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ONWARD ~ and ~
UPWARD
Judith Florian, R.N.
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Featuring articles and
discussion of diverse topics and issues, including:
Disabilities, Home Health Care, Sexual Abuse of Children, and Advocacy.
POPULATION RECEIVING
HOME CARE ~
DEFINING THE CONSUMER
USING NATIONAL
STATISTICS
In February 2004, the National
Center for Health Statistics (NIHS) conducted the "National
Home and Hospice Study," which was updated in 2005. Here I will
present some of the important statistics from the 2005 study.
The data was collected on about approximately 1.3+ million
(1,355,300) persons receiving home care in the USA in 2004. Of that
total, almost 30% (29.5% or 400, 100 persons) were under 65 years of age,
with the majority, almost 70%, were over 65 years old (70.5% or 955,200
persons). The total figure seems an under-reported number for the
total of ill or disabled persons, considering there are 300 million persons
alive in the U.S.A. But, other ill and disabled persons were not
counted, such as those in nursing homes and in Assisted Living situations,
which would more accurately reflect ALL persons who are ill and disabled.
However, this study focused on Home and Hospice Care, which is the intended
focus for this website. Still it seems the total of Home Care patients
is low in this study. The 2005 chart data of estimates based on
interviews with non-institutionalized citizens, however, shows a relatively
stable number of about 6 to 7 percent of adults age 65 who needed help for
personal care (ADLs) - this has remained about the same between 1997 and
2004*. (Data has a 95% reliability.) Those of age 85 or older
were at least 6 times more likely (20.6%) to need ADL assistance than those
of age 65. Between ages 65 and 85, more women than men needed help.
If you want to review the 2005
Early Release data used, visit the NCHS-NHIS website to see the PDF
files. [NOTE: * The 2005 data reflects data, still between 6 to 7%, is
only based on interviews conducted between January to June 2005, so it
remains to be seen whether the figure remained constant or changed through
the end of 2005.] Again, the 1998-2005 data is specific for over 65 or
older and does not include any data for adults under 65 years old.
In the 2004 data, just over 30% (30.2 % or 385,500) of the total 1.3+million
persons lived alone, but the study did not break this down by age groups.
A large portion, 1,094,900 or 80.8% had a primary caregiver, and almost 76%
(75.9% or 831,100 lived with the primary caregiver, typically the spouse,
child or child-in-law, other relative or parent, in that order. (Paid help
and the category of neighbor/friend/ or unknown caregiver would be, for the
majority, were living with non-family (4.3%) or unknown living arrangement
.) Most patients still need external help, even if the primary
caregiver is a spouse.
Page 4 of the study describes the population break-down by
type of payment used. Of the 1.3+ million:
710,000 paid by Medicare - Medicare often is the
primary billing source, if this is the primary carrier between 2 types of
insurance (like between Medicare and Medicaid). Also, if a patient has
Medicare and that patient has a "skilled need" requiring nursing
visits, the patient's case is typically billed under Medicare.
277,000 paid by Medicaid - This number seems low for Community Based
Services (CBS) or Home Care (HC), especially as a nationwide statistic.
235,000 paid by private insurance, or self/family - Private insurance
includes VA (Veterans Administration), some Railroad or Steelworkers health
plans or other private insurance. "Self/family" indicates
"private pay" status, when the patient or family pays 100% of all
home care charges. Home care fees can be quite high; few patients
& families can absorb these costs for a long period of time.
133,200 all other payments - including patients unable to pay,
or who had no charge for care, or those whose payment "source not yet
determined or approved." Sometimes after "opening a
case" (the formal paperwork process of admitting a patient to home care
services, there can be a short period of time when the office has not yet
received approval by one of two or more insurances held by the patient.
This is not unusual. There can also be cases where the office must
make phone calls to be sure a particular diagnosis is "covered" by
the patient's primary insurance. This is not unusual. These
delays explain, in part, a couple circumstances where payment source would
be listed as "unknown."
600,900 had personal care, but the break-down of data is confusing
break-down specifies only 476,400 received personal care
"services"
other services include: continuous home care; companion;
homemaker-household; transportation; respite care.
1,017,900 total had medical or skilled nursing (did study include
non-skilled?) - page 7
On page 8, it says receives no help from agency 660,200 in one to six areas
of ADLs (Activities of Daily Living). The 660,200 number given as
receiving no help from the agency has a footnote which says: Includes an
unknown number of patients who were bed bound or received help only from
non-agency persons." The bed bound statement is doubly confusing as to
why these patients did not receive agency help.
The study lists the following numbers of patients needing
help in these six areas of ADLs.:
bath or shower 838,200
dressing 730,600
eating 181,300
transfers 494,600
walking 435,100
toileting 376,000
The IADLs were listed thus:
light
housework, 628,800
preparing
meals, 384,900
taking
medications, 355,000
shopping for
groceries or clothes, 247,200
using the
telephone, 56,300
managing
money 41,000
Activities of daily
living–refers to six activities (bathing, dressing, transferring,
using the toilet room, eating, and walking) that reflect the patient's
capacity for self-care. The patient's need for assistance with these
activities is measured by the receipt of help from agency staff at the time
of the survey (for current patients) or the last time service was provided
prior to discharge (for discharges). Help that a patient may receive from
persons that are not staff of the agency (for example, family members,
friends, or individuals employed directly by the patient and not by the
agency) is not included.
Instrumental
activities of daily living–refers to six daily tasks (light housework,
preparing meals, taking medications, shopping for groceries or clothes,
using the telephone, and managing money) that enables the patient to live
independently in the community. The patient's need for assistance with these
activities is measured by the receipt of help from agency staff at the time
of the survey (for current patients) or the last time service was provided
prior to discharge (for discharges). Help that a patient may receive from
persons who are not staff of the agency (for example, family members,
friends, or individuals employed directly by the patient and not by the
agency) is not included.
Length of
service–is the period of time from the date of most recent admission
to the date of the survey interview (for current patients) or to the date of
discharge (for discharges). Length of service for current patients tends to
be underestimated for several reasons. Patients with a very short length of
service are underestimated in the sample because they are less likely to be
enrolled with the agency on any given day than are long-term users. Length
of service for discharges tends to underestimate patients who receive care
for long periods of time because they are less likely to be on the agency
discharge list on any given day than are those with short lengths of
service.
Average
length of service–is computed by summing the number of days of service
and dividing the result by the number of residents or discharges within the
particular category. This statistic is sensitive to extreme values (e.g.,
very low or very high values) and, therefore, best used with data that are
symmetrically distributed. The distribution for length of service is skewed;
therefore, both mean and median values are presented.
Median
length of service–is determined by identifying the midpoint of the
distribution (50 percent of the cases fall above and below this value). This
statistic is not sensitive to extreme values and is used when data are
skewed. The distribution for length of service is skewed; therefore, both
mean and median values are presented
What is the difference between an ADL & an Instrumental ADL?
What is the split between disabled with a medical diagnosis, versus non-disabled
with a medical diagnosis? Only vision and Hearing impairments were listed, but not
other disabilities.
Of the 1,355,300 million total patients in this study, the mean length of
home or hospice care service was 312 days, while the median length of
service was 76 days. Since hospice care is for the terminally ill, the
"mean and median" statistics given can be misleading; the
terminally ill population would typically use the fewest days between
hospice care and home care patients. Some terminally ill may have
longer stays than other terminally ill patients; In my own nursing, the
shortest number of days for a terminally ill patient was 1 full day plus a
few hours, from time of discharge from the hospital until the man's death;
the longest terminally ill patient that I cared for was just short of a year
of ongoing visits, multiple times a week, and daily in the last month of her
life. Non-terminally ill patients can have wide fluctuation in the
"average" number of days, depending on their acute need for care
(acute diagnosis) versus a long-standing diagnosis that does not need
ongoing nursing intervention or teaching. For example, an acute need
may be a diagnosis of hip fracture with several other diseases; once the hip
fracture is healed, the patient may not need further visits for their other
diseases as long as those diseases remain stable prior to home care
discharge. Sometimes, patients with multiple diseases may be admitted
and discharged from service more than once, reflecting changes in the status
of their usual diseases, or the addition of another acute illness or injury.
So my point is, those who are chronically ill usually end up with more days
of service than patients who have a terminal illness, especially when the
terminally ill patient is rapidly deteriorating. The stats given,
though, do not make any distinction between the two types of patients.
The study did not indicate the number of terminally ill who die while in the
care of a hospice or home care program, nor did the study give number of
deaths of any group of patients receiving short or long term community based
home care.
Part of the problem with Community Based Home Care (CBHC)
programs is that groups or agencies representing certain patient populations
are left to fight over the program dollars. And, of course, those with
the largest advocacy groups behind them get a larger piece of the pie, a
piewhich is not as large as needed to provide for all potential patients,
especially with rising health care costs. One study I read is the
"Medicaid Home and Community-Based Long Term Care – Trends in the
U.S. and Maryland" funded by the National Institute of Disability and
Rehabilitation Research, Department of Education, Information Brokering for
Long Term Care, The Robert Wood Johnson Foundation.
In this study, the Medicaid Waiver Expenditures by Recipient
Group in 2001 based on total expenditure of $14,218,236,802 was broken down
in this manner of actual spending (presumably this is based on nationwide
figures):
MR/DD 74%
Aged/Disabled 17%
Disabled/Phy. Disabled 4%
Aged 3%
Children 1%
TBI/Head Injury 1%
AIDS < 1%
Mental Health < 1%
Kitchener, Ng & Harrington, 2003. Medicaid HCBS Program Data. SF: UCSF
But, the same report included figures on "Participants
by Recipient Type" in 2001 based on a total number of 832,915.
Participant types were broken down thus (presumably this is based on
nationwide figures):
Aged/Disabled 41%
MR/DD 39%
Aged 11%
Disabled/Phy. Disabled 5%
AIDS 2%
Children 1%
TBI/Head Injury 1%
Mental Health < 1%
Kitchener, Ng, and Harrington, 2003. Medicaid HCBS Program Data. SF: UCSF.
This data would be interpreted that the MR/DD population
represents 39% of the study population of 832,915, but used 74% of the
available resources of the total expenditure of $14,218,236,802.
The aged/disabled population had a higher number of patients in need at 41%,
but only had 17% of the total dollar expenditure. The
Disabled/Physically Disabled Group (presumably minus the aged in the
statistics given - but this group was not well defined in this study's
report, as to age etc), represented 5% and used just 4% of allocated
funding. Adding the Aged/Disabled with those of
"Disabled/Physically Disabled," the group would represent 45% in
population and used just 22% of funding! Again, the 39% MR/DD used
74%, more than three times higher than the larger group of disabled
citizens!
The bottom line is, various population groups in need should
not be left to figuratively fight each other for a fair share of the
available dollars for long term community-based care needs. Having
groups fight in this manner brings an image to mind of ill, aged, disabled,
mentally deficient or physically deficient groups of people brought on their
knees (or wheelchairs!) into their State's "Medicaid Coliseum"
where each is given a bullhorn and boxing gloves. They use their
bullhorn to yell to lawmakers sitting high above the coliseum things like:
"Help Me!"
"Help Us!"
"Help MR-DD clients - NOW!"
"Help MS sufferers -NOW!
"Help our Senior Citizens - NOW!"
"Help those with Congenital Disabilities - NOW!"
"Help those with Disabilities - NOW!"
"Help the ill and infirm - NOW!"
And so on... And while each group screams as loud as
they can, they must resort to using their boxing gloves on other persons and
other groups as they fight to survive in this sea where everyone has such
significant problems that help from the Medicaid Coliseum is ESSENTIAL!
Each group, with any lobbying group they have as representatives, tries to
fight their way to the front where they can be seen and heard better.
Most lobbying-spokesperson groups are physically and mentally healthy, yet
THEY too get to have bullhorns AND boxing gloves and are actually seen
punching patients who are not physically or mentally functioning at 100%.
Is it any wonder the allocation of funds shifts to patient populations who
have large patient representative groups or agencies?
Instead of the "Medicaid Colliseum," lawmakers
should strive to make State Medicaid more evenly distributed. Long
Term Care Community Based programs should be categorized, rated, and
reimbursed on a scale similar to Medicare break-down of medical services.
A CAT-Scan without Contrast Dye costs $2,380.00 (for example). A
patient who needs a total bed-bath should have a price assigned to that
service, and prices assigned to every service, with medical diagnoses
weighted as the highest paid. I imagine them meeting before a
large model of the "Scales of Justice" where each "ADL"
(activity of daily living) is represented by a gold weights of 1 to 5
pounds. The ADLs could be broken down like this in my fantasy:
(Pounds in gold weights)
Needs help with....
Bathing/showering = 15 pounds
Washing hair (for females) = 10 pounds (males with short
hair = 1 pound)
Shaving (men = face etc women=underarms &
legs) = 5 pounds
Preparing meals = 10 pounds (food is important)
Help to actually EAT the food or to drink liquids = 15
pounds
Walking, transferring, lifting by others without Hoyer Lift
equipment (needs physical help from another person to physically move their
body, excluding wheelchair use -- this category is for activities the
patient has to do to get around by themselves without a chair) = 50 pounds
(because of wear & tear on the patient's body plus wear & tear on
the helper's body)
Regular wheelchair = 10 pounds
Motorized wheelchair= 40 pounds... add 3 pounds for every
assistive device attached to the wheelchair
Can go on toilet but may need help with clothing = 1 pound
Needs help to get on and off toilet, plus needs help with
clothing = 20 pounds
Urinary catheter care - 15 pounds
Feeding tube - 15 pounds
Ostomies of any kind - 15 pounds
Dressing changes daily requiring "skilled nursing"
- 25 pounds
Lotions, non-sterile dressings such as first-aid - 1 pound
Decubitus ulcer - 25 pounds (add 5 for each different body
site with an ulcer)
Diabetic + diabetic foot care - 15 pounds
Acute heart or lung conditions causing patient to be unable
to walk 1 block (or less) = 25 pounds
Use of continuous Oxygen = 25 pounds
Forgetfulness every day = 25 pounds
Forgetfulness, occasional = 1 pound
Mental deficiency = 30 pounds
Cannot do own shopping - 10 pounds
Needs supervision for shopping - 5 pounds
Can handle own money, banking, bill-paying - 0 pounds
Cannot do own banking (outside the house activity) - 2
pounds
Cannot handle own money, banking, bill-paying (all of these
together) - 25 pounds
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Facts....Do You Know...
* Many Aides state they are
understaffed in nursing homes and that they would never admit their own
relatives into nursing home facilities, due to the poor care the Aides
have witnessed.
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The title "Onward ~ and ~ Upward" is a
"motto" I used as a teenager and young adult --- then forgot about for
a number of years. I feel it is a fitting motto to strive for and a
fitting title for the topics of this website.
(c) Judith Ann Florian
159 E. Main St.
Girard, Ohio 44420
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This page was last updated on Saturday, April 22, 2006 15:33
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