Carpenter Asks For A Chance

UPDATE: We were informed on Saturday, May 7th, 2005 that the state had granted Jimmy Carpenter and his family an exception. This is an example of what can be done when you won't take "No" for an answer!

"All Jimmy Carpenter wants to do is live the same life everyone else does and his parents have the capacity to offer him that opportunity."

Those are the words of Ken Ervin, a West Virginia Advocate who is fighting for the rights of 27-year-old Jimmy Carpenter, his mother, Lisa Davis, and his stepfather, Mikel “Mike” Davis.
State and federal guidelines, Ervin claims, curtail Jimmy’s right to receive the help he needs, even though state and federal officials familiar with his story have endorsed waivers that would allow him to receive the therapy he needs.
Here is Jimmy’s story:

After graduating from Tyler Consolidated High School in 1996, Jimmy Carpenter left his home in Paden City to return to Daytona Beach, Florida where he loved to surf and started his own landscaping business to help save money for college. Living with Lisa’s parents, Shirlene and Hugh Mendenhall, Jimmy was a healthy, vibrant 23-year-old aspiring to one day be a lawyer.

Hours before terror struck the heart of America on Sept. 11, 2001, terror struck the hearts of Lisa and Mike Davis when Lisa’s father called to tell her Jimmy had been in a terrible automobile accident, and that she should come quickly.

Jimmy was critically injured when he was hit by a man previously convicted of drunk driving. Although Richard Lipsky had been drinking that night, he wasn’t legally drunk during the early morning hours of Sept. 11, 2001. He’d had two DUI arrests in 15 months and was scheduled to stand trial on the second offense Nov. 5. That would never happen — apparently distraught by a broken marriage and a dependency on drugs and alcohol, Richard Lipsky took his own life on Oct. 12, 2001.

Jimmy survived the accident but was left in a coma with brain injury, spinal cord injury, broken ribs, collapsed lungs, and a shattered spleen. Doctors described Jimmy as being in a persistent vegetative state, with little hope of his former life ever reappearing.

Lisa Davis tried to fly to Florida that fateful morning, but the tragedy that was occurring in New York City, Washington, D.C. and a rural field in western Pennsylvania closed down the Charleston, W.Va. airport. Instead, Lisa and Mike were forced to drive to Florida to be with Jimmy at the Halifax Medical Center, relying on their faith that he would still be alive when they arrived.

For a month, Jimmy remained in a coma with Lisa and Mike by his side. Prayers were lifted, and on Oct. 11, he woke up. Prayers were answered, and the road to recovery began.

It would be a long road, one that kept the family in Florida for 21 months.

“We’d done a lot of physical therapy with him in Florida, mostly on an outpatient basis,” said Lisa. “With outpatient therapy, 70 percent of the work must be done by the caregivers. He had to relearn how to speak; he had to learn everything over again. I even had to teach him how to say mom.”

Lisa never gave up hope, even when doctors were trying to convince her he should be institutionalized.

“I spent more time with him than anyone else,” said Lisa. “I learned what I needed to do to care for him and observed things the doctors didn’t see. They wouldn’t believe me when I said he’d walk again.”

Standing in Jimmy’s room, doctors gave Lisa one last chance to agree to place her son in an institution. If she refused, they told her, she would be forcibly taken from the room and Jimmy would be transferred out of the hospital into a home.

“You know what happened when they told me that? Jimmy said to the doctors, ‘Merry Christmas and God bless you!’ That got their attention, and a few days later, they moved us into therapy,” said Lisa.

Mike, a union carpenter, made special equipment to aide in Jimmy’s therapy. A tilt table he built allows Lisa and Mike to stretch Jimmy’s limbs, forcing him to use muscles paralyzed by the accident. A special walker allowed him to take his first steps, with the help of Lisa, Mike and friends.

Although painful, Jimmy progressed to where he was able to walk 50 feet with a cane and someone pushing his left leg forward. He’s regained partial use of his right side, but the left side of Jimmy’s young body remains paralyzed. Once in a persistent vegetative state, Jimmy can now feed himself and is able to talk and joke with Lisa, Mike and his friends.

“I don’t want to give up hope,” said Lisa. “With the strides being made in technology, we want to continue his exercise program and maintain him so that when the opportunity arises, he might have the chance to regain a decent part of his life back.”

Donations by friends and family, and sacrifices by Mike and Lisa, have allowed Jimmy to continue his therapy. They’ve purchased a handicapped vehicle, and a $30,000 baclofen pump that corrected abnormal involuntary contractions of his muscles and allowed a reduction in the amount of medication Jimmy needed.

With fewer medications, Jimmy was better able to concentrate on his therapy and his future continued to be brighter.

In May, 2003, Jimmy, Lisa and Mike returned to their home in Paden City. The Davis’ had struggled in Florida to meet Jimmy’s needs financially, but were fortunate to find other resources to supplement social security and Medicaid benefits so they could continue to care for Jimmy.

About a year after moving back to West Virginia, however, Mike was forced to return to work so the family could avoid financial disaster. Ironically, the training he received in Florida to help him care for Jimmy landed him a job in West Virginia caring for patients with needs very similar to those of his stepson.

In early 2004, Lisa was given an Aged and Disabled Waiver from the West Virginia Department of Health and Human Services that allowed her to be a paid care provider for Jimmy for 155 hours a month. But with Mike working, Lisa could only do limited therapy with her son.

“Jimmy weighs 200 pounds, and the exercise routine he needs requires a strong person to help,” Lisa explained. “Mike and I balanced each other in caring for Jimmy; and his exercises are critical to his well-being.”

As Lisa was unable to provide much of Jimmy’s therapy by herself, he began to regress. It was a scenario Lisa feared, but she persisted in seeking ways to help her son.

On Dec. 8, 2004, Jimmy was approved to receive personal care services in his home. The Davis’ thought their prayers were answered: Mike could work outside the home and someone trained in the care of patients like Jimmy would be allowed to come to the Davis’ home to help Lisa with her son.

“Since Dec. 8, they’ve had six different employees come into their home,” said Ervin. “When people show up, they’re not qualified to help Jimmy. No one has been sent into the home who has the necessary skills to help with his disabilities.”

One worker dropped Jimmy while trying to transfer him from his wheelchair to his bed. Three other employees left after working only a few days, each filing a workers’ compensation claim with the state.

In February, frustrated by the inexperience of the caregivers provided for Jimmy, Mike quit his job so he could be home to help Lisa.

Lisa and Mike applied for a waiver that would allow Medicare to pay Mike as a care provider for Jimmy. They reached out to state officials and Sen. Larry Edgell (D-Wetzel) for help. Edgell supported their request, offering to discuss the family’s situation with DHHR Secretary Martha Yeager Walker. He talked with federal officials in Philadelphia.

Eugenie P. Taylor, acting commissioner of the Bureau for Behavioral Health and Health Facilities, wrote a letter in support of the waiver request.

“Mr. Davis sounds like he could be a most appropriate caregiver and the many hardships the family is facing might be at least ameliorated if he was approved to receive reimbursement from the Aged and Disabled Waiver Program,” Taylor wrote in his letter. “I would appreciate it if you would give due consideration to the exemption the family has requested.”

Although the Davis’ have not yet been notified directly, they’ve learned from Edgell and U.S. Senator John D. Rockefeller IV (D-W.Va.) that the DHHR has refused the waiver request.

“It’s a tragic situation,” said Edgell. “The law says Medicare can’t pay a family member to take care of another family member. At some point, the government has to say there are things that just can’t be done.

“It’s a heartbreaking case if you care anything at all about people,” Edgell continued. “We should be able to make Jimmy’s life as comfortable as possible, and it’s sad that the people they’re sending into the home to help aren’t qualified.”

“We believe federal guidelines allow Mike to provide the service, but the state regulations won’t permit it,” said Ervin.

With Ervin’s help, the Davis’ will request a fair hearing before the DHHR to appeal the waiver denial and will file a complaint with the U.S. Office of Civil Rights. They will make another appeal based on the Olmstead decision, a U.S. Supreme Court ruling issued in June 1999 that said Americans can’t be forced into institutional care without good reason and that states must use Medicaid money for assistance to keep people in their own homes and communities.

“We feel we have the evidence and documentation on our side,” said Ervin “It’s incredible how dedicated Lisa and Mike are. With the three workers’ compensation claims that have been filed, it’s not fiscally responsible not to allow Mike to be the care provider.”

Frustration is running high at the Davis household in Paden City as time slowly passes by.

“The bottom line is that the more time that ticks away, the more time we lose,” said Lisa. “We’re fighting to get our routine back, to continue what we were doing so we can help Jimmy.”

Listening in his wheelchair, wearing his beloved Steelers’ t-shirt and ball cap, Jimmy offers his thoughts on the situation: “I just want to stay home.”

Were it not for the lack of a simple waiver, perhaps Jimmy Carpenter could live the same life so many take for granted.