Edna Chadwell wants to make sure that everyone has constitutional rights to the freedoms of life, including the right to necessary medical care.
"Medical care is becoming a situation where only those who can afford it can live," Chadwell, handicapped from cerebral palsy since her premature birth and with no family to take care of her at her Clay County home, recently told The Brazil Times. "For many people, medical care is becoming a civil rights issue. When the state is allowed to make decisions instead of the doctors, it's changing the standard of medical care for many people."
Chadwell said her benefits in the Indiana Family and Social Services Administration's Medicaid Attendant Care Waiver Program were cut due to budget cuts at the state level, and feels she is fighting for her life.
"It scared me at first. I am supposed to get 10 hours of attended care that is split into two five-hour shifts per day," she said, and then presented statements from her doctor backing up her claim. "But they cut my hours to two two-hour shifts in February. How can they cut benefits in February for a law that was not supposed to take effect until July 1?"
When she filed an appeal process her benefits were sealed until the matter could be officially resolved.
On Aug. 12, 2005, Gov. Mitch Daniels projected $14 million in annual savings when he announced changes to the state Medicaid waiver program. The changes were supposed to create a dramatic reduction in bureaucracy and paperwork that would allow an estimated 500 new clients to be served by the program.
At the time, Family and Social Services Secretary Mitch Roob said the new billing structure and elimination of extensive daily paperwork would allow for changes that would help many individuals who have been waiting for assistance from the medical waiver program for years.
"Our focus is on the quality of care, not the quantity of paperwork," Roob said. "When we create an environment in which the provider can spend more time with clients and less time on paperwork, we will save money and be able to serve more clients in the waiver program."
Although unable to discuss case specifics due to privacy issues, Division of Aging Deputy Director of the Indiana Family and Social Services Administration Karen Filler spoke with The Brazil Times in a telephone interview Monday afternoon.
Filler said the renewal process for the new five-year waivers had to be completed on or before June 30. She said the waivers for attendant care are for additional "wrap around" medical services that are provided in conjunction with other Medicaid medical services and are not intended to be the sole basis for medical attention.
According to Filler, many of these medical services need prior Medicaid authorization for each case, and a cap of 40 hours per week has been established to ensure individuals receive the proper medical attention.
However, Chadwell said that is a problem she has dealt with, as she has been unable to locate a local attendant care program that will pre-authorize her Medicaid claims.
But, if an individual experiences a change in their case, Filler explained that individuals have the right to appeal and confirmed the benefits will be secured until a final judgment has been made.
"Our job is to ensure that an individual receives the right medical services from the right sources," she said. "We want to make sure everyone receives the proper care they need."
Fillmore said she is willing to work with Chadwell to ensure her case was handled properly and that she is receiving all the benefits available for her.
However, Chadwell worries that others, like her, have fallen through the cracks in the new system.
Chadwell said a judge recently ruled against her appeal process and two case reviews, citing that individuals who are experiencing a chronic or permanent, progressive illness or condition or have to be dependent upon a feeding tube could receive the level of care she once had.
"They say it has to be a life-threatening issue, and although I might not be in that situation now, if I only receive care twice a day, I could be," she said.
Chadwell said if her attendant care was cut -- allowing her to get food, water and be allowed to use the bathroom only twice a day -- within a week, her life could be in jeopardy.
"I can't do the basic life skills necessary to take care of myself. I can't cook or dress myself," she said as the telephone hanging only a few feet away on the wall rang.
After shrugging off help, and struggling to reach the phone, she said "no thanks" and hung up.
"All that effort, and it's only a salesperson. I really hate that," she said, winded from the effort.
Paying for private care is not an option for Chadwell.
"At a cost of up to $250 a day, I, like many other people, can't afford to pay for private care. For me, the state's alternatives are death or an institution. I don't like either of those plans," she said. "They're going to have to develop a Plan C. It almost seems like the state doesn't value the life of a disabled person, but disabled people have value."
Chadwell, who has a bachelor's degree in Social Services, is confined to a wheelchair and physically dependant upon others for assistance with her basic needs, but her independent spirit is strong.
On Tuesday, Chadwell informed The Brazil Times the American Civil Liberties Union was interested in providing free legal counsel to help her through the rest of her appeal process.
Time is urgent for Chadwell and she wants to bring attention to her plight as a way to help other families or individuals who don't have family to care for them facing the same problem.
"The question really becomes, does the State of Indiana have the right to determine who lives and dies as they can solely determine what type of medical care is provided to individuals," she said. "Doctors take an oath to sustain the lives of their patients and make the right medical decisions, but not the government. What really bothers me is if their family or someone in the medical community abandons a person and leaves them to die they would be prosecuted. But it seems the state can do it under government immunity. Why should they be able to decide who lives or dies based on money?"
If a family is facing the same situation Chadwell is, she encourages them to file for a case review and then make the effort to build their case.
"Get with your doctors to get your medical records," she said. "Then go to a reputable attorney, because you're going to need legal representation. Contact area legislatures and representatives about this, tell them they need to be aware of what is happening and get involved. Case reviews and court cases take time -- sometime years to resolve -- but not everyone has the luxury of time. I know I don't."
Contacting the ACLU
To contact the Indianapolis office of the American Civil Liberties Union regarding assistance or legal concerns, call 317-635-4059 Ex. 224.
Due to the large volume of calls, officials request that people leave a clear, concise message along with a telephone number where they can be reached.
A volunteer will return the call, but officials said people need to be patient because response time varies due to requests. Some requests can take as long as 8-10 weeks for a response.
Legal forms can be submitted online at www.aclu-in.org or by mail at ACLU-Indiana, 1031 E. Washington St., Indianapolis, IN 46202.