The Better Care Better Jobs Act

The Better Care Better Jobs Act | Sharing Our Stories with Be A Hero | Take Action!

 
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The Better Care Better Jobs Act presents an historic opportunity to significantly improve the lives of our families and all Americans with complex medical needs & disabilities. By investing in home and community based services (HCBS), getting eligible people off of Medicaid waiting lists, providing better support for family caregivers and better jobs for home health workers, a brighter future is within our reach … we just need Congress to pass it.

Learn more about the Better Care Better Jobs Act:

To understand why this bill is SO important, read some of these interviews and articles from Little Lobbyists families, friends, and allies about why we need the Better Care Better Jobs Act:

Disability Advocates Press Lawmakers for Better Home-Based Services, U.S. News & World Report: "‘It wasn't that long ago that a kid like mine would have been institutionalized, automatically institutionalized,’ Hung says. While state Medicaid programs must cover care in institutional settings, such as nursing homes, their Medicaid-funded HCBS programs have limited spots available.”

Disability advocates push for home and community-based care in Democrats’ infrastructure reconciliation plan, The Independent:
“We also know that the pandemic made the existing caregiving crisis dramatically worse, while exposing the true dangers of the institutions and nursing facilities we strive so hard to keep our children out of,” Little Lobbyists’ Elena Hung and Laura Hatcher said in an email. “We need our legislators to fight with us to keep FULL HCBS funding in the infrastructure bill.”

Meet the families lobbying for money to keep their kids at home, Today: “Emma is really thriving. You can see it in her face. Her endurance and strength are improving. She’s bright eyed and she’s excited. She’s engaged,” Staggs said. “I cannot accept an alternative where she’s taken away from that and put into a congregate care setting. We are really running a one room one patient hospital in her bedroom,” Staggs said. “It surprises people to learn that the home and community based services and having in home nursing — with all that it entails, it significantly less expensive than being in a congregate care setting.”

My son’s home health worker is the face of infrastructure, Washington Post: “Too many folks in Congress seem to believe ‘infrastructure’ doesn’t involve people. However, the labor, energy and knowledge of actual people are what build and maintain traditional infrastructure. By investing in the home-care workforce, we can expand and improve how we provide care to millions of people, improve these jobs and create a stronger foundation of support for one another. That sounds like the human face of infrastructure to me.”

The Better Care Better Jobs Act would allow people like me to thrive, The Hill: “I want to tell you my story and why it is so important to me to have the right to live in my own home and get the support I need. I was born in 1966 with cerebral palsy and an intellectual disability. I entered a world that had low expectations for me and people like me. … Today, I live in my own home, and I have a career that I have always dreamed about. … I live with my husband in my own apartment, but I need help. I have a loving family and a loving husband who also has a disability. We need home and community-based services to live our lives. … We are lucky that we have these services. Millions of people with disabilities don’t and many have to wait years to get support. We need to expand the option for home and community-based services to make choice a reality for people like me. The Better Care Better Jobs Act would make sure that people with disabilities are able to choose to live in the community with the help they need.”

Stuck on Waitlists with no outside help: Families struggle to care for relatives, NBC News: “Long waitlists have prompted some families to sign up their young children even before they have a pressing need for services in hopes that they can enroll by the time they are adults and avoid being forced into institutions. … After her 9-year-old daughter was born with Down syndrome, Julie Ross immediately put her on the waiting list out of concern for her future. Niko, who loves dancing and drawing, has a limited range of motion, uses a wheelchair some of the time and needs help with tasks like getting dressed and bathing. Ross has been waiting for so long that she worries Niko may not receive services even by the time she is an adult.”

Home care workers allow me to keep a roof over my head. They deserve a better deal, Virginia Mercury: “If not for home care workers, I couldn’t work as a high school math teacher because it would be impossible to care for Isaac all night and to hold down my job during the day. And if I couldn’t work, my family — Isaac, his younger brother and I — would lose everything. Home care workers literally allow me to keep a roof over our heads. If caregivers were paid more, if they had benefits like affordable health care and sick time, they might choose to remain in the profession longer. If there were better job training options, they might find a path to greater fulfillment at work and possibilities for career advancement. Sadly, that’s not the case. Turnover is high, and the demand for their work far exceeds their numbers.”

Sandra Stein (r) with her husband Matt (l) and their son Ravi (center) [image description: A white man and white woman pose on either side of a young Black man seated in a wheelchair. All three wear t-shirts with the words, “Caregiving Is Infrastructure.”]

Sandra Stein (r) with her husband Matt (l) and their son Ravi (center) [image description: A white man and white woman pose on either side of a young Black man seated in a wheelchair. All three wear t-shirts with the words, “Caregiving Is Infrastructure.”]