TESTIMONY OF KAREN HIGGINBOTHAM *
FAMILIES USA PRESS CONFERENCE ON MEDICAID
Washington, DC
JUNE 29, 1995

My name is Karen Higginbotham and I reside in Opelousas, Louisiana with my husband, Danny, and our children, Alison who is seven (7) years old and Dustin who is six (6) years old. Thank you for allowing me to speak to you today concerning how Medicaid has helped our family.

My daughter, Alison, who is here with me today, has physical and mental disabilities caused by a rare seizure disorder called infantile spasms. Although Alison is seven (7), she functions like a much younger child. She cannot do nay of her own personal needs -- she cannot feed herself, hold a cup or take a bath. She uses gestures to communicate. She is incontinent and wears diapers. She must be supervised and attended to throughout the day. She has no concept of danger so she must be supervised and attended to throughout the day.

When Alison was born, we had health insurance. After many hospitalizations and doctors visits we learned that even with insurance, health care costs can wipe out a family's finances. Three times I applied for Supplemental Security Income (SSI) and Medicaid, but were denied because of our income and resources. Even after my husband lost his job, we were turned down.

When Alison was three (3), I heard about the Medicaid Community Home Based Waiver that was started in Louisiana. This is a program that helps provide at home care to people with developmental disabilities, rather than the more costly, and unwanted, institutional care. The program also provides respite and other help for the family. I immediately applied for this program.

Several months later, Alison began receiving the services of the Community Home Based Waiver. It was like a godsend! We still had insurance at that time, but now, with Medicaid for Alison, we no longer had all of the out of pocket costs that we had before. Plus we started receiving respite from her care -- which gives parents a break from the constant care of a child with disabilities.

A few months after started receiving Medicaid, I lost my job. I then re-applied for SSI. This time Alison was approved. We started receiving cash assistance for Alison.

Last year my husband lost his job, and along with that our health insurance. Danny found another job a short time later, but since he is considered a part time employee, he is therefore not entitled to any benefits. Even is he could receive benefits, insurance companies do not want to insure a person with a condition like Alison's.

Alison's care and needs run about $30,000 a year, while institutional care averages $60,000 a year in my state of Louisiana. Our choice is and has always been for Alison to be care for at home, where she can receive the love and nurturing that only her family can give. This is what ALL children need and deserve.

Please know that Danny and I do not want to receive Medicaid, SSI or any government help for Alison - we need to. Our family lives modestly and within our means. My husband works hard to support us and to meet our needs. I have a small part time job. Without Medicaid, we could not provide the medical care, therapies, and services that Alison needs -- and which have helped her make so much progress.

I feel that block granting Medicaid to the states can lead to enormous trouble. I dare not think of what will happen in Medicaid is turned over to the states. I am fearful for Alison and for all the other children like her. Will we be forced to place our children in institutions? I shudder to think of that!

It is difficult for me to hear of anyone who is making decisions that will affect Alison and our family without knowing what we need. We, Alison's parents, are the best decision-makers about her needs, for we know her better than anyone!

I think many people fail to realize that we are all just temporarily able-bodied. Any child could have an accident or get sick and suddenly have a debilitating disability or illness. Disabilities have no prejudice of sex, age, race, social status or political affiliation.

Alison is not a burden to us; she has been an inspiration to us. We want Alison to live as normal life as possible; we want her to reach her fullest potential. I often think of the song by Garth Brooks called Standing Outside the Fire. The song says "you're not living, you're merely surviving if you're standing outside the fire". We don't want Alison to just survive, we want her to live!

Thank you for the opportunity to speak to you today.

Note: Karen Higginbotham was a previous name. I now go by Karen Lagrange Coleman.