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PARENTS OF DISABLED CHILDREN SUE INDIANA OVER MEDICAID CHANGES ADDRESSING $1
BILLION SHORTFALL

Starting July 1, the state will no longer reimburse family members or guardians.
Federal lawsuit filed against Indiana FSSA



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Author: The Associated Press, Chase Houle
Published: 5:58 PM EDT May 17, 2024
Updated: 5:58 PM EDT May 17, 2024


INDIANAPOLIS — Parents of two children with disabilities are suing an Indiana
agency in federal court over changes to attendant care services they say violate
the Americans with Disabilities Act and federal Medicaid laws.

A state agency overseeing Medicaid has reimbursed parents, guardians and spouses
for home care for years.



Starting July 1, the state will no longer reimburse family members or guardians.
The changes were proposed as a part of a cost-savings plan after the agency —
the Family and Social Services Administration or FSSA — underestimated its
Medicaid expenditures through July 2025 by nearly $1 billion.

"Beginning on July 1 of this summer, this option will no longer be available
because the FSSA has made the determination, effective that date, parents will
no longer be permitted to provide these attendant care services to their
children," said Tom Crishon, the legal director with Indiana Disability Rights.

Instead they'll get paid a daily rate.

Many of the parents Crishon says care for their children full-time. Families of
those children say the transition is mismanaged. The lawsuit alleges children’s
health and well being is at risk and asks the court to order the state to
continue reimbursing parents and guardians.

"They're going to be forced into having to find a second or third job to
continue to pay for their home, pay for their family's needs. It's substantial
enough, unfortunately, to have these families choose between continuing to care
for their child or drastically place their child into an institution," Crishon
said.

A spokesperson for the FSSA did not immediately respond to an emailed request
for comment. The state has said the attendant care services are where the
Medicaid program is “most acutely seeing an unanticipated growth in spending.”

The American Civil Liberties Union of Indiana and Indiana Disability Rights are
representing the families and the Indiana Protection and Advocacy Services
Commission in the lawsuit.



RELATED: Families impacted by FSSA’s proposed cuts meet with governor, FSSA
secretary

Families of children with a variety of complex medical needs have spoken out
against the changes since they were first proposed in January. The complaint
says the Medicaid payments help rural families who are far from facilities with
trained personnel and are a financial necessity for parents unable to work while
caring for their children.



Parents must provide constant care including feedings through a gastronomy tube,
operating a ventilator, monitoring seizure activity and administering
medications, the complaint says.

The FSSA has said it will work with families to find alternate care options, but
the lawsuit alleges the new reimbursements rates are not sufficient.



RELATED: Bloomington father speaks out about how proposed cuts to FSSA program
would impact his son with special needs

The complaint said the changes could result in some children who need constant
medical attention being placed in an “institutional environment," especially if
their parent must return to work to pay for the care. The lawsuit says parents
of children with such disabilities often prefer to care directly for their child
to suit their individual needs.

The mothers named in the suit care for a 6-year-old boy with rare genetic
disorder called cri-du-chat syndrome and a 10-year-old who has hypoxic-ischemic
encephalopathy, a type of brain damage.

According to the lawsuit, both children experience routine seizures that require
constant monitoring on top of other assistance. The 10-year-old was placed for a
period of time in a pediatric nursing home but had a “horrendous experience."

The lawsuit says the risk of being placed in institutions violates the Americans
with Disabilities Act requirement that state and local governments offer
services in people’s homes and communities.

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