Administration on Developmental Disabilities: DD ACT Part II

Children With Families of Disabilities Support Act of 2000.

TITLE II--FAMILY SUPPORT

SEC. 201. SHORT TITLE. 42 USC 150001

note. This title may be cited as the ''Families of Children With

Disabilities Support Act of 2000''.

42 USC 15092 SEC. 202. FINDINGS, PURPOSES, AND POLICY.

(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

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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 decisionmaking 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. 42 USC 15093

(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

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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;

(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

(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 SEC. 204. GRANTS TO STATES.

(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.

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(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.

(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. 42 USC 15094

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. 42 USC 15095

(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-

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(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 SEC. 207. AUTHORIZED ACTIVITIES.

(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 SEC. 208. REPORTING.

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 SEC. 209. TECHNICAL ASSISTANCE.

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

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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. 42 USC 15099

(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;

(D) the involvement of families of children with disabilities at all levels of the statewide systems.

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. 42 USC 15100

(a) STUDY BY THE SECRETARY. -The Secretary shall review Federal programs to determine the extent to which such programs facilitate or impede access to, provision of, and funding for family support services for families of children with disabilities, consistent with the policies described in section 202.

(b) PROJECTS OF NATIONAL SIGNIFICANCE. -The Secretary shall make grants or enter into contracts for projects of national significance to support the development of national and State policies and practices related to the development and implementation, or expansion and enhancement, of family-centered and family-directed systems of family support services for families of children with disabilities.

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(a) IN GENERAL. -There are authorized to be appropriated to carry out this title such sums as may be necessary for each of fiscal years 2001 through 2007.

(b) RESERVATION.-

(1) IN GENERAL. -The Secretary shall reserve for each fiscal year 10 percent, or $400,000 (whichever is greater), of the amount appropriated pursuant to subsection (a) to carry out-

(A) section 209 (relating to the provision of technical assistance and information to States); and

(B) section 210 (relating to the conduct of evaluations).

(2) SPECIAL RULE. -For each year that the amount appropriated pursuant to subsection (a) is $10,000,000 or greater, the Secretary may reserve 5 percent of such amount to carry out section 211.