Annual Report 2012
Message from the Executive Director and the Advocacy Board Chair
Investigating and Remedying Abuse and Neglect
Abuse Investigation Division: Being treated with respect and dignity is a fundamental right for all human beings. Unfortunately, however, abuse and neglect can occur in all types of settings – institutions, community programs and even in family homes. When there is reason to suspect that people with disabilities are being subjected to abuse and neglect, P&A can investigate, find the facts, and oversee corrective measures.
Fatality Review Board: was established to bring greater independence and oversight to the fatality review process for people with Intellectual Disability who receive services from the Department of Developmental Services (DDS).
Responding - For people who are uncertain about their rights, or who are facing daunting barriers, important life decisions, confrontations with powerful systems or even instances of outright discrimination, P&A provides empowering information, straight answers and short-term problem-solving assistance.
Representing Individuals - Sometimes it helps to have an ally, like a P&A advocate or attorney in your corner.
Advocacy Representation Division - Advocates assigned to the Advocacy Representation Division protect the rights of adults and children with disabilities living in institutional and community settings.
Legal Representation - The Legal Services Division of the Case Services Unit provides legal advice and representation to selected agency clients.
Pursuing Systems Change - Responding to the needs and issues that individuals with disabilities bring to P&A helps identify persistent civil rights enforcement issues and systemic barriers to inclusion, participation and contribution. P&A pursues systems change strategies and shares what it learns with opinion leaders, elected officials, courts and with members of the public.
Reaching and Teaching - People with disabilities and families who are isolated by geography, communication barriers, cultural boundaries or just the overwhelming demands of their daily struggles need opportunities to join with others and learn how to collectively influence the world around them.
Major Issues Affecting People with Disabilities - Connecticut General Statutes §46a-13 mandate that P&A report annually on issues affecting Connecticut citizens with disabilities.
Fiscal Facts and Figures - Personal services expenditures comprise 93% of P&A's General Fund Budget, with an additional 7% expended on contracts, outside services and necessary expense items, including supplies, equipment, telephone, postage, and printing.
Federal and State Mandated P&A Programs for Persons with Disabilities - Federal and State Program Descriptions.
James D. McGaughey Arthur L. Quirk
Executive Director Advocacy Board Chair
Arthur L. Quirk
winning team must employ both a good offense and a good defense. In the past year, there is little question that the Office of Protection and Advocacy for Persons with Disabilities has used both offensive and defensive strategies effectively.
For example, we responded successfully to an ill-advised proposal for structural consolidation with another agency; we staved off threats to certain federally funded programs while absorbing cuts and losses in others; and we coped with the retirements of several long-time staff members.
Despite those challenges, the year has also proven to be uniquely rewarding. We have been especially gratified by the disability community’s overwhelming support for the continued independence of OPA. And the dedication and effectiveness of our staff, as reflected in the statistics and stories contained in this report, has been amazing.
We also witnessed an emerging recognition amongst members of both the P&A Advisory Board and the PAIMI Advisory Council that, if P&A is to continue its independent safeguarding role, further steps are needed to “safeguard the safeguard”.
Your Board and Council began that process by convening its first-ever joint meeting and sponsoring a public presentation by leaders from the National Disability Rights Network on the history of the P&A system and the unique federal requirements and standards that apply to all P&As. Our next steps will be to convene constituent focus groups here in Connecticut and examine possible changes in governance and the role the Board plays in agency oversight.
The opportunities and obstacles facing P&A in the future will continue to be challenging. Fortunately, the vital nature of meeting those challenges is increasingly acknowledged by our citizens. We hope that the information in this annual report will advance your understanding about combating abuse and neglect here in Connecticut and the unique role we play in safeguarding the civil rights of people with disabilities.
Being treated with respect and dignity is a fundamental right for all human beings. Unfortunately, however, abuse and neglect can occur in all types of settings – institutions, community programs and even in family homes. When there is reason to suspect that people with disabilities are being subjected to abuse and neglect, P&A can investigate, find the facts, and oversee corrective measures.
Abuse Investigation Division
P&A’s Abuse Investigation Division (AID) investigates allegations of abuse or neglect by caregivers of adults with Intellectual Disability who are between the ages of 18 and 60. AID conducts primary investigations for allegations of abuse and neglect involving people with Intellectual Disability living outside the service systems. Most reports involving clients of the developmental disabilities service system are directly investigated by the service agencies, with P&A monitoring the internal investigation. AID is also mandated to investigate the deaths of persons with Intellectual Disability for whom the Department of Developmental Services has responsibility for direct care or oversight and when there is reason to believe that the cause of death may involve abuse or neglect.
Last year, AID received 1,126 allegations of suspected abuse or neglect of
persons with Intellectual Disability, resulting in 1,117 cases. P&A staff investigated or monitored 1,018 cases while 99 allegations did not meet the statutory requirements for a P&A investigation. The 1,117 cases involved 1,259 victims: 598 females and 661 males. Of the 1,018 cases accepted for investigation or monitoring, more than 51% of the alleged perpetrators were residential staff while 15% were vocational staff and more than 14% were family members. Other perpetrators included Nurses (24), Van Drivers (17), Guardians/Conservators (5) and others (44). The identity of the perpetrator was not known in 140 of the cases.
In late 2011, P&A’s Abuse Investigation Division (AID) received a report alleging that “Sandra” (not her real name), a 50 year old woman with intellectual disabilities, was being beaten and “treated like a slave” in her home by her sister, who was also Sandra’s guardian and principal caretaker. The reporter stated that the sister was preventing Sandra from attending her day program, and that she had hit Sandra with an extension cord for taking a piece of gum. A review of P&A files indicated that neglect had previously been substantiated in the home due to Sandra not receiving her prescribed medications.
In response to the December referral, P&A investigators made numerous attempts to contact Sandra at the home she shared with her sister. Attempts to schedule appointments proved fruitless as the phone was never answered, and calling card requests to contact P&A were ignored. Investigators made numerous unannounced visits to the home, but no one answered the door, even though sounds from inside the house suggested that someone was home. Meanwhile, Sandra continued to miss her day program. Eventually, the investigators’ persistence paid off: as they arrived for another unannounced visit, Sandra’s sister opened the door. She insisted that Sandra was not home, but promised that she would be there that next day.
The following day, AID investigators interviewed Sandra. They noted that she looked markedly thinner than she had at the time of their previous investigation. They also noted a large scratch on Sandra’s right cheek, and a swollen right elbow. When asked how she had sustained those injuries, Sandra stated she received them from her sister who she also said beat her regularly and hit her with a wire. Although limited verbally, Sandra indicated to investigators that she was fearful on a daily basis that she would be hit by her sister. Sandra was clearly afraid, both of staying with her sister, and, at the same time, of leaving the premises. When interviewed, the sister denied causing any injuries to Sandra, but admitted that she had struck her from time to time.
Because Sandra had apparently been assaulted and sustained injuries, and because she was in fear of further assaults and injuries, P&A investigators contacted the local police and also requested immediate protective services from DDS. Sandra was taken to the hospital for an immediate evaluation and was then relocated to a DDS Community Care Home. Physical abuse was substantiated. Sandra remains living at the Community Care Home at this time and is reportedly doing very well.
Fatality Review Board
John DeMattia, Esq.
Supervisory Assistant State's
Rocky Hill, CT
Gerard Kerins, M.D.
Patricia Mansfield, R.N.
East Lyme, CT
Timothy Palmbach, J.D. - M.S.
Capt. David Rice
Department of Public Safety
Vacancy - Medical
The Fatality Review Board for Persons with Disabilities (FRB) was established to bring greater independence and oversight to the fatality review process for people with Intellectual Disability 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 chairs the FRB. The FRB also has Governor-appointed members who are drawn from medical, law enforcement, human service and forensic investigation professions. The Commissioner of DDS or designee sits as a non-voting member. Since 2009, the Connecticut Legislature has required 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. The FRB also reviews these deaths and investigates as necessary.
The Department of Developmental Services reported 210 deaths to the FRB during the year. Thirty-eight (38) of these deaths were subject to in-depth discussion, monitoring and review by the FRB. Additionally, there were 14 deaths reported where there was reason to suspect that abuse or neglect may have been a contributing factor. FRB staff also received reports of 4 deaths from the Department of Mental Health and Addiction Services. All the deaths were reviewed and one (1) death received a more in depth review by P&A staff. FRB is currently reviewing the deaths of two individuals who committed suicide while in the custody of the Department of Correction.
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Fatality Review: How Does it Work and Why is P&A Involved in it?
For the past ten years, P&A has played a critical role in reviewing and investigating the deaths of people served by human service systems, with particular emphasis on people supported through the Department of Developmental Services. Both P&A’s Abuse Investigation Division and the State’s Fatality Review Board for Persons with Disabilities, which is supported by P&A, have contributed to this effort.
Questions of trust, blame, respect, confidentiality and fear of consequences and/or liability surround all mortality review processes, including those affecting people with intellectual and developmental disabilities. The stakes are high for everyone: for individual human beings who are trying to chart their own courses through life but who may depend, to varying degrees, on the competence and commitment of care givers to help them navigate through the world’s complexities; for families seeking answers to agonizing questions; for providers and practitioners whose reputations and ability to continue to practice their professions are on the line; and for leaders in health and human service systems who are trying to implement policies that genuinely respect personal autonomy and individual choices on the one hand, yet establish reasonable safeguards and accountability mechanisms on the other.
Ten years ago, in response to questions about the levels of accountability and trustworthiness with which its developmental services system was monitoring client deaths, Connecticut created a mortality review process which is characterized by independent checks and balances. In contrast to previous practice, the current system has both internal and external components. It assures that the death of each individual who receives even minimum levels of service through the developmental services system is reviewed, that suspected abuse and neglect are independently investigated, and that trends and systemic problems are identified so they can be addressed. After ten years of operation, a much more complete picture of the mortality experience of people with Intellectual Disability has emerged and a number of important issues have been identified. Many of those issues have been addressed while others still require action.
Also emerging is a more sophisticated understanding of what the more persistent “problems” represent. When there has been an error or significant omission which has led to an individual’s death – something that never should have happened and never should be allowed to happen again – it is tempting to respond by imposing new procedural requirements, or by mandating universal training on a particular topic, or by adding additional layers of oversight. Sometimes such responses are warranted and actually helpful. But, sometimes, the ‘problem’ is not so easily isolated and addressed; sometimes it is a symptom of an underlying issue, like the slow starvation of the State’s chronically under-funded network of community service providers over the past fifteen years; or the naïve, yet widespread assumption operating within the culture of the developmental services system that it can do little to affect outcomes once its clients become “patients” in healthcare environments. Sometimes, too, the underlying problem can be best understood as one of misplaced administrative emphasis – too much reliance on regulatory requirements, bureaucratic detail and the myth of organizational perfectibility, and too little investment in cultivating competence and renewing commitment within the “human infrastructure” that is the blood and bones of any human service. Just as Gandhi warned against “systems so perfect that nobody needs to be good", one of the most significant lessons fatality review teaches involves the critical importance of good values and a sense of shared responsibility on the part of people at all levels of the service system.
The good news is that Connecticut now has a comprehensive mortality review system, and it is clear that most – the vast majority – of deaths reviewed raise no questions about the quality of services or care. In fact, the records reviewed by the Fatality Review Board indicate that many of the individuals who died were genuinely respected, well supported, very much cared about by others, and that a number of those who had terminal conditions were able to pass away in their homes, supported to the end with dignity, respect and affection. At the end of our lives, we should all be so fortunate. Clearly there are many competent and committed caregivers supporting people with Intellectual Disabilities. But, an honest look requires that we acknowledge that too many things still go wrong, and that there are important lessons to learn by vigorously reviewing those cases. We owe it to those whose deaths were untimely to continue to pursue those lessons. In the end, a commitment to continual learning – to relentlessly pursuing an accurate understanding of what happened in each case - what worked and what didn’t, what contributed and what interfered, what needs to change – may be the most important way we can honor those people.
For people who are uncertain about their rights, or who are facing daunting barriers, important life decisions, confrontations with powerful systems or even instances of outright discrimination, P&A provides empowering information, straight answers and short-term problem-solving assistance.
In 2012, P&A advocates received 3,609 requests for information and referral, or short-term assistance from people with disabilities, their family members, and interested parties. In addition to meeting with walk-in clients, advocates handled requests for information and assistance from callers, legislators, e-mail contacts, letters and visitors to the P&A website. The largest volume of calls (642) related to Abuse or Neglect including inappropriate mental health treatment; excessive or involuntary medication administration; physical, verbal or sexual assault; inappropriate restraint; and financial exploitation. They also responded to questions concerning Housing (604), Government Benefits and Services (405), Rights Violations (434), Employment (205), Education (235), Services (118), Healthcare (147), Rehabilitation Services (115), Financial Entitlements (87), Transportation (63), Architectural Accessibility (65), Assistive Technology (37), Guardianship and Conservatorship (36), Parental Rights/Childcare (36), Insurance (30), and Recreation (9). Advocates also responded to 294 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, immigration, privacy rights, institutionalization and access to government programs.
Take a Seat
Joe contacted P&A with a question: He pays a fee to be a member of a Dave Matthews fan club, which is supposed to afford him the opportunity to purchase reserved seating at concerts in advance of regular ticket sales. He had called to reserve his tickets for an upcoming concert. All went well until he said that he has a disability and requires accessible seating. The operator told him that they would need a note from his doctor verifying his disability in order to provide those tickets. Joe’s question was: “Is that legal?” The P&A Advocate that Joe spoke with handles Information and Referral (I&R) calls like Joe’s exclusively. She was aware that recent changes in the regulations of the Americans with Disabilities Act (ADA)had taken effect just days before Joe called. Those changes included provisions addressing ticket sales to events and concerts. Ticket vendors were no longer allowed to request proof of disability at the time of purchase. With Joe’s permission, the P&A Advocate contacted the fan club, spoke with the Manager and informed her of the changes. The Manager had not been aware of the new requirements and apologized for Joe’s inconvenience. She thanked the Advocate for the information and said she would educate her staff immediately. Joe’s tickets were issued without any further problems.
In July of 2012, a man and his wife called P&A’s Information and Referral Section (I&R). They indicated that they had made a request for a ramp to be put in at the entrance to the condominium unit they owned. They told the I&R Advocate that it had taken the condominium association many months to respond to their request because, it kept telling them, the association’s attorney needed to review the request.
When the request was finally approved, the condominium association wanted the couple to sign a contract for the construction of the ramp stipulating that, once it was built, the association could perform random inspections of the ramp, and if it did not pass inspection, the cost of repairing it would be on the couple. The Advocate suspected that conditioning approval for the construction of a ramp on such an inspection provision might violate Fair Housing law. A conversation with a P&A attorney confirmed the suspicion. Because P&A’s lawyers had full caseloads, a referral was made to the Connecticut Fair Housing Center, which assigned an attorney to assist the couple. The offending “inspection clause” was removed from the contract and the ramp was successfully installed.
History teaches that civil rights are not self-enforcing, and that even well meaning, generally competent human service programs sometimes get things quite wrong. Yet, it is often difficult for an individual whose identity and needs are misunderstood, or who is experiencing discrimination, to successfully challenge powerful organizations - to “fight city hall”. Sometimes it helps to have an ally, like a P&A advocate or attorney in your corner.
Advocates assigned to the Advocacy Representation Division protect the rights of adults and children with disabilities living in institutional and community settings. In addition to providing advocacy representation and training on disability-related topics, advocates also intervened on behalf of groups and individuals, such as children with disabilities in need of appropriate planning and supports to meet their educational needs and adults with disabilities seeking assistance with barriers to becoming employed, including vocational training and discrimination. They also provided advocacy to 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 for cases involving discrimination based on disability. The Division is composed of a number of distinct federally mandated advocacy programs for people with disabilities, as illustrated on the chart on page 26 of this report.
P&A advocates, attorneys and subcontractors provided representation to individuals with disabilities for 522 disability related issues. The 431 individuals served by P&A staff experienced problems in the areas of Abuse and Neglect (97), Education (65), Rehabilitation Services (50), Rights Violations (45), Financial Entitlements (28), Healthcare (26), Government Benefits (25), Quality Assurance (22), Employment (19), Housing (14), Services (10), Unnecessary Institutionalization (9), Assistive Technology (9), Architectural Accessibility (7), Guardianship (6), Transportation (2), and Voting (2). Fifteen (15) advocacy cases involved other problems such as childcare, recreation, and parental rights.
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When Kim’s cousin called P&A three years ago, she wanted to know if there might be a way to see if Kim would qualify for supports through the Department of Developmental Services (DDS). Kim had been a victim of traumatizing sexual assaults and aggressive behavior, and had long been institutionalized within the mental health system. Her cousin realized, however, that that system did not seem to be meeting her needs: her behavior had deteriorated to the point where she had been transferred to the Whiting Forensic Division’s maximum security facility, and there seemed to be no prospect of her ever leaving that environment, much less experiencing a more normal lifestyle in a community residence. The cousin knew that Kim had been identified as having “borderline” intellectual functioning when she was a child, and that unlike the mental health service system, the DDS system did have some community providers who could work with people who had both Intellectual Disability and behavior problems. So, she thought it might be worth exploring the possibility of DDS eligibility.
When P&A got involved, Kim was at the Whiting Forensic Division, living on a unit with violent and unstable men. Because of her significant sexual trauma history, she felt very unsafe in this situation. Generally Kim kept to herself, muttering disjointedly, refusing to participate in groups and hiding under multiple layers of clothing. Getting her to shower, even occasionally, was a huge problem; she just didn’t feel safe since she had to shower in the men’s room. Assurances that men were being kept out just didn’t do much to allay her fears. Kim remained aggressive and non-cooperative. In fact, the first time the advocate came to visit her, the security officer warned her solemnly that “she is crazy, and she will hurt you.” A forced medication regimen was introduced; but the process of having her buttocks exposed while being held down to receive an injection was very traumatizing. Kim complained that she was “raped” after the procedure.
Exploring the possibility of DDS eligibility proved unproductive: no records could be found documenting Kim’s intellectual functioning level prior to the age of 18, so it would have been extremely difficult, and perhaps even impossible to establish Kim’s eligibility. This was somewhat amazing, because she had been in so many inpatient settings for most of her youth and the State of Connecticut must have paid for multiple assessments of every aspect of her troubled life during those years. But neither P&A nor Kim’s cousin gave up. Despite various setbacks and discouraging dynamics, they persisted in advocating for a totally different vision of residential supports for Kim, bringing her story up the chain of command within the Department of Mental Health and Addiction Services (DMHAS). Ultimately, DMHAS personnel at the highest level “got it”: they could see that this woman, who was only in her 40’s, could waste her life (and, potentially, millions of State dollars) in Whiting. They would have to do something new.
It took several years of advocacy, but Kim has been living free and very, very happy for the past 6 months. The pictures tell the story – she is now enjoying the simple pleasures of swinging on a porch swing, and dressing up with a friend for Halloween. She sings in her church, where her contribution is appreciated and she is accepted as a full and valued member of the community of faith. Gone are the layers of filthy clothes, the matted hair, the days alone on her bed. Her speech is making sense now, and she has great things to say, and great friends are listening. Kim has come home!
Finally, a Ramp to Everywhere
Marsha contacted P&A on behalf of her husband Edward, who had a stroke.
After many months in a rehabilitation facility, Edward came home. He was now using a wheelchair and the entrance to his home needed a ramp in order for him to return. With assistance from the State’s Money Follows the Person program (MFP), the ramp was quickly ordered and installed. It was winter and Marsha was told by her MFP contact person that they could install the ramp, but could not install a landing at the base of the ramp because the ground was frozen. She was told that the landing and a walkway would be completed in the spring. Edward came home and he was brought up the ramp into the house. But, Marsha soon realized that Edward was now trapped in their home. The ramp ended in the middle of the yard. Edward’s wheelchair was too heavy to be pushed through the grass, and no wheelchair transportation company would drive over the lawn to get him. Edward could not even go for follow-up visits to his doctor.
A P&A Advocate was assigned to assist Edward and Marsha. When the Advocate reviewed the plans with MFP staff, she discovered that they were planning to install a gravel walkway from the base of the ramp to the driveway. Gravel walkways are not considered accessible for people who use wheelchairs – they significantly increase rolling resistance, are susceptible to becoming rutted, and cannot be easily cleaned of snow and ice. Initially, MFP said that the walkway had to be gravel because the budget did not cover the cost of paving. The Advocate made numerous phone calls to various levels of MFP staff to explain that their accessible design was not at all accessible. Eventually the MFP staff acknowledged that they had built the ‘ramp to nowhere’ and gravel was not going to change that. The Advocate’s diligence paid off and the plans were revised to include accessible paving. The project was completed and now Edward has the ‘ramp to everywhere.’
All Charged Up!
Mr. Brown had a problem: the battery charger for his power wheelchair was only partially charging the battery. For two years, his wife had called the vendor to complain: The charger isn’t working; the wheelchair is stopping dead; my husband is stranded in his own house while I’m at work. “No”, she assured the vendor, “it’s nothing we’re doing wrong. The charger isn’t working!”
Unfortunately, by the time the Browns contacted P&A, the complaint period for the Assistive Technology Lemon Law was long past. In fact, the vendor was claiming that the Browns had complained about the charger only once or twice, and that the issue had been resolved. The Browns had not kept any records of their calls to the vendor and the vendor’s records showed very few contacts. Nevertheless, the P&A advocate asked that the vendor
do a home visit. The result was a report that placed blame on the electrical outlet the Browns were using. They tried a different outlet, but the result was the same: only a few hours (or less) of charge in the battery. Two in-shop evaluations followed, neither of which found anything wrong with the charger. The advocate kept up contact with the vendor, urging that the client’s complaints be taken seriously and that a new charger be installed. In the meantime, Mr. Brown had an idea. He installed a charger from an old scooter he had on hand, charged the wheelchair, and voila! The chair kept its charge for 48 hours. Proof: It was the charger.
The advocate reported this development to the vendor and asked that a new charger be installed free of charge. The request was denied, and, because so much time had elapsed since Mr. Brown had purchased the chair, it did not appear that he had any legal recourse. After pressing the vendor several times for an ethical solution, the advocate referred the Browns to another business. Mobility equipment vendors generally don’t like servicing wheelchairs purchased elsewhere, but the situation was so egregious that the second vendor agreed to take over service and replace the charger.
The Brown’s story doesn’t end there, however. While the frustrating problem with the charger had been the dominant focus of their concern, once it was resolved they realized that the chair itself did not properly fit Mr. Brown, especially as his health status had changed since it was initially purchased. And so, they turned their attention to trying to acquire a new chair – a daunting and potentially very expensive proposition. In fact, the Brown’s anticipated that their insurance company would be reluctant to cover the cost of a new chair given how much it had spent for the old chair and all the various attempts to repair it. With the advocate’s help, the Browns wrote a letter to the original vendor asking that they be reimbursed for the co-pays they had expended on the old chair, and that the insurance company be reimbursed for the amount it had spent for the chair. Astonishingly, the vendor agreed to that request. And, now, Mr. Brown can get around in the world in a chair that fits, meets his needs and won’t leave him stranded.
Forced Medication - Not Without Due Process
George called the Protection and Advocacy for Individuals with Mental Illness (PAIMI) program because, “They want to tie me down and give me medication.” George was calling from an inpatient psychiatric unit in a large urban hospital. He told the PAIMI advocate that he didn’t want the medication because when he had taken it before, he had experienced bad side effects (nausea) and because he felt he did not need it.
Shortly after his conversation with George, the PAIMI advocate received a call from the hospital: A hearing concerning the hospital’s decision to involuntarily administer medication was to take place the next day.
Before the hearing, the advocate visited George at the hospital. George signed a release allowing the advocate to review his psychiatric records. George was fearful of taking the medication, but even more fearful of being restrained – physically held down – while hospital staff injected medication into his buttocks.
On reviewing the record, the advocate discovered that while George had a history of mental illness, he had not been on medication for a long time. There was no indication that George had recently “de-compensated” or of an imminent worsening or exacerbation of George’s psychiatric condition. He made sense during the interview and coherently answered the advocate’s questions. The biggest problem appeared to be that George was homeless and had been living in a tent.
At the hearing, George felt overwhelmed and could not answer questions from the Hearing Officer or otherwise speak up for himself. The PAIMI advocate argued for George that his mental illness and homelessness did not meet the legal standard for involuntary medication. The Hearing Officer agreed with the advocate. He ordered that the hospital could not give George medication against his will.
First Time Voter
Peter Karanja, a new U.S. citizen originally from Kenya, voted for the first time. Peter participated in a P&A voting round table where he learned his rights as a voter with a disability. When it came time to vote, Peter knew his rights and had no problems with the process. When asked about his experience, Peter responded, “I feel that no matter where we are or who we are, we have to fight for the rights of our brothers and sisters with disabilities; they deserve to live a life just as any other citizen. The disability rights movement is a channel where I think our voice can be heard. I want to advocate, fight for equal opportunity for people with disabilities...”
Advocacy - A Lasting Impact
Jacob is a bright, articulate, 35 year old man who carries the label of Autism, and most recently, a diagnosis of Tourette Syndrome. He communicates through facilitated communication and uses a communication board. Tapping with an intensity and determination to truly connect with people, and share his thoughts and ideas, Jacob has a lot to say. He is a strong, nationally recognized advocate who first become known to P&A as a 7 year old child who was being educationally neglected and secluded. Jacob’s school system was not providing the appropriate services and supports to allow Jacob to participate in a regular classroom setting with other non-disabled children. In fact, school administrators
repeatedly told his parents that he was not capable of deriving any educational benefit whatsoever from attending a regular school. P&A supported Jacob’s and his family’s battle through administrative hearings and court proceedings until a judge finally acknowledged that the school was violating Jacob’s rights to an appropriate education in the least restrictive setting. And when, despite that ruling, the school system still refused to include Jacob in the regular classroom, P&A again supported Jacob and his family through another trip to the Court. Ultimately, the school system was forced to comply with the Court’s order, and Jacob successfully attended middle and high school with his peers, receiving the free and appropriate public education that was his right. And he has put that education to good use.
Jacob continues to use what he learned in his fight for equal rights to advocate for deeper levels of inclusion and equality within the world. P&A recently caught up with Jacob who expressed heartfelt gratitude to the advocate who had worked so tenaciously and tirelessly with him all those years ago. “I would’ve been locked away somewhere, I always wanted to thank you and I never got the chance. I think you are the best friend I ever had because you saved me. We had to fight to win, to learn, laws don’t mean “anything if people don’t enforce them”.
As a true and natural self-advocate, Jacob also shared with P&A the knowledge that his struggles continue. Despite all his successes he doesn’t live where he wants to, frequently experiences the limitations of having to rely on staff for certain things, and hates being away from his girlfriend whom he wishes to marry. Life has often been a series of separations for Jacob, but he remains optimistic. He will continue the fight, “action is key”, and as anyone who knows Jacob knows, he is up to the challenge.
Trying to Get an Education
When advocates met with Kevin and his mother, he had just been suspended from his middle school after having returned from an out-of-district educational placement. Kevin has learning and behavioral disabilities which qualify him for special education and related services under both federal and state law. However, his school had failed to convene educational meetings called Planning and Placement Team (PPT) meetings to evaluate and determine his needs for specialized instruction and support services. Without those supports, Kevin had considerable difficulty navigating the regular classroom program. Rather than providing the Individualized Education Plan (IEP) and resources to allow him to be successful within his school community, the District had responded to Kevin’s behaviors with repeated suspensions and other punitive measures, and ultimately, by placing him into a poorly designed, inadequately resourced, segregated program it had hastily developed for students with behavior problems. Following numerous complaints, separate investigations by the State Department of Education and P&A, and a series of embarrassing newspaper articles, that program was adjudged to be a massive failure. The school system promised major changes would be made before the start of the next school year. However, one month prior to the start of that new school year, the school system decided to shut the program down and send its students, including Kevin, to a privately operated out-of-district placement nearly an hour away. At that school, Kevin was routinely physically restrained for misconduct.
Ultimately, Kevin and other students were returned to their home district,
but without the individualized assessment and planning processes required by law. Kevin was back where he started – plunked down in a middle school that was ill-prepared to educate him, and without the appropriate evaluations and an individualized plan for teaching him the coping skills and academic information he desperately needed to succeed. In fact, he had lost ground – two academic years had been wasted by his school system as it shuttled Kevin and other students around, ignoring their needs while it made much-publicized efforts to improve test scores and graduation rates for other students.
P&A filed a formal complaint with the U.S. Department of Education’s Office of Civil Rights (OCR) requesting an investigation of the school’s pattern of unilateral and arbitrary placements and other potentially discriminatory practices affecting students with Emotional Disturbance (ED). OCR agreed to look into Kevin's situation as part of that inquiry. OCR was able to secure a plan of correction from the school system, and a further agreement to comply with it. The agreement ensured system change for Kevin and other students in the district. In Kevin’s case, the school district agreed to review his educational placement and convene his PPT so that a placement decision could be made based on evaluations – evaluations that would include information from a variety of resources and a proper discussion of his needs. Kevin’s team was also required to determine what and how much educational or other services, such as counseling or other related services he had lost, and to develop a plan to compensate him for those services, giving him the opportunity to catch up with his non-disabled peers. Kevin now attends school in his district with the supports he needs.
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The Legal Services Division of the Case Services Unit provides legal advice and representation to selected agency clients. Staff attorneys also represent individuals and groups seeking administrative or judicial remedies for discrimination based on disability. During the year, the P&A legal division provided individual and systemic representation and monitoring on a number of legal issues including, but not limited to: reasonable accommodation and discrimination in housing including inappropriate discharge from a residential care home; lack of effective communication by law enforcement; healthcare facilities, attorneys, and recreational venues; eligibility for services from the Department of Developmental Services; proper treatment for prisoners with disabilities; sterilization of persons with Intellectual Disability; removal of life support; rights under the Americans with Disabilities Act for people with disabilities in nursing homes and other institutions; employment discrimination in both the public and private sectors; and education of children with disabilities in special education settings and post secondary institutions. P&A attorneys also consulted with outside attorneys and the public on questions of disability law; prepared and reviewed amicus briefs; worked with staff to ensure quality responses to public inquiries and prepared comments on proposed state and federal regulations; and collaborated on training police officers in Connecticut about the effective communication requirements of the Americans with Disabilities Act.
He is Eligible!
David, a young man with Autism, had been receiving services from the Department of Developmental Services (DDS) since he was 3 years old. All of his IQ and other educational testing through the age of 18 demonstrated that in addition to his diagnosis of autism, he has an Intellectual Disability. When David was 19 years old, the school psychologist at his high school tested him for purposes of continued special educational services. David’s IQ score on these tests was above the maximum IQ score used to determine DDS eligibility. DDS, after learning about the new IQ test, used the results to determine that David was no longer eligible for services. David and his family received a letter stating that David was no longer eligible and would lose all the funding that his family used to ensure that David had the support he needed to be a valued and active member of his community. They called P&A for help!
A P&A attorney was immediately assigned to the case and represented David at an eligibility hearing, arguing that the one IQ test used by DDS to justify its determination of ineligibility was administered after the developmental period (age 18), was decidedly inconsistent with the results of previous testing, and was an invalid measure for the purposes of determining David’s eligibility. The DDS hearing officer agreed with the P&A attorney and found that David had an Intellectual Disability based on the testing from the developmental period. David continues to receive DDS services and is a very active member and contributor to his community.
Like many veterans, Steven is living with PTSD as a result of his service. He had been working with Paws and People Assisting Wounded Warriors,
an organization that matched him with a service dog to assist him with his PTSD. When Steven’s landlord refused to allow him to bring his dog home to live with him, he called P&A. A P&A attorney contacted representatives of the landlord’s management company and informed them that refusing to allow a tenant to have a service animal was a violation of the Fair Housing Act (FHA). When the management company said it needed information regarding the breed of the dog and a copy of the dog’s certification as a service animal, P&A informed the management company that, pursuant to provisions of the Fair Housing Act (FHA), they could not insist on information regarding the dog's breed, and, further, that service animals were not required to be “certified.” Upon learning that Steven would be required to keep the dog under control and to clean up after it, the management company agreed that he could bring his dog home.
An Opportunity to Work
Frank is a person with a psychiatric disability. Shortly after he started working at a customer service call center he experienced some difficulties due to his disability. He called his case manager at the Department of Rehabilitation Services (DORS – formerly BRS) for assistance. At the case manager’s suggestion, Frank requested reasonable accommodations - one-on-one training; a flexible schedule so that he could attend an intensive outpatient treatment program; and relocation of his work station setting to minimize distractions from fellow employees. His employer requested that Frank provide information through his medical provider via a medical questionnaire. Frank’s medical provider filled in the questionnaire. However, the employer did not feel that the information was sufficient. Frank was asked to sign a general release so that his employer could speak directly with his mental health provider. Frank was uncomfortable giving blanket permission for his doctors to discuss his issues with his employer, but he very much wanted to keep his job and knew he needed accommodations. He contacted P&A.
After several discussions with the employer’s ADA Coordinator, a P&A attorney was able to negotiate an agreement that worked for Frank. He could take a few weeks of medical leave to focus on getting better, and then return to work on a reduced schedule for the first two to three weeks in order to enable him to continue in intensive outpatient therapy and to readjust to work. Frank would have a new workstation out of the view of other employees and closer to his supervisor. The employer also agreed to allow a job coach to be present at the work site, and to allow Frank a seat in the back of the room during group training. Frank now reports that, with these accommodations in place, work is going well.
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Pursing Systems Change
Responding to the needs and issues that individuals with disabilities bring to P&A helps identify persistent civil rights enforcement issues and systemic barriers to inclusion, participation and contribution. P&A pursues systems change strategies and shares what it learns with opinion leaders, elected officials, courts and with members of the public.
During the past year, P&A pursued systems change through a variety of activities including educating policymakers regarding the positive and negative aspects of proposed legislation. Others systems change activities include participation on boards, committees and task forces; individual and group litigation focused on remedies that impact large numbers of people with disabilities; investigation of abuse and neglect in community and institutional settings; and addressing statewide issues, such as emergency preparedness to ensure that planning and implementation include the needs of people with disabilities. A few examples of these activities are included, below.
During the Connecticut Legislative Session, P&A tracks legislative proposals that may affect the rights of persons with disabilities in Connecticut. The agency’s Legislative and Regulations Specialist (LRS) publishes a weekly “Legislative Update” that lists the status of bills being considered by the Connecticut Legislature and provides information about public policy decisions and events important to the lives of people with disabilities and their families. The LRS also 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. After each legislative session, P&A also publishes an annual Legislative Summary of disability-related Public Acts passed during the legislative session.
The primary concern during the 2012 session was a proposal to merge the Office of Protection and Advocacy for Persons with Disabilities (P&A) with the Commission on Human Rights (CHRO). The leaders of P&A and CHRO both opposed this proposal. P&A Executive Director, James McGaughey, testified during public hearings and met with several legislators to explain that Connecticut residents with disabilities could lose the safeguarding and advocacy authority conferred by federal P&A statutes (PADD, PAIMI, PAIR, etc.). P&A used this opportunity to educate legislators and other policy makers about what P&A does and the need for an independent disability civil rights office. It was very gratifying that many members of the disability community also made known their opposition to this merger. Ultimately, lawmakers decided that P&A needs to remain independent.
P&A testified on many bills that would impact the lives of people with disabilities in Connecticut, including proposals addressing special education, diabetes medication administration in schools, unionization of personal care attendants (PCAs), the administration of rehabilitative and vocational services, and medication administration delegation by registered nurses. Other legislation supported by P&A prohibits discrimination of renters with mental illness and Intellectual Disability.
In addition, legislation was passed to (1) require newborn screening for critical congenital heart disease, (2) address lead poisoning prevention, (3) allow the palliative use of marijuana, (4) change insurance coverage requirements for Birth-To-Three services, (5) eliminate the cap on the number of participants in the Katie Beckett Waiver program (but only if enough money is put in the budget) and (6) make revisions to Probate Court matters including guardian ad litem, conservatorship and guardianship.
Finally, legislation passed in 2012 created a task force to study how the state can encourage “aging in place”. The task force must specifically address infrastructure and transportation improvements, zoning changes to facilitate home care, enhanced nutrition programs and delivery options, improved fraud and abuse protections, expansion of home medical care options, tax incentives, and incentives for private insurance. This task force will address aging in place across the lifespan.
Making Change for Parents with Disabilities
For many years, P&A has represented parents with Intellectual Disability or borderline intellectual functioning. Through this work, we have learned that it is not unusual for a parent to lose custody of their child - not because of anything they have done wrong, but because of their diagnosis. This occurs despite the fact that a considerable body of research exists demonstrating that parental capacity and intellectual functioning are not closely correlated.
In some cases this occurs because a parent needs some level of ongoing support. This can create difficulty in a child protection system that
operates under mandated time lines that require development of a safe, permanent alternative if the birth parent's problem isn't "fixed" within a year or so. Such timeframes for “permanency planning” may be understandable in situations where addiction to substances, lack of skills or criminal acts are involved, but cognitive impairments are not “resolved” by completing a treatment program or making life changes. Even so, parents with intellectual disabilities are sometimes required to attend generic "parenting classes" which may have no bearing on their needs and issues, and may not even be offered in a format that is accessible to them. Even after completing these classes, the parents still need ongoing, individualized instruction and support.
This is a situation where fighting discrimination requires both individual case advocacy and systems change work. The latter has led to P&A's involvement in the State’s Parents with Cognitive Limitations Workgroup, and membership in the international not-for-profit organization, The Association for Successful Parenting, (TASP). This year, Ellen Gilmartin, a P&A staff advocate, was elected to a leadership role within that organization. And, after years of work by many allies, change is coming to Connecticut! The Department of Developmental Services (DDS) has obtained approval for Medicaid reimbursement for parental support and training, beginning early in 2013; and DDS and the Department of Children and Families are working together to meet the needs of families for the first time. These changes have already been making a difference for a number of Connecticut families.
But more needs to be done. The way forward is clearly spelled out in an important, recent report, produced by the National Council on Disability, Rocking the Cradle. As national attention is being focused on this issue, Connecticut is poised to be a leader. The Office of Protection and Advocacy will be co-sponsoring the 2013 conference of an international not for profit organization, The Association for Successful Parenting,. This conference will be held in Mystic, Connecticut on October 1st and 2nd, 2013. The title of the conference is: Innovative Partnerships and Practices: The Path to Success for Parents with Learning Difficulties and Other Cognitive Limitations
. For more information visit www.achancetoparent.net
Improving the Experience of Voters with Disabilities
During this fiscal year, P&A expanded its voting rights pages on the agency website; developed a series of roundtable discussions between voters with disabilities and local elections officials; began a newsletter directed at municipal Registrars of Voters; and produced a graphically enticing document, “A Poll Workers Guide to Assisting Voters with Disabilities in
Connecticut” designed to quickly educate, and serve as a reference for poll workers on the rights of voters with disabilities. In addition, PAVA continued to provide consultations for municipal voting officials, advocating for individual voters with disabilities, and working in close collaboration with the Connecticut Office of the Secretary of the State.
The new website offerings include a range of documents, from a listing of important dates in the current election cycle to materials on accessibility that can be used any time during the year. One of the goals was to take complex information and communicate it in clear, easily understood prose; another was to use, with permission and attribution, the best explanatory and reference material we could find during an extensive review of other voter rights websites. The site is divided into two sections, one directed at Registrars (some of whom have disabilities) and the other at voters with disabilities. It includes an “Ask the (Help America Vote Act) HAVA Advocate” feature, as well as an instructional video, advice on etiquette, and a selection of material on rights.
The voting roundtables convened voters with disabilities, the HAVA Advocate, and Registrars from the local area for 90-minute discussions on rights, barriers, and methods for collaboration and mutual support. Candid but congenial interchanges have left participants feeling better informed and more able to communicate productively. The newsletter, which is e-mailed to all Registrars and posted on the voting web page, functions as both an educational document and a vehicle for sharing concerns and helpful tips. One section features imaginative strategies developed by Connecticut Registrars to increase the rate of registration. The most innovative idea reported thus far: distributing registration cards at the town dump.
The Office of the Secretary of the State deputized several P&A staff to assist in assessing the physical and voting system accessibility of polling places during the April 2012 primary. During a visit to one of the towns, P&A staff identified several accessibility issues including a serious problem with handrails on a ramp. Shortly after the visit, the town installed new, smooth handrails on the ramp.
“After [the P&A staff member’s] visit to our town polling places, we learned about ourselves and responsibility toward others who function differently. We discovered we needed to replace items that were unsafe and improve our facilities. This has made us more aware of the needs of others. These improvements were made almost immediately at very little expense. I think our attitude was the greatest improvement. Thank you for your care and concern.” Registrar from an Eastern Connecticut town.
P&A continued to focus on the inclusion of people with disabilities in emergency preparedness planning and implementation. After the storms of 2011, P&A surveyed people with disabilities and reported on their experiences to the Two Storm Panel convened by the legislature to improve the state’s future storm response. During the year, P&A staff continued to work with the Red Cross, Department of Emergency Management and Homeland Security and local emergency responders on emergency preparedness issues such as mass care sheltering and disaster drilling.
Hurricane Sandy provided another challenge for people with disabilities as the Connecticut experienced significant damage. P&A was ready, participating at the state Emergency Operations Center and working with FEMA to ensure that people with disabilities had access to disaster recovery facilities and programs. The day after Hurricane Sandy, P&A mobilized staff who visited several of the emergency shelters to ensure that they were welcoming to people with disabilities. Staff also learned about the experience of several individuals with disabilities that they met at the shelters and distributed a flyer on P&A services, inviting shelter residents to contact the agency for assistance. P&A continues its collaboration with FEMA as Connecticut continues to clean up after Sandy.
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Reaching and Teaching
Reaching and teaching: People with disabilities and families who are isolated by geography, communication barriers, cultural boundaries or just the overwhelming demands of their daily struggles need opportunities to join with others and learn how to collectively influence the world around them. P&A works with family groups, people who are members of minority communities and with people living in isolated institutions to help them with their learning and efforts to participate and change things for the better.
Every year, P&A staff participates in a variety of outreach events. This year, P&A sponsored or participated in 85 training events, including presentations, workshops, conferences, and resource fairs. More than 2,700 individuals received training on topics that included P&A programs and services; end of life issues; rights under the Americans with Disabilities and the Fair Housing Acts; special education including “least restrictive environment”, inclusion, the requirements of the Individuals with Disabilities Education Act, transition and due process; voting rights of people with disabilities; employment rights and work incentives; vocational rehabilitation; assistive technology; parent leadership; structural accessibility; rights of parents with disabilities; how the legislature works; emergency preparedness; rights of people with mental illness; brain injury and domestic violence; and abuse/neglect reporting. Information was disseminated to more than 3,000 people at 30 resource fairs. Over 14,000 publications and P&A program brochures were distributed to individuals and organizations throughout the year. More than 3,500 people were given the opportunity to register to vote.
The P&A website is constantly updated and includes current news and a calendar of upcoming events; P&A program descriptions and agency publications; legislative updates; links to websites for disability rights and resources; and reports on developments in the field of disability rights. Many of the P&A publications have been translated into Spanish and are available on the P&A website. Last year, 132,135 visitors obtained information through the site (www.ct.gov/opapd
) and more than 26,000 publications were downloaded.
P&A staff supported community based disability advocacy groups across Connecticut, providing training and technical assistance on organizational development issues and disability rights. The agency continued its support for African Caribbean American Parents of Children with Disabilities (AFCAMP), Padres Abriendo Puertas (PAP); ADAPT and the Americans with Disabilities Act Coalition of Connecticut.
Communities of Faith and Inclusion
P&A in collaboration with its Developmental Disabilities Network partners (Connecticut Council on Developmental Disabilities and the University Center for Excellence) sponsored a faith-based conference, “Including People with Disability in Faith Communities. The conference brought together fifty- five religious leaders from all faiths to begin a dialogue about full participation of individuals with disabilities in all aspects of their faith communities including attendance and participation in worship services, community service projects, and other events sponsored by their faith community. Leaders were given the opportunity to exchange ideas on how they can work with their congregations to set a welcoming tone that embraces diversity and includes people with disabilities of all ages and abilities. A panel discussion highlighted people with disabilities from different faiths. The conversation was facilitated by Dr. Erik Carter, Associate Professor in the Department of Special Education at Vanderbilt University and author of books on including people with disabilities in communities of faith. This initial conversation highlighted successful strategies and will lead to further discussions as faith based organizations work to welcome all people to their communities.
Partners in Policymaking
P&A also collaborated with its Developmental Disabilities Network partners to sponsor “Partners in Policymaking”, (Partners) a nationally recognized comprehensive leadership training for people with disabilities and parents or grandparents of children with disabilities. Participants spent seven
overnight sessions at a hotel where they had an opportunity to learn from state and national experts about disability related topics such as History of the Disability Rights Movement, Self Advocacy, Vocational Rehabilitation and Employment Rights, Housing, State and Federal Laws and Regulations, Inclusive Education, Assistive Technology, Communication and Team Building, and the Legislative Process. Monthly hands on activities helped to build oral communication skills culminating in a session where participants practiced expressing legislative ideas with their state senators and representatives. Each participant was responsible for developing a project that would benefit the disability community. Notable projects included training for boards of education about basic disability issues, a brochure on driver training for drivers with disabilities, and a public service announcement encouraging motorists to stay out of accessible parking spaces.
Because of the need to develop leaders in the disability community, P&A staff devoted significant time to Partners. P&A participated on the planning committee and attended sessions of the training, providing extensive support to Latino participants who experienced difficulty with the training. Staff provided training in the areas of cultural diversity, federal disability laws, special education, parliamentary procedure, how the legislature works in Connecticut and assistive technology.
Twenty five participants graduated from the program in September 2012. Many of them are already using their Partners experience to effectively advocate for themselves and others, improving their communities and the lives of persons with disabilities.
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Major Issues Affecting People with Disabilities
Connecticut General Statutes §46a-13 mandate that P&A report annually on issues affecting Connecticut citizens with disabilities. Full participation in community requires that people have choices about where to live, work and play. People with disabilities who require services and supports should be able to choose community living over being forced into institutional living. The state publishes a Long Term Services and Supports (LTSS) Plan every three years to implement the over-arching goal of rebalancing long term services and supports so that the great majority of persons live in community settings. Many of the issues in this section were also identified as barriers affecting people with disabilities in Connecticut. The following issues were identified during this reporting year.
Because of major storm events in 2011, it became clear that emergency preparedness planning for people who have access and functional support needs needed improvement. One year later, in October 2012, the planning and strategies were tested by Storm Sandy. Local and regional shelters were better prepared to serve their communities. Many shelters successfully implemented physical and architectural access improvement, communication plans for people who are deaf or hard of hearing and providing charging stations for electrical equipment such as wheelchairs. But there are many issues that need to be addressed more formally at the state and local level. Leaders at all levels must demand that planning and response to emergencies are based on a true “we are all in this together” attitude.
One of the earliest goals articulated by the disability rights movement was to resolve the problem of inadequate accessible public transportation. While some progress has been made on this front – most notably by transit districts operating fixed bus routes – it is still tremendously difficult to arrange to travel between different regions of the State without planning many days ahead. For people who use busses, moving about during evening and weekend hours is especially problematic. For people who do not live near fixed bus routes, the only solution is often to pay for expensive medical transportation services simply to get a ride to a meeting or for a doctor’s appointment. Another new option is accessible taxicab service. Wheelchair accessible taxis now serve 34 towns in the greater Bridgeport, Hartford and New Haven areas.
Personal Care Services.
Personal Care Attendants (PCAs) are people hired, trained and supervised by individuals with disabilities to provide personal care. The role of the individual with a disability as an employer is central to the concept of Personal Care Service, which, itself, is a critical component of the Independent Living Movement. Legislation to allow PCAs to unionize became law in 2012. This new law requires the Department of Social Services (DSS) to compile and maintain lists of PCAs, and provides liability protection for the state under certain circumstances. As the union leaders are organizing PCAs there is concern about the union receiving personal information about persons who use PCAs. The new law specifically excludes certain subjects from collective bargaining and prohibits any provision in a contract or arbitration award from reducing PCA services. It requires the General Assembly to affirmatively approve any contract or arbitration award that would require additional appropriations to maintain existing service levels. The Act creates a PCA Workforce Council to study and plan for improving PCA quality, stability, and availability.
As pressures increase on public schools to remedy poor performance, and all levels of government are facing significant financial problems, the institution of Special Education is coming under increasingly hostile fire. Among school officials, much of the hostility is being directed at parents who are being characterized as “unreasonable” “demanding” or “unrealistic”, and who are being blamed for consuming an unreasonable amount of scarce resources by challenging the adequacy of programs being offered to their children. School districts continue to try to reverse long-standing State rules that assign to school districts the “burden of proof” at a “due process” hearing that what they are proposing for a particular child is indeed adequate.
Despite these pressures, in 2012 state lawmakers passed legislation to require local and regional boards of education to provide training to special education professionals regarding the implementation of student individualized education programs (IEPs) and the communication of IEP procedures to parents or guardians of students who require special education and related services. This training must be offered to certified employees with an endorsement in special education who hold a position requiring this endorsement. For the legislature to enact such measures indicates the need to remind towns and cities of their obligations to serve all children.
Real Work & Expectations for Employment.
To prepare students for a future where their own earnings will be a significant factor in how they live, special education will need to impart real, marketable vocational skills and expectations for on-going, life-long learning. Similarly, the vocational rehabilitation system will need to focus, as never before, on work. The days of sheltered workshops and traditional, low expectation tabletop assessment processes are coming to an end.
Architectural Access to Government Buildings.
State and federal laws require that all government services and programs be accessible to people with disabilities. Most government buildings meet the technical requirements. But the technical requirements fall short of ensuring the full access that all Americans deserve. The technical requirements do not require government buildings to have the main entrance fully accessible with ramps and automatic doors. But full and equal participation requires that all citizens can enter through the front doors of the halls of government. Nobody should have to go to the “back door” or service entrance used by the shipping department.
Affordable, Accessible Housing.
The long-standing statewide shortage of affordable, accessible homes continues to thwart efforts by people who wish to move out of long-term care facilities. Accessible rental units for families are in especially short supply. While new housing starts are down, some efforts to rehab existing building are going forward. It is critically important that residential building code requirements continue to provide for percentages of new and rehab units to be made accessible and adaptable for individuals and families who have disabilities. Legislation passed in 2012 created an “aging in place” task force. Housing, and community based services and supports, are key topics the task force will address. Additional legislation provided protection against housing discrimination for renters with mental and intellectual disabilities.
In the fiscal year ending June 30, 2012, P&A had a total operating budget of $3,939,146.72. Of this, $2,480,977.55 (63%) was state funding and $1,458,169.17 (37%) was federal funding. Personal services expenditures comprise 93% of P&A's General Fund Budget, with an additional 7% expended on contracts, outside services and necessary expense items, including supplies, equipment, telephone, postage, and printing.
P&A Federal Expenditures for Fiscal Year
U.S. Department of Education, Rehabilitation Services Administration – Client Assistance Program (CAP) - $48,798.25
U.S. Department of Health and Human Services - Protection and Advocacy for Individuals with Mental Illness (PAIMI) - $551,456.40
Connecticut Department of Social Services - Social Services Block Grant (SSBG) - $119,990.55
U.S. Department of Health and Human Services, Administration on Developmental Disabilities - Protection and Advocacy for Developmental Disabilities (PADD), including a grant from Connecticut Council on Developmental Disabilities - $304,457.72
U.S. Department of Education, Rehabilitation Services Administration – Protection and Advocacy for Individual Rights (PAIR) - $148,597.29
U.S. Department of Education, Rehabilitation Services Administration – Protection and Advocacy for Assistive Technology (PAAT) - $50,789.55
Social Security Administration - Protection and Advocacy for Beneficiaries of Social Security (PABSS) Note: Includes funds for Social Security Representative Payee Mentoring Program - $115,981.23
U.S. Department of Health and Human Services - Administration on Developmental Disabilities – Protection and Advocacy for Voting Access (PAVA) - $55,112.71
Health Rehabilitation Services Administration - Protection and Advocacy for Traumatic Brain Injury (PATBI) - $62,985.47
Federally Mandated P&A Programs for Persons with Disabilities
Federal Program Program Description
Protection and Advocacy for Individuals with Developmental Disabilities
(PADD) - 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 education of policymakers about issues of concern to persons with disabilities.
Client Assistance Program - (CAP) - 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 (PAIMI) - 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 a brain injury.
State Mandated P&A Programs for Persons with Disabilities
Chair and Support Fatality Review Board for Persons with Disabilities (Executive Order #25) - Five members, appointed by Governor, chaired by P&A Executive Director and staffed by federally funded investigator. The FRB conducts full, independent investigations into deaths of certain DDS Clients.
I&R Services, C.G.S. §46a-11(3) - Provides response to more than 9,900 inquiries/requests for assistance annually. Conducts limited research and provides individualized information.
Case Advocacy Program, C.G.S. §46a-11(4),(5),(8),(11) - Individualized case advocacy by Human Services Advocates. Individual advocacy plans developed with clients; specific outcomes sought.
Public Education, C.G.S. §46a-11(10) - Presentations and self-help literature; website and other publications.
Fund or initiate litigation to secure rights, C.G.S. §46a-11(7) - Staff attorneys; sub-contracts with legal services provider.
Investigate allegations of abuse and neglect of adults with intellectual disability, C.G.S. §46a-11a, et. seq. P.A. 03-146; P.A. 04-12 - Monitors internal service system investigations and conducts primary investigations into allegations of abuse/neglect re: adults with mental retardation; investigates deaths of DDS clients where abuse/neglect is suspected. Recommends protective services (from DDS) or calls for Immediate Protective Services where needed.
Review and issue joint decisions or requests for exception to accessibility of building code; installation of wheelchair lifts, C.G.S. §29-269-271 - Weekly meeting with representative of State Building Inspector to review approximately 75-120 waiver requests per year. Decisions based on showing of infeasibility or unreasonable complication to construction. Review and rule on requests for waivers from polling place access requirements C.G.S. §9-168 et. seq. Applications forwarded by Secretary of State: 8-12 requests per election cycle.
Ensure compliance with federal P&A system requirements, Public Act 03-88 - Requires director to operate agency in conformance with federal P&A system requirements.
Annual Report to Governor and Human Services Committee - C.G.S. § 46a-13 - Annual Report submitted 1st of December. Report must include status of services for persons with disabilities and make recommendations regarding rights.
Accessibility Advisory Board established - Public Act 06-56 - Allows the director to establish an accessibility advisory board to be 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 report is available in Alternative Formats upon request.
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