CTCDD: Council Meeting 3-11-08

Council Meeting 3-11-08

 

The 150th meeting of the CT Council on Developmental Disabilities was held on Tuesday, March 11, 2008, at the Institute of Technology and Business Development, Central Connecticut State University, New Britain.

 

Council Members Present:  Cathy Adamczyk, Chair; Joyce Baker; William Broadbridge; Larry Carlson; Patricia Carrin; Sheila Crocker; Lisa Davis; Kathryn duPree; Mary Eberle; John Flanders; Fred Frank; Gabriela Freyre-Calish; Leo Germain; Jamie Graham; Armand Legault, Vice Chair; Jennifer Lortie;  Tom McCann; Chad Sinanian; Nancy Taylor; Chad Sinanian; Anita Tremarche and Patricia Tyler.

 

Absent: Peter Morrissette

 

Excused Absence:  Patricia Anderson; Jousette Caro; Carolyn Cartland and Rajiv Root.

 

Guests Present:  Mark Fuller, Consumer Representative, Children and Youth with Special Health Care Needs, Department of Public Health; three (3) personal assistants and one (1) meeting assistant.

 

Staff Present:  None

 

Ms. Adamczyk opened the Council meeting at 11:00 a.m.

 

Minutes

 

Ms. Adamczyk asked for a motion to approve the minutes of January 8, 2008.

 

Mr. Flanders moved for acceptance.  Ms. Lortie seconded.

The minutes passed unanimously.

 

2008 Budget Update

 

Ms. Adamczyk reported that there is an update to the budget report.  The report sent in the mail showed a minor deficit in the Conference Seminar and Workshop Hosting line item but that was due to the miscoding of a bill.  The update corrects that error and updates expenses.

$9,250 remains in our 2007 Budget to pay the UCONN Center Survey for Research and Analysis, which still hasn’t been able to generate a CORE-CT invoice so that we can pay the bill.  [This invoice has been paid.] 

          Our 2008 Budget is $707,322 and includes $11,267 of unspent 2007 funds, $443 from past conference income and $695,612 in 2008 federal formula grant funds, which is about $20,000 more than our 2007 federal formula grant.  We are still awaiting signed Memorandum of Agreements with CPTV, KASA [We have an MOU with KASA.] and the CT Family Support Council so no funds have yet been spent with these entities.  KASA also owes us a 2007 final expenditure report [Received.] so our agreement with KASA could be reduced by unexpended funds [$3,460].  The Disability Advocacy Collaborative also owes us a 2007 final expenditure report.  Our agreement with them could also be reduced by unexpended funds.  Finally, we are in a dispute with the Attorney General’s Office regarding our contract for Council member transportation with Coordinated Transportation Solutions.  The AG’s Office wants more detail than we or CTS can provide.  We are not alone in this dispute.  There is a systemic problem with the AG’s Office.  The AG’s Office rejected several Department of Developmental Services contracts too.  DDS’s legal office is meeting [March 24th] with the AG’s Office to discuss our contract as well as the Department’s contracts.  In the meantime, we owe CTS over $2,000, not including transportation for today’s meeting.

          The bottom line is that the Council has $33,664 in undesignated funds that can be used for new initiatives.

 

Legislation, Policy and Planning Committee

 

Mr. Flanders reported that Ms. Spino testified in support of HB 5132 to Appropriate Funds To The Family Support Council and HB 5498 to support A Catastrophic Illness In Children Relief Program.  Ms. Langton testified on SB 414 in support of The State-Funded Home Care Program For The Disabled And Personal Care Assistance Program For The Disabled and submitted testimony in support of SB 644 for Independent Transportation Networks.

 

Mr. Flanders sent a letter to the Public Health Committee pointing out technical errors and issues in HB 5424 Authorizing Bonds Of The State For A Facility In Manchester For Persons With Developmental Disabilities.  He testified on HB 5590 expressing reservations with Special Education And Instructional Methods Concerning Autism And Other Developmental Disabilities.  The Education Committee asked the Council for revised language.  Mr. Flanders submitted new language.  [We have not yet seen this language.  A copy has been requested.]  He also testified on SB 276 in support of Expanding Insurance Coverage For Hearing Aids For Children.

 

Ms. Taylor inquired about HB 5696 Requiring Insurance Coverage For Autism Spectrum Disorder Therapies, which was also about insurance.  There was considerable e-mail discussion about this bill among Council members.

 

Mr. Flanders said the Council did not take a position on HB 5696.

 

Ms. Tyler said such e-mail exchanges are not helpful in making decisions.  She said Mr. Preneta’s response to her inquiry regarding HB 5696 was that, in all due respect, not every bill could be acted upon.  She wondered what the process was for making decisions as to which bills to provide spoken or written testimony.

 

Ms. Taylor commented that she had seen Mr. Preneta’s response and did not characterize it that way, but felt that he was expressing the limited time of Council staff and members to comment on each bill.  Ms. Taylor agreed with that statement and said that the Council cannot expect John Flanders or Mary Eberle to do even more work that they are currently doing.  Furthermore, Ms. Taylor stated that any Council member is free to take on any piece of legislation, do the research, write testimony and testify.  If it is a Bill the Council agrees with, the member can testify on behalf of the Council; if not they can testify on their own.

 

Ms. Adamczyk clarified that we limit our testimony to issues affecting all people with developmental disabilities and bills that specifically use the term developmental disabilities.  We do not testify on bills addressing single disability labels.  We do not have the people-power to testify on all bills.

 

Mr. Flanders said the Council testified on bills that reflect the Council’s mission and that cut across all disabilities.

 

Mr. Broadbridge agreed that the Council cannot testify on all bills, however, he was unclear as to who determines which bills are priority.

Ms. Taylor also agreed that the Council cannot testify on all bills but that there should be better circulation of bills upon which the Council might testify.

 

Mr. McCann said he lost track of the Department of Mental Retardation (DMR) name change bill last year.

 

Ms. Lortie wondered how she could look up bills on line.

 

Mr. Broadbridge suggested a legislative “flow chart” and “Cliff Notes” on the legislative process would be helpful.  Ms. Tremarche agreed that a flow chart would be helpful and that it was unclear who writes and presents testimony.

 

Mr. Frank thought that a “flow chart” would probably quickly become obsolete and that the Council lacks a person to specifically focus on legislation.

 

Mr. Flanders said that people can look up bills on the CT General Assembly’s website (www.cga.ct.gov), typing in the bill number and click Go).  He also said the turnaround time for presenting testimony can be very short, which presents a challenge in coming to consensus with several opinions.  Someone then has to write the testimony.  Council members are volunteers, which makes it hard for them to come forward and present testimony.

 

Ms. Taylor said the Council needs a staff person to focus just on legislation and stated that she would have supported hiring a “sessional” staff person (much like the sessional staff hired at the Capitol) to help with this task during the time the Legislature is in session.. 

 

Ms. Adamczyk said legislative Committees can require that only the state agency’s Executive Director present testimony from state agencies.  Other staff sometimes have to wait all day to testify. 

 

Mr. Sinanian said there is not enough work for an additional Council staff person and the Council doesn’t have enough resources for additional staff anyways.

 

Ms. Eberle questioned whether additional staff was necessary or if just a part-time person for the legislative session would be sufficient. 

 

Ms. Tyler wondered what the missions were for the Council, Office of Protection and Advocacy (P&A) and the University Center for Excellence in Developmental Disabilities (UCEDD). 

 

Mr. Broadbridge suggested that the Council should discuss the legislative process and process for presenting testimony be discussed at the Council’s Retreat.

 

Ms Taylor and Mr. Flanders agreed that the Council Staff should send a list of all bills pertaining to the Council issues to Council members, along with their best intelligence of the support for/against each bill. (It was also noted that the list from Beth Leslie does part of this but many Council members noted they do not receive that email.)  That way the Council can make more informed decisions about which bills to testify on and which other members can do on their own if they desire.

 

Ms. Eberle noted that often there is very short notice about testimony on bills and we often have only a few days to respond given the notice of public hearing.

 

Mr. Flanders moved to discuss the legislative process, the process for presenting testimony and advocacy at the Council’s Retreat.  Ms. Eberle seconded.

 

Ms. Adamczyk said there should also be discussion about the CT DD Network partners – Council, P&A and UCEDD.

 

The motion passed unanimously.  [Retreat is scheduled for May 6, 2008 at the Crowne Plaza, Cromwell, from 10:00 a.m. to 4:00 p.m.]

 

The Council did not discuss Strengthening Restraints law, “Billy’s Law” on placements, or Respectful language.

 

Update on Training for Medical Providers

 

Ms. Davis gave  an update on sensitivity training for medical providers for an entire spectrum of disabilities.  There might be opportunities for the

Council to work with St. Francis Hospital on this issue.  Ms. Davis will get the phone numbers for how to file complaints on these issues.

 

Update on Walgreens Facility

 

Ms. duPree gave an update on the hiring at the new Walgreens Facility.  600 people are being hired; 200 jobs are reserved specifically for people with disabilities.  Go to walgreens.jobs

 

Transportation

 

Mr. Legault report that a meeting was held with Sen. DeFronzo, Chair, Transportation Committee, on the need for the culture of ConnDOT to change to consider people with disabilities as transit users and not a human service problem.  The issue will be to better use ConnDOT vans for more accessible, affordable and available public transportation rather than just give them away to not-for-profits and municipals to enable transportation just to their programs.  He said Sen. DeFronzo will speak with the Commission of ConnDOT and try to bring all the parties to the table.

 

Ms. Baker complimented Ms. Langton for her letter to The Hartford Courant on transportation.

 

Housing Complex For Children With Disabilities And Their Families

 

Ms. Adamczyk said the Council needed to discuss the proposed construction of a facility to house entire families who have children who are medically complex. 

 

Ms. Taylor questioned that building a complex to house children who are medically complex and their families addresses the need for children with disabilities to be supported in their own homes.

 

Ms. Tyler said that institutional settings don’t work.

 

Ms. Eberle said that families are desperate for housing and support for their children with disabilities.  There is a breakdown in the system.  There is not enough support in the community.  The state should be expanding such programs as the Katie Beckett Waiver. 

 

Ms. Adamczyk wondered what would happen to the family in this complex if their child dies.  

 

Ms. duPree agreed that children should not be separated from their families but reunited with their families.

 

Ms. Baker reported that she saw a news story on television about a 1 ½ year old boy with autism and cerebral palsy who was injected with his own stem cells.  The treatment is improving his ability to function to the point that his disabilities may be minimal by the time he is 7 years of age.

 

Ms. Taylor moved that the Council write an op-ed article for newspapers that is supportive of a solution to the issue of medically fragile children and will work with  a group on this op-ed.  Ms. Eberle seconded.  The motion passed unanimously.

 

2007 Annual Report

 

[The Council’s 2007 Annual Report has been printed and will be mailed to Council members with the Retreat agenda.  A .pdf version of the report is on the Council’s website.]

 

Advocacy, Public Information and Education Committee

 

Ms. Taylor reported that the “Able Lives 2008 Task Force” met with CT Public Television (CPTV) on March 6th and saw the first draft of an Education Toolkit, which will be the prototype for other toolkits.  The toolkit will be a folder that includes a 10 minute DVD, a CD with a PowerPoint presentation and a series of information sheets, some of which will be standard in each toolkit.  Work on the toolkits is being paid with funds already committed to CPTV.  The Council has set aside up to $50,000 in additional funds for bulk production of the toolkits and distribution but these funds are not committed to CPTV.  A set of original “Able Lives” DVDs will be sought from CPTV.

 

Positive Behavioral Interventions and Supports (PBIS) Conference

 

Ms. Adamczyk requested for volunteers from the Council to work on a PBIS Conference tentatively scheduled for September 23, 2008.

 

Ms. Carrin, Ms. Freyre-Calish and Ms. Tremarche volunteered to work with Ms. Spino on organizing and implementing the conference.

 

Conference on Older Adults and Older Caregivers That Is Not About Segregation

 

Discussion on a proposed Conference on Older Adults and Older Caregivers That Is Not About Segregation was postponed until the next Council meeting as Council members requested more information about how this conference will differ from others already planned..

 

“Partners Convention 2010”

 

Ms. duPree requested Council participation with the Department of Developmental Services in planning a convention to be held in 2010 to celebrate achievements in the field of developmental disabilities.

 

Ms. Lortie moved that the Council participate in planning the Partners Convention 2010”.  Mr. McCann seconded.  The motion passed with Ms. duPree abstaining.

 

Ms. Baker, Mr. Carlson, Mr. Flanders and Mr. Legault agreed to serve on a planning committee with Ms. duPree.

 

Membership Committee

 

Ms. Adamczyk reported that the following Council members are eligible for reappointment and it is assumed they are interested in reappointment:

         

Ms. Baker, Mr. Broadbridge, Mr. Carlson, Ms. Davis, Ms. duPree, Mr. Flanders, Mr. Legault and Ms. Tyler.

 

Retiring or otherwise leaving the Council:

         

Ms. Caro, Ms. Cartland (unless the Council hears otherwise), Mr. Root and Mr. Sinanian.

 

With those retiring or otherwise leaving, plus other vacancies, the Council needs the following:

          2 parents

          4 self-advocates

 

The Council should be careful in filling these vacancies.  The Council especially needs people of color.  The Council has a number of Council members whose children are somewhere along the autism spectrum, a number of self-advocates with cerebral palsy, and intellectual disabilities are well represented.  The Council has a couple people from Bloomfield, Canton and Manchester.  Geographically, the Council has never had self-advocates or parents from Bridgewater, Brookfield, Brooklyn, Burlington, Canaan or Canterbury.  There are many other towns never represented on the Council but people from these towns would compliment the Council’s present geographic spread.  Council members must represent developmental disabilities.  Also, for every public or private agency added to the Council, the Council would have to add at least one self-advocate or parent.

 

Recruitment has begun.  The Membership Committee will do interviews in May so that names can be submitted to the Governor’s Office in June for appointment by September 30, 2008.

 

Ms. Taylor expressed serious reservations about limiting Council membership because of disability label, since labels don’t matter and the Council could miss out on some very good members.  She said that potential Council members should be evaluated based on their skill-set in terms of what they could bring to the Council and other factors, such a geographic, gender, age and disability diversity should play a role but a lesser one.

 

Ms. duPree said the Council benefits from good diversity in its membership.

 

Bylaws

 

Discussion of proposed bylaws changes was postponed to the next Council meeting.

 

Ms. Eberle moved to adjourn.  Ms. DuPree seconded.  There was no discussion.  The motion passed unanimously.

 

The meeting adjourned at 2:30 p.m.

 

                                                                   Respectfully submitted,

 

 

 

                                                                   Notes by Dawn Luciano

                                                                   Transcribed by Ed Preneta

                                                                   Edited by Nancy Taylor

 

 



Content Last Modified on 5/12/2008 2:19:36 PM