Creating WV ALS Care Services Act

SB 990 Text

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WEST VIRGINIA LEGISLATURE

FISCAL NOTE

2026
REGULAR SESSION

FISCAL NOTE

Introduced
Senate Bill 990
By Senator Deeds
[Introduced February 18, 2026; referred
to the Committee on Health and Human Resources; and then to the Committee on Finance]
A BILL to amend the Code of West Virginia, 1931, as amended, by adding a new article, designated §9-11-1, §9-11-2, §9-11-3, and §9-11-4, relating to creating the West Virginia ALS Care Services Act; listing findings and purpose; requiring Department of Human Services to provide care services coordination and support; providing access to assistive technology, medical equipment, and ramp loan programs; facilitating access to multidisciplinary ALS clinics; and establishing an effective date.
Be it enacted by the Legislature of West Virginia:

Article 11. west virginia als care services act.

§9-11-1. Short title.

This act shall be known as the "West Virginia ALS Care Services Act".

§9-11-2. Legislative findings and purpose.

(a) The Legislature finds that individuals living with Amyotrophic Lateral Sclerosis (ALS) face significant financial and medical burdens, requiring targeted state support to improve their quality of life and to help them remain in their homes under family-based care.
(b) The purpose of this act is to establish programs that provide funding for ALS care services, assistive technology, durable medical equipment, and other essential resources to residents of West Virginia living with ALS and their caregivers.
(c) ALS clinics reduce the cost of care for Medicaid and other insurers by consolidating multidisciplinary services into a single location, thereby minimizing the need for repeated specialist visits and emergency room visits. By providing comprehensive, coordinated care, these clinics improve patient outcomes, reduce hospital admissions, and decrease reliance on costly long-term care facilities. Additionally, ALS clinics facilitate access to clinical trials and advanced treatment options, potentially slowing disease progression and reducing overall healthcare expenditures.
(d) The Ramp Reutilization Loan Program reduces burdens to West Virginia families living with ALS and reduces demand for in-patient institutionalized care by providing cost-effective, reusable ramps that enable individuals with ALS to safely enter and exit their homes. Installing ramps can cost many thousands of dollars and is not typically covered by insurance, leaving many West Virginia families living with ALS unable to pay. Unable to pay for ramps, many individuals with ALS may be forced out of their homes and into institutionalized care or require emergency services for preventable falls and injuries. By allowing people to remain in their homes longer and reducing or delaying the need for assisted living arrangements, the program ultimately helps delay or eliminate the need for ALS patients to enroll in Medicaid, saving taxpayer money and reducing strain on state-funded healthcare and housing assistance programs.
(e) As the disease progresses, the needs of individuals living with ALS increase, making it critical to keep patients in their homes with family-based care. Home-based care improves patient outcomes, enhances emotional well-being, and reduces overall healthcare costs by preventing unnecessary hospitalizations and delaying or eliminating the need for long-term institutional care. By supporting in-home caregiving solutions, the state can ensure that individuals with ALS receive compassionate, cost-effective care in a familiar environment.

§9-11-3. Establishment of ALS Care Services Program.

(a) The Department of Human Services shall administer the West Virginia ALS Care Services Program and distribute funds to the ALS Association for implementation.
(b) The program shall provide funding for the following initiatives:
(1) Care Services Coordination and Support – Ensures that West Virginians living with ALS and their caregivers receive disease education, specialized support navigating complex systems, individualized resource linkage, and ongoing compassionate assistance. This initiative improves well-being and safety while reducing the emotional and financial burdens of ALS and enhancing overall quality of life.

(2) Assistive Technology, Medical Equipment, and Ramp Reutilization Loan Programs – Provides access to expensive but essential equipment for individuals with ALS and their caregivers. These loan programs significantly enhance safety, independence, and the ability to remain in their home and community. By reducing the costs of care on state and federal programs and promoting the reuse of ramping materials and equipment, this initiative also has a positive environmental impact.
(3) Multidisciplinary ALS Clinics – Facilitates access to specialized multidisciplinary care that adheres to the highest clinical care and treatment standards. Research has demonstrated that multidisciplinary ALS clinic care extends life expectancy and improves quality of life. These clinics provide comprehensive family support, reduce the burden of care by addressing multiple needs in a single visit, and help lower healthcare costs for both individuals with ALS and state and federal programs.

§9-11-4. Effective Date.

This Act shall take effect upon passage.

NOTE: The purpose of this bill is to create the ALS Care Services Act.
Strike-throughs indicate language that would be stricken from a heading or the present law and underscoring indicates new language that would be added.

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