Unknown truths about disability

 Since becoming disabled, I have learned that the general public has many misconceptions about how individuals with disabilities live. I hope to clarify living with a disability for the general public.

Forced poverty: in order to receive Medicaid benefits, recipients must only have access to $2000 each month. Checking account and savings account totals must not exceed $2000 per month.  An individual receiving Medicaid benefits can not save for a rainy day. Individuals receiving benefits also are limited in what they can earn.  The stereotype of people choosing not to work and simply living off disability is totally false. Luckily, programs like Ticket to Work allow individuals with disabilities to work without losing benefits. However, these programs have strict rules and often a simple promotion can risk the loss of benefits.

Colorado has recently created a Medicaid buy in program which allows people to pursue careers. This program is revolutionary and often used as the framework for other state programs.

People receiving Medicaid benefits often refer to this as forced poverty because people are forced to stay in poverty in order to receive important medical care. The federal government has not raised the asset limits in 20 years. $2000 today is much less than it was 20 years ago.

Marriage penalties, if two people who receive Medicaid benefits wish to marry, their monthly asset limit raises to $3000. Many couples who both receive Medicaid benefits choose not to marry.

It’s extremely difficult to get Medicaid to cover all medical expenses. Medicaid will only pay for one wheelchair every five years. Medicaid consumers must choose between a manual or a power chair. Most power chairs can’t be transported in a standard car. Consumers who choose a power chair often become isolated because they can’t use standard transportation. Many individuals with disabilities don’t have a choice, many disabilities require a power chair. 

I recently learned that Medicaid will only pay for one hospital bed every five years. I received my hospital bed in 2018 and the footboard is broken, when I called about a repair, I was told that nothing can be done until 2023. I have now duct taped my footboard together!

Medicaid typically only covers common medical cost. If an individual wants to try an experimental drug or therapy, Medicaid rarely will cover the cost.

Medicaid benefits are reviewed at least once a year. To keep benefits current individuals have to provide bank statements, vehicle information and legal documents to the state along with medical documents proving disability.  People with disabilities have to give up privacy to receive necessary medical benefits.

These are just the most common issues, I’m sure there are more. The point is that individuals with disabilities often have to deal with issues that aren’t directly caused by their disability.  The general public must realize that people with disabilities are often stressed by more than their medical disability.