What would you like to see the Christopher & Dana Reeve Foundation, along with other disability policy organizations, focus more attention on when it comes to caregiving?
Disability policy organizations should focus more attention on advocating for homecare companies to increase their wages towards their direct care workforce and changing the qualifications on the amount of care hours someone can receive because it is based off the number of people in a household and the individual’s salary.
This is personal to me because I want people who are receiving care to be able to get married to a significant other without their income or living status affecting benefits. In Michigan, if you are single, you count as a household of one, but if you are married, the assets of you and your spouse are combined to determine your qualification for Medicaid.
I once lived with three other roommates, but we did not know each other. This was a communal living situation. The rent was cheap, and we all had our own individual lives. According to the Michigan Department of Health and Human Services (DHHS), since there were three other people living in the house, my “household” had four occupants total, which in turn limited me to the amount of care hours I could receive from an agency. I did not feel comfortable asking someone who I barely knew for assistance.
You served on the Family Caregiver Advisory Council for three years; can you talk about your experience being the only wheelchair user? What would you like to see changed in the next two years?
The past three years of serving on the Council have been exceptional. I have a mixture of feelings. One was being able to take pride in the work I was contributing, especially since I was the only wheelchair user. I was able to represent the community and had the feeling of relief that there was someone on the Council who receives care.
I also felt concerned because I was the only wheelchair user who receives care. The changes in the next two years are simple. I wish for the FCAC to have at least two or three additional wheelchair users or, at the very least, two care recipients, especially the representation of someone who is young and living with a disability. One wheelchair user is beneficial, but this is the bare minimum and is not ideal or advised.
I know that the Reeve Foundation nominated several individuals to serve during the next term. I also recommended a few individuals who use a wheelchair. It is my hope that the Council will accept at least one, if not all, to serve in the next term.
ACL is currently accepting public comments on the Strategy, and the comment period will remain open through November 30.
If you would like to lend your voice to advance legislative efforts to improve life for people living with paralysis, sign up to become an online advocate for the Reeve Foundation.
For more information on becoming a Regional Champion, please contact Gerard Arnum, our Grassroots Advocacy Manager, at garnum@christopherreeve.org.