I've worked my entire life. In the late 1970s a group of us got legislation passed to create a state funded Personal Care Assistance program that enabled people with disabilities to work and earn an income and not be subject to Medicaid rules that held us back for decades by forcing us to live in poverty and not be able to work. Chapter 599 Medicaid as it became known, was the way out of poverty for hundreds of us. One by one we went to work and 599 Medicaid kicked in so that we could still have it pay for PCA and Durable Medical equipment. It truly made the difference for many of us to choose between a life of poverty and a life of opportunity through employment; one where we could, work for a living, save money and, for once, be on a level playing field with those who don't have disabilities.
The program became so popular that Gov. Michael Dukakis included a model of it in his 1988 Omnibus Bill that was the foundation of what was then called the Massachusetts Miracle. The new program was called CommonHealth and it too was a pathway to employment for people with significant disabilities that needed PCA and DME as well as prescription drugs. Once the bill passed, lawmakers decided to combine the existing 599 Medicaid program into the new CommonHealth program with the promise that nothing would change and it would be available to a much broader group of people with disabilities. CommonHealth had practical measures that included a copayment for people who earned more than 300% of the federal poverty level. Certainly fiscally responsible and wasn't met with any resistance.
So, the over 500 people in 599 Medicaid took a leap of faith and switched over to CommonHealth little by little. Again, the deciding factor for all of us was that nothing would change. But, we eventually realized that there was a huge change that none of us anticipated. Bureaucrats at Medicaid never raised a red flag to point out differences between the two programs. People with disabilities were happy just to work and have a program to support us. We did demand that there be no income or asset limitations and that eventually was incorporated into CommonHealth but lurking in the small print were deadly provisions that have now come to completely undermine us.
We learned that CommonHealth was part of a large Medicaid waiver with the federal government. As such, the program is subject to certain Medicaid rules and the biggest enemy is called Estate Recovery. What does that mean? It means that once I turned 55, every penny of CommonHealth money spent on Long Term Services like PCA will be counted against my estate when I die and MassHealth will clawback every penny from my family. It will and has devastated survivors of CommonHealth recipients. It's forced their estates to pay hundreds of thousands of dollars back to the state. When confronted, MassHealth throws up its hands and says that it's a federal requirement. What happened to the mantra that wooed us into the program; nothing will change. There was no provision in 599 Medicaid to take back money from our families that was spent on us when we die. It's an unconscionable practice and we were duped.
As if this isn't bad enough, program guidelines for CommonHealth also require a person to impoverish themselves in order to continue receiving Medicaid funded services like PCA and DME if they can no longer work or reach an age where they want to retire. So you work your whole life, pay your CommonHealth premiums and when you can no longer work you have to "spend down" into poverty where you were when you started and live the rest of your life without the benefits of your labor, judicious savings and, if you're lucky enough, retirement income. Another unconscionable bait and switch that none of us knew about when we were led like lambs to the slaughter from 599 to CommonHealth.
This is a call to action! We will rise up and defend the right to work for all people. We won't tolerate any more disincentives to lifting ourselves up out of poverty and into the mainstream. We won't be silent; in fact, we'll propose legislative changes to these guidelines that will prohibit forcing us into poverty after a lifetime of work and allow us to stop working and/or retire with dignity and with the savings we've earned, assets we've acquired and a quality of life we deserve.