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Office of Disability Concerns
Will’s Corner, Oklahoma
(Serving the Disability Community of Oklahoma)
Volume 12, issue 4
I’m Still Alive
An Oklahoma City woman tells her harrowing story of abandonment, drugs and death with determination to recover from serious mental illness. Her story of heroism in the face of great odds is an inspiration.
Yes, with my mental illness I still have moments of confusion, despair and depression. But with my medication and my coping skills, I’ve learned to function and be a productive person. It has not always been that way.
I have been severely depressed and anxious all my life. I also have post traumatic stress disorder (PTSD), and I’ve abused substances in trying to cope. I can only hope you’ll see why and come to understand what has happened to me.
I’m the oldest of five children. My mother was a street dealer of heroin and cocaine and an addict herself. When I was growing up we had to “sift” heroin by measuring it and tying it up in a balloon.
My stepfather raped me from age six through nine. When I told my mother about it, she said “Do whatever he (stepfather) says because your daddy don’t want you.” Yes, my daddy abandoned us. I think he just couldn’t deal with my mother anymore. Because of her addiction my father did not want to participate in my life.
I tried to commit suicide for the first time when I was thirteen. I took a bunch of my mother’s pills. Instead of taking me to the hospital, she beat me up. She didn’t want anyone to know that I had attempted to take my life.
I went to a psychiatrist to find out why my hair had all fallen out. I remember telling that psychiatrist that people treated me so bad, and I asked why. He told me they treated me bad because I let them. I decided right then I wasn’t going to let them anymore.
I left my mother and lived on my own. I talked with my psychiatrist about her and said I loved her in spite of everything she had done to me. He reminded me that I could still love her and not like the things she does.
I started my own addiction at nineteen. Drugs were so easy to get, and they helped to deal with the pain—temporarily. I was cooking and freebasing cocaine and dealt a little to supply my habit.
I tried to commit suicide the last time at thirty-five. I barely remember strapping my children into the car and driving to those railroad tracks. Two trains were coming at us from opposite directions.
I suddenly became aware when I heard my children screaming and crying. I heard the loud horns blaring down, and a still, small voice said, “Turn on the car and move.”
I realized what I had done. I wanted to kill myself, but I was going to kill my children too. Something had to change, and that something had to be me. It took several times at drug/alcohol treatment and a period of homelessness, but change did occur.
I learned how to say “no” to people. I learned how to accept people as they are. I learned how to grow up and become an adult.
I married my husband in 2007. My daughter just began attending Oklahoma State University, and I have a son who plays football for his high school team. My mother died the same year I got married.
Now that my mother has died, I have a father and a step-mother that are wonderful to me and my family. My life has improved so much since they became a part of it. I am happy to be alive.
The National Association of Mental Illness (NAMI) in Oklahoma has a speakers bureau of people who have recovered from mental illness. If you would like a speaker to address your group, call 800-583-1264. Ask for someone from the “In Our Own Voice” program.
Straight Talk About Social Security
We are beginning a new campaign cycle for the 2012 national elections, and there will probably be plenty of rhetoric about Social Security if this election is like recent ones. I decided to visit the Social Security office in Oklahoma City to get some straight talk about a program which means so much to people with disabilities.
Jose Olivero is the Public Affairs officer for Social Security for the central part of Oklahoma. Tammy Niles is also present at our interview. Tammy is the Operations Supervisor for SSI at the Oklahoma City office.
For a brief tutorial on Social Security 101, Supplemental Social Security (SSI) is a program of cash assistance to people who have not worked and paid into the Social Security system or who have worked and paid less than ten years. SSDI (Social Security Disability Income) is a program for people who have paid into the system with payroll taxes at least ten years. It usually provides a larger monthly check than SSI.
There are three ways you can apply for Social Security if you are a person with a disability. Social Security’s favorite way to apply for benefits is to go online at www.socialsecurity.gov and submit electronically. There will be a place on the online application for you to authorize Social Security to get your medical information. This requires you to print and send to SSA a Medical Release Form. Without this form, your claim will be denied.
You can call your local Social Security office and schedule a telephone or in-person interview. You can then come to the office, or at a scheduled time a Social Security employee will call you and take information for an application over the phone. You can also call the national, toll-free Social Security number (800-772-1213) to schedule an appointment.
You don’t need to laboriously hunt down copies of all doctors and hospitals to verify your disability. They’ll do that legwork for you if you give them full and accurate information on where they need to go to get that documentation.
If Social Security determines that you do not qualify for SSDI and may qualify for SSI, they may ask you to actually physically come to the office. Otherwise you can forget the headache of a security check and a waiting room in the local office.
There have been Congressional budget cuts to Social Security like there have been to many government programs. Those budget cuts do not affect your Social Security benefits. They do affect office hours of operation and outreach services. Nationwide offices now close their doors at 3:30 p.m. Monday through Friday.
There are challenges to the Social Security system long term. It is estimated that in 2037 (26 years from now) Social Security will have less money coming in than going out. There are many ideas out there on how to correct this imbalance.
Some people propose we extend the time you can draw full benefits to age 70 over the next 100 years. Some people propose raising the current payroll tax or increasing the limit of taxable income from the current $106,800 to put Social Security on a better financial footing. Jose Olivero states, “What should be done with Social Security is a debate, and the American people are going to have to decide what they want to do.”
Whatever we decide, Mr. Olivero points out that Social Security was not designed to meet all our financial needs. Social Security was intended to replace between 25 and 40% of the worker’s income. If this is true, we all need to consider saving more to meet our needs as we grow older and develop disabilities.
One Family’s Experience
I interviewed Scott and his father, Claude, for three hours in their home recently. The following information is based on their story. This interview documents one family’s experience as they perceive it.
Scott was a middle-aged man with a good job when he was diagnosed with primary progressive multiple sclerosis in 2005. Only ten percent of people with MS have this most virulent form of the disease.
Fortunately Scott has concerned parents who are willing to provide the support he needs in what has come to be the most serious challenge of his life. It turns out that dealing with the multiple sclerosis was only a part of the challenge.
As the family has come to understand, dealing with the medical establishment and insurance issues proved almost as difficult as the disease itself. Scott developed a huge pressure sore after surgery to install a supra-pubic catheter. He was treated in a local hospital where his pressure sore actually grew in size.
Scott feels that one of the factors contributing to his now being completely bedfast is not receiving the aggressive physical therapy to maintain his leg use after his first surgery. Today Scott’s father must call EMSA to help transfer his son from his bed into his wheelchair when Scott has scheduled doctor appointments with assistance from the fire department if he must go by ambulance to an unscheduled visit to the emergency room.
Claude outlines his efforts to meet his son’s needs for special equipment and architectural modifications to their home to enable the family to better meet Scott’s needs. Claude purchased an expensive wheelchair for his son when it became obvious Scott would no longer be able to get around on a walker.
He also purchased a ramp-equipped van to have a way to transport his son to medical appointments. Scott was no longer able to transfer himself into a car from his wheelchair.
In the realm of insurance, Scott was able to purchase private, medical insurance from the job he had before his diagnosis. He also has Part A Medicare insurance that covers hospital stays. He can’t afford the extra premium for Part B Medicare, and one of his doctors doesn’t accept Medicare patients while others may stop accepting Medicare patients.
Unfortunately, having both public and private insurance has brought on a billing nightmare when hospitals and doctors bill the wrong insurance for the wrong service, and the family is held responsible for the charges. The headaches never end.
Claude is appalled at having a doctor’s bill go to collection when the family never received a bill in the first place. However, when the family did research the bill after being informed by the collection agency, they found that the services had never been received.
Claude was tenacious in his determination not to pay for services his family did not legitimately owe. He fought back by making a complaint against the doctor to the Board of Medical License and Supervision.
Claude advises the public to compare the EOB (explanation of benefits) from the insurance company with an itemized bill from the provider. He makes sure that what the insurance company pays for and the bill the provider presents match before he pays anything. He continues to find between $20,000 and $25,000 billing errors each year by cross referencing his paperwork.
Claude has learned from experience to ask for itemized statements from both doctors and hospitals. He feels that either a professional organization or some office in state government like the Attorney General’s Office should be empowered to investigate billing errors as a service to the consumer.
Claude and his wife were willing to take their son into their home when his needs became too great for Scott to handle alone. Unfortunately, many agencies which would help Scott if he were to live alone will not help him while he lives with his family because Claude’s income is too high.
It is ironic that the family continues to pay a lot of out-of-pocket expenses when they have chosen to care for Scott and meet a family member’s needs. Claude has found out from experience that “being disabled is the most expensive thing in the world.” Unfortunately, he may be right.
State-of-the Art Homeless Resource Center
Oklahoma City has just this year (2011) opened a homeless resource center a mile west of downtown to fully address the multiple needs of families and singles who are homeless. Those needs include locating affordable housing, family disintegration, medical/dental needs, substance abuse and mental health issues.
Dan Straughan of the Homeless Alliance has put together an array of social services under one roof (17,000 square feet) which has the potential to improve the lives of people who are homeless. The City of Oklahoma is doing an about-face from the days in the 80’s when the homeless were given one-way bus tickets to get out of town. Instead, they are welcomed with loving arms and given an incentive to change their lives.
Dan has been with the Homeless Alliance for seven years and has seen the homeless population grow from the stereotype of a single man with substance abuse issues and chronic mental illness to include couples and families with children who were down on their luck in our country’s economic crisis.
It was that same economic crisis that gave birth to a vision to address the needs of homeless people in Oklahoma City. Funds became available nationwide in response to the housing foreclosure crisis in 2008. Oklahoma City petitioned HUD to use a part of those funds for the city and the state to build the West Town Resource Center. Add some private donations and seven million dollars was directed to build a day shelter for the homeless and office space for a variety of social-service organizations to serve them.
Why a day shelter? It seems that homeless shelters have a policy that their residents must leave the shelter early in the morning. They are not allowed to return until the evening meal is served. Homeless people need shelter during the day from the searing heat or freezing cold. Now such a facility exists in Oklahoma City.
The day shelter is equipped with lockers for its patrons to have a safe place to keep their belongings. It also comes with a place to take a shower for both men and women. Breakfast and lunch are served at the day shelter. There is even a room for a troubled person to calm down with a comfortable couch and low, soothing lighting.
West Town has everything. In an adjacent building to the day shelter are a string of offices representing agencies which can help people who are homeless put their lives back together.
Mental health is there to treat mental health and substance abuse if a person wants that. Clients can learn how to respond to domestic violence. Workforce Oklahoma has a presence in the area of employment. You can apply for public housing at West Town. Legal Aid has an office to provide legal information on eviction. (Many families become homeless when they are evicted from their homes.)
It’s all at West Town. A mobile facility will soon be available to provide medical and dental services to one of the most poorly-served populations in the city. Yes, West Town brings hope for a better life to people who have lost hope.
Dan comments on one more service that the facility will provide as soon as they get the money to build it. I thought they had everything, but they need a place to keep the dogs that people who are homeless have with them when they attend the day shelter. West Town wants to build kennels. Sometimes the only companionship a person who is homeless has is their loyal dog. With a kennel, the person will be able to leave their animal in a safe place where food and water are available while they make use of the resource center/day shelter.
People who are homeless in Oklahoma City will not be able to say that nobody cares about them or their lives. People who are homeless will have an incentive to improve their lives and the assistance to do it.