Help Push Investments in Personal Care Attendants and Other Home-Based Services Across the Finish Line!

Ask your U.S. Senators to support the Build Back Better Act provisions that invest in Mediciaid home and community-based services and the Direct Care Workforce

The Build Back Better Act (H.R. 5376) that was recently approved by the U.S. House of Representatives includes key provisions that would help individuals with SMA and others to access in-home care and recruit and retain qualified personal care attendants (PCAs) who deliver these essential home and community-based services.  

Access to PCAs and other in-home care was among the top priorities identified by individuals with SMA and their families. However, many individuals struggle to recruit and retain direct care workers due to workforce shortages in their states. In addition, state Medicaid agencies rarely approve the caregiving hours a person with SMA truly needs to live independently.

Take Action

The caregiving provisions to increased federal funding to states to expand Medicaid HCBS and grand funds to promote hiring and retaining PCAs and other direct care workers have cross a major threshold. Next, we need these provisions to be approved by the U.S. Senate. 

Ask your Senators to support the Medicaid HCBS and Direct Care Workforce provisions in the Build Back Better Act. 

INSTRUCTIONS: when you complete the "required fields" (below left) and click on the "Send Message" button, your message (below right letter) will automatically be emailed to your Members of Congress. No other action is required. However, please consider personalizing your message (using the below box) by adding your own experience. Cure SMA can amplify your experience in our own advocacy with legislators. Contact advocacy@curesma.org if you have any questions.

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(Maximum response 255 chars, approx. 5 rows of text)


Send This Message

Support the Build Back Better Act Investments in Medicaid Home and Community-based Services

Dear [Decision Maker],

As your constituent and a supporter of Cure SMA, the leading national organization that advocates for individuals with a neuromuscular disease known as spinal muscular atrophy (SMA), please support the Build Back Better Act provisions that invest in Medicaid home and community-based services (HCBS) and address the direct care workforce shortages.

Medicaid HCBS are essential services that assist individuals with disabilities, including those with SMA, with their routine daily activities, such as bathing, getting dressed, and eating.

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Medicaid HCBS are cost-effective for states as an alternative to more costly nursing facility care. In addition, individuals with disabilities and older adults prefer to receive their long-term services and supports in their homes rather than in an institutional setting.

Unfortunately, there continues to be wait lists in accessing home care. In addition, many individuals who qualify for HCBS face challenges in finding and keeping direct care workers. While direct care jobs can be rewarding, studies, including one by the U.S. Government Accountability Office (GAO), have quantified the high turn-over rate, pointing to low pay, no or limited benefits, lack of career mobility, and high emotional and physical demands, including potential for on-the-job injuries.

The Build Back Better Act that was approved by the U.S. House of Representatives would help address the caregiving challenges faced by individuals with SMA and others by expanding access to HCBS through an increased federal Medicaid match and strengthening the direct care workforce that delivers these essential services through grants that can be used for competitive wages, benefits, and other supportive services.

These investments will help to ensure children and adults with SMA can access the in-home supports they need to maintain their health and independence. Please support these caregiving provisions when the U.S. Senate considers the Build Back Better Act legislation. Thank you for considering my views.

Sincerely,

[Your Name]
[Your Address]
[City, State ZIP]
[Your Email]

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