42 USC 15092
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SEC. 202. FINDINGS, PURPOSES, AND POLICY.
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(a) FINDINGS.
-Congress makes the following findings:
(1) It is in the best interest of our Nation to preserve,
strengthen, and maintain the family.
(2) Families of children with disabilities provide support,
care, and training to their children that can save States millions of dollars.
Without the efforts of family caregivers, many persons with disabilities would
receive care through State-supported out-of-home placements.
(3) Most families of children with disabilities, especially
families in unserved and underserved populations, do not have access to
family-centered and family-directed services to support such families in their
efforts to care for such children at home.
(4) Medical advances and improved health care have increased
the life span of many people with disabilities, and the combination of the
longer life spans and the aging of family caregivers places a continually
increasing demand on the finite service delivery systems of the States.
(5) In 1996, 49 States provided family support initiatives in
response to the needs of families of children with disabilities. Such
initiatives included the provision of cash subsidies, respite care, and other
forms of support. There is a need in each State, however, to strengthen, expand,
and coordinate the activities of a system of family support services for
families of children with disabilities that is easily accessible, avoids
duplication, uses resources efficiently, and prevents gaps in services to
families in all areas of the State.
(6) The goals of the Nation properly include the goal of
providing to families of children with disabilities the family support services
necessary-
(A) to support the family;
(B) to enable families of children with disabilities to
nurture and enjoy their children at home;
(C) to enable families of children with disabilities to make
informed choices and decisions regarding the nature of supports, resources,
services, and other assistance made available to such families; and
(D) to support family caregivers of adults with
disabilities.
(
b) PURPOSES. -The
purposes of this title are-
(1) to promote and strengthen the implementation of
comprehensive State systems of family support services, for families with
children with disabilities, that are family-centered and family-directed, and
that provide families with the greatest possible decision making authority and
control regarding the nature and use of services and support;
(2) to promote leadership by families in planning, policy
development, implementation, and evaluation of family support services for
families of children with disabilities;
(3) to promote and develop interagency coordination and
collaboration between agencies responsible for providing the services; and
(4) to increase the availability of, funding for, access to,
and provision of family support services for families of children with
disabilities.
(c) POLICY.
It is the policy of the United States that all pro-grams,
projects, and activities funded under this title shall be family-centered and
family-directed, and shall be provided in a manner consistent with the goal of
providing families of children with disabilities with the support the families
need to raise their children at home.
SEC. 203. DEFINITIONS AND SPECIAL RULE.
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42 USC 15093
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(a) DEFINITIONS.-In this title:
(1) CHILD WITH A DISABILITY. -The term
''child with a disability'' means an individual who-
(A) has a significant physical or mental impairment, as
defined pursuant to State policy to the extent that such policy is established
without regard to type of disability; or
(B) is an infant or a young child from birth through age 8
and has a substantial developmental delay or specific congenital or acquired
condition that presents a high probability of resulting in a disability if
services are not provided to the infant or child.
(2) FAMILY.-
(A) IN GENERAL. -Subject to subparagraph (B), for purposes
of the application of this title in a State, the term ''family'' has the
meaning given the term by the State.
(B) EXCLUSION OF EMPLOYEES. -The term does not include an
employee who, acting in a paid employment capacity, provides services to a
child with a disability in an out-of-home setting such as a hospital, nursing
home, personal care home, board and care home, group home, or other facility.
(3) FAMILY SUPPORT FOR FAMILIES OF CHILDREN WITH DISABILITIES.
-The term ''family support for families of children with
disabilities'' means supports, resources, services, and other assistance
provided to families of children with disabilities pursuant to State policy that
are designed to-
(A) support families in the efforts of such families to
raise their children with disabilities in the home;
(B) strengthen the role of the family as primary caregiver
for such children;
(C) prevent involuntary out-of-the-home placement of such
children and maintain family unity; and
(D) reunite families with children with disabilities who
have been placed out of the home, whenever possible.
(4) SECRETARY. -The term ''Secretary''
means the Secretary of Health and Human Services.
(5) STATE. -The term ''State'' means
each of the 50 States of the United States, the District of Columbia, the
Common-wealth of Puerto Rico, the United States Virgin Islands, Guam, American
Samoa, and the Commonwealth of the Northern Mariana Islands.
(6) SYSTEMS CHANGE ACTIVITIES. -The term
''systems change activities'' means efforts that result in laws, regulations,
policies, practices, or organizational structures-
(A) that are family-centered and family-directed;
(B) that facilitate and increase access to, provision of,
and funding for, family support services for families of children with
disabilities; and
(C) that otherwise accomplish the purposes of this title.
(b) SPECIAL RULE.
-References in this title to a child with a disability
shall be considered to include references to an individual who is not younger
than age 18 who-
(1) has a significant impairment described in subsection
(a)(1)(A); and
(2) is residing with and receiving assistance
from a family member.
42 USC 15093
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SEC. 204. GRANTS TO STATES.
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(a) IN GENERAL. -The Secretary
shall make grants to States on a competitive basis, in accordance with the
provisions of this title, to support systems change activities designed to
assist States to develop and implement, or expand and enhance, a statewide
system of family support services for families of children with disabilities
that accomplishes the purposes of this title.
(b) AWARD PERIOD AND GRANT LIMITATION. -No
grant shall be awarded under this section for a period of more than 3 years. No
State shall be eligible for more than 1 grant under this section.
(c) AMOUNT OF GRANTS.-
(1) GRANTS TO STATES.-
(A) FEDERAL MATCHING SHARE.-From amounts appropriated under
section 212(a), the Secretary shall pay to each State that has an application
approved under section 205, for each year of the grant period, an amount that
is-
(i) equal to not more than 75 percent of the cost of the
systems change activities to be carried out by the State; and
(ii) not less than $100,000 and not more than $500,000.
(B) NON-FEDERAL SHARE. -The non-Federal share of the cost of
the systems change activities may be in cash or in kind, fairly evaluated,
including plant, equipment, or services.
(2) CALCULATION OF AMOUNTS. -The
Secretary shall calculate a grant amount described in paragraph (1) on the basis
of-
(A) the amounts available for making grants under this
section; and
(B) the child population of the State concerned.
(d) PRIORITY FOR PREVIOUSLY PARTICIPATING STATES.
-For the second and third fiscal years for which amounts
are appropriated to carry out this section, the Secretary, in providing payments
under this section, shall give priority to States that received payments under
this section during the preceding fiscal year.
(e) PRIORITIES FOR DISTRIBUTION. -To
the extent practicable, the Secretary shall award grants to States under this
section in a manner that-
(1) is geographically equitable;
(2) distributes the grants among States that have differing
levels of development of statewide systems of family support services for
families of children with disabilities; and
(3) distributes the grants among States that attempt to meet
the needs of unserved and underserved populations, such as individuals from
racial and ethnic minority backgrounds, disadvantaged individuals, individuals
with limited English proficiency, and individuals from underserved geographic
areas (rural or urban).
SEC. 205. APPLICATION.
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42 USC 15094
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To be eligible to receive a grant under this title, a State
shall submit an application to the Secretary at such time, in such manner, and
containing such information and assurances as the Secretary may require,
including information about the designation of a lead entity, a description of
available State resources, and assurances that systems change activities will be
family-centered and family-directed.
SEC. 206. DESIGNATION OF THE LEAD ENTITY.
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42 USC 15095
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(a) DESIGNATION. -The Chief
Executive Officer of a State that desires to receive a grant under section 204,
shall designate the office or entity (referred to in this title as the ''lead
entity'') responsible for-
(1) submitting the application described in section 205 on
behalf of the State;
(2) administering and supervising the use of the amounts made
available under the grant;
(3) coordinating efforts related to and supervising the
preparation of the application;
(4) coordinating the planning, development, implementation (or
expansion and enhancement), and evaluation of a state-wide system of family
support services for families of children with disabilities among public
agencies and between public agencies and private agencies, including
coordinating efforts related to entering into interagency agreements;
(5) coordinating efforts related to the participation by
families of children with disabilities in activities carried out under a grant
made under this title; and
(6) submitting the report described in section 208 on behalf
of the State.
(b) QUALIFICATIONS. -In
designating the lead entity, the Chief Executive Officer may designate-
(1) an office of the Chief Executive Officer;
(2) a commission appointed by the Chief Executive Officer;
(3) a public agency;
(4) a council established under Federal or State law; or
(5) another appropriate office, agency, or entity.
42 USC 15096
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SEC. 207. AUTHORIZED ACTIVITIES.
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(a) IN GENERAL. -A State that
receives a grant under section 204 shall use the funds made available through
the grant to carry out systems change activities that accomplish the purposes of
this title.
(b) SPECIAL RULE. -In
carrying out activities authorized under this title, a State shall ensure that
such activities address the needs of families of children with disabilities from
unserved or underserved populations.
42 USC 15097
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SEC. 208. REPORTING.
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A State that receives a grant under this title
shall prepare and submit to the Secretary, at the end of the grant period, a
report containing the results of State efforts to develop and implement, or
expand and enhance, a statewide system of family support services for families
of children with disabilities.
42 USC 15098
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SEC. 209. TECHNICAL ASSISTANCE.
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Contracts
(a) IN GENERAL. -The
Secretary shall enter into contracts or cooperative agreements with appropriate
public or private agencies and organizations, including institutions of higher
education, with documented experience, expertise, and capacity, for the purpose
of providing technical assistance and information with respect to the
development and implementation, or expansion and enhancement, of a statewide
system of family support services for families of children with disabilities.
(b) PURPOSE.
-An agency or organization that provides technical
assistance and information under this section in a State that receives a grant
under this title shall provide the technical assistance and information to the
lead entity of the State, family members of children with disabilities,
organizations, service providers, and policymakers involved with children with
disabilities and their families. Such an agency or organization may also provide
technical assistance and information to a State that does
not receive a grant under this title.
(c) REPORTS TO THE SECRETARY. -An entity
providing technical assistance and information under this section shall prepare
and submit to the Secretary periodic reports regarding Federal policies and
procedures identified within the States that facilitate or impede the delivery
of family support services to families of children with disabilities. The report
shall include recommendations to the Secretary regarding the delivery of
services, coordination with other programs, and integration of the policies
described in section 202 in Federal law, other than this title.
SEC. 210. EVALUATION.
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42 USC 15099
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(a) IN GENERAL.
-The Secretary shall conduct a national evaluation of the program of grants to
States authorized by this title.
(b) PURPOSE.-
(1) IN GENERAL. -The Secretary shall
conduct the evaluation under subsection (a) to assess the status and effects of
State efforts to develop and implement, or expand and enhance, statewide systems
of family support services for families of children with disabilities in a
manner consistent with the provisions of this title. In particular, the
Secretary shall assess the impact of such efforts on families of children with
disabilities, and recommend amendments to this title that are necessary to
assist States to accomplish fully the purposes of this title.
(2) INFORMATION SYSTEMS.
-The Secretary shall work with the States to develop an
information system designed to compile and report, from information provided by
the States, qualitative and quantitative descriptions of the impact of the
program of grants to States authorized by this title on-
(A) families of children with disabilities, including
families from unserved and underserved populations;
(B) access to and funding for family support services for
families of children with disabilities;
(C) interagency coordination and collaboration between
agencies responsible for providing the services; and
(D) the involvement of families of children with
disabilities at all levels of the statewide systems.
(c) REPORT TO CONGRESS.
-Not later than 2 1 /2 years after the date of enactment
of this Act, the Secretary shall prepare and submit to the appropriate
committees of Congress a report concerning the results of the evaluation
conducted under this section.
SEC. 211. PROJECT OF NATIONAL SIGNIFICANCE.
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42 USC 15100
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