CTCDD: Council Meeting 1-08-2008

Council Meeting 1-08-2008


The 149th meeting of the CT Council on Developmental Disabilities was held on Tuesday, January 8, 2008, at the Institute of Technology and Business Development, Central Connecticut State University, New Britain.


Council Members Present:  Cathy Adamczyk, Chair; Patricia Anderson; Joyce Baker; Larry Carlson; Lisa Davis; Kathryn duPree; Mary Eberle; John Flanders; Fred Frank; Gabriela Freyre-Calish; Leo Germain; Armand Legault, Vice Chair; Jennifer Lortie; Tom McCann; Rajiv Root; Paul Seigel; Chad Sinanian; and Nancy Taylor.


Absent:  Jousette Caro and Patricia Carrin.


Excused Absence:  William Broadbridge; Carolyn Cartland; Sheila Crocker; Jamie Graham; Peter Morrissette; Anita Tremarche and Patricia Tyler.


Guests Present:  Five (5) personal assistants, 2 American Sign Language Interpreters and one (1) meeting assistant.


Jennifer Carroll, CT Family Support Network Coordinator.

Stan Kosloski, Disability Advocacy Collaborative.

Michael Selvaggi, Special Education Parent Network, Milford.

Karen Zrenda, Chair, CT Family Support Council.


Staff Present:  Mary-Ann Langton, Ed Preneta and Angela Spino.


Ms. Adamczyk opened the Council meeting at 10:35 a.m.  She noted that this meeting was the last meeting for Paul Seigel, who is retiring from the Council, and that Patty Vidal had taken a new job and resigned from the Council.




Ms. Adamczyk asked for a motion to approve the minutes of December 11, 2007.


Ms. Eberle moved for acceptance.  Mr. Germain seconded.   The minutes passed with Mr. McCann and Mr. Sinanian abstaining.


Public Comment


Ms. Adamczyk invited comments from the public.


1.  Michael Selvaggi, Special Education Parent Network, Milford.


Mr. Selvaggi expressed anger and frustration with the State Department of Education for failure to ensure that all children receive an education by its lack of enforcement of compliance with antidiscrimination and civil rights laws.  He expressed frustration with both the due process and complaint process systems.  Mr. Selvaggi said various agencies established to provide advocacy and enforcement assistance offer little more than empty promises and hamstring staff.  He suggested the following:

          Meaningfully inform parents about their rights and procedural protections.

          Demand honesty from education administrators.

          Put in place an accessible and meaningful complaint process.

          File criminal charges on behalf of individuals.

          Do not allow the Office of Protection and Advocacy to be indifferent to pleas for help.

          Uncover the truth about the number of complaints filed with the State Department of Education on the use of restraints.

          Compel full compliance with IDEA.

          Hold corrupt education officials accountable.

          Hire an attorney or staff of attorneys.

          Demand the Attorney General and State Attorney’s Office use enforcement and investigatory powers.

          End the unfair due process hearing process system and partial hearing officers.

          File reports on neglect, indifference and criminal activity on the part of state and local public school officials.

          Establish a defense fund for low-level school system employees who try to help.

          File federal complaints.

          Demand the withholding and return of funds by school districts that discriminate.

          Seek legislation for criminal and civil remedy for violations of laws and rights.

          Demand that all groups receiving public funds assist and protect children.

          Mr. Selvaggi noted that schools did not even tell parents about abuse until the CT Council took action on the reporting on the use of restraints.

          He also noted that there was no accessible path of travel from the street to Milford Mall. 


Ms. Adamczyk, Ms. Anderson, Ms. Baker, Mr. McCann, Mr. Root, Mr. Sinanian, Mr. Seigel and Ms. Taylor all engaged Mr. Selvaggi in discussion and questions that affirmed some of his comments and suggestions and clarified and corrected others. 


2.  Stan Kosloski, Disability Advocacy Collaborative.


Mr. Kosloski thanked the Council for its support for the Disability Advocacy Collaborative over the last 3 years.  He said the Collaborative was incorporating and seeking not-for-profit status with the Internal Revenue Service.  Mr. Kosloski said the Collaborative will continue to meet monthly, the Web based calendar and newsletter will continue and the 6 regional collaboratives will continue to be active.  He recommended the Council do the following:

          Support leadership development of both self-advocates and parents.

          Support values based training (i.e. social role valorization) workshops to provide the underpinnings for policy and practice.

          Support Connecticut’s second Disability Convention and Expo to be held in Hartford on September 20, 2008.


Ms. Adamczyk, Mr. Legault, Mr. McCann and Mr. Sinanian engaged Mr. Kosloski in discussion and questions and learned that the cost of holding the Expo was about $12,000.  Mr. Kosloski requested $5,000 from the CT Council.


3.  Jennifer Carroll, CT Family Support Network Coordinator and Karen Zrenda, Chair, CT Family Support Council.


Ms. Carroll and Ms. Zrenda thanked the CT Council for its past support for the CT Family Support Council.  Ms. Carroll noted that she was a paid staff person for the CT Family Support Network, which is part of the CT Family Support Council, but with a separate agenda and separate funding.  Ms. Zrenda said the CT Family Support Council does not have staff.  The Family Support Council has not been successful in capturing state funds during the legislative and appropriations process.  She noted that she, and other parents volunteering on the Family Support Council, have been spending an extraordinary amount of time representing the interest of families at various meetings and events.  The demand for such representation is outstripping the ability of parent-volunteers to meet the demand.  Ms. Zrenda asked the CT Council for funding for a paid position for the Family Support Council to hire a parent to maintain the Family Support Council’s presence, organize events and activities and to explore more permanent resources. 


The CT Council Office estimated that the cost of a staff person ranged from $33,315 for a part-time person to $66,854 for a full time person and did not include the cost of computer, furniture, supplies, office space and other administrative supports.


Ms. Adamczyk thanked the public for their comments and said that all comments would be addressed by the end of the day under the agenda item regarding the CT Council’s new initiatives for 2008.  She invited the public to join the Council for lunch.


Decision Regarding Council Structural Changes


Ms. Adamczyk asked Ms. Eberle to continue to lead the Council in decision-making regarding Council structural changes discussed over the last 2 Council meetings.


Ms. Eberle noted the Council had already decided to eliminate the Grants Committee but that the Council-as-a-whole would continue to do site visit evaluations of Council initiatives.  She said the Executive Committee would be continued with membership made up of the Council’s Chair and Vice Chair and Chairs of whatever standing committees are created.  She said the Membership Committee will continue with added responsibility for addressing support that enables meaningful Council member participation.  Ms. Eberle said a decision had to be made regarding the Advocacy and Legislation, Planning and Public Information and Education Committees.


Ms. Adamczyk expressed concern with a cumbersome and time consuming process for responding to short notice on hearings on bills and short time frames for commenting on current events.


Ms. Taylor said the Council needs to get past that process question with “rapid response” subcommittees with specific, time-limited assignments for members that enable them to use their strengths and interests.


Mr. Flanders said that “rapid deployment forces” can move independently based on a known mission.  The Council’s current committee structure may be fine with better identification of roles and responsibilities for implementation of action.


Ms. Taylor said more cohesion is needed regarding legislation and the broader area of policy.  She said legislation is just the implementation of policy.


Ms. Eberle suggested reorganizing Advocacy and Legislation, Planning and Public Information and Education into 2 committees:  an Advocacy, Public Information and Education Committee to address the general public and a Legislation, Policy and Planning Committee to address the legislative and executive branches of government.


Mr. Germain favored streamlining the committees.


Mr. Carlson said combining the committees does not eliminate functions carried out by the current committees, instead, combining eliminates “silos” and enables better communication.


Mr. Flanders said that, regardless of the committee structure, the committees will need training 2 training sessions on their duties, obligations and responsibilities.


Ms. Lortie proposed that a task of the new committees is to define how they will carry out their roles.


Mr. Legault moved that the Council maintain its current committee structure, except for the elimination of the Grants Committee, but implement training on duties, obligations and responsibilities.  Ms. Lortie seconded.


Ms. Taylor said the Council needs to move toward streamlining its committees.


Mr. Legault said combining committees will require more significant training.


Mr. Germain said a larger committee will need a subcommittee structure.


Mr. Legault voted in favor of the motion.  All other Council members opposed.  The motion failed.


Mr. Flanders moved that the Council create an Advocacy, Public Information and Education Committee to address the general public and a Legislation, Policy and Planning Committee to address the legislative and executive branches of government, and that the Executive Committee be changed to include the Council’s Chair and Vice Chair and 2 members from each of the Council’s standing committees.  Mr. Germain seconded.  The motion passed unanimously.


Ms. Eberle said Council staffing will be discussed later on the agenda with new 2008 initiatives.


Ms. Adamczyk thanked Ms. Eberle for facilitating Council reorganization.


2008 Budget Update


Mr. Preneta reported that $17,350 remained in the CT Council’s 2007 Budget for final payments to 2007 initiatives :  payments to Kids As Self Advocates and the UCONN Center for Survey Research and Analysis were being held until proper invoices were provided and payment to the Disability Advocacy Collaborative was being held until satisfaction surveys were provided.  The CT Council also used $45,000 of 2008 funds for the 2007 “Able Lives – Inclusion Works” initiative with Connecticut Public Television (CPTV).  Of that amount, $20,000 remained to be paid.  The CT Council carried over $7,667 of 2007 funds for use in 2008.


The CT Council’s 2008 Budget included $7,667 of 2007 funds and $443 from past conference income.  The President and Congress agreed on a federal budget that resulted in the same amount of funding for Councils in 2008 as they received in 2007.  This usually results in a loss of funding for the CT Council due to the elements in the federal formula.  Mr. Preneta estimated the CT Council’s 2008 allotment to be $675,198, therefore, the CT Council’s total 2008 Budget was expected to be $683,308.  The CT Council’s 2008 Budget already included the following:


$2,200         IEP Cliff Notes

$8,500         Interactive robotics with Trinity College

$10,000       Youth Activists

$32,400       Kids As Self Advocates

$36,725       Life Threatening Public Policy series of 15 workshops targeting

hospital ethics committees and patient advocates.


In addition, the CT Council identified, but did not commit, up to $130,500 in additional 2008 funds to use with “Able Lives” in 2008.  Mr. Preneta said the CT Council needs to first decide on what to do about “Able Lives 2008” in order to have funds for any additional new initiatives in 2008 as outlined in its State Plan.


Ms. Adamczyk thanked Mr. Preneta.


Determining New Council Initiatives for 2008


Ms. Adamczyk asked for discussion on “Able Lives 2008.” 


Mr. Sinanian said the CT Council should not continue to make “Able Lives” videos.  Mr. McCann agreed.  He wondered if the CT Council was getting anything out of the short videos and advertising on public radio.


Ms. Dupree said she was not aware of a specific proposal on how $130,500 would be used for “Able Lives 2008”.


Ms. Anderson said “Able Lives” was a breakthrough initiative that has not been used to the extent that it could have been used:  the Website has never been kept up to date and copies of the DVDs were never fully distributed.  With the state’s Medicaid Infrastructure Grant: “Connect-Ability” producing videos under “Able Lives, Incorporated,” “Able Lives” will be getting more visibility.  The CT Council should take advantage of this opportunity.


Ms. Eberle agreed that it was a question of what the CT Council should do with “Able Lives.”


Ms. Taylor recalled that the original “Able Lives” proposal included funds for making copies of DVDs for use as Toolkits with different audiences locally, statewide and nationally.  She said the CT Council’s remaining funds with CPTV could be used for this purpose.


The original 2007 “Able Lives” proposal included $15,000 in-kind by CPTV for the design of 3 Toolkits over 2 years and the original proposed 2007 budget included $1,500 for DVD copies.  The final 2007 agreement was less specific with regard to budget line items but the 2007 agreement included working with the CT Council to create a hard copy outreach Toolkit that included a folder, DVD and promotional material.  At the end of 2007, CPTV submitted a revision to use remaining funds to create a “how to” Toolkit for policymakers, parents, educators, business decision-makers and community leaders.  The Toolkit would be based on the original 10 half-hour episodes and included creation of a master 2 DVD set featuring all 10 episodes.  While “Able Lives” is a trademark of the CT Council, CPTV owns the copyright to the videos. 


Ms. Taylor also suggested the CT Council could explore paying for making multiple copies of the 10 part series, purchasing the rights to “Able Lives” and purchasing video that was not used in the production but that was in storage.


Ms. Eberle moved that the CT Council use the remaining $20,000 with CPTV, and additional $50,000, to work with CPTV on buying copies of DVDs for Toolkits for distribution and training.  Mr. Legault seconded.


Mr. Germain said he would be interested in managing the now dormant “Able Lives” blog.


Ms. Taylor said the “Able Lives” blog was expensive and currently on a CPTV server.  It might be possible to move the blog to the Council’s blog server.


Ms. Langton noted the blog includes streaming video.  CPTV may not be willing to transfer video or the blog to the CT Council’s blog.


Ms. Eberle said the motion did not exclude using the blog and that it would be part of the negotiation with CPTV.


Ms duPree said she supported distribution of the “Able Lives” videos but video cut from production and in storage may not add much value.  Also, the Department of Developmental Services was using the on-line College of Direct Support for some training.


The motion passed unanimously.


Ms. Adamczyk asked for discussion on proposed new 2008 initiatives:


$5,000         2008 Disability Advocacy Collaborative Convention and Expo  

$45,000       Grassroots parent organizing to include informing and educating families on rights, services and supports and positive behavioral intervention/supports; if necessary, a study on the use of restraints; start-up of a Mothers (or Parents) From Hell organization; gathering information from parents fed up with the lack of enforcement of IDEA and failure of the due process and complaint procedure; and strengthening restraints legislation.

$67,000       Start-up funding for the CT Family Support Council to hire staff and explore future state funding.

$70,804       Full-time CT Council Secretarial staff, computer, furniture and office supplies.


Ms. duPree moved that the CT Council award $5,000 for the 2008 Convention and Expo,  $33,315 for a part-time staff person for the CT Family Support Council and $42,185 for grassroots parent organizing.  Mr. Flanders seconded.


Ms. Freyer-Calish asked that translation into Spanish of the IEP Cliff Notes be made part of the grassroots parent organizing.


Ms. Baker asked that the Life Threatening Public Policy series also 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.


Ms. Davis said the Department of Public Health would be interested in working with the CT Council to address this issue.


Ms. Langton said an initiative is needed to address 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.


Ms. duPree said the CT Council can work with the Department of Developmental Services and Department of Social Services to address this issue through the state’s “Money Follows The Person” initiative.


Mr. Germain said additional CT Council staff might enable the Council to do more and be more efficient.


Ms. Taylor asked about the implications of adding staff and narrowing responsibilities.


Mr. Preneta said he was not in support of adding staff.  Adding staff would be relatively invisible to the CT Council since duties, obligations and responsibilities of that staff would largely focus on office support, procedures and systems, some writing and editing and maybe even some financial duties.  Adding staff would take a sizeable amount of funds away from initiatives annually without substantially freeing existing staff for additional activities.


Narrowing staff responsibilities would require withdrawing CT Council presence and participation from various boards, commissions and councils.


Mr. Sinanian said he was opposed to adding staff.


Ms. Taylor said that, while she supported the family support movement, she was reluctant to approve CT Council funds for hiring CT Family Support Council staff when the CT Council can’t hire staff, the CT Council would have no control over that staff and there is no assurance about future funding from other sources.


Ms. Adamczyk said the CT Council commits funds only on an annual basis.


The motion passed with Ms. Davis, Mr. Frank and Ms Taylor opposed.


[NOTE:  In addition to the above, the CT Council’s State Plan projected a transportation initiative linked to employment and distributing information about employment related incentives and benefits, however, the state’s Medicaid Infrastructure Grant:  ConnectAbility, is addressing employment and the CT Council participates in this initiative.  The State Plan also projects increasing housing opportunities, becoming active in housing coalitions and working with architects, developers and landlords on incorporating universal design.  CT Council staff will explore such opportunities for a future CT Council initiative.]


Ms. Taylor moved to adjourn.  Mr. Seigel seconded.  There was no discussion.  The motion passed unanimously.


The meeting adjourned at 2:20 p.m.


                                                                             Respectfully submitted,




                                                                             Ed Preneta















Content Last Modified on 3/26/2008 10:34:30 AM