CTCDD: Council Meeting 5-6-08

Council Meeting 5-6-08


The 151st meeting of the CT Council on Developmental Disabilities was held on Tuesday, May 6, 2008, at the Crowne Plaza, Cromwell.  This was also the Council’s Retreat.


Council Members Present:  Cathy Adamczyk, Chair; Joyce Baker; Larry Carlson; Patricia Carrin; Sheila Crocker; Mary Eberle; John Flanders; Gabriela Freyre-Calish; Jamie Graham; Jennifer Lortie;  Tom McCann; Peter Morrissette; Chad Sinanian; Nancy Taylor; Anita Tremarche and Patricia Tyler.


Absent:  William Broadbridge; Jousette Caro and Leo Germain;


Excused Absence:  Patricia Anderson; Carolyn Cartland; Lisa Davis; Kathryn duPree; Fred Frank; Armand Legault, Vice Chair; and Rajiv Root.


Guests Present:  John Esteves, Director, Disability Resource Network; Jim McGaughey, Director, Office of Protection and Advocacy;  Matt Smith, Webmaster; Craig Taylor, Former State Representative;  three (3) personal assistants and one (1) meeting assistant.


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


Ms. Adamczyk opened the Council meeting and Retreat at 10:10 a.m.  She welcomed guests and encouraged their participation in the meeting except for voting.  Ms. Adamczyk invited Mr. Esteves to present on Youth in ADAPT, an initiative supported by the CT Council.


Mr. Esteves thanked the Council for its support for enabling youth with disabilities to participate in ADAPT.  Four (4) youth from greater Bridgeport attended ADAPT’s 25th Anniversary in Washington, D.C., participated in a march, observed a demonstration and visited 17 offices of members of Congress, including U.S. Representative Christopher Shays.  He said the travel experience, meeting thousands of people with disabilities, participating in a national organization, advocating for a cause and meeting with members of Congress were first time, and meaningful, experiences.  The youth plan to follow-up with Rep. Shays in Connecticut.  ADAPT was also impressed with the participation by CT youth, who were the only participants to sport CT Youth ADAPT hats and t-shirts.  Mr. Esteves presented the Council with a DVD with a slide show of the event.


Ms. Adamczyk thanked Mr. Esteves.    




Ms. Adamczyk asked for a motion to approve the minutes of March 11, 2008.


Ms. Taylor moved for acceptance.  Mr. McCann seconded.

The minutes passed unanimously.


2008 and 2009 Budget Update



Mr. Preneta reported that the Council  currently has $33,664 in Undesignated funds that can be used for new initiatives and that there may be more by the end of the calendar year.  With few exceptions, fixed expenses are running at the expected rate but that he was keeping an eye on fringe benefit costs, which are averaging 60.75%.  He said this is why some Republicans in the General Assembly have encouraged an early retirement incentive program and partly why the Council can’t afford another staff person, even on a part-time basis.  Mr. Preneta noted that a new coding process will cause some line items to temporarily appear to have a surplus and others to temporarily appear to have a deficit as some expenses are combined under one code.  Out-Of-State and Fees and Permits (Registration) line items are enabling Council members and staff to attend a Wright’s Law conference in Maine, visits with our Congressional delegation in June and our national conference in Milwaukee in October.  It is expected, however, that as a budget tightening measure the Governor’s Office will restrict approval for Out-Of-State Travel.  The Governor’s Office has already issued an order to state agencies to reduce mileage allowances and gas consumption.  Council overall travel is greater than originally budgeted plus the mileage reimbursement rate increased on April 16th from $.485 per mile to $.505 per mile. 


Several Council members pointed-out that the Council has the authority to use its funds as it sees fit without interference.


Mr. Preneta said the Council should be careful about picking its battles.


Mr. Preneta said the Council may have a $1,000 surplus in the Graphic Design line item.  Membership Dues are dues to the national association and TASH.  Printing and Binding, Translation and Interpretation, and Office Equipment Maintenance and Repairs (copying) are higher than originally budgeted as a result of a great service the Council is providing that other state agencies say they can’t or won’t do.  The Council printed 1000 each of its Annual Report, IEP Guide and Special Education Made Easy, translated each into Spanish and printed 100 Spanish versions each.  The Council office is controlling distribution of these documents but Spanish versions are being given to Padres Abriendo Puertas for distribution.  Mr. Preneta reported that Ms. Langton calculated that she has copied over 48,000 pages of documents for 16 presentations on emergency preparedness.  This was another great service that was not originally anticipated in the budget.


Ms. Freyer-Calish suggested that CT’s Department of Emergency Management and Homeland Security (DEMHS) be approached for reimbursement regarding documents that have been copied. 


Ms. Langton and Mr. Preneta will make a request to DEMHS.


 Mr. Preneta reported that Under Long Distance Telecommunication Services, the Council office just switched form a cell phone to a Blackberry.  Publications and Music includes books that are part of the book signings related to the Council’s Life Threatening Public Policy series.  This will likely increase during the year.  Indirect Overhead is the 5% of the Council’s formula grant which goes directly to the CT General Fund.  The Council’s obligation to CPTV has been paid.  The Council still has $50,000 for the copying and distribution of Toolkits.  The Council does not yet have an agreement with the CT Family Support Council.  It appears that this initiative will be on a July 1 through June 30th fiscal year.  The Disability Advocacy Collaborative carried over $2,994 of 2007 funds for use in 2008.  There may be a surplus at the end of the calendar year.  Grass Roots Parent Organizing is an in-house project that includes a Positive Behavioral Interventions and Supports conference scheduled for September 23, 2008, the IEP Guide and Special Education Made Easy and Mothers From Hell.  As bills are incurred, expenses and funds will be moved to various budget line items for payment. 


Ms. Spino reported that plans are well underway for the PBIS Conference with several nationally known speakers already committed.  She also suggested the Positive Behavioral Interventions and Supports conference could be a CT DD Network event in cooperation with the State Department of Education.


Ms. Tyler pointed out that adults with disabilities are as much subject to aversives, restraint and seclusion, in all kinds of settings, including within their own homes and families, and that positive intervention techniques are no different with adults than children.


Ms. Freyer-Calish that adults are at risk even in recreation programs.  She encouraged the development of a network of advocates – a new generation of parents and self-advocacy leaders.  Ms. Freyer-Calish suggested a shorter training for parents than Partners In Policymaking since time is an issue for families and many can't commit for every weekend for 10 months.  Parents should also be reimbursed for expenses and receive a stipend, like Council members.  Parents should be recruited from all parent and disability organizations.  Leadership training is a priority for the UCEDD and the UCEDD is looking for partners to work



Ms. Tyler moved that the focus of the PBIS conference be expanded to include people with disabilities across the lifespan.  Mr. Flanders seconded.


Ms. Taylor said she agrees that adults are also at risk.  She expressed concern that it may be difficult logistically to reach adults and service providing agencies and it would dilute available resources.  She suggested a separate conference should be held with adults and adult service providers.


Mr. Flanders said expansion that creates an issue with too many possible participants may be a good thing.


The motion passed with Ms. Taylor voting No and Ms. Lortie Abstaining.


There was considerable discussion regarding the “services” Council staff are providing regarding homeland security and the special education system, even though the Council is not a service providing agency. 


Mr. Preneta clarified that he allows staff limited, temporary “service” experience as a way to learn how systems really work or do not work and to recruit families for a Mothers From Hell organization. A great deal has been learned about first responders and about family encounters with the special education system.


Discussion continued as to the appropriateness and effectiveness of the “service” experience of staff with respect to individuals and families versus the impact advocacy, capacity building and systems change can have on improving systems for all.


Ms. Eberle moved to table further discussion on how to best use Council resources.  Mr. Flanders seconded.  The motion passed unanimously.


Mr. Preneta reported that Trinity College Robotics is completed and that he is awaiting a final expenditure report for payment.  Trinity College and Mr. Preneta were interviewed by Odyssey magazine regarding “helping robots” and  Scientific American published a special edition mostly about “helping robots.”  Kids As Self Advocates carried over $3,460 of 2007 funds for use in 2008.  There may be a surplus at the end of the calendar year.  Finally, Mr. Preneta reported that Ms. Spino has applied for a weeklong national leadership institute in developmental disabilities, designed for new working professionals, at the University of Delaware.  If accepted, the estimated $3,000 cost in tuition, travel, meals and lodging will be absorbed in the budget.



Mr. Preneta reported that the President has proposed level funding for Councils in 2009 so the Council’s formula grant should remain at $695,612.  At the same time, Councils will be requesting an increase from Congress.  It is anticipated, however, that due to the Iraq war and the recession, Councils may experience a reduction in funding.  The Council’s 2009 Budget, Initiatives and State Plan Amendments should be based on level funding.  More information about the 2009 federal budget may be available by the Council’s June 17th meeting.


“Able Lives” 2008 Education Toolkit Update


          Ms. Taylor reported that Connecticut Public Television (CPTV) just provided an update late on the afternoon of May 5, 2008.  The “Able Lives” 2008 Task Force will be reviewing graphic designs for the Education Toolkit, inserts and a PowerPoint presentation based on the Council’s “Special Education Made Easy” document.  The Task Force will meet with CPTV on June 5, 2008.  The Task Force is also awaiting a two (2) DVD set of the original “Able Lives.”  CPTV estimates that 2500 copies of the Toolkit and DVD, and 5000 copies of the original “Able Lives” DVD, will cost $29,000.  CPTV proposes using funds for a Local Lens production, a new, half-hour show that airs on Saturday and Sunday, focusing on Connecticut’s people with disabilities who are aging and older caregivers who are aging in place.  It is unclear, however, if CPTV already has funds within its existing budget for the Local Lens production.  Mr. Preneta will review expenditures with CPTV. 


People with Disabilities who are Aging and Aging Caregivers Aging-In-Place


          Mr. Preneta said the CT DD Network have been meeting to plan an invitation only symposium for 75 people on aging-in-place to emphasize support for continuity of relationships and autonomy, community membership, valued roles and choice.  The symposium is being planned for October 15, 2008.  Symposium participants will be a mix of self-advocates and caregivers, particularly those who are 55 years of age and older, with providers and policymakers.  The intent is to influence future policy, practice and budget options by the opening of the 2009 session of the Connecticut General Assembly.  The symposium will include a progressive keynote speaker, breakout sessions with facilitators and a video recording of the plenary sessions.  A CPTV “Local Lens” production will also be explored.  The CT DD Network requests using up to $30,000 for the symposium.


          Mr.  Sinanian said that he is aware that caregivers are concerned about the future for their sons and daughters.  The Council should be advocating for more community support.  He was particularly concerned that the Department of Developmental Services continues to pour money into state institutions.  He said the majority of people do not want institutions and skilled nursing facilities (SNF).


          Mr.  Morrissette said his parents put him into a SNF because they believed he would be safe.


          Ms. Eberle said the conference sounded like the Council’s Interrobursts (which means exploring the unknown with enthusiasm).


          Ms. Taylor recommended the symposium include focus groups and other mechanisms to capture the wishes of people who are older and older caregivers.


          Mr. McGaughey said the symposium is very much like an Interroburst and will include holding focus groups.


          Ms. Taylor moved to allow up to $30,000 be used for a symposium on aging in place, focus groups, surveys and a Local Lens production.  Ms. Eberle seconded.  The motion passed unanimously.




          Ms. Adamczyk reminded Council members that draft revised bylaws have been circulating since February 2008.  It is time to make a decision.


          Ms. Taylor moved to adopt revised Bylaws.  Ms. Graham seconded.  The motion passed unanimously.


2009 Initiatives and State Plan Amendments


          Ms. Adamczyk reported that since the distribution of draft 2009 initiative proposals, several have evolved and would be better addressed at the Council’s June 17, 2008 Council meeting.  She noted that the following initiatives have been supported by the Council for 4 to 6 years and are not planned for continuation in 2009:

          CPTV – “Able Lives”

          Disability Advocacy Collaborative

          Kids As Self Advocates

          She noted the following initiatives may be supported for a 2nd, 3rd or 4th year in 2009:

          Connecticut Family Support Council

          Trinity College Robotics

          Grassroots Leaders, including Mothers From Hell

          Youth in ADAPT with the Disability Resource Network

          Social Role Valorization Training

          Ms. Adamczyk noted that new 2009 initiatives being explored include the following:

          Transportation – An initiative to change ConnDOT’s culture, which may include the use of ConnDOT’s van distribution program in cooperative transportation models, wheelchair accessible independent transportation networks and government-wide coordination.

          Employment – Following Connect-Ability’s lead, unless there is a specific initiative the Council should undertake.

          Housing – Building a coalition to explore implementation of the Georgia Council’s Easy Living Home, which has also been adopted by the Tennessee Council.

          Personal Assistants – Exploring implementation of California’s “Easy Does It” emergency backup system if leveraging Rewarding Work is not an option.

          State Guide to Selected Services and Supports – Focusing on a few key state programs and describing “How It Really Works,” similar to the IEP Guide and Special Education Made Easy documents.

          Ms. Adamczyk added that the Council’s State Plan should also be amended to include $10,000 in 2010 to support a conference with the Department of Developmental Services.




          During lunch, Mr. Preneta reminded Council members that the Membership and Support Committee will be meeting on June 24, 2008 to interview prospective new members.  In addition to requesting the reappointment of 7 current Council members, the Council is recruiting 3 parents and 4 self-advocates.


          Mr. Preneta also asked Council members to sign up for Site Visit Evaluations:

          Tuesday, May 13, 2008   10:00 a.m.,   Trinity College, Hartford

Tuesday, July 1, 2008      10:00 a.m.,   CPTV, Hartford

Wednesday, July 2, 2008 10:00 a.m., SRV, Place to be determined

Monday, July 7, 2008      10:00 a.m., Family Support Council, Place to be determined (may be moved to early September)

Tuesday, July 8, 2008      10:00 a.m., KASA, Place to be determined

Wednesday, July 9, 2008 10:00 a.m., Disability Resource Network, Ansonia

Thursday, July10, 2008    10:00 a.m., Disability Advocacy Collaborative


The Legislative Process


          Ms. Eberle, Mr. Taylor and Mr. Flanders led the Council in a discussion of the Legislative Process, how to contact state and federal legislators, various techniques for making an idea into legislation, and how a bill really becomes law.  Ms. Eberle’s PowerPoint presentation is available from the Council Office upon request.


          Ms. Adamczyk thanked Ms. Eberle, Mr. Taylor and Mr. Flanders for their time and expertise.


          Mr. Flanders moved to adjourn.  Mr. McCann seconded.  The motion passed unanimously.


The meeting adjourned at 3:00 p.m.


                                                                   Respectfully submitted,




                                                                   Ed Preneta

Content Last Modified on 7/10/2008 2:56:14 PM