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BRIDGES TO BETTER ADVOCACY OCTOBER 22, 2009 AUSTIN, TEXAS
KAREN I. WARD
SENIOR COUNSEL , EQUIP FOR EQUALITY STEVE ELLIOT S ENIOR ATTORNEY , ADVOCACY INC . GARTH CORBETT S ENIOR ATTORNEY , ADVOCACY INC .
CHALLENGING MEDICAID HOME SERVICES BENEFIT REDUCTIONS USING THE ADA I. OLMSTEAD v. L.C. AND THE “INTEGRATION MANDATE” The basis for challenging Medicaid reductions and service limitations under the ADA is what has become known as the “integration mandate” of Title II of the ADA, as interpreted by the Supreme Court in Olmstead v. L.C., 527 U.S. 581 (1999). Title II prohibits people with disabilities from being “excluded from participation in or . . . denied the benefits of the services, programs, or activities of a public entity, or subjected to discrimination by any such entity,” 42. U.S.C. S.12132. Regulations promulgated by the Attorney General further define this requirement. The integration regulation requires states to administer services “in the most integrated setting appropriate to the needs of the qualified individuals with disabilities.” 28 C.F.R. S. 35.130(d). The most integrated setting is “a setting that enables individuals with disabilities to interact with non-disabled persons to the fullest extent possible.” 28 C.F. R. pt. 35, App. A., p. 450. The regulations further provide that a state “shall make reasonable modifications in policies, practices, or procedures when the modifications are necessary to avoid discrimination on the basis of disability, unless the [state] can demonstrate that making the modifications would fundamentally alter the nature of the services, program, or activity.” The Supreme Court in Olmstead concluded that, based on these principles, the unnecessary segregation of persons with disabilities in institutions in order to receive services is a violation of the ADA. Where a reduction or limitation in services in a program subject to Title II can be shown to place the recipient at imminent risk of institutionalization, an Olmstead claim is potentially viable. II. RADASZEWSKI v. MARAM, 383 F. 3d 599 (7th Cir. 2004) AND “AGING OUT” OF THE MEDICAID CHILDREN’S WAIVER A. Medicaid Waiver Programs Home services may be provided by the states, with a Medicaid match, through “waivers” approved by the federal Centers for Medicaid and Medicare (“CMS”), under Section 1915(c). Under Medicaid, states have considerable discretion in devising waivers, including the types of service they will offer and the group to which they will be offered, but they must comply with certain elements. The waivers are essentially contracts between the state, through its lead Medicaid agency, and CMS. These contracts include certain “assurances” including an assurance that the services in the community will not, on average, or individually, exceed the cost of services in the institution designated for comparable care (the cost-neutrality requirement) and assurance that services that are provided are only those that are “medically necessary.” Waivers are sought by submission of waiver applications, using CM Section 1915 (c) forms. These forms permit the applicant to designate the comparable institution or institutions that will be used for determining cost neutrality. The choices include “Hospital,” “Nursing facility,” and “ICF-MR.”
The “Children’s Waiver” Many states have adopted the medically fragile technology dependent waiver for children up to age 21. Pursuant to EPSDT, Congress has required that children through that age be kept at home with services that are medically necessary; the MFTD waiver (known informally as the Children’s Waiver) is the mechanism through which this has been done. The MFTD waiver utilizes both “nursing facility” and “hospital” as the comparable institution(s) for assessing cost neutrality, depending on individual circumstances, as determined by medical evaluation. Very medically complex young people have been provided as many as 24 hours of skilled nursing hours per day under this program. The children’s waiver expires on the recipient’s 21st birthday.
Transition To “Adult” Waivers Sometime in advance of the recipient's 21 st birthday, recipients are advised that their benefits will end under the MFTD waiver and are given information about transitioning to services under adult waivers. Services for adults are provided through various types of waivers. In Illinois, for example, there are eight waivers for home services, including the catchall Persons With Disabilities (“PWD”) waiver. Illinois has elected to lmit adult waiver services to those that can be i provided at a cost equal to or less than a nursing facility level of care. As a result, young adults who have been receiving “medically necessary” services at age 20, 11 months and 29 days based on a hospital comparison, find their services reduced by as much as two thirds on their 21st birthday.
The 2004 7th Circuit Radaszewski Decision Facts/decision below: As a result of brain cancer and a stroke, Eric Radaszewski required “round-the clock” medical care in order to survive. Under the MFTD waiver he was provided 16 hours of private duty nursing in his home, which the State concluded was both medically necessary and cost neutral based on comparison to a hospital level of care. (The remainder of his care provided by his mother and guardian). At age 21, he was no longer eligible for that waiver and was transitioned to the adult “PWD” waiver. That waiver capped benefits at a nursing facility level of care, which he alleged was insufficient to permit him to remain at home. His mother brought suit claiming that the failure to fund the care that he needed amounted to discrimination under the Rehabilitation Act and the ADA. The district court entered judgment on the pleadings, holding that in- home nursing care was not a service that Illinois provided to any adult individual and that Eric was not a “qualified” individual with a disability because his care needs exceeded what the waiver program permitted. Appellate decision: The 7th Circuit reversed and remanded for a trial, holding that under the Olmstead integration mandate, Eric would be entitled to receive the services he sought if he established that 1) home placement remained appropriate for him, 2) he and his family do not oppose home placement, and 3) home placement can be “reasonably accommodated” taking into account the resources available to the state and the needs of others with comparable disabilities. The
court rejected the “fundamental alteration” defense based on pleadings alone, and remanded for trial, noting that if the cost of placement in the appropriate institution (which would be a factual question) equaled or exceeded the cost of caring for him at home, “then it would be difficult to see how requiring the state to pay for at-home care would amount to an unreasonable, fundamental alternation of its programs and services.” III. RADASZEWSKI’S PROGENY A. Overview Since the 7th Circuit’s decision in Radaszewski, several cases have proceeded to judgments or settlements, new cases have been filed, and relief obtained. The rationales of these cases are generally the same: • The plaintiff has a proven medical need for nursing services at the levels provided prior to age 21; without such service the client would be at risk of institutionalization. The level of care needed cannot be met in a nursing facility and is fact a hospital level of care. The cost of hospital care would be higher than the care sought in the lawsuit. Given this cost neutrality, the State cannot sustain its burden of demonstrating a fundamental alternation, or undue hardship in accommodating the plaintiff by providing nursing care in the home in the levels needed.
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Illinois Cases • RADASZEWSKI v. MARAM, 01 C 9551 (N.D. Ill.) (Darrah, J.) Attorneys: Prairie Legal Services History/Status: Remanded from 7th Circuit for trial. Preliminary injunction continued. Bench Trial held. Result: Verdict and judgment for the plaintiff. Court entered injunction guaranteeing 16 hours of nursing services per day, plus respite, at the rate currently paid by the defendant in the area. Opinion: Plaintiff proved that he needed a hospital level of care, that a hospital level of care would not be more expensive than home care at the level he needed, and that defendant could reasonably accommodate his needs. Court rejected defense of fundamental alteration based on cost and program, holding that the program (Home Services Program) could be modified to permit hospital level of care as comparator, and that cost projections were unfounded. Entirely discredited the expert (Navigant Consulting) (used by the defendant to prove undue burden and cost).
Note: Defendant put on no evidence to refute the level of medical care needed by the plaintiff and no evidence that a nursing facility could provide the care he needed No appeal. • SIDELL v. MARAM, 05 CV 1001 (C.D. Ill.) (McDade, J.); Complaint filed: 1/03/05; Judgment: 2/24/09 Attorneys: Prairie Legal Services and Equip for Equality Facts : At the age of 15 Gretchen contracted meningococcal meningitis and suffered a brainstem stroke the next day. The stroke caused paralysis of her trunk and extremities (tretraplegia), including her breathing and swallowing muscles, damage to her vocal chords, facial muscles and tongue. She required a ventilator. She had no cognitive imp airment, graduated from college, was active with family and friends. She received 18-20 hours of private nursing services daily at home until age 21. The State Medicaid agency (HFS) moved her to adult waiver, and capped her services at nursing home exceptional care rate, resulting in reducing hours to 50 per week. History/Status : Suit filed in U.S. District Court C.D. Illinois (McDade, J.). Preliminary injunction entered. Defendant’s motion for summary judgment denied. Good language rejecting defendant’s assertion that Medicaid required nursing home level of care as CMS approved waiver. Bench trial held. State offered expert (Navigant Consulting) to show fundamental alteration. Also offered evidence in effort to show her needs could be met in nursing facility. Result: Verdict and Judgment for plaintiff. In lengthy opinion, court soundly rejected defendant’s expert on cost projections. Found that plaintiff proved she could not safely be served in nursing facility and state could reasonably accommodate her in the home at a cost less than hospital care. Lack of an available hospital who would serve her was not relevant. Rejected argument that state would be required to provide the same level of care to all adult waiver participants, holding that the Medicaid waiver could be modified. “Illinois may modify the adult waiver program to accommodate Gretchen’s needs and provide services in keeping with Olmstead and Radaszewski and the integration mandates in the [ADA] and the Rehabilitation Act.” No appeal. • FISHER v. MARAM, 06 CV 4405 (N.D. Ill.) Filed: 8/15 /06; Judgment entered 1/8/ 09 Attorneys: Equip for Equality Facts: Devora Fisher born with agenesis of corpus colossum; treatment and seizure at age 14 resulted in multiple disabilities and fragile medical status, including life threatening seizure disorder. Non- verbal, severely intellectually disabled. Until age 21, under MFTD, state provided 116 hours of nursing services per week, plus 336 hrs respite annually, at cost of $21,650 per month.
Balance of care by mother/guardian. Transition to adult care proposal: capped benefits at $7,101 per month. History/Status : Suit filed within 10 days prior to 21 st birthday. Contested TRO entered, continued by consent until judgment. TRO preserved dollar amount per month through judgment. Massive discovery ensued, and trial date set. Cross motions for summary judgment denied with opinion. Result/Relief: Settled with agreed permanent injunction entered by the Court, providing for 116 hrs per week and 36 hrs per year respite at $42/36 per hour plus attorneys fees and costs. No appeal Interesting Post-judgment development: Fisher subsequently needed more nursing hours due to health problem of her mother. State refused, claiming she was not in the home service program at all, as she was ineligible due to her request for private duty nursing. State asserted that hours, and payments, were being provided “only” as a result of the injunction, and not the program (which gave rise to the litigation), so she could not be considered for additional care. Administrative appeal of that decision pending. • GROOMS v. MARAM, 06 CV 2211 (N.D. Ill): Filed: 4/20/06; Judgment: 6/13/08 Attorneys: Equip for Equality Facts: David Grooms diagnosed with type II Glycogen Storage Disease, a degenerative neuromuscular disease. Normal cognitive ability, quadriplegia, ventilator dependent, variety of other ailments. Highly fragile breathing. Under MFTD received 116 hours per week, plus 336 annually of respite, family provided remainder, at a cost to the state of $17,000+. At age 21, enrolled in Home Services Program and capped his benefits to $8,633. History/Status. Suit brought in federal court. Motions for summary judgment denied. Eventually, preliminary injunction was entered, restoring bene fits to pre-age 21 levels. State stipulated they had no additional evidence, so permanent injunction was issued. Result/relief: Parties disputed the wording of the permanent injunction, and plaintiff prevailed. Concern was that current State rates appeared to be lower than pre-21 payments, and future increases could preclude adequate care. Court agreed, and the Order provided that services were to be provided “ at rates sufficient to assure consistent competent skilled nursing services for the approved ho urs.” Attorneys’ fees awarded (substantial fees paid). • JONES v. MARAM (State Court Action) Attorneys: Equip for Equality Facts. Michael Jones diagnosis: since age 7 with C-1,C-2 spinal cord injury with complete quadriplegia, paralysis below the neck, permanently
compressed spinal cord and completely ventilator dependent, gastronomy tube and tracheotomy. Highly fragile for all care needs. Normal-High cognitive ability. Attending college. Under the MFTD received 136 hours nurse services per week, plus 336 annual respite hours; family provided remainder, at a cost to the state of $17,000 per month. MFTD comparative institution costs were $49,500 per month in 2004. History/Status. Suit in state court in mandamus and for injunctive relief after a state Medicaid agency issued an inadequate administrative decision. Amended complaints filed under the ADA and Rehab Act for declaratory relief and permanent injunction. The trial court granted two preliminary injunctions while case was pending before a state administrative agency and while defendants’ appeal of the trial court’s injunctions to the Illinois Appellate Court was pending. Trial court granted a third extension of the injunction after the appellate court ruled while discovery continued. Appeal: Illinois Appellate Court issued a detailed opinion affirming the trial court’s decision to issue the injunction to continue the MFTD waiver benefits after the age of 21 until the case reached a final conclusion. See, Jones v. Illinois Department of Public Aid, 373 Ill.App.3d 184, 867 N.E.2d 563 (2007). Result/relief: Defendant field a motion to stay the proceedings less than a month from the trial date in 2007, just after the trial in Radaszewski v. Maram ended and before the court’s decision. After the Radaszewski opinion was entered in 2008, defendant agreed to permanent injunction. Parties disputed the wording of the permanent injunction, but the court refused to include the expansive language requested by plaintiff that would assure sufficient nurse rates in the future. Court maintains jurisdiction over the case, and the MFTD level of nurse and respite services are ordered to continue indefinitely. • STEGEMEYER v. MARAM, 09 CV 2201 (C.D. Ill.); Complaint filed: 8/20/09 Attorneys: Equip for Equality Facts: Andy Stegemeyer has multiple disabilities requiring constant skilled care. He has diagnoses of mitochondria myopathy, chronic respiratory failure, mental retardation, muscle weakness, global hypotonia, tracheostomy, complex seizure disorder, severe scoliosis, and gastric reflux disease. He is ventilator-dependent, non-verbal, although has some receptive language. Prior to his 21st birthday on August 30, 2009, he received 114 hours of skilled nursing services weekly, plus 336 in respite services through MFTD, fo r a total cost of approximately $17,619 per month. State employees contacted his parents before his birthday and, despite the several other final injunctions and decisions that had been issued in federal court in Illinois, proposed a plan that could not exceed the cost of nursing facility, with a cap of $8,400 per month. History/Status: Equip for Equality filed suit in federal court within 10 days prior to Andy’s 21st birthday, and also filed a motion for TRO with supporting
evidence. The State did not oppose the TRO, and has consented to a TRO, preserving pre-age-21 benefit levels until judgment. The Complaint includes a claim for declaratory judgment that the state's refusal to modify its application for renewal of the waiver to include a hospital leve l of care for cost-neutrality (effective date October 1, 2009) constitutes a violation of the ADA as it assures discrimination against persons with severe disabilities needing a level of care high than a nursing facility. No Answer has yet been filed, but the case is proceeding. C. Texas Cases • AMAL ISSA V. ADELAIDE HORN, ET AL., Civil Action 4:07-CV-774 (S.D. Tex); Complaint Filed: March 6, 2007 Attorneys: Advocacy, Inc. Facts: Amal Issa is a medically fragile woman who when she was under the age of 21 qualified for, among other services, 24 hours a day of private-duty nursing care through the Texas Health Steps Comprehensive Care Program (CCP). CCP provides all medically necessary services to Medicaid-eligible children under 21-years of age. Amal’s services included private-duty nursing and durable medical equipment. However, on turning 21, Amal’s CCP services were scheduled to end. The Texas Department of Aging and Disability Services (DADS) informed Amal that her ability to remain at home depended upon her being eligible for a Medicaid waiver program. Unfortunately, the particular Medicaid waiver program Amal qualified for – the Home and Community- Based Services (HCS) waiver – did not provide enough funding to meet her nursing care needs – even though her medical needs had not changed. Based on the HCS waiver’s cost cap or limit, Amal only qualified for approximately five hours per day of private duty nursing care. Accordingly, DADS’ only recommendation was to move Amal to either a state school for persons with mental retardation or a nursing facility. Neither placement would provide the around-the-clock nursing care she was receiving at home. History/Status: A TRO and Preliminary Injunction were filed on Amal’s behalf against DADS and the Texas Health and Human Services Commission (HHSC) in the United States District Court for the Southern District of Texas in Houston. Result/Relief: The TRO was granted and after several mutually agreed upon extensions, Amal and Texas Medicaid agreed to a settlement. Amal now receives private-duty nursing services 24 hours a day. • KNOWLES V. ADELAIDE HORN, ET AL., Civil Action No. 3:08-CV-1492K (N.D. Tex.); Complaint Filed: August 25, 2008 Attorneys: Garth Corbett and Elise Mitchell for Advocacy, Inc., and Mark Whitburn of Gibson, Dunn & Crutcher LLP
Facts: Ryan Knowles is a multiply disabled, medically fragile young man who received private duty nursing services 24 hours per day through the Comprehensive Care Program (CCP). Prior to turning 21, Ryan was approved for Home and Community-based (HCS) waiver program services. Unfortunately, the HCS waiver budget would only pay for approximately six hours a day of private-duty nursing services. While DADS never contended Ryan’s medical needs are not being appropriately provided for at home, it nevertheless recommended an institutional setting at either a state school for persons with mental retardation or a nursing home. Furthermore, DADS acknowledges that neither institutional setting will be able to provide the oneto-one supervision Ryan currently receives at home. History/Status: In August, 2008, a request for a Temporary Restraining Order and Preliminary Injunction was filed in federal district court in Dallas. Subsequent to granting both the TRO and a preliminary injunction, the parties agreed to file cross motions for summary judgment which were due on October 11, 2009. • TOBY SIMMONS V. ADELAIDE HORN, ET AL., Civil Action No. W-08CA-208, (W.D. Tex); Complaint Filed: July 25, 2008 Attorneys: Advocacy, Inc. Facts: Toby Simmons, a medically fragile foster child, received 150 hours a week of skilled nursing services primarily through Texas’ Comprehensive Care Program (CCP) until his 21st birthday. Because Toby was no longer eligible for CCP services, his foster mother attempted to transition him to the Community-Based Alternative (CBA) waiver program. However, Toby’s need for essentially around-the-clock private-duty nursing care far exceeded his CBA budget. As a result, DADS claimed Toby’s needs could be met in a state school for persons with mental retardation or a nursing facility. Neither institutional placement would provide the level of nursing care Toby was receiving at home. History/Status: A motion for Temporary Restraining Order and request for preliminary injunction was filed in federal district court in Waco, Texas. Result/Relief: Toby’s TRO was granted but his preliminary injunction was subsequently denied. Toby was then moved from his home to a nursing facility, where within 24 hours of being transferred, he died.. IV. BLUEPRINT FOR AGING-OUT LAWSUIT A. Getting Ready a. Have family retain state approval records for pre-21 levels of care. These include records showing cost-neutrality, and the medical necessity approval. Establish relationship with well- regarded doctor who supports home care and level of services required.
Prepare Medical case: Declarations from nurses as to the exact care provided and why necessary; Doctors’ letters (going back several years if you can) and then Declarations, showing complexity of diagnoses, medical fragility, importance of nursing care. Prepare comparison case re level of care: Get information regarding nursing home staffing levels. If possible, have physician indicate in writing that client would not be safe in nursing home, and why. Prepare cost case. Obtain, if possible data, regarding the cost of hospitalization. (State may have provided this with pre-21 approvals). Court may take judicial notice that rates have not gone up, use physician to speak to general knowledge about hospital rates in the area. Gather information regarding client’s life in family, community.
Filing the lawsuit a. Time Suit to obtain immediate relief. File Complaint prior to 21st birthday if evidentiary support is available. (pre-21 care level may create rebuttal presumption sufficient for interim relief). Generally, file along with motion for TRO, within ten days of birthday. Elements of the Cause of Action i. ii. iii. iv. v. vi. vii. viii. ix. Plaintiff has a disability and is Medicaid eligible Plaintiff is medically fragile (details about condition) Plaintiff received nursing care in the community at levels found to be medically necessary by the state Plaintiff desires to be served in the community Plaintiff is appropriate for care in the community (shown by already in the community successfully) Plaintiff’s condition has not changed Plaintiff cannot safely be served in a nursing home If plaintiff does not receive the care she needs she will be at risk of institutionalization. The comparable institution would be a hospital (because nursing facility care not adequate and hospital care was comparator previously The cost of hospital care would be greater than care sought and previously provided in the home
Support for Temporary Restraining Order i. Use Declarations or Affidavits (or testimony) of nurses and doctors, as well as guardian or plaintiff, providing Medical support
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for history of condition, lack of change, need for care, and immediacy of risk of death, serious injury or illness or institutionalization (irreparable harm) ii. Use client/guardian or parent declaration or testimony, and official documents if available, to establish previous benefit levels, and previous medical necessity and cost- neutrality determination Assert that defendant will not be harmed/balance of hardships favors plaintiff (Defendant has paid this already and can continue to do so pending judgment) Public interest favors enforcement of the ADA
V. HELPFUL CASES IN SUPPORT OF AGING OUT LAW SUITS Note: The holdings in the following cases may support Olmstead remedies in other situations as well. A. FISHER v. OKLAHOMA HEALTH CARE AUTHORITY, 335 F.3d 1175 (10th Cir. 2003), involved Oklahoma’s decision to stop providing unlimited prescriptions to participants in community-based Medicaid program. Accordingly, the participants challenged this limitation contending the State’s action placed them at risk of being prematurely institutionalized in nursing facilities violating Olmstead’s integration mandate. The appeals court concluded that Olmstead may obligate the state to increase expenditures in order to comply with both the ADA and Rehabilitation Act’s integration mandate. B. CRABTREE v. GOETZ, 2008 WL 5330506 (M.D., Tenn. Dec. 2008), involved cuts in home health care services that would result in eligible recipients who are receiving services at home being moved into nursing facilities. Court determined that the isolation and deleterious effects the Supreme Court described in Olmstead were present in this case. The court listed these effects as, the “loss of individual lives, community activities and separation from their communities and loved ones.” Id. at * 25. Also, the court stated (citing to Olmstead) that under the ADA the treating physician’s opinion should be given the “greatest deference.” Id. (citing to Olmstead, 527 U.S. at 610 (Kennedy, J., concurring)). C. BRANTLEY v. MAXWELL-JOLLY, 2009 WL 2941519 (N.D.Cal., Sept. 2009), involved cuts by the State in its Medi-Cal Adult Day Health Care program (ADHC). Court found that the proposed cuts in ADHC services violates Olmstead’s integration mandate. The court held that the ADA’s integration mandate recognizes the heightened risk of being institutionalized as sufficient to support an ADA violation. D. TOWNSEND v. QUASIM, 328 F.3d. 511 (9th Cir. 2003), involved Washington state’s decision to terminate Medicaid waiver program services when recipients’ income exceed three-hundred percent of the Social Security Income benefit rate. Although still Medicaid eligible, the State was requiring these individuals to move to nursing facilities in order to receive medically necessary support services. The court found that the denial of community-based long term care for those whose income - 11 -
exceeded three- hundred percent violated Olmstead’s integration mandate. As a result, the ADA regulations required the State to reasonably modify its policies related to income in order to avoid discriminating on the basis of disability. E. FREDERICK L. v. DEPARTMENT OF PUBLIC WELFARE OF COMM. OF PENNSYLVANIA, 364 F.3d 487 (3d Cir 2003), involved a challenge to the State’s institutionalization of persons with mental illness in a state hospital. The appeals court found that in terms of Olmstead’s integration mandate there are several factors to consider. As an initial matter, the State cannot say as a matter of fact that compliance would be too costly or otherwise fundamentally alter its noncomplying programs. Rather, the State must look at a variety of factors including its ability to continue to meet the needs of other institutionalized persons with mental illness for whom, the court said, a community placement is not appropriate. In addition, the court should look to see whether there is a waiting list and whether there is a comprehensive plan to move eligible individuals into the community. F. PENN. PROT. & ADVOCACY, INC. v. PENN. DEP’T OF PUBLIC WELFARE, 402 F.3d 374 (3d Cir. 2005), involved geriatric individuals residing at a state mental health facility. The State did not include geriatric individuals with mental illness in its integrated residential treatment programs. The appeals court held that in light of Olmstead, the State cannot justify its failure to provide enough community-based treatment programs by simply claiming that compliance would be too costly or would otherwise fundamentally alter non complying programs. G. DISABILITY ADVOCATES, INC. (“DAI”) v. PATTERSON, 2009 WL 2872833 (Sept. 2009), involved persons with mental illness who were residing in and receiving services in large congregate adult homes instead of in smaller individualized apartment placements. DIA, the P&A for New York, brought suit on behalf of these residents, who were its constituents. After motions for summary judgment were denied, a bench trial was held. The court found that, contrary to Olmstead’s integration mandate, (1) the residents were not receiving services in the most integrated setting appropriate to their needs; specifically a setting that enables individuals to interact with non disabled persons to the fullest possible extent; (2) the residents were qualified for community-based supported housing; and (3) DAI’s requested relief would not fundamentally alter state's mental health programs and services.
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