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IN THE UNITED STATES DISTRICT COURT
FOR THE NORTHERN DISTRICT OF ILLINOIS
EASTERN DIVISION
SEAN DAKOTA STOUT, individually and on behalf of a class, Plaintiff,
vs.
BARRY S. MARAM, in his official capacity as Director of the Illinois Department of Healthcare and Family Services, Defendant.
No. 09-4610
Judge: William J. Hibbler
Magistrate: Michael T. Mason
COMPLAINT FOR DECLARATORY AND INJUNCTIVE RELIEF
Now comes the Plaintiff, by and through his attorney, Robert H. Farley, Jr., Ltd., and files the following complaint against the Defendant as follows:
I. INTRODUCTION
1. The Plaintiff, Sean Dakota Stout (Sean), is a medically fragile disabled person who is on a ventilator and currently receives funding from the Defendant for 24 hours a day nursing level of care at his home at a cost of approximately $20,000 per month, so that he does not have to be institutionalized or hospitalized his entire life at a rate of approximately $55,000 per month.
Sean's funding from the Defendant comes from the State of Illinois "Medicaid Home and Community-Based Services (HCBS) Waiver for Children that are Medically Fragile, Technology Dependent" program. (MF/TD)2. Sean's enrollment in the MF/TD program is only available to persons under the age of 21 and Sean will turn 21 on September 18, 2009. When Sean or any disabled person turns 21 in the MF/TD program, the Defendant's policy and practice is to reduce the existing medical funding by approximately 50% based solely on the fact that the person is now 21. The reduction in funding is not due to a change in Sean's medical needs but on the fact that Sean's funding at age 21 comes from a different State program, which has significant caps on funding. The reduction in funding will either result in Sean becoming institutionalized (hospitalized) or if he remains in his family home without sufficient skilled nursing care, then he faces a strong possibility of imminent death.
3. Prior to the filing of this lawsuit by Sean, the Defendant has been successfully challenged by individual plaintiffs in every lawsuit over its practice and policy of reducing medical funding which results in a reduction of medical services when the disabled person turns 21 years of age. Despite the fact that the Defendant has not prevailed to provide reduce medical funding in 5 separate federal and state lawsuits brought by similarly situated persons like the Plaintiff who were turning 21 and aging out of the MF/TD program, the Defendant continues the same practice to date to reduce medical funding at age 21 as evidence by Sean's case. Accordingly, Sean brings this lawsuit, individually and on behalf of a class, seeking injunctive relief to prevent the Defendant from reducing the level of medical care currently provided to Sean and the putative class, which are necessary to prevent institutionalization (hospitalization), which is a more costly and a more restrictive setting than the current home placement.
4. This class action lawsuit is necessary in order to stop the Defendant from continuing to systematically violate the Americans with Disabilities Act and the Rehabilitation Act for persons aging out of the "MF/TD" program. (See prior successful litigation by plaintiffs against the State of Illinois over the "MF/TD" program where the State was required to continue to fund the same level of medical services which existed prior to the age of 21 years: Radaszewski v. Maram, 2008 U.S. Dist. LEXIS 24923 (N.D. Ill.)(March 26, 2008); Grooms v. Maram, 563 F.Supp.2d 840 (N.D.Ill. 2008); Jones v. Maram, 373 Ill.App.3d 184 (3rd Dist. 2007); Sidell v. Maram, 05 cv 1001 (C.D. Ill.)(January 14, 2009); and Fisher v. Maram, 06 C 4405 (N.D. Ill.)(January 8, 2009)).
II. JURISDICTION & VENUE
5. This is an action for declaratory and injunctive relieve to enforce the rights of the Plaintiff and the class he seeks to represent under the Americans with Disabilities Act, 42 U.S.C. Sec. 12132 and Section 504 of the Rehabilitation Act, 29 U.S.C. Sec. 794(a).
6. This Court has jurisdiction over Plaintiff's federal law claims pursuant to 28 U.S.C. Sections 1331 and 1343. Plaintiff's claim for declaratory and injunctive relief are authorized under 28 U.S.C. Sec. 2201-02 and 42 U.S.C. Sec. 1983.
7. Venue is proper in the Northern District of Illinois under 28 U.S.C. Sec. 1391(b).
III. PARTIES
8. The Plaintiff, Sean Dakota Stout (Sean) will be 21 years old on September 18, 2009, is medically fragile and he is on a ventilator 24 hours a day and currently receives funding from the Defendant for 24 hours a day nursing level of care at his home. Sean is wheelchair bound and is completely dependent on someone for all of his care as he is unable to move any part of his body from neck to toes. Sean has spinal muscular atrophy, neuromuscular scoliosis, chronic respiratory failure, status post tracheostomy and status post gastrostomy. Sean resides with his parents in Marion, Illinois.
9. The Defendant, Barry S. Maram, is the Director of the Illinois Department of Healthcare and Family Services (HFS) and is being sued in his official capacity.
IV. CLASS ACTION ALLEGATIONS
10. Plaintiff bring this action on behalf of himself and as a class action pursuant to Rule 23(b)(2) of the Federal Rules of Civil Procedure.
11. The Class consists of the following:
All persons who are enrolled or will be enrolled or were enrolled in the State of Illinois Medically Fragile, Technology
Dependent Medicaid Waiver Program and when they obtain the age of 21 years are subjected to reduce Medicaid funding
which reduces the medical level of care which they had been receiving prior to obtaining 21 years.
12. The Class is so numerous that joinder of all persons is impracticable. As of September 1, 2007, 457 children received services in the MF/TD program. In Jones v. Maram, 373 Ill.App.3d 184 (3rd Dist. 2007), Barbara Ginder from the State of Illinois stated in an affidavit "there were 34 active cases of 18 to 20-year-old individuals, 19 of whom were ventilator dependent" in the MFTDC program. Id., at 192. "Ginder stated these individuals are likely to transition from MF/TD to HSP [Home Services Program] (if they select) at age 21." Id. The class members have limited financial resources and are unlikely to institute individual actions.13. The claims of the class members raise common questions of law and fact.
These include:
(a) Whether the Defendant violated the ADA and Rehabilitation Act by reducing the level of funding for persons enrolled in the Illinois Medically Fragile, Technology Dependent Medicaid Waiver Program which resulted in a reduction of medical services.
(b) Whether the ADA and Rehabilitation Act permits the Defendant to reduce the level of funding which results in a reduction of medical services for disabled persons after the age of 21, even though there has been no change in their medical needs.
(c) Whether a fundamental alteration of the Illinois disability programs would occur if the Defendant provided funding to continue the same level of services for the Plaintiff and the putative class when they turn the age of 21 years;
(d) Whether compelling an increase in the "exceptional care rate" for persons exiting the MF/TD program into the Illinois Home Services Program is unreasonable under the ADA and Rehabilitation Act; and
(e) Whether the Illinois disability programs can reasonable accommodate a modification to their existing programs to allow the Plaintiff and putative class to continue to receive the same level of care in the community when they turn 21 years of age.
The common questions of fact and law predominate over questions affecting only individual class members.
14. The Plaintiff's claims is typical of the class members' claims.
15. The Plaintiff is an adequate representatives of the class because he suffers from deprivations identical to those of the class members and has been denied the same federal rights that he seeks to enforce on behalf of the other class members. The Plaintiff will fairly and adequately represent the interests of the other class members, many of whom are unable to pursue claims on their own behalf as the result of their disabilities. Plaintiff's interest in obtaining injunctive relief for the violations of constitutional rights and privileges are consistent with and not antagonistic to those of any person within the class. Plaintiff's counsel is qualified, experienced and able to conduct the proposed litigation.
16. A class action is superior to other available methods for the fair and efficient adjudication of the controversy in that:
(i) A multiplicity of suits with consequent burden on the courts and defendants should be avoided.
(ii) It would be virtually impossible for all class members to intervene as parties-plaintiffs in this action.
17. The Defendants have acted or refused to act on grounds applicable to the class, thereby making appropriate final injunctive and declaratory relief with respect to the class as a whole.
V. STATEMENT OF FACTS
A. Plaintiff Sean Dakota Stout
18. The Plaintiff, Sean Dakota Stout (Sean) will be 21 years old on September 18, 2009, is medically fragile and he is on a ventilator 24 hours a day and currently receives funding from the Defendant for 24 hours a day nursing level of care at his home. Sean is wheelchair bound and is completely dependent on someone for all of his care as he is unable to move any part of his body from neck to toes. Sean has spinal muscular atrophy, neuromuscular scoliosis, chronic respiratory failure, status post tracheostomy and status post gastrostomy.
19. Sean's current funding from the Defendant comes from the "Medicaid Home and Community-Based Services (HCBS) Waiver for Children that are Medically Fragile, Technology Dependent." (MF/TD). Sean receives funding from the Defendant for 24 hours a day nursing level of care at his home at a cost of approximately $20,000 per month, so that he does not have to be institutionalized or hospitalized his entire life at a rate of approximately $55,000 per month.
20. Sean's enrollment in the MF/TD program is only available to persons under the age of 21 and Sean will turn 21 on September 18, 2009. When Sean or any disabled person turns 21 in the MF/TD program, the Defendant's policy and practice is to reduce continuing medical funding by approximately 50% based solely on the fact that the person is now 21. The reduction in funding is not due to a change in Sean's medical needs but on the fact that Sean's funding at age 21 comes from a different State program, which has significant caps on funding. The reduction in funding will either result in Sean becoming institutionalized (hospitalized) or if he remains in his family home without skilled nursing care, then he faces a strong possibility of imminent death.
21. Sean has been informed by the Defendant that when he turns 21 years of age on September 18, 2009, he will be subjected to reduce funding at approximately 50% of his current rate and that Sean will be unable to maintain the same level of round the clock intensive nursing care which he needs. The State of Illinois has informed Sean and his parents that once Sean turns 21, he will only be entitled to receive an "exceptional care rate" of $11,483 per month in funding to address his medical needs if he wishes to remain living in the family home. The State is willing to provide an additional 27 hours per week of funding for skilled nursing services only during the times when Sean is going to college. This rate of $11,483 is completely inadequate to provide Sean the 24 hour nursing level of care in his home due to his medical condition and would likely result in his death for him to remain at home. Moreover this State policy of paying only an 'exceptional care rate' of $11,483 is in conflict with 5 recent Federal and State court cases, where the Defendant was not permitted to reduce funding when a person ages out of the MFTDC program. (See cases listed in paragraph 4 above)
22. If Sean was unable to receive 24 hour nursing level of care in his home, then he would be forced to be institutionalized and obtain medical care in a hospital setting at a rate of approximately $55,000 per month, which costs more than his current level of funding in the family home.
23. Sean is requesting injunctive relief to require the Defendant to provide funding for 24 hour nursing level of care (skilled nursing) in order that he may remain in the community and not be institutionalized or hospitalized for his entire life. The actions of the Defendant constitute unlawful discrimination under Title II of the Americans with Disabilities Act (ADA), 42 U.S.C. Sec. 12132, and Section 504 of the Rehabilitation Act, 29 U.S.C. Sec. 794(a).
24. Sean is an individual with a disability.
25. Sean is a recipient of Medical Assistance, commonly known as Medicaid.
B. The Federal/State Medical Assistance Program
26. Medical Assistance, commonly known as Medicaid, is a joint federal and stated funded program enacted to provide necessary medical assistance to needy aged or disabled persons and families with dependent children, whose income and resources are insufficient to meet the cost of care. 42 U.S.C. Sec. 1396. States choosing to participate in the Medicaid program must operate the program in conformity with federal statutory and regulatory requirements. 42 U.S.C. Sec. 1396a.
27. Each State participating in the Medicaid program must submit a Medicaid plan to the Secretary of Health and Human Services (HHS) for approval. 42 U.S.C. Sec. 1396.
28. Each State must designate a single state agency to administer and / or supervise the administration of the state's Medicaid plan. 42 U.S.C. Sec. 1396a(a)(5).
29. In Illinois, the Department of Healthcare and Family Services (HFS) is the single state agency responsible for administering the Medicaid program.
30. States have the option of covering persons needing home-and-community-based services, if these persons would otherwise require institutional care that would be paid for by Medicaid. 42 U.S.C. Sec. 1396n(c)(1). Under this waiver authority, the Secretary of HHS may grant waivers of specified requirements like service limitations that are otherwise applicable to the State's Medicaid plan. 42 U.S.C. Sec. 1396n(c)(3). Waiver programs must be cost-neutral in that the average cost of providing care for program participants in the home or community based setting must not exceed the estimated average cost of providing care in the institutional setting they would require. 42 U.S.C. Sec. 1396n(c)(2)(D); 42 C.F.R. Sec. 441.302(e).
31. Illinois has implemented a total of nine (9) federally approved home-and-community-based care waiver programs in its Medicaid program which were approved by the Secretary of Health & Human Services (HHS). Two of the nine waiver programs are as follows:
- Children that are Technology Dependent / Medically Fragile (MF/TD
- Persons with Disabilities (Home Services for Adults with Disabilities) (HSP)
C. Medically Fragile / Technology Dependent Program (MF/TD).
33. Under the waiver program for Medically Fragile, Technology Dependent Children, Illinois pays for home-based care for children under age 21 who have exceptional medical needs.
The Illinois Department of Healthcare and Family Services (HFS) administers this waiver program with participation of the University of Illinois' Division of Specialized Services for Children (DSCC) under an agreement with HFS.
34. The Illinois Medicaid Home and Community-Based Services ("HCBS") waiver program, which includes the MFTDC program, allows the State of Illinois to provide services to persons, like Sean, in an individual's home or community as long as those services prevent the individual from being institutionalized or hospitalized.
D. Persons with Disabilities (Home Services Program) (HSP)
35. Under the Home Services waiver program (HSP), Illinois funds services to enable disabled adults to remain in their homes or in a community setting. HFS administers the HSP program with the participation of the Division of Rehabilitative Services (DRS) of the Illinois Department of Human Services (DHS) through an agreement with HFS.
E. Sean's Current Medical Plan
36. Currently, HFS provides a medical plan for Sean that is medically necessary and a cost-effective alternative to care in the institutional setting that HFS determined Sean would otherwise require.
37. HFS has determined that Sean has a hospital need for care.
38. Through the MF/TD waiver program , HFS pays for skilled nursing care which Sean needs in his home.
39. HFS approved and pays for approximately $20,000.00 of monthly medical services provided by a registered nurse and a licensed practical nurse. This plan allows Sean to meet the costs for the salaries and benefits of the skilled nursing services that he requires. In addition to skilled nursing services, Sean receives approximately $1,000.00 per month of registered nursing services for respite care. Sean's mother and father provides the balance of Sean's care. Sean's mother is a registered nurse and has a full-time job outside the home. She is not compensated by the State when she addresses the medical needs of Sean as a registered nurse.
40. Sean's current level of services is based upon a determination made by DSCC, after a full evaluation of Sean, that he needed that level of care to avoid institutionalization (hospitilization). DSCC's concluded that Sean would require hospitilization at an annual cost that would far exceed the amount he was awarded.
41. As Sean approached his 21st birthday, DSCC staff discussed Sean's transition into the Office of Rehabilitation Services Home Care Services (HCS) program and "aging out" of the MF/TD waiver program.
42. In June, 2009, Sean was advised by the Home Services Program (HSP) operated by the Illinois Department of Human Services (DHS), that Sean was entitled to an "exceptional care rate" for his in home care at a rate of $11,483 per month plus the Office of Vocational Services would provide an additional 27 hours of nursing services when Sean is attending college. DHS further advised Sean that this rate was the "maximum" which could be offered.
43. The exceptional care rate for Sean's medical care set forth in the above paragraph is not sufficient to meet the costs of the nursing services which Sean requires.
44. The proposed reduction in funding / services by the Defendant is based solely on the fact that Sean will reach 21 years of age on September 18, 2009. The reduction in funding / services is not due to a change in Sean's medical needs, which in fact have remained unchanged.
45. Sean's strong bond to his family is threatened by isolation in an institution.
46. Sean's physicians have determined that Sean can be cared for at home safely and appropriately.
47. Under the laws governing the Home Services Program, HFS has discretion to set funding for services for persons whose needs cannot be met by otherwise applicable caps, provided that the program is cost neutral.
48. With no modifications in its regulations, and little modifications in its practices, HFS could continue to fund the level of nursing care that Sean requires in order to remain at home at a cost that is less than would be required to serve him in an appropriate institutional setting for the care he needs.
49. If allowed to go into effect, the proposed reduction in funding for Sean's medical care will ultimately force Sean into an institutional setting (hospital), isolating him from home and community, or alternatively, will likely result in his imminent death if he remains in his home.
50. The Defendant has informed Plaintiff that the reduced funding will take effect on Sean's birthday, September 18, 2009.
VI. CAUSES Of ACTION
COUNT I
VIOLATION OF AMERICAN WITH DISABILITIES ACT (ADA) AND 42 U.S.C SECTION 1983
51. The Plaintiff repeats and incorporates by reference as though fully set forth here the facts contained in paragraphs 1 through 50 above.
52. Title II of the American with Disabilities Act (ADA) provides that no qualified person with a disability shall be subjected to discrimination by a public entity. 42 U.S.C. Sec. 42 U.S.C. Sec. 12132. A public entitle shall administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities. 28 C.F.R. Sec. 35.130(d) (1998). Policies and practices that have the effects of unjustifiably segregating persons with disabilities in institutions constitute prohibited discrimination under the ADA.
53. The Plaintiff is a qualified individuals with disabilities within the meaning of Title II of the ADA.
54. The Illinois Department of Healthcare and Family Services of which Defendant Maram is Director is a "public entity" within the meaning of Title II of the ADA.
55. The actions by HFS constitute unlawful discrimination under 42 U.S.C. Sec. 12132 and violate the integration mandate of the regulations implementing this statutory prohibitions. 28 C.F.R. Sec. 35.130(d).
56. The Defendant's planned reduced funding of the home nursing and other services which Sean needs in order to avoid institutionalization, violates Title II of the ADA, 42 U.S.C. Sec. 12132 and its implementing regulation. 28 C.F.R. Sec. 35.130(d).
57. The Plaintiff and the putative class will suffer irreparable injury if the Defendant is not enjoined from reducing the funding when a person turns the age of 21 years, as the reduced level of funding will force the Plaintiff and the putative class into an institution, where they will not receive the most integrated setting appropriate to their needs, or alternatively, the reduced level of funding and remaining at home may lead to their death or serious injury.
58. The Plaintiff and putative class have no adequate remedy at law.
59. The Plaintiff is indigent and unable to post bond.
COUNT II
VIOLATION OF REHABILITATION ACT AND 42 U.S.C SECTION 1983
60. The Plaintiff's repeat and incorporate by reference as though fully set forth here the facts contained in paragraphs 1 through 59 above.
61. The Rehabilitation Act, 29 U.S.C. Sec. 794, prohibits public entities and recipients of federal funds from discriminating against any individual by reason of disability. The implementing regulation for the statute requires that public and federally-funded entities provide programs and activities "in the most integrated setting appropriate to the needs of the qualified individual with a disability." 28 C.F.R. Section 41.51(d). Policies and practices that have the effects of unjustifiably segregating persons with disabilities in institutions constitute prohibited discrimination under the RA.
62. The Illinois Department of Healthcare and Family Services is a recipients of federal funds under the Rehabilitation Act..
63. The Plaintiff is a qualified individual with a disability under Section 504 of the Rehabilitation Act.
64. The actions by HFS constitute unlawful discrimination under 29 U.S.C. Sec. 794(a) and violate the integration mandate of the regulations implementing this statutory prohibition. 28 C.F.R. Sec. 41.51(d).
65. The Defendant's planned reduced funding of the home nursing and other services which Sean needs in order to avoid institutionalization, violates Section 504 of the Rehabilitation Act of 1973, 29 U.S.C. Sec. 794(a) and its implementing regulation. 28 C.F.R. Sec. 41.51(d).
66. The Plaintiff and the putative class will suffer irreparable injury if the Defendant is not enjoined from reducing refunding when they turn the age of 21 years, as the reduced level of funding will force the Plaintiff and the putative class into an institution, where they will not receive the most integrated setting appropriate to his needs, or alternatively, the reduced level of funding and remaining at home may lead to their death or serious injury.
67. The Plaintiff and putative class have no adequate remedy at law.
68. The Plaintiff is indigent and unable to post bond.
VII. REQUEST FOR RELIEF
WHEREFORE, the Plaintiff respectfully request that this Court:
(a) Certify this case to proceed as a class action.
(b) Issue a Declaratory Judgment in favor of the Plaintiff and the Class and that the Defendant's reduction in funding which results in a reduction of medical services when aging out of the State of Illinois Medically Fragile, Technology Dependent program (MF/TD) violates the Americans with Disabilities Act, 42 U.S.C. Sec. 12132 and Section 504 of the Rehabilitation Act, 29 U.S.C. Sec. 794(a) and their implementing regulations, 28 C.F.R. Sec. 35.130(d), 41.51(d).
(c) Issue Preliminary and Permanent Injunctive relief requiring the Defendant to restore the level of funding to maintain the existing medical services for the Plaintiff and putative class prior to aging out of the State of Illinois Medically Fragile, Technology Dependent program (MF/TD).
(d) Award Plaintiff and the Class the costs of this action, including reasonable attorneys fees, pursuant to 42 U.S.C. Section 12205; Section 504 of the Rehabilitation Act, and 42 U.S.C. Section 1988; and
(e) Award such other relief as the Court deems just and appropriate.
Respectfully submitted,
/s/ Robert H. Farley, Jr.
Attorney for Plaintiff
Robert H. Farley, Jr.
Robert H. Farley, Jr., Ltd.
1155 S. Washington Street
Naperville, IL 60540
Phone: 630-369-0103
Fax: 630-369-0191
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