My name is Nicole Bishop and I am a volunteer disability advocate and social worker currently employed at AllHealth network working with at risk teens and young adults experiencing first time psychotic episodes. I live independently with my family including my two-year-old son, and partner. I also am diagnosed with Spinal Muscular Atrophy type 2 which is a neuromuscular condition under the larger umbrella of Muscular Dystrophy disorders.
I would consider myself a success story in many ways. I have successfully lived independently, having my own apartment, caregiving for my child, and completing a master’s program with a 3.95 average. However, being disabled means that I must fight and advocate to provide myself with the needed resources and supports to maintain a comfortable independent quality of life. This includes accessing Medicaid services for basic daily living. The current services I access through Medicaid include the Consumer Directed Support System (CDASS), durable medical supply coverage, and primary care doctors. I am also considered a “pickle” which means I qualify for Medicare services as a primary insurance and Medicaid as a secondary. This was not a requirement but I decided on adding in Medicare when asked by a case manager, at that moment of decision the faces of countless receptionists, and doctors flashed across my mind “oh you’re on Medicaid….I see”. The passive aggressive judgment of being on the “poverty insurance”.
The love-hate relationship of Medicaid
Despite some struggles with Medicaid, I am eternally grateful for the program that I am currently qualifying for, Elderly, Blind, and Disabled (EBD) waiver. Through EBD I access CDASS and self-directed care which allows immense independence. I am free from the chains of home health companies, free from the dangers of the chaos of unknown caregivers, free from rigorous agency schedules, free to choose who comes into my own home, free to compensate family members for caregiving they are already providing, free to work, and free to become a mother, a longtime dream of mine. What does Medicaid mean for me? Freedom. However, having the supports in place that I do now does not mean that this comes easily. Adding in supports was an uphill advocacy battle involving education, learning self-worth, and connecting to the community. Initially through CDASS I was given a low budget that did not meet my caregiving needs. I can remember a filthy apartment, bed sores, depression, and illness. Thankfully I had friends within the disabled community who helped make the connection to first ADAPT and then Colorado Cross Disability. At ADAPT I learned of the disability rights movement and it ignited inside me the spark of worth. I am worth being care for, I am worthy of happiness and to have my needs met. After taking the advocacy class through CCDC I learned how to advocate within the Medicaid system and knew I could make drastic changes. I was assigned an advocate Donna Sablan who advocated on my behalf. Through a four-year struggle, totaling 225 prescriptions of proof of what I was already entitled for, I was given appropriate caregiving services. From then on, I have become passionate about advocacy, advocacy for myself and advocacy for others. I hope to continue into the future the gift of advocacy that was given to me. There is so many more boundaries that advocates must break through within Medicaid. As a community we can be and are successful in this. “nothing about us, without us!
**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.”