1997 Regular Session

To: Public Health and Welfare; Appropriations

By: Representative King

House Bill 1644



SECTION 1. There is created an Individual and Family Support Program, to provide in-home services and equipment to persons with disabilities and families, which include members who are persons with disabilities, for the purpose of empowering those citizens to have a higher quality of life by being more independent in their communities and avoiding institutional placement. The Program will be created by redirecting and/or developing new long-term care dollars and redesigning regulations to encourage community-based individual and family support services in lieu of institutional services and requiring that all such community-based service programs conform to principles ensuring consumer-control, choice of service models, availability to eligible recipients and eligibility based on functional needs, not medical diagnosis, type of disability or age. The program is based on the premise that recipients who so desire should be able to avoid nursing home and other institutional placement and choose their own preferred mode of non-institutional long-term care.

SECTION 2. The following definitions shall apply to this act:

(a) "Activities of daily living (A.D.L.s)" means personal care activities that are routinely part of daily living, including, but not limited to, eating, toileting, dressing, grooming, personal hygiene, bathing and transferring.

(b) "Agency" means the Department of Human Services.

(c) "Consumer" means an individual with a disability.

(d) "Consumer-directed" means a mode of service delivery that gives the recipient of individual and family support services (the consumer) maximum control to select and manage their own service plan. This is the preferred mode of service delivery.

(e) "Disability" means a severe chronic cognitive, psychiatric, sensory, and/or physical disability of a person that:

(i) Limits ability to perform one or more activities of daily living (A.D.L.s); or

(ii) Limits ability to perform two instrumental activities of daily living (I.A.D.L.s);

(iii) Requires substantial supervision, episodic or short-term crisis assistance; or

(iv) Needs assistance with the performance of health-related tasks; or means

(v) A child under the age of six who is at risk of developing a disability, to be determined if the child has substantial developmental delay or specific congenital or acquired condition that has a high probability of resulting in a developmental disability if services are not provided;

(f) "Family" means the person or persons with whom the person with a disability resides and who are primarily responsible for the physical care, health and nurturing of the individual with a disability. The term does not include hospitals, sanitariums, nursing homes, group homes or any other similar institution.

(g) "Financial assistance" means a monetary payment to an eligible person with a disability and the family of a child with a disability needed to defray the cost of support services related to the disability. Financial assistance includes, but is not limited to, cash subsidies, cash allowances, cash vouchers or reimbursement to enable eligible persons to acquire support services.

(h) "Functional need" means the need for personal assistance based on abilities and limitations of individual consumer, regardless of age, medical diagnosis or other category of disability.

(i) "Individual and family support services" means goods, services, and financial assistance to an individual with a disability or the family of such an individual that are provided to meet the goals of:

(i) Providing a quality of life comparable to that of similarly situated individuals not having a disability and families not having an individual with a disability;

(ii) Preventing premature or inappropriate out-of-home placement;

(iii) Individual and family support services include, but are not limited to the following:

1. Communication services.

2. Counseling services.

3. Crisis intervention.

4. Day care.

5. Dental and medical care that are not otherwise covered.

6. Equipment and supplies.

7. Financial assistance.

8. Home and vehicle modifications.

9. Home health services.

10. Homemaker services.

11. Parent education and training.

12. Personal assistance services.

13. Recreation.

14. Respite care.

15. Self-advocacy training.

16. Service coordination.

17. Specialized diagnosis and evaluation.

18. Specialized nutrition and clothing.

19. Specified utility costs.

20. Therapeutic and nursing services.

21. Transportation.

22. Vocational and employment supports.

(j) "Instrumental activities of daily living (I.A.D.L.s)" means activities that support the activities of daily living, including, but not limited to, taking medications, managing money, preparing meals, shopping, child care, light housekeeping, using the telephone or getting around the community.

(k) "Program" means The Individual and Family Support Program created in Section 1 of this act.

(l) "Statewide planning committee" means a committee composed of people with disabilities and their family members that supervise and direct the planning and implementation of the program.

SECTION 3. The following principles shall be adhered to in the development and ongoing management of the program.

(a) Individuals with disabilities and their families are best able to determine their own needs and should be empowered to make decisions concerning necessary, desirable, and appropriate services.

(b) Individuals with disabilities should receive the support necessary for them to live as independently as possible at home.

(c) Family support should be responsive to the needs of the entire family unit.

(d) Supports should be sensitive to the unique needs and strengths of individuals and families.

(e) Supports should build on existing social networks and natural sources of support.

(f) Supports may be needed throughout the life-span of the individual who has a disability.

(g) Supports should encourage the integration of people with disabilities into the community.

(h) Support services should be flexible enough to accommodate unique needs of individuals and families as they evolve over time.

(i) Support services should be consistent with the cultural preferences and orientations of individuals and families.

(j) Support services should be comprehensive and coordinated across the agencies that provide resources and services, or both, to individuals and families.

(k) Individual and family community-based support services should be based on the principles for sharing ordinary places, developing meaningful relationships, learning things that are useful, and making choices, as well as increasing the self-esteem and status, and enhancing the reputation of the individuals served.

(l) Supports should be developed in the state that are necessary, desirable, and appropriate to support individuals and families.

(m) The policies of the Program should enhance the development of the individual with a disability and the family.

(n) A comprehensive, coordinated system of supports to families effectively uses existing resources and minimizes gaps in supports to families and individuals in all areas of the state.

(o) Service coordination is a goal-oriented process for coordination of the range of services needed and wanted by persons with developmental disabilities and their families, and is independent of service provision.

(p) No resident who wishes to remain in an institutional setting will be forced to receive support services in a non-institutional setting.

SECTION 4. The program will be developed through the following method:

A twenty-five member statewide planning committee shall be appointed and convened by the Governor with membership to include a majority of people with disabilities and family members and the balance to include advocates of people with disabilities and their families and other relevant parties. Agency representatives shall serve as ex-officio members of the committee. The committee will assist in the development of a plan of individual and family support services based on the principles and standards described in Section 3 of this act. The plan shall be developed by January 1, 1998, and, at a minimum, shall:

(a) Create an eleven-member Individual and Family Support Services Policy Board, appointed by the committee, made up of a majority of people with disabilities and family members, to assist the state in the design, implementation and evaluation of the state's Individual and Family Support Program;

(b) Outline a transition process, with action steps and time-lines, describing how the state will move from institutional services to individual and family support services that are more cost-effective and responsive to the desires and preferences of recipients;

(c) Describe a process for consolidating all non-institutional individual and family support programs funded through the medicaid program or the medicaid waiver program by January 1, 2000;

(d) Describe the type of individual and family support services to be provided;

(e) Describe the methods of delivery of individual and family support services and how such services will be provided statewide;

(f) Evaluate the feasibility of further reducing costs and addressing recipient needs and preferences through the provision of auxiliary services such as assistive technology and home modifications;

(g) Describe an intake process that will be uniform throughout the state;

(h) Describe the uniform assessment tool that will be used to determine eligibility;

(i) Describe the standards and mechanisms for co-payment/cost sharing and methods used to determine income of people with disabilities and their families;

(j) Determine quality assurance outcomes and safeguards against physical, emotional or financial abuse and exploitation;

(k) Develop an appeals process;

(l) Designate an entity to conduct consumer assessments;

(m) Describe how the barriers and disincentives that currently limit the availability of individual and family support services (e.g., few local providers, low fees/wages, absence of benefits, lack of certification standards) will be removed; and

(n) Address issues of provider and recipient liability.

SECTION 5. (1) All noninstitutional individual and family support services programs funded through or by the agency(ies) shall meet the following minimum standards:

(a) To the maximum extent possible, consumers who so desire shall select, manage and control their individual and family support services;

(b) Eligibility shall be based on functional needs, not medical diagnosis, type of disability or age;

(c) Services will be provided in the individuals' and families' homes and other independent living environments including, but not limited to, school, work and recreational settings.

(d) The service system shall be capable of providing individual and family support services twenty-four (24) hours a day, seven (7) days a week, and, when necessary, provide back-up and emergency services.

(e) Co-payments and cost-sharing will be required of individuals and families whose adjusted gross incomes exceed two hundred twenty-five percent (225%) of the federal poverty level. However, copayments and cost-sharing requirements will be structured so that they are not a disincentive to participation.

(f) Each consumer's program of services will be based upon a mutually-agreed upon individual service plan jointly developed by the individual/family and the provider-agency. The individual/family will be given an opportunity to choose between different service delivery options including vouchers, consumer-directed individual provider models and consumer-directed agency models. To the maximum extent possible, consumers will be able to select and to hire whomever they choose as personal assistants, including family members.

(g) Consumers will be offered training on how to manage and coordinate their service program (e.g., select and dismiss their support service provider, financial management).

(h) All providers of individual and family support services shall assure that consumers are fully informed of and accorded their rights and options with respect to selecting, managing, and changing their service providers and their rights to privacy and confidentiality. Consumers who are dissatisfied with their services have the right of appeal to the appropriate agency governing board.

(i) All persons providing personal assistance shall be paid at least one hundred fifty percent (150%) of the federal minimum wage or a comparable daily rate and be offered health insurance and other benefits.

(2) Eligibility for individual and family support services under this act shall be for persons of all ages who have a disability as defined in Section 2.

(3) A comprehensive assessment of support service needs shall be made for each applicant to determine eligibility for services and the applicant's ability to perform each activity of daily living and each instrumental activity of daily living. The applicant's self-evaluation of his or her needs and abilities, or the applicant's formal representative's evaluation of his or her needs, shall be an integral part of this assessment.

(4) The Individuals and Family Support Services Policy Board shall establish a uniform instrument to assess eligibility for individual and family support services.

(5) The consumer, or, where appropriate, their family, have the right to acquire the assessment from any public or private source that is, as determined by the Individuals and Family Support Services Policy Board, properly certified and licensed.

SECTION 6. An initial individualized plan of service shall be developed with each consumer of the individual and family support services, or, where necessary, their family, at the time of the assessment. The individualized plan of service shall:

(a) Be developed with the person with a disability, or, when appropriate, the individual's family or other legal representatives;

(b) Be approved by the person with a disability, or when appropriate, his or her parent, guardian or other representative;

(c) Be given to the consumer and family in writing or other appropriate and understandable format;

(d) Specify:

(i) Services to be provided;

(ii) Number of hours of service to be provided;

(iii) Alternate sources for support services (informal support from friends, neighbors, etc.) used;

(iv) Means to ensure back-up and emergency support services will be provided, and method for consumer to access these back-up and emergency services;

(v) Method of service delivery (i.e. voucher, agency provider service option);

(vi) Frequency of reassessment;

(vii) Means to adjust services and hours when changes in need occur;

(viii) Mechanism to coordinate support services with other health care services received by the individual;

(ix) Degree and frequency of supervision necessary for the effective delivery of support services;

(x) Amount of pay or cost sharing, if any;

(xi) Outcome measures used to assess the quality of services;

(xii) Complaint and appeal procedures.

SECTION 7. (1) The Committee shall develop a quality assurance instrument that will assess service quality for each consumer.

(2) The service quality assessment shall be based on the outcomes of the person with a disability, including, but not be limited to, integration into the community, increased mobility, increased productivity and/or self-direction.

(3) The service quality instrument will also measure the extent to which the services provided:

(a) Safeguard the health and safety of the consumer, recognizing that risk-taking by the person with a disability is an important freedom;

(b) Are developed by, or with meaningful and relevant input from, the consumer or his or her representative;

(c) Achieve the goals specified in the individualized plan of service; and

(d) Protect the consumer, to the maximum extent possible, against abuse, neglect and exploitation.

SECTION 8. (1) Financial assistance, or the value of goods or services provided to eligible individuals or families shall not be deemed as income for any purpose, and is exempt from all state and local taxation and reporting.

(2) Financial assistance shall not be alienable by sale, assignment, garnishment, executions or otherwise.

(3) The individual or family recipient shall decide how financial assistance is used subject to the following:

(a) The family or individual recipient shall submit an annual report stating generally how the assistance was used.

(b) The family or individual recipient shall report promptly any event or condition affecting continued eligibility for support including, but not limited to:

(i) Death of a family member.

(ii) Death of the responsible family adult.

(iii) Placement outside the home.

(iv) Change of state of residence.

SECTION 9. This act shall take effect and be in force and after July 1, 1997.