APPENDIX E PREPARED STATEMENT OF JO-ANN FRIEDMAN While I have worked in health care and health care communications for the past 19 years, it was my personal experience in home care (as a provider and as a patient) that underscored the benefits and the challenges of this "new" health care treatment setting. In 1982, I was hospitalized with a sudden, paralyzing illness called Guillain Barre Syndrome, a viral attack on the nervous system. Muscle movement sparked by the affected nerves became progressively weakened. I had seen patients with this illness before and I knew of its rapid onset. As my arms and legs became weaker and weaker, so-called simple activities such as eating and walking became almost impossible. Everyone, including me, waited to see which abilities I would lose and which would remain. Fortunately, I knew that with time and physical therapy, my weakened muscles would grow strong again. Once the viral attack subsided, the comfort and convenience of my own home seemed the ideal place to be. Clearly, I needed help just to get around: my eyes were paralyzed, my coordination and balance were reminiscent of a drunk's. I was so weak that my then six-year old niece was able to push me over with the touch of her finger. I knew I needed physical therapy to help me regain my lost strength and balance. - - lacked As a patient I learned that many health professionals comprehensive information about home health care. The hospital staff doctors, nurses, therapists and social workers were unable to answer my questions about arranging home care. Despite my own expertise I was unsuccessful in my attempts to get the hospital to "officially" place me on home care. Eventually my wish to go home outweighed my wish to untangle the hospital's administrative web. arranged for my own housekeeper and physical therapist. I No Home care demands a great deal of informed consumer involvement. other health setting requires such a high level of knowledge of what's needed, where to find it, how to pay for it, what to expect from therapists, aides and nurses, where to go for support and information, and what to do when you're not receiving quality care. My experience convinced me of the benefits of home care. It also alerted me to the frustration and difficulties which patients and their families encounter in arranging and coordinating quality care. In writing the almost 600-page consumer guide HOME HEALTH CARE: Α Complete Guide for Patients and Their Families (W.W. Norton), I assembled the practical information needed to ease the road to recovery or to manage an ongoing illness in what can be the best of all possible treatment settings: home. PREPARED STATEMENT OF THE NATIONAL LEAGUE FOR NURSING The National League for Nursing (NLN) welcomes the opportunity to express its views regarding quality in home health care. Recognized by the U.S. Department of Education as the official accrediting agency for nursing education, the League's 1,800 agency and 1,800 individual members comprise a unique non-profit coalition that promotes quality nursing care to the public. As a national accrediting organization for home and community health care, we are committed to upholding and improving standards of home health care so that consumers receive care of the highest possible quality. The NLN accreditation program is a voluntary peer review process, established in 1961. It represents our commitment to working with other health professions with particular focus on consumers as recipients of care. NLN's community and home health accreditation program has encouraged providers to adhere to nationally accepted standards. It has also stimulated improvements in the way accredited agencies provide care by requiring them to examine the evolving relationship between providers and clients. This relationship has come under closer scrutiny lately as a result of multiple changes in the health care system. These changes are the result of new pressure from private third party payers and from the enactment of Medicare's prospective payment system, which introduced new incentives for the provision of hospital care to Medicare beneficiaries. Changes in financial incentives have led hospitals to discharge patients "quicker and sicker," resulting in a stepped up demand for post-acute care services, and in particular, home health services. Once dominated by public and voluntary agencies the home health field now comprises a broad spectrum of providers, ranging from family-run businesses to large multi-unit corporations. Proliferation in the types of facilities that are available in the community has helped to improve patient access to home care, but little has been done to improve coordination in continuity of care. Fragmentation of care has exacerbated the need for greater coordination of and attention to quality. Consumers are often confused as to which resources are available and under which conditions. Furthermore, rapid growth in the field has been accompanied by reports of fraud and abuse, which unfortunately, are all too familiar to the members of this committee. These problems demonstrate the need for external quality assurance programs such as NLN's community health and home care accreditation program. Because of mounting concerns about quality in the home health arena, the NLN Board of Directors, in February of this year, approved a position statement on ensuring quality in home health care. Given the prominent and well-established role of nurses as the primary provider of home healthcare, the Board: "...affirmed their belief that it is the responsibility of the nursing profession, which historically has been the predominant home care provider group, to establish and to uphold standards of home health care. The quality of nursing care delivered in patients' homes should be monitored by nurses themselves through a self-regulatory process that relies on nursing expertise, augmented by the participation of professionals in other provider disciplines and representatives from the community." At this point in time, it is more critical than ever before that an effective mechanism be in place for ensuring quality to consumers of home health care. The NLN accreditation program--with its sound reputation, nationally accepted standards, consumer and interdisciplinary involvement, and ongoing methods to incorporate changes--makes an important contribution towards those ends. As you may know, NLN has applied to the Health Care Financing Administration (HCFA) for deemed status of our home health accreditation program. If the NLN were to receive deemed status, home helth agencies with NLN accreditation would be recognized as meeting the Medicare Conditions of Participation without having to go through a state agency certification process. We are working with HCFA to acquaint them fully with our program and we are optomistic that a favorable decision will be made this soon. We appreciate any support this committee might give on behalf of our application for deemed status. We believe that deeming NLN's program is the first of many steps to be taken by the private and public sectors to guarantee a high level of quality to recipients of home health care. We also commend you, Mr. Chairman, and other committee members for your interest in home care and for convening these hearings. The title of the hearings, "The Black Box of Quality for Home Health Care," reflects the substantial lack of information in this field, making policy recommendations more difficult. We believe that the NLN accreditation program, by setting rigorous standards and requiring accredited agencies to adhere to extensive reporting and evaluation procedures, will help answer some of the pressing questions, and provide greater accountability from agencies participating in the Medicare program. We look forward to productive discussions with committee staff and members in the months ahead, as together we strive to fill in the gaps for such a critical area--the safety and quality of care rendered to our nation's recipients of home health services. PREPARED STATEMENT OF EDWARD N. SAGE ON BEHALF OF THE NATIONAL ASSOCIATION OF AREA AGENCIES ON AGING QUALITY ASSURANCE IN HOME CARE Home care is a growing service industry, being requested more and more as an alternative to institutional care. A recent National Research Corporation survey of 1,000 consumers determined that home care was the top priority for alternative health services most needed in local communities. And as America's "old-old" population of persons 85+ continues its rapid growth in numbers, there will most likely be similar dramatic growth in the home care industry. But such growth needs to be watched, for there are major unresolved issues facing home care in the U.S. A recent report compiled by the Oregon State Senior Services Division makes the following points. "At the core of the problem is our approach, as a nation, to long-term care: we have defined long-term care as a medical problem; insisted on professional medical long-term care services (either directly provided or supervised); funded these services with state and federal medical dollars; and created a highly regulated system to provide these services, modeled after the acute medical services available through hospitals and home health agencies. All this we provide for the typical long-term care consumer, whose primary problem is functional, not medical. "While the elderly have a greater incidence of medical problems than the So home care is more than "home health" care: it includes home delivered meals, personal care, housekeeping services and minor home repair or chore services. "At its best, home care is holistic, providing in-home health, social, and other human services that can help you as a whole person, not just as a 'patient'." (2) Yet home care is not always "at its best." There are abuses. There can be fragmentation services. Different from institutional care where a single provider cares for an accessible, centralized client population, home care often consists of a multiplicity of providers giving care to homebound clients. |