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-

n engl j med 376;10 nejm.org March 9, 2017 e15(1)

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.
PERS PE C T IV E
habilitative services, mental health
services, and behavioral therapies.
Under ACA marketplace regula-
tions, habilitative services are those
that help a person maintain, learn,
or improve skills and function-
ing for daily living; such services
include therapy for children who
are not walking or talking at the
age when they would be expected
to do so for instance, physical
and occupational therapy, speech
language therapy, and other ser-
vices for people with disabilities.
Eliminating the EHB requirement
could transfer the costs of these
important services from health
plans to families even as ACA
repeal would eliminate the subsi-
dies that low-income families in
the individual and small-group
marketplace receive to make am-
bulatory care services affordable.
Furthermore, the ACA extend-
ed the reach of the Mental Health
Parity and Addiction Equity Act
of 2008 (MHPAEA) to individual
and small-group coverage offered
through marketplace plans, in-
cluding mental health services as
components of the EHB. The aim
of the MHPAEA was to eliminate
long-standing inequities in cover-
age for mental health and sub-
stance use disorder services rela-
tive to general medical services.
Although the federal parity law
does not explicitly indicate which
conditions must be covered at
parity, research shows that it has
been associated with improve-
ments in access to autism-specific
services paid for through insur-
ance and has not driven up fami-
lies out-of-pocket costs.3
One expected provision in any
ACA replacement plan would in-
volve opening up health insur-
ance markets across state lines.
Under current law, consumers are
prohibited from purchasing a
e15(2)
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.
care for autism and other disabilities
health plan licensed in another
state. The intent of interstate in-
surance purchasing is to improve
market competition by allowing
consumers to choose among more
coverage options. Interstate pur-
chasing has major implications
for state health insurance man-
dates such as those enacted in
44 states to require commercial,
fully insured plans to cover autism-
specific behavioral therapies. Our
research indicates that state
autism-coverage mandates have led
to sizable increases in the numbers
of children receiving treatment for
autism that is covered by commer-
cial insurance.4 If interstate insur-
ance purchasing became possible,
out-of-state insurance companies
would not have to comply with
the autism-mandate requirements
in consumers state of residence;
such freedom from requirements
might easily precipitate a race to
the bottom, in which state legis-
lators would repeal autism man-
dates (and other types of insurance
mandates and consumer protec-
tions) to make in-state health in-
surance products price-competi-
tive. As a result, gains achieved
to date in access to autism-specific
services could be reversed.
Finally, the Individuals with
Disabilities Education Act (IDEA)
guarantees children with disabil-
ities a free and appropriate pub-
lic education. It may be the single
most important civil right afforded
to children with autism or other
disabilities, and schools are a
critical setting in which these
children receive services ranging
from minor classroom accommo-
dations to speech therapy to daily,
separate instruction. Jeff Sessions,
the new U.S. attorney general,
has described this law as the sin-
gle most irritating problem for
teachers throughout America to-
n engl j med 376;10 nejm.org March 9, 2017
day and a big factor in acceler-
ating the decline in civility and
discipline in classrooms all over
America.5 Secretary of Education
Betsy DeVos indicated in her con-
firmation hearing that states
should have the right to decide
whether to enforce the IDEA, a
notion at odds with the laws re-
quirement that all schools receiv-
ing federal funding including
charter schools provide support
for children with autism or other
disabilities.
DeVos is also a heavy investor in
Neurocore and has refused to di-
vest her stock holdings. This com-
pany claims astonishing results
using biofeedback for children
with neurodevelopmental disabili-
ties, but these claims are not
backed by any peer-reviewed sci-
ence. Now, DeVos will be oversee-
ing the Department of Educations
considerable research portfolio and
funding, and she could have a fi-
nancial incentive to shift educa-
tion research and practice away
from evidence-based practices.
We believe it is essential that
the scientific community and au-
tism advocates call for the use of
evidence to guide policy in this
area. Such a principle would bring
needed resources where they are
most important, strengthening ef-
forts to support people with au-
tism or other disabilities.
Disclosure forms provided by the authors
are available at NEJM.org.
From the Departments of Psychiatry and
Pediatrics and the Center for Mental Health
Policy and Services Research, University of
Pennsylvania, Philadelphia (D.S.M.); and the
Department of Health Policy and Manage-
ment, Johns Hopkins Bloomberg School of
Public Health, the Johns Hopkins Center for
Mental Health and Addiction Policy Re-
search, and the Johns Hopkins Wendy Klag
Center for Autism and Developmental Dis-
abilities all in Baltimore (C.L.B.).
This article was published on March 8, 2017,
at NEJM.org.
PE R S PE C T IV E Care for Autism and Other Disabilities

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