Disability

Lydia Olmstead and Dr. Jacque Sample work together on the Columbia Disabilities Commission. Lydia is a person who happens to be deaf/blind, and Dr. Sample has a son with a disability.

They spoke about Columbia’s sidewalks and about improvements that would make the community more inclusive – and perhaps even more environmentally friendly.

This piece was reported by Becca Newton.

Amie VanMorlan lives and works in Columbia. She’s the incoming President of the local SEPTA, or special education PTA, a pediatric endocrinologist and the mom of Sagan and Damien.

Sagan is an upcoming senior, and Damien is an almost 7th grader who has Fragile X syndrome. This condition can lead to intellectual disabilities and autism, and is the leading inherited cause of intellectual disability.

Amie spoke about some of the ways Damien and rest of the family are adjusting to the world of COVID-19.

Dr. Opeoluwa Sotonwa is the executive director of the Missouri Commission for the Deaf & Hard of Hearing in Jefferson City.

He spoke about the importance of accessible communication for Deaf and Hard of Hearing Missourians and about some recent advances – like the availability of clear masks and American Sign Language interpreters at Governor Mike Parson’s COVID-19 briefings – and how those have impacted the lives and well-being of all Missourians during the ongoing coronavirus pandemic.

You are hearing Dr. Opeoluwa Sotonwa as interpreted by AJ Housewright.

Deanna Terrien and Wanda Kelley are sisters who live in Jackson, Missouri. Several years ago, Deanna was diagnosed with Lyme disease.

They spoke about some of the different ways the disease has impacted her body, and about how exhausting it was to get a diagnosis in the first place.

This piece was reported and produced by Olivia Love.

Tagnan and Michelle Ribaudo are a mother and son in Columbia. Tagnan is currently in high school and also has high functioning autism.

They spoke about some of the struggles Michelle faced when trying to get Tagnan diagnosed with autism as a child.

Tagnan and Michelle Ribaudo are a mother and son in Columbia. Tagnan is currently in high school and also has high functioning autism. This past spring he spoke to Missouri state legislators about the importance of therapies for people with disabilities.

They shared some of their memories of therapy and about how these therapies have impacted both their lives.

Christina Ingoglia and Michelle Ribaudo are both board members for the Missouri Disability Empowerment Foundation, or MoDE Foundation, in Columbia. Christina is the current President and Michelle is the current Vice President of this organization that works to advocate for people with disabilities and promote inclusion.

They spoke about the use of restraint and seclusion rooms for students with special needs and about the potentially dangerous ramifications of such policies.

For the past few weeks, these policies and their usage on members of the diverse Columbia Public Schools student body has been a passionate topic of conversation. Local advocacy group "Race Matters, Friends" posted photos online of very small rooms designed to isolate students with Individualized education plans, or IEPs, when they may be a danger to themselves or others.

After a five-hour Board of Education meeting in early September, the School Board is now reconsidering the use of these rooms.

Christina Ingoglia and Michelle Ribaudo are both board members for the Missouri Disability Empowerment Foundation, or MoDE Foundation, in Columbia. Christina is the current President and Michelle is the current Vice President of the organization, which works to advocate for people with disabilities and promote inclusion.

They spoke about one of the ways their organization is working to make Columbia and the greater community a little more accessible – through their online bathroom accessibility map.

Robyn Schelp and Molly Myers are both moms of children with intellectual and developmental disabilities here in Columbia.

Robyn has three sons, and her 11-year-old has an unknown genetic disorder. Molly has an 8-year-old son who is missing a part of his brain, twin girls who were born prematurely and another three-year-old daughter.

They spoke about what it’s like to care for a loved one who has a disability in today’s “Supermom” culture, and about how they have built their own support systems.

Robyn Schelp and Molly Myers are both moms of children with intellectual and developmental disabilities here in Columbia.

Robyn has three sons, and her 11-year-old has an unknown genetic disorder. Molly has an 8-year-old son who is missing a part of his brain, twin girls who were born prematurely and another three-year-old daughter.

They spoke about their ongoing fight to get their children the therapies they need because, in Missouri, legislation only requires insurance companies to cover diagnosis and treatment for people with autism spectrum disorders.

DeAnna Quietwater Noriega and Gretchen Maune, who’s a friend of mine, both live in Columbia and are blind.

They recently spoke about some of their health conditions that exist separately from their blindness and about some of the additional barriers they come up against in the health care system as a result of their blindness.

DeAnna Quietwater Noriega and Gretchen Maune, who’s a friend of mine, both live in Columbia and are blind.

They spoke about some of the additional complications and costs that can come along with their adaptive technologies – i.e. their service dogs. For DeAnna, that’s Enzo, a German Shepard, and for Gretchen, Keeper, a Golden Retriever.

Gretchen Maune and DeAnna Quietwater Noriega are friends who live here in Columbia, and Gretchen’s actually been a friend of mine for several years.

Gretchen and Deanna are both blind, and they spoke about the first time they met – now many years ago - at a support group.

Lonnie Kessler and Kimberly Ruiz are a couple that lives in Moberly. Lonnie has intractable epilepsy and Kimberly is a disabled vet - and they both advocate for the legalization of medical marijuana in the state.

They sat down at the Little Dixie Regional Library in Moberly, and spoke about their relationship and about how both of them having disabilities has influenced and strengthened their relationship.

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.

Casey and Jennifer Simmons live in Devil’s Elbow, a tiny unincorporated town in Pulaski County. Their son Hunter has severe cerebral palsy and epilepsy and full disclosure – he goes to a school where my Dad was previously a teacher and the principal.

They shared their favorite Hunter stories and spoke about why you should never let others put limits on what your child can accomplish.

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.

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.