A key congressional subcommittee approved legislation that would help address a key caregiving-related challenge faced by individuals with SMA and their families. The U.S. House Energy and Commerce Health Subcommittee approved legislation on May 16 that would make it easier for individuals with SMA and other disabilities to navigate caregiving and other Medicaid home and community-based services (HCBS) in their states. 

In Cure SMA’s Stuck Inside caregiving report, Cure SMA learned that 47 percent of individuals with SMA and their families struggled to find information about paid caregiving options in their state. A Cure SMA review of state Medicaid web pages found state caregiving information hard-to-find, confusing, inconsistent, and not consumer-oriented. A woman with SMA featured in the report shared: “I couldn’t find information directly online about the waiver program that I use. I only found out about it through my Division of Rehabilitative Services counselor.” 

An SMA community recommendation was the creation of a single, one-stop, consumer-friendly website with information about caregiving and other Medicaid community-based services. Cure SMA worked with congressional sponsors to expand an existing legislative proposal (H.R. 670) to help families navigate caregiving options in their state. During the congressional markup, U.S. Representative Ann Kuster of New Hampshire offered an amendment to accomplish the SMA community goal. “My amendment would direct the Department of Health and Human Services to establish a publicly available website where people with disabilities and their caregivers and families can find information about Medicaid services and supports available to them and how to use them." (The Congresswoman’s remarks on the legislation can be viewed at the 2:01:00 mark of the congressional webcast.)

The amended legislation was unanimously approved by the subcommittee and awaits further action in the U.S. House of Representatives. SMA community advocates can learn more about Cure SMA’s efforts to expand access to caregiving at https://www.curesma.org/cure-sma-advocacy/ and take action in support of caregiving services through Cure SMA’s action center.