Jennifer “Katie” Elledge can’t speak and has no use of her hands and feet. She can eat only blended or pureed food.
The 32-year-old Lancaster woman, who suffers from cerebral palsy and has a history of seizures, needs 24-hour care, which has been provided by her father and in-home care givers approved by the state Department of Disabilities and Special Needs (DDSN), according to court papers.
But in late 2009, Elledge’s father, Terry Elledge, was informed that because of state budget cuts, the number of weekly personal-care hours financed through Medicaid for his daughter would be slashed by 53 percent, to 28 hours from 60 hours.
Terry Elledge couldn’t convince either DDSN or the state Department of Health and Human Services (HHS), which contracts with DDSN to provide the services for his daughter, to reconsider the reduction in “Personal Care Aide II” hours.
HHS refused to hold an appeal hearing, contending that the cuts were program-wide and approved by the federal Centers for Medicare and Medicaid Services. The S.C. Administrative Law Court in January 2011 upheld HHS’ decision.
On Wednesday, the S.C. Supreme Court will consider whether Katie Elledge deserves a hearing. Her appeal contends that HHS’ actions violated federal Medicaid law, the Americans with Disabilities Act and the state Administrative Procedures Act.
The court’s five justices are expected to issue their ruling later, though they’re under no deadline to do so.
Besides the state lawsuit against HHS, Terry Elledge last August filed a federal suit against HHS Director Tony Keck on behalf of his daughter.
The case raises larger policy questions, such as whether some state budget cuts during the Great Recession went too far, and how the General Assembly sets its budget priorities.
Just several months before the program serving Katie Elledge was cut, for example, the Legislature saw fit in a rare, special session to approve a taxpayer-backed incentives package worth several hundred million dollars for aerospace giant Boeing to build its North Charleston plant.
A state legal group backing Elledge’s appeal says the budget cuts to her program likely will have a devastating effect on families statewide.
“These parents of adult children are being faced with the draconian choice of institutionalizing their loved ones or jeopardizing their own financial independence by paying for services their family members are entitled to receive due to their severe disabilities,” Patricia Harrison, attorney for the state chapter of the National Academy of Elder Law Attorneys, said in a friend-of-the-court brief.
“The decision of this Court is of utmost importance,” Harrison continued, “as it will affect thousands of citizens of South Carolina who have disabilities and their family members who are struggling to keep them at home.”
As of Dec. 1, 2009, there were 5,792 Medicaid recipients participating in the Mental Retardation/Related Disabilities (MR/RD) waiver program, former HHS Director Emma Forkner said in a May 2011 written statement in a federal court case involving a different plaintiff.
The waiver program allows those who are disabled to receive care in their homes or community-based facilities instead of being institutionalized.
Richard Hepfer, HHS’ deputy general counsel, declined comment when contacted by The Nerve last week, referring questions to an agency spokesman. Jeff Stensland, the department’s spokesman, said he would research The Nerve’s written questions about the total costs of the budget cuts, though he didn’t provide answers by publication of this story.
In court papers, HHS argued, citing a 2010 agency response to issues raised by Elledge’s attorney, that the state’s responsibility under the Americans with Disabilities Act (ADA) to provide Elledge with the “most integrated living situation” is “not boundless.”
“In fact,” Hepfer wrote in his legal brief, “the State having to change the Waiver limits to accommodate the Appellant amounts per se to a fundamental alteration of the Waiver program.”
In her appeal to the Supreme Court, Elledge contends that the ADA requires states to allow people with disabilities to live in their communities if they want and are able to.
“We’re fighting this battle to keep her in the community,” Sarah Garland St. Onge, a Columbia attorney with Protection and Advocacy for People with Disabilities Inc., a nonprofit legal advocacy organization that is representing Elledge, said last week when contacted by The Nerve.
Elledge has “never been in an institution,” St. Onge said.
“There’s not going to be an improvement in her condition,” added Greenville attorney Anna Maria Darwin, who also is representing Elledge on behalf of the Protection and Advocacy organization.
HHS in court papers said the agency has authorized 205 hours per month for Elledge in respite home care, up from 40 hours monthly at the time of her initial appeal. The program is similar to the personal-care aide program for Elledge in that in-home workers help her with daily activities, such as eating and bathing.
But St. Onge said that unlike the personal-care aide program, workers in the respite program are neither trained nor supervised by nurses. She also said respite services are harder to find in Elledge’s area, are not approved by her doctor, and also tend to have a higher employee turnover rate.
“The family has tried that,” St. Onge said about the respite program. “She can’t deal with a McDonald’s type of turnover. That’s not healthy.”
St. Onge also said taxpayers would pay more if Elledge is institutionalized, noting the annual cost in an institution would be about $116,800 compared to approximately $50,000 if she continues to receive in-home care services.
“Her services are much less expensive in the community,” St. Onge said.
Reach Brundrett at (803) 254-4411 or email@example.com.