Sometimes you just can’t sit around, complain and do
nothing. So, when a fellow special needs
mama enlists help to share our story and what Medicaid cuts and caps will (are)
doing to your family, Mama Bear answers the call.
Paul and I are heading down to meeting this afternoon to discuss the
important topic with some of the aides as Senator Rob Portman’s office. We are hoping that sharing our journey will
relay the importance of the support families like ours receive through
Medicaid. We are not free-loaders, lazy
or stupid yet we relay on the aid of public funding to keep our family
together. I am not ashamed of it either
because our boys deserves proper care and our girls deserve a some sort of
normalcy.
This is the letter I will leave behind …
Dear Senator
Portman,
My name is
Andrea Rozzi-Gautraud and I am mother to 4 children (ages 11, 10, 7 and almost
6). Our youngest child, Paul, suffered a
severe brain injury around the time of birth due to an interruption of blood
flow to his brain occurring from an unknown problem with his placenta. Paul defied the odds when the doctors told us
that his condition was not compatible with life, yet he continues his fight to
this day. He struggles with many
conditions due to his brain injury and in turn, the rest of the family
struggles as well. Paul has severe
cerebral palsy, is non-verbal, visually impaired, has a sensory processing disorder,
problems with sleeping, feeding tube dependent, has a seizure disorder and many
other diagnosis’. He depends on others for every single bit of his care. He also suffers from irritability and anxiety
when going to unfamiliar places which makes going out both physically and
mentally stressful.
My husband’s
job as a pilot leaves my alone with all 4 children 18 days and nights per
month. Paul receives Private Duty
Nursing through our private insurance and when that runs out, Medicaid, in the
past, has picked up the remaining. This
allows me to work a part-time job to help make ends meet and my other 3
children to participate in some “typical activities” and know that my son is
being properly cared for. However,
Medicaid has just recently notified us that they no longer will cover his
nursing care even though Warren County and all his doctors and specialists have
recommended they continue the care.
The States
denial of Paul’s doctors and Warren County’s request to continue Paul’s private
duty nursing has created and immense amount of stress on our family. It feels like I am drowning and the State of
Ohio just handed me cinder block. This
devastating situation leaves our family utterly terrified of where Medicaid
cuts will leave us in the future.
I fear that
not providing support to hard working, struggling families will force loving
and devoted parents to put their children in homes or give up custody because
of the sense of hopelessness that denying this type of care produces. As these children grow, unfortunately, I am
learning first hand that life becomes more difficult and additional help is
required, not cuts and caps. Outcomes of people who can age in place with disabilities with proper
medical supports are significantly greater than reverting to an institutional
system. Medicaid waivers also need more
funding as waitlist tend to be significantly long.
I always say
that loving and accepting Paul as he is, is the easy part. He is the light of our lives. The fight for the things he requires is what
makes this life so incredibly difficult. Cuts mean you are
penalizing people who cannot care for themselves and whose families are already
working their hardest to provide everything they can for their family member
with a disability.
I hope you remember
our story and daily struggle when it comes time to putting a Healthcare Bill together that will be good for ALL Americans.
Paul and his family are counting on you.
Best
Regards,
Andrea Rozzi-Gautraud
