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A Collection of
Health Care Stories
The following
are stories submitted by self-advocates, caregivers, providers and others.
They are submitted to show the need for good health care.
A REFERRAL TO A DENTIST
ORAL HEALTH AND DEVELOPMENTAL DISABILITIES HEALTH DISPARITIES CASE
REPORT
CASE STUDY: EFFECTS OF
POOR ORAL CARE IN 51-YEAR-OLD MALE
SPECIAL
NEEDS DENTISTRY CASE REPORT
DEBRA - A TRANSITION FROM AN INSTITUTIONAL SETTING
NEW
SHOES
AFTER CARE FOLLOW UP
ADVOCACY
STORY
HEALTH CARE STORY
HEALTH CARE PRACTITIONER EXPERIENCE - A STORY
CASE STUDIES ON ISSUES OF HEALTH CARE TREATMENT
STORIES
OF INDIVIDUAL ATTEMPTS TO ACCESS HEALTH RELATED
SERVICES
INADEQUATE
MEDICAL CARE
DENTAL CARE - HARD TO FIND
HEALTH CARE ISSUES
HEALTH CARE NEEDS NOT MET
THERAPIST NOT PAID - SESSIONS DISCONTINUED
A REFERRAL TO A DENTIST
I referred a client of mine to my own dentist, who at that time did some
Title 19 work. He has since retired. I was well aware of the fragile
pleasing personality of this mildly cognitively disabled woman.
I was also well aware of the demanding nature of my dentist. He
demanded patients who would religiously take care of their teeth with
proper regular oral hygiene.
I found afterwards that my dentist had demanded for her to upgrade her
oral hygiene. Her oral hygiene was probably little if any regular care.
I questioned his tactics with her and he laughed stating that she did
comply with his education and was working with her to dramatically improve
her oral hygiene.
This taught me again that people change when people take the time to
work with them.
This dentist had stated that he should be able to charge for teaching and
working with patients, rather than being financially rewarded for filling
cavities or pulling teeth.
ORAL HEALTH AND DEVELOPMENTAL DISABILITIES HEALTH DISPARITIES CASE
REPORT
A woman in her early thirties, born with a developmental disability and a
heart defect, was seen regularly at the Marquette University Dental Clinic.
Because of her developmental disability, she could not understand the
procedures at the dental appointments and was very uncooperative and
difficult to examine. She had to be sedated for most of her appointments.
Because of her behaviors and Title 19 insurance, the clinic no longer had
the capability to meet her regular dental needs. In addition, making
appointments became increasingly difficult due to transportation issues.
The van drivers would not help her physically out of her house and were
not always early enough to get her to appointments on time and there
were accessibility issues at her home. Her caretaker also found it
increasingly difficult to help her out of the house. For these reasons,
she was not able to see the dentist for well over a year.
Finally, due to discussions with her primary physician regarding her
poor oral health and heart disease and the possibility of Endocarditis or
Pericarditis developing, Children's Hospital agreed to see her in their
dental clinic. She had to be sedated and the dentist there found much oral
decay. Again, due to transportation and accessibility issues, she was not
seen for almost a year.
This patient very recently died at the age of 32. An autopsy has not
yet been performed but suspicions are that she died from a complication
due to her heart condition and her death could have been avoided with
better oral health care.
CASE STUDY: EFFECTS OF POOR ORAL CARE IN 51-YEAR-OLD MALE
A 51-year-old male with severe mental retardation was admitted to a State
Center for short-term emergency care following an aggressive episode in a
group home. The individual was severely underweight (94 pounds) and was
reported to refuse food. The physician found him to appear severely
malnourished. A dental examination was scheduled in compliance with
routine ICF-MR procedures. He was found to have nine significantly decayed
teeth, including two that were abscessed. Over a period of three months,
his teeth were repaired, other medical testing was completed and a
behavior assessment was conducted. The treatment team concluded the
aggressive behavior, weight loss and refusal of meals were related to his
poor oral health. Approximate cost of three-month inpatient state in State
Center: $44,550. (90 days at $495 per day)
SPECIAL NEEDS DENTISTRY CASE REPORT
Patient is a 34-year-old Caucasian male with a significant medical history
of postnatal hypoxic brain injury. Patient is non-ambulatory and cannot
care for himself. Patient lives with his birth parents and is their only
child. Patient receives routine dental cleanings. Patient is on Medicare
insurance.
Patient presented to dental office with a chief complaint from the
parents that the patient has been presenting with self-abusive behavior of
finger chewing, resulting in open wounds on his hands. These activities
increased his drooling and resulted in anti-fungal medications to control
peri-oral candidal infection. Dental examination reveals a mesio-angularly
oriented mandibular left permanent third molar (wisdom tooth) that
partially erupted. Due to the malposition, this area became a food trap
and resulted in localized pericoronitis (infection) of the tissues. The
only definitive treatment option was extraction of the tooth.
Patient was admitted to a local hospital when general anesthesia was
inducted and the infected wisdom teeth were removed. The patient healed
well and the self-abusive activities stopped, resulting in healing of the
candidiasis and elimination of the need for medication.
Medicare denied payment for hospitalization and anesthesia charge
because the dental care is not a covered service in the Medicare policy
verbage. Parents of this child were billed approximately $6,000 for these
services.
DEBRA - A TRANSITION FROM AN INSTITUTIONAL SETTING
Nursing Matters, January 2006
Debra enriched the lives of many persons in very simple yet complex ways.
Independence, perseverance, a flexible attitude, and personal
communication-traits she exhibited - traits needed for a successful
transition. Along with her parents, she worked with the Dungarvin team and
proved that the transition from an institutional setting to a community
home can be a successful venture with the right preparation and
coordination of resources.
Since the age of four, Debra lived in institutional settings. Two of
her biological sisters, who also had Gorham's disease and moderate mental
retardation, lived in the same setting. Both passed on before her - one
from septicemia and the other from Cancer. As the current institution
Debra called home was closing its doors, we had an opportunity to meet
Debra and make plans for her to transition to the community. The challenge
was to develop a plan of care that could safely support her in a community
setting. Gorham's, we found out, was a rare bone wasting disease and it
required pivot transfers to put the least amount of stress on her joints.
She also had osteoarthritis, scoliosis and musculoskeletal deformities
bilaterally.
We first met on a dreary October day in 2002. Walking into the long
hallway of this facility, our first impression was a lady of small stature
sitting in a wheelchair that was too large for her 4 foot 9 inch frame.
Her shoulders were in hyperextension and her arms were visibly bruised
from bumping the wheel in order to propel her chair. Her eyes were flat
without any sparkle. Her hair was scraggly, her clothing did not match,
she had on a striped shirt and checkered pants. She should have had an
orthotic shoe for her left foot. We knew her left leg was shorter than her
right because prior to age 4, the leg was broken as a result of her
darting into traffic and being run over by a truck. Her records indicated
she should have a hearing aide, dentures and glasses, none of which was
visible on inspection. Debra communicated with gestures and some single
words. She understood one-step commands and mastered some sign language
she mixed in with her gestures. Truly, she understood more that she could
express. She had some upper body strength, she could do a pivot transfer
with one to two-person assist, but overall she was wheelchair bound.
We asked Dad what goals he had in mind for his daughter. Dad wanted one
of his three institutionalized daughters to live a happy life in the
community setting. His second request was to have people spell her name
correctly. Her stepmother wanted her to wear clothes that coordinated.
Time and time again, they would bring Debra a new outfit on their weekly
Sunday visits, and the next week, the clothes from the week before, shirt
or pants, were missing.
First, we obtained a hemi wheelchair that was the right size with an
anti-sling cushion. She came for "get acquainted meals" and
overnights and started a relationship with her four new housemates. The
housemates were at different levels of cognitive and social development,
but they communicated with each other in their own fashion. She appeared
happy in the house, the neighborhood and her bedroom. We contracted with
Health Reach to come to the house for home assessment needs. This enabled
us to put in place a transfer disc; additional grab bars needed in the
bathroom for pivot transfers, a replacement orthotic shoe and home ROM
program. The program manager was diligent in establishing appointments to
replace dentures and glasses that had gotten lost in the institution.
Debra's contributions to this transition are traits that contribute to
any success.
Work ethic: She loved to go to work at Goodwill. Debra went to work
Monday through Friday. She had art classes three days a week. Her artwork
"fiery flowers" was chosen for the Southeastern Wisconsin
Goodwill spring greeting cards, along with her Christmas Dove for that
season. Debra is featured as one of the artists in the promotional flyer
for the greeting cards. She enjoyed group outings with her housemates,
trips to the zoo, picnics and shopping. We would often find Debra playing
her guitar, singing tunes that only she recognized. Debra became
discouraged when she could no longer work due to illness. It was arranged
that she could 'retire' and a party was held in her honor to recognize her
contributions. Debra enjoyed telling everyone that day it was "her
birthday."
Sense of humor: She went for a vision check and chose red frames. The
next day she was wearing a red pair of glasses as she pointed out to
anyone within hearing, "new glasses." That afternoon, I called
the program and congratulated them for getting glasses so quickly. Can't
be, we just placed the order. So I said, "Well she is proudly wearing a pair
of red glasses today." Upon investigation, she borrowed them from someone
at her work site.
Happiness in little things: Three months after her move to this home,
she was seated in the living room singing very loud and off key, something
that might have been "He's Got the Whole World." She had some of
the words, and part of the concept of the song, holding up a pretend
microphone like karaoke. Her eyes sparkled. Her hair was shiny clean and
in a new style that framed her face. Her clothes coordinated. Her
thumbs-up was her sign of happiness along with the "V" for peace
sign that she used often. She was content and happy in her new home.
It was not until late in 2004 that Debra began showing signs of
decline. Cysts formed in her joints that were painful and required
draining. Nurses worked with medical supports to provide pain control and
comfort. Her bed was converted into a day bed and moved into the living
room. Debra, because of her independent nature, was not safe to stay alone
in her room, as she would try to get out and perhaps fall. As she got
weaker, staff became more creative in providing comfort and dignity while
keeping her in her own home.
Her ability to acclimate and belong to the family of care providers and
her four housemates, afforded her a successful transition from institution
to community.
Debra, with the support of her home caregivers, her parents and nursing
supports, passed on with dignity to her next adventure in July 2005.
NEW SHOES
I am a Corporate Guardian Representative through my job at
ARC-Milwaukee. I work with an elderly woman in her 80's who also has
mental retardation and severe foot deformities. Her podiatrist did not
order custom made shoes to fit her needs, but rather, ordered a
"generic" version that were more a "one size fits all"
orthopedic shoe, even though Medicaid or Family Care (at this point) would
have paid for custom-made shoes. This person had accumulated some money
and needed to spend down. Custom made orthopedic shoes would cost her
approximately $1200. She could not get these shoes without a prescription.
I called her podiatrist who refused to write an order for custom made
shoes. After his refusal, I contacted her primary physician who gladly
wrote the order and mailed it to me. I was then able to take my ward to
Stan's Fit For Your Feet and have shoes made for her. She has not
complained once of foot pain since getting these new shoes and shows them
off to new people when she meets them. Without a concerned and involved
guardian, I feel this person would have continued to receive substandard
foot care that did not meet her needs.
AFTER CARE FOLLOW UP
F burned his hand. He had medical treatment and surgery. Healing was
proceeding nicely. He transferred to a different group home. His hand
began to turn redder and become almost "scaly." Work case
manager called group home. They were administering doctor prescribed cream
as instructed. F was having an allergic reaction to the cream. When he
returned to the doctor, treatment changed and all is improving.
ADVOCACY STORY
I have a 21-year-old patient "Pam" with Down Syndrome. She
recently moved out of her parents' house and in with a male roommate who
is also cognitively delayed. Pam is her own guardian and is fairly high
functioning albeit quite naïve. Over the past year, I have been
discussing sexuality with her and have started her on birth control. She
mentioned that her and her roommate watched a movie on the Discovery
Channel where babies come from and they have been experimenting with
petting and oral sex but not coitus as far as I know. We were discussing
likes and dislikes one day when I said, "Why don't you tell
"John" that you don't enjoy that." I was surprised when Pam
responded, "I am afraid that he will hold me down again." I
immediately went alert. Although I described in several ways, she was not
able to grasp the abstract concept of abuse. I tried to set up a safety
plan in case there were further incidents, but she didn't seem to identify
any harm. She responded, "If I got hurt and was bleeding, I would
call you because I would need a doctor." She didn't comprehend the
dangerous situation, although she admitted she didn't enjoy being held
down.
As a health care provider, I was in a difficult situation; a consenting
adult, over 21, who is her own guardian. Not a reportable case, but I
still worry about her.
HEALTH CARE STORY
A family that I am working with has a 17-year-old son with cognitive
delays and receives straight Title 19. This boy started seeing a therapist
for some behavioral issues and after five sessions, the therapist came
back to the family and said that he had not yet been paid from Title 19
and that he cannot continue to serve the son without being paid. The
family was forced to start over with a new therapist.
HEALTH CARE PRACTITIONER EXPERIENCE - A STORY
I was employed for several years as a direct service worker serving adults
with developmental disabilities. One of my clients, "Sheila" had
Cri du Chat syndrome and was diagnosed severely mentally retarded. Sheila
wore a helmet all the time, except when asleep because she had a
propensity to bang her head when agitated. Sheila was living in a foster
home situation with the same woman from birth to age 30. Her foster mother
was very aged by the time Sheila was 30 and her care was suffering because
of it. Sheila had the same helmet from age 19 to 30 and it was getting
very worn. Her foster mother was unable to get her to a doctor for a new
prescription for a helmet so I agreed to take her.
Sheila and I went to see a pediatrician because it was the only
healthcare provider that took Sheila's Title 19 insurance and the only
place I could get an appointment for her. Our experience with the doctor
was both positive and negative. The doctor clearly did not have much
experience with an adult with developmental disability. Initially, he
thought that she was my daughter and had a hard time dealing with her
nonverbal communication. He kept addressing her in a loud voice (as used
for a baby) and appeared frustrated when she did not respond, despite my
telling him that she was nonverbal.
Finally I stopped his examination, told him that I was not her mother,
but her direct service worker, that she needed a new helmet due to head
banging behavior and that she did not talk at all. He seemed to understand
and then carried on his examination very sensitively. He continued to
address Sheila directly and then pose questions to me. He treated us as a
team and took a lot of time explaining, in depth, about the different
kinds of helmet options Sheila would have. We finally decided on a helmet
and returned several weeks later to pick it up, the doctor remembered my
explanation of Sheila and was very sensitive and kind to us.
Though the situation seemed a bit frustrating at first, it turned out
to be a very productive and positive health care experience for both Sheila
as the patient and I as her caretaker.
CASE STUDIES ON ISSUES OF HEALTH CARE TREATMENT
CS had hip pain and a limp. Tylenol was given for the year she attended
our program. Cancer diagnosed too late, died within weeks.
DD did not complain of pain, never did. At the funeral of CS, she
finally said her back hurt. Cancer diagnosed too late for treatment, died
within months. Someone should have been aware she had a high tolerance for
pain and hated to miss work. Routine X-ray would have caught this when
still possible to operate.
STORIES OF INDIVIDUAL ATTEMPTS TO ACCESS HEALTH RELATED
SERVICES
Client X has a developmental disability, with moderate to severe mental
retardation, a seizure disorder and behavior issues. Up until this
client was 18 or 19, he had been seeing the same psychiatrist,
psychologist and neurologist. These professionals were very familiar with
Client X. Once Client X started receiving Title 19, Client X's
psychiatrist and psychologist were no longer able to provide care to
Client X since they did not accept Title 19. When Client X came onto my
caseload, Client X's parents were unable to produce a current
psychological evaluation needed for case coordination. Client X's father
contacted the previous psychologist who referred Client X's father to
another psychologist who supposedly accepted Title 19. When Client X's
father contacted this professional, the professional stated that he did
accept Title 19; however, Client X's father would have to pay upfront the
entire Title 19 reimbursable cost of the psychological evaluation just in case Title 19
did not accept the claim. If Title 19 did accept the claim, Client X's
father would get his money back. Currently, Client X has been enrolled in
a Title 19 HMO and a search for a new psychologist and psychiatrist is in
progress.
INADEQUATE MEDICAL CARE
I am working with a family that has twin boys who are 16. They are both
diagnosed with cognitive delays and receive straight Title 19. Their
mother's complaint is that she cannot find good, quality medical care for
her boys. She has a difficult time finding and liking a doctor that
accepts Title 19. She's been provided a list of doctors that accept Title
19, but when she calls to make an appointment, she is told that the office
is not accepting new Title 19 patients. Their mother understands that the
doctor's reimbursement rate is inadequate and thinks it is unfair that her
boys have to receive poor care just because of it.
DENTAL CARE - HARD TO FIND
I know of a client in his 30's that has had a family dentist since childhood. The
client has a mental retardation diagnosis and had both a severe accident and a stroke
that left him partially paralyzed on his left side and significant
difficulty speaking. Due to his inability to take adequate care of his
teeth and his frustration with allowing others to do it for him (without a
battle), his teeth have quickly deteriorated and all of them need to be
removed.
His lifelong family dentist accepts Title 19 but does not perform the
level of oral surgery that this client now needs. After months, an
appropriate dentist that performs the needed procedure and accepts Title
19 was found. Unfortunately, the client had a "tantrum" at the
consultation meeting and the dentist refused to work with him. So the
search is on again for another dentist. In the meantime, the family is
being told about all the extra complications that could develop if the
procedures do not happen soon.
HEALTH CARE ISSUES
I have been a recipient of Family Medicaid (I think that's what it is
called now…this is one of the problems…I never really know what I'm a part of). I do know that it is Title 19 and through an HMO. The first
problem I encountered when I went on this insurance was that the primary
doctor I had been using was not part of the HMO. I understand that doctors
and clinics are free to choose what insurance they will participate with,
but in this instance, I had gone through several medical problems and had
built a strong relationship with my doctor who I could no longer see.
Finding a new doctor was like closing one's eyes and picking from a list.
The doctor I have now is OK, but the relationship has never come close to
the one I previously had.
The next situation: My caseworker went on vacation and my insurance
lapsed because he did not update it. Due to this, at least one of my
medications was not covered because I was considered a newly enrolled
participant again…previous to this, I had gone through several other
medications that must be used first…because of the lapse, I was told I
would have to do this again. What is the sense in making someone use
medications that they know don't work, and sometimes exacerbate the
conditions they were prescribed for in the first place. I did contact an
advocate who told me it should be covered, but no one ever worked with me
to ensure that this happened…due to this, I ended up not taking the
meds, and often ended up in the emergency room to get treatment that could
have been avoided if I had access to the correct medication in the first
place.
Current situation: I no longer qualify for Family Medicaid because my
daughter is not currently residing with me. I am a student, I have little
ability to hold outside employment during this time, I may not qualify for
GAMP (General Assistance Medical Program) because I may end up being unemployed during my schooling, and may
yet again lose the ability to see my primary health care provider. There
seems to be little or no help for someone in my situation, and I am
frustrated because there are medications that I should be able to
continue, but I will be unable to afford, and just because I do not have a
child in my household at the moment, I will be forced to not take
my medications which may interfere in my success with school and life in
general. If I need to access health care services, I may end up with bills
that I cannot pay, or I will avoid seeking services until it is so bad
that I have no choice…not really what one would like to see, but with
very little money and no other support…what is one to do?
HEALTH CARE NEEDS NOT MET
My client is a 34-year-old female with a TBI and multiple health care
needs, including a rare chronic yeast problem affecting her entire immune
system. About 2 months ago, her specialist immunologist moved to another
state without giving a referral to another physician, despite her
repeated phone calls to this doctor, his nurse and his clinic/hospital and
calls from her primary physician and her psychotherapist. To this day, she
has been unable to locate another physician who knows anything about this
condition and takes Title 19.
This same client has multiple dental needs. For unknown reasons, her
teeth have become soft and chip frequently. She has seen several dentists
who take Title 19 as well as the Marquette Dental School, to have teeth
fixed after chipping. Each time the repair does not last. She has been
forced to see a dentist who does not accept her insurance to have a front
tooth fixed after the previous repair broke less than 1 hour after leaving
the Title 19 dentist's office (keep in mind that she saw this Title 19
dentist several times as the repair broke more than once). This repair
cost more than $200 and has lasted more than 4 months, longer than any
other repair she has had done. She has now been seeing this private
dentist on a cash basis to repair other teeth, as she does not trust the
Title 19 dentist and the work done by Marquette Dental School has also
failed. Fortunately, she has a special needs trust that can pay this
expense. Most others do not have this luxury.
My client also had to pay what Medicare did not pay for a back surgery,
as she was unable to find a neurosurgeon who accepted Title 19. This
surgery had to be performed twice. Thanks to the trust, she did not have
to figure out how to pay the 20% that Medicare did not pay.
THERAPIST NOT PAID - SESSIONS DISCONTINUED
A family that I am working with has a 17-year-old son with cognitive
delays and receives straight Title 19. This boy started seeing a therapist
for some behavioral issues and after 5 sessions, the therapist came back
to the family and said that he had not yet been paid from Title 19 and
that he cannot continue to serve the son without being paid. The family
was forced to start over with a new therapist.
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Last Revised: January 24, 2008 |
