Chapter 13 - Developmental Disabilities
Chapter 13 - Developmental Disabilities
The Legislature finds that:
(a) The Territory of American Samoa has a responsibility to provide services for its developmentally disabled citizens in order to aid them in living as complete and normal lives as possible.
(b) Several departments of the Territory are responsible for various services to the developmentally disabled, namely the department of health provides health services, the department of education provides educational services, and the department of human resources provides vocational rehabilitation and other social services.
(c) Lack of coordination among the services and planning activities of the various departments of the Territory results in gaps in the spectrum of needed services, duplication of services, lack of clarity in responsibility for services, and poorly articulated inter-agency programs, thereby reducing the quality of programs for the developmentally disabled.
(d) Because of specific mandates of the departments, it is essential that a body responsible for coordinating services and planning for the developmentally disabled be established outside the departments responsible for services.
(e) There exists within the Department of Human Resources for administrative purposes only, a territorial planning council on developmental disabilities appointed by the Governor and mandated by federal legislation, supported in large part by federal moneys and required by federal law to provide coordination and planning in the field of developmental disabilities.
(f) The purpose of this chapter is to establish the territorial planning council on developmental disabilities and the agency responsible for coordinating services to the developmentally disabled residents of American Samoa.
As used in this chapter unless the context requires otherwise:
(a) "Active treatment" means provision of services as specified in an individualized service plan. These services may include, but are not limited to, activities, experiences, and therapy which are part of a professionally developed and supervised program of health, social, habilitative, and developmental services.
(b) "Case management services" means services to persons with developmental disabilities that assist them in gaining access to needed social, medical, legal, educational, and other services, and includes:
(1) Follow-along services which assure, through a continuing relationship between an agency or provider and a person with a developmental disability and the person's parent, if the person is a minor, or guardian, if a guardian has been appointed for the purpose,
that the changing needs of the person and the family are recognized and appropriately met.
(2) Coordinating and monitoring services provided to persons with developmental disabilities by two or more persons, organizations, or agencies.
(3) Providing information to persons with developmental disabilities about availability of services and assisting the persons in obtaining the services.
(c) "Department" means the Department of Human Resources.
(d) "Developmental disabilities" means a severe, chronic disability of a person which;
(1) is attributable to a mental or physical impairment or combination of mental and physical impairments;
(2) is manifested before the person attains age twenty-two;
(3) is likely to continue indefinitely;
(4) 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 sufficiency; and
(5) reflects the person's need for a combination and sequence of special, interdisciplinary, or generic care, treatment, or other services which are of lifelong or extended duration and are individually planned and coordinated.
(e) "Director" shall mean the director of the Department of Human Resources.
(f) "Habilitation" means the process by which the staff of an agency assists an individual to cope more effectively with the demands of his or her own person and environment and to raise the level of his or her physical, mental, and social functioning. Habilitation includes, but is not limited to, programs of formal structured education and treatment.
(g) "Individualized service plan" means the written plan required by section 4.1307.
(h) "Individually appropriate" means responsive to the needs of the person as determined through interdisciplinary assessment and provided pursuant to an individualized service plan.
(i) "Interdisciplinary team" means a group of persons that is drawn from or represents those professions, disciplines, or service areas that are relevant to identifying an individual's needs and designing a program to meet them, and is responsible for evaluating the individual's needs, developing and individualized service plan to meet them, periodically reviewing the individual's response to the plan, and revising the plan accordingly. A complete team includes the individual being served, unless clearly unable to participate; the individual's family, unless their participation has been determined to be inappropriate; those persons who work most to provide service to the individual, including direct-care or direct-contact staff; and any other persons whose participation is relevant to identifying the needs of the individual and devising ways to meet them.
(j) "Least restrictive" means the least intrusive and least disruptive intervention into the life of a person with developmental disabilities that represents the least departure from normal patterns of living that can be effective in meeting the person's developmental needs.
(k) "Least restrictive environment" means that environment that represents the least departure from normal patterns of living that can be effective in meeting the individual's needs.
(l) "Monitor" means to conduct a systematic, coordinated, objective, qualitative review of services provided by any person, agency, or organization.
(m) "Representative" means any individual who can advise and advocate for a person with developmental disabilities and who shall serve at the request and pleasure of such person; provided that if the person with developmental disabilities is a minor or is legally incapacitated and has not requested a representative, the parent or guardian of the person may request a representative to assist on behalf of the person with developmental disabilities.
(n) "Residence" or "residential" means the living space occupied by the person with a developmental disability, including single-person homes, natural family homes, care
homes, group homes, foster homes, institutional facilities, and all other types of living arrangements.
(o) "Services" means appropriate assistance provided to a person with a developmental disability in the least restrictive, individually appropriate environment to provide for basic living requirements and continuing development of independence or interdependent living skills of the person. These services include, but are not restricted to: case management; residential, developmental, and vocational support; training; habilitation; active treatment; day treatment; day activity; respite care; domestic assistance; attendant care; rehabilitation; speech, physical, occupational and recreational therapy; recreational opportunities; counseling, including counseling to the person's family, guardian, or other appropriate representative; development of language and communications skills; interpretation; transportation; and equipment.
The territorial developmental disabilities planning council shall be placed in the Department of Human Resources for administrative purposes only and assigned the following responsibilities:
(a) Planning. The territorial council shall:
(1) develop, prepare, adopt, and periodically review and revise, as necessary, the territorial plan for developmentally disabled (hereinafter called the territorial plan) in conformance with federal substantive and procedural requirements therefor. The territorial council shall transmit the territorial plan to the Governor for approval, and upon approval shall be submitted to the U.S. Department of Health and Human Services-Administration on Development Disabilities and any other concerned federal government department for appropriate approval. The territorial plan and revisions thereto shall be effective upon the Governor's approval thereof. The territorial plan shall include establishment of goals and priorities of the Territory in meeting the needs of the developmentally disabled, including the establishment of priorities for the distribution of public funds for comprehensive services to the developmentally disabled within the Territory and other matters deemed necessary to achieve normalization of lives of the developmentally disabled. The territorial plan shall in addition provide for coordinated delivery and establishment of comprehensive services, facilities, and programs for the developmentally disabled;
(2) review and comment upon implementation plans prepared and carried out by the various departments of the Territory in carrying out the territorial plan for the developmentally disabled; and
(3) review and comment upon any other territorial plans which affect services to the developmentally disabled.
(b) Coordination of services provided by departments and private agencies. The council shall:
(1) identify services duplicated by departments and private agencies and coordinate and assist in the elimination of unnecessary duplication;
(2) encourage efficient and coordinate use of federal, territorial, and private resources in the provision of services;
(3) designate areas of responsibility for services to both public and private agencies serving developmentally disabled clients, reviewing such designations as necessary. Identify gaps in services to the developmentally disabled and coordinate responsibilities of various public or private agencies for such missing services; and
(4) insure that implementation planning by the various departments is effectively coordinated and that interdepartmental programs receive the full support of all departments involved.
(c) Evaluation. The council shall:
(1) developmentally disabled; and
(2) monitor, evaluate, and comment upon implementation plans of the various public and private agencies for the monitor all ongoing projects relating to developmental disabilities of the various public and private agencies.
(d) Advocacy. The council shall:
(1) advocate for the needs of the developmentally disabled before the Legislature and the public and to the Governor; and
(2) act in an advisory capacity to the Governor, the Legislature, and all concerned department heads on all issues affecting the developmentally disabled.
(3) Report. The council shall:
(4) prepare and submit annual reports to the Governor, the Legislature, and all
concerned department heads on the implementation of the territorial plan. The report presented to the Legislature shall be submitted ten days prior to the convening of the Legislature;
(5) prepare and submit to the United States Secretary of Health, Education and Welfare, through the Governor, any periodic reports the Secretary may reasonably request;
(6) prepare other reports necessary to accomplish its duties under this chapter.
(7) rules. The council shall adopt, amend, and repeal rules necessary for the implementation of this chapter.
The Territorial council shall be appointed by the Governor and shall be residents of the Territory. The council shall at all times include in its membership representatives of the principal territorial agencies (including the territorial agency that administers funds provided under the Federal Rehabilitation Act of 1973, the territorial agency that administers funds provided under the Federal Education of the Handicapped Act, the territorial agency that administers funds provided under the Federal Older Americans Act of 1965, and the territorial agency that administers funds provided under Title XIX of the Federal Social Security Act for persons with developmental disabilities), higher education training facilities, each university affiliated program or satellite center in the Territory, the territorial protection and advocacy system established under section 142 of the developmental disabilities act, local agencies, and nongovernmental agencies and private nonprofit groups concerned with services for persons with developmental disabilities.
(a) At least one-half of the membership of the council shall consist of consumers who:
(1) are persons with developmental disabilities or their parents; or
(2) immediate relatives or guardians of such persons, and who are not employees of a territorial agency which receives funds or provides services under the territorial council, or managing employees, or persons with an ownership or controlling interest of any other entity which receives funds or provides services under the territorial council.
(b) Of the members of the council described in paragraph (a):
(1) at least one-third shall be persons with developmental disabilities; and
(2) at least one-third shall be immediate relatives or guardians of such person, of which at least one shall be an immediate relative or guardian of an institutionalized person with developmental disabilities.
(c) The members of the Territorial Council shall serve without compensation, but shall be reimbursed for any actual and necessary expenses incurred in connection with the performance of their duties under this chapter.
The department shall develop and administer a community service delivery system which may design, implement, administer, coordinate, monitor, and evaluate the programs and services administered by the department for persons with developmental disabilities.
The department may create other systems as required to implement the services necessary for persons with developmental disabilities.
(a) Persons with developmental disabilities shall have the following rights:
(1) to receive the least restrictive, individually appropriate services, including a program of activities outside the residence in accordance with the person's individualized service plan;
(2) to reside in the least restrictive, individually appropriate residential alternative located as close as possible to the person's home community within the Territory;
(3) to the extent it is individually appropriate, to:
(A) interact with nondisabled persons in a nontreatment, nonservice-oriented setting;
(B) live with or in close proximity to nondisabled persons; and
(C) live in a setting which closely approximates those conditions available to nondisabled persons of the same age;
(4) to have reasonable access to review medical, service, and treatment files and to be informed of diagnosis;
(5) to participate in the development of the individualized service plan, if able to participate, or to be represented by a parent, guardian, or other representative as appropriate;
(6) to receive a copy of the person's individualized service plan; and
(7) to privacy and confidentiality, to the extent possible, in connection with services provided to the person.
(b) Rights listed in this chapter shall not be construed to replace or limit any other rights, benefits, or privileges, including other statutory and regulatory due process rights and protection, to which a person with a developmental disability or mental retardation may be entitled.
(c) The enumeration or granting of these rights does not guarantee the provision of services.
(a) The director may:
(1) enter into agreements with the federal government, other territorial departments and agencies, and the counties;
(2) enter into assistance agreements with private persons, groups, institutions, or corporations;
(3) purchase services required or appropriate under this chapter from any private persons, groups, institutions, or corporations;
(4) allocate and expend any resources available for the purposes of this chapter; and
(5) do all things necessary to accomplish the purposes and provisions of this chapter.
(b) To the extent the director deems it appropriate, the director may require a recipient of any territorial funds under this chapter to contribute moneys, facilities, or services for carrying out the program or project.
(c) The director shall establish standards and review procedures to assure that private persons, groups, institutions, or corporations provide the services and facilities necessary to accomplish the purposes for which the funds are disbursed.
The responsibilities of the department to carry out this chapter shall be limited to the resources available to carry out the provisions of this chapter. When such resources are exhausted, no action may be brought by or on behalf of any person or organization in any court to compel the provision of further services.
The territorial council shall require appropriate standards of services to be met by its own services or contractual services including residential, day treatment, and related programs. These standards, including those for intermediate care facility services in facilities for the mentally retarded or persons with related conditions shall, wherever applicable and appropriate, conform to federal standards.