The U.S. Department of Health and Human Services has launched a civil rights investigation into Kentucky's Medicaid program after a Lexington man's services were cut earlier this year, according to documents provided to the Herald-Leader.
Creasa Reed, the mother of James Reed, who is autistic, bipolar and mentally handicapped, filed the complaint in April after Medicaid cut her son's budget for in-home services, leaving the 60-year-old disabled mother and her 65-year-old husband to provide more hands-on care for James Reed.
The Reeds were providing 48 hours of care each week in their Lexington home for their 31-year-old son. Because of the cuts to services, the Reeds now have to provide 88 hours of care each week.
Without the additional help, the Reeds say they might have to put James Reed in an institution.
"The last two places he was at, the state shut them down because there were so many problems," Creasa Reed said. "He is at imminent risk of out of home placement."
According to a June 12 letter that the U.S. Department of Health and Human Services Office for Civil Rights sent the Reeds, the office will be investigating whether state Medicaid officials acted appropriately when they cut James Reed's services without considering that Creasa Reed has a disability and might not be able to provide 88 hours of care.
Creasa Reed has a debilitating medical condition called fibromyalgia, for which she has received Social Security disability benefits since 2003.
Michael Robinson, a spokesman with the Department of Health and Human Services in Washington, D.C., said the office would neither "confirm or deny" the civil rights investigation.
If Kentucky's Medicaid program is found in violation of civil rights statutes, the office will seek corrections. If the state does not comply, the matter could be turned over to the Department of Justice or the Department of Health and Human Services could terminate federal funding to the state.
It is unclear how long the investigation could take. If the Office of Civil Rights sides with the Reeds, their funding also could be restored, Creasa Reed said.
Cabinet for Health and Family Services officials said Friday that they have not been notified of the civil rights investigation and could not comment on a specific case.
Marsha Hockensmith, executive director of Kentucky Protection and Advocacy, a state agency that advocates for the disabled, said a civil rights investigation is rare.
The Reeds adopted Jim when he was3 years old through the state's special needs adoption program. He has had more than 15 hospitalizations and has been physically and sexually abused in previous institutional placements, the Reeds say.
Under a new Medicaid program launched in 2007, called consumer-directed-option, the Reeds have been able to provide care for James Reed in their home.
"We loved it," Creasa Reed said. "We thanked God for it. We were finally able to take care of Jim at home."
That care includes staff to be with James during the day and at night, as well as other programming.
Earlier this year, the Reeds were notified that Medicaid was going to reduce their annual budget for services to $63,000 from about $99,000. The Reeds appealed the decision through the Cabinet for Health and Family Services, but their appeal was denied. The Reeds then filed a complaint with the Office of Civil Rights in April.
The Reeds argue that the law is on their side. Under a 1999 United States Supreme Court case, commonly referred to as the Olmstead decision, the unnecessary institution of individuals with disabilities constitutes discrimination under the Americans with Disabilities Act.
Although $100,000 for services might sound like a lot, the Reeds say, it can cost much more to house a person in some of the state's institutions for the mentally disabled. Some can cost more than $1,000 a day.
The Reeds are not alone in their struggle to find additional dollars to keep their adult child at home.
Ruth and Billy Brown are in their 70s and care for their 26-year-old son Zenos, who has Down syndrome.
Zenos goes to a treatment program during the day. But the Browns, both of whom have suffered a stroke and are disabled, say they have tried without success to get more services to help them take care of their son when he is at home.
"I have been blessed with nine wonderful children," said Ruth Brown. "But even they can only do so much."
Hockensmith, with Kentucky Protection and Advocacy, said it's impossible to tell how many disabled parents are caring for their children statewide.