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ALS groups urge Senate to keep $1 million-a-year line in HB 96 for patient services
Summary
Advocates from ALS United Ohio and the ALS Association told the Senate Health Committee the House and executive budgets already include $1,000,000 per year for ALS services and asked the Senate to retain that funding to help rising case loads and cover equipment, case management and caregiver supports.
Marlene Seymour, speaking for ALS United Ohio, told the Senate Health Committee she was asking lawmakers to “support continuing $1,000,000 per year” in the biennial budget for services to people with amyotrophic lateral sclerosis (ALS). She said the amount is already included in the executive budget and the House version of House Bill 96 and pointed committee members to the program line item and an attached state funding outcomes report.
The request centered on a recurring appropriation that Seymour identified as line item 440,485 in House Bill 96. Seymour described ALS as a progressive, terminal neurodegenerative disease that “gradually robs people of the ability to speak, eat, walk and eventually to breathe,” and she said patient counts had risen roughly 20 percent over five years. She said ALS United Ohio provides services such as nurse and social-worker case management, equipment loans, support groups, education, home visits and small financial grants.
Lindsay Jack, representing the ALS Association, also urged the committee to keep the $1,000,000-per-fiscal-year appropriation in HB 96. Jack said the ALS Association used prior state funding to deliver durable medical equipment, augmentative communication devices, home modifications and caregiver education to hundreds of Ohioans and that last year the organization served 444 Ohioans living with ALS, including 60 veterans.
John and Cynthia Collins, who identified themselves as family members receiving ALS services, described how grants and equipment loans helped them when insurance denied items the couple said were standard of care for ALS. Cynthia Collins said the Association’s support had allowed the family to obtain items and services they could not otherwise afford and to navigate benefits such as Social Security disability.
Why it matters: Witnesses said state funding supplements nonprofit fundraising and private insurance gaps, and that patient demand is growing. Committee members heard concrete examples of equipment and care the advocates say the state funding helps supply.
Panel speakers declined to propose statutory changes; their testimony asked only for appropriation-level support to be maintained in the Senate version of HB 96.
The witnesses who addressed this item were Marlene Seymour (ALS United Ohio), Lindsay Jack (ALS Association), John Collins (witness), and Cynthia Collins (witness).
