Is there a backup plan for the Combating Autism Reauthorization Act?

7 Jul

On May 26th, Representative Christopher Smith of New Jersey introduced House Resolution 2005: the Combating Autism Reauthorization Act of 2011 (CARA). This has some momentum, with 38 cosponsors in the house (there are another 21 sponsors in the Senate).

What I found interesting when I searched for the CARA that there are two more bills in the works on autism (both introduced on the same day as CARA): the National Autism Spectrum Disorders Initiative Act of 2011 and the Autism Spectrum Disorders Services Act of 2011.

The Text is below. They are modifications to existing laws, so being out of context they aren’t obvious as to what they are accomplishing. But we can see a few things. The National Autism Spectrum Disorders Initiative Act of 2011 is more thorough. For example, it is the one of the two bills that includes funding levels. The National Autism Spectrum Disorders Initiative Act of 2011 does not authorize money to be appropriated.

The National Autism Spectrum Disorders Initiative Act of 2011 would put coordination of autism research directly under the Secretary of Health and Human Services. The Autism Spectrum Disorders Services Act of 2011 continues the Interagency Autism Coordinating Committee, which currently coordinates autism research in the United States.

Here is bill H.R.2006, (House Resolution 2006),

H.R.2006 — National Autism Spectrum Disorders Initiative Act of 2011 (Introduced in House – IH)

HR 2006 IH

112th CONGRESS

1st Session

H. R. 2006

To establish a National Autism Spectrum Disorders Initiative , and for other purposes.

IN THE HOUSE OF REPRESENTATIVES

May 26, 2011

Mr. SMITH of New Jersey (for himself and Mr. DOYLE) introduced the following bill; which was referred to the Committee on Energy and Commerce

A BILL

To establish a National Autism Spectrum Disorders Initiative , and for other purposes.

Be it enacted by the Senate and House of Representatives of the United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

This Act may be cited as the `National Autism Spectrum Disorders Initiative Act of 2011 ‘.

SEC. 2. ESTABLISHMENT OF THE NATIONAL AUTISM SPECTRUM DISORDERS INITIATIVE .

Part R of title III of the Public Health Service Act (42 U.S.C. 280i et seq.) is amended–

(1) by redesignating section 399E (42 U.S.C. 280i-4) as section 399FF; and

(2) by inserting after section 399DD the following:

`SEC. 399EE. ESTABLISHMENT OF THE NATIONAL AUTISM SPECTRUM DISORDERS INITIATIVE .

`(a) In General- There is established in the Office of the Secretary of Health and Human Services the National Autism Spectrum Disorders Initiative (referred to in this Act as the `Initiative’ ). The principal goal of the Initiative is to improve the lives of persons with autism spectrum disorders through research focused on prevention, treatment, services, and cures.

`(b) Duties of the Secretary Under the Initiative – The Secretary (or the Secretary’s designee) shall–

`(1) act as the primary Federal official with responsibility for overseeing all research on autism spectrum disorders conducted or supported by the National Institutes of Health;

`(2) approve the strategic plan described in section 399CC(b)(5) and be responsible for its implementation;

`(3) receive directly from the President and the Director of the Office of Management and Budget all funds available for autism spectrum disorder activities of the National Institutes of Health;

`(4) from the amounts received under paragraph (3) for the fiscal year, allocate, in consultation with the Director of the National Institutes of Health, to the agencies of the National Institutes of Health in accordance with the strategic plan all amounts available for such year for carrying out autism spectrum disorder activities;

`(5) to the extent practicable, allocate amounts under paragraph (4) not later than 30 days after the date on which the Secretary receives the amounts described under paragraph (3);

`(6) have authority to reallocate up to 3 percent of the total amount allocated under paragraph (4) as needs change and opportunities arise;

`(7) plan and evaluate research and other activities related to autism spectrum disorders conducted or supported by the agencies of the National Institutes of Health, evaluating the activities of each of such agencies and providing for the periodic reevaluation of such activities;

`(8) maintain communications with all relevant departments and agencies of the Federal Government to ensure the timely transmission of information concerning autism spectrum disorders ; and

`(9) carry out this subsection in consultation with the heads of the agencies of the National Institutes of Health, with the advisory councils of such agencies, and with the Interagency Autism Coordinating Committee.

`(c) Sunset Provision- This section shall not apply after the date that is 7 years after the date of the enactment of this section.’.

SEC. 3. ACTIVITIES OF THE NATIONAL INSTITUTES OF HEALTH WITH RESPECT TO AUTISM SPECTRUM DISORDERS .

Section 409C of the Public Health Service Act (42 U.S.C. 284g) is amended–

(1) in subsection (a)(1), by striking `basic and clinical research’ and inserting `basic, clinical, and translational research’;

(2) in subsection (b)–

(A) in paragraph (2)–

(i) by striking `basic and clinical research’ and inserting `basic, clinical, and translational research’; and

(ii) by inserting `, building upon the recommendations set forth in the most recent strategic plan for autism spectrum disorders of the Interagency Autism Coordinating Committee established under section 399CC’ before the period at the end of the second sentence; and

(B) by adding at the end the following:

`(6) DEFINITION- In this section, the term `translational’, with respect to research, means emphasizing the development and delivery of effective new therapies to patients.’; and

(3) in subsection (c), by inserting `, biosamples relevant to environmental exposures,’ after `tissues’.

SEC. 4. CLARIFYING AMENDMENTS WITH RESPECT TO AUTISM INTERVENTION.

Section 399BB(f) of the Public Health Service Act (42 U.S.C. 280i-1(f)) is amended–

(a) by inserting `to research networks’ after `contracts’; and

(b) by striking `interventions for individuals’ and inserting `interventions to improve the physical and behavioral health and well-being of individuals’.

Here is bill H.R.2007, (House Resolution 2007), Autism Spectrum Disorders Services Act of 2011:

SEC. 2. INTERAGENCY AUTISM COORDINATING COMMITTEE.

Section 399CC of the Public Health Service Act (42 U.S.C. 280i-2) is amended–

(1) in subsection (a), by striking `within the Department of Health and Human Services’ and inserting `of Federal agencies’;

(2) in subsection (b)–

(A) in paragraph (1), by inserting `and the families of such individuals’ before the semicolon at the end;

(B) in paragraph (2)–

(i) by inserting `, evaluate, and assess’ after `monitor’; and

(ii) by inserting `and facilitate collaboration among Federal agencies regarding such activities’ before the semicolon at the end;

(C) in paragraph (3), by inserting `and other appropriate Federal Government department and agency heads’ after `Secretary’;

(D) in paragraph (4), by inserting `and other appropriate Federal Government department and agency heads’ after `Secretary’;

(E) in paragraph (5), by inserting `and services and supports for individuals with autism spectrum disorder and the families of such individuals’ after `research’; and

(F) in paragraph (6), by striking `submit to the Congress’ and inserting `submit to the President, who shall review and transmit to Congress,’;

(3) in subsection (c)–

(A) in paragraph (1) in subparagraph (D), by inserting `, the Department of Defense, the National Council on Disability, the Department of Housing and Urban Development, the Department of Justice, and the Department of Labor’ before the semicolon at the end;

(B) in paragraph (2)–

(i) in the matter preceding subparagraph (A), by striking `fewer than 6 members of the Committee, or 1/3 of the total membership of the Committee, whichever is greater,’ and inserting `less than 1/2 of the total membership of the Committee’;

(ii) in subparagraph (A), by striking `one such member shall be an individual’ and inserting `2 such members shall be individuals’;

(iii) in subparagraph (B)–

(I) by striking `one such member shall be a parent or legal guardian’ and inserting `2 such members shall be a parent or a legal guardian’; and

(II) by striking `and’ at the end;

(iv) in subparagraph (C)–

(I) by striking `one such member shall be a representative’ and inserting `2 such members shall be representatives’; and

(II) by striking the period at the end and inserting `; and’; and

(v) by adding at the end the following:

`(D) at least 2 such members shall be clinicians who treat individuals with autism spectrum disorder.’;

(4) in subsection (d) in paragraph (2), by inserting `, except that the term of any member appointed under subsection (c)(2)(C) shall expire if such member no longer represents the organization described in such subsection’ after `additional 4 year term’;

(5) in subsection (e), by striking the first sentence and inserting `In carrying out its functions, the Committee may convene workshop and conferences. The Committee shall establish a subcommittee on research on autism spectrum disorders, a subcommittee on services and supports for individuals with autism spectrum disorders and the families of such individuals, and such other subcommittees as the Committee determines appropriate. Such subcommittees shall vote separately on matters within their respective jurisdictions.’; and

(6) by adding at the end the following:

`(f) Report- Not later than 1 year after the date of enactment of the Autism Spectrum Disorders Services Act of 2011 and annually thereafter, the Comptroller General of the United States shall submit a report to Congress concerning the progress of the Federal Government in implementing the strategic plan for autism spectrum disorder research and services and supports for individuals with autism spectrum disorder and the families of such individuals.’.

SEC. 3. SERVICES FOR INDIVIDUALS WITH AUTISM SPECTRUM DISORDERS.

Part R of title III of the Public Health Service Act (42 U.S.C. 280i et seq.) is amended–

(1) by redesignating section 399EE (relating to authorization of appropriaations) as section 399FF; and

(2) by inserting after section 399DD the following:

`SEC. 399EE. PLANNING AND DEMONSTRATION GRANT FOR SERVICES FOR CHILDREN, TRANSITIONING YOUTH, AND ADULTS.

`(a) In General- To assist selected eligible entities in providing appropriate services to children, youth with autism spectrum disorders who are transitioning from secondary education to careers or postsecondary education (referred to in this section as `transitioning youth’), adults with autism spectrum disorders, and individuals of any age with autism spectrum disorders who may be at risk due to behavioral and preventable environmental factors, such as wandering (referred to in this section as `individuals at risk’), 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) 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 critical aspects of life for children, transitioning youth, and adults with autism spectrum disorders (including adults not eligible for developmental disability services provided by a State), such as–

`(1) postsecondary education, peer support, vocational training, self-advocacy skills, and employment;

`(2) community-based behavioral supports and interventions;

`(3) residential services, housing, and transportation;

`(4) nutrition, health and wellness, and recreational and social activities; and

`(5) personal safety for individuals at risk 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 a State Council on Developmental Disabilities, as defined in section 102 of the Developmental Disabilities Assistance and Bill of Rights Act of 2000.

`(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 children, individuals at risk, 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 applicable State Council on Developmental Disabilities and organizations representing or serving individuals with autism spectrum disorders and the families of such individuals.

`(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 children, individuals at risk, 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 the individuals who receive such services;

`(B) the number of individuals who will be served by such grant, including an estimate of the individuals 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 children, 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 the capacity of such entity 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 individuals who receive such services;

`(F) where applicable, 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 under section 302 of the Americans With Disabilities Act of 1990; 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 safety, health, education, employment, and community integration outcomes 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.

`SEC. 399EE-1. NATIONAL TECHNICAL ASSISTANCE CENTER FOR AUTISM TREATMENTS, INTERVENTIONS, AND SERVICES.

`(a) Establishment of National Technical Assistance Center for Autism Treatments, Interventions, and Services- The Secretary shall award a grant to a national nonprofit organization for the establishment and maintenance of a national technical assistance center.

`(b) Eligibility- An organization shall be eligible to receive a grant under subsection (a) if the organization–

`(1) has demonstrated knowledge and expertise in serving children with autism and adults with autism and the families of such individuals;

`(2) has demonstrated knowledge of how to translate research to practice, and present information in a way that is easily accessible and understandable to the family members of individuals with autism ;

`(3) has demonstrated capacity of training educators, health care providers, family members, and others to support the needs of individuals with autism ;

`(4) has demonstrated capacity of disseminating information throughout the United States; and

`(5) has demonstrated capacity to establish and maintain a Web site through which to disseminate information in an easily accessible manner.

`(c) Use of Funds- The national technical assistance center established under this section shall–

`(1) gather and disseminate information on evidence-based treatments, interventions, and services for children with autism and adults with autism , including best practices in delivering such treatments, interventions, and services, and make this information available to State agencies with responsibilities under section 399BB(c)(2), local communities, and individuals;

`(2) gather and disseminate information on activities of the Interagency Autism Coordinating Committee established under section 399CC;

`(3) provide analysis of activities funded under the Autism Spectrum Disorders Services Act of 2011, including–

`(A) the effectiveness of State and community-based models for delivering comprehensive services to individuals with autism ;

`(B) identification and dissemination of best practices emerging from States, community-based organizations, nonprofit providers, and local governments receiving demonstration grants under this subpart;

`(C) the State-by-State availability of, and gaps in, services for individuals with autism spectrum disorders, including information on services or service gaps in rural areas; and

`(D) levels of funding and funding sources of services for individuals with autism spectrum disorders in States;

`(4) provide technical assistance to States and organizations funded under this part;

`(5) gather and disseminate information about autism spectrum disorders;

`(6) establish and maintain a Web site through which to disseminate the information gathered under this section in an easily accessible manner;

`(7) establish partnerships with advocacy organizations to disseminate accurate information on education, service-provision, and support options and provide assistance in navigating service-provision systems; and

`(8) gather and disseminate other information as determined appropriate by the Secretary.’.

SEC. 4. AUTHORIZATION OF APPROPRIATIONS.

Section 399FF of the Public Health Service Act (42 U.S.C. 240i-4), as redesignated by section 3(1), is amended by adding at the end the following:

`(d) Planning and Demonstration Grant for Services for Children, Transitioning Youth, and Adults- To carry out section 399EE, there are authorized to be appropriated the following:

`(1) For fiscal year 2012, $80,000,000.

`(2) For fiscal year 2013, $90,000.000.

`(3) For fiscal year 2014, $100,000,000.

`(4) For fiscal year 2015, $110,000,000.

`(5) For fiscal year 2016, $120,000,000.

`(e) National Technical Assistance Center for Autism Treatments, Interventions, and Services- To carry out section 399EE-1, there are authorized to be appropriated the following:

`(1) For fiscal year 2012, $2,000,000.

`(2) For fiscal year 2013, $2,100,000.

`(3) For fiscal year 2014, $2,200,000.

`(4) For fiscal year 2015, $2,300,000.

`(5) For fiscal year 2016, $2,400,000.’.

SEC. 5. GAO STUDY ON SERVICE PROVISION AND FINANCING.

Not later than 1 year after the date of enactment of this Act, the Comptroller General of the United States shall release a report that examines the following issues:

(1) The ways in which autism services and treatments are currently financed in the United States.

(2) Current policies for public and private health insurance coverage of autism treatments, interventions, and services.

(3) Geographic and regional disparities in provision of services across the lifespan of individuals with autism , levels of community-based versus institutional services, and coverage for such services.

(4) Ways in which to improve financing of autism treatments, interventions, and services, so as to ensure a minimum level of coverage across the United States.

(5) Gaps in financing and availability of services for adults on the autism spectrum, focusing particularly on the needs of adults not eligible for developmental disability services provided by the State.

(6) Areas of need to improve the quality of services available to individuals on the autism spectrum in cross-disability contexts, such as vocational rehabilitation and centers for independent living.

(7) Findings from replicable studies that indicate an increased risk of mortality for individuals with autism due to preventable circumstances such as wandering, exposure, drowning, and untreated seizure disorders.

SEC. 6. EMERGING NEEDS PROTECTION AND ADVOCACY PROGRAM FOR INDIVIDUALS WITH AUTISM SPECTRUM DISORDERS.

(a) Initiatives on Autism Spectrum Disorders- Title I of the Developmental Disabilities Assistance and Bill of Rights Act of 2000 (42 U.S.C. 15001 et seq.) is amended by adding at the end the following:

`Subpart F–Initiatives on Autism Spectrum Disorders

`SEC. 171. EMERGING NEEDS PROTECTION AND ADVOCACY PROGRAM.

`(a) In General- The Secretary shall make grants to protection and advocacy systems for the purpose of enabling such systems to address the needs of individuals with autism spectrum disorders.

`(b) Services Provided- Services provided under this section may include the provision of–

`(1) information, referrals, and advice;

`(2) individual and family advocacy;

`(3) legal representation;

`(4) specific assistance in self-advocacy and assistance in capacity building for organizations that advocate on behalf of individuals with autism spectrum disorder; or

`(5) training to individuals with autism spectrum disorders, the families of such individuals, or advocates for individuals with autism spectrum disorders.

`(c) Eligibility- To be eligible to receive a grant under this section, a protection and advocacy system shall–

`(1) have the right and authority to investigate incidents of abuse and neglect of youth and adults with autism spectrum disorders if the incidents are reported to the protection and advocacy system or if there is probable cause to believe that the incidents occurred;

`(2) have the right and authority to pursue administrative, legal, and other appropriate remedies and approaches to ensure the protection of youth and adults with autism spectrum disorders; and

`(3) have the rights and authorities, including access authority, described in section 143 of this Act and section 105 of the Protection and Advocacy for Individuals with Mental Illness Act.

`(d) Grant Amounts- The Secretary shall make grants under this section during each fiscal year beginning on October 1 to protection and advocacy systems as follows:

`(1) APPROPRIATIONS LESS THAN $6,700,000- With respect to any fiscal year for which the amount appropriated under subsection (i) is less than $6,700,000, the Secretary shall make grants from such amount to protection and advocacy systems that apply for a grant under this section in the amounts described in paragraph (3).

`(2) APPROPRIATIONS OF $6,700,000 OR MORE-

`(A) IN GENERAL- With respect to any fiscal year for which the amount appropriated under subsection (i) is $6,700,000 or more, the Secretary shall make grants from such amount to protection and advocacy systems under this section in accordance with subparagraph (B).

`(B) AMOUNT OF GRANT- Subject to paragraph (3), the amount of a grant to a protection and advocacy system under subparagraph (A) shall be equal to an amount bearing the same ratio to the total amount appropriated for the fiscal year involved as the population of the State, Territory, or Consortium in which the grantee is located bears to the cumulative population of all States, Territories, and the Consortium that receive such grants.

`(3) MINIMUM AMOUNTS-

`(A) IN GENERAL- The amount of a grant under this section shall not be less than–

`(i) in the case of a protection and advocacy system located in a State, $120,000; and

`(ii) in the case of a protection and advocacy system located in a Territory or Consortium, $60,000.

`(B) ADJUSTMENTS TO MINIMUM AMOUNTS-

`(i) IN GENERAL- In the case of a fiscal year (referred to in this subparagraph as the `current fiscal year’) in which the total amount appropriated under subsection (i) is $10,000,000 or more, and such amount appropriated exceeds the total amount appropriated under such subsection for the preceding fiscal year, the Secretary shall increase the minimum grant amounts under subparagraph (A) by a percentage equal to the percentage by which the total amount appropriated for the current fiscal year exceeds the amount appropriated for the previous fiscal year.

`(ii) EXCEPTION- Clause (i) shall not apply in the case that the total amount appropriated for the current fiscal year is less than the amount appropriated for any fiscal year in the period between the date of enactment of the Combating Autism Reauthorization Act of 2011 and such current fiscal year.

`(C) APPLICABILITY OF ADJUSTMENTS- An increase in the minimum grant amounts under subparagraph (B) shall be effective for each subsequent fiscal year.

`(4) LOWER APPROPRIATION YEARS- In the case of a fiscal year for which the amount appropriated under subsection (i) is insufficient to satisfy the requirements of paragraph (3) for each protection and advocacy system that applies for a grant under this section, the Secretary shall award grants in the amounts described in paragraph (3) to as many protection and advocacy systems as the amount appropriated allows.

`(5) DEFINITIONS- For purposes of this subsection and subsection (e):

`(A) CONSORTIUM- The term `Consortium’ means an American Indian Consortium, as defined in section 102(1).

`(B) STATE- The term `State’ means each of the 50 States of the United States, the District of Columbia, and the Commonwealth of Puerto Rico.

`(C) TERRITORY- The term `Territory’ means American Samoa, the Commonwealth of the Northern Mariana Islands, Guam, and the United States Virgin Islands.

`(e) Carryover- Any amount paid to a protection and advocacy system that serves a Consortium, State, or Territory for a fiscal year under this section that remains unobligated at the end of such fiscal year shall remain available to such system for obligation during the next fiscal year for the purposes for which such amount was originally provided.

`(f) Direct Payment- Notwithstanding any other provision of law, the Secretary shall pay directly to any protection and advocacy system that complies with the provisions of this section, the total amount of the grant for such system, unless the system provides otherwise for such payment.

`(g) Administrative, Reporting, and Oversight Requirements- To the extent practicable, reporting, monitoring, program financing, and other administrative and oversight requirements established by the Secretary under this section shall be consistent with the other administrative, reporting, and oversight requirements for a protection and advocacy system.

`(h) Annual Report- Each protection and advocacy system that receives a payment under this section shall submit an annual report to the Secretary concerning the services provided to individuals with autism spectrum disorders by such system.

`(i) Authorization of Appropriations- To carry out this section, there are authorized to be appropriated the following:

`(1) For fiscal year 2012, $8,000,000.

`(2) For fiscal year 2013, $9,000,000.

`(3) For fiscal year 2014, $10,000,000.

`(4) For fiscal year 2015, $11,000,000.

`(5) For fiscal year 2016, $12,000,000.

`(j) Definition- In this section, the term `protection and advocacy system’ means a protection and advocacy system established under section 143.

`(k) Technical Assistance-

`(1) APPROPRIATIONS OF LESS THAN $6,750,000- For a fiscal year for which the amount appropriated to carry out this section is less than $6,750,000, the Secretary shall set aside the greater of–

`(A) 1 percent of the funds appropriated; or

`(B) $25,000, to make a grant to a national organization with experience in providing training and technical assistance to protection and advocacy systems to provide such training and technical assistance.

`(2) APPROPRIATIONS OF NOT LESS THAN $6,750,000- For a fiscal year for which the amount appropriated to carry out this section is not less than $6,750,000, the Secretary shall set aside 2 percent of the funds appropriated to make a grant to a national organization with experience in providing training and technical assistance to protection and advocacy systems to provide such training and technical assistance.

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