The Personal Stories of Those Affected by Kentucky’s Sec. 1115 Medicaid Waivers

Executive Summary

National Health Law Program Managing Attorney of the D.C. office Mara Youdelman details how Kentucky’s Sec. 1115 Medicaid waivers program is harming the lives of the plaintiffs in the federal lawsuit challenging HHS’s approval of the radical Medicaid waiver project, which includes an onerous work requirement and cuts to benefits, including retroactive eligibility.

On January 12, 2018 the Department of Health and Human Services (HHS) approved numerous Section 1115 waivers in Kentucky (KY Waivers). Because the approvals violate numerous provisions of law and will gravely harm hundreds of thousands of Kentuckians, the National Health Law Program brought a lawsuit challenging them on August 14, 2018.[1]

The lawsuit was filed on behalf of nine individuals who currently obtain their health care through Medicaid and will suffer serious harms under the KY Waivers. They face monthly work requirements and lose coverage if they fail to meet certain administrative requirements. The waiver also eliminates retroactive coverage. Below are descriptions of how the KY Waivers will affect the named plaintiffs:


  • Ronnie Maurice Stewart is a 62-year-old man who suffers from diabetes, arthritis, and high-blood pressure. He lives below the poverty level. Mr. Stewart is a college graduate who worked in mental health clinics in North Carolina for many years. He was laid off in his fifties and could not find work. Mr. Stewart moved to Kentucky in 2014 when he was offered a job. After losing that job, Mr. Stewart was homeless for about six months, until he got a job as a medical assistant at a hospital. Because of his age and health, he is no longer able to do heavy work that would require standing on his feet all day. He is concerned that he will lose his health coverage if he is unable to work because of his health or if he takes a job with varying work hours.


  • Glassie Mae Kasey is a 56-year-old high school graduate, who attended community college but was not able to finish her schooling because she needed to work to support herself. Ms. Kasey has worked her whole adult life in various jobs, including as a disc jockey, a radio broadcaster, and as a caregiver or housekeeper in private homes and nursing homes. Until mid-September 2017, Ms. Kasey worked as a custodian cleaning offices, hallways, and bathrooms. She had to lift and carry heavy containers and ultimately hurt her shoulder. After she requested an accommodation, she lost her job. She has been trying to find a job, without luck. She cannot afford a car, so her options for searching for work are limited. Ms. Kasey has a number of medical conditions for which she receives treatment covered through Medicaid. These include diabetes; calluses on and numbness in her feet, hands, and right arm; arthritis in her hands; chronic pain in her calf muscles and upper legs; high blood pressure; high cholesterol; urinary problems; chronic chest congestion; and leg, foot, and back pain. She had kidney stones twice in the last year.


  • Lakin Branham is a 20-year-old woman who lives with her grandparents. Ms. Branham’s grandfather has terminal cancer, and she helps care for him. Ms. Branham also helps with housework (e.g., cleaning, cooking) and yardwork. Most days of the week, Ms. Branham’s grandfather, grandmother, great grandmother, or great aunt have a doctor’s appointment or need to go to the store to get household items. Ms. Branham’s grandmother drives them, and Ms. Branham goes along to help her relatives move from place to place. She babysits her five-year-old sister three days a week. Ms. Branham is looking for a job outside the home, though without a license to drive and no public transportation available, the prospects are difficult. She is primarily focused on her sobriety and is in recovery from addiction, primarily to methamphetamines. Ms. Branham attends substance abuse counseling and church as often as she can. Her entire substance abuse treatment has been covered through Kentucky’s Medicaid program as well as receiving care for other medical conditions requiring ongoing treatment. Ms. Branham hopes to become a substance abuse counselor.


  • The Ballinger family is comprised of 27-year-old Shanna, her husband Matt, and their two sons, aged three and two. Mrs. Ballinger first enrolled in Medicaid in 2015 when she was pregnant. Mrs. Ballinger has a college degree and previously worked in the human resources command for the army. In August 2017, she enrolled as a full-time law student and just started her second semester of law school. Mrs. Ballinger does not currently have any income. She took out a student loan to pay for childcare, books, and other school-related expenses. Her husband Matt works full time roughly 35 to 37 hours per week in a national chain’s craft store and is a part-time community college student. During the holidays, his hours increase slightly, but never exceed 40 hours per week. The Ballingers will be required to report any fluctuation of income affecting eligibility within ten days, which might be difficult since Mr. Ballinger’s hours vary every week. They would lose their Medicaid and be locked out of the program if they do not timely report an increase in income that would affect their eligibility. Mrs. Ballinger has a number of medical conditions for which she receives treatment. She has postural orthostatic tachycardia syndrome (“POTS”), a condition that causes her heart rate to increase rapidly, sometimes leading her to pass out. Medicaid covers her treatment, including the help of a cardiologist and her primary care physician. Mrs. Ballinger also experiences depression and anxiety and manages these conditions with medication and with the help of physicians, including a psychiatrist.


  • Dave Kobersmith is a 57-year-old man who lives with his wife, Kimberly, and their two sons, ages 13 and 11. Mr. and Mrs. Kobersmith both work part-time, so that they can jointly home school and care for their sons. Mr. Kobersmith works as an administrator at a church, 20 hours per week providing support to the pastors and managing church finances, property and personnel. Mrs. Kobersmith is a freelance writer who has written articles for local newspapers and magazines. Currently, she works about 10 to 12 hours each week although her hours and income fluctuate substantially throughout the year. Mr. and Mrs. Kobersmith and their younger son all wear glasses. Their children get well-child check-ups and dental and vision check-ups. Having affordable health care through Medicaid has allowed Mr. and Mrs. Kobersmith to focus on home schooling and spending more quality time with their children.


  • William Bennett is a 47-year-old divorced man. He has a 21-year-old son, who splits his time between Mr. Bennett and his ex-wife. His son has ADHD and is unable to work. He also has two younger children, aged 13 and 14, who are in foster care. Mr. Bennett completed a one-year embalming school program and also has a two-year degree in ministry. Mr. Bennett has two part-time jobs – director and mortician at a funeral home and minister at a Baptist church. His income varies widely from $100 to $1,000 per month, depending on the number of funerals. He also volunteers five to eight hours per week. Mr. Bennett has a number of medical problems, including diabetes, high blood pressure, high cholesterol, chronic obstructive pulmonary disease, and hemorrhoids. In addition, he has serious eye problems – no vision in one eye due to injury earlier in life, cataracts in both eyes, and glaucoma. He is unable to drive due to his limited vision and is worried that he might go blind. His doctors have referred him to be evaluated for surgery. Prior to Mr. Bennett’s enrollment in Medicaid, he had to go to the emergency room for treatment and to the health department to try to get prescriptions filled. Often, he would go without his medicine for long periods of time. Medicaid coverage is essential to his ability to manage his health problems and keep working.


  • Shawna Nicole McComas is a 34-year-old woman who lives with her husband and four children, ages 16, 13, 9, and 4. Mrs. McComas generally works 40 or more hours per week in a housekeeping position at a hospital. Her monthly income varies depending on how many hours she works and whether she has worked overtime as her work hours vary from week to week and month to month. Mrs. McComas’s husband, Jeremiah, suffers from posttraumatic stress disorder that makes it difficult for him to keep a job. Mrs. McComas has a number of medical conditions for which she receives treatment, including chronic hip pain, congenital hip dysplasia, osteoarthritis in her hips, chronic back pain, a bunion on her foot due to her hip problems, and sciatic nerve damage.


  • Alexa Hatcher is 29-years-old and a full-time student in her final semester of college. Ms. Hatcher works a part-time job in a campus food pantry, about 10 hours per week. To meet her living expenses, Ms. Hatcher has taken out over $50,000 in student loans. Ms. Hatcher lives with endometriosis and takes medication for the condition, as well as for depression, anxiety, and severe allergies. Ms. Hatcher had surgery for her endometriosis and uterine polyps in December 2017. Post-surgery, Ms. Hatcher must maintain a medication regimen to prevent a recurrence of these conditions. Without Medicaid, she could not have afforded the surgery or medications, and treatment for her chronic conditions would end because she has no other means to pay for it. Ms. Hatcher’s working hours and income fluctuate throughout the year. She is concerned that she will be locked out of Medicaid coverage if she does not file the required reports informing the State about these changes. Ms. Hatcher also is concerned she will be unable to timely re-enroll each year, will be kicked off Medicaid, and as a result, will not get needed care or will incur medical debts when she does seek care.


  • Michael “Popjaw” Woods and Sara Woods are 52 years old and 40 years old, respectively, and have three children, ages 15, 16 and 21, who do not live in the home. Their 21-year-old daughter, Beka, had a baby in December 2017. Mrs. Woods is providing childcare for her granddaughter as well as for a neighbor’s child. Last year, Mr. Woods opened Martin Service Center, a service station that offers oil changes and basic car repairs. Mr. Woods’ income varies dramatically from week-to-week based on business. Mrs. Woods is a cleaning specialist with clients including local homeowners, a local pawn shop, and her husband’s service center. Mrs. Woods’s hours and income fluctuate substantially throughout the year. With Medicaid coverage, Mrs. Woods was able to get treatment for a substance use disorder. She has been able to stay sober for nearly three years with the help of prescription medication covered by Medicaid. Mrs. Woods believes she would have died from an overdose by now if she had not gotten on Medicaid. She also previously suffered from debilitating migraines and low blood sugar. Medicaid has helped her to get these conditions under control. With Medicaid coverage, Mr. Woods takes blood pressure medication, treating a long untreated condition.


  • Kimberly Withers is a 47-year-old woman who resides with her husband and two children, ages 18 and 20. Mrs. Withers has worked various jobs all her life, including at gas stations, hotels, fast food restaurants, Wal-Mart, and as a custodian. Mrs. Withers has worked as a housekeeper for the past seven and a half years. The family does not have a car, and Mr. Withers has had difficulty finding a job that does not require him to drive to another county. Most recently, he worked for a large package delivery company but could not afford the gas to commute to work. Mrs. Withers’ daughter, age 20, has a learning disability and has been unable to find a job (she is supposed to have a medical review for disability). Mrs. Withers’ son, who is 18 years old and still in high school, works part-time (because he is still in high school, his income is excluded for purposes of Medicaid eligibility). Mrs. Withers has rheumatoid arthritis in her hands, shoulders, hips, and lower spine. She has been told that her disks are slowly shrinking. She is in constant pain when she is standing and has a lot of pain by the end of her workday. Mrs. Withers sees her doctor every two months and has had occupational therapy. Mr. Withers has consistent back pain and curvature of the spine.


  • Katelyn Allen is a 27-year-old woman who lives with her husband Gary and their eight- and six-year-old children. Her 18-year-old brother lives with them part-time. Mrs. Allen recently started working as a bank teller. She has previously worked for the State collecting samples for drug testing, in a rubber factory, at another drug lab, at a fast-food restaurant, and at a hospital doing patient registration. She also breeds dogs once a year, which earns her about $150. Mr. Allen works delivering pizza 20 hours a week and earns minimum wage plus tips. He also has worked in a drug testing lab. Prior to having Medicaid, Mrs. Allen went without medical care due to cost and accumulated debt from obtaining care when absolutely necessary. Because of her current coverage, the Allens were able to seek emergency care after a car accident in January 2017 in which Mr. Allen suffered a slipped disk and nerve damage. Mrs. Allen also credits Medicaid with making it possible to keep her children healthy and to take them to the doctor when they are sick. She would not be able to afford any doctor or dentist visits for them without the coverage. Mrs. Allen fears that without this coverage she would have to choose between caring for a sick child or paying essential bills.


  • Amanda Spears is a 33-year-old married woman with no children who is separated from her wife and is currently living with her parents. Ms. Spears was previously approved for Social Security disability, but those benefits terminated when she tried to go back to work. She recently reapplied for these benefits. Ms. Spears has worked for the Internal Revenue Service, at an environmental research institute, as a sanitation department communications specialist, and for a financial investment company. She was forced to quit most of these jobs due to her health. Most recently, she and her wife ran a company making t-shirts, cups, and other merchandise. Ms. Spears was unable to continue working and is currently not working due to health problems. She has no income, and her parents are paying all of her expenses, including her medications, which cost $300-$400 per month. Ms. Spears was born with hypokalemic periodic paralysis, a rare genetic disorder that manifests as attacks of muscle weakness and short term cognitive problems. She also suffers from postural orthostatic tachycardia syndrome and was born with spina bifida. She has had Lyme disease for 12 years and has developed multiple chemical sensitivities. Medicaid is absolutely essential to Ms. Spears’ health for ongoing treatment but also because she sometimes ends up in the emergency room due to anaphylactic shocks, seizures, or tachycardia episodes.


  • David Roode is a 39-year-old man who lives with his wife. Mr. Roode is self-employed as a classical musician and plays with various symphony orchestras, usually on a contract basis. Because he is a self-employed contractor, Mr. Roode’s income varies each month, and he often has to pay his own Medicare and Social Security taxes, in addition to income taxes. With Medicaid, Mr. Roode has been able to get preventive care – including an annual check-up and flu shot. Preventing illness is very important to him because of his busy schedule and contract status since it is very important not to miss performances. Medicaid coverage is essential to Mr. Roode’s ability to stay healthy and keep working as much as possible. Without Medicaid, he would be forced to give up his music career and try to find a job that offers health insurance.


  • Sheila Marlene Penney is a 54-year-old woman who has worked her whole adult life as much as possible including as a package handler, boat reservations manager, and as a kynector/assister for Medicaid enrollment. She has also worked with victims of domestic violence and in a county drug court. Ms. Penney has not worked since March 2016 due to depression and anxiety. She has had these conditions for 30 years. She also has sleep apnea and allergies. Prior to enrolling in Medicaid, Ms. Penney had trouble getting health care. She had to piece together treatment for her depression and anxiety through visits to a sliding fee scale family health clinic. Sometimes, she could get prescriptions filled through a free pharmaceutical plan. She was unable to pay out-of-pocket expenses for therapy and other needed treatment. Having Medicaid has allowed Ms. Penney to obtain consistent treatment to keep these conditions under control. She is now able to look for work but, so far, has not found a job. Without Medicaid, Ms. Penney does not believe she would be able to work at all.


  • Quenton Radford is a 20-year-old man who lives with his 16-year-old brother and his grandmother, who has multiple sclerosis. Mr. Radford solely cares for his grandmother. Mr. Radford helps her in and out of bed, cooks, does laundry, and cleans the house, spending about three hours each day caring for her. He also babysits his cousins for free, and volunteers at the church food pantry a few hours each month. Mr. Radford does not have a regular job but does odd jobs for family members and occasional paid jobs at his church. He was last employed at age sixteen on a temporary basis at a sandwich shop. He occasionally housesits for family members. Mr. Radford has been looking for work but without success as there are limited employment opportunities where he lives. He does not have a car, so he walks or bikes where he needs to go. Having health insurance coverage through Medicaid is fundamental to Mr. Radford going for check-ups and when he gets sick.

In addition to these individuals, the KY Waivers will harm tens of thousands of Kentuckians across the state including parents grandparents, caregivers, home health aides and childcare workers, housekeepers and custodians, ministers and morticians, car repairmen, retired workers, students, church administrators, bank tellers, and more. All of these individuals need primary, preventive and potentially emergency care including check-ups, diabetes treatment, mental health services, blood pressure monitoring and treatment, and vision and dental services. The KY Waivers will mean the loss of coverage for tens of thousands, resulting in both poorer health and economic status for themselves, their families, and their communities.

[1] For more information on the lawsuit see National Health Law Program, Summary of Lawsuit Filed Against HHS Approval of Kentucky Waivers. The National Health Law Program brought the lawsuit together with the and the Southern Poverty Law Center. National Law Health Law Programs is being assisted by the law firm of Jenner & Block.


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