Jennifer and Casey Simmons live in a tiny unincorporated community in Pulaski County called Devils Elbow. When their son Hunter was born with severe cerebral palsy and epilepsy, it was recommended to them that they get a divorce so they could qualify for Medicaid benefits. They didn’t.
They spoke about how insurmountable medical costs can seem and about the importance of advocating for your loved ones with disabilities.
Kelley Thorson lives in Pulaski County with her husband, Donald, and their three sons. I have known Kelley for years, as my Dad was her son Kyle’s teacher.
Her youngest son Kyle has a very rare, severe disability called Phelan-McDermid Syndrome. According to the Phelan-McDermid Syndrome Foundation, there are at least 1,400 cases worldwide.
Kyle is now a fully-grown, 24-year-old man and is also non-verbal, so Kelley spoke with me about the anxiety she is experiencing now that Kyle has reached adulthood.
Madi Lawson and Taylor Kinnerup are best friends who attend the University of Missouri Journalism School together.
Madi was diagnosed with spinal muscular atrophy as a child, and then another rare form of muscular dystrophy year this. These two spoke about the future, their friendship and how it's changing following this most recent diagnosis.
Susie McGee and Bev Borgeson both work for Audrain Developmental Disability Services. Susie works as the Community RN proving nursing care, and Bev is the Quality Assurance Coordinator, but according to Susie, Bev wears “many hats.”
They spoke about how the needs of the people they work with, who they call “consumers,” are changing.
Darrell Watts and his sister Lisa Harrison both live in Audrain County. Darrell was born with cerebral palsy and is legally blind. Lisa is her brother’s guardian and also a Residential House Coordinator for Audrain Development Disability Services - where she works with other people with disabilities on a daily basis.
They spoke about how Darrell owning his own home has caused some healthcare struggles over the past few years.
Carolyn Lewis lives in Audrain County, Missouri. She has worked for a man in Audrain County for ten years through the Missouri Department of Mental Health’s Self-Directed Supports program.
She spoke with her cousin, Sheila Artis, about some of the struggles she has faced while working with this program – like lack of benefits and raises throughout the years.
The man she works for also received a letter in the mail earlier this month letting them know that, following state budget restrictions, the program’s individual budget allocations had been adjusted to reflect a 2.82 percent budget cut.
Carolyn also spoke about her fears going forward – for herself, her employer and this program - as future Missouri budget cuts loom.
Max Lewis is a lawyer in Columbia. He's also quadriplegic and uses a program called Consumer Directed Services to hire in-home help with personal care. He sat down with Leslie Anderson, the director of policy and advocacy for Services for Independent Living.
They spoke about a significant change Missouri is likely making in how it supports people who need assistance to stay in their homes. In the past, if you were on Medicaid, the state would pay for someone to help an elderly or disabled person with personal care up to the cost to live in a nursing home.
Starting July 1, though, the state will only pay up to 60 percent of what it would cost to live in a nursing home. There are a very limited amount of waivers that would allow people to keep their full care, but these make up for a tiny fraction of the estimated 8,800 Missourians who need this kind of care.
For the rest, these changes may mean getting fewer hours of assistance or ending up in a nursing home.
Columbia resident Rene Powell spoke with her friend Traci Wilson-Kleekamp about what life has been like with a disability. They also spoke about how life has changed for Rene as her disabilities have become more visible - as she started using a walker recently to assist with her mobility.
Brothers Chuck and Drew Graham live in Columbia, Missouri, and both have been paralyzed for many years.They spoke about their issues with physical access in the Columbia community and about some of the tough decisions they are forced to make.
Chuck and Drew Graham's mother served as their role model growing up in Louisiana, Missouri. She helped them face the road ahead after they became paraplegic and quadriplegic within a year and a half of each other in their teenage years.
Copyright 2017 KBIA and The University of Missouri. Development and Design by Nathan Lawrence.