2012mftd

              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
Pat Quinn, Governor
Julie Hamos, Director
January 2012
Pat Quinn, Governor
Julie Hamos, Director
201 South Grand Avenue East Telephone: (217) 782-1200
Springfield, Illinois 62763-0002 TTY: (800) 526-5812
Governor Quinn and Honorable Members of the General Assembly:
I am pleased to present this report, in compliance with Public Act 095-0622, regarding
existing services offered under paragraph 7 of Section 5-2 of the Illinois Public Aid Code
to persons who are medically fragile, technology dependent. This report provides
detailed information on the home and community-based services waiver for children
who are medically fragile, technology dependent, including numbers served,
expenditures, utilization of waiver and non-waiver services, and the number of children
who have aged out of the waiver since July 1, 2009.
The report is a bi-annual report and was prepared in collaboration with the University of
Illinois at Chicago, Division of Specialized Care for Children. I will take this opportunity
to express my appreciation for their support.
Sincerely,
Julie Hamos
Director
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 Medically Fragile,
Technology Dependent Waiver Children...…………………………… 4
Table 2. Waiver Services Provided to Medically Fragile, Technology
Dependent Waiver Children…………………………………………… 4
Table 3. Basic Medicaid Services Expenditures by Cost Comparison
Group………………………………………………………. 5
Table 4. Basic Medicaid Services Detailed Expenditures………. 5
Table 5. Comparative Costs – Institutions …………………………. 7
PROGRAM INITIATIVE ................................................................................... 10
GLOSSARY …………………………………………………………………………... 11
INDEX OF WEB LINKS………………………………………….………………….… 12
Appendix I Background on Home and Community Based Services Waivers and
Medicaid programs and services…........................................................................ 13
i
Report of Medicaid Services for Persons who are
Medically Fragile, Technology Dependent
Public Act 95-0622
January 2012
INTRODUCTION
On September 17, 2007, Public Act 95-0622 was enacted and amended the Illinois
Public Aid Code (305 ILCS 5/5-2.05) in provisions concerning services for children
under Medicaid. The Act requires the Department of Healthcare and Family Services to
make a bi-annual report on even numbered years beginning January 1, 2008. This
report outlines Medicaid services offered to children and young adults with disabilities
who are medically fragile, technology dependent.
The Act also 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 settings for the same or
lower cost. The DHS report is also bi-annual and is required on even numbered years
beginning March 1, 2008.
Finally, the Act 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 with the last report
due in January 2010. This Act has been superseded by the reporting requirements of
Public Act 95-0622.
This report is being submitted to satisfy the requirements of Public Act 95-0622 related
to services for children and young adults with disabilities who are medically fragile,
technology dependent in accordance with (305 ILCS 5/5 – 2.05).
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STATUS OF SERVICES UNDER 5/5-2(7) OF THE PUBLIC AID CODE
At 305 ILCS 5/5-2(7), the Illinois Public Aid Code authorizes a home and community
based services waiver program for children. The waiver program for children and young
adults who are medically fragile, technology dependent (MFTD) 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 MFTD 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.
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 (since
July 2009).
State fiscal year 2010 data have been used, except where otherwise stated.
Additionally, nursing facility is being used as the cost comparison population. The
HCBS waiver was renewed effective September 1, 2007. At that time, the comparable
population for cost comparison was changed from hospital and Intermediate Care
Facility for the Developmentally Disabled (ICF/DD)-Skilled Nursing Facility for Pediatrics
(SNF/Ped) to hospital and nursing facility. The department studied options for cost
comparison including skilled nursing facilities and exceptional care, rehabilitation,
ventilator, children's and general hospitals. A blend of hospital and skilled nursing
facilities was ultimately selected as the cost comparison.
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Historically, the department used a combined cost comparison of an ICF/DD–SNF/Ped
and hospital level of care. During September 2007 waiver renewal discussions with the
federal Centers for Medicare and Medicaid Services (CMS), HFS learned that the
ICF/DD cost comparison could not be combined with hospitals for persons with
disabilities, with the exception of waivers for individuals with brain injury. Therefore, the
nursing facility and hospital cost comparisons were selected.
1. Number of Persons Who Currently Receive Waiver Services.
As of September 1, 2011, 519 children received services in the MFTD waiver. This
number is lower than the 619 referenced in the report’s services and expenditure charts,
because it is based on a point in time. The 619 figure is based on the total number of
unduplicated children served in the waiver from July 1, 2009 through June 30, 2010.
This is the most recent year of complete claims data. The State may submit claims for
federal match up to two years after the date of payment.
2. Nature, Scope, and Cost of Waiver Services.
Home and community based waiver services are services not otherwise covered under
the Medicaid program. Title 1915c allows the State to waive certain requirements in
order to provide specialized services, other than room and board to individuals who
would otherwise require an institutional level of care. Waivers allow states to cover a
wide-range of services to a targeted population as long as services are needed to keep
a person from being institutionalized.
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.
Tables one through five provide detailed information regarding waiver and non-waiver
services and expenditures.
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Nursing services, hospital care, durable medical equipment and supplies, are services
most frequently used by children in the MFTD waiver. These services are regular State
Plan Medicaid services, available to waiver participants, and do not require the child to
be in a waiver. They are shown in Table 1 below.
Table 1. Basic Medicaid Services Provided to MFTD Waiver Children
State Fiscal Year 2010
Total Waiver Children: 619
Basic Medicaid Service Unduplicated
Participants Receiving
Services
Total Expenditures of
Service
Average Per
Capita Per User
of Service
Nursing 585 $64,408,022 $110,099
Inpatient Hospital 318 $15,060,481 $47,360
Prescription Drugs 575 $6,311,176 $10,975
Medical Supplies 560 $4,204,045 $7,507
Medical Equipment 488 $3,831,072 $7,851
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. Of the 619 waiver participants, 491 received waiver
services. The other 128 participants received case management through the waiver and
nursing and other medical services through the State Plan. Table 2 shows the utilization
of waiver services in FY 2010.
Table 2. MFTD Waiver Services
State Fiscal Year 2010
Total Children: 619
Basic Medicaid Service
Unduplicated
Participants
Receiving Service
Total
Expenditures of
Service
Average Per
Capita Per User of
Service
Respite Care 438 $2,128,160 $4,859
Environmental Modification 180 $184,783 $1,027
Special Equipment* 37 $177,066 $4,786
Nurse Training 10 $5,212 $521
Placement Counseling 1 $488 $488
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 by the Medicaid program.
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Children enrolled under the MFTD 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 nursing facility services. Of the 619 waiver
participants, 617 received other covered Medicaid services.
Table 3 includes breakdowns of unique users, total costs, and the average cost per
child of other Medicaid covered services:
Table 3. Basic Medicaid Services Expenditures by Cost Comparison Group
State Fiscal Year 2010
Total Waiver Children: 619
Level of Care
Cost Comparison
Number of
Participants
Total
Expenditures
Average Per
Capita
Hospital 610 $99,488,004 $163,632
Nursing Facility 9 $294,353 $32,706
Table 4 details the five largest categories of non-waiver (basic Medicaid) services and
all other expenditures by cost and percent of total costs for children enrolled in the
MFTD waiver. These categories are: Private Duty Nursing and other Nursing Services,
Inpatient Hospital Services, Prescription Drugs, Medical Supplies, and Medical
Equipment.
Table 4. MFTD Basic Medicaid Services Detailed Expenditures
State Fiscal Year 2010
Total Children: 619
Private
Duty/Other
Nursing
66.20%
Inpatient
Hospital
Services
15.48%
Medical
Equip.
3.94%
Medical
Supplies
4.32%
Prescription
Drugs
6.49%
Other
3.57%
Service Expenditures
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Table 4. MFTD Basic Medicaid Services Detailed Expenditures (Continued)
State Fiscal Year 2010
Total Children: 619
Service Breakdown Total Cost Percent%
Nursing Services $64,408,022 66.20%
Inpatient Hospital Services $15,060,481 15.48%
Prescription Drugs $6,311,176 6.49%
Medical Supplies $4,204,045 4.32%
Medical Equipment/Prosthetic Devices $3,831,072 3.94%
All Other Total* $3,475,470 3.57%
Total Expenditures $97,290,266 100.0%
Breakdown of All Other
Physician Services $1,194,275 1.23%
Therapies (Physical, occupational & speech;
includes EI therapies) $745,242 0.77%
Outpatient Services $539,291 0.55%
Early Intervention Services (Excludes therapies) $221,943 0.23%
All Other Medical Services (Lab, x-ray, optical,
dental, audiology, podiatry, healthy kids services,
mental health, transportation, & others) $774,717 0.80%
Note: The School-Based Health Services expenditures totaling
$1,188,486.43 are included in the nursing, therapies and all other
medical service categories identified above.
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3. Comparative Cost of Providing Those Services in a Hospital, Skilled Nursing
Facility, or Intermediate Care Facility.
As stated previously, the SNF/Ped cost comparison was replaced by nursing facility
when the waiver was renewed. In fiscal year 2010 hospital and skilled nursing facility
were used as the cost comparison. The following table shows the institutional costs for
the comparable population. These costs cover both institutional costs and Medicaid
ancillary costs for services provided while in the institution, but not covered in the
hospital or nursing facility rate.
Table 5. Per Capita Comparative
Institutional Costs
State Fiscal Year
Level of Care Average Per Capita Cost
Hospital
Comparison
Group
$188,185.77
Nursing Facility
Comparison
Group $90,928.26
4. Funding Sources for the Provision of Services, Including Federal Financial
Participation.
Funding for MFTD waiver services is appropriated to HFS from the General Revenue
Fund. Claim expenditures are then submitted to the federal government for federal
financial participation. 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.
During the reporting period of July 1, 2009 through June 30, 2010, the state received an
enhanced federal matching rate of 61.88% through the American Recovery and
Reinvestment Act (ARRA). The enhanced federal match was available from October 1,
2008 through September 30, 2011.The percentage of match varied based on the
claiming quarter. It ranged from 61.88% at its highest to 50.20% at its lowest.
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5. Qualifications, Skills and Availability of Caregivers for Children Receiving
Services.
Home Health Agencies
Illinois has an enrollment of 342 home health agencies, but only a specialized group of
nursing agencies serves the technology-dependent pediatric population with shift
nursing care. There are 45 home health agencies or private duty nursing agencies.
There are also two alternative child care models enrolled with HFS and approved by
DSCC to provide nursing services in the waiver program. These are licensed as
community-based health care centers.
DSCC has specific guidelines for approving providers of private duty nursing services
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 MFTD HCBS waiver. The same qualifications apply to
the State Plan private duty nursing services. Nurses and CNAs must be employed by a
DSCC approved nursing agency, except those providing services in a children’s
community-based health center who are employed directly by the health center.
Agencies providing home-based services must constantly compete with recruitment
strategies and wages offered by institutions and the general shortage of available
nurses. Due to the changes in the economy, however, more nurses are reentering the
workforce or not retiring. DSCC has noticed this shift and has reported that they have
been able to staff cases in all areas of the state. There are also no children waiting for
discharge from a hospital due to lack of nursing.
Medically Supervised Day Care
Medically supervised day care provides skilled nursing care in a daycare setting as an
alternative to in-home nursing 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.
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Environmental Modifications and Specialized Medical Equipment and Supplies
Providers of waiver services, such as environmental modifications and specialized
medical equipment and supplies, 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. In addition to HFS
enrollment requirements, 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 1641 home medical equipment
providers enrolled in the Medical Assistance Program. Of that number 76 meet the
additional DSCC requirements for serving waiver children.
Placement Maintenance Counseling
This service provides short-term, issue-specific family counseling or individual
counseling for the purpose of maintaining the child in the home. 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, 2009 through present, 28 individuals aged out of the waiver.
This means that the child has reached his or her 21st birthday.
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PROGRAM INITIATIVE
P.A. 096-1501 directed the Department to convene a stakeholder group to review how
the programs and waivers may be changed to increase the efficiencies in program
delivery and decrease the costs to the State. As of December, 2011, five meetings
have been held to discuss what is working, what is not working and what components of
a new system for children with complex medical needs should include. More
information will be reported in the Medical Program’s 2011 Annual report, but there has
been consensus for change in several key components including the areas of access
and referral, eligibility and assessment of need for services, flexibility of services,
expanded care coordination and quality improvement.
First, there needs to be a single point of entry to assure access and appropriate
referrals with electronic capabilities to share information and track information. Eligibility
determination should be separated from delivery of services and care coordination to
avoid conflict of interest. Services should be based on medical need; resources should
be targeted for those with the most complex needs; and service plans should be more
flexible. The State should consider establishing a distinct unlicensed provider type that
through client specific training and oversight may allow reduced reliance on licensed
staff as well as address staffing challenges. Care coordination should be expanded to
manage all care for the child through partnerships including promoting health, facilitating
linkages to services, assuring follow-ups, assisting with housing issues, social factors
and family dynamics, interfacing and coordinating with other entities providing services,
and identifying changes in condition promptly to address needed changes in care.
Lastly, quality outcomes should be established to assure care coordination meets the
needs of the children and improves health outcomes. In addition, per P.A. 96-1501, the
Department and stakeholders are examining and will make recommendations with
respect to cost-sharing by parents to pay for services on a sliding fee basis.
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ARRA American Recovery and Reinvestment Act
CMS Centers for Medicare and Medicaid Services
CNA Certified Nurse Aide
DCFS Department of Children and Family Services
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
MFTD Medically Fragile, Technology Dependent
RN Registered Nurse
SLP Supportive Living Program
SNF/PED Skilled Nursing Facility for under 22 Years of Age
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INDEX OF WEB LINKS
The following provides a list of links referenced in the report:
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
Illinois HCBS waivers homepage including links to each operating agency
http://www.hfs.illinois.gov/hcbswaivers/
Children with Developmental Disabilities Waivers (DD)
http://www.dhs.state.il.us/page.aspx?item=32253
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Appendix I
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.
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
modifications, 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, 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 MFTD children’s waiver and
the two HCBS waivers for children with developmental disabilities that were
implemented July 1, 2007. These programs are known as the Support Waiver for
Children with Developmental Disabilities and the Residential Waiver for Children with
Developmental Disabilities. http://www.dhs.state.il.us/page.aspx?item=32253
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.
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The number of participants in an HCBS waiver program may be capped, although once
a participant is 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 federal CMS determines 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.
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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,
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 MFTD 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.
Illinois HCBS Waiver for Children who are Medically Fragile Technology
Dependent
The MFTD 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 2010 the waiver served 519 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 MFTD waiver is skilled nursing, a non-waiver
service. The children served by the waiver are afforded the same medical coverage
provided to children receiving medical assistance. 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.
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In 2009, HFS implemented a standardized level of care screening tool to determine
waiver eligibility. This new process, codified in rule on March 1, 2009, provides a more
consistent and objective way to determine initial and ongoing eligibility, based on
medical and technology needs criteria.
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