Action Center

Ensure People with SMA can Access Essential Caregiving Services

Many adults with SMA and families of children with SMA struggle to access in-home caregivers, and often do not receive enough Medicaid caregiving hours to live independently and to meet their true everyday needs. In addition, individuals with SMA and their families describe how they struggle to recruit and retain personal care attendants (PCAs) and other direct care workers to assist with daily activities such as bathing, eating, and getting dressed.

Expanding Medicaid home and community-based services that fund home health aides is critical to ensuring that individuals with SMA can maintain their health and independence.  New legislation supported by Cure SMA, known as the HCBS Relief Act (S. 3118), would temporarily provide states with additional Medicaid resources to help address the caregiving crisis facing individuals with SMA and other disabilities.

Tell Congress to address the caregiving needs of the SMA community by investing in Medicaid home and community-based services.  


INSTRUCTIONS: when you enter your address information, and click on the "send message" button, the prewritten message will automatically be emailed to your Members of Congress. No other action is required. However, you can click inside the prewritten message to tailor it with your own connection to the issue, which Cure SMA may use for other advocacy purposes. Contact advocacy@curesma.org if you have any questions.

    Message Body
    Suggested Message
    Remaining: 0
  • Hide
    • Please call this number:

      Please do not close this window. You will need to come back to this window to enter your code.
      We just sent an email to ... containing a verification code.

      If you do not see the email within the next five minutes, please ensure you entered the correct email address and check your spam/junk mail folder.
      Enter Your Info
      Your Information
      By providing your mobile number, you agree to receive text messages from Cure SMA. Message and data rates may apply. Message frequency varies.
      What is your connection to SMA?
      What advocacy issues are you interested in?
      Home Information

      Enter Your Info