National Council on Disability
Public Hearing in New Orleans, LA
Meeting the Unique Needs of Children and Youth with Disabilities
from Minority and Rural Communities
Testimony of Karen Higginbotham *
January 26, 1998

My name is Karen Higginbotham and I reside in Opelousas, LA, with my husband Danny, and children Alison, 9 and Dustin, 8. Thank you for inviting me to speak to you today about caring for a child with disabilities in a rural community.

Alison, who is here with me today, has physical and mental disabilities caused by a rare seizure disorder called infantile spasms. Although Alison is nine (9) years old, she functions on the 18 - 24 month old level. She cannot do any of her personal needs -- she cannot feed herself, hold a cup or take a bath. She cannot speak. She is incontinent and wears diapers. She must be supervised and attended to throughout the day. She has no concept of danger. She uses a wheelchair to go to school and to go any distance.

Alison receives Supplemental Security Income (SSI) and Medicaid, and is on Louisiana's Medicaid Community Home Based Waiver which provides personal care assistance (PCA) to her and respite for us. Alison has seen a range of pediatric medical specialists, including opthamologists, neurologists, orthopedists, and ENTs. She also sees a chiropractor. She receives physical, occupational and speech therapy in the school system; however there is no physical therapist on staff in our local school system, therefore Alison receives her physical therapy for school at the Opelousas Area Cerebral Palsy Clinic. Although school bus transportation is provided to the Cerebral Palsy Clinic, I have chosen to take Alison there myself to limit the time she is away from school.

Opelousas is in St. Landry Parish, one of the largest geographical parishes in Louisiana. Specialized health care and therapies, even support groups, for children with disabilities are quite limited, usually requiring a trip out of town.

Many of the pediatric medical specialists that Alison sees or has seen are located in either New Orleans or Baton Rouge. These specialists usually hold clinics in other cities, but not in our parish, which can and does present problems if limited or lack of transportation is an issue. A plus is that these specialists, as well as the pediatricians in Opelousas, usually take Medicaid, which provides health care for Alison.

Alison has been in hospitalized in Opelousas and Lafayette, and as far away as New Orleans, Houston, and Shreveport. When Alison was born, she had uncontrollable seizures, which required hospitalization in Lafayette, New Orleans and then later in Houston. She had eye muscle surgery in New Orleans and recently she had orthopedic surgery in Shreveport. The far away hospitalizations required long hours on the road, as well as leaving our other children, and incurring meal and lodging expenses.

Having to drive out of town for medical appointments can also be time consuming, especially when I worked full time. Out of town medical appointments also are hard on Alison's younger brother Dustin, especially since he often had to come along or be left behind with a baby-sitter.

Although we live in the largest town in St. Landry Parish, there are families only a few miles away from us who experience hardship with having limited or lack of transportation to and from medical or therapy appointments.

Locally, it can be difficult to get physical and occupational therapy. That is because there is no one locally who specializes in pediatric physical therapy and pediatric occupational therapy, and therefore may feel uncomfortable with a child with disabilities. It is also a problem because although some physical and occupational therapists may take Medicaid, they do so on a very, very limited basis.

Personal care assistance and respite workers are usually unwilling to drive from their base, usually in Lafayette, to towns and communities outside of Lafayette. I have gone from agency to agency for PCA/respite services, until an agency opened in my town. This agency has a local pool of workers to draw from.

Alison loves to be outdoors and play on the playground. A major disappointment is that there is virtually nothing available at various playgrounds to accommodate her special needs. We have had a special swing made for her at home, but there are no such swings at parks. I have seen enclosed slides that she could slide down, but there is no way, such as a wheelchair ramp, to get her to the top of the slide.

Recreational activities appropriate for children such as Alison are virtually non-existent in our area. Limited or lack of transportation can also present problems for children with disabilities in getting to and from recreational activities.

Many families that I know who have a child with disabilities are low income families. Any family who is in the low income bracket can face enormous financial difficulties; add a child with disabilities to the family and the financial difficulties can soar. Low income can greatly reduce the family's ability to overcome whatever obstacles they face. This can be true regardless of where the family lives.

Programs such as SSI, Medicaid and the Community Home Based Waiver have been very instrumental in helping us care for Alison and overcoming many of the obstacles that we have been faced with. Regrettably, these programs have been scrutinized on the Federal and/or State level which have left families like mine in fear of losing the very programs that are so vital in caring for a child with disabilities. Although the scrutiny of these programs seem to be on a standstill right now, we never know when they will be scrutinized again. Speaking out on behalf of these programs to help protect these programs have been one my greatest challenges.

There are positive things that we have encountered in our town, such as living right around the corner from school, many people knowing one another which make us closer knit than those in a large city, having family nearby, and that some local merchants have helped with some of Alison's special needs. Alison is well known and is greeted by many when we are out in our community. A trip across town takes only a few minutes, instead of the long time it can take in a large city.

I cannot end without also saying some of the positive things that we have encountered in raising a child with disabilities. Raising a child with disabilities can be very challenging; however it can be rewarding, such as it has been for me. Alison is so very special and dear to me and I cannot imagine life without her. Her spirit and her love have given me strength that I never knew existed within me. She has taught me to have courage. She has my undying love. I am proud to be her mother.

Thank you for allowing me to share this information with you.

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