My Name Is Pamela Zotynia And This Is My Family’s StoryFeb 26, 2017
Recently, The Arc of the United States issued a Call to Action to reach out to our Senators and Representatives to let them know why the ACA and Medicaid are essential to people with disabilities and their families.
For the past two weekends, I have participated in healthcare rallies to advocate on behalf of the individuals with intellectual and developmental disabilities and their families served by The Arc of Luzerne County. I could think of no better way to do this than to share my family’s story. Below is the text I read and shared with our Congressmen and Senators. If you would like to share your story to help us advocate on your behalf, please contact us at email@example.com
My name is Pamela Zotynia. I am the executive director of The Arc of Luzerne County.
The Arc advocates for and serves people with intellectual and developmental disabilities (I/DD), including Down syndrome, autism, fetal alcohol spectrum disorders, cerebral palsy and other diagnoses. The Arc has a network of over 650 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes.
I came here today to share with you how Medicaid & the Affordable Care Act impact my family, as well as many others served by The Arc across the country. There are 6.5 million people in our country who have an intellectual disability. My son is one of them.
Robert was born 30 years ago, premature and with what we thought were some minor developmental delays. Over the course of the next few years, and many visits to doctors and therapists, we discovered that his disability was more significant and he would require lifelong support. His formal diagnoses include cerebral palsy, intellectual disability, seizure disorder, visual impairment, anxiety, as well as others.
For most of his childhood, while the other children were out playing in the neighborhood, we spent our time at rehab hospitals where he had multiple orthopedic surgeries to correct contractures, hip dysplasias, spinal fusion, as well as thousands of hours of therapies to prevent addition contractures and help him learn to use his body to the best of his ability.
As he got older, his needs increased. His father, sister, and I assisted him as best we could. We took turns feeding him, drove him to medical appointments, assisted him to complete his daily range of motion exercises, and physically assisting him with his daily needs like showers, dressing, transferring him in and out of bed and his wheelchair, and many other things.
While other families spent their summers at picnics and vacationing, we spent our time at meetings with teams of professionals developing plans for his education and healthcare needs.
By the time Robert was a teenager, his body had become stronger, but mine began to weaken. After so many years of bending & lifting him, my back finally gave out. I herniated several discs and developed neuropathy. My doctors advised me to stop lifting anything over 10 pounds. This was devastating news for our family. I left the doctor’s office wondering how would my son remain safe and healthy if I wasn’t able to lift him. Searching for help, I placed a call to my son’s case worker at our county’s Mental Health & Developmental Services office. They explained to me that because Robert was eligible for Medicaid, he could receive supports and services through a Medicaid funded waiver. We applied, and he was approved for a consolidated waiver administered through the Office of Developmental Programs. The waiver allows him to purchase services to meet his needs to keep him safe and healthy in the community. We were able to hire staff for a few hours each week to help him with his care after school and on weekends.
When Robert exited school, we were faced with a new set of issues. What would he do all day long? Who would take care of him while his father and I were at work? The waiver allowed us to explore options in the community. For a while, he attended what we commonly refer to as a “Day Program”.
When Robert was 25, he began to develop some new medical issues. Because of his communication challenges, it was difficult to identify and diagnose what exactly was happening. I took him to a variety of doctors searching for an answer. Every day he got worse, his pain increased, he stopped sleeping and eating, and spent most of his days screaming and begging for help. He was unable to continue to attend the day program. The Medicaid funded waiver provided us with access to assistance to identify specialists and professionals who struggled to help my son, and my family. And then, on February 3 2013, my son woke up pale and weak. When I removed him from his bed, he began to projectile vomit blood. I rushed him to the hospital, where we were told he was bleeding internally and could possibly die.
We spent weeks in the hospital. Robert received multiple blood transfusions as they searched for the cause of the bleeds. They identified several bleeds in the lining of his stomach, and also diagnosed him with gastroparesis, a condition in which the spontaneous movement of the muscles in your stomach does not function normally, affecting the body’s ability to digest food.
When the doctors thought he was stable, they sent us home with visiting nurses to monitor him daily. A few weeks later, he stopped eating and again started screaming. He was readmitted, and after several days it was found that he had blockages in his bowels.
It’s taken several years for Robert to recover from this medical trauma. The supports he receives through the Medicaid funded waiver have allowed us to develop a program in our home to support him in his recovery and to develop a meaningful life in the community. He is now an active volunteer for several organizations, including The Arc. He visits a wellness clinic twice a week where he receives non-invasive pain management treatments. We pay cash for this, because he is unable to use tradition medications used for pain management due to the side effects that will adversely affect his gastrointestinal issues. Nutrition specialists have assisted us to develop a dietary plan that meets his needs and allows his digestive system to operate correctly. His support team assists him with his daily needs, and he is currently searching for an opportunity to become employed so he can become financial secure when I am no longer available to assist him with his financial needs. We developed tracking systems for his support staff to document his medical condition, sleep patterns, behavioral health patterns, and bowel movements so we can quickly identify issues and intervene before they become critical.
I came here today to share our story because I want people to understand what it is like for the thousands of families in our country who are supporting their loved ones who have disability. I want you to understand that without the long-term supports and services provided through Medicaid our families will collapse. For me, I would be unable to work, pay taxes, and purchase health insurance for myself and my son to supplement our medical needs. Without a paycheck, I could not afford my home, I would be unable to pay my bills or purchase food, and my family would join many others in our country who live in poverty and are dependent on the social safety net that is currently at risk of being dismantled in our country.
The Affordable Care Act has allowed me to purchase private health insurance regardless of our pre-existing conditions. If we allow the ACA to be repealed, my son & I may become ineligible for health care due to our pre-existing conditions.
I also have a 32 year old daughter, Tiffany. Until the Affordable Care Act became law, she was unable to afford health insurance. A few months ago, she was diagnosed with type 1 diabetes. She is now insulin dependent and will be for the rest of her life. Her doctor told her if she had gone untreated for a few weeks longer she could have died. If the ACA is repealed, she also may become ineligible for coverage due to her pre-existing condition.
This is just a snapshot of our life. For me to tell you our full story would take all day. There are thousands of families like mine. There are 50,000 people with intellectual and developmental disabilities in Pennsylvania who receive Medicaid funded supports & services through the Office of Developmental Programs, more than 14,000 people who are waiting for services, and nearly 3 million people in Pennsylvania and the 70 million people in our country who receive coverage through Medicaid.
Governor Tom Wolf has proposed a robust budget to address the needs of many of the individuals and families who continue to wait for supports and services. I applaud him for recognizing our needs and addressing them in his plan to serve the citizens of the Commonwealth. But I have to wonder, where will the money come from if the federal government approves cuts to Medicaid funds they are currently considering.
To the legislators who were unable to join us today, I ask that you stand on the floors of the House and Senate and fight on our behalf to protect the needs of your constituents. Do not allow the ACA to be repealed and replaced without the assurance that people with pre-existing conditions will continue to receive coverage. Do not vote to approve the Republican proposal that suggests paying for the ACA repeal by changing the way Medicaid is funded. Giving states a choice between per capita caps and block grants would be devastating for people with disabilities and would also negatively impact already cash-strapped states.
And to all of you who join us here today, make sure your voices are heard. My son’s voice, like so many others with disability, is not loud and often goes unheard by our elected officials. We must be loud for him. Write letters, make phone calls, and share your stories. Do not allow the progress we have made to be set back. Join a movement, organize, and keep fighting. Make sure your legislators know that the decisions they make today will impact our decisions in the 2018 mid-term election when we use our most powerful tool- our right to cast our vote for the legislators who support our needs and to replace those who do not.
Don’t cut our lifeline.