Little Lobbyists Statement for the Record, U.S. Senate Hearing on “An Economy That Cares: The Importance of Home-Based Services”

The following statement was submitted by Little Lobbyists to the U.S. Senate Special Committee on Aging to be included in the record of the March 23, 2022 hearing on “An Economy That Cares: The Importance of Home-Based Services”

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

Our children love to play and see their friends at school. They watch their favorite Disney movies over and over, fly high on the playground swings, and try to stay up past their bedtime for one more story. Our kids also use wheelchairs and walkers to get around, tracheostomies to breathe, feeding tubes to eat, and assistive devices to communicate. Home skilled nursing and direct support services help our kids stay safe at home and at school with access to medical care and therapies that help them grow and learn.   

As parents and caregivers we are grateful for every medical intervention, durable medical equipment, service and support that helps our kids live their best lives. We never tire of watching our children’s joyful exploration of their world, though we’re often too tired to read even one more story.

The truth is that many parents and family caregivers are struggling to manage the overwhelming demands of care at home and outside work necessary to sustain our families. At night, we’re losing sleep to provide overnight medical care. During the day, we’re missing work to manage doctor and therapy appointments. As inflation rises and the cost of everyday necessities like food and housing increase, we’re also struggling to afford equally necessary out-of-pocket medical costs and therapies. 

In the United States, the lack of support available 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 Medicaid home and community based services and supports they need to fully access their civil right to community inclusion. To our families with children who qualify for a Medicaid waiver based on their disabilities and medical needs, the fact that there are long waiting lists to receive care at home but NO waiting lists to be confined to a residential institution to get that same care – is both nonsensical and immoral. We know that home and community based care costs less than half of institutional care; it saves taxpayers money. Moreover, children and all people with and without disabilities, belong in their homes and communities with their families who love them. It is their civil right upheld by the U.S. Supreme Court.

While waiting for critical care, families are left to manage on their own. Millions of parents (mostly women), have been forced to leave the workforce to become unpaid caregivers, sacrificing their own careers and their family’s financial stability to keep their children alive and at home. 

It’s also true that over the past two years of the ongoing pandemic, many families lost whatever little support they had. As COVID-19 took a deadly toll on congregate care settings and over a million more Americans became newly disabled, waiting lists for Medicaid home and community based services became even longer and quality care is now nearly impossible to find. COVID-19 was too great a risk for severely underpaid home care workers, many who are women of color with families of their own to support. 

Today, the impact of our country’s care crisis is spreading rapidly with no end in sight.

As our children grow up to become adults with complex medical needs and disabilities, Medicaid home and community based services are crucial for them to live fulfilling, self-directed lives in their own homes and communities – and to prevent them from being forced into dangerous and oppressive institutions. But without significant investment, the support our disabled children and all disabled people need may not be there in the future. Current waiting lists for adult Medicaid home and community based services are decades-long and growing longer. 

We must urgently change our country’s failing long term care system for our kids before it is too late. Our children need better care so they can not just survive – but thrive. Our families and professional caregivers need better jobs so we can improve our financial stability and build the care infrastructure our growing population of aging and disabled loved ones need and deserve. 

Economists have said that the Better Care Better Jobs Act will grow our economy, allow over a million unpaid family caregivers return to work, and create over half a million good paying care jobs. 

The impact investing in caregiving will have on our economy is important. Even more important is what our families have to say about how passing the Better Care Better Jobs Act would improve their lives:

Laura Hatcher