Under the version of Trumpcare being considered in the United States Senate, four million special needs children would be at risk for institutionalization due to cuts in the Medicaid programs that currently allow them to live at home with their families.
"Absent those supports paid for by Medicaid, the only option many families will have is institutionalization," Meg Comeau, a researcher at the Boston University School of Public Health’s Catalyst Center, told Kaiser Health News. "You’ll see kids going into pediatric nursing homes, kids not being able to be discharged from hospitals."
The Senate bill has an exemption aiming to protect some special needs children on Medicaid, but it would only apply to the 1.2 million special needs children who meet the SSI definition of "disabled," but not the remaining 3-4 million special needs children who receive Medicaid because their parents have low incomes.
"The potential consequences could be devastating," said Sara Bachman, who is also a researcher at the Catalyst Center, where they study improving insurance for children with special needs. "States on their own are quite variable on the ability to support the services kids need. The federal participation in the Medicaid program is in an essential underpinning. States are really going to be in a pickle."
The family of 13-year-old Aidan Long would likely be exposed to the devastation. Since he was four, Aidan has "suffered multiple daily seizures" which have sometimes continued for weeks.
"Aidan Long’s mother, Karen Nichols, put her photography career on hold to care for him. Still, the Longs need nurses to come to their home four or five times a week to relieve Aidan’s parents," Kaiser Health News reported. "Without that support, Ben Long said he would have to leave the communications nonprofit organization where he works."
If Trumpcare were to pass and Ben had to leave his job, the effects would extend far beyond their immediate family.
The communications nonprofit that employs Ben notes that he has contributed, "to the permanent conservation of more than 1.5 million acres."
4 million disabled kids kicked off #Medicaid & into pediatric nursing homes. @SenatorTester @SteveDaines VOTE NO. https://t.co/pbLcdcO0Al— Ben Long (@Ben Long)1499693659.0
My son, and millions like him, deserve to live at home, not hospitals. #HealthcareBill has different plans. #mtpol https://t.co/pbLcdcO0Al— Ben Long (@Ben Long)1499693735.0