The Office of Protection and Advocacy for Persons with Disabilities
2006 Annual Report
Message from the Executive Director and Advocacy Board Chair
James D. McGaughey, Exec. Dir.
Eileen Furey, Ph.D., Chair Advocacy Board
We are pleased to provide this annual report summarizing the activities of the Office of Protection and Advocacy for Persons with Disabilities for 2006. As in previous years, this annual report contains basic information about P&A’s operations, and, hopefully, also captures something of the passion with which staff and Board members approach our work. We have included some stories about people who turned to us for assistance because, in a real sense, those stories tell more about what we do and how we do it than numbers, graphs or charts ever can.
As required by State statute, we also list what we see as some of the major issues currently affecting people with disabilities in Connecticut. It is gratifying to report that we are already taking action with respect to many of these issues, and, based on priorities established by the Board, have plans for responding to others. It is also interesting to note that one of those issues - including people with disabilities in emergency preparedness planning - is a relatively new addition to what has, until recently, remained a fairly consistent list of disability rights issues. Preparedness planning came to the fore in the wake of Hurricanes Katrina and Rita. It is not really "new". Studies and reports issued by academics and national organizations have long identified inadequacies in preparedness planning for people with disabilities. But, awareness of this need is now beginning to grow, offering new opportunities for collaborative problem-solving and community building. As with so many disability rights issues, the fundamental goals expressed in P&A’s motto - full citizenship, equal justice and genuine belonging - play out in these processes. Over the past year, much of P&A’s time and energy has gone into these efforts. We look forward to making continued contributions, and urge other advocates to do likewise.
Emergency Preparedness for People with Disabilities
Equal opportunity is the cornerstone and goal of civil rights. And during a time of emergency or disaster, when people are at their most frightened, uncertain and vulnerable, equal opportunity is a planning strategy that saves lives. The experience for people with disabilities living in the affected areas of Hurricane Katrina was disastrous. News reports and first person accounts indicate that there was virtually no systematic planning for the rescue, evacuation and treatment of people with disabilities. Not one federally provided emergency trailer was accessible. There was little accessible transportation. Would the response have been different in Connecticut? We don’t know. But we can learn from what happened there to ensure that it will never happen here.
For the past year, P&A has been collaborating with the Department of Emergency Management and Homeland Security, the Department of Public Health, and individual municipalities to develop a comprehensive planning approach built upon the principle of universal access. This is a vastly different approach than the typical tactic that integrates ‘people with special needs’ into a larger planning effort. The term "special needs" unfortunately suggests that accessibility is a peripheral issue; additionally, it often implies that people with disabilities are ‘collected’ in facilities rather than living alone or with friends or family. The term ‘universal access’ positions accessibility at the center of consideration, rather than off to the side. No one is forgotten or left out when planning is universal in scope. And, considering that any disaster will produce an unknown number of people with disabilities, universal access is the only planning goal that makes sense.
Using the lessons learned from Hurricane Katrina, P&A and the Disability Collaborative Network created and published a guide on disaster planning for people with disabilities.
- In its emergency management collaboration with other entities, P&A representatives have focused on a number of issues, including:
- The participation of people with disabilities in state and local planning efforts. Such participation will ensure that misleading stereotypes do not dilute the effectiveness of emergency plans.
- The availability of accessible shelter and the design of non-discriminatory shelter admission policies.
- The integration of accessibility into all planning topics, rather than the isolation of accessibility as its own planning topic.
- A protocol for reuniting people with disabilities with their service animals in the event of separation.
- The implementation of optional emergency response registration for people with disabilities.
- Increased attention to the non-structural aspects of accessibility, such as effective communication for people with sensory and speech disabilities and policy modifications that ensure equal opportunity.
- Development of guidelines for people with disabilities that encourage personal readiness and responsibility.
Case Services Unit – Information and Referral
During the 2006 fiscal year, 9566 individuals with disabilities, their family members, and interested parties contacted P&A or its subcontractors for assistance. Of these, 8,457 received information, referral, or short-term assistance. The remaining 1109 individuals received a more intensive level of advocacy representation.
P&A’s Information & Referral Advocates answered 651 housing questions related to fair housing issues, landlord tenant disputes, accommodations, rental denial, or termination, and zoning. They also responded to questions concerning personal assistance services (350), healthcare (324), education (289), abuse and neglect (278), employment (263), rights violations (260), access to government programs and services (234), financial entitlements (212), rehabilitation services (133), architectural accessibility (114), transportation (87), and assistive technology (85). Callers also contacted P&A with concerns about issues including guardianship, recreation, voting, and childcare.
P&A received a call from Mary, a woman with severe arthritis who was facing eviction because she was not able to clean her apartment. She was receiving Medicaid for the Working Disabled, a program that allows certain working people with disabilities to receive Medicaid benefits. She had been removed from the program because she fell 2 months behind on her monthly $77 premium. One of her medications cost $800 per month and she no longer had prescription coverage to pay for it. The information and referral advocate reviewed the requirements of the program and calculated Mary’s yearly earnings, finding that the premium had been set far too high for Mary’s income. The advocate spoke to several workers at the Department of Social Services (DSS), the agency that administers the Medicaid for the Working Disabled. After reviewing the financial information, DSS determined that she never should have had any premium at all. She was immediately reinstated. In case you were wondering if she was ever evicted, the answer is no. The advocate gave Mary some additional referrals and the caller will be closing on her new condo very soon.
Jane, a woman who is deaf, contacted P&A after entering an inpatient treatment facility where she was seeking assistance for a substance abuse problem. Upon entering the eight day treatment program, she requested an American Sign Language interpreter. Just as they had done many times in the past, staff denied Jane’s interpreter request and cut her treatment stay to only 4 days. She spent 4 days going to groups and not being able to understand a word or participate in the treatment process. The P&A advocate gathered the information from the family and immediately spoke with a P&A attorney. Because the issue was time sensitive, the attorney quickly contacted the facility to inform them of their responsibility to provide an interpreter under the Americans with Disabilities Act. With continued follow up from P&A, the program provided an interpreter and Jane finally got the appropriate treatment for both her inpatient stay as well as her follow-up Intensive Outpatient Program.
Case Services Unit – Advocacy Representation Division
Advocates assigned to the Advocacy Services Division protect the rights of adults and children with disabilities living in institutions and community-based residential programs. They also intervene on behalf of groups and individuals such as children with disabilities who are experiencing difficulty obtaining appropriate educational supports; adults needing assistance with becoming employed or maintaining employment; people with disabilities seeking redress for issues related to voting, assistive technology, housing, programmatic and structural accessibility; and residents of Southbury Training School. Case services staff attorneys seek administrative or judicial remedies involving discrimination based on disability. The Advocacy Services 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 16 of this report.
P&A advocates and attorneys addressed more than 630 issues while providing representation to 559 individuals with disabilities. Of the 559 individuals who received advocacy or legal representation, 296 had mental illness and 141 had mental retardation. Other disabilities of the individuals served include physical/orthopedic impairments (55), traumatic brain injury (49), emotional/behavioral (48), ADD/ADHD (32), learning disabilities (29), deaf/hard of hearing (27), autism (24), blindness/visual impairments (18), cerebral palsy (16), neurological impairments (16), respiratory disorders (14), heart/circulatory conditions (13), speech impairments (13), substance abuse (10), multiple sclerosis (9), diabetes (9), epilepsy (8), Tourette Syndrome (3) and other disabilities (31). The disabilities of 49 individuals were unknown.
Adrienne, an 18 year old young woman with an intellectual disability, was preparing for adult life. She was trapped in an inadequate school-based program of services that denied fulfillment of her dream of independence. Adrienne and her family contacted P&A for assistance with the school system. An educational advocate from P&A worked with Adrienne and her family to assert her rights under the Individuals with Disabilities Education Act (IDEA). They overcame stiff resistance to obtain an independent educational evaluation from the school. The expert evaluator designed a set of coordinated activities that provided Adrienne with an opportunity to receive the skills necessary for independence. Adrienne’s Special Education Director was so impressed with the independent expert’s recommendations that she not only provided appropriate services to Adrienne but used it as a model to develop the school’s own program in district for other students in their system. The provision of transition services for students like Adrienne has created a culture of reform and a model for other systems in the state.
Case Services Unit – Advocacy Representation Division
Mark contacted P&A for assistance with the Social Security Administration (SSA) after receiving several letters about overpayments and the need to garnish his SSA benefits. Because Mark is deaf and his primary language is American Sign Language (ASL), it was difficult for him to understand the letters. Mark went to SSA on several occasions and requested an interpreter to help explain the problem. Social Security never provided an interpreter and Mark’s benefits decreased. He still did not understand why! P&A, with the assistance of an interpreter, explained that the letters indicate that Mark has more than $45,000 in overpayments and assisted him in completing paperwork, securing documents and preparing for an appeal of the overpayments before an Administrative Law Judge. P&A made opening and closing statements and presented evidence concerning ASL vs. English and the denial of interpreters by SSA. Because Mark was denied effective communication by SSA, the judge rendered a favorable decision and waived the entire overpayment!
In summer 2006, P&A began a project to educate people with disabilities living in Residential Care Homes (RCH). A poster describing the statutory rights of RCH residents was distributed to RCHs in Middlesex, Hartford, New London and New Haven counties. A P&A advocate provided training on RCH rights at more than 40 homes through attendance at House and Resident Council meetings. Because of his work in the homes, many residents have requested advocacy assistance with problems they are experiencing. Since the project began, he has been actively advocating for seven (7) residents who have issues involving their rights at the facility.
Anne, a woman with mental illness, contacted P&A for assistance with readmission into a local Nursing Program. She withdrew from the program because she had not received appropriate accommodations and was in danger of failing. Anne really wanted to pursue her nursing degree and sought help from her local mental health authority (LMHA). The LMHA assisted Anne with a letter seeking readmission to the program. Anne did not receive a response from the college and contacted P&A. The P&A advocate contacted the program to schedule a meeting and review the file. The disability coordinator created multiple barriers to accessing records and meeting to discuss readmission. The advocate, concerned that classes would be starting soon, requested the assistance of a P&A attorney who wrote a letter to the Dean of the college. The Dean requested a meeting with Anne and the advocate. During the meeting, Anne expressed her concerns with the disability coordinator and not receiving assistance with tutoring services. The Dean agreed to do an investigation of the disability coordinator and nursing program staff. More importantly, Anne received a letter of readmission and is on her way to successfully completing the program.
Case Services Unit – Legal Division
The Legal Services Division provides legal advice and representation to selected agency clients. Staff attorneys also represent individuals and groups seeking administrative or judicial remedies involving discrimination based on disability. Other legal division activities include consulting with outside attorneys and members of the public on questions of disability law; conducting presentations about disabilities at seminars and conferences; and preparing comments on proposed state and federal regulations and policies. During the year, the P&A legal unit provided individual and systemic representation and monitoring on a number of legal issues including, but not limited to, violations of the Americans with Disabilities Act in prisons, recreational settings and nursing homes; proper mental health treatment for prisoners in Connecticut’s correctional system; educational programming for children with disabilities; the use of pepper-spray in hospitals; and appeals of building code waiver denials. P&A prevailed in two federal lawsuits granting P&A access to non-residential facilities providing care and treatment for individuals with mental illness and to peer review records requested under its PAIMI program.
P&A wins terrific victory for special education students and their families!
In 2004, parents of students with disabilities attending the Hartford Transitional Learning Academy (HTLA) contacted P&A with a variety of concerns about the lack of appropriate academic and mental health supports for their children. They were also concerned that the restraint and seclusion practices of the school were abusive. P&A, in conjunction with the Office of the Child Advocate, began an investigation of HTLA but were denied access to the facility and the school records. P&A filed a case in federal District Court. In 2005, the agency received a favorable decision upholding the agency’s access rights under three of its federal statutory programs.
The City of Hartford appealed and in February 2006, the case was argued before a panel of the 2nd Circuit Court of Appeals. The appeal raised questions about whether P&A’s federal authority to investigate abuse and neglect was intended to apply to non-residential schools such as HTLA, and whether certain provisions of the Family Educational Rights and Privacy Act (FERPA) should be read to limit P&A’s access to parental contact information. Two federal agencies, the Departments of Health and Human Services and Education were invited to submit amicus (friend of the court) briefs. Filing a joint brief, both federal agencies rejected Hartford’s arguments and supported allowing protection and advocacy systems access to schools such as HTLA. The Court of Appeals agreed and wrote a sweeping opinion upholding P&A’s rights to have access to HTLA and all non-residential facilities providing care and treatment for people with mental illness; speak with students at the school; and have access to the students’ parent and guardian information.
Case Services Unit - Thinking Outside the Box
David, a 23 year old young man with mild mental retardation, has been in prison for the past four and a half years. Eligible for parole over 3 months prior to P&A’s involvement, David was still in prison. The reason? There was no place for David to live that would provide him with adequate supports. Because of the nature of his offense and his cognitive needs, no residential program was available or willing to provide him with a home and supports. Prior to his arrest, David had been receiving special education programming and was eligible for services from the Department of Mental Retardation (DMR). Because of his imprisonment, he was no longer on the active list for services and his parole officer did not know what to do!
David’s mother contacted P&A for assistance. The P&A advocate, working in partnership with Mom, attended a series of meetings that included the DMR case manager and the parole officer. The group worked to brainstorm solutions and develop an action plan so that David could be released. Through a connection at her church, David’s mom found a small church-run half-way house in Hartford willing and able to provide the structure and services that David needs to successfully live outside the prison environment.
The story does not end here. What is the next challenge? David needs medical and financial benefits and then an opportunity to receive training and work toward gainful employment. The advocate has already approached the DMR case manager and will continue to pursue Family Support funds and other services to get David started.
During a recent visit to tour the Correctional Institution, P&A advocates met John while being shown his cell. The cell is considered accessible for someone with a physical disability because of a grab bar next to the toilet. John’s right arm is atrophied due to a stroke. Because the grab bar is on the right side of the toilet, he was not able to use it effectively, rendering the cell inaccessible for him. The advocates discussed moving the grab bar to the other side of the toilet.
As the advocates continued the tour, they found that the cell next door had the reverse set up, with the grab bar on the left. It was being used by a prisoner who uses a wheelchair but has the use of both arms. After speaking with him, advocates asked Correctional staff if the two prisoners could simply switch cells as an accommodation to John’s disability. This simple, no cost solution was performed the next day allowing both John and the other prisoner to have a cell that meets their accessibility needs.
P&A’s Legislative and Regulations Specialist (LRS) tracks legislative proposals that may affect the rights of persons with disabilities in Connecticut, provides training and technical assistance on public policy and the legislative process, and develops proposals to protect the rights and advance the interests of persons with disabilities. During the legislative session, the LRS publishes a weekly Legislative Update that is available through e-mail and on the P&A website. The LRS also compiles an annual Legislative summary of disability related Public Acts passed during the previous legislative session. Information on legislation affecting people with disabilities can be found on P&A’s website () under the “Legislative Information” section.
During the 2006 Connecticut Legislative Session, P&A proposed or strongly supported legislation that further enhances protections for persons with disabilities by giving the Executive Director of P&A the statutory authority to establish an advisory board to advise him on structural and programmatic accessibility issues (Public Act 06-56); changing Connecticut’s unemployment statutes to allow benefits for individuals who can only perform part time work (Public Act 06-171); and creating an autism pilot program within the Department of Mental Retardation (06-188).
P&A also provided testimony and/or monitored legislation potentially affecting the lives of people with disabilities in areas such as adoption of the report of the Commission on Prison and Jail Overcrowding (Public Act 06-193); allowing psychiatric hospitals to conduct competency assessments of criminal defendants and identify more individuals for voluntary treatment or civil commitment (Public Act 06-36); consolidation of statutory mechanisms for advanced health care decision-making (Public Act 06-195); and requiring the Department of Mental Retardation to report on the potential renaming of the Department. (Public Act 06-92).
During its 2006 session, the Connecticut Legislature passed Public Act 06-56 authorizing creation of an Access Advisory Board at P&A. The Board will function as a strong, well-informed voice to assist P&A in ensuring that all building accessibility requirements are met and that the built environment offers increasingly greater universal access. The Board will be comprised of members who have expertise in accessible design and technology, construction techniques, legal requirements, and code interpretation, as well as considerable practical experience living in and using accessible structures. The Access Board will fulfill critical functions by providing expertise in assisting P&A with evaluating accessibility waiver requests; reviewing code non-enforcement complaints; providing education and policy analysis regarding accessible design standards; evaluating construction and alteration plans; issuing advisory opinions; providing expertise and training on reconciliation of code requirements with other sources of standards and requirements; and recommending updates and other improvements to the State Building Code.
Abuse Investigation Division
P&A’s Abuse Investigation Division (AID) was established in 1985 (Connecticut General Statutes §46a-11 et seq.) to investigate allegations of abuse or neglect by caregivers of persons with mental retardation, ages 18 through 59. AID has the authority to conduct direct investigations involving the Department of Mental Retardation (DMR) or any other service provider. Most allegations involving clients of the mental retardation service system are directly investigated by the service agencies with P&A’s AID monitoring the internal investigation. AID conducts primary investigations for allegations involving people living at home or otherwise outside the scope of the mental retardation service system.
AID received 1,160 allegations of suspected abuse or neglect of persons with mental retardation, resulting in 1,089 cases. P&A staff investigated or monitored 957 cases. One hundred and thirty two (132) allegations did not meet the statutory requirements for P&A investigation. The 1,089 cases involved 1,248 victims: 544 females and 704 males. Of the 957 cases accepted for investigation or monitoring, more than 50% involved Neglect (547) while 20% were allegations of Physical Abuse (217). Other case types included Injury of Unknown Origin (73), Sexual Abuse (37), Abuse/Neglect (33), Death due to Abuse/Neglect (13), Abuse (6), and Willful Deprivation (3). Twenty-eight (28) cases involved other types of allegations.
AID received a call about Robert, a gentleman with mental retardation who had been complaining of tooth pain for over 4 months and had not received any type of dental care. His teeth were encrusted with a thick covering of plaque. P&A investigators interviewed Robert and his mother and learned that Robert’s teeth hurt, that he had only seen a dentist once in his life and that visit was a very long time ago. Robert’s mother does not bring him to dental and other medical appointments because she does not drive and cannot leave her elderly mother home alone. Although Robert’s case manager from the Department of Mental Retardation (DMR) had visited the home the previous week, he did not offer any transportation assistance for medical appointments. Robert’s mother said that he could benefit from the services of a home health aid for hygiene assistance. He also needed transportation to medical appointments. AID determined that Robert was not receiving necessary services and substantiated neglect. The AID investigator wrote a protective service plan requiring DMR to assist Robert securing medical and dental care, transportation and home health supports. As a result, Robert has been evaluated by a dentist and with transportation provided by DMR has returned to the dentist 3 times in a two month period for follow-up care.
Community Outreach and Training
P&A sponsored or participated in 113 training events including radio shows, presentations, workshops, conferences, and resource fairs. Approximately 3,935 individuals received training on topics that included P&A programs and services, special education rights, the Americans with Disabilities Act, vocational rehabilitation and employment, assistive technology, disability rights and resources, legislative advocacy, voting rights, emergency preparedness for persons with disabilities, building code accessibility, instructional materials access, and investigation procedures. Information was disseminated to more than 4,800 people at 13 resource fairs. Over 10,000 publications and P&A program brochures were distributed.
The P&A web-site, www.ct.gov/opapd, received 512,224 hits during the 2006 fiscal year. The site was continuously updated with current disability news and information, legislative updates, P&A self-help literature, P&A program descriptions, links to disability-related websites, and reports on developments in the field of disability rights. The site allows persons with disabilities, families and others to request information and complete a survey about issues affecting people with disabilities in Connecticut.
P&A staff provides community outreach and support to new and existing community-based disability advocacy initiatives in geographically diverse areas of Connecticut. During the 2006 fiscal year, P&A conducted outreach activities in minority communities and assisted grassroots organizations by providing training and assistance on organizational and membership growth, board development and self advocacy strategies. Staff also continued to participate on the Connecticut Family Support Council including a planning role for Connecticut’s Family Day activities.
P&A continued its financial and staff support to African Caribbean American Parents of Children with Disabilities (AFCAMP) and Padres Abriendo Puertas (PAP), organizations that support minority parents of children with disabilities in Connecticut. In January 2006, outreach staff began to support Connecticut Kids as Self Advocates (CT KASA), a self advocacy group of youth with disabilities. The agency also continued to support the Connecticut Women and Disability Network (CWDN), the Americans with Disabilities Act Coalition of Connecticut (ADACC), and ADAPT.
What happens when you gather 22 young people from 8 states across the nation, 15 support staff, 35 volunteers, 4 vans worth of luggage and supplies and thousands of dollars worth of food in a beautiful camp setting on Memorial Day weekend? Amazing things, that is for sure!!! And that’s exactly what occurred last spring at Camp Harkness in Waterford as the members of CT KASA and National KASA met for Building a Common Ground, a retreat planned, implemented and administered by members of the two organizations. P&A provided additional support for the retreat as the members met their overall objective of "ensuring youth-driven activities and direction of projects; to be able to learn and teach how to be youth-led."
Fatality Review Board
The Executive Director of P&A is the chair of the Fatality Review Board (FRB) for persons with disabilities. Established by Executive Order 25, the FRB is charged with conducting investigations into the circumstances surrounding the deaths of DMR clients "which, in the opinion of the Executive Director, warrant a full independent investigation". The FRB also has five (5) Governor-appointed members who are drawn from medical, law enforcement, and human service professions.
Between October 1, 2005 and September 30, 2006, one hundred and eighty-two (182) deaths were reported to P&A by DMR. Of these, ninety two (92) were men, and ninety (90) were women. The largest number of deaths, or fifty (50), was attributed to cardiac arrest, cardiopulmonary arrest, cardiovascular disease, or congestive heart failure. Other causes of death listed, in rank order, include thirty-one (31) by cancer; twenty-four (24) by pneumonia; twenty-four (24) by respiratory arrest or respiratory disease; nine (9) by renal failure; seven (7) by septicemia; five (5) as the result of a terminal illness process; four (4) by seizure disorder; and three (3) by Alzheimer’s disease. In addition to the major causes of death listed above, two (2) were attributed to acute illness; two (2) to age-related factors; two (2) to metabolic disorders; two (2) to Pancreatitis; two (2) to surgical complications; one (1) to a bowel obstruction; one (1) to cerebral hemorrhage; one (1) to diabetes; one (1) to gastrointestinal disease; one (1) to infectious disease; one (1) to an internal hemorrhage; and one (1) to a stroke. Three (3) causes of death are listed as "unknown".
Deaths that were accidental or not anticipated include one (1) by a drug overdose and four (4) by choking or aspiration of food. Twenty-seven (27) cases were subject to in-depth discussion, monitoring and review by the FRB. Additionally, during the period between October 1, 2005 and September 30, 2006, the FRB reviewed the circumstances surrounding thirteen (13) deaths where there was reason to suspect that abuse or neglect may have been a contributing factor.
In 2006, the Fatality Review Board (FRB) issued a report on its activities during 2004-2005. The report identified many recurring issues which merit close attention by providers, service planners and policy makers. Based on these issues, the FRB made the following recommendations:1) Significantly improve health care coordination for individuals living in the community who have chronic medical problems; 2) Develop health and wellness education programs specifically designed to reach people with intellectual disabilities; 3) Avoid nursing home placements; where possible, establish a network of preferred nursing home providers to meet short-term rehabilitation needs; 4) Clarify expectations for nursing supports in residential and day programs; 5) Provide detailed, timely information regarding untimely and un-witnessed deaths to the Office of the Chief Medical Examiner; and 6) Increase staff support to the FRB.
Fiscal Facts and Figures
In the fiscal year ending June 30, 2006, P&A had a total operating budget of $4,018,942. Of this, $2,406,165 (60 %) was state funding and $1,612,777 (40%) was federal funding. Personal services expenditures comprise 85% of P&A's General Fund Budget with an additional 15% expended on contracts, outside services and necessary expense items including supplies, equipment, telephone, postage, and printing.
Major Issues Affecting people with Disabilities
State law requires P&A to report annually on the "status of services for persons with disabilities" and to "make recommendations, administrative and legislative, concerning the protection of the rights and welfare of persons with disabilities living in Connecticut." This listing reflects problems presented by people who contact P&A for assistance, reports from public forums and other discussions between agency advisory groups and consumers, and the observations of agency staff who investigate and advocate on behalf of our clients.
Access to Oral Healthcare
Many people with disabilities have low enough incomes that they are eligible for Medicaid health and dental insurance. But many Medicaid recipients are unable to find providers who will accept Medicaid dental insurance. In many instances the reimbursement rates offered by Medicaid do not cover the actual expenses incurred by providers. Also, Medicaid reimbursements are better for major procedures like tooth extractions than for low-cost, preventive care like semi-annual cleanings and fillings when needed. The lack of oral healthcare providers who accept Medicaid is compounded by the lack of experience many providers have with people with disabilities.
People with disabilities have the right to go to their local emergency shelter with their neighbors, friends and family. Architectural access (such as making shelters—including bathrooms—wheelchair accessible), backup generators to power wheelchairs and keep refrigerators used to store medicine cold, and trained staff who are comfortable dealing with people with disabilities are a must. Work must continue to ensure that all emergency shelters can accept and help people with various disabilities including physical disabilities, deafness or hard of hearing, psychiatric disabilities and cognitive disabilities.
The Use of Restraint & Seclusion in Public Schools
In 1999, the state legislature banned the use of restraints and seclusion, except in emergency situations or as part of an individual person’s treatment plan. The ban applied to people of all ages in institutions and facilities and even applies to regional education service centers. But the ban and restrictions do not apply to local schools. Children are being put in "safe rooms", "time out rooms" and "seclusion rooms" in many towns across the state, in order to "manage" the child’s challenging behavior. School systems need to embrace alternative methods of helping children with challenging behaviors.
The shortage of affordable, accessible housing is still keeping thousands of people unnecessarily institutionalized in psychiatric hospitals and long term care facilities. Federally subsidized housing can be designated "elderly only" and non-elderly persons who need safe, affordable, accessible housing are not welcome. Affordable and accessible two and three bedroom apartments for families are very difficult to find.
Corrections System as Default Service Provider
For an estimated 3,000 people with psychiatric disabilities, and an uncounted number of people with cognitive disabilities, the corrections system has become the default provider of residential services. Many of these individuals wind up in jail as a result of gaps in existing mental health and mental retardation services; they often do not fare well in prison environments, most remain incarcerated longer than non-disabled individuals charged with similar offenses, and assistance in transitioning to community life is often minimal - setting the stage for repeat arrests.
The lack of reliable, affordable, accessible transportation prevents many people with disabilities from being able to seek employment or continue their education or get adequate healthcare. Just as important, the lack of such transportation makes spontaneous trips to the mall or to the movies—the kinds of community interaction many people take for granted—all but impossible. The lack of transportation limits the ability of people with disabilities to truly integrate into the greater community.
The expectations for special education students, particularly in troubled urban school systems, remain dismally low, and inclusion is still not a reality for many children. Inclusion, and the expectation that all students will do the very best they can, should be adopted as official state policy. The state needs to formally recognize that sometimes the misbehavior of children is directly related to their disability.
People with disabilities continue to have higher rates of unemployment and underemployment than the general population. There is a need for greater availability of information about both legal rights and workplace problem-solving resources. Both the Board of Education and Services for the Blind (BESB) and the Bureau of Rehabilitation Services (BRS) need to continue to emphasize employability and help clients learn skills to become gainfully employed.
Nursing Home Placements
Over 2,000 people with primary psychiatric diagnoses remain stuck in Connecticut nursing homes. But there are also increasing instances where people with a primary psychiatric diagnosis who need skilled nursing care are denied nursing home admission because of their psychiatric disability. Nursing homes should not be allowed to simultaneously warehouse people with mental illness and also refuse services to people who truly need skilled nursing care based on their mental illness.
Access to Community Infrastructure
Access is still limited. Many towns and cities are not fully compliant with state and federal accessibility requirements. And there is often confusion about what is required—because there are significant differences in state and federal requirements. In 2006 the legislature authorized the Executive Director of P&A to establish an accessibility advisory board comprised of design professionals, people with disabilities, people whose family members have disabilities, and anyone else the director believes would provide valuable insight and input on matters relating to accessibility. This is a good first step, but Connecticut still lacks a streamlined complaint and enforcement process that could ensure better accessibility.
Abuse & Neglect
Requirements for reporting and investigating abuse and neglect are uneven across service systems. There are mandatory reporters regarding child abuse who must report to the Department of Children and Families and mandatory reporters regarding abuse and neglect of the elderly who must report to the Department of Social Services. But there is no mechanism to compel reports of suspected abuse or neglect of non-elderly adults with disabilities other than mental retardation. The state should consider a reporting and investigation mechanism to ensure the safety of non-elderly adults with disabilities other than mental retardation. Also, the lack of accessible oral healthcare (see above) rises to the level of abuse and/or neglect when people with disabilities end up with severe infections, loose teeth and otherwise suffer ill health because they could not get preventive dental care.
Federally Mandated P&A Programs for Persons with Disabilities
Annual Report in Adobe file, printed on 11 x 17 paper (.pdf 887)
Protection and Advocacy for Individuals with Developmental Disabilities
42 U.S.C. §15001 et seq.
PADD establishes basic requirements for all P&A programs. These include independence from service systems; access to client records; authority to conduct investigations and to pursue legal and administrative remedies on behalf of clients of the DD service system; capacity to provide information and referral services; and to educate policymakers about issues of concern to persons with disabilities.
Client Assistance Program
29 U.S.C. §732
CAP provides consultation and advocacy assistance to applicants and recipients of services provided under the federal Rehabilitation Act. CAP’s primary focus is helping clients of the vocational rehabilitation service system, most notably the Bureau of Rehabilitation Services (BRS) and Board of Education and Services for the Blind (BESB).
Protection and Advocacy for Individuals with Mental Illness
42 U.S.C. §10801
PAIMI investigates allegations of abuse and neglect and other complaints raised by people with mental illness who reside in supervised facilities and in the community. PAIMI also advocates for appropriate discharge plans, consumer choice, and respectful, relevant supports.
Protection and Advocacy for Assistive Technology (PAAT)
29 U.S.C. § 2001 et seq.
PAAT provides consumer education and representation in an effort to expand the availability of assistive technology devices and services for people with disabilities.
Protection and Advocacy for Individual Rights (PAIR)
29 U.S.C.§ 794e
PAIR is authorized to provide consultation and representation for people with disabilities who are not eligible for P&A services under one of the other federally defined P&A programs.
Protection and Advocacy for Beneficiaries of Social Security(PABSS)
42 U.S.C. §1320B-19
20 CFR 411.635(P.L. 106-170)
PABSS assists beneficiaries of Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) who need information, advice, advocacy or legal services to secure, maintain or regain employment.
Protection and Advocacy for Help America Vote Act (PAVA)
42 U.S.C. §15301 et. seq.(P.L. 107-252, Sec. 291)
PAVA is charged with expanding participation of people with disabilities in voting processes and protecting their rights.
Protection and Advocacy for Persons with Traumatic Brain Injury (PATBI)
42 U.S.C. § 300 d. -51
PATBI provides protection and advocacy services to individuals who have brain injury.
Content Last Modified on 10/9/2009 11:13:42 AM