The 220th meeting of the CT Council on Developmental Disabilities was held on Tuesday, July 17, 2019 from 10:00a.m. to 3:00 p.m. at Beth El Temple in West Hartford, CT.

 

Presiding:  James Hexter, Chair

 

Recorder of Minutes:  Donna Devin, Program Assistant

 

Members Present:  Charles Bergamo; Kevin Daly, James Hexter, Chair; Gretchen Knauff, Ellyn Little; James Rosen, Lauren Traceski

 

Members Absent:   April Burke, Antonia Edwards, Ann Gionet, Bryan Klimkiewicz, Alicia Kucharczyk, Joyce Lewis, Shelagh McClure, Vice Chair; Megan O’Neill, Linda Rammler, Patricia Richardson, Michael Scanlon, Brenda Stenglein, Louis St. Felix, Kathy Wolkner

 

Staff:  Walter Glomb, Director

 

Guests:  Angela Jiminez, Program Manager at the CT Dept. of Public Health and Designee for Council Member, Ann Gionet; and Dori Papa, BSE Consultant in the Special Education Division at the CT Dept. of Education and Designee for Council Member, Bryan Klimkiewicz

 

Members of the Public:  Heather Dierberger, Human Resources Coordinator, Marc Community Resources Ltd in Middletown, CT; and Tom Cosker of Rocky Hill, CT, Teacher, and graduate of the 2017 Partners in Policymaking Program, and the 2018 LEND Program.

 

1. Call to Order:  Without a quorum present, James Hexter, Chair, began the meeting at 10:29 a.m.

2. Public Comment:  As he did at the Council’s May Public Forum, Tom Cosker, a parent and advocate, expressed his enthusiasm and support for the continuation of Partners in Policymaking, a leadership program funded by the Connecticut Developmental Disabilities Network.

Heather Dierberger, a parent and advocate, is a member of the current Partners in Policymaking class and is scheduled to graduate in September. She echoed Tom’s effusive praise of Partners training. 

 

3. Report and Legislative Update from the Council Chair:  James Hexter, Chair, updated the Council on Connecticut legislation they had been tracking, that had been passed successfully by both the State House and Senate and were signed by Governor Lamont.

• House Bill 5521 – An Act Expanding Required Health Insurance Coverage for Preexisting Conditions

• House Bill 7000 – An Act Concerning Training for Certain Public Safety and Emergency Services Personnel

• House Bill 7093 – An Act Establishing a Task Force to Increase Employment Opportunities for Persons with Disabilities

• House Bill 7168 – An Act Concerning Transitional Services for Children with Autism Spectrum Disorder

• House Bill 7353 – An Act Concerning the Provision of Special Education

• Senate Bill 832 – An Act Concerning Registries of Persons Found Responsible for Assaults or Other Abuse, Neglect, Exploitation or Abandonment of Elderly Persons or Persons with Disabilities

4. Report from the Council Director:  Walter Glomb gave the Director’s Report. Walt recently arranged an inclusive workgroup with some of the other statewide non-profit organizations to discuss branding within the disability arena. Among the groups in attendance were the Arc Connecticut, Autism Services & Resources Connecticut (ASRC), the Down Syndrome Congress (DSC), Family Support Network (FSN), and Parent to Parent /Family Voices of CT (PATH). Working closely with the non-profit groups and being available as an information resource will enable the Council to reach more grassroots organizations and use its funds more effectively. A second meeting is being planned and Disability Rights Connecticut (DRCT) will receive an invite.

The 2020 Committee met with internationally renowned disability expert and author, Dr. James Conroy, President of the Center for Outcome Analysis in Havertown, PA. Counted among his many noteworthy accomplishments is the Pennhurst State School and Hospital Longitudinal Study. He was instrumental in the closing of the institution. Dr. Conroy conducted a similar study on Mansfield Training Center, a CT state institution that was closed in 1993. He was invited to attend the 2020 Committee meeting, because the group wanted to hear his ideas on closing Southbury Institution. Former DDS Commissioner Morna Murray sent out a state-wide request for recommendations in October of 2015 on its closure for her plan, due by December 31, 2016, to (and as yet unreceived by) the Governor. The Council discussed the importance of having a date for the closure.

The Arc of CT is creating a resource guide on all providers of self-directed services in Connecticut that are available through the DDS and the DSS. By combining this information with the LifeCourse™ Planning framework, they plan to develop tools for assisting people in self-direction. One of the Council’s goals is to have 150 families and self advocates implement strategies for self-direction.
Gretchen Knauff’s group, the Connecticut Coalition for Supported Decision Making, requested Senate Bill No. 63, An Act Concerning the Use of a Supported Decision-Making Agreement by a Person with a Disability, introduced by Senator Martin Looney, be taken off the table. The Coalition felt it didn’t provide enough information to assist people in understanding or being comfortable with supported decision making. Moving forward, they will be working with Senator Looney’s Staff to fine-tune the bill.

Although the Council has satisfied its goal of sponsoring a second Building a Great Life Conference with DRCT and UCONN UCEDD, planning is underway for holding a third conference in 2020.

The Council continues to offer financial support through their Consumer Involvement Fund. The fund covers the cost of self advocates and parents to attend conferences or participate in other leadership opportunities. Even though the fund is widely promoted, there have only been a few requests for funding.  Efforts will continue to increase its availability. Gretchen Knauff suggested the use of a travel agency to arrange airfare.

The Arc Connecticut has been conducting outreach with parents who have cognitive limitations in Connecticut. By the end of the year, a Parents with Cognitive Limitations Group will be operating in Connecticut.

The CT People First Annual Conference was held recently. With numerous workgroups, breakout sessions, and Dr. James Conroy as the keynote speaker, it was a resounding success and was well attended.

 

The Council’s most expensive initiative, Customized Employment trainings with Marc Gold & Associates, has ended. At present, there is no customized employment training in Connecticut. DORS, as required by WIOA, is drawing up an MOA between DDS and DOE, to create a customized employment service. The service would be the same across all 3 agencies and use the same providers and rates. CT would be one of only a few other states to offer this service. Council consultant, Dr. Linda Rammler at the UCONN UCEDD, is writing the service definitions and developing the training for providers.

The Post-Secondary Education initiative has had a lot of positive activity. Goodwin College in East Hartford is submitting forms to for its Comprehensive Transition Program (CTP). This would allow program registrants to fill out a Free Application for Federal Student Aid (FAFSA). The University of Hartford is designing a program. Discussions are underway with St. Joseph University in West Hartford and Trinity College in Hartford.

With no responses to the Council’s RFP last fall, the On Demand Transportation initiative has stalled. The problem is the high price of transportation. The question remains, who is going to provide the service for the amount of money that people with disabilities can afford? Another issue is some services in rural towns have a cut-off at the town’s boundaries!

CT-KASA is doing a tremendous job. They are exploring means to secure more funding for the program. The roll-out of their series of PSA’s targeting healthcare professionals about how youth with I/DD would like to be treated, has been postponed. Walt believes it would be very beneficial if CT-KASA and other self advocacy groups, such as People First, engaged more with each other.

Final on Walt’s list of updates on Council goals was the housing initiative. Two public policies need to be changed that will increase access to affordable, accessible and available housing for people with disabilities. The biggest obstacle is a lack of affordable housing. Medicaid waivers don’t cover rent, food or utility bills, so the challenge is how people with disabilities and limited income can find a place to live, where they’ll be able to take advantage of the many home and community based services being built by the Council and other organizations in Connecticut.

5. Budget Report:   The Council’s Disability Policy Specialist is on medical leave. The budget is on track and staff continues to look for opportunities to save money and cut back on costs whenever possible.

6. Discussion of 2020 Budget:   Walter Glomb, Director provided a PowerPoint presentation on the history of the Council, its purpose and responsibilities; the DD Act, its policies and its focus on Cultural Competence; the federal Administration for Community Living (The ACL), its requirements and expectations, and how its new measures for program performance are more exacting and complex than its previous measurement system. The ACL is interested in the outcome of goals, and follow up after goals are met. The Council is addressing these needs by financing a Ph.D. intern from the UCONN Department of Public Policy, with a MS Degree in Survey Research. He begins in September and will design new surveys and expand the Council’s data collection methods.

7. Announcements and Adjournment:  The meeting concluded at 3:00 p.m. The next Council meeting is the Annual Meeting, to be held on Tuesday, September 10, 2019 at Beth El Temple in West Hartford.