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Paden City parents fight to care for their son

By Staff | Apr 15, 2015

Jimmy Carpenter gets to experience a zipline ride—something his parents say a state agency-provided caregiver would never have facilitated.

Ten years ago the Wetzel Chronicle covered the uncertainty Lisa and Mike Davis of Paden City faced when presented with the possibility that they may not be able to care for their own son.

At that time, thanks to state representatives, public outcry, and the power of prayer, the Davises were able to keep and care for Jimmy at home. However, as Lisa best put it in a letter to the state’s Department of Health and Human Resources, the nightmare “is again back to haunt us.”

Jimmy’s trials began in 2001. After graduating from Tyler Consolidated High School in 1996, he left his home in Paden City to return to Daytona Beach, Fla., 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 the Terror Attacks of 9/11, terror struck the hearts of Lisa and Mike Davis when Lisa’s father called to tell her Jimmy had been in a terrible accident and she should come quickly. Jimmy was critically injured when he was hit by a man who had been drinking and driving.

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

Because the airports were shut down, Lisa and Mike drove to Florida to be with Jimmy at the Halifax Medical Center, unsure he would even still be alive when they arrived.

Jimmy remained in a coma for a month. Prayers were answered on Oct. 11 when he woke up. Jimmy’s long road to recovery began and Lisa and Mike stayed in Florida for 21 months.

“We’d done a lot of physical therapy with him in Florida, mostly on a an outpatient basis,” Lisa stated during a 2005 interview with the Wetzel Chronicle.

“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.”

Doctors attempted to convince Lisa to institutionalize Jimmy.

“I spent more time with him than anyone else,” Lisa stated during the 2005 interview. “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.”

Doctors gave Lisa one last chance to agree to place her son in an institution. If she refused, 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, Lisa noted.

Mike, a union carpenter at the time, made special equipment to aide in Jimmy’s therapy. A tilt table he built allowed 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. Although painful, Jimmy progressed to where he was able to walk 50 feet with a cane and somewhat pushing his left leg forward. He also regained the ability to feed himself and was able to talk and joke with Lisa, Mike, and his friends.

Donations by friends and family, and sacrifices by Mike and Lisa, allowed Jimmy to continue his therapy. They purchased a handicapped vehicle and a $30,000 baclofen pump that connected 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 Paden City. The Davises 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, Mike was forced to return to work so the family could avoid financial disaster. The training he received in Florida to help him care for Jimmy landed him a job in West Virginia caring for patients with needs similar to his stepson’s.

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, she could only do limited therapy for Jimmy as Lisa was unable to provide much of Jimmy’s therapy by herself. He began to regress.

On Dec. 8, 2004, Jimmy was approved to receive personal care services in his home. Mike could continue to work outside the home and someone trained for the care of patients like Jimmy would be able to come to the Davis’ home to help Lisa care for her son.

However, within four months, the Davises had gone through six different employees. She said they were unqualified to help Jimmy. One worker dropped Jimmy while trying to transfer him from his wheelchair to his bed. Three other employees left after working a few days, each filing a worker’s 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.

The Davises applied for a waiver that would allow Medicare to pay Mike as a care provider for Jimmy. They reached out to then State Senator 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.”

This request was later granted, albeit two years later. Life went on fairly smoothly for the Davises since that time. They were able to stay at home and care for Jimmy, who thrived with the support of his loved ones and familiarity of home.

Just a few weeks ago, uncertainty has reared its ugly head once more. A letter received by mail has alerted Lisa to the possibility that Mike and herself might be unable to care for Jimmy, and thus Jimmy will be unable to stay home.

Lisa states that about five years ago, the state appointed Mike and herself each as power of attorney and guardian. “Now, the state says the guardian and power of attorney cannot be the caregivers,” Lisa explains.

The federal government pays the state a set amount of each case. “Jimmy, being a Class D, gets more than a Class A. Then the state pays for what the agencies bill them for the hours worked, supposedly. Basically we turn hours into them and they do the billing. The WV DHHR is our threat,” said Lisa. “They want to reverse the decision of 10 years ago to not allow parents like us to care for their children.

“They are playing with words to get this back to agencies, so only they can care for our children and family members. This makes the owners of these centers/agencies rich,” she asserts. “The (waiver) program of my husband eliminates all the agencies/centers so the amount given by the federal government goes to us, the people who are breaking our backs to give our families the best care possible.

“The agencies/centers lobby for the change because nobody checks to see if the girl shows up to work or not. I’ve gone 13 days without anyone, and when I approached the matter, I was told that someone was in my home, my son just doesn’t remember because he has head trauma. I was here taking care of him,” Lisa adds.

“We saved the government $100,000 a year on Jimmy, easily, by keeping him at home,” Lisa states. “We do all his transportation, doctors visits, outings, and more.”

Lisa has recently written a letter to the DHHR concerning the situation. “It has been brought to our attention that the state is considering reversing the fact that we can no longer be caregivers because we are guardian and power of attorney,” she writes. “This is exactly what the state required of us, plus we had to switch our agencies. Now you want to change it back to only the agencies can be caregivers.”

Caregivers from agencies cannot assist with exercise or give medication, she added.

Lisa notes in her letter that Jimmy is currently being given the best care “we can provide.” She states that no drug testing is given by agencies.

“Why does it matter who takes care of Jimmy?” she writes. “He has head trauma (making him sometimes difficult), spinal cord injury, brain stem injury, paralysis on the left side, groshong catheter, colostomy, super pubic catheter and speaks low, or too fast. We understand his every need, having been with him since his accident on 9-11-01 when he was T-boned by a man drinking and driving. The experience of caregivers matters greatly.”

In her letter to the DHHR, Lisa included a listing of experiences herself and her husband have encountered from the agencies.

Lisa notes that one girl was sent to the Davises who had her own children taken from her by the state for neglect. Furthermore, Lisa claims that one nurse was caught three times for drug-related offenses. “We switched agencies because we were still required to let her into our home to care for Jimmy, which meant she handled his medications.”

In her letter Lisa further noted that when the Davises find a caregiver for Jimmy. “We do a trial run with them and then place them with the agency, and they will take them from us and send them someplace else. If they refuse to go more than three times, they were dismissed form employment. We can’t afford to pay-out-of-pocket. The agency knows if we train them, they can work any place because Jimmy is a Class D, meaning total care, plus some.”

“I could go on, but I hope you have a picture of why the caregiver matters and the agencies here have proven without a shadow of doubt they care not about us or his wellbeing. These agencies are the ugliest thing that I’ve seen, they are without human compassion,” Lisa states.

She continued, “The system as you want to return to is broken badly! The Olmstead decision, a U.S. Supreme Court ruling issued in June 1999 says that 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 have tried it the state’s way, the old way, 10 years ago. We fought with everything we had to get this program to the place it is now with so much help from all who believe as we do, there is much to improve. Backwards is not the solution. It can only bring devastation, despair, and hardship to many of us.”

“How this waiver began to change was our frustration with the inexperience of the caregivers provided for Jimmy. The condition most of them showed up in was high and reeking of alcohol. We reached out to state officials and Senator Larry Edgell. He supported our 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 for Bureau for Behavioral Health Facilities, wrote a letter in support of the waiver request.”

“After almost two years, with every denial letter, and everybody in the state contacted, they were sent to Mountain State Justice in Charleston. They had only one thing to say, and I quote, ‘You have the state by the a–,’ unquote.” The won the fight at that time.

“We are the only appropriate caregivers for Jimmy. We have a duel waiver because of the work of caring people, and the U.S. Supreme Court Ruling.

The DHHR is currently seeking public comments until April 17, 5 p.m. on the Aged and Disabled Waiver five-year renewal application. To help the Davises and Jimmy, they are asking you to let your voice be heard by accessing www.dhhr.wv.gov/bms/news/Pages/Aged-and-Disabled-Waiver-Application-Public-Comment-Period-until-April-17,-2015.aspx (If link does not work by clicking on it with your cursor, copy and paste the entire link into your web browser, including the “.aspx”)

If you do not have access to the internet or need accessible formats of the draft application, call 1-304-356-4892 or 1-304-356-4924

Comments can be made by e-mailing ADWComment@wv.gov or mailing WVDHHR BMS HCBS Unit, 350 Capitol Street, Room 251, Charleston, WV 25301

The Wetzel Chronicle reached out to Allison C. Adler, Director of Communications for the DHHR. The Chronicle asked Adler for comment, as well as inquired as to whether or not the changes were a result of business at the state legislature. Furthermore, the Chronicle inquired as to what kind of guidelines, at a state level, agencies must abide by to be able to care for an individual.

Adler provided the following statement from Jeremiah Samples, deputy secretary for the DHHR:

“The proposed changes to the IDD Waiver were made to align West Virginia with surrounding states, control spending, and provide the opportunity for more people to receive IDDW services. By making adjustments to the budget, we believe that we will be able to assist more state residents who qualify for these services, such as those 1,000 individuals on the waiting list. When considering modifications to the waiver, BMS compared other states’ IDD benefits to West Virginia’s waiver services. West Virginia’s IDD Waiver in total is more generous compared to other states.”

Samples added, “In 2014, the IDDW covered 4,534 individuals for a total expenditure of $385 million, with the average cost per member of $85,000. West Virginia appropriates $89 million a year from state general revenue funds for the IDDW program. For the last three years, the state spent more than $41 million in state dollars over its allotted budget. Since FY 2010, the amount spent for IDDW has increased by more than $110 million.”

In an accompanying press release Cynthia Beane, acting commissioner for the Bureau for Medical Services, encourages anyone with any questions or concerns to read the application and provide a detailed comment. “It’s very important for us to hear from the public as the comments received will be taken into consideration when the final recommendations are made,” she noted.

Delegate Dave Pethtel (D-W.Va.) was also approached for comment. Pethtel anticipated reaching out to the Chronicle Tuesday afternoon. Unfortunately this was past our press time.