Stories
Personal Stories
This is a national issue. Please learn how this has affected people around the country
Story
Personal Experience #1: Ellie (Missouri)
Ellie, a 25-year-old law graduate with spinal muscular atrophy, lives in Missouri. She has been on Medicaid since 18 and requires daily assistance. The Ticket to Work Health Assurance (TWHA) program allowed her to move out and pursue independence. However, she faces challenges in getting services due to a complex system and lack of clear resources. Ellie pays for personal care services and relies on family due to coverage gaps and worker shortages. She earns less than her potential to avoid losing Medicaid benefits and fears salary increases could jeopardize her TWHA eligibility. Ellie wishes for less restrictive TWHA eligibility requirements to fully realize her career potential.
Personal Experience #2: Michael (New Mexico)
Michael, paralyzed from the chest down, lives in New Mexico. He learned about the state’s Working Disabled Individuals (WDI) program from a benefits counselor. Enrolled in WDI, he receives coverage for essential services and medical equipment. However, he advocates for the removal or increase of WDI’s income and asset limits, which he finds restrictive for earning potential and savings. He also points out that policies considering spousal income and resources for eligibility hinder his potential marriage plans, as combining incomes could lead to losing Medicaid coverage.
Personal Experience #3: Brittanie (Minnesota)
Brittanie, a 35-year-old Minnesota resident with arthrogryposis multiplex congenita (AMC), receives Social Security, Medicaid, and Medicare benefits. Working part-time, she feared losing these benefits, and her fears materialized when her income led to a $600 monthly Medicare Part A premium. Through the MN Disability Hub, she learned about and enrolled in the Medical Assistance for Employed Persons with Disabilities (MA-EPD) program. This program allows her to work while maintaining Medicaid services, including personal care assistance and work-related modifications. MA-EPD has no income limit and a $20,000 asset limit. She appreciates that her spouse’s income doesn’t affect her eligibility, but moving states could lead to service loss. Brittanie calls for clearer program language and equitable policies for the disabled.
