Climbing Mountains to Increase Diagnostic Capacity in State Systems – Florida’s Experience

1. Climbing Mountains to Increase Diagnostic Capacity in State Systems – Florida’s Experience Kathryn Shea, LCSW COO, Fl Center for Child and Family Development Sarasota, FL kathryn.shea@thefloridacenter.org www.thefloridacenter.org

2. Building State FASD Diagnostic Capacity • Laying the Foundation • State FASD Inter-agency Action Group developed in Fall 2000 • Co-Founders • DOH, Maternal and Child Health Office • DCF, Substance Abuse Program Office &Family Safety Program Office • Holds regularly scheduled meetings • Membership includes representation from families effected by FASD and various stakeholder agencies.

3. Building State FASD Diagnostic Capacity • Florida’s FASD State Strategic Plan • Level 1: Prevention • Level 2: Diagnosis and Assessment • Level 3: Intervention • Level 4: Life Support/Extended Services

4. Building State FASD Diagnostic Capacity • 2002 - FASD Center for Excellence Town Hall Meeting held in Clearwater, FL • January, 2004 - Presented before Gov.’s Drug Policy Council – Dir. of Gov’s Office on Drug Control Policy became a huge supporter • May, 2004 - Invited to speak at Florida Drug Summit • Governor and Cabinet were present • Showed slide of brain with FAS vs. normal • Showed video of Seth – (Value of personal story)

5. Building State FASD Diagnostic Capacity • The Florida Center funded a team of five interdisciplinary staff to attend a 2 day training in Seattle, WA on the FASD 4 Digit Diagnostic Code developed by University of Washington FAS –DPN (Diagnostic & Prevention Network) staff • Wrote Community Budget Issue Request (CBIR) October, 2004 for $280,000 to develop Florida’s first statewide FASD Diagnostic & Intervention Clinic in Sarasota

6. Building State FASD Diagnostic Capacity • CBIR sponsored in Senate by Sen. Bennett and in House by Rep. Reagan (get local legislators involved and educated on the issue) • Endorsed/supported by Sarasota County Community Alliance and Board of County Commissioners (get local community involved and educated on the issue)

7. Building State FASD Diagnostic Capacity • CBIR fully funded by House & Senate and supported by Governor Bush – non-recurring state funds • Contract developed with DOH and signed August 1, 2005 • Gov. Bush recommended in his 06/07 budget an increase to $380,000 of base funding and that it be recurring funds. Senate/House approved. Also approved $75,000 non-recurring to start FASD clinic in Jacksonville, FL. Jacksonville Clinic just awarded FASD Center for Excellence sub-contract.

8. Building State FASD Diagnostic Capacity • Surviving Tough Economic Times • This session initially proposed a cut of 50% in base funding of $190,000; with the $75,000 non-recurring eliminated • Initiated a huge response to key legislators; activated the Miami community (site of next clinic) • $190,000 has been fully restored • Additional $260,000 added as a line item • Advocacy efforts now aimed at the Governor’s Office

9. FASD Project DevelopmentFAS DPN Nationwide Clinics

10. Building State FASD Diagnostic Capacity • Leverage Additional Funding • Demonstrates sustainability efforts to State Government also “shares the load” between federal, state, local, private investment) • Fl Center 07/08 FASD Budget • $380,000 DOH funding (recurring) • $100,000 Ounce of Prevention Fund of Fl (3 Years) • $80,000 All Star Children’s Foundation (Sarasota)-3 grants • $75,000 Non-recurring funds from state legislature through another CBIR in FY 07/08 • $30,000 Sarasota County Government FY 07/08 • Total FL Center FASD budget for FY 07/08 $655,000

11. Building State FASD Diagnostic Capacity • Goals of FASD Project: • All connected/linked to FASD state Strategic Plan • To increase statewide diagnosis/identification of young children ages birth through eight with FASD, as early identification and intervention has been determined to be a universal protective factor • To provide statewide training to parents and professionals to increase education/awareness of FASD

12. Building State FASD Diagnostic Capacity • Goals of FASD Project • To provide intensive intervention services to children with FASD and their families residing in Sarasota County. • To seek additional local, state, and federal funding to expand FASD clinics statewide • To explore how we might leverage federal dollars through Medicaid and other funding sources

13. Building State FASD Diagnostic Capacity – The Vision • Replication of Diagnostic/Intervention Centers in 3 other key areas of state (Jacksonville, Miami, Panhandle (Panama City/Pensacola) • Major public awareness/media campaign funded in part by alcohol industry

14. Building State FASD Diagnostic Capacity • Intensive cross-discipline training focusing on health, juvenile justice, mental health, education, developmental disabilities • Evaluation Component to measure outcomes/success of project • Approximate budget: $4,620,000

15. Building State FASD Diagnostic Capacity • Diagnostic Process: • Using 4 Digit Code (Univ. of WA) • Core Team of OT, Speech Pathologist, Mental Health Therapist, Psychologist, Developmental Pediatrician, Child Psychiatrist (on consult) • Assessment takes 4 hours • Currently conducting 6 clinics a month • Diagnostic Assessments scheduled thru July

16. Building State FASD Diagnostic Capacity • Diagnostic Assessments completed in FY 05/06 = Target 35; Performed 37 • Diagnostic Assessments completed in FY 06/07 – Target 70; Performed 73 • Diagnostic Assessments Target for FY 07/08 = 84 - Will reach or exceed target

23. Building State FASD Diagnostic Capacity • Intervention Services/Strategies/Protocols: • Referrals for additional evaluations if deemed necessary per assessment • Interventions/services individualized per child/family needs • 89% of children assessed referred for MH services • 76% of children assessed referred for OT services

24. Building State FASD Diagnostic Capacity • Intervention Services/Strategies/Protocols • 51% of children referred for Speech services • 66% referred for neurological evaluation • 23% referred to Children’s Medical Services • 14% referred for genetic testing/counseling • 33% referred for Special Education services

25. Building State FASD Diagnostic Capacity • Intervention Services/Strategies/Protocols • 37 children/families received intensive intervention services through FL Center FASD clinic FY 06/07 • Core Services include: • Parent advocacy/support/case management • Mental Health services (2 to 3 hours a week) • Psychiatry Services (med management)

26. Building State FASD Diagnostic Capacity • Intervention Services/Strategies/Protocols • Core Services include: • Occupational Therapy Services (2 to 3 times a week) • Respite services (3-4 hours a week) • Behavioral support in home and pre/school or school (4 to 6 hours a week) • Other services as needed

27. Building State FASD Diagnostic Capacity • Intervention Strategies in Progress of Development • Specific Parent Skills Training • Intensive Behavioral Consultation to pre-schools and schools specific to needs of children with FASD • Social skills/problem solving child groups (focusing on pragmatic language, sensory processing, and social/emotional development). Facilitated by OT, Speech, MH practitioners.

28. Building State FASD Diagnostic Capacity • Outcomes to Date for Intervention Protocol: N=37 • Improved development in areas of social/emotional, adaptive functioning, language, and behavior. Tools used: DAYC, Eyeberg Child Behavior Inventory, OT and Speech assessments (looking at additional tools) • Decrease in parent stress. Tool used: Parent Stress Index (Short Form) • Parent Satisfaction: 92% of parents reported satisfied/very satisfied with services. • 86% of children involved in treatment maintained home or school placements

29. Building State FASD Diagnostic Capacity • Summary • Start small – Think Big! • Make a personal connection to people in high places. Parent/child stories or real life connections are critical. • Educate, educate, educate. Use cost/benefit data to show long term state costs to care for long-term. • Have a clear plan of what you want to do and how you want to measure. • Involve parents in all steps of planning and implementation. • Use multiple funding opportunities. • GOOD LUCK!! DON’T GIVE UP!!!