The Arc’s Medicaid Stories Campaign

I’ve posted a lot about Medicaid in the last few days.   There’s so much more to our lives than battling to maintain these essential programs.  But, Koan (and all disabled people) really do need advocates to step up and speak for them.  This is going to be a long week for our family.  Right now (on Monday), the outlook is pretty good.  But, the voting deadline is Saturday.  There will be lots of pressure and a lot of tweaks to the bill before this is over.  So, it will be hard to hold on to the dissenting votes.  Calls and letters will still be necessary all week. Please call/contact your state’s senators — again even if they oppose the bill — to voice your concerns.  Below is a letter I submitted to the national chapter of the Arc about Koan’s Medicaid story.  These letters are going to be printed and hand-delivered to the Senate today.  Please stand with Koan this week and continue to put up the good fight!

Koan, my youngest son, has global developmental delays.  He is ten years old and doesn’t walk, talk, or feed himself.  No doctor or specialist has been able to tell us why these delays happened.  We named him for the answerless riddles or parables that Zen monks meditate upon to reach enlightenment.  We gave him this name before he was born and long before we knew he would face these types of challenges.  It is, of course, a very fitting name.   While it’s been a wild, wonderful adventure raising Koan, I do have some anxiety when I think about what his life will be like if the Cassidy-Graham Act would pass.  

The supports Koan and our family have received from Medicaid have made life manageable and ensure that Koan is safe and healthy.  In short, these systems have worked really well.    But, I’m deeply troubled by the almost certain disruptions to these essential services in both the immediate future and in subsequent years if Cassidy-Graham is passed.  Here are just a few of the  services we rely upon that come from Medicaid and would be in jeopardy:  

Medical care:  Koan has a seizure disorder and Medicaid provides access to neurological specialists, treatments, and prescription medication.  Also, because Koan is not mobile and non-verbal, he’s dually incontinent.  We can’t run out to the store and buy diapers for a 10-year-old.  This product does not exist in the consumer market.  We need medical grade briefs to maintain a sanitary environment.

Community-based supports:  We rely heavily upon local organizations, like the Arc, to provide respite services and other quality of life experiences for Koan.  These experiences add richness and value to his life — they make it meaningful and a life worth living.  It’s been my experience that this is every parent’s most profound wish for their child — to live a happy, healthy, independent life.  Organizations like the Arc make this possible for people like Koan.  The respite services also make it feasible for my spouse and I work outside our home and maintain full-time employment.  I understand why someone without a disabled person in their life might view community-based services as “nice to have” but not a “need to have”  service.  However, after living with a disabled person for ten years, I can emphatically attest that these supports are absolutely essential.

Mobility supports:  Koan does not walk now.  But, he might someday.  We have a Convaid wheelchair we use to move him about.  We also have a walker to practice guided walking.  He needs AFOs (custom, form-fitting plastic leg braces) to help him support his weight when he stands.   The AFOs need to be adjusted every few months and replaced annually because he’s a growing boy.  All of these were appliances were funded by Medicaid dollars.

Therapy:  As I said earlier, we want Koan to be happy, healthy, and as independent as possible.  A person with his disabilities will need a lot of intensive, guided instruction and practice to make this happen.  So, we have him enrolled in physical therapy (to support mobility), occupational therapy (to assist with feeding and other manual tasks), and speech therapy (to enhance communication).  He receives all of these services at school and privately.  Cassidy-Graham would slash funding that schools for Medicaid and the severe reduction in overall Medicaid funding would endanger access to these crucial private therapy services as well.

Deep, overall cuts to Medicaid spending, block grants to states that provide less money and inadequate grow of monies over time, and per capita lifetime spending caps will put all of the essential services I listed above in immediate and long-term jeopardy.  Plain and simple: this is a bad piece of legislation.  To quote Gandhi, “A nation’s greatness is measured by how it treats its weakest members.”   Please do not support this bill.


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