CTCDD: CTCDD Meeting 6-16-09

CTCDD Meeting 6-16-09


The 158th meeting of the CT Council on Developmental Disabilities was held on Tuesday, June 16, 2009, at the Institute of Technology and Business Development/Central Connecticut State University, New Britain.


Council Members Present:  Cathy Adamczyk, Chair; Patricia Anderson, Stephen Belske, Larry Carlson, Sheila Crocker, Kathryn duPree, Mary Eberle, Fred Frank, Gabriela Freyre-Calish, Robyn Hescock, Paul Kachevsky, David King, Bill Knight, Vice Chair; Jennifer Lortie, Tom McCann, Peter Morrissette, Frank Reed, Nancy Taylor, Anita Tremarche, and Patricia Tyler.


Excused Absence:  Joyce Baker, Patricia Carrin, Lisa Davis, John Flanders, Leo Germain, Hayley Kelley, and Armand Legault.


Guests Present:  Rosa Biaggi and Mike Fuller, Department of Public Health; and two (2) personal assistants, and Monica Richard, Manchester.


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


Ms. Adamczyk called the CT Council meeting to order at 10:40 a.m. 




          Mr. McCann moved to approve the minutes of May 12, 2009.  Mr. Belske seconded. 


          Mr. Blum requested that language be changed in the minutes from “concluding” to “summarizing” to reflect his role as the meeting facilitator rather than decision-making.


The minutes as amended were passed with Mr. Knight abstaining. 


Budget Update


2009 Budget


          Mr. Preneta distributed an updated 2009 budget report and projected 2010 budget.  He reported that memorandums of understanding (MOU) have been settled with CT Community Care, Inc., (CCCI) on demonstrating service brokers and peer mentors, and with the Disability Resource Network for the youth conference.  The first $5,000 payment has been made for the youth conference.  The first payment to CCCI will be made around July 1, 2009.  He said the MOU with DRN includes $10,000 from the Department of Public Health and $10,000 from the State Independent Living Council but those funds have not yet been transferred to the Council and do not yet show in the budget.  The MOU also assumes the CT Council will approve the use of the additional $10,000 set aside during the March 10, 2009 meeting.  Mr. Preneta noted that the University Center for Excellence has not yet returned $8,500 to the CT Council from our terminated collaboration on parent training.

          The CT Council has almost $37,000 of Undesignated funds for use with 2009 or 2010 initiatives but that amount could change with CT Council decisions regarding funds designated for a State Guide on Selected Services and Supports ($18,170) or Toolkits ($11,500), Family Lives or an Aging In Place initiative ($40,500), Medical Safeguards ($40,500), Mothers From Hell ($5,000), and Grassroots Intensive Training ($33,738). 

          Mr. Preneta noted that the CT Council spends about $35,000 for 6 Council meetings per year.  A typical CT Council meeting costs almost $5,200 per meeting.

          Mr. Preneta also reported that he is exploring using the “noninterference clause” in the federal Developmental Disabilities Act to request exemption of CT Council staff from mandatory state furloughs since reductions in CT Council expenditures have no impact on the state budget.  If staff required to take seven (7) mandatory furlough days over the 2009, 2010 and 2011 state fiscal years, the “savings” to the CT Council will be about $2,300 in 2009, $3,500 in 2010 and $2,300 in 2011.


          Ms. Taylor asked about exploring Toolkit reproduction costs with entities other than CT Public Broadcasting.


          Mr. Preneta said the cost of printing by other entities might be more costly since they will have set up charges.


          Ms. Langton said the Advocacy, Public Information and Education Committee will be deciding on Toolkit reproduction during a teleconference meeting on June 17, 2009.


2010 Budget


          The projected draft 2010 Budget is a little over $757,000.  Mr. Preneta reported that the 2010 Budget assumes:  the President and Congress will agree on level funding for Councils; level funding will not result in a reduction for the CT Council; unexpended 2009 funds will be carried over for use in 2010; most 2009 initiatives will be continued in 2010; and most continuing initiatives will be reduced by 10% from the previous year’s funding.  With these assumptions, the CT Council has about $45,000 for new initiatives.


Ms. Adamczyk thanked Mr. Preneta.


Old Business


Mothers From Hell 2 Connecticut (MFH2CT)


          Ms. Taylor volunteered to report on a June 3, 2009 luncheon meeting with Ms. Carrin, Mr. Kachevsky, Ms. Tremarche, Mr. Preneta and Ms. Spino.  Ms. Kelley was unable to attend the meeting.


          Ms. Taylor reported that the meeting was good reflection on the purpose of MFH2CT and the confusion on the part of CT Council members who voted for the initiative without enough detail.  The original intent came out of the CT Council’s work on getting legislation passed on reporting the use of aversives, restraint and seclusion (ARS) in schools.  Ms. Spino was trying to collect stories from parents whose children experienced the use of ARS, educate parents about the new law requiring reporting on the use of ARS and provide a forum for these parents to exchange experiences and information.  Entities such as TASH and APRAIS were explored to take the lead on creating MFH2CT.  These efforts were unsuccessful.  There is not a parent group specific to ARS.  There is a need for such a group.

          It was also made clear by the owners of the MFH2 trademark that no changes could be made to MFH2 logo or content.  Because the CT Council would have to give up editorial control, it was decided that the CT Council could not sponsor MFH2CT.  It was also acknowledged that some CT Council members had difficulty with the name and with the concept.  There was also concern that parents whose children experienced the use of ARS might be reluctant to go to a website sponsored by a state agency due to fear of retribution. 

          The task force agreed that something needed to be done for these parents and the number of parents who were prepared to join a MFH2CT and attend a conference and organizing meeting.  An alternative name is needed, the focus on ARS needs to be maintained and an entity is needed to manage such a group so that Ms. Spino is relieved of providing all the support to these parents.  CT Council funds could be used to support the start up of such a group.

          Mr. Kachevsky agreed that momentum with parents interested in this topic should not be lost and he hoped that parents could be sent from our website to resources listed on the MFH2CT website.  Ms. Lortie agreed.

          Ms. Eberle suggesting using listserves and using more positive websites as models for a future website on this topic.

          Ms. Tremarche said the CT Council should move quickly to respond to parents who were prepared to attend the conference and organizing meeting.

          Ms. Taylor proposed that the CT Council use a disclaimer on links that send people from the CT Council’s website to links to other websites.

          Mr. Kachevsky moved that the CT Council use funds ($5,000) to support a meeting on the start-up of an organization on ARS.  Ms. Eberle seconded.

          Ms. Hescock asked if anything was already published and distributed on ARS.

          Ms. Spino said the newly enacted state law on the use of ARS is not being consistently implemented by school districts.  Many parents still are not being told that there is such a law. 

          Ms. Eberle suggested that a booklet on this subject, similar to the CT Council’s “IEP Guide” and “Special Education Made Easy” could be developed and distributed.

          Ms. Tremarche suggested that it would be worthwhile to provide information that was provided by parents and based on their experiences.

          Ms. Tremarche moved to amend Mr. Kachevsky’s motion to allow the use of funds set aside for a State Guide on Selected Services and Supports be diverted to enable the publication and distribution of information on ARS.   Ms. Eberle seconded.  The motion passed unanimously.

          Ms. Adamczyk called the question on Mr. Kachevsky’s motion as amended.  The motion passed unanimously.


Parent Leadership and Advocacy Training


          Ms. Adamczyk said she understood that the site visit team has not been able to coordinate calendars to visit with the University Center for Excellence and the CT Down Syndrome Congress.  She wondered if this visit was still necessary to do.  She didn’t want to rehash past difficulty.  The topic may still be sensitive.


          Ms. Taylor thought holding the visit was still the right thing to do, but not to rehash past difficulty.  The visit was an opportunity to learn about the training that was provided and talk about the next possible collaboration or what different training the CT Council might do. 


          Mr. Reed asked if a new team might be better.


          Ms. Hescock asked if this meeting had to be now.


          Ms. Adamczyk asked if a report on the survey of training participants might be shared with the CT Council’s site visit team prior to a visit.


          Ms. Taylor said the original team was not a problem and just asking for survey information wasn’t enough.  Much more could be learned in a face-to-face meeting.


          Ms. Freyre-Calish said she would inquire about the completion and availability of a report on the survey of training participants.  She said that all a meeting may require is picking a date far enough in advance to coordinate calendars.


          It was agreed that a meeting will be scheduled with the original site visit team (Mr. Legault, Mr. Morissette, Ms. Tremarche and Ms. Taylor and staff) and the University Center for Excellence and CT Down Syndrome Congress.


Statewide Youth Conference


          In the absence of Ms. Carrin, Mr. Preneta reported that at its March 10, 2009 meeting, the CT Council approved awarding $5,000 to the Disability Resource Network (DRN) to assist youth to plan a statewide youth event and that the CT Council reserved an additional $10,000 for DRN contingent upon providing a detailed description of the activities, speakers and timeline.  He said that an agreement has been finalized with DRN and $5,000 of CT Council funds have been released.  Mr. Preneta said that $10,000 will also be transferred from the Department of Public Health and $10,000 from the State Independent Living Council to the CT Council for the conference but both agreements will come with lots of strings.  He said a detailed description of the activities, speakers and timeline has been shared with the CT Council and he requested a motion to approve releasing the CT Council’s additional $10,000.


          Ms. Eberle said the Bridgeport conference location was not central.


          Mr. Preneta said that Camp Harkness, Waterford, was the original location, but the cost of transportation was excessive.  The location for the conference was moved to the University of Bridgeport, which was donating space, in order to reduce costs.


          Mr. McCann asked if attending the conference was mandatory.


          Mr. Preneta said no one was required to attend the confercence.


          Mr. Knight moved to approve awarding an additional $10,000 to the Disability Resource Network for the youth conference.  Mr. McCann seconded.  The motion passed with Ms. Adamczyk, Mr. King and Ms. Lortie abstaining.


CT Medical Safeguards Initiative


          Mr. Kachevsky reported that he and Mr. Reed met on June 1, 2009, in Hartford, with a physician, physician assistants, nurses and a medical advocate from the Massachusetts Medical Safeguards program, and interested entities from Connecticut, including Ms. Beverly Jackson, self-advocate and former CT Council member; Mr. Stanley Kosloski, a self-advocate and coordinator of the Disability Advocacy Collaborative, a parent and coordinator of a local family support network, representatives of CT Legal Services, and an advocate in the field of mental health, to explore the start-up of a CT Medical Safeguards program.  The CT Council has $40,500 in its budget to start-up a CT Medical Safeguards program.  A medical safeguards program is a team of medical personnel and advocates who can be called upon when there is a question of safety, treatment or life and death decision-making regarding people with developmental disabilities who enter medical facilities.  He said there is interest in Connecticut for such a program and he encouraged the CT Council to support a program.


          Ms. Langton reported that Ms. Baker, Ms. Jackson, Mr. Legault and Mr. Morissette have formed a task force on creating presentations to do before medical professionals beginning in the fall of 2009.


          Mr. Reed joined the task force.


          Ms. Eberle noted that the CT Council’s proposed initiative on Schwartz rounds in hospitals fits with a medical safeguards initiative.


2010 Initiatives and State Plan Amendments


          Ms. Adamczyk asked state agency representatives on the Council to report on the impact of state budget recisions, early retirements and projected budget cuts.


          Ms. Anderson reported that the State Department of Education is primarily implementing federal mandates.


          Mr. Carlson reported that 273 of about 2,400 Department of Social Services employees are taking early retirement and that his department was also implementing federal mandates.


          Ms. Adamczyk invited Ms. Biaggi from the Department of Public Health to comment.  Ms. Biaggi said 65 people in her department were taking early retirement and people are already moving around into new positions.


          Ms. Freyre-Calish and Ms. Tyler had no information to share.


          Ms. Adamczyk asked for discussion of 2010 Initiatives.


          Ms. Taylor said she was not prepared to make competent decisions on initiatives without knowing more about each proposed initiative and that the CT Council needs a more efficient decision-making process.


          Ms. Tyler moved to postpone discussion of 2010 Initiatives until after the Council Governance and Management item on the agenda.  Mr. Knight seconded.


          Ms. Hescock said she needed more time


          Scott Blum, facilitator of the CT Council’s Retreat, proposed determining broader and larger areas for the purpose of the State Plan and to make specific decisions at a late date.


          Mr. Kachevsky feared assigning funds to broader and larger areas that might include specific items that he would not want to fund. 


          Mr. Reed wanted to add an initiative on aging in place in the community. 


          The motion passed unanimously.


Governance and Management


          Ms. Adamczyk asked Mr. McCann about CT Council member interviews.


          Mr. McCann said the Membership and Support Committee is meeting all day on July 28, 2009, in Harford.  Nine (9) interviews are already scheduled but more applications from people with developmental disabilities and parents are expected.  He asked that CT Council members who may be leaving the CT Council this fall in order to apply for the position of Director to contact him so that his committee knows how many new Council members to recruit and interview.


          Ms. Adamczyk also asked Ms. Hescock and Mr. King to join a committee.


          Ms. Adamczyk asked Ms. Hescock to report on a request for funds form.


          Ms. Hescock said Ms. Davis, Ms. Freyre-Calish and Ms. Tremarche prepared a request for funds form that was shared with CT Council members.


          Ms. Tyler said the form was an excellent beginning but the first issue is to revamp the CT Council decision-making process. 


          Mr. Reed said the more information about initiatives the better.


          Ms. Taylor said the CT Council had more process in the past with more information on fewer initiatives.  CT Council members need to be better prepared.  Decisions need to be in keeping with the CT Council’s mission. 


          Ms. Hescock said it seemed to make sense to decide which 2009 initiatives the CT Council expects to continue in 2010 in order know about how much money might be available for new initiatives.  On-going initiatives should be funded first.


          Ms. Tyler said the CT Council needs to apply the same decision-making process and criteria to continuing initiatives as new initiatives.  She said the CT Council was making decisions on emotions rather than a rational process.  For the purpose of the State Plan, it might be best to identify broad categories now and specific initiatives later.


          Mr. Kachevsky said the CT Council should define its goal and allocate funds that address the CT Council’s agenda.  He said teams of CT Council members may want to go out to investigate and research issues.


          Mr. McCann said it is important that the CT Council is assured that initiatives do what they said they were going to do before issuing more funds.


          Ms. Lortie said initiatives should be sent initiatives by e-mail attachment before hand.


          Mr. Blum noted that all CT Council members received the existing list of initiatives 2 weeks before hand and that brief statements about each initiative were provided as requested by the CT Council.


          Mr. Frank said the CT Council should not fund anything that other entities are already doing.


          Ms. Freyer-Calish moved to identify the following broad categories for the purpose of the State Plan:




          Housing and Independent Living

          Inclusive Communities


          Mr. Belske seconded.


          The motion passed unanimously.


          Ms. Adamczyk said members are needed for site visits.


          Ms. Crocker and Ms. Hescock volunteered for a site visit evaluation at 10:00 a.m., July 20, 2009, with People First of CT at a location to be determined probably in Hartford.

          Mr. Frank, Mr. Kachevsky, Mr. Knight and Mr. Reed volunteered for a site visit evaluation at 10:00 a.m., August 3, 2009, with the Disability Resource Network at a location to be determined probably in Bridgeport.


          Ms. Adamczyk asked if there was a report from the Transition Committee.


          Mr. Reed reported that there was nothing specific to report except that the Committee has been active.


          Mr. Knight moved that the CT Council enter into Executive Session.  Ms. Taylor seconded.  The motion passed unanimously.


          Members of the public and staff were excused from the room at 2:00 p.m.


                                                                   Respectfully submitted,




                                                                   Ed Preneta




Content Last Modified on 10/21/2009 12:22:42 PM