Thank you to all those who attended last month’s Advocacy Live which focused on the critical shortage across the country of personal care attendants and nursing care for our community of wheelchair users and individuals with SCI/D.
Starting in January 2023, the Government Relations and Advocacy teams will establish a Care Support Working Group so we can come together on policy and advocacy initiatives to improve care support services across the country.
The experiences that many of you shared on last month’s Advocacy Live strongly support what United Spinal has been telling Congress, Administration officials and policymakers at all levels of government:
- In addition to the emotional and physical demands of managing a disability, wheelchair users face a complex, opaque array of government and/or private programs and must spend endless hours trying to navigate these programs. Individuals who are newly injured or diagnosed are especially inundated with overwhelming amounts of information.
- For others, strict income and asset requirements in existing programs, exclude them from participation in most, if not all, public and private care support programs.
- We must address the burdensome costs to those wheelchair users who do not qualify for existing programs because of low-income limits.
It is clear that major changes must be made to improve the current system of delivering all forms of care to our community. The critical need of care is a simple issue of dignity.
Every individual who needs a care support system should receive person-centered and self-directed care. This means:
- Living in your own home, in your community of choice.
- You choose your own support team, by creating and customizing your support, with the option of expediting services where necessary and changing your team as your needs and situation changes.
You can join us in advocating on behalf of critical care needs, including skilled nursing, wellness and fitness, care support training, personal care (dressing, transferring etc.), transportation and other community support needs.
You can help us work on common sense, practical solutions, including raising personal care attendant and nursing wages; creating professional improvement opportunities for them; and, allowing family members (including spouses and parents) to participate in paid care support programs, all of which would improve access to a reliable, accountable and professional care support team.
If you or your members would like to participate in the new Care Support Working Group, to help us drive change, please contact United Spinal’s Government Relations Coordinator, Rebecca MacTaggart at rmactaggart@unitedspinal.org or Grassroots Advocacy Manager, Annie Streit, at astreit@unitedspinal.org.