In the Journals

Care for patients with autism, disabilities faces uncertain future under Trump administration

Health care reform proposals supported by President Donald Trump could have negative consequences for patients with disabilities and autism, meaning the time has come for advocates of these patients to make their voices heard, according to a perspective recently published in The New England Journal of Medicine.

“President Donald Trump’s apparent openness to a long-debunked link between vaccines and autism risks encouraging Americans to stop vaccinating their children, posing a serious public health threat,” David S. Mandell, ScD, of the departments of psychiatry and pediatrics at the University of Pennsylvania, and Colleen L. Barry, PhD, of the department of health policy and management, Johns Hopkins School of Public Health, wrote. “Meanwhile, renewed attention to disproven theories about autism may be distracting us from growing threats to essential policies that support the health and well-being of people with autism and disabilities.”

The authors expressed concern about rolling back the Medicaid expansion and the impact it would have on the 250,000 children with autism who received services from that program in 2013. They noted that 16 million people have signed up for Medicaid and the Childrens’ Health Insurance Program since 2013, many of them with autism and disabilities.

Other concerns that Mandell and Barry have include that lowering or eliminating essential health benefit regulations could restrict choices available to these patients and put the burden on paying for these services on families, rather than the health plans. Another concern is the possibility of purchasing health places from another state.

“If interstate insurance purchasing became possible, out-of-state insurance companies would not have to comply with the autism-mandate requirements in the consumers’ state of residence,” the authors wrote. “Such freedom from requirements might easily precipitate a ‘race to the bottom,’ in which state legislators would repeal autism mandates, and other types of insurance mandates and consumer protections, to make in-state health insurance products price-competitive. As a result, gains achieved to date in access to autism-specific services could be reversed.”

Mandell and Barry also wrote about how changing Medicaid to a block grant program poses another challenge.

“[This] would transfer financial risk from the government to beneficiaries, including people with autism or development disabilities, reduce funding to states to pay for services, and allow states to circumvent regulations requiring them to cover the behavioral health services that are a critical component of autism treatment.”

Mandell and Barry also noted that two Trump appointees — Attorney General Jeff Sessions and Secretary of Education Betsy Devos — have spoken out against the Individuals with Disabilities Education Act. This law, according to Barry and Mandell, which ensures that children with disabilities receive an appropriate education, without facing financial obstacles that children without disabilities do not, might be “the single most important civil right afforded to children with disabilities.” Sessions called the law “the single most irritating problem for teachers through America.” At Devos’ confirmation hearing, when asked if all kindergarten through 12 schools that receive taxpayer funding should be required to meet the requirements of the act, Devos said she thought “that was a matter best left to the states.”

The authors ended with a call to action.

“We believe it is essential that the scientific community and autism advocates call for the use of evidence to guide policy in this area,” Mandell and Barry concluded. “Such a principle would bring needed resources where they are most important, strengthening efforts to support people with autism and other disabilities.” – by Janel Miller

Disclosure: The researchers report no relevant financial disclosures.

Health care reform proposals supported by President Donald Trump could have negative consequences for patients with disabilities and autism, meaning the time has come for advocates of these patients to make their voices heard, according to a perspective recently published in The New England Journal of Medicine.

“President Donald Trump’s apparent openness to a long-debunked link between vaccines and autism risks encouraging Americans to stop vaccinating their children, posing a serious public health threat,” David S. Mandell, ScD, of the departments of psychiatry and pediatrics at the University of Pennsylvania, and Colleen L. Barry, PhD, of the department of health policy and management, Johns Hopkins School of Public Health, wrote. “Meanwhile, renewed attention to disproven theories about autism may be distracting us from growing threats to essential policies that support the health and well-being of people with autism and disabilities.”

The authors expressed concern about rolling back the Medicaid expansion and the impact it would have on the 250,000 children with autism who received services from that program in 2013. They noted that 16 million people have signed up for Medicaid and the Childrens’ Health Insurance Program since 2013, many of them with autism and disabilities.

Other concerns that Mandell and Barry have include that lowering or eliminating essential health benefit regulations could restrict choices available to these patients and put the burden on paying for these services on families, rather than the health plans. Another concern is the possibility of purchasing health places from another state.

“If interstate insurance purchasing became possible, out-of-state insurance companies would not have to comply with the autism-mandate requirements in the consumers’ state of residence,” the authors wrote. “Such freedom from requirements might easily precipitate a ‘race to the bottom,’ in which state legislators would repeal autism mandates, and other types of insurance mandates and consumer protections, to make in-state health insurance products price-competitive. As a result, gains achieved to date in access to autism-specific services could be reversed.”

Mandell and Barry also wrote about how changing Medicaid to a block grant program poses another challenge.

“[This] would transfer financial risk from the government to beneficiaries, including people with autism or development disabilities, reduce funding to states to pay for services, and allow states to circumvent regulations requiring them to cover the behavioral health services that are a critical component of autism treatment.”

Mandell and Barry also noted that two Trump appointees — Attorney General Jeff Sessions and Secretary of Education Betsy Devos — have spoken out against the Individuals with Disabilities Education Act. This law, according to Barry and Mandell, which ensures that children with disabilities receive an appropriate education, without facing financial obstacles that children without disabilities do not, might be “the single most important civil right afforded to children with disabilities.” Sessions called the law “the single most irritating problem for teachers through America.” At Devos’ confirmation hearing, when asked if all kindergarten through 12 schools that receive taxpayer funding should be required to meet the requirements of the act, Devos said she thought “that was a matter best left to the states.”

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The authors ended with a call to action.

“We believe it is essential that the scientific community and autism advocates call for the use of evidence to guide policy in this area,” Mandell and Barry concluded. “Such a principle would bring needed resources where they are most important, strengthening efforts to support people with autism and other disabilities.” – by Janel Miller

Disclosure: The researchers report no relevant financial disclosures.

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