Please Support Needs of SMA Community in Next COVID-19 Legislative Package
Dear [Decision Maker],
As you prepare the next COVID-19 legislative package, I ask that you address the unique needs of individuals and families impacted by spinal muscular atrophy (SMA), a progressive neurodegenerative disease that can cause debilitating loss of key body functions.
The COVID-19 public health emergency has created new challenges for children and adults with SMA who receive home health care, personal care assistance, and related services that are delivered in a home or community setting. Home and community-based services (HCBS) help individuals with SMA maintain their health, independence, and contributions to their family and community. They are often funded through Medicaid.
HCBS for individuals with SMA are essential and must be maintained--even expanded--to meet the ongoing COVID-19 related needs of the SMA community. That said, the highly contagious nature of COVID-19 threatens these very services, which are typically delivered directly in our homes by an outside direct care worker. Congress must take immediate action to ensure safe and ongoing access to HCBS, such as in-home health and personal attendant care, during the COVID-19 crisis.
As your constituent, I ask that you include the following provisions in the next COVID-19 legislative package:
-- Dedicated Medicaid funding to states (above the 6.2% FMAP increase) to maintain and expand home and community-based services for people with disabilities, including individuals with SMA;
-- Paid leave coverage for when a family member who must fill in to provide care to a family member with SMA because their traditional direct care worker is sick or their program closes; and
-- Funding to ensure personal protective equipment for home care providers and family care providers.
In addition, we ask that you use your authority to ensure that hospitals and medical centers across the country do not discriminate against individuals with SMA in receiving access to health care, supplies, and medical devices during the COVID-19 emergency.
Thank you for considering my views.
[City, State ZIP]