medicaid Cuts and the Senate

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

From Mike Wasmer, director of state government affairs at Autism Speaks:

The Senate is currently considering the American Health Care Act. Autism Speaks has serious concerns with the changes the bill makes to Medicaid, the single most important insurance program for people on the spectrum. Please contact your Senators and encourage them to make Medicaid work for people with autism.

Contact link here:  
https://act.autismspeaks.org/site/Advocacy?cmd=display&page=UserAction&id=237

Alan Fram reports at AP:

President Donald Trump told Republican senators Tuesday that the House-passed health care bill is "mean" and urged them to craft a version that is "more generous," congressional sources said.

The president's comments, at a White House lunch with 15 GOP senators, came as Senate Republican leaders' attempts to write their own health care package have been slowed by disagreements between their party's conservative and moderates.

Trump's remarks were a surprising critique of a Republican-written House measure whose passage he lobbied for and praised. At a Rose Garden ceremony minutes after the bill's narrow House passage, Trump called it "a great plan."

Different Views on Law Enforcement Training

In The Politics of Autism, I discuss interactions between police and autistic people. 

Florida has enacted legislation requiring autism awareness training for law enforcement officers. Sascha Cordner reports at WUSF:

“So, I’ve been an advocate for over 20 odd years. I have a child with autism and I know that if a police officer would have stopped him and started pelting questions at him, our kids, their executive functioning just shuts down,” said Victoria Zepp with the Florida Coalition for Children. “They would say anything. They would parrot. They would do things.”
...
But, some, like Tallahassee Police Chief Michael DeLeo, are a bit skeptical about the new law.
...
DeLeo says the issue is personal for him since he has family members and friends with autistic children. He says while he was a South Florida officer, he also responded to multiple situations with autistic kids.

“So, I get the issue,” DeLeo added. “But, it’s very easy for the legislature to say, ‘Hey, we’ve addressed the issue because we said law enforcement’s got to take a four-hour class.’ That doesn’t fix the true issue. What it did it now creates an expectation that because our officers went to a four-hour class, it’s going to make it all better. But, we haven’t fixed the issue. We’ve dressed it up. We’ve put some wrapping on it. But, what we really need to be doing is to find out who is the best group of people with the right skillset to see it coming, intervene appropriately, and if we need to be there in a supporting role, that’s what we should be doing. But, we are not the best agency to be solving that.”

Still, Matt Puckett with the Florida Police Benevolent Association—which represents thousands of officers—says DeLeo doesn’t speak for all law enforcement.

“I don’t think it’s feel-good legislation,” he said. “I think it’s important legislation. I think that’s an incredibly insensitive statement for the police chief to make. If you talk to anybody who’s parent of a child with autism, that incident in Miami was their worse fear, their worst nightmare. SO, to better train officers on how to handle dealing with someone who’s on the spectrum to at least notice the signs…if we did nothing, but just that, we’re at least making some progress.”

Medicaid and IDEA

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

Social worker Vivienne Selia has a letter in the Pittsburgh Post-Gazette:

As a social worker, I have worked with individuals with various disabilities and their families for more than 20 years and have seen the importance of Medicaid dollars to the well-being of children and families.

For those children and young adults between the ages of 3 and 21 who are in school, IDEA (the Individuals with Disabilities Education Act passed in 1975) ensures that they will receive an appropriate education. Very often that will include a need for one or more therapies (speech, occupational, physical, behavioral) and/​or individual aides or nursing care so that the person can learn to his or her best ability. Medicaid pays for many of these services. Most school districts could not manage to provide these services without drastically cutting other programs. In Pennsylvania, many districts are still trying to recover from Gov. Tom Corbett’s education cuts and do not have the thousands (or millions) of dollars necessary to pay for all the services mandated under IDEA.

IDEA also calls for early intervention services for children birth to age 2. If parents (or the rest of us) want children to have a chance at a productive life or life itself, Medicaid is needed. It helps to pay for services for premature babies and those born with special needs. Costs can be enormous and lifelong.

We have come a long way in helping to provide for people with disabilities, and now it appears that we are on the brink of going backward.

Fear

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

At NPR, science journalist Erik Vance has insights into the fear underlying the bogus theory.  He discusses "nocebos," which happen something unhealthy happens to a body, solely based on the person's belief.

Scientists have found that nocebos are easier to create than placebos, and last longer. So fear is more powerful in the body than hope. Saying "fear is a powerful thing" is a little like saying "money can come in handy" – it kind of undersells it. Fear is the number one tool for selling newspapers, insurance, snake-oil medicine and Swedish cars. Sometimes that's a good thing and sometimes it's not. It's what kept our ancestors alive for millions of years and its history's favorite way of selling political ideology.

So it's not surprising that fear forces people to accept some strange ideas about medicine. The most tragic and extreme of these are cancer patients so terrified of modern cancer therapies that they turn towards more "natural" solutions and shun proven treatments that could have saved their lives.

I would gladly suffer a few rounds of chemotherapy to prevent harm from coming to my child. The bottom line is that what happens to me when I go in for my kid's shots has nothing to do with vaccines or mercury or thimerosal or any science whatsoever. It's about fear and a loss of control.

 Maybe I've done one too many stories on autism and crossed some kind of threshold. That's how I ended up sweating when in the doctor's office again two weeks ago, waiting for the 18-month vaccination that would protect him from diphtheria, meningitis, whooping cough and tetanus. Here I was again, deeply ashamed yet still wondering if we should put off the shot until it was "safe."

"Afraid to Die"

In The Politics of Autism, I write:

When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. ... People in the disability community refer to this point in life as “the cliff.” Once autistic people go over the cliff, they have a hard time getting services such as job placement, vocational training, and assistive technology. IDEA entitles students to transition planning services during high school, but afterwards, they have to apply as adults and establish eligibility for state and federal help. One study found that 39 percent of young autistic adults received no service at all, and most of the rest got severely limited services.

Parents of aging autistic people often say "I can't die."

Michigan Radio reports on disability services in the state:

For parents of children with disabilities, this is a deeply personal issue. Many of them, like Bob White and Gail Marsh, work hard to advocate on their children's behalf so that they can get the mental health services they need to lead healthy, happy and productive lives. They both joined Stateside to talk about their struggles and successes with the state's mental health care system and why they are worried about the prospect of changing the system their children rely on.

White is the father of two sons who are on the autism spectrum and he lives in Clarkston, and Marsh is the mother of an adult daughter who has Down Syndrome and she's from Grand Rapids....

"My wife and I are afraid to die," White said while fighting back tears. "Every year, we as parents, we aren't going to be around to advocate on their behalf. To make the trips to Lansing, to go to the meetings. We have to come up with something that's more sustainable so that we have the confidence that when we're not here, that our two guys, Gail's daughter and others like them, are going to be taken care of."

Gail echoed those sentiments. "I said that to the group of 135 persons at the Section 298 work group, I told them that myself and other families that I'm aware of, we have a confession, like Bob, are hoping that our sons and daughters don't live longer than we do because we can't trust that there's a system that's going to take care of them."

Americans with Disabilities: Data

In The Politics of Autism, I discuss the  civil rights of people with autism and other disabilities. 

From the Census:

On July 26, 1990, President George H.W. Bush signed into law the Americans with Disabilities Act, which prohibits discrimination against people with disabilities in employment, transportation, public accommodations, commercial facilities, telecommunications, and state and local government services.

This Facts for Features provides a demographic snapshot of the U.S. population with a disability and examines various services available to them. The statistics come from various Census Bureau censuses and surveys, covering differing periods of time.

Population Distribution

56.7 million  The number of people in the United States with a disability in 2010, representing 19.0 percent of the civilian noninstitutionalized population. People with a disability have a physical or mental impairment that affects one or more major life activities, such as walking, bathing, dressing, eating, preparing meals, doing errands alone or doing housework. A disability can occur at birth or at any point in a person’s life.
Source:
Americans With Disabilities: 2010
How Common Are Specific Disabilities by Age?
Percentage of civilian noninstitutionalized population

15.7 million The number of people age 65 and older with at least one disability, according to data collected from 2008 to 2012, which makes up 39.0 percent of the population in this age group. Of this group, two-thirds had difficulty in walking or climbing stairs. The second-most cited disability was difficulty with independent living, such as visiting a doctor’s office or shopping.
Source:
Older Americans With a Disability: 2008-2012

...

14,060 The number of business establishments that provided pet care (except veterinary services) in 2012. These businesses generated revenues of $3.4 billion. Among these businesses are those that train assistance dogs.
Source:
2012 and 2007 Comparative Economic Census Geographic Area Series (NAICS 812910)

25,964 The number of business establishments primarily providing services for the elderly and persons with disabilities in 2012. These establishments provided for the welfare of these individuals in such areas as day care, nonmedical home care or homemaker services, social activities, group support and companionship. These businesses employed 901,359 workers and generated $34.1 billion in revenues. In 2015, these businesses generated $40.7 billion in revenues.
Source:
2012 Comparative-Economic Census Geographic Area Series (NAICS 624120) 2015 Service Annual Survey (NAICS 624120), Table 2

7,832 The number of business establishments providing vocational rehabilitation services in 2012. These businesses employed 312,659 people and generated revenues of $12.4 billion. In 2007, there were 7,631 such establishments, employing 303,713 people and producing revenues of $11.5 billion. These businesses provide job counseling, job training and work experience to people with disabilities.
Source:
2012 and 2007 Comparative Economic Census Geographic Area Series (NAICS 624310)

...

 Specific Disabilities

Note: All statistics in this section come from the 2015 American Community Survey, measuring the civilian noninstitutionalized population.

http://factfinder.census.gov/bkmk/table/1.0/en/ACS/15_1YR/S1810

...
12.9 million The number of people age 18 and older in 2015 who had serious difficulty concentrating, remembering or making decisions due to a physical, mental or emotional condition. Among people age 65 and older, 4.2 million had serious difficulty concentrating, remembering or making decisions.

14.2 million The number of people age 18 and older in 2015 who had difficulty doing errands alone, such as visiting a doctor’s office or shopping, due to a physical, mental or emotional condition. Among people age 65 and older, 6.9 million had difficulty doing errands alone.

7.5 million The number of people age 18 and older in 2015 who had difficulty dressing or bathing. Among people age 65 and older, 3.8 million had difficulty dressing or bathing.

Earnings

$21,572 The median earnings in the past 12 months for people with a disability. This is 69.0 percent of the median earnings, $31,872, for those without a disability. (Both figures pertain to the civilian, noninstitutionalized population age 16 and older, with earnings in the past 12 months.)

Mobility

Note: The source for the statistics in this section is Desire to Move and Residential Mobility: 2010-2011, which come from the Survey of Income and Program Participation.

12.5% The percentage of householders with a disability who desired to move to another residence, higher than the corresponding figure of 8.2 percent for those without a disability. Those with mental disabilities were the most likely to desire to move (20.6 percent).

17.3% The percentage of householders with a disability who desired to move to another residence and actually did so over a one-year period.

9.3% The percentage of all householders with a disability who moved to another residence over a one-year period.

Measles, Minnesota, and Texas

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

Dr. Lindy McGee, chair of the advocacy committee for the Immunization Partnership, writes at The San Antonio Express-News:

About six years ago, a Texas resident visited Minnesota three times to talk with its Somali community. Not just any Texas resident: This was Andrew Wakefield, the doctor disgraced for his fraudulent 1998 study claiming a connection between autism and the measles vaccine.

Dozens of studies have since proven Wakefield wrong, but scientific fact hasn’t stopped him from continuing to spread harm.

That harm is very real and obvious today. Continued targeting of Minnesota’s Somali community led the vaccination rate to plummet by more than half, to 42 percent, in 2014. And recently, 69 Minnesotans, most of them young children, most of them Somali, almost all of them unvaccinated, fell sick with measles.

...
Texas is, unfortunately, one of the strongholds of anti-vaccine sentiment, perhaps not surprising considering Wakefield lives in our midst. State lawmakers have refused to take even the most basic steps to fend off a Minnesota-like scenario. Bills died this legislative session that would have allowed parents to view the vaccination rates at individual public schools — would you want your child attending a school with a 42 percent immunization rate? — and that would have had parents take a simple online course to educate them about immunization before they could send their children to school unvaccinated.

The Importance of Medicaid

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

Today is Medicaid Day of Action. Across the country, Americans are protesting Trumpcare cuts to Medicaid.

Details here.

At NPR, Alison Kodjak reports on an autism family in Glendale, Wisconsin:

While Medicaid is best known as a health care program for poor people, more than 80 percent of its budget goes to care for the elderly, the disabled and children, according to the Kaiser Family Foundation. Only 15 percent goes to health care for able-bodied adults.

The program has been growing in recent years and it now makes up almost 10 percent of federal spending. That's why it's the number one target in President Trump's proposed budget, and figures prominently in the Republican proposal to replace the Affordable Care Act. Some estimates suggest the program could be cut by more than 1 trillion dollars over 10 years.

After three years of intense therapy, Ben now goes to his local public school and works on grade level in math and English. He no longer works with his private therapist or uses Medicaid benefits.

"We just decided not to reapply," Nancy says. "The need had been met."

President Trump and Republicans in Congress have proposed massive cuts to Medicaid's budget over the next decade, and Nancy and Dan Gapinski worry that the services they used for Ben won't be there if he needs them in the future, or be there for other families.

"I don't know what Ben will need in his lifetime," Nancy Gapinski says. "Our goals for him are very much like our goals for our daughter Zoe. We really want for them to be active, engaged citizens.

"In Idaho Falls, ID, Bryan Clark reports at The Post-Register:

More than 100 people rallied Monday in front of the offices of Rep. Mike Simpson and Sen. Mike Crapo. They were there to protest proposed cuts to Medicaid under the American Health Care Act, which recently passed the House but has yet to be taken up by the Senate. Both Simpson and Rep. Raúl Labrador voted for the bill.

The bill is projected to leave tens of millions uninsured while achieving small deficit reductions and large tax cuts for high-income households.
...
Holly Giglio is the mother of an 18-year-old boy with Down’s syndrome and autism. He, too, is nonverbal. Giglio said despite her family earning a good income, many services her child needs, including services in school and therapy, would be unattainable without Medicaid.

“My husband works at the site,” she said. “My husband makes decent money. We have excellent health care. But we needed Medicaid.”

James Steed, a member of the Idaho Council on Developmental Disabilities who is himself disabled, blasted the AHCA as a measure that would do great harm to people like him.

“Eight-hundred billion dollars — that’s what they want to take away from Medicaid,” Steed told the crowd. “That takes away people’s ability to live on their own. … That takes away the possibility of them living a life free, with choice and control of their own lives.”

The AHCA is, in fact, projected to cut $834 billion from Medicaid over the next decade.

Medicaid Day of Action: June 6

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

From the Autistic Self Advocacy Network:

Medicaid Day of Action on June 6th

Many groups around the country have been organizing events to defend health care in America. Now, we’ve all joined forces to declare June 6th a national Day of Action to #SaveMedicaid – and we need YOU to get in on the action. Here’s how you can get involved:
Join a rally.
If you’re in the DC area, there’s a rally planned for 11:30am. Find out more details here.
Not in DC? Click here to find out about rallies planned in other parts of the country.
If you can’t attend a rally, don’t worry – there are many other ways you can take action that are just as important. We need to get our message across to Congress in as many ways as possible. Here’s what else you can do:

Call your Senators.
You can find your Senators’ contact information by entering your ZIP code at contactingcongress.org. If you find it easier to leave an answering machine message than to talk to a staffer on the phone, you can call after work hours, and your message will still be counted. If you don’t speak, you can call using your AAC device, or get a friend to call in and read your message. No matter how you do it, your call is criticalright now. Here’s a script you can use:

Script for calling your Senators

My name is [your full name]. I’m a constituent of Senator [Name], and I live in [your town]. I’m calling to ask the Senator to protect Medicaid. Specifically, I want the Senator to promise to vote against any bill that converts Medicaid into a per capita cap, including the potential ACA repeal bill. Per capita caps mean huge cuts to Medicaid that would cause many of your constituents to lose health care, and eliminate vital services that people with disabilities rely on to live in the community. Capping Medicaid will have a devastating impact on the lives of people with disabilities like [me/ my family member/ my friends]. We’re counting on you to do the right thing. Please tell the Senator to stand up for people with disabilities and save Medicaid!

Use the power of social media.

On June 6th, we want to see the #SaveMedicaid hashtag on every social media platform. After you’ve called your Senator, print out a “#SaveMedicaid because…” sign, fill it out & take a selfie with it, and share! Make sure to use the #SaveMedicaid hashtag so we can see it and share it as well. You can also tweet it at your Senators to remind them of your story and encourage others to take action.

No matter how you participate, we need everyone to take action on June 6th. Congress represents us, the people — and this affects all of us. On June 6th, we’re going to take to the streets, phone lines, social media, and Senators’ offices to tell them to #SaveMedicaid – and we hope you’ll be there with us. United, our message cannot be ignored: Nothing about us without us!

Health Insurance and West Virginia

The Politics of Autism includes an extensive discussion of insurance issues, including the impact of the Affordable Care Act.

The Affordable Care Act has had major consequences for autistic people in West Virginia. Kathy Shapell, president of the Mountaineer Autism Project, writes at The Charleston Gazette-Mail:

First and most important, this coverage provides evidence-based treatment that works. The cost of lifelong care for individuals with autism can be reduced by two-thirds with early diagnosis and treatment, according to the Autism Society of America.

With the ACA, our state is saving taxpayers’ millions of dollars in lifelong care by giving them access to early, effective treatment. In many cases, a child will ultimately be able to attend school in a regular classroom with his or her peers and go on to lead a productive life.

Second, there’s the economic impact from the increase in therapists. The ACA has helped create hundreds of new jobs around autism therapy. Repealing the ACA could endanger those jobs.

Third, access to evidence-based autism treatment is preventing young families from leaving West Virginia. With our state steadily losing population, we need to do everything we can to encourage young families to stay.

Given the obvious benefits of the ACA — to families, to children and to West Virginia — it makes no sense to repeal it without a replacement that offers the same or better coverage. The American Health Care Act (AHCA) passed by the House of Representatives on May 4, is not the answer.

Hyping Suramin

In The Politics of Autism, I discuss various ideas about what causes the condition.  I also write:  "If the science were not confusing enough, its coverage in the mass media has added another layer of murk.  News reports hype tentative findings and weak correlations as “breakthroughs” in the quest for autism answers. "  

Marijuana and stem-cell therapy are just two examples.

Emily Willingham writes at Forbes:

In the small clinical trial that is generating the huge buzz, 10 autistic boys were randomized to receive either one intravenous infusion of suramin or a placebo infusion. The boys, ages 5 to 14 years, were matched by age, IQ, and autism intensity. The study was published in the Annals of Clinical and Translational Neurology.

Following the treatments, Robert Naviaux at the University of California, San Diego, and his team monitored suramin blood levels and autism-related traits for six weeks. At one week after the infusion, scores on a battery of autism tests had improved for the five boys in the treatment group but not the five boys in the placebo group. A few weeks later, those improvements faded.

...
In addition, this study was supposed to be blinded so that no one knew who was getting the suramin infused, but the rash was likely a dead giveaway about which children got the drug. The study authors note that "Five children who received suramin developed a self-limited, evanescent, asymptomatic, fine macular, patchy, morbilliform rash over 1–20% of their body."

The risk of influence from such hints and high expectations is a real one. One parent in the study is quoted in the UC San Diego press release as seeing improvement within one hour of infusion of the drug, saying that their son began to make more eye contact with the clinicians in the room just following the treatment. In the same release, researchers describe children who said their first words in a decade within a week of receiving the drug.

From the press release:

Suramin is not approved for the treatment of autism. Like many intravenous drugs, when administered improperly by untrained personnel, at the wrong dose and schedule, without careful measurement of drug levels and monitoring for toxicity, suramin can cause harm. Careful clinical trials will be needed over several years at several sites to learn how to use low-dose suramin safely in autism, and to identify drug-drug interactions and rare side effects that cannot currently be predicted. We strongly caution against the unauthorized use of suramin.