I 113th CONGRESS 2d Session H. R. 4010 IN THE HOUSE OF REPRESENTATIVES February 6, 2014 Mr. Cartwright introduced the following bill; which was referred to the Committee on Energy and Commerce A BILL To provide for enhanced treatment, support, services, and research for individuals with autism spectrum disorders and their families.

1. Short title; table of contents (a) Short title This Act may be cited as the Autism Services and Workforce Acceleration Act of 2014 . (b) Table of contents 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. Findings 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 construction Nothing 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 Act Part 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: 1 Surveillance 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: 2 Care for people with autism spectrum disorders; public education 399GG. Definitions Except as otherwise provided, in this subpart: (1) Adult with autism spectrum disorder The term adult with autism spectrum disorder means an individual with an autism spectrum disorder who has attained 22 years of age. (2) Affected individual The term affected individual means an individual with an autism spectrum disorder. (3) Autism The term autism means an autism spectrum disorder or a related developmental disability. (4) Autism care program 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) Autism management team 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) Autism spectrum disorder 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) Care management model 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 disorder The term child with autism spectrum disorder means an individual with an autism spectrum disorder who has not attained 22 years of age. (9) Interventions 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 coordinator The 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) Project The term project means the autism care program demonstration project established under section 399GG–1. (12) Services 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) Treatments 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 Project Part 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) In general Not later than 1 year after the date of enactment of the Autism Services and Workforce Acceleration Act of 2014 , 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) Goals 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) Eligible entities 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) Grants 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) Advisory councils (1) In general 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) Membership 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) Chairperson 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) Evaluation 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) Administrative expenses 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) Supplement not supplant 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 adults Part 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) In general (1) Establishment 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) Grants 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) Purpose of grants 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) Eligible entity 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) Planning grants (1) In general 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) Application 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) Implementation grants (1) In general 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) Application 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) Evaluation 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) Administrative expenses 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) Supplement, not supplant Demonstration grant funds provided under this section shall supplement, not supplant, existing treatments, interventions, and services for individuals with autism spectrum disorders. . 7. Multimedia campaign 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. Multimedia campaign (a) In general 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) Eligibility 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 disorders 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: 399GG–4. National training initiatives on autism spectrum disorders (a) National training initiative supplemental grants (1) In general 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) Eligible entity 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) Requirements 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) Activities 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) Technical assistance 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) Supplement not supplant Amounts provided under this section shall be used to supplement, not supplant, amounts otherwise expended for existing network or organizational structures. . 9. Authorization of appropriations There are authorized to be appropriated for fiscal years 2015 through 2019 such sums as may be necessary to carry out this Act.