The opinion of the court was delivered by: Judge Rebecca R. Pallmeyer
MEMORANDUM OPINION AND ORDER
Medicaid funding was once available only to pay for an individual to receive care in an institution. Today, states may "waive" the need for individuals to receive services in an institution and, instead, provide funding for home or community-based medical care for Medicaid-eligible individuals. Federal matching funds are available for home or community-based care, however, only if the services provided cost no more than it would cost to care for the individual in an institutional setting. Subject to this and other prerequisites for federal approval, each state may define the terms of its waiver programs. In this case, the parties debate whether an existing Illinois waiver entitles a severely disabled adult-who requires a hospital-level of care to survive--Medicaid benefits enabling him to receive this care at home.
Plaintiff David Grooms suffers from Type II Glycogen Storage Disease ("GSD Type II"), a genetic disorder which progressively affects skeletal muscle and muscles involved in respiration. He retains his cognitive ability but is quadriplegic and suffers from a variety of other, related ailments. Until he reached age twenty-one, the Illinois Department of Healthcare and Family Services ("HFS") paid for Grooms to receive care in his home through the Illinois Medicaid program. As described in more detail below, Grooms's home care was funded by the Medically Fragile Technology Dependent Children's ("MFTDC") waiver. The MFTDC program pays for a participant's home care so long as the cost of home care does not exceed the cost of care in a hospital or skilled pediatric nursing facility. On his twenty-first birthday, however, Grooms "aged out" of that program and is now eligible for Medicaid-funded home care under the Persons with Disabilities Medicaid waiver ("PWD"). The State of Illinois has opted to provide home or community-based care for disabled adults only if the cost of such care does not exceed the cost of care in a nursing facility. Under Illinois law, Grooms is therefore now eligible only for home care at a nursing-facility level of care and can receive hospital-level of care only in an institution.
Several key facts are undisputed. First, Grooms is Medicaid-eligible. Second, Defendant has not challenged Plaintiff's evidence that a nursing facility level of care is inadequate to Grooms's needs, and that only a hospital level of care--including many hours per day of nursing care-is appropriate for him. Third, although neither side has acknowledged it explicitly, both parties appear to recognize that, were Grooms to receive care in an institution rather than at home, Medicaid would pay for the care he needs. Fourth, the PWD waiver provides for home or community-based care only up to a nursing facility level of care, which is less than a hospital-level of care. In this lawsuit against Defendant Barry S. Maram, the Director of HFS, Grooms contends that by choosing to cap the benefits it will provide for Grooms's home care at the cost of nursing home care, HFS has violated the "integration mandate" of the Americans with Disabilities Act, 42 U.S.C. § 12132, and the Rehabilitation Act, 29 U.S.C. § 794(a), see 28 C.F.R. §§ 35.130(d) and 41.51(d). The case was set for a bench trial in October 2007. After opening statements, however, it became clear that the only disputed issue is the applicability of the integration mandate in this case-a pure question of law-so the court ordered summary judgment briefing on the issue. Having now reviewed the briefs on HFS's motion for summary judgment, the court concludes HFS is not entitled to judgment in its favor, as explained below.
HFS operates Illinois's Medicaid program under Title XIX of the Social Security Act, 42 U.S.C. § 1396. Under the Title XIX health care assistance program, the federal government provides funding for Medicaid programs administered and partly funded by the states pursuant to state-established guidelines for low-income individuals and families. Specifically, the Medicaid program provides federal funds to enable states to "furnish (1) medical assistance on behalf of families with dependent children and of aged, blind, or disabled individuals, whose income and resources are insufficient to meet the costs of necessary medical services, and (2) rehabilitation and other services to help such families and individuals attain or retain capability for independence or self-care." 42 U.S.C. § 1396. The state may elect to provide certain services in its Medicaid program, including private-duty nursing services, which may be available at the recipient's home, at a hospital, or at a skilled nursing facility. See Radaszewski ex rel Radaszewski v. Maram, 383 F.3d 599, 601 (7th Cir. 2004). For a proposed program to qualify for federal funds, the United States Secretary of Health and Human Services ("HHS") must approve it. Id.; 42 U.S.C. § 1396a. Once a state's plan is approved, the federal government agrees to pay (among other obligations) an amount equal to the statutorily-defined "Federal medical assistance percentage" of the state's quarterly medical assistance expenditures. 42 U.S.C. § 1396b(a)(1).
A state with an approved Medicaid plan may also apply to the Secretary of HHS for a "waiver," which allows the state to include as "medical assistance" payments for "home or community-based services" (as opposed to institutional services) that the Secretary has approved and that are provided pursuant to a written plan of care. 42 U.S.C. § 1396n(c)(1). In order for the state to qualify for such a waiver, the home or community based services it provides must be available to "individuals with respect to whom there has been a determination that but for the provision of such services the individuals would require the level of care provided in a hospital or a nursing facility . . . the cost of which could be reimbursed under the State plan." Id. In other words, an individual is eligible for services under the a waiver only if, absent home or community-based care, he or she would be entitled to Medicaid benefits enabling him or her to receive care in an institution. In addition, the state must provide the Secretary satisfactory assurances that, among other things, the waiver is cost-neutral: the average per capita expenditure estimated by the State for medical assistance may not exceed the average estimated per capita expenditure that would have been required absent the waiver. 42 U.S.C. § 1396n(c)(2)(D). The parties agree that the Secretary of HHS has approved for Illinois two waivers relevant to this action: the MFTDC waiver and the PWD waiver. (Am. Ans. ¶ 17.) Waivers providing home or community-based care for qualified adults constitute Illinois's Home Services Program ("HSP"). Often, provision of care at home is less expensive than institutional care. Thus, according to one court, the HSP has proven "very cost-effective." Radaszewski ex rel. Radaszewski v. Maram, No. 01 C 9551, 2008 WL 2097382, at *7 (N.D. Ill. Mar. 26, 2008). In 2005, HFS reported a savings of $13,676 per participant (with 19,827 participants): community care cost per participant cost $19,140 per year, while cost to care for each participant in an institution was $32,816 per year. Id.
Grooms has taken advantage of the waiver programs available to him both as a child and as an adult. First, until his twenty-first birthday, Grooms participated in the MFTDC waiver program. Pursuant to the MFTDC program, the State has adopted regulations requiring HFS to "administer a home and community-based service (HCBS) waiver program . . . for disabled persons under the age of 21 years who are medically fragile and technology dependent." 89 Ill. Adm. Code § 120.530(a); see also http://www.hfs.illinois.gov/hcbswaivers/tdmfc.html. By its terms, this waiver program applies to individuals who would otherwise require a level of care provided by a hospital or a facility certified by the State to provide long-term care for persons under twenty-two years of age. 89 Ill. Adm. Code § 120.530(b). Eligible ventilator-dependent individuals, such as Grooms, are entitled to reimbursement for home care so long as the cost of such care does not exceed the cost of hospital-level care. 89 Ill. Adm. Code § 120.530(e)(3)(A).
Now that he is an adult, Grooms receives home care as a participant in the PWD waiver. That waiver, for which disabled individuals under the age of sixty may qualify, differs from the MFTDC waiver in several ways.*fn1 The PWD waiver enables HFS to fund home or community-based care at a nursing facility-level of care for eligible adults with physical disabilities who would otherwise be forced to live in a nursing facility. See 89 Ill. Adm. Code §§ 676.10(a), 676.30(j), 676.40, & 682.100; http://www.hfs.illinois.gov/hcbswaivers/disabilities.html. In contrast to the MFTDC waiver, which is administered by the University of Illinois Division of Specialized Care for Children, Illinois's Department of Human Services bears direct operational responsibility for the PWD waiver. 89 Ill. Adm. Cod § 676.10(b). The State's PWD waiver uses a Service Cost Maximum ("SCM") to limit the benefits available to participants; the individual's SCM directly corresponds to the cost the State would bear for providing nursing care for the individual in an institutional setting. 89 Ill. Adm. Code § 679.50; Radaszewski, 383 F.3d at 602. In other words, the SCM functions as a cap: the cost of care for a disabled adult in a nursing facility is the maximum benefit that individual can expect to receive for his or her home care. To calculate the SCM for individuals who are eligible for care in an institution but choose to receive home or community-based care, Illinois uses a Determination of Need ("DON") test, which measures what is referred to as an individual's "imminent risk of institutionalization." 89 Ill. Adm. Code §§ 679.10(b), 676.30(d). Thus, the DON test assesses an individual's physical eligibility for the Home Services Program, including the extent of his or her impairment and need for external care. 89 Ill. Adm. Code § 679.10. The DON assessment determines an individual's eligibility for placement in a hospital or nursing facility and/or for home services. Id. An individual's DON score is then found to correspond to an SCM. See 89 Ill. Admin. Code § 679.50(b) (setting forth SCMs for participants in HSP).
Grooms argues that the DON calculus is irrelevant to his claims, because--based on his dependence on a ventilator--he received an "exceptional care" rate in October 2005. (Def.'s 56.1 ¶ 52.) Indeed, Illinois regulations recognize that no SCM is sufficient to serve individuals who require what the state refers to as "exceptional medical care," so HFS sets an "exceptional care rate" for those individuals. 89 Ill. Adm. Code §§ 140.569(a), 679.50(f); Radaszewski, 383 F.3d at 603. Ventilator-dependent individuals receive exceptional care rates. The Illinois Medical Assistance Statute, which establishes a program for providing various types of medical assistance including Medicaid, defines exceptional medical care as "the level of medical care required by persons who are medically stable for discharge from a hospital but who require acute intensity hospital level care for physician, nurse and ancillary specialist services. . . ." 305 ILCS 5/5-1.1(i). Only skilled nursing facilities that meet certain state requirements-or exceptional care nursing facilities-may receive payments for providing exceptional care. 305 ILCS 5/5-5.8a(a). The exceptional care rate approximates the cost of providing exceptional medical care to an individual in an institution, and is calculated by identifying the daily exceptional care rate for the nearest approved exceptional care nursing facility to the individual's home and extrapolating a monthly exceptional care rate. 89 Ill. Adm. Code § 679.50(f); Radaszewski, 383 F.3d at 603 n.2. Nevertheless, as described below, even the exceptional care rate to which Grooms is entitled does not provide him with sufficient funding for the care he needs to remain in his home.
II. Grooms's PWD Waiver Benefits
Defendant admits that Grooms is disabled. (10/31/07 Trial Tr. 22:4-5, Ex. D to Pl.'s Resp.) Grooms was diagnosed with GSD Type II when he was twelve years old. (Compl. ¶ 1; 10/31/07 Trial Tr. 7:1-6.) This is a muscle disease, which progressively affects both skeletal muscle and the muscles involved in respiration. (Compl. ¶ 1.) Grooms's condition has also caused him to suffer from a variety of medical ailments, including cardiomyopathy, scoliosis, asthma, and osteoporosis. (10/31/07 Trial Tr. 7:1-6.) He is wholly dependent on a ventilator for his breathing. (Id.) In addition, Grooms is a quadriplegic who must rely on others for virtually all care and mobility. (Compl. ¶¶ 1-2.) Grooms has some use of his hands, and is able to drink from a straw, feed himself certain foods, and use a computer. (Id. ¶ 2.) Aside from this, he retains virtually no body functions. (Id.) His cognitive function, on the other hand, is unimpaired. (Id.)
Nor are the particulars of the Medicaid benefits Grooms has received disputed in this action. The parties agree that Grooms is eligible to receive Medicaid assistance (Def.'s 56.1 ¶ 1), and do not dispute that Medicaid provides funding for necessary institutional care including, if necessary, hospitalization. Grooms received skilled nursing care at home pursuant to the MFTDC program until his twenty-first birthday. (Compl. ¶ 26.) Grooms notes that during 2005, HFS paid approximately $16,000 for monthly medical services provided by a Registered Nurse and a Licensed Practical Nurse as well as approximately $1,000 per month for respite care, which is temporary, short-term care of an individual with a disability to provide families with a break from caregiving. (Id. ¶ 27.) Defendant's proffered expert--Todd D. Menenberg--echoed this, expressing his understanding that Grooms received through the MFTDC program nursing services costing $16,000 per month and respite care costing $1,000 per month. (Grooms v. Maram Expert Witness Report dated 3/19/07 ("Menenberg Rept."), Ex. D to Pl.'s 56.1.) Grooms also contends that his reimbursed medical expenses in the year before his twenty-first birthday totaled approximately $221,760. (Compl. ¶ 27.) Grooms's parents were responsible for the rest of his medical care, though the record does not reveal what this remaining medical care included. (Id.)
On January 21, 2005, Grooms; his mother; his nurse; his case manager from the University of Illinois Division of Specialized Care for Children, which administers the MFTDC program; and Susan Whitney (a counselor from the Department of Human Services' Division of Rehabilitation Services, which administers PWD waivers) met to discuss the Home Services Program and the services that would be available for Grooms once he aged out of the MFTDC program. (Def.'s 56.1 ¶ 47.) Generally, when an individual is approved to receive services at home, a "Service Plan" is developed for his or her Medicaid assistance. Whitney completed an Interim Service Plan which afforded Grooms total monthly service benefits of $150 for twenty hours per month of Personal Assistant ("PA") services. (Id. ¶ 48.) Then, on September 24, 2005, an Addendum Service Plan was developed for Grooms (presumably by Whitney in connection with Grooms's medical advisors); it provided 406.25 hours of LPN services for a total of $8,125 per month and fifty hours of PA services for a total of $392.50 per month. (Id. ¶ 51; Home Services Program Service Plan for David W. Grooms dated 9/24/05, DX 56.) This resulted in a total monthly payment of $8,517.50 for Grooms's home care. (Id.) On October 11, 2005--days after Grooms's twenty-first birthday--a "Second Addendum Home Services Program Service Plan" was developed for Grooms, providing 318 hours of Registered Nurse services for a total of $7,314 per month; 51.5 hours of Licensed Practical Nurse services for a total of $1,030 per month; and 36 hours of PA services for a total of $282.60 per month (Def.'s 56.1 ¶ 53; Home Services Program Service Plan for David W. Grooms dated 10/11/05, DX 57.) In sum, Grooms was deemed entitled to Medicaid assistance totaling $8,626.60 per month for nursing and personal assistance services. (Id.) In that same month, HFS calculated an"exceptional care rate" for Grooms, because he is a ventilator-assisted individual; that rate was an amount not to exceed $8,633.20. (Def.'s 56.1 ¶ 52; Home Services Program Exceptional Care Rate for Ventilator Assisted Individuals for David Grooms dated 10/05, DX 47.)
It is not apparent from the record whether this sum is in addition to or in place of the SCM calculated for Grooms. Then, on January 24, 2006, Whitney developed a Service Plan Reassessment for Grooms, which again afforded Grooms services identical to those provided by the October 2005 Service Plan. (Def.'s 56.1 ¶¶ 56-7.) It is undisputed that the benefits Grooms receives under the PWD waiver amount to less than half of what he received for home care under the MFTDC waiver program.
Despite this reduction in benefits, since his twenty-first birthday on October 8, 2005, Grooms has remained at his parents' home rather than in an institution. (Def.'s 56.1 ¶ 60.) His parents have personally cared for him around the clock, at considerable hardship. Due to their own worsening health and work demands, however, his parents are unable to continue making these extraordinary efforts. (Compl. ¶ 31.) Thus, Groom alleges, the reduction in funding for his care that results from the limitations in the state's PWD waiver will force him to enter an institution--a result he believes violates federal law. (Id. ¶ 36.) .
Grooms initiated this litigation on April 20, 2006, alleging that HFS's actions violate the ADA and the Rehabilitation Act because his forced institutionalization will unlawfully segregate him from the community. (Compl.) Following a period of discovery, a bench trial was scheduled to begin on October 31, 2007. (Docket Entry No. 148.) The parties' opening statements revealed that there are no disputes of fact concerning Groom's physical condition or his medical needs:
THE COURT: . . . .I thought I was going to be hearing evidence about Mr. Grooms' medical condition and why he could be perfectly well accommodated in a skilled nursing facility despite what the plaintiff characterizes as these grave needs for ventilator services and the like.
But the openings establish to my satisfaction that it's the defendant's position that we really don't look at that issue. We really -- under the statutes and the regulations, we are not discriminating against him. We are making the care available that the statutes and regulations call for. And this additional level of care is simply not available to the plaintiff under the relevant regulations.
. . . .[M]y understanding is the defendant believes even if the plaintiff can demonstrate that his medical needs are such that they cannot be accommodated in a skilled nursing facility, he still is not entitled to more money for home-based care.
MR. HUSTON: That is correct. You have to cap it at a nursing facility level of care under the persons with disabilities [waiver]. (10/31/07 Trial Tr. 53:17-54:16.) Thus, the court declined to hear testimony and, instead, ordered additional summary judgment briefing on the disputed legal issue.
Defendant moved for summary judgment on November 30, 2007. (Docket Entry No. 149.) Defendant's position on summary judgment is not that hospital-level care is unnecessary for Grooms but, rather, that HFS has no obligation to fund hospital-level care for Grooms under the PWD waiver. Citing Supreme Court and Seventh Circuit cases holding that failure to integrate can constitute discrimination in violation of the ADA and Rehabilitation Act, Plaintiff counters that HFS is indeed obliged to provide adequate funding for Grooms's home care so long as home care is appropriate, acceptable to Grooms and his family, and cost-neutral. Plaintiff did not move for summary judgment but, on March 6, 2008, requested a preliminary injunction requiring the state to provide funding for Grooms to receive a hospital-level of care in his home. (Docket Entry No. 181.) As explained below, the court concludes that Defendant is not entitled to judgment as a matter of law at this stage and, because Plaintiff is likely to succeed on the merits of his claims, directs the parties to appear in court to assess what preliminary relief should be afforded to Grooms.
I. Summary Judgment Legal ...