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The NEW ENGLA ND JOURNAL of MEDICINE

Perspective March 9, 2017

Care for Autism and Other Disabilities A Future in Jeopardy


DavidS. Mandell, Sc.D., and ColleenL. Barry, Ph.D.

T
he false belief that vaccines cause autism has of Medicaid to a block grant
been forcefully countered by the scientific would transfer financial risk from
the government to beneficiaries,
community,1,2 which recognizes that vaccines including people with autism or
are among the most valuable medical innovations developmental disabilities, reduce
funding to states to pay for ser-
of our time. President Donald mental disabilities. In 2013, the vices, and allow states to circum-
Trumps apparent openness to a most recent year for which na- vent regulations requiring them to
long-debunked link between vac- tional Medicaid claims are avail- cover the behavioral health ser-
cines and autism risks encourag- able, approximately 250,000 chil- vices that are a critical component
ing Americans to stop vaccinating dren with diagnoses of autism of autism treatment.
their children, posing a serious received services through Medic- Proposed changes to individual
public health threat. Meanwhile, aid. The new secretary of health and small-group commercial in-
renewed attention to disproven and human services, Tom Price, surance markets are also likely to
theories about autism may be dis- has worked to repeal the Afford- have negative consequences for
tracting us from growing threats able Care Act (ACA), and this people with autism or other dis-
to essential policies that support would eliminate the recent Med- abilities. Efforts to degrade or
the health and well-being of people icaid expansion. Since ACA en- eliminate the essential health ben-
with autism or other disabilities. rollment began in the fall of 2013, efit (EHB) regulations, which re-
One critical way in which health enrollment in Medicaid and the quire health plans operating in
care for people with autism or Childrens Health Insurance Pro- the individual and small-group
other disabilities may be rolled gram has increased by 16 million marketplace to cover 10 benefit
back is through changes to public people, with 85% of these increas- categories, would severely limit
health insurance. Medicaid, which es occurring in Medicaid-expan- the availability of services to chil-
covers Americans living in poverty sion states. This number includes dren with autism or other dis-
and those with disabilities, is the many children and adults with abilities.
single largest health care payer autism or other disabilities. The currently mandated cate-
for people with autism or develop- Proposals to shift the structure gories include habilitative and re-

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PERS PE C T IV E care for autism and other disabilities

habilitative services, mental health health plan licensed in another day and a big factor in acceler-
services, and behavioral therapies. state. The intent of interstate in- ating the decline in civility and
Under ACA marketplace regula- surance purchasing is to improve discipline in classrooms all over
tions, habilitative services are those market competition by allowing America.5 Secretary of Education
that help a person maintain, learn, consumers to choose among more Betsy DeVos indicated in her con-
or improve skills and function- coverage options. Interstate pur- firmation hearing that states
ing for daily living; such services chasing has major implications should have the right to decide
include therapy for children who for state health insurance man- whether to enforce the IDEA, a
are not walking or talking at the dates such as those enacted in notion at odds with the laws re-
age when they would be expected 44 states to require commercial, quirement that all schools receiv-
to do so for instance, physical fully insured plans to cover autism- ing federal funding including
and occupational therapy, speech specific behavioral therapies. Our charter schools provide support
language therapy, and other ser- research indicates that state for children with autism or other
vices for people with disabilities. autism-coverage mandates have led disabilities.
Eliminating the EHB requirement to sizable increases in the numbers DeVos is also a heavy investor in
could transfer the costs of these of children receiving treatment for Neurocore and has refused to di-
important services from health autism that is covered by commer- vest her stock holdings. This com-
plans to families even as ACA cial insurance.4 If interstate insur- pany claims astonishing results
repeal would eliminate the subsi- ance purchasing became possible, using biofeedback for children
dies that low-income families in out-of-state insurance companies with neurodevelopmental disabili-
the individual and small-group would not have to comply with ties, but these claims are not
marketplace receive to make am- the autism-mandate requirements backed by any peer-reviewed sci-
bulatory care services affordable. in consumers state of residence; ence. Now, DeVos will be oversee-
Furthermore, the ACA extend- such freedom from requirements ing the Department of Educations
ed the reach of the Mental Health might easily precipitate a race to considerable research portfolio and
Parity and Addiction Equity Act the bottom, in which state legis- funding, and she could have a fi-
of 2008 (MHPAEA) to individual lators would repeal autism man- nancial incentive to shift educa-
and small-group coverage offered dates (and other types of insurance tion research and practice away
through marketplace plans, in- mandates and consumer protec- from evidence-based practices.
cluding mental health services as tions) to make in-state health in- We believe it is essential that
components of the EHB. The aim surance products price-competi- the scientific community and au-
of the MHPAEA was to eliminate tive. As a result, gains achieved tism advocates call for the use of
long-standing inequities in cover- to date in access to autism-specific evidence to guide policy in this
age for mental health and sub- services could be reversed. area. Such a principle would bring
stance use disorder services rela- Finally, the Individuals with needed resources where they are
tive to general medical services. Disabilities Education Act (IDEA) most important, strengthening ef-
Although the federal parity law guarantees children with disabil- forts to support people with au-
does not explicitly indicate which ities a free and appropriate pub- tism or other disabilities.
conditions must be covered at lic education. It may be the single Disclosure forms provided by the authors
parity, research shows that it has most important civil right afforded are available at NEJM.org.

been associated with improve- to children with autism or other From the Departments of Psychiatry and
ments in access to autism-specific disabilities, and schools are a Pediatrics and the Center for Mental Health
services paid for through insur- critical setting in which these Policy and Services Research, University of
Pennsylvania, Philadelphia (D.S.M.); and the
ance and has not driven up fami- children receive services ranging Department of Health Policy and Manage-
lies out-of-pocket costs.3 from minor classroom accommo- ment, Johns Hopkins Bloomberg School of
One expected provision in any dations to speech therapy to daily, Public Health, the Johns Hopkins Center for
Mental Health and Addiction Policy Re-
ACA replacement plan would in- separate instruction. Jeff Sessions, search, and the Johns Hopkins Wendy Klag
volve opening up health insur- the new U.S. attorney general, Center for Autism and Developmental Dis-
ance markets across state lines. has described this law as the sin- abilities all in Baltimore (C.L.B.).

Under current law, consumers are gle most irritating problem for This article was published on March 8, 2017,
prohibited from purchasing a teachers throughout America to- at NEJM.org.

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The New England Journal of Medicine


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Copyright 2017 Massachusetts Medical Society. All rights reserved.
PE R S PE C T IV E Care for Autism and Other Disabilities

1. Institute of Medicine, Board on Health Increased service use among children with decline in civility in classrooms. Washing-
Promotion and Disease Prevention. Immu- autism spectrum disorder associated with ton Post. December 2, 2016 (https://w ww
nization safety review: vaccines and autism. mental health parity law. Health Aff (Mill- .washingtonpost.com/news/answer-sheet/wp/
Washington, DC:National Academies Press, wood) 2017;36:337-45. 2016/12/02/sen-sessions-once-linked-special
2004. 4. Mandell DS, Barry CL, Marcus SC, et al. -education-law-to-decline-in-civility-in
2. Maglione MA, Das L, Raaen L, et al. The effects of autism insurance mandates -classrooms/?utm_term=.2e6b8af0c9b7).
Safety of vaccines used for routine immuni- on the treated prevalence of autism. JAMA
zation of U.S. children: a systematic review. Pediatr 2016;170:887-93. DOI: 10.1056/NEJMp1700697
Copyright 2017 Massachusetts Medical Society.
Pediatrics 2014;134:325-37. 5. Strauss V. Trumps pick for attorney gen- Care for Autism and Other Disabilities

3. Stuart EA, McGinty EE, Kalb L, et al. eral once linked special education law to

n engl j med 376;10 nejm.org March 9, 2017 e15(3)


The New England Journal of Medicine
Downloaded from nejm.org on May 29, 2017. For personal use only. No other uses without permission.
Copyright 2017 Massachusetts Medical Society. All rights reserved.