In The Media

May 2012
By Nicole Fedeli-Turiano and Bill McManus

"Hands Down: There's No Place Like Home"

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The care giving dynamic in the Chesney Family from Altoona, Pennsylvania is becoming more prevalent as an increasing number of family members must balance the long-term living preferences of their aging parents or loved ones with their own demanding careers and family obligations.

Judy Weaver, daughter of Altoona natives Bob and Shirley Chesney, is embarking on her eighth year as her parents’ primary caregiver, helping to preserve their independence and unwavering desire to remain at home even as they require daily medical and personal assistance.

With an array of home and community-based services offered by Home Nursing Agency Healthcare, Weaver has maintained the balance fairly well. She’s quick to cite how the quality, cost-effectiveness and value-added benefits of private duty home care and adult day services should be the centerpiece of long-term care discussions when families weigh their options. “I want people to know the possibilities,” Weaver claimed.

“I love my life here, and I want to die here with my wife, Shirley,” said Bob Chesney, 79, gesturing to his surroundings in the modest homestead built by his father-in-law over 50 years ago in this historic railroad town.

Weaver promised her parents, both living with chronic health conditions including congestive heart failure (CHF) and chronic obstructive pulmonary disease (COPD), that no matter what the circumstances, she’d abide by their wishes. Upholding her pledge thus far, Weaver has undoubtedly experienced trials and tribulations along the way. The good times have exceedingly outweighed the bad, according to the upbeat 47-year-old single, working mother as she greets her parent’s spirited longhaired-dachshund, Brownie.

“Coming into this house and seeing both of them here is such a joy and provides such a sense of inner peace and satisfaction that’s hard to describe,” she said. “Married for 56 years, I know they are where they want to be and are surrounded by what – and whom – they love most.” 

Just as current and ongoing research from MetLife and AARP  indicates ‘home’ as the overwhelming preference of the elderly, the founders of Home Nursing Agency had an unequivocal belief almost 50 years ago that “aging in place” would also be the preference for many families like the Chesneys.

As a result, John Sheedy M.D. and Mary B. Kraft, both of whom died within weeks of each other last year, cultivated seed monies and formed stealthy alliances – many still intact today – to launch what is now known as Home Nursing Agency Healthcare. Built on the premise of whole person orientation and care for all stages of life, the agency provides post acute and chronic disease management, preventive services, and palliative/hospice care.   Currently headquartered in Altoona, the agency serves over 30,000 residents throughout 13 rural counties in central Pennsylvania.

A Visionary Approach to Care
In the 1960s, the notion of sending skilled health professionals out to meet the needs of the community was not commonplace throughout the Allegheny Mountain region. Fortunately, Sheedy, Kraft and several healthcare pioneers were innovative and courageous enough to move the frontier to develop one of the first home and community-based care providers in the state, capturing the attention of national caregiver advocates like former First Lady Rosalynn Carter and US Assistant Secretary of Aging, Josephina Carbonell, both of whom have visited the agency.

What the agency’s founders could not have foretold was how the rural region, decades later, would be in dire need for such services as it grapples with one of the nation’s fastest growing population of rural elders, 65 and older.

The state is now ranked fourth nationwide in the number of rural elders with 15 percent of the population in the 65 years old and older age group. This is projected to increase to 51 percent by 2030 at which time 25 percent of the state’s rural population will be 65 years old and older.   Moreover, could they have predicted that 7.8 million Pennsylvanians would now suffer from chronic conditions, representing over 60% of the Commonwealth’s population? 

Teaming up with numerous civic groups, community actions agencies like United Way, and Area Agencies on Aging [AAA] to provide services, the agency is also grateful for its partnerships with fellow NAHC members like Delta Health Technologies, also based in Altoona. “Delta was very fortunate to have partnered with Home Nursing Agency in the early 1970s.  The agency’s broad offering of services introduced our development team to the broadest possible view of care in the home and community setting,” said Keith Crownover, President/CEO of Delta Health Technologies. 

“We have worked with hundreds of homecare agencies, of all types, during our decades in home care but have never encountered an organization with the depth and breadth of services offered by Home Nursing Agency,” added Crownover.

Home Care & Adult Day Go Hand-in-Hand
“A seamless network of services including private duty home care, adult day service, and home health care have not only helped to alleviate the stress and ongoing demands of care giving, but they’ve also fostered my parents’ independence for many years,” said Weaver, whose parents also have a personal emergency response system.

According to Georgetown University’s Health Policy Center, the quality of life for people with long-term needs depends on their ability to obtain care in an environment and manner they prefer. With increased availability of community options such as assisted living and home care, there’s a growing awareness on the importance of giving people control over their care which helps to improve the quality of life. Seventy percent of adult day centers are affiliated with larger organizations such as home care, skilled nursing facilities, medical centers or multi-purpose senior organizations.

With the Chesney’s medication, medical devices, private duty home care and adult day services covered by private insurance and the state’s aging waiver, Weaver is striving to be excluded from an AARP national statistic which purports that 69 percent of working caregivers have to rearrange their work schedule, decrease their hours or take an unpaid leave in order to meet their care giving responsibilities.  

“You don’t know what it means for me to be able to go to work with regularity and to perform my duties well. Working in healthcare, there’s always pressure. Can you imagine the amount of stress and added pressures I would have to endure without the agency’s services?” Weaver quipped. Over the last few years, her father has suffered a stroke, heart attack and endured coronary artery surgery at which time his atrial fibrillation was also discovered. Weaver’s mother just recently completed a 10-day IV-antibiotic regimen for an infection which prompted a brief hospitalization.

A Hands-On Approach
“My other sister lives in Texas and provides a great deal of support to our family, but without home care and adult day all of the day-to-day caregiver tasks, challenges or upsets are in my hands,” said Weaver.

Like many middle-aged caregivers, her hands are already in myriad areas every day – raising her teenage son, working as a secretary for the agency’s pediatric home connection program, tending to her home just blocks from her parents, keeping tabs on her own well-being and when the rare opportunity presents itself – journeying to yard-sales.

Weaver’s hands are also inextricably linked to program assistant Judy Aigner at the adult day center and to Sue Jarrett, the Chesney’s soft-spoken blue-eyed private duty caregiver whose extraordinary capacity to serve the Chesneys has earned her significant praise and admiration from her supervisors, colleagues and most notably from agency clients. “She is number one!” Mr. Chesney said emphatically.

Nearly every day for four years and counting, Jarrett, 41, crosses their threshold for two two-hour stints. Beginning at 7:30 a.m. and again twelve hours later, she delves into routine personal care, meal/snack preparation, an overview of any upcoming appointments and some good-ole chit-chat on the news of the day. Jarrett also makes certain Mrs. Chesney completed her telehealth regimen, administered her insulin injection and checked her blood sugar, especially since she’s showing early signs of Alzheimer’s as is Mr. Chesney. 

In the morning, she preps some breakfast for Mr. Chesney, a dapper gentleman who worked at Conrail and retired from the manufacturing sector. She keeps an eye on him, too, as he enters the Blair Senior Services van. A 30-minute ride takes him to the agency’s adult day care program where he’s been going most every weekday since 2006 for socialization, exercise, meals as well as symptom management and oversight as a result of his CHF diagnosis. “But he gets so much more,” Weaver claims. “The staff has adopted him as their dad and the camaraderie with the other clients is just priceless. They just love him and the feeling is mutual.”

Initially, Jarrett’s caregiver role may sound pretty rudimentary until one realizes the complexities like cellulitis, incontinence and edema she has encountered as a result of Mrs. Chesney’s CHF, COPD and diabetes.

What is not so apparent is the detail – and Jarrett’s thoughtful consideration – needed to ensure her comfort not only during routine personal care, but for the remainder of the day when Mrs. Chesney’s is self-sufficient and home alone. “Empowering clients to care for themselves is such an important aspect of my role. I know their surroundings and teach them how to arrange, or re-arrange, their setting to be safe and comfortable,” said Jarrett. “Knowing I am helping them to live an easier life at home the way they want to makes me happy and makes them happy.”

Working around her diabetic foot wounds, catheter, nebulizer treatments and need for continuous oxygen requires Jarrett’s constant attention as well as the greatest of all virtues and rarest of commodities – patience.

“Shirley’s safety and comfort are of utmost concern to Sue,” said home health nurse/case manager Julie Kling, who oversees the Chesney’s medication management and dispensing. “She goes above and beyond with every aspect of their care,” added Kling. She also reviews Mrs. Chesney’s telehealth readings and makes periodic blood draws and potassium checks for Mr. Chesney.

“Telehealth is also an eye in there every day and has helped to prevent several hospitalizations and emergent care visits for Shirley. We know any fluctuations in her pulse ox or blood pressure may warrant a visit from us and if needed Sue is always ready and willing to take her for follow up care,” added Kling.

A First-Hand Account of Savings & Value
Home health professionals such as Kling can help patients like the Chesneys manage multiple medications and physicians in a very cost-effective manner and in the environment they overwhelming desire most, according to Vicki Hoak, Executive Director of the Pennsylvania Homecare Association. 

“Their ability to forge strong relationships with their patients allows them to assist people in self-management of their condition and provide necessary follow up to ensure they remain on track with their course of therapy,” Hoak added.

In addition to a host of state legislative and regulatory priorities, the agency works alongside PHA as they continue leading advocacy efforts with federal lawmakers. Agency staff joined more than 30 PHA members in March who convened on Capitol Hill to meet with members of the Pennsylvania Congressional Delegation and explain the value and importance of homecare.

One of PHA’s successes occurred last year with the Pennsylvania General Assembly amended the Family Caregiver Act, increasing the monthly reimbursement limit from $200 to $600 and the home modification cap from $2,000 to $6,000. With no additional state appropriation needed from the Commonwealth, the act merely provides local AAAs the flexibility they need to effectively target the state funding to caregivers so more seniors can remain in their homes. This marked the first adjustment since the program began in 1990.

Advocating Reform of Long-Term Care Services and Supports
Although the Chesneys receive home care and adult day services via the state’s aging waiver since they meet income eligibility guidelines, there’s also a concerted effort among PHA and its 350 member agencies to ignite broader reforms to the state’s obsolete Medicaid long-term services and supports [LTSS] statutes. They are pushing for further balance of the long-term care system where costs for 35 percent of the Medicaid population [elderly/adults with disabilities] represent 69 percent of Medicaid’s total budget. These disproportionate, high costs are mostly attributed to nursing home care – the most expensive type of care and the least desired. 

While Pennsylvania has seen a marked rise in Medicaid dollars being spent on home and community-based care for our seniors and those with disabilities, the state still lags behind the national 55 – 45 percent balance nursing home to home-based care. 

An equal-access, comprehensive and balanced LTSS system will never exist without a comprehensive program transformation. PHA continues to efforts to educate state lawmaker and officials with its comprehensive plan unveiled last year for transforming the state’s LTSS system. It’s a plan that will bring Pennsylvania into the forefront of states as having a LTSS system that is designed to respond swiftly to consumers and is based on quality and cost efficiency. Below are first two of the five proposed system changes to Bring Long-Term Care Home PHA members are strongly endorsing.

Hands Down, There’s No Place Like Home
“And in the end it's not the years in your life that count. It's the life in your years." The meaning behind the words of Abraham Lincoln emphasize that the quality of one’s life is by far the most important aspect. The Chesney Family represents just one of thousands of families impacted by the mission-driven service of NAHC and its affiliates/membership to ensure that the highest quality of care is delivered where people want to be most – at home. CARING editor Lisa Yarkony said it best in her editorial last month in terms of advancing the home and community-based service spectrum as the silver tsunami ensues, “…Make a stand. Let’s march ahead for the long-term future of health care in the United States.”

About the Authors:
Nicole Fedeli-Turiano serves as director of legislative affairs for Home Nursing Agency Healthcare and is co-chair of the Pennsylvania Homecare Association [PHA] Public Policy Committee. As a member of the agency’s senior leadership, Fedeli-Turiano responds to pertinent legislation and regulatory affairs at the state and federal level impacting service delivery and payment reform. Over the last decade, she has authored numerous expositions on the accountability, cost-effectiveness and quality of home and community-based services to targeted audiences, including lawmakers, the general public and healthcare professionals. She holds a B.S. in political science from The Pennsylvania State University and attended Middlebury College in Vermont for post-graduate studies.

Bill McManus currently serves as Home Nursing Agency Healthcare's Vice President of Private Duty Home Care and Adult Day Services. He has 15 years of experience in post-acute healthcare ranging from outpatient rehabilitation, physician practice management, home health and hospice. Prior to his current position, McManus had served as the agency's director of operations for two home health/hospice branch offices. He holds a M.B.A and is board certified in healthcare management as a Fellow in the American College of Healthcare Executives. He’s also a member of the Society for Healthcare Strategy and Market Development.

Endnotes
1 Cheek, M., Roherty, M., Finnan, L., (Grace) Cho, E., Walls, J., Gifford, K., Fox-Grage, W., Ujvari K. “On the Verge: The Transformation of Long-Term Services and Support,” AARP  Public Policy Institute. Washington, DC, 2012 1-2; “2011 Market Survey of Long-Term Care Costs,” www.metlife.com/mmi/research/2011-market-survey-long-term-care-costs.html#findings
 
2 The Whole Person Continuum of Care Providing Specialized Services to Individuals of All Ages, Home Nursing Agency Healthcare, January 2012.

3 The Center for Rural Pennsylvania, “Rural Pennsylvania and the 2010 Census,” www.rural.palegislature.us
 
4 One-to-One Care: The Best Way to Manage Chronic Conditions, Pennsylvania Homecare Association. May 2011.

5 National Adult Day Services Organization, “Statistics on Family Caregivers and Family Caregiving,” http://www.thefamilycaregiver.org/who_are_family_caregivers/care_giving_statstics.cfm

6 AARP Public Policy Institute. Valuing the Invaluable: 2011 Update. The Economic Value of Family Caregiving in 2009. http://assets.aarp.org/rgcenter/ppi/ltc/fs229-ltc.pd