When I chose to become a lawyer after my spinal cord injury, I experienced firsthand how complicated Medicaid, Medicare, Social Security and government work incentive programs truly are. Because of this experience, I strongly recommend that you should not pursue employment alone if you have a significant disability, especially if you receive Social Security benefits or use Medicaid long-term care supports like personal assistance. There is a laundry list of complicated rules and regulations that must be followed or you will get kicked out of the government programs you depend upon.
Navigating Social Security and Medicaid rules by yourself is, in many ways, more complicated than learning rocket science because at least rocket science follows logical rules. Many government programs, on the other hand, have thousands of rules with numerous gray areas. Because of this, so often when I am mentoring someone interested in working, I hear the same questions over and over again:
• If I work, will I lose Medicaid?
• If I work, will I lose my caregiving?
• If I work, will I owe an overpayment to Social Security?
These three questions consistently come up because of the unfortunate horror stories that we’ve all heard about people with significant disabilities who were not able to follow the rules. Too many of them lost their Medicaid and personal assistance, or owe Social Security lots of money for overpayments.
I have known a handful of people with significant disabilities who owed Social Security between $30,000 and $70,000 in overpayments. For years they failed to properly report their wages to the Social Security Administration and continued to collect their monthly Social Security checks. They thought that when they filed their taxes SSA would know they were working and would either stop sending or adjust their monthly Social Security benefits. In reality, it can take years before SSA realizes there are overpayments and that someone is double-collecting both SSA benefits and a salary.
But there are more positive stories of successful returns to employment than negative ones. The best outcomes for maintaining employment occur for people who navigate all of the rules with help. There are great work incentive programs in place that provide well-trained benefits counselors for free to help individuals with disabilities receiving Social Security benefits. Here’s what the two main work incentive benefits programs do:
• The Work Incentives Planning and Assistance program provides benefits planning to individuals receiving SSI or SSDI, and provides priority enrollment to those who are currently working, seeking work or have a job offer pending, as well as transition-age youth (14 to 25 years old) and veterans.
• The Ticket to Work program provides benefits planning and comprehensive employment supports to individuals receiving SSI or SSDI who are looking to return to work, about to be employed or recently started employment.
Strategic benefits planning can help workers with disabilities maintain Medicaid and personal assistance. As a lawyer living in Maryland, I am enrolled in the Medicaid buy-in program and continue to receive government-funded community-based caregiving.
Currently 45 out of 50 states have a Medicaid buy-in program that allows workers with disabilities in a particular state to maintain Medicaid while employed. Like Social Security, there are many rules that must be followed, and navigating a state’s Medicaid buy-in program by yourself is not easy. However, when you work with a well-trained benefits counselor, it becomes very doable and can lead to you learning about your many disability employment options and the existence of available Medicaid programs in your state, including community-based personal assistance.
Learning from others’ mistakes and pursuing employment with the help of a skilled benefits counselor and disability mentor leads to the best results. This year alone I have mentored hundreds of families about all things related to disability employment. I personally provide free one-on-one job mentoring and match interested people with a WIPA or Ticket to Work benefits counselor. Please message me at email@example.com or fill out this survey: tinyurl.com/JoshOnJobs. Also, as a board member of United Spinal Association, I highly recommend visiting United Spinal’s Pathways to Employment program at unitedspinal.org/pathways-to-employment.