Living Innovations Connections
Medicaid is Making a Difference
Mosaic’s President and CEO Linda Timmons has said many times that to make a positive difference in the lives of people with intellectual and developmental disabilities (IDD) and other diverse needs, we must advocate for them.
In recent months, with ongoing threats to the critical Medicaid funding that supports our work, advocacy has become even more important.
Medicaid is a lifeline for an estimated 6 million people in the U.S. who use Long-Term Services and Supports, 72% of which receive home- and community-based services, which often provide more consistency, a deeper sense of community involvement and more choice about how and with whom a person spends their days.
The recent public discussions surrounding Medicaid are deeply concerning for Robyn Agu, Lori Ann and Cheryl and Dan Kinsinger, who share how the supports provided by Mosaic through Medicaid makes a difference to the people Mosaic serves.
Illinois Couple Becomes Strong Voice for Preserving Medicaid, Say Funding is ‘Vital’ for Son’s Future
For some people, retirement is an opportunity to travel, pick up a new hobby or just relax.
But when Dan and Cheryl Kinsinger retired from their jobs at Caterpillar Inc., “advocacy” was also part of the couple’s to-do list. Possessing a passion for public speaking, Cheryl was eager to become a stronger voice for her son, Lance, and others with intellectual and developmental disabilities (IDD).
“When I worked full time, I didn’t have the time and energy to advocate like I wanted to,” she said.
In the 20 years since her retirement, Cheryl is making up for lost time through her involvement as a member of Autism organizations and advocacy groups, including Mosaic Allied Voices.
“I get a great deal of satisfaction from doing it,” the Peoria, Illinois resident said of her participation in community events, meetings and educational programs. “I’m not afraid of public speaking. I did a lot of it when I was working at Caterpillar.”
Cheryl and Dan are also ready and willing to send a letter, email, or better yet, meet in person with their local, state and federal representatives to share Lance’s story and advocate for the services he receives. As the person who “brought him into this world,” Cheryl said she enjoys speaking out on her son’s behalf.
With possible changes to Medicaid coverage being discussed by Congress, Cheryl and Dan have joined Mosaic’s effort to preserve the program. Their efforts included meeting with U.S. Rep. Darin LaHood and attending a press conference given by Illinois Gov. JB Pritzker.
Nearly 6 million people in the U.S. rely on Medicaid Long Term Services and Supports. Of those, 4 million receive home- and community-based services (HCBS), which enable people to live in their community, rather than moving to a facility for care. At Mosaic, more than 4,500 people with IDD and other diverse needs receive HCBS, including Cheryl and Dan’s son Lance.
Cheryl said Lance, 49, is thriving thanks to the care he receives through the Mosaic at Home program. She said in the five years he has been receiving care at a host home in Rockford, Illinois, his Home Provider and a housemate have become family and they enjoy volunteering and exploring the area.
“Lance is the happiest when he’s the busiest,” Cheryl said. “He loves to go to places. He’s very enthusiastic about that.”
Over the years, Lance’s care has included residential school and group home settings. He lived at home until he was 15, but Cheryl said she and Dan realized their son needed more assistance than they and the local school district could provide.
“We were fortunate to get him into a residential school in Wichita, Kansas,” Cheryl said. “That really helped him develop and he did really well out there.”
When he finished high school, he began living at a group home in Rockford. He also attended a day service program until the COVID-19 pandemic temporarily shut down services. When the program reopened, Cheryl said Lance didn’t want to go back, so they looked for other options and found the Mosaic at Home program and a familiar face to provide care.
“His Home Provider used to be the manager of their group home, so she knew Lance and his other housemate before taking them into her home,” Cheryl said.
Cheryl said she and Dan are seeing improvements in Lance’s reading and language skills, which she credits to the activities and personalized services he receives and his interactions with a housemate. She hopes the progress he has and continues to make will allow him to work, which has been challenging up to this point.
With her son’s care in good hands, Cheryl continues to focus on sharing why Medicaid coverage is vital to his future. Her involvement with Mosaic Allied Voices has led to more opportunities to share Lance’s story. She’s also gained new friendships with people who share her passion for advocacy.
Although the U.S. House passed a sweeping budget bill that includes nearly $1 trillion in cuts to Medicaid, advocacy efforts like Cheryl and Dan’s made a difference in keeping catastrophic proposals related to block grants, per capita caps and a change in the federal match out of the final budget.
Thankful for the opportunity to speak to as many people as she could, Cheryl believes the representatives and staff that she met with were responsive to her concerns about Lance’s living situation and his services being affected. For Lance, Medicaid cuts or changes could require him to move to a state institution, a change Cheryl believes would stall the progress he has made.
“We aren’t in a position to take him back into our home,” she said. “I don’t know what will happen.”
As Mosaic continues to process the impacts of the budget, the commitment to love and serve all people remains.
While Cheryl understands that not everyone is as comfortable with public speaking as she is, she encourages others to get involved in their own way.
“Join Mosaic Allied Voices or get connected with your local Mosaic office,” she said. “Find what works for you and ask for help, if needed. We can and should speak up.”
Mom of Four Says Medicaid is Necessary to Afford Son’s Feeding Supplies: ‘My Son Didn’t Ask to be This Way’
It was heartbreaking for Lori Ann to hear her beloved son say, “If I weren’t here, you wouldn’t have to worry.”
Although her son, Alex, 32, has multiple disabilities, Lori said he understands much of what’s going on around him. Because she has concerns about ongoing Medicaid funding, she tries to conserve the medical supplies he needs every day for his G-tube feeding, which cost more than $3,350 each month. Sensing her concern prompted his shattering statement.
Lori is not only her son’s Home Provider through Living Innovations, a service of Mosaic in Maine, she is also a nurse practitioner who works with palliative patients. She said she worries about the Medicaid funding her son’s services depend on and the Medicaid funding for patients she serves. She’s already seen the results of funding uncertainty with a patient having gone to pick up a prescription only to learn it is no longer funded–and the person cannot afford it.
Alex started benefiting from Medicaid and other services for people with disabilities when he was quite young.
“He was born a pretty sick baby,” she said. “He has always needed some kind of nursing care.”
As a single parent raising four children, Lori knows she could not have provided the care he needed without assistance. At two-and-a-half, Alex started in a child development program, and he later benefited from the assistance the school district provided.
“Alex would not be at his level if he didn’t have those supports early on,” she said. “He struggled through school, grammar and middle, but did great in high school. He had all of those wonderful supports at the time.” Those supports are provided through a mix of local, state and federal funding in the United States.
As her children aged, she went back to school, first to become a nurse’s aide, then eventually a nurse practitioner. It became essential, because of the increased care needs when he could no longer take anything in by mouth which followed swallowing troubles when he was 21.
“I needed to become a nurse practitioner to manage his G-tube,” she said. “The G-tube needs to be changed regularly. I thought I might as well get the degree and take care of all his needs at home.”
Alex does understand a lot, she said, but he has multiple diagnoses. In addition to an intellectual disability, he takes psychiatric medication to help with severe depression, is sometimes suicidal, has adjustment disorder and autism.
“He is able to do most of his own care,” she said. “He’s capable, but when things go wrong–if he has a cold, if he doesn’t feel good, if he has mental health issues–everything stops. He completely shuts down and needs cueing to get through the moment. Everyday has to be the same. If something changes that, he can become unable to function.”
Home support staff come in daily to administer Alex’s afternoon medications and take him out into the community while Lori works. He can be on his own for up to eight hours a day, if needed.
“I am very fortunate that we have the support system that we need, especially since my other children are all out of state,” she said.
Lori’s and Alex’s story shows the challenges families who benefit from Medicaid face. The choice becomes whether you work to support yourself and your family’s needs with the assistance of Medicaid or not work, live in near poverty and take care of your loved one as best you are able with what little you have.
“If I had to pay $3,350 a month for him to get the nutrition he needs, I can’t afford that. I don’t know who can.
“My son didn’t ask to be this way. If my son could have a life like my other son who will soon get married, he would want that.”
Iowa Home Providers Share How Medicaid Has Improved Lives, What's at Stake Without It
Robyn Agu is ready and willing to share her first-hand experience about how Medicaid funding is changing lives, even if it means pausing a family walk around her Altoona, Iowa neighborhood to visit with friends and acquaintances.
With crucial decisions regarding Medicaid funding being discussed in Washington, D.C, Robyn and other Home Providers made sure that their Congressional representatives, friends and neighbors saw the faces and heard the names of people who rely on services made possible through Medicaid.
People like Deannalue Bales and Patrick “Ricky” Flatjord, whom Robyn and her husband, Abraham, care for as Mosaic at Home® Shared Living Home Providers.
Deannalue and Ricky are among 4 million people in the U.S., and more than 4,500 at Mosaic, who receive home- and community-based services (HCBS) through Medicaid. HCBS enables people to receive personalized care in their community, rather than an institutional setting.
Robyn said her neighborhood conversations have been eye-opening. She said her neighbors are often surprised to learn that people with intellectual and developmental disabilities—like Deannalue and Ricky—would likely be impacted if Medicaid funding is reduced, leading Robyn to realize more education is needed.
“It’s really important for people to see who we’re talking about," Robyn said, adding that once her neighbors learn that Deannalue and Ricky’s care is funded by Medicaid they are supportive.
Beyond the neighborhood, Robyn’s advocacy efforts led her to Washington, D.C. this past spring with the Progress Iowa group. U.S. Rep. Zach Nunn was among the lawmakers the group addressed.
After the trip to Washington, D.C., Robyn and Deannalue visited Rep. Nunn at his Des Moines office twice to deliver an Easter basket and birthday balloons before securing an in-person meeting with them and Mosaic Iowa Operations Director Brandi Bretthauer.
During the meeting, Rep. Nunn presented Deannalue with a challenge coin while Robyn shared the different levels of care Deannalue and Ricky receive and the critical need for Medicaid. They also invited him to visit their home for a firsthand look at the benefits of at-home care.
Robyn, a former case manager who also worked as a nurse for Mosaic in Des Moines from 2004 to 2007, believes the proposed changes to Medicaid will affect the entire healthcare system, including people with private insurance and already-struggling rural hospitals.
“As a case manager, I saw how limited services were already across the state,” she said. “If we have fewer funds and fewer people able to use them, the resources we do have are going to dry up even more.”
Personally, she’s concerned about disruptions in Deannalue and Ricky’s services that could affect their daily medications, doctor’s care and possibly change their living situation. With tears in her eyes, Robyn said she can’t imagine the pair thriving in a state institution setting.
“Deannalue would go rapidly downhill,” she said. “Same with Ricky. To think he would be back where people don’t know him and don’t know what he wants and likes or what he’s trying to say, is extremely upsetting.”
At 61 years old, Deannalue has experienced a range of care services since leaving her parents’ home in her early 20s. She first lived in a 15-person group home and later in an apartment with a roommate before moving back to a group home. While living in the group home, Deannalue, the youngest of five children, longed to be part of a family again. So when she heard about the Mosaic at Home program, she wanted to try it out.
Robyn and Abraham, who met as case workers 27 years ago and later worked in a group home together, and their three daughters welcomed Deannalue into their home five years ago.
“What she told me is she was happy when she lived with her family and she wanted to be where there was a mom, dad and others in the house,” Robyn said.
Ricky’s arrival nearly three-and-a-half years ago fulfilled another wish for Deannalue.
“I wanted to be part of a family of seven, just like mine,” she said.
Robyn and Deannalue agree that Ricky is “a perfect match” for the family.
Ricky also lived in a group home after spending his youth with a foster family. The Agu’s desire to care for Ricky came after Abraham retired from his job at the height of the COVID-19 pandemic to protect Deannalue from the virus.
Robyn said she’s seen positive growth in Ricky and Deannalue.
“One of Ricky’s goals is to be involved in making choices for himself,” Robyn said. “He might choose between what shirts he’s going to wear when I ask him.”
He also likes to be part of the group, which wasn’t the case when he first arrived.
“We have a group of Home Providers that we get together with for birthday parties, movies and crafts,” Robyn said. “He might not sit and do the craft, but he wants to be at the table.”
Living in the family setting she desired, and with the help of Robyn’s extended family, Deannalue has learned how to control her emotions and be flexible if her daily schedule needs altering. She’s also a big help with Ricky.
“Being a part of something makes her feel good,” Robyn said.
Ricky and Deannalue aren’t the only ones to experience positive outcomes from the host-home setting.
“We’ve had so much growth as a family,” Robyn said. “Our daughters have more gratitude because they see the challenges Ricky and Deannalue have. It has shaped their outlook tremendously.”
Robyn isn’t letting Medicaid funding’s uncertain future deter her family’s path or the care they provide to Ricky and Deannalue.
“I’ll continue being a voice for them and sharing how effective this program has been for us,” she said.
Whether you’re a parent, a community member, a volunteer or a person who receives services, you can make a difference as an advocate. Mosaic and Living Innovations knows that Medicaid makes a difference. Now is the time to speak up. Visit mosaicalliedvoices.org to see how easy it is to lend your voice.