1.Short
title; table of contents
(a)This Act may be cited
as the Autism Treatment Acceleration
Act of 2009
.
(b)The table of contents for this Act is as follows:
Sec. 1. Short title; table of
contents.
Sec. 2. Findings.
Sec. 3. Parental rights rule of construction.
Sec. 4. Definitions; technical amendment to the Public Health
Service Act.
Sec. 5. Autism Care Centers Demonstration Project.
Sec. 6. Planning and demonstration grants for services for
adults.
Sec. 7. National Registry.
Sec. 8. Multimedia campaign.
Sec. 9. Interdepartmental Autism Coordinating
Committee.
Sec. 10. National Network for Autism Spectrum Disorders
Research and Services.
Sec. 11. National training initiatives on autism spectrum
disorders.
Sec. 12. Amendments relating to health insurance.
Sec. 13. Authorization of appropriations.
2.Congress makes the following
findings:
(1)Autism (sometimes
called classical autism) is the most common condition in a group
of developmental disorders known as autism spectrum disorders.
(2)Autism spectrum
disorders include autism as well as Asperger syndrome, Retts syndrome,
childhood disintegrative disorder, and pervasive developmental disorder not
otherwise specified (usually referred to as PDD–NOS), as well as other related
developmental disorders.
(3)Individuals with
autism spectrum disorders have the same rights as other individuals to exert
control and choice over their own lives, to live independently, and to
participate fully in, and contribute to, their communities and society through
full integration and inclusion in the economic, political, social, cultural,
and educational mainstream of society. Individuals with autism spectrum
disorders have the right to a life with dignity and purpose.
(4)While there is no
uniform prevalence or severity of symptoms associated with autism spectrum
disorders, the National Institutes of Health has determined that autism
spectrum disorders are characterized by 3 distinctive behaviors: impaired
social interaction, problems with verbal and nonverbal communication, and
unusual, repetitive, or severely limited activities and interests.
(5)Both children and
adults with autism spectrum disorders can show difficulties in verbal and
nonverbal communication, social interactions, and sensory processing.
Individuals with autism spectrum disorders exhibit different symptoms or
behaviors, which may range from mild to significant, and require varying
degrees of support from friends, families, service providers, and
communities.
(6)Individuals with
autism spectrum disorders often need assistance in the areas of comprehensive
early intervention, health, recreation, job training, employment, housing,
transportation, and early, primary, and secondary education. With access to,
and assistance with, these types of services and supports, individuals with
autism spectrum disorders can live rich, full, and productive lives. Greater
coordination and streamlining within the service delivery system will enable
individuals with autism spectrum disorders and their families to access
assistance from all sectors throughout an individual’s lifespan.
(7)A 2007 report
from the Centers for Disease Control and Prevention found that the prevalence
of autism spectrum disorders is estimated to be 1 in 150 people in the United
States.
(8)The Harvard
School of Public Health reported that the cost of caring for and treating
individuals with autism spectrum disorders in the United States is more than
$35,000,000,000 annually (an estimated $3,200,000 over an individual’s
lifetime).
(9)Although the
overall incidence of autism is consistent around the globe, researchers with
the Journal of Paediatrics and Child Health have found that males are 4 times
more likely to develop an autism spectrum disorder than females. Autism
spectrum disorders know no racial, ethnic, or social boundaries, nor
differences in family income, lifestyle, or educational levels, and can affect
any child.
(10)Individuals with
autism spectrum disorders from low-income, rural, and minority communities
often face significant obstacles to accurate diagnosis and necessary
specialized services, supports, and education.
(11)There is strong
consensus within the research community that intensive treatment as soon as
possible following diagnosis not only can reduce the cost of lifelong care by
two-thirds, but also yields the most positive life outcomes for children with
autism spectrum disorders.
(12)Individuals with
autism spectrum disorders and their families experience a wide range of medical
issues. Few common standards exist for the diagnosis and management of many
aspects of clinical care. Behavioral difficulties may be attributed to the
overarching disorder rather than to the pain and discomfort of a medical
condition, which may go undetected and untreated. The health care and other
treatments available in different communities can vary widely. Many families,
lacking access to comprehensive and coordinated health care, must fend for
themselves to find the best health care, treatments, and services in a complex
clinical world.
(13)Effective health
care, treatment, and services for individuals with autism spectrum disorders
depends upon a continuous exchange among researchers and caregivers.
Evidence-based and promising autism practices should move quickly into
communities, allowing individuals with autism spectrum disorders and their
families to benefit from the newest research and enabling researchers to learn
from the life experiences of the people whom their work most directly
affects.
(14)There is a
critical shortage of appropriately trained personnel across numerous important
disciplines who can assess, diagnose, treat, and support children and adults
with autism spectrum disorders and their families. Practicing professionals, as
well as those in training to become professionals, need the most up-to-date
practices informed by the most current research findings.
(15)The appropriate
goals of the Nation regarding individuals with autism spectrum disorder are the
same as the appropriate goals of the Nation regarding individuals with
disabilities in general, as established in the Americans with Disabilities Act
of 1990 (42 U.S.C. 12101 et seq.): to assure equality of opportunity, full
participation, independent living, and economic self-sufficiency for such
individuals.
(16)Finally,
individuals with autism spectrum disorders are often denied health care
benefits solely because of their diagnosis, even though proven, effective
treatments for autism spectrum disorders do exist.
3.Parental rights
rule of constructionNothing
in this Act shall be construed to modify the legal rights of parents or legal
guardians under Federal, State, or local law regarding the care of their
children.
4.Definitions;
technical amendment to the Public Health Service ActPart R of title III of the Public Health
Service Act (42 U.S.C. 280i et seq.) is amended—
(1)by inserting after the header for part R
the following:
1Surveillance and
Research Program; Education, Early Detection, and Intervention; and
Reporting
;
(2)in section
399AA(d), by striking part
and inserting subpart
;
and
(3)by adding at the
end the following:
2Care for people
with autism spectrum disorders, registry, and public education
399GG.Except as otherwise provided, in this
subpart:
(1)The term autism spectrum disorder means a
developmental disability that causes substantial impairments in the areas of
social interaction, emotional regulation, communication, and the integration of
higher-order cognitive processes and which may be characterized by the presence
of unusual behaviors and interests. Such term includes autistic disorder,
pervasive developmental disorder (not otherwise specified), Asperger syndrome,
Retts disorder, childhood disintegrative disorder, and other related
developmental disorders.
(2)Adult with
autism spectrum disorderThe term adult with autism
spectrum disorder means an individual with an autism spectrum disorder
who has attained 22 years of age.
(3)The term affected individual means an
individual with an autism spectrum disorder.
(4)The
term autism means an autism spectrum disorder or a related
developmental disability.
(5)The term autism management team
means a group of autism care providers, including behavioral specialists,
physicians, psychologists, social workers, family therapists, nurse
practitioners, nurses, educators, other appropriate personnel, and family
members who work in a coordinated manner to treat individuals with autism
spectrum disorders and their families. Such team shall determine the specific
structure and operational model of its specific autism care center, taking into
consideration cultural, regional, and geographical factors.
(6)The term care management model means a model
of care that with respect to autism—
(A)is centered on
the relationship between an individual with an autism spectrum disorder and his
or her family and their personal autism care coordinator;
(B)provides services
to individuals with autism spectrum disorders to improve the management and
coordination of care provided to patients and their families; and
(C)has established,
where practicable, effective referral relationships between the autism care
coordinator and the major medical, educational, and behavioral specialties and
ancillary services in the region.
(7)Child with
autism spectrum disorderThe term child with autism
spectrum disorder means an individual with an autism spectrum disorder
who has not attained 22 years of age.
(8)The
term interventions means the educational methods and positive
behavioral support strategies designed to improve or ameliorate symptoms
associated with autism spectrum disorders.
(9)The
term Network means the Network for Autism Spectrum Disorders
Research and Services described in section 10 of the
Autism Treatment Acceleration Act of
2009.
(10)Personal
primary care coordinatorThe term personal primary care
coordinator means a physician, nurse, nurse practitioner, psychologist,
social worker, family therapist, educator, or other appropriate personnel (as
determined by the Secretary) who has extensive expertise in treatment and
services for individuals with autism spectrum disorders, who—
(A)practices in an
autism care center; and
(B)has been trained
to coordinate and manage comprehensive autism care for the whole person.
(11)The
term project means the autism care center demonstration project
established under section 399HH.
(12)The
term services means services to assist individuals with autism
spectrum disorders to live more independently in their communities and to
improve their quality of life.
(13)The
term treatments means the health services, including mental health
and behavioral therapy services, designed to improve or ameliorate symptoms
associated with autism spectrum disorders.
(14)In this subpart, the term autism care center
means a center that is directed by a primary care coordinator who is an expert
in autism spectrum disorder treatment and practice and provides an array of
medical, psychological, behavioral, educational, and family services to
individuals with autism and their families. Such a center shall—
(A)incorporate the
attributes of the care management model;
(B)offer, through
on-site service provision or through detailed referral and coordinated care
arrangements, an autism management team of appropriate providers, including
behavioral specialists, physicians, psychologists, social workers, family
therapists, nurse practitioners, nurses, educators, and other appropriate
personnel; and
(C)have the
capability to achieve improvements in the management and coordination of care
for targeted
beneficiaries.
.
5.Autism Care
Centers Demonstration ProjectPart R of title III of the Public Health
Service Act (42 U.S.C. 280i), as amended by section 4, is further amended by
adding at the end the following:
399HH.Autism Care
Center demonstration project
(a)Not later than 1 year
after the date of enactment of the Autism
Treatment Acceleration Act of 2009, the Secretary, acting through
the Administrator of the Health Resources and Services Administration, shall
establish a demonstration project for the implementation of an Autism Care
Center Program (referred to in this section as the Program) to
provide grants and other assistance to improve the effectiveness and efficiency
in providing comprehensive care to individuals diagnosed with autism spectrum
disorders and their families.
(b)The
Program shall be designed—
(1)to
increase—
(A)comprehensive
autism spectrum disorder care delivery;
(B)access to
appropriate health care services, especially wellness and prevention care, at
times convenient for patients;
(C)patient
satisfaction;
(D)communication
among autism spectrum disorder health care providers, behaviorists, educators,
specialists, hospitals, and other autism spectrum disorder care
providers;
(E)school placement
and attendance;
(F)successful
transition to postsecondary education, vocational or job training and
placement, and comprehensive adult services for individuals with autism
spectrum disorders, focusing in particular upon the transitional period for
individuals between the ages of 18 and 25;
(G)the quality of
health care services, taking into account nationally developed standards and
measures;
(H)development,
review, and promulgation of common clinical standards and guidelines for
medical care to individuals with autism spectrum disorders;
(I)development of
clinical research projects to support clinical findings in a search for
recommended practices; and
(J)the quality of
life of individuals with autism spectrum disorders, including communication
abilities, social skills, community integration, and employment and other
related services; and
(2)to
decrease—
(A)inappropriate
emergency room utilization, which can be accomplished through initiatives such
as expanded hours of care;
(B)avoidable
hospitalizations;
(C)the duplication
of health care services;
(D)the inconvenience
of multiple provider locations;
(E)health
disparities and inequalities that individuals with autism spectrum disorders
face; and
(F)preventable and
inappropriate involvement with the juvenile and criminal justice
systems.
(c)To be eligible to receive assistance under the Program,
an entity shall—
(1)be a State or a
public or private nonprofit entity;
(2)agree to
establish and implement an autism care center that—
(A)enables targeted
beneficiaries to designate a personal primary care coordinator in such center
to be their source of first contact and to recommend comprehensive and
coordinated care for the whole of the individual;
(B)provides for the
establishment of a coordination of care committee that is composed of
clinicians and practitioners trained in and working in autism spectrum disorder
intervention;
(C)establishes a
network of physicians, psychologists, family therapists, behavioral
specialists, social workers, educators, and health centers that have
volunteered to participate as consultants to patient-centered autism care
centers to provide high-quality care, focusing on autism spectrum disorder
care, at the appropriate times and places and in a cost-effective
manner;
(D)works in
cooperation with hospitals, local public health departments, and the network of
patient-centered autism care centers, to coordinate and provide health
care;
(E)utilizes health
information technology to facilitate the provision and coordination of health
care by network participants; and
(F)collaborates with
other entities to further the goals of the program, particularly by
collaborating with entities that provide transitional adult services to
individuals between the ages of 18 and 25 with autism spectrum disorder, to
ensure successful transition of such individuals to adulthood; and
(3)submit to the
Secretary an application, at such time, in such manner, and containing such
information as the Secretary may require, including—
(A)a description of
the treatments, interventions, or services that the eligible entity proposes to
provide under the Program;
(B)a demonstration
of the capacity of the eligible entity to provide or establish such treatments,
interventions, and services within such entity;
(C)a demonstration
of the capacity of the eligible entity to monitor and evaluate the outcomes of
the treatments, interventions, and services described in subparagraph
(A);
(D)estimates of the
number of individuals and families who will be served by the eligible entity
under the Program, including an estimate of the number of such individuals and
families in medically underserved areas;
(E)a description of
the ability of the eligible entity to enter into partnerships with
community-based or nonprofit providers of treatments, interventions, and
services, which may include providers that act as advocates for individuals
with autism spectrum disorders and local governments that provide services for
individuals with autism spectrum disorders at the community level;
(F)a description of
the ways in which access to such treatments and services may be sustained
following the Program period;
(G)a description of
the ways in which the eligible entity plans to collaborate with other entities
to develop and sustain an effective protocol for successful transition from
children's services to adult services for individuals with autism spectrum
disorder, particularly for individuals between the ages of 18 and 25;
and
(H)a description of
the compliance of the eligible entity with the integration requirement provided
under section 302 of the Americans with Disabilities Act of 1990 (42 U.S.C.
12182).
(d)The
Secretary shall award 3-year grants to eligible entities whose applications are
approved under subsection (c). Such grants shall be used to—
(1)carry out a
program designed to meet the goals described in subsection (b) and the
requirements described in subsection (c); and
(2)facilitate
coordination with local communities to be better prepared and positioned to
understand and meet the needs of the communities served by autism care
centers.
(e)
(1)Each recipient of a grant under this section shall
establish an autism care center advisory council, which shall advise the autism
care center regarding policies, priorities, and services.
(2)Each
recipient of a grant shall appoint members of the recipient's advisory council,
which shall include a variety of autism care center service providers,
individuals from the public who are knowledgeable about autism spectrum
disorders, individuals receiving services through the Program, and family
members of such individuals. At least 60 percent of the membership shall be
comprised of individuals who have received, or are receiving, services through
the Program or who are family members of such individuals.
(3)The
recipient of a grant shall appoint a chairperson to the advisory council of the
recipient's autism care center who shall be—
(A)an individual
with autism spectrum disorder who has received, or is receiving, services
through the Program; or
(B)a family member
of such an individual.
(f)The
Secretary shall enter into a contract with an independent third-party
organization with expertise in evaluation activities to conduct an evaluation
and, not later than 180 days after the conclusion of the 3-year grant program
under this section, submit a report to the Secretary, which may include
measures such as whether and to what degree the treatments, interventions, and
services provided through the Program have resulted in improved health,
educational, employment, and community integration outcomes for individuals
with autism spectrum disorders, or other measures, as the Secretary determines
appropriate.
(g)Of the amounts appropriated to carry out this section,
the Secretary shall allocate not more than 7 percent for administrative
expenses, including the expenses related to carrying out the evaluation
described in subsection (f).
(h)Amounts provided to an entity under this section shall
be used to supplement, not supplant, amounts otherwise expended for existing
treatments, interventions, and services for individuals with autism spectrum
disorders.
.
6.Planning and
demonstration grants for services for adultsPart R of title III of the Public Health
Service Act (42 U.S.C. 280i), as amended by section 5, is further amended by
adding at the end the following:
399II.Planning and
demonstration grant for services for adults
(a)In order to enable selected eligible entities to provide
appropriate services to adults with autism spectrum disorders, to enable such
adults to be as independent as possible, the Secretary shall establish—
(1)a one-time,
single-year planning grant program for eligible entities; and
(2)a multiyear
service provision demonstration grant program for selected eligible
entities.
(b)Grants shall be awarded to eligible entities to provide
all or part of the funding needed to carry out programs that focus on critical
aspects of adult life, such as—
(1)postsecondary
education, vocational training, self-advocacy skills, and employment;
(2)residential
services and supports, housing, and transportation;
(3)nutrition, health
and wellness, recreational and social activities; and
(4)personal safety
and the needs of individuals with autism spectrum disorders who become involved
with the criminal justice system.
(c)An eligible entity desiring to receive a grant under this
section shall be a State or other public or private nonprofit organization,
including an autism care center.
(d)
(1)The Secretary shall award one-time grants to eligible
entities to support the planning and development of initiatives that will
expand and enhance service delivery systems for adults with autism spectrum
disorders.
(2)In
order to receive such a grant, an eligible entity shall—
(A)submit an
application at such time and containing such information as the Secretary may
require; and
(B)demonstrate the
ability to carry out such planning grant in coordination with the State
Developmental Disabilities Council and organizations representing or serving
individuals with autism spectrum disorders and their families.
(e)
(1)The Secretary shall award grants to eligible entities
that have received a planning grant under subsection (d) to enable such
entities to provide appropriate services to adults with autism spectrum
disorders.
(2)In
order to receive a grant under paragraph (1), the eligible entity shall submit
an application at such time and containing such information as the Secretary
may require, including—
(A)the services that
the eligible entity proposes to provide and the expected outcomes for adults
with autism spectrum disorders who receive such services;
(B)the number of
adults and families who will be served by such grant, including an estimate of
the adults and families in underserved areas who will be served by such
grant;
(C)the ways in which
services will be coordinated among both public and nonprofit providers of
services for adults with disabilities, including community-based
services;
(D)where applicable,
the process through which the eligible entity will distribute funds to a range
of community-based or nonprofit providers of services, including local
governments, and such entity's capacity to provide such services;
(E)the process
through which the eligible entity will monitor and evaluate the outcome of
activities funded through the grant, including the effect of the activities
upon adults with autism spectrum disorders who receive such services;
(F)the plans of the
eligible entity to coordinate and streamline transitions from youth to adult
services;
(G)the process by
which the eligible entity will ensure compliance with the integration
requirement provided under section 302 of the Americans With Disabilities Act
of 1990 (42 U.S.C. 12182); and
(H)a description of
how such services may be sustained following the grant period.
(f)The
Secretary shall contract with a third-party organization with expertise in
evaluation to evaluate such demonstration grant program and, not later than 180
days after the conclusion of the grant program under subsection (e), submit a
report to the Secretary. The evaluation and report may include an analysis of
whether and to what extent the services provided through the grant program
described in this section resulted in improved health, education, employment,
and community integration outcomes for adults with autism spectrum disorders,
or other measures, as the Secretary determines appropriate.
(g)Of the amounts appropriated to carry out this section,
the Secretary shall set aside not more than 7 percent for administrative
expenses, including the expenses related to carrying out the evaluation
described in subsection (f).
(h)Demonstration grant funds provided under this section
shall supplement, not supplant, existing treatments, interventions, and
services for individuals with autism spectrum
disorders.
.
7.Part R of title III
of the Public Health Service Act (42 U.S.C. 280i), as amended by section 6, is
further amended by adding at the end the following:
399JJ.National
Registry for Autism Spectrum Disorders
(a)The
Secretary, in consultation with national health organizations and professional
societies with experience and expertise relating to autism spectrum disorders,
shall establish a voluntary population-based registry of cases of autism
spectrum disorders. Such registry shall be known as the National Registry
for Autism Spectrum Disorders (referred to in this section as the
Registry). The Secretary shall ensure that the Registry maintains
the privacy of individuals and the highest level of medical and scientific
research ethics.
(b)The
purpose of the Registry is to facilitate the collection, analysis, and
dissemination of data related to autism spectrum disorders that can increase
understanding of causal factors, rates, and trends of autism spectrum
disorders.
(c)In
carrying out the Registry, the Secretary may—
(1)implement a
surveillance and monitoring system that is based on thorough and complete
medical diagnosis data, clinical history, and medical findings;
(2)collect
standardized information concerning the environmental, medical, social, and
genetic circumstances that may correlate with diagnosis of autism spectrum
disorders;
(3)promote the use
of standardized autism spectrum disorder investigation and reporting tools of
the Centers for Disease Control and Prevention, as well as standardized autism
spectrum disorder protocols;
(4)establish a
standardized classification system for defining subcategories of autism
spectrum disorders for surveillance research activities; and
(5)support
multidisciplinary reviews of autism spectrum
disorders.
.
8.Part R of title III
of the Public Health Service Act (42 U.S.C. 280i), as amended by section 7, is
further amended by adding at the end the following:
399KK.
(a)The Secretary, in order to enhance existing awareness
campaigns and provide for the implementation of new campaigns, shall award
grants to public and nonprofit private entities for the purpose of carrying out
multimedia campaigns to increase public education and awareness and reduce
stigma concerning—
(1)healthy
developmental milestones for infants and children that may assist in the early
identification of the signs and symptoms of autism spectrum disorders;
and
(2)autism spectrum
disorders through the lifespan and the challenges that individuals with autism
spectrum disorders face, which may include transitioning into adulthood,
securing appropriate job training or postsecondary education, securing and
holding jobs, finding suitable housing, interacting with the correctional
system, increasing independence, and attaining a good quality of life.
(b)To
be eligible to receive a grant under subsection (a), an entity shall—
(1)submit to the
Secretary an application at such time, in such manner, and containing such
information as the Secretary may require; and
(2)provide assurance
that the multimedia campaign implemented under such grant will provide
information that is tailored to the intended audience, which may be a diverse
public audience or a specific audience, such as health professionals, criminal
justice professionals, or emergency response
professionals.
.
9.Interdepartmental
Autism Coordinating Committee
(a)There
is established a committee, to be known as the Interdepartmental Autism
Coordinating Committee (referred to in this section as the
Committee), to coordinate all Federal efforts concerning autism
spectrum disorders.
(b)In
carrying out its duties under this section, the Committee shall—
(1)develop and
annually update a summary of developments in research on autism spectrum
disorders, services for people on the autism spectrum and their families, and
programs that focus on people on the autism spectrum;
(2)monitor
governmental and nongovernmental activities with respect to autism spectrum
disorders;
(3)make
recommendations to the Secretary of Health and Human Services and other
relevant heads of agencies (referred to in this subsection as the agency
heads) regarding any appropriate changes to such activities and any
ethical considerations relating to those activities;
(4)make
recommendations to the agency heads regarding public participation in decisions
relating to autism spectrum disorders;
(5)develop and
annually update a strategic plan, including proposed budgetary requirements,
for conducting and supporting research related to autism spectrum disorders,
services for individuals on the autism spectrum and their families, and
programs that focus on such individuals and their families; and
(6)annually submit
to Congress and the President such strategic plan and any updates to such
plan.
(c)
(1)The Committee shall be composed of—
(A)the Director of
the National Institutes of Health, and the directors of such national research
institutes of the National Institutes of Health as the Director determines
appropriate;
(B)the heads of
other agencies within the Department of Health and Human Services, as the
Secretary determines appropriate; and
(C)representatives
of the Department of Education, the Department of Defense, and other Federal
agencies that provide services to individuals with autism spectrum disorders
and their families or that have programs that affect individuals with autism
spectrum disorders, as the Secretary determines appropriate.
(2)Not less than 2/5 of the total
membership of the Committee shall be composed of public members to be appointed
by the Secretary, of which—
(A)at least one such
member shall be an individual with an autism spectrum disorder;
(B)at least one such
member shall be a parent or legal guardian of an individual with an autism
spectrum disorder;
(C)at least one such
member shall be a representative of a nongovernmental organization that
provides services to individuals with autism spectrum disorders or their
families; and
(D)at least one such
member shall be a representative of a leading research, advocacy, and service
organization for individuals with autism spectrum disorders and their
families.
(d)Administrative
support; terms of service; other provisionsThe following
provisions shall apply with respect to the Committee:
(1)The Committee
shall receive necessary and appropriate administrative support from the
Secretary.
(2)Members of the
Committee appointed under subsection (c)(2) shall serve for a term of 4 years
and may be reappointed for one or more additional 4-year terms. The term of any
member appointed under subsection (c)(2)(C) or subsection (c)(2)(D) shall
expire if the member no longer represents the organization described in such
subsections. Any member appointed to fill a vacancy for an unexpired term shall
be appointed for the remainder of such term. A member may serve after the
expiration of the member’s term until a successor has taken office.
(3)The Committee
shall be chaired by the Secretary or the Secretary’s designee. The Committee
shall meet at the call of the chairperson and not fewer than 2 times each
year.
(4)All meetings of
the Committee or its subcommittees shall be public and shall include
appropriate time periods for questions and presentations by the public.
(5)The Committee may
convene workshops and conferences.
(e)Subcommittees:
establishment and membership
(1)Establishment
of subcommitteesIn carrying out its functions, the Committee may
establish—
(A)a subcommittee on
research on autism spectrum disorders;
(B)a subcommittee on
services for individuals with autism spectrum disorders and their families and
programs that focus on individuals with autism spectrum disorders; and
(C)such other
subcommittees as the Committee determines appropriate.
(2)Subcommittees
may include as members individuals who are not members of the Committee.
(3)Subcommittees
may hold such meetings as are necessary.
(f)Interagency
autism coordinating committeePart R of title III of the Public
Health Service Act (42 U.S.C. 280i) is amended by striking section 399CC (42
U.S.C. 284i–2).
10.National
Network for Autism Spectrum Disorders Research and Services
(a)In
this section:
(1)The
term services means services to assist individuals with autism
spectrum disorders to live more independently in their communities and improve
the quality of life of such individuals.
(2)The
term Secretary means the Secretary of Health and Human
Services.
(3)The
term treatments means the health services, including mental health
and behavioral therapy services, designed to improve or ameliorate symptoms
associated with autism spectrum disorders.
(4)In this subpart, the term autism care center
means a center that is directed by a primary care coordinator who is an expert
in autism spectrum disorder treatment and practice and provides an array of
medical, psychological, behavioral, educational, and family services to
individuals with autism and their families. Such a center shall—
(A)incorporate the
attributes of the care management model;
(B)offer, through
on-site service provision or through detailed referral and coordinated care
arrangements, an autism management team of appropriate providers, including
behavioral specialists, physicians, psychologists, social workers, family
therapists, nurse practitioners, nurses, educators, and other appropriate
personnel; and
(C)have the
capability to achieve improvements in the management and coordination of care
for targeted beneficiaries.
(b)Establishment
of the national network for autism spectrum disorders research and
servicesNot later than 1 year after the date of enactment of
this Act, the Secretary shall establish the National Network for Autism
Spectrum Disorders Research and Services (referred to in this section as the
National Network). The National Network shall provide resources
for, and facilitate communication between, autism spectrum disorder researchers
and service providers for individuals with autism spectrum disorders and their
families.
(c)The
purposes of the National Network are to—
(1)build upon the
infrastructure relating to autism spectrum disorders that exists on the date of
enactment of this Act;
(2)strengthen
linkages between autism spectrum disorders research and service initiatives at
the Federal, regional, State, and local levels;
(3)facilitate the
translation of research on autism spectrum disorders into services and
treatments to improve the quality of life for individuals with autism and their
families; and
(4)ensure the rapid
dissemination of evidence-based or promising autism spectrum disorder practices
through the National Data Repository for Autism Spectrum Disorders Research and
Services described in subsection (e).
(d)Organization
and activities of the National Network
(1)In establishing the National Network, the Secretary,
acting through Administrator of the Health Resources and Services
Administration, shall ensure that the National Network is composed of entities
at the Federal, regional, State, and local levels.
(2)Regional
leadership and organizationIn establishing the National Network,
the Secretary shall establish a Committee of Regional Leaders, which shall
ensure that regional participation is provided through the appointment of
regional leaders such as university- and community-based partnerships that
represent the needs and interests of regional stakeholders (including
individuals with autism spectrum disorders and their families, providers, and
researchers). The Committee of Regional Leaders shall be responsible for
monitoring, reporting, analyzing, and disseminating information in the Data
Repository described in subsection (e) to other stakeholders to ensure that the
information contained in such Data Repository is widely available to
policymakers and service providers at the State and local levels, and to
facilitate communication between various members of the National
Network.
(3)State and
community level leadership and organization
(A)The regional leaders appointed under paragraph (2)
shall appoint State directors who shall coordinate the activities of the
National Network at the State and community levels.
(B)State and
community subnetworksThe Secretary shall ensure that the State
directors establish State and community autism subnetworks, which shall engage
in a variety of frontline autism activities and provide services, including
comprehensive diagnostics, treatment, resource and referral, and support
programs, for individuals with autism spectrum disorders.
(e)National Data
Repository for Autism Spectrum Disorders Research and Services
(1)The Secretary shall establish a National Data Repository
for Autism Spectrum Disorders Research and Services (referred to in this
section as the Data Repository) and shall contract with one
eligible third-party entity to develop and administer such repository (referred
to in this section as the Data Repository Administrator). The Data
Repository shall be used to collect, store, and disseminate information
regarding research, data, findings, models of treatment, training modules, and
technical assistance materials related to autism spectrum disorders in order to
facilitate the development and rapid dissemination of research into best
practices that improve care.
(2)To
be eligible to receive the contract described in paragraph (1), an entity
shall—
(A)be a public or
private nonprofit entity; and
(B)have
experience—
(i)collecting
data;
(ii)developing
systems to store data in a secure manner that does not personally identify
individuals;
(iii)developing
internet web portals and other means of communicating with a wide audience;
and
(iv)making
information available to the public.
(3)The
Data Repository shall include—
(A)emerging
research, data, and findings regarding autism spectrum disorders from basic and
applied researchers and service providers;
(B)emerging or
promising models of treatment, service provision, and training related to
autism spectrum disorders that are developed in individual care centers or
programs; and
(C)training modules
and technical assistance materials.
(4)Duties of the
administratorThe Data Repository Administrator shall—
(A)collect
information from autism spectrum disorders research and service provision
agencies and organizations including—
(i)Centers of
Excellence in Autism Spectrum Disorder Epidemiology under section 399AA(b) of
the Public Health Service Act (42 U.S.C. 280i(b));
(ii)autism care
centers;
(iii)recipients of
grants through the grant program for adult services under section 399II of the
Public Health Service Act, as added by section 6 of this Act;
(iv)members and
recipients of the national training initiatives on autism spectrum disorders
under section 399LL of the Public Health Service Act, as added by section 11 of
this Act; and
(v)the
Committee of Regional Leaders, regional leaders, State directors, members of
State and community autism subnetworks, and other entities, as determined by
the Secretary;
(B)securely store
and maintain information in the Data Repository in a manner that does not
personally identify individuals;
(C)make information
in the Data Repository accessible through an Internet web portal or other
appropriate means of sharing information;
(D)ensure that the
information contained in the Data Repository is accessible to the National
Network, including health care providers, educators, and other autism spectrum
disorders service providers at the national, State, and local levels;
and
(E)provide a means
through the Internet web portal, or through other means, for members of the
National Network to share information, research, and best practices on autism
spectrum disorders.
(f)Amounts provided under this section shall be used to
supplement, not supplant, amounts otherwise expended for existing network or
organizational structures relating to autism spectrum disorders.
11.National
training initiatives on autism spectrum disordersPart R of title III of the Public Health
Service Act (42 U.S.C. 280i), as amended by section 8, is further amended by
adding at the end the following:
399LL.National
training initiatives on autism spectrum disorders
(a)National
training initiative supplemental grants
(1)The Secretary shall award multiyear national training
initiative supplemental grants to eligible entities so that such entities may
provide training and technical assistance and to disseminate information, in
order to enable such entities to address the unmet needs of individuals with
autism spectrum disorders and their families.
(2)To be eligible to receive assistance under this section an
entity shall—
(A)be a public or
private nonprofit entity, including University Centers for Excellence in
Developmental Disabilities and other service, training, and academic entities;
and
(B)submit an
application as described in paragraph (3).
(3)An
eligible entity that desires to receive a grant under this paragraph shall
submit to the Secretary an application containing such agreements and
information as the Secretary may require, including agreements that the
training program shall—
(A)provide trainees
with an appropriate balance of interdisciplinary academic and community-based
experiences;
(B)have a
demonstrated capacity to include individuals with autism spectrum disorders,
parents, and family members as part of the training program to ensure that a
person and family-centered approach is used;
(C)provide to the
Secretary, in the manner prescribed by the Secretary, data regarding the
outcomes of the provision of training and technical assistance;
(D)demonstrate a
capacity to share and disseminate materials and practices that are developed
and evaluated to be effective in the provision of training and technical
assistance; and
(E)provide
assurances that training, technical assistance, and information dissemination
performed under grants made pursuant to this paragraph shall be consistent with
the goals established under already existing disability programs authorized
under Federal law and conducted in coordination with other relevant State
agencies and service providers.
(4)An
entity that receives a grant under this section shall expand and develop
interdisciplinary training and continuing education initiatives for health,
allied health, and educational professionals by engaging in the following
activities:
(A)Promoting and
engaging in training for health, allied health, and educational professionals
to identify, diagnose, and develop interventions for individuals with, or at
risk of developing, autism spectrum disorders.
(B)Working to expand
the availability of training and information regarding effective, lifelong
interventions, educational services, and community supports, including specific
training for criminal justice system, emergency health care, legal, and other
mainstream first responder professionals, to identify characteristics of
individuals with autism spectrum disorders and to develop appropriate responses
and interventions.
(C)Providing
technical assistance in collaboration with relevant State, regional, or
national agencies, institutions of higher education, advocacy groups for
individuals with autism spectrum disorders and their families, or
community-based service providers.
(D)Developing
mechanisms to provide training and technical assistance, including for-credit
courses, intensive summer institutes, continuing education programs,
distance-based programs, and web-based information dissemination
strategies.
(E)Collecting data
on the outcomes of training and technical assistance programs to meet statewide
needs for the expansion of services to children with autism spectrum disorders
and adults with autism spectrum disorders.
(b)The Secretary shall reserve 2 percent of the
appropriated funds to make a grant to a national organization with demonstrated
capacity for providing training and technical assistance to the entities
receiving grants under subsection (a) to enable such entities to—
(1)assist in
national dissemination of specific information, including evidence-based and
promising best practices, from interdisciplinary training programs, and when
appropriate, other entities whose findings would inform the work performed by
entities awarded grants;
(2)compile and
disseminate strategies and materials that prove to be effective in the
provision of training and technical assistance so that the entire network can
benefit from the models, materials, and practices developed in individual
centers;
(3)assist in the
coordination of activities of grantees under this section;
(4)develop an
Internet web portal that will provide linkages to each of the individual
training initiatives and provide access to training modules, promising
training, and technical assistance practices and other materials developed by
grantees;
(5)convene experts
from multiple interdisciplinary training programs and individuals with autism
spectrum disorders and their families to discuss and make recommendations with
regard to training issues related to the assessment, diagnosis of, treatment,
interventions and services for, children with autism spectrum disorders and
adults with autism spectrum disorders; and
(6)undertake any
other functions that the Secretary determines to be appropriate.
(c)Amounts provided under this section shall be used to
supplement, not supplant, amounts otherwise expended for existing network or
organizational
structures.
.
12.Amendments
relating to health insurance
(a)
(1)Subpart B of part 7 of subtitle B of title I of the
Employee Retirement Income Security Act of 1974 (29 U.S.C. 1185 et seq.) is
amended by adding at the end the following:
715.Required
coverage for autism spectrum disorders
(a)A group health plan, and a health insurance issuer
providing health insurance coverage in connection with a group health plan,
shall provide coverage for the diagnosis of autism spectrum disorders and the
treatment of autism spectrum disorders.
(b)Nothing in this section shall be construed—
(1)as preventing a
group health plan or health insurance issuer from imposing financial
requirements or limits in relation to benefits for the diagnosis and treatment
of autism spectrum disorders, except that such financial requirements or limits
for any such benefits may not be less favorable to the individual than such
financial requirements or limits for substantially all other medical and
surgical benefits covered by the plan, and there shall be no separate financial
requirements or limits that are applicable only with respect to benefits for
the diagnosis or treatment of autism spectrum disorders; and
(2)to prevent a
group health plan or a health insurance issuer from negotiating the level and
type of reimbursement with a provider for care provided in accordance with this
section.
(c)Notice under
group health planThe
imposition of the requirements of this section shall be treated as a material
modification in the terms of the plan described in section 102(a)(1), for
purposes of assuring notice of such requirements under the plan, except that
the summary description required to be provided under the last sentence of
section 104(b)(1) with respect to such modification shall be provided not later
than the earlier of—
(1)60 days after the first day of the first
plan year in which such requirements apply; or
(2)in the first
mailing after the date of enactment of the Autism Treatment Acceleration Act of 2009
made by the plan or issuer to the participant or beneficiary.
(d)A
group health plan, and a health insurance issuer offering group health
insurance coverage in connection with a group health plan, shall not—
(1)deny to an
individual eligibility, or continued eligibility, to enroll or to renew
coverage under the terms of the plan, solely for the purpose of avoiding the
requirements of this section; or
(2)deny coverage
otherwise available under this section on the basis that such coverage will
not—
(A)develop skills or
functioning;
(B)maintain skills
or functioning;
(C)restore skills or
functioning; or
(D)prevent the loss
of skills or functioning.
(e)Preemption;
relation to State law
(1)Nothing in this section shall be construed to preempt any
State law (or cost sharing requirements under State law) with respect to health
insurance coverage that requires coverage of at least the coverage for autism
spectrum disorders otherwise required under this section.
(2)Nothing in this section shall be construed to affect or
modify the provisions of section 514 with respect to group health plans.
(f)In
this section:
(1)Autism spectrum
disordersThe term autism spectrum disorders means
developmental disabilities that cause substantial impairments in the areas of
social interaction, emotional regulation, communication, and the integration of
higher-order cognitive processes and which may be characterized by the presence
of unusual behaviors and interests. Such term includes autistic disorder,
pervasive developmental disorder (not otherwise specified), Asperger syndrome,
Retts disorder, and childhood disintegrative disorder.
(2)Diagnosis of
autism spectrum disordersThe term diagnosis of autism
spectrum disorders means medically necessary assessments, evaluations,
or tests to diagnose whether an individual has an autism spectrum
disorder.
(3)Treatment of
autism spectrum disordersThe term treatment of autism
spectrum disorders means the following care prescribed, provided, or
ordered for an individual diagnosed with an autism spectrum disorder by a
physician, psychologist, or other qualified professional who determines the
care to be medically necessary:
(A)Medications
prescribed by a physician and any health-related services necessary to
determine the need or effectiveness of the medications.
(B)Occupational
therapy, physical therapy, and speech therapy.
(C)Direct or
consultative services provided by a psychiatrist or psychologist.
(D)Professional,
counseling, and guidance services and treatment programs, including applied
behavior analysis and other structured behavioral programs. In this
subparagraph, the term applied behavior analysis means the design,
implementation and evaluation of environmental modifications, using behavioral
stimuli and consequences, to produce socially significant improvement in human
behavior, including the use of direct observation, measurement, and functional
analysis of the relationship between environment and behavior.
(E)Augmentative
communication devices and other assistive technology
devices.
.
(2)The table of contents in section 1 of the Employee
Retirement Income Security Act of 1974 (29 U.S.C. 1001 note) is amended by
inserting after the item relating to section 714 the following:
Sec. 715. Required coverage for
autism spectrum
disorders.
.
(b)Public Health
Service Act
(1)Subpart 2 of part A of title XXVII of the Public Health
Service Act (42 U.S.C. 300gg–4 et seq.) is amended by adding at the end the
following:
2708.Required
coverage for autism spectrum disorders
(a)A group health plan, and a health insurance issuer
providing health insurance coverage in connection with a group health plan,
shall provide coverage for the diagnosis of autism spectrum disorders and the
treatment of autism spectrum disorders.
(b)Nothing in this section shall be construed—
(1)as preventing a
group health plan or health insurance issuer from imposing financial
requirements or limits in relation to benefits for the diagnosis and treatment
of autism spectrum disorders, except that such financial requirements or limits
for any such benefits may not be less favorable to the individual than such
financial requirements or limits for substantially all other medical and
surgical benefits covered by the plan, and there shall be no separate financial
requirements or limits that are applicable only with respect to benefits for
the diagnosis or treatment of autism spectrum disorders; or
(2)to prevent a
group health plan or a health insurance issuer from negotiating the level and
type of reimbursement with a provider for care provided in accordance with this
section.
(c)Notice under
group health planThe
imposition of the requirements of this section shall be treated as a material
modification in the terms of the plan described in section 102(a)(1), for
purposes of assuring notice of such requirements under the plan, except that
the summary description required to be provided under the last sentence of
section 104(b)(1) with respect to such modification shall be provided not later
than the earlier of—
(1)60 days after the first day of the first
plan year in which such requirements apply; or
(2)in the first
mailing after the date of enactment of the Autism Treatment Acceleration Act of 2009
made by the plan or issuer to the enrollee.
(d)A
group health plan, and a health insurance issuer offering group health
insurance coverage in connection with a group health plan, shall not—
(1)deny to an
individual eligibility, or continued eligibility, to enroll or to renew
coverage under the terms of the plan, solely for the purpose of avoiding the
requirements of this section; or
(2)deny coverage
otherwise available under this section on the basis that such coverage will
not—
(A)develop skills or
functioning;
(B)maintain skills
or functioning;
(C)restore skills or
functioning; or
(D)prevent the loss
of skills or functioning.
(e)Preemption;
relation to State law
(1)Nothing in this section shall be construed to preempt any
State law (or cost sharing requirements under State law) with respect to health
insurance coverage that requires coverage of at least the coverage for autism
spectrum disorders otherwise required under this section.
(2)Nothing
in this section shall be construed to affect or modify the provisions of
section 514 of the Employee Income Retirement Security Act of 1974 with respect
to group health plans.
(f)In
this section:
(1)Autism spectrum
disordersThe term autism spectrum disorders means
developmental disabilities that cause substantial impairments in the areas of
social interaction, emotional regulation, communication, and the integration of
higher-order cognitive processes and which may be characterized by the presence
of unusual behaviors and interests. Such term includes autistic disorder,
pervasive developmental disorder (not otherwise specified), and Asperger
syndrome.
(2)Diagnosis of
autism spectrum disordersThe term diagnosis of autism
spectrum disorders means medically necessary assessments, evaluations,
or tests to diagnose whether an individual has an autism spectrum
disorder.
(3)Treatment of
autism spectrum disordersThe term treatment of autism
spectrum disorders means the following care prescribed, provided, or
ordered for an individual diagnosed with an autism spectrum disorder by a
physician, psychologist, or other qualified professional who determines the
care to be medically necessary:
(A)Medications
prescribed by a physician and any health-related services necessary to
determine the need or effectiveness of the medications.
(B)Occupational
therapy, physical therapy, and speech therapy.
(C)Direct or
consultative services provided by a psychiatrist or psychologist.
(D)Professional,
counseling, and guidance services and treatment programs, including applied
behavior analysis and other structured behavioral programs. In this
subparagraph, the term applied behavior analysis means the design,
implementation and evaluation of environmental modifications, using behavioral
stimuli and consequences, to produce socially significant improvement in human
behavior, including the use of direct observation, measurement, and functional
analysis of the relationship between environment and behavior.
(E)Augmentative
communication devices and other assistive technology
devices.
.
(2)Subpart 3 of part B of title XXVII of the Public Health
Service Act (42 U.S.C. 300gg–51 et seq.) is amended by adding at the end the
following:
2754.Required
coverage for autism spectrum disordersThe provisions of section 2708 shall apply
to health insurance coverage offered by a health insurance issuer in the
individual market in the same manner as they apply to health insurance coverage
offered by a health insurance issuer in connection with a group health plan in
the small or large group
market.
.
(c)
(1)
(A)The amendment made by subsection (a) shall apply to group
health plans for plan years beginning on or after the date of enactment of this
Act.
(B)Special rule
for collective bargaining agreementsIn the case of a group
health plan maintained pursuant to one or more collective bargaining agreements
between employee representatives and one or more employers, any plan amendment
made pursuant to a collective bargaining agreement relating to the plan which
amends the plan solely to conform to any requirement added by the amendment
made by subsections (a) and (b)(1) shall not be treated as a termination of
such collective bargaining agreement.
(2)The amendment made by subsection (b)(2) shall apply with
respect to health insurance coverage offered, sold, issued, renewed, in effect,
or operated in the individual market on or after the date of enactment of this
Act.
13.Authorization
of appropriationsThere are
authorized to be appropriated for fiscal years 2010 through 2014 such sums as
may be necessary to carry out this Act.