CT Council on Developmental Disabilities

A Spring Series on

Life-Threatening
Public Policy

Seven Friday Mornings
April 11 through June 27, 2008
10:00 a.m. to 2:00 p.m.
Lunch Included

Institute of Technology and Business Development
Central Connecticut State University
185 Main Street
New Britain, CT

sponsored by:
Council on Developmental Disabilities
460 Capitol Avenue, Hartford, CT 06106
(860) 418-6160 (voice); 418-6172 (TTY)
1-800-653-1134
http://www.ct.gov/ctcdd
http://www.ctcdd.org

Life Threatening Public Policy

Public policy that threatens the lives of people with disabilities is not new, or even a modern, concept. However, the legitimization of policies and methods that end up killing people in today’s world is unprecedented. We hope that our seven-part series will generate a nucleus of people in Connecticut who will be able to recognize public policy which threatens the lives of people with disabilities and who will be prepared to challenge such policy.

The Life-Threatening Public Policy series is scheduled for seven Friday mornings, from April 11 through June 27, at the Institute of Technology and Business Development, New Britain. Sessions are from 10:00 a.m. to 2:00 p.m. each session, with lunch and parking provided.

During 2008 there will also be several additional part- and full-day workshops on specific topics to enhance the Series.

The program of speakers will be organized by the Social Role Valorization (SRV) Implementation Project of Massachusetts, with the Connecticut Council on Developmental Disabilities providing funding and handling arrangements for registration, meals and meeting site.

A class of 40 people will be selected for the entire program, with an additional ten permitted to audit each session. The Series is designed for members of hospital ethics committees and patient advocates but self-advocates, parents, providers and the public are invited to participate.

The workshops are FREE but registration is required so that we can plan lunch.

Program

April 11: A Lesson From History: The German Euthanasia Program And Its Echoes In
Our Own Day
Presenters: Jack Yates
Jack Yates, Associate Trainer, Social Role Valorization Implementation Project, Worcester, MA. Jack will focus on the systematic killing of people with impairments by the medical establishment in Germany during World War II. Participants will examine the origins of the German euthanasia program, it opponents, and its parallels today in genetic testing and selective abortion.

April 25: Social Devaluation And The Killing Thought
Presenter: Jo Massarelli, Director, Social Role Valorization Implementation Project, Worcester, MA. Jo will explore why people treat each other so poorly, even to the point of wishing the other dead.

May 2: Common Life Experiences Of Human Service Recipients And How They Contribute
To Their Deaths
Presenter: Jo Massarelli. Jo will trace the common “wounding” life experiences of people who are recipients of human services. If one is devalued in our society, one is likely to be a recipient of human services, which tends to bring with it patterns of life experiences that are limiting, wounding and even life threatening. Issues raised will include how segregation and congregation can threaten lives and the lethal effects of negative imagery, social isolation, and life-wasting activity.

May 16: An Exploration Of Some Fundamental Issues Of Restraint As A Human Service
Technique
Presenter: Marc Tumeinski, Trainer, Social Role Valorization Implementation Project, Worcester, MA. Marc will explore the reality of extreme vulnerability of those likely to be restrained and the troubling moral questions raised by the use of restraints in human services. Deaths from the use of restraints has been widely publicized at the same time that restraint is increasingly being accepted, taught and used in a wide variety of fields.

May 30: Quality Of Life And Medical Deathmaking
Presenter: Jo Massarelli. Jo will analyze the concept of “quality of life” and the ways in which current medical practice has used it to endanger the lives of people with disabilities. Modern medicine has become a paradox. On one hand, medicine is heralded for life saving treatments and, on the other hand, it is complicit in abbreviating the lives of those whom it deems to have a poor “quality of life.”

June 13: Euthanasia And Physician-Assisted Suicide
Presenter: Stephen Drake, Not Dead Yet. Stephen will address the growing climate of acceptance for self-inflicted death, especially if it is done with the help of a medical professional, death brought about through surrogate decision-makers on the basis of “she/he would have wanted,” and how redefining personhood, humanness, futile care, medical treatment, death and end-of-life heighten dangers to people with disabilities.

June 27: Constructive Responses To Life Threatening Public Policy
Presenter: Jo Massarelli and Jack Yates. Jo and Jack will draw together the themes of the Life Threatening Public Policy topics and look for patterns among the patterns. Suggestions will be made for constructive responses and ways of standing in the way of life threatening public policies with examples of organizations which have taken stands.

Participants will be encouraged to keep a private journal on the series. Each
session will conclude with lunch discussion period and offering some points
for writing and reflection.

Life Threatening Public Policy: Registration Form

Please mail or fax your registration form to:

Connecticut Council on Developmental Disabilities
460 Capitol Avenue
Hartford, CT 06106
(860) 418-6003 (FAX)

Deadlines

For an individual session: We must receive your registration no later than 4:30 p.m. on the Friday before the program you plan to attend.

Name: _______________________________________________________

Organization (If Applicable): _____________________________________

Address: _____________________________________________________

_____________________________________________________

Phone: _____________________ E-mail: ________________________

Please check here _____ if a personal assistant will attend the program with you.

Please check below to indicate which dates you plan attend:

___ April 11 ___ May 30

___ April 25 ___ June 13

___ May 2 ___ June 27

___ May 16

Meals
Each session will end with lunch to be served at 1:00 p.m. Examples of the
types of sandwiches are: assorted 6” hard roll and wraps; turkey, ham, roast
beef, veggie and tuna; American cheese, lettuce, tomato, mayo and mustard
packets; bag of chips and cookies; assorted cans of cold soda and bottled
water. If you need to request an alternate menu, please indicate your dietary
request below:

Accommodations
Please check here _____ to request a American Sign Language (ASL)
Interpreter, or contact the Council’s office by phone, TTY or e-mail. Please
make your request by March 20t if you plan to attend the entire series or two
weeks before the session you plan to attend.

Please use the space below to request additional accommodations to make
the series accessible to you.

For additional information, please contact:

Connecticut Council on Developmental Disabilities
460 Capitol Avenue
Hartford, CT 06106
(860) 418-6160 (voice), 418-6172 (TTY)
1-800-653-1134 (toll-free in CT)
e-mail: Ed.Preneta@ct.gov

Directions
Institute of Technology and Business Development
Central Connecticut State University
185 Main Street
New Britain, CT 06051

From Hartford:

I-84 heading West ( toward Waterbury)
Exit 35 (left lane exit) onto Route 72 East. Take third exit, marked Main Street. At the end of the exit take a right and travel one block to Chestnut Street. Turn right onto Chestnut Street (Municipal Parking Garage will be on your right) and travel one block to Main Street. Turn right onto Main Street and ITBD is one block on the right, but park in the Municipal Garage.

From Waterbury:

I-84 heading East (toward Hartford)
Exit 39A onto Route 9 South. Take Exit 27 – Chestnut Street (left lane exit). At the end of the exit, take a right onto Chestnut Street (Municipal Parking Garage will be on your right) and proceed through the second light to Main Street. Turn right onto Main Street and ITBD is one block on the right, but park in the Municipal Garage.

From New Haven:

I-91, Route 15 or Route 9 North (toward Hartford)
Travel North on Route 9 to Exit 26 (Downtown New Britain exit). Go straight at the end of the exit and left at the second traffic light onto Chestnut Street (Municipal Parking Garage will be on your right). Go through one traffic light to Main Street. Turn right onto Main Street and ITBD is one block on the right, but park in the Municipal Garage.

FREE PARKING: Bring your parking ticket to the meeting where it will be stamped for FREE PARKING.

From the Municipal Parking Garage back to the highways:

At the exit of the garage, left onto Chestnut Street.

To I-91 North and South and Route 9 South:
At 1st light go left onto the overpass.
At next light, at top of overpass, turn right to enter Route 9 South. There are exits for I-91 North and South from Route 9 South.

To I-84 East and Route 9 North:
Go through 2 traffic lights on Chestnut Street.
Route 9 North is a left turn past the shopping plaza. There is an exit for I-84 East from Route 9 North.

To I-84 East and West:
At 2nd light at bottom of overpass, turn left onto East Main Street.
At next light, go left onto Route 72. There are exits for I-84 East and West from Route 72.

Posted by Ed Preneta at 4:55 PM | Comments (0)

The CT Council on Developmental Disabilities announces the following initiatives for 2008:

$2,200 To publish and distribute two Cliff Notes-like guides to help parents navigate through the development of an individual education plan (IEP) with their local education agency. “The IEP Guide” and “Special Education Made Easy” will be printed in English and Spanish and distributed to 1,000 parents. The guides were created in collaboration with the Department of Developmental Services, State Department of Education, the CT Family Support Network and parents.

$42,185 To support grassroots parent organizing. This initiative will inform and educate families about their rights, services and supports. Activities will include gathering information from parents fed up with the lack of enforcement of the Individual with Disabilities Education Act (IDEA) and failure of the due process and complaint procedure. Advocacy will include strengthening legislation governing the use of restraints in schools. A study on the current use of restraints will be explored. A conference, training or workshop will be held on positive behavioral supports and interventions. The CT Council will start-up a Mothers (or Parents) From Hell organization to organize and support parents who want to aggressively advocate for appropriate education, community acceptance, services, rights and entitlements.

$33,315 To support a part-time staff person for the CT Family Support Council (FSC). The FSC was established in 1994 to promote establishment of a comprehensive, coordinated system of family support. The FSC has been successful in establishing and securing funding for a CT Family Support Network to support families directly but the FSC has not been successful in securing permanent funding to staff the FSC. A part-time staff person will enable the FSC to maintain the representation of the interests of families on various, boards, committees, councils, hearings, task forces and workshops while the FSC pursues permanent funding.

$5,000 To support the Disability Advocacy Collaborative’s 2008 Disability Convention and Expo in Hartford. The CT Council has supported the Collaborative for 4 years, including the first Convention and Expo in 2006. The Convention provides candidates for national, state and local elections to present their positions on disability issues. 2008 is a presidential election year. The Convention is also an exposition for providers of goods and services to people with disabilities and their families.

$8,500 To continue a Robot Hide and Seek competitive robotics event at the Fire Fighting Home Robot Contest at Trinity College, Hartford, on April 12 and 13, 2008. This is the second year the CT Council has supported international competition on the design of robots that can find a child with intellectual disabilities who is hiding in a burning building. The event also includes a symposium for parents of children with disabilities on interactive robots. The symposium will be held on April 12, 2008 from 2:00 p.m. to 3:00 p.m. The symposium will be presented by Dr. Francois Michaud of the University of Sherbrooke, Quebec, Canada. Dr. Michaud has extensive experience designing robots that interact with children with intellectual disabilities.

$10,000 To support the Disability Resource Network, Ansonia, to enable youth leaders with developmental disabilities to participate in activists activities locally, statewide and nationally. Youth with developmental disabilities under the age of 21 who are emerging leaders will attend and participate in demonstrations, protests and rallies concerning issues of importance to people with developmental disabilities and their families.

$32,400 To support Kids As Self Advocates (KASA), a grassroots self-advocacy organization for adolescents and young adults between the ages of 13 and 24. The CT Council has supported KASA for 6 years. KASA works to empower members to make informed decisions and speak for themselves but does not engage in civil disobedience. Support for KASA is a CT Developmental Disabilities (DD) Network event. The Office of Protection and Advocacy (P&A), Hartford, administers the CT Council’s funds for KASA and KASA is housed at the University Center for Excellence in Developmental Disabilities (UCEDD) at the University of Connecticut Health Center, Farmington. The CT Council, P&A and UCEDD are sister agencies that make up the CT DD Network.

$36,725 To support a “Life Threatening Public Policy” series of 15 workshops targeting hospital patient advocates and ethics committees. Self-advocates, parents, providers and the public is also invited to participate in many of the workshops. The series will address growing acceptance of public policy that threaten the lives of people with disabilities. These policies include altruistic filicide, growth attenuation treatment, suicide tourism, withholding food and hydration from newborns with disabilities, genetic testing and selective abortion, eugenics, death by committee, and the use of painful and potentially deadly aversive electric shock. Several of the workshops will be conducted by the Social Role Valorization Implementation Project, Worcester, Massachusetts. Several of the workshops are also co-sponsored by the CT DD Network. The workshops begin on March 5, 2008 with a presentation and book signing on Citizen Advocacy by Tom Kohler, Savannah, Georgia, at the Farmington Public Library from 2:00 p.m. to 4:00 p.m. Mr. Kohler will tell the story of Waddie Welcome and sign his book Waddie Welcome and the Beloved Community. While Waddie was dying, his circle of friends took turns visiting everyday, six visits a day, for 29 days.

The CT Council will address the plight of people with severe and multiple disabilities, particularly people with communication difficulties, who use personal assistants and who reside in institutions, when they are sent to emergency rooms. Such people are often dropped off and left alone. Because they cannot articulate and do not have assistants, they are often the last to be addressed with no one to help with communication. The CT Council will work with the Department of Public Health to address this issue.

The CT Council will also explore health care issues associated with aging with disabilities as part of the Department of Social Services Aging and Disabilities Resource Center initiative.

The CT Council will work with the CT DD Network on mortality review follow-up.

$70,000 To work with Connecticut Public Television (CPTV) to redesign the CT Council’s 2006 “Able Lives” television series on inclusion in the community into a “how to” toolkit for distribution to policymakers, parent and self advocacy groups, educators and schools, libraries, business decision-makers and community leaders. The toolkit will be based on the original 10 half-hour “Able Lives” episodes and include creation of a master 2 DVD set featuring all 10 episodes. “Able Lives” is a trademark of the CT Council on Developmental Disabilities. In 2007, “Able Lives – Inclusion Works!” was a series of short vignettes and radio advertising. The CT Council also loaned the name “Able Lives” to the Department of Social Services for the production of “Able Lives, Incorporated,” a series of half-hour episodes on employment of people with disabilities funded under ConnectAbility, the state’s Medicaid Infrastructure Grant.

In addition the CT Council will work with ConnectAbility to address transportation linked to employment and distributing information about employment related incentives and benefits.

Through the state’s “Money Follows The Person” initiative with the Department of Developmental Services and the Department of Social Services, the CT Council will be exploring increasing the availability of personal assistants and personal managers, including better pay and health benefits, and a system for helping people with recruitment, interviewing and obtaining backup assistants.

Other initiatives include exploring how to increase housing opportunities, becoming active in housing coalitions and working with architects, developers and landlords on incorporating universal design. The CT Council will continue working with the CT DD Network on influencing state and local disaster preparation planning.

The Connecticut Council on Developmental Disabilities is a federally funded, governor appointed Council comprised of people with developmental disabilities, family members, service providers and state agency representatives whose mission is to promote the full inclusion of all people with disabilities in community life. The Council is charged by federal statute to engage in advocacy, capacity building and systemic change activities on behalf of people with developmental disabilities, their families and their communities.

Posted by Ed Preneta at 3:12 PM | Comments (1)

Connecticut residents are firm believers that children with developmental disabilities should attend regular public school classes, according to a new statewide survey conducted by the Center for Survey Research and Analysis (CSRA) at the University of Connecticut for the Connecticut Council on Developmental Disabilities. The survey shows that 83% of residents who do not have any friends or family members with a developmental disability would want their child to be educated in the same classroom with children with disabilities. To provide this opportunity, 90% believe that individual teaching assistants should be available for children with disabilities.

Children with Developmental Disabilities Should…

Support
Be educated in regular classrooms 83%
Have individual teaching assistants to enable them to attend regular
public school classes 90%

The survey also revealed that only 24% of residents are aware of the law that allows physical restraints and seclusion to be used on children with disabilities in public schools. After hearing about the law, 89% believe schools should be required to document all uses of physical restraints and seclusion for these children.

“The public sees a need to protect our children and also to provide a high quality education for all of our children, regardless of their abilities," said Nancy Taylor of Canton, Chair of Public Information and Education for the Council. "People clearly see that everyone benefits when children with disabilities are educated alongside their non-disabled peers and they support state intervention to make sure this becomes a reality.”

Career Training

Nearly all state residents believe that individuals with developmental disabilities can be successful members of their communities with proper training and supervision. Ninety-six percent agree that these individuals can learn to work and socialize with others. It is, therefore, not surprising that 99% of residents believe that it is the state’s responsibility to fund programs to help these individuals learn job and career skills. At the same time, 94% of residents feel that private industry should also bear some of this responsibility by making an effort to employ individuals with disabilities.

Residents Believe Both the State and Private Industry Should Support those with Disabilities

Agree
Connecticut should provide people with developmental disabilities
job skills programs 99%
Private companies should make an effort to hire people with
developmental disabilities 94%

Transportation

To enable work and social opportunities, 98% of residents agree that the state of Connecticut should provide transportation services for people with disabilities, and 69% of residents agree that people with developmental disabilities should be able to apply for a driver’s license.

Accessibility

“The results are very encouraging that Connecticut residents seem extremely supportive of inclusion for people with disabilities in all aspects of society,” said Taylor. The survey shows that 99% of residents agree that people with developmental disabilities should have access to public places, 97% agree that there should be access to private spaces, with 90% agreeing that people with disabilities should have access to places of worship. “These results are testimony to the success of the Americans with Disabilities Act and the accomplishments of the disability rights struggle,” said Ms. Taylor. “The Americans with Disabilities Act calls for the most basic freedoms: access to public buildings, the opportunity to live independently, and the chance to work to support one’s self and one’s family” she said.

This survey was conducted by the Center for Survey Research and Analysis (CSRA) at the University of Connecticut, among 501 adult residents of Connecticut from August 22 – September 10, 2007. The data are weighted according to U.S. Census figures for age, race and ethnic background, education, and income in Connecticut, as well as by household selection probability. A random-digit-dial technique was used to select respondent households (sampling both listed and unlisted telephone numbers). Respondents were selected randomly within households. The margin of sampling error for the survey is + 4.4 percentage points.

The Connecticut Council on Developmental Disabilities is a federally funded, governor appointed Council comprised of people with developmental disabilities, family members, service providers and state agency representatives whose mission is to promote the full inclusion of all people with disabilities in community life. The Council is charged by federal statute to engage in advocacy, capacity building and systemic change activities on behalf of people with developmental disabilities, their families and their communities.

A copy of the Council on DD/UCONN Center for Survey Research and Analysis report can be downloaded from the Council's website at www.ct.gov/ctcdd

Posted by Ed Preneta at 10:11 AM | Comments (0)

The Connecticut Council on Developmental Disabilities is sponsoring a series of fifteen (15) workshops on “Life Threatening Public Policy” during 2008. The series is directed at members of ethics committees and patient advocates in Connecticut’s forty-one (41) hospitals. The public is invited to participate in many of the workshops.

Several series workshops are co-sponsored by Connecticut Developmental Disabilities Network partners. The Network includes the Council on Developmental Disabilities, Office of Protection and Advocacy and the University Center for Excellence in Developmental Disabilities at the UCONN Health Center. Council on Developmental Disabilities members include representatives of the UCONN Center for Public Health and Health Policy and the Family Health Section of the Connecticut Department of Public Health.

Public policies that threaten the lives of people with disabilities is not new. Recent developments that suggest such policies are gaining widespread acceptance. “Altruistic filicide” describes situations where a parent kills his or her child with disabilities. Articles have been published encouraging the use of the “growth attenuation treatment” undergone by Ashley X of Seattle in early 2007. Switzerland has become the favorite destination for “suicide tourism”. Prominent ethicist Peter Singer, Princeton University, argues that parents should have a right to withhold food and hydration from newborn children who have disabilities. Pre-natal genetic testing leading to the widespread practice of selective abortion suggests “eugenics”. Adoption of the Gronigen Protocol in the Netherlands enables “death by committee”, where a team of doctors select babies and other people with severe disabilities for euthanasia. There is also official tolerance for the use of painful, potentially deadly, aversive electric shock programs on people with behavior-related disabilities.

The series will heighten understanding of the vulnerability of people with disabilities to life threatening public policy and invite participants to respond. This series is intended to help identify and promote values and ideas that are crucial to the overall well-being of people with disabilities, challenge values that pose a threat to the well-being of people with disabilities, and provide thoughtful examination of matters of value.

The series will begin in the Spring of 2008 with a symposium on citizen advocacy with Tom Kohler, Savannah, GA, at the Farmington Public Library. Mr. Kohler will be signing his book Waddie Welcome And The Beloved Community. A symposium on genetic screening, decisions regarding selective abortions, genetic traits and the insurance industry will be held in the State Capitol.

The symposiums will be followed by a series of seven (9) workshops addressing lessons from the German euthanasia program, social devaluation and the killing thought, “wounding” life experiences of human service recipients, fundamental issues of restraint, quality of life and medical deathmaking, and euthanasia and physician assisted suicide, protecting the lives of hospital patients, and organ donation The workshops will be presented by Jo Massarelli, Marc Tumeinski, Jo Osburn and Stephen Drake from the Social Role Valorization Implementation Project, Worcester, MA. Mr. Drake is a self-advocate. He has co-authored and authored numerous articles on disability and eugenics. He is a member of Not Dead Yet and has represented Not Dead Yet on 60 Minutes II, MSNBC, Democracy Now and News Hour with Jim Lehrer. This series will be held at the Institute of Technology and Business Development, Central Connecticut State University, New Britain.

The seven-part series will be followed by three (3) symposia and book signings at the Farmington Public Library. The symposia include Harriet McBryde Johnson, author of Too Late To Die Young: Nearly True Tales From a Life, Wesley Smith, author of Culture of Death: The Assault of Medical Ethics in America and a workshop on the Not Dead Yet movement.

The Connecticut Council on Developmental Disabilities is a federally funded, governor appointed Council comprised of people with developmental disabilities, family members, service providers and state agency representatives whose mission is to promote the full inclusion of all people with disabilities in community life. The Council is charged by federal statute to engage in advocacy, capacity building and systemic change activities on behalf of people with developmental disabilities, their families and their communities.

Posted by Ed Preneta at 2:09 PM | Comments (2)

Please tell us your personal stories on the use of physical restraints and seclusion on your student in special education so that we can strengthen state law next year. While it would be great if you could name your school and town, we understand that some of you may wish to remain anonymous.

New state law regulates the use of physical restraints and seclusion on students receiving special education in schools beginning October 1, 2007. The legislation requires schools to (1) notify parents of each incident, (2) keep records on each instance, (3) compile annual reports and (4) report serious injury to the State Board of Education. The State Board of Education must notify the Office of Protection and Advocacy and the Child Advocate about these reports. The Office of Protection and Advocacy and the Child Advocate are authorized to investigate incidents involving serious injury.

While this is better than it was, schools are not required to report all instances of the use of physical restraints and seclusion and the State Board of Edcuation is not required to review each school's annual report. Also, the State Board of Educaiton is not required to issue a yearly summary on the use of physical restraint and seclusion.

Since the use of physical restraint or seclusion on your special education student may not be reported to the State Board of Edcuation, and the State Board of Eduation may not review your school's report or report on the use of physical restraints and seclusion by schools, we thought our blog would be a good place to collect your stories so that we can use them in a report to strengthen the legislation in 2008.

Thank you in advance.

Posted by Angela Spino at 12:15 PM | Comments (12)