Press Documents
Choice Centered Medicaid (CCM) Backgrounder
From Inspiration to Implementation: The Dora & Joe Stango Story
In 1999, Joe Stango built a home in Connecticut to accommodate his wife, two children, his mother Dora, and his wife’s mother, Alba. Dora suffered from spinal stenosis and Alba from multiple sclerosis.
The plan was for Stango’s family to enjoy the time their mothers had left, all living together as a family in the Southbury house…the women growing old surrounded by family.
Instead, Stango’s mother spent the last four years of her life in a nursing home, and was only brought home after a long battle with Medicaid. She died six days later.
One day in 2003, Stango picked his mother up in the van he’d had especially equipped to transport her and her wheel chair around the community. Suddenly, she sank to the ground; she couldn’t stand up. Stango was later told she would never walk again, and advised to put her in a nursing home.
A middle class American, Dora was a former factory worker who had spent her middle years taking care of her husband and children. Because of her failing health, she had exhausted her savings on healthcare.
Like so many Americans, Stango was unaware that there were other options for his mother besides institutionalization. Dora desperately required care, but in the end, she became so ill that Medicaid would only provide for her if she were in an institutional setting.
Dora’s physical disability had grown beyond Stango’s ability to provide for his mother privately. And the Medicaid rules were clear: the program would not cover Dora’s expenses unless she was in a nursing home.
Stango decided to go to the legislature to try to change Medicaid law. He was told all the usual rhetoric: no one could fight city hall, he was wasting his time, and so on. But Stango was undeterred by this defeatist attitude. He took his mother to Connecticut’s capital city, Hartford seeking support from the media; they had discussions with anyone who would listen. The media attention made people stand up and take notice; Stango received 29,000 letters, emails, and phone calls supporting his cause.
In 2006, to bring his mother home, he advocated for the Connecticut legislature to pass a Medicaid portability program called Money Follows the Person (MFP). At the time, the program would allow people currently residing in nursing homes for at least six months the opportunity to return home and be cared for in the community, while continuing to receive Medicaid services. MFP was passed with one hundred percent support among both democratic and republican lawmakers. Governor Rell signed the MFP bill in June of 2006.
CBS News and The New York Times provided coverage as Stango worked tirelessly throughout the legislative process in order to bring MFP to Connecticut.
But the MFP program didn’t get underway until 2008. In 2007, Stango was still waiting for permission from Medicaid to bring his mother home. Then one day, Dora began to turn yellow; she was rushed to the hospital and diagnosed with a cancerous tumor. Dora’s physician said she’d had the tumor for over a year, but no one had told Stango and his family. If they had known, they wouldn’t have let her go back into nursing home care.
On December 12, 2008, Stango and his wife made the decision to bring Dora home with or without the state’s help. Six days later, on December 17, Dora died…less than three weeks before the MFP program officially got underway. Dora would have been the first person moved under the new program.
In 2008, after his mother’s death, Stango submitted legislation outlining his formula to convert Medicaid into a choice-centered plan. His legislation was once again supported by both parties, and passed unanimously. Governor Rell signed the legislation in a public ceremony. Choice-centered Medicaid was hailed as an idea whose time had come.
Stango founded Choice Centered Medicaid in 2009, and continues his advocacy nationwide towards equal treatment of institutional and home care, so that Medicaid-eligible consumers are given the choice between the two.
“The MFP formula will transform and reform Medicaid, ending forced institutionalization, and enabling all patients and their families, regardless of age or extent of disability, to have a choice about where they live out their lives,” says Stango. “This would end the greatest injustice put upon us by our own government since the internment of Japanese Americans during World War II.”
