OPA: P&A 2002 Annual Report Part 1

P&A Annual Report 2002 (part 1)

Message from the Executive Director

P&A Vision Statement

Introduction to the Office

P&A Programs

Client Assistance Program

P&A for Persons with Developmental Disabilities

P&A for Individuals with Mental Illness

P&A for Assistive Technology

P&A for Individual Rights

Support to Individuals and Families

Top 10 Issue Areas

To further Empower Individuals and Families

Defending the Rights of Vulnerable Populations

An Issue of Guardianship

The Work of P&A Investigators

Support for Community Advocacy and Coalition Building

Systems Change Initiatives

PABSS and CAP collaborate on One Stop Project

Residential Care Facilities Outreach and Education Project

Olmstead Response

ADA Compliance

CAD v. Middlesex Hospital, et al

Every1Counts

Library Inclusion for Everyone

Epipens Becomes Legislative Issue

Legislation 2002

Fiscal Facts and Figures

Major Issues Affecting People with Disabilities

Housing

Education

Employment

Health Care

Access to Information and Advice

Access to Community Infrastructure

Abuse and Neglect 

A Message from the Executive Director

James D. McGaughey

This year the Office of Protection and Advocacy for Persons with Disabilities marked its twenty fifth year of service.  Twenty-five years as the designated federally mandated protection and advocacy system for Connecticut. Twenty-five years of working with individuals, families and communities; of defending civil and legal rights; of investigating, and organizing and educating.  Twenty-five years of listening and learning from peoples’ stories.  However, while we did take a day in September to celebrate and reflect on our history, we have been too busy to indulge in much nostalgia.  Indeed, quite apart from our anniversary, the year 2002 has been most eventful. 

Responding to concerns about the independence and adequacy of fatality review processes for people with mental retardation, Governor Rowland issued Executive Order #25 in February 2002.  Among the changes it created was establishment of a new, independent Fatality Review Board (FRB), comprised of experts appointed by the Governor and chaired by P&A’s Executive Director.  To close gaps in previous reporting protocols, the Executive Order also directed that the deaths of all clients of the mental retardation service system be reported to P&A.  Implementing these responsibilities has required development of new programmatic and data tracking capacities.  However, as a result of these developments, concerned families and friends will now be able to turn to a source of   independent review, and OPA is in a stronger position to implement its federally defined role as an external, independent watchdog agency.

Several other major developments have also involved considerable time and energy.  Like the FRB, they promise to significantly improve our effectiveness.  These include the creation of a sophisticated information system to collect and sift data from our Abuse Investigation Division, and the publication of a comprehensive manual for families raising children with disabilities.  As a result of establishing the abuse database, we will be able to efficiently track trends and spot issues that raise safeguarding policy questions.  The family member’s manual answers a frequently expressed need for information that is both “broad and deep” – broad enough so that parents and other family members can see the whole landscape of programs, rights and planning approaches available to them, but also deep enough to equip them to effectively advocate for their children.

In addition to these initiatives, we continue to respond to high volumes of requests for assistance from individuals with disabilities, families, and community groups.  And, as this report reflects, the members of our staff and Board remain committed to the people, and to the important purpose for which we were established 25 years ago.


P&A Vision Statement

The State of Connecticut will have a

legally based

protection and advocacy system that is deeply rooted in the
experience of people with disabilities
and widely recognized, well respected and supported for its

leadership,

Its commitment to community partnerships,

equality and justice,

empowering approaches;

and its ability to

effectively defend and advance

the civil rights

of people with disabilities.


Introduction to the Office

The Office of Protection and Advocacy for Persons with Disabilities (better known as “P&A”) is an independent State agency created in 1977 to safeguard and advance the civil and human rights of people with disabilities in Connecticut. Through its work, P&A aims to leave people with disabilities and their families better informed, equipped, and supported to advocate for themselves and others.

Part of a nationwide network of protection and advocacy systems, P&A’s federal mandates require organizational independence from service providing agencies and confers authority to access records, conduct investigations, pursue legal remedies, and educate policymakers.

P&A Programs

  • Sections 46a-11 et. seq. of the Connecticut General Statutes (C.G.S.) articulate the purpose of P&A under state law, and specifically authorize:advocacy, including legal advocacy, on behalf of individuals with disabilities.
  • investigations concerning reports of alleged abuse or neglect of adults (ages 18-59) with mental retardation.
  • investigations into general complaints made by, or, if in writing, made on behalf of people with disabilities.
  • community development and public education activities, such as community organizing, training, technical assistance and support to community-based advocacy/disability/family support organizations.
  • information and referral services, connecting callers to the appropriate P&A unit, and providing short-term advocacy assistance. 

Other sections of the Connecticut statutes authorize P&A to review, in conjunction with the State Building Inspector, requests for exemptions from the accessibility provisions of the State Building Code (C.G.S. Section 29-269), and requests for approval to install wheelchair lifts in most types of buildings (C.G.S. Section 29-200), and to review, in conjunction with the Secretary of State, requests for exemptions from polling place accessibility requirements (C.G.S. Section 9-168d).

In addition to these services authorized under state law, P&A operates the following federally mandated advocacy programs for people with disabilities:

  • P&A for Persons with Developmental Disabilities (PADD) requires all P&As to be independent of service systems; to have access to client records; to have the authority to conduct investigations and to pursue legal and administrative remedies on behalf of clients of the DD service system; to provide information and referral services; and to educate policymakers about issues of concern to persons with disabilities.  
  • Client Assistance Program (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). 
  • P&A for Individuals with Mental Illness (PAIMI) investigates allegations of abuse and neglect and other complaints raised by people with mental illness who reside in supervised facilities, and, in some cases, those who live in the community. PAIMI also advocates for appropriate discharge plans, consumer choice, and respectful, relevant supports. 
  • P&A for Assistive Technology (PAAT) provides consumer education and representation in an effort to expand the availability of assistive technology devices and services for people with disabilities. 
  • P&A for Individual Rights (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) Program (Section 1150 of the Social Security Act) is the most recent addition to the federally funded P&A programs. PABSS assists beneficiaries of Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) who need information, advice, advocacy or legal services in order to secure or regain employment.

"When seen from the perspective of history, great strides have been made over the past thirty years to overcome barriers that traditionally excluded and marginalized people with disabilities.  Civil rights protections have been enacted into law, and service systems are evolving in directions that afford greater respect for individual autonomy and choice.  But we are still grappling with the legacy of a physical infrastructure that tends to exclude people and with social patterns that developed long before there was a disability rights movement........   Given the depth and pervasive nature of this legacy, it is hardly surprising that despite recent, measurable progress, barriers to full participation in economic and civic life still dominate the disability experience."

James D. McGaughey, Executive Director

from the analysis of Major Issues Affecting People with Disabilities


Support to Individuals and Families

The Office of Protection and Advocacy for Persons with Disabilities continued to provide high quality, current information and representation related to disability rights and resources.  The Consumer Information Unit, a part of the Case Services Division, responded to disability-related questions from individuals with disabilities, their families, legislators, municipal officials, employers and other interested members of the public. 

P&A staff members also provided short and long-term advocacy interventions consistent with its state and federal statutory mandates.During the past twenty-five years, the complexity and intensity of the requests has increased, requiring Consumer Information staff to have a sophisticated knowledge of a wide variety of disability issues. (See top ten issues illustrated above.)

During the 2002 fiscal year, P&A and its four subcontractors responded to 6,583 requests for information and referral (I&R) services and short-term interventions. Consumer Information staff addressed 500 housing inquiries related to landlord/tenant disputes, reasonable modification, rental termination, zoning, rental subsidies and accommodations.  Consumer Information staff also answered questions concerning education (456), access to services (417), employment (345), abuse and neglect (251), health care (235), financial entitlements (225), rehabilitation services (224), personal decision making (223), transportation (195) and assistive technology (107). Callers also contacted P&A with concerns about issues including the Americans with Disabilities Act, guardianship, recreation, and daycare.   

In addition to support provided through information and referral and short-term intervention services, 1,348 individuals with disabilities received advocacy representation from P&A advocates, attorneys and subcontractors.  These individuals included 371 persons with mental retardation, 283 with psychiatric or emotional disabilities, 70 with learning disabilities, 52 with orthopedic impairments, 37 who are deaf or hard of hearing, 20 with brain injuries, 15 with cerebral palsy, and 6 with blindness or a visual impairment.

Individuals receiving advocacy representation services from a P&A advocate or attorney presented 677 distinct advocacy issues.  One hundred sixty one (161) of these issues involved abuse or neglect, 136 involved access to services, 105 involved vocational rehabilitation services, 91 involved education programs and placements, 48 involved rehabilitation programs, and 40 involved personal decision-making.  The remaining issue areas included assistive technology, employment, housing, health care, transportation, and financial entitlements. Fifty (50) percent of the individuals represented were Caucasian, 13% African American, 13% Hispanic, and 2% other.  Twenty-two (22) percent did not report ethnicity.

To further empower individuals and families

·    P&A sponsored or actively participated in 129 training opportunities including media events, workshops, conferences, fairs, presentations, and focus groups.  Approximately 2,600 individuals received training on topics that include, but are not limited to, the Americans with Disabilities Act, special education, P&A services, assistive technology, and disability rights and resources. Over 6,600 P&A materials and other publications were distributed.  

·    In an effort to reduce expenses, the “Disability Buzz”, P&A’s newsletter, was published once during the year. Distributed to over 1,800 consumers, policymakers, and disability organizations, the newsletter highlighted restraint and seclusion issues affecting persons with disabilities in Connecticut and included a Q&A section, a legislation summary and a review of some of the restraint/seclusion reports received by P&A.  In the coming year, P&A will publish its newsletter on-line.

·   P&A continuously updated and enhanced its accessible Internet site (www.ct.gov/opapd).  Information on the site is targeted toward individuals with disabilities, their families and members of the general public interested in basic disability rights and resources.  Through the site, the general public may access a weekly posting of disability news and information, P&A self help literature, information about P&A programs, reports on current developments in the field of disability rights on the state and federal levels, related sites of interest, and a summary of disability laws.  Links to relevant bills and public acts are available during the Connecticut legislative session. Individuals may e-mail questions or request information or publications through an e-mail link located on the Internet site.

 ·   P&A extensively distributed its series of self help booklets. Updated in 2002, the publications answer basic questions about frequently asked disability issues. The booklet series currently includes a Disability Resource Directory; Building Accessibility; Access to Your Medical Records; Accessible Modes of Transportation; How To File a Complaint with CHRO; Rights In a Psychiatric Hospital; About SSI; Connecticut Fair Housing Laws; Your Rights and Responsibilities in Making Medication Choices; Your Rights to Vocational Rehabilitation; An Act Concerning Physical Restraint of Persons with Disabilities (PA 99-210); Conservatorship of Person and/or Estate; and Guardianship for People with Mental Retardation.  All booklets are available on the P&A Internet site and can be requested in alternative formats.

 ·  Special Education is Not a Place, a 79-page family resource manual, was printed and distributed to individuals with disabilities, parents, and educators located in all areas of Connecticut.  The manual is designed to assist parents and other family members of individuals with disabilities in obtaining necessary educational supports for their children and in accessing appropriate health care and other services. 

The P&A PABSS advocate participated in a workgroup to improve the accessibility of One Stop Centers in Connecticut.  "Everybody Works" is assessing physical and communication accessibility, and opportunities for persons with disabilities to learn about their employment rights and resources.

Case Story 1: Paul Goes Back to Work

Paul is a 25-year-old college graduate with a bachelor's degree in communications.  During his college years, he was diagnosed with Aspergers Syndrome (a form of autism).  After graduation, he began work at a public radio station but lost his job after two years due to station cutbacks. Unable to find a job and eligible for Social Security Disability Insurance (SSDI), Paul received monthly benefit checks for approximately three years. During this time, he continued to apply for jobs, go for interviews, and in time contacted the State Bureau of Rehabilitation Services (BRS). A BRS counselor interviewed Paul and subsequently referred him to a private rehabilitation provider to help him rejoin the workforce. Paul was concerned, however, about how his SSDI benefits would be affected by employment. 

Paul's interest was piqued when he received a P&A flyer about a public forum on the various work incentives offered to Social Security beneficiaries under the new federal "Ticket to Work" program. Given the complexities of this new initiative, Paul, like many others, needed help in understanding his rights and options.  He attended one of the five public forums hosted by P&A's new Protection and Advocacy for Beneficiaries of Social Security (PABSS) program where he received some encouraging information.

Preferring to work, Paul set up a meeting with the PABSS advocate who more fully explained the changes in the Social Security system under the Ticket to Work program.  The PABSS advocate referred Paul to a benefits counselor at BRS’s new Connect to Work Center. The PABSS advocate also reviewed Paul's resume to get a sense of how employers might be viewing him, and recommended he visit a One Stop Job Center operated by the State Department of Labor.

It became clear that although Paul had good skills, he would benefit from a "situational job assessment", which would give him a chance to try a job for a 40-hour period and give a potential employer an opportunity to see how he performed.  Paul participated in a situational assessment and at the end of the 40-hour period, was offered a permanent position with a large company. He is now employed and able to keep a portion of his social security benefits, and is working toward becoming completely self sufficient.

Case Story 2: A Good Student and A Field Trip that Almost Wasn’t

Brian is a seventh grader with muscular dystrophy who uses a wheelchair.  He participates in an after school program with many of his classmates. As a reward for good grades, Brian was among the students chosen to go on a field trip to the Indian museum. He received permission from his mother and was excited about the trip. Meanwhile, the director of the after school program tried unsuccessfully to secure travel arrangements with Brian's regular transportation provider. His mother was informed that because accessible transportation arrangements could not be made, Brian could not go on the field trip with the other children.

Two weeks before the trip, Brian's frustrated mother called P&A. After she met with an advocate and attorney from P&A, the attorney placed a telephone call to the director of the after school program and made another call to the school district's special education supervisor. The attorney informed each of them that excluding Brian from the trip by not providing appropriate transportation arrangements may be in violation of state and federal law, including the Americans with Disabilities Act (ADA).  In a follow up message from the school district's special education supervisor, P&A and Brian's mother received assurances that transportation arrangements would be made for this trip and all future trips. In the end, Brian got his good grade reward and participated in the field trip with the rest of his schoolmates. 

Case Story 3: Going Back to College Posed Difficulties

Cindy is a young woman who is profoundly deaf.  Recruiters from a local college came to her place of employment to solicit students for a new accelerated program being offered to working people who would like to finish their studies to earn an associate degree.  The program included four hours of study, once a week, in five modules spread over a two-year period.  Cindy and a co-worker were impressed with the flexibility of the program and decided to register. The college, eager to sign on students, informed Cindy that she was eligible and provided her with an oral interpreter so she could first audit the program to gauge her interest.  After Cindy audited a course and decided to enroll, she was told by the College that providing oral interpretation would be too costly for the new program to absorb.  She was offered a note taker and a tape recorder as an alternative.  The tape recorder would require lengthy transcription services at Cindy's expense. 

At the college's request, Cindy provided medical documentation describing the extent of her disability and documented her need for oral interpretation support.  The college then proposed another alternative. All of Cindy’s professors would remain in one spot during class with their attention focused on Cindy to enable her to read their lips. Cindy rejected this alternative, as it did not adequately provide her with the degree of effective communication she needed to benefit from the classroom experience.

After receiving a written denial to her request for an oral interpreter, Cindy was referred to P&A by the Commission on the Deaf and Hearing Impaired. A meeting was arranged with P&A representatives, college administrators and their legal staff, as well as Cindy and her mother.  After researching the value and usefulness of other accommodation alternatives and negotiating costs for oral interpreter services with CDHI, an agreement was reached that benefited Cindy tremendously.  She and her interpreter developed a natural rapport that made interpreting much easier. Cindy is now fully participating in the college program and happily working toward her associate degree.

Case Story 4:  Becoming Marketable Again in a Competitive Job Market

Vinny is a 53-year-old man who had worked for twenty years as a computer mainframe systems programmer.  He has a significant hearing loss, congenital malformation of his hands and other physical disabilities. Fourteen years ago he sustained a back injury that resulted in multiple surgeries. Despite these injuries, Vinny maintained an excellent work record.  Two and a half years ago, while recuperating from his latest back surgery, he was found to have colon cancer. The surgery and subsequent cancer treatments left Vinny unemployed and out of a very competitive job market.

Earlier this year, Vinny received medical clearance to return to employment.  He left no job prospect unchecked, working with every employment agency he could find and searching for employment in newspapers and on the Internet.  Despite his twenty years of experience, he found that he was no longer marketable in the ever-changing computer field.  His skills had become outdated during his recovery from surgery and cancer treatments.

Vinny applied to the Bureau of Rehabilitation Services (BRS) for financial educational assistance to update his computer programming skills.  BRS denied his application for services because his disability was not a substantial impediment to his employability.  BRS used Vinny’s previous successful employment as a computer programmer to argue that he could become re-employed in the computer field by accepting any computer-related position, such as data entry. 

Vinny requested an Informal Review of his case and contacted P&A's Client Assistance Program (CAP) for assistance in preparing his case.  The CAP advocate helped him understand his rights, under BRS policy, to achieve his employment potential.  To prepare for the review, the advocate advised him to research educational programs that would best prepare him to re-enter the competitive job market for computer programmers. 

After hearing Vinny’s proposal, BRS reversed their decision of ineligibility at the Informal Review and determined his disability did in fact impact his employability.  BRS supported Vinny's computer training plan, which would bring him to a competitive level with other employment candidates. 

Case Story 5: Promoting Independence

John is a very proud and independent man.  He and his wife of 27 years lived in a nursing home due her terminal illness.  John knew his wife was benefiting from the nursing care provided at the facility, but was frustrated with the restrictive lifestyle.  He compared his nursing home experience to that of living in Mansfield Training School, where he had previously resided for more than 20 years.  He felt that he had already sacrificed enough of his freedom at that institution and wanted to return to the community.  John was faced with a dilemma: his wife needed the care she was receiving, but he felt frustrated living in an institution. He contacted P&A for assistance.

John and a P&A advocate discussed the dilemma and the consequences of a new living situation.  John decided to remain at the nursing facility so his wife could get the care she needed.  Advocacy efforts shifted from finding an alternative placement to improving conditions within his current setting.  Some positive changes were made which reduced John’s level of frustration.  A volunteer job was established at the nursing home that provided an alternate focus and filled his time.         

Sadly, John’s wife died from her illness. After a period of grieving her loss, John was ready to move on with his life and move out of the facility. Professionals, acquaintances, and family members who had grown protective and complacent, tried to convince him to remain in the nursing home, where they thought he could be taken care of and looked after.  That was not John’s plan.  This was his life and he wanted it on his terms.  He again asked the P&A advocate for assistance in implementing his own plan.

With lots of support, planning, and a bit of pressure on the service delivery system, a new living arrangement was found.  John moved into a new apartment on June 4, 2002, ready to start his new life.  Things were going smoothly until recently, when the minimal supports he was receiving were suddenly discontinued.  In jeopardy of losing his independence once again, P&A has stepped in to help John maintain the life he so adamantly wants in the community.

 Case Story 6: Transitional Services Go Awry

Ben completed high school at age 18 and decided to leave home.  He had experienced some learning problems in school, and did not master many of the basic living skills that most young adults learn during their teenage years.  He also had a mental health condition that caused him distress for most of his school years. He was prescribed psychiatric medication, but sometimes forgot to take his scheduled dose because "he was busy".  His peers found him "strange" so he turned to older people who hung out downtown to find friends.  He declared that his life was not what he wanted it to be but he did not know how to change it, and he did not like the suggestions others made for his life.

By the time he was referred to P&A's Protection and Advocacy for Individuals with Mental Illness (PAIMI) program, Ben was living in a respite situation in an apartment with two very incompatible older men.  He was getting in trouble with local police and even had a couple of criminal charges levied against him. His "friends" often set him up to do illegal things and left him abandoned to face the consequences alone.

Ben had a mental health agency case manager assisting him, but this assistance consisted mostly of taking him to the bank to withdraw spending money from his account. Unfortunately, the case manager did not use the trips to the bank as an opportunity to help Ben learn to manage his own finances. 

On a monthly basis, Ben's representative payee was depositing his entitlement checks into his bank account and was also giving the case manager regular checks to pay for his rent. However, the case manager failed to take responsibility to ensure that the rent was being paid. 

After Ben called P&A, advocacy staff met with Ben to ascertain what his goals were. They arranged for meetings with his service provider, and thoroughly discussed each of the goals and needs Ben had articulated. In a few short months, Ben had his own apartment, a daily routine established, someone to come in twice a day to make sure he was taking his medications, and assistance with grocery shopping and other daily living skills. The final problem to resolve was the bill for back rent presented by the mental health agency to cover nearly a year of "unpaid" rent.  By pointing out the failures of the agency and its representatives in meeting this young man's needs for assistance, and acknowledging that a new beginning was occurring, a compromise was agreed upon. Ben made a small payment to the agency and the balance of the unpaid rent was forgiven.  He now receives weekly budgeting assistance and is managing his finances successfully.

Case Story 7: Helping Students Belong

Vanessa is a bright young girl who was diagnosed with a mental illness at a very young age. During her childhood she had multiple and often long psychiatric hospitalizations due to aggressive and assaultive behaviors at home and at school. As a result, Vanessa’s school system classified her as severely emotionally disturbed and placed her in the most restrictive and segregated educational and residential settings. None of these settings met Vanessa’s needs.

The Department of Children and Families (DCF), through Hartford Behavioral Health, became involved in Vanessa’s life, attempting to bring Vanessa back home from a residential setting. When staff of Hartford Behavioral Health were unsuccessful in obtaining appropriate services from Vanessa’s school system, they contacted P&A. The P&A advocate assisted the parents in requesting a Planning and Placement Team meeting in order to obtain appropriate services for Vanessa.

Vanessa had been home without any educational program for three months following her discharge from the residential treatment program. The school system claimed that Vanessa could not be accommodated in her neighborhood school. Vanessa’s parents disagreed, seeking a regular school setting with necessary supplemental aides and services. With the help of P&A, the parents obtained an independent educational evaluation at the school system’s expense. The evaluation accurately identified Vanessa’s needs and suggested strategies for including her in her neighborhood school.

As a result of P&A and Hartford Behavioral Health’s intervention, Vanessa currently lives at home with her family, is succeeding academically in a regular educational setting, and has made a number of new friends. This summer she participated in a work program, and her employer has offered her a part time job as a research assistant. She has become a happy, outgoing and involved sixteen year old.

Defending the Rights of Vulnerable Populations

State and federal statutory mandates require P&A to defend the civil rights of vulnerable individuals and populations. P&A staff investigate allegations of abuse and neglect, and intervene on behalf of people whose fundamental rights are at risk.

  • During the 2002 fiscal year, P&A’s state mandated Abuse Investigation Division received a total of 1,344 reports of suspected abuse or neglect of persons with mental retardation. P&A staff conducted 260 investigations and monitored 908 investigations conducted by governmental and private agencies.  One hundred seventy six (176) of the 1,344 reports of abuse/neglect did not meet the statutory requirements for P&A investigation.

  • Information and referral services were provided to 199 individuals by Protection and Advocacy for Individuals with Mental Illness (PAIMI)    program staff and 203 individuals were provided direct representation by PAIMI advocates.

  • PAIMI staff designed and distributed a poster for outreach to individuals with mental illness in the prison system who are seeking help getting treatment or who believe they have been abused or neglected. These posters were mailed statewide through the public defender's system, social workers, jail diversion staff, the DOC managed care program, and other community agencies working with the families of prisoners.  Staff also conducted training for the Office of the Public Defender social workers on PAIMI and P&A services.

  • Pursuant to Connecticut General Statutes 46a-150 et seq., P&A received 15 reports of serious injury or death resulting from physical restraint or seclusion.   Reports were filed with P&A by the federal Center for Medical and Medicare Services and the State Departments of Children and Families, Education, Mental Health and Addiction Services, and Public Health. Ten (10) of the fifteen (15) reports, or 66%, involved children; five individuals or 30% died as a result of restraint or seclusion; eleven (11) incidents occurred in private psychiatric or residential treatment facilities; and four (4) occurred in public facilities. Five (5) of the incidents were investigated by P&A under its federal mandates.  P&A is monitoring the results of the investigation of eight (8) of the incidents.

  • Executive Order No. 25 requires the Commissioner of DMR to report all deaths of persons placed or treated under the direction of DMR to the Office of Protection and Advocacy.  It also established a Fatality Review Board for Persons with Disabilities (FRB). Appointed by the Governor and chaired by the Executive Director of the Office of Protection and Advocacy, the Board is charged with investigating the circumstances surrounding those deaths, which, in the opinion of the Executive Director, warrant a full and independent investigation.  The Board may also investigate deaths before DMR completes its internal mortality review.

  • The Fatality Review Board is comprised of a law enforcement professional with a background in forensic investigations, a representative from the Office of the Chief State’s Attorney, a mental retardation professional with a medical background, and a medical professional specializing in internal medicine and geriatrics. The Board attempts to ascertain the causes of death and whether such deaths were preventable, and also has the authority to issue formal reports on specific death investigations of broad interest to the mental retardation service system and the general public. The Fatality Review Board is required to report its findings to the Governor and members of the General Assembly’s Public Health Committee on an annual basis.

  •  During the past year, P&A established an advocacy program at Southbury Training School (STS).  This advocacy program is designed to focus on supporting the individual needs of STS residents by promoting independence and encouraging self advocacy. In addition, advocates conduct investigations involving allegations of client to client assault. During the 2002 fiscal year, thirty (30) STS residents received services from P&A advocates.

  • P&A PAIMI staff initiated a project to address concerns about the level of care and treatment offered to prisoners with psychiatric disabilities at the Northern Correctional Institution in Somers.  Personal interviews with prisoners and reviews of prison records revealed that prisoners with extensive mental health histories were either not receiving treatment at all or only intermittent treatment, and the conditions of Northern were not conducive to stabilization or treatment of a mental illness. Approximately 120 prisoners signed releases indicating that they would like P&A to review their mental health treatment plans.  A psychiatrist has been retained as an expert consultant by P&A to evaluate the treatment plans and advise on next steps.

  • P&A legal staff continued to pursue its complaint in federal court against the Connecticut Department of Corrections (DOC). The complaint alleges that the DOC violated the Protection and Advocacy of Individuals with Mental Illness (PAIMI) Act by refusing to release mental health records of prisoners who had either died while in the custody of the DOC mental health unit, or who had committed suicide. It was PAIMI’s intention to investigate the delivery of mental health services to prisoners in DOC custody who PAIMI believed might have been subjected to either abuse or neglect.  The case is pending in federal Court.

  • In Spring 2002, P&A legal staff filed a formal complaint against the Department of Mental Health and Addiction Services (DMHAS) to force the DMHAS to disclose certain documents related to internal investigations of the deaths of individuals in DMHAS facilities. DMHAS claims the documents are protected by the peer review privilege.  Peer review is the process by which a committee of medical professionals evaluates the care provided by other medical professionals. P&A attorneys are preparing the case for trial.

Case Story 1: An Issue of Guardianship

Kevin is a middle aged man with mental retardation and a limited ability to communicate.  He was a long-time resident of Mansfield Training School (MTS), admitted to the institution when he was just three years old.  Kevin's mother moved out of state while his father remained in Connecticut.  Neither parent had much contact with Kevin while he was growing up. 

In the late 1980's, as Kevin was being transitioned out of MTS, his father became his guardian.  P&A was involved and assisted Kevin during his transition out of MTS.  From the beginning, the guardianship responsibility proved challenging to Kevin’s father, and soon after Kevin's move to the community, his father relinquished guardianship. 

Although Kevin cannot communicate verbally, he is very expressive and engaging. With P&A's help and the support of dedicated staff who had come to know and care about him over the 34 years he spent at MTS, he was able to make a positive adjustment to community life.  He shared a residence with two women who enjoyed "spoiling him" by cooking for him and taking care of the things he couldn't do for himself.  He became very involved in his day program and counted his neighbors among his friends.

In an effort to bring Kevin together with his family members, P&A, in conjunction with the Department of Mental Retardation (DMR), contacted Kevin's mother.  Soon after the initial contact, his mother came to Connecticut for a four-day reunification visit.  She then became Kevin's guardian.

This year, Kevin became gravely ill with chronic renal failure and required immediate dialysis. His mother exercised her guardianship rights and tried to stop Kevin from receiving the medical treatments which would keep him alive. She said she thought it best to "let him go".  This came as a shock to the professionals on Kevin's Interdisciplinary Team (IDT) because everyone involved in his program was aware that Kevin had renal disease and his mother had previously advocated for the treatment.

A P&A attorney and Kevin's P&A advocate worked tirelessly to persuade Kevin's mother/guardian that Kevin had a right to receive the same medical interventions as persons without disabilities who have similar health problems. When their efforts were unsuccessful, P&A pursued removal of the guardian. At a probate court proceeding, the Judge heard from Kevin's physician that, with dialysis treatments, Kevin's prognosis was good and without it, Kevin would likely fall into a coma and slowly die. Kevin's mother was not present in court, but instead participated by speakerphone.

The judge made a decision to temporarily remove medical guardianship from Kevin's mother and appointed a new guardian. Kevin is currently receiving the medical treatment he needs and is maintaining his quality of life.

Case Story 2: The Work of P&A Investigators

Separate and distinct from P&A’s role as a civil rights agency, the Abuse Investigation Division (AID) of P&A handles allegations of abuse or neglect of persons with mental retardation between the ages of 18 and 59.  While much of the advocacy work done by P&A is open to public review and is heralded in this annual report, state statutes require that much of the work done by AID remain strictly confidential.  However, we are including a fairly typical abuse investigation case in this report to illustrate the important work being done by AID investigators. 

Susan is an adult with mental retardation. A neighbor of Susan’s called the local disability office in their town with concerns about Susan’s condition. Susan’s neighbor reported seeing Susan bundled up in warm clothing and standing outside in 90-degree heat and reported that Susan is often unclean and appears to be malnourished.  A worker from the town disability office contacted P&A’s Abuse Investigation Division to express concern about Susan and an investigation began.  In the course of the investigation the following facts were uncovered:

The initial interview

Susan was living in a neighborhood that was considered to be dangerous. On several occasions, neighbors refused to allow AID staff to enter the housing project where Susan lived. Susan's sister was verbally abusive and even threatening to AID staff, and refused to let AID staff interview Susan. Eventually the local police department had to be called to escort AID staff into Susan’s home. The police considered the danger level to AID staff and Susan so high that police remained on the scene until the interview with Susan was completed, and ultimately helped AID staff bring Susan to the hospital for medical care.

DMR’s provision of services prior to this investigation

Susan was a client of the Department of Mental Retardation.  She had been hospitalized in 1996 and although DMR was aware of her living situation, it did not follow up on her case. Susan’s caseworker at DMR was told by his supervisor not to bother checking up on Susan because she would just refuse services anyway.

Susan’s situation

Susan lived in an apartment that was infested with rats and roaches. Upon inspection, there was no food in her apartment. Susan’ s sister received Susan’s benefit checks and allegedly did not give any of the money to Susan.  Susan had to go outside and collect bottles and cans to earn money to buy food.  She stated that she suffered from seizures but had not been given anti-seizure medication (Dilantin) in the last year.  She was found with hair that was matted, unwashed, and clumped to her head. Roaches were breeding on the clothing she wore.  Most of Susan’s teeth were broken off at the gum line and were rotted.  Her fingernails were excessively long and discolored.  She smelled of urine. 

AID action

AID issued an Immediate Protective Service Request to DMR calling for DMR to  ensure a safe appropriate living arrangement for Susan pending the outcome of the investigation, and to also ensure that she receive a complete medical evaluation.  State statute requires that when AID is investigating an allegation of abuse or neglect and discovers that a person with mental retardation is “seriously in need of protective services”, it must notify DMR of the need for an Immediate Protective Service Plan.  The statute also stipulates that when DMR is so notified, it “shall not delay the commencement of protective services”.

DMR response

DMR located an emergency residential placement in a CTH for Susan immediately.  Susan was evaluated at the hospital the day she arrived and was released.  But the next day Susan was re-admitted to the hospital after having continuous seizures.  After her seizure activity was addressed, she was then admitted to the cardiac intensive care unit of the hospital where she received extensive intervention.

AID requests more from DMR

During Susan’s second hospitalization, AID issued the following Immediate Protective Services Request: DMR should convene an interdisciplinary team (IDT) meeting to plan for Susan’ s placement in a secure residential setting. The IDT should determine what services will be required, such as 24-hour supervision initially given her history, to address Susan’s needs.  The request also said DMR should immediately petition to remove Susan’s sister from being her conservator.

DMR’s response

Susan’s sister was removed as conservator and the Probate Court appointed a temporary limited guardian. Susan was eventually discharged from the hospital, spent a short time at a rehabilitation facility because she needed treatment for alcoholism, and then was moved to a DMR CTH.

DPH investigates hospital

As AID continued its investigation, doctors and other staff from the hospital were interviewed. The investigation uncovered problems at the hospital where Susan received medical treatment.  The doctor who examined Susan noted that she needed to be showered, and yet the hospital discharged her without making sure that had happened.  AID investigators also discovered that the hospital was unable to determine, from reviewing its own records, whether the hospital contacted DMR or followed up directly with Susan regarding her condition and necessary treatment.  The Abuse Investigation Division was concerned with the adequacy of the communication between the hospital and DMR, and with the treatment Susan received at the hospital.  AID referred this matter to the Department of Public Health for investigation.  AID then monitored the investigation done by the Department of Public Health.  The DPH investigation substantiated neglect on the part of the hospital where Susan had been originally taken by AID investigators.

 When the full investigation was concluded, AID suggested DMR ensure the following protective services for Susan:

  • She should receive services to ensure she takes her medications.
  • She should be given a dental examination and receive treatment as recommended
  • She should continue in her DMR residential placement.
  • She should be offered an appropriate day program.
  • She should continue to receive 24-hour supervision at her residence and at her day program.
  • She should receive follow up medical treatment from the hospital doctor.

 Susan is much happier now. She has a good home, a job and is getting the medical care she needs. As a result of the AID investigation, Susan is receiving appropriate and meaningful support services from DMR. AID continues to monitor Susan's situation to ensure that she does not fall through the cracks again. Her health and safety remain a primary concern.

 Support for Community Advocacy & Coalition Building

  • The Community Development Division (CDD) continued to pursue strategies that enhance community advocacy initiatives and empower individuals and families. Typical support activities include facilitating the partnerships between and among disability organizations, providing training and technical assistance with grant writing, community organizing, board development, strategic planning, filing for tax-exempt status and incorporation, and by-law development. Other activities include training on such substantive areas as I.D.E.A., the ADA, and Fair Housing.

  • This year, CDD provided support and technical assistance to twenty-six (26) organizations, including family advocacy organizations, independent living centers, and a variety of coalitions and support groups (see listing at the end of this section).  CDD also responded to fifty-six (56) requests for information and resource material specific to organizational development, non-profit management, and fund raising. CDD was also able to obtain more than $100,000 on behalf of advocacy-oriented disability organizations, and assisted in developing a proposal resulting in a $250,000 legislative appropriation to the Department of Public Health for respite care for medically-fragile children.

  • In response to the heavy demand by parents of children with disabilities for advocacy services, the Community Development Division developed a family manual entitled “Special Education is Not a Place”, and an organizing guide entitled “Organizing Parents: Building Family Advocacy Organizations”. The publication of these two documents constituted a major effort by CDD during 2002. Special Education is Not a Place is a seventy-nine page self-help manual that included a section for parents (“Becoming Your Child’s Best Advocate”) and a section for teenagers (“If Not You, Who?”).  Two-thirds of the manual covers a wide range of special education topics, from eligibility criteria and evaluations to transition services and assistive technology. The manual includes information about Section 504 of the Rehabilitation Act of 1973, the Americans with Disabilities Act, health-related resources, services for adults with disabilities (for students transitioning out of school), and a seven page listing of resources for families and youth. The manual is available in both English and Spanish. To date, three hundred (300) manuals have been distributed to families and family support organizations. 

  • The forty-five page parent organizing guide, written by a CDD community advocacy specialist, includes chapters on "What is a Parent Advocacy Group", "How to Establish a Parent Advocacy Group", "Establishing a Non Profit, Tax Exempt Organization", "Fund Development", "Meetings and Decorum", and "Supporting Parents and Creating Systems Change".  Thirty-five copies of the guide have been distributed to date.

  • A number of community advocacy organizations continued to receive significant support from the Community Development Division. These include the Americans with Disabilities Act Coalition of Connecticut, Inc. (ADACC), the Connecticut Women and Disabilities Network, Inc. (CWDN), Padres Abriendo Puertas, Inc. (PAP), African Caribbean American Parents of Children with Disabilities, Inc. (AFCAMP), the Citizen Advocacy Program of Eastern Connecticut, Inc., and the Connecticut Lifespan Respite Coalition, Inc. (CLRC). P&A is proud of the work these organizations are doing to raise issues, educate their constituencies, and advocate for positive change for persons with disabilities.

  • During the past year, CDD conducted outreach and training activities in Latino communities throughout the state including New Haven, Bridgeport, Danbury, New Britain, New London, Meriden, Torrington, Norwich, and Cos Cob. A total of 202 hours of training was provided to these communities (including Hartford training) with 1,120 individuals attending, mostly Latino.

  • A CDD staff member was certified as a USE (Understanding Special Education) trainer this year. USE is the updated version of what previously had been called APLE (Action Planning in Education) training.

  • This past spring, the CDD and Case Services Division advocates again collaborated on a project with Padres Abriendo Puertas to train Latino parents in Hartford to be peer advocates for other Latino parents. Referred to as the “Veteran Parent Training Course”, the project ran for eight weeks at the Betances Elementary School in Hartford. Eight parents graduated from the course and are now providing support to other parents with children who are receiving special education services.  This was the second such course offered to Hartford parents by P&A (the pilot was offered in 2001). A third course is currently underway at a facility run by the Greater Hartford Association for Retarded Citizens for twelve parents who have children in the Hartford public schools.

  • CDD staff spear-headed an exciting project involving a number of different organizations. Termed the ABACUS Project, a collaborative effort involved the Connecticut Women and Disabilities Net-work, the ADA Coalition of Connecticut, Progressive Attitudes, and the project’s lead organization, Qualidigm.  Funding for the project, which is addressing the lack of access to mammography services by women with disabilities, came from the Susan G. Komen Breast Cancer Foundation.

  • The Connecticut Life Span Respite Coalition, Inc. (CLRC) was also supported by CDD. CDD staff assisted the twenty-member planning committee of public and private agencies and families in organizing the group and obtaining funding to hire staff and conduct a statewide mapping of respite services.  The organizing process also included forming a board of directors and creating organizational documents. CLRC is now a private, non-profit corporation whose goal is to actively promote, develop, support, and advocate for quality, coordinated, statewide respite care that strengthens and maintains family unity across the lifespan.

  • Other Groups P&A supported during the year with technical assistance and one-to-one consultation: People First of Connecticut, Connecticut Brain Injury Association, Parent to Parent of Connecticut, Self Advocates Unlimited, Inc., Yale University’s Children’s Services Unit, Learning Disabilities Association of Connecticut, Sail Connecticut, Spina Bifida Association of Connecticut, Community Works of Connecticut, Connecticut Valley Girl Scouts, REACHOUT, Parent to Parent of Lower Fairfield County, Connecticut Women’s Health Campaign, Madison School District’s Special Education Parent Advisory Committee, and Boundless Playgrounds

Systems Change Initiatives

 PABSS and CAP collaborate on One Stop Project

During the course of the 2001-2002 year, P&A’s Client Assistance Program (CAP) and the new Protection and Advocacy for Beneficiaries of Social Security (PABSS) Program collaborated on a project to provide information and technical assistance to the staff of the Connecticut’s eighteen One Stop Centers.  During 2002, 10 of the 18 centers received training from P&A.  P&A plans to visit the remaining 8 One Stop Centers during the course of the coming year. 

While meeting with One Stop staff, P&A shared information about the CAP and PABSS programs. Advocates also provided information about Title I of the Americans with Disabilities Act, the Ticket to Work and Work Incentive Improvement Act of 1999, the Benefits Counseling Program administered by the Bureau of Rehabilitation Services (BRS), the Medicaid for the Employed Disabled program administered by the Department of Social Services, the availability of independent living services through Connecticut’s five independent living centers, and the vocational services provided by BRS and the Board of Education and Services for the Blind. Posters and brochures about P&A’s programs and other state programs were distributed.

Residential Care Facilities Outreach and Education Project

This past summer P&A’s Protection and Advocacy for Individuals with Mental Illness (PAIMI) program initiated a project to better inform individuals living in residential care facilities of their rights and the services available to them.  Residential care facilities are homes that originally were licensed by the State Department of Public Health as Homes for the Aged, but now house a sizable number of individuals with psychiatric disabilities. The homes primarily provide board and care for residents at a monthly rate subsidized by the Department of Social Services.

The project was first brought to the attention of P&A by the PAIMI Advisory Council, who were concerned about the lack of information available to home residents, many of whom had a diagnosis of mental illness. P&A decided to develop a pilot project, employing individuals with a history of mental illness as peer educators.  The pilot program will run from July 1, 2002 through December 31, 2002.

The original goal was for each of the Peer Educators to be assigned to a residential care facility. They would visit the facility regularly and develop a relationship with the residents there. The residents would be supported in their attempts to become self advocates, and encouraged to get involved in community activities. Over time, weekly group meetings would be held, and information shared about voting rights, medication issues, work incentives, money management issues, and self advocacy.  A number of facilities were approached by PAIMI staff, and initially only one expressed a willingness to participate. Facility managers typically responded that the residents of their facility would not be interested in the project.

Currently, one Peer Educator is working at a residential care facility, and his presence is being fully supported by facility management.  He has arranged for training for residents on medication issues, assisted residents on how to use the Internet to obtain information and conduct research, and even taught residents how to use public transportation to access community services.

A second Peer Educator has visited fifteen (15) residential care facilities in the Hartford area to disseminate information about rights and services. She has been warmly received by facility managers, and in the course of her visits has conducted an on site survey covering such items as the posting of rights information within the home, the availability of private space to receive visitors and make telephone calls, the degree of structural accessibility of the home, and the availability of storage space for personal items. Over time, interest in the work of the Peer Educator grew, and PAIMI staff was invited in by six of the Hartford area facilities to conduct more extensive training workshops for residents. One facility has since expressed an interest in having a Peer Educator visit on a regular basis.

The third Peer Educator was assigned to a home in the New Haven area. There was initial resistance by facility manage-ment, however, who felt that weekly visits were not warranted. The Peer Educator has been allowed in the home on a monthly basis to run workshops for residents. She has also begun conducting visits to other facilities in the New Haven area, using the same strategy that was employed by the Hartford area Peer Educator.

At the end of December, an evaluation will take place to determine the efficacy of extending the pilot project for another six months. It seems clear. however, that the initiative has filled an important void in getting relevant information to individuals living in residential care facilities.

Olmstead Response

As the State moved ahead to address the community integration mandate of the Americans with Disabilities Act and the 1999 Olmstead Supreme Court decision, P&A increased its involvement in a variety of coalitions and committees working to enhance community living opportunities. Over the past year P&A has been actively involved with the Olmstead Coalition, the Long Term Care Planning Committee, the Steering Committee for the Nursing Facilities Transition Grant, and the Steering Committee for the Real Choice Grant.

In March of 2002, the State Long Term Care Planning Committee (LTCPC) accepted an Olmstead Plan, presented to it by the Community Options Task Force. Considered along with the plan was a Supplementary Report written by a majority of the Task Force members who felt that the state plan was not sufficient. The plan and the supplementary report were subsequently forwarded to the Governor. The Long Term Care Planning Committee, which includes a representative from P&A, is charged with developing action steps to implement the State’s Olmstead Plan.

During the course of the year the State received a Nursing Facility Transitions Grant from the Center for Medicaid and Medicare (CMS) in the U.S. Department of Health and Human Services. The Connecticut Association of Centers for Independent Living (CACIL) is administering this grant, which began in the fall of 2001. Its goal is to transition one hundred fifty (150) individuals out of nursing homes and into community living arrangements over the next two years, and to address the systems issues that tend to keep people in nursing homes.

The State has also received a federal Real Choice Grant from CMS to build the capacity within the State to support informed “decision making, independent living, and a meaningful quality of life for persons with disabilities across the life span”. The University Center for Excellence (UCE) at the University of Connecticut will administer the grant, which includes the development of three (3) model communities in Connecticut.

The Olmstead Coalition, an advocacy group funded by the State Council on Developmental Disabilities, continued to watchdog the development of the plan, and is monitoring its implementation.

ADA Compliance

A study of ADA compliance by Connecticut municipalities was commissioned by P&A this past year. The study was conducted by the ADA Coalition of Connecticut in conjunction with Independent Living Resources, Inc.  A representative sampling of twenty-five (25) Connecticut communities received on-site visits in late winter and early spring.

While the study found that many towns had made good faith efforts towards ADA implementation, it concluded that many municipalities had not met the Act’s administrative requirements for self-assessment, planning, and policy development. In addition, small, relatively inexpensive modifications that could significantly increase accessibility to buildings and programs have not been completed, and town officials typically have to scramble to develop on-the-spot responses to the needs of residents with disabilities.

In June 2002, P&A and the Connecticut Conference of Municipalities collaborated on a conference for municipal coordinators during which the results of the study were shared.  Two meetings were held this fall with municipal coordinators to consider interest in creating a municipal ADA Coordinators network. Fifteen coordinators attended the first meeting, and thirty attended the second. A Steering Committee has been established, and two co-chairs selected, one from a large city and one from a small town. The fledgling network of coordinators will share information about innovative practices, provide support to local coordinators, and arrange for training and technical assistance.

CAD v. Middlesex Hospital, et al

P&A continued its monitoring responsibilities of general hospitals pursuant to the CAD v. Middlesex Hospital consent decree. The consent decree addresses the lack of effective communication available to persons who are deaf and hard of hearing in Connecticut’s 32 acute care hospitals.  Of the 32 hospitals to be inspected for compliance, 26 have had on-site inspections with a projected completion date of February 2003 for the remaining eight. 

All hospitals inspected have been substantially compliant. The common non-compliance issues are inadequate communication assessments (required by consent decree) and the absence of a basic dialogue with patients and companions resulting in frustration on the part of patients and companions and hospital personnel.  P&A has made recommendations to the hospitals following each inspection to further improve the delivery of services and supports to patients and companions who are deaf and hard of hearing.  The hospitals have been very cooperative and open to P&A’s recommendations. In addition to on-site inspections, P&A staff are in the process of investigating two individual complaints that hospitals have violated the consent decree.

Every1Counts

Every1Counts is a voter accessibility project that focuses on the rights of individuals with disabilities to vote.  In addition to focusing on the physical and communication accessibility of polling places, the project encourages people with disabilities to register and vote.  During the 2002 fiscal year, P&A staff developed and implemented training that teaches voters with disabilities about registering to vote and the election process.  It also describes the actual Election Day procedures, from bringing a picture ID card with you to the polls, to the mechanics of using the voting machine. A question and answer session is incorporated into each training to allay fears about voting for the first time.  Project staff also attended an annual Connecticut Registrars of Voters Conference to provide training on accessibility, election laws protecting the rights of persons with disabilities and welcoming voters with disabilities at the polls. 

 Every1Counts emphasizes the importance of exercising the basic fundamental right to vote.  Voter registration opportunities are provided at each Every1Counts event.  During the past several elections including November 2002, many persons with disabilities registered to vote through the Every1Counts project and voted for the first time. Many of these individuals reported that they will vote in every election and would not miss the chance to have their voices heard. Carol Grabbe (pictured previously) cast her vote on November 5th and she is one person who is committed to vote in every election in the future.

Library Inclusion for Everyone

 During the past year, P&A partnered with the University of Connecticut’s A.J. Pappanikou Center and the Connecticut State Library on “Library Inclusion for Everyone” (LIFE) - a project to improve the accessibility of Connecticut libraries for people with disabilities. LIFE seeks to provide information and technical assistance to librarians as they work to make their services and programs welcoming to all people, including those with disabilities.

Case Story 1: Epipens Becomes Legislative Issue

Amy called a local preschool to enroll her son, Todd, for the upcoming school year.  The school indicated that they had space and the necessary paperwork was completed.  Amy then informed the school that Todd had a severe nut allergy and required the use of an Epipen, an emergency auto-injectable device that would have to be administered by the preschool if he were exposed to nuts. Amy, a nurse, offered to train the staff in the use of the Epipen and provided literature about food allergies and the simple process of Epipen administration.  The pre-school, however, withdrew its acceptance citing liability and staff reluctance to administer the Epipen as reasons for the withdrawal. Amy attempted to secure a placement in other local daycare settings but was denied services because of the Epipen. 

Amy contacted P&A for assistance with encouraging the daycare to accept her son. Research about the issue and contact with the Food Allergy Network in Connecticut, revealed a large number of families who had experienced same rejection at day care facilities all over Connecticut. 

In response to this problem, P&A proposed legislation to prohibit child day care centers from denying services to a child because he has a known or suspected allergy or a prescription for an automatic prefilled cartridge injector or similar device that administers medication to treat allergic reactions (for example, an Epipen). Fourteen (14) families and local physicians testified in favor of the bill and worked with P&A to educate legislators from all areas of the state. Beginning January 1, 2003, Public Act 02-84 (House Bill 5289) prohibits day care centers and group day care homes from denying such services.  Amy sons, pictured on page 23, both have food allergies and are beneficiaries of the new legislation.

The local day care center that had originally rejected Amy’s son recently contacted her to schedule a training on the use and administration of the Epipen.

Legislation 2002

P&A monitored, commented on, and educated policy makers on many legislative proposals.  A weekly legislative update was sent via e-mail to interested parties and the agency web site was updated with legislative schedules, information on proposed legislation affecting people with disabilities and other important information about the Connecticut General Assembly.  P&A's Legislative and Regulations Specialist met with many small groups of disability rights advocates to teach them about the legislative process and how to influence their lawmakers. 

As noted above, P&A successfully proposed legislation to prohibit child day care centers from denying services to children because they need to use an automatic pre-filled cartridge injector that administers medication to treat allergic reactions. Day care centers and group day care homes will be prohibited from denying services beginning January 1, 2003.

The following is a brief sampling of the types of legislation that P&A followed closely during the 2002 session of the General Assembly:

  • legislation requiring the Office of Policy and Management to conduct a comprehensive needs assessment of the unmet long-term care needs in the state and project future demand for such services. The legislation specifies that such assessment shall include a review of the Department of Mental Retardation's waiting list.  (Special Act 02-7, House Bill 5169)

  • legislation requiring the Commissioners of the Department of Social Services and the Department of Mental Retardation to submit a proposal to the General Assembly’s Public Health Committee “to implement the recommendations of the Advisory Commission on Services and Supports for Persons With Developmental Disabilities.” The legislation also required the Commissioner of the Department of Social Services to “submit a plan to provide services to persons with traumatic brain injury to” the General Assembly’s Public Health Committee.  Both reports are due October 1, 2002.  (Special Act 02-14, Senate Bill 586)

Advisory Councils, Boards, Task Forces and Committees

that P&A staff participate on in order to improve services, expand resources, and protect individual rights:

Lifespan Respite Coalition
Olmstead Coalition

DMR’s Investigation Division Advisory Board

State Mental Health Planning Council

DMHAS’ Work Group on Advanced Directives

Birth To Three Interagency Coordinating Committee

Steering Committee of the Nursing Facilities

Transition Grant

Independent Mortality Review Board

Governor’s Task Force on Justice for Abused Children

Steering Committee of the Real Choice Grant

Youth Leadership Forum

Family Support Connecticut

Legal Services Training Coalition

Children with Special Health Care Needs

DOIT Connecticut Portal Advisory Group

Website Accessibility Committee

Employability Committee

Children’s Services Focus Team

DPS’ Building Code Training Council

Special Education Advisory Council

DSS’ Adult Protective Services Collaborative

Manchester Community College’s Disabilities

Specialist Program Advisory Board

Sex Offender Policy Advisory Council

BESB Advisory Council

Connecticut Developmental Disabilities Council

ADA Coalition of Connecticut

State Rehabilitation Advisory Council

Children’s Mental Health Advisory Council

Advisory Commission on Services and Supports

   for Persons with Developmental Disabilities

Fatality Review Board

UCE Consumer Advisory Group

DPH Hospital Pamphlet Work Group

United Connecticut Action Neighborhood (UCAN)

Connecticut Coalition for Inclusive Education

DMR’s Family Respite Center Advisory Board

Greater Hartford Local Interagency Coordinating Council

Learning Disabilities Association of Connecticut

PCSW First Congressional District Advisory Committee

 

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Content Last Modified on 9/20/2004 7:30:39 PM