by Kristy Arellano
My name is Kristy and I am a volunteer advocate for Colorado Cross-Disability Coalition. I am also a mother to daughter with a severe brain injury who requires 24/7 care for all her needs.
When I was little we did not have healthcare insurance. I remember going only once to the doctor when I had a bad case of strep throat. We rarely went to the dentist and for the most part we all were healthy and able to avoid needing health care. Looking back now I realize we were poverty level and very well could have qualified for government services. We never wanted for anything as my mom was a careful shopper who frequented thrift stores for most of our clothes and worldly goods.
Fast forward to May 2013. I was a working mother of three when my daughter was permanently injured during a suicide attempt. She lost oxygen for an undetermined period of time causing a severe brain injury. She spent a total of about 8 months in the hospital during the first couple of years after her injury. At the time we had Kaiser insurance through my employer.
I had no idea how we were going to make it through such a tragedy, emotionally or financially but I knew we wouldn’t give up! I remember receiving a letter from Kaiser during the first hospital stay, which lasted 4 months, stating we had exhausted our rehabilitation services. I remember the terror I felt at that moment knowing we could not possible care for our daughter on our own. I was scared the hospital would refuse to continue to treat out daughter and that we might be discharged with a 14 year old that needed round the clock care just to survive. Insert a hospital case worker. She explained that our daughter would qualify for Medicaid based on her disability. After jumping through the required hoops and getting misinformation about a variety of waivers we eventually navigated our way through the process to get her set up in the system.
She is now days away from turning 21. Her health has improved, but she still requires 24/7 care to ensure she doesn’t end up back in the hospital. I am so thankful for everyone who went before us to fight for these benefits and for those who continue to fight for them. I still struggle with resources to navigate the changing landscape as she moved from children’s services into adult services. Currently we have 22 hours daily approved nursing that decreases to 16 hours once she turns 21 because magically as an adult she will no longer need the level of care that she once did, right?It is a constant challenge to find and keep qualified nurses to care for her and never have we had staffing for all the hours she has been approved for. Low wages and minimal employment benefits through the agencies make home health nursing jobs less desirable then what hospitals and other institutions can provide. We are consistently scrambling to find ways to supplement what she needs by what’s provided.
Medicaid has been a huge blessing to our family. With Medicaid we have been able to bring our daughter home and for the most part have the supplies, medication and services that we so desperately needed to continue to care for our daughter. We have learned about state Medicaid and strived to educate ourselves about the variety of waivers she has been eligible for throughout the years. It has been a huge struggle to educate ourselves to make the best decisions about what she needs and then to advocate so that we can get the right medical equipment, in home assistance for care, medications and daily supplies. I had to quit my full time job just to manage her care and ongoing needs. I fight weekly with providers, insurance and/or Medicaid to ensure she has her basic needs met. While it’s not a perfect system, I don’t know how we’d manage without Medicaid to give our daughter a comfortable meaningful life at home, where she belongs, with her family.
**All Blogs reflect the opinions/experiences of people with disabilities or family members of people with disabilities. They do not reflect CCDC’s official position on any portion of Medicaid services.