1. 2005 OSEP National Early Childhood Conference February 7, 2005 11:00-12:30 “To Fee or Not to Fee: That is the Question” NEW JERSEY

2. Lead Agency Department of Health & Senior Services Cumulative Enrollment SFY 2004 - 15,829 NJEIS Budget SFY 2004 - $69,000,000 Average Cum Cost Per Child SFY 2004 - $4,359 State Contribution SFY 2004 - $47,475,000 Contact Terry Harrison, Part C Coordinator Website www.state.nj.us/health/fhs/eiphome.htm STATE INFORMATION

3.  Direction from the Governor’s Office, the Office of Management and Budget and the lead agency Office of the Commissioner to identify potential cost savings actions for the early intervention system.  NJEIS continued to experience a significant increase in the number of children and their families needing services. A 15-20% growth in eligible children was occurring annually with approximately 2% of the birth population served as of December 1, 2001. National data for states with comparable eligibility definitions indicated that NJ would continue to grow significantly (i.e. New York reported on the Federal December 1, 2000 count as serving over 3.5%). In SFY 2001, 7,237 children were referred and evaluated for eligibility at a cost of $2.3 million. Over 10,500 children received services under an Individualized Family Service Plan (IFSP) and at a given point in time over 7,500 children were receiving service coordination at an annual cost over $8 million. Efforts to ensure that all eligible children had appropriate service plans increased the intensity of service needs for children with severe delays and disabilities, especially Autism. National research and advocacy groups were supporting 10 to 40 hours of services per week for children diagnosed on the Autism Spectrum. IMPETUS

4. Increase restrictiveness of eligibility definition. For example there were states that had up to 50% delay required in one area. Reduce the NJ criteria of 350% Federal Poverty Level for all IFSP services at no cost. Increase the percentage of family liability in cost sharing. Eliminate the two hour per week commitment of IFSP services at public expense and initiate family cost share based on FPL at first hour of delivered service. Reduce allowable administrative, clerical and supervisory caps for grant/contracts (Ranged from 15-17.5%) Reduce or eliminate REIC Infrastructure 1.Reduce or eliminate Family Support Coordinators 2.Reduce or eliminate Training and Technical Assistant Coordinators 3.Reduce or eliminate non-required regional family support activities. 4.Reduce or eliminate personnel development funds. 5.Reduce or eliminate Regional Early Intervention Collaboratives. Reduce State Infrastructure 1.Reduce or eliminate lead agency positions. POTENTIAL COST SAVINGS ACTIONS

5. A Stakeholder Finance Workgroup was charged with proposing recommendations to the lead agency. The current financial structure of providing services through a grant process was reviewed with the intent of changing to one that was more fiscally accountable. A cost and time study of early intervention services provided a potential rate structure for early intervention services. Additional state appropriations were sought in accordance with budget language, as appropriate. An additional $900,000 state appropriation was dedicated to the development and implementation of an Early Intervention Management Information System. Multiple financial participation proposals were drafted to identify potential revenue and impact on families at different federal poverty levels. Draft proposals were reviewed with the State Interagency Coordinating Council. A final proposal was issued for public comment. Outreach to stakeholders and legislators. Regional Early Intervention Collaboratives and service coordination units were provided with scripts, fact sheets and other informational materials as tools to outreach to families and facilitate participation in the public comment process. PROCESS 2001 - 2004

6. Stakeholder involvement and buy-in is invaluable. This can be accomplished through Steering Committees, Focused Workgroups, State Interagency Coordinating Councils, regional or local councils, etc. Ideally lead agencies that have direct access (name and addresses) to ensure families are sent information should increase participation during public comment. The Commissioner, Governor and Legislators will consider family comments in making final decisions. When the lead agency must rely on service coordinators and early intervention practitioners to share information, state development of family information for early intervention personnel should lessen the anxiety of sharing information with families. LESSONS LEARNED

7. Family awareness and participation should lessen the family reactions during roll-out and implementation of family cost participation, especially from families that were not provided an opportunity to be heard during the public comment period. Despite careful preparation and distribution of information, service coordinators and practitioners are not always good messengers. Despite all good intentions and information sharing, it will be a painful process. Public comment and family stories have a way of tugging at your emotions and heartstrings LESSONS LEARNED (Continued)