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[Congressional Bills 103th Congress]
[From the U.S. Government Publishing Office]
[S. 2144 Introduced in Senate (IS)]

103d CONGRESS
  2d Session
                                S. 2144

  To amend the Individuals with Disabilities Education Act to provide 
  family support for families of children with disabilities, and for 
                            other purposes.

_______________________________________________________________________

                   IN THE SENATE OF THE UNITED STATES

                 May 23 (legislative day, May 16), 1994

  Mr. Harkin (for himself, Mr. Jeffords, Mr. Kennedy, Mr. Simon, Mr. 
  Dodd, Mr. Leahy, Mr. Metzenbaum, and Mr. Wellstone) introduced the 
 following bill; which was read twice and referred to the Committee on 
                       Labor and Human Resources

_______________________________________________________________________

                                 A BILL

 
  To amend the Individuals with Disabilities Education Act to provide 
  family support for families of children with disabilities, 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.

    (a) This Act may be cited as the ``Support for Families with 
Children With Disabilities Act of 1994''.

SEC. 2. FAMILY SUPPORT FOR FAMILIES OF CHILDREN WITH DISABILITIES.

    The Individuals with Disabilities Education Act (20 U.S.C. 1400 et 
seq.) is amended by adding at the end the following new part:

                        ``PART I--FAMILY SUPPORT

``SEC. 701. SHORT TITLE.

    ``This part may be cited as the `Families of Children With 
Disabilities Support Act of 1994.'

``SEC. 702. FINDINGS, PURPOSES, AND POLICY.

    ``(a) Findings.--The Congress makes the following findings:
            ``(1) It is in the best interest of our Nation to preserve, 
        strengthen, and maintain the family.
            ``(2) Families are the greatest natural resource available 
        to their children and are the major providers of support, care, 
        and training of their children.
            ``(3) Families of children with disabilities enrich the 
        lives of all citizens through the contributions of such 
        families to the economic, health, and social fabric of their 
        community, State and Nation.
            ``(4) A growing number of families are searching for ways 
        to empower themselves to raise their children with disabilities 
        at home and in their communities. Supporting such families to 
        enable them to care for their children with disabilities at 
        home is efficient and cost-effective.
            ``(5) Children, including children with disabilities, 
        benefit from enduring family relationships in a nurturing home 
        environment.
            ``(6) Many families experience exceptionally high financial 
        outlays and significant physical and emotional challenges in 
        meeting the special needs of their children with disabilities.
            ``(7) There are financial disincentives for families to 
        care for their children with disabilities at home.
            ``(8) Most families of children with disabilities do not 
        have access to family-centered and family-directed services to 
        support such families in their efforts to care for their 
        children with disabilities at home.
            ``(9) There is a need in each State for a comprehensive, 
        coordinated, interagency system of family support that is 
        family-centered and family-directed, is easily accessible, 
        avoids duplication, uses existing resources more efficiently, 
        and prevents gaps in services to families in all areas of the 
        State.
            ``(10) The goals of the Nation properly include the goal of 
        providing families of children with disabilities the family 
        support necessary to accomplish the following:
                    ``(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 to make informed choices 
                and decisions regarding the nature of services, 
                supports, and resources made available to such 
                families.
    ``(b) Purposes.--The purposes of this part are as follows:
            ``(1) To provide financial assistance to the States to 
        support systems change and advocacy activities designed to 
        assist each State to develop and implement, or expand and 
        enhance, a family-centered and family-directed, culturally 
        competent, community-centered, comprehensive, statewide system 
        of family support for families of children with disabilities 
        that is designed to--
                    ``(A) ensure the full participation, choice and 
                control of families of children with disabilities in 
                decisions related to the provision of family support 
                for their family;
                    ``(B) ensure the active involvement of families of 
                children with disabilities in the planning, 
                development, implementation, and evaluation of such a 
                statewide system;
                    ``(C) increase the availability of, funding for, 
                access to, and provision of family support for families 
                of children with disabilities;
                    ``(D) promote training activities that are family-
                centered and family-directed and that enhance the 
                ability of family members of children with disabilities 
                to advocate for increased access to, funding for, and 
                provision of family support;
                    ``(E) increase and promote interagency coordination 
                among State agencies, and between State agencies and 
                private entities that are involved in carrying out 
                activities under section 708;
                    ``(F) increase the awareness of laws, regulations, 
                policies, practices, procedures, and organizational 
                structures, which facilitate the availability or 
                provision of family support; and
                    ``(G) facilitate the changing of laws, regulations, 
                policies, practices, procedures, and organizational 
                structures, which impede the availability or provision 
                of family support.
            ``(2) To identify Federal policies that facilitate or 
        impede family support and that are consistent with the 
        principles in subsection (c).
            ``(3) To enhance the ability of the Federal Government to--
                    ``(A) provide States with technical assistance and 
                information relating to the provision of family 
                support;
                    ``(B) conduct an evaluation of the program of 
                grants to States; and
                    ``(C) provide funding for model demonstration and 
                innovation projects.
    ``(c) Policy.--It is the policy of the United States that all 
programs, projects, and activities receiving assistance under this part 
shall be family-centered and family-directed and shall be carried out 
in a manner consistent with the following principles:
            ``(1) Family support must focus on the needs of the entire 
        family.
            ``(2) Families of children with disabilities should be 
        supported in determining their needs and in making decisions 
        concerning necessary, desirable, and appropriate services.
            ``(3) Families should play decisionmaking roles in policies 
        and programs that affect the lives of such families.
            ``(4) Family needs change over time and family support must 
        offer options that are flexible and responsive to the unique 
        needs and strengths and cultural values of individual families.
            ``(5) Family support is proactive and not solely in 
        response to a crisis.
            ``(6) Families must be supported in their efforts to 
        promote the integration and inclusion of their children with 
        disabilities into all aspects of community life.
            ``(7) Family support should promote the use of existing 
        social networks, strengthen natural sources of support, and 
        help build connections to existing community resources and 
        services.
            ``(8) Youth with disabilities should be involved in 
        decisionmaking about their own lives, consistent with the 
        unique strengths, resources, priorities, concerns, abilities 
        and capabilities of each such youth.
            ``(9) Services and supports must be provided in a manner 
        that demonstrates respect for individual dignity, personal 
        responsibility, self-determination, personal preferences, and 
        cultural differences of families.

``SEC. 703. DEFINITIONS.

    ``For the purposes of this part, only the following definitions 
shall apply:
            ``(1) Child with a disability.--The term `child with a 
        disability' means an individual who from birth through 21 years 
        of age meets the definition of disability under paragraph (4).
            ``(2) Council.--The term `Council' means a State Family 
        Support Policy Council established by a State under section 
        707.
            ``(3) Culturally competent.--The term `culturally 
        competent' means services, supports, or other assistance that 
        is conducted or provided in a manner that--
                    ``(A) is responsive to the beliefs, interpersonal 
                styles, attitudes, language, and behaviors of those 
                individuals receiving services; and
                    ``(B) has the greatest likelihood of ensuring 
                maximum participation of such individuals.
            ``(4) Disability.--The term `disability' means--
                    ``(A) in the case of an individual 6 years of age 
                or older, 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; and
                    ``(B) in the case of infants and young children, 
                birth to age 5, inclusive, a substantial developmental 
                delay or specific congenital or acquired conditions 
                with a high probability of resulting in a disability if 
                services are not provided.
            ``(5) Existing council.--The term `existing Council' means 
        a State Family Support Policy Council that is established by a 
        State prior to the date on which the State submits an 
        application for funding under this part.
            ``(6) Family.--The term `family' means a group of 
        interdependent persons residing in the same household that 
        consists of a child with a disability and one or more of the 
        following:
                    ``(A) A mother, father, brother, sister or any 
                combination.
                    ``(B) Extended blood relatives, such as a 
                grandparent, aunt, or uncle.
                    ``(C) An adoptive parent.
                    ``(D) One or more persons to whom legal custody of 
                a child with a disability has been given by a court.
                    ``(E) Short-term foster care that includes a family 
                reunification plan with the biological family.
        The term does not include employees in settings such as 
        hospitals, nursing homes, personal care homes, board and care 
        homes, group homes, or any other facilities.
            ``(7) Family-centered and family-directed.--The term 
        `family-centered and family-directed' means, with respect to a 
        service or program, that the service or program--
                    ``(A) facilitates the full participation, choice, 
                and control by families of children with disabilities 
                in--
                            ``(i) decisions relating to the supports 
                        that will meet the priorities of the family; 
                        and
                            ``(ii) the planning, development, 
                        implementation, and evaluation of the statewide 
                        system of family support for families of 
                        children with disabilities;
                    ``(B) responds to the needs of the entire family of 
                a child with a disability in a timely and appropriate 
                manner; and
                    ``(C) is easily accessible to and usable by 
                families of children with disabilities.
            ``(8) Family satisfaction.--The term `family satisfaction' 
        means the extent to which a service or support meets a need, 
        solves a problem, or adds value for a family, as determined by 
        the individual family.
            ``(9) Family support.--The term `family support'--
                    ``(A) means supports, resources, services, and 
                other assistance provided to families of children with 
                disabilities that are designed to--
                            ``(i) support families in the efforts of 
                        such families to raise their children with 
                        disabilities in the family home;
                            ``(ii) strengthen the role of the family as 
                        primary caregiver;
                            ``(iii) prevent inappropriate and unwanted 
                        out-of-the-home placement and maintain family 
                        unity; and
                            ``(iv) reunite families with children with 
                        disabilities who have been placed out of the 
                        home, whenever possible; and
                    ``(B) includes--
                            ``(i) service coordination that includes 
                        individualized planning and brokering for 
                        services with families in control of 
                        decisionmaking;
                            ``(ii) goods and services, which may 
                        include specialized diagnosis and evaluation, 
                        adaptive equipment, respite care (in and out of 
                        the home), personal assistance services, 
                        homemaker or chore services, behavioral 
                        supports, assistive technology services and 
                        devices, permanency or future planning, home 
                        and vehicle modifications and repairs, 
                        equipment and consumable supplies, 
                        transportation, specialized nutrition and 
                        clothing, counseling services and mental health 
                        services for family members, family education 
                        or training services, communication services, 
                        crisis intervention, day care and child care 
                        for a child with a disability, supports and 
                        services for integrated and inclusive community 
                        activities, parent or family member support 
                        groups, peer support, sitter service or 
                        companion service, and education aids; and
                            ``(iii) financial assistance, which may 
                        include discretionary cash subsidies, 
                        allowances, voucher or reimbursement systems, 
                        low-interest loans, or lines of credit.
            ``(10) Integration and inclusion.--The term `integration 
        and inclusion' with respect to children with disabilities and 
        their families means--
                    ``(A) the use of the same community resources that 
                are used by and available to other individuals and 
                families;
                    ``(B) the full and active participation in the same 
                community activities and utilization of the same 
                community resources as individuals without 
                disabilities, living, learning, working, and enjoying 
                life in regular contact with individuals without 
                disabilities; and
                    ``(C) having friendships and relationships with 
                individuals and families of their own choosing.
            ``(11) Lead entity.--The term `lead entity' means an office 
        or entity described in section 706.
            ``(12) Secretary.--The term `Secretary' means the Secretary 
        of Health and Human Services.
            ``(13) Service coordination.--The term `service 
        coordination'--
                    ``(A) means those family-centered and family-
                directed activities that assist and enable families to 
                receive rights and procedural safeguards and to gain 
                access to social, medical, legal, educational and other 
                supports and services; and
                    ``(B) includes--
                            ``(i) follow-along services that assure, 
                        through a continuing relationship between a 
                        family of a child with a disability and an 
                        individual or entity, that the changing needs 
                        of the child and family are recognized and 
                        appropriately met;
                            ``(ii) the coordination and monitoring of 
                        services provided to children with disabilities 
                        and their families;
                            ``(iii) the provision of information to 
                        children with disabilities and their families 
                        about the availability of services and 
                        assistance to such children and their families 
                        in obtaining appropriate services; and
                            ``(iv) the facilitation and organization of 
                        existing social networks, and natural sources 
                        of support, and community resources and 
                        services.
            ``(14) Statewide system of family support.--The term 
        `statewide system of family support' means a family-centered 
        and family-directed, culturally competent, community-centered, 
        comprehensive, statewide system of family support developed and 
        implemented by a State under this part that--
                    ``(A) addresses the needs of all families of 
                children with disabilities, including unserved and 
                underserved populations; and
                    ``(B) addresses such needs without regard to the 
                age, type of disability, race, ethnicity, or gender of 
                such children or the particular major life activity for 
                which such children need the assistance.
            ``(15) Systems change and advocacy activities.--The term 
        `systems change and advocacy 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) otherwise accomplish the purposes of this 
                part.
            ``(16) Unserved and underserved populations.--The term 
        `unserved and underserved populations' includes populations 
        such as individuals from racial and ethnic minority 
        backgrounds, disadvantaged individuals, individuals with 
        limited-English proficiency, individuals from underserved 
        geographic areas (rural or urban), and specific groups of 
        individuals within the population of individuals with 
        disabilities, including individuals with disabilities 
        attributable to physical impairment, mental impairment, or a 
        combination of physical and mental impairments.

``SEC. 704. GRANTS TO STATES.

    ``(a) In General.--The Secretary shall make grants to States in 
accordance with the provisions of this part to support systems change 
and advocacy activities designed to assist States to develop and 
implement, or expand and enhance, a statewide system of family support 
that accomplishes the purposes described in section 702.
    ``(b) Number of Grants To Be Awarded.--From amounts appropriated 
under section 716(a), the Secretary shall award any number of grants on 
a competitive basis, to the extent appropriate applications are 
submitted.
    ``(c) Award Period.--Grants shall be awarded for a period of 3 
years.
    ``(d) Amount of Grants.--
            ``(1) Grants to states.--From amounts appropriated under 
        section 716(a), the Secretary shall pay to each State that has 
        an application approved under section 705, for each year of the 
        grant period, an amount that is not less than $200,000 and not 
        more than $500,000.
            ``(2) Grants to territories.--From amounts appropriated 
        under section 716(a) for any fiscal year, the Secretary shall 
        pay to each territory that has an application approved under 
        section 705 not more than $100,000.
            ``(3) Calculation of amounts.--The Secretary shall 
        calculate a grant amount described in paragraph (1) or (2) on 
        the basis of the following:
                    ``(A) The amounts available for making grants under 
                this section.
                    ``(B) The child population of the State or 
                territory concerned.
            ``(4) Definitions.--As used in this subsection:
                    ``(A) State.--The term `State' means each of the 50 
                States of the United States, the District of Columbia, 
                and the Commonwealth of Puerto Rico.
                    ``(B) Territory.--The term `territory' means the 
                United States Virgin Islands, Guam, American Samoa, the 
                Commonwealth of the Northern Mariana Islands, or the 
                Republic of Palau (until the Compact of Free 
                Association takes effect).
    ``(e) Priority for Previously Participating States.--Amounts 
appropriated for purposes of carrying out the provisions of this 
section in each of the 2 fiscal years succeeding the fiscal year in 
which amounts are first appropriated for such purposes shall first be 
made available to a State that--
            ``(1) received a grant under this section during the fiscal 
        year preceding the fiscal year concerned; and
            ``(2) is making significant progress in accordance with 
        section 710.
    ``(f) 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; and
            ``(2) distributes the grants among States that have 
        differing levels of development of statewide systems of family 
        support.

``SEC. 705. APPLICATION.

    ``A State that desires to receive a grant under this part shall 
submit an application to the Secretary that contains the following 
information and assurances:
            ``(1) Family-centered and family-directed approach.--An 
        assurance that the State will use funds made available under 
        this part to accomplish the purposes described in section 702 
        and the goals, objectives, and family-centered outcomes 
        described in section 709(b) by carrying out systems change and 
        advocacy activities in partnership with families and in a 
        manner that is family-centered and family-directed.
            ``(2) Designation of the lead entity.--Information 
        identifying the lead entity, and evidence documenting the 
        abilities of such entity.
            ``(3) State family support policy council.--An assurance of 
        the following:
                    ``(A) The State has established a Council that 
                meets the criteria set forth in section 707.
                    ``(B) The lead entity will seek and consider on a 
                regular and ongoing basis advice from the Council 
                regarding the development and implementation of the 
                strategic plan under section 709, and other policies 
                and procedures of general applicability pertaining to 
                the provision of family support in the State.
                    ``(C) The lead entity will include, in its annual 
                progress reports, a summary of advice provided by the 
                Council, including recommendations from the annual 
                report of the Council and the response of the lead 
                entity to such advice and recommendations.
                    ``(D) The lead entity will transmit to the Council 
                any other plans, reports, and other information 
                required under this part.
            ``(4) Family involvement.--A description of the following:
                    ``(A) The nature and extent of the involvement of 
                families of children with disabilities and individuals 
                with disabilities in the development of the 
                application.
                    ``(B) Strategies for actively involving families of 
                children with disabilities and individuals with 
                disabilities in the development, implementation, and 
                evaluation of the statewide system of family support.
                    ``(C) Strategies for actively involving families of 
                children with disabilities who use family support 
                services in decisions relating to such services.
            ``(5) Agency involvement.--A description of the nature and 
        extent of involvement of various State agencies or units within 
        State agencies in the preparation of the application and the 
        continuing role of each agency in the development and 
        implementation, or expansion and enhancement, of the statewide 
        system of family support, including the identification of the 
        available resources of each agency for family support.
            ``(6) State resources.--A description of the State 
        resources and other resources that are available to commit to 
        the development and implementation, or expansion and 
        enhancement, of a statewide system of family support.
            ``(7) Unmet needs.--A description of unmet needs for family 
        support within the State, including a summary of existing 
        information regarding the number, types, and geographic 
        distribution of unserved and underserved families, and of 
        previous and ongoing efforts to develop and implement, or 
        expand and enhance, a statewide system of family support.
            ``(8) Preliminary plan.--A preliminary plan that contains 
        information on the program to be carried out under the grant 
        with respect to the goals and objectives of the State for the 
        program and the activities that the State plans to carry out 
        under the program (including the process for appointing 
        individuals to the Council) and that is consistent with the 
        purposes of this part. Such preliminary plan shall be reviewed 
        and revised as part of the strategic planning requirement. Such 
        plan shall identify strategies to ensure the full participation 
        of families from unserved and underserved groups.
            ``(9) Activities.--An assurance that, except for the first 
        year of the grant, the State shall expend not less than 65 
        percent of the funds made available to a State under this part 
        for grants and contracts to conduct the activities described in 
        section 708.
            ``(10) Limit on administrative costs.--An assurance that 
        the lead entity that receives funding under this part in any 
        fiscal year shall use not more than 8 percent of such funds in 
        such year for administrative expenses. Such administrative 
        expenses shall not include expenses related to the activities 
        of the Council.
            ``(11) Strategic plan.--A description of the steps that 
        will be taken by the State to develop a strategic plan in 
        accordance with section 709.
            ``(12) Evaluation.--An assurance that the State will 
        conduct an annual evaluation of the statewide system of family 
        support in accordance with section 710.
            ``(13) Data collection.--A description of the data 
        collection system to be used for compiling information as 
        required by the Secretary and the procedures that will be used 
        to conduct evaluations of the system.
            ``(14) Reports.--An assurance that the State will carry out 
        the following activities:
                    ``(A) Preparation and submission of reports, 
                including annual progress reports as described in 
                section 710, to the Secretary in such form and 
                containing such information as the Secretary may 
                require.
                    ``(B) Maintenance of such records and allowance of 
                access to such records as the Secretary may require to 
                ensure the correctness and verification of information 
                provided to the Secretary under this paragraph.
            ``(15) Coordination with state and local councils.--An 
        assurance that the lead entity will coordinate the activities 
        funded through a grant made under this part with the activities 
        carried out by other councils within the State, including the 
        following councils:
                    ``(A) The State Developmental Disabilities Planning 
                Council, established under the Developmental 
                Disabilities Assistance and Bill of Rights Act.
                    ``(B) The State Interagency Coordinating Council, 
                established under the Individuals with Disabilities 
                Education Act.
                    ``(C) Local or regional family support councils 
                within the State, to the extent that such councils 
                exist.
            ``(16) Availability of information.--An assurance that the 
        State will make available information to family members of 
        children with disabilities, and to agencies and organizations 
        that are in contact with such families, concerning family 
        support policies and programs. Such information shall be 
        available in a form that will allow such family members to 
        effectively use such information. In preparation of such 
        information, the State shall consider the needs of family 
        members with disabilities, and families of diverse racial and 
        ethnic backgrounds.
            ``(17) Participation.--An assurance that the State will 
        take affirmative measures to assure that participation in 
        programs under this part is geographically representative of 
        the State, and reflects the diversity of the State with respect 
        to race, ethnicity, and socioeconomic status.
            ``(18) State policies with respect to contracts and 
        agreements.--A description of the policies governing contracts, 
        grants, and other arrangements with public agencies, private-
        nonprofit organizations, and other entities or individuals for 
        the purposes of providing family support consistent with the 
        provisions of this part.
            ``(19) Supplement other funds.--An assurance, with respect 
        to amounts received under a grant, of the following:
                    ``(A) Such grant will be used to supplement and not 
                supplant amounts available from other sources that are 
                expended for family support programs, including the 
                provision of family support.
                    ``(B) Such grant will not be used to pay a 
                financial obligation for family support that would have 
                been paid with amounts available from other sources if 
                amounts under such grant had not been available unless 
                the following circumstances occur:
                            ``(i) Such payment is made only to prevent 
                        a delay in the receipt of family support by a 
                        family of a child with a disability.
                            ``(ii) The entity or agency responsible 
                        subsequently reimburses the appropriate account 
                        with respect to programs and activities under 
                        the grant in an amount equal to the amount of 
                        such payment.
            ``(20) Authority to use funds.--An assurance that the lead 
        entity will have the authority to use funds made available 
        under this part to comply with the requirements of this part, 
        including the ability to hire qualified staff necessary to 
        carry out activities under the program.
            ``(21) Commingling of funds.--An assurance that amounts 
        received under the grant will not be commingled with State or 
        other funds.
            ``(22) Fiscal control and accounting procedures.--An 
        assurance that the State will adopt such fiscal control and 
        accounting procedures as may be necessary to ensure proper 
        disbursement of and accounting for amounts received under the 
        grant.
            ``(23) Compliance with part.--An assurance that amounts 
        received under the grant will be expended in accordance with 
        the provisions of this part.
            ``(24) Other information and assurances.--Such other 
        information and assurances as the Secretary may reasonably 
        require.

``SEC. 706. DESIGNATION OF THE LEAD ENTITY.

    ``(a) Designation.--The Chief Executive Officer of a State that 
desires to receive a grant under section 704, shall designate the 
office or entity (referred to in this part as the ``lead entity '') 
responsible for--
            ``(1) submitting the application under section 705 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 statewide system of family support services among public 
        agencies and between public agencies and private agencies, 
        including coordinating efforts related to entering into 
        interagency agreements; and
            ``(5) coordinating efforts related to the meaningful 
        participation by families with respect to activities carried 
        out under a grant awarded under this part.
    ``(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.
    ``(c) Capabilities of the Lead Entity.--The State shall provide, in 
accordance with the requirements of section 705, evidence that the lead 
entity has the capacity--
            ``(1) to promote a statewide system of family support 
        throughout the State;
            ``(2) to promote and implement systems change and advocacy 
        activities;
            ``(3) to maximize access to public and private funds for 
        family support services;
            ``(4) to exercise leadership in implementing effective 
        strategies for capacity building, family and professional 
        training, and access to and funding for family support services 
        across agencies;
            ``(5) to promote and facilitate the implementation of 
        family support services that are family-centered and family-
        directed, and flexible, and that provide families with the 
        greatest possible decisionmaking authority and control 
        regarding the nature and use of services and supports;
            ``(6) to promote leadership by families in planning, policy 
        development, implementation, and evaluation of family support 
        services, and parent-professional partnerships; and
            ``(7) to promote and develop interagency coordination and 
        collaboration.

``SEC. 707. STATE FAMILY SUPPORT POLICY COUNCIL.

    ``(a) Establishment.--A State that desires to receive financial 
assistance under this part shall, prior to the receipt of funds under 
this part, establish a State Family Support Policy Council.
    ``(b) Appointments.--
            ``(1) Members.--Members of the Council shall be appointed 
        by the Chief Executive Officer of the State or the appropriate 
        official within the State responsible for making appointments 
        in accordance with subsection (c). The appointing authority 
        shall select members after soliciting recommendations from the 
        State Developmental Disabilities Council, parent or family 
        advocacy organizations, and other organizations representing 
        the full range of disabilities covered under this part. The 
        appointing authority shall ensure that the membership of the 
        Council reasonably represents the population of the State and 
        shall establish guidelines for terms of Council members.
            ``(2) Chairperson.--The Council shall elect a member of the 
        Council to serve as the Chairperson of the Council. The 
        Chairperson shall be a family member, as described in 
        subsection (c)(1), and may not be an employee of a State 
        agency. The term of the Chairperson shall not exceed two 2-year 
        terms or one 4-year term.
    ``(c) Composition.--The Council shall be composed of--
            ``(1) a majority of members who are--
                    ``(A) individuals who are family members of 
                children with disabilities and who are--
                            ``(i) from families that have within such 
                        families a range of ages of children with 
                        disabilities and a range of types and severity 
                        of disabilities among family members;
                            ``(ii) representative of the racial and 
                        ethnic population of the State and of the 
                        geographic areas of the State;
                            ``(iii) members of local family support 
                        councils, where such councils exist; and
                            ``(iv) eligible for family support; and
                    ``(B) children with disabilities, from age 18 to 
                21, and are representative of the racial and ethnic 
                population of the State and of the geographic areas of 
                the State;
            ``(2) at least one member from each of the State agencies 
        with significant responsibility for the provision of, or 
        payment for, family support services to families of children 
        with disabilities, who has sufficient authority to engage in 
        policy planning and implementation on behalf of such agencies, 
        and from the office of the Chief Executive Officer of the State 
        with responsibility with respect to budget and finance;
            ``(3) a representative of the State legislature;
            ``(4) at least one member who is a public or private 
        provider of family support services; and
            ``(5) at least one member who is involved with the 
        education and training of personnel employed to work with 
        children with disabilities and their families.
    ``(d) Meetings.--The Council shall meet at least quarterly and in 
such places as it deems necessary. The meetings shall be publicly 
announced, and, to the extent appropriate, open and accessible to the 
general public.
    ``(e) Functions.--The Council shall--
            ``(1) establish policies regarding the operation of the 
        Council;
            ``(2) advise and assist the lead entity in the performance 
        of responsibilities described in section 706(a), particularly 
        the promotion of interagency agreements and the promotion of 
        meaningful participation by families in all aspects of the 
        statewide system of family support;
            ``(3) advise and assist State agencies in the development 
        of policies and procedures relating to the provision of family 
        support in the State;
            ``(4) advise and assist the lead entity in the development 
        of all aspects of a strategic plan under section 709, 
        including--
                    ``(A) the mission, philosophy, values and 
                principles of the statewide system of family support;
                    ``(B) the statement of family-centered outcomes;
                    ``(C) the goals, objectives, and activities;
                    ``(D) the quality improvement or quality 
                enhancement system;
                    ``(E) the appeals process;
                    ``(F) the eligibility criteria to be used for all 
                programs, projects, and activities carried out under 
                this part;
                    ``(G) the analysis of the extent to which family 
                support is defined as a benefit and not as income; and
                    ``(H) the approach to the evaluation of the 
                statewide system of family support;
            ``(5) advise and assist the lead entity in the 
        implementation of systems change and advocacy activities;
            ``(6) advise and assist the lead entity in assessing family 
        satisfaction with the statewide system of family support;
            ``(7) review, analyze, and comment on the strategic plan 
        and updates to the plan, progress reports, and annual budgets;
            ``(8) advise and assist the lead entity in the 
        identification of Federal and State barriers that impede the 
        development of a statewide system of family support; and
            ``(9) prepare and submit to the Chief Executive Officer of 
        the State, the State legislature, and to the Secretary an 
        annual report on the status of family support services for 
        families of children with disabilities, and make such report 
        available to the public.
    ``(f) Hearings and Forums.--The Council is authorized to hold such 
hearings and forums as the Council may determine to be necessary to 
carry out the duties of the Council.
    ``(g) Conflict of Interest.--No member of the Council shall cast a 
vote on any matter that would provide direct financial benefit to such 
member or otherwise give the appearance of a conflict of interest under 
applicable State law.
    ``(h) Compensation and Expenses.--The Council may, consistent with 
State law, use such resources to reimburse members of the Council for 
reasonable and necessary expenses of attending Council meetings and 
performing Council duties (including child care and personal assistance 
services), and to pay compensation to a member of the Council, if such 
member is not employed or must forfeit wages from other employment, for 
each day the member is engaged in performing Council duties.
    ``(i) Use of Existing Council.--
            ``(1) In general.--To the extent that a State has an 
        existing Council, the existing Council shall be considered in 
        compliance with this section if the existing Council meets the 
        requirements under paragraph (2).
            ``(2) Requirements.--An existing Council shall--
                    ``(A) carry out functions that are comparable to 
                the functions described in subsection (e);
                    ``(B) include a majority of members who are family 
                members of children with disabilities and who are 
                children with disabilities (from age 18 to 21); and
                    ``(C) in the case in which the existing Council 
                does not represent the full range of families and 
                individuals described in subsection (c)(1), adopt 
                strategies that will ensure the full participation of 
                such families and individuals in all activities carried 
                out by the Council.
            ``(3) Timeline for compliance.--
                    ``(A) Statutory.--In those States in which the 
                existing Council is established by State statute and 
                such statute must be amended to bring the existing 
                Council into compliance with subsections (a) through 
                (h), the State statute must be amended, not later than 
                24 months after the date on which the State accepts 
                funds under this part, to ensure that the existing 
                Council is in compliance.
                    ``(B) Nonstatutory.--In those States in which an 
                amendment to State statute is not necessary in order to 
                bring the existing Council in compliance with 
                subsections (a) through (h), the State shall ensure 
                that the existing Council is in compliance with this 
                section not later than 6 months after the date on which 
                the State accepts funds under this part.
            ``(4) Documentation of compliance.--Any State that has an 
        existing Council shall include in a grant application submitted 
        under section 705 and in subsequent annual progress reports 
        submitted to the Secretary under section 710, a description of 
        the measures that are being taken or that are planned, to 
        ensure that the existing Council of the State complies with 
        this section.

``SEC. 708. AUTHORIZED ACTIVITIES.

    ``A State that receives a grant under section 704 may use the funds 
made available through the grant to carry out such systems change and 
advocacy activities that accomplish the purposes described in section 
702, including the following activities:
            ``(1) Training and technical assistance.--The State may 
        support training and technical assistance activities for family 
        members, service providers, community members, professionals, 
        members of the Council, students and others that will do the 
        following:
                    ``(A) Enhance the ability of family members of 
                children with disabilities to advocate for increased 
                access to, funding for, and provision of family 
                support.
                    ``(B) Increase family participation, choice, and 
                control in the provision of family support.
                    ``(C) Promote partnerships with families at all 
                levels of the service system.
                    ``(D) Develop or strengthen family-centered and 
                family-directed approaches to services, including 
                service coordination services, service planning 
                services, and respite care services.
                    ``(E) Assist families in accessing natural and 
                community supports and in obtaining benefits and 
                services.
            ``(2) Interagency coordination.--The State may support 
        activities that conduct the following:
                    ``(A) Identification and coordination of Federal 
                and State policies, resources, and services, relating 
                to the provision of family support services for 
                families with children with disabilities, including 
                entering into interagency agreements.
                    ``(B) Interagency work groups to enhance public 
                funding options and coordinate access to funding for 
                family support services for families with children with 
                disabilities, with special attention to the issues of 
                family involvement in the identification, planning, 
                use, delivery, and evaluation of such services.
                    ``(C) Documentation and dissemination of 
                information about interagency activities that promote 
                coordination with respect to family support services, 
                including evidence of increased participation of State 
                and local health, maternal and child health, social 
                service, mental health, mental retardation and 
                developmental disabilities, child protection, 
                education, early intervention, developmental 
                disabilities councils, agencies and departments.
            ``(3) Local or regional councils.--The State may support 
        the development or enhancement of local or regional councils to 
        review the status of family support in the local or regional 
        area, to advise and assist with the planning, development, 
        implementation, and evaluation of family support in such local 
        or regional area, and to provide recommendations to the State 
        regarding improvements and plans.
            ``(4) Outreach.--The State may conduct outreach activities 
        to locate families who are eligible for family support and to 
        identify groups who are unserved or underserved. Such 
        activities may involve the creation or maintenance of, support 
        of, or provision of, assistance to statewide and community 
        parent advocacy organizations, and organizations that provide 
        family support to families of children with disabilities.
            ``(5) Advocacy services.--The State may support advocacy 
        services to enable families of children with disabilities to 
        access family support. Such services may include representation 
        of children with disabilities and their families, and training 
        activities that are family-centered and family-directed and 
        that enhance the ability of families of children with 
        disabilities to advocate for increased access to, funding for, 
        and provision of family support.
            ``(6) Policy studies.--The State may support policy studies 
        that relate to the development and implementation, or expansion 
        and enhancement, of a statewide system of family support. Such 
        studies may address issues regarding eligibility and access to 
        services.
            ``(7) Hearings and forums.--The State may conduct hearings 
        and forums to solicit input from families regarding family 
        support programs, policies, and plans. Such hearings and forums 
        may be conducted in collaboration with other statewide 
        councils.
            ``(8) Public awareness and education.--The State may 
        develop and disseminate information relating to family support 
        designed to provide information to families of children with 
        disabilities, parent advocacy groups and organizations, public 
        and private agencies that are in contact with children with 
        disabilities and families of such children, students, 
        policymakers, and the public. Such information may relate to 
        the nature, cost, and availability of, and accessibility to, 
        family support, the impact of family support on other benefits, 
        and the efficacy of family support with respect to enhancing 
        the quality of family life.
            ``(9) Needs assessment.--The State may conduct a needs 
        assessment, which may, in part, be based on existing State 
        data.
            ``(10) Program data.--The State may support the compilation 
        and evaluation of appropriate data related to the statewide 
        system of family support.
            ``(11) Pilot demonstration projects.--The State may support 
        pilot demonstration projects to demonstrate new approaches to 
        the provision of family support. Such projects may include the 
        demonstration of family-centered and family-directed service 
        coordination, approaches to improve access to services, 
        including independent service coordination, peer support 
        networks, and voucher programs.
            ``(12) Other activities.--The State may support other 
        systems change and advocacy activities that accomplish the 
        purposes described in section 702.

``SEC. 709. STRATEGIC PLAN.

    ``(a) In General.--Not later than 1 year after the date on which 
assistance is received by a State under this part, the lead entity of 
the State, in conjunction with the Council, shall prepare and submit to 
the Secretary a strategic plan designed to achieve the purposes and 
policy of this part.
    ``(b) Contents.--The strategic plan shall include--
            ``(1) a statement of the mission, philosophy, values, and 
        principles of the statewide system of family support in the 
        State;
            ``(2) a statement of family-centered outcomes to be 
        achieved by the statewide system of family support;
            ``(3) specific goals and objectives for developing and 
        implementing, or expanding and improving, the system for 
        providing family support services, and for achieving the 
        family-centered outcomes;
            ``(4) systemic approaches for accomplishing the objectives 
        and achieving the family-centered outcomes, including 
        interagency coordination and cooperation, that builds upon 
        state-of-the-art practices and research findings;
            ``(5) a description of the specific programs, projects, and 
        activities funded under this part and the manner in which the 
        programs, projects, and activities accomplish the objectives 
        and achieve the family-centered outcomes;
            ``(6) a description of an ongoing quality improvement or 
        quality enhancement system, which utilizes information from 
        ongoing measurements of the extent to which family-centered 
        outcomes are achieved, to improve the system;
            ``(7) a description of an appeals process that will be used 
        in resolving any disputes families may have regarding the 
        determination of eligibility or the provision of family support 
        services to the family or to the child with a disability;
            ``(8) a description of the eligibility criteria to be used 
        to carry out programs, projects, and activities under this part 
        that includes all eligible families;
            ``(9) an analysis of the extent to which family support for 
        an individual family is defined as a benefit and not as income; 
        and
            ``(10) a description of the plan to conduct an annual 
        evaluation of the statewide system of family support, in 
        conjunction with the Council, to improve such statewide system 
        and to document progress as required by section 710.
    ``(c) Period and Updates.--The strategic plan shall cover the 
period of the grant and shall be reviewed and updated on an annual 
basis to reflect actual experience and family satisfaction information 
over the preceding year and input from the Council, families of 
children with disabilities, and other interested parties.
    ``(d) Recommendations.--Prior to developing the strategic plan, the 
State shall solicit input and recommendations from interested members 
of the public, either by holding public hearings or through an 
alternative method or methods determined by the lead entity in 
consultation with the Council. The lead entity shall also obtain the 
comments and recommendations of the Council. The lead entity, in 
conjunction with the Council, shall consider the recommendations and 
attempt to reach a consensus with respect to such recommendations. If 
the lead entity and the Council are unable to reach a consensus, the 
lead entity shall include a written explanation of the reason a 
consensus was not reached in the strategic plan.
    ``(e) Comment.--The State shall develop a procedure for ensuring 
ongoing comment from the Council.
    ``(f) Dissemination.--The State shall widely disseminate the 
strategic plan to families of children with disabilities, parent 
advocacy organizations, and other interested persons.
    ``(g) Construction.--Nothing in this section shall be construed to 
prevent a State from using an existing statewide strategic plan or 
parts thereof to meet the requirements of this section as long as such 
plan or the applicable parts thereof meet the specifications of this 
section.

``SEC. 710. PROGRESS CRITERIA AND REPORTS.

    ``(a) Guidelines.--The Secretary shall develop guidelines to be 
used in assessing the extent to which a State that received a grant 
under section 704 is making significant progress in developing and 
implementing, or expanding and enhancing, a statewide system of family 
support consistent with the purposes of this part.
    ``(b) Progress Reports.--A State that receives a grant under 
section 704 shall submit annually to the Secretary a report that 
documents progress in developing and implementing, or expanding and 
enhancing, a statewide system of family support consistent with this 
part. Such report shall include--
            ``(1) the results of the annual evaluation of the statewide 
        system of family support, including--
                    ``(A) the extent to which the purposes of this 
                part, and the goals and objectives described in section 
                709(b)(3) have been achieved, including--
                            ``(i) the extent to which the family-
                        outcomes described in section 709(b)(3) have 
                        been achieved;
                            ``(ii) the degree of family satisfaction 
                        with the program;
                            ``(iii) increases in the availability of, 
                        funding for, access to, and provision of family 
                        support;
                            ``(iv) an analysis of the laws, 
                        regulations, policies, practices, procedures, 
                        and organizational structures that the State 
                        has changed, or has attempted to change, to 
                        facilitate and increase access to, provision 
                        of, and funding for family support;
                            ``(v) a description of any written policies 
                        and procedures that the State has developed and 
                        implemented regarding access to, provision of, 
                        and funding for family support;
                            ``(vi) the degree of involvement of various 
                        State agencies in the development, 
                        implementation and evaluation of the system, 
                        including interagency agreements that the State 
                        has developed and implemented regarding access 
                        to, provision of, and funding for family 
                        support;
                            ``(vii) the activities undertaken to 
                        collect and disseminate information, including 
                        outreach activities to unserved and underserved 
                        populations; and
                            ``(viii) the involvement of families of 
                        children with disabilities who represent a 
                        variety of ages and types of disabilities, in 
                        the development of the Federal grant 
                        application to the Secretary, and in the 
                        planning, development and implementation, and 
                        evaluation of the statewide system of family 
                        support, including activities undertaken to 
                        improve such involvement, such as family 
                        training and outreach activities to unserved 
                        and underserved populations; and
                    ``(B) the areas of need that require attention;
            ``(2) a description of the unanticipated problems with the 
        achievement of the goals, objectives, and family-centered 
        outcomes described in the application or strategic plan and the 
        activities the State has taken to rectify these problems;
            ``(3) for the annual progress report concerning the first 
        year of the grant period, the strategic plan developed by the 
        State during the first year; and
            ``(4) for the annual progress report concerning subsequent 
        years of the grant period, the updated strategic plan.

``SEC. 711. ADMINISTRATIVE PROVISIONS.

    ``(a) Evaluation of Grant Applications.--
            ``(1) Panels.--The Secretary shall convene panels of 
        experts who are competent, by virtue of their training or 
        experience, to evaluate grant applications under this part.
            ``(2) Composition of panels.--Panels shall be composed of a 
        majority of family members of children with disabilities and 
        individuals with disabilities, and may include service 
        providers, State administrative personnel, and professionals. 
        Panels shall include a majority of individuals who are not 
        Federal employees.
            ``(3) Expenses and fees of the panel.--A member of the 
        Panel who is not a Federal employee shall receive travel, per 
        diem and consultant fees not to exceed the rate provided to 
        other consultants used by the Secretary. The Secretary may use 
        funds available under section 716 to pay expenses and fees of a 
        member of a Panel who is not a Federal employee.
    ``(b) Provision of Information.--To assist the Secretary in 
carrying out the responsibilities of the Secretary under this section, 
the Secretary may require States to provide relevant information, 
including recommendations and relevant reports of the Council.
    ``(c) Appeals.--The Secretary shall establish appeals procedures 
for States that are found in noncompliance with the provisions of this 
part as the result of failure to supply information required under 
section 705 or 710. The Secretary shall take into consideration the 
comments of the Council.
    ``(d) Effect on Other Assistance.--This part may not be construed 
as authorizing a Federal or State agency to reduce medical or other 
assistance available, or to alter eligibility, under any Federal law.
    ``(e) Unobligated Funds.--Any amount paid to a State for a fiscal 
year and remaining unobligated at the end of such year shall remain 
available to such State for the next fiscal year for the purposes for 
which such amount was paid.

``SEC. 712. TECHNICAL ASSISTANCE.

    ``(a) In General.--The Secretary shall make grants, or 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.
    ``(b) Purpose.--With respect to States receiving assistance under 
this part, the technical assistance and information described under 
subsection (a) shall be provided to the State agency designated as the 
lead entity, the Council, family members of, and advocates for, 
children with disabilities, service providers, and policymakers 
involved with children with disabilities and their families. Such 
technical assistance shall also be available to States that do not 
receive assistance under this part. Such technical assistance and 
information shall--
            ``(1) facilitate effective systems change and advocacy 
        activities;
            ``(2) promote effective approaches to the development and 
        implementation, or expansion and enhancement of, the statewide 
        systems of family support that increase access to, funding for, 
        and awareness of family support;
            ``(3) promote partnerships with families at all levels of 
        the service system;
            ``(4) foster awareness and understanding of Federal, State, 
        and local laws, regulations, policies, practices, procedures, 
        and organizational structures, that facilitate, and overcome 
        barriers to, funding for, and access to family support;
            ``(5) foster the development and replication of effective 
        approaches to strategic plan development, interagency 
        coordination, training, outreach to underserved groups, and 
        public awareness activities;
            ``(6) facilitate service delivery capacity, training, and 
        the improvement of data collection and evaluation systems;
            ``(7) promote effective approaches to the development of 
        family-centered and family-directed services, including 
        approaches to the development and measurement of family-
        centered outcomes described in section 709(b)(2), and the 
        assessment of family satisfaction described in section 
        710(b)(1)(A)(ii); and
            ``(8) coordinate and facilitate an annual meeting of the 
        chairpersons of the Councils.
    ``(c) Request for Technical Assistance.--A request for technical 
assistance by a lead entity in a State receiving assistance under this 
part shall be made in conjunction with the Council.
    ``(d) Reports to the Secretary.--An entity providing the technical 
assistance under this section shall submit periodic reports to the 
Secretary regarding Federal policies and procedures identified within 
the States that impede the delivery of family support.

``SEC. 713. EVALUATION.

    ``(a) In General.--The Secretary shall make grants, or 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 
conducting a national evaluation of the program of grants to States 
authorized by this part.
    ``(b) Purpose.--The purpose of an evaluation under subsection (a) 
shall be to assess the status and effects of State efforts to develop 
and implement, or expand and enhance, statewide systems of family 
support in a manner consistent with the provisions of this part, 
particularly in terms of the impact of such efforts on families of 
children with disabilities, and to recommend amendments to this part 
that are necessary to assist States to fully accomplish the purposes of 
this part. The Secretary or recipient of assistance under this section 
shall work with the States to consider and develop an information 
system designed to report and compile, from information provided by the 
States, including the Council, a qualitative and quantitative 
description of the impact of the program of grants to States authorized 
by this part on--
            ``(1) families of children with disabilities, including 
        families from ethnic and racial minority backgrounds;
            ``(2) access to and funding for family support; and
            ``(3) the involvement of families at all levels of the 
        service system.
    ``(c) Report to Congress.--Not later than 2\1/2\ years after the 
date of enactment of this part, the Secretary shall prepare and submit 
to the appropriate committees of Congress a report concerning the 
results of the evaluation conducted under this section.
    ``(d) Conflict of Interest.--The Secretary shall assure that a 
recipient of a grant, contract, or cooperative agreement under this 
section is independent from, and free from, any financial or personal 
relationships with the recipient of a grant, contract, or cooperative 
agreement selected to provide technical assistance under section 712.

``SEC. 714. PROJECTS OF NATIONAL SIGNIFICANCE.

    ``(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, 
consistent with the policies described in section 702.
    ``(b) Demonstration and Innovation Projects.--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 for families of children with disabilities.

``SEC. 715. CONSTRUCTION.

    ``Notwithstanding any other provision of this title, nothing in 
parts A through H of this title shall be construed to apply to this 
part.

``SEC. 716. AUTHORIZATION OF APPROPRIATIONS.

    ``(a) In General.--There are authorized to be appropriated to carry 
out this part, $10,000,000 for fiscal year 1995, and such sums as may 
be necessary for each of the fiscal years 1996 and 1997.
    ``(b) Reservation.--
            ``(1) In general.--Except as provided in paragraph (2), the 
        Secretary shall reserve for each fiscal year 10 percent, or 
        $600,000 (whichever is greater), of the amount appropriated 
        pursuant to the authority of subsection (a) to carry out--
                    ``(A) section 712, with respect to the provision of 
                technical assistance and information to States;
                    ``(B) section 713, with respect to the conduct of 
                the evaluations;
                    ``(C) section 711(a), with respect to the 
                evaluation of grant applications; and
                    ``(D) section 714, with respect to the conduct of 
                projects of national significance.
            ``(2) Special rule.--The Secretary shall only use funds 
        reserved under paragraph (1) for a fiscal year to carry out 
        section 714 for such year if the amount of funds reserved under 
        such paragraph for such fiscal year is $700,000 or greater.

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