Our Mothers Voice Empowering families to speak for their loved
ones in nursing homes who cannot speak for themselves Slide 2 Our
Mother, circa 1983 Slide 3 Our Mother, 2011 Slide 4 About Our
Mothers Voice 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
Mothers 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. Slide 5 Our Mothers Voice Mission Statement Our
Mothers 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 individuals 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 ones 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
residents rights. We value honesty, integrity, and good stewardship
of all resources, human and material; in the conduct of both
professional and personal business. Slide 6 FAST FACTS from Our
Mothers 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 ones needs are met. Family representatives are members
of the residents care plan team, not guests. Slide 7 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 isnt right. The nursing home provides a copy
of the residents rights. The family should become familiar with it
and speak out if there is any question whether their loved ones
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. Slide 8 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 cant 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. Slide 9 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 individuals 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 ones voice
heard in these cases! Slide 10 Quality of Life A facility must care
for its residents in a manner and in an environment that promotes
maintenance or enhancement of each residents quality of life. Rule
#1is respect for each residents 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. Slide 11 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 residents life; it should be a
goal-directed plan to maintain or enhance the residents 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. Slide 12 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 residents life are all
included in true quality of care. The Care Plan should address all
these facets of the residents life in measurable, objective goals
and strategies to maintain or improve or minimize loss of function
in every area of the residents 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. Slide 13 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. Slide 14 WHAT YOU
CAN DO: 1.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 ones needs. Provide information to
staff that will help the plan of care to be complete and
meaningful. Communicate regularly with your family members social
worker. 2.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 doesnt
seem right. Look for trends more than one occurrence of that thing.
3. 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. 4.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. 5.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. Slide 15 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 ones
facility has such a group. If not, you may want to advocate for the
establishment of a Family Council. Slide 16 Exception: Abuse and
neglect concerns are not discussed here Those concerns are more
serious and should be handled according to your states 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 residents belongings or money without the residents consent.
NOTE: Our Mothers 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 familys decisions must be based upon those individual
circumstances. Slide 17 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 Mothers Voice is founded, both as a visual
connection to each of the concepts, and as a celebration of our
mothers talent and the joy she found in her work. Slide 18 SUCCESS
STORIES Joy Cometh in the Morning by Carol J Hay True Quality of
Life makes every day more enjoyable for every resident. Slide 19
OTHER RESOURCES Spiral Galaxy by Carol J Hay Theres a great wealth
of information available out there to help and empower families.
Slide 20 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/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.theconsumervoice.org
http://www.pioneernetwork.net The Pioneer Network
http://www.pioneernetwork.net http://aarp.org American Association
of Retired Persons http://aarp.org To identify your states 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
Slide 21 Contd 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
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/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
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
Slide 22 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.ageinplace.org/
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.familycaregiver.org/index-3.html
http://www.nfcacares.org/index.cfm Official website of the National
Family Caregivers Association. Offers information and support for
caregivers. http://www.nfcacares.org/index.cfm Caring for a Loved
One with Alzheimers 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/Hom
eCaregiver_landing.html
http://www.johnshopkinshealthalerts.com/special_reports/memory_reports/Hom
eCaregiver_landing.html http://www.leezasplace.org/ Leeza Gibbons
website dedicated to caregivers. http://www.leezasplace.org/
http://www.caregiving.org/ Official website of the National
Alliance for Caregiving http://www.caregiving.org/
http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=2224
Official website of the Family Caregiver Alliance
http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=2224
http://www.caringtoday.com/ Caring Today e-magazine
http://www.caringtoday.com/ 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/http://www.aolhealth.com/2010/10/28/secrets-aging-parents-keep-and-how-to-
help-them/ Slide 23 Contd ON ALZHEIMERS DISEASE
http://www.alzfdn.org/ Official website of the Alzheimers
Foundation of America http://www.alzfdn.org/
http://www.alzstore.com/ The Alzheimers Store. Products for
caregiving. http://www.alzstore.com/
http://www.alznews.org/Library/InfoManage/Guide.asp?FolderID=53
Alzheimers Daily News online newspaper
http://www.alznews.org/Library/InfoManage/Guide.asp?FolderID=53
Study Finds Alzheimers Disease May Be Easily Misdiagnosed:
http://www.aolhealth.com/2011/02/23/alzheimers-disease-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.ncoa.org/
http://www.aging-parents-and-elder-care.com/ Clearinghouse for all
kinds of information. http://www.aging-parents-and-elder-care.com/
http://www.edenalt.org/ Official website of the Eden Alternative, a
nonprofit organization dedicated to de-institutionalizing the care
of elderly people. http://www.edenalt.org/
http://www.naela.org/Public/ Official website of the National
Academy of Elderlaw Attorneys http://www.naela.org/Public/
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. http://www.asaging.org/index.cfm Slide 24 Our
Mothers Voice A nonprofit organization dedicated to improving the
quality of life for nursing home residents. Our Mothers 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 Mothers Voice is a trademark owned by the founders of
the organization. All rights reserved. www.ourmothersvoice.org All
artwork taken from original paintings by Carol J Hay, copyrighted
and used with permission.
