CTCDD: CTCDD Meeting 9-16-08

CTCDD Meeting 9-16-08

The 153rd meeting of the CT Council on Developmental Disabilities was held on Tuesday, September 16, 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; Patricia Carrin; Sheila Crocker; Lisa Davis; Kathryn duPree; Mary Eberle; Gabriela Freyre-Calish; Jamie Graham; Armand Legault, Vice Chair; Jennifer Lortie;  Chad Sinanian; Nancy Taylor; Anita Tremarche; and Patricia Tyler.


Absent:  Jousette Caro, John Flanders and Tom McCann.


Excused Absence:  William Broadbridge; Larry Carlson; Fred Frank; Leo Germain; and Peter Morrissette.


Guests Present:  Leslie Waite, Bureau of Rehabilitation Services; Mike Fuller, Department of Public Health; three (3) personal assistants and one (1) meeting assistant.


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


Walgreens Training Project


Ms. Adamczyk opened the meeting at 11:00 a.m. without a quorum for a presentation on Walgreens in Connecticut by Ms. Leslie Waite, Bureau of Rehabilitation Services.  Ms Waite used a video and PowerPoint presentation to present on employment opportunities for people with disabilities at the Walgreens warehouse in Windsor.  A paper copy of her PowerPoint was distributed with copies of a DVD that included several videos.  Council members were encouraged to sign up for direct e-mails from Ms. Waite.  Council members noted that the Walgreens opportunity was unique in that a business was trying very hard to employ people with disabilities.  Ms. Waite made it clear that Walgreens is a business not a charity.  The starting salary is $14.50, with good benefits, which is more money than would be obtained by remaining public income supports.  Employees must meet productivity expectations.  Council members noted that individuals would need various accommodations in order to meet productivity expectations.  Council members also noted that transportation was a significant issue for people with disabilities.  Ms. Waite acknowledged that Walgreens did not see transportation as its responsibility.  Council members noted that it would be difficult for people with disabilities who do not have their own transportation to work mandatory overtime or evening and late-night shifts.


Ms. Adamczyk thanked Ms. Waite for her presentation.


With a full quorum present, Ms. Adamczyk reported that Fred Frank asked to be excused from a few Council meetings in order to recover from a second heart attack.  She also expressed condolences to Ms. Taylor’s family following the death of her father-in-law.  In order to enable Ms. Taylor to be with her family, Ms. Adamczyk asked to move Ms. Taylor’s report on the Facility for Families with Children who are Chronically Ill and Technology Dependent and Election of Officers to precede approval of the Minutes of July 2, 2008.


Ms. Baker moved to amend the agenda as proposed by Ms. Adamczyk.  Ms. Graham seconded.  There was no discussion.  The motion passed unanimously.


Facility for Families with Children who are Chronically Ill and Technology Dependent


Ms. Taylor reported that she and Mr. Preneta attended meetings with several state agencies regarding the proposed facility.  The result of these meetings was that the State of Connecticut is revising the original request for proposal (RFP) so that it does not emphasize “facility or congregate housing” and allows for scattered site housing.  At the same time, the RFP will allow for a cluster of multi-family housing.  The Council will wait to see what the RFP actually says when it is released this Fall.


While the RFP is about “bricks and mortar,” more important is the arrangements for services and supports to children who are chronically ill and technology dependent.  Ms. Taylor reported that she and Ms. Spino joined a delegation of parents and a Pediatrician from southeastern Connecticut, and a representative from the Department of Children and Families, in a visit to Family Lives in Worcester, Massachusetts.  Family Lives has provided in-home nursing services to children who are chronically ill and technology dependent in most of Massachusetts for over 20 years.  Family Lives serves 104 families with 300 nurses on staff.  The frequently reported “nursing shortage” has not been a problem for Family Lives.  Family Lives turns away 40% of the nurses who apply to work for Family Lives.  They have less than 1% turnover and there is considerable longevity.  Family Lives was started with a $400,000 contract from the Shriver Center University Center for Excellence and other funds from the Massachusetts Department of Mental Retardation.  Family Lives is now supported through the Medicaid (Title XIX) program.  Family Lives has been “profitable” for some time but turns all such profit back into supporting nurses.  It has also used income to help indigent families with fuel assistance and other family supports.


Ms. Taylor noted that establishing a CT Family Lives has been proposed several times by the Council over the last decade without success but that there is no reason why such an entity cannot be established in Connecticut.  She said it would require about $400,000 in start-up funds plus the extreme dedication of one or two people, especially a parent of a child who is chronically ill and technology dependent, to make it work.  It would take 3 to 5 years for a CT Family Lives to be self-sustaining. 


Ms. Davis said the Council should support focus groups with nurses to uncover Connecticut barriers and a feasibility study to explore variations in Medicaid funding (between CT and MA) and relationships with existing visiting nurses associations (VNA).


Mr. Preneta said that the Council has a long-standing connection with the Connecticut Nurses Association (CNA) and that he has raised the possibility of such exploration with the CNA.


Ms. Eberle said the focus groups and feasibility study should result in a business model.


Ms. Davis said that she (through her department) has worked with SCORE (Senior Corps of Retired Executives) on costing out the effectiveness and return on investment of interventions Mr. Preneta said the Council has a connection with SCORE.


Ms. Taylor said that parents and the Pediatrician in southeastern Connecticut are very interested in exploring the establishment of a CT Family Lives and that the Council set aside funds for this purpose.


Ms. Tyler said that using Council funds to shepherd such ideas was much better than simply issuing a request for proposal.


Contacts will be made with interested parties in southeastern Connecticut, the Department of Public Health, SCORE, CNA, and others, to use Council funds on focus groups with nurses, a feasibility study and finding start-up funding.


Ms. Adamczyk thanked Ms. Taylor for her report.


Election of Officers


Ms. Tremarche led the election of Officers.  The ballot listed Ms. Adamczyk as running for Chair or Vice Chair and Mr. Legault as running for Chair or Vice Chair.  Ms. Tremarch asked for nominations from the floor.


Mr. Sinanian nominated Ms. Jamie Graham as Chair or Vice Chair.  Ms. Graham accepted the nomination for Vice Chair.


Ballots were distributed for election of Chair.  Ms. Adamczyk won re-election as Chair.


Ballots were distributed for election of Vice Chair.  The first vote was inclusive.  In the second vote, Mr. Legault won re-election as Vice Chair.




Ms. Adamczyk asked for a motion to approve the minutes of July 2, 2008.


Mr. Sinanian noted the meeting time was incorrect.


Mr. Legault  moved for acceptance of the minutes as corrected.  Ms. Lortie seconded.  The minutes passed unanimously.


2008 and 2009 Budget Update



Mr. Preneta reported that the Council was in better financial shape than Wall Street, the state budget and the federal budget.  He estimated that the Council would carryover about $23,000 of 2008 funds for use in 2009.  He noted that the Council’s 2008 budget is inflated because of conference income from past social role valorization (SRV) training, homeland security training and positive behavioral supports (PBS) conference registrations.  These funds, however, would be used first to pay PBS conference expenses.  At the same time, this income offset the use of Council funds, which can be used for other purposes in 2009.  He also noted that Council funds have not yet been used with the 2008 Disability Convention and Expo and Connecticut Public Television (CPTV), which could result in surplus funds.



          Mr. Preneta said the Council took a reasonable risk to project spending over $61,000 than budgeted in 2009.  He said this deficit is likely to be eliminated by an increase in federal funding when a federal budget is settled, funds carried over from 2008 into 2009, line items costing less than budgeted and planned initiatives that just don’t work out so funds aren’t used.  Initiatives could also be postponed to be funded with 2010 funds.


Ms. Adamczyk thanked Mr. Preneta for his report.


PBS Conference Planning


Ms. Spino reported that the PBS Conference registrations are at capacity with 350 registrations.  Many people have been turned away.  The majority of participants are agency representatives.  The conference budget was distributed with the financial report.


Disability Convention 2008


Ms. Langton reported that the 2008 Disability Convention and Expo is Saturday, September 27, 2008.  The Council will have a booth.


“Able Lives” 2008 Toolkit


Ms. Langton reported that the Toolkit Task Force will be meeting to complete the Education Toolkit and move on to other Toolkits [UPDATE:  42 boxes containing 2,500 “Able Lives” DVDs arrived at the Council Office.  Another 2,500 DVDs is expected plus 2,500 Toolkit folders and 2,500 inserts.  Storage, assembly and distribution of these materials is the Council’s responsibility and will require Council member participation.]


Aging-In-Place Symposium


Ms. Langton reported the Aging-In-Place Symposium is taking place on October 30, 2008.  A panel of people with disabilities includes Mr. Legault.  It is a working invitation only symposium to break down system barriers to in-home supports.  The symposium budget was distributed with the financial report.


Personal Assistance Task Force


Ms. Adamczyk read a report written by Ms. Baker.  Ms. Baker reported that a Council task force met to draft how the Council’s Back Up Personal Assistance initiative should be implemented.  Like the Council’s initiatives with CPTV, Trinity College, the PBS Conference, Aging-In-Place  symposium and CT Family Lives initiative, the Council will be deeply involved in implementation of this initiative rather than rely on an RFP.  Mr. Carlson is exploring a computer program to match qualified personal assistants with people who need personal assistants.


Wesley J. Smith re “Culture of Death”


Mr. Preneta reported that 55 people have registered for the presentation on September 19, 2008 by Wesley J. Smith on how the field of bioethics has turned against people with disabilities.  The presentation will trace how medical ethics has evolved away from questioning why should people with disabilities die, to how to enable them to die, to promotion of the right to die, and now the duty to die.  Mr. Smith will also present and sign books at the Farmington Public Library.


Advocacy, Public Information and Education Committee


Ms. Adamczyk said Ms. Taylor did not have a committee meeting schedule.  Ms. Langton said the focus is on getting the Toolkits completed and distributed.  The Committee has talked about doing more editorials and newspaper articles.


Mr. Sinanian said he would like the Council to write an article, editorial or letter about the movie “Tropic Thunder.”


Ms. Adamczyk said she would contact Ms. Taylor.


Legislation, Policy and Planning Committee


Ms. Spino reported that the Committee met in August to discuss the State Department of Education’s proposed regulations for implementation of the Individuals with Disabilities Act (IDEA).  Mr. Flanders led the writing of the Council’s comments.


Membership and Support Committee


Mr. Preneta reported that the Governor’s Office has begun making appointments, therefore, this meeting is likely the last meeting for Council members retiring from the Council.  He asked that retiring Council members attend the Council’s November 18, 2008 Council meeting so that they can be recognized.


Preliminary Discussion re Staff Transition in 2011


Mr. Preneta reported that it is common, public knowledge that he plans to retire from the Council on March 31, 2011.  He said that the effects of this event take place sooner than it seems and that there are many decision points the Council has to address that may be awkward and uncomfortable and could lead to conflict.  Potential conflicts may arise surrounding the question of who will be making what decisions, when and how those decisions are made.  To assist the Council with smooth executive succession, he distributed a proposed Transition Plan.  While he does not want to dwell on executive succession, the Council must plan ahead and incorporate executive succession in its State Plan.  He also said that there is no precedent for choosing his successor and that the Council will be breaking new ground.


Mr. Preneta outlined many periods of potential awkwardness, including awkward periods for himself, Council members and staff.  He noted that the state’s ethics laws require that any Council members interested in applying for his position must resign from the Council at least a year before his vacancy is advertised.  In addition, in fairness to the Council, these Council members will probably have to announce their intentions by June 2009 so that the Council’s Membership and Support Committee can recruit their successors.  He also said that Council members interested in his position cannot participate in any way with regard to the search for his successor.  The Search process probably should be delegated to a small committee of Council members who do not have a conflict-of-interest.  He recommended that the Search Committee be made up of only self-advocates and parents and that the Department of Developmental Services (DDS) be asked to provide technical assistance on state hiring policies, practice and procedures. 


Mr. Preneta said Council staff are already uncomfortable about his leaving.  He wanted to be sure that the Council understands that they have the power to hire, evaluate and fire the Director and that the Director has the power to hire, evaluate and fire Council staff.  It is inevitable, however, that the Council may wish to use this opportunity to reconsider Council Office staffing.  The Council has already raised the question of additional Council staff.  Mr. Preneta said that while he has been opposed to any additional staff, with a new Director, it is likely the Council will need an administrative fiscal person.  The Council may even consider sharing such a position with DDS.  Any discussion about change in staffing, however, should take place with the new Director.


Mr. Preneta recommended that the Council consider some third-party contracts over the next few years to help with Executive Succession and the future of the Council.  He said he is taking great pride in enabling a smooth transition and he is excited about who the Council will bring on board and the Council’s future.  He will be encouraging the Council to take more risks. He is looking forward to celebrating the Council’s 40th anniversary.


Finally, Mr. Preneta said there could be a “fly in the ointment” to his proposed succession plan.  If the State of Connecticut establishes an early retirement incentive plan, he will have no choice but to leave and it could be a lot sooner than planned.  It is, therefore, in the best interests of the Council to begin Executive Succession planning now.


With all this in mind, Mr. Preneta said that the first step in the succession plan is to re-visit his job description.  He said that the job description he inherited in 1978 was not changed until 1990.  He submitted a complete re-write of his job description but the state human resource system insisted on the inclusion of some elements that are not relevant.  It took 2 years for the changes to be implemented.  The current job description is completely out-of-date.  Mr. Preneta has already proposed a complete re-write of his job description with a rationale for changes.  He requested that life experience be given more weight so that more self-advocates and parents will be eligible.  He expects it will take 2 years for changes to be implemented and the Department of Administrative Services will dictate what it considers acceptable.


Ms. duPree said that Mr. Preneta’s proposed changes have been forwarded to her office.  She moved that the Council establish a Transition Committee to meet with DAS to review the job description for the Council’s Director position and to propose changes.  Ms. Eberle seconded.  The motion passed unanimously.


Mr. Legault said he would Chair the Committee.  Ms duPree volunteered to participate on the Committee.  Mr. Legault will invite Council members who do not have a conflict-of-interest to participate on the Committee.


Ms. Adamczyk thanked Mr. Preneta for his report.


Ms. Eberle moved to adjourn.  Ms. Crocker seconded.  The motion passed unanimously.


The meeting adjourned at 2:11 p.m.


The next Council meeting is Tuesday, November 18, 2008 from 11:00 a.m. to 2:00 p.m. at the Institute of Technology and Business Development/CCSU, New Britain.


                                                                   Respectfully submitted,




                                                                   Ed Preneta




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