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Improved Care Support for the Disability Community

Changes are needed in the home and community care support landscape for all people with disabilities to be able to live independently.

The disability community lacks the adequate support needed to live their lives independently in their homes and in their communities. Necessary and life-saving changes need to happen in the home and community care support landscape for all people living with disabilities. In particular, wheelchair users and people with mobility disabilities are in urgent need of care supports due to the crisis shortage of care workers, the multi-year COVID-19 pandemic (and the effects of Long COVID), as well as the increase of the senior population. View the action plan.

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Groups and Webinars

Upcoming Events:


care working group
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group for parents of children with spinal cord injuries/disorders or other mobility or developmental disorders.REGISTER

Care Support Webinars

Caregiver Panel: Bridging the Gap

The United Spinal Association Care Support Working Group hosted the Caregiver Panel: Bridging the Gap. This national panel brought together caregivers from across the country to answer questions, share their lived experiences, insights, and perspectives on the state of care support in the United States. Panelists discussed current challenges, gaps in the system, and opportunities for meaningful change. Our goal is to help bridge the gap between home health caregivers and individuals with disabilities by fostering understanding, collaboration, and solutions-focused dialogue.


 

Finding, Hiring, Training, and Retaining Care Support Professionals

United Spinal Association’s Care Support Webinar: Finding, Hiring, Training, and Retaining Care Support Professionals provided the opportunity to listen to advocates share their experiences, suggestions, and resources to help find ways to navigate the caregiving crisis and how they manage their own care. Also, care support professionals discussed what they need to provide the right care supports for their clients, and Nancy Taylor, Senior Policy Advisor for the Administration for Community Living (ACL), discussed a few of the many efforts being done to impact the care infrastructure and the services and supports that people seek.

What We Are Working On

A Reliable, Accountable, Professional Care Support Team

  • Raise wages for direct support professionals through Medicare/Medicaid reimbursement rates
  • Provide student loan forgiveness opportunities
  • Allow for family members (including spouses and parents) to participate in paid caregiver/care support programs
  • Expedite services and streamline enrollment processes for those in most need

A Robust and Supported Workforce

  • Work with education organizations as well as credentialing/licensure and certification, apprenticeship and internship opportunities to bolster and supplement the workforce
  • Provide options for a grace period when having to switch service providers
  • Establish oversight for workers and providers in the private and public sector:
    • Training opportunities/opportunities to switch when service providers/workers do not meet the needs of the individual
    • Expiration of certifications/care support professional grants
    • Funding incentives

A Clear and Simple Self-Directed (Person-Centered) HCBS Plan

  • Live in your own home and/or community
  • Allows for consideration of personal preferences and customizable services alongside health and safety needs
  • Choose your own care support worker and/or service provider
  • Provide opportunities to improve health, wellness and fitness programs to achieve greater functional outcomes for individuals to live more independently and integrate more into their communities

United Spinal Association supports improving access to care, quality, and health equity. Our advocates active involvement allows us to provide invaluable input and resources.

Responses to CMS Open Comments:
To promote efficiency and advance equity within Centers for Medicaid and Medicare Services (CMS), our community often has opportunities to provide public comments on how their policies impact us. Learn more: CMS Rulemaking

Ensuring Access to Medicaid Services (CMS 2442-P) Notice of Proposed Rulemaking
Our Response (pdf)

Calendar Year (CY) 2024 Home Health Prospective Payment System Proposed Rule (CMS-1780-P)
Our Response (pdf)

Read More

Faces of Medicaid

Medicaid-funded programs are on the chopping block. Our community shared powerful reflections of the profound need for Medicaid.