The Better Care Better Jobs Act: A Light of Hope for Our Families

Little Lobbyists children sitting in chairs usually reserved for legislators in a hearing room in the U.S. Capitol

Like most kids, our children love to dream about what they will do and where they will live when they grow up. But for our kids – who use wheelchairs and walkers to get around, tracheostomies to breathe, feeding tubes to eat, and assistive devices to communicate – being able to survive today and thrive in the future relies on their ability to access Medicaid home and community-based services and support (HCBS).

HCBS, including professional caregiving like skilled home nursing and direct support, help our kids stay safe at home and school and allow us – their parents and caregivers – to go to work, care for our other children, and provide for our families. Access to HCBS is critical to the well-being of entire families, but they are also difficult to access and increasingly challenging to find.

In the U.S., the lack of support for children with complex medical needs and disabilities and their families has a devastating impact. Thousands of kids like ours are already on years-long waiting lists for the HCBS care they need to access their civil right to community inclusion.

Right now, many parents and family caregivers struggle to manage the overwhelming demands of care. We’re missing work to manage doctor and therapy appointments. We’re losing sleep to provide overnight medical care. We’re struggling to afford out-of-pocket medical costs and therapies. The demands are unsustainable and have forced millions of family members (mostly women) to leave the workforce to become unpaid caregivers, sacrificing careers and financial stability to keep loved ones alive and at home.

The frightening truth is that we are drowning in a rapidly worsening care crisis.

When our kids share their dreams about their future as grown-ups in our community, we often find ourselves unable to dream with them. We know our country’s failure to support people with disabilities is a serious threat to our children’s ability to remain in their community. Waiting lists for adult HCBS are decades-long and growing longer. Without meaningful legislation and significant investment, our children cannot escape the nightmare of institutionalization.

The reintroduction of the Better Care Better Jobs Act by Senator Casey and Congresswoman Debbie Dingell provides our families with a light in the darkness.

If passed, this legislation can finally dispel the shadow cast on our children’s future by providing better care so our kids can thrive. It will lighten the overwhelming strain on our families and professional caregivers by creating better jobs that improve our financial stability and provide the critical resources our growing population of aging and disabled loved ones need in their own homes and communities, where they belong.

People with disabilities, seniors, their families, and caregivers live in every state and every community and all of us are impacted by our nation’s widespread and growing care crisis. We urge every legislator to support the swift passage of the Better Care Better Jobs Act to finally address our country’s failing long-term care system before it is too late.

Our families know that #CareCantWait – this is some of what we have to say about the way passing the Better Care Better Jobs Act could improve our lives:

photo of Xiomara, an Asian girl with pigtails and a tracheostomy playing with wooden trains and smiling — *"If not for HCBS, our kids would be hospitalized and institutionalized, I see this very clearly. My daughter is thriving, thriving at home."*

– Elena Hung, Xiomara’s mom and Little Lobbyists co-founder and executive director

Simon a young teen boy with dark hair and glasses and a big smile. Simon is sitting in a wheelchair, wearing a Little Lobbyists T shirt and holding the leash of his service dog in front of the Supreme Court building — “There simply are not enough supports for everyone who needs them. Every day, I hope against hope that before my husband and I become unsuitable to care for him, he’ll get the appropriate support.”

– Laura LeBrun Hatcher, Simon’s mom and Little Lobbyists director of design and communications

Emma a little girl with blond hair and a tracheostomy wearing a little lobbyists blue shirt swiging on a swing — “Emma is really thriving. Her endurance and strength are improving. I cannot accept an alternative where she’s taken away from that and put into a congregate care setting. 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.”
– Stacy Staggs, Emma’s mom and Little Lobbyists director of community engagement

Ravi an African American teenager wearing a little lobbyists shirt — “I cried when he diagnosed me with caregiver fatigue. I am depleted after over a year without paid HCBS caregivers. 20% of Americans have at least one disability. The pandemic has shown that any one of us could suddenly and unexpectedly become disabled or a long-term caregiver, or both. It’s time we organize ourselves for this reality. We must invest, now, in Home and Community-Based Services.”
– Sandra Joy Stein, Ravi’s mom and member of Little Lobbyists

Cole a little boy with blond curls and blue eyes smiling up at the camera — *“Home care, health care, IS infrastructure. Absolutely. Without these home and community based services, he would have to be in an institution.”*
– Victoria Farrell, Cole’s Mom and member of Little Lobbyists

Robert a young man with dark hair, a moustache, and a tracheostpmy is seated in a wheelchair and looking at the camera. — “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.”
– Jeneva Stone, Rob’s mom and Little Lobbyists blog manager

Isaac a smiling young man with a tracheostomy and dark hair wearing a pink shirt and a helmet — “If not for home care workers, I couldn’t work as a 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 would lose everything. Home care workers literally allow me to keep a roof over our heads. If caregivers were paid more they might choose to remain in the profession longer. Sadly, that’s not the case. Turnover is high, and the demand for their work far exceeds their numbers.”
– Kimberly Crawley, Isaac’s mom and member of Little Lobbyists