Living in Fear as a Special Needs Parent

By Due Huynh

I read this post midday yesterday and tears were in my eyes.  My life, our family life, has never been so desperate, so hard, but I know fear. 

Two days ago, the mail carrier brought two letters from MassHealth which is Julia’s current insurer.  MassHealth has lots of rules for lots of programs and it is challenging to figure it out. There are help lines and FAQs both inside the MassHealth world and outside in the form of advocacy groups.  Still, MassHealth is labyrinth which makes the Triwizard Maze look like a walk in an English country garden.

When I was getting ready to move last July, I spent hours combing the websites and talking to advocates and information givers about a program for Julia.  There was no way that I could seamlessly move Julia from WI medicaid to MA medicaid.  In fact, I could not even apply for MA medicaid (which is a MassHealth program) until I withdrew Julia from the WI plan.  You might ask, what’s the big deal with that? What’s a few days or a week without insurance? However, Julia is someone who needs a health plan all the time.  She takes daily meds and receives weekly and monthly therapies.  I was fortunate to have private health insurance for her in WI which carried over, in part, to MA for the gap.

The MA application was filed the day after we moved and by the end of July, Julia was insured by MassHealth.  At that time, I knew that there would be big changes after her 19th birthday when I would need to re-apply for her as an adult with disabilities.  During the fall, I called the MassHealth information line twice to find out when the changes would begin.  I assumed I would be starting some process in the late Fall, but was assured during those calls, the last one on November 14, with two different information givers, that re-application was not triggers by her birthday but by her insurance anniversary.  And that I could expect notification of the need to re-apply some time in the Spring.

The big note here is that I called twice for to ask the relevant questions.  Wrong and misleading information is not an unheard of circumstance. I explicitly asked WHEN reapplication would be necessary. And given the same answer to my question twice, I was smugly satisfied that I understood the process.

Then, two days ago, January 27, I was notified that Julia would no longer qualify for MassHealth insurance on February 1.  This Saturday! 

Blood ran cold through my veins. I felt the fear.  I’ve spent the last six months filling out applications for insurance covered programs and tending to the waiting lists that Julia has been placed on.  There is a lot of good programming and therapies in Massachusetts but most of them, be they covered by any kind of insurance or private pay, have waiting lists.  All of my applications have MassHealth as the insurer and at least one of the programs, whose waiting list we’ve risen to the top of, is a specific program for MassHealth subscribers.  We have had 4 sessions of family therapy and the therapist has begun to form a relationship with Julia.  No MassHealth is the end of that therapy.  There is another program like the one we are a part of that is for commercial insurance subscribers and if we wanted to join that program, I’d need to fill out the application and get back on a queue. 

I knew the hoops I would have to jump through during the re-application process and I also knew that there would be a chance that she would not qualify for MassHealth as an adult with disabilities because she is in high school full time.  In that case, Julia would have private insurance until the next triggering event which for her ise two years after social security determined that she had a verified disability which would be in April, 2021.  At that point, she should (I’d write ‘would’ but rules can change.) automatically qualify for MassHealth.

When I called MassHealth yesterday I was told that the triggering event was indeed Julia’s 19th birthday, that the information I had received previously was wrong (“And I don’t know who would have told you such a thing.”), and that yes, her policy would end on Saturday unless I jumped through all the hoops of re-application and the new application was reviewed and approved before then.  Fueled by fear, I did indeed jump and also, called the HelpLine at Health Insurance for All.  Tomorrow, morning I will, with the help of HIFA, call MassHealth once again and ask for the application to be expedited and decided upon.  With luck, what I faxed in yesterday after 3 p.m. will be sufficient for Julia to be re-instated. 

If not, Julia will be without health insurance for a month.

Because to buy private insurance, application and payment must be received by the 15th of the prior month.

It was the MassHealth information giver who affirmed that last fact yesterday. Then, why send termination notices out so late, I asked. “We don’t control the post office,” she answered.  But the termination was post marked January 24th. “Well, it happens.”


So, Julia is lucky.  She is lucky to have lived in two states, WI and MA, that have programs and services for people with disabilities. She is lucky to have a parent who could drop everything yesterday and spend the day gathering information, getting help and jumping through hoops. She is lucky to have a parent who has been researching the system for almost a year and who had read and understood the rules. She is lucky to have a parent who can figure out how to jump through hoops quickly. She is lucky to have a parent who will figure out a next step if tomorrow doesn’t go well.  Her luck will run out if she loses the services that are still pretty new and critical during this transition year. Then she will be lucky to have a parent who will scramble to figure out what to do next.

Yesterday, I was scared and angry.  Today, I wondered about all those Julia’s who are not lucky.

30 January Update:

This morning I called the HelpLine at Health Insurance for All once again, explained my plight and asked them to conference call with me to MassHealth.  The counselor agreed and called.  Interesting, HIFA must have a different MassHealth number than is available to the public because we had a very short wait to be connect to an enrollment agent.  It took a long time– at the very least a number of held breaths and shaky exhalations– for the agent to check on Tuesdays hoops.  She found everything she was looking for, all in order. Two more breaths and she said that Julia’s coverage will continue.  I asked a few questions about billing and the possible change of number and it was done.

Sitting at my desk, the warm phone black now, I feel quite heroic.  As if some great battle against some huge dragon has fought and won.  However, it was a mere 12 minute phone call during which I imagine boxes were ticked and ticks added up for a positive answer.  Then again, it was probably even less than that.

And I am grateful for the HIFA help and for all those who held their breaths with me during the past 48 hours.


One thought on “fear

  1. I’m sorry you got so much misinformation. I now work for Wisconsin Medicaid/Forward Health. Honestly – the system is almost as confusing to us as it is to you. We are always frustrated when we don’t have sufficient information to successfully help members. As to the special number – it’s the same number; when we connect a member we get moved to the front of the line. I guess there is some magic there!

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