1.Short
title; table of contents
(a)This Act may be cited
as the Autism Services and Workforce
Acceleration Act of 2011
.
(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 Programs Demonstration Project.
Sec. 6. Planning and demonstration grants for services for
transitioning youth and adults.
Sec. 7. Multimedia campaign.
Sec. 8. National training initiatives on autism spectrum
disorders.
Sec. 9. 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. 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 2009 report
from the Centers for Disease Control and Prevention found that the prevalence
of autism spectrum disorders is estimated to be 1 in 110 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; public education
399GG.Except as otherwise provided, in this
subpart:
(1)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.
(2)The term affected individual means an
individual with an autism spectrum disorder.
(3)The
term autism means an autism spectrum disorder or a related
developmental disability.
(4)In this subpart, the term autism care
program means a program that is directed by a 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 program shall—
(A)incorporate the
attributes of the care management model;
(B)offer, through an
array of services 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)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 program, taking
into consideration cultural, regional, and geographical factors.
(6)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.
(7)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 individuals 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.
(8)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.
(9)The
term interventions means the educational methods and positive
behavioral support strategies designed to improve or ameliorate symptoms
associated with autism spectrum disorders.
(10)Personal care
coordinatorThe term personal 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 program; and
(B)has been trained
to coordinate and manage comprehensive autism care for the whole person.
(11)The
term project means the autism care program demonstration project
established under section 399GG–1.
(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.
.
5.Autism Care
Programs 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:
399GG–1.Autism
Care Programs demonstration project
(a)Not later than 1 year
after the date of enactment of the Autism
Services and Workforce Acceleration Act of 2011, 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 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 individuals;
(C)satisfaction of
individuals with autism spectrum disorders;
(D)communication
among autism spectrum disorder health care providers, behaviorists, educators,
specialists, hospitals, and other autism spectrum disorder care
providers;
(E)academic progress
of students with autism spectrum disorders;
(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, self-determination, and
employment and other related services; and
(2)to
decrease—
(A)inappropriate
emergency room utilization;
(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)coordinate
activities with the applicable University Centers for Excellence in
Developmental Disabilities, the Council on Developmental Disabilities, and the
Protection and Advocacy System;
(3)demonstrate a
capacity to provide services to individuals with developmental disabilities and
autism spectrum disorder;
(4)agree to
establish and implement treatments, interventions, and services that—
(A)enable targeted
beneficiaries to designate a personal care coordinator to be their source of
first contact and to recommend comprehensive and coordinated care for the whole
of the individual;
(B)provide 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)establish 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
programs to provide high-quality care, focusing on autism spectrum disorder
care, at the appropriate times and places and in a cost-effective
manner;
(D)work in
cooperation with hospitals, local public health departments, and the network of
patient-centered autism care programs, to coordinate and provide health
care;
(E)utilize health
information technology to facilitate the provision and coordination of health
care by network participants; and
(F)collaborate 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
(5)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 description of
the treatments, interventions, or services that are available to individuals
with autism in the State;
(D)a description of
the gaps in services that exist in different geographic segments of the
State;
(E)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);
(F)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;
(G)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;
(H)a description of
the ways in which access to such treatments and services may be sustained
following the Program period;
(I)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
(J)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
programs.
(e)
(1)Each recipient of a grant under this section shall
establish an autism care program advisory council, which shall advise the
autism care program 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 program 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 program 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 transitioning youth and
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:
399GG–2.Planning
and demonstration grants for services for transitioning youth and
adults
(a)
(1)The
Secretary shall establish the grants described in paragraph (2) in order to
enable selected eligible entities to provide appropriate services—
(A)to youth with
autism spectrum disorders who are transitioning from secondary education to
careers or postsecondary education (referred to in this section as
transitioning youth); and
(B)to adults with
autism spectrum disorders, including individuals who are typically underserved,
to enable such individuals to be as independent as possible.
(2)The
grants described in this paragraph are—
(A)a one-time,
single-year planning grant program for eligible entities; and
(B)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 life for transitioning youth and adults with autism spectrum
disorders, 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 program.
(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 transitioning youth and 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 transitioning youth and 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
individuals with autism spectrum disorders who receive such services;
(B)the number of
individuals and families who will be served by such grant, including an
estimate of the individuals 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 transitioning youth and 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:
399GG–3.
(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.
.
8.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 7, is further amended by
adding at the end the following:
399GG–4.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 training
and technical assistance in evidence-based practices of effective
interventions, services, treatments, and supports to children and adults on the
autism spectrum and their families, and evaluate the implementation of such
practices;
(B)provide trainees
with an appropriate balance of interdisciplinary academic and community-based
experiences;
(C)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;
(D)provide to the
Secretary, in the manner prescribed by the Secretary, data regarding the
outcomes of the provision of training and technical assistance;
(E)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
(F)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)Expanding the
availability of training and dissemination of information regarding effective,
lifelong interventions, educational services, and community supports.
(C)Providing
training and technical assistance in collaboration with relevant State,
regional, or national agencies, institutions of higher education, and advocacy
groups or community-based service providers, including health and allied health
professionals, employment providers, direct support professionals, emergency
first responder personnel, and law enforcement officials.
(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
programs;
(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 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.
.
9.Authorization of
appropriationsThere are
authorized to be appropriated for fiscal years 2012 through 2016 such sums as
may be necessary to carry out this Act.