Medicare’s Role for People with Disabilities

On May 1, I became eligible for Medicare. This is one of those milestones in life. I was able to access this benefit a few years early because of my muscular dystrophy. I am now on Social Security Disability Insurance (SSDI). The way it works is that after a five-month waiting period post-approval, you start getting SSDI payments. Then, after two years on SSDI, you begin Medicare eligibility.

Social Security started in 1935. This social insurance program came out of the Great Depression. Millions of people were unemployed and unable to care for their own basic needs. This type of economic help was for older individuals. At that time, people who were old enough received a basic monthly payment. This helped meet their essential needs. But social security was only a retirement program at that time and had no disability benefits.

In 1956, they added SSDI. A large percentage of Social Security beneficiaries today are people with disabilities and children who have lost parents. According to the National Academy of Social Insurance, more than 16 million people get Social Security because of disability or as survivor benefits. That’s more than 25 percent of the 61 million people getting this benefit.

For several decades this program helped prevent poverty for millions of people by providing a basic amount of financial help. But as the decades rolled along and people lived longer, one gap made evident was the lack of healthcare coverage. This was a huge gap in retirement security and led to the establishment of Medicare in 1965. This was a positive development for about half of the older population who had no health coverage before Medicare.

As with original Social Security, there was a gap. People with disabilities who became eligible for SSDI had no health insurance, so Medicare began to provide coverage in 1973. I am surprised it took so long. People with disabilities often have more health needs. They also make less money over their lifetimes.

These programs for people with disabilities have been lifesavers for so many. In today’s world, the importance of Medicare has become more prominent as we look at advancements in treatments. In the coming years we will see more treatment options for all rare diseases, and it’ll be imperative to fully fund Medicare.

We have seen historically that the disability part of these benefits always comes later. For Social Security, it was adding SSDI some 21 years after the program started. For Medicare, it was adding the benefit for people on SSDI nine years later. Today, there is still a gap that remains.

The gap I’m referring to is the inability to get a Medicare supplemental plan at an appropriate cost. The problem is that federal laws never covered protections for people under 65. States determine what is available. Some states do not offer these “Medigap” policies for those under 65. Others do but can take things like pre-existing conditions into account. It’s a hole in the law that needs to change.

Let’s take my situation as an example. I live in Illinois. In my state, I did have Medigap supplemental policies available. If I had been 65 when starting on Medicare, one of these would have cost me about $180 per month. This cost would have gone up at a slow rate as I aged.

Instead, because I was 61, I would have had to pay over $300 per month. I understand every disability is different but speaking only about myself, this does not make sense. Other than my LGMD2L diagnosis, I am very healthy. Outside of my annual physical, I only see a doctor when I’ve had a fall and injuries.

These federal programs need to be fixed. We need to allow individuals on SSDI and Medicare to get a supplemental policy in the same way as those not on SSDI, and at an appropriate cost.

Because I couldn’t get this at a reasonable price, I decided on a Medicare Advantage PPO plan. This is fine. There are pros and cons. But the PPO saves me thousands of dollars a year. My insurance broker told me that once I’m 65 the cost of the supplemental plans will stabilize. Because people can change Medicare plans every year during the open enrollment period, I’ll have some decisions to make then.

Let’s make sure our elected officials understand the importance of Medicare for all of us on disability. It is essential. I would love to hear from you on your experiences with SSDI and Medicare. It would also be great if you want to join teams of patients with muscular dystrophy as we reach out to educate our elected officials. We have a lot of work ahead.

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