Families of kids with disabilities want more mainstreaming of care
California families with disabled children are speaking out in favor of providing care in the most mainstream setting possible, in light of a move by the federal government to weaken protections meant to reduce the use of institutional care.
The Justice Department issued a memo in June saying states are not required to pay for services allowing disabled people to live at home and function in the community.
Jenny McLelland said her 15-year-old son James, who has severe breathing issues, is able to live at home and go to high school thanks to a nurse paid for by Medi-Cal.
"I don't think that care at home should be optional," McLelland contended. "Kids belong at home with their families. The system needs to provide care in a way that respects the rights of disabled kids and that keeps families together."
The Supreme Court ruled in the 1999 Olmstead decision isolating people with disabilities from their family and community is a form of discrimination violating Section 504 of the Americans with Disabilities Act. But the Justice Department argued for a narrower interpretation of the decision, saying it does not create an obligation for states to pay for community-based care.
Margarita Spataro, program manager at the nonprofit Family Voices of California, said Medi-Cal benefits allow her daughter’s father to stay home and care for 11-year-old Angelina, who has severe autism.
"Her being in an institution would totally change everything about her life, where she would not be a happy child or grow into a happy adult and be secluded from everyday people. That's not good for anyone," Spataro argued.
California's attorney general criticized the Justice Department memo as an attempt to undo settled law and said it remains illegal in California to segregate and isolate disabled people. However, the issue is in play nationally, after a judge, at the request of the Justice Department, vacated a ruling requiring the state of Florida to better staff a private duty nursing program helping medically fragile children live at home.
