Jones v. Department of Public Aid

Nos. 3-05-0550, 3-05-0906 (consol.)
______________________________________________________________________________
Filed May 1, 2007.
IN THE APPELLATE COURT OF ILLINOIS
THIRD DISTRICT
A.D., 2007
MICHAEL H. JONES, )
)
Plaintiff-Appellee, ) Appeal from the Circuit Court
) for the 14 th Judicial Circuit,
v. ) Whiteside County, Illinois
)
THE DEPARTMENT OF PUBLIC )
AID n/k/a The IL Department of )
Healthcare and Family ) No. 2005-MR-37
Services; BARRY S. MARAM, )
Director, or His Successor, in His Official )
Capacity; THE IL DEPARTMENT OF ) Honorable Vicki R. Wright
HUMAN SERVICES; and CAROL L.) Judge, Presiding
ADAMS, Secretary, or Her Successor,)
in Her Official Capacity, )
)
Defendants-Appellants. )
______________________________________________________________________________
JUSTICE O’BRIEN delivered the opinion of the court:
______________________________________________________________________________
In 1991, plaintiff Michael Jones suffered a severe spinal cord injury when he was seven years
old. Until the time he was 21 years old, Michael received in-home around-the-clock nursing care
funded through a Medicaid waiver program administered by the defendant Illinois Department of
Healthcare and Family Services (the Department) (formerly known as the Illinois Department of Public
Aid) . Michael’s eligibility under the Medically Fragile/Technology Dependent (MF/TD) home service
program lapsed when he turned 21 years of age. 89 Ill. Adm. Code §120.530, added at 28 Ill. Reg
13760 (eff. October 1, 2004) (the Code). Thereafter, the Department provided for Michael’s care
through a different Medicaid waiver program that, as applied to Michael, considerably reduced the
funds available to him for in-home care; nevertheless, the nurse providers administering to Michael
continued to serve him on a 24-hour basis as they had under the MF/TD program. Michael filed a
motion for injunctive relief pending administrative review of the change in his service plan. On July
21, 2005, the trial court granted Michael’s motion, ordering the Department to continue paying for
Michael’s care at the rate he had previously received under the MF/TD program. The trial court also
ordered the Department to pay the nursing agency providing Michael’s services for an arrearage
representing the difference between the amount that had previously regularly been paid and the amount
the Department had paid under the new program, beginning in December of 2004. On November 15,
2005, the trial court granted Michael an extension of the preliminary injunction. The Department has
filed an interlocutory appeal of both orders. We affirm the trial court orders in part and vacate in part.
FACTS
The pleadings and evidence in the record reveal the following facts. In 1991, when he was
seven years old, plaintiff Michael Jones was severely injured in a bicycle/motor vehicle accident. As
a result of the accident, Michael incurred the highest-level spinal cord injury and became severely
disabled. Michael is permanently paralyzed from the neck down and is completely ventilator dependent.
He has multifaceted critical care medical needs and requires constant monitoring and skilled nursing
services in order to survive. Michael is mentally alert. He graduated from high school with a 4.0 grade
point average and receives excellent grades at a community college near his home. He intends to
complete college and enter into a career. Michael receives disability benefits under the Supplemental
Security Income program and he is eligible for Medicaid.
Until he turned 21 years of age on November 28, 2004, Michael was eligible for, and had been
receiving, funding for in-home nursing care through a special Medicaid waiver program administered
by the Department. The program allows for the funding of in-home care of MF/TD children so long
2
as the costs of the care do not exceed the average cost that would be incurred if a child were
hospitalized for the same care. 89 Ill. Adm. Code §120.530, added at 28 Ill. Reg. 13760 (eff. October
1, 2004). The Department estimated that if Michael was hospitalized, his care would cost approximately
$49,400 per month. If Michael were to be hospitalized for his care, the cost would be covered through
Medicaid.
Under the MF/TD program, Michael was authorized to receive 136 hours of home nursing care
a week at a cost of $17,000 per month or $534 per day. This approach effectively represents around-the-
clock, 24-hour care, primarily from professional nurses. Michael’s parents have provided an additional
32 hours a week of his care. For 13 years, Michael’s caretaker nurses have been provided by Trinity
Regional Health Systems (Trinity). When Michael turned 21 years of age on November 28, 2004, he
became ineligible for the MF/TD program. Nothing about Michael’s needs or condition changed
between the time he began receiving treatment under the MF/TD program and the occurrence of his
twenty-first birthday.
When Michael “aged out” of the MF/TD program in November of 2004, his case was
transferred from the Division of Specialized Care for Children (DSCC) to the Department of Human
Services (DHS), Division of Rehabilitation Services (DRS). Michael had met with a DHS/DRS
caseworker in July of 2004. The caseworker documented the meeting as a “preliminary informational
meeting.” The caseworker categorized Michael as a “very high maintenance case” and noted that if
Michael was placed in a hospital intensive care setting, the cost of his care would approximate $40,000
per month. The caseworker also noted that at the level of funding available for Michael’s adult care,
the caseworker would not be able to develop a safe service plan for Michael. In December of 2004,
under the Medicaid waiver program administered by the DRS and pursuant to an “exceptional care”
section of the Code, the DRS implemented an interim plan that provided Michael $9,720 per month
3
for in-home nursing services. 89 Ill. Adm. Code §140.569, expedited correction at 31 Ill. Reg. 1745(eff. August 18, 2006). Under section 140.569 of the Code, the allowable rate for exceptional care is
determined by examining the average cost for the same services in a “nursing facility.” 89 Ill. Adm.
Code §140.569, expedited correction at 31 Ill. Reg. 1745 (eff. August 18, 2006). For Michael, the
funds provided under the exceptional care program translate to approximately 76 hours a week of in-
home care. It is undisputed that Michael cannot survive at home with only this reduced level of medical
attention.
Michael filed an administrative grievance challenging the reduction in funding for his in-home
care. The Department held an administrative hearing on March 31, 2005. In her findings of fact, the
hearing officer noted as undisputed that Michael is ventilator dependent with total dependency in all
activities of daily living. The hearing officer noted Michael had provided correspondence that included
a letter from his physician dated October 15, 2004, confirming his level of nursing care need at 136
hours per week. This letter, included in the record, is from Dr. Al Torres, director of the Pediatric
Home Ventilation Program at the University of Illinois College of Medicine in Peoria and a physician
of Michael’s. By way of the letter, Torres indicated his opinion that if Michael does not receive 136
hours of home nursing care per week he will require admission to the hospital. Dr. Torres reiterated
his opinion in correspondence dated June of 2005. The hearing officer also noted Michael had
provided a 12-page correspondence from his registered nurse detailing his medical needs and care
requirements and that Michael’s mother had contacted facilities servicing ventilator-dependent patients
and received estimates of $400 to $800 a day for the cost of care Michael must receive.
As noted in the hearing officer’s findings of fact, the DHS/DRS indicated its ability to address
Michael’s needs was limited by section 679. 50(d) of the Code, which sets the service cost maximum
(SCM) based on an individual’s determination of need (DON) scores. 89 Ill. Adm. Code §679.50(d),
4
amended at 31 Ill. Reg. 422 (eff. December 29, 2006). The hearing officer noted Michael had received
a DON of 73. The DHS/DRS indicated that even if Michael scored in the 80 to 100 range, his SCM
would be only $2,495 per month. Section 679.50 of the Code states, in part, that the SCM is “the
maximum amount that may be expended for services through [the home services program (HSP)] for
an individual who chooses HSP services over institutionalization.” 89 Ill. Adm. Code §679.50(a),
amended at 31 Ill. Reg. 422 (eff. December 29, 2006). The DHS/DRS also indicated to the hearing
officer that it had submitted Michael’s case to the Department to obtain his Exceptional Care Rate
(ECR) as a ventilator-assisted individual. 89 Ill. Adm. Code §682.520(c), amended at 24 Ill. Reg. 7724(eff. May 12, 2000). The Department determined Michael eligible for a maximum of $9,289 per month.
Following the hearing, Barry Maram, Director of the Department, determined the DHS/DRS decision
could not be upheld and directed the DHS/DRS to make a new decision based in part on evidence of
comparable “institutionalized costs,” evidence of which, Maram stated, the DHS/DRS had not
provided.
Following the administrative ruling, the DHS/DRS took no action. Michael filed a complaint
for mandamus and injunctive relief, asking, in part, the court compel the DHS to formulate a new
service plan for him. Michael also filed a motion for a preliminary injunction asking the trial court to
compel the Department to pay a balance due to Trinity of $48,398, a balance for which Trinity was
demanding payment and which represented the difference, approximately $8,000 per month, between
the cost for services the DHS was affording Michael and the costs he was incurring for the continuation
of his full-time at-home acute care. On July 7, 2005, the trial court entered a mandamus order directing
the DHS to formulate a new plan and to provide the Department with evidence of comparable
institutional costs. The trial court also directed no changes were to be made to Michael’s at-home
service plan pending a hearing on his motion for preliminary injunctive relief.
5
A hearing on Michael’s motion for a preliminary injunction took place on July 21, 2005.
Michael presented three witnesses, who, in part, offered testimony about Michael’s daily needs.
Because the level of acute care Michael needs to survive is not in dispute, the following is a general
overview of the detailed testimony given at the hearing. Donna Van Zuiden, a nurse with 35 years of
experience, testified she has served as an in-home nurse for Michael since he was ll years old. Van
Zuiden indicated that every system of Michael’s body is compromised and he is totally dependent for
all of his physical needs. Care of Michael requires intensive and continuous monitoring of his
equipment and his physiological systems. Michael requires 22 medications a day. During their shifts,
the nurses are continually engaged in Michael’s care. They do not perform any household chores. Van
Zuiden testified with detail about the necessity of immediate intervention to prevent a catastrophic
breakdown of Michael’s physiological systems or his equipment. Van Zuiden stated that the in-home
nurses had on many occasions precluded the necessity of a trip to the hospital for Michael. On one
occasion, when Michael was admitted to the hospital for a non-emergency procedure, his daily care
requirements were charged by the hospital at a rate of $120 per hour. His hospital stay for three days
cost $13,500.
Van Zuiden stated that if Michael were placed in a hospital setting he would need to be in the
intensive care unit. Van Zuiden testified that if in a nursing home, Michael would require his own
ventilator-trained nurse constantly attending to him. In anticipation of Michael’s impending adulthood,
in an attempt to find appropriate home care for him, Van Zuiden and Michael’s family contacted family
members, nurses’ assistants, registered nurses and lay persons. They were unsuccessful in locating
anyone who “would take [the] risk” of caring for Michael at home.
Van Zuiden indicated Michael’s nurses also provide emotional and psychological support for
Michael. They groom and dress him daily. When Michael leaves the home, nurses accompany him and
6
carry emergency equipment with them. Michael’s outings require him to use a different ventilator than
the one he uses at home; the nurses are skilled in monitoring the different parameters of the additional
ventilator. The nurses accompany Michael to school and facilitate verbal exchanges with his professors
and teacher’s aid by lip-reading Michael’s communications.
Van Zuiden also testified that Michael’s home environment allows him to maintain close
contact with his family and friends on a daily basis. Michael’s grandparents live close to him.
Michael’s grandfather visits with Michael four times a day and his grandmother weekly recites church
services to Michael and delivers communion to him. Michael’s family members take him to concerts,
racetracks and community events. Van Zuiden expressed concern that if Michael were placed in a
hospital his family members would not be able to keep up the frequency of visits. Van Zuiden also
testified that placing Michael in a hospital was placing him in “a sick place,” where he would be at
more risk of contracting infections and other diseases. For these reasons, and because Michael would
experience a loss of hope and companionship in a hospital setting, Van Zuiden opined that moving
Michael out of his home setting could result in his death.
Rebecca Mueller, another of Michael’s home nurses, also testified. Mueller has 34 years of
nursing experience. She has worked with Michael since the year 2000. In Mueller’s opinion, if
Michael is not provided home nursing services, his only alternative is placement under the high level
of observation he would receive in the intensive care unit of a hospital. Mueller expressed concern for
Michael’s survival even in a hospital setting. Mueller also testified that some of her former patients
who had transferred to institutions from home died soon thereafter. In some cases, patients of
Michael’s age asked to be removed from their ventilators.
Michael’s mother, Winifred Jones, also testified. Jones testified Michael is the youngest of four
children, all of whom regularly visit Michael and take him on family outings. Jones stated she and her
7
husband, both employed, care for Michael themselves 32 hours a week. At least one of them is also
home while Michael receives services from the in-home nurse. Michael’s parents receive 336 hours
of respite a year. Jones’s insurance pays $3,000 a month for Michael’s medication; this coverage would
be unavailable if Michael were in the hospital.
Jones testified she had contacted three hospitals to obtain quotes for Michael’s care. The
general quotes she received ranged from $1,500 to $1,800 a day. At the time of her testimony, Jones
stated there was an outstanding balance of $48,500 owed to Trinity, which had continued to provide
Michael with full care despite the reduced payment of $9,270 per month it was receiving from the
Department. Trinity issued Jones a demand for payment. She was not certain whether Trinity would
continue to provide Michael around-the-clock care if the debt was not paid.
Following the preliminary injunction hearing, the trial court found Michael had met the criteria
for preliminary injunctive relief. The trial court ordered the Department to maintain the benefits
Michael was receiving prior to his twenty-first birthday and refrain from reducing his benefits until he
had exhausted his right to administrative relief. The trial court also ordered the Department to pay
Trinity $48,398. The Department filed a motion for stay of judgment which the trial court denied. The
Department filed an interlocutory appeal of the trial court’s order of preliminary injunction which is
now before this court for review.
The Department held a second hearing on September 7 and 8, 2005. Michael’s presentation to
the hearing officer essentially indicated that which has been discussed above, and included the two
letters from Dr. Torres. The DHS/DRS presented witnesses at the hearing familiar with the Home
Service Program (HSP). These witness indicated, in part, the following. The case manager for Michael
indicated that when the DHS/DRS counselor determined that a safe service plan could not be
established for Michael within the SCM, an effort was made to maximize the number of service hours
8
available by requesting an Exceptional Care Rate (ECR). The counselor was aware the family had
attempted to find other resources to supplement the HSP.
Other DHS/DRS witnesses indicated the Exceptional Care Rate program is a rate program with
different categories of illness or care and is not based upon an individual patient. When an individual
requires multiple types of care, the care that would be the most expensive is the category used to
determine the ECR. The ventilator-dependent rate is the highest available rate. The ECR is tied to the
reimbursement rate nursing homes, in the appropriate geographical region, would receive from the
Department. The Department sets the ECR for the nursing home facilities and these are the rates that
are used to pay a nursing facility. The DHS/DRS has no authority to exceed an ECR.
In October of 2005, the Department’s director, Maram, issued the following final
administrative decision. Maram concluded that under section 684.70 of the Code (89 Ill. Adm. Code
§684.70(c), amended at 34 Ill. Reg. 433 (eff. December 29, 2006), the SCM may be exceeded for
ventilator-assisted individuals receiving HSP services. In such cases, however, the amount expended
shall not exceed the ECR established by the Department. Maram also concluded the ECR is based
upon the rate the Department pays to a nursing facility and that DHS/DRS has no control over these
rates. Maram indicated the DHS/DRS had provided a list of “comparable institution[s],” nursing homes
capable of providing services to ventilator-assisted patients. In conclusion, Maram indicated Michael
had supported his argument that should he not be afforded 136 hours a week of home nursing services,
he would require a hospital level of care. In upholding the DHS/DRS service plan, Maram stated a
hospital level of care is not within the parameters of the HSP.
Following Maram’s final decision, Michael filed a third amended complaint for declaratory
relief under the Americans with Disabilities Act of 1990 (42 U.S.C. §12132 (2000)) (ADA), review of
the Department’s final decision and permanent injunctive relief. Michael also filed a motion to extend
9
the preliminary injunction pending the trial court’s review of the administrative decision. At the
hearing on the motion to extend the preliminary injunction, the Department provided three statements
made pursuant to section 1-109 of the Code of Civil Procedure (735 ILCS 5/1-109 (West 2004)) as part
of its motion to oppose Michael’s motion. Chris Welch, a licensed nursing home administrator for
eight years and the administrator of River Park Health Care Center (River Park) for five years, stated
his facility provides care to two patients using ventilators at a Medicaid reimbursement rate of $327.89
per day. Based on his review of the affidavit of Van Zuiden, one of Michael’s nurses, and the reports
of Torres, Michael’s physician, Welch concluded there is no medical reason Michael could not be safely
served at River Park for the ECR of $327.89 per day. Cindy Waller, a nurse with 15 years experience,
including experience with pediatric at-home care for children with tracheotomies and respiratory
conditions, and who is employed as the director of nursing at River Park, made a statement that
mirrored Welch’s.
Additionally, the Department presented the affidavit of Barbara Ginder, chief of the Bureau of
Inter-Agency Coordination for the Department. Ginder testified to the following information. As of
October 31, 2005, the DRS provided services to 102 persons dependent on ventilators through the HSP.
If all 102 persons were served at an estimated cost of $17,000 per month, the estimated annual cost
would be $204,808,000, an estimated growth in the HSP of $14,586,000. Ginder also stated the history
of the MF/TD program indicates that approximately 40% of the children in the program improve and
no longer need waiver services, approximately 30% die and approximately 20% need services beyond
the age of 21. At the time of Ginder’s report, there were 34 active cases of 18 to 20- year-old
individuals, 19 of whom were ventilator dependent. Ginder stated these individuals are “likely to
transition from MF/TD to HSP (if they select) at age 21.” According to Ginder’s calculations, if all
these 19 persons received care at a cost of $17,000 per month, the net growth of the HSP program
10
would be $2,717,000 over three years.
The Department also argued that Michael had a trust fund that he could access to defray the
difference between the cost of his in-home care as fixed by the preliminary injunction and the funds
afforded under the HSP. Michael’s mother (Jones) testified she had no discretion over the trust fund.
Jones testified that she periodically received documentation from the trust and at the time of the hearing
the trust contained $270,000. Jones stated deposits from an annuity are regularly made into the trust;
she knew funds could be distributed for Michael’s college tuition and insurance premiums; and she had
never been refused a request for disbursement from the fund. The Department emphasized that if,
during the appeal process, Michael necessarily required hospitalization, Medicaid would pay his
hospital costs.
At the close of the hearing, the trial court stated its belief the scales of justice tipped in
Michael’s favor. The trial court granted Michael’s motion and extended the preliminary injunction
“until 30 days beyond the date the appellate court issues its judicial mandate regarding the interlocutory
appeal in this case.” The Department filed a second interlocutory appeal. Before this court are two
interlocutory appeals: one which challenges the trial court’s order granting Michael’s motion for a
preliminary injunction and requiring the Department to pay the arrearage to Trinity; and one which
challenges the trial court’s order temporarily extending the injunction.
ANALYSIS
A preliminary injunction is an extraordinary remedy that is applicable only in situations where
an extreme emergency exists and serious harm would result if it is not issued. Hartlein v. Illinois Power
Co., 151 Ill. 2d 142, 156, 601 N.E.2d 720, 726 (1992). Four factors must be established before the trial
court grants an injunction: 1) a clearly ascertainable right in need of protection; 2) the occurrence of
irreparable harm without the injunction; 3) an inadequate remedy at law for the injury, and 4) likelihood
11
of success on the merits. Hartlein, 151 Ill. 2d at 156, 601 N.E.2d at 726-27. Controverted facts on the
merits of the case are not decided in a ruling on a motion for a preliminary injunction. Hartlein, 151
Ill. 2d at 156, 601 N.E.2d at 727. A party seeking a preliminary injunction does not carry the same
burden of proof required to prevail on the ultimate issue. People ex rel. White v. Travnick, 346 Ill. App.
3d 1053, 1060, 806 N.E.2d 270, 276 (2004).
Review of the propriety of a preliminary injunction order is generally for an abuse of discretion;
however, when the trial court’s ruling involves a question of law, the standard is de novo. People ex
rel. White, 346 Ill. App. 3d at 1060, 806 N.E.2d at 276-77. On review, we must decide whether the
plaintiff has demonstrated a prima facie case that there is a fair question as to the existence of the right
claimed, the circumstances lead to a reasonable belief that the plaintiff probably will be entitled to the
relief sought, and the matter should be kept in the status quo until the case can be decided on the merits.
People ex rel. White, 346 Ill. App. 3d at 1060, 806 N.E.2d at 276. “Status quo” has been described as
that situation which represents the last, actual, peaceable, uncontested status preceding the pending
controversy. Postma v. Jack Brown Buick, Inc., 157 Ill. 2d 391, 397, 626 N.E.2d 199, 202-03 (1993).
Turning to the case at hand, the trial court, in granting Michael’s motion for preliminary
injunction, found the status quo to be maintained was funding by the Department for in-home care at
the rate Michael had been receiving under the MF/TD program. The Department does not dispute that
Michael will be irreparably harmed by a change in the status quo and that he has no adequate remedy
at law. The Department asserts that Michael has no clearly ascertainable right in need of protection
and, therefore, no likelihood of success on the merits. We confine our review to this disputed issue.
Michael asserts that under Title II of the ADA (42 U.S.C. §12132 (2000)), and section 504 of
the Rehabilitation Act of 1973 (29 U.S.C. §794 (2000)), he has a right to be free from unnecessary
12
institutionalization and a right to placement in the most community-integrated setting appropriate to
his needs. Because of their similarities, an analysis of the ADA applies with equal force to section 504.
Radaszewski v. Maram, 383 F.3d 599, 607 ( 7th Cir. 2004). The ADA provides that “no qualified
individual with a disability shall, by reason of such disability, be excluded from participation in or be
denied the benefits of the services, programs, or activities of a public entity, or be subjected to
discrimination by any such entity.” 42 U.S.C. §12132 (2000). The ADA recognizes that the unjustified
isolation of the disabled is discriminatory. Olmstead v. Zimring, 527 U.S. 581, 597, 144 L. Ed. 2d 540,
555-56, 119 S. Ct. 2176, 2185 (1999). Recognition that the unjustified isolation of the disabled is a
form of discrimination reflects two evident judgments: institutional placement of persons who can
handle and benefit from community settings perpetuates unwarranted assumptions that persons so
isolated are incapable or unworthy of participation in community life; and confinement in an institution
severely diminishes the everyday life activities of individuals, including family relations, social
contacts, work options, economic independence, educational advancement, and cultural enrichment.
Olmstead, 527 U.S. at 600-01, 144 L. Ed. 2d at 558, 119 S. Ct. at 2187.
Under regulations promulgated to enforce the ADA, “[a] public entity shall administer services,
programs, and activities in the most integrated setting appropriate to the needs of qualified individuals
with disabilities.” 28 C.F.R. §35.130(d) (1998). The “most integrated setting appropriate” is a “setting
that enables individuals with disabilities to interact with nondisabled persons to the fullest extent
possible.” 28 C.F.R. pt. 35, app. A, at 450 (1998). The “integration mandate” requires that qualified
individuals be placed in community-based programs when the state’s treatment professionals have
determined community placement is appropriate, the placement is not opposed by the affected
individual and the placement can be reasonably accommodated, taking into account the resources
available to the state and the needs of others with mental disabilities. See Olmstead, 527 U.S. at 587,
13
144 L. Ed. 2d at 549-50, 119 S. Ct. at 2181 (deciding the proper construction of the ADA with respect
to the requirements of placing mentally disabled persons in community settings rather than in
institutions). States must adhere to the ADA’s nondiscrimination requirement with regard to the
services they in fact provide (Olmstead, 527 U.S. at 603 n.14, 144 L. Ed. 2d at 559 n.14, 119 S. Ct. at2188 n.14), and are required to make “reasonable modifications in policies, practices, or procedures”
that are necessary to avoid discrimination on the basis of disability (28 C.F.R. §35.130(b)(7) (1998)).
The integration mandate is not “boundless.” Olmstead, 527 U.S. at 603, 144 L. Ed. 2d at 559,
119 S. Ct. at 2188. The state may argue as a defense that rather than reasonable, a modification would
result in a “fundamental alteration” of the state’s services and programs. Olmstead, 527 U.S. at 603,
144 L. Ed. 2d at 559, 119 S. Ct. at 2188; 28 C.F.R. §35.130(b)(7) (1998). Courts are to remain
sympathetic to the fundamental alteration defense and give states “leeway” in administering services
for the disabled. Olmstead, 527 U.S. at 605, 144 L. Ed. 2d at 560-61, 119 S. Ct. at 2189. An analysis
of the state’s fundamental alteration defense is a complex one, involving an array of factors. See
Olmstead, 527 U.S. at 604-606, 144 L. Ed. 2d at 560-61, 119 S. Ct. at 2188-2190 (rejecting as
unacceptable a “simple” comparison of community placement versus institutional confinement costs).
The ADA does not guarantee that each recipient of state medical benefits will receive a level
of health care tailored precisely to the recipient’s particular needs. Radaszewski, 383 F.3d at 609.
Nevertheless, courts have recognized a state may violate the ADA when it refuses to provide an existing
benefit to a disabled person that would enable that individual to live in a more community-integrated
setting. Radaszewski, 383 F.3d at 609. Under Olmstead, the failure to provide Medicaid services in
a community-based setting may constitute a form of discrimination. Townsend v. Quasim, 328 F.3d
511, 516-17 (9th Cir. 2003). Requiring a state to create an entirely new program, providing heretofore
unprovided services to a disabled person, is not a reasonable modification; requiring a state to offer
14
services in a home or community-based setting that are available in an institution may be considered
reasonable. Townsend 328 F.3d at 517-18. Nothing in Olmstead, or in the regulations promulgated
under the ADA, conditions a claim under the ADA on proof that the services a plaintiff wishes to
receive in a community-integrated setting exists in exactly the same form in the institutional setting.
Radaszewski, 383 F.3d at 611.
In seeking a preliminary injunction, Michael asserted he has a right, under the ADA, to continue
to receive nursing care in his home, the least expensive, most integrated setting appropriate to his needs.
The Department asserts Michael’s needs could be accommodated in a nursing home facility. This
argument is belied not only by the detailed testimonies of Michael’s mother, nurses and physician, but
by the Department’s own findings. Michael’s mother, nurses and physician all indicated if Michael
does not receive around-the-clock individual nursing care his only alternative is placement in a hospital.
Furthermore, in a preliminary investigation, a caseworker found that Michael could not be safely
accommodated within the present limits of the HSP program, and the Department’s Director, in the
final administrative decision, found Michael’s evidence supported his assertion that absent the level
of care he had been receiving at home under the MF/TD program, he would require hospitalization.
The only evidence the Department has offered to the contrary are the statements of two nursing facility
employees who, based on an indirect review of the statements of Michael’s caregivers and without
personally examining Michael, concluded the nursing facility by which they were employed could
accommodate Michael’s needs.
The stronger evidence supports a finding that the appropriate reference point for comparable
costs for Michael’s care is not a nursing home facility, but a hospital, where his need for constant
monitoring and continuous skilled assistance could be accommodated. Michael cannot be left
unattended for any amount of time and needs the attention of highly trained personnel. His needs are
15
acute and the potential for a medical crisis ever present. When the family attempted to locate personal
assistance for Michael to supplement the HSP, they were unable to find anyone to assume “the risk.”
It is undisputed Medicaid would cover the cost of Michael’s hospitalization, a cost more expensive than
the in-home care Michael has been receiving.
In a sense, Michael is simply requesting that a service for which he would be eligible under
Medicaid be provided in his home where he has heretofore received that type of care. Moreover, it is
undisputed that the HSP provides funding, albeit limited under the ECR, for the same services Michael
was receiving under the MF/TD program. Michael is not requesting a new program, but a modification
of one the Department has in place. The Department’s limited evidence on projected costs for
individuals similar to Michael does not clearly establish what level of funding it considers would be
necessary to accommodate individuals with disabilities comparable to those of Michael, or into which
category it is placing him. Although it is evident the Department would have to increase the level of
expenditures it would make under the existing HSP directive, this alone does not defeat Michael’s
claim. See Radaszewski, 383 F.3d at 614 (stating that if, as the plaintiff represented, it would cost the
state no more and possibly less to care for the plaintiff’s son at home than it would to care for him in
an institution, it would be difficult to see how requiring the state to pay for at-home care would amount
to an unreasonable, fundamental alteration of its programs and services). It is likely that the most
integrated setting appropriate to Michael’s needs is one the Department can reasonably accommodate,
particularly when it is evident the only alternate is to place Michael in the much more expensive setting
of a hospital intensive care unit, a situation his home caregivers have, for the most part, heretofore
prevented.
Michael is a qualified individual with a disability who has a right to participate in the
Department’s programs in the most integrated setting appropriate to his needs. It has been
16
demonstrated that the most integrated setting for Michael is his home, where he has thrived for 13
years. Michael has handled heroically and benefitted significantly from participation in home and
community life. His everyday activities heretofore include interacting with family and friends,
participating in social and cultural events, seeking educational advancement and preparing to become
economically independent. Michael, his family and his caregivers are enthusiastically in favor of his
continued placement in the home. The evidence strongly suggests that if placed in an institutional
environment, with the resultant loss of the benefits of his integrated setting, Michael will cease to
flourish as he has at home. It has also been demonstrated by the Department that it is possible to
accommodate Michael’s needs at home. Michael’s condition has not changed, only his age has changed.
It seems likely the Department can accommodate the needs of Michael and others like him with
reasonable modification to existing programs. The cost of caring for Michael at home would not exceed
the cost of the comparable facility capable of meeting his needs, the intensive care unit of a hospital.
It is possible that at a full trial, the Department may be successful in supporting a fundamental alteration
defense. However, controverted facts on the merits of the case are not decided in a ruling on a motion
for a preliminary injunction; here, we are evaluating the probability of Michael’s success on the merits
and we consider it high. For these reasons, we conclude the trial court did not err in ruling that
preliminarily, the Department maintain the status quo and continue to allow Michael in-home care at
the cost the Department provided to him under the MF/TD service program.
The Department also argues on appeal that under the doctrine of sovereign immunity, the trial
court did not have the jurisdiction to order the Department to pay the amount owed to Trinity for the
difference between what Trinity had been receiving for Michael’s care under the MF/TD program and
the amount it received under the Department’s HSP service order until the time the trial court entered
the preliminary injunction order. On this issue, we agree with the Department. The State Lawsuit
17
Immunity Act (745 ILCS 5/1 et seq. (West 2004)) (the Act), with certain exceptions, provides the State
immunity from suit as a party or defendant in any court. Board of Education of the City of Peoria,
School District No. 150 v. Sanders, 150 Ill. App. 3d 755, 758, 502 N.E.2d 730, 732 (1986). A claim
that potentially subjects the State to liability is the exclusive jurisdiction of the Illinois Court of Claims.
In re Lawrence M., 269 Ill. App. 3d 253, 256, 645 N.E.2d 1069, 1071 (1995).
In determining whether an action is brought against the State, it is the issues involved and the
nature of the relief sought that are controlling. In re Lawrence M., 269 Ill. App. 3d at 256, 645 N.E.2d
at 1071. Claims for present relief against the State are barred by sovereign immunity; claims for
prospective relief, such as an injunction to prevent a State official from taking action in excess of
delegated authority or to perform a recognized duty, are not barred under sovereign immunity. Welch
v. Illinois Supreme Court, 322 Ill. App. 3d 345, 358, 751 N.E.2d 1187, 1198 (2001); In re Lawrence
M., 269 Ill. App. 3d at 257, 645 N.E.2d at 1071. Where, as in the instant case, a claim against the State
is essentially a claim for payment of services rendered, which the State challenges as a debt it does not
owe, the suit is barred under sovereign immunity and the trial court lacks the jurisdiction to decide the
matter. Children’s Memorial Hospital v. Mueller, 141 Ill. App. 3d 951, 955-56, 491 N.E.2d 103, 106
(1986) (finding a suit founded upon a contract with the State and which seeks to impose a monetary
obligation on the State is within the exclusive jurisdiction of the Court of Claims). For these reasons,
we conclude the trial court did not have jurisdiction to order the Department to pay Trinity the amount
due and that portion of the trial court’s order must be vacated. Our decision does not address whether
Michael has a claim against the Department for the debt owed to Trinity; we conclude only that the
circuit court is not the appropriate forum for this claim.
For the foregoing reasons, the judgment of the circuit court of Whiteside County is affirmed
in part and vacated in part.
18
Affirmed in part and vacated in part.
CARTER, J., concurs.
JUSTICE McDADE, specially concurring in part, dissenting in part:
The majority has found that the trial court did not err in ruling that preliminarily, the
Department must maintain the status quo and continue to allow Michael in-home care at the cost
the Department provided to him under the MF/TD service program and that the trial court did not
have jurisdiction to order the Department to pay Michael’s past due home health care bills.
Because I disagree with the majority’s second finding, I respectfully dissent.
In my opinion the nature of the relief sought in this case is not “a claim for payment of
services rendered” against the Department or DHS. Rather, the principal relief Jones seeks is
maintenance of adequate funding for his in-home medical care. Therefore, I would find that
sovereign immunity does not bar the trial court’s order.
“In a proper case, the court may be authorized to grant a preliminary injunction or other
appropriate preliminary relief to maintain the status quo during the pendency of an action for
declaratory relief.” (Emphasis added.) Millikan v. Jensen, 4 Ill. App. 3d 580, 584, 281 N.E.2d 401,
404 (1972). In this case, the “last actual, peaceable, uncontested status preceding the controversy”
(Limestone Development Corp. v. Village of Lemont, 284 Ill. App. 3d 848, 853, 672 N.E.2d 763,
767 (1996) (defining status quo)) was that time when defendants provided that funding, not after it
terminated funding. The circuit court’s order seeks to maintain that status by ordering it to pay the
outstanding bills and to continue to pay them. Absent the court’s order, the parties’ status would
change dramatically. The court’s order effectively and correctly maintains the status quo and
should be affirmed.
The majority relies upon Children’s Memorial Hospital v. Mueller, 141 Ill. App. 3d 951,
19
955-56, 491 N.E.2d 103, 106 (1986), to hold that sovereign immunity applies in this case.
However, there, the court held that “a suit to compel a State official to perform his duty according to
statutory authority or regulations is a suit against the State officer, not against the State itself. “
(Emphasis in original.) Mueller, 141 Ill. App. 3d at 955, 792 N.E.2d at 105. In this case, the nature
of the relief Jones seeks is for defendants to comply with their obligation under the State Medicare
program, the ADA, and section 504 of the Rehab Act to provide him with their services in a non-
discriminatory fashion. Jones has alleged that when defendants stopped paying Trinity under the
MF/TD program they were acting in a discriminatory fashion in violation of the statutes. Any
deficiency in the amount Trinity received under the Department’s HSP service order until the time
the trial court entered the preliminary injunction order was, therefore, caused by a state officer not
performing his duty in accordance with statutory authority. The order to pay the past amount due is,
in effect, an order that the Department should have continued funding for in home care in
accordance with the statutes. In other words, the order maintains the status quo. Therefore, under
Mueller, sovereign immunity does not apply and the court could appropriately order payment of the
past due bills in the preliminary injunction.
For all of the foregoing reasons, I would hold that the circuit court had jurisdiction to order
payment of Jones’s past due bills for in-home medical care. Accordingly, I respectfully dissent
from that portion of the majority’s order.
20