Title: Analysis of Medicaid private duty nursing for children with special health care needs
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Permanent Link: http://ufdc.ufl.edu/UF00091302/00001
 Material Information
Title: Analysis of Medicaid private duty nursing for children with special health care needs
Physical Description: Book
Language: English
Creator: Shenkman, Elizabeth
Publisher: Institute for Child Health Policy, University of Florida
Place of Publication: Gainesville, Fla.
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Bibliographic ID: UF00091302
Volume ID: VID00001
Source Institution: University of Florida
Holding Location: University of Florida
Rights Management: All rights reserved by the source institution and holding location.

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Full Text


Prepared by:

Elizabeth Shenkman, PhD
Associate Professor, Department of Pediatrics
Associate Director, Institute for Child Health Policy


Home health care for children with special health care needs (CSHCN) has been called a
"medical and social innovation" that has "potential risks and benefits, inevitable uncertainties, and unique
ethical considerations."' An estimated 50,000 children use home health care services daily, with 60% of
these services for skilled nursing care.2 Recent national cost estimates specific to children are not
available. However, the Health Care Financing Administration (HCFA) reported overall home health
care costs for all ages at $22.3 billion in 1999. In Florida, costs for the private duty nursing component of
home health care is reported to be $100 million for State Fiscal Year (FY) 2000-2001.
The purpose of this report is to present:
A summary of the literature on private duty nursing for children and relevant case law on

private duty nursing,
A summary of interviews conducted with staff in five different states about their private

duty nursing programs,
A summary of telephone survey data collected in 1997 with families whose children are

enrolled in Children's Medical Services (CMS), Florida's Title V CSHCN Program
addressing their unmet health care needs and out-of-pocket spending for home health
care services; and
An analysis of current expenditures for home health care and private duty nursing among

CMS enrollees and projections of future spending.


Over the past 30 years federal legislative action has greatly influenced approaches toward children
with special health care needs (CSHCN). 3 For example, in 1967 Congress mandated that states must
provide Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) services through their
Medicaid Programs. EPSDT services encompassed screening of individuals under the age of 21, "to
ascertain their physical or mental defects, and such health care, treatment, and other measures to correct

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or ameliorate defects and chronic conditions discovered thereby, as may be provided in regulations of the
Secretary." However, in 1989 Congress passed the Omnibus Budget Reconciliation Act of 1989
(OBRA'89). As part of OBRA'89, preventive care and disability-related services were addressed.
Significantly, as it relates to CSHCN, the law required states to provide all medically necessary services
that were eligible for federal financial reimbursement to children whose health care screens revealed
problems. These services had to be provided even if they were not otherwise covered under the state's
Medicaid Program.4'5 This particular provision is a point of serious contention with some state agencies,
which believe that it greatly limits their ability to control Medicaid spending.
The recent literature on issues related to home care, private duty nursing, or personal attendant
services for CSHCN is very limited. One has to turn to literature that is 10 to 20 years old to find in-
depth discussions of home nursing services. In the 1980's Lou Ann Aday conducted a national program
evaluation to assess the outcomes of care for ventilator-assisted CSHCN who were transferred from the
hospital to home.6 This evaluation is one of the most comprehensive assessments of pediatric home care,
to include private duty nursing, available. As part of the study, Aday and her colleagues reported that
home care costs were significantly lower than hospital costs for these children. Hospital care was used as
a basis for comparison because this was the only other alternative for the children's care. Others have
noted that home care costs are less expensive than hospital costs only if the parent is assuming part of the
caregiving responsibility. If a nurse provides the majority of home care, the home care costs approach
and sometime exceed hospital care costs.7
Other early work that considered the financial aspects of children's long-term care needs focused
on the inadequacy of most benefits packages for CSHCN and the out-of-pocket spending that families
often experience when caring for these children.8 Recommendations from this early work focus on
ensuring that families and their CSHCN are given appropriate support and services and that benefits
packages are structured to best meet their complex needs.
Much of the current literature that might be applicable to understanding issues associated with the
provision of private duty nursing for CSHCN fall into the category of long term care (LTC) provision.
The majority of this literature focuses on adults and not children. None-the-less the LTC literature
documents the rapidly escalating Medicaid expenses for these services, which include the provision of
long-term physical, speech and other therapies, long-term institutional care, and long-term home care.
States often use community-based waivers (1915 C waivers) to design programs to provide
services for the elderly and persons with physical and developmental disabilities in the home and
community.9 Home and community-based LTC arrangements continue to be seen as the best
environment to deliver care as opposed to institutionalizing Medicaid-eligible individuals. In 1998,
Medicaid accounted for 17% of total spending on home health care in the United States. To control these

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expenditures, states are increasingly exploring options of providing a range of LTC services, including
home health and personal care services, in a managed care setting. Texas and Michigan are providing
such services in managed care environments under 1915(b) and 1915(c) waivers, which typically include
limiting freedom of choice for the families selecting service providers.10
In a four state study of children receiving Medicaid and incurring $10,000 or more in health care
charges annually, Kuhlthau et al., documented that LTC expenditures accounted for 10% to 42% of the
total health care expenditures for this group of children. LTC expenditures were not well defined, but did
include facility charges, such as structured nursing facilities. Home health expenditures, which was not
restricted to private duty or skilled nursing, accounted for 4% to <1% of the total expenditures, depending
on the state." The authors noted that one of the uses of their findings was to help states plan for their
expenditures for these very high cost children.
In summary, with the exception of considering caring for CSHCN within managed care
arrangements, there is little in the current literature about how to address the rising private duty nursing
costs for this group of children. Some states have attempted to obtain modifications to OBRA'89 and
others are using 1915 waiver programs. Attempts to modify OBRA'89 have failed in the past and the
outcomes from states using 1915 waivers to address their LTC costs in Medicaid are not known.
Court cases about LTC issues have involved adults and usually also involve a unique aspect
associated with program eligibility. For example, a recent court case involving LTC for adults was heard
in Albany, New York (June 2000). The New York Court of Appeals upheld two lower court decisions
that the state cannot refuse to provide medical coverage for people needing long-term institutional care in
cases where the spouse refuses to turn the ailing person's assets over to the government.
Another recent case (1999) involved Florida's Agency for Health Care Administration (AHCA).
AHCA revoked home care nursing services for a five year-old child with autism, esophagitis reflux, and
dyspahgia on the basis that the services that the child needed were not "skilled nursing services." The
family challenged the decision. The judge ruled that skilled nursing was medically necessary for this
child because 1) the child's physician ordered the services, 2) there was a medical need for a nurse to
supervise the child's feeding to avoid choking, and 3) the child needed nursing services as prescribed by
the doctor to combat dysphagia.

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To learn more about states' experiences with private duty nursing in their Medicaid Programs,
telephone interviews were held with Title V CSHCN Program and Medicaid Program representatives in
six states. Table 1 contains a summary of the states selected for interview and the rationale.

Table 1.

States Included for Interviews About Private Duty Nursing for CSHCN in Medicaid

States Rationale

Michigan Michigan has done extensive working assessing health care use and charges for CSHCN.
They offer Medicaid fee-for-service (FFS) and capitated managed care programs for their
CSHCN. Thus, it was anticipated that analysis of their approaches would provide useful
information for Medicaid FFS and capitated environments.

Texas Texas has a unique program to identify CSHCN for referral to specialized case
management services. It also is a large and culturally diverse state with many
demographic similarities to Florida. Thus it is a good state for comparison purposes and
useful data in CSHCN's health care use and charges are available. Texas has a 1915(b)
and 1915(c) waiver.

Oregon Oregon is well known for their work identifying "medically necessary services". This state
tends to take a more restrictive approach to health care services for all its residents, when
compared to other states. Oregon provides "home follow-up services" for their CSHCN.
More information from a state that has taken a more conservative approach to funding
health care was determined to be helpful.

Tennessee Tennessee is well known for its TennCare Program. This managed care program carefully
monitors CSHCN's health care use and charges. Some view this program as a success and
others do not. This program is recommended for inclusion because it is highly managed
and there are reports that it has resulted in cost savings to the state. However, it is also a
controversial program.

Washington Washington has conducted detailed analyses of their CSHCN in Medicaid and likely will
State be able to provide useful information about these children. Moreover, for their CSHCN in
Title V, services are provided based on determining available resources and various payer

Arkansas Arkansas was selected for interview on the recommendation of Florida's Title V CSHCN
Program staff. Arkansas recently changed their approach to authorizing and providing
private duty nursing services for their CSHCN. Learning more about their reasons for
changing their approaches and what types of approaches they were using were determined
to be important for this analysis.

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In addition, interviews were conducted with state Title V and Medicaid staff in Louisiana based
on the recommendations of Title V CSHCN Program staff in Arkansas. The Arkansas staff believed that
Louisiana had developed some innovative approaches for caring for these children. Tennessee staff were
unable to provide detailed information at this time. CSHCN in that state do receive private duty nursing
services if it meets their medical necessity guidelines. All private duty nursing services are provided
within managed care.
An interview guide was developed to address the following:
1. Whether the state funds private duty nursing,
2. The benefit package and any limitations such as the number of total days in a year or the number
of hours per day that the service can be provided,
3. Eligibility criteria in terms of who receives the services and in terms of the amount that can be
4. Who does eligibility determination,
5. The number of children received private duty nursing for the last three fiscal years,
6. Expenditures on private duty nursing for children ages birth through 18 annually for the last three
fiscal years,
7. Contracting relationships with agencies providing private duty nursing,
8. The use of selective contracting for private duty nursing services, and
9. Alternatives to private duty nursing that the state has considered.

The interviews were conducted in March and April 2001. The participants were sent a copy of the
interview guide to review prior to the call and then were interviewed by telephone. One state was
required by their state policies to respond in writing and not verbally and to have the responses reviewed
by various administrators before the responses could be released to the Institute.


Table 2 contains a summary of the states responses to the topics listed above. The results are
described more fully in the subsections below.

Administration of the Benefit: All of the states participating in the interviews offer private duty
nursing services to CSHCN age birth to 21 meeting medical eligibility or other criteria. The states all
noted that they are required to do so as part of OBRA' 89. For three of the six states, the Medicaid

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Program administers the benefit. For one of these states, this is a recent change. In Arkansas, the State
Title V CSHCN Program had administered the benefit. However, due to rising costs, the administration
was moved to the Medicaid Program. The rationale for the move was that the Title V Program played too
much of an advocacy role and that the Medicaid Program would conduct more objective screening before
authorizing the service. For three of the six states, the benefit is administered through programs that are
specifically devoted to the care of children with special health care needs.

The Benefit Package: Three of the six states report limits to the private duty nursing benefit,
whereas three do not. The limitation to the benefit involves the number of hours per day that the family
can receive private duty nursing. Typically the family is expected to provide eight hours of care per day.
This requirement is most carefully specified in Michigan and the most liberal in Oregon. For example,
Michigan specifies that the family's eight-hour obligation cannot be met during a time when the child
would normally be at school or in a day care facility. Oregon will reduce their usual eight-hour family
care requirement to four hours, if the family is having trouble managing the child's care.
Michigan has specific guidelines that are used to determine the number of private duty nursing
hours the child can receive. These guidelines are considered along with social and family factors. A
summary of their guidelines is contained in Appendix A.
Similarly, Oregon assesses each task that must be completed when caring for the child and then
assigns a score, which is used to determine the number of hours of care the child will receive. For
example, a child with a tracheotomy and a 24-hour ventilator requires more care than a child with a
tracheotomy and no ventilator. The former child would receive a higher score and therefore more private
duty nursing care than the latter child. The child's care needs are reassessed regularly and the private
duty nursing hours adjusted to account for any changes in the child's condition (either improvement or
Three states indicate that they do not have any limitations. However, the average number of
private duty nursing hours reported by one state is eight and another is 12. The third state without benefit
limitations did not provide the average number of private duty nursing hours delivered. Interestingly,
Louisiana reports no benefit limitation. However, this state uses an outside company, Unisys, to
determine the amount of hours that are most effective for the child to receive. Unisys does receive
information from a decision team that plans the child's care before authorizing the number of private duty
nursing hours.

Program Eligibility: The program eligibility requirements are very similar from state to state.
The children all must be Medicaid eligible. Some states also require enrollment in their program for

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CSHCN. A physician must order the private duty nursing services and the child must have a documented
need for such services. States also require that the child have a designated caregiver. Typically the child
must also have equipment needs and the need for ongoing skilled nursing intervention. Appendix B
contains a summary of the eligibility criteria provided during the interview or through separate, additional
documentation from the states. The eligibility for all of the states were very similar.

Conducting the Eligibility Determination Process: The three states that use programs
dedicated to CSHCN to administer the benefit also conduct the eligibility determination process. As
previously noted, the Title V CSHCN Program in Arkansas used to conduct the eligibility determination.
Arkansas Medicaid now conducts this process. Texas recently established a Private Duty Nursing Benefit
Administrator Position. The person in this position works with a contracted authorization and utilization
review firm) to conduct eligibility determination, to monitor the benefit after it is implemented, and to
conduct ongoing quality assurance for the children's care.

Number of Children Receiving Private Duty Nursing and Expenditures: The typical number
of children receiving private duty nursing benefits for those states able to report annual figures was 160 to
250 cases. Texas reported over 1,200 recipients in 2000. Louisiana reported 540 cases over a five-year
time frame.
Two states were unable to report their expenditures. One state said they could not accommodate
the request and the other state said they would send us the information. For three of the states, it was
possible to calculate a per child expenditure, using the number of recipients covered and the total
expenditures reported for that year. The results varied dramatically from a high of $52,963 in Texas to
$25,000 in Oregon to $8,100 in Washington. It is important to note that these figures are for private duty
nursing only and do not reflect home visits provided by nurses on a short-term basis. With the available
information, it is very difficult to explain the differences in expenditures per beneficiary by state. It is
unknown if this is related to the acuity of the children, the cost of nursing services in the areas, the
provision of a higher number of nursing hours per day in some states as compared to others, or to some
other factors. Only analyses of claims and encounter files, coupled with more in-depth knowledge of the
state's clinical practices would elucidate the findings.

Alternatives: All of the states reported considering alternatives. Arkansas indicated that their
new approach to private duty nursing benefit management and eligibility determination was "the
alternative." As previously described, staff in Arkansas are hoping that the Medicaid Program will be
better able to control costs than the Title V CSHCN Program. However, there is some concern that

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families' needs are not adequately considered now that the Medicaid Program is making the decisions
about private duty nursing.
Michigan is changing its private duty nursing program. In their current program, they authorize
hourly nursing services and in addition, provide a certain number of skilled nursing visits per month to
add additional oversight to the in-home staff. Under the new program, the additional visits will no longer
be authorized.
Staff in Texas indicated that their primary concern is meeting the social and psychological needs
of families. They believe the current benefit is inadequate and only addresses the physical needs of the
child, leaving many other needs unmet. Texas wants to provide additional resources for families.
Similarly, staff in Washington said the goal is to have the resources to support families together and to
avoid institutionalizing the children.
Oregon is not pursuing other alternatives but indicated that better "exit points" need to be
developed. Staff participating in the interview believed that some children were receiving private duty
nursing benefits when they were no longer necessary. Finally, staff in Louisiana indicated that they were
exploring the use of personal care attendants to provide some of the care that skilled nurses are currently

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Table 2. Summary of Interview Responses
Item Michigan Texas Oregon Washington Arkansas Louisiana

Does state provide
private duty nursing Yes Yes Yes Yes Yes Yes
services as part of the
benefits available to

Who administers the The Children with The Medicaid The Medically Fragile The Department of As of January 1, 2001, Medicaid administers
benefit? Special Health Care Comprehensive Care Children's Unit Health and Social the Medicaid the Extended Home
Services Program Program. (MFCU) of the Services, Division of Screening and Health Services
(CSHCS) administers Children's Intensive Developmental Utilization Review Program.
the program In-Home Services Disabilities, Medical Program. The Title V
(CIIS) is the main Assistance CSHCN Program used
administrator of the Administration. to make the
benefit. determination. This
was changed to keep
the costs down.
Concern was raised
that this has reduced
the level of advocacy
and family oriented

Are there limitations Yes Yes Yes No No No
to the benefit?

Benefit limitations A caregiver must There are no caps, no A child may go home The average hour per Some parents sign a The average amount is
reside with those time limits and no cost from the hospital with day provided is 9 form stating that they 12 hours per day. RNs
under 18 years and limits. However, 24- 24-hour care but hours. The average are aware that private and LPNs are paid
must provide 8 hours hour care is not an within 4 to 8 weeks, it hours per month are duty nursing services $24.50 per hour and
of care/day. The 8 option unless a special is expected that the 290. RNs are paid $30 will decrease over personal attendants are
hours may not occur circumstance for care family will do one 8- per hour, which is time and their level of also used at $8 to $12
when the child would is authorized for a hour shift daily with cheaper than care responsibility will per hour.
normally be out of the short period of time. one to two weekends institutional care. increase. However
home (i.e., school). off per month if they most cases are so
For those 18 to 21, can get the coverage, complex that this is
there must be an If the family cannot not an issue.
alternate caregiver for care for the child, the
8 hours per day but expectation of 8 hours
this person does not is adjusted but never
need to reside there. to less than 4 hours.

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Item Michigan Texas Oregon Washington Arkansas Louisiana

Eligibility Must be Medicaid Eligibility Eligibility based on Home care must cost Not currently The current guidelines
eligible and require requirements specify medical criteria, less than institutional available, focus on the child
skilled nursing care.1 that the child must care and the child being "medically
require skilled nursing must be enrolled in fragile." This is
care that is continuous. Medicaid. A treating defined as a child who
physician must order has a medically
home care. complex condition
characterized by
multiple and
significant medical

Who conducts the The CSHCS program There is a Private The MFCU makes all The program The Medicaid A decision team is
eligibility makes all decisions. Duty Nursing benefit decisions about coordinator gives final Program gives final used to determine
determination process? administrator. Any coverage based on approval. approval, receipt of services.
child under 21 who is medical criteria. All The physician
on Medicaid has a assessments are prescribes home health
right to the benefit, if conducted by RNs. and an external
they meet eligibility company approves the
criteria, amount of hours the
family can receive.
There is a contracted
authorization and
utilization review
(UR) company and the
Private Duty Nursing
Administrator is a new
position that is
assigned to administer
the benefit and will
conduct more in-depth
quality assurance.

1 See narrative for more detailed discussion of eligibility criteria.

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Item Michigan Texas Oregon Washington Arkansas Louisiana

The number of 200-250 children are 1,230 recipients in There are 120 159 cases 2001 250 children receive Since 1996, 540
children receiving receiving these 2000 recipients. 158 cases- 2000 private duty nursing. children have received
private duty nursing. services at any given 1,157 recipients in 163 cases- 1999 services. Annual
time. 1999 167 cases 1998 breakdowns are not
1,254 recipients in available.

Expenditures for The state does not $65,145,296 in 2000 $3 million in 2000 $1,287,900 2001 Not currently Over the past 3 years,
private duty nursing have this information $60,273,304 in 1999 $2.5 million in 1997 $1,279,800 2000 available. $6 million dollars has
services. readily available and $64,751,919 in 1998 and 1998 $1,320,300 1999 been spent. Although
cannot accommodate $1,352,700 1998 the total Medicaid
the request due to the budget has decreased,
amount of staff work this area has increased
required to produce a and is expected to
report. continue to do so.

Contractual The services are There are 3 providers: They contract with 28 home health Medicaid certified Medicaid certified
relationships with provided under the the Texas licensed home health nursing agencies are regularly home health agencies home health agencies
agencies providing the auspices of a Medicaid Medicaid certified agencies, particularly used. The primary are used. are used. Currently
service. Home Health benefit. Home Health those specializing in quality assurance for there are 323 different
Thus the state reports Agencies, children's care. The the program is agencies that are used.
they are technically independently enrolled parents may hire conducted by the
limited to authorize registered nurses nursing aides Department of Health.
Medicare-certified (RNs), and themselves if the In addition, the
home health care independently enrolled doctor and the family Medicaid Fraud Office
agencies that also are licensed practical feel this is safe. is used as needed.
enrolled as Medicaid nurses (LPNs). MFCU then pays for
providers, professional nursing

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Item Michigan Texas Oregon Washington Arkansas Louisiana

On a case-by-case
basis some non-
Medicare and non-
Medicaid agencies
have been used due to
significant access
problems. Under their
proposed plan, they
will no longer be
limited to Medicare-
certified agencies. The
plan is to enroll both
agencies and
independent nurses
meeting proposed

Have you used No, but the state is No, some agencies are No No mainly because of No, there are not No.
selective contracting? planning to contract used more because freedom of choice enough providers.
with independent they specialize in issues. The private
nurses in the future for children and others do duty nursing is a non-
private duty nursing. not. However this is waiver benefit.
not considered
selective contracting.

Have you considered Michigan currently Alternatives have been Better exit points need Any alternative to The alternative was The state currently is
other alternatives? authorizes hourly considered ever since to be defined for the keep the family the newly examining the role of
nursing services. OBRA'89 was program. There are together is considered. implemented program. personal care
These will no longer established. The instances reported of The mission is to The state moved the attendants and seeing
be authorized in the primary concern in children playing prevent children from private duty nursing if there is more that
future and only private Texas is getting basketball with a nurse being institutionalized, program from Title V they can do.
duty nursing will be additional resources to on the sidelines, which If families are not able to Medicaid to control
used. families. Nursing is is not perceived to be to stay together, then costs. They also are
not sufficient and good for the state or foster care is sought considering using less
families have social the child. for the child. costly providers such
and psychological as personal care
needs that are not attendants to provide
being met with the some of the services
current system of care. that RNs provided.

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Children receiving skilled nursing services were identified using claims and encounter data
provided by CMS for 1997-1998, 1998-1999, and 1999-2000 (July 1 to June 30). In 1997-1998, 1,214
children were identified, 496 in 1998-1999, and 602 in 1999-2000. On average, these children were 5.8
years of age (standard deviation of 5.07). In terms of diagnoses, 18.7% of the children had various
congenital anomalies listed as their primary diagnoses, 31% had nervous system disorders, 10% had
diseases occurring in the perinatal period, 9% had respiratory conditions, and 6% had injuries. Other
conditions occurred with much less frequency. For example, 2% of the children had neoplasms, 2% had
digestive disorders, 2% had infectious diseases, 2% had endocrine or other metabolic disorders, and 1%
had muscloskeletal conditions.
Total health care use rates were calculated for the children. On average, the children had 5.25
health care encounters per month (standard deviation of 5.0). Thus there was great variability in the
children's health care use patterns.
There does not seem to be any clear trend in the number of children receiving skilled nursing.
The numbers fluctuated greatly throughout the three years of claims data. The types of conditions the
children had, their average age, and the average number of their health care encounters was relatively
stable across the study period.


In 1997, the Institute for Child Health Policy conducted telephone surveys with parents of
participants in CMS who were receiving supplemental security income (SSI) about their unmet health
care need and family out-of-pocket spending for health care services. Fifty-three families out of 353
CMS enrollees who were receiving SSI reported that their children received skilled nursing care in the
home. There were no unmet needs reported in this area.


The focus in the literature on LTC expenses in Medicaid is largely related to adults. Little
information is available about children, except from an advocacy perspective. States seem to have very
similar practices regarding their management of the benefit. The most stringent controls appear to be in
those states that require an outside group to determine eligibility and do not allow the entity providing
services to make the eligibility determination. Some states are also trying to substitute more personal

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attendant care for skilled nursing care. This is occurring in part due to expenses, but also in part due to
the national nursing shortage.
A small number of children in the CMS Program are receiving skilled nursing care and as
expected the health care use of these children is very high. Their monthly health care use is in excess of
the annual health care use for most children (i.e., 5 encounters per month compared to about 2.5
encounters per year). Families report no unmet need related to obtaining skilled nursing care for their
It is well beyond the scope of this report to assess appropriateness of services for the children
determined to be eligible for skilled nursing care. Because of OBRA'89, there are few alternatives related
to limiting this particular benefit. Children must receive those services determined to be medically
necessary. The state of Florida should review its eligibility determination process and consider using a
separate vendor to determine eligibility apart from the group delivering or coordinating services (if this is
not already the practice). Substituting less costly staff can be problematic from a quality of care
perspective and should only be undertaken if determined appropriate and safe by the health care providers
who best know the child.

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Appendix A A Summary of Michigan's Guidelines to Determine the
Number of Private Duty Nursing Hours a Child May Receive

Beneficiaries with tracheotomies receiving CPAP, BiPAP, or other positive pressure
mechanical ventilation: 12 to 16 hours per day;

Beneficiaries with tracheotomies but not receiving CPAP, BiPAP, or mechanical ventilation:
8 to 12 hours per day;

Beneficiaries with parenteral nutrition: 8 to 12 hours per day (Note: the medical fragility of
the child, especially regarding their fluid and nutrition status, and the age of the child are
important determinants in this category.);

Beneficiaries receiving mechanical ventilation but without tracheotomies, including children
with CPAP or BiPAP administered by face mask; and beneficiaries receiving negative
pressure mechanical ventilation: 8 to 12 hours per day; and

Beneficiaries with severe respiratory disorders who are receiving home oxygen therapy,
continuous pulse oximetry, and who require frequent adjustments of their oxygen therapy and
frequent assessments of their respiratory status: 4 to 12 hours per day.

The actual number of hours authorized requires a clinical judgment which considers both the
categories described above, and the following factors:

Medical fragility including, but not limited to, severity and liability of the condition,
diagnosis, and age;

Skilled nursing needs and the frequency of such needs including, but not limited to,
suctioning of the airway, tracheotomy care, injections, assessment of the beneficiary's
condition, indwelling central venous catheter care, initiation and discontinuation of parenteral
nutrition solutions;

Social and family conditions including, but not limited to, the number of parents and /or
adult care givers in the home, the number of other children in the home, the number of
children in the home with special needs, competency of the parents and care givers, and
support of the family from extended family, friends, and organizations; and

The time a beneficiary is under the care or supervision of another party (e.g., in school or day
care) generally, the number of hours the beneficiary is under the care and supervision of
another party is subtracted (in whole or in part) from the number of hours that would
otherwise have been authorized for the beneficiary.

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Appendix B A Summary of Eligibility Criteria


To be eligible for the CSHCS Hourly Nursing benefit the person must be determined by CSHCS to meet
all of the following criteria:

* Be enrolled in CSHCS;
* Be eligible for Medicaid in the home/community setting (i.e., in the non-institutional setting);
* Be dependent daily on medical equipment or medical technologies to sustain life, and require frequent
skilled nursing care on a daily basis. Both of the following criteria must be met:
The beneficiary is dependent daily on technologically sophisticated or technology-based medical
equipment to sustain life. "Technologically sophisticated" medical equipment includes: 1)
mechanical ventilation four or more hours per day or assisted respiration (BI-PAP or CPAP); and
2) receiving total parenteral nutrition in association with complex medical problems and extreme
medical fragility. "Technology-based" medical equipment includes 1) oral or tracheotomy
suctioning an average of eight or more times in a 24-hour period (i.e., at least every 3 hours); 2)
nasogastric tube feedings or medications when removal and insertion of the nasogastric tube is
required, when associated with complex medical problems or medical fragility; 3) parenteral
nutrition and a central line associated with complex medical problems or medical fragility; 4)
continuous oxygen administration, in association with a pulse oximeter and a documented need
for observations and adjustments in the rate of oxygen administration; and 5) a history of
complex medical problems and medical fragility with a recent history of an unstable course at
home resulting in at least two hospital admissions during the past 6 months.
The beneficiary requires frequent skilled nursing care on a daily basis, during the time when the
licensed nurse is paid to provide services. Frequent means at least once every three hours
throughout a 24-hour period, and/or when delayed interventions may result in further
deterioration of health status, in loss of function or death, in acceleration of the chronic condition,
or in a preventable acute episode. Equipment needs alone do not create the need for skilled
nursing services. Skilled nursing means assessments, judgments, interventions, and evaluations
of interventions requiring the education, training, and experience of a licensed nurse. Skilled
nursing care includes, but is not limited to: performing assessments to determine the basis for
acting or a need for action; monitoring fluid and electrolyte balance; suctioning of the airway;

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injections; indwelling central venous catheter care; oxygen administration and evaluation; and
tracheotomy care.
The beneficiary's need for licensed nursing care is of sufficient severity and/or frequency to
warrant hourly nursing;
Hourly nursing services are appropriate, considering the beneficiary's health and medical care
needs and other services or programs for which he/she is eligible;
Hourly nursing can safely be provided in the home setting;
An Hourly Nursing Service IHCP/Assessment is developed in collaboration with the beneficiary,

the beneficiary's family or guardian, relevant service providers and community agencies. The
HNS IHCP/Assessment identifies and addresses the beneficiary's need for hourly nursing, and is
signed and dated by the beneficiary's attending physician and family; and
The beneficiary is not receiving services under any of the following publicly funded programs

which provide home and community-based service supports: the Children's Waiver,
Habilitation/Support Services Waiver, Specialized Support Services For Persons With
Developmental Disabilities, or the Home and Community Based Waiver for the Elderly and
Disabled (also known as the MIChoice Waiver).

Washington State

Home care activities must cost less than institutionalized care. The recipient:
Must be enrolled in Medicaid;

Must have Medicaid paying for the institutional care no third party insurance can be involved;
Must have the treating MD at the hospital or institution prescribe home care as a necessary need
to even be able to discharge the patient.


Clients must meet all of the following conditions to be considered eligible for private duty nursing
services. A client must:
Be under 21 years of age and eligible for THSteps-CCP,
Meet medical necessity criteria for PDN, and

Have a primary physician who:

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1. establishes a plan of care (POC),
2. provides a statement that PDN services are medically necessary,
3. provides continuing medical care and supervision of the child, including, but not limited
to: examination or treatment within 30 days (for initial requests of PDN services), or
examination or treatment which must either comply with the American Academy of
Pediatrics (AAP) recommended periodicity schedule; or be within 6 months of the PDN
extension start-of-care date, whichever is more frequent (for extensions of PDN services).
(This requirement may be waived based upon review of the child's specific
circumstances.), and
4. provides specific written, dated orders for the child.
5. require care beyond the level of services provided under Texas Medicaid home health
services, skilled nursing visits, and
6. has an identified primary care-giver residing in the child's residence and an identified
alternate care-giver who is or can be trained to provide part of the child's care; or if no
alternate care-giver is identified,
7. have a plan to enable the child to receive care in an alternate setting or situation if the
primary care-giver is unable to fulfill his or her role.

Medical necessity of private duty nursing services is based on consideration of whether a child requires
the following:
Continuous, skillful observation and judgment to maintain or improve health status
Ongoing and frequent skilled interventions to maintain or improve health status, and delayed
skilled intervention is expected to result in at least one of the following:
1. Deterioration of a chronic condition,
2. Loss of function,
3. Imminent risk to health status, and
4. Risk of death.
Technology to sustain life.
Determination of medical necessity is based on submitted documentation, which describes the
following elements:
1. Complexity and intensity of care,
2. Stability and predictability of the child's condition, and
3. Frequency of the child's need for skilled nursing intervention.

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The Bureau of Health Services Financing provides reimbursement for approved home health
services for Medicaid recipients based upon the certification of a licensed physician that the recipient is
homebound and upon the determination of the Medicaid program that the recipient meets the bureau's
homebound criteria under the Medicaid program.

Homebound Criteria for Medicaid Recipients

Homebound status is determined by the recipient's illness and functional limitations. A recipient is
considered to be homebound if the individual:
1) experiences a normal inability to leave home; or
2) is unable to leave home without expending a considerable and taxing effort; and
3) whose absences from the home are infrequent, of short duration, or to receive medical
services which may be unavailable in the home setting, such as ongoing treatment of
outpatient kidney dialysis or outpatient chemotherapy or radiation therapy.
The bureau allows an exception to the third requirement of being unable to leave home for
EPSDT recipients, up to age 21, who attend school. However, the services may only be provided in the
home. These recipients many be considered to meet the homebound criteria while attending school if
prior authorization has approved the individual for multiple daily home visits and/or extended skilled
nursing visits in accordance with the certifying physician's orders which must document and meet the
following criteria:
1) the medical condition of the child meets the medical necessity requirement for the skilled
nursing services in the home and that the provision of these services in the home is the most
appropriate level of medical care;
2) that the failure to receive skilled nursing services in the home would place the recipient at
risk of developing additional medical problems or could cause further debilitation; and
3) that the recipient/student requires skilled nursing services on a regular basis and that these
services cannot be obtained in an outpatient setting before or after normal school hours.
In addition, the following conditions must be met.
1) The recipient/student is determined to be medically fragile. A medically fragile individual is
one who has a medically complex condition characterized by multiple, significant medical
problems, which require extended care. Examples of medically fragile patients are patients
whose care requires most or all of the following services/aides: use of home monitoring

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equipment, IV therapy, ventilator or tracheotomy care, feeding tube and nutritional support,

frequent respiratory care or medication administration, catheter care, frequent positioning

needs, etc.

2) Special accommodations such as specially equipped vehicles or medical devices and/or

personal care attendants are needed to accompany the patient/student to and from school

and/or to assist the patient/student at school.

The responsibilities of the home health agency: The home health agency must provide to the

bureau upon request the supporting documentation used to determine the recipient's homebound


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'Lantos JD, Kohrman AF. Ethical aspects of pediatric home care. Pediatrics. 1992; 89:920-924.

2Clemans CJ, Davis RL, Novack AH, Connell FA. Pediatric home health care in King County,
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3Stein REK. Caring for Children with Chronic Conditions: Issues and Strategies. New York, Springer
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4Gullota TP, Hampton RL, Adams GR, Ryan BA, Weissberg RP. Children's Health Care: Issues for
Year 2000 and Beyond. Thousand Oaks, California: Sage Publications, 1999.

5Gavin NI, Adams EK, Herz EJ. The use of EPSDT and other health care services by children enrolled
in Medicaid: The Impact of OBRA'89. The Milbank Quarterly. 1998;76:207-250.

6Aday LA, Aitken MJ, Wegener DH. Pediatric Home Care: Results ofa National Evaluation of
Programs for Ventilator Assisted Children. Chicago, Illinois: Pluribus Press; 1988.

7Lantos JD, Kohrman AF. Ethical aspects of pediatric home care. Pediatrics. 1992; 89:920-924.

8Kohrman A. Facing the Financing of Care. In: Stein REK (Ed). Caring for Children with Chronic
Conditions: Issues and Strategies. New York, Springer Publishing Company; 1989.

9Provost C, Hughes P. Medicaid: 35 years of service. Health Care Financing Review. 2000; 22:141-174.

'OProvost C, Hughes P. Medicaid: 35 years of service. Health Care Financing Review. 2000; 22:141-

"Kuhlthau K, Perrin JM, Ettner SL, McLaughlin TJ, Gortmaker S. High expenditure children with
supplemental security income. Pediatrics. 1998;102:610-615.

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