If you meet Michelle, you will never forget her. This charming 15-year-old is just one of the 500 kids in the MFTD Waiver, and the inspiration for both live and virtual rallies this past week.
Michelle is diagnosed with Hallerman-Streiff Syndrome, a craniofacial syndrome that causes her to be legally blind, hearing impaired, of short stature, and require a tracheostomy and ventilator to breathe. Michelle is also a pianist, dancer, and good student who is thinking of becoming a doctor or teacher.
Family members, friends, and neighbors marched through Michelle's neighborhood holding signs and banners in support of the MFTD Waiver. The rally focused on the importance of keeping kids like Michelle at home, which is three times cheaper than institutionalizing them in hospitals.
Supporters called for funding of home care and continuation of programs like the MFTD Waiver to keep children where they belong, at home.
"What they don't understand is that my daughter is a thriving part of society," says Michelle's mother Mary. "So, what are we going to do? Put her in a little ambulance and just say, 'Bye, we loved you, but sorry we can't take care of you anymore'?"
Without the waiver, Michelle could not live at home. "Even a nurse, or a doctor--any human being--can't take care of a vent patient alone 24/7," said her mom. One of Michelle's long-time nurses stated, "I don't know how a parent could physically do that. Even if they had superhuman qualities and didn't have to sleep at night, to maintain that level of care for 24 hours is just impossible."
"If state legislators could meet Michelle and see how this Medicaid Home Care program has allowed this child to have a full life--thrive, go to school, get smart, enjoy life--I think they might change their tune quite a bit. She is a success story of the waiver program," said Mary, Michelle's mom.
To find out more about Michelle, view the video below, produced by Compassion for Kids, a campaign from Children's Memorial Hospital to preserve Medicaid for kids like Michelle.