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Marc’s Story - Marc is an eleven year old boy who isn’t sure how he came to live at Riverview Hospital. He just knows he has been there for a long time.  More than anything else, Marc wants to be able to go home.  When Marc is hungry or tired he sometimes acts out at the hospital.  He doesn’t know if he has a safety plan to use in times of crisis but he has his own ideas about what helps him.  Taking a nap, eating a piece of fruit, or squeezing a ball helps him calm down, but he doesn’t know how to ask staff for those things.  Marc wishes that staff would simply ask him if he needs to take a nap when he is getting upset.

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Andrew’s Story - When the P&A advocates first met sixteen year old Andrew they were warned that he was “one of those kids” who is “just up and down”.  They were warned that he could quickly become very violent, and were asked if they wanted a staff member present for safety during their interview.  They declined.  When the advocates met Andrew, they found a very different child.  Andrew struck the interviewers as not only bright but polite, thoughtful, and gentle.  “Please”, “thank you”, and “ma’am” seemed to roll off his tongue naturally and without thought.  Andrew expressed a deep respect for living things, and shared his dreams of becoming a veterinarian some day. 

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Andrew has been hospitalized at Riverview Hospital several times. During his last hospitalization, he tried to take his own life on three separate occasions. Every time Andrew has an outburst, the Connecticut State Police are called to intervene and he is usually physically restrained, mechanically restrained (strapped down to a bed by his arms, legs, and midsection), and/or placed in locked seclusion. Calling the police makes Andrew feel scared and disappointed.  The police intervention, restraints and seclusion are not in the least bit helpful to him. He does not feel safe. Andrew knows what is helpful to him during a crisis; talking, listening to music, drawing, and playing with Legos™, but no one asks him.  Andrew has a safety plan but he doesn’t know what’s in it or how to use it.   He feels that he isn’t given the chance to make choices in his treatment or his life while at Riverview Hospital.  Andrew is trying to find his way, but needs to be given the skills and opportunities necessary to succeed.

Fatality Review Board

The Fatality Review Board for Persons with Disabilities (FRB) was established by Executive Order 25 (February 2002) to bring greater independence and oversight to the fatality review process for people with intellectual disabilities who receive services from the Department of Developmental Services (DDS).  The FRB is supported by P&A and operates independent of the DDS independent mortality review structure.  FRB staff tracks all reported DDS client deaths and pursues preliminary inquiries and full, independent investigations into selected deaths.  The Executive Director of P&A is the chair of the FRB.  The FRB also has Governor-appointed members who are drawn from medical, law enforcement, and human service professions. The Commissioner of DDS or designee sits as a non-voting member. In April 2010, Governor Rell issued Executive Order 42, updating the FRB by adding an additional Board member who has expertise in teaching forensic investigation techniques. 

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In 2009, the Connecticut Legislature passed Public Act 09-67, requiring the Department of Mental Health and Addiction Services (DMHAS) to report the death of anyone receiving inpatient behavioral health services in a DMHAS-operated facility to P&A within 30 days after the individual's death.  P&A and DMHAS staff met during this fiscal year and developed a protocol for reporting these deaths to P&A.

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The FRB reviewed 176 deaths during the year. Forty-two (42) cases were subject to in-depth discussion, monitoring and review by the FRB. Additionally, the FRB investigated the circumstances surrounding 13 deaths where there was reason to suspect that abuse or neglect may have been a contributing factor.  FRB staff also received reports of 11 deaths from DMHAS.  Nine (9) of these deaths have been reviewed.

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FRB is Published! In 2008, the FRB initiated a review of a sample of deaths of DDS clients occurring in nursing homes over the five-year period between January 1, 2002 and December 31, 2007.  The primary purpose of this inquiry was to examine variables which might influence nursing home placement and the length of nursing home stay.  The results of the study were published in the Journal of Policy and Practice in Intellectual Disabilities (September 2010). The article, A Pilot Study Analyzing Mortality of Adults with Developmental Disabilities Residing in Nursing Homes in Connecticut, noted that 1) many individuals were admitted to nursing homes at an earlier age than for the non-disabled general population; 2) people with intellectual disabilities stayed in nursing homes longer, and died later than the general population of non-disabled individuals admitted to nursing homes; 3) about half of the individuals received case management on at least an annual basis; a third had no documented case management; and 4) a lack of appropriate alternate residential settings, lack of support services for families, and lack of case management resources for adults with intellectual disabilities residing in nursing homes in Connecticut were all apparent.  The authors concluded that better standards of care and medical practices must be developed, more effective administrative and support services must be coordinated, and ultimately, family supports must be increased in order to prevent non-medical admissions to nursing homes.

Case Services Unit - Information and Referral

DID YOU KNOW?   You can obtain information from P&A through a variety of sources including P&A's website (www.opa.ct.gov), over the telephone, through the mail, by e-mail or by visiting the agency.

P&A and its subcontractors received requests for assistance from 4,918 individuals with disabilities, their family members, and interested parties.  Of these, 3,419 were requests for information and referral, or short-term assistance. The remaining 779 requests received a more intensive level of advocacy representation.

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P&A’s advocates handled requests for information and assistance from callers, walk-in clients, legislators, e-mail contacts, letters and visitors to the P&A website.  More than 560 requests related to Abuse or Neglect including inappropriate mental health treatment; excessive or involuntary medication; physical, verbal or sexual assault; inappropriate restraint; and financial exploitation. They also responded to questions concerning Housing (513), Government Benefits and Services (395), Rights Violations (288), Services (430), Employment (188), Education (178), Healthcare (105), Rehabilitation Services (105), Financial Entitlements (71), Transportation (52), Architectural Accessibility (48), Parental Rights (28), Assistive Technology (30), Guardianship (27), Post Secondary Education (20), Insurance (19), and Recreation (12). Advocates also responded to 335 requests for simple information like a copy of a publication or the name of a case manager.  Callers also contacted P&A about voting rights and access to government programs.

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The YMCA started asking questions when Sara, the mother of 3 girls, attempted to enroll them in an after school program.  Sara completed and submitted all the required paperwork for each child.  When the YMCA staff person reviewed the paperwork, she noticed that 2 of Sara’s daughters would be dropped off by their school bus after their day at a local public school. The 3rd daughter was also being dropped off by a school bus, but from a school outside the district.  The YMCA staff person questioned the difference forcing Sara to explain that her daughter, Madison, has autism and her educational program is in a different school.

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The Director of the YMCA immediately contacted Sara, informing her that before Madison could be accepted into the program, a copy of her school’s educational plan would need to be submitted along with notes from her teacher and doctor saying that the after school program was appropriate for Madison. Sara explained that she was not requesting any accommodations for Madison, but was told that she had to submit the additional paperwork anyway. Sara contacted P&A.

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A P&A Information & Referral advocate spoke with Sara and explained Madison’s civil rights as a person with a disability. She also let Sara know that she was not required to submit the educational plan and notes from the doctor and the teacher. Sara relayed this information to the Director of the YMCA who then insisted that Sara bring Madison in for a meeting before she could be accepted into the program. Sara, exasperated, contacted P&A again. The case was assigned to a P&A attorney. 

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The attorney immediately contacted the YMCA. After many attempts to resolve the issue with registration staff and supervisors, she was finally able to speak with the Director of the YMCA.  The Director reported that the information sought conformed to agency policy regarding the admission of any child with a disability to the program.  P&A’s attorney explained that those requests were discriminatory under Title III of the Americans with Disabilities Act because they create an additional burden for children with disabilities and their families before the children can participate in the program. After further discussion, the YMCA allowed all 3 children to register. Madison is now attending the program with her sisters and Sara did not have to submit additional paperwork or bring Madison in for a pre-admission meeting.

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Advocates assigned to the Advocacy Representation Division protect the rights of adults and children with disabilities living in institutions and the community.  In addition to providing advocacy representation and training on disability-related topics, advocates intervened on behalf of groups and individuals, including children with disabilities in need of appropriate planning and supports to meet their educational needs; and adults with disabilities needing assistance with becoming employed or resolving barriers to maintaining employment. They also represented people with disabilities seeking remedies for issues related to abuse; neglect; accommodations in housing; access to assistive technology; forced medication; parenting with a disability; programmatic and structural accessibility; effective communication in hospital and law enforcement settings; and guardianship.  Advocacy Representation Division staff attorneys seek administrative or judicial remedies involving discrimination based on disability.  The Advocacy Representation Division of the Case Services Unit is composed of a number of distinct federally mandated advocacy programs for people with disabilities, as illustrated on the chart on page 21 of this report.

P&A advocates and attorneys provided representation to 704 individuals with disabilities.  They requested advocacy in the areas of Education (179), Abuse (88), Rehabilitation Services (86), Neglect (65), Rights Violations (51), Healthcare (34), Government Benefits (32), Financial Entitlements (28), Quality Assurance (22), Employment (13), Housing (12), Services (12), Architectural Accessibility (10), Assistive Technology (8), Transportation (5), Guardianship (4), Unnecessary Institutionalization (4), and Voting (2).  Thirty one (31) issues involved other problems such as childcare, recreation, and parental rights. 

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Upon disembarking from an airplane, George discovered that his highly specialized wheelchair had been damaged during the flight.  The wheelchair was not returned to him but was taken to an undisclosed location.  He was not given sufficient documentation or information about its location.  Without his primary means of mobility or information about how to get it back, George called P&A in frustration.  The P&A advocate contacted the airline and then the vendor who had the wheelchair.  She informed them about the rights of air travelers with disabilities under federal law and negotiated for the quick repair and return of George’s wheelchair.  The advocate was assured that the repaired wheelchair would be returned within a reasonable amount of time; she also connected all parties so that George would be in the middle of, not outside, the loop. Two days later, the repaired wheelchair was returned.

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Everyone Counts! - Before the November 2010 election, the P&A received a call from Alice, a voter with a disability who discovered that the changes made to her polling place had significantly reduced the degree of accessibility.  The Registrars of Voters were required to change Alice’s polling place to a new location in the same building.  The entrance to the new polling place was also in a new location, one that did not have accessible parking.  Alice would be able to go to the polls but she could not make it to the polling place because the walk was too far.  Alice wanted to vote on Election Day so she contacted P&A for assistance. 

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A P&A advocate immediately contacted the Town’s Registrars of Voters to discuss the polling place problem. The Registrars arranged for an on-site visit with the Town’s facilities manager. Several temporary solutions were negotiated and the ground was laid for permanent solutions to be implemented before the next election. The situation will be monitored by the client, the P&A advocate, and staff at the Secretary of the State’s office.

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Jen and her husband Pete are both deaf.  Pete’s doctor referred him to a specialist for an orthopedic issue.  Jen contacted the specialist’s office by relay to schedule an appointment. After providing insurance information and scheduling the appointment, Jen requested a sign language interpreter. She was told that the doctor’s office would not provide one and that they were responsible for bringing someone who could interpret. Jen attempted to tell the Office Manager that it was the doctor’s responsibility to schedule and pay for the interpreter but the Office Manager refused and disconnected the call. Jen called P&A.

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Jen spoke with an Information & Referral (I&R) advocate and explained the situation. The Advocate contacted the doctor’s office and spoke to the Office Manager, who repeated that it was the patient’s responsibility to bring an interpreter. The advocate explained that healthcare offices have an obligation under the Americans with Disabilities Act to provide effective communication including sign language interpreters. It was not the patient’s responsibility. She also faxed the Office Manager a copy of P&A’s booklet entitled, “Healthcare Providers’ Obligations under the Americans with Disabilities Act.” They reviewed the booklet and the Office Manager agreed to discuss the situation with the doctor to see if they could change their policy. A short while later, the Office manager called P&A to say she had scheduled an appointment for Pete and their office had contracted with a sign language interpreter for the appointment.

Case Services Unit - Advocacy Representation Division

Fighting to be a Parent

Barbara, a mother with an intellectual disability, contacted P&A seeking assistance in gaining more rights with respect to her two-year old daughter. The Department of Children and Families had taken custody of her daughter, Anne, after her birth, a pattern familiar to P&A advocates.  At that time, concerns had been raised that Barbara would not be able to provide safe care for Anne, who had serious medical issues at the time. To avoid the prospect of potentially losing her parental rights, Barbara eventually made a voluntary agreement allowing Anne to be placed with a relative.

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Barbara expected that she would gradually have more opportunities to parent Anne, but this was not the case. Anne’s situation improved; she was in better health. Soon, she was a healthy, typical three-year old and Barbara wanted to assume her parental role. The relative currently caring for Anne disagreed and told her that if she pursued her parental rights, she would not be able to continue to visit her daughter.  She contacted P&A for help. 

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The P&A advocate worked with Barbara to develop allies who could help her gain custody of her daughter.  They looked for people in Barbara’s life who could speak credibly and positively about her parental skills and potential.  Barbara’s support staff from the Department of Developmental Services and the relative caring for her daughter were all very distrustful about her ability to parent a child. P&A helped Barbara connect with a new agency that had experience supporting parents with disabilities.  This agency assigned a positive and supportive mentor who could supervise Barbara’s visits with Anne.  P&A also assisted Barbara as she navigated the court system to finally gain visitation rights with the supervision of her mentor.  The visits served two purposes: they satisfied Barbara’s immediate wish to have more quality time with Anne and provided neutral observers who could watch her interaction with her daughter.  The mentor’s observations revealed that Barbara was an exceptionally caring, responsible and cautious mother. The visits continued creating a significant body of positive evidence.  This information was needed to support Barbara’s argument that she should become Anne’s primary caretaker.

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Barbara is still in the midst of the greatest and most important fight of her life.  Even so, the experience has empowered her to help other parents in similar situations. With P&A support, she traveled to two national conferences to talk about the need to support parents with intellectual disabilities, and recently became a member of the Board of Directors for The Association for Successful Parenting. 

Case Services Unit - Advocacy Representation Division

Jake is a college student with a bright future.  He also has a hearing impairment and cerebral palsy.  He was frustrated because the Bureau of Rehabilitation Services (BRS) would not agree to pay for classes at a college in another state. While BRS supported Jake’s goal of getting a business management job, they would only pay the rate of tuition listed in the agency’s policies.  That rate is based on the tuition at Central Connecticut State University and does not take into account specialized services available at other colleges.  Jake specifically requested an out of state college because it provided disability related services that he needed for success in his academic program, such as instructors who know sign language and access to related services such as captioning.

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The P&A advocate reviewed all BRS case records and policies, and obtained information about the out of state college.  She met with Jake to prepare him for the presentation of his case at BRS.  Jake had tremendous advocacy potential in presenting his case but lacked confidence.  The advocate, however, thought it would make a better impression on BRS personnel if Jake presented his own case. 

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Jake and the P&A advocate reopened communication with BRS, arguing that Jake’s case met all the requirements for a waiver of the established tuition policy.  Jake actively participated in the discussions and provided all information in a timely manner.  BRS agreed to conduct a financial analysis of the case and made a new determination on fully funding Jake’s matriculation at an out of state college.

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This case was successful on many levels.  Jake prevailed in his request for BRS to fund the out of state college. Most importantly, however, he gained confidence in his own advocacy skills.  Jake sent a note to the P&A advocate indicating that he will never forget P&A as he learned how to effectively advocate for himself.

John, a resident of a residential care home, was hospitalized in the psychiatric unit of a local hospital.  When he was preparing for discharge, the residential care home told the hospital that he could not come back.   John, with the help of his social worker, contacted P&A.  The case was assigned to an advocate who immediately intervened and advised the residential care home that they cannot simply refuse to take a resident back.  The residential care home continued to refuse to allow John to return.  The advocate advised them of their legal obligations, including pointing out that refusal to allow John to return is a violation of the law.  The advocate also advised the manager of the residential care home that a complaint would be filed with the Department of Public Health if they refused to take John back. As a result of P&A’s persistent advocacy, the residential care home readmitted John within a few days.

An Appropriate Education

Matthew, age 14, and Michael, age 8, are brothers.  Both boys have Down syndrome and intellectual disabilities.  Despite receiving special education services, the boys had no way to effectively communicate with others, and neither child was experiencing academic success.  Their parents had fought for years to obtain the kind of assistive technology and supports their boys needed, even seeking outside evaluations and treatment independent of the school system.  Despite their best efforts, the boys remained without an effective way to communicate, did not develop intelligible speech, had minimal literacy skills, and made no friendships with peers their age.   From year to year their Individualized Education Program (IEP) goals and objectives remained unmet and virtually unchanged.

After becoming increasingly frustrated with the services the school district was providing, the family contacted P&A.   An educational advocate worked with the family to develop a strategy to address their disagreement with the self-contained program and insufficient services that the district had been offering.  The advocate identified that the district had failed to provide a Free Appropriate Public Education (FAPE) in the Least Restrictive Environment (LRE), and that neither boy had been provided with the full array of supplemental aids and services they needed in order to make meaningful progress, and derive benefit from their education.  Although initial opposition to the family’s requests was strong, the parents and P&A advocate succeeded in obtaining agreement to have independent evaluations conducted in all requested areas.   The evaluations generated comprehensive and specific recommendations for a multi-modal treatment approach.

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As a result of the parents partnering with P&A, both boys now have the assistive technology  and supports they need to communicate, make educational progress, become included in their school community, and develop friendships among their peers.  Their IEPs contain comprehensive goals and objectives, with meaningful supports and accountability regarding progress.   The boys’ parents have also benefitted, gaining knowledge and confidence in their ability to be strong and effective advocates for their sons.  The educational team itself has become a functional and positive working partnership, conducting productive meetings with on-going, open, and respectful communication between the school, the family, and administration.