It is hard to believe that almost ten years have past since the birth of my daughter, Alison. It is also hard for me to believe what I have done since her birth! From that day on, my life has changed! Within hours of her birth, we learned that Alison was experiencing seizure activity. Although we went from hospital to hospital with Alison, doctors could not control her seizures nor find out what caused them. At two months old, Alison’s seizures turned into a rare devastating form of seizures called infantile spasms, which usually leaves the child with severe to profound developmental disabilities. Alison’s prognosis was so poor that doctors would not even give us a prognosis. We were devastated!
At Alison’s neurologist’s suggestion, we entered Alison in a study of how low dose vs. high dose ACTH controls infantile spasms. She was randomly for the high dose protocol. After one (1) dose of the ACTH, the infantile spasms ceased; after four (4) doses the other seizure types ceased.
Although we were elated that the seizures stopped, Alison still is faced with having severe disabilities. Alison cannot speak, but can communicate some with informal gestures. She learned to walk short distances shortly before her sixth (6th) birthday. She uses a wheelchair. We haven’t been able to toilet train her, so she is still in diapers. We must feed her, dress her and bathe her. Alison also has mental disabilities, which has left her with a cognitive age level of approximately a two (2) year old level.
When she was an infant, I also enrolled Alison in an early intervention program for infants and toddlers who were at risk of developmental delays/disabilities. Alison receives special education at our neighborhood school.
Alison requires seeing a number of pediatric specialists and therapies. With medical bills rising, I sought government assistance for Alison, but she was not financially eligible because of my husband’s and my income, even though we were basically considered the working poor.
I had my third child, Dustin, when my oldest son, Chris, was thirteen (13) years old. I was dealing with a teenage and a newborn baby, who could do more than his year older sister. I was also dealing with working full time, taking Alison to her numerous medical and therapy appointments, and financial difficulties due to Alison’s disabilities.
I began writing to my federal and state legislators, my governor and the President. From the replies that I received, no one offered any help. I later learned about a program that was beginning in Louisiana that was not means tested. I immediately applied for it and learned all that I could about it. The program is Louisiana’s Medicaid Community Home-based Waiver (the waiver). The waiver provided an alternative to institutionalizing your child with developmental disabilities. Among the assistance provided by this program are personal care assistance, respite, environmental modifications and assistance devices. Alison was on the waiver within a few months.
News spread quickly about the waiver, and soon there were thousands of children and adults on a waiting list for it. By this time I was a member of Louisiana Citizens for Action Now (LaCAN), which advocates for in home supports and services for children and adults with developmental disabilities. We were part of a coalition to bring to the attention of our state legislators, governor and administration about the need for these services. Since these services cost approximately 1/3 that of institutional care, and that home care provides a better quality of life for the person with developmental disabilities, I thought that this would be an easy sell. Unfortunately, it hasn’t been. To this day, there are almost 10,000 people in Louisiana waiting for this program.
Although Alison was already receiving services through the waiver, I spoke about the need for these services because there are others out there waiting for them. I also spoke out because the waiver was and at times, still is, under scrutiny, with services at risk of being reduced. I wrote letters, made phone calls, attended legislative hearings in Baton Rouge, and met with elected officials about the importance of the waiver and other community home based programs.
Shortly after Alison got on the waiver, I lost my job. With my income gone, Alison became eligible to receive Supplemental Security Income (SSI) benefits, which is a federal program that provides a monthly cash benefit (the amount may vary, depending on income) and Medicaid. Although we already had Medicaid for Alison through the waiver, the cash benefit is very helpful to us for Alison’s needs, such as diapers and certain home modifications, which are not covered through Medicaid.
I learned most of what I know about advocating in support of services for children and adults with developmental disabilities from Kay Marcel, a woman who has worn many hats in the field of advocating. Through Kay’s support and guidance, I have been able to accomplish things that I never thought that I could. I’ve arranged several town meetings with local legislators, put together a Congressional candidate forum dealing solely with disability issues, and spoken at press conferences, public hearings, and various meetings.
The SSI program for children came under attack several years by some members of the U.S. Congress. There were many media reports of parents “coaching” their children to act “crazy” in order to get a SSI check. With this in mind, some members of Congress began to scrutinize SSI for children.
In January 1995, Alison and I was invited to testify in defense of the SSI program for children before a Congressional subcommittee hearing. Entering the large hearing room, I was overcome with nerves and my palms began to sweat. I knew that I had to pull myself together and do what I had come there to do, which was to defend this program not only for Alison, but for all the others who were in need of the program.
I think that Alison was overwhelmed by all of this. While traveling to Washington the day before, she was hit while in her wheelchair by a runaway passenger cart at the airport. She slept in a strange bed, and now she was in a strange place filled with strangers. She began to cry and had to be taken out of the hearing room. When it was time for me to testify, Alison testified as well — with her presence and actions. She made an astounding impact at the hearing. The subcommittee had second thoughts about ending SSI’s cash benefit for children who might otherwise be institutionalized. Without the benefits the SSI program, families like mine may end up being forced to place their child with disabilities in an institution, which would end up costing the government much more than it pays out in SSI benefits. However, there were changes made to the SSI program for children through the Welfare Reform Act signed in 1996, which affects mostly children with emotional and mental problems.
In March 1995, Alison and I were invited again to speak about SSI in Washington at a press conference sponsored by the Children’s Defense Fund. In June 1995, we were invited to participate in a press conference sponsored by Families USA in Washington concerning Medicaid. I spoke about the need of Medicaid for children with developmental disabilities.
We have access to agencies and/or organizations that have provided for Alison. Alison has been receiving free physical therapy through the Opelousas Area Cerebral Palsy Clinic (a United Way agency) since she 1991. She receives orthopedic care through Shriner’s’ Hospital for Children in Shreveport, which was the first Shriner’s Hospital. Alison recently had corrective surgery on both feet at Shriner’s. Alison took her first steps shortly after seeing a chiropractor.
Over the years, Alison has made progress in her development. She has blossomed. We marvel at every accomplishment, however small, that she makes. She is curious about her surroundings, and loves to ride in the van. We believe that Alison has achieved all that she has because she lives at home with us who love her and that she is part of our community. Alison is a joy to us and we love her dearly. We want her to have every advantage in life.
Alison’s disabilities have made a positive impact on my life. I have learned to face things head on. I now have strength that I never had before. Although we will soon be celebrating Alison’s 10th birthday, I will also be celebrating my own re-birth that Alison’s life has given me.