Caregiver Stipend Program for Recent Veterans Creates Confusion for VA Health Providers, Beneficiaries

by U.S. Medicine

August 12, 2011

WASHINGTON — While VA has quickly rolled out its new caregiver-assistance program for Iraq and Afghanistan veterans, speed may have come at the expense of transparency and consistency. Or, so said caregivers who report trouble understanding the limitations of the act, as well as disparities in how VA determines the size of the caregiver stipend.

VA providers, meanwhile, said their hands are sometimes tied by the strict eligibility provisions of the program, which excludes, among others, patients who are ill but not injured. In addition, providers say they are frustrated by their inability to provide similar support to caregivers of geriatric patients.  

Delays in Implementation

The Caregivers and Veterans Omnibus Health Services Act was signed into law in May 2010. It authorized VA to establish a wide range of new services to support certain caregivers of eligible OIF/OEF veterans. This included education and training, healthcare coverage for caregivers, respite care, mental health services and counseling, plus a monthly stipend for caregivers who curtailed their own careers or quit working entirely to care for their friend or family member.

The law required VA to create a host of new regulations, most notably ones determining eligibility of veterans, designating and approving caregivers and providing stipends.

When VA returned with an implementation plan — one that would roll out the new benefits during the summer of 2011 — Congress was not pleased. VA’s proposed rules for implementing the new benefits shut out many of the veterans that the law was designed to help, legislators said. While Congress had expected about 3,500 veteran families to be eligible under the act, VA’s regulations would allow only about 850 to qualify.

This resulted in a number of angry messages from legislators to VA officials, and in the inevitable questioning of VA officials on the Caregiver Act during Congressional hearings, regardless of the topic of the hearing. In March 2011, a bipartisan group of legislators from the Senate and House sent a letter to President Obama urging him to block VA’s plan to implement the new program until it was redesigned to fit with the law’s original intent.  

In response to this pressure, VA changed its eligibility requirements and expedited the implementation of caregiver benefits by publishing an Interim Final Rule (IFR) on May 5, 2011. The IFR allowed VA to accelerate the rule-making process and to immediately implement the program prior to the consideration of public comments and the issuing of a final rule.

As a result, caregivers began applying for benefits in May, with the first stipends being sent out last month. As of mid-July, 1,000 caregivers had applied for support, and 176 had received stipends totaling $430,000

Legislators remain concerned that the plan does not go far enough, and that there are inconsistencies in who determines the extent of the benefits for each caregiver, or if they are given at all.

Caregiver Stipend Program for Recent Veterans Creates Confusion for VA Health Providers, Beneficiaries Cont.

Determining Eligibility

While Schultz was able to get Steven’s VA care providers to sign off on her application for caregiver benefits, she knows of fellow caregivers who have had extreme difficulty. “One veteran’s wife applied, and the VA social worker couldn’t get his primary-care provider to sign off on it. This was a veteran who has a TBI, as well as a spinal cord injury, and she has been his caregiver for several years,” Schultz said. “That’s the type of disparity that worries me and other caregivers.”

It also worries veterans service organization. Anna Freese, director of the warrior-support program at the Wounded Warrior Project (WWP), testifying at the same hearing, described similar disparities in approving applications. A WWP survey of caregivers applying for assistance revealed wide variability from facility to facility in VA regarding who makes the determination of whether a veteran and their caregiver are eligible and how that decision is made.

“For example, one caregiver has provided almost constant care and supervision for her husband who has suffered TBI,” Freese said. “Eleven days after applying for assistance, a VA nurse practitioner contacted her to advise her that the application had been denied. This decision was made without reviewing the veteran’s medical records or consulting with his care team. The nurse concluded on the basis of his compensation and pension-exam records that he did not need assistance in performing the activities in daily living.”

That situation ended favorably, but only because another VA employee took the initiative and intervened, Freese said. “The rule is altogether vague in how clinical eligibility determinations should be made and who should make them.”

Caregiver coordinators — those who oversee the program at individual facilities — testified at the hearing that those examples do not describe the process at their facilities and that they have tried to create a team approach that includes the caregiver in the process.

“In Syracuse, all veterans that have applied have been closely case-managed by our OEF/OIF team,” explained Cheryl Cox, caregiver support coordinator for the Syracuse VAMC. “It’s not required, but once we receive the initial application, the coordinator contacts the caregiver to set up the initial assessment within two days. When I do that, I talk with the caregiver about what they’re dealing with and bring that back to the team to help assess clinical eligibility.”

Mary Fullerton, caregiver support coordinator for the North Florida/South Georgia VA Healthcare System described a similar approach. “Most of the providers know the caregivers, and they’re very open to them being a part of the decision-making process.”

The program does have some significant gaps, however, both Cox and Fullerton said.

“The biggest challenge for me, because I want to support all caregivers, is the illness versus injury question. Right now, the program excludes illness and so it excludes caregivers that provide significant amounts of care to our veterans,” Cox said.”

For Fullerton, the gap involves VA’s older population, who are not eligible for the OEF/OIF-specific caregiver support program. “I have worked with this geriatric population of veterans, and these families have been providing the same levels of caregiving. It’s very frustrating that this program is not open to them,” she said.

According to VA officials, they are aware that there are disparities in how the program is being handled facility-to-facility, and they are taking steps to rectify them. “We did provide and do provide extensive training to those in the field who are implementing the actual program, explained Deborah Amdur, VA’s care management chief consultant. “And we have heard the concerns and take them very seriously that we need more transparency as to how decisions are made. We are reminding our support coordinators that they are sharing very openly with families and veterans the basis on which decisions are made.”

VA will also begin sending a letter to caregivers when they are notified of their eligibility, explaining how that determination is made. VA is also trying to make caregivers aware that there is an appeals process and that they are supportive of individuals appealing decisions, Amdur said.

In response to concerns about reliability among eligibility determination, a quality-assessment team looked at 50 records of veterans who applied for caregiver benefits, essentially putting them through a second eligibility process to determine consistency. Of those, 84% were consistent with the previous determination and 16% were inconsistent. But all but three of those were inconsistent in favor of the caregiver.

Of the three that were scored lower during the initial eligibility determination, there was one that assessors had serious concerns with and asked for a reevaluation.

It might be too early in the rollout process to determine whether inconsistencies are due to the speed of the implementation, or of changes that need to be made in the regulation. The public comment period on the interim rule closed on July 5. VA will examine the comments before determining whether to keep the regulations as they are or adjust them.

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Caregiver Stipend Program for Recent Veterans Creates Confusion for VA Health Providers, Beneficiaries Cont.

Disparities in the Rating Process

Debbie Schultz, of Friendswood, TX, was one of the first caregivers to apply for benefits from VA in May. Her son, Steven Schultz, USMC (ret.), was injured by an IED in Fallujah in 2005. She told the House VA Subcommittee on Health that she and her and her husband, who had a 15-year old son and an 18-year-old daughter, were preparing to become empty-nesters. Instead, they became Steven’s primary caregivers.

Their son suffers from the effects of a severe TBI and profound weakness on the left side of his body. He also has difficulty understanding people and being understood. Debbie Schultz, a special-education teacher, left the work force to stay at home with Steven. She applied for caregiver assistance on May 9.

In her testimony, Schultz gave VA credit for streamlining the application system. Between May and July, she was approved for the program and had already received her first stipend check. “But VA must make sure that its decisions are fair and appropriate, and not just fast,” Schultz said. 

“There are flaws in the rules VA published in early May,” she said. “The stipend is a good example of this. For many families whose finances are tight, the stipend is very important. But it’s clear to me that the rules determining the stipend need work. I know a veteran who suffered the same injuries as Steven, but made a better recovery physically. Though he has far fewer physical limitations, he still has PTSD and TBI. But his family only gets a stipend that amounts to 10 hours a week.”

VA’s methodology for determining how many hours of care was needed scored her son appropriately high because he had both physical and cognitive issues. If his physical problems had been absent, he would have scored lower, Schultz said.

“The fallacy in this methodology is that a veteran with TBI whose extreme lack of judgment, for example, makes him a safety risk is not just a safety risk for 10 hours a week,” she noted. “Something is badly wrong with the methodology that determines a veteran who is a safety risk, whether for suicidality or is a danger to others, needs only 10 or 25 hours of care a week.”

Schultz said, based on her stipend check, it appears she was qualified for the near maximum 40 hours, but that is not enough.

When her son first returned home, he needed care 24 hours a day, she pointed out.  While her son now sleeps through the night without assistance, she and her family spend much more than 40 hours a week caring for him. Schultz does have some hope that the respite care provided under the new law will bring relief that previous experience with respite care did not. “Prior to this law, nothing was available for this young age veteran who is able to do things but needs help in everything he does. The at-home assistance was not age-appropriate, and it was not reliable. It was set up for a geriatric population,” Schultz said.

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