TESTIMONY OF KAREN HIGGINBOTHAM *
HOUSE WAYS AND MEANS SUBCOMMITTEE ON HUMAN RESOURCES
Washington, DC
JANUARY 27, 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 about SSI for children.
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 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.
Doctors told us that Alison's prognosis was poor - so poor that they would not speculate about her future, but we were bound to prove them wrong. At the time, we had no idea what was ahead for us or Alison.
Alison has separate sessions for physical, occupational and speech therapy every week. The gasoline costs for all these trips adds up fast. When Alison was past the age when most children were potty trained, we were still buying diapers for her. We took her a speech therapy program out-of-town because there was no local program. We had to pay the full $800 tuition ourselves since Medicaid would not pay for a university program. The extra transportation costs were another $250.
When Alison no longer fit in a baby crib, we adapted a twin bed for her which cost $200. We also purchased special switch operated toys so she could play like other children and they can cost up to twice as much as traditional toys.
As Alison began to make some progress, we realized that we ad to make certain home modifications to help her develop even more. Since we were renting, we could not make the home modifications that would help Alison. So we bought a house even though it wiped out our savings and left us northing for other family emergencies.
To help Alison learn to do things for herself, we installed door levers and modified the bathroom for her. We added a ramp to the house for Alison's wheelchair and rails for the back porch so she can play safely outside. Because Alison spends most of the time on the floor, we put carpet in her bedroom. The driveway was only dirt so we needed to concrete it for Alison's wheelchair. Although putting gravel on the driveway would have been enough for us and Dustin, it doesn't work for Alison's needs. These improvements cost several thousands of dollars.
Alison must have shoes with good ankle supports. Her shoes cost $50 - $60 each, not like the $15 shoes that Dustin gets. Alison requires extra clothing because she is incontinent and I leave extra clothes at school and in the care for her frequent emergencies. We want to get an adapted tricycle for her. It would cost about $400 compared to the cost of Dustin's $20 bike. Medicaid won't cover this because recreation is not considered medically necessary. But we&'d really like Alison to have a tricycle so she could feel more like other kids -- and it would strengthen her leg muscles.
One of the most difficult expenses for Alison is a funeral plan and burial plot. Most life insurance companies won't insure a child with disabilities. One company has insured her at a higher rate, but only for $5,000. Although this will cover a funeral and burial if she dies now, it won't be enough for later. We bought what we could because if we die before her, we don't want Dustin to have to pay for his sister's death.
I have described the costs we have for Alison, both on a daily basis and the extra things connected with her disability. These are expenses that we don't have for Dustin. None of these expenses are covered by Medicaid.
Every month I send a letter listing monthly income with my husband's and my check stubs to the Social Security Administration. Once a year, Social Security sends us a report to fill out on how Alison's SSI check is spent. I lop the expenses for our entire household. House payments, utilities, house insurance, food, maintenance and repair to our home is divided by four to account for Alison's share. Any expenses that are strictly for her are logged as such and I use this information for Social Security's report.
SSI is a tremendous help for us to provide what Alison needs. In the past year, Alison's monthly SSI check as averaged $394.47. The check varies from month to month because my husband gets paid every two weeks so some months he get two paychecks and other months he gets three. Even if Alison got the maximum of $458 every month that would mean she would get $5,496 a year. If Alison were institutionalized, our state and federal government would pay $60,000 a year for her. What do you think taxpayers want to spend?
If Alison were in an institution, all her needs would be provided at no cost to us, but we want to care for her. Actually, she would not get everything she needs in an institution. She would not get the love and nurturing of her family. She would not have the opportunity to enjoy a family life like other children do. She would not be able to learn how to live in the community. She would not grow up where ALL children deserve to -- in their own homes with their families. We believe that families who want to raise their children with disabilities at home should have the choice to do so. SSI allows us to make that choice.
If my husband and I died today, Dustin would go to a foster or adopted home. But Alison probably wouldn't be so lucky and I bet she would end up in an institution. When some people talk about family values and family unity, it seems like they only mean for "normal" children who don't have special needs.
Alison is the light of or lives. She has come farther than doctors every expected her to. When she was four, she learned to crawl, pull to stand and communicate with gestures. One month shy of her sixth birthday, she began to walk unassisted in the house. She still needs her wheelchair when we go out and for any kind of distance. We are elated by her progress and we're proving the doctors wrong.
Her eyes light up when her daddy comes home from work. She shrieks when Grandma and Grandpa come visiting. She loves to put on my shoes just like most girls. She loves yogurt and going bye-bye. She attends Sunday Mass and goes to religion classes. She fights with Dustin just like any sister would. She laughs, shows you where her hair is and loves to hear music before going to bed. Dustin adores her. If Alison were put in an institution, my husband and I would be devastated. And so would Dustin because he would lose his favorite playmate and best friend.
Alison's disabilities are hard on all of us -- emotionally, physically an financially. My husband has worked and paid taxes his entire adult life. I have a small part-time job. I miss working full time, but being at home means I can work with Alison on her therapies every day and take her to all the therapy and doctor appointments. We get respite care and personal care assistance for Alison which frees up some time for me to be with Dustin - he deserves a mother, too.
Even if I did not have a child with disabilities, I would still want the SSI program for eligible children with serious disabilities and their families. I think many people who do not have disabilities 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.
Our family lives modestly and within our means. My husband works hard to support us and to meet our ordinary needs and I try to help. But we need some extra help to care for Alison at home and we are made to feel guilty about getting it.
In closing, I want to say that Alison is not a burden to us. We love her dearly. We want her to reach her fullest potential in life and to have some level of independence as she grows up. She would never have progressed life this in an institution. The SSI she gets allows us to give her our constant love and attention. We, her family, are the best decision makers about her needs. Thank you.
Note: Karen Higginbotham was a previous name. I now go by Karen Lagrange Coleman.