Our Mother’s Voice Empowering families to speak for their loved ones in nursing homes who cannot speak for themselves

Our Mother, circa 1983

Our Mother, 2011

About Our Mother’s Voice “After the Storm” by Carol J Hay Moving into a nursing home changes everything! But life should be good, even if different than before. Our mother is a lifelong activist for social justice for those without a voice. Dementia has taken her ability to talk, and she now finds herself a member of a group without a voice: nursing home residents who cannot speak for themselves when something is not right. Her non-verbal communication with us, her daughters, was very clear to us, however; and called us into action, to advocate for this group without a voice, to carry Our Mother’s Voice.

Our Mother’s Voice Mission Statement Our Mother’s Voice provides information to families of nursing home residents to empower and equip them to advocate for quality of life and quality of care which goes beyond traditional custodial care to encompass the achievement of maximum physical, spiritual, social, mental, and emotional health for each resident. Vision Families will be empowered to require services that respect and nurture all aspects of each individual’s unique character regardless of age or infirmity. All nursing home residents will live a life of quality and dignity. Values We value all people, regardless of age or loss of capacity, as human beings worthy of respect and deserving of dignity. We value self-determination as achievable for every person. We value the support of families in enabling each person to express one’s rights, needs, choices, and preferences, when that person is no longer able to do so for oneself. We value nursing facilities which strive to achieve true quality of life and quality of care for each individual resident, founded on the concepts of self-determination and family advocacy in the exercise of each resident’s rights. We value honesty, integrity, and good stewardship of all resources, human and material; in the conduct of both professional and personal business.

FAST FACTS from Our Mother’s Voice Did you know: Nursing homes that receive Medicare or Medicaid funding must provide the same quality of services and care for EVERY resident regardless of who pays for the care. In a well-run nursing home staff are consistently busy interacting with residents and not just monitoring. “Acting out” by a resident is often an attempt to communicate something important. “Inappropriate” behavior often indicates a need for more physical activity or social interaction. Physical restraint and medication are not to be used to “control behavior.” Nursing homes must offer ongoing activities every day. Residents have the right to receive help if needed to participate in activities. Every resident has the right to dignity and choice regarding care, including when and how personal care such as bathing and dressing is provided. Standing and walking, even if the resident needs assistance, are essential for health and should be more than to and from the toilet. Residents should not be in bed during the day unless their medical condition requires it. Excellent and inexpensive training materials are readily available to every nursing home to insure that staff are equipped to give this high quality of care. Every nursing home has a social worker whose job it is to help the family see that their loved one’s needs are met. Family representatives are members of the resident’s care plan team, not guests.

Resident Rights Every person who lives in a nursing home has human and civil rights, and specific “resident rights”. If the resident cannot speak for oneself, the family becomes the voice and observes for any signs that “something isn’t right.” The nursing home provides a copy of the resident’s rights. The family should become familiar with it and speak out if there is any question whether their loved one’s rights are being infringed upon at any time. Dignity, respect, self determination, choices, and even being listened to are all critical issues. Quality of Life and Quality of Care are Resident Rights. Family members have the right to speak for those who cannot speak for themselves. “Confusion in Red” by Carol J Hay Family becomes the voice for those who are incapacitated.

Resident Rights You May Not Know Equal access to quality of care and services regardless of pay source More than “clean, dry, dressed and fed” Dignified existence – treated with dignity and respect in all aspects of life Choices about routine, daily care, activities – SELF-DETERMINATION Respect for individual preferences in clothing, activities, provision of care & services Communication – more than just talking & visiting with family, this includes being listened to by staff. Even nonverbal communication such as body language, eye contact, and behavior. The use of medication instead of attending to the communication of the resident is a violation of the rights of the resident. Freedom from abuse, neglect, misappropriation of resident property Treatment that meets the needs of the resident. NOTE: Transfer from the facility because “needs can’t be met” should ONLY occur AFTER there is thorough evaluation and identification of needs, and all reasonable efforts to meet the needs have been exhausted. These processes must be fully documented in the record. Transfer from the facility must NOT be for the convenience of the facility.

QUALITY OF LIFE “Whitewater” by Carol J Hay Individual preferences for activities should be honored. A nursing facility should be a place that actively promotes quality of life for its residents. This not only includes medical care and meeting physical needs; it also means that the nursing home should honor each individual’s personal preferences about activities, day-to-day schedules, personal space, how personal care is provided, and all the “little things” the rest of us take for granted every day. This remains true for all residents – even those who cannot participate in groups, are not physically active, or cannot make choices on their own. Family members are vitally important to making their loved one’s voice heard in these cases!

Quality of Life A facility must care for its residents in a manner and in an environment that promotes maintenance or enhancement of each resident’s quality of life. Rule #1is respect for each resident’s individuality – not just part of a group Solutions must be sought to accommodate preferences, and to allow participation in activities, care planning, and daily routines important to the resident. Ongoing schedule of activities that are meaningful to the resident TV and music players are NOT “an ongoing schedule of meaningful activities”! – although they may be an important part of an activity schedule for residents. Assessment of specific needs and interests of each resident is necessary to determine what defines “quality of llife” for each resident individually. “Not enough staff” is not an acceptable excuse for failure to meet quality-of-life needs for each individual resident. Quality of Life is NOT just medical care. It is recognizing and responding to the unique character of each individual in a manner that offers the resident dignity, respect, and the opportunity to participate in a meaningful existence.

Quality of Care The family representative of a nursing home resident is considered a member of the care plan team – not a guest who simply signs a form. If the resident cannot speak for oneself, this becomes critically essential. The care plan should address medical, physical, mental, and social aspects of the resident’s life; it should be a goal-directed plan to maintain or enhance the resident’s experiences in all these areas to the highest practicable level of the resident – not the facility. Quality of Care includes how a resident is treated every day: how staff help with bathing, dressing, oral hygiene, movement; how medications are used; and how accidents are handled. Residents should be treated with dignity; medications should not be used unnecessarily, and accidents should receive follow-up. Health is number one, but it is just the foundation for a high quality of care and of life. It is not all there is to it. “The Gift” by Carol J Hay True care nurtures spiritual, mental & social health, not just physical.

Quality of Care Quality of Care means more than medical care and care for the physical needs of the nursing home resident. Medical, physical, mental, psychosocial, and spiritual aspects of the resident’s life are all included in true quality of care. The Care Plan should address all these facets of the resident’s life in measurable, objective goals and strategies to maintain or improve – or minimize loss of function – in every area of the resident’s life. The family representative is a member of the care plan team, not just a guest who signs a form. The facility staff are the responsible party for implementing the Care Plan. Family members may assist or even agree to take on some part of the plan objectives; however, the facility has the ultimate responsibility to see that the plan is carried out. Medications are not the first or only answer to every condition. “Agitation” or “noncompliance” often are efforts to communicate that something is not right. Illness or just dissatisfaction with what is happening may be at the root of these behaviors. Quality of Care looks deeper to find root causes and looks “outside the box” for solutions once physical illness is ruled out. Sedation is not always the solution. Accidents happen; but they should be investigated. Injuries of unknown origin must be investigated. Assumptions as to cause should never be acceptable.

WHAT YOU CAN DO: “The Sentry Box” by Carol J Hay Families can learn about their loved one, the nursing home, and the regulations, to equip themselves to be advocates for services that will provide the best practicable quality of life for their loved ones in nursing homes. Families are the safeguards for their loved ones who cannot protect themselves.

WHAT YOU CAN DO: Stay involved with your family member after s/he is placed in the nursing facility. Visit. Learn the plan of care, and make sure it meets your loved one’s needs. Provide information to staff that will help the plan of care to be complete and meaningful. Communicate regularly with your family member’s social worker. Observe your surroundings when you visit the facility: your loved one, other residents, the building, the staff. Note anything good, and let the staff know. Note anything that doesn’t seem right. Look for “trends” – more than one occurrence of that thing. Ask questions of the staff, and work with them if you see anything that needs attention, even if it is not a trend. If not addressed, it could become one. Become familiar with the facility policies and state regulations that apply so that you know what should be happening. Identify specific problems or violations that exist and talk with management staff. Approach the facility administration, and then the corporate leadership if those violations or problems persist. Cite the policies and regulations that are in violation, and give examples of your observations and efforts to work with staff to correct them. Make notes for yourself so that you will be thorough and accurate when you approach these officials.

6. If these efforts fail, the state regulatory agency has a complaint reporting process. They will need the information you have in writing (you should already have it from following steps 1-5 above), and they will refer you to the agency staff who takes reports of complaints or violations. 7. The regulating agency will determine whether investigation is warranted. Follow up with the regulatory agency after they have completed an investigation, to learn what they found and what to expect the facility to do in response to the investigation. Ideally, you should not have to go beyond step 4. If you know what should be happening, understand the policies and regulations, and work with staff, you should be able to resolve most issues. We have included steps 5 – 7 because there are a small number of cases in which they may be needed. 8. Many facilities have Family Councils, organized to provide families with a voice and a venue to discuss, learn, and interact with the facility administration on behalf of all residents and their families. Often these Councils also occasionally conduct special activities for residents. You may want to become involved with the Family Council if your loved one’s facility has such a group. If not, you may want to advocate for the establishment of a Family Council.

Exception: Abuse and neglect concerns are not discussed here Those concerns are more serious and should be handled according to your state’s laws of reporting. Every facility must post those laws clearly. The Code of Federal Regulations, 42CFR488.301, defines abuse, neglect, and misappropriation of property as follows: Abuse means the willful infliction of injury, unreasonable confinement, intimidation, or punishment with resulting physical harm, pain, or mental anguish. Neglect means failure to provide goods and services necessary to avoid physical harm, mental anguish, or mental illness. Misappropriation of resident property means the deliberate misplacement, exploitation, or wrongful, temporary or permanent use of a resident’s belongings or money without the resident’s consent.   NOTE: Our Mother’s Voice does not give advice. We provide information so that families can make their own decisions about advocating for their loved one. These steps are provided for information only and reflect the standard “chain of command” in the typical nursing facility. Each set of circumstances is unique, and each family’s decisions must be based upon those individual circumstances.

ABOUT the artist, Our Mother All artwork featured in this presentation is taken from original paintings © Carol J Hay, our mother; used with permission. “The Sentry Box”, “The Gift”, “Confusion in Red” – mixed media on canvas; “Whitewater”, “Joy Cometh in the Morning”, “After the Storm”, “Irrational Exuberance” – oil on canvas. Photos of “The Gift” and “Whitewater” taken from giclee prints on canvas. “Irrational Exuberance” by Carol J Hay Our mother developed her interest in abstract art in the years shortly preceding her diagnosis. She was able to enjoy artistic expression during the early stages of her dementia, even after her language began to fade. We chose these paintings to represent the major tenets upon which Our Mother’s Voice is founded, both as a visual connection to each of the concepts, and as a celebration of our mother’s talent and the joy she found in her work.

SUCCESS STORIES “Joy Cometh in the Morning” by Carol J Hay True Quality of Life makes every day more enjoyable for every resident.

OTHER RESOURCES “Spiral Galaxy” by Carol J Hay There’s a great wealth of information available “out there” to help and empower families.

Other resources To learn what the federal requirements are for quality of care and quality of life in nursing homes defined in the Code of Federal Regulations for Nursing Facilities, 42CFR483 Subpart B: http://www.access.gpo.gov/nara/cfr/waisidx_05/42cfr483_05.html For information about the agency that enforces these regulations: Center for Medicare & Medicaid Services (CMS): http://www.cms.gov/ National Advocacy Groups for people living in long-term care facilities, their families and advocates: http://www.theconsumervoice.org – National Consumer Voice for Quality Long-Term Care http://www.pioneernetwork.net – The Pioneer Network http://aarp.org – American Association of Retired Persons To identify your state’s nursing home licensing agency, certification agency, Medicare & Medicaid administrative agency, and advocacy groups: http://www.theconsumervoice.org/ombudsman Resources for training in rights, dignity, & quality of life (free if not applying for training credit hours): http://www.ceusite.com/courses_inservice.php Training for families in “resident-directed care” (What to look for in a nursing facility that provides Quality of Life): https://www323.livemeeting.com/cc/aarp_pro/view?id=LTC+Quality and a summary related fact sheet for consumers: http://www.theconsumervoice.org/sites/default/files/advocate/Culture-Change-in-Nursing-Homes.pdf

Cont’d For information about Family Councils and how to establish & operate one: http://www.theconsumervoice.org/familymember/family-council-center For a radio broadcast about Family Councils and how they work: http://www.blogtalkradio.com/kindethics/2011/03/21/jessica-brill-ortiz-the-consumer-voice-empowered-effective-and-independent-family-councils What Medicare surveyors look for in quality for nursing homes: http://cms.hhs.gov/manuals/Downloads/som107ap_pp_guidelines_ltcf.pdf For examples of how to advocate for, design, and monitor Individualized Quality of Care and Quality of Life: http://www.theconsumervoice.org/sites/default/files/advocate/advocacy-groups/Basics_of_Individualized_Quality_Care.pdf http://www.theconsumervoice.org/piecing-together-quality-long-term-care For information on the human and financial costs of poor nursing home care: http://www.theconsumervoice.org/sites/default/files/advocate/action-center/The-High-Cost-of-Poor-Care.pdf For fact sheets on many topics of interest for advocates: http://www.theconsumervoice.org/resident/nursinghomes/fact-sheets

MORE RESOURCES ON CAREGIVING, for family members providing care http://www.ageinplace.org/ National collaborative group of professional service providers for resources and planning for in-home care for senior citizens. http://www.familycaregiver.org/index-3.html Family Caregiver e-magazine. For all caregivers, whether full- or part-time, in the home or long-distance. http://www.nfcacares.org/index.cfm Official website of the National Family Caregivers Association. Offers information and support for caregivers. Caring for a Loved One with Alzheimer’s Disease: A Guide for the Home Caregiver. Dr. Peter V. Rabins, Johns Hopkins Special Reports. Downloadable at http://www.johnshopkinshealthalerts.com/special_reports/memory_reports/HomeCaregiver_landing.html http://www.leezasplace.org/ Leeza Gibbons’ website dedicated to caregivers. http://www.caregiving.org/ Official website of the National Alliance for Caregiving http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=2224 Official website of the Family Caregiver Alliance http://www.caringtoday.com/ Caring Today e-magazine Secrets Aging Parents Keep and How to Help Them http://www.aolhealth.com/2010/10/28/secrets-aging-parents-keep-and-how-to-help-them/

Cont’d ON ALZHEIMER’S DISEASE http://www.alzfdn.org/ Official website of the Alzheimer’s Foundation of America http://www.alzstore.com/ The Alzheimer’s Store. Products for caregiving. http://www.alznews.org/Library/InfoManage/Guide.asp?FolderID=53 Alzheimer’s Daily News online newspaper Study Finds Alzheimer’s Disease May Be Easily Misdiagnosed: http://www.aolhealth.com/2011/02/23/alzheimers-disease-easily-misdiagnosed/ ON AGING AND ELDERCARE http://www.ncoa.org/ Official website of the National Council on Aging http://www.aging-parents-and-elder-care.com/ Clearinghouse for all kinds of information. http://www.edenalt.org/ Official website of the Eden Alternative, a nonprofit organization dedicated to “de-institutionalizing” the care of elderly people. http://www.naela.org/Public/ Official website of the National Academy of Elderlaw Attorneys http://www.asaging.org/index.cfm Official website for the American Society on Aging. Caregivers may join. Offers free web seminars for members and continuing education courses for health care professionals.

Our Mother’s Voice A nonprofit organization dedicated to improving the quality of life for nursing home residents. Our Mother’s Voice was established in 2010 in honor of our mother, Carol J Hay. Visit us at www.ourmothersvoice.org for more information on Resident Rights, Quality of Life, Quality of Care, and What You Can Do; and links to other resources for information, training materials, and regulatory contacts. “Our Mother’s Voice” is a trademark owned by the founders of the organization. All rights reserved. All artwork taken from original paintings by Carol J Hay, copyrighted and used with permission.