Care Can't Wait: HCBS Now! (by Jamie Davis Smith & Rob Stone)
Jeneva Stone, Jamie Davis Smith, Elena Hung and Rob Stone [image description: Three women with light skin wearing dresses and one light-skinned man seated in his wheelchair pose on a beige pebbled sidewalk with the U.S. Capitol, flanked by green trees, in the background. Two of the women hold photo posters of their children, who are wearing Little Lobbyists t-shirts.]
On May 5, 2022, Little Lobbyists were part of a Home and Community-Based Services (HCBS) rally on the National Mall along with the Service Employees International Union (SEIU) to urge Congress to pass the Better Care Better Jobs Act (BCBJA). The BCBJA would provide badly needed funds to HCBS programs, reduce or eliminate waiting lists, enable states to raise wages for home care workers, and provide funds for better training. The BCBJA would create 500,000 new jobs and allow 1.1 million family caregivers to return to work. There are currently over 800,000 Americans on waiting lists for HCBS programs.
The Care Is Essential Day of Action on Capitol Hill featured many speakers with disabilities. Representative Debbie Dingell (D-MI) and Senator Bob Casey (D-PA), champions of the BCBJA in the House and Senate, gave speeches on the importance of home care. The full video can be viewed on the SEIU Facebook page.
Little Lobbyists members Jamie Davis Smith (mother of Claire) and Rob Stone delivered remarks at the event. Jamie gave hers by voice, and Rob used his eye-controlled assistive communication device to speak his. A transcript is below, along with a video clip of the event.
Rob Stone:
Home and Community-Based Services give me control of my own life. I can live where I want. My home care staff help me do the things I want to do. Like go to art classes and run my own art website.
I also take music classes. I play Challenger Baseball. And I’m an advocate with Little Lobbyists and The Arc of Maryland.
President Biden wants more money for HCBS so I can pay my employees a higher wage. And hire more staff. President Biden wants to end waiting lists.
I’m mad at Republicans because not one of them will help Joe Biden help people like me so we can live at home with dignity and independence. Home care now!
Jamie Davis Smith:
My name is Jamie Davis Smith. I wear a lot of hats as an attorney, writer and advocate but my most important job is to be a Mom to my four children.
One of my children, Claire, is 15. She loves being near water, amusement park rides, watching movies and eating an entire container of ice cream in one sitting. She has friends at school and loves going to parks with her siblings.
She loves doing all the things kids her age enjoy. But because she has complex medical needs and multiple disabilities she needs some help to do them. When Claire was younger, she did not have access to home and community-based supports and I had to give up not just my job, but my entire career to care for her.
Because Claire did, eventually, get access to home and community-based supports, she has been able to grow up where she belongs – at home with her family. She has been able to do things that would have been unimaginable without these supports, simple things like going to summer camp and playing at our neighborhood playground.
It wasn’t all that long ago that kids like Claire were forced to live in institutions, hospitals and even nursing homes. That’s inhumane.
Jeneva and Rob Stone [image description: A mother and son with light skin pose on a grassy area between two giant paintings. The mother is standing, the son is seated in his wheelchair. The painting on the left is a pair of hands in blue with the words "Care Is Essential" between them, with a round pink and gold background. There's a yellow flower to the right. The other, to the right, has a gold background with a red starburst in the middle. At the lower edge of the starburst are three fisted hands, raised. Around the starburst are the following words, in blue: Protect Us, Respect Us, Pay Us.]
Today I’m joining home care workers, seniors, and families across the country to urge Congress to pass the Better Care Better Jobs Act, which would provide badly needed funding for home and community-based services, raise home care wages, and create better jobs. It would also allow 1.1 million family caregivers to return to work. Currently, over 800,000 Americans are on state waiting lists due to lack of funding for Home and Community-Based Services.
Claire is just one of 61 million disabled Americans. We are speaking with one voice to say: Care can’t wait. We need action and we need it now.
Since Claire was born, all of my major decisions have been made with the singular goal of ensuring that she retains her access to home and community-based services. We have given up jobs and have had to live far away from family in order to keep Claire’s supports in place. We recently looked into moving again to access school programs for Claire’s siblings and to be closer to my parents, who are not well and require a lot of support as well.
What I discovered was that, if we moved to another state, Claire would be stuck on the bottom of a waitlist for at least seven years. This prospect was terrifying. If my family had to pay for the services Claire currently receives, it would cost us almost what we bring home every month.
I know of no other group of people in this country who have to endure a years’ long wait if they want to take a job or live closer to family or just want an adventure. We must invest in home care fully, and we must do it now.
And even though Claire has HCBS now, the shortage of home health care workers always looms over us. Claire’s home care workers are caring, hard working women. They want the best for her. But they work for low wages and do not get paid time off if they are sick or need vacations. Some lack reliable care for their own children. Some home health care workers stack multiple jobs together, working seven days a week, fifteen or more hours a day, just to make ends meet.
Low wages make it hard to retain wonderful home care workers and makes it almost impossible to attract new caregivers. It means that disabled people lack the stability they need to thrive in their communities.
Anyone who says they support American families needs to take action, and they need to do it now. We need a big investment in home care.
Many of our leaders in Washington have heard us. They listen and they understand. But not one Republican, not a single one, will commit to take action towards ensuring that people with disabilities, like Claire, can access the care they need.
[image description: Two men and two women stand on a temporary stage with the U.S. Capitol in the background. A man seated in his wheelchair is looking at an AAC communication device, which is mounted on a pole connected to his wheelchair. One of the women holds a microphone near the communicator’s speaker. The other two persons stand behind them. To the left of the stage is an ASL interpreter wearing black clothes. She has light skin. To the right of the stage is a woman wearing a rainbow striped dress who has dark skin.]
Jamie Davis Smith is a mother of four who lives in Washington, DC. She is an attorney, writer and disability rights advocate.
Rob Stone is a health care and disability rights advocate who lives in Bethesda, Maryland. He is also an artist.