report95-0622

              E-mail: hfswebmaster@illinois.gov 6 Internet: http://www.hfs.illlinois.gov
3. Comparative Cost Of Providing Those Services In A Hospital, Skilled Nursing
Facility, Or Intermediate Care Facility.
This HCBS waiver’s cost comparison for fiscal year 2007 was hospitals and SNF/Peds.
As stated previously, the SNF/Ped cost comparison was replaced by nursing facility,
when the waiver was renewed. For purposes of this report, expenditures are based on
fiscal year 2007 data, therefore, SNF/Peds is the cost comparison used. SNF/Peds
admit young people who are medically fragile and require nursing services in addition to
services for their developmental disabilities.
Table 5 displays the estimate of what it would cost the State to serve waiver children in
the absence of home-based or community services. The cost comparisons are split into
two groups: children who would otherwise require hospitalization and those who would
otherwise be served in a SNF/Ped.
Table 5. Per Participant Comparative Costs—Institution versus Community
Waiver Year 2007
Institutional level of
care
Average per participant
cost without HCBS
Average per participant
cost with HCBS
Hospital $ 161,862* $ 105,953*
SNF/PED $ 57,408* $ 84,582*
* Numbers revised March 25, 2008
4. Funding Sources For The Provision Of Services, Including Federal Financial
Participation.
Funding for MF/TD waiver services is appropriated to HFS from the General Revenue
Fund. Through an interagency agreement, DSCC has authority to pay home health and
nursing agency providers for nursing and waiver services out of the HFS appropriation.
Other medical services for children enrolled in the waiver are paid directly by HFS from
its appropriations for hospital, physician, home health, and other services respectively.
Federal financial participation for this program is generally 50 percent of expenditures
for eligible services. In addition, both HFS’ and DSCC’s expenses for administering this
waiver program are eligible for federal match at a rate of 50 percent.
Report of Medicaid Services for
Persons who are Medically Fragile,
Technology Dependent
Presented Pursuant To
Public Act 095-0622
Illinois Department of HealthCare and Family Services
Rod R. Blagojevich, Governor
Barry S. Maram, Director
January 2008
Revision March 2008
TABLE OF CONTENTS
TABLE OF CONTENTS ………………………………………………………………. i
INTRODUCTION ………………………………………………………………………. 1
STATUS OF SERVICES UNDER 5/5-2(7) OF THE PUBLIC AID CODE……………. 2
Table 1. Basic Medicaid Services Provided to MF/TD Waiver Children. 3
Table 2. MF/TD Waiver Services………………………………………… 4
Table 3. MF/TD Basic Medicaid Services Expenditures By Cost
Comparison Group ……………………………………………..… 4
Table 4. MF/TD Basic Medicaid Services Detailed Expenditures……… 5
Table 5. Comparative Costs – Institution to Waiver.…..………………… 6
STATUS OF PILOT PROGRAM FOR PERSONS WHO ARE MEDICALLY FRAGILE
TECHNOLOGY DEPENDENT (305 ILCS 5/12-4.36)………………………………… 10
Chart 1. Hours approved before and after transition....................…… 14
Chart 2. Average monthly change in hours post transition…………… 14
Chart 3. Daily hours approved before and after transition.........……... 15
GLOSSARY …………………………………………………………………………... 19
INDEX OF WEB LINKS………………………………………….………………….… 20
Appendix I Recent Legislative Activity…………………………………………….. 21
Appendix II Background on HCBS waivers, Illinois programs and services…... 22
i
Report of Medicaid Services for Persons who are
Medically Fragile, Technology Dependent
Public Act 95-0622
December 2007
INTRODUCTION
This report is being submitted to satisfy the requirements of PA 95-0622 related to services
for children and young adults with disabilities and are medically fragile, technology
dependent.
The history of recent legislative activity on this subject is summarized in Appendix I.
Appendix II provides background information on federal requirements regarding home and
community-based (HCBS) service waivers and programs and services offered in Illinois.
Public Act 95-0622
In 2007, Public Act 95-0622, was enacted and, in general, does three things:
1. Created reporting requirements under the Department of Human Services Act
(20 ILCS 1305/10/55 new) for the Department of Human Services (DHS) to
report on the extent to which children with developmental disabilities, mental
illness, severe emotional disorders, or more than one of these disabilities who
are currently served in institutions could be served in the community or home-based
setting for the same or lower cost. Reports are required bi-annually on
even years with the first report due on or before March 1, 2008 and will be
submitted separately from this report.
2. Amended the Illinois Public Aid Code (305 ILCS 5/5-2.05) requiring the
Department of Healthcare and Family Services (HFS) to report on existing
services offered under paragraph 7 of Section 5-2. This paragraph describes
services provided to medically fragile, technology dependent children under the
age of 21 receiving home and community-based waiver services. This report is
required bi-annually on even numbered years with the first report due January 1,
2008. Response to this requirement is under the following section: Status of
Services Under 5/5-2/7 of the Public Aid Code.
3. Amended the Illinois Public Aid Code (305 ILCS 5/12-4.36) extending the
assessment pilot established in Public Act 94-0838 from three to four years; with
an annual report requirement in January of each year starting in 2008.
Response to this requirement is under the following section: Status of Pilot
Program for Persons Who are Medically Fragile and Technology Dependent.
1
The Act allows the reports under number two and three above to be combined. This
report includes information as follows: the number of individuals and types of
services provided in the MF/TD children’s waiver and the comparable institutional
setting; funding sources; caregiver qualifications and the number of young people
who have aged out of the MF/TD waiver over the last two years; specific data on the
implementation of a pilot program for this population; and summary information on
interviews conducted with young adults who transitioned from the MF/TD waiver to
the persons with disabilities waiver.
Information related to any active litigation with DHS and HFS has been excluded
from this report.
STATUS OF SERVICES UNDER 5/5-2(7) OF THE PUBLIC AID CODE
Illinois’ HCBS Waiver for Medically Fragile, Technology Dependent Children
At 305 ILCS 5/5-2(7), the Illinois Public Aid Code authorizes an HCBS waiver program
for children. The MF/TD waiver program is the only Illinois waiver that operates under
this provision. The law specifically provides that medical assistance shall be available
to persons who are under 21 years of age and would qualify as disabled as defined
under the federal Supplemental Security Income Program, provided medical service for
such persons would be eligible for federal financial participation, and provided the
Illinois Department determines that:
a) The person requires a level of care provided by a hospital, skilled nursing facility,
or intermediate care facility, as determined by a physician licensed to practice
medicine in all its branches;
b) It is appropriate to provide such care outside of an institution, as determined by a
physician licensed to practice medicine in all its branches;
c) The estimated amount, which would be expended for care outside the institution,
is not greater than the estimated amount, which would be expended in an
institution.
In compliance with Public Act 095-0622, this report includes the following information
concerning the MF/TD waiver program:
1. The number of persons who currently receive these services.
2. The nature, scope and cost of services.
3. The comparative cost of providing those services in a hospital, skilled nursing
facility, or intermediate care facility.
4. The funding source for the provision of services, including federal financial
participation.
5. The qualifications, skills, and availability of caregivers for children receiving
services.
2
6. The number of children who have aged out of the services offered under
paragraph 7 of the section 5-2 during the two years preceding the report.
State fiscal year 2007 data have been used, except where otherwise stated.
Additionally, skilled nursing facility for persons under 21 years of age (SNF/Ped) is
being used as the cost comparison population, rather than nursing facility. The change
from SNF/Ped to nursing facility occurred with the renewal effective September 1, 2007,
therefore was not yet in effect during fiscal year 2007.
1. Number Of Persons Who Currently Receive Waiver Services.
As of September 1, 2007, 457 children received services in the MF/TD HCBS waiver.
This number is lower than the 614 referenced in the following charts, because it is
based on a point in time. The 614 figure is based on the total number of children served
in the waiver from July 1, 2006 through June 30, 2007.
2. Nature, Scope, And Cost Of Waiver Services.
As stated previously, waiver services are services not otherwise covered under the
Medicaid program for children. Under federal law, all medically necessary services
described in Section 1905(a) of the Social Security Act must be provided to children.
This includes a wide range of preventive and therapeutic services.
Nursing services, hospital care, durable medical equipment and supplies, are services
most frequently used by children in the MF/TD waiver. These services are regular
Medicaid services and do not require a waiver. They are shown in Table 1.
Table 1. Basic Medicaid Services Provided to MF/TD Waiver Children
State Fiscal Year 2007
Total Children: 614
Basic Medicaid service Participants Total expenditures
Average
expenditure per
participant
Nursing 608 $58,518,023.75 $96,246.75
Inpatient hospital 262 $23,958,663.33 $91,445.28
Medical equipment 434 $ 3,115,327.90 $ 7,178.17
Medical supplies 521 $ 3,194,658.40 $ 6,131.78
3
Services available only under the waiver include respite care, environmental
modifications, special equipment and a few other services unique to this waiver
population. Of notable interest, waiver service costs are significantly less than Medicaid
covered non-waiver service costs. Table 2 shows the utilization of waiver services in
FY 2007.
Table 2. MF/TD Waiver Services
State Fiscal Year 2007
Total Children: 614
Basic Medicaid service Participants
Total
expenditures
Average
expenditure per
participant
Respite 405 $1,780,666.00 $4,396.71
Environmental modification 151 $ 210,331.00 $1,392.92
Special equipment* 53 $ 190,500.00 $3,594.34
Nurse training 2 $ 1,664.00 $ 832.00
Placement counseling 0 $ 0.00 $ 0.00
Family training 0 $ 0.00 $ 0.00
Medically-supervised day care 0 $ 0.00 $ 0.00
* In general, Medicaid covers medical equipment and supplies. This service is included in the waiver for situations
where children may need special equipment not otherwise covered.
Children enrolled under the MF/TD waiver also receive other covered Medicaid
services. In Table 3, non-waiver (basic Medicaid) costs of children who would be
hospitalized if not for receipt of waiver services are displayed separately from non-waiver
costs of children who would otherwise qualify for SNF-Ped services. Table 3
includes breakdowns of unique users, total costs, and the average cost per child of:
- Hospital compared non-waiver services
- SNF/Ped compared non-waiver services
Table 3. MFTD Basic Medicaid Services Expenditures By Cost Comparison
Group
State Fiscal Year 2007
Total Children: 614
Cost comparison Participants
Total
expenditures
Average
expenditure per
participant
Hospital* 583 $46,831,226.00 $80,328.00
SNF/Ped 31 $ 2,029,968.00 $65,482.84
*Three hospital-compared recipients were enrolled in the MFTD Waiver but received no Medicaid services this year.
4
Table 4 details the four largest categories of non-waiver (basic Medicaid) services and
all other expenditures by cost and percent of total costs for children enrolled in the
MF/TD waiver.
Table 4. MF/TD Basic Medicaid Services Detailed Expenditures
State Fiscal Year 2007
Total Children: 614
58.8% Private Duty
Nursing/Other
Nursing
23.9% Inpatient Hospital
Services
3.1%
Medical
Equipment
3.2% Medical Supplies
11.0% Other
Service Breakdown Total Cost Percent%
Nursing Services $ 58,838,279.97 58.8%
Inpatient Hospital Services $ 23,958,663.33 23.9%
Medical Equipment/Prosthetic Devices $ 3,115,327.90 3.1%
Medical Supplies $ 3,194,658.40 3.2%
All Other Total* $ 11,004,725.32 11.0%
Total Expenditures $100,111,654.92 100.0%
*(Breakdown of All Other)
Physician Services $ 1,671,535.47 1.7%
Therapies (Physical, occupational & speech;
includes EI therapies) $ 1,154,591.32 1.2%
Outpatient Services $ 423,546.02 0.4%
Prescription Drugs $ 4,895,554.44 4.9%
Early Intervention Services (Excludes therapies) $ 176,672.33 0.2%
All Other Medical Services (Lab, x-ray, optical,
dental, audiology, podiatry, health kids services,
mental health, transportation, & others) $ 2,682,825.74 2.7%
Note: School Health Services total expenditures include medical services in
the Individual Education Plan (IEP). The School Health Services
expenditures are included in the nursing, therapies and all other medical
service categories.
$ 1,060,302.73
5
3. Comparative Cost Of Providing Those Services In A Hospital, Skilled Nursing
Facility, Or Intermediate Care Facility.
This HCBS waiver’s cost comparison for fiscal year 2007 was hospitals and SNF/Peds.
As stated previously, the SNF/Ped cost comparison was replaced by nursing facility,
when the waiver was renewed. For purposes of this report, expenditures are based on
fiscal year 2007 data, therefore, SNF/Peds is the cost comparison used. SNF/Peds
admit young people who are medically fragile and require nursing services in addition to
services for their developmental disabilities.
Table 5 displays the estimate of what it would cost the State to serve waiver children in
the absence of home-based or community services. The cost comparisons are split into
two groups: children who would otherwise require hospitalization and those who would
otherwise be served in a SNF/Ped.
Table 5. Per Participant Comparative Costs—Institution versus Community
Waiver Year 2007
Institutional level of
care
Average per participant
cost without HCBS
Average per participant
cost with HCBS
Hospital $ 161,862* $ 105,953*
SNF/PED $ 57,408* $ 84,582*
* Numbers revised March 25, 2008
4. Funding Sources For The Provision Of Services, Including Federal Financial
Participation.
Funding for MF/TD waiver services is appropriated to HFS from the General Revenue
Fund. Through an interagency agreement, DSCC has authority to pay home health and
nursing agency providers for nursing and waiver services out of the HFS appropriation.
Other medical services for children enrolled in the waiver are paid directly by HFS from
its appropriations for hospital, physician, home health, and other services respectively.
Federal financial participation for this program is generally 50 percent of expenditures
for eligible services. In addition, both HFS’ and DSCC’s expenses for administering this
waiver program are eligible for federal match at a rate of 50 percent.
6
5. Qualifications, Skills And Availability Of Caregivers For Children Receiving
Services.
Home Health Agencies
Illinois has an enrollment of 314 home health agencies, but only a specialized group of
nursing agencies serves the technology-dependent pediatric population with shift
nursing care. There are 52 providers (51 home health agencies or private duty nursing
agencies and one children’s community-based health center) enrolled with HFS and
approved by DSCC to provide nursing services in the MF/TD HCBS waiver program.
DSCC has specific guidelines for approving providers of private duty nursing services
and the children’s community-based health center under the waiver. Once approved,
and annually thereafter, agencies sign an agreement with DSCC to comply with the
requirements of the program. These include qualifications, experience and training for
administrative and nursing staff.
Appropriately qualified staff—registered nurses (RNs), licensed practical nurses (LPNs)
and certified nurse aides (CNAs), who are licensed or certified in Illinois, provide respite
care services for children in the MF/TD HCBS waiver. The same qualifications apply to
private duty nursing services. Nurses and CNAs must be employed by a licensed home
health agency or an approved private duty nursing agency, except those providing
services in the children’s community-based health center who are employed directly by
the health center.
Illinois is not immune to the impact of the national shortage of nurses and other health
care workers on the availability of caregivers. Agencies providing home-based services
must constantly compete with recruitment strategies and wages offered by institutions.
In April and May of 2007, DSCC held forums across the state with nursing agencies to
discuss quality issues including assuring staff qualifications, training, promoting quality
communications and reporting requirements, and promoting parent training. This also
allowed an opportunity for DSCC to discuss the challenges agencies have in providing
home care to MF/TD children and explore why CNAs were not utilized more since most
agencies report an ongoing struggle with recruiting and retaining nurses. The forums
were held in Chicago, Peoria, O’Fallon, and Rockford. Of the 57 nursing agencies
invited, 39 or 68% of the agencies attended. Four of the 18 agencies that did not attend
were not providing services to waiver clients.
Nursing agencies shared the following challenges with rates and staffing:
• Insurance coverage for shift nursing has decreased. Some clients have insurance
coverage for home nursing “only until the waiver can be approved.” It is difficult for
the agencies to continue to staff these cases because reimbursement rates drop
from $40-$75/hour under insurance to waiver rates of $25-29/hour and up to $32-
$36/ hour in Cook and the collar counties; and traveling costs and differentials for
weekends and holidays are not available under the waiver.
7
• They were able to staff from 70 to 100%, with the majority staffing greater than 90%
of the prescribed nursing hours. The agencies provide a mix of RNs and LPNs. All
of the nursing agencies attempt to hire RNs/LPNs who can meet the child’s nursing
needs and are willing to work at the times requested by the parent.
Barriers reported by nursing agencies that impact the ability to staff cases included:
• Parents failing to relieve the nurse on time;
• Home environment issues such as severe clutter, roaches and rodents;
• Lack of available parking;
• Too many people in the home;
• Inadequate temperature controls, either too hot or too cold in the house/child’s
room;
• Inadequate space for the client;
• Social issues such as conflict with parents or sibling issues;
• Complexity of care;
• Inadequate reimbursement rates;
• Rising costs of offering benefits to the nurses including workmen’s compensation;
and
• Competition among the nursing agencies and other medical institutions.
Nursing agencies described the following barriers in utilizing CNAs:
• RN supervisory visits are required every 14 days. When cases are not otherwise
staffed by RNs, supervisors must conduct these visits, which is not cost effective.
• Insurance companies pay $28 per hour for CNAs, but the Medicaid rate is $13.75.
• When CNAs are utilized a trained caregiver must be in the home creating
scheduling conflicts and less flexibility for the parents and temptation for parents to
request the CNA to do more than they are allowed or trained to do.
• CNAs are trained emphasizing care needs of the elderly and the intense medical
needs and family dynamics involved in pediatric home care are a challenge.
• The medical needs and fragility of some of the children may be too complex for a
CNA.
• Workers compensation liability costs would increase. It is already difficult to find
carriers who will cover pediatrics using RNs and LPNs. Adding CNAs to the mix
may increase the challenge.
Other variables that impact staffing patterns include:
• Hours of care are approved by the week. Families have flexibility in how they use
the hours and parents may cancel services.
• Other sources such as schools, insurance, or other programs cover some of the
weekly hours.
• Many of the children have frequent hospitalizations.
8
Medically Supervised Day Care
There is no medically supervised day care provider currently certified in Illinois.
However, Public Act 93-0402 does amend the Alternative Health Care Delivery Act to
include medical day care as a service that may be provided in a children’s community-based
health center licensed under that act by the Department of Public Health. DCFS
certifies medical day care.
Environmental Modifications and Specialized Medical Equipment and Supplies
Providers of other waiver services, such as environmental modifications, specialized
medical equipment and supplies, and placement maintenance counseling, are subject
to applicable licensure requirements or qualifications and appropriate experience.
Environmental modifications and specialized medical equipment and supplies must be
prior approved by HFS. DSCC approves home medical equipment and infusion
providers serving children approved for waiver services and requires annual signed
agreements. The Department of Financial and Professional Regulation must also
license home medical equipment providers. There are 1,384 home medical equipment
providers enrolled in the Medical Assistance Program. Of that number 73 meet the
additional DSCC requirements for serving waiver children.
Placement Maintenance Counseling
Placement maintenance counseling is provided by a licensed social worker, licensed
clinical psychologist, or an agency certified by DHS Division of Mental Health (DMH) or
DCFS to provide clinical or rehabilitation services. To receive payment for covered
services, all medical providers must be enrolled with HFS.
6. Number of Children who Aged Out of Services Offered under Paragraph 7 of
the Section 5-2 During the Two Years Preceding the Report.
For the period of July 1, 2004 through August 31, 2007, 41 individuals aged out of the
waiver.
9
Status of Pilot Program for Persons Who are Medically Fragile and Technology
Dependent (305 ILCS 5/12-4.36).
Under Public Act 94-0838, DHS-DRS was to conduct a pilot program, subject to annual
appropriations, that addresses individuals with medically fragile technology dependent
needs aging out of the children’s waiver to the persons with disabilities waiver that
imposes a lower institutional cost comparison.
The act required that DHS work in cooperation with HFS to adopt rules to initiate a
three-year pilot to test a standardized assessment tool and provide appropriate HCBS
medical services for persons who received services under the MF/TD children’s waiver
but are no longer eligible because of age. The act stated that DHS must make an
annual report to the Governor and General Assembly starting in January 1, 2008. As a
result of Public 95-0622, this report can now be combined with the MF/TD services
report on even years, beginning in 2008. During odd years, this report will stand-alone.
The report must include:
1. Number evaluated with the assessment tool
2. Number who receive additional services
3. Number whose services are reduced
4. Nature, scope and cost of services provided
5. Comparative cost to institutions
6. Progress in establishing an objective, standardized assessment tool
7. Recommendations for funding needed to expand the pilot to all MF/TD
individuals in HCBS waivers
8. Subject to appropriation or the availability of other funds for this purpose,
participant experience survey information for persons with disabilities who are
participating in the pilot program and for persons with disabilities who are not
participating in the pilot program but who are currently receiving services under
the home and community-based services waiver and who have received services
under paragraph 7 of the Section 5-2 of the Illinois Public Aid Code.
For this report, HFS will address numbers 6 and 8, above. The past year has been
dedicated to the development and pilot testing of the objective standardized
assessment tool. Additionally, HFS was able to conduct personal experience surveys
on individuals who have aged out of the MF/TD waiver since July 2004, and are now
receiving services in the persons with disabilities waiver. The remaining report
elements will be addressed in the 2009 report.
10
6. Progress in Establishing an Objective, Standardized Assessment Tool
In fiscal year 2007, HFS entered into a three-year contract with a quality improvement
organization, HealthSystems of Illinois, to assist HFS in meeting federal waiver
requirements regarding the administrative oversight of the waiver and assuring the
health, safety and welfare of waiver participants.
Under the contract, the vendor is also responsible for conducting a special project for
the MF/TD waiver to develop an objective level of care instrument to determine eligibility
and a comprehensive needs assessment to assist in identifying resource needs. The
vendor took a multi-step approach to developing and implementing the level of care and
assessment instruments.
After studying many states and reviewing tools with HFS, DHS, and DSCC program
staff, draft level of care and assessment instruments were developed. The level of care
is a hybrid instrument created from tools used by the states of Oregon and Virginia with
additional items specific to Illinois. The level of care reviews technology needs and
nursing fragility by assigning points. The minimum score required for initial and
continued medical eligibility is 50, however, if the assessment does not identify unmet
needs that would result in a risk for institutional care, the individual may not be
approved for the waiver. The assessment instrument collects medical, social,
restorative and habilitation needs, other sources of support, strengths and identifies
unmet needs that will be used to develop a comprehensive, person centered plan of
care. In addition there are components for pain, substance abuse, behaviors,
depression and caregiver stress.
The level of care and assessment instruments have been continuously revised
throughout each step of the process. HFS, DSCC and DRS have all played key roles in
their development. Pilot training for DSCC care coordinators occurred on July 23 and
24, 2007. Five of the 13 DSCC regions participated in the pilot: Rockford, Peoria,
North Chicago, DuPage and Southern Cook. The pilot started the last week of July and
continued through mid-September. As part of the pilot, the DSCC care coordinators
utilized both the new and old methods of gathering waiver eligibility information, so that
staff could compare the processes. DSCC and HFS reviewed the data collected from
the level of care and assessment instruments and gathered feedback from the pilot’s
participants (DSCC care coordinators and HFS medical consultants). After this
information was analyzed, additional changes were made to the instruments to
streamline and simplify. Another round of piloting was then conducted beginning in
November 2007, utilizing two additional regions. This pilot will continue through March
of 2008, with statewide rollout planned on or before July 1, 2008.
Thus far, testing has shown that individuals with a ventilator or tracheotomy would most
likely be eligible for the waiver, however those with only a g-tube and no other nursing
needs may not be eligible. HFS staff are discussing how to continue meeting service
needs when children do not meet the waiver eligibility criteria.
11
8. Participant Experience Surveys
HFS developed an interview tool to gather participant experiences on individuals that
had previously received services under the MF/TD HCBS Waiver (Illinois Public Aid
Code Section 5-2, paragraph 7) and who had transitioned to HCBS waiver services
through the DHS-DRS Home Services Programs. Since July 1, 2004, 32 individuals
had transitioned to this program. HFS attempted to contact all 32 and 25 or 78%
participated in telephone interviews in October and November of 2007.
The interview tool was designed to identify what services the individuals are now
receiving, including paid and non-paid and from other sources; what the transition was
like; how the program is now working; and whether they have any unmet needs.
Individuals or family members were requested to rate their overall satisfaction with
services and screened for caregiver stress. Lastly, for those that voiced difficulties as a
caregiver, they were offered the opportunity to complete a caregiver questionnaire.
The following information outlines some demographic information on the individuals
interviewed:
Length of time on the DRS waiver (persons with disabilities)
Less than
1 year
One-Two
Years
Two-Three
Years
Three-Four
Years
6 8 9 2
Where they live
Metro/
Collar Counties
Other
Counties
18 7
Technology needs
*Vent/
**Trach
**Trach
only
***BiPap/
CPAP only
Neither Vent
or Trach
15 6 2 2
* A ventilator is an automatic machine designed to mechanically move breathable air into and out of the lungs, to
provide respiration for a patient who is physically unable to breathe, or breathing insufficiently. ** A tracheostomy is
an opening in the trachea for the insertion of a tube to facilitate breathing. ***BiPAP stands for Bi-level Positive
Airway Pressure. It is a breathing apparatus that helps people get more air into their lungs. C-PAP, stands for
Continuous Positive Airway Pressure. With the BiPAP, air is delivered through a mask and can be set at one
pressure for inhaling and another for exhaling, which is easier for persons with neuromuscular disease to use in that it
more air can move in and out of the lungs without the natural muscular effort.
12
Service maximum (cost comparison allowance)
Most individuals are receiving the Exceptional Care (EC) Rate ranging from $4741 to
$9112 per month in service cost allowance. The EC rates are based on nursing facility
exceptional care rates, which were established for medically fragile populations;
including: head trauma/spinal cord injury, AIDS, multiple complex medical needs,
complex respiratory care, or ventilator dependency.
# EC Rate # Non EC Rate
22 3
Availability of natural supports
Sixty percent of the 25 individuals interviewed have two or more caregivers as support.
No strong correlation was apparent regarding satisfaction and number of caregivers.
However, three of the 10 single caregivers indicated a need for additional hours and two
indicated a need for more support from the DRS case manager. This compared to a
total of six of 15 or 40% with more than two caregivers who had similar requests.
One Family Caregiver Two or More
Family Caregivers
10 15
Hours Approved
In order to analyze the differences in the numbers of hours of care approved before and
after transition, the number of hours approved the year prior to the transition under the
MFTD waiver was compared to the number of hours approved in the first year after
transition to the persons with disabilities waiver. Eleven of the 25 or 44% of the
individuals were receiving more total hours with an average increase of 1,495 hours per
year or 125 hours per month. Fourteen or 56% of the individuals were receiving fewer
total hours with an overall average decrease of 1,349 hours per year or 112 hours per
month. Overall, the average monthly change in hours for an individual post transition
was eleven less hours per month.
Charts 1 through 3 reflect hours approved pre and post transition. Chart 1 reflects the
comparison of hours before and after transition on a yearly basis and Chart 2 shows the
average increases and decreases on a monthly basis post transition. The charts have
been reordered randomly from the original sample to protect confidentiality.
13
Chart 1
Annual Hours Before and After Transition
0
1000
2000
3000
4000
5000
6000
7000
8000
9000
10000
A B C D E F G H I J K L M N O P Q R S T U V W X Y
Hours
DSCC: Hours/Year DRS: Hours/Year
Chart 2
Average Monthly Changes in Hours Post Transition
-11
-112
125
-150
-100
-50
0
50
100
150
Overall average monthly change
in hours for an individual
Average decrease per month for
14 individuals
Average increase per month for
11 individuals
Hours
Licensed nurses provide nearly 100% of the nursing care in the MF/TD waiver.
Analysis of the nursing hours for those post transition revealed 55% of the hours staffed
by licensed nurses and 45% by non-licensed providers in the persons with disabilities
waiver. Subsequently, the increases in the number of hours post transition were
created from the shift of all licensed care to mixes of licensed and unlicensed care.
Post transition, two of the individuals had all unlicensed care and three of the individuals
had all licensed care.
14
Chart 3 shows the comparison of daily hours pre and post transition based on approved
hours in the approved plans of care and the mean (average), median (middle of the set)
and mode (most frequent number) of the hours approved under each program.
Chart 3
Daily hours approved before and after transition
0
2
4
6
8
10
12
14
16
18
20
22
24
A B C D E F G H I J K L M N O P Q R S T U V W X Y
DSCC: Hours/Day DRS: Hours/Day
DSCC
Median - 14
Mean - 13
Mode - 16
DRS
Median - 12
Mean - 13
Mode - 16
Transition Experience
HFS asked the clients or their family caregivers to comment about the assistance they
received during the transition between the waiver programs, and on their current
program and services. They were asked to rate their satisfaction level as: very
satisfied; satisfied; mostly satisfied; somewhat dissatisfied or very dissatisfied.
Transition experience with DSCC care coordination
All those interviewed indicated they were mostly to very satisfied with the DSCC Care
Coordination services during the transition.
Very
Satisfied Satisfied Mostly
Satisfied
Somewhat
Dissatisfied
Very
Dissatisfied
13 9 3 0 0
Transition experience with DRS case management
Twenty-three of the 25 or 92% interviewed were mostly to very satisfied with the DRS
case managers, but several complained of lack of support and understanding of the
unique needs of the medically fragile person.
Very
Satisfied Satisfied Mostly
Satisfied
Somewhat
Dissatisfied
Very
Dissatisfied
5 12 6 1 1
15
Satisfaction with hours of care in current program
Twenty of 25 or 80% indicated they were satisfied with the hours of care, even though
some had indicated a desire for additional hours. Most said that the biggest adjustment
was the reduction in hours and having to find their own staff.
Very
Satisfied Satisfied Mostly
Satisfied
Somewhat
Dissatisfied
Very
Dissatisfied
0 15 5 4 1
Satisfaction with quality of current paid services
Twenty-two of 25 or 88% interviewed were mostly to very satisfied with the quality of
their current services. Six individuals report family members are paid caregivers under
the current DRS program. Seven families maintained one or more nurses from the
MF/TD waiver through the transition.
Very
Satisfied Satisfied Mostly
Satisfied
Somewhat
Dissatisfied
Very
Dissatisfied
6 8 8 2 1
Some of the comments offered by individuals or caregivers:
_13__ Families expressed the need for a cushion of more hours or extra hours for
special needs such as an acute illness.
__7__ Described the challenges of training and arranging the care (e.g. locating and
hiring staff), which was previously managed mostly by DSCC.
__4__ Indicated a need for additional hours for respite or breaks from care giving.
__4__ Suggested the lower wages are a barrier to hiring quality staff.
__2__ Expressed concerns about the ability of unlicensed staff to provide the
medically complex care
__2__ Expressed the difficulties with care when staff did not show.
__2__ Expressed the additional burden of case management duties, such as
ordering supplies and other paperwork.
Reported unmet needs
Medical or health
No unmet medical or physical needs were reported. One caregiver indicated a problem
if staff called off as two persons were needed to reposition the individual.
Community integration and education
Five individuals expressed a desire for education or day program, which are not met.
The reasons given were:
• Looked at vocational rehab but too difficult to transfer client
• Cannot afford to pay for nursing at the day program and day program does not
provide it.
• Due to lack of transportation, could not always attend therapy and exercise
classes.
16
• Vocational Rehab did not offer assistance and even discouraged the client's
goals to attend college.
• Loss of therapies, transportation and education offered previously through the
schools.
• Would like to continue job training or college.
• Home schooling no longer available since transition.
• No schooling available for persons over age 21 in local area.
Other reported concerns:
__5__ Families had specific requests for equipment upgrades, assistive devices or
additional supplies, which were difficult to obtain or had not been approved
through HFS or DRS.
__3__ Families report that Medicaid would not reimburse for prescribed medications.
Report of caregiver stress
Part of the interview included an opportunity for the caregiver to describe how difficult
care giving was by rating their responses as either: not difficult, somewhat difficult or
very difficult. Only one person reported that care giving duties were somewhat to very
difficult, however this individual attributed this response to other recent personal events
not directly related to care giving. One consumer was interviewed, therefore
referenced below as not applicable.
Not Difficult Somewhat
Difficult
Somewhat Difficult/
Very Difficult N/A
8 15 1 1
Approximately one third of the caregivers interviewed indicated that care giving was not
difficult and two thirds indicated that it was somewhat difficult. Those who answered
that care giving was not difficult qualified their answer with comments such as: things
are working fine, but we need more hours; transition was very good and now it is easier
to staff needed hours because they are not all nursing hours; family members are
providing paid care; and hours are about the same as before. The majority expressed
that care giving duties were somewhat difficult, most citing need for more hours or extra
hours; respite or breaks; difficulties staffing hours because of the nursing shortage; and
assistance with the case management duties such as finding nurses, ordering supplies
and doing paperwork.
In addition, caregivers were given the opportunity to describe the barriers to continued
care giving. A questionnaire listing approximately 20 common factors that impact care
giving was used to identify challenges to families. Of the eight individuals that shared
comments, each of the following were cited two or three times: physical and emotional
stress; disabilities or illnesses making care giving difficult; other care giving
responsibilities; fear that unlicensed staff cannot handle medical complexities creating a
fear to leave alone; need for more breaks, insufficient resources to maintain utilities, and
financial problems. No one indicated that they did not have the necessary training or
skills to care for the young adults.
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Next Steps
HFS is working with DHS-DRS to address the individual concerns shared by the
families in these interviews. HFS has selected eleven individuals in the sample to pilot
the level of care and assessment instruments described above. The information from
the pilot will be used to further analyze how individual care needs should drive the
resource allocations and assist in analyzing the potential costs.
In the interim HFS will offer a contact person to work directly with transition consumers
and families who need assistance in pharmacy, medical equipment and supply or other
medical billing needs. HFS will also have further discussions with DHS-DRS to
examine how case management can be enhanced to improve supports to the
individuals transitioning from the MF/TD waiver to the persons with disabilities waiver.
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GLOSSARY
CMS Centers for Medicare and Medicaid Services
CNA Certified nurse aide
DCFS Department of Children and Family Services
DD Developmental disability
DHHS Department of Health and Human Services
DHS Department of Human Services
DMH Division of Mental Health
DoN Determination of need
DRS Division of Rehabilitation Services, within DHS
DSCC Division of Specialized Care for Children
FY Fiscal year
HCBS Home and community-based services
HFS Department of Healthcare and Family Services
HIV/AIDS Human immunodeficiency virus/acquired immune deficiency syndrome
ICF/MR Intermediate care facilities for persons with mental retardation
ILCS Illinois Compiled Statutes
LPN Licensed Practical Nurse
MF/TD Medically fragile, technology dependent
MMIS Medicaid Management Information System
RN Registered Nurse
SLP Supportive Living Program
SNF/Ped Skilled nursing facility for under 22 years of age
UIC University of Illinois at Chicago
WY Waiver year
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INDEX OF WEB LINKS
The following provides a list of links referenced in the report:
Public Act 93-0599
http://www.ilga.gov/legislation/publicacts/fulltext.asp?name=095-0622
“Services for Mentally Disabled Children Presented Pursuant To Public Act 93-0599”
submitted in December 2003
http://www.hfs.illinois.gov/assets/122603sed_studyreport.pdf
Public Act 94-0838
http://www.ilga.gov/legislation/publicacts/fulltext.asp?name=094-0838
Public Act 95-0622
http://www.ilga.gov/legislation/publicacts/fulltext.asp?name=095-0622
Section 1915(c) of the Social Security Act
http://www.ssa.gov/OP_Home/ssact/title19/1915.htm
Sections 1905(a) and 1905(r) of the Social Security Act
http://www.ssa.gov/OP_Home/ssact/title19/1905.htm
HFS’ handbook for EPSDT – “Handbook for Providers of Healthy Kids Services”
http://www.hfs.illinois.gov/assets/041404hk200.pdf
Appendices for EPSDT handbook
http://www.hfs.illinois.gov/assets/072202hk200appendices.pdf
Illinois HCBS waivers homepage including links to each operating agency
http://www.hfs.illinois.gov/hcbswaivers/
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Appendix I
Recent Legislation
Public Act 93-0599
In 2003, Public Act 93-0599 amended the Illinois Public Aid Code to add a new section,
305 ILCS 5/5-2.05. The law gave the Department of Healthcare and Family Services
(HFS) the authority to offer home & community-based services (HCBS) instead of
institutional placement to severely mentally ill or emotionally disturbed children who
would otherwise not qualify for medical assistance because their families have too much
income. The law also required that HFS, in conjunction with the Department of Human
Services (DHS) and the Division of Specialized Care for Children (DSCC), University of
Illinois at Chicago, report to the Governor and General Assembly regarding the status of
services provided under 305 ILCS 5/5-2(7), by January 1, 2004.
This report, entitled, “Services for Mentally Disabled Children Presented Pursuant To
Public Act 93-0599,” was submitted in December 2003.
Public Act 94-0838
In 2006, Public Act 94-0838, the FY07 Budget Implementation (Human Services) Act,
established a three-year pilot program for persons who are medically fragile and
technology dependent (MF/TD). The pilot was to begin in July 2006 and end in June
2009. The purpose is to test a standardized assessment tool for the MF/TD population
and provide appropriate services to young adults who have aged-out of the MF/TD
waiver. An annual progress report to the Governor and General Assembly is required,
beginning in January 2008, with the last report due in January 2010. This Act has been
superceded by the reporting requirements of Public Act 95-9622.
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Appendix II
BACKGROUND
Medicaid Home & Community-Based Services Waivers
Medicaid is the federal program authorized under Title XIX of the Social Security Act to
reimburse states for providing health benefits to low-income persons. The federal law
sets out requirements and limitations that states must follow in operating their programs.
Medical assistance provided in Illinois under the Public Aid Code generally qualifies for
reimbursement by the federal government under Title XIX at a rate of 50 percent.
Title XIX limits the kinds of services that states may provide. Generally speaking,
eligible services must be of a medical or rehabilitative nature. Certain services needed
to allow a child with disabilities to remain at home, for example, environmental
modification, habilitation services, and respite care, are restricted by Title XIX.
The Secretary of (the U.S. Department of) Health and Human Services (DHHS) is
authorized to waive certain Title XIX requirements to enable states to receive
reimbursement for home and community-based services. Such waivers are generally
granted under the authority of Section 1915(c) of the Social Security Act and are
referred to as HCBS waivers. Illinois has been granted a total of nine HCBS waivers.
HCBS waivers permit states to provide home and community-based services other than
room and board to individuals who would otherwise require an institutional level of care.
Essentially, these waivers allow states to cover a wide range of additional services as
long as the services are required to keep a person from being institutionalized.
A state may receive federal Medicaid funds only for persons who are eligible for
Medicaid. Such persons must meet Medicaid’s financial eligibility requirements (income
and assets) and non-financial eligibility factors (fit into an eligible group: children,
parents, seniors, persons with disabilities; live in Illinois; be a U.S. citizen or a qualified
legal alien, for example). Under HCBS waivers, however, states may choose not to
count parents’ income and assets when determining whether a child is eligible. Anyone
who qualifies for a waiver is also eligible for all other Medicaid services provided by the
state. Here in Illinois, the state has chosen to exempt parental income in the HCBS
waivers that are targeted toward children only. These include the MF/TD children’s
waiver and two new HCBS waivers for children with developmental disabilities that were
implemented July 1, 2007.
The HCBS waivers also allow states flexibility in developing alternatives to placing
Medicaid-eligible individuals in hospitals, nursing facilities, or intermediate care facilities
for persons with mental retardation (ICFs/MR). HCBS waivers allow states flexibility to
select a mix of services that best serves the population of individuals covered. HCBS
waivers may be limited to persons having a particular disability or who are of a certain
age. The waiver program does not have to operate statewide. The number of
participants in an HCBS waiver program may be capped, although once a participant is
22
enrolled, the participant is entitled to all medically necessary services made available to
any other participant under that waiver. An individual may participate in only one waiver
at a time.
The state must assure the federal Centers for Medicare and Medicaid Services (CMS)
that the cost of providing home or community-based services will not exceed the cost of
care for an identical population in an institution. In addition, the state must document
that safeguards are in place to protect the health, safety, and welfare of those served.
HCBS waivers are initially approved for a three-year period. They may subsequently be
renewed for five-year periods as long as the state satisfies federal reviewers that the
waiver is operated within federal guidelines relating to the health, safety, and welfare of
the participants, and the total federal spending for participants’ support does not exceed
the cost of care in an institution. These waiver programs are subjected to much closer
federal oversight than a state’s base Medicaid program.
Early Periodic Screening Diagnosis and Treatment Services for Children
Early periodic screening diagnosis and treatment (EPSDT) services are included in the
Social Security Act at section 1905(r), and are designed to serve as Medicaid’s well
child program, providing regular screenings, immunizations and primary care services
and ensure that children receive services that they need to identify and treat health
problems. EPSDT services are available for all children up to the child’s 21st birthday.
When a screening identifies a problem, EPSDT regulations require that Medicaid
eligible children receive coverage of all services necessary to diagnose, treat, or
ameliorate issues identified by the screen, as long as the services are within the scope
of section 1905(a) of the Social Security Act. For example, private duty nursing is not a
covered service in Illinois’ Medicaid State plan, but is one of the services under the
1905(a) list required to be covered for children.
Thus, EPSDT must include access to case management, home health, and personal
care services to the extent coverable under federal law. More on EPSDT is available in
the HFS’ handbook for EPSDT titled, “Handbook for Providers of Healthy Kids Services”
and appendices.
HCBS waiver services supplement, but do not supplant a state’s obligation to provide
EPSDT services. A child who is enrolled in a waiver is eligible for all EPSDT services,
and the waiver is used to provide services not covered through EPSDT or the State
plan. The combination of EPSDT, waiver services, and other State plan services allow
children with disabilities to remain in their own homes and communities and receive the
supports that they need.
Illinois HCBS Waiver Programs
In Illinois, there are nine HCBS waivers. HFS directly administers one of the nine
waivers—the Supportive Living Program (SLP). For the other eight, HFS serves as the
administrative authority by providing oversight, program monitoring, fiscal monitoring,
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and administrative coordination to secure federal funding. The programs operated by
sister agencies include the HCBS waivers for: persons with HIV/AIDS, brain injury,
physical or developmental disabilities (waivers that are operated by the Department of
Human Services), the elderly (waiver for whom is operated by the Department on
Aging), and MF/TD waiver (waiver for whom is case managed by the Division of
Specialized Care for Children, University of Illinois at Chicago). HFS is ultimately
responsible to the federal government for all the waiver programs.
Six of the nine waivers serve children under 18 years of age. The following waivers
serve adults only: waiver for the elderly (60 years of age and older), waiver for adults
with developmental disabilities (18 years of age and older) and the Supportive Living
Program waiver (for persons with disabilities who are 22 through 64 years of age and
for the elderly 65 years of age and older. More information on Illinois HCBS waivers
may be found at the following web link: http://www.hfs.illinois.gov/hcbswaivers/. This
website includes links to the operating agency of each waiver.
This report will focus on two waiver programs, the MF/TD children’s waiver and the
persons with disabilities waiver. The reason that the persons with disabilities waiver is
included is that the children in the MF/TD waiver typically transition into the persons with
disabilities waiver at 21 years of age. A few young adults transition from the MF/TD
children’s waiver into the adults with developmental disabilities waiver (DD), however,
individuals that make that transfer do not require shift nursing. Therefore the adults with
developmental disabilities waiver will not be a component of this report.
Illinois HCBS Waiver for Children who are Medically Fragile Technology
Dependent
The MF/TD waiver for children serves persons under 21 years of age who would require
institutional care in a nursing facility or hospital, if nursing and waiver services were not
provided in the home. Cost-effectiveness for eligibility is compared to service costs in a
hospital or nursing facility.
The waiver was initially approved in 1985 for a maximum of 50 children annually.
During fiscal year 2007 the waiver served 614 children. The waiver may serve up to
700 individuals per year, through 2012. The current waiver effective dates are
September 1, 2007, through August 31, 2012.
The primary expenditure for children in the MF/TD waiver is skilled nursing, a non-waiver
service. As described under the EPSDT section, the children served by the
waiver are afforded the same medical coverage provided to children receiving medical
assistance, including EPSDT services. Additional services available only under the
waiver include respite care, environmental modifications, nurse training, family training,
placement maintenance counseling, and special medical equipment and supplies not
covered by the Medicaid program.
Two significant changes were made to this program since its inception. First of all, as
part of the September 2002 MF/TD waiver renewal, nursing was removed as a HCBS
24
waiver service. Prior to this period, nursing was listed as a waiver service, rather than
an EPSDT service. At the time the waiver was renewed, HFS clarified that nursing
would continue to be provided, but be covered under EPSDT, rather than through the
waiver. This was approved by federal CMS, as it did not change the service package, it
merely clarified the funding source (EPSDT versus waiver) and followed federal
directives that services offered under a HCBS waiver, are only those not otherwise
available under base Medicaid. Today, over 900 children in Illinois are receiving
EPSDT nursing services. This includes both waiver and non-waiver children. During
fiscal year 2007, 608 MF/TD waiver children and 296 Medicaid eligible (non-waiver)
children received nursing services.
The second significant change was the creation of a standardized level of care
screening to determine waiver eligibility. The new level of care was approved as part of
the September 2007 renewal. Historically, HFS based medical eligibility determinations
on medical information, physician recommendations, and clinical information. The new
process provides a more consistent and objective way to determine initial and ongoing
eligibility. The level of care screening is being piloted in seven of the thirteen DSCC
regions and should be ready for statewide implementation no later than July 1, 2008.
In September 2007, HFS also modified the waiver by changing the comparable
institutional population, for cost comparison purposes. Modifications were made to
change from hospital and skilled pediatric nursing facility level of care to hospital and
nursing facility. During the renewal process HFS learned the previous levels of care
could not be combined because skilled pediatric nursing facilities are certified as
ICF/MR and federal rules prohibit hospital and ICF/MR level of care to be combined in
the same waiver.
Illinois HCBS Waiver for Persons with Disabilities
The HCBS waiver for persons with disabilities provides services to those individuals
under 60 years of age with disabilities (including ventilator dependent adults and
children) who would qualify for the level of care provided in a nursing facility but who,
with special services, may remain in their homes and communities. Services are also
provided to those adults over 60 years of age who were screened prior to their 60th
birthday and wish to remain in the program. Otherwise, waiver participants over 60
years of age have the option of moving to the HCBS waiver for the elderly.
The waiver was initially approved October 1, 1983, and was renewed effective October
1, 2004, through September 30, 2009. It is operated through the Department of Human
Services, Division of Rehabilitation Services’ (DRS) Home Services Program. The
waiver served 18,313 individuals during fiscal year 2007. A full array of services is
offered, including personal assistants, homemakers, adult day care, environmental
accessibility adaptations, assistive equipment, home delivered meals, personal
emergency response systems, respite care, and individual and agency-based home
health services (nursing and therapies). Many of the waiver consumers choose to direct
their own care. This includes selecting, training, and terminating (if necessary) personal
assistants and non-agency nurses and therapists.
25
26
The level of services an individual receives is based on a standardized determination of
need (DON) assessment. The DON identifies unmet needs and available supports in
the 15 activities of daily living. A composite score is derived by the assessment,
including a mini-mental status exam and the score is linked to an established cost range
with an upper limit. For those that exceed the upper limit, an exceptional care
comparison rate may be applied. These rates were based on nursing facility
exceptional care rates, which were established for medically fragile populations;
including: head trauma/spinal cord injury, AIDS, multiple complex medical needs,
complex respiratory care, or ventilator dependency. Exceptional care comparison rates
are being phased-out as the reimbursement methodology based upon the federally
required resident assessment instrument is implemented in nursing homes. HFS and
DRS have held discussions on alternate methodologies, once the exceptional care
comparison rates are completely phased-out.