While health research has found positive benefits to caregiving, there can be significant challenges – from physical and emotional strain, to financial costs, to fragmented support systems. Top challenges reported by family caregivers in the neuromuscular disease community include difficulty navigating administrative barriers to get the benefits their loved ones need and the high costs of providing care. Many family caregivers in the neuromuscular community pay out of pocket for necessary items and services, including modifications to make homes and vehicles accessible, medical equipment and therapies, and incontinent supplies.

But we have the power to help change this reality.

Currently, there are two bipartisan bills that will help alleviate some of the challenges faced by caregivers.

• Alleviating Barriers for Caregivers Act (S. 1227 / H.R. 2491) — Requires CMS and SSA – with input from family caregivers, including caregivers with disabilities, and individuals entitled to or filing for benefits – to review and simplify processes for tasks such as establishing eligibility, enrolling in/maintaining eligibility, and utilizing the full benefits available in Medicaid, Medicare, CHIP, SSI, and SSDI.  
• Credit for Caring Act (S.925/H.R. 2036) — Creates a non-refundable tax credit of up to $5,000 to offset some costs of caregiving.

Please urge your members of Congress to cosponsor these bills today!