GENERAL ASSEMBLY OF NORTH CAROLINA

SESSION 1995

S	1 

SENATE BILL 936

Short Title:  Families With Dis. Support Act.	(Public)

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Sponsors: Senator Plexico.

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Referred to:  Children and Human Resources

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May 2, 1995

A BILL TO BE ENTITLED
AN ACT TO ESTABLISH THE FAMILIES OF PERSONS WITH DISABILITIES SUPPORT ACT.
The General Assembly of North Carolina enacts:
Section 1.  Section 1, Article 3 of Chapter 143B of the General Statutes, is amended by adding a new Part to read:
"Part 5C.  Families of Persons With Disabilities Support Act.
"§ 143B-152.20.  Purpose.
The purpose of this Part is to establish a Family Support Program for families of persons with disabilities to assist families and adults with disabilities in identifying and meeting their needs and to provide family- and people-centered alternatives to out-of-home placement and institutionalization of adults and children with disabilities.
"§ 143B-152.21.  Legislative findings.
The General Assembly makes the following findings of fact regarding families of persons with disabilities and the service delivery system:
(1)	It is in the best interest of the State to preserve, strengthen, and maintain the family.
(2)	Children and adults with disabilities need and deserve enduring family relationships with caring people in a nurturing home environment.
(3)	Children and adults with disabilities have unique positive contributions to make to their families and to their communities.
(4)	Many families experience exceptionally high financial outlays and significant physical and emotional challenges in meeting the special needs of members with disabilities throughout life.
(5)	A growing number of families are searching for ways to keep family members with disabilities in the family home or to assist adult members with disabilities in living in their own homes within local communities.
(6)	Existing programs too often place children and adults with disabilities in out-of-home settings, which can have a negative impact on their families.
(7)	When family and friends provide the primary care for a family member with a disability, supplemented by community services and supports, long-term care may be less costly than if the individual is placed outside the family home.
(8)	Existing State programs have not always been adequate to provide support services that help families keep members with disabilities at home or in their own homes in local communities, as is illustrated by the long waiting lists for services and programs, including out-of-home placements, that currently exist in many areas of the State.
(9)	A comprehensive, coordinated system of family support services avoids duplication of services, uses existing resources more efficiently, and prevents gaps in services to families and adults with disabilities in all areas of the State.
"§ 143B-152.22.  Family Support Program established; goals and principles.
(a)	The Family Support Program for families of children and for adults with disabilities in the State is established in the Department of Human Resources, Division of Mental Health, Developmental Disabilities, and Substance Abuse Services.
(b)	To carry out the intent of this Part, the Family Support Program shall have the following people- and family-centered goals and principles:
(1)	To keep families together, whenever possible, by providing the support necessary for families to care for their children at home and for their adult family members at home or in local communities;
(2)	To improve the opportunities for adults with disabilities to live in communities and promote self-determination;
(3)	To give families more choices and control over the care and support of their child with a disability and to assist families in supporting their adult member with a disability;
(4)	To encourage people-centered planning that allows adults with disabilities to increase the control they have or can have over their own lives;
(5)	To respect and support the choices of families regarding the type and extent of services they need;
(6)	To encourage the focus of services and supports to become people-centered by shifting from the family to the person with a disability as the person reaches adulthood, whether living with the person's family of origin or in a separate home;
(7)	To provide support services to families and adults with disabilities that are flexible and responsive over time;
(8)	To reduce the high financial costs and emotional challenges encountered by families who have members with disabilities;
(9)	To provide support services that are responsive to the needs of the entire family, so that families are better able to care for their children with disabilities at home and assist their adult members with disabilities at home or in local communities;
(10)	To provide support in a family- or people-centered, culturally competent manner that respects individual preferences and differences among families and among adults with disabilities;
(11)	To give families and adults with disabilities decision-making roles in the policies and programs that affect their lives;
(12)	To coordinate family support services with programs and services offered by other agencies and to encourage collaboration between agency staffs and families; and
(13)	To promote the use of social networks, natural sources of support in communities, and collaborative efforts for and among families and adults with disabilities.
(c)	Nothing in this Part shall be construed to prevent families from choosing out-of-home placement for their child or adult member with a disability, including institutional placement.
(d)	To carry out the intent of this Part, the Family Support Program shall have the following system-wide principles and goals:
(1)	To plan, develop, deliver, and evaluate family support services through an efficient, coordinated statewide system;
(2)	To provide services to families and adults with disabilities in settings that are consistent with the norms of society and that are delivered in a people- or family-centered, culturally competent manner;
(3)	To provide home and community services in the least restrictive, appropriate setting and with the least intrusive, appropriate methods for the family or adult with a disability;
(4)	To provide services to families and adults with disabilities as close to their home communities as possible and to promote the integration of families and adults with disabilities into communities;
(5)	To utilize the capabilities of local communities and to complement existing public and private community resources, including natural and informal supports provided by family members and friends;
(6)	To give priority to planning, developing, implementing, and evaluating Family Support Programs to develop and enhance the competencies, capabilities, and collective capacity of families and their members with disabilities;
(7)	To promote research and staff development in the principles and practices of family support;
(8)	To assist all State and local public and private agencies and service providers in providing appropriate, flexible, and cost-effective home and community services for families and adults with disabilities;
(9)	To increase and promote interagency coordination and collaboration among State, area, and local government agencies, and among State, area, and local government agencies and private entities that are involved in providing services and supports to families who have members with disabilities;
(10)	To assist families and adults with disabilities in obtaining or receiving the services they need, regardless of whether the services are across county lines or catchment areas; and
(11)	To provide accountability for the Family Support Program through a fair process of determining eligibility, including an appeals process for families or adults with disabilities who have been denied eligibility or services through the Program.
(e)	The activities authorized by and operated pursuant to this Part shall:
(1)	Comply with all relevant State and federal laws and regulations; and
(2)	Supplement, rather than supplant, any existing rights, entitlements, or services for which families and individuals with disabilities may be eligible under other State, federal, regional, or local programs.
(f)	Nothing in this Part shall be construed to mandate the creation or provision of services by State, area, or local authorities.
"§ 143B-152.23.  Definitions.
The following definitions apply in this Part:
(1)	'Adult with a disability' means an adult with a severe, chronic disability that :
a.	Is attributable to a mental or physical impairment or combination of mental and physical impairments;
b.	Is manifested before the person attains age 22, unless the disability is caused by a traumatic head injury and is manifested after age 22;
c.	Is likely to continue indefinitely;
d.	Results in substantial functional limitations in three or more of the following areas of major life activity, self-care, receptive and expressive language, capacity for independent living, learning, mobility, self-direction, and economic self-sufficiency; and
e.	Reflects the person's need for a combination and sequence of special interdisciplinary, or generic care, treatment, or other services that are of lifelong or extended duration and are individually planned and coordinated.
(2)	'Area authority' has the same meaning as in G.S. 122C-3(1).
(3)	'Child with a disability' means:
a.	A child (i) between the ages of birth and five years who is experiencing atypical development or developmental delays, as measured by appropriate diagnostic instruments and procedures, in one or more developmental areas, including cognitive development, physical development, language and speech development, psychosocial development, or self-help skills, or (ii) under age three for whom there is clinical evidence of conditions, or indicators that are associated with developmental delays or atypical development; or
b.	A child between the ages of six and 18 years who has a disability of any type that is:  (i) attributable to a mental or physical impairment or combination of mental and physical impairments, (ii)  manifested before the person attains age 18, and (iii) results in substantial functional limitations in three or more of the following areas of major life activity: self-care, receptive and expressive language, learning, mobility, self-direction, capacity for independent living, and economic self-sufficiency.
(4)	'Culturally competent' means services, supports, or other assistance provided in a manner that:
a.	Is responsive to the beliefs, interpersonal styles, attitudes, language, and behaviors of individuals receiving services; and
b.	Has the greatest likelihood of ensuring maximum participation of individuals in the Family Support Programs.
(5)	'Division' means the Division of Mental Health, Developmental Disabilities, and Substance Abuse Services of the Department of Human Resources.
(6)	'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, sister, brother, or any combination thereof;
b.	Extended blood relatives, such as 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.	A person providing short-term foster care which care includes a plan for reunification of the child with the biological family; or
f.	A person providing long-term foster care for a child with a disability.
	The term 'Family' also includes an adult with a disability who resides with the family of origin or in a separate household, alone or with others, so long as the household is not an out-of-home setting, such as a hospital, nursing home, personal care home, board and care home, group home, or other licensed facility. 'Family' does not include employees who, acting in their paid employment capacity, provide services to children and adults with disabilities in out-of-home settings.
(7)	'Family-centered' means an approach to intervention in which the course and manner of service delivery and resource provision are flexible, functional, and chosen by the family; in which a wide range of formal and informal resources are used to strengthen the family's capacity to meet its own needs; in which professionals act, at the election of the family, as agents or partners of the family and intervene in a manner that promotes family decision making, capabilities, and competencies; and in which fully, community membership of the family is optimized.
(8)	'Family support' means any one or combination of types of financial assistance, including cash subsidy, voucher, or other form of reimbursement, or services authorized by this Part.
(9)	'Family Support Task Force' means the group of families, professionals, and governmental representatives convened by the North Carolina Council on Developmental Disabilities for the purpose of making recommendations regarding the need for family support for persons with disabilities in the State of North Carolina.
(10)	'Financial assistance' means any one or combination of cash subsidy, or voucher, or other form of reimbursement used to meet the unique needs of each eligible family or adult with a disability, which assistance is used to supplement, not supplant, other assistance for which the family is eligible.
(11)	'Legal guardian' means a person who has been designated a guardian under Chapter 35A of the General Statutes.
(12)	'Local Family Support Council' means a private, nongovernmental entity that has been selected to carry out a local program of family support services pursuant to this Part.
(13)	'People-centered' means an approach to intervention in which the course and manner of service delivery and resource provision are flexible, functional, and chosen or expressed by the individual; in which a wide range of formal and informal resources are used to strengthen the individual's capacity to meet his own needs; in which professionals act, at the election of the individual and the individual's family, as agents or partners and intervene in a manner that promotes increased independence, capabilities, and competencies, and in which full community membership of the individual is optimized.
(14)	'State Family Support Council' means the Family Support Council appointed pursuant to this Part.
"§ 143B-152.24.  Family Support Program; services authorized.
The Family Support Program shall consist of financial assistance services and family support services.  Family support services families may secure, by cash or by other means, such as vouchers, under the Families With Disabilities Support Program shall include: respite care; child care; sitter services; recreation; camp; family counseling; family support groups; siblings groups; parent training; homemaker services; personal assistance services; home health care; chores; adaptive equipment; home modification; vehicle modifications; transportation; special diet; utilities; health insurance; home repairs; rent assistance; information and referral; advocacy; person-and family-centered planning; transition planning; supported employment; crisis intervention; assistive technology; case management/service coordination; behavior management; medical; dental; speech therapy; skills training; occupational therapy; evaluation/assessment; physical therapy; nursing; and individual counseling.
The use of financial assistance and services will be determined by the family or adult with a disability, and be provided in a manner consistent with the needs and choices of the family or adult with a disability.
The family support services listed in this section are those for which a family may receive a cash subsidy, receive vouchers, or otherwise be reimbursed.
Nothing in this Part shall mandate the creation or provision of services by any governmental agency or private entity.
"§ 143B-152.25.  Eligibility for Program.
A family is eligible for participation in the Family Support Program if the family:
(1)	Resides in this State;
(2)	Includes a child or adult with a disability; and
(3)	Earns an annual adjusted gross income of less than sixty thousand dollars ($60,000), plus an annual cost-of-living adjustment, except in cases in which severe hardship is demonstrated, in which cases the family may earn more than sixty thousand dollars ($60,000) plus cost-of-living adjustment and be eligible.
"§ 143B-152.26.  Program; organization; administration.
(a)	The Division shall be responsible for the Families of Persons With Disabilities Support Program created by this Part.
(b)	Grants for local implementation of the Family Support Program shall be made to Local Family Support Councils.  Available funds may be utilized for direct costs, including cash subsidies, vouchers, or other forms of reimbursement for services, Division costs related to the implementation of this Part, including family support personnel, travel, supplies, training, evaluation, and costs related to State and Local Family Support Councils, including staff, travel expenses, and Council member honoraria.  The Division shall not utilize appropriated funds for general administrative costs.   Administrative charges assessed by the area authorities shall not exceed four and eight-tenths percent (4.8%) of the amount of the grants to the Local Family Support Councils.
(c)	The Division and the State Family Support Council shall jointly prepare, adopt, annually review, and revise a State Family Support Plan that shall:
(1)	Assess needs, establish goals, and set priorities for the provision of family support services under this Part;
(2)	Provide for coordinated delivery of family support services and ensure procedures for comprehensive services, resources, and programs under this Part; and
(3)	Review and comment on plans and services provided by State agencies that affect the State Plan developed under this Part.
(d)	The Division, in cooperation with State and Local Family Support Councils and other governmental entities, shall implement the State Plan by:
(1)	Providing technical assistance to entities that are developing programs for family support services, Local Family Support Councils, and other agencies and organizations involved in providing services to persons with disabilities; and
(2)	Preparing annually a budget to be submitted to the General Assembly by the Governor.
(e)	The Division, in cooperation with the State and Local Family Support Councils, shall assist in coordinating efforts by the Councils, other governmental entities, nongovernmental entities, and consumer and provider organizations to provide family support services.
(f)	The Division, in cooperation with the State Family Support Council, shall adopt rules necessary and appropriate to administer and implement the provisions of this Part.
(g)	The Division and area authorities, in cooperation with the State and Local Family Support Councils and other appropriate entities, shall conduct a program of outreach and public information regarding the purpose of the Families of Persons With Disabilities Support Program and its availability in participating communities.  The outreach shall include informing potentially eligible individuals and families who are currently receiving services from area authorities or contract agencies, as well as notifying other public land private agencies serving eligible families.   In conducting the public information activities, the Division and area authorities shall involve the media and the Interagency Coordinating Council, established pursuant to G.S. 143B-179.5, the local Interagency Coordinating Councils, and related consumer and provider organizations.
(h)	Within two years of the enactment of this Part, the Division, in cooperation with the State Family Support Council, the area authorities, and other appropriate entities, shall prepare an evaluation of the Families of Persons With Disabilities Support Program, including information based upon a survey of participating families and adults with disabilities, demographic information, impact of the Program on out-of-home placements of children and adults with disabilities, and resource utilization.  The Program shall be evaluated on a biennial basis in subsequent years.
(i)	Acting jointly, the Division and the North Carolina Council on Developmental Disabilities, established pursuant to G.S. 143B-177, in cooperation with State and Local Family Support Councils, shall create procedures for technical assistance and preservice and in-service training, education or staff development of State and Local Family Support Council members and staff in the principles and practices of family support services.
"§ 143B-152.27.  State Family Support Council created; membership; duties and powers.
(a)	The State Family Support Council is created.  The North Carolina Council on Developmental Disabilities and the Division shall appoint 13 initial members within 90 days from July 1, 1995, to serve on the Council until July 1, 1996, as follows:
(1)	Two representatives from each of the four regions utilized by the Division.
(2)	Four family members of legal guardians of children or of adults with disabilities.
(3)	Four adults with disabilities.
(4)	The Director of the Division of Mental Health, Developmental Disabilities, and Substance Abuse Services of the Department of Human Resources ('the Division') or the Director's designee, ex officio.
(5)	The Director of the Council on Developmental Disabilities, or the Director's designee, ex officio.
(6)	A director of an area authority, upon recommendation of and in consultation with the Family Support Task Force.
The Council on Developmental Disabilities and the Division shall appoint representatives in a manner that ensures balanced geographic representation and racial and ethnic diversity.
(b)	The Directors of the Division and the Council on Developmental Disabilities, or their designees, shall act as cochairs of the initial State Family Support Council and be responsible for convening meetings until July 1, 1996.
(c)	Beginning July 1, 1996, the members of the State Family Support Council shall be jointly appointed by the Directors of the Division and the Council on Developmental Disabilities, in consultation with the State and Local Family Support Councils, shall appoint 20 members, at least 12 of whom are adults with disabilities or family members or legal guardians of children or adults with disabilities, as follows:
(1)	Eight representatives from Local Family Support Councils, selected in a manner that ensures balanced representation from the four regions utilized by the Division.
(2)	Four at-large representatives who are family members or legal guardians of children or of adults with disabilities.
(3)	Four adults with disabilities.
(4)	Representatives from the following State entities:
a.	One representative from the Division.
b.	One representative from the area authorities.
c.	One representative from the North Carolina Council on Developmental Disabilities.
(d)	Members shall serve terms of four years, with the exception of members from the General Assembly, who shall serve for a biennium.  Members shall serve until their successors are appointed and qualify.  Any appointment to fill a vacancy on the Council created by the resignation, dismissal, death, or disability of a member shall be for the balance of the unexpired term.  Members may succeed themselves for one term and may be appointed again, after being off the Council for one term.  The Division and the Council on Developmental Disabilities shall make appropriate provisions for the rotation of membership on the State Family Support Council.
(e)	At the first meeting following the appointments, the State Family Support Council shall elect a family member or an adult with a disability or the legal guardian of a child or adult with a disability and a professional as cochairs, who may establish standing and ad hoc committees and task forces that are necessary to carry out the functions of the Council and appoint members to serve on these committees and task forces.  The Council shall meet at least quarterly.  A majority of the Council shall constitute a quorum for the transaction of business.
(f)	Members of the State Family Support Council shall receive travel, honoraria, and subsistence expenses in accordance with regulations promulgated by the Division.
(g)	All clerical and other services required by the State Family Support Council shall be supplied by the Division.
(h)	The State Family Support Council shall have the following duties, which it shall exercise in cooperation with the Division:
(1)	Create standards and procedures for and conduct a competitive request for proposal ('RFP') process for the selection of recipients for available funds.
(2)	Prepare the State Family Support Plan established pursuant to G.S. 143B-152.
(3)	Prepare the language and format of an annual statement of use and evaluation forms to be signed by families participating in the Families of Persons With Disabilities Support Program provided for in this Part.
(4)	Devise procedures for hearing appeals from denial of eligibility or other decisions of Local Family Support Councils affecting families or individuals that seek or receive assistance from the Program.
(5)	Design procedures and guidelines for Local Family Support Councils to use in determining whether families have exhausted other sources of financial support.
(6)	Review and comment upon expenditures by Local Family Support Councils and the performance of local service providers.
(i)	The State Family Support Council shall, consistent with State law, recruit, hire, supervise, and annually evaluate its staff. The recruitment, hiring, and termination of staff shall be consistent with federal and State nondiscrimination laws.  The staff and other personnel, while working for the State Family Support Council, shall be responsible solely for assisting the Council in carrying out its duties under this Part.
"§ 143B-152.28.  Local Family Support Councils created; powers and duties.
(a)	Local Family Support Councils shall have a minimum of eight members.  At least seventy-five percent (75%) of the membership of the Local Family Support Councils described in this section shall consist of adults with disabilities or family members or legal guardians of children or of adults with disabilities who are eligible to receive assistance under the Family Support Programs. Local Family Support Councils shall include adults with disabilities and family members of adults with disabilities in all phases of planning, developing, implementing, and evaluating the Families of Persons With Disabilities Support Program and be staffed by qualified individuals who are trained or experienced in the principles of the Families With Disabilities Support Program.
(b)	The selection and service delivery responsibilities of local councils must correspond with the catchment areas utilized by the Division.  A Local Family Support Council may serve more than one catchment area or there may be more than one local council per catchment area if it is demonstrated that such an arrangement would better meet the needs of area families.
(c)	In cooperation with all State, regional, and local agencies that administer programs that serve families of children and adults with disabilities, local support councils shall:
(1)	Assist families, including adults with disabilities, in exhausting all other sources of governmental financial assistance before using family support funds appropriated by the General Assembly pursuant to this Part.
(2)	Select families, including adults with disabilities, who submit completed applications and are eligible for the Program to receive financial assistance and services by a combination of two methods:
a.	A selection process based on individualized determinations of the needs of families, including adults with disabilities conducted by local support councils and based upon the principles set forth in G.S. 143B-152.22.
b.	Distribute at least fifty percent (50%) of their family support funds through a process of random selection.
(3)	Provide families and adults with disabilities the opportunity to appeal the denial of eligibility or other decisions affecting those who seek or receive financial assistance and services from the Program authorized in this Part.
(d)	Families who are not selected in the random selection process may receive financial assistance and services through the local support councils.  Families who are selected in the random process may submit applications to local support councils for additional financial assistance and services.  The Local Family Support Council shall consider the applications based upon the principles set forth in G.S. 143B-152.22.
(e)	All eligible families, including adults with disabilities, whether or not selected in accordance with subdivision (2)a. of subsection (c) of this section, are eligible to receive financial assistance and services under subdivision (2)b. of subsection (c) of this section.
(f)	The Local Family Support Council may request and be granted, at the discretion of the State Family Support Council, a waiver for distribution of up to ten percent (10%) of its funds for purposes consistent with this Part.
"§ 143B-152.29.  Limitations on services; accountability; continuing eligibility.
(a)	A family or legal guardian shall sign a statement, upon receiving the first payment, assuring that financial assistance and services under this Part will be used for the benefit of the family of a child with a disability or the adult with a disability.  Annually, the family or legal guardian shall be required to complete a survey to report how the financial assistance and services were used to meet the special needs of the family or adult with a disability.  The State Family Support Council shall be responsible for designing the statement and survey forms and for ensuring that the names and other identifying information of families or individuals are kept confidential.
(b)	Nothing in this Part shall prohibit families, adults with disabilities, or legal guardians from using family support funds to obtain or receive family support services in other counties or catchment areas.
(c)	If a family, adult with disabilities, or legal guardian who is receiving financial assistance and services under this Part, changes residence to another area of the State, the family or legal guardian shall continue to receive family support  services for a maximum period of 90 days."
Sec. 2.  There is appropriated from the General Fund to the Division of Mental Health, Developmental Disabilities, and Substance Abuse Services, the sum of five hundred thousand dollars ($500,000) for the 1995-96 fiscal year and the sum of five hundred thousand dollars ($500,000) for the 1996-96 fiscal year to implement the Families of Persons With Disabilities Support Act.
Sec. 3.  This act becomes effective July 1, 1995.