United Spinal was excited to recently partner with the White House focusing on President Biden’s proposed historic investment into home and community-based services. For decades, people with disabilities have had to face a caregiving system that is underfunded and outdated. Funding for Medicaid home and community-based services (HCBS), which helps to keep people with disabilities in our own homes and part of our communities, has long been neglected. People get stick on waiting lists for years. The direct care workforce is underpaid and family members are often forced to become unpaid caregivers for their loved ones.
Many thanks go to Cedric Richmond, Director of the Office of Public Engagement and Senior Advisor to the President who gave a rallying keynote address highlighting the need for this critical investment for the disability community and to Emily Voorde, Associate Director, Office of Public Engagement who did a wonderful job moderating the roundtable where close to 150 attendees were lucky enough to hear featured United Spinal Association advocate voices from all across the country:
- Kyla Claussen who is 37 years old from Avoca, IA and lives with an unknown progressive neuromuscular disease.
- Keaston White – United Spinal Association Board Member from Lawrenceville, GA who has been living with a spinal cord injury for the past 20 years.
- Ken Ryno along with his wife and physical therapist and caregiver JoAnn Sienkiewicz – Ken is a Board Member, Northeast Pennsylvania Chapter of United Spinal Association, has been living with quadriplegia for 43 years and is from Kunkletown, PA.
- Carol Dunn of Lewiston, ME speaking on behalf of her 43 year-old non-verbal son Chris.
The United Spinal Advocacy & Policy team will continue to advocate for each of the panelists as well as for increased investment into home and community-based services on behalf of all of our members.
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