UNITED STATES DISTRICT COURT
DISTRICT OF CONNECTICUT
Arc/CONNECTICUT, officially known as :
Association for Retarded Citizens of :
Connecticut, Inc, on behalf of its members; :
Stephen KUZIEL, by his parents and next friends, :
Barbara and Stephen Kuziel; Kevin ULSH, by his :
Parents and next friends, Molly and Stanley Ulsh; : Civil Action No.
Stacey REICHENBACH, by her father and next : 3:01 CV 1871 (JBA)
Friend, Steven Reichenbach; Lucien GRECA, by :
His mother and next friend, Rose Greca; Ryan :
O’KANE, by his mother and next friend, Carolyn :
O’Kane; Matthew VIGORITO, by his parents and :
Next friends, Linda and Alfred Vigorito; Sara :
AUSTIN-SMALL, by her parents and next friends, :
Linda and Peter Austin-Small; Paula SAGE, by her :
Parents and next friends, Pat and Henry Sage; :
Jacob PRATT, by his mother and next friend, Chris :
Pratt; Mary WEGLOWSKI; Linda O'NEILL; :
Heather BOUFFARD, by her mother and guardian, :
Pauline Bouffard; Sean BOUFFARD, by his mother :
and guardian, Pauline Bouffard; John :
BRODERICK, by his mother and guardian, Julie :
Broderick; Jessica CONNOLLY, by her mother :
and guardian, Barbara Connolly; Marcus :
DAMIANO, by his mother and guardian, Annette :
Damiano; Carmella DePANFILIS, by her niece and :
Next friend, Mary Anne Running; Erin HART, by :
Her mother and guardian, Jan Hart; Robert Janelle :
III, by his mother and guardian, Marie Janelle; Greg :
KNOWLES, by his mother and next friend, Judy :
Knowles; Kathryn MERCHANT, by her father and :
Guardian, Donald E. Merchant; Sarah MILLER, by :
Her mother and guardian, Karen Miller; Justin :
SEAVER, by his parents and guardians, David and :
Cynthia Seaver; Alicia STEINFELD, by her mother :
And guardian, Arlene Steinfeld; Connie :
SULLIVAN, by her mother and guardian, Rita :
Sullivan; and Wendy SULLIVAN, by her mother :
and guardian, Rita Sullivan :
Plaintiffs, :
:
vs. :
:
Peter H. O’MEARA, in his official capacity as :
Commissioner of the Department of Mental :
Retardation of the State of Connecticut; and :
Patricia A. WILSON-COKER, in her official :
capacity as Commissioner of the Department of :
Social Services of the State of Connecticut; :
:
Defendants. : February 6, 2003
:
SECOND AMENDED COMPLAINT
I. Introduction
1. Plaintiffs bring this action for declaratory and injunctive relief to declare the rights of plaintiffs and to remedy defendants’ violations of the Medicaid Act, 42 U.S.C. §§ 1396 et. seq. and its implementing regulations; the Americans with Disabilities Act, 42 U.S.C. §§ 12101 et. seq. and its implementing regulations; and the Due Process Clause of the Fourteenth Amendment to the United States Constitution.
2. Defendants have violated the rights of plaintiffs and members of the plaintiff class, who are in need of residential placement, training, treatment, day services, various therapies and/or other Medicaid services in an intermediate care level facility for the mentally retarded (ICF/MR) or equivalent Home and Community Based Waiver Services, by refusing to allow them to apply and/or discouraging them from applying for funding under the Home and Community Based Waiver Program for persons with mental retardation (HCBW #CT 0153.90.R1 – hereinafter “HCBW”) to pay for services they need unless the Connecticut Department of Mental Retardation (“DMR”) has previously arranged to pay for those services with state funding. Defendants have implemented the HCBW Program such that it is available only to obtain federal reimbursement for services defendant DMR already provides and not so as to enable individuals with retardation to obtain services they need but do not receive. Individuals who need services are therefore placed on a DMR Residential Waiting List for as long as a decade until DMR funding becomes available.
3. Defendants have violated plaintiffs’ right to services of adequate amount, duration and scope by limiting funding for persons accepted to the HCBW Program to the level necessary to pay for services individuals are already receiving. Therefore, individuals receiving only day services under the HCBW are not permitted to apply for HCBW funding for residential support services until a slot in an existing group home or other DMR-funded community residential setting becomes available.
4. Defendants have violated plaintiffs’ right to receive services with reasonable promptness by refusing to acknowledge plaintiffs’ unmet needs, be refusing to state those needs in individual plans of care, and by failing to address those needs with reasonable promptness.
5. Further, defendants have violated the rights of class members by not affording them notice and a fair hearing when they are denied the opportunity to apply for HCBW services or are provided services that are unduly limited in amount, duration and scope.
6. Finally, defendants have violated plaintiffs’ rights by not informing them of any feasible HCBW alternatives to ICF/MR services and are not given the choice of either institutional or home and community based services. 42 C.F.R. § 441.302(d)(1) – (2); see also 42 U.S.C. § 1396n(c)(2)(C).
7. Plaintiffs seek to remedy the pervasive, systematic, and continuing failure of defendants to inform them of their rights under the HCBW Program, to provide them with services in adequate amount, duration and scope in a reasonably prompt manner and to provide them with notice and a hearing when adverse action is taken by defendants as required by the Medicaid Act. Plaintiffs also seek to remedy defendants’ failure to provide appropriate services in the most integrated setting and to provide benefits that afford them and equal opportunity to obtain the same result, gain the same benefit, or reach the same result as that provided others.
II. Jurisdiction and Venue
8. This Court has jurisdiction to decide plaintiffs’ claims pursuant to 28 U.S.C. §§ 1331, 1343 (a)(3), and 1343 (a)(4).
9. Plaintiffs’ claims are authorized by 42 U.S.C. § 1396 et. seq., 42 U.S.C. § 12132 and 42 U.S.C. §§ 1983 and 1988. Declaratory relief is authorized under 28 U.S.C. §§2201 and 2202.
10. Venue in this District is proper under 28 U.S.C. § 1391 (b).
III. Parties
Plaintiffs
Arc/Connecticut
11. Arc/Connecticut (the “Organizational Plaintiff”) is a statewide not-for-profit advocacy organization made up of individuals with disabilities and their families as well as local ARC organizations providing direct service to individuals with disabilities. It was founded in 1951 and incorporated as a nonstock corporation in Connecticut. Arc/Connecticut is a not-for-profit corporation exempt from federal taxation pursuant to § 501 (c)(3) of the Internal Revenue Code, 26 U.S.C. § 501 (c)(3). It has 2,700 individual members and 24 chapters throughout the State of Connecticut. Arc/Connecticut’s mission is to protect the rights of people with mental retardation and related developmental disabilities and to promote opportunities for their full inclusion in the life of their communities. Among other activities, Arc/Connecticut advocates for the rights of persons with disabilities and their families for appropriate aids and services in the areas of employment, education, housing, and transportation in the least restrictive setting reasonably practicable. Arc/Connecticut has a substantial lobbying program related to the Connecticut legislature. For the past decade, the top item on Arc/Connecticut’s agenda has been adequate appropriations so that the Department of Mental Retardation can serve people on the DMR Residential Waiting List. Among the activities of Arc/Connecticut relating to securing funding for the Waiver are:
a. Negotiated an agreement with DMR in 1984 calling for three people living at home to be placed for every three placed from institutional settings;
b. Formed the “At-Home Coalition” in late 1991 to organize and assist parents of individuals on the DMR Residential Waiting List in educating their legislators on the issue;
c. Testified at every one of the annual public hearings on the DMR budget scheduled by the Legislature’s Appropriations Committees, as well as at numerous other public hearings, urging support for funding to reduce or eliminate the DMR Residential Waiting List;
d. Initiated and conducted a Waiting List Campaign in 1998, beginning with a conference in October 1998.
e. Participated in the DMR-sponsored Waiting List Focus Team from the Spring of 1999 to the release of the report in May 2000. Five of the 32 focus team members were ARC professionals or parents.
f. Actively participated in the marketing campaign following release of the Focus Team report aimed at educating government officials on the Waiting List issue.
g. Worked with the media to educate the public on funding the DMR Residential Waiting List.
Arc/Connecticut has numerous members who are seeking HCBW-based services but have been placed on a waiting list for a prolonged period of time. ARC Connecticut brings this case to enforce the right of its members under 42 U.S.C. § 1396 et. seq. and under 42 U.S.C. § 12101 et. seq.
12. Arc/Connecticut brings this lawsuit on behalf of its members who have been denied the opportunity to apply for waiver services, those who have been accepted into the HCBW Program but have been provided services that do not address their individual needs, those who have been denied the opportunity to access appropriate services most integrated to their individual needs and those who have not been afforded notice and a hearing to challenge adverse actions under the Home and Community Based Service Program.
Stephen Kuziel
13. Plaintiff Stephen Kuziel is a 32 year old (date of birth is November 9, 1970) client of DMR who has been diagnosed with tuberous sclerosis, insulin dependent diabetes, mental retardation and a seizure disorder. He lives at home with his 71 year old father, Stephen Kuziel, and 59 year old mother, Barbara Kuziel, in Branford, Connecticut. Through his parents, Stephen Kuziel applied to defendant DMR for supported living services in 1991 and was placed on the DMR Residential Waiting List. Since that time, he had received no residential services from defendant DMR. Stephen Kuziel requires an independent living situation in which staff is present twenty-four hours a day, seven days a week to monitor his seizure activity, to test his blood insulin levels three times a day, and to oversee his diet and exercise. Stephen Kuziel’s mother faces health problems of her own and his father is retired.
14. Stephen has been on the DMR Residential Waiting List for over five years. Mrs. Kuziel was asked to sign a Home and Community Based Services Waiver form in August 1999. It is not clear to the family, however, whether Stephen is a member of the HCBW program or not. Moreover, the family has not been afforded the opportunity to participate in the development of an appropriate individual plan of care for Stephen. Since 1999 DMR has never advised the family that HCBW funding may be allocated to fund a community residential support services nor provided notice or a hearing so that the DMR determination that residential funding would not be provided could be challenged.
15. In October of 2001, shortly after this lawsuit was filed, defendants advised Mrs. Kuziel that approximately $40,000 in self-determination money would be made available to place Stephen in a community setting. Stephen has remained at home with in home supports and on the DMR Residential Waiting List, however, this amount is insufficient to meet Stephen’s needs. In February 2003 the family concluded it could no longer tolerate having staffing in the home part time (25 hours per week) and developed a plan with DMR to place Stephen in an apartment approximately three days per week. Under this revised plan Stephen will have to live at home four days per week with no support due to insufficient funding. This revised plan, much like the previous plan, is unacceptable and contrary to Stephen’s interests. The family has not been advised that they have a right to a hearing to challenge DMR’s failure to properly document Stephen’s needs in his Individual Service Plan and/or to provide the residential supports he needs.
Kevin Ulsh
16. Plaintiff Kevin Ulsh lives with his parents and guardians Molly and Stanley Ulsh in Madison, Connecticut. Kevin Ulsh is a 42 year old (date of birth is June 19, 1960) client of DMR who has been diagnosed with a rare form of epilepsy and with brain damage of unknown origin. He is verbal, but his reading and writing abilities are limited. His parents are both in their late 60’s and his father suffered a heart attack a year ago. Through his parents, Kevin Ulsh applied to defendant DMR for supported living services in 1989 and was placed on the DMR Residential Waiting List. Since that time, he has received no residential support services from defendant DMR. He requires supported living with twenty-four hour a day, seven days a week staff supervision due to his seizures. Kevin Ulsh desires to live outside the family home and his parents want to transition him to an independent living situation, with appropriate aids and supports, while they remain healthy enough to assist with the transition. The Ulsh family has been provided with no respite services. As a result, Molly Ulsh, Kevin Ulsh’s mother and a woman of 69 years old, is on duty twenty-four hours a day, seven days a week. Kevin Ulsh is employed through a placement arranged by SARAH, Inc. and funded by DMR.
17. Kevin has been on the DMR Residential Waiting List for approximately twelve years. Despite this fact defendants have never advised the family of the availability of the Home and Community Based Waiver Program. Recently, after learning about the HCBW Program from Kevin’s attorney, Mr. Ulsh requested permission to apply. While he has been permitted to apply, he has been advised by Kevin’s caseworker that he cannot say whether it is possible to obtain HCBW funding to cover community residential services for Kevin. It is unclear therefore, whether the application process and Kevin’s possible inclusion on the HCBW program will result in provision of the community residential services the family seeks. In October 2002 DMR advised the family they had an opening in a DMR group home in West Haven and were considering several DMR clients, including Kevin for the opening. After visiting the home, the family agreed with DMR that the opening was not appropriate because it would not be safe in light of Kevin’s seizure activity.
Stacey Reichenbach
18. Plaintiff Stacey Reichenbach is 24 years old (date of birth is August 12, 1978) and lives at home with her father and stepmother in New Fairfield, Connecticut. Her mother has breast cancer and does not live in the area and so is unable to care for Stacey. Stacey’s stepmother also has cancer which limits her ability to care for Stacey. Stacey Reichenbach sought supported living and applied to defendant DMR for such services in 1996, when she turned 18. In May 2000, she was told that DMR funds were available under the Waiver for supported living. With the agreement of her DMR caseworker, she deferred securing an independent living situation until after she returned from summer camp. When she returned in September 2000, her DMR caseworker told her that all funds had been exhausted and she was returned to the DMR Residential Waiting List. Stacey Reichenbach works at the local supermarket through an employment program run by DATAHR and funded by DMR. Because no independent supported living arrangement has been found for Stacey, her father faces enormous stress in caring for both his seriously ill wife and his daughter with mental retardation.
19. Stacey’s father and guardian, Stephen Reichenbach, was never advised by defendants about the existence of the HCBW program or how it could be used to address Stacey’s need for the community residential support services. In fact, Mr. Reichenbach learned about the waiver program only recently when he was advised of its existence by Stacey’s attorneys. Having learned of the existence of the HCBW program Mr. Reichenbach requested permission to file an application. He was advised at the time by defendants that he could apply, but that the Waiver was available only to reimburse DMR for services Stacey was already receiving. Defendants have not advised Mr. Reichenbach that he has a right to notice and a hearing to challenge defendants’ refusal to permit the family to use the HCBW funding to obtain the community residential support services Stacey needs. Stacey’s Follow Along Plan states that the individual supports needed to enable her to live in the community will be provided when they become available. Defendants have also not advised Mr. Reichenbach of his right to challenge DMR’s refusal to specify community residential support services as a needed service in Stacey’s plan.
Lucien Greca
20. Plaintiff Lucien Greca is a 25 year old (date of birth is August 20, 1977) DMR client who has been diagnosed with mental retardation, obsessive-compulsive disorder, and a seizure disorder. He was placed at the Hartford Regional Center of the Department of Mental Retardation in 1997 on an emergency basis. Both he and his mother want him placed in the community with staff coverage twenty-four hours a day due to his seizure disorder. Lucien Greca has suffered regression in his functioning due to prolonged placement in the behavioral unit of the Hartford Regional Center. Prior to his emergency placement at the Hartford Regional Center, Lucien Greca was educated at the River Street School, the Wheeler Clinic, and Wethersfield High School. Plaintiff’s mother, Rose Greca, has requested placement of Lucien Greca in a less restrictive environment on numerous occasions over the past four years.
21. Mrs. Greca has never been advised of her right to apply for HCBW funding even though defendants have been aware of Mrs. Greca’s opposition to her son’s institutionalization for over two years. In response to the parent’s repeated requests to apply for the Home and Community Based Waiver to cover community residential services so that her son could move out of the Hartford Regional Center, Ms. Greca was told that Lucien could not apply while he was living at the Hartford Regional Center. Ms. Greca has made other specific requests to apply for the HCBW, but to date defendants have indicated that she may apply for HCBW services only after Lucien leaves the institution. Lucien has also been denied any meaningful opportunity to choose between ICF/MR and alternative HCBW funding.
Ryan O’Kane
22. Plaintiff Ryan O’Kane is a 23 year old DMR client (date of birth is February 28, 1979) with a diagnosis of autism. He has been on the DMR Residential Waiting List since August of 2000 as a Priority 1 case. Until February 2002 Ryan lived part time with his mother and part time in a respite facility. In February 2002, however, the family collapsed due to Ryan’s severe regression, weight loss and erratic behavior. Ryan was hospitalized in Norwalk Hospital’s Psychiatric Unit as a result. Following this hospitalization, he was discharged into Founders Cottage Respite Facility. He now lives at home with his father on weekends. During the week he now lives in the Founder’s Cottage Respite Facility run by STAR, Inc.. Due to his autism, Ryan requires a structured and consistent routine. The fact that he is living out of a suitcase has caused him severe regression over the last year. Ryan works at a day program administered by STAR, Inc. and funded by DMR five days a week. His mother believes Ryan should be placed in a structured living arrangement in the community.
23. Mrs. O’Kane has made requests to apply for the HCBW to cover the cost of community residential services for her son. She was told, however, that although Ryan was enrolled in the HCBW in August 2000, the HCBW would only cover the cost of his community day program. She was also told that the HCBW cannot be used to pay for community residential support services. Mrs. O’Kane has not been provided notice or an opportunity for a hearing to challenge DMR’s determination that the Waiver cannot be used to cover the cost of community residential support services.
Matthew Vigorito
24. Plaintiff Matthew Vigorito is a 21 year old (date of birth is July 26, 1981) DMR client with Down Syndrome. He lives at home in Guilford with his 53 year old mother and 58 year old father. He has been on the DMR Residential Waiting List since his eighteenth birthday in 1999 in Priority 3. He will be capable of living independently with some supervision after he receives appropriate training. He is on Ritalin for Attention Deficit Disorder and Depakote for Depression. Matthew Vigorito’s parents want him placed independently in the community while they are healthy enough to assist in the difficult transition.
25. Defendants have never advised Mrs. Vigorito of her right to apply for HCBW funding despite the fact that they have been aware of her son’s critical need for a residential placement for two and one-half years. Mrs. Vigorito has recently requested permission to apply for HCBW funding to pay for community residential services for her son. She has been advised that DMR cannot respond to her request without consulting the DMR legal staff. They have further advised that her request will have to be responded to by the DMR lawyers. Several weeks have gone by and she has received no indication as to whether she will be allowed to apply for HCBW funding to pay for a community residential placement for their son.
Sara Austin Small
26. Plaintiff Sara Austin-Small is a 30 year old (date of birth is August 21, 1972) DMR client with a diagnosis of autism. She lives with her mother Linda Austin-Small, aged 53, and her father, Peter Austin-Small, aged 72, in Old Greenwich, Connecticut. Through her parents, Sara Austin-Small applied to defendant DMR in 1993 for supported living services. She was placed on the DMR Residential Waiting List. Since that time, she has received no residential support services from defendant DMR. She has a number of behaviors that make continued living in the family home difficult. She is largely non-verbal. Sara requires support in dressing, food preparation and in all activities of daily living. There is a growing crisis at home due to Sara’s maladaptive behaviors and increasing age of the parents.
27. Sara has been on the DMR Residential Waiting List for nine years. Despite this fact the defendants have never advised her parents and guardians that they have a right to apply for the HCBW to pay for the residential support services Sara needs. When advised of the HCBW by Sara’s attorneys, Mrs. Austin-Small asked Sara’s case manager whether she could apply for Waiver funding to pay for residential support services. Defendants advised Mrs. Austin-Small that an application for the HCBW made no sense because the Waiver has nothing to do with obtaining residential support services. DMR records reflect, nonetheless, that Sarah was enrolled in the HCBW on December 19, 2002. However, the family is unaware of Sarah’s Waiver status and has not been advised of their rights under the Waiver. Defendants have not advised Sara’s parents of their right to notice and a hearing to challenge DMR’s refusal to allow them to access Waiver funding to cover community residential support services for their daughter.
Paula Sage
28. Plaintiff Paula Sage is a 32 year old (date of birth is January 15, 1971) client of DMR. She lives in the family home in Waterbury, Connecticut. She was placed on the DMR Residential Waiting List on August 29, 2000 and assigned Priority 1. Since that time, she has received no residential support services from defendant DMR despite the fact that her circle of support has been defined, her PATH completed, a roommate identified, and a plan of support and budget submitted to DMR. Paula Sage’s guardian, Pat Sage, submitted a Request for Programmatic Administrative Review to the Regional Director on June 19, 2001, which was denied, without hearing. Pat Sage then filed a Request for Commissioner Review on August 27, 2001. The Commissioner’s representative wrote, “Unfortunately in reviewing this situation with the region, it is evident that there is no money available at this point for Self Determination initiatives such as those established for Paula. I therefore must concur with the region’s decision as sent to you on July 12th.” Pat Sage has health issues that make it difficult for her to maintain her two-story home. Paula Sage has a vocational placement at the Waterbury ARC funded by DMR.
29. The defendants have never advised the Sages of the availability of HCBW funding to pay for community residential services for their daughter even though defendants have been aware of the fact that Paula has been on the DMR priority Residential Waiting List for almost two years. When Page Sage specifically insisted on applying for HCBW funding to pay for community residential services, she was told that she could not apply for such services until DMR located a residential placement for Paula. She was told that she could apply for HCBW funding for the vocational services she was already receiving, but not for funding for a community residential services that Paula needed but were not currently available. Mrs. Sage has not been advised that she has a right to challenge DMR’s refusal to allow application for the residential support services Paula needs or its refusal to provide such services.
Jacob Pratt
30. Plaintiff Jacob Pratt is 25 years old (date of birth is October 14, 1977). Jacob Pratt lives with his widowed mother, Chris, at the family home in Southbury, Connecticut. Until July of 2001, Jacob Pratt was placed at a community training home by defendant DMR. A community training home is a family home where the family, in exchange for payment from DMR, agrees to house and care for a disabled individual. The community training home placement ended when the service provider married and had a child. Jacob was then placed in a supervised apartment. This placement was not appropriate because there was insufficient staffing and support, and Jacob alleged he was abused. He was subsequently returned to the family home for six months, and then placed by the family, with insufficient funding, into a condominium. Chris Pratt works as a firefighter and emergency medical technician at the Southbury Training School. As such she can not provide the care necessary to support Jacob at home. Jacob Pratt has limited verbal ability. He makes loud noises and has obsessive and compulsive behaviors. He is also now on medication to control seizures. He needs a highly structured living arrangement to function successfully.
31. Mrs. Pratt was asked to sign an application for the HCBW program to cover the cost of Jacob’s placement in the community training home in which he was living in October, 2000. The family was not informed of their right to participate in the development of an individual plan of care. To the best of Mrs. Pratt’s knowledge, no such plan was developed. Jacob is currently receiving an amount of DMR funding to support him that is inadequate. The amount DMR makes available is not based on an appropriate assessment of Jacob’s needs and development of an individual plan of care. As a result, Jacob does not receive sufficient staffing support to keep him safe and protect him from harm or to provide necessary programming. Mrs. Pratt has been advised that this is all the funding DMR will provide under the HCBW Program regardless of Jacob’s needs. Mrs. Pratt has not been advised that she has a right to notice and a hearing to challenge the adequacy of Jacob’s plan or the funding that is being provided under the HCBW Program. Mrs. Pratt was advised that the informal DMR review process called Programmatic Administrative Review (“PAR”) was available. She requested a PAR to challenge DMR’s failure to accurately describe and meet Jacob’s needs. Mrs. Pratt was told during the PAR that her request was denied because the funding necessary to meet Jacob’s needs was not available.
Mary Weglowski
32. Plaintiff Mary Weglowski is a 28 year old (date of birth is July 31, 1974) DMR client who is currently a resident in a respite bed at the Park Avenue group home run by the ARC of Greenwich. Her mother died when she was very young and her father died in April 2001. She has been diagnosed with mental retardation. She works competitively in the community but, at this point, has no place to live other than her current temporary residence. Despite the fact that she has been in emergency status on the waiting list since April 2001, defendant DMR has, to date, provided her with no appropriate living arrangement. Mary Weglowski receives social security benefits, but not SSI or Medicaid. As a result, defendant DMR has refused to make her eligible for participation in the Waiver. DMR used to provide employment supports for Mary Weglowski but discontinued those supports when they determined that she did not need extensive supports.
33. Defendants have never advised Ms. Weglowski of her right to apply for Waiver funding to pay for a community residential placement even though defendants are aware that she has been on the DMR Residential Waiting List for over five years and on the emergency waiting list since her father and guardian died in April 2001. In response to plaintiff’s specific requests to apply for the Waiver funding to pay for a community residential placement, she has been told that she wasn’t eligible for the Waiver because she lived at home. Ms. Weglowski has not been provided notice or an opportunity to be heard regarding DMR’s refusal let her apply for the HCBW Program.
Linda O’Neill
34. Linda O’Neill is a 45 year old (date of birth is January 25, 1958) resident of the Olympus Healthcare Center in Meriden. She has lived at Olympus Health Care since May 1995. She has been diagnosed with mental retardation and is a recipient of limited community services from the Department of Mental Retardation. Ms. O’Neill does not require the level of care provided by the nursing home in which she presently resides. In May 2001, she wrote to the Commissioner, stating that the reason she was requesting DMR eligibility was so that she could be moved to a group home and out of the nursing home. On June 4, 2001, DMR determined that Ms. O’Neill was eligible for services. Despite numerous calls by her representatives, DMR has proposed no community residential placements and has not informed Ms. O’Neill of her rights under the Waiver.
35. On December 17, 2001, Ms. O’Neill’s representative wrote to the regional director of the Southwest Region to ask “that Ms. O’Neill be permitted to apply for Connecticut’s Home and Community-Based Waiver Program for individuals with mental retardation (HCBW #CT 0153.90.R.1).” The letter requested that the DMR Regional Director, “please forward to me forthwith such application or other material which Ms. O’Neill and her conservator, Maria Sanchez, must complete for benefits under the waiver.” Despite numerous telephone messages left for the Regional Director since December 17, 2001, to date neither Ms. O’Neill nor her representative have received any response to this request and have not received notice or a hearing relating to DMR’s refusal to let Ms. O’Neill apply for HCBW services. On information and belief, Ms. O’Neill is not on the DMR Residential Waiting List because DMR does not put persons on the list who live in institutional placements.
Heather Bouffard
36. Heather Bouffard is a 33 year old (date of birth is January 9, 1970) DMR client with a primary diagnosis of 10th chromosome syndrome and a secondary diagnosis of hearing impairment. Heather brings this lawsuit by and through her mother and guardian, Pauline Bouffard. She is a person with retardation who requires 24 hour-a-day supervision for her safety.
37. Heather has been determined to be eligible for Title XIX to pay for medical services. About one year ago, Heather was placed as a Priority I on the DMR Residential Waiting List; she was first added to the DMR Residential Waiting List thirteen years ago. Heather receives day services at the Meriden/Wallingford ARC funded by DMR. Heather has been determined to be eligible for services under the HCBW and, on information and belief, some funding for her day services are paid through the HCBW Program.
38. Until October 2002 DMR told the family that residential support services could not be provided through the HCBW. DMR, instead, offered the family a few hours a week of in-home support. The family refused to accept that limited in-home support because they were concerned that DMR would drop Heather from the DMR Residential Waiting List if they accepted. Defendants at no time advised the family that they had a right to a hearing to challenge DMR’s position. The family further was unaware as to how Heather’s Service Plan under the HCBW was developed.
39. In October 2002 the family learned that Heather’s local ARC, Meriden/Wallingford ARC, had an opening in one of their group homes that might be appropriate. DMR ultimately agreed with the ARC that the group home placement was appropriate, and Heather moved into that group home.
40. Heather’s DMR Overall Plan of Service has since been modified to reflect this change of circumstances.
Sean Bouffard
41. Sean Bouffard is a 28 year old (date of birth is August 26, 1974) client of DMR who has a primary diagnosis of severe/profound mental retardation. Sean brings this lawsuit by and through his mother and guardian Pauline Bouffard. Sean has uncontrolled seizure activity, scoliosis, orthodic deficits, and is legally blind. He lives with his parents who are in their late 50's in the family home in Meriden, Connecticut. Sean requires total care, including assistance in moving from one room to another, getting in and out of the bathtub, and walking. He does not dress himself. He cannot walk without assistance, as he is very unsteady on his feet. While he can feed himself, he needs monitoring and guidance. Sean requires medication twice daily. He is on a schedule to avoid toileting accidents. Sean has been a Priority II on the DMR Residential Waiting List for seven years; he has been on the DMR Residential Waiting List since 1991. Sean receives day services at the Meriden/Wallingford ARC funded by DMR. Sean has been determined to be eligible for services under the HCBW program and, on information and belief, some funding for his day services are paid through the HCBW program. The family was unaware that Sean was enrolled in the HCBW until after this lawsuit was filed and the family asked DMR about the HCBW. Sean also receives respite services, funded through a Respite Grant.
42. DMR has told the family that residential support services cannot be provided through the HCBW. DMR has offered the family a few hours a week of in-home support. The family refused these services for fear that acceptance would cause DMR to drop Sean from the DMR Residential Waiting List. The family has been advised that residential support services cannot be included in Sean’s Individual Service Plan (Follow Along Plan) under the HCBW because there is no community placement currently available. Defendants have at no time advised the family that they have a right to a hearing to challenge this determination. In light of defendants’ erroneous advice the family has not requested a hearing to challenge Sean’s exclusion from HCBW funded residential support services.
43. Sean is desperately in need of a residential support services with round the clock staffing to monitor seizures, administer medication, and assist with mobility, eating and other activities of daily living. Sean's father is an insulin-dependent diabetic. One of his father's doctors has recommended amputation of his foot due to lack of feeling in it and discoloration. The family requires an immediate residential placement for Sean to avoid a collapse of the family.
44. Plaintiff Sean Bouffard brings this lawsuit to secure the HCBW funding that will enable him to obtain the residential supports he so desperately needs.
John Broderick
45. John Broderick, Jr. is a 32 year old client of DMR (date of birth is March 28, 1970) with Down Syndrome. He brings this action by and through his mother and guardian Julie Broderick. He lives at home in Branford, Connecticut with his 59-year-old mother and 56-year-old father. John is mentally retarded and has very limited speech and communication ability. John can toilet, eat and shower independently but must be monitored. John has constant and chronic ear problems that have required numerous surgeries.
46. John receives Medicaid benefits through Title XIX, and has a vocational placement provided by SARAH, Inc. and funded by DMR. Currently, none of the services John receives are funded through the HCBW. John has been on the DMR Residential Waiting List since he was eighteen years old. Until May 2002, John was listed as a Priority 2 on the DMR Residential Waiting List. The family was advised shortly after this lawsuit was filed that John’s priority on the DMR Residential Waiting List had been changed to Priority I. DMR has told the family, however, that Priority I still means a wait of at least five years for a community residential placement and that John would not be given a placement soon because his parents were so young. In answer to the parents’ question about what would happen to John if his parents were to die, the DMR caseworker suggested that he could go into a shelter. John receives no DMR-funded respite services or recreational services. John's annual Follow Along Plan prepared by DMR does not document his critical need for residential placement.
47. John’s father has been informed that he will be facing renal failure, dialysis and a kidney transplant in the near future. John's mother has limited mobility after bilateral knee replacements in 2001. Both parents are limited in their ability to assist John. John's mother is concerned that she will not be able to manage the needs of both her son and husband much longer. Also, Mrs. Broderick worries about what would happen to John if something happened to both parents.
48. DMR has erroneously advised the family that the HCBW is available to fund respite and some community programs, but not to acquire community residential services. In light of this erroneous advice, and defendants’ failure to advise the family of its right to challenge defendants’ decision to exclude residential services under John’s Waiver service plan, the family has not challenged DMR’s refusal to provide residential support services. DMR has never provided John and his family with an opportunity to choose between various institutional (ICF/MR) and HCBW options. DMR has never informed John or his family about their right to challenge agency actions through administrative proceedings.
49. Plaintiff John Broderick brings this lawsuit to secure the Waiver benefits that will enable him to obtain the residential supports he so desperately needs.
Jessica Connolly
50. Jessica Connolly is a 23 year old (date of birth is September 27, 1979) DMR client who lives with her parents, both of whom are in the mid-fifties, in North Branford. She brings this lawsuit by and through her mother and guardian Barbara Connolly. Jessica has been diagnosed with Pervasive Developmental Disorder and autism. She has Bi-Polar Disorder which causes frequent mood swings. She also has a very high level of anxiety. For these disabilities she receives a variety of psychotropic drugs. Until recently, she was on Depakote, requiring that her blood levels be tested often, and also, resulting in substantial weight gain. The Depakote has now been discontinued resulting in poorer behavioral control and a sharp increase in obsessive-compulsive behavior. Jessica's weight gain raised concerns both about diabetes, which is prevalent in the family, and about her mobility. Jessica does not communicate verbally or in writing. When Jessica returns home from work, she is very anxious, angry and aggressive. On weekends, Jessica is unable to occupy herself.
51. Jessica has been on the DMR Residential Waiting List for nine years and has been listed as Priority I for the last three or four years. DMR provides Jessica with a day program through SARAH, Inc., and some respite services, but has not provided the residential support services necessary to reduce stress on the family. Jessica's family has never received a copy of any annual DMR Plan documenting her need for a residential placement.
52. Jessica's DMR case manager told her mother that he is not motivated to place Jessica on the HCBW because the federal reimbursement goes into the general fund and not to DMR. He stated that he only fills out an application for the HCBW when he is ordered to do so by higher ups in the agency. Because Jessica is receiving Title XIX benefits and is in a day program, she is clearly eligible for the HCBW. For many years the family did not apply for the HCBW because DMR erroneously advised them that the program would be of no assistance to them or Jessica in securing residential support services.
53. In November 2002, Jessica’s case manager was changed because of her involvement in this lawsuit. Jessica’s new case manager arranged for Jessica to apply for the HCBW. The family understands from the case manager that Jessica has been accepted into the HCBW program, effective November 2002. The case manager updated Jessica’s Follow Along Plan at the time her application was accepted. The plan, however, ignored the family’s request for immediate residential support services. The Follow Along Plan continued to assert only that “Jessica will remain with family until residential placement can be secured.”
54. Defendants have failed to advise the family of their right to a fair hearing to challenge the failure to provide residential supports with reasonable promptness.
55. Life in the family home is stressful and draining because of Jessica's wild and frequent mood swings. When Jessica becomes manic, she does not sleep and can become physically aggressive and injures her mother. When Jessica is in a depressed state, her behaviors regress to head pounding, thumb sucking and further abuse of family members. Also, her obsessive-compulsive disorder is getting progressively worse. Jessica has come downstairs in the middle of the night and has thrown the entire contents of the refrigerator in the garbage. Jessica's mother's ability to handle Jessica in the house has been strained to the breaking point. Jessica's mother is exhausted and is unable to manage the situation any longer. Jessica's father is frequently away from home for work.
56. Jessica needs a structured routine throughout the entire year. She desperately needs to be placed in a group home or properly supported community residential setting.
57. Plaintiff Jessica Connolly brings this lawsuit to secure the Waiver benefits that will enable her to obtain the residential supports she so desperately needs.
Marcus Damiano
58. Plaintiff Marcus Damiano is a 22 year old DMR client (date of birth is November 22, 1980) with autism and mental retardation. He brings this lawsuit by and through his mother and guardian Annette Damiano. Marcus lives in New Britain with his widowed mother, Annette, aged 55, who suffers from serious asthma and depression. At times, Marcus is prone to tantrums and self-inflicted injuries. He is 6'1" tall and weighs 195 pounds. He has had significant behavior problems that have resulted in injury to himself.
59. Marcus has been on the DMR Residential Waiting List since 1996 and in the Emergency Priority Status until approximately one year ago. At that time, DMR offered limited home health care services if the family would agree to remove Marcus from the Emergency Priority on the DMR Residential Waiting List and place him in Priority Level 1 instead. Though these services were inadequate to meet the family's needs, Mrs. Damiano felt that she had no choice but to accept them, rather than remain on the Emergency Waiting List with no residential supports. Mrs. Damiano disagreed with DMR's decision to force the family to choose between two unacceptable alternatives.
60. DMR does not provide support services to address Marcus' inappropriate behaviors. Currently, Marcus receives twenty hours a week of home health care, paid for by Title XIX, Medicaid. In late May 2002, DMR provided Mrs. Damiano with an application for respite services. Mrs. Damiano has applied for those respite services and now receives limited respite. Also, Marcus started attending a CCARC day program, funded by DMR on June 18, 2002. These services are inadequate to meet Marcus’ needs.
61. Marcus' DMR case manager has advised Mrs. Damiano that no application for the Waiver has been submitted on Marcus’ behalf. The case manager has also erroneously advised the family that the Waiver cannot be used to fund residential support services. As the statements of the DMR case manager have led Mrs. Damiano to believe that applying for the Waiver will not help Marcus, she has not submitted an application.
62. Marcus needs to be placed in an appropriate group home or properly supported community residential setting immediately. Mrs. Damiano believes that Marcus deserves to live a dignified, independent existence. As a single, unemployed mother, Mrs. Damiano is stretched to the limit in trying to provide adequate care for Marcus.
63. Plaintiff Marcus Damiano brings this lawsuit to secure the HCBW benefits that will enable him to obtain the residential supports he so desperately needs.
Carmella DePanfilis
64. Plaintiff Carmella DePanfilis is a 76-year old woman (date of birth is September 7, 1926) with mental retardation. She brings this lawsuit by and through her niece and next friend Mary Anne Running.
65. Until her death in August 1999, Carmella's mother cared for Carmella at home. Since that time, Carmella has been spending three-month periods of time with each of her four elderly siblings in Norwalk. The eldest sibling is an 83-year-old sister who has high blood pressure and has not yet recovered from a colon resection last year. Her husband is an 83-year-old man with diabetes and chronic back trouble. The next oldest sibling is a brother, age 78, who is under treatment for prostate cancer. He recently had bypass surgery and a pacemaker implanted. This brother spent most of the past winter in a nursing home. His wife, who is 75, recently had hip replacement surgery and foot surgery and who is barely able to walk from difficulty with her knees. The third oldest sibling is a brother, 75 years old, who suffers from back problems, high blood pressure and severe anxiety. His wife recently had bilateral knee replacement and suffers from high blood pressure. The youngest sibling, who is 69, is unmarried, under treatment for prostate cancer, and suffers from back trouble and arthritis. No sibling can meet Carmella's need for services and support.
66. Carmella is on a considerable amount of medication for high blood pressure, heart problems, high cholesterol, diverticulitis, and osteoporosis. These medications require monitoring. Carmella requires around the clock supervision.
67. Carmella was not placed on the DMR Residential Waiting List until two years after her mother's death, in 2001. She is currently a Priority 1 on the DMR Residential Waiting List. DMR provides funding for Carmella to attend a day program at STAR, Inc. Carmella's family has never received a copy of her annual Follow Along Plan or other plan of service. In fact, the family has only met with DMR once, in August 2001. DMR has never provided Carmella and her family with an opportunity to choose between various institutional and residential placement options. DMR has never informed Carmella and her family about their rights to challenge agency actions through a fair hearing.
68. Carmella's DMR caseworker told her family that Carmella would not be considered for residential placement because she had no need in that she was not homeless. Carmella is very active and social and does not want to be placed in a nursing home. Despite Carmella's precarious living situation, DMR has failed to develop a plan for her, has met with the family only once in August 2001, and has rejected the family's requests for an immediate residential placement in the community.
69. Recently, a member of Carmella's family spoke with a DMR official about applying for the Home and Community Based Waiver. The DMR official stated that the Waiver would not help Carmella because the Waiver was only a revenue enhancement tool. She said that the Waiver permitted an individual to make more money without an offset. Since Carmella was not earning money, the family was told, being on the Waiver would be of no use to Carmella. In reliance on these statements, neither Carmella nor her family has applied for the Waiver.
70. Plaintiff Carmella DePanfilis brings this lawsuit to secure the Waiver benefits that will enable her to obtain the residential supports she so desperately needs.
Erin Hart
71. Plaintiff Erin Hart is a 23 year old client of DMR (date of birth is January 15, 1980) who has autism, is non-verbal, and has limited cognitive functioning. She brings this lawsuit, by and through her mother and guardian Jan Hart. Erin also has a seizure disorder and mental retardation. She lives with her single working mother in Winsted. Erin has become increasingly aggressive towards her family and herself. She has hurt each member of her family and herself at various times. Erin bangs her head against the wall, bites herself and jabs her finger. She has punched holes through the wall and broken lamps.
72. Erin has been on the DMR Residential Waiting List for more than four years. Last year, DMR demanded that Erin's family relinquish Erin's slot on the DMR Residential Waiting List in exchange for limited self-determination funding. The family agreed with DMR’s demand because the family needed the funding to hire people to watch Erin. The family strongly opposed being forced to choose between limited self-determination funds, on the one hand, and a position on the DMR Residential Waiting List on the other. This year, Erin reapplied for the DMR Residential Waiting List and is now listed as Priority 1.
73. Erin is in a day program provided by DMR. Recently, the family specifically requested permission to apply for the Waiver. Last year DMR formally permitted the family to apply, but, to Mrs. Hart’s knowledge, no services have been provided under the Waiver. The family does not know whether Erin has been accepted to the HCBW or whether the community residential supports Erin needs are included in her Waiver plan.
74. Due to her behavioral issues and the lack of behavior management services through DMR, Erin is acutely in need of residential support services with around the clock supervision.
75. Plaintiff Erin Hart brings this lawsuit to secure the Waiver benefits that will enable her to obtain the residential supports she so desperately needs.
Robert Janelle III
76. Robert Janelle III is a 23 year old client of DMR (date of birth is April 10, 1979) who lives with his parents in Berlin, Connecticut. He brings this lawsuit by and through his mother and guardian Marie Janelle. Robert has been diagnosed with mental retardation, bipolar disorder, and chronic anxiety disorder. Over the past two years, Robert has become increasingly aggressive, loud and hostile in the absence of appropriate in-home supports.
77. Robert has been on the DMR Residential Waiting List for over ten years. Recently, his priority level was raised to Emergency. Robert is in a day program provided by the Meriden/Wallingford ARC and funded by DMR. Robert's family has not received a copy of his annual Follow Along Plan.
78. Robert’s DMR caseworker has never provided the family with any information about the Waiver. Robert is on title XIX for medical services. Robert could live in his own apartment but would need staff supervision to get ready for work and at night to cook and prepare for bed. He also would need help with finances and reminders to shower.
79. Plaintiff Robert Janelle III brings this lawsuit to secure the Waiver benefits that will enable him to obtain the residential supports he so desperately needs.
Greg Knowles
80. Plaintiff Greg Knowles is a 28 year old (date of birth is March 30, 1974) client of DMR who lives with his parents in Guilford. He brings this lawsuit by and through his mother and next friend Judy Knowles. Greg has been diagnosed with mental retardation and some autistic tendencies. He also has severe anxiety and maladaptive behaviors that have escalated over the past year in the absence of appropriate support services from defendants. He requires around the clock care as he cannot shower on his own and needs constant prompts about his hygiene as well as assistance with toileting. Greg also lacks awareness of what is around him. He cannot cross a street safely by himself. Greg has a speech impediment that makes him difficult for others to understand.
81. Greg now receives day services through SARAH, Inc., including vocational services. Greg has been on the DMR Residential Waiting List for approximately ten years and has been listed as a Priority 2 since October 1998. DMR does not meet annually with the family and Greg's family is unaware of the existence of any annual plan of service for him. Greg's case manager has never provided information to the family about the HCBW program. When directly asked by the family, a DMR official said Greg is not on the Waiver but rather is in "active minimal status". The DMR official said Greg could apply for the Waiver if he wanted to but that the Waiver would not help him secure an appropriate residential support. The family has not pursued application for the Waiver program in reliance on the misinformation.
82. Plaintiff Greg Knowles brings this lawsuit to secure the Waiver benefits that will enable him to obtain the residential supports he so desperately needs.
Kathryn Merchant
83. Plaintiff Kathryn ("Katie") Merchant is a 30 year old client of DMR (date of birth is December 20, 1972) who lives with her single father in Greenwich. She brings this lawsuit by and through her father and guardian Donald E. Merchant. Katie has Williams Syndrome, a hormonal disorder that results in mental retardation. Until two years ago, Katie lived with her mother in Arizona. At that time, her mother died of cancer and Katie returned to Greenwich to live with her father. Katie currently works at Greenwich Woods Nursing Home. She has been on the DMR Residential Waiting List, carrying a Priority 1 designation, for approximately eighteen months.
84. Neither Katie nor her father have ever been informed about funding that might be available under the HCBW, or how they might apply for such funding. None of her services are now being paid for through HCBW funds.
85. Plaintiff Kathryn Merchant brings this lawsuit to secure the Waiver benefits that will enable her to obtain the residential supports she so desperately needs.
Sarah Miller
86. Sarah Miller is a 23 year old (date of birth is June 21, 1979) client of DMR who has a diagnosis of mental retardation. She brings this lawsuit by and through her mother and guardian Karen Miller. She lives at home with her parents in Madison, Connecticut. Sarah needs substantial assistance with tasks of daily living. She is very overweight and Sarah's parents are concerned about her health. Caring for Sarah at home is very stressful for the family.
87. Sarah receives some in-home support from SARAH, Inc. that is funded by DMR. Sarah's father has called DMR to expedite a community residential placement due for her. Each time, DMR’s response has been that it considers placement an emergency only if Sarah becomes an orphan. Then, five years ago, DMR required the family to relinquish Sarah's spot on the Residential Waiting List, where she was a Priority Level 1, in exchange for limited self-determination funds. The family reluctantly agreed because they were in desperate need of services. DMR staff represented that the DMR Residential Waiting List was really not a waiting list for residential services; that a person’s priority on the Waiting List had little to do with when a community residential setting might become available. Misled by this information, the family was required to sacrifice its place on the DMR Residential Waiting List in exchange for limited and inadequate self-determination funds. The self-determination funds have been used to provide fifteen hours a week of home care services. These home care services are not adequate to address Sarah's needs and, hence, the stress on the family has not been reduced.
88. Sarah has applied for Medicaid funding under Title XIX. Sarah's DMR caseworker has told the family that the HCBW is a funding reimbursement mechanism for DMR that cannot be used to fund residential support services. In August 2002 Sarah’s case manager asked the family to sign paperwork to enroll Sarah on the HCBW. Although the family complied they have seen no change in the inadequate level of services Sarah receives and have received no information as to Sarah’s rights under the program.
89. Plaintiff Sarah Miller brings this lawsuit to secure the Waiver benefits that will enable her to obtain the residential supports she so desperately needs.
Justin Seaver
90. Plaintiff Justin Seaver is a 21 year old (date of birth is July 27, 1981) client of DMR who is multiply handicapped. He brings this lawsuit by and through his parents and guardians David and Cynthia Seaver. Justin was born with Down Syndrome. Due to a ventral septal defect, Justin had open-heart surgery, attempting to suture his mitral valve, at 6 months of age. The valve malfunctioned necessitating a second open-heart surgery at 18 months to replace the defective valve with an artificial one. Immediately after this surgery, Justin suffered a stroke causing paralysis on his left side, a severe seizure disorder and total loss of speech. At age 3, Justin had a severe viral infection that led to a coma lasting three weeks. After he awoke, the doctors determined that he could not be intubated and inserted a tracheotomy tube that he uses to this day. As a result of the trach tube, Justin is susceptible to infection and pneumonia. At age 7, doctors diagnosed Justin with a malformed esophagus resulting in frequent vomiting. A surgery was conducted leading to the insertion of a G-tube. Justin has also had two hip surgeries: the right hip at age 9 and the left at age 11. These surgeries failed and Justin is unable to walk. He is dependent upon a wheelchair for mobility. He is in constant pain and is on heavy pain management medications. Justin has certain behavioral issues such as self-abuse, spitting, licking, and throwing things that seem to be most extreme when he is frustrated. When he is able to sign his needs, there is a decrease in inappropriate behavior.
91. Justin lives at home with his parents and his 12-year-old sister in Wallingford. He needs round the clock supervision, in part to manage his tracheotomy and other severe medical needs. Until June 2002, Justin received educational services from the Wallingford Board of Education.
92. DMR has offered to provide the family approximately $20,000 per year in residential support funds. The defendants are well aware that such limited funds do not come close to the amount necessary to provide safe residential services. DMR officials have told the parents that the agency had considered using the HCBW for funding but decided to use self-determination monies instead.
93. Both of Justin's parents work full-time. When school ended in June 2002, Justin's family was forced to care for his substantial needs and provide vocational services for $384.62 per week. Justin's parents have purchased a special van for transportation. Justin's service provider needs to have staff capable of handling his seizures and other medical needs, qualified to provide intensive job support.
94. Justin has been assigned a Priority Level I on the DMR Residential Waiting List. The family asked that he be placed on that Waiting List five years ago. The family was allowed to apply for the Waiver and Justin was approved March 1, 2002. The only service that has been provided under the HCBW, however, is an educational consultant. The family requested a behavioral consultant but DMR denied the request, claiming that Justin did not need such a service. The family has asked that community residential support services and day services be funded through the HCBW. DMR’s response was Connecticut does not use the HCBW for such purposes. On information and belief, DMR has excluded residential support services from Justin’s individual service plan under the Waiver even though it is clear that Justin needs residential services. Defendants have failed to inform the family that they have a right to a hearing to challenge DMR’s decision to exclude residential services from Justin’s HCBW service plan.
95. Plaintiff Justin Seaver brings this lawsuit to secure the Waiver benefits that will enable him to obtain the residential supports he so desperately needs.
Alicia Steinfeld
96. Plaintiff Alicia Steinfeld is a 22 year old (date of birth is November 17, 1980) client of DMR with a diagnosis of Down Syndrome. She brings this lawsuit by and through her mother and guardian Arlene Steinfeld. She lives at home with her mother and father in Easton, Connecticut. Alicia is very moody and uncooperative at home. She has refused to go to work and has severe obsessive-compulsive tendencies.
97. Alicia has been on the DMR Residential Waiting List as Priority 3 for several years. Alicia’s DMR Plan states, "Alicia will be referred for the Home & Community Based Waiver." The family is currently receiving limited respite care through STAR, Inc. funded through DMR. The Individual Plan Summary, developed by DMR, states that Alicia is to live independently in one to two years.
98. Alicia's DMR caseworker has advised the family that the HCBW does not affect Alicia; that the Waiver is just a revenue matter. The only way the HCBW could benefit Alicia, according to the DMR caseworker, is that, under the Waiver, federal benefits would not be reduced if she earns money above the income ceiling. The DMR caseworker also said that the Waiver would only support a group home, but not supported living in the community. As a result of this misinformation, the family concluded that the HCBW will not benefit Alicia and has been discouraged from applying. Indeed, when the family asked the DMR caseworker last year if they could apply, the DMR caseworker told them not to do so. Alicia’s DMR file now indicates, however, that despite this misinformation, that DMR has placed her on the Waiver, apparently to capture federal reimbursement. Placement on the HCBW has been of no benefit to Alicia, however. DMR has failed to inform the family that they have a right to choose between ICF/MR and HCBW community-based services. DMR has never informed the family that it has a right to a hearing if they are dissatisfied with Alicia’s Plan of Service or level of services funded under the HCBW.
99. Plaintiff Alicia Steinfeld brings this lawsuit to secure the Waiver benefits that will enable her to obtain the residential supports she so desperately needs.
Connie Sullivan
100. Plaintiff Connie Sullivan is a 22 year old client of DMR (date of birth is April 28, 1980) with Down Syndrome. She brings this lawsuit by and through her mother and guardian Rita Sullivan of Greenwich, Connecticut. Connie lives with her single mother and her disabled sister in Greenwich. Connie has significant cognitive limitations. She is unable to protect herself when harm is threatened and requires around the clock supervision. Her mother has installed special locks in the exterior doors because Connie elopes and wanders. Connie cannot be easily understood because she has a severe stutter.
101. Connie is on DMR’s Residential Waiting List, carrying a Priority Level 2 designation. She is not receiving Waiver funding despite the fact that her mother filled out an application for the Waiver early in 2002. DMR has not advised the family of their right to a hearing to challenge DMR’s decision to exclude funding for residential support services from Connie’s Individualized Support Plan (Follow Along Plan) and/or to not provide funding for services under the HCBW.
102. Connie's mother must sell her house in the near future. Mrs. Sullivan is concerned about where Wendy will live after she sells the family home. Due to her low cognitive ability and her history of elopement, Connie requires twenty-four hour a day, seven days a week supervision.
103. Plaintiff Connie Sullivan brings this lawsuit to secure the Waiver benefits that will enable her to obtain the residential supports she so desperately needs.
Wendy Sullivan
104. Plaintiff Wendy Sullivan is a 23 year old client of DMR (date of birth is July 22, 1979) with Down Syndrome. She brings this lawsuit by and through her mother and guardian Rita Sullivan. Wendy lives at home with her single mother, who is 63 years old, and her disabled sister in Greenwich. Wendy cannot read, but can find exit signs and the ladies room.
105. Wendy is on DMR’s Residential Waiting List, carrying a Priority Level 1 designation. Wendy works, through ARC of Greenwich, at the Davidoff cigar facility in Stamford, and attends ARC’s community network social program twice a week. DMR provides a small sum of money to Mrs. Sullivan for respite care. Wendy is not receiving HCBW funding despite the fact that her mother filled out an application for the Waiver early in 2002. She has not been advised of her right to request a hearing to challenge DMR’s decision to exclude residential support services from Wendy’s Follow Along Plan and/or to not provide funding for services under the HCBW.
106. Ms. Sullivan must sell her home in the near future. She is concerned about where Wendy will live after her home is sold.
107. Plaintiff Wendy Sullivan brings this lawsuit to secure the Waiver benefits that will enable her to obtain the residential supports she so desperately needs.
Defendants
Peter O’Meara
108. Defendant Peter O’Meara is the Commissioner of the Department of Mental Retardation of the State of Connecticut. As such, he is responsible for ensuring the lawful provision of services to individuals with mental retardation. The Department of Mental Retardation (DMR) operates the Home and Community Based Waiver for individuals with mental retardation under the supervision of the Department of Social Services, which is designated as the single state Medicaid Agency. DMR is responsible under the HCBW for receiving applications and providing Waiver services to eligible persons. Defendant O’Meara is aware, through his participation in the legislative process and through his statutory responsibilities, that there are over 1,700 persons with disabilities who have requested residential support services and are eligible for those services, yet have not received those services for extensive periods of time. He is also aware that DMR operates the HCBW as a mechanism to capture federal Title XIX reimbursement for services funded through DMR, rather than as an entitlement program as intended by Congress. Despite this knowledge, defendant O’Meara has failed to take such actions as are reasonably necessary to enable persons who need community residential services to obtain funding under the HCBW program to pay for those services. He is sued in his official capacity for declaratory and injunctive relief.
Patricia A. Wilson-Coker
109. Defendant Patricia A. Wilson-Coker is the Commissioner of the Department of Social Services (“DSS”) of the State of Connecticut. Defendant Wilson-Coker is responsible, as Commissioner of DSS, for the lawful operation of the Department. The Department of Social Services is the single state Medicaid agency for the State of Connecticut. As Commissioner, she is responsible for submitting Connecticut’s Medicaid State Plan under Title XIX of the Social Security Act to the Center for Medicare and Medicaid Services (“CMS”), a governmental unit under the auspices of the United States Department of Health and Human Services, and for seeing to it that DMR implements the HCBW in a manner that is consistent with federal law. As such, DSS is responsible for the implementation for the requirements of the Waiver. As Commissioner, defendant Wilson-Coker is aware of the requirements of federal law that all potentially eligible persons needing support under the HCBW program should be allowed to apply, that all recipients must have a plan that reflects their individual needs, that services specified in that plan must be provided with reasonable promptness, and that recipients have a right to notice and a hearing to challenge adverse determinations under the HCBW program. The Commissioner is also aware that persons living in DMR institutions must be allowed to choose ICF/MR or HCBW services and to receive DMR services in the most integrated appropriate setting. Although she is aware, in contrast, that persons on the DMR Residential Waiting List and those institutionalized are not allowed to participate in the HCBW program until the DMR defendant identifies an existing community placement for the applicant; she has taken no action to rectify the situation. Further, the defendant Wilson-Coker is aware that many Waiver recipients receive HCBW for only limited day or vocational support services even though their need for broader and often far more expensive residential support services is well known but ignored. Defendant is also aware, as a result of her involvement in the legislative process, that many putative class members have not received waiver services for extensive periods of time. In short, defendant Wilson-Coker has failed to take such actions as are reasonably necessary to ensure that the HCBW program is implemented in accordance with federal law. Commissioner Wilson-Coker is sued in her official capacity for declaratory and injunctive relief.
IV. Class Action Allegations
110. This suit is brought as a class action on behalf of a class of persons that was certified by the Court on January 30, 2003 to include all individuals:
1) who have been found to be eligible and remain eligible for DMR services in accordance with state law, and
2) who either (a) have applied for and are eligible for services covered by Connecticut’s HCBW; or (b) would apply for and be eligible for services covered by Connecticut’s HCBW, if given the reasonable opportunity to apply; and
3) who cannot obtain the HCBW services for which they are presently eligible or for which they would be eligible, if given the reasonable opportunity to apply,
4) because of policies and practices of the defendants that are prohibited by federal law.
111. The class is so numerous that joinder of all class members is impracticable. According to the May 2000 report of the Waiting List Focus Team, entitled “How to Eliminate the Waiting List: Study and Recommendations”, published by the State of Connecticut, Department of Mental Retardation, there were 1,434 persons on the Waiting List as of September 30, 1999. According to defendants’ response to plaintiffs’ discovery there are currently approximately 1,700 persons on the DMR Residential Waiting List statewide. In addition, on information and belief, over 130 additional class members are unable to move from institutional settings to the community and/or have been denied the right to choose between institutional (ICF/MR) and community-based waiver services due to the policies and practices challenged in this complaint. The number of class members cannot be accurately quantified because persons who need HCBW funding are discouraged from applying, and many others are receiving the HCBW funding for services that are insufficient in amount, duration and scope to address their individual needs. For example, defendants indicate in their Response to Interrogatories that 533 people who are currently enrolled in the Waiver are currently on the DMR Residential Waiting List. Therefore, the class includes approximately 2000 individuals to the extent that the class is quantifiable at this early stage of the proceedings.
112. There are questions of law and questions of fact common to the class. The common questions of law are (a) whether it is permissible under the Medicaid Act for a participating state to fail to inform persons in need of HCBW funding of their rights under the HCBW program and to deny such persons the opportunity to apply and/or discourage such persons from applying for needed HCBW services; (b) whether it is permissible under the Medicaid Act for a participating state to fail to provide an individual eligible for services under the waiver with a choice between ICF/MR services or equivalent home and community-based waiver services; (c) whether it is permissible under the Medicaid Act for a participating state to fail to provide an individual eligible for services under the waiver with waiver services in a timely manner; (d) whether it is permissible under the Medicaid Act’s comparability provisions for a state to refuse to provide residential services to HCBW recipients needing such services because residential support services are not currently available; (e) whether it is permissible under the Medicaid Act for a state to refuse to allow institutionalized individuals to apply for waiver funding for a community residential support services until after those individuals are transferred from the institution; (f) whether it is permissible under the Medicaid Act for a state to fail to develop and implement individual plans of care which reflect the individual needs of the disabled citizen; (g) whether it is permissible under the Medicaid Act for a state to fail to provide notice and an opportunity for a fair hearing to persons who disagree with determinations made under the HCBW program; (h) whether it is permissible under the Due Process Clause to the Fourteenth Amendment to deny waiver services to eligible individuals without notice and an opportunity to be heard; and (i) whether it is permissible under the Americans with Disabilities Act to fail to provide individuals eligible under the waiver with residential services and day habilitation programs in the most integrated setting appropriate to the needs of the individual with disabilities. The common questions of fact are (a) whether the defendants have failed to inform class members of their rights under the HCBW program; (b) whether the defendants have inaccurately and improperly described the rights of HCBW recipients and prospective recipients so as to discourage them from securing their entitlements under the HCBW program; (c) whether defendants have failed to provide HCBW recipients with waiver funding for community residential services with reasonable promptness; (d) whether the defendants do not permit application for or provide HCBW funding to cover community programs and services until after a class member is actually placed and receiving those programs and services; (e) whether the scope of funding provided to applicants under the HCBW program is based on the scope of services that are available in the DMR system, rather than on a HCBW recipient’s individual needs; (f) whether the defendants have failed to provide putative class members with a choice between an institutional (ICF/MR) services and home and community-based services; (g) whether the defendants have denied class members HCBW funding without notice and an opportunity to be heard with regard to adverse actions under the HCBW program; and (h) whether the defendants have failed to provide class members with residential services and day habilitation programs under the HCBW program in the most integrated setting appropriate to their individual needs.
113. The plaintiffs’ claims are in all material regards typical of the claims of all individuals eligible for services under the Waiver who are being denied necessary services in a timely manner.
114. The representative parties will fairly and adequately protect the interests of the class. The individual plaintiffs, the organizational plaintiff, and plaintiffs’ counsel are committed to the interests of the class of persons sought here to be represented. This suit seeks neither money damages nor any other benefit to the named plaintiffs that would not accrue to the benefit of all those similarly situated by the grant of the declaratory and injunctive relief requested here. Plaintiffs’ lead counsel is a long-time civil rights litigator in this Court with substantial experience in class action lawsuits. Appropriate arrangements have been made to secure the requisite funding for this litigation.
115. Defendants have acted on grounds generally applicable to the class, thereby making appropriate final injunctive relief or corresponding declaratory relief with respect to the class as a whole.
V. The Facts
116. Title XIX of the Social Security Act, 42 U.S.C. § 1396 et. seq., establishes Medicaid, a joint federal-state program to provide medical and related care to eligible persons. Costs are shared between the federal and the state governments.
117. Under the current arrangement, the federal government reimburses Connecticut fifty percent of its expenditures under Medicaid.
118. Medicaid recipients are broadly eligible based on two categories of coverage, categorically needy and/or medically needy. Categorically needy recipients may be eligible based upon their receipt of cash assistance such as supplemental security income. Medically needy recipients meet the medically needy requirements of the waiver. All class members are medically needy.
119. States are not required to participate in Medicaid, but may do so by submitting an appropriate Medicaid plan to the Center for Medicare and Medicaid Services (CMS), formerly the Health Care Financing Administration (HCFA). Once a state elects to participate in Medicaid, it must do so in accordance with applicable federal statutes and regulations.
120. For participating states, providing certain services is mandatory. If a state participates in Medicaid, it must provide a base level of services. 42 U.S.C. § 1396a (a)(10)(A). Other services are optional. Once a state elects to provide an optional service, however, it must do so in accordance with the same requirements as the mandatory core services. These requirements include the right to apply for services, the right to notice and a fair hearing, the right to have services delivered with reasonable promptness, and the right to services of adequate amount, duration and scope.
121. Waiver recipients are entitled to medically necessary Medicaid services, i.e., those services necessary to ensure their “health and welfare,” 42 U.S.C. § 1396n (c)(2)(A). The services are required to be incorporated into the recipient’s plan of care. 42 U.S.C. § §1396n (c)(1) and (c)(4)(B). Services received by recipients can vary as their circumstances change for better or worse. In some cases, relatively minor assistance may be required; in other cases, substantial services may be necessary. States may set a limit on the number of persons for whom they will provide waiver services under their waiver plans for individuals with mental retardation as long as the number is not fewer than 200. 42 U.S.C. § §1396n (c)(9) and (c)(10). Participating states cannot, however, fail to fund the medically necessary services of the waiver recipients it has undertaken to serve through the waiver program.
122. States must allow all persons wishing to make application for Medicaid to do so. States must then furnish medical assistance “with reasonable promptness to all eligible individuals,” 42 U.S.C. § 1396a (a)(8), and continue furnishing the service until the recipient is found to be ineligible to continue to receive assistance. 42 U.S.C. § 1396a (a)(10). States must assure that care and services under the plan are provided in a manner consistent “with the best interests of the recipients.” 42 U.S.C. § 1396a (a)(19).
123. In order to be granted approval for a waiver covering individuals with mental retardation and other developmental disabilities, states must assure CMS that “necessary safeguards ... have been taken to protect the health and welfare of individuals provided services under the waiver.” 42 U.S.C. § 1396n (c)(2)(A); 42 C.F.R. § 441.302(a).
124. The Intermediate Care Facility for the Mentally Retarded (ICF/MR) program is an optional Medicaid Service. Connecticut has chosen to provide ICF/MR services. The purpose of ICF/MR is to provide health and rehabilitative services for individuals with mental retardation. See 42 U.S.C. § 1396d(d). The individuals entitled to ICF/MR services must receive a continuous active treatment program, which includes aggressive, consistent implementation of a program with specialized training, treatment, health services and related services. The goal of these services is to increase functional performance and prevent loss of self-determination or independence. See 42 CFR § 483.440(a).
125. As an alternative to ICF/MR care, a State may offer, provide and receive Federal reimbursement for home and community based waiver (“HCBW”) services for the mentally retarded and developmentally disabled if the State obtains a “waiver” from CMS. 42 U.S.C. § 1396n(c)(1). Connecticut has had such a waiver for many years. The home and community based waiver program allows individuals who otherwise require care in a nursing home or ICF/MR to receive services in their own homes or home-like settings in the community.
126. As explained in the regulations, § 1915(c) [42 U.S.C. § 1396n] permits states to offer, under a waiver of statutory requirements, and array of home and community based services individuals need to avoid institutionalization. 42 CFR § 441.300. Under Federal law, the only limitation on the number of persons served and the intensity of the services offered is that the waiver must be cost neutral, meaning that the average costs of providing services to and individual in the community must not exceed the average costs for the same level of services in facilities or institutions. 42 U.S.C. § 1396n(c)(2)(D). The cost of providing services through the HCBW, however, is typically much less than providing services in an ICF/MR institution.
127. Congress adopted the home and community based waiver program in order to allow individuals who otherwise require care in ICF/MRs to receive needed services in their own homes or home like settings. See 42 U.S.C. § 1396n(c). Connecticut provides services under the home and community based waiver program. Services available in Connecticut waiver program include, among others, respite care, residential habilitation services, individual supports, day habilitation services, prevocational services, supported employment services, specialized medical equipment and supplies, and Family training. Connecticut’s waiver slots are approved by CMS. Connecticut can apply to CMS for more waiver slots at any time if it so desires.
128. The array of services that can be funded under the HCBW are sufficient to enable all class members to live safely in the community.
129. Under the federal regulations, in order to participate in the HCBW program, states must provide assurance that when a recipient is determined to be likely to require the level of care provided in an ICF/MR, the recipient or his or her legal guardian must be informed of any feasible alternative available under the waiver, and given the choice of either institutional or home and community based services. 42 CFR § 441.302(d)(1) – (2); see also 42 U.S.C. § 1396n(c)(2)(C).
130. Connecticut has provided this assurance to the federal government in its waiver application. Each plaintiff is categorically eligible for Medicaid and meets the ICF/MR eligibility criteria. Despite assurance that Connecticut would provide eligible Medicaid recipients a choice of either ICF/MR or HCBW services, Defendants have not provided plaintiffs and members of the plaintiff class with a choice. In fact, neither ICF/MR services nor appropriate ICF/MR level services in the community under the HCBW have been made available to plaintiffs and members of the plaintiff class.
131. On June 28, 2000, Connecticut wrote the CMS predecessor agency, HCFA, to request renewal of its Waiver, pursuant to section 1915(c) of the Social Security Act. 42 U.S.C. § 1396n. This request was amended on October 25, 2000 and clarified on January 19, 2001, before it was approved on January 24, 2001 by HCFA. Pursuant to the approval, Connecticut estimated that it would serve 6,075 Waiver recipients during the federal fiscal year ending on September 30, 2001; 6,626 recipients during the federal fiscal year ending September 30, 2002; 7,214 recipients from October 1, 2002 to September 30, 2003; and 7,521 recipients from October 1, 2004 to September 30, 2005.
132. The number of individuals who receive residential support services funded under the HCBW program each year is so low that a substantial waiting list has developed. The Department of Mental Retardation maintains both a waiting and planning list for residential services and supports. These lists are made necessary by the lack of sufficient funding including the deliberate withholding of needed HCBW services to respond in a timely manner to requests for residential supports. Each DMR region is obliged to plan for all eligible individuals who are may require residential services. This is the Planning List. A subset of the Planning List, called the DMR Residential Waiting List, consists of those individuals with mental retardation who either live at home with their families or independently and require residential service or support. As of September 30, 1999, there were 1,434 people on the DMR Residential Waiting List. By July of 2001, the number of people on the DMR Residential Waiting List had risen to 1,575. The number exceeded 1,700 individuals as of February 1, 2003.
133. DMR prioritizes the individuals on the DMR Residential Waiting List. Emergency means the person has an immediate need for residential supports. Individuals categorized as Priority 1 need a residential service within one year. Individuals labeled as Priority 2 need residential services within two years. Those placed in Priority 3 need residential services within the next three to five years. On September 30, 1999, 55 or 4% of those on the DMR Residential Waiting List were categorized as emergency; 531 or 37% were categorized as Priority 1; 309 or 22% were categorized as Priority 2; and 539 or 37% were categorized as Priority 3. Of the 1,434 individuals on the priority list on September 30, 1999, 1,375 lived at a family home.
134. Although DMR does not formally have a waiting list for individuals in need of day habilitation programs and services, at times individuals must also wait for placement in appropriate day habilitation programs.
135. Defendants have represented to the federal government that defendants have no waiting list for the HCBW. As the facts outlined above indicate, however, nearly 1,700 individuals have been placed on the DMR Residential Waiting list for as long as ten years. Under defendants’ practices these individuals will not be informed of their rights under federal law or allowed to apply for HCBW funded residential services and/or will not be allowed to process a HCBW application for residential support services until the DMR is able to arrange for the needed services through its legislative appropriation. Defendants’ representation, therefore, that they have no waiting list for waiver services is far from accurate and less than candid.
136. Further, the State of Connecticut has undertaken procedures, practices and policies that result in the denial of any meaningful choice of services (either ICF/MR or waiver services) to persons eligible for residential services.
137. Applying for waiver services is a complicated process. First, defendants do not tell persons needing waiver services about their rights under the waiver. Second, for those who do apply, defendants will fund only those services that are already available under existing DMR funding. Applicants are told for example that waiver services cannot be used to fund new community residential services. Third, defendants do not conduct a professionally acceptable assessment of the needs of applicants and do not identify needed residential support services in an applicant’s plan of care when no such services are available. The result is that individuals who desire community residential supports are discouraged from applying for such services and do not receive them even though those individuals may be in great need of such services.
138. Defendants limit ICF/MR and waiver services by denying eligible individuals and their families information about the pre-admission evaluation process by denying them the right to an individual service plan that reflects their individual needs, and by denying them the right to appeal a deprivation of services or a limitation of services. Defendants’ employees tell eligible individuals and their parents that there is no funding for services. Moreover, defendants have no policies or other documents that explain to potential applicants or HCBW recipients their rights under the program.
139. There is no formalized outreach process that identifies persons who might be eligible for waiver services and advises them of the availability of waiver funding or how waiver-funded services may be accessed. Basically, in order to access waiver funding an individual must already be in receipt of the services for which he requests funding, or he must be determined to be in an emergency category on the DMR Residential Waiting List. To be determined to be in such a critical state a person would have to experience a death of his only caretaker relative or have no support services to meet his needs. This process is destructive of families and harmful to class members.
140. Many individuals on the DMR Waiting List are over 40 years old, and many of the parents who now care for them are elderly and becoming progressively less able to care for them.
141. Because an emergency case gets priority and there are so few openings, people on the DMR Residential Waiting List can wait for years without getting residential support services. These individuals are not informed about the HCBW program and those receiving limited services under the HCBW are not informed of their right to request a hearing to challenge the adequacy of the amount duration and scope of services they are receiving.
142. Cost to the State of Connecticut is a factor used by defendants in determining how many persons out of those who are eligible will receive Medicaid waiver services. This eviden