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CT Council on Developmental Disabilities
COUNCIL PUBLIC FORUM / MEETING
May 8, 2018, 10:00 a.m. – 3:00 p.m.
Temple Beth El, 2626 Albany Avenue, West Hartford, CT
The 213th meeting of the CT Council on Developmental Disabilities was held on Tuesday, May 8, 2018 from 10:00 a.m. to 2:50 p.m. at Temple Beth El in West Hartford, CT.
Presiding: Shelagh McClure, Chair
Recorder of Minutes: Donna Devin
Members Present: Charles Bergamo, Chris Blake, Vice Chair; April Burke, James Hexter, Gretchen Knauff, Bryan Klimkiewicz, Alicia Kucharczyk, Joyce Lewis, Ellyn Little, Shelagh McClure, Chair; Patricia Richardson, Brenda Stenglein, Robin Wood
Members Absent: Kevin Daly, Ann Gionet, Gary Gross, Margaret McDermott, Megan O’Neill, Antonio Orriola, Linda Rammler, James Rosen, Michael Scanlon Kathy Wolkner,
Staff: Donna Devin
Meeting Assistants: Katie Dwelly, Jennifer Raymond and Rosa Serrano. Kathleen Strauss, an ASL Interpreter was also present
Guests: Emily Ball, Julie Ball, Sue Bastien, Adrienne Benjamin, Alice Buttwell,
Brian Buttwell, Win Evarts, Andrew Kellogg, Doris Maldonado, Jason Mirsky,
Siobhan Morgan, Monique Price-Taylor, Patty Salas, Evelyn Santiago, Christine Skeggs, and Corrine Taylor
Public Forum: Walter Glomb, Council Director, welcomed members of the public to the Forum and provided a general overview of the Council’s history, its obligations and responsibilities. He outlined the Council’s objectives, goals, and initiatives and gave a rundown of events sponsored by the Council. Immediately following his introduction, he opened the floor to hear comments from visitors wishing to address the Council.
The first member of the public to speak was Adrienne Benjamin. As she spoke, she held up a picture of her 21 year old daughter, Zoey, who has severe disabilities. Zoey just started the program at Harc, and her mom said their family was one that had to wait for day program funding. She wanted to bring awareness to the Council of how people like her daughter don’t fit into Council sponsored programs. Adrienne revealed she has to do pretty much everything for Zoey. She expressed the desire for her daughter to be in the least restrictive environment that offers the most freedom, but one that can be individualized. She pointed out that according to DDS level of need data, about 52% of individuals have a LON 5 and up, so 48% have a level of need 1 to 4, and 52% are level of need 5 to 8, meaning the majority of IDD families have more severe needs. She’s very worried about the lack focus on how to help people with more severe needs and doesn’t want the Council to overlook them. She wants to work cooperatively with the Council and suggested a visit Harc in downtown Hartford, to get a feel for what types of initiatives would be beneficial to individuals with severe needs.
Next to speak was Sue Bastien. She has 4 sons with severe levels of needs who receive services through DDS. 2 of her sons have severe autism, while another son, Patrick is blind and a quadriplegic. He has a trach and uses a g-tube and a j-tube. Sue wishes her sons could be out in the community and doing more, but cites the biggest obstacle to this goal is money. It would cost a lot more than is being appropriated for them and this funding is a big issue. She urged the Council to be mindful of closing state facilities, until they research in advance, that there are places available to handle individuals with severe medical needs. She couldn’t find a place that would take Patrick, because of the trach. It took until someone passed away to finally get an opening for him. During the waiting period, he had been at a hospital for special care.
Win Evarts is the father of a 27 year old son, who contracted viral encephalitis as an infant. He applauded the Council on supporting the customized employment initiative, and said it had made a tremendous difference to his son, who had participated in a segment of the training to assist one of the providers seeking accreditation. He commented that his son had completely bounced off of his van that afternoon after the demonstration. “He was so thrilled to have done that and to get some positive reinforcement on task completion and stuff like that. So, it’s made a big difference. I urge you to go forward with it.” He said each part of the methodology helps you learn more about the individual that’s being supported, and does it in a very systematic way. He stressed that’s one of the keys for any parent that has a high needs child, because you know your child better than anybody else, and your real challenge as a parent, is how to teach other people about your child and do it effectively. After mentioning and advising on a couple of impediments to the Council’s goals for housing, he surrendered the mic.
The last person from the public to address the Council, was Christine Skeggs. Her son, Kevin, is 21 and graduating this year. He has multiple needs, including medical needs, uses a wheelchair and has a one on one nurse. Christine asked the Council that in all of their discussions on housing, independence and jobs, etc., to please not forget about the people with medical needs who have a nurse. She said “As a group, they’re getting excluded from day programs, now. Nobody wants them.” She added they’re getting excluded from transportation and they’re getting excluded from group homes, which are closing and no new medical ones are opening. Her opinion is that privatizing has been great, because it saves money and brings people into the community, but the downside is that private organizations are withholding placements, because they’re not required to take individuals with a high level of medical need. Christine wants Kevin to live somewhere safe and in a good community, not the last option on a roster. This has become a huge issue for her and other families she knows. In closing, she asked the Council to keep in mind people who use wheelchairs and are accompanied by staff, as they proceed with the self-directed transportation initiative. She said although Kevin has been accepted into a program finally after 2 years of waiting, she can’t arrange transportation to get him there!
Siobhan Morgan, Waiver Director and Director of Medicaid Operations at DDS spoke last. She feels the Council has set the lead in the state for customized employment, and because of their sponsorship and work in getting providers qualified for customized services, the DDS has added customized services to their waivers. They hope to have the waiver in place by October of this year. She touted other areas where the DDS and the Council can continue to mentor and work together, such as peer-support services and training, counsel and support services for unpaid care-givers. Since some services on the waiver are under-utilized, she wants to partner on getting the word out about them and asked for help with advertisement them to families and other people we support. They are also doing a lot of work with DSS and are going to be ramping up their community outreach, as well as having some staff dedicated working with families to help get them enrolled online with the Medicaid system. “There’s a lot of “Your goals are our goals.”
1. Call to Order: With one person short of a quorum present, Shelagh McClure, Chair, called the meeting to order at 11:15 a.m.
2. Introduction of New Council Member: Charles Bergamo introduced himself to the Council. He is the Chair of the DDS Western Region RAC, and has a 16 year old daughter, who has developmental disabilities. He is very excited to be a part of the Council.
3. Report from Council Chair: Shelagh McClure, Chair, spoke about developments in housing and options for residential models.
4. Report from Director: Walter Glomb summarized the progress of the Council in regards to its goals and objectives. He and James Hexter attended the Disability Policy Seminar in Washington D.C. They met with our Connecticut Delegation, visiting the offices of both Senator Richard Blumenthal and Senator Chris Murphy, as well as meeting with staff at Congresswoman Rosa DeLauro’s office. During his time there, Walt also attended training for new Directors at the NACDD in Washington, D.C.
The Council has hired Patty McQueen, a Political Consultant, to assist them in a public awareness campaign. She’s going to put together some messaging and a ground organization to insert the Southbury issue into election campaign discussions, both actions decided on by the 2020 Committee as goals for this year. The focus will be on the Governor’s race and some other top spots in the upcoming local elections.
The scheduling of statewide screenings of the Building a Great Life Documentary are underway. The Arc of Litchfield has arranged with the owner of a theater in Torrington to be the host of the first screening. More details will be forthcoming.
The Building a Great Life Conference, held on Thursday, April 19th at the Red Lion Hotel and Conference Center in Cromwell, drew over 300 attendees from all regions of the state. Although, the Council and DD Network had hoped for more people to sign up for the Conference, they were thrilled by the number of organizations that sent representatives to attend workshops at the Conference.
Offering 2 workshops on Supported Decision Making, with instruction from Michael Kendrick from the Center for Public Representation, at the Conference enabled the Council to move closer to fulfilling one of their objectives.
The Cross Disability Lifespan Alliance is holding their next meeting from 11:00 a.m. – 1:00 p.m. on Thursday, July 5th at Beth El Temple. Presently, the Alliance has begun planning for the 2018 Candidates’ Forum.
A schedule is being created for site visits to the Council’s grantees. The plan is for them to be completed before summer.
Marc Gold and Associates will offer Job Development training, Wednesday through Friday, June 20th – 22nd. Further details will be provided. The Team is also arranging five regional meetings to educate providers, case managers, education, and families about Customized Employment.
CT KASA is working on a Fall Youth Summit and they will be presenting at the Better Health Conference on Thursday, June 7th at the CT Convention Center in Hartford.
Linda Rammler from the UCONN UCEDD will be resigning from the Council, so she can work for the Council on a part-time basis. Her focus will be on Customized Employment, Campaign 2020, People First and the Cross Disability Lifespan Alliance.
5. Budget Report: The budget is on track and the staff continues to look for opportunities to save money and cut back on costs whenever and where-ever possible.
6. RFP’s for Next Year: RFPs for next year were discussed by the Council. The areas of interests included Parents with Cognitive Limitations, On-Demand Transportation, and Supported Decision Making. A June meeting of the Proposal Review Committee will take place in June.
7. Immigrants with Developmental Disabilities: Gretchen Knauff raised the issue of refugees dealing with disabilities. She wants the Council to think on what measures could be taken to assist them.
8. Announcements and Adjourn: Shelagh McClure asked for a motion for adjournment. Charles Bergamo made a motion for adjournment. April Burke seconded the motion. The meeting adjourned at 2:50 p.m. The next Council meeting will be held on Tuesday, July 10, 2018 in West Hartford.