MS State Action Day: Policy up close and personal

My husband Miguel was diagnosed with MS in 1994, and as you know, much of our time is spent dealing with all the daily issues of MS. So, attending the MS State Action Day in New Mexico last month was a wonderful opportunity and privilege. It was great to be among friends and allies, doing something positive for people affected by this disease.

Our group had the opportunity to sit in for the MS proclamation in both chambers – of course we sat up front and center with our orange scarfs and ties. I know how important it is for our legislators to see what MS looks like. It affects people in varying ways, and, “a picture speaks a thousand words.”

At times, we feel like we’re the only ones dealing with the issues of MS. It was a powerful experience to be able to meet with other people living with MS and other similar diseases. We were impressed and touched by the senators who spoke compassionately of friends and family members they know who have been impacted by MS. We valued meeting so many people and knowing they are doing their best to help those who are unable to advocate on their own.

For the last year, MS activists in New Mexico have focused on home modification tax credits to help make homes safe for people living with disabilities. Our family is no stranger to home modifications. Over the past 13 years we have added a ramp, widened our bedroom and bathroom doors, installed new door levers, put in grab bars (our bathrooms began to look like grab-bar central), installed a support pole for dressing...the list goes on and on.

Our biggest hurdle was an accessible shower. We tried the insurance route and were denied. We contacted Independent Living Resources, Catholic Charities, AARP and other agencies to seek financial assistance for a shower. It was an exhausting road, and some days I had to throw up my hands, take a breather and try again in a few days.

My good friend’s husband works for Home Depot (as does Miguel). Our friends reached out to Miguel’s store manager requesting a shower for Miguel through Home Depot’s community outreach program. Employees from Miguel’s store volunteered to take out our tub and install a shower!

The shower worked great for about a year, but it had a three-inch entry lip on it and Miguel eventually reached a point where he could not get his feet over the lip. After several falls and installation of more grab bars, Miguel was no longer able to get in and out by himself. This led to another need – assistance for showering.

Again, we reached out to our insurance company with a doctor’s referral for a home healthcare shower aid, which was denied because showering is not considered medically necessary. We appealed the decision twice but the denial remained. We currently pay out-of-pocket for this service.

I have seen the impact of getting involved. Our Senator’s support led to the Home Modification Tax Credit being approved to be heard this session – a huge victory! And, I was so impressed by how welcoming our legislators were. They want to speak to their constituents.

We’re already looking forward to next year’s State Action Day and continuing our advocacy work. I no longer feel so alone in this struggle. It’s been wonderful to see politics and advocacy in action, and to be involved in finding solutions for Miguel and others living with MS.  
Click here for more information about a State Action Day near you.
 
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Teresa

Teresa Melendez

Teresa and Miguel Melendez reside in Albuquerque, New Mexico, where they volunteer their time as MS activists along with their two daughters Carli and Chelsea. Miguel was diagnosed with MS in 1994. Their daughter, Carli Marshall, is a member of the Government Relations Committee and a District Activist Leader.

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    3 Comments

  • Cinnamon   Feb 5, 2016 11:26 AM
    Thank you sharing this story.
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    Diana0324  Feb 5, 2016 3:57 PM
    Thanks for all your devoted time and hard work for all of us!! God Bless!!
  • Lisa Scroggins   Feb 25, 2016 8:20 AM
    Hi Teresa, I have to comment on this: I have a sister with the exact name as you, and for a moment, I thought, "Teri (what we've always called her has a blog?!), and of course, I now know that it isn't her, LOL! I have MS, two of my sisters have MS, and our dear mom had MS. We have 3 other siblings who don't have MS. We all live in different states and even if we did live closer to one another, we've never been a close family. You'd think that this awful legacy might have brought us closer but it has not.

    I enjoyed reading your blog. I left my job on disability in November 2013. I could easily have qualified to do so a couple of years earlier, but I fought hard to keep working! I was surprised to find that your husband, Miguel, still works: good for him! It is unbelievable that SHOWERING is considered unnecessary. We are in the middle of renovating our bathroom and installing a curb-less shower. We are lucky to be able to afford it, but I worry about "What if I get even worse?! What else can go wrong?" I'm sure that you guys go through the same thing.

    Thank you for your post and thank you for your advocacy. As an aside, shortly after I went on disability, we moved far from my dad and two brothers, so I'm also dealing with 1. Knowing very few people and lack of familiarity with local resources 2. Feeling alone. I feel the need to be of service to others with MS, and your story is inspiring to me. Hopefully, I will get to the point where I can do more and connect with others dealing with the difficult and constant challenges of MS.