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ook review “Mom Are You There?” by Kathleen A. Negri ISBN: 0-9763557-0-1 Reviewed by John J. Husson, Esq. Book Review “Mom Are You There?” is a compelling story by Kathleen A. Negri, a successful Elder Law Attorney, who convincingly explains how she transformed her mother’s diagnosis of Alzheimer’s disease into a positive life changing event for both she and her mother and other members of her family. The author takes us from the initial telltale and progressively worsening warning signs of her mother’s forgetfulness and other behavioral clues of dementia to the doctor’s office where the definitive diagnosis is communicated to the family. Obtaining the specific diagnosis is emphasized as important for the family who must be able to deal with the reality of Alzheimer’s. The book is written as a life changing journey for the author who describes how she was able to put aside long term negative childhood memories of her mother and focus on her as a person freed in her present condition from what she describes as her mother’s “hard wiring.” Dementia is described by the author as a condition which strips away many of the negative qualities of its victims’ personalities transforming them into more of a childlike presence. The author’s story is especially important in view of a staggering 19 million families who are impacted by the disease. We are reminded that the large majority of Alzheimer’s victims remain cared for at home and with an estimated lifetime cost of $175,000. Helpful information is provided about the need for financial, medical and legal planning, support groups and other resources, but the best part of the book focuses on the author’s ability to describe in detail how she dealt emotionally with her mother’s disease as a positive and healing event. It is the emotional upheaval caused by Alzheimer’s that tears many families apart due to the huge financial and disturbing stresses imposed on them. The author does an admirable job in convincing the reader that Alzheimer’s can be liberating in many ways. For example, her mother Patricia though dogmatic and cold in her earlier years, now because of the disease can only deal with the present moment and her warmth shines. It is the remaining moments on the journey with her mother that the author emphasizes as being so important to the emotional health of both the victim of the disease and family members. Because the loved one simply “emotes” as the disease progresses it is much easier to have a “linking of the spirits”. The author suggests to the reader “listen to your inner child’s voice” and “do things for their person” in order to make the final journey positive and life rewarding. The most helpful section of the book deals with what the author refers to as the journey or a path to peace for both the loved one and the loved one’s family. Being able to think differently about dementia is critical to the emotional health of the family. The need to put away negative life experiences since the loved one with Alzheimer’s can no longer experience the past is a recurrent theme. The author refers to this as leaving your agenda at home or doing away with what is referred to as “stinking thinking”. 16 This change in attitude and approach made a tremendous difference in the author’s ability to genuinely enjoy and appreciate her mother on her final journey to death. The author includes lots of understandable guidance and practical tips throughout the book on what families can do in order to deal effectively with this disease. For example, she suggests keeping a journal to help deal with negative childhood memories and to document the loved one’s life story in order to keep the focus positive. There are exercises at the end of each chapter which are designed to cause the reader to reflect on what behaviors and actions truly make a difference for both family and the loved one. The final section of the book impresses the reader that a successful journey as companion to the loved one with Alzheimer’s can translate into being better able to deal with many of life’s obstacles and difficulties. “Mom Are You There?” is required reading for all Elder Law Attorneys and especially families dealing with the tragedy of Alzheimer’s disease. The story of the author’s journey with her mother concludes with a very moving “Eulogy for a Mother” which will leave many eyes moist. John J. Husson, Esq. practices Elder Law in Canon City, CO.
Vermont’s Long-Term Care Waiver Gene Coffey, Esq. Most of us have had our attention focused over the last several months on Congress’ effort to radically change Medicaid’s financial eligibility rules. In the midst of this battle, however, the U.S. Department of Health and Human Services (HHS), acting on a long-standing request, has granted Vermont permission to dramatically restructure its Medicaid long-term care delivery system through a Section 1115 demonstration waiver. 1 State Medicaid directors are already racing to put together similar proposals. Vermont’s new program, Choices for Care (CRC), may soon be the model for states’ Medicaid coverage of long-term care services. The Plan In 2003, Vermont concluded that its state budget problems and the aging of the Baby Boomer population created an “imperative” to implement “wholesale” changes in its delivery of Medicaid longterm care services. 2 It therefore decided to make two fundamental changes to the program: 1) make home and community-based services, previously available only on a limited basis to Medicaid enrollees through Section 1915 waivers, a mandatory Medicaid benefit available to any Medicaid enrollee in need of long-term care; and 2) provide limited community-based services to individuals deemed “at risk” of long-term care. Vermont hopes that this expanded commitment to non-institutional services, in addition to helping Vermonters avoid institutionalization, will enhance beneficiary satisfaction and reduce costs. On the other hand, reducing costs was the motivation for the program, so there are some strictly cost-reducing features. These include an overall spending cap for long-term care services, a waiting list for certain eligible individuals, and narrowed clinical eligibility standards for coverage. HHS granted approval of Vermont’s demonstration waiver request on June 13, 2005. The program works as follows. If the state determines that an individual applying for immediate coverage of long-term care services is clinically eligible, the individual is placed into either the “highest need” or “high need” category. Individuals meeting the highest need clinical criteria are guaranteed, or entitled, to coverage of their choice of services+institutional services or home and communitybased services. For high need individuals, the same choice exists, but Medicaid coverage for services is dependent on the availability of funding. For all individuals choosing home and community-based services, a case manager develops the menu of services for which the individual will receive coverage based primarily on the results of an Independent Living Assessment. Each high need individual for whom funding is not currently available is placed on a waiting list and given a priority score based on the individual’s level of need. A case manager communicates with the individual monthly to monitor the individual’s health. Financial eligibility rules, including spousal impoverishment rules, were not modified for the waiver, save for a slight increase in the resource limit for those choosing the home and community-based option. There also exists a third category, called the “moderate need” category. Individuals who are not in current need of long-term care but with some need for assistance with an activity of daily living may receive coverage for case management, adult day care and homemaker services, “so that their conditions can be stabilized or improved, thus avoiding or delaying more costly institutional care.” 3 A sum of $1.7 million will be set aside annually for this category, with a waiting list to develop as funding is exhausted. The state expects to enroll close to 400 individuals in the moderate needs category over the five-year course of the waiver. Pros, Cons Certainly, the primary benefits of this approach are significant and dramatic. By creating an entitlement to home and communitybased services, Vermont has (continued on page 20) 17
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Page 5 and 6: Are You Ready for Your 2:30 Appoint
Page 7 and 8: President’s Message By Lawrence D
Page 9 and 10: Executive Director’s Message By S
Page 11 and 12: Tales of NAELA Saved by the NAELA A
Page 13 and 14: Address Medicaid’s Institutional
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Page 21 and 22: Vermont’s Long- Term Care Waiver
Page 23 and 24: The Case Against Court Certificatio
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Page 27 and 28: Chapter President’s Listing Arizo
Page 29 and 30: Introducing NAELA’s Newest Member
Page 31 and 32: NAELA Members in the News NAELA was
Page 33 and 34: Divorce Elder Law Style (continued
Page 35 and 36: MAY 2006 NATIONAL ELDER LAW MONTH S

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