The following story belongs to Nina Smith. Her words are powerful and stand on their own, but we preface her story by reminding our community that the possibility of Medicaid cuts is an ongoing concern. Nina’s story isn’t over. We have to speak up for rural healthcare before it’s too late. For current updates about possible Medicaid cuts, visit hillsdalehospital.com/medicaid and listen to our weekly Rural Health News updates, or you can watch the video of Nina’s story.
“I have to be her voice.” Caring for Family Amid Expected Medicaid Cuts
My name is Nina Smith and this is my Medicaid story.
My sister was born in 1961 with a birth trauma so she is developmentally disabled. She’s been disabled from childbirth and at two years old she started having seizures. Being developmentally disabled, she was not able to go to public school like my sister and I—she had to go to special education. From the time she was two years old, she had to be put on medications. My parents both worked. My dad worked three jobs to help take care of my sister. They did not get help until she was 13, and then she as put in SSI and Medicaid to help pay for her medications and her healthcare because my parents could not afford all of the hospital bills. They ended up filing bankruptcy because of it and finally my mom and dad got help. She has had seizures throughout her whole life. After my dad passed away, she had been seizure free. Three years later, my mom passed away and I became her guardian because she had breakthrough seizures after my mom passed away.
Connie, Nina & Carol (L-R), 1970
Carol has been on Medicaid, Medicare and social security from the time she was able to apply. She has always been on Medicaid and now she’s on Medicare. They helped pay for her hospital care. My mom lived in Florida so after she passed away, I had to move my sister from Florida to Hillsdale and get her started on the Medicaid program in Michigan. I had moved her from a care home that was outside of Hillsdale to a care home that is here in Hillsdale because I wanted her to be close to the hospital if anything was to happen. I didn’t want her to be afraid of going to a hospital and not knowing anybody so I made the decision to move her here. The care she receives now at the care home, her medications and her hospital stays…are all paid with Medicaid and Medicare. She has to receive proper care to live a happy life. She goes to a psychiatrist, she sees a neurologist, a urologist – so many specialists and it’s all through Hillsdale Hospital.
Taking on someone that you grew up with after you lose your parents and then you have to take the place of that parent is just so incredibly hard because I am not my mom, but I have to be her voice and express how horrible this would be for her to lose her healthcare. What would happen if I don’t have the insurance to help take care of her? I really don’t know what I would do if she doesn’t have the types of benefits she has now.
What’s so sad to me is that it shouldn’t be a Republican thing or a Democratic thing to care about each other. It should be a part of humanity.
You can be in the room with my sister for ten minutes and you will realize she is someone who has special needs and she needs to be taken care of. It’s not like she’s a freeloader. My parents worked to pay into this program. My sister worked at Wendy’s for 18 years. She got employee of the month twice. It wasn’t like she didn’t contribute. It’s just too hard to think about—especially her medications, her assisted living care, all of the doctors that she sees, her lab work because she has to check her levels on her Depakote*. There’s just so much we have to do to help take care of her.
Nina (L) and her parents, 1994
I think back to when my dad would be sitting at the table and he would be so worried about how he was going to take care of Carol. How is he going to pay for her medicine? I’ll never forget that, even as a young child: my dad sitting at the table wondering how he would pay for the medication she needs. That’s why he worked three jobs. It is so unfair to make us have to go back to those years when people struggled because there were no safety nets. There was nothing to help.
I just don’t understand how this could be happening. It does not seem right. I hope and I pray it doesn’t happen. The only thing I can do is be her voice and make sure she lives a happy life. I’m going to do that no matter what. It just seems so unfair that people like my sister have to pay the price. That’s my story.
*Depakote, also known as Divalproex Sodium, is a medication used to treat various seizure disorders. Patients taking Depakote undergo routine lab tests done to ensure adequate levels.
Take action to protect Medicaid from funding cuts at mha.org or ruralhealth.us. If you have a story to tell, contact Kyrsten Newlon, Hillsdale Hospital’s communications manager, at knewlon@hillsdalehospital.com.
