16th Annual Canadian National Conference an Impressive Success !! NOTE: November 26th, 2008: Progress update regarding meeting with the office of the Minister of Health and the NLDSS A note from Terry French of the Ministers office states that a sum of money has been issued to the NLDSS to assist with operations costs, and that our request for funding for an Executive Director will be assessed in the 2009 Budget process. Members of the NLDSS Board of Directors met with Terry French of the Minister's Office as well as other represenntatives of the Dept. The meeting was productive and we had a lengthy discussion regarding our struggles and concerns. The following week a proposal for financial assistance to fund an executive director was sent to the Minister's office. More details of this meeting to follow.... On May 26th representatives of the NLDSS met with many of the stakeholdes listed below. The meeting was hosted by Cathie Royle and Paula Henessey. Details of this meeting to follow.... From our meeting held with H&CS this week, the momentum is now building and cooperation is now increasing for the formation of a Working Group which will assemble for at least 2 full days of meetings and presentations over the next 3 months. The expected outcome from this Working Group is a set of recommendations which will be made to Government which will focus on building a framework for a Needs-Based Service Delivery Model for children with Down Syndrome. The H&CS group is presently preparing letters to go out to representatives of various stakeholder groups to invite them to participate in our Working Group Meetings. These groups include: - NLDSS - H&CS / Policy & Program Analysts - H&CS / Program & Policy Development Specialists - H&CS / Intervention & Autism Services - H&CS / Program Consultants - H&CS / Prenatal & Early Child Development - Providers of Regional Early Intervention Services - Janeway Child Health & rehab Program - Department of Education It is expected that there will be between 35 and 40 people attending the Working Group Sessions. The Working Group Meeting Dates which have now been set are: 1st Meeting: May 26th (all day) - venue at Confederation Bldg (H&CS) / to be confirmed 2nd Meeting: June 16th (all day) - venue to be confirmed A pre-planning meeting will be required by NLDSS to discuss the 1st Meeting agenda and to have our NLDSS group members prepare for the Working Group Meetings. At this meeting, we also plan to discuss and prepare a pre-Questionnaire document which will be distributed to all NLDSS members and to the Working Group participants in advance of the first Working Session to collect current information on actual services available and evaluate the experiences / effectiveness of these services to the various stakeholders. The tentative agenda for the 1st Working group Meeting (May 26th) is as follows: H&CS to provide an overview of the services they provide and the resources they have available across the province; An NLDSS parent will make a presentation on the needs versus available services for supporting a typical child with DS; A Service Provider will make a presentation on resources available compared to the perceived needs in the community; A panel discussion to review issues and questions on the above 3 presentations; Define key areas needing work / research and identify smaller work groups to tackle an action list; Establish timelines and define agenda items for next meeting; Agree next steps for defining outcomes and making recommendations. For more information or to help us in our efforts, call 738-3336 or toll free 1-877-738-3336.